Amanda's surgery update: A roller coster of complications

One day I feel I’m on top of the world
And the next it’s falling in on me
I can get back on
I can get back on
One day I feel I’m ahead of the wheel
And the next it’s rolling over me
I can get back on
I can get back on
- Rush, "Far Cry"

A rough week got a whole lot rougher.

"From an oncological standpoint, it was successful," said Dr. Akira Sugimoto after Amanda's surgery.

She was in the operating room for about eight hours. The first two were spent trying to get her hooked up to the required anesthetic, including an epidural line for pain relief. That was the first difficulty, but wouldn't be the last.

It was a long wait as we stood by at the hospital for any word on how things were going.

Dr. Sugimoto, appearing to have done a whole lot of work, told us that he removed all the cancer he was after. That was the big good news.

He also took out a kidney. That was fine -- that was expected.

He also took out about a foot of bowel. That's a big piece. He put the two ends back together as best as he could, but warned that there was a risk of an anastomotic leak. He said several factors added up to there being about a 10x risk of the connection failing. The term was new to me, so I looked it up. What I saw scared me -- having your guts burst open inside your belly appeared to be bad, bad, bad news. Like, DO NOT WANT, often fatal, bad bad bad. It immediately became the complication I feared the most.

Amanda struggled with pain control, despite having the lab-generated equivalent to heroin injected straight into her spine. Eventually they got things on track, and the only big problem was having her nod off mid-word due to all the drugs. But if she was getting better, that was a small price to pay. I've been telling her that her only job is to get better, anyway. Don't try to be smart or productive.

Things went off the rails on Wednesday morning.

The one and only time Gordon snuggled briefly with mommy at the hospital.

Amanda's been through some bad pain during this journey. The worst, she's told me, was when chemotherapy juice was pumped into her fatty tissue in a botched attempt at intraperitoneal chemo. It caused her internal chemical burns and sounded impossibly dreadful.

So, when the nurses here in London asked her to rate her pain on Wednesday, 1/10 being no pain and 10/10 being "the worst pain you could imagine" -- and she said it was a 10 -- I knew something bad was happening.

I was taking Gordon in for a visit and got a phone call from Amanda, crying, saying the doctor was coming for an emergency meeting. There was fecal matter in her surgical drain. Her sisters and mom were also on their way.

Dr. Sugimoto confirmed that the bowel splice had broken and feces were now filling her abdomen. She'd need emergency surgery. NOW.

Gordon went home with Amanda's sister, Amy. I stayed with Amanda's mom, Barb, at the hospital as they wheeled her down to the operating room to do a colostomy.

It took more than four hours. She was given a hole in her belly (a stoma) where a bag will be attached. Dr. S. told me he washed out her belly and stitched her up....partially. Apparently the risk of infection is so high, they don't want to seal it all in and have it get nasty. He explained it's better to pack the wound with gauze, let the body attack the filthy bits and turn it into goop, then take out the gauze a few days later and finish the stitch-up. Ouch.

Hours later, Amanda was taken back to her room. Same room, same flowers from friends and loved ones, same pillow, same bowl of ice chips on the table. But things were different, for sure. I ended up leaving around 3am.

Since then, pain control has been a roller-coaster. Last night, she wavered between nodding off from the drugs and crying in agony. It's so hard to watch. I'm helpless. She's hurting. Neither of us can really be sweet and loving and our best selves -- she's in agony/dopey, so I can't blame her if she's snippy with me for not knowing exactly how she's going to want her pillows placed as armrests. I'm exhausted and emotionally somethingsomethingsomething and haven't the slightest clue how I can be anything but present and attentive.

And Gordon. Poor Gordon won't snuggle with mommy. He's been so understanding but I know this is getting to him. He misses mommy but, hey, at just under three years old, how can he possibly process feeling sad, lonely, scared, and maybe even angry that mommy's not there? He's been sometimes polite, sometimes potato-sack-level defiant, sometimes crying, sometimes exactly the stellar little boy I love so dearly.

Speaking of which ... I have to go pick him up from daycare right now. I missed work yesterday but worked a full day today. The day's done. Time to get back to my "real world."

The cancer's back, and the surgeon goes after it tomorrow

Well, the nasty bugger came back.

Amanda's tumours were mostly stable while on the aromatase inhibitors, but there was this one gob of disease that wouldn't stay put. For a while, we all thought it was the carcass of the abscess that was left after her hysterectomy. But it was actually a tumour.

It grew and grew, and it's grown to the point where it's causing her pain as it presses on neighbouring organs.

The latest MRI reveals that it's "invading" neighbouring organs, too. It's worse than we figured, but the docs say they can handle it.

With surgery.



Our surgeon is simply excellent so far. Dr. Akira Sugimoto doesn't just have the chops in the OR -- he's one of the most empathetic and caring medical professionals we've ever encountered. We're confident in his skills, and just as importantly, he gives a damn SO hard.

The surgery ahead tomorrow at Victoria Hospital will aim to remove all the disease they can safely take out. They'll also take out one of her kidneys -- the one that gave up after a tumour strangled off her ureter.

They may very well end up resecting (cutting out and splicing) some bowel. She could end up with a colostomy.

She'll have another huge incision up her whole abdomen. Amanda will be in hospital for a week, with another six weeks of minimal activity at home before she's 50% healed. It's going to hurt a lot.

So, why's she so upbeat about this?

Because the doctors and Amanda are so confident that this is the right time. The right time to get the tumours out. The right time to do the surgery so she can be back on her feet in time for gardening season. The right time to take this thing down to a level where her body can get back to kicking its ass, with the help of chemotherapy again if that's what it takes.

Me, I'm kind of scared. Last time she had one of these big debulking surgeries, her blood pressure dropped dangerously low in the OR and they had a hard time bringing it back up. I saw how much pain she was in. I saw the wound open and get infected. I saw so many needle pricks and uncomfortable nights. The whole thing was hard for me, and I wasn't even the one who was sliced. I've seen her go through so much agony and upset. I've had vicarious trauma, but I'm doing my damndest to be an oak, not a rock -- strong, sturdy, grounded, but able to bend.

We've also had to explain things to Gordon in the most appropriate way we can. He's two and a half years old, almost three, but very perceptive and sensitive. He knows mommy hasn't been feeling well. So we had to tell him that mommy has a sort of ball inside her that shouldn't be there. The doctors -- Gordon can now say "Doctor Sugimoto" and "Doctor Welsh" -- are going to do an operation and take it out. She's going to be in hospital and she's going to miss him a lot.


He's going to miss her, too. So am I.

Friends and family have offered their love and support, and the folks where I work have also been excellent.

Gordon, man....what a kid. He went from being "behind" in his speech last year to now being "advanced" according to the speech therapist we visited. I'm so impressed at how smart he is, and how he loves to joke and make people laugh. And he's so, so sweet, kind and polite.

His latest kick is dancing to Macklemore's "Downtown" -- it's on repeat at our house.



So, that's the update. The cancer has rallied, but we're rallying, too, with a kick-ass medical team and some wonderful people watching our backs. As shitty as things are, we're in a good position to fight back.

Thanks to everyone who's been so kind to us through all this. We appreciate it more than we can say.

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