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.

Amanda's message for Ovarian Cancer Awareness Month

Thanks to the Canadian Cancer Society for turning Amanda's notes and one of my photos into a concise and moving message for Ovarian Cancer Awareness Month. This was posted on Facebook and has been spread widely.

From the Facebook post:
Amanda is a proud mother, cancer fighter and passionate advocate for ovarian cancer awareness.

Diagnosed with stage 3 ovarian cancer 5 months ago when her baby was born, 34-year-old Amanda is thankful every day for baby Gordon and for the support her mother and stepfather have provided:

“They have taken on the majority of the baby’s day-to-day care to allow my husband to continue to work and me to rest and cope with the side effects of treatment. They have sacrificed so much to help us. They bring the baby to my bedside and hospital room – wherever I am – to ensure our mother-child bond stays strong. Gordon is constantly surrounded by love and is a beautiful, thriving little boy.”

Her advice to other mothers with cancer: “You must take care of yourself – this is what your children need most from you now.”

And to all cancer patients: “Inform yourself as much as possible, including the statistics, but don’t get bogged down by them. Instead, find your fight and vow not to be one of them.”

A good, tight summary of it. Barb and Wendall have been amazing through this, taking care of Gordon every day. I wouldn't have been able to keep working without them. I wouldn't be able to visit Amanda in hospital without them. She wouldn't see Gordon in hospital without them.

As for the stats -- it's hard not to feel defeated by the numbers, but every case is unique. Amanda's found solace in the notion that she's not bound by everyone else's statistics. She's a case study of one. Her circumstances are not the same as everyone else's. That doesn't mean she's excepted from the hard realities, but it gives her room to breathe when looking at numbers that are frankly disheartening.

Complications take best hope for cancer cure off the table

It's going to take a bit longer to grieve the loss of a treatment that had seemed like the greatest opportunity to nail Amanda's ovarian cancer forever.

The much-ballyhooed treatment that we'd put so much hope into as the best chance to extend Amanda's life is no longer an option, thanks to complications from the very same treatment.

I've written here about intraperitoneal chemotherapy -- IP chemo, aka IPHC or HIPEC -- and how it's done: a port is surgically implanted to pour intense doses of cell-killing chemicals into the abdominal cavity in hopes of bathing any stray cancer cells and remaining tumours in a toxic bath. Better to soak the bad guys in the killer juice directly, the theory goes, than to flush the whole body with with harsh chemicals in the hope that some of it will reach the target.

In Amanda's case, some of the chemo fluid seems to have leaked from the port site into surrounding tissue during one of the two IP treatments she was given. That's led to some significant inflammation and more pain than she's ever experienced before. It's like she's been burned from the inside out. Everyone's surprised at how much even the slightest touch causes her intense pain.

She was admitted to hospital last Thursday after spiking a fever. The doctors found the source of the infection and have been treating it, but are also taking the opportunity to explore that hard, swollen, painful mass in her belly and try to get a handle on her pain for the first time in nearly two months.

Taking a PICC -- Amanda's brand-new dongle that replaces the need for more IV pokes.
Plug-and-play access to her deep, bloody insides.

The doctors considered Amanda's bad reaction to the chemo leak and made the tough decision that she won't be getting any more IP chemo. This was devastating news, since she's been reading studies that show a significant improvement in life expectancy with each course of IP treatment. She's been pleading with them to keep going with IP even if it hurts. This was the great hope. Now it's not even a maybe. It's not happening.

But the docs say the risk of further damage is too high, and that another leak would mean an end to chemo entirely.

So, there's a new plan. It's going to be aggressive. As I understand it, this will mean chemotherapy every week for the next month or two, instead of two out of three weeks. This all hinges on her blood counts remaining at safe levels, and side effects being kept within safe limits. She has been experiencing side effects, obviously -- her hair fell out (but has come back somewhat), she's had awful bone and joint pain, and she's losing feeling in her feet.

They won't just be giving her more frequent treaments -- they're even talking about giving an extra one. What kind of person sees an extra dose of toxic chemicals being infused into her body, attacking her bone marrow, kidneys, skin, nerves and blood supply as a "BONUS TREATMENT"? Our Amanda, of course. Gutsy broad.

Blood counts became a concern this week. While Amanda's white blood cell counts were better than expected, her hemogoblin levels had fallen below a safe threshold. She'd be given a transfusion for the first time in her life. It was hoped she'd get some kind of energy boost from that, but she's still tired and logy. (I refuse to say hemoglobin and instead say hemogoblin. Because it's fun, so shut up.)

The painkillers are also knocking her back. She'd gone way too long without adequate pain management. Imagine the worst pain in your life, but it goes on all day, every day, and no one seems to be helping. Really, to be fair to the docs, I don't think they were told how bad it was and how little relief she was getting. Now that they know, they don't want to send her home until the right dose is found. So far they're up to 2.5 times what she was taking at home and she's still hurting.

We're also going to work on limiting her activity at home so she doesn't overextend herself and miss a dose, or push too hard and aggravate the sore spots.

One piece of good news is a port of a different sort.

Welcome the PICC -- a peripherally inserted central catheter. In her case, a SUPER PICC!!!!!!11!!!!

Up at the top of this post, there's a picture of Amanda's new PICC. Below is a video from someone else.

I mentioned before that it's been awful to watch Amanda poked again and again with failed IV insertions. Well, the PICC is basically an IV that's done once and left in. It's been inserted in her arm and threaded all the way to a place near her heart. Any time they need to give an IV infusion or take blood, they'll just use this little dongle.

So, that's the wrap-up for now: A week in hospital after a fever, and a change in strategy for the last leg of the chemo schedule.

We're all looking forward to having her back home and feeling better!

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