NET cancer’s twisting knife

I really have to do something about the tenth of the month. It doesn’t matter how the rest of the month has gone, that day remains as jarring as the one on which Jane died of NET cancer. The days on either side of it are no picnic either–but the tenth always finds a new way to put in the knife and twist.

Maybe then I will stop seeing Jane’s end…

March 10 was no exception, though I had hoped for better. It was the day of the annual Boston Marathon Jimmy Fund Extra Mile Brunch–a day the most successful walkers get together to celebrate the milestones of the previous year and gear up for the next. And having learned from last year that this was not an event I should attend alone, I had invited my sister-in-law along.

The solitary table

Then I developed a cold the beginning of last week. While it had begun to ease enough by Sunday that I was not concerned about spreading germs, we decided her driving up with me and returning to her elderly and frail father was not a good idea. So there I was, plate in hand, alone and looking for an empty spot to sit where I could keep some distance between me and my fellow brunchers just in case I was more contagious than I thought I was.

…12,000 people are still going to die of NET cancer this year.

Eventually, I found an entirely empty table and sat down to eat. I was eventually joined by someone else who was there alone as well. We fell to talking–as people do at these things–about the one thing we had in common: why we walk 26.2 miles in a single day to try to bring an end to cancer.

The NET cancer connection

She was a thin woman in her late 40s or early 50s with long, highlighted hair that bounced easily as she spoke about her son’s cancer that had been diagnosed and cured–and how she eventually decided she would do the Walk because of all the children and families who had not been so lucky. She had walked for seven years and last year spent some time walking with a man who had started with the first walk and was still going 24 years later.

“I’ve got IBS.”

Then I started to talk about Jane and NET cancer and the reason I insist–unlike most others–that the money we raise go to NET cancer research because of how little we spend nationally on that form of cancer. As I talked about the symptoms a worried look crossed her face.

The body of NET cancer

“I’ve got IBS (irritable bowel syndrome),” she said. In that moment the room shifted and vanished for me. She told me her doctor thought what she had was Celiac Disease but

that the diet they put her on hadn’t entirely solved her stomach issues. She talked about her insomnia and low blood pressure. At that point I reached into my bag for the pamphlet we printed on IBS and NET cancer. She looked at the flushing symptom and said she still had hot flashes even though menopause had ended for her four years ago.

…why we walk 26.2 miles in a single day…

I told her I was not a doctor but that I thought she needed to go have the 5-HIAA urine test done that checks for excess levels of serotonin. And I told her that, regardless of the outcome of that test, she needs to keep looking until she finds out what was causing her IBS.

The soul of NET cancer

And I tried to give her hope that if she does have NET cancer we know much more about it now than we did 27 months ago. We parted company after the speeches. She left and I sat down. One of the last things she said before she left pin-balled around my brain: that she felt we had been fated to meet that morning so she could hear about NET cancer. For her, that brunch was a positive thing.

…but the tenth always finds a new way to put in the knife and twist.

For me, it was a bag of mixed nuts. I’m always glad when I can find a way to help someone with NET cancer–or who may have it. But in the aftermath I am always back in the hospital with Jane at the end. My heart wants no one to endure what Jane did. But my mind knows we are not there yet–that for all the progress we have made, for the all the treatments in the pipeline and the improved understanding in the laboratories, 12,000 people are still going to die of NET cancer this year. And likely, a similar number will die of NET cancer next year and the year after that. And none of those deaths will be any easier than Jane’s.

NET cancer hope

Still, if we catch the disease early enough and start treatments soon enough, for many of those diagnosed this year we may be able to buy them enough time to make them whole and healthy again. Maybe then I will stop seeing Jane’s end after I leave someone with that specific set of symptoms.