Tuesday, October 7, 2014

Physician As Patient Part VI: Recovery

By Jay Ellis, MD

Editor's Note: This is the sixth 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 parts I, II, III, IV, and V.

Dr. Greg Guzley discusses my treatment plan. I credit him with saving my life.
After I left the hospital, I returned home a feeble, debilitated man. For the first time in my life I had to face the possibility that I might be permanently impaired. I also worried that I might not be strong enough to tolerate any more chemotherapy. I had already missed one session, and Dr. Greg Guzley told me it would be at least a week before he would even think about letting me attempt another treatment. I could not climb a flight of stairs. I could barely make it around the backyard. Greg gave me specific instructions before I left the hospital. I would do nothing more strenuous than walk a mile on level ground at no more than a 15-minute-mile pace. At that moment, 15-minute miles seemed the equivalent of running a marathon. I would have to stay home. If I were to go out in a crowd and get the flu, I would not survive the event.

My life assumed a very dull existence. I would get up in the morning and read three newspapers. I would go and try to take my walk hoping to see signs of improvement. Greg also allowed me to lift with light weights, and I used my wife Merrill’s 12-pound dumbbells, which in my impaired condition felt like the Olympic weightlifter workout. That would take me to lunch time, and I had the rest of the day to kill. It was so boring. It truly was house arrest without the ankle bracelet.

On my first attempt at walking away from the house, Merrill needed to run some errands, and I went on my own. She gave me strict instructions to be careful, but I decided I would get out there and push it. After all, no pain, no gain, right? I took my pulse oximeter with me and found that if I walked a steady, measured pace I could keep my saturation above 90 percent, but just barely. I made it six-tenths of a mile and turned to go up a slight hill that I had run hundreds of times before. After about 10 yards, my oxygen saturation hit 85 percent, my heart rate was 120, and I was feeling very lightheaded. I quickly bent over and put my head between my legs. I have no idea what the traffic passing by thought of this strange posture, but after a few minutes I rallied enough energy to turn for home. I walked 1.2 miles, it took me over 30 minutes, and I was exhausted. Merrill returned home to see me collapsed on the couch. She didn’t say a word, but she never let me walk alone again.

CATCHING MY BREATH

It was humbling to walk with Merrill. She has always been an avid walker, moving at a brisk pace that challenges most people. In my recovering state I could not keep up with her. I would put my pulse oximeter on and watch as I struggled to keep my heart rate under 120 and my saturation greater than 90 percent. If we walked up any sort of incline, I would have to stop and catch my breath — or just pass out, which did not seem as appealing. I let her borrow the pulse oximeter for a while just to check her heart rate and oxygen saturation. The normality of her readings was a stark contrast to my physiologic infirmity. It only reaffirmed how impaired the pneumocystis pneumonia left me.

These are just a few of the nurses from Cancer Care Centers of
South Texas who guided me through my chemotherapy.
Despite a difficult start, I did see signs of progress. We monitored our pace with a free app on my iPhone, and my pace per mile went from over 20 minutes a mile to under 18 minutes. I was hoping this would be enough to let me resume my chemotherapy. When I saw Greg for my next appointment, he concurred that I could start treatment again. It was a great relief, at least until the next day. In my debilitated state the chemotherapy hit even harder. I couldn't even go for a walk. I did rally, and Merrill and I continued our daily walks. I tried to do light chores around the house to make myself feel useful. I went out to clean the pool, and when I came in I realized that my wedding band had fallen off my skinny, emaciated finger. I searched the pool, the yard, and the filter equipment without success. I was heartsick, but Merrill told me to stop fretting.

The monotony of my existence was broken by good friends. Ed Rashid came by and brought me some books and movies to watch, as well as a delicious cake. Friends sent notes, emailed, and called. Merrill stood guard at the front door, and anyone with the appearance of illness was given a polite shove toward the street. I made vain attempts to escape. I told her I thought I might go to the gym, and she responded, “How many sick people use that exercise equipment?” I thought we might go to church and sit off by ourselves, and she reminded me how many people we heard cough when we watched services online. She was an effective and diplomatic warden.

I decided I would use my month of enforced confinement as an opportunity for self-improvement and did some online continuing medical education. I continued to read three newspapers every day, and I considered myself the world’s expert on current events for the month of January 2014. Each day seemed to get a little better. My ability to lift weights improved, and I was even able to start doing push-ups again. I would take great pride in my little victories. I began to have some hope that I would recover from this near-life-ending event.

Just before my fifth chemotherapy, I went for my fourth CT scan. After the study Dr. Michael Lane was again good enough to review the results with me. My lungs were dramatically improved, but even more heartening was the effect of chemotherapy. The abdominal mass, the lymphadenopathy, even the splenic changes were undetectable. The results of the chemotherapy after just four treatments were dramatic. I was euphoric.

IMPROVEMENT WAS POSSIBLE

Merrill and I began to push my daily walks even farther. By the end of January, we were able to walk 3.5 miles at just under 16 minutes a mile. I felt like Roger Bannister breaking the four-minute mile. I was certainly exhausted after I performed this otherwise mundane feat, but it gave me hope that greater improvement was possible.

I returned for my fifth chemotherapy and got even better news. My hemoglobin, which had been under nine for most of the course of my illness, was now over 11. No wonder I felt better. Greg allowed me to return to work half-time. It was great to be back in the office and working, even on a reduced schedule. I was able to start going to Spurs games again and to go out to dinner. Prior to this Merrill and my mother were my primary connections to the outside world. It was great to feel part of society again.

I finished my sixth chemotherapy and began counting the days until the ultimate test, my PET scan. I received a list of preoperative instructions for the PET scan. It rivaled the user’s manual for your car. No heavy exercise for 24-48 hours; no sweeteners or artificial sweeteners for 24 hours; high-protein, low-carb meal the night before. No eating for eight hours prior to the procedure. I showed up on the day of the procedure and received my injection from the steel container containing the radionuclide, while sitting inside the metal-walled room. I felt like a toxic fund cleanup site. The scan takes 20 to 30 minutes, but by this time I was so used to the CT scanner that I fell asleep during the procedure. I was hoping to be able to review the results as I had with previous studies, but didn’t get the opportunity this time. I promptly went home and pulled the results up on my computer. Me reading a PET scan is second only to me trying to read Sanskrit. I did know that bright activity outside my kidneys was not good. There was only one tiny spot outside my kidneys that lit up, and it was in my lung. I was confident that this was nothing more than residual effects of my pneumonia, and it was just a matter of time until Greg called me to tell me that I was in remission. It seemed miraculous.

Unfortunately, when Greg called it wasn’t quite what I expected. He did confirm that there was a spot in my lung. However, there would be no way to determine whether this was lymphoma or residual pneumonia without a biopsy. I would need CT scan No. 6 and a needle-directed biopsy to answer the question. OK, I can do this. I believed it to be merely a formality, but if it would save me from more chemotherapy I would let them stick a needle between my eyes. Dr. Beatriz Escobar did my biopsy, and it went smoothly. I began waiting for the results. I would log into the Meditech system and check my results each day waiting to see the report. It took days, but it seemed like eternity. Greg allowed me to go back to work full time since I felt so well. I was even beginning to run again, though anyone watching me would have a hard time calling it running, considering my pace was hardly better than 12 minutes a mile.

Finally, at the end of a Wednesday, just as I finished my cases, Greg called. The results were in. There was no lymphoma on the biopsy, and I was in remission. As Greg would say later, I wasn’t cured, but I had made the first cut. I immediately called Merrill and my Mom to share the news. I tried to stand up, but I couldn’t. My entire body went limp. I believed I was handling all this pressure so well. I then realized that once I had the definite answer, a wave of relief swept over me, and I was free from the stress of not knowing. The subconscious burden had sapped my energy, and I was now exhausted. I sat in the doctor’s lounge at MSTH for 15 minutes surprisingly all alone, until I was finally able to move. I went home and hugged Merrill.
Race day, May 19, 2014. To be so close to death and
disability just four months ago and to feel so well
today feels like a miracle. Courtesy photos

RUNNING A RELAY

I met with Greg a week later, and we discussed my new plan. There was a new protocol that might increase my chances of survival by 50 percent. I would start on rituximab every other month for two years. If there was no recurrence, I would be done. This seemed like a piece of cake. Get one drug every other month instead of five drugs every three weeks? I can do that standing on my head.

My hemoglobin was now over 12, and I felt better than I had in months. My running partner Bob Johnson and I decided to see if I could run three miles. If I could, I would run an entire leg of the Beach to Bay Relay, an annual event I have done with five of my friends each year for the past 18 years. I had signed us up in October, but didn’t know if I would be alive on race day and had little hope that I would be running. If things went well, I hoped I could come to the race and cheer. I started running with Bob, but it did not begin well. I would run for 100 paces, walk for 100 paces, gasping for breath. Slowly but surely we were able to improve the pace. OK, we improved my pace. Bob, as ex-triathlete, wasn’t even winded.

On May 19, 2014, 136 days after I left the hospital and supplemental oxygen and 89 days after my last chemotherapy, Bob stood next to me as I lined up for the start of the race. It was an unbelievably cool day for this race. It wasn’t over 70 degrees, and I can't remember better race day weather. If there was ever a day when I was going to be able to make it, this would be the day. All I wanted to do was finish without walking. Despite the cool weather, there was a 30-mile-per-hour head wind blowing sand in my face. Actually, it was a blessing. It kept me from thinking about how much my legs hurt. I finished my leg, 3.5 miles, in just over 37 minutes. It seemed like a miracle. After being so sick I was back running again, albeit slowly. In January, I thought I would never run again. In October and again in December, I wasn’t sure that I was going to live. Now I was doing both.


Up next: What I learned

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