Sweating the Small Stuff

The following is autobiographical, but I’ve changed the names for family privacy.

Sweating The Small Stuff

As I was leaving the house to make a trip to the grocery store last spring, my wife Mary grumbled, “I wish Josh would tell me when he’s planning on staying overnight with friends.”

Josh, our 33-year-old son had been living with us for the last nine months. Wow, I thought. Talk about sweating the small stuff. In my car, I savored the thought as relief washed over me.

The previous summer, I’d come in from working on the garden the day after Memorial Day and undressed to take a shower. Mary told me that Julie, our daughter, had called earlier in the afternoon. She wanted to talk to me and wouldn’t tell her mother what it was about. That’s never a good sign.

I called Julie, and she told me that Josh and Beth, his girlfriend, were in her living room. Josh was having difficulty breathing. X-rays at the local hospital indicated he had fluid around both lungs and around his heart and had a mass in his chest. The doctors told him he should have a CAT Scan to refine their diagnosis. Josh’s medical insurance was through the university, but it had lapsed because the school year had ended. The CAT Scan alone would cost over a thousand dollars.

As I hung up, Mary asked me what the problem was. I told her about the fluid around Josh’s lungs, but decided not to mention the mass in his chest. No reason for both of us to be scared. I showered and we drove the 50 miles to Julie’s house, Mary talking about Josh’s presumed pneumonia, me desperately trying to think of an infectious disease that could cause a mass in the chest.

It was late afternoon when we arrived. Josh was pale and everyone was quiet. It was obvious we had to take him back to the hospital and worry about the money later. Josh had the CAT Scan and was admitted for surgical drainage of the fluid on his right lung and biopsy of the mass the next morning, as a thoracic surgeon wasn’t available until then. An Oncologist told us that Josh probably had a B-cell leukemia, a subset of Hodgkin’s Lymphoma. We shouldn’t worry, as the five-year survival rate for Hodgkin’s Lymphoma was over 85%. Josh spent the night in the hospital on oxygen, his breathing so labored we worried whether he could make it until morning for the surgery.

The surgeon drained 1,700 mL of fluid (almost half a gallon) from Josh’s right lung and biopsied the mass. Much improved, Josh was sent home the next day to wait for the pathologist’s report. The following Monday, Beth called to tell us that Josh was back in the hospital. He was having difficulty breathing again and felt pain and pressure in his chest. Chest x-rays found that the amount of fluid around his heart had greatly increased. The fluid was making it difficult for the heart to beat normally and was also affecting his breathing. A cardiologist would have to examine Josh before the fluid was drained, and the surgery would have to be done by a cardiac surgeon. Neither were available until the next day. The pathologist had also requested a larger piece of tissue for examination, as the original biopsy sample hadn’t been large enough to make a diagnosis. Josh was again hospitalized overnight and put on oxygen until the morning.

Mary and I held each other and cried when we got home. We both feared Josh might not make it through the night, and I suspected something else wasn’t right. I’m a veterinarian with a PhD in microbiology, 19 years of experience in rural practice and nearly 20 years of experience in research, frequently working closely with pathologists. I’d learned that when a pathologist requests more tissue, it often means that the presumptive, or initial, diagnosis was wrong. In this case, almost everything other than B-cell Hodgkin’s Lymphoma would be worse.

We were told that the hospital schedule was tight and the surgery might not take place until several hours after the cardiologist saw Josh. Josh had to wait until 10:00 a.m. before a cardiologist was available. By that time, I was again near tears as I watched Josh in pain and struggling to breathe. The cardiologist arrived and spent less than 5 minutes examining him. Schedules were changed and Josh was being prepped for surgery ten minutes later.

The surgeon removed 800 mL of fluid from around Josh’s heart and placed a tube in the pericardium (the sac around the heart) that drained to a vial kept in a pocket of Josh’s hospital gown. He also collected an entire lymph node for the pathologist. Josh was hospitalized for four days, the drain was removed, and he was sent home. An Oncologist talked to us again, and again stressed that the most likely cause of the mass was an easily treated form of leukemia.

Josh was feeling well, although removal of the drain had been painful. He was discharged from the hospital, and we drove back to his apartment. He packed a suitcase and moved in with us until the pathologist could examine the new tissue sample. The following Friday, we drove back to the Oncologist’s office to hear what the pathologist had found and what the course of treatment would be.

Josh and I were called into the doctor’s office shortly before noon, and a few minutes later the doctor entered, carrying the pathologist’s report. He said hello, but for several minutes sat quietly reading the report and reviewing Josh’s records on his computer screen. This seemed odd, as there had been ample time for him to review both before our visit. The doctor seemed to be delaying talking to us, as though he didn’t know how to begin.

At last he turned to Josh. “You, ahh … I’m sorry to say the diagnosis has changed.” He turned back to his computer screen and shuffled through the report on his desk. He avoided eye contact when he turned to speak to Josh again. “The pathologist found that you have a rare and aggressive form of leukemia. Results of treatment ….” The doctor looked at the paperwork again. “Results aren’t as satisfactory for this type of non-Hodgkin’s Lymphoma. You have A.L.L., or Acute Lymphoblastic Leukemia. I’ll be happy to treat you here, but ….” The doctor finally looked Josh in the eye. “Since your family lives in Omaha, you can also go to the University hospital there. They are very good and are world leaders in research on A.L.L.”

We discussed Josh’s options with the doctor and learned that the first chemotherapy treatment would sterilize him. He could bank sperm, but that would require delaying treatment for a week, and he doubted whether Josh could afford that delay. It was apparent the doctor felt uneasy treating A.L.L. and preferred that Josh go to the University of Nebraska (UNMC) hospital. The doctor had already discussed his case with the UNMC Oncologist who specialized in A.L.L., and they were holding a room for him on the seventh floor, the floor reserved for cancer patients. We drove back to Omaha and Josh was checked into the UNMC hospital at 3:00 p.m. Preliminary medication to protect him from the effects of chemotherapy began immediately and the first chemotherapy treatment was started at 2:00 a.m. on Saturday morning.

Josh spent two weeks of every month in the hospital, from July to January. I have never seen a kid as sick as he was after each treatment. Several times Mary and I weren’t sure whether he would survive the chemotherapy. He developed ulcers in his mouth that made eating and speaking painful after each course of treatment. Twice he developed septicemic bacterial infections from the ulcers because his immune system had been wiped out by the treatments. In the worst of those episodes, his temperature went from 100 degrees to 104 degrees in the two hours between the time he was admitted to the hospital and when a room was ready for him. He became delirious the next afternoon as the infectious disease specialist was examining him. He was in and out of delirium for the next four days. I read to him when he was coherent during that hospitalization because he didn’t have the strength to hold a standard paperback book.

From the beginning, Josh was given wonderful medical care. In January, tests showed that he was, at least for the moment, cancer free. Treatment was changed to a monthly, low-dose of chemotherapy. In March, when Mary complained about Josh staying out late with friends, I realized what a treasure it is to be irritated by the small stuff again.

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