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.
This one's a bit different. It isn't about surgical recovery (it's going very slow), nor about cancer treatment (I'm waiting for the 12th for my oncologist appointment), but it is about death and dying, something I imagine every cancer patient spends a lot of time thinking about, specifically it's about religious/philosophical beliefs surrounding death. So if that isn't something you can deal with right now, maybe go find some geese to watch or whatever else makes you happy. Also, please read the whole thing before commenting, I specifically do not want certain kinds of discussion.
Also, if you're reading this, you are not the one who did this1, nor are you likely to know the people who have. You've all been very respectful, and I really appriciate that.
I'm an essentially lifelong atheist. I'm secure in my beliefs and feel like I've given a fair shot to many of the competing systems out there. I think that most people reading this, atheist or one of the various sorts of theist, probably have as well. And, up until my cancer diagnosis, I've enjoyed discussions with reasonable theists (basically, if your denomination doesn't think I deserve eternal hell fire for being bisexual).
But that did change with the diagnosis. I spent the time I had exploring ideas and strengthening my own, now it is time to reap the comforts that come from such beliefs. In time, I'll get much more into this, but I believe that there is nothing after we die. We simply cease experiencing and existing. I get that this is a terrifying prospect to some, which is why I don't go around to palliative care patients and say things like this.
So, my question is, why do some Christians have the audacity to not return that respect? If praying for me gives you comfort, have at it, but I don't need to know your praying for my soul. I don't want to hear of heaven and hell, thoughts of annihilation bring me peace, bringing hell into the mix just gives me anxiety, not because I secretly know it's real (frankly, no one really knows any of this stuff), but because I grew up in a very Catholic town and some ideas osmos even if you never enter a church.
(I do know the answer, when you throw infinite punishment into the mix then any tactic can be justified to avoid that outcome. It's just that this version of Christian love is abhorrent to me. It doesn't threaten my beliefs, it can't because there's no argument to it, just an emotional appeal, but in the dark of the night, when the sads have set in (and they always do), it can force me to spend some of my precious few remaining moments in stress and anxiety, instead of in hard won peace and serenity)
So here's my request: do whatever feels right to you, pray, so rituals, pet cats, honk at geese. Help yourself feel better, and if you think there are powers in the universe which can help, then have at it. But only tell me that I'm in your thoughts, or that your praying for me (without adding more detail). Because it does mean a lot to me, but I'm fragile, and I want to hold onto the peace I've built over my unfortunately short adult life.
NOTE this is not an invitation to debate my beliefs, to say not all Christians (I know it isn't all Christians), or even really to roast the mystery people I'm vaguely talking about. I will answer good faith questions, though
I can noo longer guarantee this, but it seems unlikely it was you ↩
By now, last year, I had met with the surgeon who I had been referred to for abdominal pain. On the 30th I'd get the first CT scan, the one that missed or miss characterized everything, ultimately delaying treatment for a couple months.
Which doesn't matter. Those months would have only saved me pain (which would have been nice, obviously) but would not have changed any of the treatments or the outcomes, or anything else about my diagnosis. I'd long wondered if this was the case, or if these months were critical time lost.
Friends, I have read the surgical report for my unfortunate cytoreduction and HIPEC procedure, and it's doom was assured months before I ever sought medical attention for pain.
Going into the laparoscopic surgery a few weeks ago, we knew of a large (2.6x4.6x3.8 mm) goblet cell adenocarcenoma on the appendix, another infiltrating the umbilicus, which had been mostly destroyed by chemotherapy, and a bunch of small tumors on the peritoneum. The laparoscopic surgery found further small tumors on the small intestine and confirmed what the CT scans had indicated. All of this was extremely operable and I had genuine reason to believe I could be in the roughly 10% of patients who never have the cancer return, although I was still much more likely in the roughly 70-80% of people who get a good result from the surgery (this is where the prognosis of 5-10 years came from). For me, the hard part, the part where I'd get rejected, was in the lead up to the operation. Once I got onto the table, I was set.
The deep pelvic area, with its collection of renal and reproductive organs, is apparently very difficult to visualize through CT scans. Ultrasounds are better, but you need a reason to do an ultrasound, and they're still not perfect. And I'd even gone to a urologist, we did a cystocapy, and from the inside my urethra, prostate and bladder looked perfect.
But I still had a tumor growing there. It's infiltrated my rectum (no symptoms yet) prostate (restricting urethra some of the time, making urination difficult) and seminal ducts (a variety of sexual symptoms, none catestrophic). Possibly more. There was no way to cleanly and safely remove it. They tried. Which puts me in the roughly 10% of HIPEC patients who are found to be inoperable during the procedure. I've still not properly processed this fact.
One of the things that makes appendix cancers so dangerous is that you almost never find them on purpose, like you might with breasts or testicular cancer. A large number of cases are found during appendectomies (which is actually the treatment for stages 1-3). But if it doesn't happen to inflame the appendix, you'll go years, maybe even a decade, before its noticed. Which, for me, means there are no surgical options. There's only chemotherapy.
I don't know when I start again, apparently you heal your surgical wounds before you restart, and I don't know my prognosis, but I know it isn't 5-10 years. But I do know I'm still here, now, and intend to have a very good summer.
From the comments
James Petrosky: I missed the come back around - my doom was assured because the pain (naval, spread from appendix) and difficulty urinating (spread to prostate region) predate me asking for help by many months. By the time I had my first symptom, it was already too late for HIPEC. Sometimes we can do everything right and still lose. I'm still going to try and do it right, though, statistically that'll work out for most of us.
Ten days hospitalized. I'm back on solid foods as of this morning (although the order came down too late to save me from anything but jello for breakfast again) and I'm on track to be discharged tomorrow.
It's weird, but being here has been kind of like a vacation. Very slightly so. It didn't save me from thinking about my own health obsessively for two weeks, as I have for the most of the entire year before, but I was thinking about normal things, like healthy organ function, my nose and throat, and getting my bowels to work right. Yes, cancer is the reason I'm here, and yes, I'd much rather be fretting over the alternative reality where we played golf rules organ counting games and I always won, but I haven't thought much about that. But instead I've come up with increasingly elaborate and stupid ways of counting laps of the floor (always do them in sets of two, proper breaks after five sets, at least two proper breaks between meals, etc.), done some top tier people watching and enjoyed the view over University Avenue.
Being a cancer patient is a full time job, and this is the weirdest sort of break I can imagine from it while still being actively treated.
I have a copy of the surgical report. Tomorrow, I'll have an opportunity to speak to one of the surgeons who was in the room to clarify any details and ask any questions I might have. One of the big ones is what surgical options, if any, exist for me. I'll coach you all the exact way I've coached my family on the subject: there are likely none. Chemotherapy still exists, though, and I'm in high spirits. I'm excited to overshare about this report, but I need to speak to my surgeon, oncologist, and family before I do.
The next step is to temporarily move in with my parents, because I can't drive or carry groceries for the next month, until I've recovered enough from surgery to move back home. Hopefully, we start that 550km trip tomorrow.
One week hospitalized. I have no further information on the cancer for now.
I've learned that, pretty much what you'd expect for a bipolar person, if you give me as much morphine as I want, I will want way too much. I haven't been in pain since I woke up, but I was really not in pain for those first days. I don't even know when the epidural delivering it came out, even though I'd largely stopped using the on demand function by that point. I had a couple restful nights under it, and a couple with wild and crazy visions of the sort I cannot possibly explain (there are several hospitals right here and to heal and be discharged you must defeat all of their celestial forms? In an extremely literal kind of way)
I had a nasal-gastric tube in my nose all week. I know I said some pretty harsh things about them under opiates, and they are bad, but not nearly that bad. There's a 30cm long suture in my abdomen, and that is objectively way worse. The tube drains your stomach before your bowels have reengaged, so you aren't throwing up all the time. Which is another thing opiates make worse, but at least you barely remember.
For now, my recovery looks like most other major surgery recoveries. Because even though I did not get the procedure I wanted, I still got a procedure. That means a lot of nurses monitoring my bowel movements, and a lot of little walks around the floor to encourage the bowels along.
While I'm here I can have visitors, but since I barely have an idea where I am within Mt Sinai, I'll have to ask in the morning. But check in with the rules for visitors, and let me know your coming
From the comments
James Petrosky: I didn't want to post with the tube in, I thought it too gross, and if it has to go back in I'm canceling the invitation until it's gone again. This is apparently my limit of sharing.
Fucking morphine, I can't say never again but I hope never again
They found an inoperable tumor when they opened me up and were forced to cancel the surgery. I have not had the opportunity to speak with the surgeon yet, so I don't have the details. I'm recovering well, all things considered.
Also I no longer have a belly button (good riddance)
From the comments
James Petrosky: This probably worsens the prognosis, but I need to speak to the surgeon and my oncologist to know where I stand.
Months ago I expressed my distaste for the cancer as a battle or fight metaphor. It might represent some people well, especially those with stage 1 illness, but it doesn't reflect my experience. For me, cancer has been a seige. And today, friends, the relief forces have arrived, and we're going to do our damndest to break that seige. We done everything we can to ensure success, and now it's all in the hands of the fates.
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
