cancer – day 150

6:30AM: Well, here we go, appointment at 11AM. Last round of chemo this afternoon, or no? I change my vote. Let’s get it over with.

150 days. How long is that? Five months. Exactly. How about that.

8:30PM: I had to decide whether to do the last chemo or not today. The new doctor (Agarwal, the lung specialist) wasn’t making a recommendation; he was leaving it entirely up to me to decide what I felt was right and what I can handle. Heidi, my oncology nurse, was there too, which helped a lot because she knows my case history and she was there on Friday when Lombardi was testing the level of my neuropathy, so she knew exactly where we were at with that just a few days ago. We all (Agarwal, Heidi, Mark, and I) talked about what is known regarding the 4-series regime and how it was started and continued (because it works and they have all the stats on how much it reduces the 5-year risk of recurrence to do the 4-infusion series on a strict schedule). We also talked about my neuropathy, which is at a 2 on a 0 to 4 scale, so I’m halfway to the worst possible neuropathy. We did not talk about how much worse neuropathy can get, which in hindsight was dumb on my part, because it was the consideration of potentially permanent neuropathy that was making us all hesitant to do the last chemo. They have no way of knowing who is going to have permanent neuropathy or who is going to recover from it completely. The fact that I’ve had it all along isn’t a good sign, but the fact that I’ve had scattered intermittent good days gives me hope that with time it will be fully recoverable. It’ll make my work really difficult when I start trying to work for Chain again because my typing has gotten so bad with the numb and stinging fingertips that I’m slow and not even spell-check can fix all the typos I make now. I used to be such a fast and accurate typist too, so much so that it’s actually pretty amusing to go back over a journal entry or blog and realize how terribly typed it is, and have to take twice as long revising the entry before it can be posted. It’s truly laughable how bad my typing is right now. But here I am, typing away to keep my journal up to date and everyone informed of where we’re at. At least on a big day like today.

So the two big considerations were the known value of completing all four chemo infusions on schedule (we don’t know the stats on 3-session chemo, no one does it as a matter of treatment (there haven’t been any clinical trials on it), though plenty of people quit their chemo at some point because the side effects become too unbearable; while the second consideration was this unknown about potentially permanent neuropathy. Heidi and Manoj (Agarwal, the new medical oncologist) left the room so Mark and I could talk about it in private for a few minutes because I wanted to know what he felt and discuss it on a more personal level before making my final decision. The neuropathy hasn’t been as bad today as it was on the weekend, and Saturday was the worst I’ve had, where my whole right arm was useless and stinging and my right hand couldn’t even close, let alone pick anything up (maybe that’s something they’d classify as stage 3 neuropathy? I wonder). And I had that knock on the head, which could have had a lot to do with the effect in my right arm that started right after that massive whack under my desk.

Mark was leaning towards NOT doing the final chemo, at all, because of the potential neuropathy damage. It was similar to how he resisted chemo altogether until we got the oncotype dx score indicating how much chemo (and tamoxifen, darn it) would reduce my recurrence rate. I think it’s partly because he’s so close to it all now, he knows better than anyone how much pain and trauma I’ve had with all these side effects, and I’m sure it kills him to see me suffering and have so little he can do to help me feel better. That’s how I would feel as a caregiver, and then all there’s left to do is care about the patient and provide emotional support, which has been the hardest thing of all for Mark and the one thing seriously lacking in my “care” that I think I would have felt so much better having. But I’ve toughed it through so far, and this is the last time. We’re 2/3 through all of my chemo, only three or four weeks of bad stuff and then hopefully a small window of goodly health time before radiation.

I hope I can get home to my own place in Volcanoville for some of that break time between chemo and radiation. There’s an extra recovery week, maybe my carsickness won’t be so bad as to ruin my time at home if I can get there again.

And then I can get my cats out of the kennel! WhooHoo! I’m allowed to take care of them during radiation, no more worries about the bacteria and my immune system. I miss them so much, I can’t wait to have them here with me (even if they are locked up in just the spare bedroom like Mark said he’d allow . . . it’s unlikely that arrangement will last long with Mizzou, and if you have to put money on that battle of the wills, well, Mizzou is the better bet, he’s tenacious like me and won’t give up on something without decent reason).

Our appointment with Agarwal was at 11AM today, and it took a full hour, then we started chemo around 12:30PM and left around 4:30PM. Bless Mark, he essentially missed a whole day of work to be there for me and he never left my side for an instant. He let me win a game of scrabble, and then he read to me from The Celestine Prophecy, which is this thoroughly entertaining adventure book that actually really gets you thinking a lot about spirituality and similar matters. I hope we manage to continue the book reading thing, because this book would actually instigate a lot of fun conversations about spirituality and faith and beliefs that would be really interesting to have with Mark.

Side effects have already kicked in hard, though even with the tiredness I can’t seem to sleep yet. Today I actually got nauseous from the first drug they infused because they didn’t start with the ativan as usual. But once they got the ativan in, the nausea calmed down. Then around 2:30PM I started having what I call esophagus pain which is this swollen burning feeling in my esophagus that usually spreads down into my guts where it expands to what I have started calling “submarine warfare” for Mark to understand. It’s really more like the way neurons fire to communicate, but that analogy doesn’t make sense to everyone. I have this new med now called reglan that I’m supposed to take before eating, and it seems to take the edge off the submarine warfare though my esophagus still hurts. Also, water tastes terrible. I’ve started drinking from a hospital mug that measures quantity consumed and has a straw, and that seems to help, having a straw to prevent me from smelling the water or having to taste it all over my mouth to drink it. We stocked up on apple juice yesterday too though, which we’ve found I can drink fairly comfortably (though I am getting really tired of it now). Basically anything with flavoring is easier to drink than water. Why the supposedly tasteless water drink would bother me the most is strange, but it’s very common for chemo patients. So we keep a lot of other fluids around, especially the first two weeks of a chemo round.

Last really annoying side effect (besides the neuropathy) is that my eyes got really bad over the course of the day and now I can only type at the computer with those little magnifying glasses you can buy yourself at the drugstore. Right now I’m on the 2.5’s, but I think I’m going to have to switch to the heavier 3.0’s pretty soon if I stay at the computer. I’ve started playing World of Warcraft (a huge online multiplayer fantasy game) sometimes at night, but my eyes may not be up to it this evening.

Anyway, I really just wanted to let everyone know we did in fact go ahead with chemo today. We’ll see how the side effects pan out. Meanwhile, we’re back to the generally expected nausea, fatigue, esophagus pain, neuropathy (sheesh, I bumped my knee on the side table climbing onto the bed to fold laundry, and then I bumped my head on the dresser leaning down to put t-shirts in the bottom drawer). I walk around the house and bump into almost every corner with one arm or the other, and trip on the rugs consistently (but I haven’t fallen down yet). All the side effects bother me, but the eyesight changes and neuropathy are definitely the worst of the worst in terms of incapacitating me.