#also he weighed me and i’ve lost 7 kilos since last seeing him

[mcdolann]

yaaaaaay so happyyyyy my kidney function has gone up (slightly but any progress is amazing) and also received the highest compliment a doctor can give (that i’m a fascinating case and he wants me to come back for a long appointment to talk to me more about everything especially my mental health) literally over the moon rn

[braindamageforbeginners]

Some writing prompts

Cycle 7, Day 7

So, as some of you know, I go to a writing class/seminar for cancer patients. I realize that’s not exactly something pre-GBM-me would’ve been interested in, particularly the warm, fuzzy, safe, and judgment-free aspects, but, again, if the choice is adapt and evolve or die, well, I haven’t been to Jiro Ono’s sushi place, yet. Also, I like the folks there.

Anyway, there isn’t anything big or terribly interesting in today’s post, I’m still scheduled to get strapped down and injected with Marizomib tomorrow morning, and I didn’t feel up to writing about the weird lizard situation in the backyard, so I thought I’d give a better conclusion than I gave in the group:

Prompt - Affirmative writing: Imagine 6 months from today. Looking inot the future, write a descriptive portrait about yourself. To guide your writing, consider: What do you look like at your personal best six months from now? What is the image that comes to your mind? Describe your face and how it reflects your state of mind... AUTHOR’S NOTE: I trimmed the prompt quite a bit, because the outcome wasn’t what I originally thought, and it did bring to mind a very serious question that I will have to face in the next six months even if this New Jersey wetlands of a body exceeds every expectation (in my body’s defense so far, I’ve dramatically exceeded everyone’s expectations at every turn, which is one of the few things holding me together psychologically). Also, even though I usually try for a mostly-accurate recounting of events, this is more-fictional-than-real (about a 65-35 split). DECEMBER, 2017: “What is my long-term prognosis, really?” I asked Senior Warlock. I didn’t expect him to give me a real answer. One of the first things to go out the window when you get diagnosed with a disease for which science has no established, effective treatment is useful data, terrifying as it might be. Mad Scientist occasionally gave me full information, but we’d had a ten-year doctor-patient relationship at that point. “Excellent,” he said, “we’re putting you on the very most aggressive, successful treatment we can, and you have several genetic markers hat are extremely favorable.” MID-FEBRUARY, 2018 “The scan looks great. Based on your interest, you’re already in the extended treatment trial,” said Research Coordinator. “You’ve tolerated both the chemo and radiation much better than most patients.” “I tolerated it well?!”  I sputtered, “I spent an hour a week complaining about side effects to you!” “Yeah, but compared to average, you’re doing much better.” That was the moment i began to realize that Senior Warlock wasn’t being cheerful, or even terribly honest - he was striking an odd Faustian pact, “We will kill either your disease or you; right now, we’re betting on you.” JULY 31 2018 “The scan looks great. No growth in any of your tumor sites, and improvement in the stroke area here, and here,” said Senior Warlock. I hope everyone reading this feels - at some point - the wash of relief I did in that moment. It’s also easy to idealize how I’ll look six months from now, because it pretty much looks how I look at this moment. After realizing just how dangerous cancer treatment can be, I’ve put myself on a training regimen and diet that I’m sure would wear out some semi-professional sports teams. I took my end of that deal with the devil very seriously - I’m at near-peak cardiac health, I’ve lost multiple inches from my waistline, and I’ve put on five kilos of muscle. I know from reading the fine-print (and my own experience in the med-tech industry) that patients can be cut from an experimental program for almost any reason, including (and most-likely) that they aren’t tolerating it well. I’m not complaining about these rules - they exist to prevent the sort of corruption and medical malpractice we’ve seen in inhumane experiments like Josef Mengele or the Tuskegee airmen, even if those rules occasionally cut both ways. I’ve gone for the approach from the film “Miracle,” when the coach shouts to one of the players, “If you want to make this team, you’re going to have to perform at a level that forces me to keep you here.” Same goes here; if I want to continue in a potentially-dangerous, experimental chemo program, I am going to have to be so absurdly healthy that it would reflect poorly on my physicians and the biotech company that owns the Marizomib patent if I were to suddenly die or refuse treatment. For those of you wondering what that looks like physically, well, my DMV photo was taken when I was 19, over a dozen years ago. The TSA now doesn’t give me a second glance to double-check my photo (for better or worse, my physical best and worst aren’t as far apart as my sense of vanity might like) “Do you want to continue treatment at this point?” asks senior Warlock. At every two-cycle check-in, he legally has to ask me this. Fortunately, I’ve also figured out the dialogue that orients me properly and establishes some level of informed consent. “Well,” I started, “Given the probabilities on cases like mine, and the symptoms and complaints in those patients, and compared to the side-effects I’ve complained of and other patients in the program have established; do the likely risks of treatment outweigh the benefits?” I asked. For those of you following at home, this is part of the core of medical ethics, beneficence vs nonmaleficence (the dictum to do good vs not actively worsening a situation). “No,” he says. :”Then I’ll be in the infusion center on Tuesday,” I say. MID-FEBRUARY, 2019 “The scan’s clean,” said Warlock Junior. This is it. The moment I’ve worked for the last 15 months. On the other hand, physically miserable as it’s been this is the longest I’ve been unquestionably tumor-free since 2007. And, even though the side-effects of long-term treatment are unpleasant, i know that, given enough time, they will become lethal. On the other hand, GBM tends to come back more frequently than that shark in Jaws, and if it does so now, it’ll likely be resistant to the only two established, effective forms of GBM chemotherapeutic agents. On the other hand, this is a chance to have my Tuesdays back, not to feel confused or disoriented five days of the month. The general rule of chronic cancers is that patients have to go five years before they’re considered medically cured. I’ve only made it a little over one. Just a measly 20%. I feel - for the first time in a year - calm and quiet. Possibly even confident. I know it’s an illusion that will last less than a minute, because, for the first time in over a decade, I also know what the next five minutes will look like,. “Given how well you’ve tolerated treatment, you’re a candidate for several other long-term therapies that are in clinical trials,” he continued. I hesitate, weighing the options.

The Prompt: Breaking your heart, both in the negative connotation, but in a sense of opening you to the beauty and possibilities of life. “When you see beauty in desolation, it changes something inside you. Desolation tries to colonize you.” - Jeff Vandermeer When you’re young, everything moves quickly, far too quickly, really. Remember before you were ten? Before you were five? I’d bet those memories are filled with noise and light. Then you move - imperceptibly in an ideal situation, in a few stuttering leaps in mine, when you no longer have to worry about being the center of the world you inhabit; you have to become comfortable imagining the world without you in it. It’s beyond frightening, until you realize that much of the planet will remain unchanged. We are guests at the art museum, not residents. As disturbing as that is, it’s also a little comforting; we can’t take it with us, but we can’t burn it, either.