Friday, January 2, 2015

A welcome gift to start 2015: A New Hope

Christmas is done and we're in 2015 now. And guess what? Everyone's still here.

A year ago, we celebrated Christmas feeling like it could be Amanda's last. The prognosis from the docs in Halifax was not good, and suggested she could very well be dead in a year. We didn't realize it at the time, but her ovarian cancer was still around and still growing.

Now we're in London. The docs here figured out that her cancer was not a fast-moving, high-grade, chemo-resistant strain, but a slower-growing low-grade kind. It would scoff at platinum-based treatment, but their testing found it was feeding on estrogen.

That revelation led to a new line of therapy: the estrogen-blocking Letrozole. Side effects, yes, but not as severe as what Amanda had from the aggressive chemotherapy or the experimental stuff.

And to our astonishment, on the first scan after starting Letrozole, the doctors revealed that her remaining measurable tumours had shrunk.

Well, a couple of weeks ago, in the lead-up to Christmas, we went back to get the results of the next quarterly scan.

Guess what? They shrunk again.

Amanda and Gordon on Christmas morning.

All the measurable tumours shrunk at least a little. Some by a significant percentage in at least one dimension, others just a tiny bit. Technically, I think they'd classify it as "stable" but even THAT is good news.

Granted, these are the measurable ones -- there are specks of cancer throughout her abdominal cavity, some in places that we worry will be a big problem eventually ..... but that's now feeling like EVENTUALLY.

Each time the scan comes back as stable or improved, it feels like gaining compound interest on life. It's not just another three months without a crisis -- it feels like there could be multiples of that time added to her life.

Most people we've told have been very emotional in their reaction. We've been surprisingly calm about the whole thing. Maybe we've been hardened by all the difficulty. Maybe we're too cautious to get our hopes up.

But I can see a new hope in Amanda. I know she's reluctant to get her hopes up, but I see her buying into the idea that she's going to be around longer than she thought.

Life's still not easy. Between "chemo brain," "mommy brain," "menopause brain" and whatever "brain" comes from the meds she's on now, she's been experiencing what one could politely call cognitive challenges. Math is hard. Forming mental images of physical tasks to be done is pretty much impossible. Even following recipes or preparing to go out for an errand can overwhelm her. She's always been so, so smart and clever and obsessively organized. To be unable to follow a shopping list, hang a picture or keep her keys in a reliable place is devastating.

As Amanda tries to cope with her diminished smartitude, we're watching Gordon's climb. He still seems like he's on the verge of full-on talking. He's been attending daycare part-time and is slowly getting used to it. He's one of the youngest kids there but looks older than nearly all of them. The kid's going to be helping me troubleshoot computers soon, I'm sure.
Gordon on Christmas Eve at an nearby house that was decorated to the extreme.

He enjoyed Christmas. I don't think he fully understood Santa, but he was able to recognize 'Tanta!' and got totally on board with opening presents. It was a lot of fun. He loved the lights, the music, and seeing family.

I don't know what 2015 has in store for us. We know 2014 pushed us to the limits. The cancer, the house, the baby, the move, the new job, the interpersonal strains, the money worries, the fear and uncertainty and doubt. We're hopeful that it will be better.

Lots of love to our friends and family near and far. We want to see you soon. Let's have fun this year!


Sunday, December 7, 2014

Christmas is fun but sad when mommy has cancer

We set up the Christmas tree today, and Amanda reminded me that just under a year ago, we'd put all the decorations away with care, facing the very real possibility that she might not be alive to unpack them in 2014.

Thankfully, she is.

Amanda and Gordon hang a decoration on the tree.
And now our little boy Gordon is at an age where he can kind of understand some things. I mean, he understands an awful lot. He seems to, anyway. He certainly is a lot more with it than he was last year, when even sitting upright by himself was something brand new.

But, at 20 months, he's not the most patient little guy. He spent most of the tree-decorating process grabbing things he shouldn't, and crying and having tantrums. Pretty normal, I guess, but hard for Amanda.

As she wrote tonight on Facebook:

"Decorating the Christmas tree today resulted in misery, multiple temper tantrums and almost constant crying for Gordon. I wish his little brain could just understand I'm going to have too few Christmases with him.... and that I NEED each one, each minute of the holiday with us together to be precious."

That there's the heartbreaking part. Amanda wants to be mindful and present and checked-in so she can soak up every precious moment of time with Gordon and me. But that act of checking in and forced present-time awareness also includes a reminder every single time -- the reminder that this could be her last Christmas with her little boy.

She wants to be able to share this season with him and have him really get it. Will he understand presents this year? Will he have a clue what Santa is? He seemed to have a breakthrough over Frosty The Snowman tonight, but... every joy seems countered by a dark, powerful anti-joy.

Kitty gets in on the bedtime routine with a friendly headbutt.
I'm grateful for the time we do have together. I don't want to worry through every experience. Perhaps that's unhealthy somehow. I don't think I'm in denial, but I'm not choosing to give the sad part a bigger role than it has to have.

But frankly, I'm not the one with the malignant cells ticking away inside me.

She is. We're each going to feel things differently. It doesn't mean I don't feel things. Mine usually hit me hard all at once, or a little bit here and there. For Amanda, it seems like a constant struggle. It's hard. I'm trying to be the best support I can for her, and to keep us strong together. Goodness knows we need each other.

For those who've been wondering, there's been no major update on Amanda's health since the last post. She's still on the hormone blockers, and they're still having their side effects. She's still tired a lot and in constant pain from the long-term chemotherapy side effects. She still has that ureteral stent, and it still sucks. I think she pitched the urologist on the idea of not even having one in, and just getting by on one kidney. Turns out only *having* one kidney is one thing; having one live kidney and one dead, rotting kidney inside of you is Not Good. So far, no good options have presented themselves.

The next CT scan is coming up quick, and that's also casting a shadow over holiday comfort and joy. Will the tumors have stayed shrunken? Will they have grown? Will things be even better than last time? And whatever the results, what's next?

A short check-in from me: still working my butt off at the radio station. Despite some program changes that caused serious disruption in the lives of some listeners, ratings were pleasantly up in nearly all measures. It was good news, and a vote of confidence for some of the stuff I've been trying to lead. The whole staff has been doing great work, so I'm glad they were given the thumbs-up by our listeners. I'm working with a bunch of great people.

The Summer Of Endless Renovations has turned into the Winter Of Much Fewer Renovations. We're now enjoying the basement, free from leaks. The laundry room is still due to be drywalled. The front steps and walkway still haven't been poured, and the ground is frozen. Amanda has arranged for a concrete company to come take care of that this week. Fingers crossed that things stay peaceful on that front.

Merry Christmas to everyone! It's been another trying year. Thank you for reading along.