Friday, July 1, 2016

The doctors are out of ideas, so we work toward the end

We're planning for the end and beyond now.

With Amanda swollen up and seeming generally unwell, and new tumours having appeared in her spine and liver in addition to her skull, ribs and pelvis, she returned to the doctors for an update. The medical oncologist who's been leading the chemical fight against her ovarian cancer since we arrived in London two years ago was there, along with her newest doctor from the palliative care team.

There's really nothing safe and effective they can do to stop the advance of the cancer.

It has smartened up to the hormone blockers that she'd been on for a year and a half.

It wouldn't respond to chemotherapy -- they tried at the beginning, only to find out later that it was low-grade cancer, which moves slowly and is largely unaffected by chemo. Now it's going fast and has already been survived chemo before. Besides, with only one kidney, a broken one, the chemo would ruin her.

Surgery isn't an option.

Radiation is there to address the pain, not wipe out the tumours.

Clinical trials would require her to be in better health right now. Her health is not good. Her kidney function has slipped below what it was before the neophrostomy tube was inserted. It's being squeezed, invaded, stressed or otherwise put in danger.

They offered one more thing Amanda could try: a low-dose oral chemotherapy pill. But they didn't make any suggestion that it would do much.

So, that's it. The fight is over. Cancer won. Now it's just a matter of time before it claims her body and her life.

How much time?

"Not weeks, but months .... but a small number of months," is the answer I remember Dr. Welch giving us. In explaining why he could only give an imprecise estimate, the doc explained that when they get into 3-6 month territory, there are too many variables to make any accurate predictions. Minutes later, Amanda demanded to leave the room. Her mom and Wendall took her back to our house. I followed a few minutes later. That was a draining day.

A follow-up talk with the other doctor put the prognosis at closer to two months. 

Given all that's happened in the past few months, I think this was not a huge surprise, but still devastating to hear officially.

Now what? Really, now what? What do we do? What do we have to do and what are we supposed to do?

A few of the supplies Amanda uses to maintain her colostomy.
I'm so pragmatic that I start thinking about the obvious must-do things: get those taxes done, get a will, transfer ownerships, make funeral arrangements. I want her to have life experiences that she's always wanted, where possible. I want to make a biographical video to have record of her life story to reflect on in the years to come and to share with Gordon so he can better know his mom.

And even with all those wants, we still have to go to sleep and get up, and take Gordon to daycare, and eat, and clean, and work on the deck, and get the winter tires off the car, and all the routine things that comprise regular life.

So, with months left, maybe less, and the prospect of her getting sicker and sicker, what do we do?

I'm here for Amanda, as always. Family is devastated but also wanting to help.

Nurses are visiting daily to maintain her wounds and bandages. The palliative care team is on board to help keep her comfortable. Other health pros have arranged delivery of a walker.

I've encouraged Amanda to come up with some 'bucket list' things to do ASAP. She's always wanted to drive a convertible, and Mandi at work is lending us hers this weekend. (Thank you!)

Mary came down last weekend to get all the taxes caught up. (Thank you!)

We're in touch with an estate law expert to tackle the wills and further planning. (Thank you!)

But the rest is day by day.

We still have to talk to Gordon about all this.

More updates to come.

2 comments:

  1. My heart is with you both. Jessie Smith

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  2. Devastating news.......not sure what else to say.....
    Heidi

    ReplyDelete