Friday, August 29, 2014

Not our best week, but even the bad can be worse

What a week.

I got a cold and gave it to everyone except Amanda, somehow. Gordon got it and was snotty and ran a fever. Then his eye started to swell up. Amanda took him to the doctor, who thought it was pinkeye and prescribed ointment. Next morning, this:


OMG! Poor little guy! Off to the emergency room, where doctors figured out it was actually some sort of cellulitis, a serious medical situation that could spread to his brain or his eyeball. They put him on IV antibiotics after several pokes. A second trip to the ER today for more IVs. I hope he'll be okay! This is the first time he's really been sick and it's heartbreaking.

My last update here mentioned Amanda getting a ureteral stent. She thought it was good for a year, but they called her in for an appointment today to replace it already. The first procedure was the most painful thing she's been through in the whole cancer ordeal, and now she has to do it again. My poor dear!

Me, I've been sick on and off for weeks now. It's in my lungs and throat and ears and hasn't really budged. Meantime, I've been at it like crazy at work, as we begin the most important radio listening period of the year, fall ratings, as of Tuesday, and I've been working on some major changes to the station. I won't whine about it, 'cuz years in radio have taught me that whining about radio is kind of stupid because it's an excellent business that we're all delighted to be in, but man, I've been busy.

Latest on Amanda's overall health is that we followed the London cancer doc's advice and she's now taking a hormone blocker. I don't remember the name of it. The only side effect she's noticing so far is extreme fatigue, lack of get-up-and-go, and general goddamn-this-is-exhausting. She wants to do stuff, but between Gordon being a handful and having an energy meter that now goes into negative digits, she's finding life to be more challenging than she can stomach. I feel badly for her, because I want her to be able to enjoy our little boy and the new house and the big backyard with its enormous mature trees and expansive unexploited garden area -- but every little thing is a drain on her. Sucks. We're standing by to see what the next step might be in terms of a clinical trial in London.

I'd love for all of us, all three of us, to just go to bed tonight and get two straight days of sleep. Colleagues have told me that my idea of getting some red wine and over-the-counter sleep aids and doling them out this evening to ensure we rest soundly until Sunday afternoon is a bad and potentially fatal idea. Fair point. I will try to find some other way for us to get some rest.

Amanda's going to read this and wonder why I didn't mention the air conditioner failing us on the hottest day of the year despite being just a few weeks old, the newly-discovered foundation issues that put water in the furnace room floor, the dehumidifier that leaked on the office floor, the chipmunk that's taken up residence in our garage, the .... yeah, y'know, I could write a blog all about the seemingly non-stop WTF events that keep happening in our lives, but those things will come and go. Right now I'm going to go home and hug my little puffy-eyed baby boy and my you-stuck-a-metal-tube-up-her-WHAT-now?! wife. As long as I can help make their lives better and get a little rest for myself, those other things can take a back seat.

Have a peaceful weekend.

Thursday, July 10, 2014

Someone's mistake leads to some good news on Amanda's cancer

This might not sound like good news at first, but follow along.

Amanda has stopped chemotherapy immediately and is not going to be treated in Toronto further for now.

When Amanda's cancer was first discovered during her c-section in April, 2013, samples were sent for histology -- a microscopic analysis of the cells to determine the type of cancer and the grade. Tumour grade is the description of a tumour based on how abnormal the tumour cells and the tumour tissue look under a microscope. It is an indicator of how quickly a tumour is likely to grow and spread. More samples were taken when surgeons took out Amanda's reproductive organs and removed all the cancer they could find.

The Halifax pathologists determined it was a mix of high-grade and low-grade, and the doctors went about treating it as high-grade. High-grade tumours divide rapidly, so they're supposed to be more receptive to chemotherapy agents that target cells that divide rapidly. As you've read here, the tumours did not respond well to the first-line chemotherapy which included a platinum agent. Having high-grade, platinum-resistant, serous ovarian cancer is a bad, bad thing. That's why they put her life expectancy at "a year, maybe two."

When the cancer came back (or was rediscovered, really, since it probably never really stopped growing in the first place), Amanda got on a clinical trial with a drug to treat platinum-resistant high-grade ovarian cancer. It never really showed signs of working, either.

Princess Margaret Hospital, Toronto Ontario
View of Princess Margaret Hospital
minutes after we got the good news.
Amanda visited Princess Margaret Hospital in Toronto in February. They were a little suspicious about how the cancer was growing, and wanted to re-do the histology, and furthermore, do a molecular analysis of the tumours with a view toward future personalized cancer treatment.

On Monday, we went back to PMH to get the pathology report and the latest CT scan results.

The cancer is still growing, a bit, but the real shocker was in the pathology.

It's not high-grade after all. It's low-grade. Halifax got it wrong.

Low-grade cancer is still bad. It's still going to be fatal. It thumbs its nose at regular chemotherapy. That is, the kind of chemo that would work great on a fast-growing aggressive cancer would to do little more than poison Amanda while barely inhibiting the tumours.

BUT it grows more slowly. That's the good news, if you were waiting for it. It grows more slowly.

The molecular analysis also reveals that the tumours are estrogen receptor positive. That means the cells can be driven faster when they get estrogen. Amanda's ovaries were taken out last summer, but the human body generates estrogen in other ways. Even drinking soy milk can be estrogen-like enough to trick the body. But now that the docs know this, they have another drug option: an estrogen BLOCKER. They can help starve the cells by giving a pill that neutralizes any estrogen in her body.

Other treatment options may include surgery or future drugs being tested in clinical trials.

The immediate impact is that Amanda is not going to be given more Caelyx, the chemo drug she's been taking during the clinical trial. It wasn't working, and now that we know it's low-grade, not high-grade, it's not appropriate any more. The side effects she's been experiencing from Caelyx should start lifting in the coming weeks.

Longer-term, there might actually be a longer term. Instead of measuring the rest of her life in months, it could end up being years. No guarantees, of course, but the doctors actually said years. Not necessarily a lot of years, but years instead of months is SUCH a big difference, especially with baby Gordon growing every day.

She'll get to see Gordon more, because the next stage of treatment will probably be done in London, Ontario, reducing the need for frequent, expensive, exhausting trips to Toronto.

"I still have terminal cancer," says Amanda. "I will die of ovarian cancer at a young age. I still need to remain in Ontario where I can get the best care. There's still a possibility it will kill me this year. But now there's hope for some more time."

It's been such a big piece of news that we're hardly able to process it.

"Maybe I'll get to have a conversation with Gordon or walk him to his first day of kindergarten," says Amanda. "Maybe this won't be my last summer. It feels weird to think this way, and it's still not coming naturally to me. There's fear of putting the guard down, thinking I'm out of the woods for awhile. It will take some time to understand what's happened and change my way of thinking."

Amanda got a painful reminder of how serious this still is, just a few weeks ago.

She was summoned to Princess Margaret Hospital for a urologist appointment and came out with a ureteral stent. A tumour was pressing on her ureter (the tube that takes urine out of the kidney and toward the bladder) and causing urine to back up in her kidney. Halifax saw it but didn't suggest intervention. Here, they wanted to act immediately. She didn't even know it was going to happen that day and was there by herself.

I'll spare you the extended play-by-play of the ordeal, but they took a stiff rod, inserted it into her urethra, pushed it through her bladder, up the ureter, into her kidney, and then put a tube in there with a pigtail on each end, one end sticking in the kidney and the other in the bladder. From what I can gather, it was every bit as awful as it sounds, and she did the whole thing with NO ANESTHETIC. Ugh.

So, to sum up: Somehow, the pathologists in Nova Scotia got her diagnosis very wrong. Docs here say the treatment she received up until now would've been the same either way, but now that they've re-done the examination and come up with a different conclusion, the treatment and prognosis are different. She might have years, not months, and the options have changed.

Thanks, everyone, for your ongoing support and love. And big thanks to the folks at PMH who have been so, so nice and sharp. Our exhausting life has not slowed down any, but we're hoping to get a chance to breathe soon. Love you.