Bizarre Body Happenings

So, the scab on my port removal incision has mostly fallen off (which is good) to reveal what looks like three pieces of white thread sticking out of my skin (which is freaky). Sutures? Maybe. Dissolvable? Hopefully. Very “nightmare before Christmas”, which is kinda badass, but still…deep breath, bandaid, calling the doc tomorrow to make sure this is something I shouldn’t worry about. If you want some insight into the day in-day out life of a cancer patient, here it is: bizarre, sometimes terrifying things happen to your body on a regular basis, which you have no control over. Fuck cancer.

Here’s the list from my days in frontline treatment:

-Tumor the size of cantaloupe growing on ovaries

-Fluid around lung and in abdomen, impeding normal breathing
*Thoracentesis (needle-guided fluid drainage–lots of these. I grew to look forward to, and rather enjoy them, because suffocating felt a lot worse than a big needle stuck in my back).

-Rod infection

-Bowel Blockage

-Emergency Ileostomy/mucus fistula
*intestine outside of body (in two places). poop exits through abdominal wall.
*occassional poop in mucus fistula, requiring digging out said poop with q tips. Intestines are very vascular, and bleed easily (who knew?) This activity usually resulted in blood dripping down my stomach. One time, right before my reversal surgery, I was standing in my apartment in NYC, digging poop out of my fistula, dripping blood…as you do. I laughed, because it occurred to me that anybody who just happened upon this scene would think it was a murder in progress.
*bag leaks, and subsequent poop baths. Poop that is still in the small intestine has a lot of stomach acid in it (who knew?). Burns skin when in contact with it. With bag leaks, that’s inevitable. Mercifully, I didn’t have any skin breakdown problems. After a big blowout, the skin on my stomach would be really sore, like a sunburn. If I left it alone for 3-4 days, it would get better by itself.
*loss of sleep. My ostomy was very active overnight, and I had to sleep with one eye open at all times, to avoid really yucky, middle of the night leaks and blowouts. Sometimes I succeeded at that, and sometimes I failed. Nothing quite like waking up in a pool of your own shit. Did you know that once shit’s been outside your body for a little while, it gets cold?

-Constant oozing of fluids through incision.

-daily lovanox injections in abdomen for 30 days after each of three surgeries–100 in total (heparin, to prevent blood clots)

*Hair loss,brown finger nails, barfing, fatigue, blurry vision, fevers, neuropathy, watering eyes, hoarseness, coughing, magnesium and potassium deficiencies, anemia (blood transfusions are crazy looking), dehydration (IV fluids always made me feel funky)

-Steroid Side Effects

-Neulasta Shot after every chemo cycle
side effects
*bone pain, flu-like symptoms

-Avastin Side Effects
*Nose bleeds, improper healing


-High Blood Pressure
When I was diagnosed, my Dad’s blood pressure suddenly got elevated, too. He jokes that it’s no surprise that we all suddenly had high blood pressure, given the circumstances.

-Hole in stomach, due to improper healing of incision
*subsequent further cutting open hole to aid healing (??) No anesthesia or numbing agent used.
*daily, then weekly cleaning and packing of wound
*stitch spitting

-pelvic abcess/fistula
*e coli infection
*IV antibiotics
*drenching river of puss tunnels out through hole in skin
*JP drain placed into pelvis through butt cheek. Stays in for 3 mos and requires twice daily flushing, weekly dressing changes, catheter changes, and abscessograms (twilight anesthesia). I never appreciated how we use our butt cheeks for almost everything: sitting, walking, standing, lying down, and gravity pulls them all sorts of directions. I had some degree of pain every single day, from that drain. Some days, it was more manageable, some days I could barely walk. I could only sit on the edge of hard seats, or cock-eyed on the unaffected butt cheek. Getting up from a seated position involved yelling and cursing. The drain bulb had to be safety pinned to my pants at all times, so it wouldn’t pull. Most of the time, I’d shudder at the thought of anybody touching it.

-Ilius, following 3rd surgery
*inability to eat or drink for almost a month
*lots and lots of barfing. My poor Dad was the one who was taking care of me after the third surgery, and he’s really squeamish. Did you know that bile is bright green? I didn’t, until I was vomiting cups of it up, at least once a day. When your digestive system is “asleep”, bile collects in your stomach, and doesn’t get moved through.

-wound infection
*drenching river of puss episode 2, pours out of hole poked by surgeon, into healing incision (apparently, so gross that my mom, who was my primary caregiver, and who had stoically dealt with 10 months worth of gross already, felt dizzy and needed to sit down. My eyes were closed, so I didn’t realize this
*hole used to drain said puss requires daily cleaning and packing, a process which is breathtakingly painful. The torture of having cotton ribbon stuffed into a hole in your stomach is almost Shakespearean.

-Twice weekly visits by visiting nurse for vitals and wound care

All of the above happened in the course of 10 months. All of the above was what happened IN BETWEEN massive surgeries and life-sucking chemo infusions. Additional, extraneous stuff. A lot of it was really, really painful or at least a figurative pain in the ass. When I wasn’t too sick to care, a lot of it was also really really scary. Relatively speaking, I was lucky. Side effects of treatment kill patients all the time. The sky’s the limit in terms of how bad things can get. This current issue with the port incision should be par for the course, right? NBD? I should be steely and accustomed and in love with the smell of pain in the morning, right? No, actually, I’m less stoic, and more terrified of pain than ever before. I didn’t expect there to even be minor issues with the port removal. Ugh. It never really ends…


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