As you may know from my vague and sporadic tweets and all my allusions to stress, last week was a tough one.
See, the day before we left town for Greg’s grandfather’s funeral, we got a call from my parents after one of my dad’s routine pancreas screenings. He gets those about four times a year. The short story is this: About 10% of pancreatic cancer cases are hereditary, and my family’s one of those affected. My father’s mother, brother and sister all died before the age of 70. After my uncle Bruce died several years ago, we discovered the Lustgarten Foundation for Pancreatic Cancer Research, and it has given my family something to rally around instead of feeling like walking cancer time bombs.
One of the main reasons pancreatic cancer is so deadly (95% of patients don’t survive five years) is that the cancer is asymptomatic until it’s too late. And if there isn’t a familial link, there’s no reason to do the invasive, expensive screenings to test for it before symptoms arise.
So the bitter irony of the story I’m about to tell you is that the only reason my father gets routine screenings is that so many of his loved ones died young.
Dad, and some of my older first cousins, participate in a study of hereditary pancreatic cancer that’s funded in part by the Lustgarten Foundation. At his last screening, about ten days ago, his local doctor in Albany, NY, found a mass in the tail of his pancreas. They sent the results to the leader of the study at Johns Hopkins, and she said she wanted to see Dad as soon as possible. Six days later he flew down to Baltimore for more tests. It was the day after Greg and I returned from the funeral.
That one full day waiting at home was one of the most stressful, trying days of my life. There was nothing to do. No emergency flight home to arrange. No doctors to call. Just me and my overactive imagination, doing dances around each other.
I did my best to hold myself together. I didn’t pace too much. I spent lots of time on the phone with friends and family.
Irony, however, seems to be the theme of the month. Season 3, Episode 5: The Bonding. The entire damn episode is about a boy whose mother died on an away mission, leaving him an orphan. Wesley Crusher, teen phenom with some astonishing ’80s coifs, played by Wil Wheaton, was brought in to talk to the boy about his own father’s death a few years earlier.
Seriously, people. Give me a break.
I lost my shit.
Actually, don’t let my overdeveloped tendency toward melodrama fool you. It felt pretty good to lose my shit. I love fiction for its ability to help us work through the confusing and overwhelming plane of reality. As Wesley talked about his anger and his grief, I sobbed and thought about how much I love my dad. I acknowledged how terrified I was that the tests would show a metastatic tumour. That the prognosis would be grim. Grim prognoses are what we’re used to when pancreases are involved.
Poor Wesley Crusher was like the Dawn Summers of the late ’80s – decried as a dreadful whiner and as just plain annoying – but after the moment we shared the other night, I’ll forever be his champion.
I got a call much earlier than I expected the day of the tests. It was my brother, who told me it seemed to be good news. Excellent news. Preliminary findings didn’t indicate cancer at all. No dire prognosis. No emergency flying.
My dad still needs surgery. At a minimum, he needs to have the tail of his pancreas removed, and along with it his spleen. He’d like to take the whole damn organ out, which is something people with a family history like ours can do. If he’s able to work that out with his doctors, he’d live the rest of his life like a diabetic, dependent on insulin and also digestive enzymes to survive. But he wouldn’t feel like a time bomb anymore. He’d know he wouldn’t again experience the same terrifying shock he did this month.
And all this six weeks or so before the annual fundraiser. The fundraiser that takes on new meaning for me this year because I credit the study, and the foundation whose money helps fund it, for catching my father’s tumour before it could morph into a deadly beast.
The boy on Star Trek was twelve. I may be thirty-four, but I’m certain I’m too young to lose a parent. My parents have a lot of life left to live.
So this year for the fundraiser I’m again asking you for money. Even the tiniest donation can go a long way, but I know times are tough and you have your own causes to support. So I’m also asking you to go shopping, which as we all know is different. Some very special crafters have volunteered to donate some or all proceeds from some of their products to the Lustgarten Foundation as part of my campaign. They rock, and you probably want their stuff anyway. If you’re a maker, please consider donating some proportion of the proceeds of something you sell. This way you can jack up your prices, and help to spread the word about this very important research. If you’d like to participate, please fill out the form in the middle of that page, or drop me an email.
Right now the research supported by these funds is important to me and my family in ways I hope you can understand from this post, but as the research advances I hope it will produce answers that will be important to absolutely everyone.