Just starting to emerge from the latest, and most pernicious phase of this whole adventure. Honestly, I'm really starting to regret getting a brain tumor in the first place.
Appetite went to zero. Things tasted terrible. Stupid goal of getting below 200 pounds reached. Currently at 193 and have re-set my FitBit to congratulate me when I gain weight.
I did the first round of bonus chemo the week of Labor Day. I will never enjoy Labor Day again. Have had maybe three full meals since then. Lots of Ensure, popsicles, granola bars, and bananas. And by lots, I mean some combination that gets me to near 2,000 calories per day. Never thought I'd be counting calories, or that it would be to ensure I get enough.
Second round of bonus chemo was scheduled to start yesterday. We switched over to Dr. Vailliant's new practice and saw him last Friday. We talked about my food issues. I told him the synthetic cannabinoid, which although it has a pretty cool name, did nothing for me. I also told him of friends and family who answered my plausibly-deniable call for non-synthetic relief with, well, non-synthetic relief. Thanks to redacted, redacted, and especially redacted for the gummies, drops, and the chocolate covered espresso beans. Unfortunately, these solutions were also largely unhelpful.
Dr. V asked "have you tried anything (voice lowering), naughty?"
"Um, besides the edibles I just admitted to?" Doc, love ya, but I'm not sure you and I see our relationship in the same way.
"Like, chocolate, or some other sweets."
Oh! That's naughty for Dr. V. Yes, sugary foods are still edible, though still need to balance the whole diabetes thing. Should be in your chart somewhere.
I do admit that there have been a number of days when the vast majority of my caloric intake has been through a Starbuck's Venti Caramel Frappuccino (a naughty 510 calories).
I asked him about the costs and benefits of doing bonus round two.
He was typically circumspect about what the research shows, what we could do later, and what holding off means. To his credit, he did recommend we hold off on bonus round two, as eating, gaining energy (and weight), and getting back to some semblance of normal is the priority right now. So bonus round two is on hold, for at least four more weeks.
I am very excited about that, but have this irrational little voice in my head that is telling me, "great. You want to enjoy a freaking cheeseburger, so you just talked yourself out of life saving treatment."
You know what gets rid of that irrational little voice? A hefty dose of chemo. So keep it up, asshole, and I will poison you out of my head.
Dr. V did say that it takes about four weeks for the chemo effects to fully subside. I am at 3 1/2 weeks. And whether that is true or just helped me think things were on the verge of getting better, I am actually slowly starting to get there. Still not hungry, but the thought of food has moved from awful to neutral. I can slam an Ensure in 4 seconds. And not everything has an aftertaste of straw. Baby steps.
Oh, and I drove yesterday. Dropped off my dry cleaning, picked up a prescription, and went to the HEB to refresh my Ensure supply. About 1.2 miles round trip, but an amazing journey. Taking things slow. Won't do my cross-country tour of minor-league jai alai stadiums till November.
Small goals - eating; driving; gaining weight; exercising; then cycling. Getting back in touch with people. Repatriating the non-synthetic gifts I received with redacted, redacted, and especially redacted, should they want them back. I pulled out from this weekend's MS 150 and from the 1/3 of the Half Ironman late October. Those made me sad, but there is no way I could have been close to ready for either. Next year's goals.
And finally, trying to figure out what naughty things I should get. Been thinking about Sticky Toffee Pudding. Still in the mindset where I worry about eating something I really love, for fear of ruining it forever if it tastes terrible now. But I think I will just have to take that Sticky Toffee chance.
No comments:
Post a Comment