T-10

Cancer Crawl, 18 Feb 2025

That’s “T minus ten.”

I had my first dose of radiation today. Besides the better mask, they now allow you (encourage even) to crank music in the room while the procedure happens. I chose XTC Black Sea. The room is totally different from the Jewish but not fancier. Just different. I think there may be more radiation rooms, though, as the family waiting area was happening.

Earlier in the day we met with someone from palliative care, who had some ideas on handling my vomiting, which we are currently trying out. For those who don’t know, palliative care is more integrative and often has additional ideas for symptom relief. Maybe I’ll be able to write “more news when it doesn’t happen.”

Infusion, not like tea

14 Feb 2025 Cancer Crawl

So today I woke up before 6am to get down to Mass General for my first infusion. As a bonus, I fell asleep with a stuffed animal next to me and later awoke with Carrie sleeping to my side, so that was awesome. She arrived “late” last night.

I have done far less reading on immunotherapy than other kinds of drugs and options, simply because it’s obviously the best choice for my heart right now, it might help with my lungs as well, and it has the fewest side effects. There’s also exhaustion factor: we turned over the radiation so much at first that I didn’t have a lot of space left for thinking through immunotherapy. So we just went for it.

Side note: I realize there are many opinions on this, but having worked with a lot of different kinds of cancer doctors, I’ve learned that I prefer situations where I can simply trust the doctor or group of doctors. That’s my method for reading reports, for instance, which appear sometimes instantly in the patient portal here, but are best interpreted by someone who is not me. The possibilities for cancer research online are potentially infinite, and my patient group has been great for filling in some of the blanks, but with big treatment decisions, at least in my case, there is something to be said for ceding control.

So, immunotherapy. As I understand it, immunotherapy tries to convince your immune system to attack the cancer but not other things. It can also attack other things, which is why a person on immunotherapy can become immunocompromised or have other issues, like the system attacking the skin or one of the organs. The other thing is that the odds aren’t super high that it will work. It could wind up doing nothing, but the only way to find out is to try it, so that’s what we are doing.

This morning’s appointment involved a meeting with my Boston oncologist, a nurse practitioner, a couple nurses, and a panel of bloods being taken. We asked a lot of questions and learned about the drugs. After all that, I headed up to the 8th floor, which is where they do chemo (“immuno” in my case I guess), and was feeling thankful that I was doing immunotherapy, which only takes about half an hour once you’ve got the IV in and meds ready. It’s just a bag of meds that gets mixed up, and goes in through an IV. So I guess it’s still less like tea and more akin to “makes its own sauce.” Here’s hoping.

Signing one’s brain away

Cancer Crawl 8 Feb 2025

It was an absolutely exhausting week but in the end it’s not so hard. There’s a three page document that lists side effects and likely outcomes, and you sign it, and then they can radiate your brain. And it was so anticlimactic because I’d been around the block twice with the radiation oncologist (his tagline is “you never want to meet me professionally”), talked with two oncologists, and endocrinologist, family members, friends, etc. I’d talked it to death and then on Friday it was time to make the choice and try to kill cancer. And that’s what I did. I had no more questions.

I have an awesome mask that I get to take home with me when I’m done. They are now mesh masks which is a whole different vibe from the semi-plaster mask I wore in 2010 (TW: scary and/or hilarious mask). Very much “moving through a wormhole in the future” rather than “low budget horror film.” You’ll have to trust me for now.

The start of external beam radiation has been delayed to 18 Feb so they can make some adjustments–fine with me, I want them to get it right. It’ll be 10 doses, and I’ll start to feel the side effects sometime around the second five doses. Both times I went in the past — for 30 doses in 2010 and for 5 in 2024 — I did not bring guests except once for Carrie to see how it works. But I’m thinking about it this time, just as a social thing and frankly because this full-time cancer patient thing is a hell of a lot of work and it is wearing me down because having the symptoms is already exhausting.

For instance, this week I had appoints with physical therapy (twice), oncology, neurology, endocrinology, radiation oncology and radiology, and then on top of that I had two short notice meetings with neuropsychology. The first was to get a sense of me and my needs, the second was to run a 75-minute battery of tests including, I think, some of the ones that were administered on Donald Trump (name as many animals as you can that begin with the letter “L”). I don’t have the results yet but I can tell you my visual recall is for shit. You show me shapes, you take them away, I forget shapes. Words and numbers I’m just fine. This confirms my career choices not to become a painter, architect, or mapmaker. Or to try to draw cats. I may or may not be a very stable genius, but I have a baseline to test against in the future if that becomes necessary or useful.

If that’s not enough, I have two other doctors I imagine running around on hamster wheels ordering other tests. There’s no emergency to either but somehow I now have three different CT scans in the same week (because there’s also oncology). I am going to have to try to fix that. Happily, I have no appointments next week other than PT, which I love because it’s (usually) progress.

I know I promised more writing on the heart and it will probably have to come at some point. I don’t have much to offer at the moment besides the fact that there is a(n off-label) treatment plan that may or may not work, that treatment plan features a drug which involved old people on TV baking misshapen bread while a litany of side effects is read out, and I’ve never been on a drug that’s been advertised before. The plan has been approved, it involved infusions, and when I start doing it, I suppose I will want to write something about infusions as they are new to me. Unless we are talking about tea, which we are not.

That damn blood/brain barrier

Cancer Crawl 5 Feb 2025

Erratum: there was a 4th option I failed to mention on Thursday which is a sort of radiotherapy whack-a-mole where they radiate lesions as they start to cause symptoms. We’re not considering this one (for one thing, that’s a potentially infinite number of radiation treatments) so I’m not saying much more.

—

So, we are 99% sure I’m going with whole brain radiation. Just waiting for one bit of confirmation. Everyone says it’s my choice — ie, “I” am choosing it. But of course it’s not that simple when there are people close to you and medical experts weighing in.

When I last wrote, I was only a few hours from getting the news about the mets in my brain. There were conversations to have with medical professionals and family, and I needed time to think it through. This is not my first brush with cancer and the possibility of life-altering side-effects–I almost wound up losing my voice in 2009–but things feel different now than they have in the past. The cancer is more aggressive, and while I am usually a “bet on yourself” kind of person, I would say that December 2023-present has not been a very “lucky” period for my health between the concussion, the two hospitalizations for the cancer in my lungs this fall, and now this. I am still going to bet on myself, but cancer has a hand to play as well.

After some reflection, the options are more straightforward than they were initially. I do not have “get out of jail free” card: there are only choices that come with side effects and a potential for a decreased quality of life. The advantage of whole brain radiation is that it attacks all the mets. It is also the best bet for the shorter and longer term. The MRI report from last week mentions 17 mets. Some are new, and the older ones have doubled in size in the space of 6 weeks. The radiation would attack all of them including ones we don’t know about. And it would happen fast: better to get the tumour before more symptoms or bleeding shows up. (Bleeding with effects on me would mean brain surgery.)

Still, whole brain radiation is the first of a different class of cancer treatment I will have had. Up to this point everything I have had done has been specific and targeted. Modern treatments aimed at specific mutations, surgeries aimed at specific tumours or lesions, etc. Whole brain radiation is more, well, medieval. (There is probably a better word, but it’s my placeholder for “the cure is also the poison.”) Like old fashioned chemo, it aims at the whole organ or area. In attacking the cancer, it attacks the whole organ.

Part of this is because research hasn’t found any better options, at least not yet. Part of this is the blood-brain barrier. Presumably the cancer in my brain is the same mutation as the cancer in my lungs, but the drugs that are helping my lungs can’t get to my brain. So you attack the whole brain.

When you attack your whole brain with radiation, there is a good deal of potential for side effects down the road. Most of these surface months or even years after the treatment but they can be serious. Most of them sound like the accelerated effects of aging: slower recall, reduced verbal memory, hearing loss, cataracts, possible balance issues, emotional self-regulation, and on and on. I asked about musical memory (which is often the last to go) and of course there’s no research on that because this is a rare form of cancer and medical researchers don’t care about music (I KID but only a little). As a 54-year old in decent health otherwise my odds are good that the effects will be milder. But as with all side-effects, it’s a menu, you don’t get all of them, it’s chef’s choice what you do get and there’s no ordering off the menu. As an intellectual, I may also be more sensitive to changes in my cognition. I will say that everyone I’ve told this to in my age range immediate regales me with a story of a word they’ve forgotten, so if nothing else I get to mask it with middle age.

In the short term, side effects will be like other radiation treatments, which I’m used to. This is my third dance with external beam radiation. One small difference is my hair will fall out, but a little extra baldness for a few weeks won’t bother me. The fatigue doesn’t come on right away but it can be brutal; at least I’m off the lung meds while undergoing treatment so I have a chance at managing it. I’m guessing 2-3 weeks of fatigue. Carrie will be here to look after me. I might also have nausea and headaches. I’ve got drugs for that. Fatigue just takes sleep and time.

Friday I go in to sign a bunch of forms and get fitted for a mask, and have a practice run with the radiotherapy setup.

—

Unfortunately, this is not the end of this post. I have another announcement. Yesterday I went to see my Boston medical oncologist and learned that the cancer in my lungs has spread to my heart tissue. The treatment for that is an immunotherapy drug called Keytruda that’s taken in combination with dabrafenib and trametenib. The whole thing was a real surprise as I walked into the appointment thinking my brain was my problem and that the lungs were under control. As it turns out, you really have to read the report carefully to notice the word “aorta” as the word “heart” or “spread” never appears. Strike one point for medical jargon. We are waiting for the insurance company’s approval of the immunotherapy drug. I will write more about it in the coming days or week. This post is long enough.

Fuck cancer!

Bad news / good news

Cancer Crawl, 31 Jan 2025

The tests have all come back, so I have news. Strap in because it’s a bumpy ride.

Bad news: the mets in my brain have grown, and there is one spot where there is some bleeding. I am probably not symptomatic apart from twice getting a numb tongue for 10 minutes. Carrie and I spent an hour on a video call with the radiation oncologist here, who is great. There are really three options all of which are “bad” options in that they all contain risks. If I do nothing, he estimates I’ll start seeing side effects in two months, at which point we could do targeted radiation as a sort of palliative strategy. A second option that I am not at all keen on is using medical treatments to treat symptoms but doing nothing about the cancer itself. The third option is whole brain radiation, maybe minus the hippocampus. This comes with a lot of potential side effects but good chance of extension of life, and my odds in side-effects roulette are slightly better because I’m 54. At the moment we are leaning towards option 3, but that depends on discussions that will happen this weekend and next week. There is a lot more detail I can add about whole brain radiation and its various risks, but for now I’ll leave it at this: not radiating is at least as risky as radiating as far as I can tell.

The good news is that my lung mets continue to react to the meds I’ve been taking. So at least that is working (which is also why we are leaning towards the whole brain option).

Tuesday I see my medical oncologist, and the radiation oncologist is going back to the tumour board. We might make a move as soon as late next week. If I do choose the whole brain radiation, I can do a full half-day neurological panel of tests to set a baseline, which is something I would definitely want to do.

Symptom and side effect report:

Sleep’s been decent, all things considered. I got two vaccines Tuesday eve that caused some fever spikes alone or in tandem with the cancer meds. I was able to handle it and the second spike came with chills so I used “the boyfriend” to warm up my core, which worked like a charm. I hesitate to write this for reasons that will be clear at the end of the sentence: I last vomited Friday evening.

Housekeeping:

“Cancer Crawl” used to be a sub-feature of the blog (like a news crawl), but it’s more or less what I’m writing about these days. I’ve taken it out of the title because it’s ugly and takes up lots of space. So future posts will look like this. You can always find my 15+ years of cancer posts by hitting the “cancer” category.

24 Jan 2025 Cancer Crawl: Pause or Shift?

This will be another symptoms and side effects post. I really want to write about shrinkage and some other more philosophical topics but that has to wait.

The good news is that there is good news to share. Let’s go!

Good news: sleep. I put the 15 degree foam wedge on top of the 25 degree foam wedge on my side of the bed and it works. 40 degrees is apparently enough to keep the liquids in my lungs down, and I wake up once or twice to cough and then get back to sleep. I don’t even have to put on music. This week, I’ve had some of the best sleep I’ve had in weeks, and I haven’t needed the recliner, though it’s there and ready if I do. Of course I still wake up zonked, and I’m still dealing with a lot of fatigue, but I feel less like shit than I have been when I wake up in the morning, which matters.

Good news: blood from lungs and breathing. This may also have to do with meds: maybe the albuterol is clearing things up now that it’s built up. And I was on steroids Friday-Tuesday, which dry me out, which could have also helped, and might still be in my system. I don’t know if I’m enjoying a respite or a change. I am still coughing up bloody phlegm but at a more manageable rate, and my airway is clear a lot more of the time.

Good news: fevers. The 5-day course of ‘roids seems to have helped. My fever is not spiking, and I’ve been back on my meds since Wednesday. Again, it may be too soon to tell if this is a switch or a respite, but it’s something.

Good news: physical therapy. Wednesday I had my intake for outpatient physical therapy. I don’t think I realized how much I missed PT. (I had in-home through December, but could not get an appointment until Weds for outpatient). It’s one of the few things where I can do something and experience improvement over time–in other words, it’s one of the few places in my current treatment where I can exert some control.

Semi-good news: vomiting. The day isn’t over yet, but I haven’t puked since Monday. Friday and Monday were pretty spectacular, but I learned that steroids can also upset the stomach. I made a slight change in how I take the “with food” breakfast meds, which may help in the future.

Was this all just steroids? I guess we will know next week when they have totally worn off.

This morning I had a barium swallow, results still pending. I know I have issues in my pharynx (I believe I have discussed those already). And on Tuesday I saw an ENT physicians’ assistant. She examined my nose and throat, and said the throat was in surprisingly good condition given how much I have been throwing up. Her theory is that it’s either a sphincter not closing or acid reflux or both that are accentuating the vomiting (which, it must be remembered, was not an issue before going on the new meds in October). She suggested sipping Maalox during vomiting episodes to tame the burning acid.

Next week: scans on Tuesday afternoon, then a meeting with my primary care doctor, who is fantastic. Thursday a virtual meeting with my radiation oncologist, who might even have readings of all my scans (though it’s hard to know in advance). Also I’ve got two physical therapy appointments M and Th, and Friday my cancer therapist will be back and I am definitely due to talk with her! So yeah, definitely being sick is somewhere between my hustle and side-hustle.

In other news, a friend sent me a watercolour painting of my cats, which is the gift I didn’t know I needed. It prompted me to order a digital picture frame. I have pics of Carrie and the cats on various devices but it’s nice to have them visible in a room. I’m not sure if this is just lack of practice at living alone or some residual bachelor/dude behaviour on my part, but I should have had the picture frame from September. I’ll still get lots of use out of it. Carrie is also very good at sending cat audio and video (and photos of beaches and ocean) so that’s been very nice.

20 Jan 2025 Cancer Crawl: Works in Progress

It’s been a week so here is a check-in.

Things have been pretty rough on the symptom/side-effect front. I did have friends in town this weekend and got to see them a couple times, which was very nice.

I’ve been coughing up lots of blood and/or bloody phlegm (a known side effect of several of the drugs I’m on), and had a lot of congestion in my chest and throat. On Thursday’s visit to the cancer center, my nurse practitioner listened to my lungs and said the congestion was probably in the upper chest, not lungs, which was confirmed by an x-ray. I’m now nebulizing albuterol 2-4 times a day, which seems to be helping. I’m also pausing baby aspirin and trying to avoid Advil, which I’d been using to (unsuccessfully) help manage fevers. The NP asked me “who prescribed baby aspirin?” and I had to answer “you did.” I think it was as a precaution to prevent a stroke from afib? I’m on metropolol and may or may not have afib at this point–my heart rate feels relatively well controlled.

It is really hard to keep track of all the drugs and their interactions. I keep a list that I edit as needed. This week I’m pausing montelukast, an asthma med that I may not need with the albuterol, and which lists “difficulty swallowing” among its side effects, to see if I feel any different. I feel like there’s just a lot of body experimentation to do–trial and error to see what works, because what worked before is no longer a good guide. Speaking of which….

The cough has also been messing with my sleep. I’d wake up around 3am and cough terribly for an hour or two. It’s simple gravity: if there’s a bunch of crap in my lungs and I’m laying down, it’s going to creep up on me. Eventually–I can’t say exactly when–I started going out to the recliner in the living room for the last few hours of sleep. The last two nights I’ve experimented just sleeping in the recliner. 3 hours vs 9-10 is a whole different proposition for my body — it’s not a new recliner and doesn’t have amazing back support and I had to figure out how to position my neck. But after two nights of experimentation, it’s an option if it’s needed. Starting tonight, I am going to try the bed again, this time with two foam wedges (one 15 degrees, one 25, for 40 degrees total) and have blankets and pillow ready to go in the living room if I need to crawl out to the recliner in the middle of the night. We will see how this goes. Sleeping in a recliner feels like “giving up” to me in some way. I’m sure people with COPD or other respiratory ailments do it all the time, but I really love the bed (I have a rare rental with a Very Comfortable Bed) and don’t want to give it up.

After fighting a losing battle with fever last week, I went into the “prednisone protocol” on Friday, which involves stopping the cancer drugs for five days and taking — you guessed it — prednisone. Friday I noticed no improvement but I might have puked it out in the morning. Hard to tell. But this weekend I definitely feel like I’m on steroids, and as of yesterday, my temperatures were back in the normal range. Wednesday morning I go back on my cancer meds.

Friday I had my spinal scan. Hoping that turns up no new news. My remaining scans (CT chest, MRI brain) are a week from Tuesday.

This Tuesday I see an ENT physician’s assistant, which will be for my swallowing / throat burning / vomiting issues. We will see what they come up with, if anything. I realize my problem is that my condition transcends specialties — it’s probably a mix of throat issues, stomach issues, and cancer meds.

There’s a post to be made about being “in my body” and self-experimentation, but I’m not there yet. In the meantime, wish me luck-: with scans, sleeping, fevers, blood/phlegm, and balancing meds. More news as it happens, or in a few days’ time.