Kathy Schoendorf
DePere, Wisconsin
In 1984, at the age of 29, I was diagnosed with breast cancer.
I underwent a right total mastectomy with complete lymph node dissection followed by radiation therapy (cobalt at the time) to the chest wall, clavicle, and axillary area, and one year of chemotherapy. Up until 2013, I had periodic episodes of lymphedema flair ups, exacerbated either by sunburns, overuse of the extremity, or injury. I sought out professional treatment as necessary, performed self-massage during flair ups, and wore a compression garment off and on.
However, my radiation therapy had caused another injury called brachial plexopathy; damage to my right brachial plexus that controlled the nerve innervation to my right arm. I had gradually lost feeling in my hand over the years following my surgery and treatment. Being right-handed, this posed quite a problem for me performing my duties as a registered nurse in a hospital. I sought out possible answers by seeing specialists, having EMGs performed to diagnose the level of nerve conduction and even going through carpal tunnel surgery thinking that it was the source of the problem, but to no avail.
Finally in 2002 an MRI diagnosed the problem as the brachial plexopathy; I finally had a formal diagnosis for the loss of use of the hand. I had slowly taught myself to use my left hand to write, to eat, to dress, and to do whatever was usually necessary with my right hand. The arm became weaker and more useless over time as well; I couldn't even open a door with the arm because it was too weak.
In 2013, my fingers began curling into the palm of my hand and I could not open my hand without really working on it. Another MRI showed that I may have a tumor on my brachial nerve. I needed surgery to find out if I had a cancerous tumor, but it could cause more serious lymphedema. I underwent lymphedema massage by a therapist several times before my surgery, hoping to ward off complications after. I underwent the exploratory surgery of the brachial plexus only to find out it was not a cancerous tumor, but hundreds of tiny cysts surrounding all the nerves; something the renowned specialist had never seen before.This was good news with bad consequences.
Unfortunately, the surgery caused pronounced chronic lymphedema that required weeks of professional treatments and daily treatments of manual lymph massage followed by a sequential compression sleeve every day for 1-2 hours. Yes, my life was spared by the breast cancer treatment, but the quality of my life decreased and continued to change for the worse over time. I am angry and bitter about this even though I am still alive.