It was a beautiful day to hike -snow, sleet, ice, 30 degrees, cloudy but I clamped on my cleats to my hiking boots and went 5.1 miles. Tired? Yep, but totally in awe of the beautiful landscape of the icy Thornapple River, sparkling snow laced trees, frozen country roads through the woods and over the hills …
Four and a half years ago I heard a surgeon say, “I think your leg will require amputation.” Another said, “Tough it up soldier and let them take the leg.” (First, I am a retired Air Force pilot and love my soldier family and friends but this was completely out of line and my wingman, Deborah, almost took him out). Sarcoma (myoepithelioma) had been found in my heel and had metastasized to the lymph nodes in my upper thigh/groin due to misdiagnosis of heel pain and discomfort.
I must say that this is not the story of one person fighting cancer but of two. My wife of 43 years and breast cancer survivor as well, Deborah, is the caregiver of the century. I think there should be a contest.
After a local surgeon removed a piece of the tumor (planned to get it all but found it needed an expert), we were on our way to the University of Michigan Cancer Center’s sarcoma experts. Enough tests to fill a book and we were into a four hour surgery with three surgeons — orthopedic oncologist surgeon, plastic surgeon and general surgeon cancer specialist. All did a wonderful job and I kept my leg with part of my heel missing and the lymph nodes removed.
A moment of humor pre-surgery was with the anesthesiologist team when my blood pressure dropped while they placed the spinal (they explained I would need it for pain control after the surgery) and I fainted. I had just read “The Shack” and when I came to I thought maybe I was seeing God face-to-face. Dr Green was a wonderful doctor and was so thoughtful and caring when she brought Deb back into the prep room to encourage me a bit with her concerned smiles, words of faith and hug.
Recovery was long and required a lot of hours at the physical therapist but I was walking and took a lot of oxycodone but Dr Biermann (orthopedic surgeon oncologist) had saved my leg with her skills and I resumed my active, happy life believing that the cancer was gone. Each time we did the 3 month MRIs (two hours in the tunnel of love) and the chest xray, we prayed and were supported by prayers from family/friends literally around the world. Approaching the three year point of diagnosis we were surprised by a phone call from our local oncologist asking me to come in for a CT scan of my chest. Our concerns were met with what looked a nodule in my left lung.
More tests (PET CT, etc.) and we were back on the operating table for a lung resection of the nodule. They took a wedge, not the whole lobe and I tolerated the surgery well due to being in excellent shape for a 64-year-old according to the doc. The follow up CT scan six weeks later brought bad news: more nodules were found in both lungs. We met several times with two medical oncologists, our local one at the Lemmen Holten Cancer Center in Grand Rapids and Dr Chugh at U of M.
Summer and fall went by fast as we continued our gardening and canning for the winter months and I kept walking on a nearby beautiful nature trail. Because we were facing a long winter drive we decided to do chemotherapy locally with Dr Chugh directing. I would say it worked pretty well but connecting two systems of blood work, scans, etc was a bit challenging.
We did four rounds of Gem/Tax starting on Christmas Eve 2013 and my lungs were done. Doctors suspected an infection so I had a paid vacation in the hospital (sarcasm intended). Is it ever possible to sleep as an in patient? I had so many blood draws they had to give some back. Haha. At one point I had blood being drawn from each arm and my port. I could have made that my Facebook profile picture, but it was not “pretty.”
Steroids finally kicked in and I was homeward bound. I walked the deck from end to end regaining strength then went to the driveway (a very steep hill involved) and labored at each breath but then the road and trail drew me farther and farther. It was time to start the gardening but I was still short of breath.
Then the Grand Rapids 28th Street Home Depot team showed up! An amazing story itself, they help veterans in their local area and heard I liked a big garden and was recovering from cancer treatments. Twenty folks came to rotor till, remove stumps, repair a deer protection fence and plant the plants and seeds they provided for free. I am eternally grateful for their efforts.
After a very wonderful spring and early summer holiday from chemo, we decided to do a clinical trial for aldoxurubicin and doxurubicin. I was placed in the doxurubicin track and had six rounds which stabilized the nodules in both my lungs and liver (we had found nodules in my liver during follow up scans). There were some great benefits from the clinical trial due to careful monitoring of my heart, kidneys and liver, higher doses and extensive blood work to monitor side effects. I lost my hair again but it is in style and I could fit right in with the Army Rangers that used to jump out of my aircraft.
The hair was humorous and the side effects were pretty minimal, but I hated the fatigue. Nausea was controlled with meds and I kept walking right through the trial. I use a GPS program on my cell phone and love how it tracks and stores my results so I can have a goal to reach. I also use the phone to listen to music which stirs my soul and is so therapeutic.
I will never be “cured,” but each day I spend with my 10 grandkids brings special moments. Maybe clinical trials will provide new treatments for sarcoma and more cures will be found? I hope to dance at each of their weddings and that means a lot more chemo holidays and hundreds of miles on these feet.
Prayers for my fellow sarcoma warriors and their families. It is a battle well worth the effort!
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!