[cancer] Pain, discomfort and the discontents of the insulted body

I woke up this morning with my scars hurting and decided I wanted to make a post about the physicality of cancer, surgery and chemotherapy.

I suppose this is as much for my own benefit as anyone else’s, but this might be of interest to you if you’re a caregiver or relative, or if you’re writing about a character with cancer. Or if you’re on my journey, but in a different place than me. Also, I invite questions.

FYI, I’m focusing on somatic and sensory details, some of it may be medical or digestive TMI depending on your sensitivities and preferences.

First, a note about pain. Through this process, one thing I’ve learned at a very visceral level (speaking both literally and figuratively) is to make a very clear distinction between discomfort and pain. Outside of my various surgeries (two major and one minor so far), there has been almost no pain. Discomfort has reached epic proportions at times, and is essentially always with me these days.

When you go to the hospital they always ask you that goofy pain question. “On a scale of one to ten, how would you rate your pain?” The fifteen year old me would have rated a stubbed toe as a four or a five. Now it wouldn’t even make the scale. The twenty-five year old me who wiped out his bike and slammed all four funny bones at once had a different answer, but ultimately, that was just discomfort on a world-spanning scale, and it passed within the hour. True pain is an unmediated abdominal surgical wound, as I experienced in May of 2008, and that reset my one-to-ten scale profoundly.

In the spring of 2008, I presented at the OHSU ER with copious rectal bleeding. To be blunt, I was having diarrhea the color of red raspberries every fifteen to thirty minutes. I’ve talked before about the intake and medical processes, and the fact that I lost 25% of my blood supply internally over 15 hours due to the tumor ulcerating. It never hurt (which is one reason I spent about 5 hours in the ER waiting room while losing pints of blood). It was intensely uncomfortable, in the way that any extreme lower GI phenomenon can be. The fifteen year old me would have been howling that it hurt like crazy, though. Even before my cancer adventures, I’d had enough bicycle wrecks and other mishaps to change my definitions.

That all led to various misadventures which I’ve documented on this blog, but basically, once I was on IV fluids and painkillers, I didn’t feel a hell of a lot. The original tumor was removed via colonoscopy, but cancer cells were found in my colon wall and suspected in my lymph.

The pre-surgical consultation resulted in an unscheduled rectal exam, for which they did not have time to give me a Valium, and that was distinctly uncomfortable, to put it mildly, and more than a little weird, but also not painful. The implement they used resembled a caulking gun, and it sure felt like one going in, but stranger things happen in bars in NE Portland every weekend, and somehow everyone walks away intact.

Can’t tell you much about the abdominal surgery, other than to remark that I dissolved into shrieking, babbling terror while being rolled into the OR. It was not one of my finer moments as an adult human being. Getting the epidural placed prior to that dissolution of my character was a very strange experience. We had a discussion about the risks of that procedure which was sobering. The anesthesiologist then fingered my spine for a while, found the spot he wanted, injected some local anesthetic with a small needle, then slipped the epidural in.

Having had them twice (spring 2008 and autumn 2009) I can say I intensely dislike epidurals. I can feel the needle and the head behind it against my back no matter what position I’m in, and the line they tape up to my shoulder is a constant irritant. Again, not pain, but discomfort.

Post-operatively, things grew nightmarish. I’ve been told colon surgery is comparable to a bad c-section. We did open incision both because of the excess abdominal fat I carry due to my weight, and to provide the surgeons with the best possible access to the cancer site. They pretty much unpack your lower abdomen of whatever lives there, then go fiddling. In my case, 22 cm of sigmoid colon was removed, from the colo-rectal boundary up to the central section.

As I had been blessed with “an excessive and redundant colon”, per a rather witty radiologist (I took this to mean I was a long-winded asshole), they had a lot of material to work with. Unfortunately, even though I am a relatively big man (5’10”, 270# at the time of the surgery) I have an unusually small pelvis, and much of the surgery was done blind.

Among other things, I was given the interesting information that after they had sewn the remainder of my colon to my rectum, they pressure tested me to 150 psi to see if anything leaked.

The nightmare wasn’t the surgery, it was the recovery. Even with the epidural pumping liquid Dilaudid into me like motor oil being poured into a 1973 MGB, I was miserable. Again, not so much pain as deep, deep discomfort. My GI was completely shut down for obvious reasons. This leaves one with a deep ache inside, like a fist clenched around the gut. My entire body was out of whack from the anesthesia, to which I have some idiosyncratic reactions. I believe the issue is that I’m fairly drug resistant, so it takes a lot of stuff to put me all the way under. Then I have to get back out of it. Every time I’ve ever had surgery in my life, my recovery time from the anesthesia has been 2x to 4x what I’ve been advised.

This is where I discovered pain. After two or three days, the attending wanted me off the epidural and onto oral pain killers, so they could prepare me for discharge to convalesce at home. They put me on Oxycontin. In my case, that turns out to be a fine painkiller, but it makes me higher than a kite, and I sweat like Old Man River. I was trying to dance in my bed, singing away, and generally having a fine time.

Medical science swiftly and correctly deemed this to be counterproductive.

I was prescribed a single dose of oral Dilaudid, while the epidural remained installed but inactive. The day shift went home. The oral Dilaudid began to wear off. My chart had no orders for further painkillers, because the day shift docs had wanted to be sure I wasn’t going to react negatively to the oral Dilaudid. The night shift doctor didn’t want to interfere with the existing orders. As my one dose of oral Dilaudid wore off, I went from discomfort to mild pain to the screaming pain of an abdominal surgical wound, unmediated by any painkillers whatsoever.

Ten had a new definition on the pain scale. Raw, red agony from an eleven inch incision in my gut, dislocated organs, and a new suture in my colon. Not to mention the efforts of my GI to restart. I’m talking shoot-me-now pain. The night doctor was a complete chickenshit and wouldn’t even come see me, but kept telling the nurse she couldn’t override the day doctor’s orders. My family, there as my medical advocates, were going nuts. So was the nurse. I was screaming myself hoarse. The nurse finally called the day doctor at home (probably at some risk to her career), waking him up to get him to prescribe further doses of the oral Dilaudid.

It took them a day to stabilize me from the pain crash, which probably kept me in the hospital an extra day. And that hurt in ways that still make me wince to think about, two years later.

The other ugly thing that happened was when the nurse came to remove my neck line. I’d had three IV points in my arm, the epidural in my back, the bladder catheter in my urethra (ie, up my cock) and this metal tube in my neck. She tried to extract it and got stuck, because apparently my skin had begun to grow over the sutures. Unfortunately she got stuck partway through the procedure, and couldn’t step away to go for assistance or re-approach. She wound up digging, and cursing under her breath. From my point of view, that was roughly the equivalent of being stabbed in the neck, as we were doing this without local anesthetic. I would say the pain spiked to a 9, about comparable to the pain crash of a few days earlier, but it only lasted a couple of minutes instead of several hours.

The recovery process from abdominal surgery is pretty brutal, simply because all the muscles you use to roll over, sit up or stand have been sliced open, then sewn back together. For a while it took two people to get me out of bed. But the weirdest piece was the ride home. Normally all your organs are packed together in a pretty stable way. The body kind of glues it all together. When your organs have been unpacked for surgery, it takes them about a month to become stable again. On the ride home, every time we turned a corner, my organs were subject to Newton’s Laws, and being essentially detached from their environment, attempted briefly to continue moving in a straight line even though the outside of my body was cornering with the car.

It is one of the weirdest sensations I’ve ever experienced. Not painful, not even discomfort in the medical sense, just freaky. One’s guts don’t normally communicate their somatic experiences directly to one’s consciousness. I’ve been told that women who’ve had c-sections experience similar sensations riding in cars.

As for crossing railroad tracks… Oh. My. God. Toad-in-a-blender.

I did recover from all that, though the aching in my abdominal scar continues to this day. I know from the PET scans of last summer and fall that the abdominal incision continues to actively heal.

The surgery in 2009 was a completely different experience. It was a far less drastic invasion of my body, for one thing, though not much less painful for that. Where in May, 2008 I underwent a partial colectomy, what under went in November, 2009 was a partial thoracectomy. They went in between my third and fourth left ribs, excised a portion of my left lung about the size of a Dorito, taking with it a metastatic tumor about the size of an olive. The surgeon then examined my entire lung visually and tactilely to ensure that no other anomalous masses existed, and removed about a dozen small, calcified masses which biopsied neutral. (He eventually suggested I’d swallowed too much snot over the years.)

When I came around post-operatively, I had a drainage tube in my left chest, along with a horizontal incision about four or five inches long. Ie, the size of a surgeon’s hand. The drainage tube was perhaps half an inch in diameter, and resembled aquarium tubing. It felt very strange coiled around inside my chest. (The point of the tube was to drain my pleural cavity so I didn’t come down with pleurisy or some opportunistic infection as a result of the various surgical breaches.) I was astonishingly short of breath, but my lung didn’t hurt. Felt weird, with the lower lobes partially collapsed from surgery, but not painful.

My ribs were another matter entirely. Nothing in this process ever approached the unmediated pain of the abdominal surgery, but they surely ached. Oddly, much of the pain was referred to each anchor point of the rib — sternum and spine — where the rib’s nerve trunk was also anchored, so I went around feeling like I’d been shot through with an arrow. Even now, seven or eight months after the surgery, I have a low-grade version of that feeling fairly often, and when the serious aching kicks in, it freshens up nicely.

I spent much of my recovery period worrying about the extraction of the bladder catheter and the chest tube. I probably detest the bladder catheter more than any other aspect of medical care, as it makes me feel like I’ve been kicked in the nuts the entire time I’m using it. Having that thing yanked out through my urethra (ie, slithering down the length of my cock) is one of the most singularly unpleasant sensations I’ve ever experienced.

Having the chest tube pulled out was a similar sensation, except extending across my entire left chest. When the doctor removed the tube, I was amazed to discover there had been about twelve or fifteen inches of it inside me. It was like having a small animal crawl swiftly through my chest, then leap out the hole in my skin.

Nothing had hurt nearly so much since then. Chemotherapy is many, many things, but I believe I’ve only been in pain once or twice, and that connected to the hijinks of a few sessions ago when my infusion port had moved out of place and they had to go fishing with the pointy end. Not to mention the delight of having an accidental intramuscular injection of saline when they missed the port. That creates a brief sensation of burning pain, followed by an ache. We have since developed a new protocol for inserting my needle which avoids such funnery.

The chemo experience itself I’ve documented pretty extensively, but it’s entirely a drug trip, and doesn’t invoke somatic pain. Some of the side effects get pretty damned somatic, as discussed, and in fact I developed a new side effect yesterday, when the soles of my feet began to spasm. Mostly, though, the side effects have to do with my systemic health — sleep, digestion, fatigue, etc.

I have arrived at an intimate personal relationship with my scars. Ever since the abdominal surgery, the belly scar has served as a sort of idiot light. When it begins to ache, that’s time for me to stop whatever I’m doing and get some sleep. Now, on chemo, one of my fatigue signals is when the chest scars begin to ache. Unfortunately, these past few weeks the fatigue has been so deep that most days (including today) I wake up with the chest scars aching. As I write this, the time is about 7:15 am, I’ve been up for three hours after over nine hours of solid sleep, and my chest scars ache, along with the shot-with-an-arrow sensation. My abdominal scar tingles, but that’s probably the power of suggestion given what I’m writing about. However, my educated guess is that by midday it will be complaining for real.

That’s a terribly long disquisition on medical and somatic experiences. If you read it all the way through thank you for hanging in there. Please feel free to ask any questions you want about my cancer experiences, or the pain, or the headspace. I’d like to moderate comments in case someone wants to ask a personal or medical question they don’t want broadcast to the blogosphere, but so far I can’t figure out how to do that in WordPress. My LiveJournal cross-post is moderated, however.

25 thoughts on “[cancer] Pain, discomfort and the discontents of the insulted body

  1. Nalo says:

    Thanks, Jay. I’m so sorry that this is what you’re going/have gone through. If it’s any consolation, it was helpful to me to read; a sweetie of mine is recovering from abdominal surgery for the hernia resulting from falling on a sharpened stake.

    1. Jay says:

      Pardon my Klatchian, but holy crap that sounds awful. May they be well.

  2. pelican says:

    That was intensely helpful to read and I am incredibly sorry about your first post-surgical experience … and grateful to your nurse who woke up your first doc and got you some pain control.

    Leaving post-surgical patients without pain relief … that’s supposed to be a never event, for sure.

    1. Jay says:

      Yes, it was pretty bizarre. The nurse was frantic, and the night doctor was literally hiding. As I understand the nuts and bolts of the problem, it came down to a junior doctor being unwilling to write orders contradicting those left by a senior doctor whose case it was. Even when the orders were patently flawed. So it was hospital politics, essentially.

  3. Nalo says:

    He had some horrible moments. I’m glad to have the term “pain crash” to add to my vocab. to describe what was happening the three days they left him without adequate pain control when the site got infected post surgery. But he finally seems most of the way to healed now. May you be so soon.

    1. Jay says:

      Yeah, pain isn’t really the issue in my life these days. Fatigue, epically so, but that’s a different kettle of fish.

    2. Jay says:

      And I’m glad he’s mostly back to health and (hopefully) some physical improvement.

  4. Nalo says:

    The. Doctor. Was. Hiding. Oh, my god.

  5. pelican says:

    Yeah … but, by the time you’re a resident, you’re supposed to have grown a big enough pair to be able to actually take care of a patient’s basic needs without someone holding your hand and giving you specific permission to Do Your Job.

    I hope Dr. Chickenshit self-selects into spending his days giving botox shots at the mall.

    As a further comment on the pain/discomfort dichotomy, I came home one time to find my SO lying in bed, moaning, where he had been, doing just that, for the three days I’d been gone. He was gray and in- to my mind- severe abdominal pain. So, I scoop him up, and off to the ED, under protest … I get him through the door and we see the triage nurse. When asked, his pain is a “four.” I go ballistic and am tempted to administer a sharp slap, and then I start to sputter “he’s gray, he’s been like this for three days, his BP is through the roof, his fever’s 102, just LOOK at him!”

    We go straight back and start getting the GI emergency dealt with. Once there’s a little downtime, I start querying about the pain of four … his ten was the time he dislocated his hip surfing on a particularly rough day, was washed in without his board, and then was eventually basket carried 100 yards up the beach & rocks by the paramedics & some of his fellow surfers. Okay, yeah … that’s a 10.

  6. This is a great post, and especially great because lines like “As for crossing railroad tracks… Oh. My. God. Toad-in-a-blender.” make me laugh out loud while I’m feeling awful you had to go through this.

  7. Amy Thomson says:

    That was beautifully written and very painfully clear. Thank you, Jay. I’ve been reading the cancer portion of your blog with extra attention, in part because you’re a friend and I worry about you. But I also read it because you write so compellingly and clearly about what’s happening to you. I’m learning so much about the nature of chemotherapy. Thank you for that. It may save my life/help me make better choices/avoid pain, someday in the future.

  8. Laurie Mann says:

    Chronic pain is a pain in more ways than one. As Amy said, your post was beautifully written and painfully clear.

    I’m guessing intestinal surgery is much harder on the system than abdominal surgery that avoids cutting into them. I’ve had ovarian cysts removed twice (big cuts, not laparoscapies either time). I got over both surgeries in a couple of days, with only minor pain after about a week.

  9. Wow. I am SO glad for that nurse who called the day doctor – and I hope that night doctor learned a lesson from this, though I doubt it.

  10. Kathryn says:

    Yes, not really, yes, no, ABSOLUTELY!

    Yes, I am moderate about my pain values, but I do know 10 (screaming, crying, cursing, running out of oxygen). If it is not that, it’s not a 10. I did scream to wake the dead when they tried to give me a barium enema in a rectum that was basically shut down. I am sensitive to opiates and know I could easily be addicted, so I refused the dilaudid after surgery and just kept with my every 10 minutes of morphine until I fell back on my old friend Vicodin once or twice. I always had access to more than enough pain killers which I tried to forgo as much as possible.

    Not really. I was not screaming as I went into surgery as I was exhausted and in some pain, but I have to admit that that was the one time during this ordeal that I was truly terrified. I knew I could die in that room. The most amazing moment of my life was waking up in the recovery room. Groggy, disoriented and full of tubes, but AMAZED that I was still alive.

    Yes, it probably is like a C-section. Since they were also removing my uterus and other female spare parts along with the rectal cancer I have a huge zig zag scar from two different surgeons (your is much prettier). I had drippage from it for over a month.

    No, I do not have an excessively long colon, so I got a colonostomy. Yes, I now wear my rectum on the outside. Which has it’s own humorous stories if you love those that involve acute embarrassment and endless cleanup.

    ABSOLUTELY!!!! “The recovery process from abdominal surgery is pretty brutal, simply because all the muscles you use to roll over, sit up or stand have been sliced open, then sewn back together.” I couldn’t imagine how weak and dependent I was. The most embarrassing moment was falling off a step between the reading area (where I was sleeping upright in a chair) and the bed at 3 am. I had to yell to wake up my husband so he could get me into bed. I felt like a beetle on its back with those skinny legs waving frantically in the air. And I HATED sleeping on my back. I am a side sleeper. I never got enough sleep until four weeks after surgery when I could gingerly roll over on my side sometimes.

    There is a big bump at the end of our driveway. I almost lost it the first time my husband drove over it. No matter how slowly he went, it still was more uncomfortable than hanging upsidedown in a carnival ride.

    No, I have no surgery or scar pain, but I agree that having a ten inch tube pulled out of you is uniquely different in the scale of things that have happened to you in your life, but removing the gastric tube from my nose was more painful (especially when they said they might have to put it back!) Mine was a bladder line to drain blood from a right kidney that was smashed to the side by the peritonitis filling every particle of my interior cavities. The stent it was attached to is still there and now causing sharp and unexpected urinary track pain. It will be removed laproscopically on the 8th.

    Compared to all this, cancer treatment is not painful. It just has its own debilitations and extreme disadvantages. I wish that I knew that ANY of this therapy is actually doing some good.

    1. Jay says:

      I had a gastric tube for about four hours back when they were first running down my issues, and it was in about 1/8″ too deep. That was intensely uncomfortable. Unfortunately, this means I can imagine some of your experience. Yeow. Sympathies.

      And yes, knowing whether it’s going to do any good is a big part of mystery. In my case, the only affirmative results will be if we fail.

      1. Kathryn says:

        After thinking about this wonderful post a great deal, another thought crossed my mind.

        Everyone has been sick at one time in their life. It might have been a cold, the flu, a broken bone, or some other more serious incident. But in most every case EXCEPT cancer, after the initial incident, slowly but surely you get better over time. There may be setbacks, but the virus is conquered and the bone knits. You exercise, you eat better, and you heal. But cancer is a spiral of ever increasing hell. You keep doing it to get better in the long, long run, but you know it will get worse before it gets better. This is not a flu you can conquer in two weeks. Treatment will last six weeks, six months, a year. Treatment will not make you feel better. Some days it seems it will never end. Oncologists watch you to make sure you don’t die before the cancer does, but they can give no promises.

  11. Thank you for the long summary. I’m due for a colonoscopy in July, and I’m not looking forward to it, but at least my risks of colon cancer are fairly normal.

    1. Jay says:

      You guys have had enough to deal with already…

  12. Ellen Eades says:

    Yes. The *only* time I’ve been in pain bad enough to scream uncontrollably was when the midwife examined the placenta post-delivery, determined that there was a bit still inside, and had to go fishing for it. This was a home delivery, so no anesthesia. The difference between a midwife’s hand in your vagina, say during a regular women’s health exam, and a midwife’s hand going past your dilated cervix and into your recently delivered uterus to feel for and try to scrape stuck placenta off its lining is indescribable, but I have never had fireworks of psychedelic agony shooting off in my brain before or since. There is a photograph the doula took of me clinging to my partner and screaming my head off to remind me, and every time I look at it I shudder. Still, that was probably three minutes at most.

  13. Back a few years ago, my wife was transferred to an extended-care facility following surgery.

    Hilde’s had severe rheumatoid arthritis for over forty years, so she regularly takes painkillers strong enough to drop a healthy person in their tracks. The nursing staff at the facility told her they’d give her her nighttime painkillers after dinner.

    They didn’t. After an hour or so, she reminded them, and was told the painkillers would be “Soon”. And the same “Soon” an hour after that, and the hour after that, while her pain got worse, and worse, and worse.

    She finally got her pain meds a bit after 3:00 AM. How did that happen?

    When she was told “Soon” again at 3:00 AM, she asked for a phone…

    …and called 911. The 911 people got ahold of the hospital administrator, at her home, who then came down Wrath-of-God like on the nursing staff, who finally gave my wife her pain pills.

    So, in situations like that, the best method to address it seems to be 1) wake up the staff’s boss, and 2) do it in a way local news stations would LOVE to hear about and pass on.

    1. Jay says:

      Wow, what a story. Good on her for having some serious gumption. I hope conditions improved.

      1. A few hours after she finally got her pain meds, she called me at home and said “Get me out of here, NOW.” So I took some emergency leave from work, brought her home, and took care of her there myself for about a week, until she didn’t need as much heavy physical assistance and her regular daytime caregiver could take over again.

        (Over the years, and about 25 surgeries, I’ve picked up a fair amount about nursing and caregiving.)

        When you grow up with an alcoholic and occasionally abusive father, you become either a Victim or a Fighter. Hilde became a Fighter. (Literally. She never worried about schoolyard bullies in grade school. She was the schoolyard bully.)

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