Alex Brown has been on an involuntary medical adventure for more than half her life. Now only 28, beginning at age 13 she was hospitalized for medical conditions, such as vomiting blood, that were attributed to mental rather than physical issues. Misdiagnoses followed that pattern, including bipolar disorder, depression, and anxiety, for which she was prescribed psychotropic medications that, she said, make it a challenge to remember much of her teenage years.
It was therefore something of a relief, she said, when last year she was finally diagnosed with Ehlers-Danlos syndrome (EDS), a disabling genetic disorder once thought to be extremely rare with a prevalence fewer than one in every quarter-million people but now, with advances in testing and identification, known to affect at least one of every 5,000 people. EDS is a connective-tissue disorder with various subtypes causing trouble almost everywhere in the body: joints, muscles (including the heart), skin, and even eyes. Often it is found present (“comorbid”) with postural orthostatic tachycardia syndrome (POTS), an autonomic nervous system disorder where heart rate deviates far from normal, as well as gastrointestinal functional disorders, hernias, asthma, pneumonia, and osteoporosis. Brown said she has gastroparesis, which interferes with her ability to feel hunger, digest food, and gain nutrition, and her doctors are pretty sure she has POTS.
Because of her EDS, she broke ribs and in the course of treatment for that, she said, her doctor discovered suspicious lumps in the lymph nodes near her collarbone, starting a diagnostic process in January that led to confirmation of cancer on April 1 — she delayed telling anyone until the next day, she said, for fear they would think it was a cruel April Fools’ joke — specifically classic Hodgkin’s lymphoma, nodular sclerosis subtype, at Stage II-B. (Stage II here means that while there is more than one tumor they have not spread over too wide an area, and B means that additional symptoms have been noted, such as weight loss without trying.) Although there can be substantial variation among individual patients, five-year survival rates in the statistical aggregate are 93% to 95%.
Brown has long been involved with artistic and creative communities, especially the Rocky Horror Picture Show casts in Providence, the RKO Army, and in Boston, the Full Body Cast. Under the name Pawsome Perlers, she crafts by hand and sells unique beadwork depictions of dogs and cats as well as movie themes, and is holding a “F— Cancer Vendor Fair Extravaganza” at the Middleboro Elks Lodge on Sunday, August 18. Several dozen of her friends will also be selling their products, almost all individually handcrafted: paintings, sculptures, T-shirts, custom enamel pins, toys and dog toys, crocheted and knitted yarn, and many other similar items.
Admission to the vendor room is free, and three performances throughout the day are planned on a “pay what you can” basis: a drag show and live performance “shadowcastings” of The Rocky Horror Picture Show and of Repo! The Genetic Opera. RKO Army is coordinating the live performances, but members of casts from Boston and as far away as New Jersey and Pennsylvania are coming to donate their time on stage. Live streams of the performances are planned. “There will be raffle baskets and silent auctions, too. Barry [Bostwick, who plays the role of Brad in the Rocky Horror film,] should be sending signed undies,” Brown said.
Brown lives in Massachusetts, so she is covered by MassHealth which “is wonderful, and they’re paying for it, but they don’t pay for everything that comes with cancer. They’re paying for my medical bills. I haven’t been able to work for ten months because of my Ehlers–Danlos. I’m not asking for handouts or anything, I understand times are tough for everyone right now. I’m just like, ‘Here, buy my things, they’re pretty.’” She said, “I have cancer now. It’s hard figuring out how to survive. I’m very, very lucky.” She and her boyfriend Dean Anderson live with her parents and his company, Fox and Crow Creations, is co-hosting the event, Brown said, but “they’re planning to sell the house in a year and a half, so that means that we need to find a new place to live within a year and a half as well. We’re looking to buy a house and not just get a place to live. So it’s just, like, everything. Yeah, existing is a lot.”
Once she knew chemotherapy would be indicated to treat her cancer, Brown decided proactively to cut off her long, red hair to make a wig. “My hair is starting to fall out. It sucks. And I’m not gonna lie: I’m very happy that I stuck to my guts of ‘Nope, I’m gonna shave my head.’” Brown’s friend Savannah Shearouse, a professional hair and makeup artist in New York City, “says that they’re gonna make a wig for me. ‘I got it covered, it’s fine.’” Brown said, “I’m not gonna be delusional and all that, ‘Oh, my hair’s not gonna fall out. I’m gonna be one of those lucky, very few people.’ Some people were like, ‘Why don’t you just cut it short?’ And I was like, no, let me live my life. There are patches on my hair and everything, so I’m glad that I listened to myself… Usually, apparently people have to buy extra hair. Savannah doesn’t think that they have to buy any extra hair… It was really heavy, I forgot how heavy it was. It was quite a few ounces.”
Attend the F— Cancer Vendor Fair Extravaganza on Sunday, August 18, 11am – 9pm, at the Middleboro Elks Lodge, 24 High St, Middleboro, MA. For more information, visit bit.ly/3K9AqoN
