Saturday, May 28, 2011

Sleepless Nights are Conducive to Thinking and Making Decisions

I have been feeling generally sleep-deprived the last couple of days. Damn steroids. But the news that I can go off of them sooner rather than later - in less than two weeks - was very welcome news. The neurosurgeon allowed me to cut my dose from 4mg 4x/day (which he said was too much) to 4mg 3x/day. My fingers are still numb but I am steadier on my feet, so I made the decision to only take two doses a day until surgery.

Oh. I forgot to mention that surgery is Wednesday morning.

If my hand gets weaker and/or I feel unsteadier on my feet, I'll go back up to 3 doses. But I don't think I need it. I mean. It's only four more days until the sucker is taken out and I don't have to worry about swelling.

I slso decided to put off whole brain radiation for a couple of months - maybe to the end of summer. That is now a prophylactic treatment - to prevent regrowth. But I plan to ask Dr. K to put me on Tykerb again which is a drug like Herceptin but is a small enough molecule to cross the blood-brain barrier. If I can start taking that within a couple of weeks of surgery, I will have some preventive measures to keep any more brain tumors from growing. Tykerb is easier on my constitution.

I made this decision because I want to get stronger this summer. I feel like it was a long long winter and spring - I was tired a lot with that damn tumor under my armpit. It's gone and with no lymph nodes or lymph system, I presume that there will be no further cancer growth there. Chemotherapy last fall through January made me tired and by the time I had surgery, I really had no reserves to fight the infection. I am still recovering from the April 1 surgery and now I am 8-days post brain surgery and am contemplating another surgery in 4 days. I am bouncing back from these last two surgeries faster (which seems strange that you'd bounce back quicker from a brain surgery but there you have it).

I just want to spend the summer having fun, resting, and gaining strength. If I go on Tykerb, it can perhaps help with the tumor on the chest and it will protect my brain. If I can avoid the heavier-duty chemo (although Dr. K won't like that idea), I will get stronger faster. Radiation creates fatigue, but if I can delay that for a few months, I will get stronger faster. Tykerb would give me the same result, I think, that radiation would in terms of protecting my brain. If they press, I will consider radiation in late summer/early fall. That is soon enough, I think.

Doing this, going on Tykerb in addition to the Herceptin and Zometa I already get, will help me gain strength. That tumor on my chest didn't grow while I was Tykerb. I want to get back to "normal". I want to travel locally this summer, visit people, have fun. I am in a much better position to do that if I can delay radiation and heavy-duty chemo. Like I said earlier, I'm not convinced that heavier duty chemo is the way to go. I will, however, consider both if there any indications that the cancer keeps progressing this summer. But I don't think it will if I go on Tykerb.

I also decided the night before last that I will probably go on long-term disability this next school year. As I tried to go to sleep, I had morbid thoughts about not being around and concluded that life was too short to stress about work. I really want to spend the next year figuring out a treatment regimen (both western and alternative forms) that will get me into stable disease status. I felt like this last year and a half, I have been doing a half-ass job at work and a half-ass job at healing. Knowing I couldn't put my full energy into either made me feel conflicted all the time, worried about inconveniencing my colleagues, worried I wasn't doing enough for my health, and not having any energy. It's time to devote myself to healing and to let my colleagues get someone in there who can take over my duties so they don't have to wonder and I don't have to worry. At this point, I figure it will be the whole year. This will allow me to really consider a wide variety of options and being proactive instead of reactive with my treatment. I want to develop a range of spiritual and medical practices that will allow me to reach stable disease status. I can only do that if I don't have to worry about work.

When I reached that decision, I smiled and felt some measure of peace, even if I couldn't sleep.

So, that's the plan, man. I'm gonna try to start Tykerb within a couple of weeks of surgery. I will delay radiation until later this summer after I gain strength. I will continue with Herceptin and Zometa and will continue with my turmeric/mushroom paste on the skin tumor. I will gain strength and contemplate the things I can do to reach stable disease. : ) Sounds like a good summer, eh?


j said...

That sounds like a helluva plan. This is what disability benefits are for. I'm also pro-rest, pro-restore, pro-energy, and most importantly, pro-whatever you think you need to do in these next months as you figure out where this particular path is headed. For what it's worth, I'm taking semester a bit easy. I don't really have a work project organized, and that's fine with me. Like you (tho I realize our situations are quite different!), I want to enjoy my summer, take it all in. The best decision is the one that you have weighed and feel good about. We are the experts of our own lives, after all! IN CONCLUSION... Go, you.

j said...

Also, for what it's worth: I feel like we OWE it to our colleagues to take the benefits that are offered. I do not want anyone to say to someone else, "Why are you taking off all this time? Dr. F. only took ## weeks off..." We are privileged to have the jobs we have, do the work we do. Running ourselves into the ground doesn't make anything easier for anyone else in the bigger picture. It really doesn't. (And people want to step up. Just as you have done for other people, I'm sure, and continue to do.)