(Editor’s Note: Two new links were added to the Resources page today. Two new events are scheduled to be added to the calendar today.)
One year ago today, Jane and I made our first trip to the Dana-Farber Cancer Institute in Boston.
We had neen to the local clinic in Fall River already. We had learned about a drug trial, but the size of the tumors in her liver had excluded her. That rejection had put a chill in both of us: it said the disease was so far along that there wasn’t much hope.
But Jane was a fighter. She wasn’t going to give up. Nor was I. We were going to the best place on Earth for the cancer she had. We were meeting with someone who had done more than read about the disease somewhere.
We were terrified. We were terrified because we figured this would be the day the other shoe would drop—the day someone finally said to us, “Look, you have no chance. We found it too late. There is nothing we can do. You should just go home, put your affairs in order, say your good-byes, make yourself as comfortable as you can, and prepare for the end.”
Instead, we met Dr. Jennifer Chan, who was not yet Jen to either one of us, but who would become not only the best doctor we could have found, but the best friend we could have asked for.
Jen listened to Jane that day. My job was to take notes and ask the questions no one else thought of or that Jane could not bring herself to ask. We’d made a list. I ticked off each one as it was answered.
And then Jen made clear that she thought this was not a lost cause. But she wanted to have Jane’s heart checked because sometimes NEC damages the heart.
We went into that appointment convinced we had days—maybe weeks. We came away believing we had many months—and perhaps years. In fact, knowing the pace at which knowledge of everything grows these days, we both came away believing, for the first time in months, that there was a future in which Jane would beat this cancer—and that we would have a long and happy retirement together—just as we had always imagined.
Jane got her first injection of octreotide that afternoon. We knew it was not a cure. But we also knew it might slow the disease, give her her appetite back, and put the brakes on the diarrhea that was becoming increasingly debilitating.
When Jane asked me to stop to get something to eat on the way home because she was hungry I wanted to dance into the restaurant. And when she finished her sandwich without complaint, we both practically floated home.
Three months to the day later, in a hospital room in the cardiac intensive care unit at Brigham & Women’s Hospital, Jane would wake up just long enough to hear Jen tell us that there was nothing more they could do than make Jane comfortable. Thirty-two hours later Jane would defeat her cancer in the only way she had left—by dying and taking it with her.
We learned a lot in those three months. We taught a lot in those three months. We made a lot of friends in those three months.
But I never want anyone else to learn those lessons or teach those lessons or make those friends in that way.
So this site exists; I make donations; I talk to whoever will listen; I take long walks wearing t-shirts I would never have worn before—all in the hope that through those actions there will come a day that we have a cure for this—so that for someone else out there there is a way to defeat this disease without dying and taking it with them.
