Kirk Souder

On my twenty-first birthday, my eyes closed as the general anesthesia for my second thoracotomy to remove a pulmonary metastases, put me into unconsciousness. At some point during the next two hours, a golf-ball size tumor was removed with a section of my lower left lobe, and that was the last time there was any sign of cancer in my body.

Throughout my teenage years, I was plagued with excruciating pain whenever a spot on my inner left thigh, just above my knee, was so much as even tapped. Every year or so, my parents would bring me to orthopedic specialists who would give me a diagnosis like tendonitis, bursitis, etc., assuming these ailments were brought on by sports and the like. The remedy was always extremely painful cortisone shots right into the area. When I was sixteen a calcium deposit showed up, and the doctors went in and removed a small, three centimeter growth. During a check-up two-weeks later they pulled my parents into another room and communicated to them the pathology report indicating the tumor type was synovial sarcoma.

About a year and a half later, during my first semester in college, I noticed what I thought was my atrophied muscle from the surgery returning, but when it got to the point where it was displacing my knee cap, I decided it must be something else. Very soon I was to awake in a bed with a doctor at the foot of it who proceeded to tell me that they had just removed a synovial sarcoma the size of a large orange from my leg, that chemotherapy or radiation weren’t very effective with this type of disease, that amputation was going to be necessary, and that even then, people with this type of tumor could only expect to live eighteen to twenty-two months.

That night I truly believe I went all five stages of the mortality awareness dynamic–shock, anger, denial, bargaining, and acceptance. I never asked “why me?” so much as “why not me?” It was to be the first of a series of insights brought on by cancer and mortality that would become the most important gifts in my life.

At the time, the company my father worked for had made some research donations to the Memorial Sloan Kettering Cancer Center, and so we were somewhat aware that if there was any hope, it would be there.

The doctors there opted not to amputate as brand new research was indicating that limb salvage surgery might be just as effective in the long-term. I had a radical resection of the area, including about half my quads, and what was then a new form of radiation therapy called brachytherapy where they put catheters through my leg in a grid arrangement and then inserted radioactive chips. I’d have to remain in isolation in a lead room for a few days until they were removed. I also had a chemotherapy regimen called VAC–vincristine, adriamycin, and cytoxan. I can remember being a vain eighteen year old, and blow-drying my hair two weeks later only to see it all fly off my head onto the bathroom floor. The chemo also gave me severe nausea for about 36 hours following the treatment. It got so bad, that I was getting violently sick every twenty minutes. By the third treatment we were desperate and decided to try the latest, underground technology–marijuana. It worked. I still smile as I remember that motley crew of about seven of us, from fifteen years old to sixty seven years old, on the roof of Sloan Kettering engaged in preventative measures right before our chemo treatments. I also had immunotherapy–shots every two weeks that would produce a fever for about twenty four hours.

The chemo treatments went for nine months. About six months after that, a golf ball size lump appeared on the top of my thigh that a needle-biopsy revealed to be a recurrent synovial sarcoma. Another radical surgery followed where all my quads were removed leaving my left thigh not at all matching my right one, along with more internal radiation (this eventually killed my femur and has mandated four total knee replacements since then).

Sometime after that was one of the darkest days. A spot showed up on my lung x-ray. The tumor had metastasized to my left lung. I went in a few days later and had my first thoracotomy. I was in a program at college where half of us were to me cut at the time, and so just six days later I was back doing all-nighters with enough percocets to not notice how much pain I was in.

Six months later, another met appeared in the same area. The oncologists opted to try out an experimental chemo on me called DMDR. Three months later the tumor had grown to golf ball size and they went in again to remove it along with most of lower left lobe.

After a year, the monthly lung x-rays got lengthened to every three months, and then every six months and then every year, and now, almost twenty five years later, every two years.

I opt to not use the term “cure” though. Yes, there is a very outside chance that a recurrence could still occur, but more importantly to me, I choose to not use it because it’s important to me to stay connected to the gifts that cancer has brought me.

Yes, I said, “the gifts.” Because as horrible as this disease is, there are gifts if you are open to them.

The words that doctor uttered at the foot of my bed over twenty years ago gave birth to a new and vital me. With the awareness of death for the first time, comes the awareness of life for the first time. And with both for me came an amazing and profound relationship with my world and my god that I would not trade for anything. The words that doctor uttered gave me a vastly greater spectrum of experience and knowledge of the universe. In that spectrum, all the things that I thought were so critical, and all the things I had previously feared, evaporated with the person I used to be. In the end they are all delusions, and with that knowledge comes the ability to go for anything in life without fear and without sweating the silly little things that don’t matter. When I look down at the scar across my rib cage, and farther down at my very disfigured thigh, I am grateful to them as reminders of these gifts.

I can remember the event of my first lung metastases and having a heart-to-heart with family. I remember telling them that it was important for them to know, that even if the worst happened, I would not have traded these gifts for life without cancer. Mortality is something every single person on the planet has in common, but living life aware of reality, with purpose, with vigor, and without fear, is rare. Better to live two years awake than another forty asleep.

In the years since my diagnosis, I have built an internationally renowned ad agency, fallen in love with an amazing woman, and watched the birth of my son, who continues to rock my world. Recently I returned to grad school in order to be a more effective counselor to people with cancer and others as well. Would I have done something like that without the gifts I’ve talked about? The delusions of security and control would probably prohibited me from doing so, but now the insights of what is real and what is important have made this decision available to me.

I wish I could point to something in my treatment and say, “that’s what did it, that’s why I am still here and kicking”, but I honestly can’t. What I can point to though, is an attitude that I quickly adopted and that I highly advise any sarcoma patient adopt as well. Don’t be patient-passive, be *patient-active*. I’m borrowing this term from Dr. Harold Benjamin, founder of The Wellness Community (which I highly recommend), because it perfectly describes a manner of being that to me should be a mandate to all sarcoma patients. Be active in your fight for recovery. Realize that you are the sole person responsible for your health and well-being. Realize that the doctors and treatments are only tools, and that you are the healer. Be the squeaky wheel that gets the oil. Demand the answers you want, and demand the sarcoma specialists you want. *Visualize*. Visualize your body’s defenses, the chemo, the radiation, killing the cancer cells. Visualize yourself five, ten years from now doing exactly what you want to be doing, and visualize it every day and every hour if you can. And at the same time, wake up in the morning and do what you want to, in the moment. I say this regardless of your prognosis, because in the end, it is this approach that will not only maximize your chances of survival, even more importantly, it will maximize your quality of life, and that, really, is everything. Don’t think of yourself as a cancer victim, think of yourself as a cancer *victor*.

Don’t prepare for the worst to happen, prepare for the best to happen.

Prepare to live.

Because whether you realize it yet or not, you are alive. Very, very much alive.

About Sarcoma Alliance

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support.