Desmoids and fibrosarcomas, pain, handicaps, cancer treatments, scans, doctors, and bills. It adds up to difficulties. Please donate!
It started in 1981, when I was fourteen. It was decided that I should have braces. An orthodontic spacer caused a puncture wound on the inside of my cheek. A lump appeared around it. What are the odds? I was diagnosed with aggressive fibromatosis, a desmoid tumor. My surgeon took it out and it came right back. He didn't understand the highly recurrent nature of it. He thought it was healing abnormally and that a different dressing might solve the problem. He scraped the tissue away and experimented. He tried a dozen somethings and each time the growth came back more aggressively. Another surgeon tried resecting it and putting a skin graft (taken from my thigh) over the site. That didn't work either. He tried it twice. The tumor came back. My cheek began to get thin and creased and part of the tumor started growing out of my lip. It was a strange nodule criss-crossed with veins. It itched. I started having terrible nerve pain.
In 1995, I went to Johns Hopkins Hospital. It was agreed that the tumor was worrisomely aggressive, so they radically resected it. They took away part of my cheek and lips and stitched in a piece of my right forearm--a facial free flap. Radiation treatments followed the procedure. I remember how red and sore the graft turned and how tired I was. I couldn't eat anything acidic. Not even a banana. The scarring and tightening began. From then on, I would have trouble eating and speaking. The tumor did not come back.
I was bankrupt and I had to give up on grad school.
The second desmoid tumor appeared in my left underarm in 2002. It was inoperable since it nestled against the axillary nerve. The pressure on the nerve provoked the worst pain I've known. For two years, I experienced whiteouts. That level of pain exhausts a person to a terrible degree. Treatments began. I started with chemotherapy, methotrexate and vinblastine. It stabilized the tumor, but I couldn't tolerate the side effects. I was really sick. Next, we tried high doses of a non-steroidal anti-inflammatory, Sulindac. Same result and same issues. I was taking an anti-convulsant for pain, but again, the side effects were awful. I tried other meds for pain, but it became apparent that I'm unlucky and pain meds are toxic and detrimental to me.
By now, I had lost over half the range of motion of my arm. These tumors are nasty that way. They send out tentacles and twist and knot the connective issues. The pain worsened. I'm a librarian and I had to shift to part-time.
Next up for the shoulder... radiation. The treatment was tough, but a month past it and my pain stopped. Snap. Just like that. Amazing. I might be disfigured and handicapped, but I felt that a big chunk of my life had been given back. I became more productive until winter hit. Cold weather is cruel to abnormal tissues. I sank again. Warmer weather brought relief.
In 2008, another tumor showed up in my left triceps. It didn't cause much trouble. It was small and slow-growing. My immune system was struggling from the cumulative effects of everything and I was getting sick often. I dealt with this and fatigue. Meanwhile, my facial graft continued to contract.
By 2011, I could only open my mouth 5 mm. I couldn't put it off any longer. I had to start facial reconstruction. I've had three surgeries in the last year and a half. It has to be done in steps. Sometimes, we lose the ground we've gained as the tissue contracts again. We took some tissue from my left forearm and more skin from my thigh to cover the loss. It's been rough. My face changes and I try to assimilate the differences. It's gruesome at times with the swelling, bruising, and bleeding. It can be demoralizing. There are complications and infections that send me back to the hospital.
Well, here we are at the end of 2012 and I went for an MRI to find out why my hips are hurting. Sure enough, there is another tumor. Walking takes a bit more effort, but I'm not giving up on it. I love to walk in gardens, woods, along streams, in the city. This disease will not steal that from me. I have to have more scans to find out the status of my old tumors. It feels like they are growing. The pain has worsened. The next few scans and assessments will determine whether or not I start a new treatment. A drug called Nexavar shows promise in treating desmoid tumors.
I saw my reconstructive surgeon too. The next procedure is complicated. He has to slice open a band of scar tissue, plug in a skin graft, and then take fascia from my thigh and connect it between my graft and temple. It's called a facial sling. Hopefully, it will give the graft the lift it needs so that I can control food and stop drooling. I'm at 12 mm now.
There is the disease itself and there is the legacy of the disease. Desmoid tumors are aggressive and wreak havoc on the body’s structures. Complications abound.
Phew. Somehow, in the midst of all of this, I found love. I married Chris. He and my family are incredibly supportive, but the financial cost of all this is out of bounds. We can't keep up. My hospital won't let me add any more bills to my payment plan. I owe thousands and there will be thousands more due. Some weeks I pay the bills and there is nothing left. We go without many things.
Despite this craziness, I refuse to let this disease define me. I'm still working part-time. I'm an artist--it’s how I best process my experiences. I love my cats and my garden. I love birding (birdwatching). I will not lose these things. I will be considered for my abilities and talents. I will enjoy time spent with friends and family. I will continue to learn what I can. That said, I acknowledge the toll the disease takes on my time, energy, will, and bank account. I’m angry and guilty that I can’t manage this on my own, but if I step back and look at myself, I can see I’ve been dealt a challenging hand. I need help. Thank you. xo
Addendum: Johns Hopkins just reviewed all of my tissue samples dating back to 1995 and they came to a startling conclusion. I'm having to make a huge mental adjustment. I have two types of tumors, desmoids and low-grade fibrosarcomas (most likely fibromyxoid). The new tumor in the leg is a fibrosarcoma and the protocol is radiation and surgical excision. Phew. Pricey and tough treatments and physical therapy ahead.