Friday, March 15, 2019

My New Augusta National Quest - Post 5 - "House Arrest"

#13 looking back   
 Is there better therapy in the world than visiting Augusta with the shrubs in bloom?

I was discharged with a decent short-term prognosis just after Labor Day. The drill for the foreseeable future was to remain at home in an environment that is as sterile as possible, with no visitors. Because of the chemotherapy and transplant my immune system was still non-existent. I survived by taking 20 or so pills a day, having a home nurse come twice a week, and visiting the doctor at the hospital once a week. I was sent home with a peripherally inserted central catheter (PICC line) in my right arm so that I could get IV medication and so that the nurse didn’t have to prick my hand or find a new vein every time she needed blood.

A PICC line is one of the unnoted miracles of modern medicine. It allows patients who would otherwise be hospital-bound to go home and get their medication there. Among its disadvantages is that it inhibits you from swinging a golf club, not that I had much energy to do so anyway. Transplants take a long time to work and one of their primary drawbacks is that you have extreme fatigue almost all the time because your body has to convert over from your own DNA to that of your donor. The body has roughly 37 trillion cells, so that takes a lot of energy. One of my doctors said that if I committed a crime the police could convict my brother based on DNA evidence, because post-transplant his DNA is my DNA. The other voodoo aspect of the transplant is that my blood type will change from A positive to B positive once it is complete.

Despite the restrictions, it is obviously far better to be home than in a hospital. In addition to my visit to intensive care there were other low points of my stay. “The wife” and I agreed that one was when we were sitting in the hospital room on a murky afternoon watching reruns of the New $10,000 Pyramid on TV. Daytime TV is a vast wasteland and this felt like a nadir if there ever was one. The other low point was when my white blood cell counts began to rise. By design, some of the chemotherapy you are given obliterates your white blood cells and brings their count down to zero or near zero. This is a good thing because these were the bad cells that caused the leukemia. Your body eventually re-generates new white blood cells and I was given a drug called Neupogen, which helps stimulate their growth.

Bone marrow is created primarily in the big bones of your lower back and in your thighs. Once the Neupogen starts to kick in and your white blood cells start to grow again it brings on pain with such an intensity that you can't function. Did you ever hit yourself in the ankle or shin with a wedge when you were walking off a green or coming out of a bunker? Intensely painful, right? The pain of your bone marrow generating white blood cells anew is like that pain times one thousand, and it is one that doesn’t last a minute, but hours. The onset of the pain caused me to curl up in bed and sob, the pain of such intensity that I would have preferred death during those moments.

Enter the miracle pain drugs: opioids. Prior to my cancer, the strongest medicine I would ever take was Advil. I am not a pill popper and my philosophy is that it is better to tough it out, that most pains were transient, and the side effects of most medications usually don’t outweigh the benefits. Not so in this instance. I started with a morphine pump, another miracle of modern medicine. To kill the pain I was given a bag of morphine (an opioid narcotic) attached via an IV tube to a release button that controlled its flow. When you experience pain, you simply push the button and the morphine goes directly into your bloodstream through the IV. As Martha Stewart says, “it’s a good thing,” and the fact that the pain goes away immediately is far better than any craft project or fancy cupcake icing design she ever did.

Opioids can be bad and can be addictive. We all know that now, and it’s easy to judge people who become addicted to them. All I can say is that in my hour of greatest need when taking my next breath was a struggle, they provide needed relief and helped me get through to see the next sunrise.

It turns out that one of the reasons Secretariat was such a successful horse was that his heart was abnormally large. During the depths of my hospital troubles I was saved emotionally not by a doctor, intern, fellow, nurse practitioner, physician’s assistant or registered nurse, but by a nurse’s aide. Alana was her name, an angel from Trinidad. Her job was to take vital signs in the middle of the night, to change sheets and to perform other support functions for the broader medical team. Aside from getting world-class treatment, a big part of fighting through this disease is emotional. Keeping a positive attitude, which is easy to preach, is far more difficult to put into practice when you’re attached to IVs around the clock and it's two in the morning and you're lying awake in the dark. Alana understood that staying connected to reality and not losing sight of what you are fighting for are supremely important. She has the most positive attitude of anyone in the City of Brotherly Love, and it was infectious. Simple things like calling me "sweetie" or telling me I looked great when I knew I was a mess made a big difference. Before I was taken to intensive care she sat next to my bed and held my hand, offering positive encouragement and her prayers.

The University of Pennsylvania Hospital has a rich heritage. It was the first medical school in the country, founded in 1765 by Benjamin Franklin. It has countless PhD’s, distinguished professors and medical prize winners. In my book, Alana is the Secretariat of the University of Pennsylvania Hospital, and one of the most tremendous human beings I ever met. May god bless her loving soul.

My last visit to the doctor brought very good news. She said the “the wife” and I could go to the Masters, with some limitations. I can’t fly. Technically I can, but since my immune system remains weak I’d have to wear a respirator and wipe down the area around me on the flying germ factory airplane. Boarding a plane dressed like a fireman and behaving like Felix Unger aren’t my cup of tea, so we’re happily going to make the long drive. We’re going to take it slow on the way there and the way back, doing a tour of Southern cities so as to not stress ourselves out trying to drive too much in one day.

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