Editor's Note: This is the fourth in a series of articles written by San Antonio anesthesiologist Jay Ellis, MD, a member of the Bexar County Medical Society Communications/Publications Committee. The series, published monthly in San Antonio Medicine, examines the physical, emotional, financial and spiritual burden of life-threatening illness. Check out part I, Dealing With Cancer, part II, Getting Ready for Chemo, and part III, In the Chemo Room.
The enthusiasm generated by my CT scan results was not a match for the reality of continued chemotherapy treatment. The excitement about my CT scan continued with my visit to Greg Guzley for my next chemo. I felt as if I had reached a major milestone. He tempered my enthusiasm. After my physical exam, I thanked him for saving my life.
“You aren’t out of the woods yet,” he replied.
“I know, but if we hadn’t started treatment I wouldn’t have lived more than two to three months.”
Greg looked up from his computer with a quizzical look and said, “Two to three months? You weren’t going to last two to three weeks.” Some things are best learned after the fact.
My euphoria did not survive much longer. After my third round of chemotherapy the cumulative effects of treatment became manifest. The fatigue was oppressive and ever present. No matter how much I slept, I always felt tired. I would go to the gym and try to exercise, but if my heart went over 100 bpm I worried that I would pass out and drop the barbell on my head. Two flights of stairs looked like Mount Everest. My fingers and toes became numb from the vincristine. I had a constant metal taste in my mouth and almost no ability to perceive the taste of food. I stopped drinking alcohol during chemotherapy, though the truth is I couldn’t discriminate Cabernet from Gatorade. Food had no taste, and I ate only because it was time to do so. I certainly had no appetite. I had the sex drive of the palace eunuch. It seemed that all of the sensual pleasures of life were gone. Worst of all, I feared that I would never ever feel well again, even though the chemotherapy nurses assured me that it would pass.
I tried to work a full schedule after taking a few days off after each session of chemotherapy. I normally keep health issues private (though these manuscripts would beg otherwise), but my patients knew something was up when I went bald and lost 25 pounds. Coupled with my office staff aggressively screening for anybody who appeared even remotely contagious, my secret was out. My patients were wonderful. Everyone wanted to hug and pray over me because this is Texas and that’s what we do. It was hard to get through clinic because everyone wanted to talk about my problem instead of theirs. Work remained a refuge, but in retrospect I should have cut back on my hours. I was completely spent at the end of each day.
In December I developed recurring fever, and the night sweats returned. I would go to the ER or to see Greg. The Methodist ER staff was wonderful with their oncology protocol. As soon as I hit the door, usually in the middle of the night or early morning, I would get my IV, blood cultures, lab studies, chest x-ray, and my first dose of antibiotics. The professionalism and attention to detail of the ER staff was reassuring. The workup was always negative. I would feel better for a few days after the antibiotics, and then repeat the sequence a week later. I secretly feared that despite the excellent CT scan, the lymphoma was making a comeback against chemotherapy.
|My CT scan from Sept. 29, 2013, showing my mass and the lymphadenopathy from lymphoma.|
|My CT scan from Dec. 6, 2013, after two rounds of CHOP-R chemotherapy. Arrows point to the mass.|
With negative cultures and a negative chest x-ray, the most likely diagnosis was viral illness. That’s how I treated it, even though I was feeling worse. The day after Christmas I went to bed even earlier than usual, telling myself I would call Greg in the morning because I just felt awful. I would never make the call. At 3 a.m. I awoke in a drenching sweat with a searing headache. I slipped out of bed so as not to wake my wife, Merrill. It is difficult to remember all the details after that. I remember being in the kitchen and feeling very ill. Somehow, I made it to the garage, getting my bag out of the car. I don't know how I got there or how I got my car keys. I made it to the couch and put my pulse oximeter on my finger. It read 66 percent. My first reaction was, “Crap, this thing is broken.” I moved it from finger to finger to finger. The results were the same. My saturation was 66 percent, my heart rate was 120, and if I coughed and breathed deeply I could get my saturation all the way up to 70 percent. The pulse oximeter wasn’t broken, I was. I tried to consider my options, but I was not thinking clearly. I briefly considered the idea of Merrill driving me to the hospital, but I realized I might not be conscious much longer. I tried to call Merrill, but I didn't have enough wind to shout and wake her. On the third try I summoned all my breath, shouted, and she heard me.
“Call 911,” I told her.
“Why?” she asked.
“Because I can’t breathe.” Merrill sprang into action. Someone would later ask me if she “was freaking out.” The answer is not once, not ever. She called 911, threw her clothes on, and ran out to flag down the ambulance. I sat on the couch and wondered if this was the day I was going to die. I felt surprisingly calm, maybe from the intoxication of the hypoxia, maybe because lymphoma forced me to ponder my mortality for the previous weeks. I have had a great life. My faith tells me that I will die and go to a better place. If I have anxiety, it is about the possibility of being left a pulmonary cripple. We all die, but please, Lord, don’t leave me an invalid.
EMS arrived quickly. I would remember a strange moment where they held the oxygen mask above my face with me waiting for them to apply it. Finally, I said, “I am ready for that when you are.” With 100-percent oxygen my saturation quickly increased to 92 percent and my headache melted away. Better yet, the fog lifted from my brain. We made the ride to the hospital to find ER swamped with flu patients and the hospital census at 100 percent. We waited four hours for a bed in the ICU. Greg saw me in the ICU and ER. My chest x-ray showed my lungs in white-out with an overwhelming pneumonia. He suspected pneumocystis pneumonia, but we would need to make sure that we weren’t missing something else.
Once in the medical ICU, I began to accumulate more doctors. Dr. Manica Isiguzo and her partners, Drs. Quresti, Puente-Cuellar, and McReynolds, were the critical care/pulmonologists caring for me. Dr. Richard Thorner and Dr. Richard Fetchik were my infectious disease doctors. Greg’s partner, Dr. Manuel Santiago, covered for him over the holiday as well. As my list of doctors got longer and longer, I remembered my old joke that the more doctors you have, the worse the prognosis. The nursing staff of the Methodist medical ICU were outstanding. They made me as comfortable as possible as I began to spend my first night in the hospital as a patient. Merrill insisted on staying in the ICU with me. Both the nurses and I tried to explain to her why that was a very bad idea. She wasn’t leaving. I tried to explain to her that there was nothing that she could do and both of us had been up since 3 a.m.
“You need to go home and get some sleep,” I told her.
“What if you get scared?” she replied.
“I’m not scared,” I answered, and I truly wasn’t.
“Well, what if I am?” In the chaos of the day I neglected to stop and think about what all this was doing to her. Her love for me was never more obvious than in that moment. I promised myself that if I survived, I would work every day to make her feel as loved as I did that night.
I had spent the day on my iPad reviewing the medical literature on oncology patients who develop respiratory failure, especially that due to pneumocystis. I then used my iPad to check my own lab results. My doctors had many patients, but that day I had only one. I was surprised to find out that patients with HIV have a higher survival rate from pneumocystis pneumonia then do oncology patients. As I read further, I began to understand why. HIV patients developed the symptoms gradually over time. Oncology patients, like me, develop a sudden respiratory illness with little prodrome. In retrospect, it seems like the diagnosis was obvious. However, during the course of my febrile episodes I saw four different doctors, all of them diligent in looking for a source. Despite all our modern technology, some diagnoses present only on their own schedule.
Both of us had a rough night. Every time I fell asleep, my saturation fell, and the nurses came in to rouse me. Merrill would try to drift back to sleep, and I would lie awake staring at the ceiling, then watch Merrill wrestle with the recliner, trying to find a comfortable position. The recliner got the best of it, one time almost pitching her out onto the floor.
When you have nothing to do but think, you recall unusual events. For some reason, I began to think about a young woman I cared for during my first military assignment in Germany. She was admitted to our ICU with varicella pneumonia, and my partners and I cared for her while she gradually deteriorated, despite everybody’s best efforts. We tried truly heroic measures, but she eventually died from overwhelming pulmonary failure after a prolonged course on the ventilator. I remember thinking how tragic that she died from chickenpox. Something affected her immune system, and she never survived. I wondered if that was going to be my path.
In the morning, my mother arrived, and Merrill finally agreed to go home and get some rest. My mother just moved to Texas from Chicago to avoid, as she puts it, “bad weather and bad government.” She also spent years caring for my father as his health deteriorated, sitting in hospitals just like she was now. It had been my hope that when she moved here we could care for her as she had cared for him. Now she was sitting in a hospital again, which just added to my distress.
“I never dreamed that you would have to sit in a hospital watching over me. I am so sorry things turned out this way,” I told her.
“There is no place I’d rather be,” she replied. Mothers always know the right things to say.
I was blessed with plenty of visitors while I was in the ICU. My partners, Jim Growney, Tim Orihel, and Arnold DeLeon, came by. My office manager, Marta Reyna, brought food and snacks, as did my running partner and travel companion, Dr. Bob Johnson. Friends from my military days came by, Dr. Bob Joyner, just reinforcing my idea that those ties formed during military service are some of the strongest. My son, Nathaniel, and his wife, Lindsay, sat with me and brought reading material. I communicated with my daughter, Lauren, in Germany and her family via my iPad. Their visits brightened my days and kept me from staring at the ceiling too long.
Merrill, of course, was a constant presence, leaving only when my mother was there, the only one she trusted to monitor me in her absence. She became upset with the quality of the hospital food and would call the nurses in to look at my dinner tray, something they of course viewed daily. Merrill would voice her displeasure, and the nurses, ever diplomatic, would say, “I can understand why you feel that way.” Merrill finally got disgusted and just brought me food from Aldo’s, which I enjoyed even when critically ill. After I ate, I would read my lab results and my findings in the medical literature to her, which sometimes just increased her distress. All the culture results were negative. The only remaining possibility was pneumocystis, and that would require bronchoscopy for definitive diagnosis. Neither Dr. Fetchik nor Dr. Quresti thought that I would get through bronchoscopy without ending up on a ventilator. My iPad medical research already taught me that if you have pneumocystis pneumonia and you’re on a ventilator, the mortality rate is 90 percent. For the first time, I felt a sense of anxiety. Fortunately, they recommended that we stop all other antibiotics and start treatment with trimethoprim sulfa. Twenty-four hours later, my oxygen requirement decreased, and I slept through the night for the first time in weeks without a drenching sweat.
After five days of bed rest, I was well enough to leave the ICU and move to the rehab floor. I became friends with Thomas, my rehabilitation aid. He would come by several times a day and help me get up and walk so I could reach my goal of walking for six minutes without stopping and while keeping my oxygen saturation above 90 percent. On my first try, I made it 285 feet before I was gasping for breath and my saturation dropped to 85 percent. Each attempt was better, and after two days, I made the six-minute walk, though Thomas still had to give me a pass on a brief period when my saturation hit 89 percent. I could now go home. Greg gave me very strict instructions. I would do no activity more strenuous than walking at a 15-minute pace. I could lift light weights, but nothing heavy and nothing strenuous. Most importantly, he told me I would stay home and only at home for a month. If I were to come down with influenza, I would likely not survive. It would be a month of house arrest without the ankle bracelet, but it would be a step toward getting better.
Up next: The economics of serious illness