Still no cancer here!
CEA as of today: 2.3. Less than 5 is normal.
Professor of Indeterminate Studies
Let me quote my oncologist:
I reviewed your CT scan of the chest, abdomen and pelvis done on 3/28/2016, it shows no new suspicious findings, no evidence of recurrence of cancer noted and it is quite encouraging good result.
I’m starting to think I might actually pull this off. I’ve had no evidence of disease for 18 months, and have made it to 26 months after diagnosis. The magic number is 60 months: at that point the doctors shrug and admit they have no idea what happens next. I’m well on my way there!
Whatever else happens, I get to do all the things I’m planning for this spring and summer. Can anyone say Hamilton?
I started this for twitter, but it turned out to be too long. I kept the format, though.
Two years ago this week I was in the midst of all sorts of invasive and terrifying tests, resulting in a diagnosis of Stage IV colon cancer.
I was 43. I didn’t think I would have two years.
After chemo, radiation, surgery, and more chemo, I appear to be healthy.
Last spring, my mother died of cancer after a 15-year respite. The last time I saw her was when she helped me post-surgery.
She died while I was hooked to the chemo pump. Her memorial was a week and a half later, when I was recovered enough to manage it.
I drove home on Sunday, and started the next chemo session on Monday.
I already knew this week was going to be complicated. I’m thrilled I got two years, and probably more.
I’m sad my mother can’t celebrate with me, and I with her. “Sad” seems such a short and inadequate word.
I’m angry that I had to endure this at all.
I started the day by checking twitter at 4am and discovering David Bowie had died. He knew he was dying, he’d known for 18 months.
David Bowie chose to spend that time making his last album. He knew what he was doing, and he did it the way he wanted to.
I’ve had six more months than he did.
I don’t know whether to go back to bed, or to work my ass off.
It’s been six months since I finished chemo, and a year since I got out of the hospital post-surgery. I’m doing very well physically: walking, doing yoga, no longer exhausted all the time. I had two fairly demanding vacations back-to-back, Viable Paradise and World Fantasy, and enjoyed them both, and worked and played hard. I have long-term and possibly permanent consequences from some of the treatments, but overall, not too bad.
As my endurance and abilities recover, though, the mental side effects become ever more frustrating. I should be better, dammit! I was looking at my to-read pile, and bemoaning the little writing I’m getting done, and the trouble I’m having doing science… and all the time I’ve spent in the last year doing online jigsaw puzzles rather than anything more fulfilling.
And then I figured it out: whether from stress or chemo brain, or most likely a combination of the two, I’ve spent my time doing things that don’t require a through-line. The number of long novels I’ve put down rather than keep track of complex plots. The time at work spent processing GIS data, which is useful but not mentally demanding. The not-writing. The jigsaw puzzles, which don’t require keeping track of things. I’m not doing things that need sustained attention or complex memory.
I’m using notebooks and online calendars to manage most of the daily business of life and work, and that’s been largely effective. I forget what I got up for, or fumble for words, or can’t spell them when I know what they are, but those are slowly improving. But the sustained attention/through-line capability hasn’t been improving as quickly as the physical capability has, and it’s much harder to compensate for.
That capability is incredibly important to my understanding of who I am. I’m the person who reads a lot of books, does insightful science, engages with the world in complex and extended ways. That’s not what I’m doing right now, and it is deeply frustrating. It terrifies me that those abilities may not entirely come back, though I imagine I will develop further coping skills.
I have a really hard time distinguishing between being patient with myself and being lazy, or not pushing myself hard enough. That line has never been clear to me, and even less so now. Productivity is also an essential component of my self-image, and I’ve become someone who starts a million things but doesn’t finish any of them. My idea-generating ability came back pretty quickly (and losing that was incredibly traumatic, especially the first time; less so the second time I started chemo because I knew it would come back), but my ability to follow through on those ideas is just not there.
I want to write this novel, and read a bunch of complex, delightful books, and get a bunch of science done, and make beautiful things. Instead I’m spending a lot of time on twitter and doing those bloody jigsaw puzzles. I don’t know what the solution is, and fear there may not be one. Better and more thorough note-taking, to make up for the things my brain can’t do? Breaking things into ever-smaller chunks? Cutting back, and thinning my schedule so I can use what focus I do have on the most important things? Or is my focus rejuvenated by switching to a different project? I need to try a bunch more things and see.
And then there’s the fear of everyone who’s been treated for cancer: am I even going to live long enough for any of this to matter? Or am I just going to leave a bunch of unfinished projects? I’m healthy right now, and want to make the most of that, but the fear is always there.
A year ago today I was in the hospital and two surgeons were removing bits of this and that. A little colon, a little liver. They did a fine job, and between them, the chemo, and the radiation, I have had no evidence of cancer for an entire year.
A year, people. That’s an awfully good start. I’ve made it 22 months after diagnosis, a full year after surgery with no recurrence, and I’ve been done with treatment for over four months.
I’m not completely recovered, and some bits may never heal. I’m low on emotional and physical reserves, and if I sit still too long I stiffen up and feel like I’m 87. Everything is complicated, and slow. Still, yesterday I worked a full day doing science, saw friends, finished a volunteer project, and walked 6.3 miles. My CEA blood test is normal, and this week’s CT scan report was full of words like “unremarkable” and “normal.” I’ve never been so happy to be boring.
For today, let’s just go with “good fucking riddance.”
I started the day with an unpleasant medical procedure with unpleasant results. Nothing life-threatening, and only life-changing in the long-term sense, part of the fall-out from ensuring the long-term.
The up-side of radiation before surgery is that it decreases the risk of tumor recurrence.
The down-side is that it interferes with healing.
Post-surgery I ended up with a horrid infection and abscess. It’s hard to tell for sure whether the abscess caused the colon join to not heal properly, or the incomplete join caused the abscess, and it doesn’t really matter. The important bits are that there’s a gap in the colon join where the tumor was removed, and the abscess also caused a fistula in my vaginal wall. This isn’t an immediate problem in and of itself, because I have an ileostomy so the colon isn’t being used for anything.
This is “wait and see” kind of stuff. There was a possibility it will heal on its own, even after the radiation, and everything else needs to heal completely before it can be addressed anyway.
But since it’s somehow been almost a year, it was time to take a look. I started the day with a very thorough rectal and vaginal exam (and managed to not ask my surgeon how many people make “and you didn’t even buy me dinner” jokes). The colon join is not closed, and the vaginal fistula is not healed. Instead, they’re connected to each other.
The options are:
1. Completely redo the colon join: take out a new small section and reattach everything, hoping it works this time. It won’t be as serious, because there won’t be a liver component, but this is still substantial surgery. After that heals, if it does, my ostomy would be reversed. The original join is fairly low in the colon, though, which means that a new join would take up pretty much all the available space. Because of that, there’s a substantial chance I may not regain proper bowel function, and the certainty that I will have a long period of incontinence and difficulty. My surgeon thinks that because I’m young and healthy it will probably recover, but she also said that she would re-evaluate a year after surgery and put the ostomy back if it didn’t work.
2. Do nothing. I can keep the ostomy forever. There are no long-term health consequences to leaving a gap in a non-functional colon. The down-side is that there is no way to fix just the vagina. Surgeon says that because of the effects of the radiation on those tissues, there’s effectively a 0% chance of any repairs taking.
Right now I have an ileostomy, which is very high up in the digestive system, which limits nutrient and water absorption and requires frequent emptying. If I go with option 2, she could move it lower down, to a colostomy, which is an easier long-term prospect.
Right now I’m active and feel good, and can do all the things. I’m working, traveling, enjoying my time. I’m not enthusiastic about the prospect of another fairly major surgery and concomitant recovery period, and really not enthusiastic about the idea of an extended period of being chained to a bathroom while my bowel recovers. Assuming the second surgery even works, of course.
I and Blorp the Ostomy are getting along well. I even spent a week camping with no major issues. (I will blog about Blorp eventually.) I’m basically put together with plastic bags and sticky tape, and it is inconvenient, but not that bad.
Here’s the part where I talk about sex. If you don’t want to read that, time to get off the elevator.
The elephant in the room here is vaginal function: it would be kind of nice to be able to have penetrative sex, and even oral sex is problematic because that fistula leaks. There are alternatives; there are always alternatives, but still. Pelvic radiation also causes sexual issues in women: the vaginal tissues tend to be much less moist and elastic, so it’s possible that penetrative sex would be painful regardless.
I don’t have to make a decision now. Since one of the options is “do nothing” I can take that option for now and make a considered decision in a few months, or even longer. I’ve always known there were consequences to cancer treatment, and that problems with either or both bowel and sexual function were possibilities, but this is still a frustrating development.
Sasquan was a blast! I spent time with old friends and new friends, including several folks who have been friends for a long time but I’d never met in person, including Best Roomie. Everyone had fun at the reading, though post-apocalyptic cats were clearly trumped by spiders. The Viable Paradise party was great, and Steph and I ended up hosting a snarky and alcohol-laden Hugos party with the leftovers. It still boggles me sometimes that I’ve become the kind of person who can throw a party at WorldCon and have people show up. Lots of people!
I’ve been all over the place, Portland, Pennsic, Spokane, and it’s been great. My physical health is excellent and steadily improving as I get farther away from chemo (four months!) and surgery (almost a year!). My CEA is still normal. I’m walking to work sometimes (Monday was the first day I’ve done so since 2013) and kayaking. I’ve been doing yoga for months, trying to recover some strength and flexibility, and I’m contemplating gym membership or home weight-lifting.
But I am so fucking tired, mentally and emotionally. So tired. I can do all the things physically, but how do I do all the things? How do I do any of them? I haven’t dealt with any of the paperwork from my mother’s death (I have time; this is not urgent), my house is a disaster, I’m just barely not failing my annual review at work. The bills are paid and the cats are fed, but that’s about it. Adulting? Not happening. I haven’t been there for friends either, which makes me sad.
I feel like I should be a cheery TV special. “I beat cancer sunshine daisies joy laughter sparkles unicorns.” But it’s harder than that, deeper and more complicated. Slower, too.
Followup this morning with my surgeon.
The short version is that I will probably need a couple of minor surgeries to reassemble things disconnected or broken by the big surgery and subsequent infection, but I knew that. Nothing is urgent, so they’re all going to wait until fall, after summer traveling and fun are over*.
Surgeon: So how is everything going?
Me: Pretty well. I finished chemo the first week of May, and am now trying to get my endurance and strength back. It’s slow.
Surgeon: You’re still recovering a whole lot faster than most people.
Me: Still not fast enough.
From there, various kinds of poking and prodding. (Colon surgeon: you figure it out.) My scar looks good, except for the few inches in the middle that decided to become hypertrophic. That’s the bit that itches and pulls and hurts and annoys the piss out of me most of the time. I massage it and oil it twice a day, and it will probably improve over time. I don’t really care that it’s ugly, just that it’s annoying.
So yeah, things are things. I’m walking the dog regularly, doing yoga (crankily, because I have so little flexibility now***), kayaking, and started strength training last week. I’m easily tired out, though, and cranky a lot. That’s not unreasonable, but still frustrating. My brain is recovering, but also not at full speed yet. (That had BETTER BE a yet; I miss my brain!) Lots of post-its can cover for cranial incapacity, but not all aspects of it.
And I would just like to say that in the winter, hot flashes mean that my toes get warm. In the summer? Insomnia and a lot of sweat. Yet another annoying consequence of cancer treatment, though other aspects of radiation-induced menopause are quite all right.
I rewarded myself for visiting the surgeon with a lunch of sushi**** and blogging, but the salmon is gone so it’s time to get back to work.
*Flying with an ostomy**: any of you done it? Google suggests that it’s pretty straightforward.
**Someday I will write an ostomy post, and you all will be fascinated and/or disgusted.
***Radiation damage, which may or may not completely recover, and surgical scarring, ditto.
****No sushi during chemo, but it’s been six weeks so I’m sure I can eat raw fishies again.
This is harder than I expected.
I’m done with treatment, and it was successful. [insert cheering here] That’s the best of all possible things to follow a cancer diagnosis with.
But it’s still hard. I’ve done little for the last sixteen months but focus on survival: staying alive, getting through chemotherapy and radiation and surgery and more chemo, doing the bare minimum at everything else. Now I’m free of all that, and I have to pick up all those balls again. My research career is a mess, my house is a disaster area, my body is weak and wobbly. I feel like I’ve forgotten how to do all the things that make a successful and happy adult, not just an alive one. (I realize that latter is no mean achievement.)
I remember being active and doing things, writing, weaving, actual research, but in a vague, unfocused way: with a sense of wonder that anyone ever manages those things, and a general disbelief that I could manage those things again. It’s rather like being depressed, though I’m not. I’m tired, overwhelmed, and still recovering. It’s only been three weeks since I finished chemo, after sixteen months of abuse. I know it will take time to recover and remember how to juggle.
I’m winning, but victory isn’t easy.