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Baby Steps

Well, I'm back in Seattle. It's been just over four weeks since my last radiation treatment, and just over five since my last dose of chemo. I was told that recovery from the first phase of treatment (six weeks of radiation+chemo, although really the surgical removal of the tumor was the very first phase of treatment) would take two to four weeks. I had arrogantly convinced myself, however, that I was in such great shape that I would push my way through the recovery more quickly than that. After all, they told me that fatigue would be the worst side effect of radiation, and for me the nausea was much worse than the fatigue. So of course I immediately felt completely exhausted as soon as the radiation treatments stopped. I basically spent the next couple of weeks asleep. But surely I'd recover after two weeks of sleep? Nope. I got to my parents' winter home in the California desert and basically slept for two more weeks. By the end of that my appetite had recovered somewhat and I was slightly less exhausted, but the emphasis would be on somewhat and slightly. Baby steps, we're talking.

So I got back on Wednesday, and Thursday was my first return to the UW Medical Center since my last radiation session. I got an MRI, and I spoke with Dr Mrugala, who will be the oncologist for the next phase of treatment. The MRI showed that the tumor has not returned yet. This isn't a surprise, but of course in the hours before the MRI I was able to convince myself that the treatment had actually failed and my brain was now full of cancer and I was about to die. What a relief that this was a bunch of baloney, eh? But the fact that the tumor hasn't returned doesn't mean the cancer is gone. At this point the cancer I have is still incurable. It's still likely to kill me eventually, but it's apparently not going to do so immediately. The goal of the next phase of treatment is to keep the cancer suppressed, so I can take a break from treatment a year from now and hopefully travel and enjoy whatever time still remains for me.

So what is the next phase of treatment? Part of it is a continuation of chemo. I will be taking it for five consecutive days, followed by three weeks off. 21 days after the first dose (I believe) I'll have my blood drawn, and a week after that I'll consult Dr. Mrugala. This pattern will last for twelve months. For the first five day period, the dosage of chemo will be double what I was taking in the first phase. If the first blood test is okay, the dosage will increase by some amount. If the chemo ever causes problems with my platelet count, I may need to take a break from the chemo, so this could actually end up taking longer than twelve months.

The other thing that will be happening during this phase is that I'll be wearing the Optune. I've mentioned the Optune before. It's an electromagnetic device you wear on your head that attempts to interfere with the mitosis of the cancer cells. I will wear this the whole time I'm taking chemo, but what it means to wear it is still something I have to learn about. Apparently representatives of the company will actually come to my house to show me how to use it. I know I have to shave my head and periodically rearrange the leads that attach to my skin, but that's about all I know yet. Dr Mrugala is very enthusiastic about the Optune, but yesterday he said the trials show an increase of lifespan of only five months. I suppose that's an average, but it's hard to feel very enthusiastic about five months at this point myself. I guess I'll have to see how much of a pain in the ass it is to wear, and what kind of side effects it has before I decide whether it's worth it. The company claims the only side effects are occasional skin irritation, but we shall see.

Anyway, the goal of all this, again, is to keep the cancer at bay so that at the end of this phase of treatment I can take a break from treatment and go enjoy life for a while. Which isn't to say that I won't be able to enjoy life in the meantime. Hopefully this phase of treatment won't be as awful as the last one. And I've had some news from the UW Benefits Office that leaves me feeling very hopeful right now. There are still some tees to dot and eyes to cross, but if all goes well, it appears my Long Term Disability coverage will be restored, which will allow me to retire more comfortably than the other alternative I had. Knock wood! More details on that once they are written in stone.

Everything seems to take so much longer than expected, but I guess that's the way it is with baby steps. Now I think it's nap time.

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( 6 comments — Leave a comment )
replyhazy
Mar. 25th, 2016 05:28 pm (UTC)
Thanks for letting us know how things are going.

I had to immediately go read about the Optune, which seems like total science fiction and therefore is exactly right for you. While reading their site I found out that "Optune will not interfere with a microwave oven." Well, thank goodness for that.

Have a great nap.
gerisullivan
Mar. 25th, 2016 10:53 pm (UTC)
An excellent report all around, much as you weren't expecting t/h/e/ S/p/a/n/i/s/h/ I/n/q/u/i/s/i/t/i/o/n/ to sleep for a month.

Knocking wood!
kalimac
Mar. 25th, 2016 10:57 pm (UTC)
Well, that news from the Benefits Office is the most extremely excellent in your post, for as we all know it's harder to argue with HR than with a tumor.

Keep on plugging, my friend.
randy_byers
Mar. 26th, 2016 03:55 am (UTC)
Indeed. The funny thing is that they seem to have come to this resolution before they received the letter from me that was drafted by a lawyer demanding that they give me a copy of my entire file.

Edited at 2016-03-26 03:55 am (UTC)
smofbabe
Mar. 26th, 2016 10:08 am (UTC)
Appreciate your keeping us in the loop. Hope the next phase of treatment, difficult as it will be, is as successful as the first bit. And crossing fingers that it is indeed good news from the UW Benefits Office! Hang in there!
jophan
Mar. 30th, 2016 09:19 am (UTC)
Keeping my fingers crossed, both for benefits and treatment!
( 6 comments — Leave a comment )

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