My husband was diagnosed with Myxoid Liposarcoma (Stage 3, Malignant) on July 15th, 2008. The words that are seared in my brain are, “It’s round cell, very aggressive, he’ll need intensive chemotherapy”. It still seems like a bad dream, going to the doctor’s appointments, tests and within 2 weeks, seeing my husband of 21 years, in a hospital gown, being hooked up to 2 types of chemo, and his skin turning shades of red from the Doxorubicin. It’s horrible that the treatment is worse than the disease…there must be a cure…soon.
We have 2 sons and I’ve told my husband, “You can’t leave me; I’m not letting you go that easily. We’ve only been married 21 years, I want at least another 21 with you”…he’s still in his journey. Thank God the chemo is behind us…now the radiation and surgery to follow. Thank God for the wonderful doctors and nurses who really care about their patients and their jobs. They don’t get enough credit! Hopefully our journey will end soon, with him being declared “cancer-free”…that’ll be music to my ears!
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Remembering the day I was told I had cancer and a rare one called liposarcoma is still very clear to me. It’s hard to believe that a lump sticking out of your thigh could send you on a journey full of tears and laughter.
I am going to talk about the laughter we had after I went through the radiation on my left thigh. The scar is from my butt cheek and halfway down my leg.
It was Christmas 2002, and we had a houseful of family from Sydney, 12 hours south. They wanted to go to Steve Erwins Australia Zoo for a great day out on New years Day 2003. “Gee,” I thought, “I better wear some shorts and undies.” My wife suggested a g- string. Okay…that will hold things up. My sister in law suggested I sit in a wheel chair whilst we looked around the zoo. I thought that was a great idea.
My wife pushed me on the longer walks, as it was too hot for rubbing raw thighs, and my legs are thin!
As we were going between the exhibitions there was a rise in the path. With my wife holding onto the chair and pushing me and all the bags, she lost control and I started off down a grassy slope. I jumped off and the chair went down the hill. The girls stood there laughing, glad the crocs were behind the fence.
It was funny at the time. We went back to the zoo a couple of years later, and they had motorised wheelchairs. I really needed them on the last visit!
A bit of laughter in times like these makes it all the more easier to cope.
I was in the hospital to do radiation for Liposarcoma in my left thigh. I had already had surgery to remove the tumor and things were looking good. Before they started the chemo, my doctor decided to send me for a CT scan just to make sure everything was still okay. After the scan the doctor returned to my room and immediately I knew something was wrong.
As it turned out my cancer had showed up in my left lung, three more tumors. For a moment my world stopped and I thought “well this is it”. My wife thought the same, I think, although she never said a negative word. Without her strength I would not have been able to make through that day. Luckily the chemo has worked and it looks like I will be around for quite some time, God willing. We thought that I would have to have lung surgery but as it turned out the tumors have shrunk to such small sizes that the surgeon said he would not put me through surgery to get them, hoping the chemo will completely destroy them. I have one more treatment left before we do more CT scans and I pray every day that it will be the last. Cancer sucks but chemo sucks more!
At the beginning of last year I had been through the terror of being told I had this rare sub-type of a rare cancer. Reading the internet didn’t give me confidence because the rarity means there is little evidence with which to predict survival rates. Survival rates of liposarcoma made I could find made me wish I could have had advanced, aggressive – any other cancer – as long as there was an established treatment protocol.
Then I met Ann W. Ann is one of the few Australians I’ve met online who has sarcoma. As I learned more in the early days about how lucky I really was (a low likelihood that my sub type will come back nasty) the more I appreciated her attitude. She has young children, good family and hope for the future. She also has a sub type of liposarcoma that I don’t envy. She has been through multiple surgeries and very nasty treatments.
My moment, with Ann W, started then but continues now – she exudes support, confidence and optimism about life in spite of the daily challenges of caring for her family and herself. From school lunches to life threatening treatment and the overhanging doubt about the future, she continues to reach out to others to offer encouragement, optimism and hope. I’m lucky. My moment continues, as part of my life, just knowing Ann W and others like her.
Los Angeles, California
While I was receiving post-op radiation treatments for the liposarcoma resected from my thigh, I got to know a woman who was there for breast cancer radiation. For that month we always greeted each other in the morning in the waiting room before heading off for treatment. Months later I ran into her in, of all places, a fitness center. I just thought it was funny that two people who met at one of the grimmest medical places possible would meet again while working out after recovering.
Cancer was not something that I had personally dealt with in the past. In October of 2006, we found out that my father-in-law had cancer. This coming from a man who was just a little sick and never weak a day in his life. The transformation from full health to full-blown cancer was a real wake-up call for us as to the devastating effects of cancer. The problem we had was that no one could figure out what type of cancer he had.
It wasn’t until we conferred with MD Anderson Cancer Center in Houston that we found out he had liposarcoma. It was a momentous realization that we really do not know enough about cancer and awareness must be raised. After a long fight with cancer, consisting of several surgeries, the cancer finally (and at that point, thankfully) took his life. The amount of pain that he had to endure was unfathomable and it woke me up to the real dangers of cancer and just how frail this form is. Though this is a very sad time in our lives, we now realize that more must be done to research a cure for this disease so that fewer and fewer families have to go through the pain of loss. As long as we live we will not forget him and his fight.