In twelve hours, I'll be in a hospital gown, enduring what I expect to be the longest two hours of my life. I didn't really sleep last night, nor the past few, and don't expect to tonight. I've been overwhelmed by questions and forms and information (guess who didn't think to have his insurance information ready). The weight of it all overwhelms.
I've known this was the path I wanted to take for many months. I've thought about the outcomes, likely and unlikely. About the costs and complications. I know I've done my due diligence, but still this feels like a decision I'm unable and unready to make. I don't think any amount of information and time would change this. But I know I've taken the time, and I know that whatever part of me is voicing these doubts is completely ignoring the horrors that abandoning treatment would mean. I'm ready to make this choice, and have been for a while. I don't have to like being forced by the cancer into this position, but I do want to try and make the best of a terrible situation.
I may not write again for many days. You're all important to me, and I hope to have someone update you all, but please be patient, my family rightfully respects my privacy much more than I do.
The procedure often can run as long as ten hours, it's going to be a very long day for everyone but me.
I can't be sure I didn't think it back in August, because August was the darkest time in my life and I have very little memory of it, but I don't recall once entertaining the thought of how unfair this all is. Don't get me wrong, cancer is one of the most profoundly unfair things I can imagine. If we were to personify the universe itself, I'd say criminally unfair. But personifing the indifference of the totality of existence seems as valueless as fixating on the unfairness of it all. This is just how life is. It is our responsibility as creatures capable of understanding this fact to do what is in our power to create places where we work for, and celebrate, fairness and hope and love.
Friends, thank you for doing your part in making one of those spaces for me this past year. In a very, very literal sense I could not have made it this far without you. One of the things that makes cancer so insideous is how long treatment takes, and how disconnected you become from everyone who doesn't make an effort to stay in touch. Thank you all for making that effort, however small you might think it was.
Tomorrow morning at around 4AM, I leave Midland, not to return for many weeks. Thomasin will be we cared for, and I will miss her tremendously. At 7:45AM I have to be at Mt. Sinai for a pre op appointment, and the remainder of the day will be spent following whatever instructions I'm given. Friday, at 7AM, I have to be back at Mt. Sinai to check in for my operation, which is scheduled for 9AM, making those two hours on Friday by far the longest I'll ever have to endure. And then, with luck (which, to be honest, belongs in the same bin as unfairness), I can close this chapter of my life, but regardless of luck, the long process of recovery can begin.
From the comments
James Petrosky: The hardest thought I've had over the last week is knowing that, even in the best possible outcome, I may be cancer free, but I'll never feel as good as I have since I finished chemotherapy. I'm trading some quality of life, largely in the form of digestive organs, for quantity of life. This is a calculated risk. I've done my reading, spoken with the specialists, and know what the remainder of my life looks like with and without the surgery. I've followed the science, which is the best we can all hope for.
The corelary to this is that I never felt worse than I did in the lead up to chemotherapy, and probably could not endure the pain I felt at the appendix biopsy again.
Its been a whirlwind weekend, with the notice that Mt Sinai gave me there was no possible way to spend time with everyone I'd have liked to, but I managed to spend time with my immediate family, my partner, and a close friend. It was largely joyous, but we all know that this procedure comes with real risk.
I'd bet that end of life planning of any sort is strange and uncomfortable at any age, but it's completely unreal at 36. So is going through a list of organs, discussing how you'd feel about them being partially or completely removed. What sort of trade offs you'd make in terms of quality of life to get more time. But some of these conversations are necessary, some are inevitable, and some just sort of happen.
I don't expect a bad outcome. I wouldn't have consented to this operation if the expected outcome did not improve my prognosis. And I'm doing my best to focus on that.
From the comments
James Petrosky: I'm doing pretty well, anxiety is overall at a lower level and peaks are neither as sharp or frequent as last week. There's much to do this week, but I have excellent support.
Today's photo captured minutes after learning that June 9th, next Friday, is my surgery date. I'm calm again, for now, after an intense couple of days.
After the initial euphoria of making it to this stage, I had a couple night of doubts about whether this was what I wanted. Yes, it's the treatment for the type and stage of cancer I have, but it comes with substantial risk and high cost. But I realized that, while a healthy level of concern is desirable, these thoughts were coming from a place of denial. A place that, even after eight months of chemotherapy and countless visits with multiple oncologists, refuses to accept reality and just wants to wake up from this nightmare. One of the things I try my best to live by is believing as many true things, and not believing as many false things, as possible. It isn't always easy. Those false beliefs about my health have been put to rest. I have stage four colorectal cancer, and on June 9th we're going to do our damnedest to remedy that.
I won't know what, exactly, they're going to remove (if anything, because they could still find something inoperable on the day of), but here's a rundown of what I consented to:
- cytoreductive surgery (removal of cancer in the abdominal cavity)
- heated intraperitoneal chemotherapy (HIPEC) (hot chemotherapy to kill any remaining cancer cells)
- omentectomy (removal of fatty tissue surrounding abdominal organs)
Also possibly the following, as necessary:
- splenectomy (removal of spleen)
- cholecytectomy (removal of gallbladder)
- bowel restriction (removal of part of the intestine, probably including appendix)
- gastric restriction (removal of part of stomach)
- stoma
Whether the surgeons are successful at removing all the cancer or not, things are going to be very different. My understanding is that most people recover most of their quality of life, which is something to hope for.
From the comments
James Petrosky: I expected the appointment notification to come by email, like it usually does, so every spam message I recieved all day nearly gave me a heart attack. But then I got a 416 phone call and knew exactly what it was.
Jon: Oh, man, I hope you don't end up with a stoma. After two years of that, I wouldn't wish it on anyone.
James Petrosky Jon it's quite likely I'll end up with one for part of the recovery, but the risk of needing one perminantly is something I've given a lot of thought to over the past nine months. The risk is worth the potential years of otherwise good quality life to me. Jon: James Petrosky quality of life is very important, I didn't think about it that way. Also, I had a particularly difficult one. Your experience will probably be different from mine. James Petrosky: Jon for me, if I don't get this surgery, I'm stuck with chemo until I decide I don't want it anymore. All my choices are, from a bowel point of view, pretty bad. Most people end up only needing them for a month or two for this procedure, so I'm hoping for that.
James Petrosky: You know what you do immediately after getting some of the most important news in your entire life? You make the fucking bed, because laundry still needs to get done, even if you're in crisis mode about your own mortality. Because you're going to bed tonight, even though you might just staring at the ceiling fan all night. No one else is going to do it.
The experience of cancer treatment is a whole lot of things, but one of those things is all the same bullshit chores you were doing already.
James Petrosky: But you don't cook dinner, screw that, you go get some Popeye's.
I submitted the surgical consent forms this morning. It was a single page. It feels wrong, somehow. This is one of the most important decisions I've ever had to make, and it just feels like the process should have been grander.
Friday, when I got the news, I was put into an excited state. For the first time since August, I felt hope and elation. It was fantastic, but like so often happens, it was too much.
Last night, I came down. The weight of it all hit me at once. Not just moving forward with this stage of treatment, but the having cancer itself. It's happened a few times, usually when I was getting ready for chemo again. There's part of me that refuses to accept the diagnosis, and when that part has to accept reality, in this case reading the full list of procedures I consented to, the resulting mental chaos is indescribable. And then there's the constant feeling of terror.
I had a long, at least for my doctors, phone call with the surgical oncologist at Mt. Sinai this morning. They found more cancer with the laparoscopy than with the CT scan, which was expected and not a cause of concern. We're moving ahead with the HIPEC surgery, tentatively scheduled for mid June.
Which is terrifyingly, excitingly, close.
So, what is HIPEC surgery? It's a two stage procedure. The first involves opening up the abdomen and removing as much cancer as possible. This can be achieved through cutting away tumors, burning them, or removing partial or whole organs (because my cancer is thought to have started in the appendix, I won't be leaving with that organ for sure, as well as part of the large intestine near the appendix). Next, because tumors are more diffuse (or, at least, because they grow different) on the peritoneum, the surgeons will scrape the cancer cells off it. That's stage one. Two is where the HIPEC comes in. HIPEC stands for hyperthermic intraperitoneal chemotherapy, intraperitoneal means within the peritoneum, which encases the abdominal organs. Basically, after the first stage is complete, they fill your abdomen with hot (hyperthermic) chemotherapy to kill off any remaining cancer cells.
To get this far I needed to show a good reaction to chemotherapy, so that the second stage would work, and my cancer needed to be operable. Which brings us to the first potential problem. Just as the laparoscopy found cancer the CT scan wasn't capable of seeing, when they open up my abdomen, they might find a tumor that renders me inoperable. Blood vessels too important to risk cutting or organs you can't live without being affected by tumors, or significantly more cancer than they expect, are the examples given to me. I won't know if I fail out here until after I wake up after the surgery.
The surgery will last 6-10 hours, assuming it goes ahead. For this part, and this part alone, I'll have it much easier than my loved ones. I'll probably be in the hospital for a further eight days, but possibly more, depending on complications. Recovery might take as long as four months.
I have chosen to go ahead with this procedure. Honestly, I've been certain of this since September of last year. It is not a low risk procedure. I know the risks, the potential complications, that I'm going to lose organs and will need to make changes in my life because of that (an easy one is giving up alcohol, between the cancer and the chemo, my liver needs a long break). But this is the only way out. In the best case scenario, the cancer is gone forever. I don't expect that outcome, I've learned my statistics well enough for that, but the most likely case is still years without recurrence, and no recurrence means no chemotherapy.
Because I'll let you all in on a secret, I probably had two more three month rounds of chemotherapy in me before I gave up on it. I've known it since around my birthday in February, when the second of my two rounds completed. Chemotherapy is amazing life saving medication, but it would be heinous torture to administer to someone in any other situation. And my chemotherapy was palliative, not curitive, clearly I'm willing to go through a lot for a long term solution (8 months of chemotherapy and a major operation), but with a palliative treatment, you've got to look at when it isn't worth it anymore. And, if you've struggled with depression your whole life, you've got to be damned sure about it.
After recovery, like all cancer patients in remission, they'll monitor me with CT scans for signs that it's come back. In a small percentage of cases, it comes back right away. In most cases, it comes back eventually. In a small (but not as small as the first case) percentage of cases, it never comes back. If it ever does, all sensible treatment options are on the table, but for me that would probably mean going back on chemotherapy.
But that is much too far off to even consider imagining right now. I've got an apartment to ready.
From the comments
James Petrosky: I don't know where to put this, and I don't know if anyone else is going to get much from it other than a feeling of sadness, but Hank's experience matches my own quite closely, and all the advice given matches what I'd want to say, but have difficulty articulating.
Surgery recovery has been slow. The pain disappeared a week ago, but I still tire quickly when walking uphill. I'm still off chemo, which makes things a lot easier, but it's still difficult.
My mental health has taken a hit over the past few weeks. When combined with the recovery, it means that I don't have much energy to do more than the bare minimum. It's unfortunate, but tends to happen every change of season, so it wasn't unexpected, and I have an appointment about it coming up.
From the comments
James Petrosky: The township put the benches and picnic tables out down at the beach this week. It makes my little strolls a lot more pleasant.
I'm in Toronto, at Mt. Sinai, waiting to be called in for whatever preop activities are required before my laparoscopy at 11:30. I'm exhausted and haven't slept right in a day's and haven't eaten since Monday. But I'm excited.
This is the face of someone with a surgical date in ten days. I'm scheduled for laparoscopic surgery next Friday, the 28th. This also means that my chemotherapy appointment for tomorrow is cancled, and Cycle 16 might last around a month.
The point of this procedure is to determine if I'm a candidate for the full HIPEC surgery. If I make it by this hurdle, I should get a surgical date sometime this summer. If I don't, depending on the specific reason, that's it. No HIPEC. And HIPEC is the only way out.
Next up is a pre op appointment Thursday.
But, for now, I'm not going to think too much about all that. I bought some pastrami, good buns and my favourite sourkraut (and a case of Coke) to celebrate tonight. Maybe I'll even watch Cats, it's been over a year since I've seen it.
Gang, I'm so tired. Tired of counting cycles. Tired of the side effects. Tired of living in a sort of constant existential terror.
I took a walk to the beach, roughly 400m, and found myself lightly winded when I got there. Walking back was the same story. I've been doing some basic yardwork, collecting leaves that fell on the patio stones mainly, and after three hours of medium-light labour I'm so exhausted I need a nap. I've never been the most fit person, but even at the peak of my cancer pain on the late summer I was still able to work (medium-heavy labour) fifty hour weeks without wearing myself out. It's a lot to get used to. And to add further insult, my nose has been running constantly for the last month. It's a known side effect, but it's gross and frustrating.
For the sake of my mental health, I need surgical dates to look forward to. I'm hoping I hear something this week
From the comments
James Petrosky: Most of the time I'm pretty comfortable with my mortality, but the anxiety and depression and exhaustion have a way of eroding the peace I've made and found.
James Petrosky: My personal nurse has been a tremendous help, though
Today was sort of a comedy of errors. I had some bloodwork done for my lithium, and the technician took two tries to get it right. No big deal, it's never happened to me before, but it happens. My PICC line was clotted, which has happened twice before, but this time it couldn't be cleared by running saline. It was taken care of and works properly again (the blue thing holds my take home chemo, which couldn't happen if it wasn't working) but that means they needed to run a temporary IV for the hospital administered chemo. Friends, it took four tries. I left with two IV bandages on each arm. But I got my treatment, and that's what matters.
From the comments
James Petrosky: Bonus other bullshit I've been up to! The pinkish one is a long finished project, but the purple one is brand new this week. I'm very happy with it
James Petrosky: I also have an ashtray, which runs off batteries. Blue LEDs have a much higher voltage drop than red, so as the batteries run down the mix gets more and more red, and then dims in a really pleasing way. But that doesn't come out in a still photo.
I leave for my chemotherapy appointment in a couple hours. It's not going to be too bad, I'll feel like throwing up for three days (but probably won't because the medications are effective), I'll be unable to eat anything but yoghurt and white toast with jam (and I won't want to eat that past the halfway point), and I'll mostly be just awake enough to feel the time pass.
I've developed such a feeling of dread for this. It was easy to motivate myself when the memory of the cancer pain was still fresh. But it's been six months since I felt that pain, six months since all of my symptoms are the direct result of the treatment. I know I need to keep getting treatment, know that I'm in another phase, that things are moving, but I also know that this dread is spreading earlier and earlier into the cycle. I started feeling the anxiety and dread Sunday. It used to only start day of.
The cycles carry on, and they're exhausting.
From the comments
James Petrosky: It doesn't help that my appointment is later in the day than usual today. I just get to sit around, full of worry, burning through the dumb internet nonsense I'd normally enjoy while receiving treatment.
James Petrosky: I clean off my bed for maximum chemo comfort, so I made this adorable pile of cute friends
Gang, I hadn't realized how bad my fatigue had gotten until yesterday. In the full summer heat I used to be able to see twice as many exhibits as I did yesterday. It wasn't cold, but I had a chill much of the day. The immediate chemotherapy side effects aren't too bad (but I think they're getting worse), but these slower acting side effects that build cycle after cycle are really draining. Fortunately, the seasons are changing and its getting easier to do things.
From the comments
James Petrosky: Bonus fact no one wanted to know! Pretty much the only hair I have left on my whole body is on top of my head or in my dramatically depleted eyebrows. This fact occupies a lot of my brain time but never comes up and this feels like the place to share.
James Petrosky: Yes this includes eyelashes. Strongly recommend not removing your eyelashes, I get so much more stuff in my eyes now
James Petrosky: Another bonus fact! I adore sea horses. They're one of my favourite animals (most of my favourites are what I like to call "fat rounds" - beavers, wombats, capybara, not long delicate fishies) and I was super happy to be reminded of this statue
Yesterday I spoke with the surgical oncology team. The CT scan looks great, we're officially moving on to the surgical stage of treatment. While I'm waiting for a date, I'll keep doing chemotherapy (modified, we're discontinuing one of the drugs for now), I'm very excited for this development. For now, I'll have a lot of paperwork to do and a lot of anxiety to cope with, and there's a chance I'll be on chemotherapy longer at this stage than during the first stage, depending on how scheduling goes. But it's a new day, and I'm more sure now than before that the light at the end of the tunnel isn't an oncoming train.
From the comments
James Petrosky: I'm going to note again that this first surgery, a laparoscopy, is entirely to help decide if the full surgery is an option for me. If the cancer is growing in vital blood vessels or nerve clusters then that's the end for surgery. Making it this far is fantastic news, but the real hurdle is a good result on this first operation.
Twelve cycles is the number originally requested by the surgical team at Mt Sinai. Tomorrow I go for a CT scan to see how the cancer has faired the last three months. Saturday I speak with the team. I'll learn if the tumors have shrunk, about any possible spread, about the anomalies in my lungs that haven't yet changed over the course of treatment (these are almost certianly fine, but I'm an anxious person), and, hopefully, about the scheduling for my first surgical procedure.
I'm scheduled for a 13th cycle next week, but if the date is soon enough, it's possible that will be delayed. I don't think it's likely things will move that fast, but my medical oncologist is the one who put the idea in my head, so it isn't impossible.
It's been an exhausting six months, and an extremely painful nine before that, but right now I feel hopeful, that I've finally made up enough ground that I can be hopeful about this more aggressive phase of treatment.
Cycles are two weeks. Something isn't right. And that thing is my immune system. It's too weak to safely take another round of chemo right now, so my oncologist gave me a week off. Today is the longest I've been off it since September 15th.
This isn't entirely unprecedented, after cycle 6 I needed to get a shot to boost my neutrophil count. But it is frustrating, this was to be the last of my second round of chemo, I was supposed to get a CT scan to learn how the treatment has been going (rescheduled until the following week).
From the comments
James Petrosky: I'm doing well, taking extra precautions and keeping to myself. And honestly a bit of a break is nice, chemotherapy is no picnic.
Tomorrow is my 36th birthday. Today is six months, to the day, since I learned I had cancer. Almost exactly five months since I met my oncologist and learned how serious it was. Five months since I've been off work.
I'm hanging in there. I'm almost always a bit tired, and need a lot more rest than I used to. I'm frequently cold, and even though the apartment is a very comfortable 23C I always wear a sweater. Even if I had the energy for long walks, chemo does bad things to your digestive system and I just can't be that far from a washroom.
One more cycle until we move to the next stage. It's exciting, but I'm starting to build anxiety about major surgery, and if I'll even get it. But I'll keep doing one thing at a time until it's done.
From the comments
James Petrosky: Gang, I'm just so physically and mentally exhausted by this. I wish there was a way to take a vacation from it. But I know the pain would come right back, and that's no escape.
I'm pretty used to 'brain fog,' it's a common symptom of my more severe depressive episodes. The cancer/chemo related brain fog isn't worse, not really, and doesn't feel fundamentally different, except that it's constant. With depression, it goes away as my mood improves. But here? It doesn't care about mood. I spent a couple weeks hypomanic and foggy, which if you asked me a year ago I'd have said was impossible. I've noticed I've had to reread and rewrite more than normal, and that my focus is worse, too.
I'm told that I can expect to start to feel normal after I'm through with chemotherapy, which isn't happening soon, but I've only two regularly scheduled cycles left.
From the comments
Britta: dunno if you already follow Jacob Sharpe, but he's a very funny comedian who had brain cancer and makes fun of the "religious/positive" cancer posts here very well. He talks about how the sugar coating, "not today cancer!"/"keep calm and fight cancer" memes are well meaning but whitewash the reality of the experience. As someone who isn't religious, I thought you might particularly find this amusing.
"If God is making up this cancer war, and I have to fight -- he's bored, and he's an asshole."
James Petrosky: Britta R. Moline I'm in the middle of an actual play right now, but I'm adding this to the list
James Petrosky (7 months later): So I forgot to add this to my playlist, and only just rediscovered it just now. And yah know what? Its probably more enjoyable to me now that I'm doomed than it would have been while going through it.
Today was the day I finally took an electric cutter to the remainder of my long hair. I've half wanted to do it since November, but I liked the reminder of the long hair I once had. I've no future plans of ever getting it cut again, but I'll probably do another trim if it ever gets quite that uneven in length again.
James Petrosky:
- its really hard to trim your own hair. Doubly so without use of a mirror.
- it's a toque, not a beanie, if you must refer to it.
