Tuesday, September 24, 2013

More complications on the way to chemo completion

The hits just keep on coming. Why can't any of this be easy?

This was all hard enough when it was "just" a new mom being diagnosed with stage 3C ovarian cancer during the birth of her first child. But in hindsight, the early days of chemotherapy were relatively simple and well-tolerated.

When Amanda went into hospital this summer for the major surgery to remove the remaining tumours and perform a radical hysterectomy, her big fear was that they'd find a lot more cancer. I was more afraid of simple things like bleeding and hospital-acquired infections.

Sometimes I hate being right.

Amanda Simpson with son Gordon between hospital stays in September 2013.
My brown-eyed girl and our blue-eyed boy. Both Leafs fans. Hope comes in weird forms.

As mentioned last time, Amanda was admitted to hospital with a fever that the doctors figured was caused by an abscess about the size of two Chicken McNuggets. She was in for about a week as they dosed her with antibiotics and got a better handle on the pain from the intraperitoneal chemotherapy that leaked into the surrounding tissue.

She was eventually discharged and we returned to the Nova Scotia Cancer Centre for the first of what was supposed to be three weeks in a row of a new regimen of carbo-taxol, this time spreading three smaller taxol doses across the weeks instead of one super-blast followed by two weeks off.

Bloodwork showed that her kidneys were not working as well as they had been before, so they gave her less drug than she was used to seeing. It's not that her kidneys were in bad shape -- just that the Calvert formula for carboplatin dosing (try it yourself) means you use less drug when the kidneys aren't working as quickly. When she saw the smaller bag of taxol, she was very upset. It turns out that she was getting exactly what she was supposed to, given her latest readings. Even so, that was a tough day.

Well, a little over a week ago, I finished up my Saturday talk show and immediately got a text message. Amanda was in the emergency room again. She hadn't been out of bed for two days and wasn't eating. Something was wrong. I went down to the ER and stayed until well after dark.

That was also a tough day. I think we both hit a wall. I sat in the hallway outside her room in the emergency department and tried not to cry as I thought about how unfair this whole thing is. I missed seeing our son. I felt cheated out of the past six months of my life. I felt bad for Amanda going through all this, but I felt bad for us. For me. I've tried so hard not to be selfish or greedy but in my darker moments I really feel ripped off by cancer. I hate cancer. I knew she was in that room feeling just as cheated and even more afraid.

They admitted her early the next morning after a scan found that the abscess was still the same size as it was weeks earlier.

The second and third doses of the latest chemo cycle are cancelled. Crap. Something about chemo knocking her immunity down further, potentially letting any lurking infection take over her body and kill her outright, which would be bad, et cetera.

So, another week in hospital with more antibiotics as they tried to figure out what was knocking her on her ass so hard and causing some other symptoms.

Amanda's blood results showed nothing unexpected. Her white blood cell count was something like 1.7. I don't know what it's supposed to be. That's low like a chemo recipient, not high like someone with an infection. They guessed that maybe she had an infection but the chemo was crushing the indicators. And the temporary theory that some of her problems could be from a c. difficile infection didn't pan out -- she came up clear for c-diff. They ran out of explanations.

I brought her home last Friday on what was technically a weekend pass. They said there was nothing more they could think of doing in hospital, so go home, keep an eye on things, and if things go awry, come back. Otherwise phone and officially check out on Monday.

We went back Sunday. She had crushing abdominal pain with vomiting and diarrhea. We took her upstairs to the gyne-oncology floor once more, but this time in a wheelchair.

It was good to be able to bypass the ER and the accompanying 12-18 hour wait, but who likes going back to the hospital?

The docs remain stumped. An x-ray shows no bowel obstructions. The pain from her chemo-leak scar tissue has been improving, and she says it's not related to that. It's not from reducing the dose of painkillers.

With no clear answers, she returned home yesterday, Monday. She's still feeling crappy but is eating a little more.

Meantime, my mom and dad are visiting. It's great to see them. Gordon has grown so much since they were here last. He's almost six months old, and ...

Gordon reminds me why it's good to have a UV filter on the end of your lens.
It prevents haze in photos -- not from UV light, but from gobby baby hand smears.

... has his first tooth! Holy cow! He's busier and more active than ever, chattering up a storm and putting everything in his mouth. Now a tooth. He's such a joy and a blinding contrast to the darkness we're feeling in the other parts of life.

Big weeks are coming up: Gordon's six-month ... Amanda's 35th birthday on October 3 ... our fourth wedding anniversary on the 10th ... and we're going back on Monday for the first of three final weeks of chemotherapy. She'll get to ring the big bell at the nursing station in the big chemo room!

At least that's what we hope. If her stats are bad or they think she just looks like hell, she might not get the chemo this time.

All of this is really hitting hard. Everyone in the house can see that Amanda's been worn down by setback after setback. It's clearly getting to her. She's been fighting hard to stay positive and connected, but we can all see that she's begun to sink.

None of us is in perfect condition, either, but we're all on board with helping her not only physically and practically, but in every other way to get her back in the game.

4 comments:

  1. It is relentless and exhausting. You are all in my thoughts and prayers, and I hope the road to ringing that bell smoothes out. ~Catherine

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  2. I admire your strength during this time, I hope it gets better soon.

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  3. I found your comment on ovationsforthecure and followed your link to this website. I was diagnosed with ovarian and uterine cancer two years ago at age 44. Much older than your wife, but still young for this terrible disease. I have been following this blog and been praying for Amanda and you too. What a terrible twist of fate for Amanda to get this diagnosis, during what should have been one of the happiest times of your life. She has faced so many heartbreaking setbacks. Cancer is an ugly disease. I will continue praying for Amanda, that she gets a break and can get back to her chemo. God bless you all.

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