“My Voice” by Kelvin Lynch

Kelvin Lynch - 'Survivor'

My tumor first made its appearance when I was 25 years old. I was living in Atlanta, I was working at a hospital, and I was having the time of my life.  Suddenly, over the course of a few weeks, I started having sharp shooting pains down my right arm and noticed a lump in my neck, which seemed to be quickly growing larger. I went to my doctor, who ordered a CT scan, which showed a vague and rather large mass entangled in my brachial plexus. A few days later, the surgeons performed two aspiration biopsies, which were both inconclusive.  I was admitted to Grady hospital for a tissue biopsy. The procedure severed nerves in my neck and left my right shoulder and neck partially paralyzed.  The Emory Medical School surgeons who worked at Grady told me I had a fast-growing sarcoma, a malignant tumor, and I was told by a resident to get my affairs in order, because there was little that they could do for me given the location and progression of the disease.  I wasn’t upset and I wasn’t sad.  I was numb and in shock.  I had to call my mother and family to tell them I was dying, which was the hardest thing I’ve ever done.  My mother fell apart emotionally.

As I prepared to go home to South Carolina, I got a phone call from the same resident on Christmas Eve 1993, who told me a sample of the tumor had been sent to Johns Hopkins for a second opinion, and the tumor was not a sarcoma.   It was something called a desmoid tumor, something neither of us had heard of before. The resident told me it was an odd and very rare tumor that may or may not be a cancer.  At the time, the doctors at Emory decided to call it benign, but to treat it aggressively since it seemed to be growing fast and was locally destructive.  They said surgery would be too risky because of the location of the tumor, so it was decided that radiation was the treatment of choice. Given my young age and relatively good health, they said, I was likely to tolerate radiation well, it carried the least risk of nerve, blood vessel, or spinal chord damage, and what limited literature was available at the time seemed to show some success using radiation therapy with desmoids. I had a full course of 7 weeks of radiation, 5 days per week.

The hospital management where I worked was very supportive and gave me all the time off I needed to get treatment.  After the radiation was over, it took several months for my skin color to return to normal. The irradiated field was very large, extended from my jawline to my chest. While I was having radiation, I had difficulty eating because of pain and lost about 30 pounds.  I had significant muscle atrophy (which exists to this day). I continued to work after the treatment was over, but one day I was sitting in the nurses’ station, and everything suddenly hit me all at once.  I had a panic attack that came out of nowhere.  I ended up quitting my job and moving back home to live with my mother.  But, the radiation did shrink the tumor.  I had one follow-up MRI and was told the tumor was gone, and there was no need for further follow-up.  During the next 12 years, I had physical therapy and took Neurontin to stop the neuropathic pain in my arm.  Looking back, if I had it to do over again, I would have demanded at least a CT or MRI every year or so just to make sure the tumor hadn’t come back, even without symptoms.
During those 12 years, I worked for a new hospital, finished a master’s degree in clinical psychology, got licensed as a professional counselor, and met my wonderful life partner.  We decided to move out west to San Francisco in 2001, and in 2002, I decided to make a career change and pursue a JD/MBA degree.  I was almost done with the MBA in 2005 when I noticed a new lump in my brachial plexus, the same spot as before. I put off going to the doctor and tried to convince myself it was just a pulled muscle from lifting weights.   However, my partner Doug and my friend Lori (who are both physicians) forced me to go for a CT scan, and this time it was larger than before and growing not only around and out of my neck but down into my chest. A “core biopsy” was ordered to make a definite diagnosis, and sure enough, the results confirmed it was a recurrence of desmoid tumor.

This time, it really threw me for a loop.  Here I was, almost done with school, and now I was having to deal with this all over again.  Since I had already had a full dose of radiation in the past, the decision was made to try surgery, with the caveat that it would be challenging to resect a tumor that had been previously irradiated. However, the head and neck surgeon at Kaiser did the best he could debulking the tumor, but could not get all the tumor cells in my chest. He said he did not want to risk debilitating me at such a young age by cracking open my chest, so instead we would simply keep a close watch on it with CT scans every 3 months.
I made a remarkably fast recovery. I was back in law school literally 3 weeks to the day of being discharged from the ICU, and back in the gym shortly after. The very neck incision healed very nicely and was barely even noticeable, given it’s size (about 7 inches long). I convinced myself that this whole episode would just be a little “bump in the road” for me and I could just go on with my life as if nothing happened. About 4 months later, I started having a lot of pain again.   It felt as if a vice grip was inside my neck and chest squeezing so hard I could feel it all the way into my eyes and down my shoulder and back. It was horrible, and when I went back to the surgeon, he felt I was probably growing some scar tissue and sent me to see a physical therapist. At the same time he ordered another CT scan. I was seeing the physical therapist a few days later when she pulled up the report and told me it said I had a tumor recurrence. Even worse, the tumor had grown back all around the incision site, but also it had gotten bigger and more aggravated inside my neck and chest, and was now sitting on my spine. 

It was a kick in the stomach, and I was devastated.   I broke down and cried for the first time in years. I felt like my dreams had been crushed. The hardest part was hurting people I loved, even though it was not my choice. That realization was a turning point that empowered me to go to war with this disease.

After reading new studies, I asked for and got a referral to an oncologist at Kaiser, who wanted to get a second opinion from a renowned radiation at UCSF.  He told me they had developed some very specialized types of radiation therapy that better targeted the tumor, and they would likely work to shrink the tumor, but he was concerned about some risk of damaging areas by treating them with radiation a second time. He told me the tumor was literally about an inch away from my spinal chord.  His main concerns were nerve damage, stroke, or paralysis form the neck down, which could potentially all occur even years from the time I had the treatment. So, we made a decision to go back to the oncologist to try chemotherapy, the least risky option in my particular case.

Initially, I was on inpatient chemo, a 96-hour continuous drip of doxorubicin and dacarbazine.  The plan was to try this for six months, but the oncologist halted it after three months because the tumor wasn’t responding.  After a few months to let my body recover, I was put on Adriamycin and Sulindac, which caused me to have a severe allergic reaction.  I broke out in hives all over my body, I was wheezing, and I couldn’t walk more than a few steps without feeling as if I would faint.  My oncologist stopped the treatment and allowed me to rest again for about a month.  By this time, new research had come out about success with desmoid tumors using a drug called Gleevec.  The oncologist told me Gleevec only had about a 15% chance of working, but we decided to try it anyway.  After one year on Gleevec, the tumor showed no response, so I made the decision to go against medical advice and stop treatment.   I had a 6-month follow-up MRI this past February, and the tumor was stable.  I’m due for another scan in August.

I guess the upside to this whole experience is that I’ve refused to allow this disease to define who I am.  I started and ran my own business, I finished my MBA, and I’m still finishing my law degree.  It’s taken a lot longer than I anticipated, but I haven’t given up.  I’m stubborn, I never give up.  I feel like I can handle anything life throws at me now.  I’m fearless now and I take nothing for granted.

I am a survivor.