Stable: the label

I'm here to tell you my latest scan was stable. Stable is good. And yet I can't pretend I didn't sit in the doctor's office a wee bit disappointed. It felt like, things were so good out of the gate! And now the proverbial horse has slowed to a steady clip. Not that there's anything wrong with slow & steady. There's nothing wrong with it. But I suppose I'd raised my hopes pretty high with this clinical trial. 

I'd read that another ovarian cancer patient had had a complete response while on the trial. COMPLETE RESPONSE! And, I'd had what qualifies for a partial response my very first time getting the drugs. Amazing! And then it just, what, stopped? 

No, the thing is that immunotherapy works very very differently from chemotherapy, mostly in ways I clearly do not understand. Chemo attacks the cells themselves. Immuno teaches your cells to recognize cancer and then go after them. It works more slowly. It requires patience and trust, two things I do not have much of. 

I wanted to to be the medical marvel, right? Complete response in just a few months! Unheard of! Harbinger to getting these drugs FDA-approved for frontline treatment so that thousands of future OC patients will not have to suffer through chemo, the same combination of chemo they've been giving for 3 decades!

I can't speak for other cancer patients, but I do go around with this teeny tiny place in my head where all the miraculous stuff can be true. It's not based on logic, or even wise mind. This place is all emotional. Maybe it's self-protection, or my own brand of misguided hope. It has broken my heart several times. But obviously it continues. 

"Stable is good" goes the medical mantra. "Stable is good, but a complete response would be better," goes my head. What are the chances that my tumor(s) could reduce even further. "Not likely," is the response. I told the doctor I suppose my initial positive response wasn't "likely" either, but it happened. She was nonplussed. My kingdom for one oncologist who exudes something resembling the teeny, tiniest atom of hope. Tone of voice goes a long way. 

So this weekend I will be working on shifting my perspective, trying not to obsess that this is just one more case of initial positive response, followed by stability, followed by progression. Just because that's how it has gone doesn't mean that's how it will go. Immunotherapy is in it for the long haul? And I can't always expect remission (but why?) Stable is good.  Hare, meet tortoise. Stable is good.

investigating

hi. long time no update.  

i'm just home from a delightful 3-night stay in the city, alas at the hospital where I undergo treatments for the clinical trial. so, not really delightful. killer views from the 11th floor oncology ward, though, no joke. 

last week, I had more side effects from the trial drug, similar to those i'd had in the first week, but more intense. I kept waiting for them to resolve like before, but they did not, and i was getting more & more dehydrated. So I called the doctor and headed into the ER. 

I had tests to rule out the possibility of a bacterial infection, got a LOT of fluids, potassium, magnesium, the whole lot.colitis is a really common side effect of immunotherapy drugs, and the verdict is that I have a mild case of it-- not bad enough to warrant pausing the trial and going on steroids though, thankfully.

next week i have another scan, then i'm due to start the next cycle of the trial. can't say i'm not nervous for that. i mean, right now all my stomach can tolerate is oatmeal and bananas and while i love these things, it is just a matter of time before i'm going to "need" mushroom pizza (well done). 

you know, i don't often pause to consider that the name of each of my drugs is "investigational agent." and now I know why. I spent a LOT of time in that hospital bed looking at that killer view, imagining what exactly was getting investigated. and how. i considered the choice of the word "agent" which in a certain (cheeky) context can sound mysterious, like science is sending in its secret special force, its best people.

now it sounds a lot less cheeky. i do a lot of mental gymnastics trying to keep up this idea that i'm a "normal" person, and occasionally i get a smack of reality. 

the good news is that so far, the drugs are working. things are stable, my tumor marker is down into normal range for the first time in over a year (!!) so, i'll add colitis to the list of things to be managed, and keep focused on the bigger picture.