My family and I are from British Columbia, Canada. After many months of pain in my head, burning sensation in my gums, cheek and lip and sporadic eye pain I was finally diagnosed with having a skull base tumor.
I was on my own at an early age and worked very hard to get to where I was. I had the top job I always wanted and the respect of many people for my hard work. I was not sure why the pain in my head was increasing and, as stubborn as I was, I continued to work until I could no longer function or bend down. I had helped so many physicians with my work that I was lucky to have them all by my side when I needed them. I was rushed for tests (and more tests), and I could see the looks change as the doctors I trusted so much came to talk to me and explain all they could without truly knowing what they were seeing. Something had grown from my skull base and broken through two cavities in my head. It did not look good.
The MRI showed a right petrous apex lesion. This was the worst possible location, and a biopsy could not be performed. The doctors were not sure if the tumor was a chondrosarcoma or chordoma, but apparently I was "one in a million." I couldn't believe that I had just had sinus surgery to relieve this pain - how was this not found???
Now the journey that would change my life forever began, and I needed to find someone to save my life. My scans were sent all over to the "best of the best." I did my research, and I knew who they were. It came down to two different surgeons who proposed two different treatments...one that would surely almost kill me.
The radiation therapy that we have in Canada, at the level needed for sarcoma, would be too invasive, but radiation was necessary. I got the support of the Canadian medical system to travel to the US to receive proton therapy. The Canadian system covered the treatment and doctors' visits, and I just had to find myself a home in Loma Linda, California for a few months. I was lucky to have a great group of friends and family who gave me the strength and encouragement I needed to take this journey.
After having more scans, x-rays and ultrasounds, more tumors were found on my ribs and scapula, probably benign enchondromas, as well as multiple thyroid modules. I was later diagnosed with a rare genetic condition called Ollier's disease, or enchondromatosis, which is usually diagnosed in childhood, but we never knew.
It was almost too much to bear, too much to understand or take in. I made my children photo albums with pictures of our lives together and a letter to tell them how much I loved and wanted them, and that I would be okay. I was trying not to lie and praying everything would be fine. I made it through surgery, and I was ecstatic I made it this far. The pathology from the tumor showed that I had a low grade chondrosarcoma.
My surgeon, who specialized in skull base surgery, saved my life. He was able to remove all of the tumor and reconstruct the damage it had caused. I now have many titanium plates, screws and mesh where there used to be bone. It still amazes me. I chose open surgery because it provided me with the best option for a long future with little complications. They would not have been able to remove the whole tumor using an endoscopic approach.
These tumors like to regrow if not treated, and chemotherapy and conventional radiation do not affect them. So in November through February 2010 I received proton radiation therapy in Loma Linda, California, to treat the effected site for residual cancer cells. Because of the rare type of tumor, this was the only treatment available.
After all this time, I still deal with a burning sensation. I am deaf in my right ear and have dry eye on the right. I also deal with tinnitus and trigeminal neuralgia. My only pain-free period each day is right after I awake for about twenty minutes, but I'm still alive and cancer free.
Fortunately I have a supportive family and am on long-term disability with a great pain management expert and am being monitored my sarcoma and genetic specialists. I have a higher risk of sarcoma recurrence because of a genetic condition where enchondromas may mutate to sarcoma. I am thankful that I have not passed this on to my precious children. There are good days and bad days...and then some really bad days. I pray a cure will be found in my lifetime. I try to remember, each day is one I almost didn't get, and the biggest gift I have to give is myself.
I have been diagnosed with trigeminal neuralgia, nerve damage most likely from the sarcoma. I am just focusing on one thing at a time. I enjoy rock collecting, huckleberry picking, gardening, outdoor adventures and sleeping. Unfortunately I still have a lot of fatigue and get worn our easily. Serving as a mentor for others going through similar situations has helped me give back and allowed me to continue to learn. I look forward to future opportunities life may bring my way.
Thoughts for New Patients
Reach out for support and advocate for yourself. Don't let your pain be dismissed. Get involved and give back when possible. Staying positive will go a long way, and being around positive people will always help. Stay strong and courageous.
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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.