So, the good news is that I’m not in quarantine anymore, there are no new sarcomas, and my sarcomas are not growing.
The bad news is that the sarcomas haven’t shrunk since the previous scan and there’s no way to induce further shrinkage, so the best we can do now is aim for stable with a good quality of life.
That was not what I was expecting to hear from my oncologist. Also “quality of life” is an oddly terrifying phrase to hear because it somehow drives home the “terminal” aspect of “terminal disease.” Needless to say, there was not any bouncing with glee at the good news this time around. Instead there was serious discussion and decisions regarding my options.
I guess that’s another piece of good news — I have options. Here’s what we chose.
We’re going to be changing my chemo regimen to one that has a better clinical record of maintaining sarcoma stability. That means that I’ll be doing outpatient chemo instead of inpatient, which should at least make our schedule more predictable and be less of a hassle. I’ll get two drugs for 12 weeks, then switch to just one of those drugs after that.
The two drugs will be one that I have been getting and a new one that was just approved by the FDA in December 2016. The new drug is an antibody drug and has very few side effects. The one that I have been getting is the less toxic of the two drugs I had been receiving in my inpatient chemo, but it is the one that causes what I call “burning hand syndrome” where the palms of my hands feel for a day or two like they’re horrifically sunburned and for which the only relief is literally gently placing my hands on an ice pack. I’m lucky that this has only happened to my hands (so far) since for many patients it affects both the palms of their hands and the soles of their feet.
Suffice to say that the scan results are scary and not what I expected or wanted to hear at all. It’s been confirmed that I’ll be starting the new regimen on May 26. So yay for the next step?
As Jarrod says, we’re focusing on stability so that I stay alive long enough for the next amazing scientific breakthrough that actually cures me. Just because it seems impossible now doesn’t mean it won’t be possible next year. Also, I should be able to do a lot of living and I’m doing my best to do that (even if it does still, for now, include being more tired than a healthy person). I want to figure out what normal can look like. It will include us taking at least two weeks for a very delayed honeymoon. Right now we’re looking at January 2018 for that.
I should provide a general warning though that, depending on the day, my humor has taken a bit of a dark turn. It’s not stuff I’m likely to write (since I do edit these posts), but it might come our verbally. Today when I was happy and having a great time, I had to clarify that I meant something as “humorous, not depressing!” Until the words were out of my mouth I hadn’t realized that something that made me giggle inwardly might actually come off as depressing to others. I may be unaware that something comes off as morbid or dark, so please do feel free to say something. So long as you’re not judgmental about it (because, let’s face it, I have the gorram right to be morbid and dark in my humor if that’s what gets me through this), I’d much rather know if something I said came off as depressing rather than funny. I genuinely don’t want to depress people and I will say if I just need to be depressing and down in the dumps. What I ask of my friends and family is that you tell me if a joke doesn’t land or a comment sounds really depressing. Deal?
In the meantime, I’ll keep the “cautious optimism” that my oncologist has, and hold onto my faith that, as my favorite mystic wrote, “all will be well” even though I may have times of fear. I don’t believe that faith means that we have no fear, but that we keep trying to trust even when we’re angry and afraid. Between my faith, my friends, and my family (including my cat) I do believe that Jarrod and I will get through this.
There are still lots of reasons to smile (like getting to play with a friends’ awesome dog).