At about 1pm today I was discharged from the hospital. With the help of the staff Carrie and I packed up and caught an Uber back to the apartment. I then very slowly, taking breaks, walked up the stairs and into my living room.
There’s going to be a bunch of rehab ahead, but since I had to be carried out of here 12 days ago, I’m very pleased with where I’m at, which is my own couch.
A little more about high grade metastatic thyroid cancer of the lungs with a BRAF-600 mutation. Morphologically, it looks totally different under a microscope than papillary thyroid cancer. However, the oncologist I spoke with this morning describes every cancer as having an “engine.” If the engine runs on the same principles, then the targeted therapy for BRAF mutation thyroid cancer should work. My Montreal oncologist, with whom I spoke last night, is also very enthusiastic.
I made it to almost horizontal sleeping last night.
Today was my best breathing day in weeks. I also did a lot more walking and stair climbing than I expected to be able to, though that may have been aided by an IV morphine dose I needed while being drained this afternoon. Apparently it also helps with shortness of breath. Speaking of which, almost no liquid came out during the draining, which may not mean much, or it could be another good sign.
The insertion site is still quite sore but that’s what the nighttime dilaudid and ambient synth music are for.
Carrie and I are talking about dining in neighbourhood restaurants within a couple block radius as early post-discharge goals.
A Provisional Diagnosis
A lot sure changes in a couple days. We saw my local oncologist today and I now have a provisional diagnosis and a treatment plan: high grade metastatic thyroid cancer of the lungs with a BRAF-600 mutation. It is technically not anaplastic thyroid cancer but that may be a diagnostic distinction without a difference. It is definitely not papillary thyroid cancer, which is what I did have. The cells look and behave differently. There is one more advanced genetic test from which we should get results in about 10 days which could change things. But for now that’s what it is.
Since last Friday I have been taking two new (to me) cancer drugs: dabrafenib and tremetinib. They think I have been responding well to those. Thank you lenvantinib for your 5.5 years of service, but you are done.
So the treatment plan is as follows: keep me on those, (doctors) read the report in 10 days and see if that changes anything, CT scan in 4-6 weeks. For now, no IV chemo or immunotherapy. That’s the next option if the d&t treatment doesn’t work or if there is another malignant
Dr Seuss Presents the PleurX
Yesterday I had a PleurX installed in my left lung. It’s a clever little drainage system that allows me to drain my pleural effusion outpatient rather than come in. The expectation is that my lungs will make less and less fluid over time with treatment and I will get it taken out in 1-3 months. the surgery itself was painless, but the unfurling of the lung is painful after the initial drainage so I spent a good chunk of the last 24 hours on Dilaudid. I also have a PICC (peripheral insertion central catheter) on my right side
Discharge Date
We are realistically looking at Monday or Tuesday because many things don’t really happen here on the weekend. There are some logistics like PleurX training; seeing if I can sleep flat or need a bed wedge at home (will try flat tonight), and doing my PT exercises which now include stairs to recondition me after this very sedentary (but restful) period in the hospital.
What all this means
I’m going to leave M or T with a lot of uncertainty. Nobody knows if this treatment will work. I expect the first few days at home will be challenging on their own, but then it will get easier and I’ll be able to start enjoying more of my sabbatical again, which is my most immediate goal.
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.
I’m writing to you from the cancer ward at Mass General Brigham Hospital, where my local oncologist works. I’m currently on an intense Dilaudid and Ativan hangover so this won’t be the usual thoughtful post. However, I can tell you that today is the first day I have felt better than the previous day for at least a couple weeks.
Thursday morning, after days of decline, I checked in to the hospital with extreme shortness of breath. Since then, the following things have happened:
People have drained about 3L of liquid from my right lung. Supposedly someone will come do my left lung today. I’ve had CT, MRI, Ultrasound, and X-ray scans of my body since Thursday. and a followup visit with a neurologist in the morning. Lots of new info, included a new diagnosis unrelated to the current crisis. I will save those details for later.
I have been diagnosed with pneumonia for a 5th time. The 4th course of antibiotics is currently in my bloodstream.
But the headline? I’M ON NEW CANCER DRUGS as of last night. I am really hoping they actually attack the stuff generating my symptoms. Which is probably a shift in my cancer. There are theories here but since we don’t know yet, I’d rather not run through them while also tripping balls.
I am not able to keep up with email, calls and messages for time being, but am grateful to receive them. I’ll keep you posted as best I can.
My news and the absurdity of modern industrial medicine. Or, how I got diagnosed with pneumonia for the third time in less than a month. This is a long one.
I realize that being a cancer patient is a weirdly privileged position. Of course, fuck cancer, but the infrastructure and level of care is a cut above everything else. Most sick, chronically ill, and disabled people have to fight their way through the thicket of a medical system that is not designed for them, and certainly not designed to treat people as whole persons. Having now wound a very tangled path through 4 different medical institutions in the Boston area, things are getting a little messy but I feel like things are finally moving in the right direction. I still feel awful but we’re taking some steps to help with that as well.
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First the major good news. My new local oncologist was sick, but had a Zoom meeting with Carrie and I. Which was good because there was a LOT of information and I was honestly starting to feel desperate. I wish that somehow I could have started with her, but that’s not how medical care works. She took her time, really listened, and walked us through all of the possibilities. A full hour. I explained that I can be infinitely patient around testing and uncertainty but I was desperate for symptom control so I could enjoy life a little more in the meantime. She prescribed codeine to see if that will control my cough at night. I hate the wooly feeling from opiates but sleep is nice. She prescribed something for my throat in case I have thrush. And she set in motion a series of events that should result in the delivery of oxygen today.
So then there’s the cancer, and my lungs. Based on comparing recent CT scans, her interpretation is that the pattern of growth on in my lungs is probably not typical disease progression for my kind of cancer. I will spare you the possibilities for now because we should have more information soon and rainbow of possibility is incredibly broad, with each possibility meaning completely different things. I will be having a bronchoscopy, hopefully next week, which will let them look into my lungs, and take a biopsy of the tissue that appears to be behaving differently, and also make sure that the blood I sometimes cough up is from my Very Raw Throat and not deeper down.
This is the course of action also recommended by my Montreal oncologist as well, and they also both seem to think I will be switching cancer medications sooner rather than later. I am totally fine with this.
I am also now wearing a Zio heart monitor for the next two weeks. Most of the doctors I have seen seem to think that my low oxygen and breathing issues are causing the erratic heart rate and not the other way around, but at least there will be some more data. This involved a visit to a cardiologist I’d never seen before, about whom I have mixed feelings. She’s obviously very knowledgable, and in the end her plan worked, but it was a problematic interaction. Afterwards I asked Carrie if she felt I was being listened to, and she agreed that I was not. The caridiologist is not American but her approach was my stereotype of American medicine: trusts data over testimony; listens to other doctors, not patients; extremely aggressive in attitudes toward treatment (ie, surgery).
Because the oncologist could not see me in person, she wanted me to convey to the cardiologist to get some oxygen numbers so that the oncologist could order home oxygen for me. This led to a bizarre series of exchanges that escalated quickly:
“I don’t see a message from her in the system.”
I was the messenger.
“We don’t do that kind of testing, that’s pulmonology.” The oncologist knows that, she just needs some numbers since she couldn’t see me in person today. There is literally a pulse oximeter right there on the desk, and I also have one.
I convinced her to do a test, but it is the stupid walking test they do, where my blood oxygen sits at 92. If you have me raise my arms over my head to put on a sweatshirt, or walk up a small incline, or generally change the vertical position of my body, it drops into the 80s. If I lay down, it drops into the 80s and gets harder for me to breathe. I know this because I have been tracking my oxygen multiple times per day with a pulse oximeter. So despite my testimony and request to show her, we return to her office after the walking test and she says she can’t write a prescription for home oxygen. I proceed to put on my sweatshirt over my head, which has the predicted result, and put on my pulse oximeter to show her.
Things escalate quickly from there. She goes out, comes back in, says I need to go to the ER and be admitted to the hospital. The numbers, in case you are curious, are 92 resting and 87 with movement, which were the numbers that got me discharged from Newton-Wellesley hospital in September. She keeps saying “it’s not safe” for me not to be in the hospital without home oxygen, and that “in this country” (meaning the US) going to the ER is how you get things done.
There was then a lot of back and forth and phone calls here and there. The caridologist managed to get me sent down to another office to get the Zio thingy attached (#appnotavailableonCanadianAppStore), which to be fair to her, is some impressive institutional wrangling.
Carrie and I talk it over. I. do. not. fucking. want. to. be. admitted. with no real change to my condition and a weekend coming up, where nothing will happen in the hospital. But we decide to take the chance that going to the ER will expedite the oxygen delivery and head down there around 2pm. We’d arrived at cardiology at 11:30am.
The ER is your typical American urban ER. Lots of down and out people, crowding, not beautiful, prison-like toilet. TVs blaring in the waiting room. The admitting nurse looks at us funny when I say I’m here for oxygen and please ignore all of my other conditions. Reader, they did not ignore the other conditions. I got a full EKG, a chest x-ray, and lots of blood work. For the O2, I got the same stupid walking test, and the person who was administering it to me was not listening to me either. At least the PA overseeing my case admitted to us afterwards that the test is a bullshit racket for insurance.
The X-ray comes back, and it’s not quite the usual “sir, I’m sorry to say you have cancer” mirth but it’s good and cloudy as usual. A blood test comes back with elevated white blood cells. I’m still tapering off steroids, which elevates white blood cell count. But there’s another test that suggests there might be an infection. I explain that I have already been around this block twice. Nevertheless she persisted, and now I have been diagnosed with pneumonia for a third time since September, and have been given a third course of antibiotics.
With just a couple more rounds of antibiotics, I should soon qualify as USDA beef.
We were discharged at 5:30, which is fast for an ER but both of us were pretty crispy by then. On the way out the TV is blaring an ad for Wegovy, and as I trudge by with my cane I hear that I should not take Wegovy if I have thyroid cancer.
This morning, we received a call from a company that’s going to deliver home oxygen this afternoon. So it worked. The cardiologist was basically right.
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In other news, there are too many cooks in the kitchen. I’m concerned that some of my medications (prescribed by many, many doctors) are fighting one another, and worsening symptoms rather than relieving them. Again, I can be very patient with uncertainty but I want symptom relief in the meantime. I came up with a plan, pitched it to my primary care doctor, and she wrote back almost immediately with a couple small tweaks but basic agreement. So lots of changes are about to happen.
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Patient portal news: doctors have staff who filter their messages in the patient portal, so my message doesn’t always reach them because a staff member filters it out. Also, there are currently 15 conversations in my patient portal. 5 are with doctors about real stuff, 10 are about insurance.
America.
So the most important news is that Carrie is here. I wake up several times a night to cough up phlegm in a fairly horrific sounding fashion. It was nice to feel a warm hand on my back as I was trying to hork (<–technical term) something up. And of course the apartment is lit up with her company. A big part of our relationship is constant ridiculous banter, and that’s lovely as a constant rather than something I get in a couple doses during the day. When we decided to live separately this year the mission I took for myself was to see what it was like living independently while chronically ill. Since I got sick with whatever THIS [gestures at own lungs] is, I’ve managed with the help of a lot of friends old and new, but I feel like the point has been made and it will be nice to depend on my spouse for awhile.
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I have lots of doctoring news to report but no conclusive anything. I saw my pulmonologist on Thursday, who took lots of time with me. His latest thing is I am probably not having any kind of asthma attack, so we are going to try diuretics for three days to see if they help my breathing (WILL SUCK but that’s how empiricism works). In the absence of anything conclusive, he suggests that I stay on any meds that make me feel better, and drop any meds that make me feel worse. We are in the phase of “symptom management.” I’m also tapering off steroids which means I should hit rock bottom Tuesday or Wednesday when there are no more pills. That will be some dark night of the soul shit but that’s the deal one makes with prednisone.
Friday I met my new primary care doctor here, who is one of the only PCPs in my plan to also be an osteopath. She suggested wearing a heart monitor just to check if I’m going into afib. The current theory is that my afib in the hospital was related to the breathing, not the other way around, as all evidence suggests my heart is healthy. But it’s always possible they missed something. I have a referral to cardiology for that (she can’t prescribe directly) and I have a referral to speech therapy to work more on my swallowing. But the osteopath part was also great. She laid hands on me, and I felt considerably better after being adjusted. She also gave me a stretching exercise to do which has helped some.
Through the miracle of screenshots and email (and my permission to do it this way), doctors on both sides of the border can now compare stills of my CT scans from August and September. Interpretations are varied. The pulmonologist here says he sees no change in the cancer. Conversely, my oncologist in Montreal, with whom I spoke at length on Friday, is now concerned that the fluid that appeared in my lungs (and their current limited capacity) could represent some kind of progression of disease, though it would not represent a standard progression of disease. On Friday the 11th, I am going to see a local oncologist with expertise in my disease, and she will give her opinion. If they both agree, one option here is to change cancer treatments. If my diminished lung capacity is a result of the cancer somehow, the new drugs theoretically could make me feel better. Though there are some steps between here and there, both decision-wise and then insurance-wise. And there’s not a lot of certainty there either whether this will help my symptoms, which for the moment, is the thing I care most about.
