Watsonville, California
“A time to be born, a time to die,” Ecclesiastes.
The surgery was successful, but complications took over. My condition deteriorated. My time was at an end.
Cancer was a bad word back then. People didn’t talk about it even to friends and relatives. Only my mother came to visit. Dad worked two shifts. But when the time came, he left his job to see me. It was a time when visiting was limited to adults only for two hours daily. Without regard to the visiting rules, Mom brought my little brother and sister to say goodbye, although she did not tell them how serious I was.
My sister immediately looked after my comfort, holding my hand, rubbing my arms, washing my face, caressing my forehead and massaging lotion onto my back. No one had touched me for so long. Who wants to touch a dying person? As I lay inert to her ministrations, her love, warmth and energy brought me to a state of aliveness I had not felt in five months.
My brother brought a portable radio with him. I hadn’t heard a radio or TV since I’d been there. Hospitals were like prisons back then. I was alone in four walls unable to move and I was beyond caring about anything. I had no energy to speak since it was so close to my time to go. As my mother left with the kids, my brother ran back into my room and left his radio on the bedside. WKBW was introducing new songs over and over again. At first I was annoyed. I couldn’t reach it to turn it off. But soon, I found myself listening, then humming, then actually singing! My sister’s touch, “Quinn the Eskimo” and “Green Tambourine” brought me back from the edge of death. “There’s a time to heal!”
Pekin, Illinois
My journey is with chondrosarcoma. I am a 38-year-old mother of two young beautiful daughters. Wife. Successful business woman. Recovering alcoholic of 8 years. Good friend. Christian. Skipping down the yellow brick road to the tune of “How great Thou art.”
Out of nowhere, small spot, lump, tumor, mass! My life became a three-legged wobbly stool.
Tests, biopsy, wait, wait, surgery, radiation, wait, wait. My friends became worry, fear, frustration, loneliness, anxiety, depression.
Finally the words I was waiting for…remission! The journey is over … NOT!
My life was different. I didn’t fit back into the old mold. Chondrosarcoma changed me physically, mentally, emotionally and spiritually. The only fix was the physical and I wasn’t the same there either.
I didn’t know how to live. That journey is the tough one. How do I live with this black cloud? I need thoughts other than cancer-related. Where is the eraser?
Today, after another occurrence of chondrosarcoma, I am on the journey of living in remission. I am healing the other parts of this disease. Mental, emotion and spiritual. Learning to accept today actually as it is. Believe in the goodness of life. One foot in front of the other. Looking back but not staring.
On the yellow brick road again, skipping with a limp to the tune of “How great Thou Art!”
Attleboro, Massachusetts
My daughter operated a busy daycare in her home. When the call came we were dancing in the kitchen; all of the kids were doing the Hokey Pokey My granddaughter had an emergency operation 10 days prior to remove a tumor that was pressing on her sciatic nerve. We were told that these tumors were 99% benign so we weren’t overly worried.. My daughter took the call out on the deck so she could hear. I remember a sound, still hard to describe, and watched my daughter sink to her knees and I thought, this is it, then, this must be cancer. The diagnosis was mesenchymal chondrosarcoma. I was right, and nothing was ever right again.
Denver, Colorado
As a performer and writer, I’d always wanted to write a one-woman show. It wasn’t until I was in the grips of deciding between seven options for a difficult surgery, which held my leg in the balance, that I found the drive or courage to write it. For two months I searched through the instances of fear and despair over my diagnosis to “find the funny.” I wasn’t ignoring reality; but I had to keep laughing.
Learning about the titanium, the screws, the cryosurgery – all the elements that could be going in or out of my bone to save it – I thought: Yes. See, it’s very similar to MTV’s “Pimp My Ride.” Only, now it’s “Pimp My Leg,” and my possible future limp will really just be my *pimp walk.* Or, when learning about the donor-bone route, I thought how odd it would be to get someone else’s used bone. I wasn’t even a fan of second-hand clothes; now I’d have a second-hand femur?
Before my surgery, I performed “Bone-a-fide: A Tumorous Comedy” at the People’s Improv Theater in NYC. After the show, I remember one woman in particular who came up to me and thanked me. She shared her story of cancer and how she’d tried to keep it so secret and private. And there we were, two young women – one survivor, one soon-to-be survivor – *connecting* about our experience. How powerful that was to me. It was that moment which conjured one of my favorite quotes from The Labyrinth: “YOU HAVE NO POWER OVER ME!” And that’s how I wanted to consider my chondrosarcoma – you are my teacher, but you will not bring me down. Listen up cancer: You have no power over me.
Atlanta, Georgia
I woke up on 3/7/02 with double vision. That began the first day of the rest of my life. After going through 3 wrong diagnoses and prognosis of there is not a way to do a biopsy to there is no cure, I survived. My story is one of endurance and being an advocate for my own health. With the help of family, I was able to find the doctor that was able to do the biopsy, who diagnosed me with chondrosarcoma and then the long process of finding the treatment that would save my life. I had to find the right way, or I would not be here to talk to about it. I had to travel out of the box and do the research to find the cure. I found Dr. Liebsch and proton beam radiation. He saved my life.
My story is to tell anyone with a health problem that is not ordinary: do the research, don’t listen to the first doctor, get a second and third opinion, and find the treatment that you feel is the cure. Not every doctor will tell you the truth and doctors and hospitals are there to make money, especially if you are still one of the lucky ones with a good insurance plan. Be your own advocate. I am now NERD (No evidence of Recurring Disease) with chondrosarcoma of the skull base.
Spartanburg, South Carolina
The story I will remember from my battle with chondrosarcoma is about my daughter’s vote on our course of action. When my doctor diagnosed chondrosarcoma of the scapula, and told us that he would have to remove my entire shoulder joint, he provided us with two options how to proceed after removing it. One was a prosthetic joint, and the other was the Tikhoff-Linberg procedure, where they remove the joint, and replace it with nothing and tie the muscles into the clavicle. Both options had pros and cons. The Tikhoff-Linberg had the pro of no more surgeries after completion. The prosthetic runs the risk of having to be replaced in the next 15-25 years; however, it provides more range of motion and strength.
We were leaning towards the replacement, because of the things that I wanted to be able to do afterwards, and I consulted another CS patient who highly recommended the prosthetic. But we figured, “Let’s break it down to an elementary level?”, so we asked our 10 year old. We did not tell her of our votes. We just provided her with the facts. Without hesitation, she stated emphatically, “Dad, you are too active, and you need to go with the replacement!” This just blew me away that my 10 year old, who is very analytical and asks questions galore, looked through all the BS and knew immediately what she wanted for her daddy, and also what he wanted. She knew that I would not be happy unless I could do as many things as possible, even if it wasn’t as much as I could do before. Someday, when she is older and more perceptive, I will explain how much her vote meant and how much it opened my eyes as to what would make me happy.
