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sarcoma story, as a patient,
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a loved one to sarcoma.
Type of Sarcoma: Synovial Sarcoma
John’s diagnosis of synovial sarcoma came in June of 2009 after almost two years of missed diagnoses. His symptom was a bump just below his knee. The repeated diagnosis received was lipoma--a fatty mass--that was not harmful. The providential moment was while chasing our young daughter around after church, he bumped the ‘bump’ and the pain made him decide that the mass must be removed. And it was. Under a local anesthetic, with a general surgeon that had no specialty in dealing with cancers. There should have been imaging, there should have been a sarcoma specialist, but when most primary care providers see just one case of sarcoma in their career, how can you expect early and appropriate diagnosing??
John was a pilot for many years--commercial and corporate. He LOVED his job but unknown to us at the time, his career would just become another thing lost to this disease. On his last flight, one that had taken him out west, he received his official diagnosis over the phone. That was a sad, frightening start to our summer. Our three children were, at that time, 11, 9 and almost 5.
After a confirmation of diagnosis at Mayo Clinic, we decided to move forward with treatment at the University of Minnesota. Treatment consisted of four rounds of chemotherapy (ifosfamide and doxorubicin), surgery, and then radiation. Overall, treatment went well. The side effects of chemo were a bit brutal at times, but we had wonderful family and friends who supported us every step of the way with meals, visits, uplifting messages on CaringBridge, and many prayers from dedicated prayer warriors! That was a rough year, but we made it through and celebrated the miracle with a trip to Florida with the kids. We went to Sanibel Island to play in the sand, hunt for seashells, and eat ice cream! It was a wonderful trip!
Unfortunately, barely a week home and one year to the date of his diagnosis, John received word that he would no longer have his flight job. That was a crushing blow--I honestly do not know which was worse for him, getting cancer or no longer being able to fly. Though never officially diagnosed as such, he was very depressed. There was just so much stress that came with cancer, and it touched so many facets of our lives. I recall, in particular, a moment when John and I met with Dr. Dusenbury in a post-radiation follow up. The radiation was hard on the lymph system in his leg and along with drop-foot from the surgery, he now also needed to wear a compression stocking all the time to manage swelling. I ran from the room in tears. It seems silly after all the other things endured, but it was somehow this little thing that just pushed me over the edge. It was a daily, forever reminder of the cancer that lay in wait.
Life was good for a few years; the kids grew and kept us hopping with all things kids are supposed to do: swim team, boy scouts, girl scouts, and birthday parties. Every few months the scans came and went with stress, but the three little spots that had existed in his lungs since diagnosis did nothing. Until the spring of 2013. Then they decided to grow. Who knows what flipped the switch, but two out of three of those spots were in fact metastatic disease. Surgery was all that was needed and after recovery, life went on. But one year later, we were in the ER with John for chest pain. More metastatic disease was found in the plural of his lungs, more surgery was needed, and this time it had to be followed up with chemotherapy. Unfortunately, none of it helped. We tried another drug and it didn’t work either. On December 1, 2014, John had one more chest surgery. But by the time he went in for the post-op check, it was growing again.
It was at this time we decided a break was needed. The year had been exhausting. We never discussed it, but I knew in my heart that 2014 would be our last Christmas with John. It was during this time that some beautiful friends decided to help John fulfill a wish to take his family to Disney World. We went right before Easter of 2015 and were blessed with over a week of ‘Goofy,’ fun-filled times! The break we had from chemo, surgeries, and cancer was wonderful and MUCH needed.
Upon our return from the trip, it was time to get back to the cancer world that seemed to dominate our lives. The cancer was continuing to grow in his lungs--you could now feel the masses from the outside. The spot on his chest where I would lay my head when curled up with him at night was now taken over by this intruder.
We had one more drug to try, which we began in late spring, but it seemed to cause some challenging side effects. We were unsure if they were from the cancer or from the drug. Treatment stopped. It was now time to talk about hospice care. Unfortunately, we had a brutal hospice benefit: our insurance only covered 30 days of care. This was agony for my poor husband as he did not want to deplete the limited financial resources we had. No clear guess was given to us from the doctor other than, “I would be surprised if you were still here at holiday time.” While it was only June, a decision of home health care was made until a more ‘definitive’ time for hospice presented itself. That time came within a few weeks. John landed back in the hospital with an internal bleed -- he had been on blood thinners for a DVT. It was then that he decided to discharge from the hospital to hospice care. We brought John home. On his second night home, with me and the kids surrounding him, John died.
I feel it is poignant to say that Rein In Sarcoma was part of our cancer trek. From the summer of his initial diagnosis, we attended Party in the Park annually, along with participating in other events and helping with the Red Flags effort. John enjoyed these times greatly! He passed away the day after the 2015 Party In the Park. I know he is proud as we all work hard to change the sarcoma story!