Centereach, New York
August 1, 2007 was the date of my surgical resection of a tumor that had grown behind my right knee. I was diagnosed with synovial sarcoma five months before, just a few days after my 27th birthday. I will never forget the tears that fell from my face and onto the downy hair of my 10 month old son, who sat on my lap as I absorbed the news. Chemotherapy treatment followed shortly after, with the hope that it would shrink my 8 cm tumor – a tumor that had managed to wrap itself around a major leg nerve.
As I sat on my gurney waiting to be wheeled into the operating room, I thought about the “what ifs”. What if they can’t remove the tumor in its entirety? What if they can’t spare function to my leg? I was well aware of these possibilities. My surgeon had explained them all to me just one week prior to my operation. His first priority was to save my life; his second was sparing my limb. He discussed amputation, prosthetics and physical rehabilitation. All I wanted to hear was that he would do everything he could to save my leg, and I told him so. He said that he would give it his all.
Awakening from the fog of anesthesia, I looked at my right leg. It was wrapped in layers of gauze. Move your toes, I told myself. My toes moved and wiggled. It was my own, be it impaired, version of a victory dance. With my beeping morphine pump cheering me on, I slowly flexed my foot. This time the tears that fell from my face were those of utter joy. I knew that my surgeon had kept his word. I had my life and my leg!
Please support International Sarcoma Awareness Week: July 18-26, 2009.
I went in to the Cleveland Clinic for surgery on my arm to remove a “lipoma”. The surgeon called to tell me it was Synovial Sarcoma. With two months until finishing graduate school, my whole life seemed completely up in the air. I was angry and frustrated but also realistic in knowing that I needed to take care of myself.
Thanks to my annoyance with this little bump on my arm, I was able to get in to the doctor and have it removed quickly. I was very lucky there had been no spreading.
I decided to come home and came across a doctor at the University of Chicago who is the Director of the Sarcoma Program and an Oncologist. He, a radiation oncologist, and a musculoskeletal surgeon decided to treat me with chemotherapy, radiation, and additional surgeries.
I managed to make it out to graduate. It wasn’t exactly the day I had pictured, but I am so glad I was able to go and finish.
I got home and checked in to the hospital the next day for round 3 of chemo. After I got out, I was right back at school trying to finish my student teaching hours. After my arm had healed, I finished 3 additional rounds of chemo and was able to find a job, move, and actually start up my life. On New Year’s Eve I had my first 3 month check up since finishing chemo. My CT scans were “clean and perfect.” It was such a relief! Now every 3 months I will be back at the hospital to have a CT scan and make sure it stays that way. It is a bit scary to know it could come back, but I have to feel optimistic that it won’t.
During a Rugby match in college I incurred a left knee injury that ultimately led to knee reconstruction surgery. Three months later I began to experience a new symptom down my right leg. An MRI yielded a diagnosis of Ewing’s Sarcoma in September 2005. A tumor the size of a grapefruit was located in my right illio-sacral joint.
The night I was admitted to Wesley Hospital I met two young girls who had also been diagnosed with sarcomas: synovial and Ewing’s. So much believing it to be rare. One of the girls, Hannah, later became my wife. My chemo- and radio-therapy treatments took nine months during which our relationship continued to grow. Hannah had relapsed with synovial sarcoma and had to undertake even stronger treatments.
In the following, mixed emotional two years I dare say we experienced more joy than most could possibly expect in a lifetime. After finishing my treatment, Hannah and I moved into a little cottage whilst she continued hers. We tried all different medical options, both natural and drug based. In only three months Hannah organized our wedding which was to take place October 14, 2007. It did not go to plan. Instead we married on October 1 2007 in Wesley Hospital. Hannah passed in the early morning hours of October 2, 2007.
I continue to be in remission whilst pursuing our passion, a foundation in memory of Hannah, Hannah’s Chance Foundation. Our dog’s name is Chance. My story has been an experience from both sides of the fence and I know I have grown into a better person because of it. Despite only being 21 years old, I feel 40 … no offence of course.
When I was posted abroad, my friend Hans Lipke had to go in for surgery for synovial sarcoma mets in his lungs and thyroid. I sent him this poem. Hans passed away on April 28, 2008 at the age of 28.
Operating Room One
by Mimi Asnes
when they open you up
and find inside
and five luminescent luna moths
slowly dry their wings and launch
into the sterile fluorescent-lit air
will someone think to write a gospel
about the young man
from whose lungs
were spawned a league
of blue-green angels
who were guarding him not
from left and right
fore, aft and above
but from within?
The first doctor I went to said that he would amputate my leg, because synovial sarcoma is highly malignant. He did not want to take the chance that it could spread to the lungs. He said that if he did remove only the tumor, which was 5 cm thick and 10 cm long, my knee would be so butchered that I would not be able to use it anyway.
My family and I went for a second opinion. The second doctor said he thought he could remove the tumor and save my leg. He said he might have to remove a nerve which is responsible for lifting my foot, along with the tumor. We decided to have the surgery. I was really scared. I did not know what my knee would look like afterwards and if I would be able to walk normally again.
I was being wheeled on the bed to the operating room. All the operating rooms had names, like Integrity and Hope. The one I was going into was called Faith. It touched me immediately. It felt like a sign from God that I should keep faith, that He was there for me. I was no longer scared. After the surgery, the doctor checked whether I could lift my foot. I could!
He had managed to save the nerve. It has been one year and I am still clear. My knee is almost as good as the other one. The only evidence of the surgery is a 30 cm scar running down the side of my leg. My family was there with me through it all. What would I do without them? Keep the faith, God will not desert you.
Moments in Sarcoma in Afrikaans: Oomblikke in Sarkoom
Die eerste dokter wat ek gaan sien het, het gesê dat hy eerder my been sou afsit, omdat sinoviale sarkome hoogs kwaadaardig is. Hy wou nie die kans waag dat dit kan versprei na die longe toe nie. Hy het gesê dat as hy net die gewas verwyder, wat 5 cm dik en 10 cm lank was, my knie so beskadig so wees, dat ek dit in elk geval nie sou kon gebruik nie.
Ek en my familie het vir ‘n tweede opinie gegaan. Die tweede dokter was van die opinie dat hy dit sou kon verwyder en die been behou. Hy het gesê dat hy dalk ‘n senuwee, wat verantwoordelik daarvoor is om my voet te lig, saam met die gewas sal moet verwyder. Ons het besluit om die operasie te laat doen. Ek was baie bang, ek het nie geweet hoe my knie sou lyk daarna nie en of ek weer normaal sou kon loop nie.
Hulle was besig om my op die bed na die operasiesaal te stoot. Al die operasiesale het name soos Integriteit en Hoop. Die een waarheen ek oppad was, was Geloof. Dit het my dadelik aangeraak. Dit het vir my gevoel soos ‘n teken van God dat ek geloof moet behou, dat Hy daar sou wees vir my. Ek was nie meer bang nie. Na die operasie, het die dokter gekyk of ek my voet kon lig. Ek kon! Hy kon die senuwee red. Dis nou al een jaar en ek is nog skoon. My knie is amper so normaal as die ander een. ‘n 30 cm litteken aan die kant van my been is die enigste bewys dat ek ‘n operasie ondergaan het. My familie was daar saam met my deur dit alles. Wat sou ek doen sonder hulle? Behou geloof, God sal jou nie verlaat nie.