Jimmy Fund Radio Telethon time

Listening to the WEEI/NESN Jimmy Fund Radio Telethon is something Jane and I did every year. We did what we could to support the Dana-Farber Cancer Institute through that fund regularly. We never thought either of us would need the very special services they provide cancer patients. Cancer did not, seemingly, run in our families. It was just the right thing to do.

…we still have work to do. 

Then Jane’s sister was diagnosed with Stage 0 breast cancer. It was caught so early and dealt with so quickly locally that DFCI was never seriously considered. That was true, in part, because of the research DFCI and other major cancer centers had done. Then we discovered Jane’s NET cancer and DFCI became the medical center of our universe.

The fairy tale that isn’t one

It’s one thing to hear the patient stories over the course of these two days. It is something else to live in one of those stories.  The dedication of the doctors and the courage of the patients sounds like something out of a Disney fairy tale.

Cancer did not, seemingly, run in our families.

Then you become a patient–or your spouse or your child does–and you discover just how special those doctors, nurses and support people really are. And you discover the deep reserves of courage you have and your spouse has and your children have. Human beings are amazing creatures when everything is on the line.

Doctors and nurses

I’ve walked people to the end of their lives more often than I like to think about. I’ve sat with too many people on the death watch, held too many hands in the final hours of life. I’ve met doctors who, even in those circumstances, were extraordinary. And I’ve met a few who needed serious sensitivity training.

Human beings are amazing creatures…

But I’ve never met a nurse who was not the soul of compassion at those moments. And I’ve never met a doctor at DFCI who was not just as compassionate and caring  and dedicated as the best of nurses. At DFCI, even the people behind the desk making appointments went through the compassion line three or four times more than the rest of us.

Case in point

I’ve told the story of our first visit with Jen Chan several times: how she and Jane seemed to immediately hit it off; how she immediately set up an initial octreotide injection and scheduled an appointment with an onco-cardiologist before we left the exam room.

…I’ve never met a nurse who was not the soul of compassion…

And I’ve told how she called just after we got home that night to talk about ideas she’d had about ways to proceed since we left her office. But I’ve never put it in the context of what the rest of her day must have been like. Jane was not the only patient she saw that day. She saw at least 16 other patients–not all of them NET cancer patients, since she was not working exclusively on NETs at the time.

Odds against

And Jane’s case was not a typical NET cancer case. Jane’s cancer was more advanced than nearly any doctor had ever seen. Her lifestyle had kept her alive with a liver that should long since have killed her. Only a handful of patients lived long enough to develop the heart problems she had. Her cancer was so far advanced, DFCI had turned her down for a drug trial.

…she and Jane seemed to immediately hit it off…

And Jen had two small children waiting for her at home. I can see her tucking them in for the night before picking up the phone to talk to us–two people she had just met that afternoon. Even now, I am awestruck by the person she turned out to be–the kind of person who would put the turkey in the oven and come see Jane on Thanksgiving morning when she didn’t have to.

Skin in the game

People mistake me for a hero sometimes. They think I’m being modest when I say I’m not. The truth is, when someone we love is in trouble, the adrenaline kicks in and we do what we need to do. I see it in a former student whose son was diagnosed with brain cancer and whose wife is now fighting breast cancer. I hear it in the voices of the parents on the radio talking about their child’s cancer. And I hear it in the voices and actions of the patients it is my honor to work with.

…I am awestruck…

But all of us–patients, spouses, children, and patients–have enormous emotional skin in the game from the start. We are, literally and figuratively, fighting for our lives and the lives of those we love. My life and dreams ended the day Jane died. Every day since has been about trying to find new dreams–trying to find a new life–absent her presence.

Defining unconditional love

But when Jen came through that door on that September morning, she took us into her heart the way we took our students into ours on the first day of school. It was something neither Jane nor I expected. We’d dealt with doctors for years, knew–and-to a degree understood–the reason they often stood behind a professional distance: patients die–patients with cancer more often than others.

My life and dreams ended the day Jane died.

Since Jane’s death, I’ve met a number of Jen’s colleagues at DFCI. They are all cut from the same cloth Jen is. They care about their patients the way nurses do–with hearts left open to the cold reality of death. I write about the need for unconditional love even for strangers. They practice that love every day.

Jealousy and joy

Sometimes, it’s hard listening to these stories on the radio over the course of these two days. Part of me is jealous just as part of me rejoices about the progress and cures that have evolved over the 14 years since they launched this fundraiser. The stories of the husbands and wives who speak on the air together about successful treatments and what those treatments have meant to them make me cry.

They practice that love every day.

But I know the fight is far from over. There are still too many stories that end badly–so many stories that end in a graveyard–so many cancers we have no answer to. And I know we still have work to do.