Milton Keynes, United Kingdom
It’s January 2009, and I’m walking along the Euston Road in London to my yearly check up at University College Hospital’s sarcoma clinic. I’m thinking back nearly seven years to a moment in 2002 when I was in this same place.
An ambulance hadn’t arrived to bring me back to my ward at UCH Middlesex from a pre-chemo hearing check in another part of the city. I’d had to haul myself out of my wheelchair and into a cab. This had proved difficult because I’d just had an above knee amputation for the leiomyosarcoma in my tibia. I sat looking out at the crowded pavement where I’d often walked on my way from Euston Station. The cab stopped in the traffic in front of a construction site, and I realised that the building beginning to rise through the scaffolding was the new University College Hospital, which would eventually house the Middlesex hospital’s oncology department.
In that moment I was sure I would not live long enough to see the hospital completed, to be treated there or ever again be a part of the crowd walking freely along the street. That was one of my lowest moments.
Each year now when I walk from Euston station to UCH on my brilliant high tech leg, I remember that moment and feel a huge gratitude to every one of the people who helped me get to this point, especially the oncologist at my local hospital who swiftly referred me to UCH’s sarcoma specialists for diagnosis and treatment.
Please support International Sarcoma Awareness Week: July 18-26, 2009.
A few years ago, when I was rushed to hospital for acute pain in the abdomen, I could not imagine that the cancer which took my first husband from his young family would also choose me as one of its victims! I am not genetically related to him; we did not grow up in a similar environment — his was urban, mine rural. Even our nationalities were different. The odds that both of us would be afflicted by the same rare cancer, a LEIOMYOSARCOMA, are nearly incalculable. Yet that is what has happened.
I read the pathologist’s report, and in shock and disbelief, I gasped, “God! I am glad my children are grown up this time!”
I was diagnosed with leiomyosarcoma of the heart in May 2006. After surgical removal of the tumor and five months chemotherapy, I was in remission for almost two years. My doctors performed chest and lung scans every three months that entire time, making sure that the cancer did not return. During most of that period I experienced a minor nagging pain in my fibula similar to a “shin-splint.” After months of it just not going away, I insisted on getting an x-ray. Sarcoma had returned, far from its original site. The tumor was not very big, and my lungs and chest continue to be clear, so I am now undergoing chemotherapy again.
My reason for sharing this part of my journey is to remind patients, families, friends and caregivers that sarcomas are unpredictable. As the patient, you know your body better than anyone else. Or you might notice a small change in a loved one that could go unnoticed by someone not as close. If you or your patient have any minor aches or pains, please let your doctor know, and make sure he or she takes it seriously! Our doctors are wonderful and they are doing everything that they can to help us, but we must also take a proactive role in our own care that others simply cannot do.
My journey with sarcoma has honestly been a very positive experience. It’s so beautiful to see and feel the love of your friends, family and even strangers. God is so good! He is the one in control of our lives and I place my life in his hands everyday! That is where I feel safe!
I met Doreen Kossove through the leiomyosarcoma list on ACOR. For 8 years we were best friends, sharing everything every day when we were able to. There were many hilarious moments as well as sad ones…how to choose from 8 years of moments!
I visited her in South Africa before she moved back to the US for treatment. They drive on the left side of the road there, and deep ditches run alongside the roads to carry off heavy rain. Imagine Doreen driving at breakneck speed in a falling-apart sedan, lurching wildly from side to side, regardless of traffic and buses so overstuffed with Africans that arms and legs were sticking out the windows!
She lived life to the fullest whenever she could. The world is suddenly quiet now that she’s gone.
Kernersville, North Carolina
No matter how much you try, you’re never ready to lose ALL your hair! The night I stepped into the shower and began “shedding,” I lost more than half my hair. I stood there, feeling the hair wash down over me, and thought, “Now everyone will know. No more hiding.” My friends and family all knew of course, but now the strangers in restaurants and at the grocery store would know. It was as good as if I’d screamed out to the world “I have Cancer!” My private fight was becoming public.
After I stepped out of the shower and scraped the remains of my blonde curls from the drain, I had my husband, Bryan (the love of my life), shave my head…into a Mohawk!!!! He and I went upstairs, woke up the kids (ages 8 & 11), and let them take pictures of Mommy with a Mohawk! We all laughed a lot, took turns rubbing the bald sides of my head and fluffing through the tufts of hair remaining on the top. Later that night, Bryan shaved it all off, but I knew it would be better for all of us if mommy didn’t go to bed “with hair” and wake up bald.
It’s all about keeping it normal for my kids. They look to us for direction on how to hand the tough stuff in life and uterine leiomyosarcoma is tough. But, they’ve learned, we’ve all learned, that together we are strong and that prayer, love and laughter will get us all through this.
In January of 1999, did I know that a trip to the emergency room would change my life? Little did I know it would be one of the hardest things I have ever gone through in my 27 years of life. I was a single mother of two, Michael age 7 and Mickaela 2 1/2 at that time. My doctors told me I needed emergency surgery and it was performed that evening with them finding a mass in my vaginal/rectal area.
The frozen sections during surgery came back benign. I thought this was wonderful and went on with my life and recovery. Two weeks later, I receive a phone call letting me know the pathology reports had returned, their findings of a high grade leiomyosarcoma and the margins were not clear and I needed more surgery!! I had 3 colon resections and a hysterectomy in 4 months time!!
I went to the Cleveland Clinic for a second opinion on my last surgery and the doctor there agreed with my doctors in Kentucky that I needed a complete vaginectomy and a colostomy…I sat down with my oncologist and spoke with him about the vaginectomy and let him know that I had to be able to mentally live with this…we agreed on a partial vaginectomy. I then had to deal with my colorectal surgeon on the colostomy. I knew my doctors had given me a 15% chance to survive without the surgery. They told me it was very aggressive and would kill me if I did not do the surgery.
On August 1, 1999 I had a partial vaginectomy and a colostomy!! It has changed my life, and I wish there was someone for me to talk to when I was sick. I have been able to watch my son grow into a fine young man (now 17 and a basketball player). Mickaela is now 13 and growing into a fine young woman. I know this dragon can lay dormant and return! For now I live my life as normal as possible and am grateful to see my children grow up! I will continue fighting for a cure and I always have had a wonderful attitude about my sarcoma!