Cancer. Let the doctor throw that word at you and it will put your life into a different gear. There were times it seemed things were going in slow motion. And I was determined to take deliberate steps in dealing with the “Big C.” Since being diagnosed with cancer in January of 2006 I have become a blogger. But I am going to try and make some observations in the hopes others can find some understanding or, if you have gone through it, some camaraderie.
In January of 2006 I was on the floor wrestling with Maverick when I felt what I thought was one of his toys under my left shoulder blade. But when I rolled over there was nothing under me. I had Debbie look at my back and she saw a pretty solid bump under my skin right below the left shoulder blade. I made an appointment to see my physician who immediately had me take an MRI and CT scan. After those were completed he sent me to a general surgeon who made arrangements to remove the object. Of course, after it was removed it was sent for a pathology. It came back with a diagnosis of Leiomyosarcoma – first time I had ever heard the word. The cancer looked to extend outside the margin of the tissue removed so a few days later I was back in surgery to have the entire muscle on which the tumor had been attached removed. The surgeon had the original tissue sent to Harvard University to have it looked at there and they confirmed what the pathologist in Tulsa had said.
During March to May I underwent 37 radiation treatments to the place on my back. This was another surreal event. You first have to go in to be laid out under a huge machine that takes the measurements of the place where the treatment is going to be. They tattoo the place where the radiation is going to be concentrated. Once they have the crosshairs tattooed on you they create a template just for you to put on into the radiation machine when you go in for treatments. If it were not so serious it is kind of cool. The reality sits in when they set you up, get you centered correctly under the radiation machine then scurry from the room while the machine hums and does its thing. I got it from two different angles each day – 1 directly down at the on the back directly under the left shoulder blade and the other from the side under my left arm. Had some friendly banter with the technicians in the 8 weeks it took to go through the treatment. They claimed I would be my wife’s nightlight for a few months following the treatments.
During the radiation treatments Debbie and I read up on Leiomyosarcoma and decided to find someone who specialized in sarcoma cancers. We did find someone and had the records, slides and all other information sent to the Sarcoma Center of MD Anderson Cancer Center. After looking at my information, Dr. Robert Benjamin agreed to take my case and reclassified the cancer to Malignant Fibrous Histiocytoma. That new name sure made me feel a lot better! In June we went to Houston to meet Dr. Benjamin and get an action plan. It was decided Chemotherapy treatment was the best option in case any cells escaped to other places. The plan was I would return in mid-August to begin the treatment. Five 21 day cycles using two different drugs for 4 days then 17 days off.
The first round of Chemo went pretty well. I stayed in a Extended Stay Deluxe just around the corner from the center. The first couple of days consisted of getting MRI, CT Scan, X-ray, blood sample and a PVC port in my arm. My parents had traveled to be with me for the first round. I would go in for the chemo treatment each day for a 2-3 hr treatment of one drug. Then they would give me a backpack with the next chemical which would drip for the next 24 hrs until I came in for my next treatment. This went on for 4 days. I really felt no ill effects. By Labor Day weekend I sent my parents home and prepared for the next round. That weekend I broke out with shingles on my buttocks but the doctors in the emergency care unit gave me medicine that got it under control pretty quickly. I began to notice my hair was beginning to come out. Debbie and Maverick would join me for the 2nd round of treatment and stayed with me for the 4 days. Dr. Benjamin let me arrange for an oncologist in Tulsa to administer the 3rd-5th rounds. The second round were pretty uneventful although I began to have mouth sores – a side effect of chemotherapy.
The 3rd and 4th rounds would be administered in Tulsa. In Tulsa I had to actually check into the hospital for 4 days as they did not do the treatment outpatient as MDA did. Besides, my house was not just around the corner – I was 35 miles from the doctor since I live on the pond. As luck would have it I went neutropenic after the 3rd treatment and ended up back in the hospital for another 4 day stay to get antibiotics and Neulasta. The last day I was in the hospital I began to itch and get a rash on my thighs. I thought it was because I had been sitting in a hospital bed for almost 10 days. It turns out I was having an allergic reaction to the antibiotic. Over the next three weeks I molted. I lost a layer of skin all over my body. My DNA was all over the house. Every time I got up and walked around skin would fall off of me and leave a trail wherever I would go. I had to wait an extra week to start the 4th round of chemo. But it went like the 3rd and I ended up neutropenic again. With each treatment I became weaker and felt, literally, like my life was slipping away. I called Dr. Benjamin and told him I was not going to take the 5th round. I felt I could take no more. I joked it was the ultimate “Survivor” reality series. The chemo tries to kill you and you try to keep it from happening.
I returned to work December 26, 2006.
Cancer Is Bad But There is Still Something Worse
Cancer is a horrible disease which has too many names and affects too many people. I was am lucky and have caught a break. NED is what they call me now – No Evidence of Disease. I return to MDA for a check-up every quarter to keep an eye on this body to see if it comes back. It is kind of like going outside to play but having to keep an eye out for the bully on the block. I am not ignorant of the fact that cancer seems to come back more often than not. But treatment does buy a bit more time. Right now I feel great. I know I am fortunate for the original tumor to have been somewhere other than an organ.
A preacher I once knew used to pray, “May we never forget who we are, whose we are, and where we are going.” Having a great heritage in Christianity and a personal relationship with Jesus and God I do not forget. Living life without purpose is worse than facing a disease. So every day is a good day with opportunities to sharpen and be sharpened (Proverbs 27:17). I love music more than ever. I appreciate my wonderful wife’s sacrifice for me and Maverick. She works so hard to provide a clean home, great meals, and a loving environment in which we live. Enjoying ballgames and playtimes with Maverick are building memories. Revisiting memories by going through old pictures has become a fun (when is the last time you looked through your old photographs? Why did you take them?) activity. And I find it amazing to have all the information that is available on the internet.
I am finishing this on Easter morning – maybe not a coincidence. Because the fact is this life is not all there is. My faith tells me there is more on the other side. My experience with the “Big C” makes me pay attention to the experiences of the here and now a little more closely. To use the phrase of a great hymn, “Because He lives I can face tomorrow.” Every day is truly a gift and I unwrap the day with no regrets.
I hope this cancer post finds its way to some folks who will find some comfort and or maybe a catalyst to a more positive outlook on life.