“Consequently, the average age of death in individuals with MEN1 is significantly lower (55.4 years for men and 46.8 years for women) than that of the general population.”
In August, I’ll enter the eighth month of my 46th year. And I have MEN1.
Since the first one was diagnosed my senior year of college, I’ve had five pituitary tumors. As a by-product of this disease, I’ve also had my bones eaten away (shoulder and hip replacements), countless biopsies, numerous other surgeries, kidney damage, osteoporosis…the list goes on and on.
The discovery of parathyroid tumors in 2016 (my least favorite year ever, hands-down) confirmed a deep fear: I had the disease that attacks the endocrine system, which means, among other things, tumors grow in my pituitary, parathyroid, and, in many cases, finally the pancreas.
Tuesday
“Don’t worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.”
I love the column by Chicago Tribune columnist Mary Schmich so much that I painted the words on a wall in my home. My daughters know the words by heart as well.
(My daughters. I cannot begin to write about that yet.)
It was a Tuesday about eight weeks ago when my doctor’s office called. I was at our local Habit for Humanity Restore, looking at paint. “Well, Jenn, the news isn’t great,” is how the conversation started. It ended with me sitting on the shelf alongside the paint. When you feel the bottom of your world pulled out from under you, any seat will do.
I had no idea that I was sick again; I didn’t feel good, but my levels indicated that I was actually worse than before my surgery in November of 2016. It also meant that the disease was progressing; there aren’t going to be years of reprieve between occurrences.
Perhaps there won’t even be years, period. That’s the scary part.
The successful navigation of the first stage of grief was over — denial wouldn’t be possible anymore.
How you can help
For the most part, we’ve not discussed my illness widely. I’ve told a close circle of people, giving them time to process; to come to their own acceptance. Initial responses of “no,” and “this is unacceptable” have now become, “I will be there with you every step of the way.” Those words are more difficult to hear than I can explain.
Everyone wants to help or know what they can do. I’m grateful, because there are things you can do:
1.) Vote. Vote for the people who won’t make it possible for insurance companies to deny care, or to price people out of care. Battling this condition is exhausting; battling legislators who roll out beer kegs to celebrate stripping health care away is mortifying. I don’t have enough “fuck you’s” to give to them. In the district where I live, my reps — who, unlike illness, do discriminate — refuse to meet with me, or explain their votes. So please, wherever you live, vote for the people who care about other people.
I don’t want to hear, “I’m so sorry.” I want to hear, “I voted.”
2.) Donate. Donate to the causes and organizations that help protect our democracy, our people, and our environment. Please consider Resistbot if you’re wondering who to donate to — the work they are doing is incredibly important, and is reliant upon a group of volunteers who are some of the most badass people I’ve ever had the opportunity to know.
3.) Volunteer. Get involved with organizations that stand for something. One of my personal favorites: Moms Demand.
4.) Be a good human. Practice kindness. Pay things forward, even if you aren’t sure you have anything to spare. Feed the squirrels and birds. Adopt or foster a pet or twenty. Tell people you love them.
(I’d be remiss not to mention The Carcinoid Cancer Foundation; if you’d like to donate to further research of endocrine cancers, this is a great org.)
