My good friend Joseph Linaschke, who photographed me during my treatment for breast cancer, is Kickstarting a book by breast cancer patients for breast cancer patients: “Beauty After Breast Cancer.” I'll be in it, along with many other women living their lives post-diagnosis.
Like many of my fellow breast cancer patients, the treatment I received (and am still receiving) places me at high risk for a condition called lymphedema that can cause painful and permanent swelling in the arms.
To help prevent lymphedema or control the swelling if it does happen, many doctors recommend we use compression sleeves. It used to be that the only kind of sleeves available looked like big ugly bandages, but LympheDIVAs, a company started by two women with breast cancer in Philadelphia, was one of the first to change that. LympheDIVAs creates sleeves and gauntlets so funky and pretty, you could imagine wearing them just because they look cool. I wear their product regularly, and have found them to be pretty great.
When I put on my "Lotus Dragon" one, people think I have an actual sleeve tattoo, which cracks me up. When I first started wearing it , I tweeted that it would also be fun to see Diesel Sweeties comic creator R. Stevens, who designs fun patterns for socks, gloves, and other wearables, create some stuff for LympheDIVAs. I am thrilled to learn that this happened! R. Stevens has designed four sleeve/gauntlet products for LympheDIVAs, and they all look great.
Last month, on her Facebook page, she wrote about the experience of being a breast cancer patient since 2010:
"Unfortunately the last 18 months have been a real challenge for me having breast cancer and MS and all the new places that will take you. You become sadly a patient in a world of waiting rooms, waiting sometimes hours for a result or an appointment. You spend a lot time in cold machines... hospital beds, on your knees praying for miracles, operating rooms, tests after tests, looking at healthy people skip down the street like you once did and you took it all for granted and now wish you could do that. I have not stopped singing throughout all this in my dreams and to be once again performing and doing what I love to do."
I had a rough week, this week. I came back from a transformative, restorative trip to Hawaii, where I did lots of creative work for Boing Boing and for personal projects. The morning after my flight home, I dove in to a week of medical tests. My primary treatment for breast cancer is complete (chemo/surgery/radiation), but that doesn't mean cancer's over. I have to take a drug for 5 years (or more, who knows), and there is at least one more surgery ahead that I know of.
But there is also much monitoring ahead. I have to get various blood tests and exams and scans every 90 days, 6 months, and annually. Scanning my body for any new cancer, scanning the horizon for bad news, and hoping it never arrives.
The big thing this week was tumor marker blood tests, which are used to see if your blood shows signs that cancer is returning and progressing. The tests are very much imperfect, a blunt and controversial tool. What they tell us is a matter of debate. Some oncologists don't even use them. Mine does, and I do respect why, and I comply.
When I received my tumor marker results, I flipped out, even though my oncologist's office told me they were "fine." The numbers showed a slight increase in my tumor markers. How the fuck can that be fine?
My friend Lisa Adams, who coached me through so much of my treatment for breast cancer, recently learned that her breast cancer returned as metastatic disease. She has been writing about cancer eloquently and beautifully since she was diagnosed, and so much of what she's published since her disease advanced has been powerful, brutal, essential reading. Her most recent post, which appears on HuffPo, is about an hour-long talk with her daughter that started with her first question, "Are you scared?"
She asked questions about genetics and risks of getting cancer to what kind of treatments I might need. She asked me again, as if to confirm for herself, "It's not curable, right?" We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.
I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it's normal. That sometimes that fear makes you brave enough to do things you don't think you can otherwise do.
I told her that I understood that sickness could be scary, that I didn't want her to be afraid of me as I got sicker someday. "I would never be afraid of you, Mom. I'm only afraid of cancer," she said. My heart squeezed and thrashed and the tears flowed.
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Last week, the Chicago Sun-Times first exposed allegations that "Boobies Rock!," a for-profit business that purports to fund-raise for “breast-cancer awareness” in Chicago and around the US, wasn't actually funneling funds to charities it claimed to benefit.
At left, the president of Boobies Rock!, Adam Shyrock. I don't know what could possibly not be forthright about a breast cancer "awareness" effort run by a guy who looks this douchey, especially when the project, which is about an awful terrible disgusting disease that kills people, is called "Boobies Rock!" (the exclamation point, it should be noted, is part of the name).
The daily PRI radio news program The World will soon air a week-long series about cancer's global reach.
From what host Marco Werman sent along, it sounds like a really great reporting series, and I'll definitely be tuning in.
Here's a preview of one episode that focuses on cancer care in Uganda. More below.
New evidence of ‘chemo brain’ proves cognitive damage from cancer treatment isn't ‘all in your head’
Cancer survivors everywhere are nodding in agreement today: "chemo brain" is real, as those of us who have experienced the cognitive damage associated with chemotherapy already know. Memory loss, problems with concentration and attention, speech and writing difficulties, even problems with everyday math or number identification are common during and long after chemo ends. But now, researchers understand a little more of the how and why.
As noted in my previous Boing Boing post, a new study presented this week at the annual meeting of the Radiological Society of North America (RSNA) used PET/CT scans to show physiological evidence of chemo brain, a common side effect in patients undergoing chemotherapy for cancer treatment.
The team led by Dr. Rachel A. Lagos at the West Virginia University School of Medicine and West Virginia University Hospitals in Morgantown, W.V. sought to identify the effect of chemotherapy on brain function, rather its effect on the brain's appearance. By using PET/CT, they were able to assess changes to the brain's metabolism after chemotherapy, and found measurable physiological changes.
In a group of 128 breast cancer patients, neuroradiology analysis software was used to calculate brain metabolism within 63 brain regions. Results were clinically correlated with documented patient history, neurologic examinations, and chemotherapy regimens. In women treated for breast cancer, the scans demonstrate "statistically significant decreases in regional brain metabolism" that correlate to "chemotherapy regimen, neurological examination and symptoms of chemobrain phenomenon."
On NBC Nightly News, cancer survivor and advocate Jody Schoger, whom I met on Twitter during my treatment, speaks about her experience with chemo brain and what the news means to her. She's an eloquent, powerful voice for all of us who suffer through the long-term side effects of treatment, and the challenges of living with this disease. NBC's science correspondent Robert Bazell did a great job with the story. You really gotta see this piece.