Today I had a port (port-a-cath or implanted port) implanted under the skin over my collarbone. It will eventually replace my PICC (peripherally inserted central catheter) for my IV chemotherapy treatment, at which point the PICC will be removed from my arm.
Like a PICC, a port is a catheter that feeds to the large veins near the heart. Unlike a PICC, which always has a length of plastic tubing outside of your skin, the port is completely under the skin. In my case, it has a metal disk attached to a plastic catheter. To use it, the skin above the disk is numbed, cleaned and pierced with a special needle, through which my chemotherapy will be delivered into the catheter, and then into my bloodstream. A PICC works similarly, but instead of stabbing, uses valves and connectors.
The insertion was a surprisingly painless affair. I was given some IV painkillers (through the PICC), some stronger local anesthetic, and then felt nothing as the radiologist guided the catheter down my vein and placed the metal under my skin. Like the PICC insertion, I was awake, and like the PICC insertion, I worked myself up way more than was justified or useful about the procedure.
This will be a major quality of life improvement for me. The PICC requires weekly maintenance by a nurse, the port also requires maintenance, but monthly, and only when not in use. The PICC is through the skin, and that entry point must be kept sterile at all times. The port is under the skin, and is as clean as the vessels it feeds into. This means I can submerge my port, which is forbidden with a PICC. Once the PICC is removed in a week or two, I'll be able to shower without spending 5 minutes wrapping my arm in plastic cling film. Come the summer, I'll be able to go swimming. I won't have to worry about getting so sweaty that the PICC dressing falls off (it happened in July). I'll also set off some metal detectors, which probably won't happen but sounds neat. And as far as cyborg implants to, metal deliberately placed under your skin beats plastic tube coming out of your arm any day.
I hope to never need another catheter inserted into my chest cavity. A port can last years. It should serve me for the rest of my treatment. I have a good idea of what using a port looks like in the chemo suite, I've spent enough time there and seen them in use. I'm less sure what it means for my take home bottle, but I'm honestly pretty excited that there's still new things here, even if I'd rather no one ever have to learn them.
It's 5AM and I'm so tired I want to throw up (I'm good for it, too, it happens most nights)
First waiting room, trade a health card for a hospital gown, go to procedure waiting room 4)
You'd think I could put on the gowns right by now
Post procedure. I think I'm about as stoned as I look, but dangerously I don't feel that way
I believe the lower dressing is the port and the upper was used to help the insertion. I was very tired and drugged, though, so it's possible I have it backward
Back at home. While my face is that red, the rest of me is not, the sterilizing chemical they use is dyed so you can confirm coverage. And I have yet to wash it off.
From the comments
James Petrosky: One of the people in the procedure room (probably a nurse) commented that I have very small ears while putting on the oxygen tube. Which is true, and a thing I've heard a lot before, mostly from romantic partners. What I hadn't heard is that I have a small nose. And because I can see my nose and it's always blocking something I want to see, I've always thought the opposite.
Sherri: What do you spend your time while you receive your chemo? Between [all my treatments], waiting my turn when an ER patient comes in, I might be 5-8 hours at the hospital. TV is what I did ( although some days I just rested). I would have brought stuff, but between the walker and a few other things…
James Petrosky: Sherri depending on your chemo, you can be there anywhere between 1-8 hours. I'm only there for 2-3. There are some Facebook groups I only check every couple of days, so I'll just save up stuff to look at. My Switch's battery lasts about 3 hours. I also spend a lot of time people watching.
Sherri: James Petrosky - people watching comes naturally to me. For many reasons. Not that I stare or anything, but even to watch interactions- as a teacher and instructor/ lifeguard as well as many other jobs with the public, it comes with the territory.
I said a few weeks ago that my cancer symptoms had become more noticeable than my surgery symptoms, and today's talk with the oncologist was a natural consequence of that. I see her again on November 6th, and return to the chemo suite on the 8th.
This is not inherently bad news. The CT scan showed no new tumors, my blood counts are good, there is no evidence of dangerous new mutations yet. I've simply been off treatment for over six months, and it's time.
I'll still be receiving the same chemotherapy cocktail, with the same two week cycle, and the same take home bottle. I am not excited, or looking forward to it, but at least I know exactly what to expect this time around.
I asked about future chemotherapies. There are an additional two varieties of chemotherapy regularly used for colon cancer (which is what I'm being treated for, although I have the related appendix cancer), I don't remember much about the third, but the second is largely similar to what I've been on so far, side effect wise. For me, it's comforting to know that the expected time my treatment options will last is longer than my prognosis, so I shouldn't have to worry about pain.
In the next month I need to get my broken tooth pulled, ideally quickly so it has lots of time to heal before my immune system crashes around cycle 3. I need to finally see my palliative care doctor and get those plans firmly in place. I need to get legal stuff in order. I need a port installed and my PICC removed. And I have one more day trip to make.
Leaving for the hospital
Masks are required in the cancer ward, which will be a comfort when I come back for treatment
Outside the hospital
Masks: great for keeping out germs, terrible for moustaches
Tomorrow is the anniversary of Cycle 1, Day 1 of chemotherapy. And I don't have a lot to say about it that I haven't said already. It's a horrible medicine, but it's what's keeping me alive and going on adventures. At this point, there's simply no me without it, and that's just a fact I have no choice but to accept, and that's fine.
Last year, late at night, after the PICC had been inserted (one year anniversary today), after I'd had my little walk down to the breakwater and gazed lovingly into the void where either Wasaga Beach should be, or where the sun just departed from, I returned home and took these two pictures. Pictures I did not intend to share. Pictures just for me, so I could track how the disease and the treatment were affecting my body.
Honestly, a year later, I expected a much, much, more dramatic change. Chemo is one of those drugs that really scales with your bodyweight, so I know for a fact, from the exact same calibrated scale, that I have varied by about a kilogram this whole time (2.2lbs). But the photos match the scale. The change is largely in the hair, not the body.
From the comments
James Petrosky: For clarity, the photos with green hair and the blue shirt are from 2022, roughly 12 hours before first chemo. The photos with the cool Michael Myers shirt are from 2023.
Its taken ten whole months, but I finally have a PICC emergency. I don't think it's going to require a visit to the ER, but it might. My PICC runs from my left upper arm, through a vein, to a point just outside my heart. Keeping the site where the line enters the skin sterile and clean is very important, as an infection has a direct path to the heart.
Today, in the heat, half my dressing peeled off my skin, exposing the opening in my skin to the air. In the grand scheme of emergencies, this ranks, but low. There are many other seemingly minor things that are emergencies for me - a fever or constipation for more than a couple days are what spring to mind, but this is the first I've had to deal with.
While writing this, the nurse has come and gone and the crisis has been averted. I've been instructed to stay out of the heat and sun, to try and keep the new covering in place longer. Our heatwave is supposed to end tonight, so hopefully this isn't going to be too restricting.
Its been a suboptimal couple of days. The new chemotherapy drug, Avastin, has new and exciting side effects that I was simply unprepared for. Avastin's purpose is to starve tumors of blood vessels, so it's a very important part of my treatment, but in doing that (I think) it's been giving me neck stress headaches. Yesterday, I made a delicious chilli, and ate too much of it. A mistake I hope to never make again, because the side effects have been making me suffer all day. I haven't been able to keep down over the counter medicines to help with any of the symptoms (I've called the hotline, I'm not in danger). I see a doctor for symptom management next week, as well as my oncologist, so these problems will be addressed soon.
To compound my difficulties, I've had two long phone calls - one, yesterday, with the cancer centre's social worker and mental health generalist, and while its fantastic to know (and like) my mental health professionals, my personal, pre cancer, history is heavy enough, and discussing how its evolved since August was draining before the side effects got mixed in. Today I spoke with a home care coordinator, mostly as an intake appointment, but we touched on the evolving nature of my needs.
Friends, if this has been too much, duck out now. It's fine, I love and care about you all, I need to share this but you don't need to see it.
Right now, my needs are very basic. I need PICC maintenance once a week. We touched on how pain management tends to go, and the role home care nurses play as people move from lighter opiates, to more serious ones, to long acting ones to pumps, and how keeping good records on use makes it easier to justify stronger medications when the time comes. We talked how more time in bed can lead to bed sores, the early warning signs and the waitlists for PSWs and physical therapists. We talked end of life, mainly the where of it. Not because it's imminant, but because I have all my mental faculties now and need to be thinking about these things.
It's been an exhausting few days. And side effects have stolen some of my precious good days. But we soldier on. The chili was perfect, I've learned that I should be grazing rather than taking large meals, Thomasin has been paying her rent with wonderful cuddles, the birds and squirrels have been a source of delight all day. It's been a tough few days, but I've had much, much worse, and the next few days are hopefully looking up.
From the comments
James Petrosky: I wouldn't have written the hidden paragraph if I wasn't comfortable talking about it, but please either nest your comments carefully or message me directly. I'll get to you all as I have the energy.
James Petrosky: If you were close to me during any of the times my depression and later bipolar disorder flared up, you know I have no problem discussing difficult health issues. I have similar intentions here, serious health problems affect us all and need to be better normalized. I find Dave Warnock, a long time atheist/secularist activist who was diagnosed with ALS a few years ago, and has been very public about how that's affected his life, from diagnosis to end, to be inspiring and more than a little bit of an inspiration for these posts. His Dying Out Loud was important to me before all of this happened, and has taken a new importance since.
I have not accepted end yet. I'm very hopeful about surgery, and feel like I'm due for a win when it comes to the outcome of that surgery. But it's been an emotional couple of months, and the hardest week since I started chemo, and friends, I have no intention of hiding this messy stuff for you.
Its been over a year since the then unknown pain stole my preferred sleeping position (on my side, body pillow between knees to help with my back) from me and forced increasingly elaborate pillow piles to prop myself up to find rest. And today, today I successfully had the most restful nap in that old position. Because of the PICC, I can only lay on one side, and I can't do it while I'm receiving chemotherapy, but this counts as a major quality of life win. I'm choosing not to read anything more into it, but I am excited to share the news with my oncologist next week.
They've closed down the beach for the season, and left me with a forest of signs. Two of three restaurants are closed until the spring, and I plan one more takeout poutine from the last if it's still open this coming weekend. The normal cycles of ends and restarts are always a thing I like to mark, to notice, but they seem especially bittersweet right now. Fortunately there are these small victories (and the fact that the best poutine in the area is open year round)
The PICC line goes directly from your forearm, usually non dominant, to your heart, following large veins. This makes it a extremely dangerous potential route for infection to easily and directly reach your heart, with consequences as dire as you'd like to imagine.
I have two red lines that, if crossed, I'm told I must immediately go to the ER for emergency intervention. They are above 38 for an hour, or above 38.3 at any point. When I'm running any sort of fever (for me, I've set my cutoff at 37, because I rarely stray beyond 36.5), I'm to take no medications that lower a fever.
All my painkillers are Tylenol based. They all lower a fever. So I'm also in a lot of cancer pain, with a cold style headache on top of it.
Long preamble to say that this morning I had a fever that peaked at 37.8. I didn't panic, but I did have a very tense couple of hours. Yesterday, I got my 2nd Covid-19 booster (hurray bivalent vaccine), which was almost certainly the cause of this. But I also had my PICC dressing changed, and the nurse was extremely careful, but who's to say I didn't get an infection (well, I am, now, but at 5AM that was not clear).
The tldr of it is everything about cancer treatment, or any treatment, is a trade off of risks and benefits. The PICC is a tremendous risk, but also a fantastic benefit. I was not ready for the level of responsibility I have to take for my own body during this. But it's a wild and fascinating ride
My face when my temperature went up for the 3rd consecutive hour (probably 37.6 here, I jumped into go mode when I got 37.😎
Relief after reading 37.4 (also exhaustion)
From the comments
James Petrosky: To be clear, I'm in no danger. I never was actually in any danger. And if the situation had turned, I had everything ready to go to address the situation before it turned truly dangerous.
My partner and I have talked through all this stuff with the oncologist and nurses. We're not expects by any means, but we're informed and empowered and ready to act when needed. ❤️
Also, the side effects were much more minor for me this time. I got a proper fever all the other times, and were I healthy and working I'd probably have gone in today without even noticing it. So yeah, bivalent vaccine: 👍👍
Tomorrow is it, day one of my first round of chemotherapy. I'd be lying to you if I said I was okay, or that I was calm, or ready. Because I'm none of those things. I haven't even fully come to terms with my diagnosis. There's been no time, and getting to this point as fast as possible has quite literally been a case of life and death. I'm exhausted, I'm anxious, I can't sleep.
Tomorrow beings answers to important questions like how will I tolerate chemotherapy, what are my side effects going to be like, how careful am I going to have to be.
Tomorrow brings hope. The only way out of this for me is through the cancer centre, through these appointments. It's absolutely terrifying, every single part of this has been terrifying. Every new pain has been the terror of further spread. Every Covid-19 type symptom for months terrified me that I'd delay this process (and now will cause anxiety because I'm about to become immunocompromised). Every single thing that is slightly abnormal is a new horror. And they will all remain horrors, the thing that has replaced university exams or abusive Target liquidation customers as the antagonist of my stress dreams. But, tomorrow, I also to start striking back. And that's not nothing.
Once more at the breakwater
PICC line part 1
PICC line part 2
Nurse Thomasin doing her absolute best to keep me level
The PICC line, for those (like myself) who were unaware, is a line inserted into a vein in my non dominant forearm that extends to the heart. I'm glad I was ignorant until minutes before the procedure, because that is the stuff of nightmares for me, even if the actual result felt, at worst, a bit weird
It's hard to sleep some days, procedure days especially.
Once installed, a Peripherally Inserted Central Catheter (PICC) line must be cleaned by a qualified medical professional once a week. Since in hospital chemotherapy appointments happen every two weeks, they arrange a home care nurse to visit during the off week to clean and maintain it. Here you see me, once again outside the laundromat, after having a long difficult conversation, detailing my whole medical history, just exhausted by the crushing reality of it all.
Three more days.
(My arm's up all goofy because my seat is leaned back to about 45 degrees, because of the abdominal pain, and there just wasn't much else to do with it.)
