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The latest round

I probably won't be writing health updates as frequently as I have been, but that's not a promise. It's just that things could be settling into a routine for the rest of the year, and I don't know how much there will be to report. To review, the new routine is five days in a row of oral chemo (Temodar), then a blood test 21 days after the first dose and another blood test 28 days after the first dose, and repeat. So each cycle in this round of treatment lasts approximately 28 days. However, if the blood tests discover problems (particularly low platelet counts), the next round of chemo could be delayed, disrupting the 28 day cycle. They will do an MRI every two months to check on whether the tumor has returned.

Anyway, I finished the first five-day round of chemo on April 3rd, and only now have I gone to look at my last health update and see that I've already written about this. Not that I expect anyone to remember the details I've reported before, but neither do I want to bore everyone with needless repetition. So to quickly reprise, I felt okay during the five days I took the chemo, but basically on day six I lost my appetite and my stamina. This actually seemed to get steadily worse over the next couple of weeks, until on Saturday the 16th I started feeling mentally sluggish and slightly confused, as well as physically wiped out and uninterested in food. I concluded that I was suffering the "chemo brain" of song and story. However, when I saw my nurse practitioner after the blood draw on the 21st, she concluded that I was actually just not getting enough calories into my system to fuel my mighty brain. My blood pressure was also incredibly low, and she thought that this was also caused by a lack of calories.

I've also lost around twelve pounds since the end of radiation, which may not sound like much, but I was only 170 pounds to start with. Carrie asked if my sister was still around, and I said no. "Do you think that's why you're losing weight?" she asked.

I had to laugh. I remember thinking I was never very hungry even when LaVelle was here, but she was always cooking meals and offering me something, and no doubt I ate at least a little every time. So yeah, probably not having someone offering me food all the time made a difference.

In any event, Carrie's recommendation, since my appetite is still basically non-existent, was to eat small meals more frequently. She recommended some things I could eat that would have more calories in them, and she also set me up to talk to a nutritionist later today. So I've been trying to get more calories into my system since then, and it seems to be working. I still lack stamina for extended walks and still sleep probably at least half of every 24 hour period, but my mental sluggishness and feeling of light-headedness has receded. I even did some strenuous yardwork yesterday without completely collapsing when I stopped.

So as of yesterday's blood labs my platelet counts are at the edge of acceptable (102, with below 100 considered the danger zone), but I started the next round of chemo last night. Because of how crappy I was feeling on the 21st, it was decided not to increase the dosage as they had intended to do with this round. It was also decided that I won't start using the Optune for at least another month. I'm confused about whether my insurance company has actually agreed to pay for the Optune anyway. My treatment team thinks they have, but I've gotten ambiguous statements from the company that makes the Optune and from my insurance company.

Speaking of which, after conversations with the Benefits Office and my HR rep, I think I understand better how things will go with my extended medical leave, which is what I'm on right now. Still don't have final resolution with the insurance company that offers the long term disability insurance, but I believe all paperwork claiming benefits has been filed. Hopefully that will be finalized soon. Meanwhile, many grateful thanks to all of my co-workers who have donated shared leave to me to help me out since I used up all my own leave. I continue to feel pretty positive about humanity right at the moment.



( 6 comments — Leave a comment )
Apr. 28th, 2016 05:39 pm (UTC)
Wow. A lot to process. I'm amazed at how much (it seems like) you've been able to stay on top of all the paperwork! Very glad that the prognosis appears somewhat rosier than previously thought. I don't recall the thing about the original plan being to up the chemo dose -- the second-round of chemo already started out at twice the dose you took when you were doing radiation too, yes? Anyway, a relief that it's not going even higher. Grateful for your nurse practitioner and LaVelle and Carrie (which Carrie?) and your warm-and-fuzzies about our beloved, benighted species.
Apr. 28th, 2016 05:55 pm (UTC)
Carrie is Carrie Graham, the nurse practitioner. Yes, they doubled the dose of chemo that I had been taking during radiation, but they had intended (and probably still do) to bump it up a little bit more for the rest of this phase.
Apr. 28th, 2016 08:30 pm (UTC)
Thanks for the update!

Yeah, losing 7% of your weight is rather a lot in a couple of months. I share your laughter at how LaVelle's presence (with steady offerings of food) helped you get enough calories before.

Are almonds and other nuts palatable at this point? If so, they might help convey more calories to your mighty brain. Protein, too, along with the bunches o'fat.

Kudos to your co-workers for donating shared leave!
Apr. 28th, 2016 11:18 pm (UTC)
I put walnuts in my protein shakes, which goes down just fine, but I find it harder to eat pistachios than I used to. I've started eating peanut butter, raisins, and honey on toast. Maybe I should pick up some unsalted almonds and see how those taste.
Apr. 29th, 2016 07:33 pm (UTC)
I for one will not get bored with your medical updates. Sorry you're having a hard time with post-chemo. I sincerely hope your application for long-term disability gets resolved quickly; you don't need more things to worry about.

Our medical insurance and disability insurance bureaucracies are infuriating and opaque. After dealing with my aunt's situation, I am more and more hoping for a president and a legislature that will make the changes we need so that people don't fall through the cracks.

Anyway, very glad you have a support structure! Even though we don't know each other IRL, you're in my thoughts.
Apr. 30th, 2016 03:59 am (UTC)
Yes, the legislature is the hard thing to get right for insurance reform, especially the Senate. Maybe we'll get there eventually, but I don't expect to live to see it at this point. At least more people are getting covered now, although far too many still aren't.

Anyway, thanks for your kind thoughts, stranger! Likewise, I wish you the best with your own health problems.
( 6 comments — Leave a comment )

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