The story of Lynne
It started in 1981, when I was fourteen. I went to the orthodontist and he placed four spacers on my molars. They dug deeply into my cheek. One wound developed a hard ring of tissue around it. That was my first sarcoma. That was the beginning of this long haul.
Over the next thirty-four years, I’ve developed two desmoids and two additional fibrosarcoma plus a few other lesions that haven’t been biopsied yet. Axilla, triceps, abdominal wall, left thigh, right calf, right supraspinatus, etc. I’ve undergone thirty procedures including resections, skin grafts, two facial free flaps, chemo twice, radiation twice, harsh drug therapies, complications, infections galore. There have been hundreds of scans. As you can imagine, over time, it wears you down. The disease progresses and becomes more disabling. It marks the body with difference, I don’t like the word “disfigured.” Cold weather is always cruel and exhausting. There is the financial part including medical bankruptcy. Sigh. The cost of this over decades means that there aren’t any savings. Sometimes, it’s a matter of raising charitable funds to pay medical bills.
Nonetheless, I’m determined to live well. You adjust and the illness dictates the pace of things. Some days it knocks you flat and other days you function reasonably well. You seize these opportunities. You develop strategies to deflect the pain. I’ve worked, made art, nurtured a marriage, loved friends and family and other animals. I achieve and I contribute, but I couldn’t do this without my helpers.