Jan's Journey

Gonna Do This in Parts One and Two

2009-08-16T16:58:00.002-04:00

Hey All....
I have so very much to tell you that I know I'll run out of steam before I finish, so this entry will be in 2 parts. Part 1 and Part 2. Today is part One. My last "real" entry was written on Monday August 3rd, except for my little blurb yesterday, on 8/15. So as I left off in my previous entry, I told you we had decided to once again do my "self experimentation" of taking the Revlamid with the IV chemo Velcade to see if I was again going to develop a fever (ie raised temp as MM world says a REAL fever is 100.5.) So......place your bets now, before time runs out! Well, gee whiz, guess what? I take the Rev on Sat. nite and I start a fever of 100.6 on Sunday. I take it again Sunday nite and ....boom....again run the same temp on Monday. So I issued my own cease and desist order and stopped taking the rev.....so again, gee whiz, no temp on Tues. Wed or the rest of the week for that matter. So it still looks like it's an issue of taking the Rev daily while still having the Velcade in my body. Those 2 together, IN ME, are just not cooperating, which as I've said before, really just blows me away for a number of reasons. Firstly, I have never had a drug reaction ever to anything, and secondly, from all the research I have done, the 3 drugs I am on show the most promise for a complete remission, so the frustration is at crazy levels for me, seeming not to have the ability to take them both. Which then brings me to my visit with Dr. Ben who is an MM specialist at Moffitt Cancer Hospital in Tampa, where I had my bone marrow transplant. Dr. Nair wanted me to see Dr. Ben for a consult on my current status as well as getting his input into what we are doing now (which obviously isn't working) and perhaps he could develop a protocol that would work.
So Mom and I left early Wed morning and made the 2 hour drive to Tampa for my appt. I also brought the results of my last bone body scan and the results of my bone marrow biopsy that showed that I have 55% multiple myeloma cells in my bone marrow. (very very sucky, by the way) :(
To make the meeting with Dr. Ben short and sweet.....he reviewed all of my blood work, results etc and we went over what chemos I am taking and when and how much. I told him about researching that the current chemos I am on seemed to be what was working the best for most people, and he agreed, saying I was on the right meds. I also told him about running a temp and the other issues I was having. He excused himself to "look up some things", and was gone quite a while several times over our visit (Mom swore he was seeing other patients...LOL), but the last time came into the room saying "I think I have figured out the problem". AHHHHHHHH..music to my ears. He said he felt I was getting too much of some and not enough of some but mostly the SCHEDULE I was taking them on needed to be changed. Again, music to my ears. He gave me a sheet of how all my chemos were to be taken and......lordy, lordy......it would be difficult for a rocket scientist to figure out! There is no way I can keep this schedule in my poor little chemo brain, so the day after we got home I sat at the computer and got it all down on paper so it made some sort of sense. Just for instance, to give you an example, the IV chemo is to be given on Days 1, 4, 8 and 11 on a 21 day cycle. (and given in a 3-5 second IV, to be immediately followed by a flush) and then the Revlamid is to be taken days 1 thru 14 every 21 days and the Dex is to be taken on Days 1,2,4,5,8,9,11 and 12 every 21 days. Now this is only for the first 4 cycles and then there are some changes for cycles 5-8, and then a completely different way once I reach maintenance, hopefully on cycle 9. I am so visualizing and praying I get to cycle 9 with no issues. Wouldn't that be wonderful?? This is a complete departure from the way I was getting my chemo, so I see Dr. Nair this upcoming Thurs and will review what was done at my visit with Dr. Ben. I can't imagine that he would make any changes to this new schedule as that is why he sent me to Dr. Ben and Moffitt in the 1st place, to see what changes needed to be made. SO if all remains well, I will be starting the new chemo regime a week from tomorrow (on Monday the 24th). If you're wondering why I didn't discuss this with him on the Thurs I got back, is that Dr. Nair is on vacation for 10 days, so the next time I see him will be this upcoming Thurs. What I haven't mentioned thus far is that even though I ran the temps on Sunday and Monday, I didn't feel good AT ALL on Wed, or Thurs or Fri. either, so I went in to have my bloodwork, CBC, done on Friday and found out WHY I had been feeling so shitty. My RBC were so low, not even a shot of procrit would work (what I usually receive when reds are low, but not dastardly so). My levels were so low that I was being so severely anemic, that I would require a blood transfusion AGAIN....just had one in JULY.....AAAAARRRRRGHHHHHHHH! But it makes sense, with my symptoms of extreme fatigue(blood not carrying oxygen throughout my body), off balance, easily out of breath, etc etc.
Oh yeah, one more thing.....my WBC, for which I was giving myself shots in the belly of neupogen, were at a normal range, so I will continue to hold them until we see the need to resume the shots. So now that I'm leaving you with "having to have a blood transfusion".....I will resume with Part 2 tomorrow.

SO SO MUCH....

2009-08-15T17:19:00.002-04:00

I apologize for not writing in about a week or so, but SO VERY MUCH has transpired, that I need to wrap my head around it, before I can even attempt to fill you in. I'll be formulating my thoughts shortly, so hopefully will fill you in tomorrow or Monday. Again so sorry, but you have been in my thoughts, I just couldn't write due to low energy or facing difficulties. Prayer circle please..let's all hold hands.

Medical Update :(

2009-08-03T15:56:00.004-04:00

I swear....I just can't seem to get a handle on this physical MM stuff. It's really starting to piss me off.......BIG TIME. Let's wander back to short time ago (19 days ago to be exact) when I was admitted to the hospital for the neutrapenic fever. Yeah.yeah.....I know, broken record. But bare with me as I have a short story to tell. When in the hospital I received IV antibiotics and a shot of neupogen daily to bring up my WBC to be able to fight infection. After discharge, on 7/19, I went to the doctors office, starting that Monday and continued to receive the neupogen shots at the doctors office, since we attributed the WBC crash and fevers (hence hospitalization) to the new IV chemo I was receiving, Velcade, and maybe, a big maybe, that I was not tolerating being on 2 chemos at the same time. Because at the time of the crash, I was also taking my "old chemo" Revlamid in addition to the Velcade. When I was discharged from the hospital, (19 days ago to be exact), the Dr. told me to place the revlamid on hold and I would just be getting the Velcade. Fine with me. The next Thursday, I also re-started the revlamid per orders, as I REALLY need both of them to fight the myeloma. Well, I started the rev last Saturday nite and began to run a fever on sunday. Even though I ran a fever on sunday, I took another dose on sun nite. Ran a fever on monday. AH-HA......well, it doesn't take a brain surgeon to think that may be linked since that is exactly what put me in the hospital (19 days ago to be exact....getting tired of that yet? LOL). SO I sopped taking it on my own after only taking it for 2 days. When I say fever, the highest was 101.4 and ranged to a bit over 100. That isn't really a fever in MM world......but it was close. Doctor says a "true fever" is 101.5, but hell, it was too close for comfort for me, plus I felt crappy and achy and since my general overall temp generally runs 97.6, it was a fever to me! I took ibuprofen to bring the temp down. So after running a temp on sat and sun and then stopping the rev, hmmmm......fever gradually goes away and I start to feel halfway human again. So, this past Thurs is another IV chemo day and I told Dr. Nair the sequence of events. Oh yeah.....one more IMPORTANT THING. I think I mentioned that I received neupogen shots the week after my discharge from the hospital at the doctors office and now at home (self administered in my belly each day...that's a fun thing to do), since I was approved by the insurance company to fill it at the pharmacy. A little aside, and I promise I won't get into all the financial aspects of having cancer, the neupogen co-pay cost me $115.00 for a 10 day supply! So times that by 3...........ARRGGHH. (Would I look too weird if all 90 pounds of me set up at a busy instersection with my "catch my pee" container asking for donations?.....just wondering......LOL) Anyway...Because at this time I had received 5 days of shots at the doctors office (until insurance approval) and then another 6 days of shots at home, my white blood cell count this past Thurs (the 6th) was a whopping 20, when the "high end" of normal is 10.9, so I was basically double the normal WBC count! When the doctor saw that he said to totally stop the neupogen shots for a week, and then we will go back to 3 days a week instead of 6 (you don't get a shot on chemo day). Better for my wallet anyway :) Due to chemo brain, I'm not sure if I told you that receiving neupogen's purpose is to increase your white blood cells, (the cells that fight infections) and since mine tanked and I started the fever that sent me to the hospital, thats when we decided to be pro-active and start neupogen to counteract the effect the Velcade was having because it lowered my WBC count. At this visit I also told him that I started the rev like he had told me to, and that after only receiving it for 2 days I started the temp thing, so I went off it on my own. He said that it was a great possibility that the excess WBC, are due to the neupogen shots and caused my fever as my body is working super overtime to manufacture WBC. So the bottom line to Thursday's visit was: no neupogen shots for a week & remain on the lower dose of the IV Velcade I got Thurs. He asked me to conduct my self experiment again. Give my body a rest for 2 days and tonite (sat) I will once again take my chemo revlamid. Will be curious to see if I start a fever again. I'll take it again on sun, just like I did before. IF I start another temp-running bonanza I will stop. If I don't (cross your fingers and say a prayer I don't, as there has been great remission results with using all 3 chemos I am on (rev, velcade and dex). It just seems that thus far, I am not tolerating the both, (which is really really disappointing to me,) since up until now I have handled everything that has ever been thrown at me. I'll take the rev tonite and sun and report on if I get a fever or not....so stay tuned! So right now, I am in a holding pattern. Another source of some anxiety is the fact that Mom and I will be driving over to Tampa (early.......ugh) next Wed morning to go to the Moffitt Cancer Hospital, as I have an appt with my BMT doctor. The purpose of this visit is really my 1 year check-up even though it has really been 14 months, but he wants to give me the going over esp since I relapsed so soon and Dr. Nair wants me to run the sequence of events by him thus far and get his recommendations about what he suggests for future treatment, since my body is truly being an uncooperative pain in the ass.

August Already......

2009-08-02T16:58:00.002-04:00

I can't believe it is August already. The summers in Florida are always brutal...... how did I do it when I was younger, just laying on the South Florida beaches, just baking? Or even just a short 7 years ago, when I spent EVERY Summer weekend, sitting on hot metal bleachers watching my daughter, Lindsay, playing Travel Tournament Softball, even going out of State for the World Series of Softball many times, to sit on (whoever's) really hot metal bleachers. I remember sitting there with washcloths in the ice cold cooler and wrapping them around my head and neck to try to gain some semblance of a normal body temperature! And keeping Linz cool and hydrated was a priority as standing on that hot field playing 1st base or pitching, (or sitting in an almost hotter dugout)......well, let's just say, I don't know how she did it. I admired her for her love and dedication to the sport. I don't know how I did it either. Kinda like what I'm doing now. When I look back at the beginnings of this journey with MM, I see how many times (so far), I have faced challenges and lived to tell the tale. Some are bigger than others, ie the hospitalizations, 2 not counting the BMT. Then of course, 6 weeks in an apartment with my wonderful caretakers (Mom and Kate) during the BMT and the daily trips back and forth to the hospital. Enduring the horrid, side effects of the BMT chemo. Losing all my hair.....(not really a big big deal, but still.....I am a girl!) Then comes the disappointing fact the BMT only lasted 9.5 months and then the relapse. And since the relapse, all the troubles of constant UTI's, blood issues, transfusions (2 so far) and the multitude of daily little symptoms, from terrible fatigue to bowel issues (yep..I said it......chemo makes me constipated) and more. But.....the thing is, I've gone through all this so far, and survived, just like I survived 10 years of every single weekend of the summer sitting on all those hot bleachers. One big difference in all this though......I enjoyed those softball games, I wanted to be at every softball game (NEVER missed even one in all those years).....this MM chit? Not enjoying it so much, and wouldn't much mind if I missed a few of these MM "games" either.

"Normal" Life.....

2009-07-28T15:39:00.002-04:00

I think if you took a poll of cancer patients, they would tell you the one thing they really really want, is to have a "normal life" or get back to what was their normal life. I know that goes through my mind in lots of different ways, as the topic has so many layers to it. Getting back to normal relates to emotional, physical, spiritual and financial "normals". My biggest wish, hope and dream, would be to continue living life the same way after being diagnosed as the way I did before. Is that ever ever possible though? Even if, say you got the physical back on track, don't you always have the mental there saying......you have cancer. You might be in a remission, but the fact is, once you have cancer, you always have cancer, even if it's just a little bitty thought in the back of your mind. The trick then, as I see it, is to strive, through our limitations, to regain as normal of a life as we can after being diagnosed. I would imagine at certain times throughout the journey, you have one thing that will bother you more than others, depending on where your focus may be at that time. Like if it''s a physical thing, well of course, that can't help but take priority at that time, but maybe down the road when the physical aspects get back on track, maybe the financial aspect will rear it's ugly head. Accepting our diagnosis, is #1 in regaining our normal life back, and then the process of adapting to life with cancer comes next. What helps me, I find, is focusing on the bigger picture. Sheesh, I'm always making plans for the future, because I refuse to allow cancer to run my life. Now I will admit, there are times when cancer DOES run my life, through no fault of my own. Like for example, when you have doctor visits every blessed day of the week! Hard to un-focus on cancer during times like that, as the constant needles and blood and vitals etc., slap you in the face with the reality of the situation. But those days, fortunately aren't the norm. How does that saying go? I may have cancer, but it doesn't have me. It's just that we need to remind ourselves every morning when we wake up that HEY..I survived another day, so what am I gonna do with it? And I don't necessarily mean do something physical with the day, it can be any of the other aspects I talked about. We just have to come to the point of acceptance that says, yep, this is shitty....I have cancer.... but it is not the center of my universe and I will push along as best as I am able. Now I don't mean to sound trite...far from it.......and this is not the easiest thing to do either, especially when physically feeling crappy, but keeping it uppermost in my mind helps me. I still have so many things I still want and need to do, that I have to focus on them and give cancer a back seat in my life as best as I can. I have lots of trips I still need to take, some I am currently planning as we speak, and I want to be around for my girls. At least till I'm an old lady :) I just don't want anyone giving in or giving up, which is WAY easier to do than getting battle armor on and fighting another day, but that's the card we drew, so don't fold your hand....play the cards.

Still Hangin' in There.......

2009-07-25T17:24:00.002-04:00

I went to the doctor's office on Thursday (2 days ago) to receive my 2nd injection of the IV chemo drug Velcade. I was so terrified because of what had happened to me after the first injection, and so so so did not want to end up hospitalized this weekend too. Dr. Nair and I had lots to talk about at this visit, but we came to an agreement on my current plan of care. We decided that rather than starting at the normal dose of 103 mg of Velcade, that we would lower the dose I received Thurs to 100 mg. and instead of having the injections twice a week which is the usual protocol, that I would only receive it once a week for now. In addition to lowering the dose, we also developed some pro-active things to do to try to prevent another hospitalization. They are to go back to the office on Fridays after my IV on Thursday, to receive an IV infusion of hydration (as much as I drink water......and it's a ton....) I was still dehydrated when I was admitted to the hospital last week. In addition to the day after hydration, I was also taught to give myself neupogen injections, which I will give myself every day while undergoing this new chemo velcade. Neupogen is the drug I received right before my transplant last year. It is a drug that increases the production of while blood cells, and therefor gives you protection against any bacterial, viral and other infections that are floating around out there. It will give me a protection that the velcade just demolished last week. The problem last week is that the velcade just crashed my WBC, which fight infection, into such dangerous zones, and therefore also started running a temp because of this. To get the neupogen approved by the insurance company will take jumping through a few hoops, since it's an injectable as well as VERY expensive. I don't know how much this is per month as I haven't received any paperwork on it yet, but I know that the oral chemo revlamid I take costs $8,000 a month and velcade is much stronger and more powerful, so I can (no...actually I can't!) imagine what that cost will be. It will probably take about 4 days or so to get this approved, so in the meantime, my whole next week, every single day, will be taken up with doctors appts. On Monday I will go for a CBC (complete blood count) to see where my low platelets are and to determine if I will be going in for a platelet transfusion as well as getting a neupogen shot. Some slightly good news though, is that when I did come home from the hospital last week, my platelets were at 40 (normal 140) but by yesterday they had come up to 54 with no intervention), and then Tues and Wed will be just getting the neupogen shots and Thurs will be IV chemo day, and Friday will hydration and neupogen shots (although I hope to have my own by then and can give them to myself at home) Oh yeah...another change is that instead of the usual prtotcol of 103 mg of velcade twice a week for 2 weeks and then 10 days off, I will be having it once a week all the time. The bottom line is that I am on the right meds to get the MM under control, but the larger question becomes, where is the right balance? I will be on 15 mg of revlamid, 100 mg of Velcade, 40 mg once a week of dexamethasone and coumadin (the blood thinner as chemo causes blood clots). Any and all of these drugs can mess with my blood counts, so he said that our job right now is to play with the dosages until they are right and I can work my way up to the usual dosage and protocols for the velcade which has a proven record of really kciking some MM butt. This could take several months or up until around the holidays, no one knows for sure, since this is NOT an exact science and each person handles things differently. (I'm opting for the several months tops!) It's actually kind of new and weird for me too, as I'm not a "side effects" person.....really ever. This last time was the very first time that I've had more than the usual pesky side effects (low energy etc) from any type of drug I've been given, even through all the stuff I had to take for the bone marrow transplant. Kinda threw me off my game when I had to go the hospital last week, as it was so unexpected too. Well that's where we are right now in bizarro cancer drug world and I just visualize and see myself going through a few rough patches right now, with the promise of getting it right and having LOTS & LOTS of complete remission ahead of me after all this is said and done. Join me in seeing this, won't you? :)

Back in my Own Bed.....

2009-07-21T15:25:00.003-04:00

Was released from the hospital on Sunday afternoon, after arriving there about 11:00 AM on Thursday. The Readers Digest condensed version of what happened: Received my 1st velcade infusion on Friday the 10th. Felt ok and then as I had written, started running a fever and feeling weaker and weaker as each day went by, to the point I was holding onto walls and using a cane when I walked. EVERYTHING was a struggle. I was supposed to receive my 2nd infusion of velcade the following tues, but called the office and told them how I felt and that I had been running a fever and they said no to the infusion and made me an appt to see the doctor the next day (wed). Went through the usual routine of blood etc and it turns out my WBC (which have never been an issue until today) were 1.2 and normal is 4.0. That means with the temp it's called a neutrapenic fever which is a life threatening condition. The hospital didn't have a bed for me that day (required a private room b/c of all the precautions needed with this issue) , so doctor filled me up with 3 hours of IV drugs to get me through the nite and admitted me for the next day. I won't go into all of the gory details of the hospital stay, let's just say it's just horrid being in the hospital. I don't know how you are supposed to heal in such an environment. You can't sleep, the food is horrible, the tubes and Iv's all over, people in and out all day and nite.....and that's just part of it. Each and every moment I was there, all I wanted was to come back home and be in my own bed, with my coffee, take meds on my timetable etc etc. Needless to say, I was thrilled when they gave me the ok to go home on sunday afternoon. I was to follow up with blood at the office on Monday so that's what I did, and WBC back in normal range, RBC a bit low, but nothing requiring intervention BUT my platelet count is super low right now. Normal is 140 and my count is 40! He said we'll wait till I see him on my Thursday appt and if they are still at crisis level, I'll need to have a platelet transfusion. This shit is really getting old. After being in remission and feeling good for 10 months, this relapse has just not given me a break. It has truly been one thing right after or in conjunction with another. Between all the UTI's, transfusions and now a hospital stay under my belt, well all this has happened in the last 6 months so it is truly wearing me out. I need to string together a bunch of good days for a break and have time to recoup. Mentally and physically, it's just a struggle to day by day get through the last 6 months with all this stuff going on. What a cunning and baffling and unrelenting disease this is. We must never take for granted even one second of feeling well.....ever. I am feeling a bit better today, being my 2nd day home, but of course, I did over do it yesterday (monday, after getting home from hosp on sunday) b/c I had the doc appt and then decided to just grab a few things from the grocery store while I was out, which then in turn, I was like, hell, I'm here and I don't know how I'll be feeling so I'd better grocery shop, so that's what I did. By the time I got home I was so whipped, I could barely bring the groceries in and put them away, but now it's done and me and the dogs have food :) Today I am just chillin and plan on doing the same thing tomorrow. Have to be at doctors at 11:00 am on Thursday, so me and the doc have alot of talking to do to figure out where we go from here, since velcade didn't like me too much. Maybe we'll play with the dosage, but it scares the hell out of me to try it again, after what I just went through. No pain no gain, right? Who thought up that crappy way, anyway?

IN THE HOSPITAL RIGHT NOW....

2009-07-16T16:38:00.002-04:00

I really don't have the energy to write down all that has transpired in the last few days, so maybe I'll be feeling better in the next few days and let ya'll know what's going on. Bottom line.......I have been getting worse over the last week (since the velcade last fri) and my WBC have become life threateningly low. When you body cannot produce it's own protection, the ONLY thing to do is hospitalize me and get me on IV antibiotics. I saw an "infection specialist" today, so only him and Nair will be my doctors. I am breaking down in tears right now....I HATE hospitals. The noises, the interruptions, the IV machine noise, uncomfortable beds, bad food....just everything about them and I hate being here so much. I had no choice though.....I could literally die if I had let this go untreated. It's called a "neutrapenic fever". Pray for me.

Where's the Fever coming From?.

2009-07-14T15:07:00.003-04:00

I made my last post on saturday, having had my 1st velcade infusion on friday, as I just wasn't feeling well enough mentally and physically to write anything on friday right after my doctors visit, and after having such a shitty day. What I neglected (or really just chemo brain forgot to tell you)...when I go through the "regular routine" of weight, blood draw, blood pressure and temp, I was surprised to see I was running a low grade temp of 99.2 that day. Not a REAL biggie, but certainly something to watch for sure, when you have no immune system to speak of. Of course my first thought was....UT- OH......here's the possible start of another UTI coming my way. Now generally speaking, for a normal person 99.2 is a slight indication that something may coming my way, but on top of that, my usual temp runs a bit lower than the normal persons...I generally run about 97.8, so that , for me is even more of an indiciation that something may be going on with me. Several visits ago, Dr. Nair had written me an antibiotic for 2 weeks with a 2 week refill, just in case I felt something coming on and before I could get to him, and of course things like this always crop up on a friday or the weekend, when you can't get to the doctors office before monday! So when I came home from my fridays infusion, I started on my levaquin (antibiotic), just in case I was starting a UTI and also dow 3 ibuprofen as a precaution. Started a "fever log" as I can't remember anything these days (YES>>chemo brain back in full force). On Saturday, took my temp and it was normal throughout the day. Sunday, I started to feel weird and feverish, so took my temp at 1:15 pm and it was 101.2, so again, I take the antibiotic and 3 ibuprofen. At 4:15 (so only 3 hours later)it came down to just 100.6, so not much help in going down :( Took another 2 ibuprofen, and finally went to sleep knowing that was the last time I was going to take it that night. Needless to say, felt pretty shitty on Sunday. On Monday, didn''t feel feverish or weird, so took my first temp of the day at 3:25 pm and it was 98.6.....(although con't to take the antibiotic) YAY.....normal. BUT BUT BUT.... at 4:45, just a bit over an hour later, I started feeling really bad and took my temp and it was 101.4! Again, took 3 ibuprofen and my antibiotic. Took my temp again 45 minutes later (at 6:30 pm) and the ibuprofen made it go back down to 101.0, so just .4 lousy degrees in 3 hours. Needless to say,I'm still feeling pretty dang wiped out and weak by this time. At 6:30 pm, after 2 more ibuprofen, I got it down to 99.0 around 8:00 pm and tried to go to bed early. Now today, I was supposed to go in for 2nd Velcade infusion, but I kwow chemo kicks your butt and I wasn't sure whether they would even want me to have it today, so I called the office around 9:00 am (my appt wasn't until 11:15 and my temp was 98.9) but they said NO...Don't come in for the velcade, until we figure out what is causing the fever, they set me up for an appt for tomorrow (wed). Now here is here the predicament lies. If I hadn't had a low grade fever on fri (BEFORE the infusion), it would stand to reason the chemo is the culprit as it is one of the side effects. But because I did have a low grade temp on fri, is it the beginning of an asymptomatic UTI (which I continue to take the antibiotics everyday..it's only 1 pill a day of 500 mg of levaquin).....so it it just the UTI starting? Is is a combination of the velcade and and a UTI? Or is it something altogether different and new? I know that kidney issues can cause fever as well as several other MM issues? I am so weak right now, from something...had to use a cane for stability again today...can hardly move around in bed and again (and I know you are getting tired of hearing this..the FATIGUE is just so overwhelming. Like I couldn't drive myself to the doctors today..just no way...so mom , again my angel, will have to drive me tomorrow, if I still feel the way I do right now. I guess I just want answers. Is it the chicken or the egg? I just know, this is once again, one of my "rough spots" that I will have to get over to fight this fight. It just gets real old sometimes, ya know? I'll keep you posted.

This SOOOOOOOOOOO Sucks!

2009-07-11T18:29:00.002-04:00

I went to see Dr. Nair yesterday for my regular appt., to check all vitals, as well as having the usual CBC to check on white and red blood cells. I weighed 91 lbs. by the way.....something I am so concerned about :( I didn't know if the results of the bone marrow biopsy I had on Tues. would be in by then or not, so I went in wondering if the results were back yet. Mom took me to this appt., as I also wasn't sure if I would be receiving my infusion that day or not, and in case I did have the new chemo infusion and I had any side effects, we thought it best if mom took me to my appt. and Ashley would come and pick me up when I was done, as we also didn't how long it would take either. So I went to this appt not knowing several things. My RBC were all either just at normal or a little low, but nothing that required any intervention. So all of those are stable for now. That last transfusion has lasted me 3 weeks now, so that's a high five, as again, it has made me not as horribly fatigued as I had been.
Just a word about Dr. Nair before I go on with the rest of my day......
As I've said before, I trust him implicitly. We are a team. I really think that goes back to my very first appt. with him when he so thoroughly explained what MM was and what the possible treatment options were for this disease. (He made drawings and all). :) After he was done I had said to him "We are in this together, right?" and "We're gonna do our best to beat his thing as a team, right?" and he answered yes to both questions, and then I gave him a "fist bump"! Oh, yes I did! LOL.....he then stood up and pulled me to my feet and gave me a big hug and said "we will fight this as a team and fight together". That was the very beginning of our relationship, and we've only grown closer and more trusting over these 2-1/2 years. He has also told me that he knows and respects that I am very informed about this disease, so when he says something, he knows I understand what he is talking about and if I don't understand or have any questions, he takes however long it takes to explain things to me. He has a way that includes me in all decisions. For instance, when I went in for my last blood transfusion, the way he said it was "how do you feel about having a blood transfusion for your low RBC count?" Now if I had said, let's just try the shots for a few days and then I'll make my decision, he would have respected my decision and done it my way. At the time, as well documented here, I was feeling so horrid I jumped at the chance for a transfusion, so of course said yes, but my point is he would have done it my way had I chosen differently. Another thing about my doctor.....he does not give false hope NOR predict dire outcomes. If you are ever diagnosed with a serious disease and a doctor either tells you no problem OR gives you an expiration date.....find the door AND another doctor as fast you can. The "no problem" doctor cannot predict side effects, medical complications, etc. and the "expiration doctor" does not have a crystal ball that can predict the future and everyone is different, so neither doctor has any business telling you one way or the other, and has no business being your doctor. That's why I trust Dr. Nair so much. He does neither. What he has to say to me at any given appt. is about how I am doing right then. Another reason I trust him so much>>>> he has said to me on several occasions "Jan, out of all of my patients, you are the one that is always on my mind. I think about what is going on with you and what the next several outcomes might be, and where we wil go based on them. You are always uppermost in my mind". That assures me I am not on someone's back burner....or that my doctor is just waiting for the next bomb to drop before thinking about options, etc etc. It makes me comfortable. He totally has my back and and we have a mutual trust and respect for each other, that I am so grateful and thankful is there. He always greets me by either holding my hands in both of his or a big hug and ends the appt in the same way. I feel close to him. I cannot imagine going through all of this without someone like him guiding me through this journey.
Now back to my day.....he told me that the bone marrow biopsy results were in and that it showed 50% cancer cells were in my bone marrow. At initial diagnosis back in 1/07 the results were 65% cancer cells, so that basically means I am almost back to where I started from and that's even after going through the hellacious bone marrow transplant. I started to cry. This news actually stunned me and I don't really know why. It shouldn't have, as I've had several indications that I have a very aggressive form of MM starting with relapsing from the transplant after only 10 months and the latest low red blood cell counts over and over. That's what MM does. Of course I got an extra hug (LOL) when I started to cry, (and a box of tissues) which I really hadn't planned on crying, it just sorta popped out of me! It was totally unexpected on my part, but hey, it was a real and genuine reaction. We then spoke some time about starting the velcade right then and there and I was prepared as I did bring my IV transfusion bag with all my "stuff" in there to occupy the time. He assured me that this will definitely bring down my MM numbers (that's why he wanted the biopsy results done first). He said I would receive Velcade for 4 months and then we would see where I was at that point. That would be on a schedule of Fridays and Tues. for 2 weeks and then 10 days off.....to start that schedule all over again, for a total of 4 months. I asked him if his goal for this round of treatment was a partial remission (in my mind having had an unsuccessful BMT and having to back down on my revlamid b/c of side effects) and he said NO....my goal for you will always be complete remission. He also told me in years back, all an MM patient could hope for was at the most 3-4 years tops, but now with the inventions of so many new chemos and drug combinations, that I can seriously look at a minimum of 10 years and that who knows what is coming down the pike as far as new treatments and drugs. Like I told you before, he doesnt just throw out numbers easily (or at all), so for him to say something like this really does mean something. After discussing a few more things, I went back to the infusion room and started the next leg of this journey I'm on. Nobody promised it would be easy, huh? I'm just bummed out right now, but I'll get over it and move on. I still find myself feeling a little sorry for myself and the tears well up, but it comes in waves and then passes. Luckily for me, my personality doesn't really make me stay in a sad place for very long and thankfully I'm not a "dweller", so that's a good thing too!! So for now, that's were I am>>>> all positive thoughts and prayers are more than welcome. :) A really big thank you for traveling with me and being by my side while I go through this. It helps even more than you know.

Bone Marrow Biopsy Tommorrow......

2009-07-06T19:24:00.002-04:00

Spent several hours at the outpatient surgery part of the hospital, filling out all of the paperwork, getting blood drawn, etc., making sure all of the "proverbial ducks are in a row" for my bone marrow biopsy tomorrow. Have to be there at 9:00 am for the 11:00 am procedure. I'm not sure, and it wasn't documented on the paperwork anywhere, what kind of anesthesia I will be receiving tomorrow. Last time I had a biopsy at the hospital, it was a different kind of biopsy..... it was right after my cancer diagnosis, and the biopsy was to determine what kind of cancer I had. They had to take different pieces of my tumor from different areas to send to the lab for a definitive diagnosis. Tomorrow it will be going into the hip bone and extracting strands of bone marrow and be used to determine how many cancer cells are "hanging" out and where I basically stand with this disease right now. At initial diagnosis, my bone marrow contained 65% cancer cells, so I am curious to know how aggressive this disease is being right now, (especially after having had a transplant!) and it will also help the doctor assess how aggressive he needs to be in treating the MM. Fingers crossed they haven't gone up an outrageous amount. Which brings me back to...... I'm not sure if I will be out like a light tomorrow or he'll do what he did for the 1st one I just described. During that procedure, I was awake the entire time (I remember them asking me....how do you feel?....did you feel that?..it won't be too much longer....stuff like that) and was told they were giving me (through the IV line).....a fast acting but short duration pain medication that they could administer frequently as needed and another drug...( I forget now.....WOW, that drug has lasted a LONG time..LOL) maybe it was versed?), so that I could still be awake to answer their questions, yet not remember the pain ....THAT"S MY POINT DOING IT THIS WAY :) So we'll see, either way, as long as the biopsy goes smoothly is done as painlessly as possible, it's all good. I'll let you know how it goes, but if it's the same as the prior biopsies which I am anticipating, I won't even know something was done, except for a teensy bit of tenderness in the hip area. No big deal :)

What Low Blood Cells?.......

2009-07-03T12:26:00.002-04:00

Had my appt for my bloodwork yesterday and WOW......all was really really good! It's such a great feeling when after a doctors appt you walk away with good news..... for a change! My WBC's were normal, but those pesky RBCs that have been nothing but mean to me and a HUGE pain in my ass these last few months were wonderful. So that means that not only did the blood transfusion work, it seems to have lasted and not petered out, as it was given to me a week ago today and my numbers yesterday indicate almost double what some of them were last week and the rest in normal range. Woo Hoo. The main thing about all of this though, is I FEEL good. I feel normal, with only a slight fatigue at the end of the day, but hey, that's normal. I am driving, running errands, doing household stuff and even in the midst of choosing a color to paint my bedroom! I had picked up the swatches of colors over a month ago, but then BOOM (enter 4th of July firecracker noises here) the big blood crash, so needless to say, the painting of the bedroom was placed way way back on the last imaginary burner. I also WANT to get back to my studio making beads and jewelry. I've missed that so much :( But now, well, let's just say, I'll be in the studio for LOTS of time now, because while I did have my "crash" time, I had lots of really cool ideas floating around in my head for bead ideas, so I can't wait to get out there and start "playing with fire" again. If you have never seen photos of my bead studio, you can check out my Facebook Page.....Jan Farmer....and on the left bottom of the page is a link to my photo album of my bead studio. Gonna run for some groceries shortly..... ahhhhhhh......the little things you look forward to when feeling better....LOL) and then coming home and "play" with glass for a few hours afterwards. Ya'll have a great 4th of July tomorrow. Ashley and I will either be going over to Mom's for a BBQ or go out to eat, we haven't decided yet. I have 2 upcoming topics that have been swimming around in my mind lately, that I will be writing about shortly.....one is the Bucket List and another will be photos of baby kittens that my Mom and Van fostered.... a feral cat (actually it fostered them)...she had babies in their driveway and they are getting old enough to go to a no-kill shelter for adoption soon and I want to take photos of them while they still have them. They are truly too cute for words.

Just a Quickie..... & Pics :)

2009-07-01T14:08:00.003-04:00

Still feeling pretty dang good today. Have a doctors appt for blood draw tomorrow, so we'll see where the ole RBC's are hangin after the transfusion. I'll have a pretty busy day tomorrow as my appt is at 1:00 pm.....and it's the appt where I get all my monthly scrips written, so afterwards I'll have to stop at the pharmacy and have them filled and then get home as the TV cable guy will be here between 5-7, as the DVR crapped out about 3 days ago, so I've had to watch TV in my bedroom for the last few days. I've added a couple of new photos today that I took on 6-18-09, so that was 13 days ago. Wanted to give you an update on the hair and then I happened to be wearing this little T-shirt type top I bought at a bar when we were on our cruise in November. It was called the "Blue Bitch Bar" and we ate there for lunch (also a photo of that farther down near the cruise photos). I hadn't worn the shirt till the day I took these photos. Thought it was such a hoot, I wanted to share :)

A "Normal" Day.....

2009-06-30T19:43:00.002-04:00

Wow....I think I just had a "normal" day! Pinch me....am I dreaming? I met Ashley at 10:30 am at the car place, as I gave her my old station wagon, and it needed a new gas filter and a shot of freon for the AC, especially right now in this unforgiving heat we are having. On Saturday when I gave her the car, we had gone to the oil change place and had that done and they told me it needed a new gas filter, but they charge up the wazoo for stuff like that, so I didn't want to have it done there because I have a guy that works on my cars and he did it like $24 cheaper today. So I met her up there, and then went to pay my property taxes, mailed something at the post office and then we came home and chilled for awhile. Later on, we went to pick up the car and I was in the mood for an IHOP crepe so we stopped and had an early dinner there and then came back home and she then drove back to her house in Daytona. See what I mean? It was normal! I'm not draggin butt.....feeling damn good actually, so I continue to be amazed at how a lack of those little red blood cells can wreak so much havoc in your body, and for the length of time it can last. For 3 whole weeks I thought I was slowly dying. It really felt that way. I finally scheduled my bone marrow biopsy for next Tuesday at 11:00 AM, but I have to be there at 9:00 AM as it is considered an outpatient surgery so you get assigned your little room and they start the IV's.....you know the drill, and then will have the biopsy and go into the recovery room afterwards. I can drive myself for the pre-appt on Monday to do the paperwork etc, but can't drive myself the day of the procedure because I will be having anesthesia. Hey Bobbie,( or Lissa to tell your mom), if you're reading this...and....if you aren't doing anything next Tues, come take me (aren't I getting better at asking for help?) LOL.... for my biopsy as there will be plenty of "down time" and we can be together the whole afternoon. Give me a holler and let me know if you're free that day and can take me, otherwise mom said she will. Other than that, I'm excited about getting this scheduled, so then I can begin my new IV chemo Velcade the Thursday after the biopsy and hopefully get the ball rolling on decreasing these pesky MM cells floating around and being a pain in my ass and interfering in my life. Just everyone keep your fingers crossed the RBC hold steady and I feel this good when I go in for the procedure :) Now that would be awesome.

Just a Quick Update......

2009-06-29T19:44:00.002-04:00

I did have some slight reactions to the transfusion of Friday, none of which were unmanageable. Later Friday nite I had some diarrhea and that was that. On Saturday I had more diarrhea and a slight headache, which went away with some ibuprofen. All in all, much energy returned and that was my BIG BIG hope in having this procedure. So, it was successful in my book. I'm not 100% re-couped by any means, but if you compare the way I have been feeling the last 3 weeks until now, I say schedule me for a Bungee jump or something! It is so amazing that a low red blood cell count can give you such anemia that it can make you feel the way it made me feel. Truly amazing, as the difference now is like night and day. I am heeding my own warnings now though and not "overdoing" the minute I DO feel better (which is my usual MO), as I want to keep this little reserve of energy for as long as I possibly can, so I will take it easy and take it slow for now. I did find out the bone marrow biopsy will be some time next week (today's Monday, so not this week) which kinda bummed me out, as I really wanted to get started on the new chemo Velcade ASAP, but hospitals can only do so many procedures in a day, and they were booked solid for this week, so it looks like it may be Mon or Tues of next week. We want the results of the biopsy BEFORE receiving this new chemo, to see exactly how many cancer cells are doing the hokey pokey in my bone marrrow right now. Isn't that crazy that the great thing in life I'm looking forward to is having a bone marrow biopsy and starting a new chemotherapy that is so destructive to ALL cells of the body, not just the "bad ones". LOL....the way your thinking changes and your priorities change when you are battling cancer is just downright scary and crazy. Welcome to where I live at the moment..... "Bizzaro World"!

Blood Transfusion Day......

2009-06-26T18:55:00.002-04:00

The alarm went off at 5:15 and I hit it twice. The plan was to go to bed early, which I did, as I turned the tv off around 11:30 pm and fell asleep shortly after. BUT THEN.....around 2:oo am I had to pee, so I woke up and made my way to the bathroom. When this normally happens (pee in the middle of the night), I get up in zombie mode, pee get back into bed and just roll back to sleep with no problem. I guess when I got up to go last night, a thought of having to get up in a few hours for the transfusion came into my brain and that, my friends kept me up until 3:30 am! After laying there awake for an hour I finally turned the tv on and watched some infomercials (LOL) and finally fell back to sleep around 3:30 and then the alarm went off at 5:15. UHGG. That's why it got slapped twice at 5:15 and then I finally decided to get up and start the day. As I've said before, it really does take me a while to physically move in the morning due to pain and stiffness issues, so by the time I got to the hospital for the transfusions it was 7:20. Oh well.....beat me with a stick. Turns out they really weren't ready for me anyway (they probably tell you to get there at least 15 min before they want you there anyway) as the needle entered my arm at exactly 7:40 am. The 2 bags of blood took 3 hours to infuse and then out the door I went. Now last time I had a transfusion, I experienced an increase in heart rate to where I thought I might be having a heart attack and my pulse ran around 130, which really got kinda scary. I also ran a small temp (around 100.2) I had left my post transfusion instructions there by accident last time, so didn't have a sheet to refer to so I didn't know if this was a reaction and normal or abnormal. I was really close to calling the ER that night but decided I would be ok if I could just go to sleep, and I did and was better and better but the heart rate and small fever did last 2 days. Well, today I read and kept the instructions on transfusion reactions and guess what #1 is? INCREASED heart rate, RAPID PULSE and HEART PALPITATIONS! So I guess I wasn't losing my mind last time. (good to know...good to know)`Just FYI the others on the list are: skin rash, fever/chills/flushing, headache, backache (now that one's gonna be hard to tell :), diarrhea (that one won't be hard to tell) and finally fatigue (laughable one for me, huh?) I remember last time too the symptoms came on later in the evening....around 8:00 pm or so and it's now 7:15 pm. I don't feel bad at all, so fingers crossed, I'll skip the ole symptoms this time, if that's ok. So all in all, it went well and I'm feeling OK.

No New Chemo Today......

2009-06-25T18:08:00.002-04:00

Had an appt with Dr. Nair today and after getting blood, weight, blood pressure, temp, etc etc and answering oh so very personal questions like do you have diarrhea or constipation (heehee.....believe me, once you have cancer there is NOTHING personal left about you!), I went in to see the doctor. Oh by the way, the weight from tuesday was correct (I was so hoping it wasn't) as today I weighed 92.5. YUCK We talked for a while about my situation, (I am NEVER rushed by him.....ever), but I'll give you the Reader's Digest condensed version here. I will be going to the hospital at 7 AM tomorrow morning (kill me now) for a 2 bag blood transfusion to get these reds up. Apparently, the MM has become so active and obviously aggressive right now, that the procrit just isn't able to bring the reds up by itself. Hopefully I'll have a better result than the last time I had a transfusion, as I didn't notice a difference in the way I felt. It must have worked on a physical level though as it was about 6-8 weeks since I had the last one I think. Dr. Nair and I also agreed that I will also be scheduled for another bone marrow biopsy next week.....oh....now that's a fun way to spend the day! We did not start the Velcade chemo today, as he said that now that I have fully relapsed, he would be more comfortable knowing exactly where we are starting from at this point, and I agree. When I was first diagnosed, my bone marrow contained 65% cancer cells, so now that we are starting down the road again, he (and me) would like to know where I am exactly starting from now and it will also assist him in helping to determine how aggressive he needs to be when treating me. He said my MM #'s will decrease once I start on this new additional chemo so he wants to wait until after the biopsy is done to begin this additional chemotherapy. SO tentative plans are start on the Velcade next Thurs. When I get in for the biopsy is up to the hospital scheduling. I don't think I mentioned that I have an appt in mid-July at Moffitt Cancer Hospital with the doctor who was in charge of the BMT process. He is a very famous world renowned doctor that specializes in the treatment of MM. The appt is to basically have my one year check-up and Dr. Nair will also talk to him and discuss what he feels are all the available options for me are at this point in time. I drove myself to the docs today as I was feeling up to driving (and to give poor mom a break) but it took forever because of having the transfusion tomorrow, they had to draw additional blood and complete paperwork, and then I had to go to the hospital and register in out-patient and give them my blood so they can type it and have it ready for my morning "cocktail" tomorrow. This running around today wore me out (only so much gas in my tank right now) so I came home, drank a boost, had a little sumpin sumpin to eat and just chilled. Gotta go to bed early tonite as I have to set alarm for 5:15 AM to leave at 6:40 AM because these ole creaky rickity bones need their time in the morning for the heating pad to loosen them up and time for meds to kick in prior to being able to move. Mentally feeling ok, actually. I knew going into this that there would be ups and downs and I'm just in a down right now but "this too shall pass" and things will turn around. Even though we intellectually know this, when the downs arrive, they do throw you for a loop, no matter how prepared you are. Once I feel physically better too, there'll be no stoppin me :)

A Teensy Bit Better today...

2009-06-24T18:34:00.002-04:00

and I mean teensy, but hell, I'll take what I can get at the moment! Found that I could navigate the house without the cane today as I feel a little bit stronger after having had the procrit shot for my low reds yesterday. I was really wracking my brain to figure out HOW ON GOD'S GREEN EARTH, could I make myself start feeling better. That's the frustrating thing....it had to be a medical intervention, that I had no control over. I do believe the shot helped to kick start the reds to start working....wonder if they have a portable thingie to plug mself into when I start feeling shitty? I know my body well enough to know when something is happening and it definitely was, as proven that the shot has made me feel a bit better today. Even threw in 2 loads of laundry today...woo hoo. Dang....I'm not asking much am I, when all I'd like is enough energy to do some simple household tasks right now? I still don't know if I'll be starting on Velcade tomorrow or or not, since I'm not up to par. Have appt at 10.45 am tomorrow, so I'll pack a little "chemo bag", just in case I do. Chemo bag contents: small blankie (it's cold in infusion room)....my I-Pod, 2 magazines, the morning paper, a book and some small snacks, esp since my weight yesterday was 92! Isn't that pathetic? I must look like skeletor. I'm not sure it was the right weight anyway as I wasn't paying attention when she weighed me (and kind of got a ditzy girl I rarely get) and to lose 2 1/2 pounds in 5 days seems a bit much, so I'll pay attention tomorrow and see where that is too. Added 2 Boosts to my daily regime (gosh they are filling), but I gotta pack on some weight as that too can become a detriment to healing if my weight gets too low. Sheesh....anytime, anyone wants to stop the merry-go-round, (or even slow it down), I promise to get off :)

Went to Doctor's Today.....& Unexpected Visit Yesterday....

2009-06-23T18:20:00.003-04:00

As I said yesterday, the doctors office had called to tell me they were calling in a scrip for potassium as it was low again and I told her how horrid I was feeling, so they gave me an appt for today. Mom, my angel, came by to pick me up (still no way I can drive right now) and had the bloodwork done and yes...I needed another shot of ""procrit" to help those little bugger RBC get on the job and start making me feel at least half-way human. My WBC were in the normal range, but those reds...dang....they were 1/2 the count they should have been, as well as hemoglobin and hematocrit in the tank too, so fingers crossed, this shot will help in kick starting the reds and get this low blood cell crap off the table for a while. I am supposed to start my new addition to chemo, Velcade, at my Thursday appt, but I have my doubts it will start that day. Maybe yes, maybe no, but I know in the past he hasn't wanted me to start anything new, while I'm currently dealing with something (right now it's the UTI, low red blood cells, & low potassium,) so I really don't know if I'll start the new chemo on Thurs or not. I really don't know much about this new chemo yet, except what I have read), so I don't know if it will matter if I'm dealing with other issues or not when I start it. I'll let you know. I know in the past he has even had me hold my chemo when battling a UTI (I am still taking it this time though). I would think that starting it when I am "feeling better" (HA HA HA.....loaded question these days)) would make more sense, but he's the doctor, so I don't know what call he'll make and it's still 2 days away, so who knows how I will be feeling after this shot today. I do believe in miracles, so anything could happen between now and thursday. Just a side note to again, sing my mom's praises, let you all know what a wonderful mom I have.....she dropped everything last nite to go grocery shopping for me and get some needed items. I really don't know what I would do without her. And also a note about, Melissa and her great mom,Sharon. My daughter Linz had called me during the day yesterday (yeah...the one that AWAYS ask the direct question"how are you doing today?") , so I told her the truth, as long ago she made me promise I would not hide anything about this disease from her. Well, when she found out how I was feeling, she called Lissa, (they have been best friends since elementary school & Liss lives local and Linz lives in Vegas) who told Linz that she would grocery shop for me (yesterday). Linz called again later and I told her that my mom was going to grab what I needed, so to tell Lissa I was ok. Well, about an hour or so later, who comes to the door, but Lissa and her mom with a beautiful bouquet of flowers (yes....they DO cheer you up, they are so pretty) to check up on me and make sure I was OK. What a surprise and a nice visit from two thoughtful people. They said to make sure I called them if I needed anything (to help take some of the burden off my mom too) and that they would come whenever I needed them. Makes me cry that I have really really awesome people in my life that will be there for me). I am slowly adapting to the the fact there are going to be times when I CANNOT do certain things and have to ask for help. Still don't like it.....but adapting.

Short Note on Today......

2009-06-22T20:50:00.002-04:00

Unlike most of my posts, this one will be very short and very brief. Still feeling absolutely horrid and I've noticed the last few days as I am becoming weaker and weaker, my balance is in jeopardy so I started using a cane today to walk around as a precaution against a fall. I kept hoping I would feel better as the day went on, but that didn't happen, so I called my Mom to ask if she could pick up some groceries for me. I hate asking people to do things for me. Just hate it. I know they don't mind.....I would do it for them in a heartbeat, but for me to ask for help is such a big deal for me, and I guess it shouldn't be. Being an independent woman, comes back and bites you on the ass in times like this. Doctor office called today and said results of my bloodwork are showing low potassium again, so they called in a scrip that we will get tomorrow. While on the phone with them I told her how I was feeling and they set me up for an appt to receive shot for RBC tomorrow. I am at a loss as to how else to help myself get over this hump.

<<< RELAPSED >>> :(

2009-06-19T15:27:00.002-04:00

As you've been reading in my last several entries, I've continued to report the continual UTI's and extreme exhaustion I've been having. I know I sound like a broken record. I had an appt with Dr. Nair yesterday and and we discussed the results of my last "send away to the lab" bloodwork that indicates how my MM is currently behaving and its been a bad bad girl. He was sorry to report that my MM numbers have increased significantly, to the point that I am in total relapse mode at this time. I was lowered on the Rev mg b/c the 25mg just crashed all my blood levels, to the point of even requiring that blood transfusion, so I was lowered to 15 mg. because we had no choice. I guess the 15 mg are inadequate to keep this aggressive form of cancer under control, but we know what the 25 mg did to me, so that's not really an option. You can't heal when your blood numbers are so low. This was devastating news to me yesterday, although I had a sneaky suspicion that something was wrong, because I was getting these recurrent UTI's.....with little break in between them. Something was wrong.....right? I must say though, the MM number came back yesterday is over that 25% "semi-comfortable we can control this" range. So now, I look back and think......WE went through all that misery of the BMT and in all reality I only got 10 months cancer free. Was it all worth it? I don't know. Having this disease just thrusts your life into unimaginable places, takes you places you never dreamed of being, and the only thing I can do, and manage is things I DO have control over. (Insert Serenity Prayer here) Thinking along those lines, I can control my diet, I can control taking my meds, I can control keeping doctor appts. and tests and treatments, and I can control the way I handle this emotionally and spiritually. Those I see as all I CAN control in this situation. For anybody out there that has "control issues", this is not the disease to get! LOL The bottom line right now is that we agreed I will be placed on ANOTHER form of chemotherapy in addition to the oral chemo and dex I am currently on. The new chemo is called Velcade, which I have researched, and it does have reports of many positive results. What I don't like (besides all of this) is this new chemo is ONLY IV.....shit.....it is 2x a week (mon and thur for me) and about a 3 hour infusion (could be worse). I will do this for 2 weeks in a row and then have a 10 day break and continue on this schedule. The long term plan is if I respond to this positively, we'll stay on this for a year, and then repeat all bloodwork, scans, tests etc....the whole shebang and see where I am at that point. The prayers go up for positive results for the addition of Velcade and that I don't experience the side effects that are possible for this strong chemo. I'm not a big "side effects" person as a general rule, so I hope that my luck holds out for this drug as well. I feel so betrayed by my body right now.......angry....hurt.....resentful.....and I know I need to feel these emotions and then let them go. My usual behavior is to sit with them for a few days, process them and then move on. I just found out all this yesterday, so I'll need a few days, but I know I'll be ok. I have faith this will work. I have faith that I will get well. I know I am in good hands with a doctor that does not put me on the back burner and has my back. I am stubborn and I am strong. The possible scenarios could be much worse, so I am thankful I have medical options, even beyond Velcade. I received an email from a friend of mine a few days ago and it was like a funny but true list of things old age teaches you and one of them said....... "If we threw our problems in a pile and saw everyone else's, we'd grab ours back". It made me laugh, because of the stinging truth. So that leaves me with........this sucks.....I hate it...but, I will survive.

Body & Mind Struggles.....

2009-06-12T14:42:00.006-04:00

I've said on my last few entries, how absolutely fatigued I have been feeling. I had my weekly Dr. bloodwork appt yesterday and found out why I have been feeling so horrid. To make the story short...I have another UTI that is kicking my butt...my RBC are so low that I have severe anemia but could get away with just a shot for it this time and not require a transfusion, but was right on the line with it, and I have low potassium. Each one of these by itself could give the normal person to feel fatigued, but when it's a person with an underlying disease process and then you add ALL 3 to the mix....well no wonder I have been complaining of feeling so bad this last week. Just so bone tired. Tired to move around. Tired. Tired. Tired. As referenced to in my May 26th entry, my ability to "override" the sad/negative feelings you feel when your body is not feeling well, was something I was going to be working on. It's easier to stay positive when you are feeling good, or shoot, I'll not even push the envelope, and go as far to say even feeling decent in my world, contributes to maintaining a positive outlook.... Well, as the "old joke" goes, watch what you pray for (oh yeah.....insert a 1/2 hearted chuckle here), as I am being put to my own test in working on that area, as for the last week I have been on a physical downward spiral again, with the struggle to remain in a positive state of mind, struggling along with my body. I don't know really what to call it exactly, as I don't feel that it's so much a "negativity" that takes over the "positivity" per se, so I really don't know what to call it exactly. I would describe the symptoms as I cry easy, thoughts of "I'm so tired of being tired" roll around in my brain, so I suppose that could come under feeling sorry for myself, I look around at simple (ie. sweep, laundry, vacuum etc) things to be done in the house and just let them go as I don't have the energy to even do these small tasks, so this contributes to feeling angry at the inability to perform. Literally this week, I have been unable to walk down my driveway (it is a long one, but no excuse) and get the newspaper to read in the morning. I have had to drive myself down and then check the mailbox for any mail from the day before because if I didn't have the energy to get the paper, I certainly didn't have it to go back down and check the mail in the afternoon.....how pathetic is all that? So that in turn also adds some anger. And then what I guess I am calling a lack of positivity, is due to the inability to do the things I want or need to do. This in turn pisses me off to no end....that lack of control I am having over all these little physical set-backs are pissing me off, the physical effects I am having from these infections and low whatevers, all swirl around together and effect my attitude. I use this as my forum for talking about my true feelings, as to talk them over with family or friends....well dang, with this disease you can begin to sound like a broken record, so I don't even like to mention things, yet when asked the direct question (which my Mom & Linz do EVERYDAY).."how are you feeling?" (that's a loaded question to someone in a daily battle it seems), well hell, I'm such a bad liar, so I answer their question, as vaguely as possible when NOT having a good day, although not all the time. I suppose it all goes back to feeling that lack of control of what it going on with my body. I struggle with maintaining a positive attitude right now, but I'm not gonna lie. It's hard to have my mind over-ride the physical aches and pains and fatigue that I am feeling right now. They say that knowing the problem is 1/2 the battle, so I know that I need to work on this. Earlier today I felt myself giving in to tears and sadness, so I made the house quiet and read my meditations, and then brought out my little hand held meditation balls (thanks Patty) and just concentrated on my breathing. Slowly in and out. Sending healing light throughout my body. I began to settle down and back away from the tears. Focusing on the might and my breath. Getting further away from tears. I focused for about 30 min when I began to feel better. So that's what I did today to attempt to bring back a positive focus, and yes, I did feel better for awhile, and as the day ticks on, I'm starting to feel draggy again, but will continue to use the tools I possess to engage in this battle for my head and heart over my body. There are way way worse things I could be dealing with when it comes to my body, so yes, all in all, in the big picture, I'm just pissing and moaning over the small stuff, I know. And for that I am thankful, and is a huge contributor to one of the main reasons I don't stay where I am mentally right now for very long. This is small stuff I will move on from, but here is where I promised to share my journey honestly.

Nothing Particular Buzzing Around.......

2009-06-09T19:25:00.002-04:00

in this little chemo brain of mine today. :) That can be a very good thing! The mindless wanderings, do take me to places, of course, but I am using my powers of choice to allow them to flit in and then flit out as quickly as they occur. When something I want to expand on, pops into my brain, I keep a little notebook nearby and jot down what the topic was, to come back to, at a later date. Alot of it may have to do with the wave (mini-Tsunami?) of fatigue that seems to have settled in over the last 4 or so days. Not to be compared with the pre-BMT fatigue I experienced after having been on chemo (Revlamid) for 14 months. During that time, to change positions in the bed required an Act of Congress (and we know how swiftly THEY tend to make decisions), so it's nothing along those lines at all, just an over-all pervasive feeling of being dog ass tired. (wonder who made up that phrase?.......and NO....NOT something I will expand on at a later date....LOL) I have though, in the last few weeks, received some very uplifting emails that have made my day......made me happy and made me surprised. They are from "friends" I just haven't "met" yet. They are from people that in whatever way, (the Universe does nothing by accident), seemed to have stumbled across my blog, read it and then took that special extra step to email me a note. And yes....it is SPECIAL to me. I have NO idea, who reads my blog, except for those who have signed up as followers, so to receive an email from someone who follows, but I don't know follows, is such great feedback and I truly truly appreciate it. Diane, if you are reading this, you are on my "to-do" list, as I felt an instant connection to you when reading your email and I will be writing you back soon. If you happened to come across this blog and felt it helpful in any way, you have my blanket permission to share the blog address with anyone you know who is battling this disease, or any cancer really. Caretakers of cancer patients may also find it somewhat helpful and I know my family members who held my hand every step of the way, are also open to any emails or notes if they can be of any help to anyone. Share my blog in support groups, with a therapist, or place a link to it, on any web page you may have or go to frequently, like Facebook, My Space, or a special interest group you may belong to etc, or with anyone you think may reap even a little bit of support. That's why I decided to "put it all out there". The way I look at it, is I (along with many many others) am just one of many tools to assist in the battle against cancer. Support is crucial, no matter where it comes from. If you or anyone you know, has any questions that I can help with, don't hesitate to email. If you just want to talk, vent, scream, yell or share the mini miracles that happen to us, you are not "bothering" me at all, it's actually the opposite.....I receive joy from and get a lift from hearing from you. We are ALL in this together......this battle....this war and the more "tools" we have in our arsenal, the better equipped we will be. If you do follow this blog or even check in time and again, please sign up as a follower (I think it's at the bottom of the page, but I'm not totally sure.....but I know it's on there somewhere), just so I can get a better feel of "who" I am talking to. Thank you for being there for me and spreading joy, there's just not enough of it out there, and it doesn't cost a cent to make someone happy and surprised. You'd be amazed, and of course, we all know what comes around, goes around.

Positive News at Doctor's Appt. Today :)

2009-06-04T16:31:00.004-04:00

Today was my monthly visit with Dr. Nair. Actually, I go to the doctor's office once a week to have blood drawn and have a complete blood count done (CBC) in the office, to check on what those little bugger white, red, hematicrits and and hemoglobins are doing as well as checking on my levels of coumadin, a blood thinner, which I have to take to prevent blood clots from forming (a common side effect of chemo). All tests came back pretty good...a little low on RBCs but that seems to be my norm, and nothing that needed additional attention. I have always tended to run low RBCs throughout this entire Multiple Myeloma shindig, which will give you anemia, so that's the reason I tend to feel fatigued most of the time. They are not low enough to take some sort of action (ie transfusion), just low enough to be a pain in the ass and make me feel tired! I just do my best to ignore it as best I can, and and go about "business as usual" :) One of the many things I love about Dr. Nair, is I am NEVER rushed when I see him. It's actually almost the opposite! Not only do we go over all the medical "stuff", but he takes more than enough time to find out how I am actually doing (mentally, spiritually etc). How many doctors do you know who do this? Most doctors I have ever gone to in the past, well you know how it is....they seem to be in a race to get in under the allotted 1o minute obligatory time frame allowed. The more patients you see, the more money you make. That sounds so cynical, but sorry to say, it is basically true. It's the way the medical system is set up. My doctor shares new information about MM that he is newly made aware of whether it be through his personal reading or seminars or talking to other doctors, and he just got back from the ASCO yearly meeting, and said he will photocopy all applicable MM material and give it to me at my next visit. Again, he knows I like being an informed consumer and that I appreciate staying up-to-date on my disease, so he is willing to share, all the new ideas, drugs and studies going on that have to do with MM. I really love my doctor for all these reasons and more. Today during my visit, I broached the topic of being at the 2 1/2 year mark since diagnosis and since most (all?) literature say the standard life expectancy is 3-5 years, I asked him what he felt about that as it pertains to me and my particular type of MM. He told me those are "old" numbers and that at this point in time, there have been and continue to be sooooo many advances in the research for MM that those numbers are meaningless at this point. He told me with as little chemo as I have had on this 2nd go round and having my MM numbers as low as they are, we are going to stay the course because I am responding so well. I then asked about the use of Velcade (another semi-new drug being used in MM, instead of the dex) as I had read that it had better results than the dexamethasone I am currently on and he said that he would have considered using it with my current arsenal, but again, because of my positive reaction to the current regime I am on, he is "saving" that for when I truly need it. He is stacking up a bunch of "big guns", in case this becomes a "war", rather than just the battle that it currently is. I am considered to be in "partial remission" at this time, which is the next category down from remission. It means that yes, I am showing there are MM cells in my body, but they are in the normal range and not wreaking any havoc at this time.

The Most Important Relationship.....

2009-06-02T18:03:00.002-04:00

We all treasure our relationships with those we love. We love those in our family and we love those we call friends. There are, of course, different levels of intimacy involved in different relationships. We share more information with certain others more than others. We share more thoughts with certain others more than others, and I suppose that is just because we feel an increased level of intimacy with some people more than others. The most important relationship that we are honored to have in this lifetime though, in my humble opinion, is the relationship we have with ourselves. To strive to build an honest, loving and truthful relationship with ourselves is the one most important thing we can do for ourselves AND for those we claim to treasure and love. Getting to really know how you feel (using feeling words, not thinking words), makes us truly who we really are. Once you become acquainted (or re-acquainted, as the case may be) with yourself, the next level is being able to express those feelings with those we love. I'm not talking "generic" either, I'm talking specifics. I love you because you make me feel___________. I love you because when I'm with you I feel ____________. I love you because when I think about the time/times when we ____________, you made me feel _____________. These are just a few examples of what I'm talking about. To be able to express ourselves at this level, at all times, is what I think we should all strive for. Can you imagine leaving a greater legacy than being remembered as a person who was truthful and loving and honest in all of your relationships? And not even remembered per se, just being recognized and respected and loved NOW for being that kind of person. I know that I WANT to be remembered for being THAT kind of person first and foremost, and recognized now that I am following that path as we speak. It is very important to me. To be able to reach this higher level of consciousness, however, takes a constant striving on our part. An active working on ourselves and the way we feel and a continual consistant way we express ourselves to those we love. What we need to remember though, is this is an ongoing process. Life is a continual process. There are the proverbial 2 steps forward and 1 step back in all our lives. It won't happen overnight, if you haven't begun to explore that part of yourself, nor will it be a one time deal. Getting to truly know and love and forgive and like and be honest with yourself is a constant, daily (minute-ly, hourly) process. I cannot think of a better, more loving way to communicate with those we love though. To be your own true self and be comfortable in your own skin and be able to share that with others is such an honor.....to yourself and to those we love. I think we all need reminders now and again, of what our priorities are in life and I just wanted to share one of my most intimate priorities.

Walking A Thin Fine Line......

2009-05-29T18:29:00.003-04:00

I addressed this gently several entries ago, but want to write a little more about it....thank you for indulging me while I "think and pray out loud". As a person that has a life threatening illness, I find myself walking a thin fine line. What line you say? The thin fine line that the doctors "medical speak" about, the thin fine line that all the research reports, the thin fine line that studies and trials that are done say.....about whatever your particular disease may be and what it holds in store for you. The other side of that thin fine line is my spiritual beliefs, my metaphysical beliefs, and my deep down gut feeling beliefs, that I WILL find a way to live a longer, healthy and productive life despite what "they" say. Many many years ago, I embarked on a quest....a spiritual journey you might say, to get to know myself, understand myself and to figure out the most productive way to handle life "issues". That's when, to make a long story short, I say to all, that my "mantra" for living is the Serenity Prayer. A shortcut refresher...."Lord, Grant me the Serenity to accept the things I cannot change, courage to change the things I can, and the Wisdom to know the difference". For me, that pretty much is all there is to it. So few words, that to me, explain so much. If I can do something about something, well I'll do my damnedest to it. If I cannot do anything to change the situation, I turn it over to the Universe and then get out of the way! :) (that's the hardest part, by the way!) My present work is cut out for me, I am well aware, but when I compare the strength of MY feelings and put them square up against what "they" say.....well I must tell you, my feelings win out. I can't truly put my full beliefs into what the medical world tells me when placed up against what my higher self is telling me. There are too many unexplainable things that occur in this Universe.....dare I call them miracles? There is SO MUCH more that we do not know, compared to what we do know. (no matter what your IQ is!) I have thought long and hard about even writing about this, as I'm sure some of you are thinking...ok..she's finally lost it (time to check her temperature) LOL :) But to those of you who really know me and my core beliefs and values, understand what I am talking about. I just cannot fully believe that my time is as limited as they say. I refuse to believe it, and am placing my beliefs uppermost at this point and that's my new starting point. Don't get me wrong, the medical profession knows ALOT about alot.....but not everything. They do not have all the answers. They work with numbers and statistics and the scientific explainable. Only the Universe holds all the answers and that's where my strong connection is. There of course is a time and place for medical interventions, that's why the Universe made doctors and scientists, but the greater interventions are from the unknown......I believe we have an untapped power to create and to change so many things that we are unaware of. What made me write about this or even to begin thinking about this part of my life? SPRING CLEANING (I knew it had to have a purpose besides getting rid of old stuff you should have chucked years ago!) When I started the Spring cleaning process over a month or so ago, I pulled out many of my old books (my gosh, some of them are from the 80's when I first started this spiritual journey), and gave myself a short refresher course to begin the quest again and with hopefully a different perspective than over 20+ years ago, (assuming one becomes wiser as the years go by) and felt this overwhelming feeling of relief.....like a boulder had been lifted off my shoulders......somewhat like I had also been given a map of sorts, to begin anew my return to ACTIVE questing. It's always been there (ie, see Serenity Prayer above), but truth be told, I haven't newly quested in a many years (although I still toss my Runes from time to time) and I interestingly enough (nothing happens by accident) also have been given, within the last few months, some new material to read as well as different visualizations and other tools, to assist in my renewed excitement to begin active questing once again. All of these little pieces came together to gently nudge me to again renew my active commitment to my spiritual self. I pray to be and to remain open to all that is being shown to me. It will come in many forms.....people, places, things, animals, and nature. All we have to do is believe.

A Few Days Difference......

2009-05-26T11:44:00.002-04:00

What a difference a few days makes....especially when those 2 days are filled with taking antibiotics 3 times a day! LOL Sinus, swollen node on neck and pee pee problems are slowly but surely going away. I can feel the difference in my body. My last entry was written while having a slight fever and aching all over and just feeling downright fatigued and shitty, and yesterday and today I woke up feeling near to normal. ......and yes......feel gratitude and gave thanks for this difference. It again showed me that when we are at our lowest physiologically, it is more difficult to stay positive mentally. I have always believed in the direct mind-body connection, so just my little addition, that at least for me, it is so very true. The "trick" I suppose is to be able to "override" the physical aches, pains etc. and transcend into positive mental-ness WHILE feeling physically ill. AHHHHHH.......to do that, my friends, is on my agenda to continually work on. I don't know who said this but it's a quote I remember that says something like....."to reach great heights, you need to go to great depths", something that we should all keep in mind, no matter what your situation may be. To again, really know that deep down, it will get turned around and something better, new and brighter awaits us on the other side of turmoil and trouble, whether it be mental, physical, or spiritual.

Feeling Kinda Low.....

2009-05-24T17:52:00.002-04:00

I haven't had such a good week this week, although I'm trying my damndest to "shake it off" and "buck up". I receive emails from several organizations about the disease of Multiple Myeloma, that are full of new information, new drugs, clinical trials etc., basically being very informative about my disease. I've always believed in being an "informed consumer", whether it's buying a product or knowing about your disease. When I was first diagnosed in January of 2007, I searched and researched about this disease, joined online support groups and generally and specifically looked up what it all meant, from lab work results to tests and everything in between. I also think that just having "celebrated" (!?!?) the one year Anniversary of my Bone Marrow Transplant, lots of things have risen to the surface for me in the last week. In addition.....a dear friend, who is one month ahead of me in transplant world, just found out that he too, has relapsed so he is back again on this crazy merry-go-round of cancer world. While reading some of those articles on MM, I came across one that hit me hard. Really hard. A very matter of fact article about death for MM patients, and it outlined pretty much what would happen and why. Don't get me wrong, I'm glad I read it, because I don't want any surprises, but it did cast a shadow over how I thought I was handling my disease. It also stated that the "median" age from time of diagnosis until death is 3-5 years, and I am on the 2 1/2 year mark, which in all reality, brings me closer to what is going to be my reality. It made me realize how I can't keep put off getting my affairs in order. It's time. I don't want to sound morbid, it's just where I am right now, and I know you never stay in one place forever, so I do know I will move out of this funk, but honestly, aren't I entitled to be sad sometimes and scared? I am both right now. Denial can be wonderful thing, but you can only do it so long, and no matter how much you want to keep it, reality comes a knockin' with a vengeance. I plan on outliving the "expiration date" label they put on this disease and will fight as hard as I am able, but I also need to be prepared, as you never know what will happen. Like right now, I physically feel really crappy..I have what I think is a sinus infection, the node on the left side of my neck is so swollen it hurts to move my head and swallow and then to top it all off, it burned when I peed this morning, so I may be working on another UTI. That's what happens with MM....your resistance to infections of all kinds decreases because we have a cancer of the immune system. Isn't this the most ironic cancer to have? I have a cancer of the part of my body that fights infections, so my body can't even help in fighting the cancer I have! I really haven't talked about this much till now, although I did send my sister the article about death from MM, because I thought she could handle it out of everyone. I had to laugh though, as she writes back that yes, she too is in denial and wants to keep it fully intact! Ahhhhhhhhhh..what a great defense mechanism it is! So that's where I am today....not feeling physically well, completely exhausted and fatigued for no reason (just finished my 2nd round of chemo so this is my off week) and mentally, I guess I need a break from the ongoing fight, so I'm giving in to tears and feeling sad.

The Personal Stuff......

2009-05-18T10:32:00.003-04:00

I have just been in a whirlwind of activity these past few weeks, and having so much fun! First thing that happened......on Mother's Day morning, I get a call at 9:15 am and see by the caller ID that its from Lindsay, who lives in Las Vegas. My first reaction to seeing the number was "ut oh" because of our time difference. I knew it was just 6:15 AM in Vegas, and that means for her to call me that early, well, something's just not right, or she hasn't been to bed yet!! So I answer the phone and she explains that she sent me flowers for Mother's Day and the flower guy was standing outside by the garage door, as he needed a signature to leave the flowers. So I was like "awwwwwww", let me get off and open the garage door, get the flowers and I'll call you later. So I hop out of bed (was doing my drink morning coffee, reading the paper routine) and I opened the garage door and there is Linz standing in the driveway! I was stunned! I never dreamed that she was here.....everyone kept the secret.....so I just grabbed her, held on, and started to cry as I was so happy. Happy Happy tears. I haven't seen her since Christmas, so it had been 4 months since I had seen my baby girl, and that's just too long in my Mommy Book. Linz and I talk almost everyday, but that's just not the same thing as seeing her. Kevin had also come up to stay here for the weekend to celebrate the Mother's Day weekend with me as well as to spend as much time as he could with the girls too, so he was standing there as well. What a surprise and THE BEST Mother's Day present I could ever dream of getting! So we hung out here for awhile and then went to pick up my other daughter Ashley and then went to the Flea and Farmer's Market in Daytona ( gosh, I hadn't been there in like forever!) and walked around and shopped for a while, went to lunch, and then to this specialty chocolate candy store for some goodies, and then came home. The next Day was Sunday, Mother's Day and I had made plans with my mom as she said she wanted to go to breakfast for her "present" so we got up and got to the restaurant around 10:00 am and had a great breakfast at a restaurant owned by a friend of mine. It was me, my mom, Linz, Van and Kevin at breakfast. Kevin left for West Palm Beach after breakfast as it's a 3 hour drive and he needed to get home to do something with his mom on Mother's Day. We all had a great time. Linz then took my car and headed over to Daytona to visit with her sister who lives in Daytona right now, so they visited for awhile and then when Linz came home we went over to her boyfriend's parents house to say "hi" while she was in town and to see his new little nephew who was born while they were in Vegas, so her and Anthony hadn't seen him yet. We stayed for an hour or so, took some photos of the baby for her to take back and then came home to spend the rest of our time together as she was leaving to go back to Vegas early Monday afternoon. On Monday before she left for Vegas, we went to spend some time at my Mom's house as I wanted to give Mom her Mother's Day gift (I got her one of those digital photo frames and had loaded over 400 pictures on it!) and we wanted to play with her new puppy Abby too. So me, Linz and her oldest and dearest friend Melissa went to Mom's for a few hours and then Liss took Linz to the airport. A wonderful present for my Mother's Day, just too short of time :( THEN......
As I wrote on my entry dated May 15th, that day was the 1st Anniversary of my New Birthday.....making it ONE YEAR since having had my Bone Marrow Transplant. About 5:00 pm, I heard the garage door go up and thought it was my brother (who's staying here for 10 days before going back to Colorado).....and the next thing I see is MY SISTER (and Mom) standing in my kitchen holding a dozen roses! AGAIN.....another surprise! She said there was no way she was going to let such an important day go by without being here with me. Who has a better sister than me? NO ONE! She said she came up to spend the weekend together and take me out to my favorite, cook- at- the- table Japanese Restaurant for a celebration dinner, so go get dressed! What fun! We had a great time all weekend, just being together, and looking back over this past year, and all that we have been through. We laughed, we cried, and just thinking where I was a year ago compared to today, is just a blip on the radar screen of life, and yet so significant and many memories were made during the time of my transplant. We were all together for 7 weeks going through this bone marrow transplant process, and the operative word is "all together". I've said it many times and will probably say it a million more.....I COULD NOT have done this without their support. There is just no way. They made it tolerable, fun, less painful, and more laughter. We have a good time just being together anyway, so when you throw in a bone marrow transplant, it just makes it that much more to go through and tell stories about and reminisce. We laughed all over again, about my original Birthday Party, the day of the transplant, when I wore a Birthday Princess Foam crown, Groucho Marx Glasses so I would have eyebrows when I lost my hair (yeah...the hair went but never the eyebrows or eyelashes, thank goodness!).....all the funny cards they bought.....and other goofy presents we just had a ball with. I truly have the best supportive family and sister in the whole world, and give thanks everyday, that she's mine. :) So again, another great weekend of surprise for me from people who love me and want to be with me to celebrate. I am soooooooo lucky. We all spent the weekend together, ( Ashley was with us on Saturday too) grabbed some Mexican food on Saturday night and then Kate had to get going on Sunday and head back home. That's 2 weekends in a row I have had surprises! I'll be bored to tears this coming weekend, when no one surprises me! LOL Anybody up for a road trip to come see me? LOL I've uploaded some photos taken over Mother's Day and my sissie's visit so be sure to take a look. Till later......

The Medical News....

2009-05-17T11:32:00.003-04:00

As you know from my last few posts, I had a rough go of it for about a month or so.... Briefly.....when I was first diagnosed with news of the relapse, I was started back on 25 mg of the chemo, Revlamid and along with that, I had to start back on coumadin (the chemo causes blood clots) and also started on dexamethesone, which is a steroid type med that also has anti-cancer properties. The usual routine is to be on the chemo for 3 weeks on and 1 week off, but I still continue to take the others on my off week. After being on this regime for 1 week, I developed that massive Urinary Tract Infection so the doctor took me off the chemo while I fought the UTI. I was put on an antibiotic which I took for a week, went back the next week and lo and behold, I still have the UTI! He then switched the antibiotic and continued to keep me off the chemo until I could get rid of the UTI. On top of the oral antibiotic he also had me go back into the infusion room and gave me a bag of IV antibiotics to get the show on the road. So now, this is really the 2nd week of being off chemo after only having been on it for 1 week. At the next weekly visit (and man oh man, I had been feeling really shitty) my blood tests came back horrid. EVERYTHING was way way low....the reds, the whites, the hemoglobin and hematicrit, so that was when I received the shots for the low white blood cells (neutrapenia) and was sent to the hospital to receive the blood transfusion for the low red blood cells which was, among other things, making me severely anemic, so I went and did that. By this time, he did have me restart the chemo, but it had been several weeks since I had taken that first week of chemo before being pulled off of the routine schedule. At this time, because my blood work was just so terrible, he lowered my dose of the chemo to 15 mg, rather than the 25. He said that because I have all new blood cells because of the transplant, that the 25 mg, which I tolerated well for 14 months prior to the transplant, it was just too much for my new little baby blood cells. So the routine remains the same now, except for being on a lower dose of chemo now. At my last 2 doctor visits my blood work has come back amazingly well. White cells, red cells, and everything in between have all been coming back great. A wee bit low in some areas, but nothing of concern, or anything that needed additional attention. And the BEST part is....I'm feeling good FINALLY! YAY!
I want to back track a little bit for a minute.....when I was first told the news of my relapse, it was based on the results of a 24 hour urine test. The sensitive urine tests are one of the markers used to see if the Multiple Myeloma has returned, and then if it has, they then begin to use a very sensitive and complicated blood test from then on, which tells you exactly how much it has returned. When I was first told it had returned, it appears as if we caught it quite early as the doctor explained to be in full blown relapse mode, I would technically have to be 25% over the end range, and I was only 5% over the end range. The "normal range" for MM cells in the body is 700-1600. So that is part one of the Good News.....catching the relapse early. The reason I am explaining all of this to you is because, up until this point, I had only been on the 25 mg chemo for about 2 weeks (between being taken off and on for UTI and crappy bloodwork) and then on the 15 mg of chemo for 2 weeks, when the next blood draw was done for the "sensitive and complicated" MM part of blood testing. So I go back to the doctor this past Thursday (yep.....you can find me there every Thursday at 1:15 pm!!) and the doctor then tells me......that even NOT being on the correct chemo schedule because of the above complications AND having the dose on the chemo lowered, my MM cells came back IN THE NORMAL RANGE! So, according to the blood testing the chemo I am now on has kicked some MM butt. The plan is to stay on this regime for at least 9 months to a year, to (fingers crossed) keep my MM under control this way. SO that my friends is GOOD NEWS #2!! Like I said a few minutes ago, the best part is I am feeling good. WHEW......another glaring reminder, to be oh so VERY grateful and thankful when your body feels good. So that's basically where I am medically at the moment. All of these results are happening because the transplant replaced every single blood cell with new ones, and my body will react differently than it ever has in the past. I can't compare how I did on the 14 months of chemo before the transplant to what I am doing now, because it is a whole new ball game, differet set of rules and directions, I guess, so this is a new road I am on right now. I have no "comparisons" to judge by, or really know anything about this new me right now. Just because I may have reacted one way in the past, does not guarantee that is how my body will react now. So, I am again, asking for you to accompany me down (or up?) this NEW road I am now on. I know we can do this together.

TODAY is my "NEW BIRTHDAY" !

2009-05-15T12:50:00.002-04:00

WOW....one year ago today was my actual Bone Marrow Transplant! They call it your "New Birthday" as literally all of your blood, which is, of course, our true lifeline, was totally replaced with brand new baby stem cells which knew (aren't our bodies truly miraculous?) exactly where to go and what to do. The stem cells can turn into anything and go anywhere once placed in the body. Even though these stem cells didn't come with their directions attached, didn't know what they where being used for when infused into my body, they took a look around and went straight to my bone marrow and began making brand new blood for me. As per the Grateful Dead......"what a long strange trip it's been". I have so many things to be thankful for in this past year (and more before that, of course), but my focus right now will be on where this last year has taken me. A year is just a measurement of time, yet it seems to become significant often throughout that one year period of time. We tend to look back, think about and make revisions to life, at that one year mark. We think in terms of the the past year on our birthdays (real and new ones!), family member birthdays, particularly our children's, we think of them on anniversaries, we think of them on New Year's Eve, and we also think of them on other such "important personal dates" that have happened in our lives, be it a graduation date, a death date, and I've even gone over "year stuff" on vacation dates etc!
A year can go by oh so very fast, as we know, especially as we grow older, and then on top of that, when you live with an incurable disease or cancer, it even adds that much more to the "thinkings" of going over the past year. Again, even though I have an incurable cancer, my overwhelming feelings of gratitude are enormous. I have a great life full of hope and optimism that I will live a long healthy life, despite this cancer. Every day you get to make that day the best you can.....even when shitty things happen, you have a choice in what way to process, see and feel those things and turn it around in your mind and remind yourself it's just a bump in a very long road you are traveling, and that at some point you will overcome. Nothing can get you down unless you give it permission to do so.
This last year has definitely had it's ups and downs for me......but mostly ups! Hey, I have cancer.....I had and lived through a bone marrow transplant, I've done well overall in this past year....so hey...I can handle any and all of the other petty little life stuff that comes my way, because it "ain't nothin" compared to what I've been through this past year. I will post soon as I have some other things to share, but gotta get goin for now. I did post some new photos taken a few days ago, so check them out. Yep.....shows you how much even hair grows in the last year! LOL

Back on the Laptop....

2009-04-27T18:09:00.002-04:00

Spent 2 hours today with a tech guy from my broadband company and he finally figured out why I wasn't able to get online via my laptop. Something weird with my virus protection program, so we un-installed and re-installed and that did the trick. I was thinking I had a problem with my router at first, but kept getting info that it was sending a signal and my laptop was getting a signal from the router, so who knows what happenened! He said it may have occurred when I received automatic updates from the virusware program. Anyway, that's all cleared up and I'm glad because sitting at the desktop was a killer for my back and I needed the laptop to be able to sit comfortable and work on it. Now if I can just get my body on track......had the transfusion last friday and didn't have any positive results that I could feel, although I did have color return to my face. I was truly white as a ghost and looked like hell. Still not feeling right though, so gonna have him check my thyroid levels as I kinda feel like I did when I started to have thyroid problems about 5 years ago, so I want to see if maybe I need to change my medication levels with that hormone. I feel kinda shaky, low pulse, short of breath....just not feeling right. I know my body well enough to know when it's not right and it isn't right now. Hope it doesn't take long to figure this out, as it's just wearin me out. I feel like yelling....."give me a break".....I just had a horrid UTI, a blood transfusion, CBC #'s whacky from starting chemo again....I just want things to get back to my "normal" so I can focus on staying healthy despite this cancer. Sounds weird huh?

Still Not Right......

2009-04-26T17:53:00.002-04:00

Just a quick checking in as my laptop is still down and sitting at the desk to work on the computer just doesn't cut it for me becasue of my back pain. So to update...after fighting a UTI for 3 weeks, went to doctor appt and in 2 weeks both my WBC and RBC went to near crashing levels and that's only been on chemo for 3 weeks off and on. He had me stop it for a week with the UTI stuff and then on a week and then off again because of the low blood counts. Neutropenia so bad I required a shot in the office and the RBC so low, I had to go to the hospital last friday for a 2 bag blood transfusion. Something is very wrong with me. Pulse is only running about 48 (80 is normal), am short of breath, very weak, I'm just not doing well and I want to be back to normal so bad so I can focus on battling the MM, but right now, all the fight has left me.

Laying Low....

2009-04-20T15:59:00.002-04:00

Hi All
haven't been on the computer much this past week or so. Guess you could say I'm layin low for now, as I have a sneaky suspicion I still have a pesky UTI. Still have some "unexplained" temperature spikes at night and just all around feelin kinda punky. I go for bloodwork and urine on Thursday so I'll see what's up then.
Hang in there with me :)

Happy Easter .....

2009-04-12T19:15:00.003-04:00

Just a short note to wish you all a
HAPPY EASTER
We had a great dinner at Mom's and Kevin and Ashley joined us.
At our prayer......
I gave thanks for having food on the table, family surrounding us and gave thanks that we are where we are meant to be and asked to be blessed with strength and courage for us all.

Still Pluggin' Along :)

2009-04-10T18:00:00.002-04:00

Today's Friday and I feel even better than I did yesterday, so all systems are a "go"! Feeling as bad as I did, is again a HUGE reminder that we need to be thankful for our health and our good days. I do thank The Universe every day for being allowed to live to fight the good fight, but when you get as sick as I was, it brings it all back into even MORE perspective and focus. Being human, we do tend to "take things for granted", so we need little nudges or reminders that we all do have an expiration date, so again, be thankful to the Universe for all that we have and all that we are. Have a GREAT Easter holiday with family and friends, and know that you all are in my prayers. I really couldn't do this without you :)

WHEW>>>> I'm Back!

2009-04-09T18:08:00.002-04:00

Well howdy howdy howdy! I've got good news and OK news ..... Sorry I have been gone so long, but I honestly did NOTHING for almost a week. Actually, couldn't do ANYTHING for almost a week. Once upon a time....in a far-away land (fever world), I started to run a temp of 103 and it fluctuated between that and 99. for a week no matter how much ibuprofen I took. Long story short, it turns out I had a massive Urinary Tract Infection...the 2nd one in a month (but the first one was nothing like this one)...and it truly kicked my ass. I was so weak from both the fevers and the infection that I had to rest walking from my bedroom to the kitchen! Everything was a struggle. I cannot believe that a UTI could knock you so down and out. Also being on my 1st week of chemo lowered my resistance too so they must have gotten together to create the "perfect storm" in my body. On friday, Mom drove me to see Dr. Nair and he did the blood and urine tests and then sent me to the infusion room to hang a bag of IV antibiotics to jump start this thing and get the show on the road. I thought it would start working pretty quickly being IV but I didn't feel near human until a few days ago....Tues....and that was only operating at about 70% at best. Walking to get the paper in the morning was a BIG DEAL. I really am in awe of how awful a UTI can make you feel. At my friday visit, Dr. Nair told me to hold off on the chemo and not take it until I saw him today. So today, my regular monthly visit, he re-tested the urine and I STILL have a UTI so he switched my antibiotic but I do re-start my chemo tonite. The urine has improved from what it was, but there is still bacteria in there. What stubborn little f*cks they must be! Bloodwork a little low in a few areas, but that's due to the infection, so I go back for bloodwork in 2 weeks and in the meantime I start on a sulfa based antibiotic tonite and hope it knocks it right out this time.
I have what I think is GREAT NEWS regarding my Multiple Myeloma though! On my visit to the oncologist that March 3 when he gave me the news of the return of my MM, it kinda threw me for a loop that day because I had been coming back with ZERO MM cells ever since my transplant. Some of that visit is a blur after telling me it was back and I remember him saying that he had received my bloodwork back and that he was sorry to tell me that we were "going down the relapse road", so he was going to start me back on my prior chemo regime to get a handle on it. Usually I ask alot of questions, but that day I was just so blown away I couldn't form a question! So in between that day and the day I went back for my UTI IV meds, I had time to formulate questions to ask him and one of my questions was to explain what the numbers REALLY mean. There is a normal range, just like any bloodwork has, so I wanted an explanation of what my numbers meant and what it really means as far as what was goin on inside my body. He explained that to be in a full blown relapse, the numbers must be 25% OVER the highest end of the normal range. I am only 5% OVER the normal range, so he does not consider me in a full blown relapse right now. My numbers mean that, yes, the MM has returned HOWEVER we caught it so early and the numbers are so low, that he is NOT worried about me and thinks that this round of chemo just might do the trick. So the plan is to stay on this about 9 mos to a year, and then a bone marrow biopsy to see where we really are and if there has been any damage. So needless to say I am thrilled with this news of my numbers being so low and not considered unmanageable! YAY! Not too thrilled about going back on the chemo, but hey, if that's all I have to do, I'll manage all the little crappy side effects. I'm just hoping the fatigue doesn't hit me as hard as last time, but then again, if it does, I can manage that too and I have to stay on top of the weight thing, so next grocery shopping list will include lots of ice cream, whipped cream and fudge sauce and any other fattening thing I can think of! That's it for now.....good to be back :)

Chemo Day 5.....

2009-04-01T18:43:00.002-04:00

Actually I've only taken it 4 days, as I take it before bed, so that's just 4 doses so far. I was on this same med, same dosage, for 14 months prior to my BMT with relatively few side effects. Lots of fatigue......really thirsty.....appetite change which made me lose weight and taste buds changed but I could handle all of that. I woke up this morning really thirsty and downed 1/2 a bottled water right away. Just guzzled it. My morning coffee tasted weird.....my starbucks frappacino which I love, tasted watered down and I put it back. I also woke up with 3 blisters on my lower lip with a 4th one starting . I put blistex on it to keep it moist with plans to call Dr. Nair tomorrow. Reason I didn't call him today is I was on the computer all day as my laptops been acting weird (real slow) and that's before this worm thing! And I didn't know it was gonna take all dang day to fix it! Problem is Revlamid DOES NOT cause blisters but neutropenia does (which you get from chemo when the chemo makes you blood cell count too low. And now....on top of that....I felt a little weird about 15 minutes ago, so I took my temp and it was 103! No adult should run a fever that high. So I took 600 mg of Ibuprofen (can't take aspirin as I am already on coumadin and I don't want to bleed out.) I feel myself being weird right now (feverish) so wanted to get this entry in before I go to sleep or something bad happens. I'll call doc tomorrow so I just hope I get thru the nite ok and it's not my kidneys or something else. Not calling Mom or my sis, because what would they be able to do and it would just make them worry. And if I call Dr. answering servide, he'll tell me to go straight to the hospital, which I'll probably end up doing tomorrow anyway, if I don't stop the fever. I'd rather sleep in my bed tonite. I'll take my temp again in about an hour to see if the ibuprofen kicked in, but somethin is causing the temp, so sort of infection I presume or it may just be the low white blood cells. Will find out one way or another tomorrow. SHIT SHIT SHIT>>>>>>I am sooooooo sick of this shit. Only 4 days and all these symptoms already? Love you guys....and good nite.

4th Dose of Chemo Tonite......

2009-03-31T18:02:00.002-04:00

It's been 3 nites that I have taken the Revlamid an Coumadin and this Friday will be when I add the Dex. So far, in 3 days I have noticed a slight change in my taste buds, a slight numbness in my lips and the thought of food kinda skeeves me out! How I could tell about the taste buds as that I am addicted to Starbucks Vanilla Frappacino, the kind you can buy at the grocery store. You can also but it at Starbucks, but I usually just pick it up when doing my regular grocery shopping. I opened one up today and took about 3 sips and thought " they must have messed up this batch as it tastes watered down. So I opened another and WAA LAAAAAAAAAAA......watered down too. I remember the first time around I stopped buying Starbucks because they tasted gross and switched to just water (saved me money! LOL) as water seemed to be the only thing that quenched my thirst and believe me I drank gallons!! At lease lost of water helps with flushing out kidneys etc. so I really didn't miss the Frappacino. Yesterday I noticed a slight tingly felling in upper and lower lips, so we'll see where that leads us. And lastly, I had planned to make a pasta dish tonite for dinner, but when I got the ingredients out it was just gross. No other way to describe it. So I put those back and thought...."what can I eat that's bland, plain and simple. So I toasted a bagel and put some peanut butter on it, and here it sits, but I promise I'll gag it down if I have to, as I'm up to 106 lbs. and I'll be damned (if I can help it) to get back to a lowly 93 lbs. So all of this happening on just 3 days of chemo has me concerned, but I'll see where it takes me. Meanwhile....Let's Eat and Cheers.......

Chemo Arrived Today.....

2009-03-28T19:52:00.002-04:00

Well, what do ya know? All the hoops I jumped through a few days ago, paid off, as UPS delivered my chemo (Revlamid) around noon today. I must confess I had a bit of an anxiety attack again after the Rev was delivered....didn't last for too long, but felt my heart starting to race and a little shortness of breath. I also had to run to the pharmacy here, as my doctor called in 2 prescriptions I have to take with the chemo.....I needed to pick up my coumadin (blood thinner) and dexamethasone (a steriod that gives the chemo a little extra boost), so I could start the whole regime over again tonight. This merry-go-round sucks. The horses on it are ugly. I don't like it.

Feeling Better.....

2009-03-27T11:46:00.002-04:00

Part of the problem yesterday, is I was dead ass tired, and didn't even realize it. Either I was tired first, which made me feel the way I did, OR feeling those emotions made me tired. Which is it.... Chicken or egg? All I know is, I got settled into bed to watch some TV before going to sleep, and the next thing I know, I wake up and the TV's going and the show I was watching was something I had taped (I have a Tivo type of recorder) and I have no recollection of what it was about at all! Usually I'll watch a few hours of TV before turning off the lights and calling it a day, but last night? I have no idea! After watching a recorded show, I'll delete it, but this morning the show was still there, so I must have almost passed out the minute my my head touched the pillow. Feel rested today and none of the ugly feelings are there......maybe a titch of anxiety and frustration around the "getting the chemo crap" straightened out, but other than that, all's well. Thank you all for EVERYTHING.

Today I am.....

2009-03-26T15:07:00.001-04:00

Today I am:
1. Sad
2. Stressed
3. Frustrated
4. Anxious

All 4 of these emotions I cannot afford.

Long Day.....

2009-03-25T22:33:00.003-04:00

Full of hassle day.....trompin through the maze of paperwork to get my meds.....can't get started on chemo till we jump through all the hoops they make you jump through. Was on the phone for over 4 hours today talkin to this person and that person. You have to be your own advocate and make all these calls yourself and then re- call these people to make sure they follow through (do the job they get paid to do). Not A GOOD DAY....had a headache when I got through with the calls.

Tomorrows.....

2009-03-22T18:37:00.003-04:00

When we say "tomorrow" I don't think we know what a powerful word it is. Tomorrow, of course, means the day after today and we usually use it in the context of "I will be doing (fill in the blank) tomorrow" or "we are going to (fill in the blank) tomorrow". We always assume that there really will be a tomorrow, don't we? But how do your know? How do you really know that tomorrow will ever come? Of course, up to this point, tomorrow has always come, so we take it for granted, and rightfully so as "tomorrow" hasn't not come through for us yet! One of the greatest old show tunes of all time is from the stage play ANNIE, which it titled "Tomorrow" (it's only a day away)......got ya singin didn't I? hee hee I'm sure it was written because tomorrow hold soooooooo much promise!! Tomorrow we can do the things we didn't get to do today. Tomorrow gives us an automatic "do-over" if you need to make amends or correct a wrong. Tomorrow holds the key to turning life around. Tomorrow can make us feel anxious (ie job interview tomorrow).....Tomorrow can make us
feel happy (meeting with the "girls" for coffee or a drink).......I don't think there is another word that can take the place of or be substituted for the word tomorrow.....at least not one I can think of in my vocabulary. And for me, tomorrow may be the day they find something to really help in finding a cure for Multiple Myeloma. So my fervent wish would be to have the ability to string a whole bunch of "tomorrows" together and live long enough by stringing all those "tomorrows" together so I will have time. I just need time. My faith is strong, my attitude and outlook positive....all the things I can control I will, all in the most graceful encouraging and hopeful way I can.....I just need a bunch of tomorrows, because I cannot control the passage of time.....I just need a bunch of tomorrows.

The Inevitable.....

2009-03-20T18:23:00.002-04:00

I knew from the "get go" that the nature of Multiple Myeloma is to relapse. They told me this on day #1, and with the great promise of having a Bone Marrow Transplant, the odds of returning were at least farther away then having no BMT done at all. HA..... I say to that! I've always been one to beat the odds in many situations, but in this particular thing I wanted to beat the odds ON THE OTHER END>>> ie, having to GO LONGER before relapse, not sooner than the 1-3 years it was "supposed" to give me. So now all I'm left with right now, is an active cancer and I must find my way along this long and tortouous road to make peace and embrace the Cancer Monster. When you're little you hide under the covers when you "see" a monster, but what do you do when you see a monster when you are an adult? And it REALLY IS a monster? Well, I suppose I could hide under the covers. Tempting. But in reality I'll at least have to come out and pee and get something to drink, so then EEEEEEEEEEEEEEEEK......there's the monster again. SO the only thing left to do is face the monster and make peace with the monster as it will literally be with me the rest of my life. So what I'm currently working on is shaking hands with the monster although clearly making sure he/she understands I am still a mighty foe to deal with, but also let it know that it doesn't scare me. No hiding under the covers for me. Battles and going to war, which is really what I'm doing just reminds me of how strong I must be to fight. You don't really comprehend how very strong you are until you have to prove it. Now, I'm not gonna lie.....the feeling of being vulnerable is beyond words, but then so is my determination and stubborness to beat this. I have too many things to do yet, to allow this monster to scare me and force me under the covers. Besides, I can't stand the dog hair on the covers! LOL

Bone Survey Results.....

2009-03-19T10:50:00.002-04:00

Mom and I went to pick up my Bone Survey Results and then spend a little time shopping for a few things at Bealls. (I thought of you Patty :) I needed a few little things like a little rug at the doorway between my garage and laundry room, the kind that won't skid on you as it will go on top of tile, to cut down on the crap that gets tracked into the house on your shoes. My house is mainly tile, and I swear, I just don't know how the tile gets so dirty and full of leaves, etc since it's only me and the dogs living here. I'm gonna blame it on the dogs! LOL I read the Bone Survey results and what I can see, it's good news in that there are more no active lesions/tumors forming. Of course the results were compared to a prior Bone Scan and there were mentions here and there of worsening when compared to prior scans, with more degenerative changes noted and a worsening of the compression fracture in the lumbar area from the tumor that was created from my first bout of cancer, BUT to quote..."the rest of the bones show no evidence of abnormal lytic lesions (tumors) to suggest the metastasis of myeloma". So YAY.......at least I will not have to receive radiation and can go straight (do not pass go....hee hee) to just getting on with the chemotherapy, and see where this takes us. Still waiting to receive the call from my Chronic Disease Fund's Pharmacy to see when I can expect the chemo to get here and start making a schedule for taking it. It's 3 weeks on and 1 week off I remember, but due to chemo brain, I'll need a remedial course in the taking of the coumadin and dex as I can't remember if I still took those on my week off or not. Oh well, please keep the prayers coming and I'll keep you up to date when I know what's up and I will be writing lots more as there's tons of stuff swirling around in this brain of mine......

Here We Go Again.....

2009-03-17T18:59:00.003-04:00

Today I went to have my bone survey done, which is basically a set of x-rays of my entire body so they can see if there are any places in which the Multiple Myeloma Cells have decided to gather and have a "tumor growing Party". Just being there brought back a flood of memories, and I'm thinkin to myself....."shit.....here we go again". The same routines, repeat themselves like an old black and white movie that flutters. I feel like wearing one of those sandwich board signs that says "I HAVE CANCER SO I KNOW THE DRILL"! LOL
The same things happen.....being escorted down a hall by an X-ray Tech telling me to remove my clothes and jewelry, how to put the gown on (that's always a helpful reminder though as there are so many friggin strings and openings, if you don't get it right your Bum or Hoo-Ha will be flashing down the hall. LOL Here's the key for your locker to put your personal items in and be sure to lock it and bring the key with you and when we're done, please remove the gown and place it in the laundry basket when you have your clothes back on. During the body scan it's "Don't Move"....."Hold your Breathe"...."Now Breathe". All of the awkward body positions you have to get into to get the correct angle. The coldness and sterile look of the room. The back breaking hard table you have to lay on and when your bones stick out at your hips, due to no body fat, well, it's not too comfortable. Good thing though is it doesn't last long, as it's over pretty quick but they did have to repeat the upper body head & cervical as I had forgotten to remove my teeny upper ear piercing so I guess I messed up the x-rays from the metal. I forgot the little earring in there so OOOOOOOOOOPS....sorry bout that! My Mom came over a bit after I got home with her adorable new little puppy Abby, so we visited for awhile and then I finished the shredding of old bank papers and other info that is part of my spring fling cleaning process. It's funny that a few of my friends have emailed me and said OMG why are you still cleaning and doing all that hard work after just getting such crappy news? I would love to sound like Martha Stewart and say that's just what you do during spring cleaning, and yes.....that's part of it, but I think the bigger part is the compulsion to not leave a big fat mess that family will have to sort through when I get sick or die. I'd rather leave a clean house with everything in order, with important papers all together and labeled for "easy reading". Guess that's it for now......I will be going to the X-ray facility tomorrow to pick up the results and see what they have to say. My usual MO is to pick up any kind of results and read them myself, so I know what's going on NOW. I get quite impatient about waiting for lab or test results, and again, being an "informed consumer" gives me some time to digest what the results are so when I go to see Dr. Nair (which won't be for about 2 weeks), I'll know what if any questions I need answered. I am supposed to hear from the Pharmacy that dispenses my chemotherapy sometime this week to set up a delivery day, so these results are important to know right away as you can't be on chemo and have radiation at the same time, so IF there are any tumors growing they would want to ZAP them first and then begin chemo. So, fingers crossed there are no Tumor Parties going on so I can go straight to the chemo. Sheesh....never thought those words would come out of my mouth.......ready to get started on Chemotherapy!!! See how the world of Cancer is so topsy turvy, convoluted and crazy?

Wow....Don't know how to tell you this....

2009-03-16T10:48:00.002-04:00

Yesterday was my 10 month Bone Marrow Transplant Anniversary. As you read in my last post I was feeling quite nervous about the "pee test" I had done and had an appt with Dr. Nair last Thursday, March 12th, to go over the results of my urine test. The reason you have a urine test is that MM cells get secreted into the urine so it is a "first line" tell, if your cancer has returned. If any MM cells are found in the urine, they then take blood for a very intensive scrutinized blood test to see what and how many cancer cells have returned. Up to this point, as I have reported to you, all systems were a go, thumbs up, atta girl etc etc etc. I even skipped a months visit at the oncologist office because my urine was coming back with ZERO MM cells. I had this deep down, gut feeling that something was wrong. I could feel it in my bones (no pun intended :) I even experienced my first ever anxiety attack the sunday before I had my doctor's appt as I just felt that something I was wrong. I felt like I couldn't breathe, my pulse was sky high, heart beating out of my chest. It was no fun at all and quite scary, as I've never had an anxiety attack before. I just felt it. I knew. Well, Dr. Nair so sadly reported that yes, once again my cancer has returned. I am so sorry ya'll. I am so angry, and hurt and frustrated. I put myself and my family through the whole BMT process and for what? 9 months basically. 9 months of cancer free life. That's it. It was "supposed" to give me about 3-5 years hopefully. At least a couple of years. There are no guarantees with this horrible ugly blood cancer, as I have found out first hand. I have alot more processing and thinking to do about how this situation is effecting my life and of course my family's. I am again, so sorry. I just ask once again, for your prayers and support. I know I'm beginning to be a real pain in the ass, so I appreciate your patience with asking, but without hope and prayers, I don't know where I would be. I don't have much more to say right now, except that I am going back on my old chemotherapy regime of Revlamid, coumadin (the chemo causes blood clots) and dexamethasone (a steriod that helps the chemo work more effectively), and really just go from there. At this point we do not know how bad (or good?) the situation is until we receive the results of the blood work taken and shipped off to the lab. The results will tell us exactly how many cancer cells have returned and how aggressive it is being. I also am scheduled for an entire body bone scan as the last bout of cancer gave me 2 tumors, one in my pelvis and one on my spine that fractured 2 vertebrae, so we need to see if there are any more "hot spots" trying to grow a tumor. I can't let my mind go pretty much past this point right now. I can literally only take ONE MINUTE at a time and handle that time period as best I can. I will post more and keep you informed and once again, prayers please...with a vengeance. Love to you all

Spring Cleaning.....Outside and Inside

2009-03-07T19:00:00.004-05:00

I'm starting to go on my "Spring Cleaning Spree".....in more ways than one. I wanted to start on my bedroom and I mean REALLY go through it all. Closet, desk, dressers, bathroom......ALL OF IT. By the way, why is it always the bigger the room, the more crap winds up in there. My bedroom is huge......about 20 ft x 20 ft., so there's lots of places " to stick stuff". Basically I'm an organized person too, so I'm really a paradox, because it's really an organized mess. For instance, rather than filing away, say my prescription receipts into a file folder or something, I have them in a pile on my desk. That pile is also next to the pile of insurance papers, which is next the the pile of.....well, you get the picture! This spring cleaning is also just not related to the physical. I'm going through an internal spring cleaning as well, and actually, I prefer the physical spring cleaning! I know I have probably addressed this before, but I've had anxiety about my upcoming PEE TEST that I just dropped off at the lab. I go to see my oncologist this next Thursday and for some reason, I'm having anxiety about the upcoming results. It's like I've said before.....the further away I get from my transplant, the reality is, I become closer to relapse. I think my feeling this way may be for a few reasons, as I've tried to process where these feelings are coming from and why (the therapist in me! LOL). Firstly, since I've been home from the transplant (CAN YOU BELIEVE IT WILL BE 10 MONTHS ON MARCH 15th?), I've seen Dr. Nair every month and gotten the good to go, thumbs up on a monthly basis. This time I've "graduated" and only see him every other month, so now it will be 2 months since I've kept tabs on my body, and that may be a source of some anxiety, having had more time not knowing if I'm doing ok. Another source of anxiety is that I am taking antibiotics for a urinary tract infection, which I haven't had since.......well, if you go back to my very first entry, you'll remember that that was one of the tell tell signs I had MM.....UTI's that kept recurring. I didn't go to the doctor for it though, as Dr. Nair had written me a prescription for Levaquin for just this reason, so as soon I was sure I had the telltale signs, I started on them. But that has me a little concerned since I haven't had one in over 2 years. All of this (physical) spring cleaning though, got me to thinking that I also have alot of loose ends to tie up (everyone should do this anyway.....even if you don't have cancer).....like I need to make a will or whatever that other thing is called (thank you CHEMO BRAIN), I need to arrange for others to be able to access my back accounts, make a list of all credit cards and /or pin #s, internet passwords, etc. and not meaning to sound depressed or morbid, but another thing I want to get arranged and paid for is my cremation. When people die, there's enough grieving going on that the last thing you want to do, is make arrangements, as I know that first hand from my dad dying. He made it so much easier for me and Kate because he too had made prior arrangements and all we had to do was make a phone call and everything was taken care of. I thank him for that, and feel that I too, need to do that as well. Please don't think I'm depressed or anything....far from it actually.....I'm just being a good Girl Scout and "being prepared"...or is that the Boy Scout thing? So, I'll start tomorrow with a good cup of coffee and read the paper and then......spring cleaning again.....inside and outside. :)

Wanted to Share This....

2009-02-25T19:30:00.002-05:00

I found this tucked away in one of my books (yes, I'm actually starting to do a little bit of spring cleaning......the operative word being little) :) and after reading it again, I thought I would share it with you. I guess this is why I saved it!

When the "storms" of life
gather darkly ahead
I think of these wonderful words
that I once read

And I say to myself
as threatening clouds hover
"Don't fold your wings and run for cover"

But like the eagle
spread wide your wings
and soar far above
the troubles life brings

For the eagle knows
that the higher he flies
the more tranquil and brighter
become the skies

And there is nothing in life
we were ever asked to bear
that we can't soar above
on the wings of a prayer

And in looking back over
the storm you passed through
You'll find you gained strength
and new courage too.

For in facing life's storms
with an eagle's wings
You can fly far above
Earth's small petty things.

I'm REALLY Full of HATE right now....

2009-02-20T13:44:00.003-05:00

I really don't use the word "hate". Never really have used it as a regular word in my vocabulary. I'm not saying I have never ever used the word hate, as in "I hate mashed potatoes" (yes....I know....I'm weird) or "I hate watermelon"......(yes.....again...I know I'm weird), so when I think about it, I don't really use the word "hate" very much at all and the only time I can recall using it, is in regards to food items! The last few days though, I have used the word HATE in regards to cancer.....and not even my cancer! I'll scream it right now though....for ALL to hear......I HATE CANCER. In the last week, it has come to my attention, that 2 very close and dear people are dying from cancer, and I am just so angry that yes, it elicited the word HATE from me......numerous times actually. I mean deep down. Firstly, my dear long time and wonderful friend, who will remain nameless here, due to privacy issues, as I haven't asked for her permission to talk about this using her name, has found out that her Mom who has beat this CANCER Monster twice already in her lifetime, has again been diagnosed with a return to various parts of her body and it just doesn't sound good. She (the Mom) is a very religious person and has handled her past bouts of cancer with grace, confidence and courage......which, as I personally know, is a challenge in and of itself. Secondly, a male friend I know, oh gosh, we go back 35 years, has been diagnosed with not only lung cancer, but liver, brain and a multitude of other organ cancers. Kevin, my ex, called to tell me the news and after we got off the phone, I cried for about 2 hours straight. Really cried. I love this guy....we go back so far and have so many wonderful times and memories together....too many to even remember! The news of these 2 folks battling this horrible disease, just made me so angry and brought the word HATE into my brain. My heart aches for their present and future suffering. My heart aches for their families who are so powerless over this disease. My hear aches because these are good people and yet are consumed with this bad disease. I just had to write and get this out as I cannot stand to keep this HATE inside of me. We, as a people, need to reach out to each and every person who we love and treasure and make sure they know that we do. That's the only weapon I know that can battle cancer. Being together. Showing Love and Support. Talking and Sharing. As a present Cancer survivor myself, I ask that you do these things. Reach out and Hug who is important in your life. Tell them you love them. That's the only internal weapon we have.

Happy Anniversary to Me......

2009-02-13T19:56:00.002-05:00

On February 15 it will be my 9 month post Bone Marrow Transplant Anniversary! YAY! I can't believe it has been 9 months already. I am feeling so wonderful, it's hard to believe I was feeling so crappy and literally near death, just 9 short months ago. I'm not gonna lie....it was a hard rocky road I traveled, being on chemo for 14 months prior to the transplant and then the transplant itself, but the rewards I am reaping now makes the journey so well worth it. All of the suffering, the pain and other unmentionable side effects were killers, but all in all, I came through it oh so well, and except for some fatigue here and there and of course the back pain I live with, I am doing so great right now. I am just the most fortunate woman in the whole world and enjoying every new day I have been given. Not a day goes by that I don't give thanks for my family who was taking each and every step with me and never left my side. I pray for all MM patients that they can and will be as fortunate as I have been, in their battle with MM. I am curently "mentoring" a gentleman I met, as he too is a patient of Dr. Nair's (there are only 3 MM patients in his whole practice.....that's how rare this cancer is) and this fellow is also going to Moffitt next month for all his tests and then the scheduling of his BMT, pending results of all testing. Mom and I met with him and his wife for lunch a while ago when he was first diagnosed and kinda walked them through the process of what it will be like, but now that he has his dates all lined up, we'll be meeting again before he goes to give them all the "ins and outs" of life as a BMT patient at Moffitt. I am so glad he is going there as I know who his caretakers and doctors will be so I rest assured that he is in wonderful hands. I feel grateful that I can be of some help to someone going through this as "Multiple Myeloma World" is a scary place to live and it's nice to have a friend along the way. The only thing that sneaks into my consciousness every once in a while is knowing that this wonderful remission will not last forever. You cannot beat Myeloma. It's the devil in disguise. However......I did join a telephone conference sponsored by the LLMS (Leukemia, Lymphoma and Multiple Myeloma Society) last week and heard an MM doctor talk about new and upcoming treatments for MM and when the conference was over I was almost elated (geez....I don't think I've ever used that word before!) at the information he discussed. There are new drugs since I was even diagnosed (2 yrs ago) and many more on the horizon to deal with any relpases that may occur so it made me much less afraid of what the future may hold. I really don't plan on relapsing anyway (wink wink) but I filed the info away so when the time comes I can discuss my options and know what I am talking about. Always be an informed consumer!! So take that MM (punch punch)......you don't know who you messin wif! LOL

Waxing Philosophical, I guess......

2009-02-12T15:56:00.002-05:00

The other day I was going thru one of my many "cancer" notebooks that I've kept since I started this journey and came across something I had written in one of my more philosophical moments. This is what I wrote verbatim: " How many times in your life can you look back and see that when things that looked like disasters at the time, turned out to be incredible gifts and became pivotal turning points in your life? We ALL have experienced this so we KNOW this. So I think the "trick" for living a clear life with calmness within and without, is to talk to ourselves and remember to remind ourselves AS THE PERCEIVED DISASTER IS ACTUALLY HAPPENING, that here is another "gift in the making" coming our way."
Easier said then done I know, but......
Nuff said.

Yep...Still Here...and I'm One Grateful Gal.....

2009-02-02T19:07:00.004-05:00

These last four weeks have really been a blur for me. Lots of personal "issues" going down around here, but the negatives are slowly but surely turning into positives. I really don't keep secrets from you as I have always been open and honest about what I write, but the "issues" I am talking about are not mine, so as not to intrude on the privacy of others, I will not talk about them here. I only mention them to you now, as an explanation and so you would understand where my focus has been lately, but all seems to be coming back to what I call my "new normal". About time!! I had a Dr. Nair appt a few weeks ago and having had done the joyful "pee pee" thing the week prior to the appt. I was anxious to see him and go over the results as well as having my bloodwork done at the office, to see what was up with everything in my body these days. GOOD NEWS FRIENDS!! The pee pee contained not even one ugly little MM cell. NONE. NADA. ZILCH. ZERO. I am so proud of my body I just can't stand it!! It has done such a terrific job engrafting all of those little baby stem cells they put back into me. They all did their job and went to their assigned stations and started to work as soon as they arrived! How much better can that be? Dr. Nair and I spoke for quite awhile, and he told me that I am his BEST result ever in Multiple Myeloma treatment. He said that it is quite common to be in "remission" but test results will detect trace amounts of MM cells, and I have none. In cancer talk there are various categories of remission......the top 2 being called Complete Remission which means no cells to be found and the next category down is called Partial Remission...which means they can't find any active MM cells, but they do detect some MM cells. I am just so very fortunate that I have taken so well to the treatment of first the Revlamid and Dex to prepare for the BMT, and then the BMT itself. I know in my heart that I could not have done this alone.....my medical team, the hospital team, my family, my friends, and to all of you and people who I have never even met, praying for me and my recovery. It's really unfathomable and overwhelming when I think about it. I am truly the most fortunate and grateful person alive. Instead of fighting for the right to live my life, I've been given the chance to actually live it once again. How awe inspiring! It makes me cry when I think about it really. To literally face death and being given the opportunity to be able to walk away from it makes me really re-assess who I am, what I should do, where I'm going, and so many many more things. I meditate every day and also pray for guidance and strength. It's all still so much a work in progress.....the way I feel about my remission and what I will do to make the world a better place. When I first got home from my BMT I was seeing Dr. Nair once a week for the 1st 2 months, and then "graduated" to every other week for awhile, and then to once a month and at this last visit, he said that he only wanted to see me every other month now. EEEEEEEEEEK!! My doctor is slowly cutting the umbilical cord! He laughed when I told him that but it's true really. There is a bit of anxiety associated with the fact that you are not seeing your doctor as often. Of course it's a GREAT thing, but when you think about it, I have been seeing him basically, except for a few months, once week since April of 2007!! That's a long time. We have a relationship. So now the little bird (me) is slowly being nudged to the end of the nest and looking down and seeing how far it is from the top of the tree and wondering if I really do have the wings to fly. Him and his staff have supported me and been there for me through the worst of times. I know it must be gratifying for him to "discharge" patients as that means they are well enough to only come back for annual checkups which of course is ultimately my goal as well. It's this middle ground I'm still feeling my way around. Kinda like being a teenager I guess. Not a child and not a grown up yet. Yep....that's me for now :)

Everything's Gonna be Allright.....

2009-01-24T18:56:00.002-05:00

Wow......it's been almost 4 weeks since I have written, yet it seems like decades ago! Why does time seem to pass so quickly in some instances, and yet in other instances, just seems to crawl slowly? I suppose it depends on the situation and the person involved. Not writing has not sat well with me, and so once again, it has come to my attention that indeed I am a writer.....a list maker.....a note taker.....anything having to do with pen and paper (or here a keyboard) must have my name on it! So very much has happened in these short past 4 weeks that it's hard to figure out how to fill you in. Firstly, I hope you all had a wonderful holiday with family and friends and that the New Year brings nothing but health and happiness for all. The beginning of a New Year always represents a "new" beginning. Of course we all know that each new day is really a new beginning, but the written calender is a concrete reminder when we actually have to turn the page and start writing a brand new number on the checks we write! Most people tend to make "resolutions"....ways they feel they can better themselves in this brand new year. Stop smoking.....lose weight.....exercise......those I guess being the most common, yet I've never been one to make New Year's resolutions. I've always kinda thought they were a set up for failure actually. People tend to be really tuned in to the resolutions for the first few weeks, and then the ole' behaviors kick back in and the next thing you know....oooops.....there goes my resolutions. Then you start to beat yourself up for not being able to keep the promises you made to yourself and that in turn, leads to self defeating talk, negative emotions, low self esteem etc etc. Truthfully, I can't be bothered with all that nonsense. If it works for you I say....hooray...go for it, but in my experience it usually doesn't turn out that way. I belong to the "one day at a time club" (no, I'm not in recovery....unless of course you want to count cancer), but it only makes sense to me to literally take one day at a time for your goal setting frame of mind. If you look long term....well, that's a long time. But one day is only one day....24 hours...so the time frame is pretty manageable in my book to set and meet any goal. I don't even like it when I make my "to-do" list for the day and don't cross off all that's on my list! But how could I really? Some tasks, goals, whatever you want to call them, perhaps took longer than I thought they would. Maybe if it was a cleaning task I set for myself, I ran out of (fill in the blank) and couldn't finish it. Life is not concrete. Life is an ebb and flow. Life changes literally from minute to minute, so how can you possibly tie yourself up into something not leaving room for any deviations? So that's why I'm not a resolution person but I AM a big goal person......setting goals is awesome......completing them even awesome-er (spell check that why don't cha LOL) but don't beat yourself up if your goal is not met TODAY. Remember.....EVERY DAY is a new beginning....not just January 1st.

All's Quiet on the "Southern" Front....

2008-12-27T13:34:00.002-05:00

How was everyone's Christmas? I hope that ya'll had an awesome holiday celebrating with family and friends. This morning I went from a houseful of people to just me and the dogs! Very quiet now, except of course for the occasional barking when the dogs get a wild hair to get crazy or when they spot a squirrel in the yard! Kate, Dicky, Chris and Sarah and then Kevin and both our girls left for the Palm Beaches this morning, where they all live. As I told you, it was my year for xmas so everyone came up here to celebrate and they left today as everyone has a ton of stuff to do. First I want to wish my "Baby Sawah", my niece Sarah, a very happy birthday today.....she's the "baby" of the family and time just flies by when I realize she is now 23! She's having a shindig tonite (isn't that what we do in our 20's? LOL) so they have to get ready for that today so they wanted to hit the road pretty early as it's a 2 1/2 hour drive to Jupiter. Kevin and Ashley and Lindsay left for WPB too as they're going to Kevin's house for a few days since Linz is in from Vegas and wants to see her other Grandma and other family members, while she was at least in the same state! They'll be back on Monday afternoon and stay here until Linz and Anthony head back to Vegas on NY's Eve. They'll get back to Sin City sometime in the afternoon in plenty of time to get home, shower, chill and then go out for NY eve celebrating! Kinda cool to be spending NY eve in Vegas, as either NY or Vegas is "the place to be" on NY eve if you like the party thing goin on. Me? Shit....I'm lucky if I stay up late enough to see the ball drop anymore! LOL Guess my partyin days are over rover!! But who knows what the future holds.....hey....I might hook up with a handsome, rich man some day and get a second wind for NY eve.....hey , stop laughing.....you never know!
We had a wonderful Christmas this year, and I am and always have been, the "designated" prayer person, and I tried to make it short and sweet, but had to spend a minute or two on how grateful I am to see another Xmas, and how everyone sitting at the table with me, was responsible for getting me through that time in my life. I tried not to cry, but did a little, as the feelings about that run so deep. On Christmas Day it was exactly 28 weeks since my transplant. It's funny that some days it feels like it was sooooooo long ago and on other days, it feels like it was just like yesterday......I wonder how/why things are like that? I'm sure you know the feeling about something that has happened in your own life. I just know that every day I have IS a gift and I just want to scream that from the tops of the world, to remind people that you only have today, as there are no guarantees for the rest, so stop and enjoy....let the little things that bug you roll off your back and don't give them a 2nd thought, be kind, be grateful, be calm and just remember the Serenity Prayer (short version: if you can do something about it....do it and if you can't....let it go). I've posted some Christmas photos of me and the family....and a dog or 2 snuck in too :) Be back soon!

To all a Good Day.....

2008-12-25T08:43:00.002-05:00

MERRY CHRISTMAS

You are all in my thoughts and prayers this wonderful Christmas Day!

Much Love, Peace and Wonder.....

Santy Claus is Almost Here.....

2008-12-22T09:55:00.002-05:00

This will be my last entry until after Christmas, as I don't see myself having any spare minutes to write much until after all of the festivities are over. So I sit here and "talk" to you with a hot cup of coffee (on my second one) and the morning paper 1/2 read, (I'll get back to it) and my laptop where else but on my lap (boy they named them appropriately, didn't they?...LOL).....because I had the urge to write. This is a really special time of year for me. I have always LOVED Christmas....my family has always been big on Christmas.....so maybe it's genetic. I love EVERYTHING about it.......the tree.... the music.....the wrapping paper......the sparkles.....the (somewhat) cold weather, and today the HIGH will be 60 and low's 40 (YAY), but I hear Christmas Day will be back into the low 80's ......and that's a BAH HUMBUG. Oh yeah, I lost track of all the things I love about Christmas, but what I love the most is the togetherness......the family time.....the laughter......the games/cards/fun.......and the giving to each other. The thoughtfulness that goes into each gift given is important in our family, but of course we do give our share of "joke" gifts too, which I'll tell you about AFTER we open up presents! I am feeling that this is a landmark Christmas for me for some reason. Maybe it's because the last 2 have been so miserable and this Christmas feels the way it used to feel. I really have no other reason to feel that this is so special....except of course, we have all had a helluva year, thanks to me :) so we do have a special reason to be grateful and thankful and to celebrate the Universe this Christmas. I just want to take this time right now to thank EVERYONE in my life (some of you I know and some I have never met),for being so supportive and loving and caring and concerned this past year. I am now 7 months POST Bone Marrow Transplant, and without all of your thoughts and prayers and support, I know I could not have done it. Every email you send, regular card, e-card, comment on my blog.....whatever....translates into a pat on the back or I hear "go get em Jan" when I get them, and in turn it makes me smile knowing I have you in my corner rooting me on, which then in turn increases all those healing endorphins that make me stay strong and determined to fight any way I can. So THANK YOU.......You are all my gift, for which I am thankful this season. To change the subject just a hair.....HA...I crack myself up......I am posting photos of the "new do" I've got goin on, as some of you ask about how my hair is doing (like it has a life of it's own.....LOL).....so I'm going to post some photos taken yesterday of me (Linz took them) and of the house all Christmassy. May you have a wonderful, blessed Christmas and I'll talk to you again between Christmas and New Year's.
Love and Peace to All

Gettin There......

2008-12-15T21:27:00.002-05:00

Almost done with all the "pre-Christmas" things on my "to-do" list, which mainly consists of finishing cleaning the house, and getting down all the X-mas platters, serving dishes etc etc. to make sure I've got everything I'll be needing. I finally finished the tree decorating (whew...it's a big un) and have completed decorating the house, so that's all finally done. I will finish cleaning the patio tomorrow and the sliding glass doors (my house basically has no walls to speak of.....I'd say about 2/3 of my house walls are sliding glass doors that look onto my wooded yard, so when I say I'm doing the sliding glass doors, we're talking ALOT of glass folks! I will be all finished up by tomorrow though, (come hell or high water) LOL..... so then on to making the holiday menus, a grocery shopping list and my baking shopping list (oh yum......one of my favorite things to do around xmas), and then I have to finish up my gift shopping and of course the "stocking stuffers". Lindsay will be here on this coming Thursday the 18th and will be here until New Year's Eve, so I'm really excited to see my "baby". It's been 3 months since she moved to Las Vegas, and that's the longest I have ever NOT seen her, so I'm so looking forward to having her home for a few weeks! My ex, Kevin is also coming up for xmas and will be staying here with us for about a week, and it will be great having him here too. Kevin and I have a special relationship I think, as we get along great, and he loves my family and my family loves him, so it's turning out to be an awesome xmas, I do believe! :) When my family gets together, we all just have a great time, and we play games and just hang out, so this has all the "makings" of a super xmas for us all. I am just so so grateful and thankful that I am feeling so well these days, and up to the task of having xmas here and all the things that go along with that, as the last 2 christmases I have been really too sick to even enjoy xmas, let alone decorate and host it. My stamina is incredible for someone just 6 months post BMT, and speaking of which, I received an email from the ASH, which is the American Society of Hematologists about their annual meeting which had lots of great news about MM, and I plan on calling Dr. Nair and talking to him about a few things I read, and getting some clarification and I also have a few questions for him, but as far as I can tell, all's well on the MM front, and this damn disease already took 2 holidays from me and I'll be damned it it's going to take another!

Started......but not Finished

2008-12-12T09:26:00.002-05:00

I finally finished all jewelry related tasks and got all items put away, which is a really good thing considering I had practically every flat surface strewn with all my materials I was working with! There's even a place to sit down and eat now, without carefully moving things around! I did have a Dr. Nair appt on Wed 12/10, with the usual bloodwork drawn and again the CBC labs all came back normal as it has been.....even those pesky little platelets. My RBC's still haven't reached normal levels yet, but they aren't low enough to receive a shot to boost them, which I have had to do in the past, so really all is well in my little corner of the world. In my once a month visits now, they always draw 2 vials....one they test right there in the office (the CBC) and one they send out to a lab that does the "cancer" bloodwork thing. He also gave me a scrip for my dreaded once a month "pee" test, which I'll have done before my next appt in January. That's the test I have anxiety about, as the dreaded little Bence Jones (cancer cells) guys usually show up there first. Again, once you have cancer, you always have cancer......whether it's active or not, it is always there. Just something to live with. It sucks......and oh well for me. Dr. Nair said he thinks I look really healthy, and even despite this cold I STILL HAVE, my chest is clear and he's really happy with how things are going since my transplant. I will be 7 months post transplant on 12/15!! Even though I have been really busy, which is a good thing, when I stop and get quiet, I realize I do have this little knot in the pit of my stomach and again, I believe it goes back to the thinking that the farther away I get from transplant, the closer I get to relapse. I want you to understand, that I'm not focusing on that, or dwelling on that, or obsessed by that......it's just a fact that it will happen. I belong to a few websites about MM which send me lots of great info about studies and clinical trials and new therapies for MM, and the latest things I've read look very promising for me. The latest study indicated that the majority of patients treated with my chemo and the BMT have a 3 year period before relapse occurs. That's a long time folks in the MM world. Prior to these newer drugs and treatments, if you got 1 year, you were doing good, that's how ugly and aggressive this kind of cancer is. So, I plan on even extending that 3 year goal personally :) I'm thinking that maybe that little knot in my stomach is just my way of reminding myself that every day IS a gift......don't get cocky and forget you have MM as when it does rear it's ugly head again, I will be somewhat prepared, rather than having been in denial and it hitting me like a ton of bricks when it returns. Quite a tightrope I have to walk huh? On the one hand, if I think about it all the time (not my style anyway), it prevents you from living your life in the present, and on the other hand if you deny it's existance, when (not a question of if....it is a when) it does return, I would be so blown away, it would be like getting the cancer news all over again. So it seems as if my only choice is to be stuck in the middle of constantly acknowledging it, while also actively living my life. And who said I couldn't juggle? LOL Physically I can only juggle 2 things, metaphorically......oh.....about a dozen or so!! I started putting up the tree yesterday, but had to stop because of oh yeah....FRIGGIN LIGHTS! LOL....I have to say, I have been very lucky re: the light thing for a long time now. I've had the same lights for about 10 years....which may be a Guiness World Record (I'll have to look into that)....but alas, my luck ran out this year and some didn't work...some only 1/2 the strand.....you know the drill I'm sure.....so after screwing around with strand after strand and replacing bulb after bulb, etc......I finally said screw it....tossed the ones that didn't work and will be running out shortly to get more lights for the tree. I say I've had a damn good run with those lights, so I'm not complaining, except I did waste about 3 hours trying to get them to work before finally tossing them! I am stubborn, aren't I? That quality serves me well sometimes.....and sometimes not! LOL SO.....off to get more lights, and when that's done, I'll concentrate on decorating the rest of the house, shopping and baking.....the FUN stuff! I'll take a photo of the tree when all the NEW LIGHTS are on.....and if I didn't mention it, my tree is 13 feet tall, so I have a shitload of lights to buy and hang! LOL.....I know what the rest of my day looks like.

* The Cruise *

2008-12-05T18:56:00.002-05:00

Wow.....where to begin? Firstly, I want to tell you that we all had the best time EVER on this 8 day Cruise! Just the facts ma'am....just the facts......first! The ship was called the Carnival Liberty, and is the largest in their fleet thus far. Beautifully decorated.....11 floors......6 (or more) Hot tubs.......3 huge pools with twisty curvy slides.....spa......gym.....mini golf course.....basketball/volleyball/handball etc ball courts.......choices of many dining areas.....casino........choices of bars (ie piano, disco, jazz, oldie goldies, you name it), all different kinds of bands, vegas type entertainment, and I have only listed some of the amenities, as there really are too many to list. In our cabin each evening, was a list of "Events" for the next day and they started at like 6:00 am and ended with the last thing starting around 1:00 am. If you are the ambitious type you could literally be scheduled from the minute you wake up till the minute your head hit the bed and never do the same thing twice the entire trip! The beauty of a cruise, in my opinion, is that you can be as busy as you'd like or as unbusy as you would like. You can join in any, all or some events or you could grab a book, lay on the deck and read, nap, or walk around and people watch, swim, jacuzzi or whatever your mood dictated you do. I truly believe, especially for the money, cruising is the best vacation you could choose, because of all of the options available. Our ports of call were Puerto Rico, St. Thomas and St. Maartin and again, when arriving in your port, you had a choice of at least 15 different "excursions" you could book (all reasonable I thought), from just a tour of the island to riding horses on the beach, to shopping......again......so many choices to decide on. Or...you could not even get off the ship if you didn't want to (although I don't know why you wouldn't!) I especially think it's a great vacation for alot of people (ie family get-togethers, birthdays etc) as you have the freedom to do what you want, yet meet up with the others at a designated time to do something together. All together there were 9 of us and everyone did what they wanted to do when they wanted to do it......and that included dining too. OH THE FOOD!! LOL......ANYTHING you could imagaine and more and your choices of sit down dining for all 3 meals OR a buffett for all 3 meals, or the Burger/sandwich/mexican/sushi/other stations that were open 24/7.....and let's not forget room service, which cost nothing extra at all. We had 2 pots of coffee waking us up every morning at our requested time (and not a minute late either) and more than once we weren't hungry when it was time for "sit down dining room time" so we'd grab either the late nite buffett or order room service (desert included...and I mean warm cookies and milk!) Anything and everything and as much as you want was available. I think Carnival Cruise Lines to needs to call me for an endorsement, as we all truly had such a great time and I really can't think of a better way that gets everyone's vacation needs met in one place. A highlight at our St. Thomas port was that 5 of us chose to take a water taxi and bus to go snorkeling on St. John's for the day and if you've ever been to the caribbean you know that there are NO WORDS to describe the beauty of the waters. Colors of blues and aquas you never dreamed of and of course crystal clear. The water was a bit cool for me, but I slowly got myself in and after that it was fine. I hadn't been diving in quite some time, so it really felt good to get all suited up and spend some time underwater. Nothing like cruising around underwater, looking at all the gorgeous colors and types of fish and coral and rocks to appreciate the wonders of the Universe. Truly an awesome feeling. I'm adding some photos from the cruise and in them you'll see me and Kate and Dicky, and my Uncle Tom and Patty, and Mom and Van and Dicky's sister Terry and her fiancee Bill. I am looking forward to booking my next cruise, so anybody wanna join me? Oh yeah......I walked away EVERY NIGHT from the BlackJack table WITH money in my pocket (theirs.....not mine) and even won a seat at a black jack tournament (my first ever).....I was in the #1 position for about 1 1/2 hours. WOO HOO! Now how can you go wrong with taking a kickass vacation AND coming home with money you've won?

Finishing Up Loose Ends.....

2008-12-03T09:44:00.002-05:00

Today will be spent tying up loose ends, regardless of how I feel. I have always been the kind of person that does things when they say they will and a pretty much punctual person, yet my time management skills since transplant, have left something to be desired and then coupled with what has truly been a packed schedule, I feel that I am "under the gun" so to speak. My priority today is to complete all my custom orders and get them out in the mail tomorrow. Generally, when I take a custom order, I ask for 7-10 days to complete. What happened this time was that I had 3 shows in a row, then was home only 4 days, then away on cruise for 8, and now just home for a week, but then Thanksgiving and a horrid fever- running cold, so TODAY no matter what, I am finishing up to get this off my plate and deliver the goodies to my customers, so then I can begin the next task of getting the tree up and focus on Christmas, which is here this year. We are having a "cold snap" again this week, unusual for us Floridians that our cold weather lasts more than a day or 2, but while we were cruising, here at home it was cold the entire week, and now again we are cold for another week. YAY! When I got up to get the paper about 7:30 this morning, if I didn't know better, I would have sworn it snowed here last night!! We did have a rare "freeze warning" so it got so cold, that my neighbors entire roof and front yard was pure white, like it had snowed! Really pretty! When I got the paper it was a nippy 43 degrees. I'm sure for northerners reading this you're thinking "WHAT?!?!...that's spring weather" but for us down south, it's pretty nippy and time to start the fires and get some hot chocolate going on! So after today, I'll begin concentrating on the Holiday "stuff" to do......like I said for the 1st time in 2 years, if will be here as in the past, Kate and I would alternate holidays and take turns with Thanksgiving & Christmas, but because of my cancer issues, she was gracious enough to host it for the last 2 years, and I did not decorate, which broke my heart, so even though it's alot of work, I am really looking forward to decorating, baking, and putting up our 13 ft tree! Well, "times-a-wastin" (wink wink).....so off to wrap things up. I'll be posting some cruise photos with my next entry, so get ready for adventures on the "high seas" :)

Giving the Ole Immune System a "Test Run"

2008-12-01T20:06:00.002-05:00

I mentioned I thought I has getting a cold......well let me correct that. I DO have an OUTRAGEOUS cold right now.....the whole tamale too. Head ready to explode and making an actual banging sound......a virtual snot manufacturing company, aching in every joint of my body AND I'M RUNNING A FEVER!! Now for the good news.......I feel better today than I have for the last 3 days, so in essence, I believe I am healing from this thing so that means I have an actual IMMUNE SYSTEM that is working to fight off this thing! Isn't that wonderful?!? Back during Bone Marrow Transplant days a fever was considered to be 99.4 and I got up to 101.00 on sunday and I'm here to tell the tale and feeling a "titch" better, so that means all is well in MM world and my body is fighting off the things it darn well should, but couldn't at one point. So when looking at the situation through the MM glasses I am forced to wear.....it's PARTY TIME THAT I GOT SICK AND COULD HANDLE IT! YAY! Never been so happy to be so miserable!! LOL Only drawback to feeling shitty is that I don't feel well enough to do some things I should be doing, but then again.....learning to listen to my body is a new skill for me and I'm learning to do it, so I am doing nothing but watching TV and writing to you right now. That's all for now folks...just shot my wad of energy, but will be back very soon as I have lots of rumblings going on inside and want to share with you. Love to all

Wakin Up & Smellin the Coffee......

2008-11-29T09:50:00.003-05:00

I'm slowly working on my 2nd cup of coffee right now, slowly going thru the newspaper and slowly deciding to make another blog entry since I have so much catching up to do. You'll notice that the operative word in the above sentence is SLOWLY......dang.....mornings are so crappy for me and cold mornings just add to my slowness!! Not that I'm complaining......far from it.......I LOVE our Florida COLD WEATHER, and it's been perfect lately.....high in 60's and low in 40's... WITH the sun out...that is stunning weather, and if I could have it my way, we'd have that kind of weather 6 months of the year! Mornings just find me very achy, bones & muscles yelling at me, but hey...small price to pay for having a life to live! I have had a whirlwind of a life lately too, huh? First 3 Jewelry Shows in West Palm (and for those of you who ordered from me....all orders will be in the mail by the end of the week).....then home only 4 days and then left for an 8 day cruise to the Caribbean, and then home for 4 days and then Thanksgiving and the day after was my daughter Ashley's 28th Birthday. Sheesh.....slow down the world for a minute, please. Just for a sec to catch my breath!! Well, no moss will grow under my feet, now that I've been blessed with a "second chance", but I am starting the beginnings of what feels like a cold coming on, so that I'm sure is the Universe's way to say SLOW DOWN CHICKADEE. Which I plan on.......therefore....lucky or unlucky you (LOL).....I'll be slowing down and writing about some things going on is this feeble little chemo brain of mine. Hugs & Peace

To Be Thankful......

2008-11-28T13:39:00.002-05:00

I have so many things to catch up on and share with you, but the overwhelming topic swimming around in my mind (and heart) is "Thanksgiving" and "Thankfulness" right now. I'm probably going to sound sappy and like I should be writing for Hallmark cards, LOL, but yesterday (Thanksgiving) was especially special for me this year. I've always been the "chosen" person to say grace before the meal, and yesterday was no different. I was warned, in a joking way, of course, not to go through the entire litany of all that I am thankful for this year, as dinner would have gotten colder than ice if I had! I was sad though, that entire family wasn't present for the meal like usual, but we have only been home from our cruise for 4 days when Thanksgiving came around, and we didn't want to turn around and go back to West Palm for one meal, having just been gone and with all of us being together for an 8 day cruise. (LOTS more on the cruise with photos later)!! So Thanksgiving was at Mom's with Mom, Van, me, Ashley and Kevin this year. We did get Linz and Kate on the phone though, for the "drawing of the names" for Christmas gifts, so they could be a part of the process, while we were drawing Live! That's also something new for our family starting just last xmas and now this one, BUT we are planning to go back to the "old way" of doing things next year. In all years past, we all just all bought presents for everyone and had a field day. Since the economy has been so crappy, Kate starting her own business, me with all my medical bills, and really lots of other reasons, we reverted to name drawing, which really no one likes, but hopefully this is the last year we'll be doing it, and then go back to buying presents for everyone. This way we all have a year to re-coup, save some money and go back to the way we love to have x-mas......everyone buys for everyone! But back to my Thanksgiving thoughts.......I think that it's common to give "lip service" to saying "I'm thankful for this or that", but when a person is faced with what is truly life changing events, it makes one really push the "PAUSE" button and slowly think through the events of the year, become quiet within, and listen to what your heart is telling you what you are thankful for.My list is actually quite endless this year......and I feel that I have always pretty much been the kind of person that has recognized and given thanks for all that I have been given in life, it is only human to "take advantage" of all that any of us are blessed with and not truly recognize and name what we are thankful for, both big and small, but for me on the #1 all time "Thanksgiving" hit list is FAMILY. I have always LOVED and more importantly, I think, LIKED my family. We all are so funny and smart and laugh and just enjoy each other, yet this year my family's attributes that I so adore and feel fortunate for, were there for me a thousand fold and more. I can truly say I OWE MY LIFE to my family. I cry as a write this, as the deep deep gratitude I feel can become an overwhelming feeling for me. I don't know that many people who are as fortunate as I am, to have their entire family literally put THEIR lives on "HOLD" the way mine did for me. I've been sick for so very long and they stood, walked with, carried me, talked, listened, and more, this whole time and I NEVER felt alone......NEVER. They encouraged, cajoled, kicked me in the butt when I needed it, you name it......my needs were met, even when I didn't know what they were. I know I can truly count on my family to be there for me no matter what. Now please.....how fortunate am I? I can honestly say I AM the the most fortunate person in the whole universe and extremely thankful for my family. We all tend to get caught up in the material things of life sometimes......cars, homes, toys, etc.....but they won't be with you during the hard times, cheering you on....it's your family that will be there. I just want the whole wide world to know, that my family is sooooo awesome, something that is so deeply engraved in my heart. I will never be able to say it enough, and there really are no words adequate enough to express how very truly grateful and thankful I am to have these wonderful people chosen to be on this journey of life with me. My Family.

The "Pee Pee" Results.... :)

2008-11-12T20:35:00.003-05:00

Today I had a Dr. Nair appt to go over the results of my 24 hour Urine test which I dropped off on Monday and the results would indicate if any Multiple Myeloma Cells might be creeping and sneaking around in my blood system BUT my results came back a BIG FAT ZERO! Yay for my pee! I was just SOOOOO excited to hear this news today. As a matter of fact, my entire blood counts are looking awesome and even those pesky little platelets have already reached 211 according to today's test and as I've mentioned before, the normal range starts at 140. So some really really great news today which makes me a very happy gal. Lately though, I've been having just a low grade anxiety around "relapsing". I know this is the nature of my disease and something I will have to learn to live with, although "learning to live with it" is an even ludicis way to look at it. How do you "learn to live" with waiting for the news that your cancer has become active again? I don't think you really do ever "learn" that. I guess it's the ole "waiting for the other shoe to drop" feeling. It's not all encompassing or too invasive, but it's been there and I recognized it and gave it some thought. In several ways lately, my attention has been drawn to the fact that more than a few people have relapsed around the 1 year mark, so now it's kinda weird, because at first I was counting the days AWAY from my transplant and now I'm counting days TO the 1 year anniversary mark, and that's 1 thing I think, that has been contributing to "goin down the road" of thinking about relapse. Again..it's not consuming me or anything....just a nagging little thought that creeps in now and then. My life is really great right now.....I'm physically feeling better than I have in more than 2 years now, I'm busy and excited about Jashlin Jewelry, and for the first time in a long time I'm setting goals and working towards them. My life was so uncertain for so long, that thinking about setting goals, let alone setting them, was near to impossible for me. It's kinda difficult to frame goals in your mind and outline steps to reach them, when you're not even sure whether you will live or not! I've always been a goal setting kind of person, so living my life in limbo for so long was hard for me. And getting back to my previous line of thinking.....now that I'm only a few days from being 6 months post transplant, I guess what I'm trying to say it's the time now, when I am getting farther and farther away from my transplant and knowing my kind of cancer is not "curable" and I will inevitably relapse, the farther away from transplant makes me closer to relapse. Am I making any sense to you? It's all kinda jumbled in my head a bit, but I hope I am being clear in expressing myself and this fear. More on this later...... On a lighter and happier note.......well, besides getting the BEST medical news ever today :) I am leaving for an 8 day cruise in a few days and couldn't be more excited! I'll be really busy tomorrow with organizing and packing and doing those "last minute" stuff that seems to come up before a get-away, but I am sooooooo looking forward to a week on the "high seas"....island hopping.....watching las vegas type shows....chillin....sitting on the deck with a good book....playing some blackjack...... going to the clubs......taking some shore excursions and most of all, just spending time with my family. I might even treat myself to the spa for a thing or two......no hair appts for me though LOL I'll be taking the laptop with me so will check in with you during the week. peace & hugs

Wow.....being the Early Bird today!!!

2008-11-10T09:52:00.002-05:00

Ha...........and you didn't believe me did you? Not that I can blame you, since I have said in the past "it won't be a week till I post again" and it turned out it was a week, but NOT this time. I told you I was going to prioritize and I did. I'm working on the last bit of coffee and "perusing" the daily paper, then gonna jump in the shower and run the "PEE CONTAINER" to the lab!! You walk in the lab with this can that resembles a rather large plastic gas can, but of course it can't be non-descript. It's an orange neon color that's like walking in with a flashing sign saying "I've got PEE......I've got PEE.....I'm having my PEE tested.....I'm having my Pee tested". I don't personally care one way or another, but it does crack me up, the peripheral "stuff" that goes along with this cancer crap. God blessed me with a warped and twisted sense of humor for which I am eternally grateful :)
First things first......Let's all stand up and sing HAPPY BIRTHDAY to my sister, KATHRYN LYNN TANCIG (aka.....Kate.....Kathy......Aunt Kate) She deserves the BEST of everything as she truly is the most loving, caring, thoughtful, fair person in the entire world and anyone who knows her will back me up. Of course I'm a bit prejudiced being her sissie, but it's all true :) HAPPY BIRTHDAY KATE! After dropping off the PEE CONTAINER ( I think I like capitalizing that word), I'm gonna run a few errands and then come back and hit the studio. What is also time consuming with having an "internet" jewelry business is the importance and time it takes to photograph and write a description of the items. I think jewelry is a rather "tactile" thing. Everyone wants to hold it up and look in the mirror etc etc and on the internet you can't do that (I'm sure in the future someone will figure out how to do that!!) so in the meantime, I have to take some kick ass photos and be very descriptive in describing. (that's redundant!) It really takes forever to get the photos great and clear with no shadows and weird chit in there and then to go over every piece and basically describe it bead for bead, takes me a long time. I suppose I'll get better at it and quicker the more I do it, but for now it takes me a long time. And then AFTER taking the photos....then you hae to upload them into the camera....crop and "fix" them, name them, watermark them (for copyright purposes.....ha.....I WISH a big time designer would find me somehow). So between working on filling my WPB orders and trying to get some new stuff up on the web, well....I'm a busy gal till I leave for the cruise. Also gotta squeeze in a doctor appt for an IV session and seeing my awesome Dr. Nair, running to the bank (oh yes I need some gamblin money and spending money for some cool "island shopping"!) and just the usual last minute "before a trip grab stuff "shopping I need to do. I can either do that today or on Thurs. as I'll be out and about when I take my brother Greg to the airport that day as he's flying back to Colorado for his winter job. Sometime between now and noon Friday when we leave for WPB I'll throw in some laundry since having some clean clothes to wear might be nice too :)
When I was at Kate's last week it was Halloween and my nephew Chris had to dress up for his job so I thought I'd have some fun too. I used to have a Halloween Party every year to go to when Colleen had her annual BASH, but no more, so I've posted some Halloween photos of myself I just had to take!! Talk to you tomorrow...... and oh yeah.....sometime shortly I'll post a link and some photos of my jewelry for sale, but here's just a few photos to start. Love ya.....and, oh yeah, PLEASE SIGN IN and leave a comment once in awhile so I know who's coming to say HI.

I sound like a Broken Record......

2008-11-09T19:09:00.004-05:00

I feel so neglectful lately and I really really miss writing in my blog, so no excuses, I'm just going to prioritize things and make it go back up to the top. The intentions were there, yet I didn't follow through and I'm kinda mad at myself about that. I have all these things I want to talk about too and they just rumble and rumble around in my head. I do talk about them, but really haven't been doing too much of that lately either.....what a shock! I've just been really busy trying my best to get Jashlin Jewelry up and running that that's all I have been focusing on really. For 2 weeks prior to the WPB shows I was preparing and making jewelry, making beads, firing the beads and then you have to clean the holes of the beads too. Then I went to WPB for 5 days and had 3 very successful Jewelry Shows (one at Jan's office, one at the school where my niece works and one at Kate's old work) while I was there and since I've been home (came home Wed. the 5th), I've been working on custom orders, making beads, etc etc. I feel somewhat under the gun as I leave this upcoming Friday the 14th to go back to WPB as I'm leaving for a cruise on Sat the 15th!! YAY!!!! It will be my sissie's 50th Birthday tomorrow (the 10th), so instead of doing "the usual" she wanted to make this memorable, so a few months ago, the family decided to go on a cruise to the Caribbean and best of all, my Uncle Tom and Patty are joining us from Wichita so I just can't wait to go! It will be Kate and Dicky and Mom and Van and me and Tom and Patty and Terry and her husband (Dicky's sister). We'll be going to Puerto Rico, St Thomas and another St. Somewhere (can't remember right now.......LOL) Sounds like the Jimmy Buffett song! :)
I've been on cruises before but not the size of this ship. It's the Carnival Liberty, so if you get bored look it up on the internet and see what kind of ship, activities and food we'll be looking at! They say you gain 10 lbs on a cruise, so that sounds great to me! Clocking in at 99 lbs today! The food is supposed to be fabulous and it's like all you can eat lobster and yummy things like that. Count me in....I'm even getting kinda hungry right now just thinkin about it. Getting back to WPB for a minute.....while I was there I had a long overdue get together with some friends that go all the way back to Elementary School and High School. My friend Jan (do you know she is the only other Jan I've ever known my entire life?) had a jewelry party at her husband's office where I met some really nice people, saw Jan again after many years, and another friend Kathe came to see me there and I've actually known Kathe and her family since we were little bitty kids.....like 5 years old!! On that Sunday, Jan, me my friend Beth and my friend Julia met for brunch at this really cute cafe and I had a great time playing "catch up" with all of them. Everyone looked TERRIFIC too!! I feel so fortunate that Jan reached out to me when she got word from Beth that I had cancer. Jan then emailed me and that's when our re-connection began. She and I have been emailing back and forth and I truly so appreciate the effort Jan has made and that my friends made an effort to come see me while I was there. From now on, we will not lose touch and that's the way it was meant to be. I love the way the Universe works. Really wonderful things happen through the so called "bad times". It really does show you who in your life is there for you, when you least suspect it. In that same vein, I have received many emails from people who have stumbled upon this blog in some way and have made "friends" with them as they too are going through this journey or someone they love is going through it and we have joined hands in support of one another. How wonderful that this ugly ugly disease can make something so beautiful. I'm having a bit of anxiety today, as today is "pee" day.....my term for the every so often " 24 urine collection" I have to do. I collect all day today and 1st pee in the morning and then have to run it to the lab. It's something I will have to do for the rest of my life....one of the little cancer gifts......and I don't think I'll ever really get used to it as the test results will let us know if my protein levels are up and that in turn means my MM has returned. This urine test and a bone marrow biopsy are the determiners, so now it will be the wait and see game while waiting for the test results. I am now 6 months post transplant. I've posted some photos of my get together with friends. Promise.....it won't be another week or so when I come talk to you here. I have lots of things in my head.

I've been so BUSY, Ya'll!

2008-10-27T10:01:00.002-04:00

Please forgive me for not having written in a week, but life has been quite hectic and I'm lovin it! Time has had a way of flying by these days, as I've really have been busy from wake-up time till bed time and have to remind myself to eat and pee half the time!! Isn't that wonderful?? Being busy and productive, especially when it is YOUR choice of things, is to be in the best place in the world :) I have finally finished the garage and it is now my "OFFICIAL WORKSHOP". All miscellaneous crap has been either sold or given away, what I couldn't part with is organized on shelving against one wall and the rest is mine all mine!! The kids stuff, and coolers, lawn chairs, etc. and essential stuff that you just can't get rid because you know you will need it, is stacked in a little alcove I have in the garage so it's not in the way at all. If you have been here and seen what the garage did look like, you will know what a massive undertaking this was!! I should be embarrassed to tell you, that out of a 2 1/2 car garage, you had maybe a 2 ft path to walk in and get to the door entering the house, that's how stacked up with crap it was! But no more.......I laugh to myself thinking that you are reading this saying to yourself.....it's just a friggin garage....why is she so obsessed with the damn thing, writing about it and so excited about it! Well, it was just a phenomenal feat of mankind to get it organized...that's why!! I wish I would have taken a "before" photo but I will take an "after" photo so you can see how my studio looks. My kiln is arriving today by UPS, so I'll get that baby set up and start FIRING AWAY! I kept one of the 3 desks (I TOLD YOU I HAD A TON OF STUFF IN THERE), and have even organized that to hold all of my invoices, purchasing and mailing items so all are in one place and no scouring around wondering where this is or that is. On to another subject....my hair! Oh lordy lordy..I took some more photos of the "piece of art" on my head, and it really is growing, just in all different directions!! I'll post them when I get them out of my camera. Everyone should have the experience of shaving their head so you too can be mesmerized as you watch your hair grow in! I swear, if I didn't know better, I would say it is an alien being roosting on my head! Hair is growing in unimaginable ways....up, down, in circles, sideways.....you name it, it's growing in that direction, I swear. I wish my camera could get a really good close up (I won't stop trying, because it's a hoot to see) of all the swirlies and shit I got goin on! It will be really interesting to see how my hair finally ends up, both color and texture. When I was young and really till my mid 30's my hair was super curly....long ringlet type curls.....pretty now that I think about it, and so many people (strangers) would ask me where I got my hair "done" and when I would tell them it was natural they'd say "figures....I finally found hair I really like and it turns out you don't have a hairdresser to recommend". Then, when I started menopause VERY EARLY....right after I had Linz, the hormonal change started to straighten out my hair so I started to use a flattening iron, because it wasn't totally curl free, just an awkward in between thing, and the iron at least made it uniform. I also, back in the day, had enough hair for about 8 people, so very very thick and that's another thing that changed with menopause, the hair started thinning. So......I'm just so very curious about what this thing growing on top of my head is going to do, now that it gets a "DO-OVER". Now changing to my final thoughts of the day......I'm posting some overdue photos of Lindsay's graduation because I "lost" them on the computer! I knew I uploaded them, but it turns out I put them in a file within a file accidentally, because I know not what I do, and it's a file I hardly ever go in, and I came across them the other day when looking for something else. I really need help with computer stuff because I truly am computer impaired. I promise to post again tomorrow!!

Seeing the World thru "Rose Colored" Glasses..... REALLY!

2008-10-19T15:35:00.003-04:00

To take you back a little while ago, I had ordered some glasses online (prescription) and I chose the ones that have that little magnetic thingie, that can make your regular glasses into sunglasses. I really didn't want to order separate sunglasses for some unknown reason, so I chose 2 pair of regular glasses that has this teeny magnetic thing to easily make them sunglasses by just clicking them on to your regular glasses. To take you back just a wee bit further.....I was listening to this guy called Clarke Howard on the radio in my car one day because he is on an AM channel, since my car radio crapped out on the FM stations for some reason, so I am basically stuck listening to talk radio when driving around. I've heard this guys show before and he's really really smart money-wise, about where to get the most out of your money, what's a deal and what's not etc. etc. You can check out his website at www.ClarkeHoward.com, as he has great tips on money related stuff from insurance to eyeglasses!! So anyways, I'm listening to his show one day and this lady called in to thank him for mentioning a website called Zenni Optical as she had ordered glasses from them and was so very pleased and thankful because she said the glasses were great and CHEAP CHEAP CHEAP. If you wear glasses, you know how much they cost......hundreds and hundreds. I have, what I guess you could say, worn glasses since the 8th grade.....but not really.... and my money's on unless you're family or have driven with me, you've probably not seen me wear them at all. No.....it's not vanity reasons ......I just having something on my face and I HATE wearing glasses because they bother me and I only need them for far away, so I'm constantly shoving them off and on my face as needed because if I am wearing them and then look at something up close, it makes everything fuzzy, so I basically wear them to drive and watch TV from a respectable distance. Otherwise they get tossed somewhere, or shoved on the top of my head, and I'm just really rough with the poor things! So after hearing what this lady said on the radio show, I jotted down the web address to order some, because mine were getting pretty raggedy. The glasses start at like $8.00 so what did I have to lose, even if I didn't like the damn things, at least I'd be able to see with them on, and besides, who has EVER heard of prescription glasses starting at $8.00!! All this happened about 8 months ago by the way. Anyway, I got my glasses and all's well with the world, but then I lost the sunglass part of my glasses....the little clip on magnetic thingie. I called them up and re-ordered just the sunglass part over the phone. I love the glasses by the way and paid $15.00 each for 2 pair, can you believe it? Go to www.zennioptical.com to look at what they offer....a GREAT selection and you just can't beat the price. As hard as I am on my glasses, it's definitely where I will be ordering them again. So anyways, as usual I digress :) I received my little sunglass part and ordered 2 of them at the time, as I know that I WILL lose them, it's just a matter of time! I keep them both in the hard plastic glasses case they came in and they're in my purse and whenever I'm driving I'll just grab a pair of the shades when it's sunny out. Now....I've been doing this for a long time now, since I re-ordered the shade part I lost, which was right after I got home from Moffitt because I lost the sunglass part when I was in Tampa for the transplant. So that means, I started wearing these new shades around the 1st week in July. So for the last 4 months, when driving in the sun, I just arbitrarily open the case where I store them, usually while driving....and just grab the 1st ones I feel and snap them on. No big deal. So today, I had to run some errands, and the same thing happened. Wasn't too sunny when I left, but while driving, reached into my purse and snapped the shades on the glasses. It took me a little while and I started to say to myself....wow...fall must really be changing the leaves on the trees, they look so pretty and shiny. Then I say to myself, wow, there must be newer cars on the road because all I'm seeing is this rainbow like coating on everybody's windshield, I guess it's a "new thing" cars are coming out with to help with the glare. Today EVERYTHING looked just beautiful! Signs, lights, even trash bags filled with leaves at people's curbs (trash pick up tomorrow).....and then DUH.... it dawned me...this can't be right! Everything I'm seeing is so pretty and shiny and has a slight rainbow type effect. If I tilted my head a little this way things were green shiny.....this way was gold shiny.....and another way pink shiny. Finally I figured out it must be the shades I had put on, but it took me awhile to figure out that must be it, but what are the odds that the last 4 months EVERY TIME I have put my shades on I grabbed the exact same ones, the ones that were "normal". Every single time until today. Today these shades made my travels so pretty, so different, so shiny.....I truly WAS seeing the world through rose colored glasses and it was a much prettier world I gotta say! Wanna borrow them sometime? I wish everyone could see what I saw today. A prettier, less harsher world.....even gigantic black plastic lawn bags!! I'm gonna put them where I grab them every time from now on.

Another Great Report........

2008-10-15T15:57:00.002-04:00

I went to Dr. Nair today to get my prescription refills back on track. I really wasn't supposed to see him for another 2 weeks, but it seems since I came back from Moffitt, the timing of when to get refills have gotten all messed up. I think what happened was I had some of my meds refilled over in Tampa and some not so when I came back, some were refilled and some not, so that made some others due the next week, and on and on, so it seemed I was running to Walgreens one week for this med and then the next week for another and I just wanted to get back on track, so I get my prescriptions and have them ALL refilled once a month. It turned into a regular doctor appt so I filled him in on my Visit to Moffitt last week, was taken off a med I didn't want to take any more, and told him Dr. Ben took me off Acyclovir (the med I was taking to prevent getting shingles which is common for BMT people). I weighed 96.5, so gained another 1/2 pound.....woo hoo! Watch...... a year from now, I'll be complaining that I have 15 pounds to lose!! My bloodwork is what came as great news today. Remember those little ole' platelets that aren't going to be normal for a year? The "normal" is a range between 140 and 440 and last bloodwork they were 128, well TODAY there were a big fat 198! Now that my friends, IS NORMAL! It just keeps getting better and better. I dare you to find a happier person than me right now. Double Dare you. :) I've been really busy with this computer stuff too and should almost be done soon. I know I said that sometime last week, but I lied! I THOUGHT I would be done, but just got so burned out I stopped all computer activity to take a break, so now I'm starting back again. I think I'll be planning a trip to West Palm to see my sissie and family not this weekend but next, if nothing comes up to interfere. I'm really looking forward to it, as while I'm down there I will be meeting up with some long time, elementary school friends, to just play catch up with everyone.

Remission, Anyone?

2008-10-08T18:35:00.005-04:00

Mom and I left on Tuesday afternoon and headed to Tampa for the big 5 months post BMT appt with my doctor at Moffitt Cancer Center. My appt wasn't until Wednesday, but it was at 8am and with Tampa being a 2 hour drive, and me feeling so yucky in the mornings and taking forever to feel normal, we decided to drive over Tues afternoon and spend the night so we'd be there first thing in the morning. Otherwise, we would have had to get up REALLY early to get there by 8:00 am and fight the downtown going to work traffic in Orlando, which could make you commit hari-kari. I had emailed my artist friend Kala, who I met at Moffitt when Kate and I went to "Art Therapy" one day and we just connected and felt "at home" with each other, and I asked if she'd like to meet us for dinner while we were there. She invited us over to her beautiful home to see her art studio, paintings and jewelry and then we went for some great Thai food. We had a wonderful evening catching up and enjoying each other's company. When I figure out how to post links on this thing, I'll post a link to her website so you can see how talented she is! So the next morning Mom and I were at Moffitt bright and early where I first went and gave some blood and then went to the hematology clinic to see my doctor. They called me back and I answered the usual questions and had my vitals taken.......which by the way I weighed 96 lbs! Woo Hoo! It's the bagels and cream cheese kick I'm on I think! Dr. Ben came in and we talked about my labs and he said he was just thrilled at how well I'm doing in such a short time and how well I have responded to the transplant. The original "treatment plan" when I was discharged after the transplant was that I would go back to Moffitt for 3-6-9 and 12 month post BMT visits and at the year visit I would have another bone marrow biopsy. Well, Dr. Ben said that he did not need to see me ANYMORE and that he felt very comfortable leaving me in the care of Dr. Nair and if there were any issues with my health that Dr. Nair would contact him. He said Dr. Nair is a great doctor and that I was in good hands with him. Now THAT, I already knew.....but Dr. Nair and Dr. Ben know each other as Dr. Nair worked at Moffitt for 5 years in the Bone Marrow Program, and when I became his patient, he referred me specifically to Dr. Ben for my transplant as he is considered one of the best MM doctors in the country. Again, divine intervention. The doctor I just happened to choose out of all the oncologists in my insurance book just happens to be a specialist in Multiple Myeloma and had worked in one of the most prestigious cancer hospitals under one of the most prestigious doctors that specializes in my type of cancer! So, my friends, I guess I got "fired"! I told him that and he laughed and he said the less I have to see him the better, which is oh so true. So........no more trekking over to Tampa anymore. AWESOME! And only once a month to Dr. Nair...gee what am I going to do with all this free time now, after being scheduled once a week (or more) for over a year and half? LIVE LIFE! After my visit with Dr. Ben, Mom and I snuck up to the BMT clinic to see the nurses that had taken such wonderful care of me. We just wanted to say hi and show them what the results of all their hard work looked like! I was sooooooo happy to see them and they were soooooooo thrilled to see me. It felt really really good. The positive energy was tremendous! They all hugged me and told me how great I looked and they said I "made their day" coming in to visit. I know when my "old" patients would come back to see me it felt so good to know that they were doing great so I guess seeing me doing so well was gratifying for them. All in all, we had a WONDERFUL trip to Tampa, and at this time I have been declared officially cancer free and in remission. I've posted some photos to me with Kala and Dr. Ben. I am so friggin happy right now :)

I am SOOOOO ready for HALLOWEEN......No Costume Needed

2008-10-04T12:43:00.002-04:00

I am sooooooo sorry to do this to you, but so many people have asked me how the "hair" situation is. Or more accurately.....the "lack of hair" situation is! I deserve the National Medal of Honor for Bravery during Battle (the Cancer Battle), for even allowing you into this most secret (well not really secret if you see me on a daily basis) part of my life. I am posting the photos I took the other day of my "hairy situation". How horrid this is, but I have no fear. :) Good thing I don't embarrass easily......as a matter of fact.....who gives a shit how my hair looks? Don't raise your hands, please. I suppose in this hair growing back phase of my life, I will have many many awkward "phases" of hair re-growth and I will shamelessly share them all with you my friends. It wouldn't be fair, would it, if I only shared parts of my journey? Oh, hell NO. With me you get all the down and dirty details LOL.....aren't YOU lucky? At this point though, when I look in the mirror, I want my shiny bald head back, as I think my head looked much better totally bald than with this stubble I've got going on now. So anyway, I present you with the new and unimproved Jan. Let's see, these photos reflect that I am 142 days post the chemo that makes your hair fall out. I received the chemo on May 12th and 13th, and the hair started it's falling out process about 10 days after that. Gee my hair grows fast (wink wink)

About Yesterday......

2008-10-02T12:20:00.002-04:00

Remember I told you I ran a bunch of errands yesterday? Well this has been in my brain since then, but I needed to think about it more and process my thoughts about it more, before I could write about it today. When I was standing in line to check out at Target, there were 2 women in front of me. Their ages are meaningless, as the story could apply to any age or sex actually. But before I tell my "Target story" though......just a wee bit of background on why I'm thinking and feeling this way. I think that before cancer (BC...how appropriate!!) we have a tendency to go through life on a kind of "auto-pilot" and have conditioned ourselves to think and respond to situations in the same old ways. I think at times anyway, we tend to exaggerate the stupid petty things in life and let them get under our skin, like a spill on the carpet, traffic on the roads, an irritating co-worker....whatever.....you know what I mean, life's little annoyances that we make ourselves crazy about. We tend , at times, to let them get the best of us and disturb our world, disturb our peace in the world, when really, c'mon.....they are just too petty to even dignify by letting them interfere in our world. Now that I have cancer and consider myself a cancer survivor, I want to think that I am beyond this stage of "conditioned responses". I feel I have been given the gift of seeing the bigger picture (on most days....hey I'm human!), I rarely even give a second thought to, what in the past I would have possibly let interfere in my life. I gave the person or incident power over me to change my mood (never to the positive LOL).....and steal from me the precious present. I can remember coming home or talking to friends and repeating whatever it was that pissed me off or irritated the crap out of me, which gave it double the power since it was still in my conscious brain! OK......now we're back at Target and I think now "after cancer" has made me a bit more observant about myself and others. As I was saying these 2 ladies were in line in front of me and there were only 3 registers open. I was the 4th person in this line. I will admit I think we did have a particularly slow check out gal, but oh well, that's the line I chose to stand in and Murphy's Law dictates it will always be the slowest!! These ladies in front of me started to get a little agitated and complaining (a bit loudly), which I will admit that I myself have been guilty of in the past. I was standing there listening to them, and I'm thinking to myself, dang.....I'll stand in line all day and be glad I'm alive to do it!! Having been through so much in the last 1-1/2 years, being so sick, more than I thought a person could ever be and still live, being given a diagnosis that surely meant a death sentence in the not so distant past, well hell...........I'm still here......I'm alive.....and I'm feeling pretty damn good right now. Cancer makes you realize that all you have is RIGHT NOW. You don't have an hour from now, or a day, or a week or a year from now. No guarantees people. So....back to Target (sorry I digress, as usual).....I felt like tapping them politely on the shoulder, telling them my story and then asking them if they possibly knew how many people would gladly trade places with them because it is a priceless gift to be alive and standing in line today. My motto these days is asking myself....."does THIS really matter?" "will it matter tomorrow or next week or next month?"....the answer is always a big fat NO. And oh yeah....one more thing......the gift of being thankful.

WOW...October already?

2008-10-01T16:56:00.002-04:00

I can't believe that it's already October! These are the times of year I wish I lived "up north" so you would actually know there is a changing of the seasons. Living in Florida for basically your whole life, makes you miss out on some of the most beautiful times of year, with the colors changing on the trees. A little further north in Florida you can catch a bit of the seasonal change and then I have even more of a seasonal change than my sister does in So. FL. The great thing about this time of year for us is that we are nearing the end of the hellacious hurricane season, so we can breathe easier..... at least for one more year. I ran a bunch of errands today after a really nice conversation on the internet with my friend Susz who I met through an online support group. She has been in remission for over a year now, so I tell her she is my role model! I didn't even know you could do kinda an IM thing through our support, but she did, so it was nice having a "real time" conversation with her. She lives in Canada.....isn't the internet the BEST invention ever?? After I showered I ran to Walgreens for my prescription, then Walmart, then Target, then the bagel store (yum), and then CVS. In and out and in and out of the car, wears my skinny little butt out! It was all for stupid little things like Coke on sale etc, and I kinda wanted to get away from the computer for a while, as it seems that all I'm doing lately is typing, uploading, downloading etc etc, so I needed to get out of the house so I wouldn't do it for hours again today! I took some pictures of my beautiful hair growth, so I'll upload them tonite and post again tomorrow, to show you how luscious my hair is. :)

Still Pluggin' Along.....

2008-09-30T15:36:00.002-04:00

I'm still working on listing this website stuff, but should be totally done (hopefully) by the end of the week. I want to get back to making my beads and then making jewelry with them.....I miss the creative aspect. I don't consider fiddling on the computer creative, although I suppose it would be, if I was creating actual websites for people (or me) and knew HTML. What a mysterious world that is to me. One day I would love to take a class and become more knowledgeable about the the ways of the computer world. You might as well be speaking to me in a foreign language! To me, I open the program..sign on...read my email.....go to a few websites.....read a few articles.....and that's it for me! I know my computer can do a zillion more things I am totally clueless about and I'm envious of those who DO have that kind of knowledge. I won't take the class though until the chemo brain fog subsides, as I'll learn something and then forget it the following day......if not sooner! I know my limitations! So I'm just farting around getting my things listed to sell and when I'm done I'll be posting the website address, so you can hopefully send it to all on your email list, who will then send to their email list etc etc, as word of mouth is the best advertising of all. I have an appt at Moffitt next week for my 4 month post BMT check up, but because of my "sneak peek" of the labs from the postponed appt I'm not expecting any surprises. I am excited about going though for a couple reasons.......Mom and I are going up the day before the appt because I have to be there at 8:00 am and to do that from here we'd practically have to get up in the middle of the night and leave, so going up the day before and staying in a hotel so it'll be less stressful. But I'm excited because Mom and I are meeting up with my friend Kala who I met at Moffitt when Kate and I went to "Art Therapy" during my BMT. She is a Volunteer at the Moffitt Cancer Center and an artist who does beautiful work and she has also branched out into making jewelry too!! We are going to meet at her studio and then go for some Thai Food. I'm also looking forward to seeing all the doctors and nurses who were involved in my BMT journey, as I developed a relationship with them and want to give them a big hug and tell show them what a great job they did (ME!). Don't forget to scroll to the bottom of the page and sign up as a "follower" please. Thanks!

Cancer.......The Gift of Clarity

2008-09-29T10:56:00.002-04:00

We are all a work in perpetual progress, hopefully becoming a bigger and better person every day. To wake up EVERY morning and set goals and be determined to make this a better day than yesterday is the goal. To make YOU a better you than you were the day before is the goal. When you are diagnosed with cancer, one of the many gifts you receive from it, if you are OPEN & CHOOSE to receive it, is the gift of clarity in seeing the big picture. Now don't get me wrong, I'm as guilty as the next person of losing that focus from time to time, we're only human after all, but the ability to keep clarity in the forefront of every day is a true blessing. Since I have been diagnosed and gone through the torturous bone marrow transplant and lived to tell the tale, it has made me so aware of living each and every moment as best I can and being the best person I can possibly be. I'm talking about the inside stuff. Only you know what your core is feeling. You can pretend to be happy or nice or whatever and delude yourself into thinking that's the way you are, but only your soul knows exactly what your true intentions are. This is what you putting out into the Universe, not the playacting stuff. Cancer has given me the ability to really know myself and my core and my intentions on a soul level and that in turn guides me to be a better person each day. Am I making any sense to you? I hope so. You know how the ole saying goes "why re-invent the wheel" ? I say this because I don't want YOU to learn this lesson the hard way......accept it as my gift to you. Do some meditation, get quiet within, and have a nice long conversation with yourself. Ask questions and LISTEN for the answers as you do have all of the answers, we usually just don't get quiet enough within to hear. Ask for guidance and strength to follow through. So getting back to my "cancer" gift of clarity, I just wanted to share that although cancer SUCKS big time, if you open yourself up to the lesson, there always is one.

Told ya.......I'm BAAAAAAAAAAAAAACK

2008-09-27T13:32:00.002-04:00

Yay......posting 2 days in a row! Whoa......that hasn't happened in a while. I'm taking a break from "computer work" (well that's not really true is it?..... as I'm writing on it now)........but this isn't work, talking to you. I was referring to fiddling around on these websites I am putting together which between chemo brain and just plain being moronic when it comes to computers, it presents quite a challenge most times. So.... as I was saying, I'm taking a break to eat a peanut butter sandwich. I am currently addicted to Peter Pan honey roasted peanut butter on toast or a bagel, as my mid morning and mid afternoon snack (hey it could be worse, it has protein and is fattening) AND of course, I'm watching my UF GATORS play Ole Miss right now. Go Gators. Just a side thought....I LOVE Football!! Many women I think, may not care for it that much, but I guess I grew up in a football watching family (Mom & Dad) so that I learned to love the sport too. My mom, right now, can tell you who plays where, how they're doing etc etc!! It used to be just Sunday and the Pros but since Linz went off to college, I've added College Football so NOW it's Saturdays & Sundays. Oh what a busy schedule I have (wink wink). It's kinda nice to not have a deadline in my life right now, seeing as the last 6 weeks were dictated by a "schedule" of events, so I am enjoying this down time of picking and choosing what I want to do and when I want to do it. I thank the Universe everyday for providing me with that opportunity. I need to take some time and catch up on long overdue emails to Tam (my wonderful cousin in Wichita), to Sam (to thank her for my birthday card), to Wendy, to Colleen, to Kathy (my sis in law) and Kala (my artist friend who was brought into my life at Moffitt), so I'm thinking after the game I'm gonna do just that. Again, another thing I am grateful for is having these amazing people and MORE in my life and I need to nurture these relationships. I really didn't have a topic per se, for this entry, but the above just gave me food for thought, and believe me, I have alot of things I want to talk to you about. But back to relationships.......why else are we here? On the big Life Scoreboard do we measure a successful life by how many things we own, or what we can afford to buy, or where we've gone on vacation? and on and on and on? Nope, I don't think so. I think we will be asked....."how well do you think you did in the relationship dept"? Did you tell your family and friends that you love them? Often? Did you do all you could to let that person know they are special to you? That you are glad they are in your life? Those are just a few of the many questions, I feel we will be asked when meeting face to face with the Creator of the Universe, and I want to be able to answer them in the way I would like to be able to answer them. I think it is true that ALL people come into your life for a reason (yep......even the cranky person in line in front of you at the grocery store), some people come into our life for the whole duration, and some are meant to share our lives just for portions of our journey. Some even come in, go out, and then come back in......all serving a higher purpose. It is up to us to nurture these relationships if they are important to us. So I will take the time RIGHT NOW to tell you ALL that I am so thankful you are in my life, whether you are family, friend or just stumbled upon my blog and left an anonymous comment, I appreciate you. Having you in my life feels good. Again, because it is a new feature on my blog, please scroll down and sign up as a follower if you are reading this, as it helps me to realize I'm just not talking to myself!! LOL......I hear they can "lock you up for that" (hee hee)

WHEW......Finally Catching my Breath...

2008-09-26T10:44:00.003-04:00

Sorry it's been a week guys, but that's what happens when you run out of gas! I have been metaphorically stuck on the side of the road, just sitting there, waiting for the gas tank to magically fill up and it happened today. So yay...back to active life again :) The crash was just a culmination of 6 weeks of craziness between cleaning out the garage, Lindsay coming home for a week and helping with her move, the garage sale, making jewelry for the show, and then the show itself. I came home Sunday late afternoon and just crashed. I tend to forget I am only 3 months post BMT (which is a good thing really) but then again, I really do need to take it somewhat slower than I have been these last few weeks, and I intend to do just that. I have soooo many things I want to write about, that it's hard to know where to start, so I'll just give you the show thoughts right now, but many more are brewing in my head. Some cancer stuff and some not. The show was a success in many ways and I'm glad I did it. Again, I couldn't have done it without Kate and Mom for sure, and Greg, my brother pitched in and transported the tables and tent for me which was a big help. Putting together the show was alot of work, both physical and mental, but I enjoyed it and didn't get all stressy or anything.....it was just a constant. I must have been running on adrenaline (or fumes) those last few days though as when I crashed I really did crash.......I mean I had NOTHING left in the ole tank!! I met lots of really really nice people at the show, sold some stuff, and started a customer list for emails......so I met my goals for the show. I wore a scarf on my head and my australian cowboy hat, but that doesn't really hide the fact I'm bald, which turned out to be a real conversation starter!! LOL........ when we did tell my story briefly, I got so many hugs and best wishes, it was great. So I basically received validation on all levels this weekend.....that people loved my jewelry, bought my jewelry, took my cards to go to the websites, about 6 people wanted to have a home jewelry party and I received compliments on how well I looked and am doing post BMT. I couldn't have asked for better results. I've posted a few show photos and when I am through listing items on my website I'll post a link here so you can take a peek. Thanks for hangin in there with me and I'll post again tomorrow. I've added a few new features to my blog if you scroll down to the very bottom of the page you'll see them. You can "subscribe" (PLEASE DO IF YOU READ MY BLOG) to it and will be notified when I make a new entry (I think that's how it works!) and there are a few other options down there, that I have yet to figure out!! I wish I was a "techie" :)

Down to the Wire....

2008-09-19T09:12:00.002-04:00

Well it's basically "D-DAY" for me and the art show countdown has begun! Thought I'd take a few minutes to check in as I know I won''t be writing for the next few days as I'll be busy with the weekend craft show and probably crash and burn when I get home both days, so no computer time will be on my agenda until Monday. It is from 10-4 both SAT and SUN, so Monday I will be a blob of humanity I'm sure. It's a crappy thing, but when I am "out of my routine" it really kicks my ass. I'll be getting up early on both days to have the time in the morning to move.....my first 2 hours awake are horrid as I am so stiff and achy and until I get a heating pad on my back and neck and the meds kick in, I can barely hold a conversation or move! What a fun person I am in the mornings! So I have to give myself those extra 2 hours in the morning to resemble a somewhat normal person before beginning my day. Being the perfectionist I am, I look around at what I have to display for the show, and I'm like....I need to make another watch......or bracelet or a whatever.......so there comes a time, when ready or not.....I just gotta stop and today's the day. I have too many other things on my gotta get done today list , like going for groceries to make sandwiches and get snacks for the 2 show days, get the cooler from the depths of the garage and clean it out.....if I wrote here what is on my "to-do" list for today I would run out of internet room! I'm excited that Kate, my sissie, is coming up to help me with the show and of course, Mom will be there and Ashley will help to set up for the show with us. I have to pick up some rental tables, make some signs.....oops.....starting to list my massive list so I'll STOP NOW!! LOL.....I crack myself up with so much on my plate, but ya know what? It's all good. I don't have any cancer cells right now (do the cabbage patch), so I feel invincible at the present time. I can do anything I want. Yeah for me!! Well this is a quick one I know, but "duty's calling" and I'm almost ready to move for the day so time's a wastin! My main objective for doing this weekend festival is not so much to sell stuff although that would be awesome, it's more to generate a mailing list for my websites as that's where I plan to do the majority of my business..... on the internet. I do plan on approaching boutiques and spas and other places about carrying my line at some point, but that's down the road in my business plan. For now, I just want to get out there and pass out my business cards with my websites name and address and start to make a customer base per se, to direct traffic there. I'd like to schedule doing shows every few months and also get people to sign up for hosting Home Jewelry Parties. So selling my things at the show would be icing on the cake, but with the economy the way it is right now, I'm not expecting big sales at all. Perhaps doing a show or two around the Holiday.....Nov and Dec.....would generate more sales. When I have my websites up and running with lots of items listed, I'll post a link here from my blog. Wish me Luck!
Peace & Love

Line up for HIGH FIVES People........

2008-09-18T08:13:00.003-04:00

Now, in my feeble little chemotherapy ridden brain, (no more comments here please hee hee) all of my friends, family and those new people in my life who wandered have into my blog and have commented (you're in the friend category now) are all lined up in a row......sort of like the wedding party at the reception, when you are greeting your guests.

Now back to that scenario in a minute.....but first....a backstory

For a month or so now, I have already had on the calendar, a Moffitt Cancer Center 3 month post BMT checkup for Wednesday 9/17 (yesterday). About 10 days ago I had to go to an independent lab and have 5 vials of blood drawn for every test under the sun and to drop off a 24 hour urine collection (always a fun thing to collect). The lab was to fax the results to my Doctor at Moffitt. Well, being the absolutely crazy woman I am, I was just too dang busy with this upcoming weekend "craft festival" I have a booth in, to spend practically a day and a half going to Tampa and back, and I need the time to get ready for this show, which by the way is a whole lot of work!! So on Monday I called Moffitt, and said I needed to re-schedule due to auto problems (true story, my Jeep is in the shop.....although a partial fib, because Mom was gonna drive anyway). I was speaking to the nurse of Dr. Ben, my doctor at Moffitt, about all this. Anyway she tells me that Dr. Ben is only at Moffitt one day a week and his next opening wouldn't be until Oct.8th, and then my blood and urine results would be inaccurate having been taken nearly a month before, so I would have to have them re-done. So my request to re-schedule, is just a pain in the ass for them I'm sure! So she says, let me contact Lab Corp and have them fax me your results and if you are ok we will re-schedule for Oct.8th BUT if I see something.....ANYTHING, I don't like, I will just overbook/doublebook you for the following Wed. but expect to do a bit of waiting since I would be squeezing you in. I told her that worked out fine for me and to call and let me know what's up and when to put it on my calendar, after she got my lab fax. Within a half hour, the nurse called me back and we verbally went over my results and I had her also fax me a copy (I have a copy of ALL my labs, tests etc. since Day #1).

SO now back to my feeble little chemotherapy ridden mind

You are all lined up in that wedding reception type line because I am going down the line
GIVING HIGH FIVES TO ALL

My blood is PERFECT right now!
Liver and other organs just SUPER!
NOT a CANCER CELL to be found in either blood or urine!
A MIRACLE is happening!

Even though I have been so busy getting this show stuff together, I would stop during the day and do the "cabbage patch" and sing..... "I'm doin good" and "I don't have any cancer cells" (you must do these in a sing- songy way) and then the most important of all...."Thanks God, for these awesome results" (not sing-songy)

So needless to say I don't have a Moffitt appt until October 8th.. YIPPEE!!

Thank you ALL for sending so much love and support my way because if I was in this alone, I know the results would be different. I truly believe that having you all saying prayers & sending your positive thoughts and wishes, plays a huge role in all of this as it makes my outlook positive, increasing my endorphins, and creating a positive and healing atmosphere in my feeble little chemotherapy ridden brain! (kinda catchy little phrase huh?)

If you notice the time stamp on this entry it's EARLY for me to be writing (started around 8:15 am) because I have a really full day ahead of me and if I didn't do it now, the day would slip away and another day without an entry would go by, and I don't like that much. I feel like I am getting to "talk" to you when I write here. I feel guilty I haven't written more lately, but it's due to the show, and I'll get back to my daily or every other day ramblings after this coming weekend.

So THANK YOU for everything
I am a really happy person right now

Love and Peace to all

The Cancer Movie

2008-09-12T18:30:00.001-04:00

Hi Everyone
Just wanted to share this little clip with you. It pretty much sums up the whole "cancer thing" for me.
http://www.thesurvivormovie.com/

Be back soon............gotta upload jewelry photos I took today FINALLY!

Update on Blood Counts.....

2008-09-10T21:10:00.004-04:00

Today I had an appointment to have my twice a month blood work done at Dr. Nair's office. As I've said before I have now "graduated" to only seeing him once a month and having blood draws every other week. Quite the change in the ole routine having been to the office once a week for well over a year and actually seeing the doctor every other week. I'm a big girl now!! :) Actually I did gain a pound at the "official weigh-in" today so I'm up to a strapping 94 lbs. now. I was hanging at 96 for a month or so and then got down to 93 (please don't tell my mom....wink wink) so at least it's back on the way up. I think I'm going to add the dreaded Ensure or Boost although the thought of it makes me cringe after drinking it during the transplant phase of all this. Looking at the bottle kinda gives me the heebie-jeebies, but I really need to put on some weight. It's one thing to be thin and healthy looking, but I am not. I look like a cancer patient. LOL...I crack myself up. What a weird sense of humor I have. I had to laugh today at the doctors office too. I just must be in one of those moods today. Every time I go it is the same routine. I get called in......go back to their little "cubbies" where they ask me questions, take my temp and blood pressure, draw blood and then we wait for the results. So today when the gal was asking her questions that I have heard for how many visits now......(let's see every week for the last year and a half equals how many visits.....ah shit....you do the math). Anyway, the questions are how is your appetite? Are you sleeping? Do you have constipation or diarrhea? Do you have mouth sores? Tons of questions to which I answer fair or no. But it made me think..........sheesh..........I tell people about my bowel/bladder regime on a weekly basis!! Now how many of you have THAT come up in conversation weekly? Anyway, today it just tickled me. My labs were good today even though I have been back on the Acyclovir once a day. It brought my platelet level crashing at one point and he stopped it for 2 weeks. I did take it 2x a day but now only take it once. My WBC are 5.0 (normal 4.1)...........RBC are 3.62 (normal 4.20) so they are a little low which makes me anemic and tired (what else is new?) and the platelets came up ONE point to 128 with being on acyclovir for 2 weeks. Those are the babies that are last to grow and told me it could take up to a year to be in the normal range which is 140. So that's that my friends! Peace

Something I Wanted to Share.....

2008-09-09T19:21:00.003-04:00

Hi All
I'm too tired right now to articulate my thoughts and share them (some of them, like Lindsay leaving for Las Vegas today, I'm not even ready to touch>>>BOO HOO>>>)..... but I came across this today and loved it, so I wanted to share it with you.

A Mirror is only as good as the reflection in it
An appreciative heart attracts more of what it appreciates
Adversity does not build character, but reveals it
Worry just enough to be prepared
Melt the icy fingers of fear with the sunshine of hope
A good way to forget your troubles is to help another with theirs
The sweetest grapes are picked from the vineyard of friendship
Being in a good frame of mind helps your immune system
People don't care what you think until they know how much you care
Don't be so busy adding up your problems that you forget to count your blessings
We cannot direct the wind but we can adjust the sails
The seemingly impossible large issue can always be broken down into smaller possibilities
Yesterday is history, tomorrow is a mystery and today is a gift.....
that's why it is called The Present

Garage Sale Day #2

2008-09-06T17:46:00.002-04:00

And I thought I was tired last night!! HA Today we got up at 6:00 am and started the garage sale routine and thank the stars it's finally over. Please oh please, if I EVER say I'm going to have a garage sale again, take me back behind the shed and shoot me. I haven't had one in soooooo long that I had forgotten how much work is involved in running one. I had all the help in the world today and we were very busy so we made some money from our unwanted items, so that's good. It's the picking up afterward.....boxing up what you just took OUT of boxes to give to the American Cancer Society's thrift shop. The aftermath is the killer! If I could just go in the house after it was over and then it all disappeared, well, that would have been great. But no........it was all there, just staring me down, so we tried to make quick work of the clean up. Ash, Linz, Anthony and especially Kevin were VERY helpful, moving the bigger items, going to the trash dump and Kevin even trimmed my driveway of branches today, which was a gigantic help to me because I just don't have the strength or stamina right now to do the things I used to. I'm working on it, just don't have it right now. I have 2 weekends till my ALL DAY craft show, and it will probably take every second of those 2 weeks to get ready for that. I think I am a crazy person!! Taking all this on at one time.........sheesh. And in the middle of those 2 weeks I have to drive to Tampa and go to Moffitt for my 3 month check-up. Fingers crossed and say a prayer that all is well and on course. My sissie and friend Steph will be coming up to help me with the show along with my mom, so that will be a huge help. Again, something I couldn't do without them! It still rates underneath the bone marrow transplant help though!! LOL. I am so dang tired I'm surprised I can type legibly (thanks spellcheck) and I plan on doing NOTHING but watching the GATORS slaughter MIAMI tonite in football. Everybody do the Gator Chomp now....good job. Peace Out!

Garage Sale day #1

2008-09-05T21:30:00.002-04:00

Whew.........I'm pooped! Set the alarm for 5:00 am this morning as you know how much work a garage sale is if you've ever had one and I am in such bad shape in the mornings it takes forever for me to be able to move around decently. Thank the heavens for heating pads is all I'm saying. :) It's especially hard to have one when you have a zillion items to put out and display. I wanted to put an ad in our local Pennysaver paper, which is a popular thing to do around here for a garage sale, and their deadline is Mondays at 5:00 pm. Well....last Monday was a holiday so I didn't get it in in time for the Wednesday and Saturday editions because the deadline was the previous Friday because of the holiday. So we decided to keep it a 2 day affair anyway and put up signs in strategic corners for today and knowing the Saturday edition of the Pennysaver will be out around 6:00 am tomorrow which will carry our ad. So the customers today came from street signs only, so we're expecting a larger crowd tomorrow. I think I sold a bit over $150 today so that's not too bad considering it RAINED for half of the allotted time! So I just set the alarm for 6:00 to get an extra hour of sleep since most of the stuff is still in the driveway covered up (our house is set way back on a lake so you can't see it from the road) and only some things will need to be put out, unlike today. Mom came over to help in the morning so there was 4 of us to pull it together......not too bad really. We even closed shop around 1 because it rained hard starting around then and we were tired of the tarps on....tarps off.....tarps on.....tarps off dance we had done throughout the day. Kevin came up tonite for the weekend too since Linz will be leaving for Vegas on Monday (still in denial here) so he'll help with all the heavy/man stuff tomorrow. My 94 pounds and stamina just don't cut it these days! Will catch you up on the final sales tally probably Sunday or Monday when things get back to the regular routine and the dust settles! Later (Florida) Gators

Now it's.....Happy Birthday to Lindsay!.....

2008-09-02T14:46:00.002-04:00

Hey All........Today 9/2 is Lindsay's 25th Birthday! Hard to believe I gave birth to her so many years ago. I look at the woman she has become and am so proud to be her Mom. She is and always will be my "baby"! We are 5 days and 29 years apart, so that makes her a Virgo like me and supposedly Virgos aren't supposed to get along with each other as we tend to be know it alls (who me?) and we are perfectionistic folks who always tend to think we know the best way to do things (who me?) hee hee BUT it turns out that some of the people in my life I have become closest to have all been Virgos!! So go figure. I do believe in astrology type things but that one doesn't hold any water in my book! It's been a really busy week starting with the garage ordeal of cleaning it up and making room for her "chit" to go in there. My house looks like a war zone because we figured the things she was actually packing and taking to Vegas would be lined up on one side of the dining room table and the "I'm not sure I have to go through it" is on the OTHER side of the dining room table so therefore, thankfully I have a pretty large table in the breakfast nook so we at least can sit there and eat or at the bar at the kitchen because every other place is packed with boxes and "stuff". She's only here a week before moving to Vegas so she's on a time frame to get a bunch of her own stuff done......see some friends she won't be seeing for awhile......and going through a MASSIVE amount of who knows what in piles. Sheesh.....it's wearing me out just thinking about it! On top of everything else going on I've committed myself to show my jewelry at a local but rather big "Fall Festival of the Arts" the 2nd week in September......I have a Moffitt Cancer appt. a few days before the festival.........I need to start 2 websites where I plan on selling my jewelry BEFORE the show so I can have the website name on my business cards at the show.....and I can't begin to tell you the endless list of misc crap that is also on my "to-do" list. So.......for a recovering cancer patient I'm not heeding the advice of "take it easy" very well these days!! I like being busy though, but want to PICK what I want to be busy with.......LOL......and some of these tasks are not my choice! Making beads and jewelry is fun for me......I can feel the endorphins for happiness helping to repair my body, so that's a good thing. It's like........oh, I have cancer?..that's right, I do! LOL I'm too busy right now to give it a 2nd thought so it's being put in it's place in a dark corner and being ignored for now, which is exaclty where it needs to be! Before I go, I want to mention that I have received comments on my blog from those who have just "happened" upon it. I want to thank you for joining me on my journey and welcome you to my "family". Although we have never met, I appreciate your replies and comments and it makes my day when I receive a notice that someone has commented. Your comments do not show me your email address though, so I can't respond back, so if you'd like email me at jrgaf@aol.com and I will be glad to email back and forth with you. If you have any questions re: treatment, the BMT or meds....anything I can help you with, please write and I'll be more than happy to help. If I can give back in any way, it's the very least I can do. Peace to all

Happy Birthday to Me.......

2008-08-28T16:13:00.004-04:00

Hi Everyone
Well today, August 28th, is my Birthday! Up until now....I'd say from hitting 30, birthdays became more of a nuisance than anything else. In my 20's it was "Whoa.....let's go PARTY".....in my 30's it was "Let's invite the family and some friends over for a BBQ".............in my 40's it was "AHHHH....no big deal, let's just go grab a bite to eat (if that) LOL........and the 50's well it was "Let's start counting backwards!" However, in light of recent events I believe it's come full circle and back to the 20's mentality of "Let's PARTY". I have EVERY reason in the world to begin actually CELEBRATING my Birthdays now. I never thought I'd give Birthdays another thought really. C'mon....it just means we're getting older and more wrinkly and lots of other fun stuff, but NOW I am more than happy to rejoice in and celebrate the fact that I have lived for a whole additional year. Please embrace my philosophy friends. You are here. You have a life and no matter what shitty thing may be going on in it right this minute, well, nothing lasts forever and this too shall pass. Live each day to its fullest. Stop and smell the flowers. Look for the positive and lessons in all things. See what birthdays do for me now? LOL Another milestone in my life worth giving a second glance at. On top of this, I had a Doctor Nair appt yesterday and my numbers have never looked better! Yay for my blood! (I'd pat in on the back, but it keeps moving). My beautiful white blood cells are WAY in the normal range. My red blood cells are just a titch under normal and those sweet little platelets of mine went from 114 last week to 128 this week. I had to have my once a month IV session yesterday but it seemed to go rather quickly and I didn't even get to read the whole paper before I was done. Dr. Nair said I have "graduated" to only seeing him once a month now, but will go in every other week for bloodwork. Kinda crazy when I think that pretty much every second of every day has been basically accounted for for at least the last year and a half of my life and now the reins have loosened. Kinda scary and kinda not. I'll write a whole new blog one of these days about how I feel about that. So today I got an email Birthday from my wonderful friend Colleen, who I can't believe she remembered my birthday after all these years, I got another email from my sis-in-law Kathy and my sissie Kate has sent me 5....count em.....5.....birthday cards!! I haven't talked to her yet today, but know she'll call later on. Got a call from my brother Greg to wish me a Happy Birthday and also a call from my step dad Van. And of course Ashley told me first thing this morning and Linz called from Gainesville. Linz, Anthony and Kevin will be here at some point tomorrow from moving her butt from the apt in G'ville to here, so we plan on going out to my favorite restaurant tomorrow night. In the meantime I've been really busy cleaning up my garage to make room for her stuff to be here, as we are going to have a massive garage sale the 1st weekend in Sept to get rid of it all. The garage was a royal mess as I see it as a GIANT purse and just throw stuff in it for years so you can imagine the mess it was and how disorganized! Whateve doesn't sell will be donated to the American Cancer Society's local thrift shop here. It's all good stuff, just not what we want and I really do want my garage back so I can set up a studio for making beads and jewelry out there, as the bedroom is getting a bit crowded with all my supplies! I promise to take some photos soon and post them. Peace to all

It was time for a Reality Check..... I guess......

2008-08-26T21:15:00.002-04:00

My usual routine in the morning, is to start the coffee and go down and get the newspaper. Now, up until about a few weeks ago, I would literally read the paper, front to back. Really. Lately though I've just been "perusing" the paper ( I love when I get to use big people words).....hee hee, because I've been eager to get a jump on making beads and jewelry. But today was different, and I don't know why. I wanted to read the whole paper. Front to back. So I got my cup of java and settled in. Now we come to the part of my Reality Check......I suppose. You know how the Universe works..... sometimes it sends slap you in the face messages you can't ignore. Other times, it just sends oh- so -subtle hints and it's up to you whether to pursue them or not. So this morning I'm reading the paper and in the local section as I'm turning the pages a photo caught my eye and it was in the Obituary section. Now, I know I said I read the paper front to back but the Obits are not part of my regular reading habits! But here on this page I see a photo of a woman, youngish.....(and that gets determined the older I get!)..........and when you see a photo of someone say ,under 60, it does tend to catch your eye. So I read her obituary and it said, and I quote, "she lost her war with a rare blood cancer called Multiple Myeloma". I started to cry. And cry. Here was this beautiful woman with 2 younger kids, she was 44 yo, and she had been battling MM for 2 years and lost the war. Wow. I usually never really think about my cancer. I know that sounds kinds weird, but I really don't. Sure....I have to go to the doctor's 1x a week right now, so that's always a big fat reminder of course, but it's been 10 weeks since my Bone Marrow Transplant and it's kinda like having a baby. You forget how horrid and painful it was as time goes by. It's almost like it was a really bad dream at this point (although I have photos and video that tells me otherwise). So, I guess my roundabout point to all this rambling, is that seeing the obituary of a beautiful young woman who died from the same disease I have, made me do some re-assessing. Is the Universe telling me to stop doing something that would make me healthier and give me more tools to fight MM? Or is there something more I could be doing to gather more tools? Or was it just a heads up to remember that I am living with this disease and be grateful and thankful I am still here. I'm hoping it's the latter and although extremely grateful I survived the BMT (people do die from them), perhaps I need to further pursue my gratefulness. One thing I have decided is that when this jewelry/beadmaking business gets in the black, I will be donating a portion of the proceeds to either the International Myeloma Foundation or the Bone Marrow Transplant Unit of the Moffitt Cancer Center. Ultimately I would love to start a foundation of sorts that helps people monetarily cover expenses that come with a transplant. This I thought of a while ago when Dawn, one of my nurses at Dr. Nair's office, told me about a patient that could not have a BMT because he had no one that could stay with him for the required month when you do it outpatient. He had family, but when people live paycheck to paycheck, or have little kids or whatever the reason may be, no one can afford to take off a month of work and still make their bills. See how lucky and fortunate I am?? I had 2 people who were with me 24/7......Mom and Kate. See what I mean when I say I could NEVER have done this without them? So that makes me think, this poor guy can't be the only person out there who can't have a transplant he needs to give him a shot of living just because there is no one to care for him? Who said life's fair, huh? Insurance doesn't cover stuff like this so having a foundation that would hire someone specifically to stay with someone like him or pay the family's lost wages when they are taking care of the sick person is how I would want monies to help. There is SO MUCH money needed when you have a life threatening illness, you have no idea unless you've been there. My personal bank account just disappeared right before my eyes in the last 1 1/2 years, so I know what it's like. I'll stop here as I know I'm on a tear right now.....that obit shook me up. Not too many people have this disease.....why of all days was today I decided to read the whole paper when I haven't in at least the last few weeks?........and the 44 yo woman DIED. I got some more thinkin' to do, and I am grateful I'm here to do it. Peace

Fay Fay Go Away.....

2008-08-21T15:50:00.003-04:00

Howdy folks........wow is the rain coming down here or what? Tropical Storm Fay has overstayed her welcome here and it actually wasn't so bad yesterday, a little rain and some wind, but today.....LOTS of rain and LOTS of wind. I just keep sayin a little prayer the electricity won't go out!! We've had some flickers where you had to reset all the clocks in the house, but I really hate when the electricity goes down. Bummer, so keep your fingers crossed!! The weather outside is the exact opposite of how I feel on the inside. What a contradiction. I'm sitting here with my IPOD clock thingie turned up full blast, making jewelry and having the best time. The rain pounding and the wind whooshing is a really cool sound when you think about. I like these kinds of days sometimes. We turned the AC down really low in case it goes out, so the house will stay cooler longer if it does. So I'm sitting here listening right now to Eric Clapton singing "Cocaine". Does life get any better than this? It's cold inside which I love (except for the Florida Power bill), I'm surrounded with beautiful beads and such, some my own creation and I'm also using lots of broken up vintage beads to incorporate into my designs, the artistic juices are flowing and I'm listening to probably the best music EVER created. Thank the Lord for the 70's classic rock and roll, that's all I gotta say! Life is good people......no matter what is going on in your life.....you are here to experience it.......that's all I'm saying. Peace

Just Checkin' In......

2008-08-16T18:28:00.003-04:00

Hey everyone, how's it going for you? I have had a pretty busy week, so that's why no posts since last week. Last weekend the family went to Gainesville to see Lindsay graduate from the University of Florida. YAY!!! The ceremony was beautiful, Linz looked gorgeous, and a great time was had by all. After the ceremony, we all went out to eat at this Asian Fusion restaurant and I had the best shrimp thing for dinner. I'd like some right now actually! I've been watching the Olympics, but of course the one sport I love to watch has been relegated to starting around 1:00 AM, and that's of course, softball, so I've been taping and watching it the next day. I've also decided to make the big jump into starting my own jewelry business, since my bead making endeavor has been going really well. I get compliments when I wear my stuff and I made some things for my sister and her friend Steph, and they also tell me they are getting compliments. I'm gonna start small and go to a Arts/Crafts Festival locally and see how well the "public" likes my things, and then go from there. Kind of a riot huh, that I am only 9 weeks out from a bone marrow transplant, really not knowing if I'll live or die from this dreaded cancer, and here I am hoping to start my own business. What a hoot I am! I wonder what I think sometimes! Kate said she sees it as very life affirming and positive, so I'm gonna go with that! I'll take some photos soon and post them and I'd like your feedback too. Be honest.....you won't hurt my feelings :) So that's why I've been pretty busy this week, getting ready for the show and being out of town. I had an appt yesterday with the doc's office......didn't see him, that's next week....just did the blood thing with of course my favorite person, Tonya, and guess what?? The ole platelets have moved up again, so all's still looking pretty good. The whites and reds are still a wee bit below normal, but hey, I'm still recovering and we'll give them time. They are just below the normal range though, so nothing to get excited about. Guess that's it for now. Talk to you in a few days!

Yippee Yi Yo Yi Yay.....

2008-08-08T17:04:00.004-04:00

Two bits, four bits, six bits, a dollar.......all for Jan's Platelets, stand up and Holler!! As you can probably tell I went to Dr. Nair today and had the usual bloodwork done, and lo and behold, the platelets are comin in at 107! Last week as you'll recall they registered a lousy 71 on the platelet report card, having been in the hundreds since I had been home. My oh so smart doctor, thought it may be the the medication to prevent shingles, and that's why he makes the big bucks folks, he was right! That's a heavy load off my mind to have them back at somewhat closer to the normal range. So I'm to stay off the meds for another week, and see what the numbers are then. If they're still OK then I'll start back on the med, taking it once a day instead of twice like I had been doing. All in all, whites are still a bit low and so are the reds, but nothing to get concerned about, just the normal fluctuations we expect. So yay for my platelets......way to go little guys :) And yes, I do talk to my body quite alot......trying to be as complementary as possible, but when I have an issue with it, I am diplomatic but forceful about correcting itself. Somebody has to keep this Multiple Myeloma in line! Well, just wanted to give you the latest result. Now I'm gonna go pack for my weekend in Gainesville, to see my baby graduate from the #1 Party School!! I wonder if that's written on the diploma anywhere? I'll read it carefully and let you know :)

The Moon or Something.......

2008-08-06T19:31:00.003-04:00

Is it a summer equinox? Are we having an eclipse I don't know about? The reason I ask is that although I have been very busy today, I have this underlying philosophical thread running through my brain. Perhaps it is leftover chemo or maybe just the Universe sending me some sort of message that I need to rummage through some cereal boxes and see if there is one of those "decoder rings" they used to give as a prize so I can figure it out! I've written a bunch of thoughts down in my trusty notebook, my maybe one day will turn into a book of essays on Living with Cancer, but for the time being, I'm just going to log them in my notebook......give them a once over after a day or two to see if they make sense.......and then I'll share them with you.

Helen Keller......

2008-08-06T08:59:00.002-04:00

While reading some things the other day,I came across a quote by Helen Keller. Now, I don't think ANYONE would argue that this woman is the epitome of determination. The quote from her reads: " Character cannot be developed in ease and quiet. Only through experience of trial and and suffering can the soul be strengthened, ambition inspired and success achieved." Wow.....if only I could be so profound! This quote really stopped me in my tracks and caused me to think very deeply (ouch.....my brain hurts cuz I got no hair to cushion it!) So I get to thinking, dangerous I know, that each and every one of us must be so dang strong because all of us in our own ways have lived through trials and suffering. Some really really BIG stuff and some not so big, but none the less has caused a blip in our lives as a lesson for us, big or small. Is it to appreciate good health? Is it to learn to blow off the little daily irritations? Is it to enjoy family and friends? We each have our own lessons to learn, some we have to learn all by ourselves, and others we learn in the company of others.

The Graduation Party......

2008-08-02T19:29:00.002-04:00

Last weekend Lindsay's Dad, Kevin, threw her a "Graduation from University of Florida" Party. Here's where I say>>>GO GATORS! It was a quick trip for Mom and I since we didn't leave till Sat. morning, got there about noon, hung out at Kate's where I saw Bonnie, who I hadn't seen in quite some time (good to see you Bon..you look great!), and then got dressed and headed to Kevin's house for the big shindig. Kevin and Ashley did an awesome job decorating the house and patio, all with the good ole Orange and Blue and there, of course, was tons of food and anything you could have possibly wanted to drink. There were lots of people there.......some I knew and some I didn't. I have to say I haven't been to a party in quite some time, and I had such a GREAT time. The best part was seeing people I hadn't seen in almost 20 years!! Everyone looked good and I was just the social butterfly flitted from one person to the next and playing catch-up with all these people I used to hang out with all the time. My favorite person to see, who I hadn't seen in so long, was my friend Colleen. Colleen, you look exactly like you did the day we met so long ago and I was so happy to see you and Chrystal. Colleen and I go way back to when the kids were about 2 or so....Linz wasn't even born yet and and Colleen is her God-Mother. We lost track in some way and now have reconnected for which I am so grateful. I must say that of all the times we have spent together with and without the kids, that we BOTH have a particular snapshot of a time etched in our memory, was amazing to me. When I started to talk about it, you finished my sentence!! I was surprised, and yet not, in some way, as we always had a spiritual connection too. I also of course, loved seeing my Mother in Law and my 2 nieces Kristy and Pepper along of course with my sis in law, Kathy. She has come to visit me since I've been back from Moffitt and was going to be one of my primary caregivers when we thought I was going to come home sick. Luckily, I didn't need her for that, but always enjoy her company and visits. All in all, everyone had a great time and I can't believe my baby is graduating. More on that and "The Move" later when I am out of denial :)

The Mind is a Wondrous Thing....

2008-08-01T16:06:00.002-04:00

Some people have a great memory and some people have a bad memory. Which is the best to have? Why do they differ from person to person? I'm blessed with a horrible memory, and always have been. It has nothing to do with "chemo brain" either. I use the word "blessed" because in many ways it is a blessing. The "bad stuff" in life doesn't really stick with me, but on the down side, lots of fun and happy memories aren't there either. Oh sure, I can remember lots of stuff, I haven't lost my mind completely!! But all in all, I think having a bad memory overall, allows me to really live "one day at a time" and not worry about lots of stuff, because it just doesn't stay in my brain long enough to stir things up and cause trouble. On the other hand, if you have one of those terrific memories and remember EVERYTHING, then can you ever really "let go" and live each day to it's fullest because you are just stuffed with so many memories, both good and bad, that it seems to me it interferes in the present. I'm just sayin.... I really don't know which one is the best to have, but I think I'll continue to say "blessed" when talking about my bad memory. I'd much rather not hang on to past hurts (real or imagined) and dwell on things my memory may drag to the surface, when I can live each new day brand new and not drag old shit into it. I'm just sayin.... Well, yesterday was my 2 month anniversary of my BMT and I went to the doctors for the usual bloodwork and checkup. My bloodwork that's done in the office all came back pretty good except for my platelets which by the numbers of 2 weeks ago I reported they were damn near the normal range and so yesterday I was expecting to hit the mark. ARRRRRRGGGGGGGG.......I hate this disease. I hate cancer. Last week my platelet level was 138, and 140 is the beginning of the normal range. Well, yesterday, it measures 71!! When Dawn, my nurse, gave me the results I said, "oh no, this can't be right, 2 weeks ago I was 138." She said well I can get more blood if you think it's ot right, maybe it clotted or something and that can change the results. So again I get stuck for a blood draw and it came back again at 71. So I'm pretty bummed and told Dr. Nair that and he said that if my hematacrit had also been low he would be concerned, but the Acyclovir medication I'm on to prevent shingles (which is easy for BMT patients to acquire because our immune systems are still growing) can cause it to screw around with my platelet levels. When I asked why so good 2 weeks ago and now so low, he said that actually the last number was surprisingly high and 71 is the more accurate number since the platelets are the last to become normal. So he's tending to think it's the medication, so I'm to stop taking it as of last night for a week and we'll re-do my bloodwork next week. I'm trying not to become overly anxious about it, but see the hold cancer has on you? When you finally get to a point where you're feeling good, not dog ass tired like you have been for over a year, you get a new interest and are having fun again, you go on short trips and have fun....getting back to normal really, then all of the sudden.....BAM>>>>>JAN, DON'T FORGET YOU HAVE CANCER. It just pisses me off. You try to forget about the ugly monster that's trying to take over your life, and you let your guard down and start to be normal, and then in some way, shape or form, you're reminded of it's presence. Oh well, lesson learned. I'll have to keep my guard up at all times and learn to create a balance between living life normally DESPITE having cancer. Cancer Sucks.

Still Here.....

2008-07-29T15:14:00.004-04:00

Sorry I haven't written lately, I''ve just been so busy lately with making beads, and then stringing them into necklaces, keychains and other fun stuff, that the day is gone before I know it! I also wasn't here over the weekend as we made a quick trip to West Palm for Lindsay's Graduation Party thrown by her Dad, Kevin. More details on the party later, but I do want to make another trip down south to get together with some High School friends I haven't seen in awhile and to also get together with some other people I saw at the Party. And of course to visit my sissie and family too!!! Now that I have the go-ahead to be "normal"......watch out is all I'm sayin!! I still feel pretty dang good, just some fatigue but not as bad as when I was on chemo. It's hard to believe that just 7 short weeks ago I was in the Moffitt Cancer Hospital for a Bone Marrow Transplant, and not even 2 months later I feel so good!! This Thursday will be my 2 month mark and I see Dr. Nair for bloodwork so we'll see how the numbers look then. I'll keep you posted. This is short and sweet, I know, but I promise to give you all the details in a few days, as I am waiting for a new torch head to arrive, so making beads won't take up so much time, at least for the next 3 days or so. Stay tuned!! Oh yeah, be sure to look at the Party Photos I've just posted :)

Tired and Bowling..............

2008-07-21T13:55:00.003-04:00

The dogs woke me up at 6:15 am barking their fool heads off. I'm the kind of person, sorry to say, that once I come out of that certain depth of sleep there is NO WAY I'm going back to sleep. I hate that. I've always been that way and probably always will be. I've always been so jealous of people that can sleep through anything. And no matter what.......once I'm up , I'm up and I also have NEVER been able to take a nap when it's daylight. I have tried over the years, believe me, because some days I have been so dog ass tired and yet could never fall asleep during the day. So the dogs pissed me off when I looked at the clock and saw the time.......dang.....the Today Show isn't even on yet! So I just started my normal routine of letting them out, starting the coffee and getting the newspaper. The problem is it's only 2:00 pm right now and I feel like it's at least 6:00 pm!! The little shits. Needless to say, I'm pretty tired right now, but nothing to do about it except go to bed early tonite, which I totally plan on doing. Lindsay left yesterday to go back to Gainesville, after being home for the weekend. Her and Anthony just hung out on Friday night and on Saturday afternoon we all went up to the bowling alley to bowl a few games with all his family, so I finally got to meet all the them. We had a good time and I attempted to bowl 1 game. What I mean by attempt was I could not bend at the waist like you should do when bowling when you deliver the ball and I guess it's because my lower back is so messed up. I bowled the worst game of my life too, as I used to be a damn good bowler but alas......no more :( Not that I was ever in a league or anything, it was just that I would normally bowl at least a 150 or so. My highest game ever was a 260. AHHHH.....The glory days LOL

A Surreal Moment..........

2008-07-20T17:16:00.003-04:00

When I was at Dr. Nair's the other day and went back to the chemo room for my bone strengthening IV, I had a very surreal 7 minutes and 25 seconds. How do I know it was 7 minutes and 25 seconds, you ask? Well, I'm sitting there with my IPOD on, and it's turned up to the maximum volume, so the music is just my whole world just then. Then on comes Pink Floyd's "Comfortably Numb". Now, now.....it was not a flashback!! The words are just so awesome and the voices and here I was in just a very not normal place and the 2 things combined to make the next 7 minutes and 25 seconds surreal. I looked around the room and I'm surrounded by 11 other people sitting in the exact same tan rocker/recliners with tall IV poles by their sides with clear tubing attached to people's arms or chests with various colors of liquid dripping into their veins. I slowly kinda stared at each and every persons face and they all had different looks on their faces. Some people were tired, some bored, some reading books, some watching TV, some sleeping, some looked sick, and another woman looked as if she had been crying very hard before she came in to get hooked up. This lasted the length of the song.... for 7 minutes and 25 seconds. I told my sister this story and then she asked me......."What were you feeling when this happened?" I had to think awhile before I had an answer, because there were no feelings at all which is very odd. I felt as if I was not a part of this scene and that I was an observer only. That I was meant to just observe and file it away. I know it just had to be a combination of THAT particular song in THAT particular place at THAT particular time, because the next song that came on was Lynrd Skynrd's "What's your Name?" and I immediately snapped out of it. One of my many surreal cancer moments!! LOL

Check Up at 5 Weeks Home.....

2008-07-17T16:49:00.003-04:00

Today is Thursday July 17th and I've been home from Moffitt 5 weeks today, and feeling great. I had an appointment with my local oncologist, Dr. Nair, today as well as starting my once a month treatment of IV Zometa which I need for bone strengthening, since Multiple Myeloma attacks the bone. So my favorite gal, Tonya, called me in for the usual temperature taking,blood pressure taking and weight....which by the way is still at 96 pounds, even after eating a humongous ice cream sundae with fudge sauce and whipped cream everyday as my snack!! Then I go into a room and see the doctor and then on to the IV room for my infusion which takes about an hour. I have such great news from my doctor today. While talking how things were going in general, he then gave me a copy of my bloodwork which is just AMAZING!! He told me that in all his years of working with MM patients, that my bloodwork has recovered faster than anyone he can remember. He said usually that the blood numbers will go up and down and eventually stabilize. My white blood cells have been in the normal range since I've been home, my red cells are a little low, but nothing to be crazy about and the last blood cells to engraft in my marrow will be my platelets. Well the normal # for platelets to be is 140 and today mine were 138!! Woo-Wee. He told me that I am right now, in the place they would expect me to be at the 6 month mark!! What great news is that??? I knew I was feeling good, and now the numbers prove it. Yee-Haa. I am one happy camper. I also went out last nite to meet my friend Bobbie for an early dinner at Chili's and had a great time catching up with her. Bobbie is such a wonderful, warm and caring person and I enjoy so much our time together. Melissa, her daughter stopped by to see me too and it was great seeing her. Liss and Linz have played softball together for a bajillion years! Just wanted to share my great news with everyone. Blessings to all.