“One Day at a Time”

So I’ve been battling Myxoid Liposarcoma now since July, 2008. I probably had this condition a year prior but just never knew it. Life was good and everything was easy. Then came the rather shocking diagnosis and even scarier “treatment” plan. At the time I wondered, “Why did this happen to me? Am I going to survive this ordeal?”

I’ve since endured 6 five-day cycles of intensive chemotherapy (over 4 months), numerous emergency trips to the hospital, 25 rounds of radiation (over 5 weeks), and surgery is only days away. I’ll be honest: the chemo sucked . . . and the smelly hospital food was even worse! My strong recommendation is to order takeout from your favorite restaurants instead. Whatever sounds appealing is what you should eat.

In contrast, the radiation treatment was a cakewalk. Sure, I now have funny tan lines on my left thigh and a little “sunburn”, but who cares! Life is good again, my appetite is back, and I’m even working full-time (which I find quite therapeutic). It turns out that I work with some pretty darn funny guys . . . and it does feel good to laugh again.

If my sarcoma journey has taught me anything, I’ve learned to cherish the good times, enjoy my family and friends, have a few laughs, and even appreciate a fine meal. I refuse to dwell on the negative or live in fear. Yes, I concede that I am not in control of my destiny, but I am steadfast in my resolve to enjoy life and be thankful for all of the “easy times” that come my way (like now). I no longer grapple with questions that cannot be answered, but instead take things one day at a time.

I love my mom. I am glad she is safe. I was sad and missed her when she was sick. I hope she doesn’t get anymore balls in her belly. - Sam, age 7

When my mom was sick with sarcoma, I was ssssscared and missed her. Every day in school when mom was sick my teacher would take me out in the hall and tell me how mom was doing because I wondered and my dad was at the hospital and dad would call. I pray it never will happen again. - Kamren, age 9

Kamren’s and Sam’s mom is a liposarcoma survivor.

It was 10 years ago and I was 35 years old. I was recovering from liposarcoma surgery (a radical muscle excision) and as I lie in bed, I heard a sound that I had heard many times before but this time it sounded so different. You see, for years I had been waking up to the sounds of the birds next to my bedroom window and irritated each and every morning that they had awakened me with so much noise. There were always two really loud birds singing to each other. This time, when I awoke, I actually was able to stop and listen to the song that they had been singing to each other so many mornings before. This time, I stopped and I really listened. I realized how blessed I was to be alive and to be able to hear them that morning. My life had been so hurried before I was touched with cancer. I was busy with my job, my teenage daughter and my husband. Now I truly understand what it means when someone tells you to stop and smell the roses along the way. From that morning on, I awake to the beautiful sounds of the two birds singing their songs to each other and realize how blessed I am to be alive. I am so thankful for those two birds every morning. I still continue to listen to the birds sing each and every day of my life.

I lost my sister this past summer to liposarcoma. If there is something that I want to share with everyone, it is my dismay when I learned that I was not to touch her after a certain round of medication that she had, due to her immune system being down. Afterwards, she told me that she was having trouble with many well wishers wanting to hug her when they visited, etc. I told her she needed to put a sign up at the door – DO NOT TOUCH! I have learned since this that many people are aware of lowered immune systems and that people need to be careful, but I still want to put it out there that when you are dealing with someone with sarcoma, there may be times when you need to ask first, before kissing and hugging.

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.

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.

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.

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!

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.

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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