Last words to the dying

I spoke to my conscious wife for the last time 40 months ago today. She came out of the coma she had entered shortly after noon at 5:57 p.m. She could not talk.  I told her the doctors said there was nothing left to try and that we would take her off life support the next morning.

…one of the more horrible arrows in Death’s quiver.

She shed a single tear when I told her that. I told her I loved her. I told her I was sorry I had failed her. I told her she was going home to the garden we both came out of more than half a century before. I told her I loved her. She closed her eyes. I kissed her forehead and whispered, “Good night, my warrior princess.” I held her hand until the nurses insisted I go find something to eat. I came back and held her hand until they told me to go to sleep.

Descent into death

Telling her she was going to die may seem cruel to some people. But Jane prized honesty above everything. She needed to know what was happening. The greater cruelty would have been to lie to her, given who she was and what we both believe.

…there was nothing left to try…

In the morning, I read to her, chanted to her, sang to her the songs of our faith. I talked to her. I held her hand as they removed the feeding tube, turned off the oxygen, and took the sensors and IVs away. I descended into death with her as far as a living man can. Just before 8 p.m., there was a catch in her breath. I leaned in to kiss her and caught her final breath with my lips.

Forty months in my personal wilderness

Anyone who wants to understand English literature has to understand the symbolism involved in colors and numbers. Forty is the number associated with trials and temptations. Moses and the Israelites spent 40 years in the desert, Christ spent 40 days in the wilderness.

I descended into death with her…

Forty months after Jane’s death I am beginning to ascend from the gates of Death where I left Jane. Some days, I feel almost human–almost alive. Then, suddenly, I am back in that hospital room being brave and strong despite the certain knowledge that everything had unravelled in less than 24 hours and there was nothing more I could do than hold Jane’s hand and help her let go of the shattered vessel that had been her home.

Forty months of battle, forty months of healing

Forty months after Jane’s death I can finally move my wedding ring from my left hand to a finger on my right for a few hours each day. Last night, I did that for the first time in a public setting. I am finally able–for short periods of time–to accept that the “until death do us part” has happened and that my marriage to this extraordinary woman is over.

Then, suddenly, I am back in that hospital room…

Forty months after Jane’s death, though, my personal battle against the disease that took her life–that ended our life together–is far from over. We know more about her disease than we did on that August morning when her doctor told us what she had. We know more about it than we did the first time we met with Jennifer Chan in Boston. We know more about it than we did the night Jane killed it in the only way anyone ever has whose disease was not discovered before it could be detected.

Forty months of good and bad

Forty months after Jane’s death, we still have no cure. We can still only alleviate the symptoms some of the time–though we have a couple of new ways to do that. People still sit in their bedrooms or bathrooms injecting themselves in the belly once or twice or three or more times a day.

We know more about her disease than we did…

But 40 months after Jane’s death we are spending three times as much on research than we were spending when she died. Forty months after Jane’s death we have a couple of things that look like they have the potential to turn into a cure for at least some patients.

Forty months of small victories

Forty months after Jane’s death we have some better–though not perfect–means of detecting the disease. Forty months after Jane’s death, we have some small embers hope. Whether those embers can be coaxed into a full flame remains to be seen. These are difficult times financially–and research costs money.

…we still have no cure.

Forty months after Jane’s death I spend my days trying to help find the answers to this disease–and to bring comfort to those who are afflicted with it. I read, I think, I write, I plan. I work to raise awareness and spread the knowledge we have gained in those 40 months. I work to help raise the money to fund the research that will tell us the things we need to learn in order to find a cure.

Forty months of healing

But forty months after Jane’s death I also spend a part of every day trying to heal the deep wounds losing her has inflicted on me. Watching the person you love most dying in front of your eyes is a shattering experience. It is an experience I would shield Satan himself from.

…we have some small embers hope.

Carcinoid/NETs is one of the more horrible arrows in Death’s quiver. My work now is to steal that arrow so that no one lives the death Jane faced.