Written Spring of 2009
In 2002, I was sitting in the oncology department at Grand View Hospital crying. I was crying because my husband had suddenly been asked to go to the hospital after visiting our family doctor. It was a scary trip to the hospital discussing what ifs but it was even scarier hearing an oncology specialist say that he believed Ken had Non-Hodgkin’s lymphoma, a form of cancer that was, according to the doctor, curable. I was in shock as I called my friend to alert the church prayer chain, I was in shock as I watched them wheel him out on a stretcher for tests, and I was in shock as I made my way to the cafeteria for a bite to eat. That was one of the loneliest, saddest meals I have ever eaten. I listened to the hub-bub all around me, the friendly chatter among nurses and among doctors and surgeons and in the middle of them I sat crying. No one seemed to notice and if they did I looked down and tried to act unobtrusive.
It was the beginning of June when the world had come alive with spring and the heat of summer was fast approaching. My kids were in school yet, even Vanessa the youngest was in an all day kindergarten program. How could I tell them their daddy was in the hospital?
Thankfully, within a few days Ken’s parents arrived and after we got the kids off to school, we traveled together up to the hospital. Then I had to hear their fears as well. On the ride up, Ken’s mom admitted that a lot of his symptoms sounded like her dad (she whispered under her breath). So I knew that was bad news and then asked if he was the one that had died of a brain tumor. She shook her head. So many fears running rampant through our heads. Ken’s dad just calmly sat in the back of the car, motionless, wordless.
We visited with Ken but had to hold back our tears. It was so hard to see him at the young age of 41 being captured by this mysterious illness. I needed help and I knew it, so at lunch I suggested to Ken’s dad that we try to make Ken laugh somehow on our visits. I told him I could tell Ken was picking up on our tension and that I knew we weren’t being very good company, but I needed help to laugh. Well, Ken’s dad rose to the occasion and managed to lighten up the heaviness of that hospital room. We laughed about Ken’s old little league experiences, seeing his old coach, and the well-wishes that were sent from his hometown in Kalona, Iowa.
Soon Ken’s parents were gone and by that evening they had released Ken from the hospital with heavy doses of steroids and methotrexate. The disease specialist from GV had visited him and felt like he had classic signs of dermatomyositis, a rare autoimmune disease that attacks a person’s muscles and skin. We felt relieved but we did not yet understand his prognosis. It was going to be a long road to recovery.
When Ken came home, he tried to do a few of his regular activities and before we knew it, he was back in the hospital again because he couldn’t swallow. This time we went down to University of Pennsylvania and he was tested and probed. He stayed there for another week and was given pureed foods that made him gag. But the doctors were inches away from putting in a stomach tube so that he could take in nutrients. He had failed the initial test in the Emergency Room when they gave him a drink of water and it came out his nose. His muscles looked fine, no evidence of damage, but they were too weak to make many of his organs function properly.
Our two youngest children had gone with their grandparents back to Iowa, so we had only our oldest son, Patrick around at that time. I remember on one occasion we made the trek down to Philadelphia on a Sunday and at about supper time, I went over to the adjoining McDonald’s to get food for Patrick. He was 13 years old and found it difficult to sit still, so this occupied him. But the smell of the McDonald’s french fries was almost more than Ken could bear when all they delivered to him were different colors of ugly, nondescript food. He remembers this as one of his lowest times, smelling the food and not being able to eat it. (Of course I may have sneaked him a few French fries.) Soon Ken was released from the hospital and it was the three of us at home, watching movies late into the night and trying to see this undisclosed free time as a gift rather than a punishment.
He couldn’t even swallow his saliva and at night I would awaken to hear choking sounds. I was to make sure he didn’t asphyxiate, or get any liquids in his lungs and the first sign would be a fever. So I was on alert. It was at times like these that I lay awake and cried out to God, setting my hand lightly on Ken’s shoulder and pleading with God for healing and a miracle.
But worse yet was seeing the doctor’s apprehension about the disease. In the first few months when Ken continued to be in and out of the hospital, I remember a rheumatologist in Sellersville seeing Ken and then looking frantically through his medical books for answers. When Ken walked out of the room, the doctor repeated over and over while looking through his medical books, “He could die from this…he could die from this.” That was not reassuring to hear from a doctor and we soon switched to a rheumatologist connected with Abington Hospital who seemed more knowledgeable about Ken’s illness, and also more optimistic. And Ken did improve.
Amazingly, day by day, Ken began improving and after 2 months was able to go back to work for short days. Sometimes it felt like 3 steps forward and 2 steps back, but gradually he gained more strength and endurance. Sometimes the improvements were so slight, we didn’t even notice them. But by the fall of 2007, when Ken caught himself partway through a fall, he acknowledged that yes, his illness had subsided. Of course, we often wonder if he will fall victim to dermatomyositis again, and if a person is ever completely healed of an autoimmune disease…
But for now, we live by faith, thankful for what has been restored.
This June marks the 10 year anniversary since his diagnosis in 2002.