Leandra Smith – Metastatic Synovial Sarcoma
Getting It Out
I sat down and finally wrote it all out. I hadn’t done that yet and it felt really nice to have it “on paper” and gone from my head. During my whole “ordeal” I couldn’t seem to write or read for that matter. I couldn’t concentrate. Well thought you might like to hear the whole story from beginning to end. I cried like a baby the whole way through typing it. It was like putting it down made it feel more real…… but at the same time it felt like a story about someone else. I cried so hard because I can’t believe all that happened to me…… You get so caught up with your daily battle that you don’t seem to realize all you’ve been through until you really think about it and write it down.
I am a dancer and choreographer in San Diego and had been having hip pain for approximately two years. My assumption was that there was something wrong with my dance technique and that I was continually injuring myself from my profession. I spent countless hours in physical therapy and chiropractic offices to no avail. In June, 1996 I discovered a lump in my right vaginal wall, a lump so large that it almost completely closed off my vaginal canal. Something was obviously wrong.
I went to see my general physician and with a timid “could you feel this weird lump?” the cancer nightmare began. Immediately I was sent to an ultrasound. Then to a gynecologist, then to an orthopedic surgeon……… no one had a clue what it was. So we signed up for a biopsy to determine the nature of this tumor. The biopsy was a horrible experience. The tumor had engulfed every major nerve to my leg and getting a sample of the tumor would trigger a response in each and every nerve. Five passes later they had moved beyond the scar tissue and gotten a sample of the little bugger.
My roommate, Evan, decided for himself that I had been impregnated by an alien entity and they had somehow missed the womb. I felt compelled to give my alien baby a name, and Wilbur was born. But the myth of the alien child was shattered as the results of the biopsy returned……….. synovial sarcoma……… high grade.
I was shocked. Naturally. But from the very beginning I somehow knew this was something that was going to highjack my life, but that was not going to take it. I settled down to business with the surgeon who brought me the news. “So what do we have to do?” I asked, bracing myself. I knew this was not going to be easy. He informed me that the tumor’s position, arising from the obturator internus muscle on the pelvic floor and its apparent involvement in the vaginal wall, was making its resection (surgical removal) extremely difficult.
“Well…….”, he said slowly, “we may have to take your leg.” “WHAT?” I screamed inside my head and said, hesitantly. The tumor had grown around the main blood supply and main nerve pathways to my leg, meaning that if they removed the tumor they would have to take a portion of those main lines…….. leaving no blood or feeling to my leg. SO, that meant losing the whole leg even though it was not affected by the disease.
I felt kind of swooney and decided there had to be another way. I left that day with my mother, both of us dazed. I was scheduled to start radiation treatments in an effort to reduce the size of the tumor. We were hoping that the radiation would reduce the tumor to a size in which surgery did not have to be as severe.
Both parents flew out from Atlanta and we moved out of the diagnostic phase into the treatment phase. My father bought me a computer with all the works: modem, color printer, huge monitor with dual speakers, CD-ROM. This was the gift that would later save my life. We worked tirelessly to research my disease via the internet. I found an invaluable support group called cancer-l who became my life force over the next 8 months. My screen name was, of course, Wilbur Mom. Information, support and power came across that computer screen 7 days a week and 24 hours a day…… when I needed it and when I felt good enough to search it out. [For info on subscribing to the Cancer-L mailing list, see CancerGuide’s Online Information Sources page -ED]
Radiation was tremendously tiring. They irradiated nearly my entire pelvic region for 7 weeks. In the process I received third degree burns to my genitals. I spent the entire summer of my 24th year flat on my back in the living room, naked because I could not bear the pain of clothing covering my burns, and watching the Republican National Convention on TV (it was held in San Diego and there was nothing else on any channel– as a young Democrat this was pure hell).
I completed the radiation series. Surgery was scheduled for September 23, a Monday. I was prepared for this surgery even though I was told they were going to remove possibly my right leg, my right hip, my vagina, my uterus, my ovaries, and my right rectal wall. I was determined to save my life and this surgery was to be a curative surgery, a life saving operation, even though it was in fact going to take away my livelihood as a dancer and my ability to give life as a mother. I grappled with the meaning of a life that could not perform my life force, dance, and could not contribute as a birth mother…… I did not know what that was, but I was determined to go through with the operation and find out.
Thursday before the Monday surgery I was instructed to go to the hospital for my pre-op procedures. Through my research on the Internet, I knew that if my disease was to spread it would spread to my lungs first. Before embarking on a major surgical adventure, I wanted to be sure that this surgery was going to be what they told me it was going to be, a curative one. So, I requested a lung x-ray. My surgeon said nonchalantly, “you just had one a month ago, but ok, let’s go ahead and do another one….”
Thank God I did. The lung x-ray showed something in the lungs and I was scheduled for a CT of the chest the following morning……. Friday before the Monday surgery. My mother and her mother were in town for the surgery and so they were both present in my greatest time of need. I woke up that Friday morning to my mother panicing…….. she had accidentally swallowed her dog’s epilepsy pill and didn’t know what to do. So, first thing that morning I was on the phone to poison control. She had taken 100mg of phenobarbitol……..the poison control hotline lady informed me that they give between 30 to 100mg of the drug to patients for sedation. Mom was out of commission. So her mom came with me for the test and waited with me to get my results.
We waited for what seemed a lifetime. The surgeon finally came in and told me my cancer had spread to my lungs and there were too many tumors to count. He told me that there was nothing he could do for me and that I should look into chemotherapy options, but he had no idea if it would work for me. I quietly asked, “What if the chemo doesn’t work?” He responded, “three to six months…….”
I quickly glanced over at my grandmother, horrified that she had to sit there and hear this news being told to her 24 year old granddaughter. I thought about her high blood pressure. I thought she might be in danger of having a stroke. I held my breath and tried to be strong. My thoughts raced. I started looking around at my stuff trying to figure out who I was going to give what. I got home and my mother couldn’t look at me. They had called her before I got home and told her. We all just clung to each other and fell on the couch in one big pile and cried.
About thirty minutes later the surgeon’s office called and told me they had scheduled an appointment with Dr. Stanton, a chemotherapist. It was scheduled for later on that afternoon. No one talked, we just waited. We arrived at his office and were ushered inside. He talked so slow…….. I wanted to choke out the bottom line…… I couldn’t wait to hear my fate. The news was promising. He had found a study that outlined the use of a drug called High Dose Ifosfamide with synovial sarcoma patients. There were only 13 patients involved, that’s it. All we had was information from 13 people. BUT, 4 of them had a complete recovery, with no recurrence of disease in two years. Eight had at least a 50% reduction in their disease. Any way you sliced it, those were good odds at least the best I’d heard all day.
I processed the information. I glanced at Dr. Stanton and asked him what the odds were of getting through this whole thing with all my parts. All he said was, “Leandra, I never underestimate the power of young people, especially young WOMEN like yourself…….”. I knew from that moment on that here was a doctor that I could work with and that I was going to be ok. That one line gave me the power to heal myself. Unlike any doctor I’ve ever known, he gave me the power to heal myself; I wasn’t in a place waiting for him to heal me…… that’s the difference between a doctor and a great doctor. We were a team.
I started chemotherapy about two weeks later. It was the worst thing I’ve ever been through. It was horrible, but bearable. As the doctors like to say…….. I tolerated it. I had two cycles of six day infusions in the hospital, the second was the worst. I had delusions and heard voices. I was so ill. I refused to ever go back to the hospital. I tore myself up because by then I knew the drug was working (which is so much more than most cancer patients get) and I still had a hard time agreeing to treatment. Dr. Stanton worked with me, we compromised. I moved the whole operation home and did home care for three day cycles. I did two more. That’s all I needed.
Now I sit here typing as the rollercoaster is coming back to the dock. There is no evidence of tumor mass in my entire body. I show no symptoms of cancer. My hair is fuzzy as it regrows. My last chest CT was recorded as “normal” with no recurrence of disease. I wait for the telltale biopsy to see if we can find the existence of any cancer cells in the tumor bed. If not, I will be in remission. As early as one month from today, this hijacked life will be free.
Seven weeks of radiation, four cycles of chemotherapy, rivers of tears, lost friends, molting hair, major weight gain, and countless hours of worry have changed me. Not all for the worse either. Cyberspace full of friends, a renewed faith, a joy for life, a prioritized list of things to do, a respect for nature, a new, wonderful relationship with my family, a sense of power from survival, confidence to really live………. I always look for the silver lining……… and sometimes it takes a really long time to find it, but it’s always there. You can bank on it.
EDITORS NOTE: Leandra Smith died in the Fall of 1998 – she was a beautiful soul who will be missed
This CancerGuide Page By Leandra Smith. © Leandra Smith
Last Updated: May 26, 1997