Tl;dr we got some good news, and we are waiting for a little more.
This morning we awoke before dawn to get to the Mass General for an 8:30 appointment–first bloods, then nurse practitioner, then oncologist. (There’s probably a whole post in how I am now very slow in the morning compared to my former self.)
Pretty quickly into the appointment, we found out it was good news, which was confirmed by the oncologist: based on the CT scan, the drugs seem to be working. At least some of the new masses in my lungs have reduced in size. This is huge news because it means the treatment is working. It doesn’t mean the treatment will work forever or that I’ll be cured or in remission or anything. But in the near term I should continue to improve. I know I said my suffering is essentially meaningless in a previous post, but it is a lot easier to put up with side effects when a treatment is working to keep you alive.
The other Very Good Sign is that they demoted me from every-two-week appointments to a monthly schedule, which suggests they are confident in my condition continuing to improve, or at least to stay stable.
The NP also took me on a walk around the clinic floor without oxygen to see how my breathing was. Afterwards I was told to drop my oxygen to 2 litres from 3 and try breathing plain room air when I am sitting still. I think I may need some extra oxygen for talking while sitting, but we will see. That’s great news. I’ve been on 2 litres all afternoon and I think it’s ok.
This was also the first appointment I did on foot rather than being wheeled around in a wheelchair. We got dropped off at the actual building (long story but that usually doesn’t happen) and I decided I wanted to go for it.
For the fever, we are going to try having me self-manage it, which simply means going off the meds for 2-3 days when it seems my fever is starting to go up, and keeping a calendar. The other option is steroids, but the problem is that they are not a long-term solution, and the hope is that I can stay on the medication long term. The oncologist said that some of her patients stop having the fevers after awhile, so for now I will just try to pay attention and hope.
For the vomiting, all I can do is hit it preemptively with drugs faster than I am now, so I will experiment with that and live with being drugged up more than I would like.
One bit of unfinished business: we don’t have the MRI results yet. I have taken up the practice of letting the doctor explain test results to me rather than reading them myself, for all the reasons one might imagine that’s a good thing to do. But I’ll have to make an exception in this case. I would expect the MRI would not have bad news in it given the CT results, but one doesn’t know until they know.
So what does it all mean?
After we came home, Carrie bought a ticket back to California on the 3rd of January. We’re going to have a nice winter break here and then try this sabbatical thing. If all goes well, I get 5 more semi-normal months in Cambridge and she gets 6 more semi-normal months at Stanford, and maybe I’ll even be able to join her this summer.
In kickstarter language, my “stretch goal” is to be able to visit her in California over spring break, but that’s entirely dependent on my breathing and oxygen needs. If that doesn’t work, she’ll be stuck visiting Cambridge instead.
“Independent living” can mean many different things. I am going to have to lean on local friends for a few things I cannot yet do myself–mostly involving bits of physical labour like carrying things up stairs to the apartment. I am sure the first week is going to be especially challenging as I discover all the things I didn’t account for. I am going to have to be extra vigilant about my body temperatures and cut off my vomiting cycles at the beginning. But that’s not fundamentally different from Carrie having to be extra vigilant about her blood sugars.
Radcliffe doesn’t start up officially again until the end of January, but the building is open to fellows. So I have a lot of flexibility those first few weeks to try and fail–and to work on my strength and stamina. My goal will be going into work at least 3 days a week, allowing for medical appointments and the like.
After the fall I’ve had, I consider the news today a major win. Both of us just feel very relieved. We are both cautiously optimistic for the next few months. I still have a long way to go, and there are no guarantees, but I’m used to living with uncertainty. This is just a new mode of uncertainty.