Gonna Do This in Parts One and Two

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....

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 :(

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......

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.....

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.......

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.....

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?