Monday, March 25, 2019

My New Augusta Nation Quest - Post 6 - "Freedom"

I'm getting closer to the technicolor of Augusta . . . 

Returning home after a traumatic hospital stay is a big deal. I’m trying to mentally shift focus and it’s more complicated than I thought it would be. My white blood cell count yesterday was 4 (which is good) and I have an appointment with my doctor tomorrow at 10:45am. My focus now is to break through and establish a new normal. I don’t want to be a patient any more, I want to live an everyday life, spend time with family and friends and play golf. There was a time when a 4 represented a good score on a two-shot hole and when 10:45am represented a tee time, and not a clinical exam time. I want my old life back. Seeing the lush green rolling hills of North Georgia and smelling pine needles would be the ultimate shock treatment to allow me to hit the reset button and get that done. It would certainly be a stark contrast to the muted grays and browns of a hospital environment and a step up from smelling bleach all day.

Having new DNA and a new lease on life is like being born again. In fact, the nurses at the hospital call your transplant day your new birthday. They say that you should appreciate the little things in life and it is both true and a cliché. Sitting on my back deck watching the sun rise and listening to the birds chirping is more satisfying that just about anything in the world these days. I’ve also allowed myself the permission once again to reimagine that by mid-summer I can again experience the sound of golf shoes crunching on gravel, of clubs clicking against each other with a bag on my back, and to listen for the magical soft sound the ball makes when it falls into the hole and then rattles around. I'm dreaming of hearing and experiencing sounds that I previously wouldn't haven given a second thought to. I can't wait to hear the snap and crackle of Velcro when I unfasten my golf glove again for the first time. I also hope to one day return to links golf and listen to its distinctive sounds: the inevitable wind blowing through the long fescue in the dunes, the cawing of seagulls floating overhead, the flag fighting to stay upright in a stiff breeze and the sound of distant waves.

In the end, the lessons from my near-death experience aren’t that complicated.  Live the golden rule. Do unto others as you would have them do unto you. Be nice to people. Give and you shall receive. Watch It’s a Wonderful Life and it’s all there; friends and family are far more important than power or money.

Being back home has been a liberating experience especially as my doctor lifts some restrictions. I have begun to ease back into normal routines like showering without permission, cooking, reading the newspaper without needing to wear gloves, and staring idly into the fireplace for hours on end. The temptation to hit a few balls here and there is also quite compelling. As I mentioned in a previous post I still have a PICC line protruding from my arm so that I can give and receive blood easily. PICC lines are not conducive to physical activity, including golf. Compared to tennis or running, though, golf isn’t that physically taxing and I don’t see how it could interfere with my treatment. They told me no contact sports when I was discharged, and golf isn’t a contact sport. How harmful can it be to hit a few chip shots in the backyard?


I ended up having to go to the emergency room one sun-splashed Sunday morning in the late fall after I developed a blood clot in the same arm that my PICC line is in. I’m not saying there is a correlation between hitting balls and the blood clot. In fact, I’m going to exercise my Fifth Amendment right against self-incrimination because technically there is no proof that I actually hit balls. The blood clot could have developed for other reasons. And besides, the medical literature offers conflicting research on the impacts of the golf swing, peripherally inserted central catheters and blood clots. Most studies don’t prove a correlation, at least when the golfer is just hitting wedges. If I had snuck in a couple of drives, well that may be a different story and potentially could have caused some damage.

In any event, the penalty for (allegedly) golfing with a PICC line is a self-administered needle to the stomach every day with an anticlotting drug. The penalty doesn’t seem to fit the innocent nature of the crime. A two-shot penalty would have been sufficient, but 120 days (and counting) of shots to the abdomen seems a bit much for such a small infraction of the rules.

“The wife” says I like to complain and I probably do. Although I count my blessings every day, after half a year at home you do start to go stir crazy. While I didn’t have to wear an ankle bracelet like Bernie Madoff or Dominique Strauss-Kahn did during their house arrests, the injustice of the situation has begun to weigh on me mentally the more time progresses.

To add insult to injury I have to follow a restricted diet (called Neutropenic) because my body can’t ward off infection yet. Among the foods in the bad category are fast foods, including In-N-Out Burger, Jimmy Johns and Jersey Mike’s. A sub sandwich, or “cold cuts,” as the doctors describe them with a menacing tone, could kill me because the meats sit out all day and grow bacteria on them. They warn you off eating an Italian Hoagie as if your finger were on the pin of a hand grenade. Kill joys.  I also can’t have sushi. Blueberries, raspberries, and strawberries are to be avoided like kryptonite. But the indignities get far worse. The greatest indignity of all is that I can’t eat unpasteurized cheese. This includes blue cheese, brie, and Gorgonzola. The ultimate horror is that I can’t eat fresh Pecorino Romano or Permagiano-Reggiano. I get the sense that transplants are easier for people of Anglo-Saxon descent; telling someone of Italian heritage they can’t eat fresh grated cheese is the ultimate indignity. At least I suffer in good company; my Jewish brethren also suffer because having a bagel with lox is also forbidden. 

At my stage in this nightmare leukemia journey there is no sense of a permanent peace. Although my prognosis to date has been good, unfortunately, the disease can come back, so there is always a small voice in the back of my mind that I can't silence. For now, I have to block all that negativity out because we’re gearing up to go to the Masters. I hope I have enough stamina to walk the grounds a few hours a day. After going so long without exercise I am in a weakened state, although I am looking forward to cautiously walking up and down the steep hills and breaking a sweat for the first time in almost a year.

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.

Friday, March 01, 2019

My New Augusta National Quest - Post 4 - "Lucky"

Despite my current dietary limitations, I am longing to eat one of these

I responded well to the first and second rounds of chemo and the next step toward getting the disease in remission was to find a donor for a bone marrow transplant. Even though the chemotherapy completely wipes out the source of the problem, which is rogue white blood cells, given that I had the FLT-3 mutation, the incidence of recurrence is unfortunately high, and replacing the body’s bone marrow is the preferred course of action. The reason the doctors want to replace the bone marrow is because that is how the body generates blood cells, and the theory is to cut off the problem at its source. In what my doctor rightly describes as voodoo medicine, treatment has advanced to the point where they can give you a shot that tells your body to replace your own bone marrow with that of your donors. How it works is beyond description for a lay person. Lending money and buying stocks is God’s work? Not exactly. This voodoo medicine is God’s work.

For some people finding a donor is a stressful ordeal. The best case is to have the donor be a family member. For those that can't find a blood relative donor, they try via a pool of donors. The donor base statistically favors those of Western European descent. As one of Italian-Irish lineage the transplant specialist felt I would have a good chance of finding a match. Those in other ethnic groups apparently haven’t built up a huge base of donors so it is more of a challenge and potentially life threatening. It turns out that I didn't need to go to the donor pool because I was very lucky: my younger brother was a perfect match as a donor. The transplant team looks to match ten different criteria and the closer you can get to all of them, the better the chances that the transplant will be successful. My bro was 10 out of 10, which is better than birding the 12th hole at Augusta National!

My actual transplant was thankfully a non-event, even anti-climactic. I got an injection and a bag of the life-saving marrow and that was it, the entire procedure completed in less than two hours. Mental note: Osso busso is off the menu from now on.

Transplant complete, now the fight against the disease shifted to the mental. Although the transplant itself was relatively non-invasive, I had to remain in isolation for between 20 and 30 days. Isolation, as in restricted to your hospital room, which has been completely sterilized and scrubbed down. Anyone entering my room had to put on a gown and gloves to keep the environment germ free because my immune system didn’t exist. An infection or virus could kill me. You also have to take an impressive list of medications day and night, and take fluids through IV, including blood transfusions as needed. In the long list of complaints a leukemia patient can have, having to just sit around in a locked hospital room ranks relatively low, although it requires the patience of a saint, something I’m not naturally suited for. The one small act that saved my sanity is that the doctors allow you out of the room, but not off the floor, for a brief time after 10pm and before 6am when the activity level in the hallways has decreased.

On May 1st, I was leading a normal life; four months later I was a vampire: locked in a room 23 1/2 hours a day, consuming blood and coming out for only 30 minutes in the middle of the night. Not that I’m complaining, because the efforts by the medical team are astonishing and I’m above ground with much to be grateful for.

With nothing but free time I got to watch the PGA championship from beginning to end, just as I did in May with the Players Championship. I watched every single shot of the tournament and the Golf Channel’s coverage before and after the rounds. To state the obvious, your choices of entertainment laying in a hospital gurney are limited and it was nice to imagine being out in the sunshine, walking on lush fairways with the wind blowing, rather than smelling cleaning solvents, eating hospital food and watching my hair fall out.

Since the golf bug bit me decades ago I have always been obsessed with the game. To me it's not a recreational activity I pursue in my leisure time, but instead it is a way of life. I love the beauty and serenity of being out in nature chasing around a little white ball. I love the camaraderie, the friendships, the etiquette, the challenge, and the self-knowledge you get from embracing golf. Laying in my hospital bed for extended periods of time breathing recycled air really made me lust to get out in nature again. Honestly, just being able to take a walk in the park or to feel the sun beating down on me would be enough. Golf would be a huge bonus.

Being cooped up for such a long time gave me a lot of time to think. And time to dream. Part of the way I managed to get through the first part of this ordeal was to dream about getting out on a golf course once again. I’m still hopeful that I can get to the point where I can make the trek to Augusta next month to watch the Masters. I have to remain patient and take it one day at a time and to remember that I have a lot to be grateful for.

I would remain in isolation in the same room for twenty straight days, although I was lucky because I was on the short end of the range. I’m not sure I could have endured another 10 days. I used to think that the greatest words in the English language were, “Mr. Sabino, you’re on the tee,” while in a special place like Cypress Point or Royal Dornoch. What a fool I was. The greatest words in any language are “Mr. Sabino, you’re discharged.” Finally, I was free to go home and was able to walk out of the hospital without assistance.

And I was one step closer to getting back to Augusta and to playing the game again.