Dreaming of Jane

We are walking through the woods on a trail that is wide enough that we can walk side by side. We are holding hands. We come to a clearing and turn to each other. Our arms come up into a tight hug. Nothing could be better.

…my brain is melting.

Then I wake up. I am alone. Jane is not there. The anger and the hurt well up in me in a storm that leaves me shaking. It is 4 a.m. Part of me wishes I could just roll over and go back to sleep–recapture that dream and live there. I know better. I will just wake up again. And every waking is like the moment Jane breathed her last.

Fifty-eight months

The pattern has gone on for months now. It may be years. It may date back to Jane’s death 58 months ago. I know I have come awake in the middle of the night virtually every night since she died in the same state of hurt and rage. Only recently have I begun to remember the dreams that bring me awake.

We are walking through the woods…

In December, it will be five years since Jane’s death: five years of trying to come to terms with that and all it means. Barring accident or some global pandemic, I can reasonably expect to live another 30 years or more. My days are filled with meaningful and important work. I can lose myself and my pain in that. Sometimes, for a few hours, I can almost forget that Jane is not out with her sister or in another room.

Caregiver roll

I read a piece last night on being a caregiver for a cancer patient who is your partner. It says all the right things about diet and note-taking and general support. It gives the standard advice about making sure to take care of yourself. But doing that last piece is easier said than done.

My days are filled…

Jane spent her last 28 days in the hospital. I spent every one of those days with her. The nurses made sure I ate regularly, kicked me out for a periodic afternoon away from her bedside, made sure I showered and shaved and stayed as positive as possible. They, and Jane’s doctors, held my hand through every crisis and helped me let her go at the end.

Caregiver price

I had every form of support from them, from our friends, from her family–and from mine. Total strangers reached out to us in unimagined–and unimaginable–ways. A security guard I’d never met convinced his entire church to pray for us.

The nurses made sure I ate…

I lost 25 pounds in those 28 days. I lost my mind several times. I lost half my soul and the one thing that really mattered in my life. I’ve regained–and lost–some of the weight. But despite support groups and professional help and meaningful work, my heart, mind, and soul are still a shattered mess. I still feel like Job, sitting in the ashes of his burned out farm, surrounded by his friends and neighbors who can only wonder what Job has done to bring God’s wrath down upon him in such a terrifying way.

The living

God’s wrath is not something I concern myself with. I am more concerned with finding answers that will prevent others from going through what Jane went through in the final months of her life, that will prevent their spouses from going through what I went through as caregiver and spouse in Jane’s last months–and what I have gone through since. If my pain is the cost of that knowledge, I may whine about it periodically, but I’ll pay the price.

I still feel like Job...

I’m tired, though. The last two months have drained me. I’ve done fundraiser after fundraiser, meeting after meeting, reading after reading. I’ve walked my father-in-law to the end of his life and held his surviving daughter’s hand through both that and her own broken heel–and she still faces months of physical therapy for the latter while she deals with the aftermath of her father’s death.

Some time away

There’s still a pile of work in front of me. I need to close the books on our team’s Jimmy Fund Walk for the year; I need to plan next month’s NET Cancer Awareness activities–including organizing our annual social mediathon for November 10; I need to get ready for the Gastrointestinal Visiting Committee at Dana-Farber later this month; I have a dozen articles I need to write about the papers presented in Vienna on NET cancer last month, as well as advice for caregivers; and two other projects I can’t talk about yet.

The last two months have drained me.

But my brain is melting. I’m taking a few days off. I’ll do some yard work, go see a play or two, maybe pick some apples or just find a quiet spot on a beach or forest somewhere that I can listen to the waves or the wind in the trees. Cancer may never take a day off, but humans have to sometimes.