Today, we begin a new feature - interviews with sarcoma patients, caretakers, family, and friends.
After talking the amazing Liselle Reppert into being our first interview, I closed my email with, "Let me know what you're thinking."
The first line of her two-part (!!) email back to me was, "What am I thinking? 'Oh Boy' and on so many levels."
Let's dive right in...
What is your sarcoma diagnosis?
Undifferentiated Pleomorphic Leiomyosarcoma. There are characteristics of rhabdamyosarcoma that had them scratching their heads and may complicate my treatment later but for now we are going with leiomyo.
In what year were you first diagnosed?
My diagnosis started in May of 2013, but I found "Fred" in February of 2012. Yes. I sat on him for over a year and would most likely still be sitting on him if my friend Ashley hadn't taken control.
Have you had surgery, chemotherapy, radiation treatments, something else?
So far I have had two surgeries. One to remove "Fred," a 27cm incision to take out a 16x16x10cm section with clear margins. And another surgery to shoot blue dye into the lymph vessels when i stopped healing because edema kept re-opening my leg. (Interesting stuff...made me pee like a Smurf.)
And I found the Sarcoma Alliance while I was recovering with my wound-vac, which kept me in the hospital for 18 days.
I have only done one round of doxorubicin.
Had you heard of sarcoma before you were diagnosed?
It was in college that I first heard of sarcoma and promptly forgot about it. Though I now recall every word of the brief lecture in my human anatomy classes.
|"A lot can happen in 10 years |
and I would like a chance to see it."
What is your prognosis?
Since my last surgery I have had 3 CAT and 2 MRI scans. The plan was hunt, peck, and zap. Unfortunately, one lung met is inoperable and sitting in a nest that one-quarter of my blood volume passes through with every heartbeat. Now, we are looking to control its growth.
As I told my doctors, "A lot can happen in 10 years and I would like a chance to see it." Regardless, whether surgery advances or a cure is found, I want to help those who come after me.
As things stand...I'm terminal.
That is NOT to say that sarcoma is going to kill me because it is NOT. From the moment we are born...we begin to die. That is what defines life. It is the definitive that separates life from existence.
I am living.
How old are you?
|"My inability to work dragged my family all |
the way to the gutter. We live in a motel."
Where do you live?
Technically...I am homeless. My inability to work dragged my family all the way to the gutter.
We live in a motel. We could have moved out but God gave us the most incredible dog that can tell when i am going to fall. There are no apartments here that will accept a 95 pound dog without a service license and I have no way of getting him certified. We would rather live in a motel than risk losing my dog and the peace of mind he brings my family.
Tell us a little about you. Are you married, kids, pets? What do (or did) you do for a living?
I grew up in Long Beach, California; I live in Mount Vernon, Washington, with my husband, two grown sons, and my dog.
What is your biggest piece of advice for someone who is newly diagnosed with sarcoma?
My best piece of advice is be organized. NOTHING can prepare you for the chaos of hearing those three words from our nightmares. Getting organized gets your head back in the game.
Everyone has a diagnosis story. What is yours?
I'd lost some weight and the leftover skin flap shrank on one leg but not the other so I watched it. One day, I found a golf ball-sized sphere in the fat flap.
"Oh great, a big cyst," I hoped. That was in February of 2012. I checked it periodically and by September there was no doubt I had a tumor that more than likely wasn't benign. Unfortunately, I had no insurance and having been disabled for the last eleven years and having landed in the gap between worker's compensation, social security, disability, and welfare, I had no hope of getting help.
I went to the emergency room expecting to have to file bankruptcy as soon as they told me what was going to kill me and kicked me to the curb, but that's not what happened.
Skagit Valley Hospital kept me and sent my labwork to California when the local lab couldn't give a clear diagnosis. They also got me the best oncology team they had and stayed on top of on welfare until they agreed to pay my ongoing bills.
Tell us why you name your tumors?
That is comedy relief. At first, my husband couldn’t even tolerate the word “tumor,” forget about lieomyosarcoma. Big scary “cancer” just ticked him and oldest son right off. My youngest understood that I think out loud when I’m getting a handle on a situation.
I thought of naming it “Henry” and the mets would have been “Winkler” and “Ford.”
My mother-in-love named the mets saying they were in my chest so they had to be girls. My Sarcoma Alliance friends named a lymphnode that turned traitor and my named the latest met.
I have some more that need names. Any ideas?
How are you feeling today?
Actually, I feel surprisingly good, not at all what I expected.
|"The only side effect so far is my |
hair loss and that is no biggy."
What side effects of treatment are you experiencing?
Because of a pre-existing penchant for hyperemesis, we hit the antiemetics really hard.
The only side effect so far is my hair loss and that is no biggy.
What keeps you inspired / motivated?
How can I be so optimistic??? How can I not. From the get go, God has had His hand on this whole fiasco.
Since you brought it up, how has your relationship with God been challenged throughout all of this?
My relationship with God is a little more blatant. He had always been obvious in my life, but I sometimes seemed to be sleeping on the job – letting Him appear to be taking a back burner in my active life.
When you were a kid, what did you want to be when you grew up?
As a child, I wanted to be a banker and after graduating from high school, I went into banking. Unfortunately, money weighs a ton and I injured my back forcing me to change careers. Several minor injuries later, two discs herniated leaving me partially paralyzed with chronic pain and facing full paralyzation.
Sometimes God realizes you are stubborn and he pulls a pin to put on your brakes for you.
At one point, I studied to be a stenographer. I developed tendonitis. Rains...pours...I never understood what the lesson was. Still don't get it. :-P
I just know He has a point. Somewhere.
One thing to keep in mind with this and all of our interviews - these are the words and experiences of the person being interviewed. The attorneys would like me to remind you that the viewpoints expressed here do not necessarily represent those of Sarcoma Alliance and should not be taken as medical advice.