April Update

It’s been a while since the last update.

If you’re reading this, I’m already wearing sweatpants or shorts. Unless I’m in bed or showering. My t-shirt is either the one I slept in last night, or the one I’ll sleep in tonight. Solid chance that it’s both. Socks are likely pulling another multi-day shift. Disposable hospital underwear, loose elastic waistband.

Sweatpants are my uniform due to the dressing over the fistula. The bag extends down to my waistline. Pants that interfere with that interface cause the dressing to fail faster. Days when the dressing fails are not good. Sweatpants and athletic shorts are loose enough to not cause issues.

Connection between the PICC line in my left arm to the TPN pump happens at around 8PM each evening. It takes 12 hours to pump the 2.8 liters of nutrition into my veins. Can’t change a shirt while the pump is connected, as the sleeve can’t get past the PICC. TPN connection time marks the end of the productive portion of my day.

Until very recently, most of my waking hours consisted of moving very cautiously so as to not disturb the wound bag on my stomach. The bags were wearing out after about 2-1/2 days. ‘Wearing out’ means that the stomach acid from my fistula soaks against my skin. This hurts the skin. It also eats away at the bag until the stomach acid starts to escape at the seams. Once that starts, there’s no patching the dressing - You need a whole new bag change. That takes 2 people about an hour.

Karen had been nice enough to help me change the dressing on the weekends so I could make it to Tuesdays and Fridays (when my home health nurse Keely visits). The dressing change routine wasn’t getting any easier. Reaching out to wound nurses at Duke. On YouTube. Over Facebook. All were sympathetic and tried to help. Keely was keen to allow for some experimentation. We did find some products (especially 3M Cavillon Advanced Skin Care) that helped. Still, dressing lifetime and skin condition continued to deteriorate through Jan/Feb/March. Karen often returned home to find me in my easy chair, trying to minimize movement so the dressing could make it one more day.

The engineer in me made some attempts at working out some kind of solution. Tried some 3d printed shields that went inside the bag to guide the fistula output. Printed with a flexible plastic. Looked like a large plastic spider. Completely ineffective.

Then I gave a try with an ostomy belt from Amazon combined with a 3D printed brace. Some success! Replaced the flimsy stretch belt with a solid canvas D-ring belt and a brace with vertical supports. Feels good - Lots of support through my open abdomen. How well does it work?

I went from sitting still to playing Henry one-on-one basketball. He beats me, but at least I’m out of the house. No more leaks, and Keely says my skin looks better than it ever has. My quality of life has doubled. Granted, it is still low - But it is 2x of what it was just a month ago.

You can take a look at what the brace looks like here: https://www.printables.com/model/449956-wound-bag-brace - Be warned that if you click around enough on that page, you’ll find a photo of the brace on my abdomen.

Here’s where people tell me I need to patent the brace. Unlikely. There are probably about 30 people in the US who need a brace like this, and they each only need one. It’s $3 worth of plastic. I’ve let some ostomy nurses know about how effective it is. Hopefully we can get one to someone else who needs one.

Surgery?

Surgery to fix the fistula is slated for August. The reason for the delay is that we need to wait for the scar tissue on the small bowel to relax somewhat. The fistula takedown surgery is already complex enough - Fighting scar tissue increases the odds of forming another fistula. Thus incurring another 1 year wait for additional surgery. Please no.

The takedown surgery - Imagine a coiled garden hose with holes in it.They’ll uncoil the hose, figure out where the holes are, and cut-and-rejoin the locations with the holes. Each cut and rejoin is called an anastomosis. I asked the surgeon how many I’ll need - ‘Could be one, could be 6’.

It’s an all day surgery with at least a gi surgeron and a plastic surgeon. With recovery, it is a 5 to 10 day hospital stay. After a 40 day stay last year, 5 to 10 sounds like a spa visit.

Eating?

I’m allowed to eat, but it just comes out in the bag. I get no nutrition or calories from it. For a while I was trying to eat small amounts each day. This turns into a greater risk of leaks and more skin pain. Even went so far as to go out to dinner one night - Next morning, leaks. So no more dinners out for me.

Back to chewing food and spitting it out (at home). I’ll eat some chocolate and cheese, but that’s about it.

Drinking?

I’m allowed to drink ‘for patient comfort’. It comes out in the bag after about 15 minutes. Cold drinks come out cold. I do a lot of rinsing and spitting into the sink, attempting to trick my body. This doesn’t work that well.

Extraction of the pleasure of food without swallowing is possible. Ballpark 80% of the pleasure is in the taste. Drinking, tho - It requires swallowing.

Some drinks eat away at the bag and the skin. So I’m mostly back to just water.

What about DRINKING?

Oh, yeah - Alcohol. Well, an occasional drink makes it in. I don’t absorb much alcohol in the short time it’s in my system. I’ve yet to stumble upon a drinking contest. I’d need to be in the bathroom every 3rd shot anyway. Haven’t caught a buzz from alcohol this year.

Cannabis?

Yes.

Scans\Prognosis?

My oncologist left Duke at the end of 2022. Duke neglected to assign me a new one, and I neglected to follow up. This finally came to a head when insurance refused to pay for my January Signatera test (an expensive analysis that looks for my tumor’s DNA in my blood).

First appointment with the new oncologist, and the thought occurs ‘Well, at least I can’t get any bad news today - This is just a formality’. Then they say I’m overdue for a CT scan, and pulls strings to get it scheduled for that very evening. Ask about chance of recurrence, and the 30% number he tells me is higher than I want to hear.

A few hours later, my CEA reading comes back higher than expected at 3.1. CEA is a blood test that measures a blood chemical that’s present when you’ve got active colorectal cancer. My previous readings had all been less than 1.8 - Well below the 2.5 threshold for concern. Concerns abound.

So it’s the CT table at 6PM. Initial scan. ‘Inhale. Hold your breath. Exhale’. Contrast solution into my PICC line brings an uncomfortable full body warming sensation. Then the mild panic and arching of the back. Close eyes and breathe. If the CEA results were low I’d be fine. They weren’t and I’m not.

Check the poker faces of the techs after the scan. They were whistling as I left - Was that a tell? Did the scan look really bad? If I were a tech, I’d have a whole routine to try and hide my dread if I saw a bad scan. I’d probably whistle.

The scans are looking for tumors apart from my primary tumor, which was removed with my rectum. Colorectal cancer tends to spread to other sites - Most notably the liver and lungs, but plenty of other places as well. Once it spreads from the primary site, you’re considered stage 4. Treatment devolves to more chemo and whack-a-mole surgical interventions. I know two people going through this. They’re with us, reading this now. They’ve both been here, and painfully far beyond.

It’d take a really manipulative bastard to write all this and hit you with a bad ending here. What I want you to understand is the real panic of this time. This cancer is not in my head. Scans do not always come back clean. Nothing is for the best. None of this is fair.

Slept poorly. Pathology results came back when I was in the shower - No evidence of metastasis. Shed some tears of relief when I got out of the shower.

Then just today, my Signatera results came back - No tumor DNA detected.

So those are my latest scan results - Good news for now. All I need to have happen is keep those results up for the next 2-½ years or so, and then my odds are really good that this specific cancer never returns. Every 6 months another CT scan, every 3 months another Signatera test.

Life?

Visits from college (and beyond) friends Heather, Jim and Tanya (with Dale and progeny) have all been a welcome break from the monotony of healing.

Heather took a big gamble in showing up for about 4 days after not having seen me in like 6 years. As it turns out, she’s still her and I’m still me, and we had no problems passing the time. Thanks to her husband Mike for letting her get away for a bit.

Got out one night with most of the soccer crew. I’ve missed playing soccer - Competition and play are low on my list of capabilities. I’ve also missed the people I used to play with - They’re each more to me than what they are on the soccer field. Usually I turn into a TPN pumpkin at 8PM, but I stayed out until 11. Which means I was hooked up to TPN until almost 11 the next day. Worth it.

Jed’s murder mystery night party, adults only picnic, mid-day pool at Accordion with Chris V, early evening pool at Accordion with Alise/Lillian/Brandon, TMBG concerts, visits with friends I can’t lunch with but they visit anyway - There are good memories wedged in with the monotony.

Family is good. Theo is competing in the annual Beaver Queen Pageant - Mark your calendars for June 3rd and come on out to Duke Park. This is one year I’ll actually get to watch the pageant - Usually I’m tending bar in my front yard. Henry is working on his jump shot and starting a growth spurt, plus playing the upright bass. Karen is the best, and she looks good being it.

Working with 2-3 clients at the moment. The wound bag brace makes it so I can actually go in to client sites more than once a week. Enough work to keep me from looking for more.

Mostly, just trying to get through each day. Caught between the knowledge that our time is limited and the desire to fast forward to life post-surgery.