1991 (ish) - I played volleyball at an EDF staff retreat and this huge bruise appeared on my right forearm. I had it checked out when I got back to Boulder. Every five to seven years, I got it looked at. The answer was always the same: a venous malformation. Nothing to worry about. I could get it fixed if it bugged me, but it wasn't life or limb threatening.
April 2013 - family went to Vernal for 5 days. Ben told me I couldn't come mountain biking because my arm would start to swell and then I'd want to quit and he and Bill would want to go further. That was it. I decided I needed to get my arm fixed, so that I wouldn't miss out on activities w/ my kid. - Saw vascular surgeon in Denver who sent me to interventional radiologist. Radiologist ordered MRI and then does an ultrasound guided needle biopsy. Lots of trips to Denver. New diagnosis -- some kind of fatty tumor, but not a venous malformation. He sent me to a plastic surgeon.
Here's a photo of me from Ben's school's auction. You can see the lump on my arm:
June - Plastic surgeon sees me and schedules surgery for August 1st.
8/1 - Tumor removed and site on my arm covered with a skin graft taken from my upper thigh.
8/12 - Surgeon calls to say that pathology report suggests "mesanchymal neoplasm with cytologic atypia." I.e., they don't know what the tumor is, so they've sent it out for 2nd opinion.
8/14 - Surgeon calls again. New diagnosis of myxoinflammatory fibroblastic sarcoma. Refers me to a different surgeon. I'm at a water conference for the day and tell friends there, all of whom are very sweet and surprised. Barney White emails with some folks he knows to find names of oncologists who may be able to help. I go to a reception and fundraiser and talk to more people, all of whom are, again, kind, surprised, and sympathetic. I go to Ladies Night, which is the same. Marilyn starts emailing to get names of specialists. The fog begins. WTF?! How did I end up with cancer? Especially from something that's been there for 20 years.
8/15 - Bill and I go to Denver to talk to the new surgeon. Here's the problem: The surgery done on 8/1 was not done as if the tumor was a cancer. With cancer, surgeons take not only the tumor but a "safe margin" of a few centimeters to make sure they get it all. That didn't happen. The pathology report says the malignant sarcoma cells extended all the way to the edges of the tumor. So, there is a high probability that the surgery left cancer in my arm. And, it must come out or it could spread.
The surgeon describes a surgery to take out more of my arm to get that desired "clean margin." Doing so will require removing some muscle (something that didn't happen in 1st surgery). Muscle doesn't grow back, so removing muscle results in a loss of function. This muscle allows me to flex my wrist up, and to wiggle my fingers. This surgery would be the first step in this process. Because it would go so deep, a skin graft couldn't be done at the same time. Rather, the wound would be bandaged and left to heal for 6-8 weeks. Then there could be another surgery to put a skin graft on. After that healed, I could do physical and occupational therapy. After six months, we'd have a better idea of how much function I had lost, because PT and OT would help me regain strength and teach my remaining muscles to compensate. Only after that process would there be consideration of reconstructive surgery.
Bill and I leave at 2, after 90 minutes there. He asks if I want to get lunch. ARE YOU KIDDING?! I'M HANGING ON BY A THREAD NOT TO HAVE MY NAUSEA OVERWHELM ME. He agrees. I go back to my conference. He goes home where Ben won't even let Bill give him a report. Bill goes for a bike ride to process.
Safe to describe the house as very quiet this evening. Shell shocked. Annie and Emma come by to talk; everyone is trying to process. Mike and Jen come by with tequila and chocolate -- so lovely.
I cry for the 1st time when I have to tell my mom over the phone. I make contact w/ my long-time internist, who was on sabbatical for the last six months. She's terrific and promises to do research and be back in touch. Shabbat shalom, sort of.
As many of you know, I'm pretty sleep challenged to begin with; little sleep happens. One reason is that -- for the 1st time since the surgery, my arm hurts. Is that psychosomatic or what?! Since two days after the surgery, what hurt was the skin graft donor site on my thigh, not my arm.
8/16 - Vicky Mandell and I go for a walk at Chautauqua; she gives my arm a kiss (the power of a mom's healing). Ben goes to climbing team try outs. We do errands. I have a long conversation w/ Shelly, my sister in law, which is comforting, sort of, because nothing really is very. Lots of time on the computer doing research. A conversation w/ our neighbors, Laura and Kal; we've been so busy this summer (them more than us, but both) that the 4 of us haven't sat down together once, and we're all rolling our eyes that it's taken a cancer diagnosis to make that happen!
Later, Ben stays home for pizza and watches a dumb movie on Netflicks. Bill and I go out for dinner and then see Woody Allen's new movie about a woman whose life really falls apart. Bill comments that it's very depressing (although Cate Blanchett is terrific). But, we agree that it's somehow comforting because her situation makes mine look not quite so bad by comparison. I take a sleeping pill which is the right thing to do.
8/17 (today) - I take Val up Sanitas and Bill goes for a long bike ride, even though it's pretty hot. I spend the rest of the day talking to people (Susan Hadley, my law school roomie from Boston; Eve Bluestein, a surgeon from here; Shelly, my mom), emailing (Hillary, my doc; folks on the sarcoma list serve) and doing more research. Everyone is talking to their go-to experts for advice. The emerging consensus is that I should go to MD Anderson in Houston for a 2nd opinion about treatment course and options. Of all the sarcoma centers in the country, it's the one in a city where we really know no one. But, it's also the best. So, that'll be the task for tomorrow.
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