And now it is fully a part of my lexicon. Crazy.
Matthew Coll and his team rode 192 (or was it 196?) miles from Sturbridge Village, MA to Provincetown, MA (Pan-Mass, get it?) to both raise money for, and bring awareness to, Dana Farber Cancer Institute and the work they do to figure out, hold back, and cure cancer. Matthew himself raised $15,325!!
It was nothing less than overwhelming to tearfully greet Matthew at the end of his ride, see my name written on his leg, my logo on their jerseys, and watch the hordes of multi-aged riders, each with their own story of why they do this, as they arrived in Ptown. Thank you Matthew, for your commitment and your love.
So feckin’ A, now I have to do it! Hoping to be hearty enough to start training in the early spring… If I can ride around Lake Champlain, which I mostly did with Vermont Commons School (sometimes Chance made me drive the truck 😉 like during the bad hills… oops), then I can certainly can ride across Massachusetts despite the fact that the Circum-Champlain ride was oh, 10 years ago, right???
One More Cup of Chemo ‘fore I Go…
Been listening to some Dylan of late.
Yes, folks, this Sunday will be my last chemo. Then a few weeks off, and… SURGERY? I was trying to see what I have written about my thoughts on mastectomy prior, but my laptop has decided to not let me scroll so excuse me if repeat myself.
So when I learned of this new venture called IBC which would almost but not quite take over my life, I was told that I would have to have a mastectomy. While some folks want to hang on to that second boob, I am more of the mind to go symmetrical and flat.
Reconstructive surgery is brutal with IBC b/c they do a “non-skin sparing” surgery. You see, we have breast tissue all the way to our collar bones and halfway down our ribs. And as you have learned in past IBC lectures here, but which I will reiterate so you don’t have to find out the scrolling feature in your laptop has died as well, this pesky cancer grows its own blood and lymphatic system, thus spreading out into all that fresh territory. So the surgeon takes as much skin as she can and still be able to sew you back up.
The choices then for reconstruction are: 1. do an abdomenoplasty (yes, now I remember that I told you all this before) and move all my baby fat up on to my chest in a 12 hour surgery and give me that bikini body I have been craving since age 12… nah, or 2. cut wings of muscle and skin off of my shoulder blades and wrap them around onto my chest and put implants under them, thus leaving my shoulders weaker. Having virtually no upper body strength I am thinking I won’t give up what I already have.
I then make my decision to go with a bilateral mastectomy whereupon I am told by the IBC gurus that their standard of practice is to do one now, one later, so you don’t take the chance of getting an infection in the good boob and putting off radiation. Six months with 1 boob, two surgeries, two anesthesias, two recoveries. Ugh.
So I do some research on national averages of infection in unilateral vs. bilateral mastectomies nation-wide: 4% uni, 6% bi. And that’s national with regular joe blow surgeons, not MY Dana Farber surgeon. And then I realize, 6 months til the next? I am going to have to pay my high deductible all over again! Not sure any of you have noticed but I haven’t worked in over a year (okay, I have worked but I haven’t made enough money to offset what I have put into the biz).
Now, I have gone to Dana Farber several times with ideas for variations on my care (ie. can I get ANY of it in VT?) and have been shot down (rightly so) by their arguments. So, I didn’t have a whole lot of faith that this time would be any different. BUT IT WAS! My surgeon said that while she preferred not to do a bilateral, she would due to my stellar reasoning and research (my words) and assured me I would be fine! As Martha said when I texted her the news “Yay, funny thing to be jumping up and down about.” Yeah, oh boy!
Then last night I was texting this update to Mo and she texted back “Good for you for winning the bilateral insurance fight.” Wait, what?? Do I have to fight insurance for this?
Back to the drawing board…
A Much Cheaper Way to Gain a Waist than Abdomenoplasty
First, you make friends with the new girl in 6 grade after the teacher comes in and says we have a new student and she is VERY tall, please be nice to her. I took that as a personal directive from God (aka Mrs. Cryzanowski) to me and was answered with a life long best friend!
Fast forward about a million years and she and her husband start a stylin’ clothing line called “All Topped Off”. This was in the early internet years, they got hacked, chaos ensued and a few years later they folded (get it, they folded?) and were left with lots of cool clothes (which you can now find on Poshmark, though I couldn’t when I tried… Kath?).
So Katrin (as I call her) and her husband Ed flew in from Texas last week to visit and brought me, you guessed it! A waist! I have NEVER had a waist, just a straight line from chest to ribs to hips, the unfortunate combination of my mother’s early lovely little waist and my father’s manly non-existent one. But check this out! and it didn’t cost me a penny. In fact it is a bennie from the culmination of 48 years of friendship (and she’s still way taller than me).
A Different Kind of Overwhelm
As I sat with Martha, Roger, and Luke in a shady bar in Provincetown after celebrating with Matthew and Rebecca, I received the very sad news that my step-nephew Chandler, 35, had died after a short illness.
Chandler was a remarkable guy. Born with osteogenesis imperfecta, a genetic disorder that causes one’s bones to break easily and to grow in a misshapen manner, Chandler had countless surgeries (like really, countless), got around via a very fancy electric wheelchair, was brilliant, and had a wicked sense of humor. He insisted on being independent, living in Boston, with a recent dream of moving to Seattle, the center of the gaming world.
We often bemoan the internet for our various personal reasons, many of them valid, but the internet provided Chandler with a vibrant social life, and his presence there provided so many with friendship and laughter. Reading the responses to the news on his FB page, I was floored by the 20 year relationships he had with people he had never met face to face but whose lives he enriched (and was enriched in turn) with his ideas, his humor, and his doggedness and who are devastated by his loss.
I am heartbroken yet again for parents and siblings who have to face a world of grief, this time Robin, Mickey, and Molly.
Toni Morrison died yesterday and Twitter has this quote:
“We die. That may be the meaning of life. But we do language. That may be the measure of our lives.”
Being physically restricted by OI, Chandler did language. And he measured up. Cheers Chandler and bon voyage.