Cycle 5 Day 11
I visited the Toronto zoo with my partner today ❤️ It was a good day, but I learned how much by ability to produce and retain body heat has been affected.
Some additional photos (without me in them)
Cycle 5, Day 9
For weeks now I've been plagued by a thought. A worry. A concern. I feel pretty good most days now, as good as I have since Cats was in theatres, but I know that won't last long term. I know that some day is going to be the best day I have left, and after that all that remains is a slow decline.
In just under two weeks, I have a CT scan to see how I've responded to my first round of chemotherapy. In about two weeks, I expect the results will be available. And in just under three weeks, I expect to have them explained to me, in great detail, by my oncologist.
I feel fantastic, and I expect a good result, but cancer is a tricky foe and mine is a fairly rare and poorly understood. So I worry about the short term. And I worry about the long term. The first should be fine, but the second is a certainty (ignoring the surgical option, which itself isn't a sure thing and is dependent on the short term results and I don't think about often because it is itself a whole new assemblage of horrors).
I'm fine. Honestly, I'm thriving. I've never been so on top of my hobbies, in control of my day to day life. It's not a feeling I'm used to. But I know it's temporary, both because treatment must progress because we are working towards the surgical option, and because even with the best treatment available, my care is still palliative. I'm under seige, and there may be no help forthcoming. We hold out as long as we can, but one side will break.
Photo from 15 minutes before sunset at Woodland Beach.
James Petrosky: This is significantly more bleak than I meant it to be. I'm not changing a word, but know that my mental health hasn't been this resilient since 2010. My medication is the right one, my levels are good, I've done my time in therapy and have a good team in place now. I'm not suffering, nor am I avoiding my problems by overworking. Things are going well. But there's simply no way for me not to be constantly cognisant of my own mortality at all times. And it's been this way for months. Given the situation, it's fine, I have a good team supporting me, after all. But it is a lot.
Cycle 5, Day 7
I haven't felt as good as I have this week in a long time. Having energy is nice, and not as common as it used to be, but what's usually missing is the focus to be able to do anything, and the ability to take joy from activities.
With the help of the cancer centre social worker, I've got what I need to join support groups by and for cancer patients. I've even got a good lead on some groups that are all young people (I'm still a young person in cancer circles, apparently), which I'm really hoping can help with the social isolation that my immune system and the coming winter force on me.
Cycle 5, Day 1
This was the easiest visit to the chemo suite yet. Even though I had a stronger negative reaction to the chemotherapy this time than any of the other cycles. And, upon returning home, I didn't immediately crash. Don't get me wrong, I still feel like trash and wouldn't ever want this in any other situation, but it's nice to have not lost a full day this time.
Cycle 4 Day 13
This is the last day of this cycle. I had my chemo day moved forward to Wednesdays so I only have to travel ten minutes to get disconnected instead of forty (or wait for an hour in an increasingly Covid-19 filled emergency room).
It's frustrating, but also obvious, that other health problems don't take a break just because you're getting treated for cancer. My mental health has been full of ups and downs this cycle - mostly ups, which you're forgiven if you think is better or easier. It's not, hypomania is truly unpleasant. My sleep has been erratic, and I need much more and more constant sleep now than I have in decades. And my appetite has been strong, which isn't all bad, weight loss is a common symptom of both colon cancer and chemotherapy, but one of the drugs in my chemotherapy really messes up my digestion and makes it much, much easier to overeat at a time when I'm prone to overeating or eating too quickly. It's all manageable, but instead of how good I was feeling back in cycles 2 and 3, I'm now constantly in some discomfort, physically and mentally.
This, too, is why I've been taking no pictures and sharing no posts. My brain is too flighty and unfocused. But it's nothing to be too concerned about. It's normal for me to have these episodes, even though I'm properly medicated. It will end soon, and I'll be back to my new, profoundly strange, normal.
Ron: Any concern the altered digestion will affect medication uptake?
James Petrosky: I take my chemotherapy intravenously, so at the very least the most important medications will be unaffected. It might slow the uptake of lithium a bit, but since it takes a few weeks to get to a theraputic level in your blood, I don't think its something to worry about. The thing I'm more worried about is that one of the drugs I take for chemotherapy side effects can trigger manic episodes in bipolar people.
James Petrosky: But its a good question to add to my list next time I see my oncologist
Ron: I hope those potential side effects don't appear or are at least mild.
Cycle 4 Day 6
This cycle has been a lot easier on major side effects, but frustrating on the minor ones. I've felt at best okay, which all weekend was fantastic, but I never started feeling better coming out of it. I'm tired, often have a headache, and can't get the aftertaste one of the chemo drugs leaves me with out of my mouth. Still, I try and make the most of it. I've been working on building an analogue synthesizer all summer, and I'm on track to finish it this week. I got some discount costume wigs, and the next project is to do some work on them (which I'm really excited for). The cooler weather has really put Thomasin's cuddle instinct into overdrive, which is fantastic except when the soldering iron is on, which is a delight and highlight of every day.
James Petrosky: The album was only going to get one from a shoot, but I also really like this one
Claire: Ok so I definitely thought the wigs were filters 😂
James Petrosky: They're all real objects which I own and hope to have the guts to wear outside
Cycle 4 Day 1
Another day, another visit to the chemo suite. It's astounding the things that can become routine. I've got the prep down, I know exactly when to leave home so I spend almost no time in the waiting room (the last two times they were looking for me within minutes of check in). I know when to ask for the injection for the hot flash side effects. I can time my second washroom trip so that I'm not connected to IVs and can walk feely and unencumbered. I know exactly how to set up my apartment for maximum comfort for both me and Thomasin. It's all routine. It's all normal. It's very surreal.
James Petrosky: My moods have been a mess the past week or so, this was emotionally the hardest visit since the first. This is my life now, and it's really hard to accept.
Philip: It's really strange how people can adapt to these things. How long does your regimen usually take? Do you try to doze or do you have some activity to distract yourself?
James Petrosky: Its been pretty consistantly 2.5 hours from entering to leaving the hospital. I bring my phone and Switch to occupy myself, I haven't dozed yet because its an hour drive home and I want to be alert, and because I spend the next two days dozing. Lots of the other patients sleep, though, I assume their drug cocktails have stronger side effects.
James Petrosky: Nurse Thomasin reporting for duty (she's very, very content right now ❤️)
Cycle 3 Day 11
Today was the sort of day that let me briefly forget my situation. To just feel good, better than I have in over a year, and exist in the world.
Cycle 3 Day 10
We're getting what's likely to be a final reprieve before the winter descends upon us, and I intend to take best advantage of it.
Back at the start of this, I said the currency you spend is the feeling of normal. We left normal behind months ago. The new currency is the little experiences I can jam into my good days. Seeing a raccoon, petting a dog, talking to someone I haven't seen in a while (or have, and want to talk to again), interacting with all of you. Little things. And I need to save up enough so I can pay the toll and make it through The Chemo Days.
Cycle 3 Day 9
Support your local Pumpkin Inferno (today was a very good day ❤️)
Cycle 3, Day 8
Today was a much better day than yesterday. I threw up today. Quite a few times. But it was an overall good day. Never in my life did I expect to be here, but life can be strange sometimes.
This cycle we added a new drug to my chemotherapy cocktail. I'd been on something called Folfiri, which is a mixture of three drugs used to treat stage four colon cancer (and probably other things, too). This time we added a drug called Avastin. Avastin is used to treat a wider variety of cancers, and, very generally, acts to restrict blood vessels to tumors.
However, none of these drugs are targeted. And Avastin has some wicked side effects. I've had crippling headaches all week, and I suspect that my recent vomiting is also related. Happily, I have an appointment with my symptom management doctor next week, so I'm certain we'll be able to either resolve, or at least make manageable, these side effects.
Cycle 3, Day 7
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.
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.
Cycle 3 Day 4
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)
Cycle 2 Day 14
I spent a few hours at the cancer centre today, having my once per cycle checkup with the oncologist, and getting blood drawn to monitor a few things, most importantly to me immune system counts (mine are pretty good, given my situation). While there I once again browsed the library of pamphlets. I counted twenty five different specific cancer type pamphlets, only four had photos of people who might have been my age. Three of the four were reproductive cancers. The remainder, including colon, featured people decades older.
I'm very tired, my mood has fallen a bit, but I'm ready to start Cycle 3.
Cycle 2 Day 12
Thanksgiving is probably my favourite statutory holiday. I enjoyed the one I had, it couldn't have been better. But it's still difficult to mark such milestones.
Cycle 2 Day 11
Last week I noticed that my hair was thinning noticeably. Today I noticed that my facial hair is following the same pattern. But I was able to be the most physically active I've been in nearly a year today. I was limited by dinner time, not nap time, for the first time since at least the spring. The side effects are difficult, and even though it can never be a cure, the treatment works, and it's worth all the hair loss.
James Petrosky: The cattail, in its fluffy magnificence
Cycle 2 Day 10
Its Thanksgiving weekend in Canada, and we're having our turkey dinner tonight. We rarely have it on Monday, the day Thanksgiving actually falls, because you have more non work days to eat delicious leftovers. This time, it's not work, but the start of Cycle 3 on Thursday, that motivates celebrating early.
To my Canadian friends, I hope you have the Thanksgiving you dream of.
To my non Canadian friends, have a wonderful weekend.
James Petrosky: Another of the poodles on their own
James Petrosky: The menacing October sky of Lake Huron
James Petrosky: Thanksgiving dinner round these parts (this little cottage, specifically, and not necessarily anywhere else) is a roasted turkey served with fresh (never canned, canned was served at a family gathering once years ago and that faux pas is still talked about), mashed potatos, dressing (no stuffing is served), gravy, boiled turnip and steamed green beans. Peas often replace the beans, but we found some fresh ones this week.
Unfortunately neither of my brothers, nor my partner, could make it. But we do the best with who we have (namely, my parents and the poodles)
James Petrosky: In case you were wondering what we watch on tv during and after dinner, is the United States National Park Service Alaskan bear cam and a collection of webcams in Siberia.
James Petrosky: Sunset at Woodland Beach
Cycle 2 Day 9
Today is the first properly cool day yet, we've had a some chilly mornings, but days have made it to the double digits. Not so today. Today I learned I'm going to need to get used to wearing a lot more sweaters than I've ever had to before.
I'm choosing to take this as an opportunity rather than a setback, because sweaters are quite nice and I adore cardigans.
Cycle 2 Day 8
You know those days that feel like overwhelming victories because they went fine rather than catastrophic? I'd file today with those days.
The news is generally good. Mt. Sinai has similar procedures as Royal Victoria does. My case will be presented to the surgical oncology team, who will decide if and when surgery may take place. Typically there are two rounds of chemo (each of six two week blocks, for six months total) before you become a candidate for the surgery.
Cycle 2, Day 7
Tomorrow I meet the second oncology team. I cannot possibly express how anxious I am. If I am accepted for surgery (which i won't find out tomorrow) and if it goes exceedingly well, I could be free and have an almost normal life. But that's a lot of ifs. And I'm terrified that I'm not going to be a good candidate. And everything that entails. But I'm trying to stay hopeful, and if absolutely nothing else I'll know a lot more tomorrow by this time.
(What I don't need or want is any false assurances right now. I don't need to be told to stay positive, my moods are stable and toxic positivity is as dangerous as negativity. The best way to show support for me over the next day is with photos of adorable or delightful things and creatures. Please respect my wishes in this, but also please don't come down on anyone who doesn't see all this right away or interprets it differently. I'm an adult and I'll engage as I feel the need to. I love you all)
James Petrosky: I edited the one photo I said I wasn't going to and now I really like it so I'll just shove it here
