Chemo 2: The ReFuckUpening

I had my second dose of chemotherapy on 2014-08-29. The oncologist said that I had a particular bad reaction to the first dose, and one of the things you do for that is to reduce the the concentration of the chemotherapy drug. The other thing you do is take various prophylactic medicines to treat the side-effects of the treatment.

It is not going well. I still managed to be unable to do much more than lay around over the holiday weekend. It was way worse even than any time I remember being really really sick. Plus diarrhea. Plus fever high enough to talk to the on-call doctor, who at first said I could probably take some Tylenol and wait for morning, but then called back and, in light of my previous symptoms, recommended that I go to the ER.

I was there all night. They treated me with IV antibiotics and put in a call to the on-call oncologist, who apparently never returned their pages. Eventually they decided I could go home, and I got home about 7 AM.

Next came a recurrence of “thrush”, which is a fungal infection. This comes from the damage the chemo does to the immune system. Unfortunately, the medicine for the thrush gives me diarrhea.

I’m now ( 2014-09-08 ) about at the end of the range of dates where we would expect the maximum neutropenia (low white cell count). I’ve stopped the drug for the fungus, and am slowly starting to feel a little better. It’s still taking time, though.

After the first chemo, I didn’t want to go back for a second. I talked to the doctor about all the options, and my Spock-brain decided that the logical course is to try one more cycle of the chemo. If all the changes he suggested were to make a difference, then I might be able to get a net benefit from the chemo.

And now the Spock side of my brain is asking “Are you sure you really want to keep doing this?” I’m actively afraid to take the medicines that are supposed to make the side-effects from the chemo more tolerable, because their side effects are so bad. One of the bottles gives me nausea to look at. Oddly enough, I have had zero nausea from the chemo itself; I’ve only had nausea from other drugs that are supposed to fix problems caused by the chemo.

This is not going well at all, and I am questioning whether the chemotherapy is a real benefit or if it is just needless suffering.

This raises the question of what to do next, which comes in my next installment.

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6 Responses to Chemo 2: The ReFuckUpening

  1. Carolyn S says:

    Love your title. Very “Mr. Deity” (with a smidge of “Archer”-ness).

    I’m sorry this round hasn’t been any better – both for your misery, and for what it means in terms of perhaps taking a (possibly) life-prolonging treatment off the table.

    Meanwhile, there’s still banana bread in the fridge. Bisous, cherie. ;>

  2. ferthalangur says:

    Hi Mark,

    I can’t decide whether to respond by email or here or by phone or what. It feels sometimes like there is an implicit social sanction, even if I’m only imagining it, not to go to “The Dark Side” of these things when we’re hanging out in person.

    I would like you for you to be around for as long as possible … but not in exchange for your pain, discomfort and suffering. If I had to choose between three “good weeks” for you and be able to spend another good afternoon or two with you — or six to nine months of your feeling miserable and suffering, even if you were around and we could have more days together, I would choose the former. I don’t want you to suffer needlessly. Like you said a few posts ago, quoting Dr. House I believe … “There is no Happy Ending here.”

    It’s not me, of course. If it were me, I think the decision of whether to continue the chemo would be tied to what I thought that I wanted to do with the time I had left*. I think it also would depend on whether I knew how the chemo would affect the “end game” … when the chemo stops working, is it going to be a worse end then if I’d just let the cancer take me? Would the chemo put me in a position where I won’t have the option to end it myself when the time comes? I wouldn’t want to die in the hospital. I’m not even sure how I would feel about the palliative care, if it meant that I’d be so intoxicated on pain killers that I couldn’t think clearly.

    * I would be severely re-evaluating a lot of what is “important” if I were where you are now. Definitely would not bother going out to cut the grass this afternoon!



  3. Paula says:

    I rue the day I learned what neutropenia means. I have no words – just virtual hugs – and virtual balloons. Would love to share a hamburger with you (words I’ve never said to anyone before). xoxo /paula

  4. Tony Darnell says:

    Hi Mark,

    Rob said everything I was thinking but I wanted you to know I’m here, and reading, and wishing things were different. Like Rob, I too would like you to be around as long as possible but there is definitely a ‘quality of life’ vs more time component to what you’re going through.

    Of course this is easy for me to say, but for my part, I think I would want more control and less suffering for you than more time. As it appears with your recent experiences, the pain and discomfort you’re going through under chemo treatment would definitely make me re-think priorities and, as Rob said, what’s ‘important’. I’m sure you’re doing this.

    I can’t imagine how hard this must be for you, but please know I think of you every single day.

    Your friend always,

  5. Paula says:

    I don’t comment because I never know what to say. I just want to offer a virtual hug – and positive thoughts – that the doctors/tests/predictions are idiotic. Much love.

  6. Thank you all. For about a week, I’ve been enjoying feeling better and avoiding thinking about the cancer as much as I can. Today is the day to review the medical records and start making choices and taking action. I’l see what options make sense.

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