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.

Intimations of Mortality

Philosophers, because they tell the truth, are often hated. A philosopher will, after hearing me whine about having an incurable, universally-fatal cancer, tell me that there is nothing substantially different about us: we all live under a sentence of death attached to a date uncertain and should all live accordingly.The assertion infuriates me. While being theoretically and logically correct,

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End of Life Issues, Ulysses (Tennyson), Part I

This poem, one of the most misunderstood in the English language, addresses end-of-life issues common to everyone, not just restless ancient heroes nor those of us fighting multiple myeloma. Ulysses is clearly in the End Game. I am presenting it “as is” except for marking some lines to linger over, but later may discuss the poem in detail for what it tells us about reactions to common end-game

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Am I Coming or Going?

The Wedding SiteA huge part of me is completely absorbed with the wedding and its usual and customary ordeals. We have the license. There are rings. There is a date (Friday, September 4th) and a place (the wedding gazebo/chuppah on the grounds of the 1938 Spanish Revival/Beaux-Arts County Administration Center). Travel plans for old friends. A best man and an usherette. Tequila and mariachis!Yet

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Update

I saw my consultant last night. I’m due for a bone marrow biopsy, probably at the end of the month. This is to check on what is going on following the SCT and to supplement blood test results. I had some blood taken yesterday but I won’t know the results for a little while. I also requested that I have a scan of my hip as this is still causing me grief and pain most days, though it is controllable with pain killers.
I hope to be back at work at the beginning of September and have a meeting with my manager next week to discuss my phased return. The thought at the moment is to go back for two or three days a week and build up the hours over the next month or three. In a way I’m looking forward to being back. We’ll see.

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.

Andre’s Obituary Notice

My brother-in-law works for the weekly paper where we had Andre’s obituary notice published. It was also mentioned in a roadracing magazine. We are planning a secular memorial service (celebration of his life seems to be the better term) in Dallas, Texas, next Saturday, August 8, a day before my birthday.

To all who sent me condolences, words of support, and their fondest memories of Andre, I want to thank you from the bottom of my heart. Take care of one another.

Hugs,
Ed

REMISSION!!!

With everyone’s fingers crossed and prayers we have reached REMISSION!

Mark and I seen Dr. Zangari today and he went over all labs and the bone marrow biopsy. He is not showing any markers of the myeloma. Dr. Zangari was almost amazed at how well Mark has done. I am not going to get all technical here with numbers and charts. I will just tell you that Mark went from 95% down to 0.2%
Mark will still be on a maintenance program. He will go in for medications for the next year. They will do lab work and keep a close eye to make sure this cancer does not raise its ugly head back up.
We don’t see Dr. Z for three more months.. No offence but YAY!
Dr. Z told Mark be careful with his back, but go do what you like to do. Of course use caution around sick people. It will still be hard for him to shake off an illness.
Mark still will tire easily and will need time to get his strength back.
So now i would like to thank just some of our team that has worked so hard to get Mark to this point.

FIRST MARK FOR BEING A FIGHTER

Dr. Zangari and Dr.Tricot


The Amazing Andrea Noordewier our PA

Our Coordinator Carol Neilson

Celeste and the girls in the Office Benadetta and Jenna

There are so many more to acknowledge, like all the nurses in the BMT Infusion room Katrina Dr Z’s Nurse. All our family and friend’s, all our new friend we have made along this journey
thank you to each one of you.
You are the one’s that got us through the worst part of this.
Don’t stop looking at Mark’s page there will still be updates on how he is doing and what he is doing.