Biography
I developed a pain in the front of my left thigh. Being very athletic, I thought perhaps I pulled/tore a muscle. Little did I know that this thought would turn into a 3-1/2 year journey draped with pain and emotional and physical limitations. Over a 2-1/2 year period of medical appointments, MRI’s, Lab Work, Cat Scans, Accupuncture, Nerve Conduction Studies…the pain grew more intense with every passing day. I recall being told by yet another doctor that it was probably Meralgia Paresthetica, a severe pain felt over the anterior or anterolateral aspect of the thigh due to injury or compression of the lateral femoral cutaneous nerve.
None of the tests mentioned above showed any signs of a cancerous tumor
growing among the sea of nerves and smooth muscle.
I couldn’t sleep, I couldn’t walk without the assistance of a cane. I couldn’t partake in a game of baseball with my nephews. I had to give up my passions.
There were rare moments when I forgot about the pain, while watching the kids play ball on a sunny afternoon. If my left leg was absolutely still, the pain was absent, but as soon as I moved, contracting the muscles, the pain returned with a vengeance!
Every move I made at night woke me from a sound sleep. I felt like a prisoner trapped in my own body, as the pain limited my physical world.
As I approached the third year, I thought I was going crazy. I knew, no, I sensed, there was more to this. I could barely walk the pain was so excruciating. I acquired a new nickname given to me by my co-workers, Gimpy.
Luckily, I decided to venture out of Rhode Island in hopes of finding
an answer. Year 3- Lahey Clinic came into the picture. After several appointments with a Neurologist, an Anesthesiologist was scheduled to perform a nerve block. Before the procedure he decided to inject my thigh with a numbing agent so that he could palpate it
without me jumping off the table! After the examine he concluded that
he definitely felt something that warranted another MRI.
The tumor finally presented itself on film. Unfortunately, after the progression of 3 years, the tumor grew to be the size of a tennis ball, which finally was visible on imaging.
The biopsy was scheduled the following week. As I was coming to from the anesthesia, I recall the doctor telling me that it was malignant. I vividly remember what I felt. No, not fright, panic, or fear, I felt the thickest and warmest relief blanket me. I finally had an answer. The dark abyss gave way to light. I no longer had to deal with the “unknown” which, for me, was much more difficult to deal with. I knew I could battle whatever presented itself, as long as I knew what it was.
After an immediate surgery, the final Pathology report came back, which
showed a High Grade Leiomyosarcoma. The tumor was excised with a wide
excision which included the vastus lateralis (the largest part of the
Quadriceps running along the outside of the front of the thigh ) and
the rectus femoris (the head/front Quadricep) and part of the
iliotibial track (the tract can be thought of as an extended tendon of
these two muscles by which it acts as an important brace for the limb,
steadying the pelvis and assisting in knee extension). The Sartorius
muscle (long band of muscle that stretches from the calf to the pelvis)
was split and a large portion of it was laterally removed with the
tumor.
After surgery, I was wheeled up to the 6th floor, which would be my
home for a while. I had lots of time to think while I was recovering. I also had time to pray and be thankful I didn’t lose my entire leg. I couldn’t see just how much they removed from my leg because it was draped in white with 2 drains protruding from underneath. The nights were long. Being bedridden and dependent on others was humbling. My days consisted of doctors visits, bed pans, bed baths, and thoughts
of what the future was going to hold. What would the odds be of beating this disease if I didn’t fly to Bethesda Maryland for the suggested experimental Chemo trials? I knew
the chances of a recurrence would be high regardless of what I decided.
There was not a lot to go by, since I was the second case, in Lahey Clinic’s history, diagnosed with this rare disease.
I couldn’t remember a time when my feet touched the floor without
feeling any pain. Well, the day came when a few of the nurses got me
out of bed and assisted me to the bathroom for the first time in what
appeared to be an eternity. The pain was gone. My leg felt weak but the
pain was gone. I was so grateful to be alive, to be able to take a step
without feeling a knife-like jab with every move I made.
The days that followed, my leg gave out on me, even with the assistance
of a walker. Eventually, I was able to walk on my own, without a cane,
or walker. The drains were removed and the unveiling showed an
indention that began 6” above my knee, and continued up toward my hip.
In the middle of this valley was the incision. It appeared to be in the
shape of a very wide grin, a 12” wide grin.
I was in my 20’s when this battle began in 1991.
I decided to skip chemo and to undergo radiation treatment only since the prognosis was not good. I wanted quality of life vs quantity. Well, it is now 2008 and I am still cancer free. I consider my life a blessing.
I’m not sure why I’m still here. I do know that when I was first diagnosed, I was determined to fight it. I never called it “my” cancer. I imagined it completely gone from my body. I surrounded myself with family and friends. I kept the light of hope close to my heart.
Thanks for your support - 
hi Barb,
I too have leiomyosarcoma,of the uterus.the odds they give me werent good either.the odds they r giving me now arent much better.i think its only God who decides.-your proof of that!
I am new here and only to read and learn anf appreciate my life. I lost my twin to brain cancer. too SHORT years ago in AUG. I too had brain tumors in 1997 and cannot figure out why I am still here but very blessed to be. I had my tumor ( the bad one) leave wiht no surgery or treatment. I denied treatment. except natural.
I did follow a book on positive things but surely prayers and all worked together. BUT it must be we all are appointed to death when it is OUR time. Why was my twin to die and not me? Same DNA. We always had same illness even same teeth capped. Tumor same place too. Something I will wait to find out. I tell her I miss her but that I can wait and do not want to see her too soon and know she gets the humor. She may even be saying if only she could tell me she would say why would you ever wish ME back There when I can be HERE. :)
I am happy for you. It is great to remember how much others are goign through and realize we are never alone.
That is sad it took so long for you to find what all the pain was from. I finally got diagnosed from an urgent care doctor. After many doctors saying tension headaches etc… I pray for som many on here and wish I could do more.