Trial and tribulations

I know it's been longer than usual since I last posted anything. I can't lie; the weeks since starting the clinical trial have been tough, for all kinds of reasons. But the more I don't write about it, the more it kind of hangs around festering in my head, and I seriously do not need another side effect! So here we go. 

The week leading up to the beginning of the trial was just busy and annoying in the sense of having many procedures (CT scan, MRI of brain, needle biopsy of tumor, EKG, etc) in order to establish a baseline. So everything now, be it progress or decline, is measured against these latest results. On the one hand, I had all of these procedures before (except for the MRI of my brain), so it wasn't super-scary to go through them again. On the other hand, why would ANYONE in their right mind voluntarily subject themselves to these tests? Ugh. Not to mention being in the hospital for ages..... 

The trial started on a Thursday, June 10. I received both trial drugs, one after another, a lot like getting chemo except that this was not chemo. That all went ok. The next day I needed to go back to the hospital for blood draws. OK there too. 

And then. On Sunday the 13 I started feeling pretty awful. I knew there could be side effects of all different sorts, but I'd also gotten the overall impression that immunotherapy drug side effects were a lot less harsh and intense than those for chemotherapy. Monday the 14th I kind of staggered to the hospital to get my blood drawn and while checking my vital signs, the nurse discovered I had a fever of 101.8. It hadn't even occurred to me to take my temperature (why?). 

I spent the whole day there having every test under the the sun, including a chest x-ray, and 2 bags of fluids since I was dehydrated as well. All the tests were negative for anything bacterial. Conclusion from trial doctor: unrelated viral infection. WHAT? it made no sense to me, given that immuno drugs can spike a fever and i asked as much, but the doctor said it had been too soon since getting the drugs for me to get a fever. Because you know, no one else on the trial had gotten a fever so quickly, and that's what they have to go by. 

BUT. the fever continued. I couldn't eat very much, which meant it was harder for me to stay hydrated even tho i was drinking tons of water. And when I was dehydrated, which was often, my body was doing this weird gagging thing. Not like nausea or dry heaves or whatever. Just like something triggering my gag reflex every 5 minutes. Wednesday I had lots of GI distress, so even harder to stay hydrated.

I went back to the hospital Thursday for more scheduled blood draws, needed to get more fluids, tried to explain about the weird gagging thing. Trial doctor concluded that yes, this was clearly a reaction to the drugs because the fever was still present. You think? Yeah, so apparently I now hold the title for Person to React Earliest to Immunotherapy Drugs. A little something for your case study, doc?

BUT. Another thing the Dr. said was that so far in the trial, there seemed to be some correlation between people who responded early to the drug and people whose cancer was obliterated. (she didn't actually say obliterated; that's my attempt at embellishment). So there's a hopeful statement for all my troubles. 

I have lots of thoughts around hopeful statements these days, and it's hard to keep my head from going down about 17 different dark paths/rabbit holes. I know, as a therapist once told me, that bad shit is always in your head, and so is the positive shit, and you decide who to give the proverbial microphone to. But who could have imagined such a scenario? I suspect it was advice for smaller things. More musings of both kinds ahead. 

blues & beginnings

 hey. i totally did hack off a lot of my hair and dye it blue:

i am not usually a fan of photos of myself but i thought this warranted a bit of bravery in that department.

tomorrow I start the preliminary testing for the trial: CT scan, brain MRI (why? just to get a baseline, i think), a gallon of my blood... and next week I'll have a needle biopsy so they can get a recent sample of the tumor cells. apparently, they change over time, and what worked for me a couple of years ago will not necessarily (DUH) work for me now. 

over the long weekend, the husband and i ventured up to maine for a few days, just for a change of scenery before all the appointments and everything start. on the one hand, it was glorious to see people coming back out on the streets, eating in restaurants, hugging again!, smiling and just generally enjoying the small freedoms that come with something terrible becoming not as terrible.

on the other hand, it was a bit difficult to witness and not be able to join 100%. this cancer was in my body before the pandemic, and frustratingly, it continues living there after. and again (ad nauseum, really), i struggle with trying to balance that fact with a more "positive outlook" and "normal" life.

what excited me particularly about immunotherapy (the type of drugs i'll be getting on this trial) was the idea that you could teach your body to fight the "bad guys" on its own.. a kind of redirect of sorts. any cell can go rogue or have a misstep at any time, so it made sense to me that your immune system could, with the help of modern medicine, help rein it in, correct it, guide it back on a healthier path, almost like mentoring it? sure, why not?

i don't think it works that way exactly, but that's what had been (has been?) giving me hope. i think i was thinking 100% cancer-free, gone, baby, gone, remission for decades! i don't think it works that way, either, but as my former therapist so often points out to me: we don't know the future. we can guess, given any amount of scientific information, but honestly, we don't know. 

and if you're going to hope, why not hope for the absolute best possible outcome? go big, right?

so that's where i'm at: a bit nervous and maybe overly optimistic heading into this thing. a bit sad that i can't join the world 100% in its gleefulness of vaccines and renewed freedoms, but not entirely forlorn, either. as long as i unfollow all the cancer people and keep off Twitter, i think i can continue it.