When my husband, Dana, was eight years old, his eye doctor discovered retinoblastoma tumors in both eyes during a routine examination. Dana grew up in a very small town, so the ophthalmologist sent him to a larger city to consult with a specialist. From there, Dana traveled to New York for a three week stay and radium treatments for eight minutes at a time, three times a week.
Fortunately, Dana did not lose his eyesight, and his tumors stopped growing, though they remain in his eyes to this day. Dana was cancer free for the next thirty-five years. We were married in 2000; Dana was thirty-seven and I was thirty-nine. We believed he had the cancer licked.
Then, in 2006, a small tumor appeared on Dana’s right thigh. His doctor told him that he didn’t think it was anything more than a fatty tumor, but if Dana wanted a surgical consult, his doctor would set it up. Dana did. The surgeon also said that he thought there was less than a one-percent chance that it was cancer, and an outpatient surgery was scheduled. As soon as the surgeon saw the tumor, he said, “We’re sending this off.” A few days later, we got a call from the surgeon. Dana was diagnosed with leiomyosarcoma.
That first year, we were pretty lucky. Dana had additional surgery on his leg to improve the margins outside the tumor area, the X-rays showed that his lungs were clear, and radiation treatments weren’t too bad. Dana was able to do his treatments, and then head off to teach at the community college. There was one bad time when the radiation burns were so bad we couldn’t travel to his mom’s house for Thanksgiving, and his brother had plans with his wife’s family. Dana felt guilty about his mother being alone on Thanksgiving Day, but we all got through it. Then, the next year, the cancer showed up in Dana’s left lung, upper lobe.
Dana had a very difficult and painful surgery with a surgical oncologist. The recovery period was very difficult. The after-surgery care was not as good as we had expected with a hospital of the caliber of the one where he was treated. However, again, we got through it, and life went on… for four more years.
Once again, the cancer came back, this time with a vengeance. The tumor attached to parts of two ribs this time. We ended up at a different, also very highly-rated hospital, this time with a world-class thoracic surgeon. The tumor and parts of the lower lobe and two ribs were removed, and this time Dana would have to have chemotherapy. He had a drug referred to as the “red devil.” The dosage he received was a lifetime dosage of this particular drug. The effects were pretty rough, but Dana came through like a trooper. He started the treatments in November, and had one treatment before we were scheduled to attend The Monkees concert in New York. He should have had an additional treatment before the concert, but Dr. Harish, Dana’s oncologist, allowed him to postpone this until after he attended the concert. This concert was wonderful medicine. In April, Dana got to ring the bell as he ended his treatments.
Since April of 2012, Dana has been through three more surgeries to remove tumors in the right lung and twice in the left bronchial tube, two more types of chemotherapy treatment, additional radiation, and a horrible treatment with the biological drug Votrient, which not only had really awful side effects, but also was not terribly effective. The last treatment, which ended at the end of this past October, was an older chemo treatment, and it was effective. His tumors are stable, the bronchial tumor was not in sight at the last bronchoscopy, and Dana is currently on “surveillance.” We have one additional challenge waiting. We have known for some time that there is a mass on one of Dana’s kidneys. It had not been growing, but now our sarcoma specialist and oncologist both want to have this mass removed. They think it may be renal cancer, but feel confident that it isn’t the leiomyosarcoma. We have the consultation at the end of December.
Throughout all of this, Dana has kept his sense of humor and remained in good spirits. He has such a positive attitude that our friends are amazed by him, as am I. I know his spirit and attitude have had a great deal to do with his longevity. Dana has been considered stage 4 since the tumor first metastasized to his lung seven years ago. He is determined to live as good a life as he can for as long as he can, and we are treasuring each day we have together. Dana is my Wednesday Warrior.
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!