First of all, I voted. I am in the cancer ward and I voted. Americans: you now have no excuse.
Second, I’m thumb typing this entry. Wish me luck.
Third, thanks for all your kind messages. I cannot keep up with all of them or give a customized account of my condition to everyone, so I hope this will suffice until I can respond personally.
I’ve been here for a full week. I have had so many tests and things done to me: CT, MRI, X-Ray, swallowing, blood, ECG, EKG, etc.
We are still waiting for some definitive answers.
Here are the main updates. I’ll try and do shorter posts more often — though not if I’m feeling bad.
How I am feeling:
I am sleeping. One does not normally check into the hospital for help sleeping but in my case the sleep has been a major boon. I was waking up coughing all the time at home—like every half hour or more—and it was kind of like torture. Codeine worked for a few days and then didn’t. I felt like I was slowly going mad. Now I don’t. They wake me up here for pills poking and prodding but I am sleeping through the night.
I can breathe. Having the fluid removed from my lungs has made a huge difference. I am being “weaned” off oxygen. While resting my blood o2 is in the low-mid 90s which is a great sign. I am hoping I can go off in the next few days but am not rushing it. However, my body is still producing fluid which would impede my breathing. More on that in a moment.
When not tethered to machines I can walk around. With physical therapy I am working on basic endurance stuff since I spent a few days in a bed. I can circumnavigate the unit and I think today I’ll get to use my cane instead of a walker.
So that’s immediately physical stuff.
What the hell is wrong with me:
Cancer. But of an uncertain kind. We are still waiting for cell stains and other tests to come back. Including a machine learning based test, naturally. The current theory is that a dedifferentiated kind of cancer is starting to take over in my lungs. There is no clear why—the attending oncologist used a wildflowers metaphor. The good news is that if that’s the case, it could respond well to IV chemo and immunotherapy, which would be more appropriate as a plan of attack than the pills I’m currently taking (though the old cancer is probably in there hanging out too). My best guess is that the doctors will go ahead and do the IV chemo before being absolutely sure, because it’s better to hit it sooner and that’s how cancer medicine here works. Apparently there are other options if it doesn’t work but we didn’t get into that. I will post a quick update if IV chemotherapy starts.
One of the ways cancer in your lungs can kill you is by producing a lot of fluid, which is what happened to me (obviously not the killing part). “Pleural effusion.” So it is likely in the next couple days that I will have one or two ports put in my chest, that I can use the drain my lungs at home with this rather elaborate kit that looks like a cheap chemistry set. It’s a nice invention for independence though because it just means adding 30 minutes of stuff to my shower and then going about my day.
Swallowing. While all the breathing stuff has been going on I’ve also been having swallowing issues. I had thought my swallowing issues were aggravated by all the coughing I’ve been doing. (Some of you have seen me cough up food in the middle of a meal—not fun for anyone). Unfortunately, according to a video test, that is not the case. Instead, I have muscle atrophy in my pharynx. Essentially. It’s not strong enough and food gets stuck there. Most of the hospital’s puréed food is too thick so there have been some unpleasant episodes around eating. The new plan is having Carrie bring in stuff of the correct texture for lunch and dinner, and they are pushing the Ensures. Post-hospital, this seems like the thing I can handle by a) cooking for myself and choosing wisely what I do and don’t eat (banana bread, and probably most bread, I will dearly miss you!) and b) eating very slowly, like I’ve been told how skinny people eat (=may be 100% bulkshit, idk, not skinny). I’ve lost about 30 pounds since I arrived in Cambridge so it certainly works as a diet plan.
There’s neurology stuff to write about but it’s not related to me cancer as far as we know, so I’m going to punt on that.
How I am feeling about all this: honestly, I am still processing. I am philosophical about it. I feel safe and well looked after in the hospital, which is a big step up from moments of fear being unable to catch by breath, heightened by sleep deprivation. I am nervous about what torments await with IV chemo but love the idea of Something Being Done (as a friend put it), and there is a small chance I could even wind up in remission at the end of this which has never been a possibility for me. No promises though! I would love to go home but need to be ready to go home, which means being able to care for myself more than when I came in.
Fun hospital fact: whenever they give me cancer meds, it takes two nurses. All the codes and names are checked. It’s like launching an ICBM in the movies.