Countdown has begun!

Gene’s update: 4-14-10

Tax day…if only we really did have a say in how that money will be used….

We are in countdown. Gene has been home, or more accurately, on outpatient status, for three weeks. Last week especially, was a really good one. We were done with the daily trip for chemo, and that drug, while having no apparent negative side effects, eliminated the night sweats and temperature spikes that seem to be a marker of Gene’s leukemia. I was still on spring break, so we had a mostly relaxing week of feeling as normal as possible under the circumstances. Gene is a homebody anyway, so being limited to staying home was no problem for him. We had neighborhood walks almost everyday, and his appetite was great and he was able to gain back about 3-5 pounds.

Thursday we had our 3+ hour meeting with the transplant coordinator, got the calendar of events and all the scary news about drugs and side effects. I’d read most of the information, but for Gene, a lot of it was news. His commitment to a positive outlook is as strong as ever. When he asked me if they’d told us any statistical outcome data, I could reply honestly that, “no, they never told us any numbers”, but Gene later read one of the stats that haunts me, that the statistical outcomes for one-year survival for Bone Marrow Transplant include a 25% mortality rate. But of course, we will be in the other 75% because of the love, prayers, and incredible care and support we are receiving.

Had one of my first “caregiver lapses” and lessons, and then another one on top of that. It is a sobering responsibility to be in charge at home, as well as advocating at the hospital. When they changed his picc line dressing last Tuesday, a new nurse to us did it, we were busy chatting and Gene didn’t notice that she used a different type until she was done. It was a type that he’d had a bit of a reaction too, when he mentioned it, she offered to change it, but we didn’t want to trouble her. She discussed it with the charge nurse and a few others and the consensus was that it would be ok for this week. Later that day Gene thought it wasn’t completely sealed, but since we were returning in two days, we’d get it checked. On Thursday that nurse said it was ok, just some material from the application, blah, blah. On Saturday it started looking a little cloudy, but we were going back Monday, Gene didn’t want to deal with it (I guess neither did I), although he was touching the area a lot, no fever, so we left it to Monday. He broke the rules (so easy to do at home) and didn’t shower on Sunday so we didn’t look at it, and Monday it looked yucky. When we got to the hospital and they took it off there was some yeasty-diaper rash growth….about 8 nurses and specialists came in and made faces, doctor was almost sort of angry….”culture it…bacteria, virus, fungus, we’re getting that line out of there tomorrow”. They cleaned it up as best as possible, which burned for hours. That was Monday morning. Then we went home and Gene was not feeling so well. I was kicking myself for not attending to it Saturday, but hopefully it will be okay and also be a lesson.

Monday night he had to go back in for a planned night in the hospital so that Tuesday morning he could get a preliminary test of the super-chemo to see how fast it moves through his system. So at least I knew they were looking at it. After they completed that test they removed the line (scary right there, but seems to be fine). My friend Ruth picked him up from the hospital so that I could work that day.

That’s when the second lapse happened. I know they were giving him Atavan, a drug like Xanax, anti-anxiety, that also prevents seizures that the chemo drug can cause. (Just one of MANY awful possibilities that we try to put in the category of “and aspirin can kill you”). What they didn’t tell me was that he would be on it for 24 hours. I came home from school, he was watching tv, snacking. Things looked good so Susan and I went for our walk. When I got back he was crashed out and remained really out for a few hours at which point I called the hospital to ask if this was normal. That was when they told me that he was on this med every six hours, that we needed a prescription filled and it was two hours overdue.

Ran to store, got scrip, got it in him, he slept again. Woke him to eat, he ate really well….good thing since he’ll have to go almost 24 hours without eating. He crashed really heavily again….when it was time for his next dose I could hardly wake him. Called, Nurse said wait a few hours. He actually fell down upstairs in the bedroom while getting undressed. So I was panicked he’d try to go downstairs….and it affects short term memory so he’s not remembering much of this. So right now he is sleeping off the last dose, and we have to start to prepare to go back to the hospital at 2 for outpatient surgery to place a new central venous catheter, this time in his chest, for the transplant tranfusion, and all the rest of the stuff for the next 3+ months. So he’ll be out of it tonight and I’ll be monitoring for any signs that something is wrong from surgery that just placed a foreign object right into the top of his heart. Oy. I will mention that I think they should have called me to tell me about the need for the prescription, and to be aware of the heavy dose level, instead of telling Gene and counting on him to tell me….which he forgot to do, as short-term memory lapse is one of its side effects. Anyway, another learning experience.

Then tomorrow evening at 8 he checks back into the hospital for the beginning of this 3-6 week transplant process. Chemo and other drugs, anti-rejection, etc, start Friday. Transplant takes place next Friday, April 23. Transplant day is “day zero”, they also refer to it in the BMT world as “your second birthday”, but Gene is not embracing that notion too much at this point. Docs say that days 4-14 are the worst for side effects from chemo. Although Gene reiterated his mantra of “and maybe not”, regarding side effects, Dr. Mason was very firm in telling him that he would have nausea, diarrhea, and serious mouth sores (mucocitis), for which he would receive a pain pump and possibly need intravenous nutrition for a time. So that will be life for the two weeks after transplant, hopefully not any longer. Then the new cells start to grow and we see what happens. Dr. Mason said that we can predict with complete accuracy what the response to the chemo will be, but that the response to the new cells is a “black box” and each person is different, and there is a range of possible responses. My colleague Kate suggested a visualization/meditation that makes so much sense to me, but that I’ve not yet had a chance to share with Gene as he has been kind of distracted or drugged. She suggested that rather than focusing on anti-rejection, worrying about rejecting, that we think of it on a tribal level, the cells aren’t really foreign, but part of Gene’s genetric tribe, and he is welcoming them in. Makes good sense to me, we’ll see what Gene thinks…have a week to prepare.

So this has been long and filled with more detail than many of you needed or wanted, and less focused on the healing time we had at home and more on the initially challenging but eventually healing time in front of us. My friend Susan reminded me again yesterday to not focus on what is far ahead, just keep focusing on today….Gene’s mantra too.

So today, is getting this kinda doped-up guy safely into the shower, looking at the picc-line problem site, getting a super-shake made for post-surgery, packing the hospital day bag, and getting through this “minor” surgery safely. Hopefully tomorrow the drugs are out of his system and we can have some good relax time during the day, eating lots, doing the last “normal” for about a month or so.

This next week I think will be a good time to resume hospital visits. He may be really sleepy if they keep up this 2 mg. of Atavan every 6 hours…..we’ll see. But he’ll not be feeling badly from the chemo until the following week. So do come in if you are healthy and have time. If we are lucky, we’ll have our same room with a view, but they’ll know at the nurses station, and I’ll send out an update about visits once we know more there. Post-transplant, although he won’t be restricted from visitors we were told, I think I wouldn’t want visitors until we move out of that very difficult two-week period. So check with me on that.

Bottom line from medical team, “have him home by June”. I’ll send out an update pre-transplant so we can all do a “harmonic convergence” on welcoming Gene’s new cells, his new immune system, and encourage it to get busy taking out any remaining leukemia cells. Thanks for reading this very long blog, and thanks for your continued support, concern, care and love!

Big Nurse, aka, Mrs. Valles, aka g