My cup is kind of full today. I’m afraid some may spill out. I’ve recently been diagnosed with cancer yet again. This isn’t my first rodeo, nor my second. This is the third separate occurrence of cancer in my 50 years of existence. This time cancer has attacked the soft tissue inside my throat. I underwent a right side tonsillectomy over a week ago and I just received the biopsy report. I will be consulting with the doctors next week to determine the best treatment options for me.
For the past 20 years I’ve had cancer but I’ve not allowed cancer to have me! I am considered a long term cancer survivor and achieving this status has brought about it’s own consequences. My first surgery back in 1998 was to remove an ependymoma from inside my cervical spinal cord. This surgery created an incomplete spinal cord injury at the C2 – C3 level. After the tumor removal and cord resection, I underwent 5 ½ weeks of radiation therapy at maximum cord dose plus a 500 boost. The radiation therapy was recommended due to the inability to remove the tumor in it’s entirety without creating a complete spinal cord injury and rendering me a complete quadriplegic.
After several months, I recovered quite nice from this first occurrence and it wasn’t until 4 years later that I started having gross motor function disruption due to spinal stenosis and kyphosis. Due to the first surgery to remove the tumor my spine itself suffered structural problems. My c-spine began to compress causing pressure on my spinal cord. After consulting with both a neurosurgeon and orthopedic surgeon, I underwent cervical fusion from C2-C5. They performed a discectomy and installed a titanium plate to fuse my spine. This surgery was a great success and brought back my lost functionality.
In 2005 during a routine dermatology exam, it was discovered that I had a melanoma lesion on my back. Now I’ve had minor basil cell carcinomas in the past but never a melanoma. This is the big league of skin cancers and very scary. I underwent a wide incision procedure to remove the lesion and the affected tissue around the area. I then had a sentinel lymph node biopsy to determine whether or not the cancer has spread in to the lymphatic system. Fortunately for me, it had not.
In late 2009 I started have more numbness and tingling in my extremities. After getting the correct MRIs it was discovered that the residual ependymoma tumor had started to grow inside my spinal cord again. I was scheduled for an immediate surgery to deal with this recurrence. This time there was permanent damage done to my spinal cord during the surgical procedure which left me a C2 ASIA D, walking quad with Brown Sequard Syndrome. I had paralysis with loss of temperature and pain in my lower left quadrant and weakness in my upper right quadrant. I couldn’t control the movement of my right arm nor open and close my right hand. Additionally, for the second time, they were unable to remove the entire tumor.
After my own intense research, I discovered the Collaborative Ependymoma Research Network(CERN). In conjunction with CERN and MD Anderson, I underwent a clinical trial to use chemotherapy to treat my residual tumor. It was a year long program that combined the use of a breast cancer chemo pill and temodar a very popular cancer drug. This was a tough year for me. The chemo drugs wracked all sorts of havoc on my body. It was during this time that I realized what it really felt like to wake up and still be tired. This would become my new norm. As it was described to me many years later, my body functions at the 60% rate yet I try to use that 60% at the 100% rate. Basically, I stay tired.
In the beginning I did not enjoy being shoved in the MRI machine. Now after having MRIs every 6 months since 1998, I sleep through the exams like they’re nothing. I’ve developed new tricks to compensate for my loss of functionality. I’ve been using a prosthetic arm therapy device for the past 6 years which has enabled me to regain some gross motor function of my right arm however there is still loss of sensation and strength. Opening a bottle of water is always a fun game because I never know if its going to open or open and spurt out. Thank God I’m left hand dominant.
My disabilities are mostly invisible. Most people don’t know the true extent of my physical limitations. I often get dirty looks or judged for parking in handicapped parking even though I have permanent handicapped plates. I’ve learned to ignore these ignorant people for the most part but surprisingly enough, I’m even judged by my own disabled peers. I truly respect and admire my peers who use wheelchairs. For me it’s not a question of if I will use a chair, its when.
Again, being a long term survivor has it’s issues. After I get through whatever course of action will be used to treat my current cancer, I will be scheduled for yet another discectomy to remove my disc at the C6 level and fuse the spine. Due to the previous spine fusion 14 years ago, I’m suffering from what is know as adjacent disc disease where the disc above or below the fusion site begins to fail. This is creating additional weakness and loss of sensation throughout my body.
I’m blessed to be a live. I don’t take anything fore granted. I have great children, a beautiful wife and a nice home to live in. We’re making modifications around the home to make my life easier. I enjoy my volunteer work for the Paralyzed Veterans of America – Wisconsin Chapter. This volunteer work provides me a much needed outlet to feel useful and stay connected to my military family which I’ve been surrounded by my entire life. Taking care of Soldiers is what I know and what I do! Hoooah!
Stay tuned for more updates as my journey continues……….
Scott E. Griffith
Government Relations Director/Treasurer