Of hummingbirds and NET cancer

I mowed the lawn on Friday, discovering in the process that the hummingbirds have returned. Later, I went to the cemetery to visit Jane’s grave for the 29 month anniversary of her death from NET cancer. It was a beautiful spring day, so afterwards I drove down to the waterfront as we often did after a day of working in the garden or in the classroom. My plan, initially, was just to sit in the car and look out over the water but something moved me to take a walk on the boardwalk.

It took close to 50 years to realize even a fraction of Sydney Farber’s dream of curing childhood leukemia…

It was not my typical walk. I moved slowly, remembering all the times we had paced along together. We never walked anywhere slowly–even when the walk was an aimless wander. But my heart was not in that kind of walk Friday. It was a walk so soaked in memory I could not move quickly.

The missing swan

At one end of the boardwalk, the Fall River empties softly into the Taunton River. Geese, ducks and swans nest and rest there. We would stand on the bridge sometimes and watch them float by. We particularly liked to watch a pair of swans. At this time of year they had not yet hatched their latest brood and when you saw one you saw the other.

We are currently raising about $200 a day…

But the last two years only one swan is there. Somewhere he–or she, I can’t tell one sex from the other in swans–lost his other half. Friday he coasted near the far bank preening his feathers and looking as lost among the ducks as I feel most days among people. My social skills don’t get much work these days. Most of our friends still work in classrooms and those who don’t have lives and responsibilities of their own.

Sleeping with NET cancer

Still, I make the bed, wash the dishes, shower, shave, and brush my teeth every day. I do the paperwork and planning raising money requires. I follow the research–even when most days the results are depressingly similar. I write, though too often for an audience that seems too small to justify the effort. I clean the house, I mow the lawn, I work in the garden. I look for meaning. It is what I do–what I have always done.

I am still traumatized.

The dreams at night are no longer hideous replays of the end of Jane’s life. They have become more consoling–more focussed on the future than on what might have been. But I still have trouble forcing myself to go to bed at night–I am still traumatized. And getting up has become increasingly difficult in recent weeks.

The NET cancer problem

The fundraising is not going well from my perspective. Yes, we are ahead of last year a this point. But I have used up everything I used a year ago and I don’t have new ideas for the months ahead that will get us to the goals I’ve set for this year. It has finally dawned on me that getting to those goals means raising nearly $500 a day every day this year–and next year’s goals will require more than $1000 a day. We are currently raising about $200 a day–and that effort is taking every ounce of energy I have to keep up with.

But the last two years only one swan is there.

Nor is the research going particularly well from my perspective. The pair of viruses that looked so promising ten months ago seem to be stalled by lack of funding and viral research protocols. And there may be other issues there as well. And with the tiny quantities of research money we have progress in all areas of research will be painfully slow.

Life after NET cancer

I am not giving up, though. I’ll keep looking for breakthroughs in both fundraising and research. I have to keep reminding myself that I have only been dealing with this for a bit less than three years–and only a bit more than two in terms of raising money and general awareness. It took close to 50 years to realize even a fraction of Sydney Farber‘s dream of curing childhood leukemia–and he eventually had resources I can only dream about at this point.

It was a walk so soaked in memory I could not move quickly.

I don’t know how that swan lost its spouse. I don’t know what it feels inside. I don’t know whether it is merely waiting for death or is working to return to life. But I know how I lost my wife and I know what that feels like inside–and I refuse to stop living so long as there is any chance I can make a difference.

The hummingbirds came back on Friday.