LaVon's Story
LaVon was 38 when she was diagnosed with liposarcoma at the abdomen in 1983. Her treatments have included five surgeries and radiation therapy.
I was a very energetic person working as a manager with Southwestern Bell. I begin to tire very easily and had feelings of wanting to pass out; my skin became very dry and cracked. I went to a dermatologist who diagnosed the condition as Ichthyosis. I was sent to an internist for further test.
Diagnosis and Treatment
CT scans revealed a large mass which was surgically removed, and no further treatment was given. I was followed with CT Scans and had another surgery for recurrence in 1985. The liposarcoma returned in 1989, and I had surgery to remove my left kidney, spleen and tip of the pancreas, followed by 30 radiation treatments. I had no side effects and was able to work during the treatments.
When I was overwhelmed with fear of losing my life and leaving my family, I would stand in the shower and have a good cry. I called on my faith and strength to remind myself that I had survived this cancer before and I would do it again.
The tumor returned a fourth time in 1990 and surgery was performed. The surgeon felt like surgery was affecting my overall health, and I had no further scans. The surgeon did not put a timeline on my not being scanned, and he soon retired. I had yearly physical exams with my doctor, and neither my doctor nor I talked about follow-up scans. I remained what I thought was symptom free and had a good life for 20 years, and I plan to have many more!
My husband and family were very supportive through all of these experiences. In the beginning, my two grandchildren were very young, and I prayed to stay healthy long enough to see them grown. I did and I was blessed to see five great grandbabies.
In 2012, I started losing weight, had pain in my left side, and became physically unable to eat enough to sustain my weight. Surgery was again performed, and the surgeon was unable to remove all of the mass. Because of the previous radiation treatments, I will only be given five radiation treatments to the larger mass. I will be followed with CT scans.
Life Now
My recovery from the first four surgeries was speedy and uneventful, but the most recent surgery in July 2012 left me quite weak and mentally scared. I am still dealing with pain and coping with the inability to eat enough to gain weight.
I have learned to appreciate each day. I will deal with liposarcoma all my life, but I will live my life living not dying. I keep busy and am determined that I will not let this disease control my life.
Thoughts and Hints for New Patients
I have lived with liposarcoma in one form or another for 30 years. I would tell anyone that liposarcoma is not a death sentence. Always keep a positive attitude, and keep living not dying, and hope for a cure in your lifetime.
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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.