Allergy season, kind of

so here's what happened pretty much just after I wrote to you last week about my excellent scan. I mean, like I wrote you from the hospital chair, so it was, literally a few minutes after I wrote you. I had an allergic reaction to one of the drugs! It was seriously unpleasant (requisite inability to breathe, followed by intense headache and lots of, well, barfing. 

I somehow miraculously have made it through 2 years and 4 months of cancer without barfing, which i felt pretty proud of, actually. i mean nobody *likes* doing it, but since i've been a small child, i have somehow willed my body not to do it for years at a time. I would rather have had a stomachache for 3 weeks then barf for 2 minutes. 

It was also baffling to me, since this is the drug I'd already had 3 times without incident. BUT. i'm told immunotherapy drugs can work this way -- reactions/side effects at various times while you're taking them. no rhyme nor reason, really -- just, on this one day, my body was not having it. 

I had a million questions/fears: does this mean I can't get the drug anymore and that I'm off of the trial? because you know, this stuff is currently literally saving my life, and much as i detest the whole vomiting angle, i will subject myself to it if it means i can still get the drug. small child Andi would be mortified to see this shift in my attitude, but then, she'd probably be pretty upset with the whole cancer situation as well. 

But it's not a dealbreaker. I am not off of the trial. Allergic reactions to medications happen all the time, and even more than that in early clinical trials where the drugs are not yet approved by the FDA (did i mention this was an early trial? more on trials and their phases later). When I had a recurrence last year, I discovered I was allergic to one of the platinum drugs, carboplatin. This was much less dramatic tho, just a rash on the inside of my arms! 

What happens now is when I go in for my next infusion (next Thursday), they will give me a lot of "pre-meds" -- antihistamines and steroids and anti-nausea drugs -- before the infusion. Then they'll slow down the drip, so instead of taking an hour, it might take 3 or 4. They did something similar with the carboplatin last year, but it was a 12-hour drip on the oncology floor of the hospital during the pandemic. The pandemic is clearly still on, but this will take place on a small floor with other trial patients (subjects?). 

It's a bit of a logistical pain, because now instead of being able to take myself to and from the hospital, I'll need someone to drive me home on account of the benadryl drowsiness. 

It was weird and also not weird at all, how quickly things go when you're in treatment. I guess it's teaching me not to go to emotional extremes, more or less. 

When I called to check in with the nurse yesterday, she asked me if I followed my CA-125 (remember that tumor marker I talked about ad infinitum several posts ago?). I said I didn't, not closely, because I had become obsessed with it in the past. But she wanted to tell me how much mine had improved since getting this treatment, and it was A LOT. It had gone down by about 90% since May, which is pretty remarkable. 

Also, wow. Apparently I had so much more cancer in my body in May, yet did not feel really bad at all. I hate how that's possible. And I had so much more cancer in May. It wasn't good. It is better now, and that's where my focus should be and it mostly is... but I went through part of yesterday imagining how close I'd been to being in really rough shape. It's fucking terrifying. 

I guess this is why people say to have hope because you're possibly always just one treatment decision away from being better. I mostly find it precarious as hell, and I wonder if I will spend the rest of my life (however long), walking around on proverbial eggshells. This is such a weird ride.... 

yes, virginia, there is some good news

so i had my CT scan on monday of this week. tuesday i went back to the hospital for a needle biopsy, got changed into hospital clothes, when the radiologist appeared and said, well, there's not enough disease for us to take a sample from: you can go home. WHAT?

yes, apparently, all the cancer that was hanging around my stomach area is gone. there's still some cancer, but not enough to draw a sample on. so you guys? i guess this stuff is working! it's the first bit of good news in a long time (almost a year, i think). 

i'm thrilled and still cautious because that's been a pattern -- to have the cancer respond at the beginning of a treatment when the drugs are new to my body,  and then to have the cancer figure out a way around it by the middle. so i am SO HAPPY this stuff seems to be working, but i'm also a bit guarded. 

still, i put on a bathing suit and went floating in my sister's pool for like 3 hours. still, i'm considering buying myself a present or two (although, to be fair, i kind of do that on the regular, if you count markers and journals and small sparkly orange trinkets).

today i'm back at the hospital to begin Cycle 2 of the treatment. the trial nurse told me the scan showed an overall tumor reduction of 25%, which is fantastic for a first scan. fingers crossed ok? may the immunotherapy gods be ever in my favor, or something like that. 

Perspective & the un-get-throughable nature of things

 I haven't had a lot of time for reflection and perspective lately, but then it occurs to me that if I'm waiting for a chunk of time for things to slow down so that I can get said perspective, I'm going to be waiting for ages. And I don't have ages. Well, none of us do, technically. 

I've been thinking a lot how I am now entering my 3rd year with this big fucking cancer thing in my life. I guess the whole time, in the back of my mind, I kept thinking that at some point, yeah, it's going to be over, the way it's always been in my life (or at least I thought) --- you know, you go through something that seems impossibly hard, sometimes unbearably so, and you take Churchill's advice to "keep going," and eventually, there you are on the other side of it. 

You are wiser and stronger and sadder maybe, but the worst of the storm has surely passed. Now you pick up the pieces that need picking up. Now you pay attention more and you see how there's something like lightness coming in to balance things out. This has been my experience up until now and I guess this is how I thought the world worked. No one was spared difficulty, but if you steeled your way through -- and there always did seem to be a way through -- you were met on the other side with something softer. Ebb and flow of life, all in balance, etc. etc. 

It's just -- this thing, I realized now, I may not ever get through. It might be something un-get-throughable. One bad year becomes two and two bad years turn into a lifestyle of sorts. And all the why?questions are still unanswerable. All of the anger at the bad luck of it has not abated. It's a very weird place to be. 

In my in-treatment cancer support group, I met a woman who was also going through ovarian cancer. She had been diagnosed stage IV and had just completed her first year since diagnosis, and was already on her third kind of chemo because the first two were not doing anything for her. 

I wanted to reach out and I tried a little -- I sponsored her in one of those Cancer 5K thingies -- wrote her a few emails -- but it's hard -- because you never know how private people want to be about what's going on. She was gracious, but very guarded, so I did not push anything. When I hadn't seen her in our Zoom group for a while, I looked up her name and found her obituary. It was surprising and not surprising. It was devastating and not. She had been diagnosed after me and did not even make it to two years. This is just the deal with OC. Some stage IV people live for a decade. Some for not even a year. 

And it hits home of course, that it could have easily been me. And so while I'm seriously hopeful about the immunotherapy trial I'm on, I'm also constantly, chronically aware that if it doesn't work, or if it works for a little while and then stops working (which has been a pattern with me so far), I'm going to be in a pretty hard place. I'm not going down that dark rabbit hole today, but as ever the difficulty in living lies in knowing how close I am to not living. 

Every day, especially now as I feel pretty good, I try to live as "normally" as possible -- doing freelance work, walking my sister's dog, writing poems, talking to my mom. But compartmentalizing that awareness of the reality of my situation, that takes more energy than I care to mention. Not to let in the thoughts, about funerals and wills and what I'd be leaving to the world and why me -- it is some days so tremendously heavy.

But listen. this trial is a good trial. Immunotherapy is good stuff. On the days I get an infusion, I wear a t-shirt with an image of a monoclonal antibody on it (it's actually a really pretty design!), to you know, show my support. I try to think of any reactions as good signs that my immune system is gearing up, learning new stuff about fighting off the enemy. I have to spend time in this positive place, too. 

None of any of this is new stuff -- in fact it's practically all I write about here, the whys and the weight and the waiting. the lethality and the longing (forgive my alliteration -- i have spent far too much time in my life writing ad copy). I now have something close to 100 (!!) poems about it (what to do with them is a whole other post). So maybe there's not some "other side"to get to -- maybe the way the world works is less about being borne through things, and more about integrating whatever it is that happens to show up. Even if what shows up is an absolute shitshow. Maybe especially then. 

TOO MUCH THINKING. I need to go eat baked goods and sass the TV. 

More later....