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.
I got this hat in Peru
I'm the slasher in a Pumpkin Horror Movie
I still can't play the otomatone
Bessie is too squirmy and impulsive, she's hard to take pictures with
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.
When I take a car selfie, I try and do it with style. Too bad my BURN THE GOAT pin isn't visible (look up Gävle Goat for more info)
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)
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.
In Royal Victoria Health Centre's Cancer Centre waiting room
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.
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.
Haunted mirror
Back at the marsh
Sweater bear sweater is the best sweater
I like scarves normally, but they've become a lifesaver to me now. They're the easiest layer to remove or replace, and are much easier to carry than a sweater or coat. They've become an item I always have around rather than one I wear December-February
Autumn colours
This was supposed to better feature that exploded cattail over my shoulder
The sky menace with spikes of cloud
From the comments
James Petrosky: The cattail, in its fluffy magnificence
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.
Dawn, down at the beach
It's cold down at the (other, larger) beach
My goof poodle ❤️
My poodle pals
From the comments
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.
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.
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.
The garden is starting to look spoopy (also today's hospital fashion)
Somehow I forgot to get one with a hospital sign, but here I am, terrified out of my mind waiting jn a hospital room in a strange city.
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)
Bessie didn't care for my new selfie stick
Autumn is the dunes of Wasaga is something else
More dunes
I found a quiet spot for a quick sit down
From the comments
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
Immediately noticeable side effects were pretty easy this time. I've learned how to properly take my side effect medicine, especially the one for nausea. My energy levels are back near where they were on last day 14.
But it was a bad weekend for my hair. After carefully brushing out a mat that developed over the weekend (probably started earlier, I've been really scared to touch it at all) I lost half a sink full. I knew this was coming.
Today I speak for the trees
I didn't intend for this plant to be in frame, but I'm going to try again sometime.
Waiting for my Catbus
No geese, few ducks, two swans.
I overdid it, I should have done the 2km walk, not the 3.5km one. I've just realized my mistake, but I already passed half way, so I have to keep going.
The giant blade of grass at the middle left ruined a bunch or the great photos because it is a cruel abstraction
I moved the Squishmallows to their hammocks and Thomasin is instantly happy to have her fifth favourite napping spot back. She immediately came for a snuggle and even let take this photo
Tomorrow starts Cycle 2. There will likely be six cycles, then some more testing, and then we'll know how well all of this is working.
I'm feeling a lot more calm and comfortable this time. I've got a good idea what's coming (three days of barely getting out of bed, one or two more feeling pretty rough), but I know I can expect the rest of the cycle to bring some energy and a lot more joy than I've been used to the previous couple of months.
I love the fall clouds over Georgian Bay
The tree is pretty neat, but you should have seen the fossil coral on the rock I used as a support for the camera (I forgot to get a photo sorry)
Can you tell which way the wind blows by the pines?
A short and not comprehensive list of songs I've had to remove from my playlists since being diagnosed with cancer:
Kettering by The Antlers
Easy/Lucky/Fred by Bright Eyes
There are certainly others, but these found themselves removed today.
I want to reiterate how wonderful you've all been, how much your kind words and Facevook reactions mean to me. You all mean so much to me, thank you all so much for existing ❤️
From the comments
Mica: Have you seen the anime short of the little girl who gets turned into a gengar? So cute
I haven't felt this good in months. My pain levels, while still much higher than my pre cancer baseline, haven't been this good in months. I have energy, apatite, drive. Chores are caught up, projects are being done, hobbies being perused. But there's so much to do before Cycle 2 starts Thursday.
Laundromat selfies are practically a requirement now
Its fucking wimdy
From the comments
David: So you can do this ?
James Petrosky: David I'm going to keep going for sure. It's not a war or a battle, it's a seige. I'll hold as long as I can.
James Petrosky: I saw my poodle pal today ❤️
It was almost too dark for her goofy face
Cycle one is drawing to a close and I have A Lot of appointments this week. And I know I'll be bedridden for the first five days of cycle two at least, so there's a lot to do. But for now, I keep busy, I work on projects, I find water birds in new and exciting places. It's not the life I expected, but I'll still make it mine.
Public art in downtown Midland, Ontario
Honestly I think I like loons more than geese, they're a magnificent and haunting bird, geese are just what we deserve. Also, I absolutely love geese as much as I say I do. My love for loons is passionate, but silent.
A nice thing about being a trades person is having excellent practical outer wear. Balm Beach has no street lights, but I was extremely visible (dancing badly to Firework, no less) and completely dry.
This cycle is now more than half over. I'm looking forward to my next visit to the chemo lounge with some trepidation, knowing now what it's going to bring, but also with the knowledge that I do physically feel a lot more well with treatment than without. My quality of life has not been better in months.
However, I have to visit the hospital Tuesday, Wednesday, Thursday and Saturday for consultations, bloodwork, treatment, and other care. Being sick is exhausting, but beautiful fall days (that I forgot to document) like today make the whole mess so very worth it
I gained a new skill!
I gained two new skills!
From the comments
James Petrosky: Also I think I have a problem
James Petrosky: I'm not great yet, but I have lots of time to practice
I barely got out of bed today, after my little scare this morning. I'd have been fine if I could have had a Tylenol, but I'm not allowed to pharmacologically lower a fever, so I couldn't address my headache, either. Enjoy some terrible bed head selfies I sent to a friend but don't have enough sense or shame to keep hidden.
It was almost too dark for her goofy face
