- Yesterday as the car was coming to pick us up to go to Mass General, I simply grabbed my 10# oxygen tank, walked down the stairs, and out the front door. It was only later that I noticed that I was not out of breath. Carrie caught it right away though.
- I successfully unloaded the dishwasher on Monday morning, with the help of a grabber tool from the OT.
- I have new PT exercises that are more directly related to muscle strength for walking.
- I left the apartment twice yesterday, once for medical appointments in the afternoon, and once in the evening for a reading and party at Radcliffe. So I scaled the apartment stairs twice — once for each return. Following my PT’s advice I stop twice on the way up instead of once. Makes it way easier.
- (I did take a late afternoon disco nap to make it through the evening outing — the fatigue is still a real thing.)
- At the appointment yesterday, the nurse practitioner said I “looked better”. My blood numbers for nutrition (I am only eating real food now) were also better. I am still somehow losing weight. Side effects are still there but mostly under control.
- I feel like every medical question is answered with a referral to another medical professional and more appointments. I don’t really want more appointments, except for intellectual and social appointments.
- We met with a social worker who will give me some options should I need to hire people for help with independent living in January, assuming things continue to progress. They also have a peer mentor program I’m going to check out.
- I ate a tiny bit of normal pizza last night. It was divine. I do have a few gas pains this AM. Cheese.
- The roller for the oxygen tank works well and the longer tubing solves the “gentle leader” problems.
- I am still getting the hang of socializing in group settings where people are standing and walking around and I mostly need to be sitting.
Cancer Crawl 16 Nov 2024: A Union, Going Out, Staying In, Etc.
We’ll start with the big news: McGill’s Arts Professors Union (AMPFA) are now officially certified as a bargaining unit. A little over a year after our first signed card, we have a union! I’m not naive about what will be involved in the bargaining process, but given admin’s systematic turn to “consultation” and the dysfunction of faculty senate, this is a major step forward for faculty governance and protecting our working conditions. I served as interim treasurer during the runup to unionization, but will not be running for office during the first election, since I have to look after myself right now. And I’m on sabbatical.
Onto personal good news: this week I left the apartment TWICE for non-medical and non-exercise purposes. Wednesday night one of the Radcliffe fellows organized what can only be called an “emergency karaoke.” And Carrie loves karaoke. So we got it together and went out. The bar was crushingly loud and I may be nearing the “too old for this shit” phase of my life for that. But I brought my speech amp which helped me out on the speaking end. It was a lot of fun, and it was wonderful to see people, and there were plenty of memorable performances. And no, while on oxygen, I will not be singing for anyone. (It costs spoons just to talk.) There are still things to work out. At one point most of the group moved over to a table where everyone was standing, which involved me getting a stool over there so I could join up, but that’s pretty standard disability stuff.
Yesterday (Friday), we went into Radcliffe for the afternoon. I was there for almost 4 hours. It was great to be in my office, which is a beautiful space. With Carrie’s help, I also set up the synthesizers/artist bait that I had packed up in September. So the office almost done now. But also, it was frozen in amber from September: on the whiteboard I had various work plans up for the “next few weeks”–which turned out to be the weeks I spent in and out of hospital. Papers piled on my desk included written comments on a draft of the grant application Carrie sent in at the beginning of October. The office itself is wonderful though, and I got lucky with placement. I am right next door to the accessible bathroom. Down the hall from the kitchen. And near a nice lounge area where people run into one another. The highlight of the day was definitely running into people and chatting, and at one point there was a group of six of us in the lounge talking away and it felt like one of those promotional photos for sabbatical fellowships. I left late afternoon feeling quite tired, though made it up the stairs (my PT said to break it up into smaller chunks, which helps) and I slept like a rock last night.
I still have some things to figure out before going in will be a regular thing. The tubing I had on my portable oxygen tank yesterday was comically juuuuuust too short for rolling it around, so I need to use a longer tube on my pulsed regulator. I need to figure out what I will do for lunches, as going out isn’t an option, and neither will be most of their catered food, since I am still being very careful about what I try to swallow. (There are still errors. Last night a “new, smaller!” Mucinex gel capsule got stuck.) And I probably need to figure out a few other access-related things to make my office life simpler. I will also enjoy it more when my walking / breathing stamina is a bit higher than it is now. I had to decline an artist’s studio tour because I needed to rest, but at least I’m aware enough of my own needs to look after them (<–not a skill I’m normally very good at).
I spoke with my Montreal oncologist yesterday evening, who said I “sound good.” Carrie said I am seeming perkier as well. Fingers crossed that that continues. The only new side effect this week is more blood in the phlegm I cough up. Today it seems to be subsiding though, and as a symptom it’s ebbed and flowed for the last six weeks, so I am not particularly worried about it. I sent a photo via patient portal to the nurse practitioner at the cancer center here, and didn’t hear back, which to me says this is not an urgent concern, just an aesthetic one.
Also in the good news department: some friends are loaning us an Instant Pot to try out (this came up on the Facebook thread after I mentioned cooking in a previous post). People have been great about loaning us stuff, and I’ll remember this as a thing to do for sick friends in the future. We’ve got a couple air purifiers, one of those forehead thermometers, a blender, and a couple other things this way. One of the nice features of middle class middle age is people have too much stuff. We do too. Better to share!
Lastly, as part of going back to a schedule that approximates what we had in mind for sabbatical, I am taking at least one day a week as sabbath, which means resting, not seeing people, not pushing myself in any way, and not doing any work. Though things like cooking and puttering are allowed if they are pleasurable. I did that last Sunday and I think it’s a big part of why, overall, I had a good week (minus a few bumps here and there, like a cyclical vomiting episode Tuesday night–still figuring those out). Even when not in treatment for an aggressive cancer terrorizing my lungs, I’ve found I function better the rest of the time with a full day of retreat.
Tuesday I go into Mass General to see the nurse practitioner, get bloods done, and see the social worker, then go home to nap before a party at Radcliffe. So barring unforeseen adventures, I should have more news midweek next week.
Cancer Crawl: 14 November: The Gear Post
I hate Martin Heidegger but the one quote of his that I allow myself is as follows: “there is no such thing as an equipment”. (from Being and Time).
It’s 21st century America. Cancer = consumerism. Time for some product reviews.
Soundcore Sleep A20 Earbuds
Beyond Carrie, actual treatment, and friends, I think these earbuds might be the most important element for my morale since September. Music has been my solace. I’ve been wearing out some ambient/electronic albums at night for falling asleep to. Since I usually have to fall asleep about 3 different times a night I switch it up but stick with the familiar, as it helps lull me to sleep. I may well burn all of these records out–I can’t listen to anything I regularly listened to when hospitalized in 2010–but it’s worth it for the comfort now. My advance apologies to Alessandro Cortini, Abul Mogard, and a few others.
As you may have heard, recorded music needs a delivery system (didn’t someone I know write a couple books about that?). The A20s are “sleep earbuds” which means they have longer battery life and are flat with my ears, which would matter if I could sleep on my side for any amount of time. They also function as earplugs. There are more expensive ones made by people who left Bose, but those come with a bullshit app and appear to still be in shitty kickstarter product mode. These actually work with just a couple small glitches that are easily fixed.* They also have a stupid app but I mostly ignore it and just run them in bluetooth mode. Sound quality is acceptable. The one from the Bose people might be better but it’s way more expensive and buggy.
* If one of the earbuds stops working, put them both back in the case, close it, forget the bluetooth device, and reconnect. Problem solved. Unless you put it in the case wrong and it didn’t charge. Then charge it.
Obviously you need a smartphone or a tablet to go with these, and I will say the iPhone and iPad I had with me at the hospital were also indispensable and made the experience a lot better than 2010. Also the free wi-fi and the New and Improved hospital beds that MGH bought a few years back. But back to the A20s….
They are also damn fine earplugs, which is really useful when you live at a noisy intersection (our landlord warned us that we would want earplugs to sleep before we rented the place), or are trying to sleep in a hospital.
Speaking of trying to sleep in a hospital:
Nite Hood
It’s a hood that goes over my face. It makes things dark. It’s soft. There’s one version now that’s both warm and cool but I also have an older one that’s a little thicker and warmer. Combined with the earplug function of the A20s, and regular doses of dilaudid, I slept like a log in the hospital. Nurses and Personal Care Assistants regularly had to shake me to wake me up. At least one nurse is buying one herself since they get alternated between day and night shifts and day sleeping is a challenge for her. As I said in an earlier post, people don’t usually go to the hospital to sleep, but my sleep was so bad before my second hospitalization that it was a revelation.
This thing is WAY better than sleep masks. Like night and day better. That’s my opinion, man. Canadian company.
Kölbs Bed Wedge Pillow (I am brand agnostic on this–it’s just a memory foam triangle, pick your preferred angle and size)
My lungs are borked. I cannot sleep lying flat. I wish someone told me about these things before I was hospitalized the second time. I might have gotten some sleep rather than slowly lost my mind. It did mean ditching my favourite pillow, because it raises my head up too much, but these things are comfortable and really do help. One night it wasn’t enough and I came out and slept on the recliner, which has an even sharper angle. But I prefer the bed for all sorts of reasons.
Drive DeVilbiss Oxygen Concentrator with optional attachment to refill portable canisters and more tubing than you can shake a stick at
Jesus fuck this thing is huge and loud. File under “disabled people have ambivalent relationships with their prostheses.” Do I like having a machine that makes oxygen and then sends it up my nose at home? Yes, my poor lungs need it! Do I like being tethered to a hulking, hissing, clicking monster by a(n often tangled) thin green filament connected to my head like a leash? Well, I can walk around the apartment so long as I don’t trip over it, so there’s that. But it has “devil” in its actual name. Despite its size and loudness, I will say the interface is very straightforward. It does what it says it does consistently and well as far as I can tell.
We just moved it from the living room to the second bedroom and it’s much quieter in the apartment now, but it probably means we can’t have guests staying here. Also I’ll have to turn it off to make any music in there, though then I’ll use the. . .
Easy Pulse Oxygen Regulator
Does what it says on the tin: delivers little pulses of oxygen as I breathe in. That makes a cylinder of oxygen last a lot longer than if I have it putting out oxygen continuously. It’s a skill to use these things and they make a little “puff” every time I breathe in, which I suppose people around me are going to have to get used to. Sort of sounds like a cat sneezing. (I miss my cats!) But I am getting used to using it, and I think a few more social and involving activities like music making will have me reasonably well bonded with it. Truth be told I am more confident with the continuous oxygen going up my nose. So also file this one under “prosthetic ambivalence.” It can’t put out as much oxygen as a continuous regulator, so I have to be extra careful on stairs or exerting myself but I’m getting there with it.
Cool grabby tools the occupational therapist gave me
Bending over is tough. But I’ve got this stick with pincers on the end to grab things, like popsicles out of the bottom freezer drawer. Awesome. They also gave me a stick with different kinds of hooks on each end. Good for picking up laundry off the floor.
Drive Shower Bench with optional chair back (not installed)
In the past, I very occasionally sat down to take a shower at home. It was a real treat. Now it’s more of a necessity. I can shower standing up but it costs too many spoons to be worthwhile (the OT was big on “energy conservation”). A bench makes it easy and fun, and I’ve managed to take fast and slow showers, as time and mood dictate. There’s an optional seat back you can attach, but the bench allows me to vary my position which is nice, so we left off the chair back. Of course, the ideal shower head for this setup has a detachable nozzle, so the water can go where I want it to, which the shower in our rental happens to have.
I’ve also separated showering and shaving: I now shave at the kitchen counter with a mirror and bowl of hot water, at a completely different time than when I shower–I used to shave right after showering. I think it’s yielding better shaves than standing in front of the bathroom mirror for all those year. Go figure. Maybe I no longer can say that I have the shaving skills of a 14-year-old (I started shaving again at age 40).
Emesis Bags (again, brand agnostic–mine is charmingly branded “Pukebag”)
We became acquainted with these in the hospital. They, um, receive emissions that may come out of the mouth. Of course you can buy them in bulk on Amazon (yes, I hate Jeff Bezos too but sometimes one must sacrifice one’s political commitments just to get by). Apparently they’re also used by taxi drivers. I’ve got them all over the apartment, ready to receive whatever emissions my lungs or esophagus cook up. The opening reminds me of the horned mouth of an acoustic phonograph. Or some kind of weird sea life. A mouth for my mouth. Too bad I don’t believe in psychoanalytic theory. Jacques Lacan would have a field day with that.
I am going to resist the urge to review my meds, technological they may well be. I may change my mind when I get scan results on Dec 17th. Ok, one quick review: I am one of the 5% of people who hallucinate if you give me enough IV dilaudid. That didn’t happen this time at the hospital, but it was nice and dreamy.
Cancer Crawl: 12 Nov 2024: Independence Goals, The Patient Vortex, Christmas in Cambridge
First, the bad news. On Friday I spoke with my Montreal oncologist who told me in no uncertain terms that I am not spending Christmas in California. His exact words were “you are still in a precarious state.” This bites for several reasons. California is warmer than Cambridge. Our cats are there, whom I miss dearly at this point. And it also means Carrie isn’t spending Christmas in California and is stuck here with me. We were both really bummed to hear it. I was feeling like a zoo animal: my territory restricted and my instincts totally inadequate to my situation. But a few days later, I am now feeling like it at least gives some clarity to things and I can plan in the short term, which is not nothing. It gives me a timeframe and goals. My goal is to be as independent as possible come January so that maybe, just maybe, Carrie can go “home” to California and I can resume some semblance of a life as a Radcliffe fellow. That may require more assistive technology, hiring help, or leaning on friends, but I have no problem with any of those things.
—
Yesterday we took a ride out to the suburbs to see an ophthalmologist. Among the side effects I’d noticed last weekend when everything was going to hell with the meds was blurred vision. They ran me through a battery of tests, and the ophthalmologist pronounced my eyes “the healthiest he’d seen all day.” He gave me over the counter eyedrops and told me my chemo drugs can really dry out the eyes, so “use them with impunity.” I left relieved, but also wondering if they couldn’t have just said “try eyedrops and see if that helps” at the MGH cancer center before I blew an afternoon.
And therein lies the dilemma of the patient: once you are in the system, you are in the system. Every query could result in a referral to a specialist, who might be helpful, might find nothing wrong with me, who might prescribe something that may or may not work with other meds, or who might send me to another specialist. It’s a lot of labor to manage, and it sucks time away from other things. I’m now pondering whether to follow up on nosebleeds or swallowing next (the answer is nosebleeds).
And now here is the good news: outside the specialist / referral / endless doctor appointment spectrum, I am fairly stable. Most days I’m pretty tired, which is likely fatigue from the cancer meds. Between sleeping and trying to get back to sleep, I’m in bed about 10-11 hours a day. I have medication to aid with digestion, a regimen that seems to be keeping the fever and chills at bay, and no other side effects seem to be rearing their heads. Though I remember from Lenvima that things might show up over the next few months. I’m ready. A few side effects from Lenvima also seem to be subsiding, but I don’t want to jinx them by telling you which ones.
I continue to do my physical therapy exercises religiously. Today he gave me some new ones which are quite taxing, but that’s the whole point. They get less taxing as I do them every day. I asked at what point I might start to see real progress walking stairs, or walking sidewalks outside, where I feel hopelessly stuck on a plateau. He said 2-6 weeks, barring medical setbacks (like fluid showing up in my lungs or something other right turn I don’t want).
This morning I made a list of things I need to be able to do to be independent domestically to the point that Carrie could go back to California. The other option is to hire someone to come in or to depend on friends and a spreadsheet:
Independence Goals:
Domestic:
Unload dishwasher
Do laundry start to finish
Fill oxygen tanks
Make bed
Find a way to get groceries and necessities actually into apt
Take out trash
Cook something on the stovePhysical:
Multiple stairs trips a day
Walk to Central Square businesses and buy something and bring it homeOut:
Radcliffe! Go in, come home, bring lunch, bring oxygen
Each goal is more complicated than it seems. For instance: to shower by myself involved getting a shower bench (this goal has already been achieved and so is no longer on the list). I still have trouble bending over without the room spinning which is why I’m not doing laundry or emptying the dishwasher. Or cooking: I sous-chefed Sunday’s minestrone for the week, and there were a lot of veggies to chop, but I would need to puchase a pair of induction hobs to cook on the stove. The gas stove that made this apartment so appealing is less so when it could set fire to my face in the course of boiling water for pasta or making a stir-fry. Hazards of the oxygen going in up my nose. Also, I probably need to figure out how to cook while seated: I’m not sure I could stand up long enough to pull it off right now. I can probably get to Radcliffe, but there’s spending the day masked at events, managing my cough (which could easily disrupt a public talk right now), and reserving enough energy to get home and back up the stairs without keeling over.
In the unmitigated good news department, we are shifting our lives a little bit. While in the hospital and since coming home we’ve had visitors come by a lot, often weekday afternoons. But now that I’m a bit stronger, we both want to work, so we are shifting to visitors on evenings or weekends, and less visitors, so that we can start to behave like academics again, at least a little bit. In my case that also means proper rest, so I had to decline visitors on Sunday so I could nap a lot and watch a bit of football (and help make minestrone).
Carrie is knee deep in the history of urine testing. I just caught up on my backlog of recommendation letters (more are coming–all my prof friends know this is a hollow victory but I’ll take it). I am inching along on a Radcliffe-funded research project, and reading a bit. I’m also starting to try to reply to the massive pile of messages I got while down and out of it in October, which will take awhile. Eventually, maybe I’ll even write something that’s not this blog. But I’m not pushing it. Zoom still kills me so I am going easy on online meetings for now. One foot in front of the other.
7 Nov 2024: Cancer Crawl and U.S. Election
I’m pleased to have no doctors’ appointments and no new side effects to report since my last post. It turns out I do not have an infection, and I am back on dabrafenib and trametinib as of yesterday. Tuesday night we went to an election watching party. You all know how that turned out, but it was a big deal for me, because we were out for almost 5 hours, and I had more than enough portable oxygen to make it through the event and back home. I mean, I was exhausted because I was also awake much later than usual, and that bled into yesterday, but I’ll call that the one good thing to come out of election night.
The other big events of the week in cancer land so far have been a) discovering that the “block” I’ve been walking is actually two blocks according to someone who used to live here, b) taking a really proper shower on my own now that we have a shower bench (thank you Carrie), c) discovering more things I can eat (hello takeout Thai) and d) some progress in physical therapy. In terms of just moving and doing basic stuff, I still have so far to go and I am still so impatient about my conditioning, but I have to remember that in the space of a few weeks in September, my lungs suffered pretty profound damage. And I do not know–and possibly nobody else knows at this point–what that will ultimately mean, what recovery is possible or what the timeline will look like. So I just have to stretch my limits slowly and work within the parameters I am given. Patience is the hardest part.
More news as it happens.
—
There is going to be a lot of analysis of how the democrats lost the election on Tuesday, and I am not sure I have much to add that won’t be said better elsewhere. But one thing sticks in my mind, so I share it here.
The entire mainstream U.S. technocracy rallied around the Harris campaign and democratic party, and the majority of US voters said “no thank you, we’ll try the fascist agenda again.” Take it from someone with swallowing problems: that’s a tough pill to swallow, but it’s also quite an indicator of how much the technocracy has been failing people–and failing to persuade people–for some time.
5 Nov 2024: A Visit to the Mothership
Yesterday was our first trip back to Mass General since my hospitalization. The place is truly massive. My oncologist here calls it The Mothership and that truly makes sense. I had to be wheeled around in a wheelchair because it would have been impossible for me to walk in my current condition.
The first stop was Interventional Pulmonary, to look over my PleurX site, which was looking rather unhappy on Friday. It healed up quite a bit over the weekend, but the big surprise is that they suggested taking it out because I was getting so little drainage. This is fantastic news, since every time I was getting drained, I had to take an opiate, which would fry me for the day. So one more opiate, one more drainage, and the PleurX is out! It is entirely possible that pleural effusions could come back at some other point in my treatment, but it’s best not to leave stuff directly plugged into the interior of your lungs if you’re not using it.
One other thing: one of the interventional pulmonologists walked us through a CT scan of my lungs from when I was hospitalized, and I could finally really see and understand how the cancer cells look different. They’re sort of networked. It may well be that they’re the cause of reduced lung capacity, even though the old papillary ones didn’t cause breathing problems. I have no idea what that means long term for recovery of lung function. One foot in front of the other.
The second stop was the head and neck cancer center, which was my first physical visit there. As you’d expect, the cancer center is always one of the nicest parts of the hospital–just like in Montreal. The experience is different from Montreal, though. My doctor here is a rockstar, and has a team of people working with her, which means I saw a nurse practitioner today. We had stopped my cancer meds on Sunday because Tylenol was no longer working for the fever. Unfortunately for me, before they conclude the chemo is causing the fever, they have to rule out lung infections and so I had another x-ray, looked at by another person who’s never seen my lungs before, and now I’m on yet another course of antibiotics. If there is no evidence of fever off the chemo by Weds, I start it up again, taking Tylenol half an hour before or after each dose. If that doesn’t work, I think the next line of defence to keep me on the chemo drugs but without fevers is steroids.
Carrie and I talked about dividing my days into sections, so rather than thinking of “good days” and “bad days” it’s really segments.
When I got home, I felt like walking a bit before going back upstairs and did a full block and back, which has been a goal for awhile. Achievement unlocked. I went upstairs (taking breaks) and then rested.
An hour later I was in the middle of another cyclical vomiting episode. The first one in awhile. I am still unsure of how to track what triggers them in specific. I tried the under-the-tongue dissolvable ondansetron and it did slow things down but not stop them completely. Half an Ativan finally shut it down. So next time I’ll go in first with Ativan. Then I took my temperature. 102.5. A-ha! I probably couldn’t digest the liquid I was drinking and maybe that’s what started it? So a round of Tylenol and Advil followed. I hate being this far inside my own body this much of the time but it’s not really optional.
A couple hours after that I was happily watching TV with Carrie, and I even got hungry, ate something real (lentil stew), and kept it down. Eventually I fell asleep in front of the TV and went to bed.
So yeah, sections.
Cancer Crawl–3 Nov 2024
Since my last post, I’d say I’m living in a split reality. Every day there’s a little progress or something fun, but also every day some new fucking thing as the new chemo works its way through my body. When starting on lenvima I had a rule that a side effect wasn’t real if it didn’t last a week. I still have the rule but things are a little different because I am starting out on the maximum dose of dabrafebib and trametenib, rather than ramping up from a lower dose, as I did with lenvantinib. I know I’ve complained about over-aggressive American medicine in previous posts but in this case, I’ll take it. When I went on, I was sicker than I’d ever been in my life, by far. And I am still more beaten down, at least in terms of what my lungs can do, than at any other point in my life. And lungs are IMPORTANT for a lot of things.
I’m also still learning how to live my life while attached to supplemental oxygen. I’m hoping that part isn’t permanent, but if it’s temporary it could still last weeks or months, so I might do it as well as possible while I’m on it.
And I’m still learning how to work with/around my limited swallowing.
On the plus side of the leger:
Thanks to a foam wedge and some angling, a less productive cough and codeine cough syrup, I am now mostly sleeping through the night except for whatever interruptions occur (see below).
Yesterday we took an Uber to the suburbs for a scheduled meeting to get tested to see if I could use a pulsed oxygen regulator. Normally, an oxygen tank just delivers a constant flow of oxygen whether you’re breathing it in or not. A pulsed regulator is triggered by your breathing, which makes a portable tank last a LOT longer. The good news is I passed the test and took well to it yesterday, which bodes well for socializing outside the apartment, and eventually going into work when my physical endurance is up and my side effects are a bit more under control. I even cranked it up and walked up stairs with it when we got back to the apartment and it seemed ok.
(The trip was a bit of an adventure — we’d gotten two confirmation calls on Friday for the appointment. Carrie likes to be early, so we’re there at 9:30 for a 10am appointment and it’s a totally deserted office park in the middle of the suburbs. The place is closed and locked. So is everywhere else. No place to wait or sit, Uber driver is long gone. We sat a shivered on some concrete stairs as the wind cut through us. I swear I hallucinated tumbleweed. Finally, at about 10:05 a woman responds to Carrie’s plaintive knocking and is very cranky with her. Turns out the appointment wasn’t conveyed to the shop. She changed her vibe and was very helpful to both of us, we got everything we needed, it was all good.)
We ordered pizza yesterday for lunch and I ate two pieces of pizza, minus edge crusts, which are still a little too hard to break down into swallowable form–you can guess how I figured that out.
The PT exercises are working. It’s considerably easier for me to stand up than it was a week ago. I still get winded doing the most random things and in general move very slowly, but I’ll take any sign of progress right now.
Side effect improvement: no cyclical vomiting since I started the prophylactic ondansetron (Zofran). I have single-puked a couple things (see: attempt to eat edge crust above) but it just came out and was over, which is good enough for me.
Visits from friends.
Popsicles. I have never loved them so much.
Lots of wonderful notes from people. I owe so many people messages back. Sorry!
Napping. Friday I had a visit from a home care nurse, and we expected that I was going to be drained. That process is not exactly painful but is extremely uncomfortable and can turn into painful cramps, so I’d been advised to take prophylactic dilauded in advance. I wound up not being drained (see why below) and so was basically stoned for the day at 11:30am. We thought I might have to go in to the hospital to have the site looked at, which is happening tomorrow. But it meant there was a lot of waiting around. These two factors led to a lot of napping in the recliner, with the sun beaming into the apartment on my face, which was really nice. I am sleeping a lot at night but the extra sleep during the day is clearly not hurting either.
Lymphatic massage (and putting my feet up). When I came home from the hospital my feet were so swollen they couldn’t fit in any of my shoes. Now they can! There’s still excess water down there but we’re getting it out.
New Fucking Things (aka symptomology):
The most shocking was the fever and chills, which is a known and common side effect. Yesterday I took a nap in the recliner while Carrie was out for a walk with a friend. I was fine when I laid down. I woke up about 5 minutes before she got home and was shivering so much I literally couldn’t do anything else, like move or put on something warm. Temp was 101.9. But it was seriously beyond somehow–I don’t think I’ve ever experienced truly debilitating chills before.
I had had chills earlier in the day and took Tylenol and thought “oh haha, chills!” That’ll show me.
With Carrie’s help I got more Tylenol into me, and was summarily bundled up and put into the bed with pretty much every available blanket in the apartment on top of me. Two hours later my fever was breaking and I was pouring sweat. Then, at 2:40am (standard time, not daylight savings), I awoke shivering, but at least this time all the infrastructure was set up for the cycle. I’ve been trying to keep myself on max Tylenol dosage ever since but I still have a bit of a headache and some nausea comes and goes. Definitely on the agenda for the appointment at the cancer centre tomorrow.
The night before, I awoke at 5am, unable to breathe because my nose was completely blocked. I could breathe fine through my mouth, but oxygen comes via nasal cannula only. I’m on several drugs that dry me out, make me thirsty, etc. I tried everything I could think of, culminating with walking into the bathroom, turning on the shower, and just sitting on the toilet and breathing in the steam, which resulted in a spectacular nosebleed out both nostrils. Just an absolute flood. We added a humidifier to the oxygen compressor, and I’ve maxed out the humidification on my CPAP, and last night was better. Fingers crossed that that was a one-time deal. We will discuss decongestant options with the NP on Monday.
I switched my chemo dosage to 2 hours after meals instead of 1 hour before. I’m able to eat a little more, though once I start taking the pills, heartburn and lack of appetite kick in.
I’m not getting much drainage out of my PleurX but there is swelling around the site and it looks gross. I’ll have it looked at on Monday.