Thursday, July 04, 2019

Returning to Golf!

It has been a while since I provided an update, so the 4th of July seems like a good time. First, thank you all for your kind words of encouragement. All-in-all I am doing well and am still in remission. Every day is a blessing to be enjoyed.

Peddie 
My home course, 7th green, twilight, July 3, 2019

One of my goals is to play golf again as soon as practical and I’m giving it a real go. One big side effect of a bone marrow transplant is fatigue, and in my case, it is sometimes acute because my red blood cell count keeps dropping, and will do so until my blood type changes to my brothers. As a result, I have to time my forays into golf with precision so that I pursue the game when I have maximum energy. Since I need a blood transfusion about every ten days I have to calibrate my golf escapades with an appropriate hemoglobin count, which limits me to three potential days a week.

I have approached the task with my usual gusto, primarily hitting balls and trying to get back my swing after such a long hiatus. I lost a lot of strength laying around for a year so I have to adjust to the ball traveling a shorter distance. As if I don’t have enough going on I also thought it was a good time to take some lessons to at least make sure I’m practicing the right things. Oy Vey, I forgot how hard it is to make changes, but I think it was the right decision because I plan on playing golf for a long time.

 I also have a side effect called chronic GVHD which prevents me from being in the sun, so I am limited to cloudy or rainy days, or playing at dusk or twilight. The great news is I’ve gotten to play, sometimes walking three or four holes, sometimes taking a cart for nine holes. And it feels fantastic to be playing again. I am fighting this insidious disease so hard for family, friends, and myself, and having something to strive for and dream about helps beyond measure. There is still nothing like hitting a crisp iron shot from the fairway on a beeline to the flag, or hearing the ball drop to the bottom of the cup on a thirty-foot twisting putt! As is my nature I sometimes push too far. I went out one Sunday at sunset with my red counts low and had to lay down on the fairway between shots to catch my breath. “The wife” accuses me of sneaking out and says that I’m insane and what I’m doing is too much, and I’m sure my doctor would not approve, but I’m thrilled to have a do over, and it beats laying in a hospital bed.

Mine is an interesting life right now, with exaggerated highs and lows. When I’m in a down cycle I can only muster enough energy to lay on the couch and speak at the same volume Marlon Brando did in The Godfather. Hitting bottom is never fun. One slow afternoon I was almost to the point of desperation from boredom and I began dreaming of going to a Michael’s Store to pick up some materials to start a craft project – then luckily, I woke up in a cold sweat.

I am planning a special trip to Boston to meet some friends in August and hopefully to play a little golf (hoping for heavy cloud cover) and to get a dispensation to ride in a golf cart for courses that otherwise don’t allow it. My doctor also has a couple more tricks up her sleeve for stubborn cases and she will soon give me a wonder drug (Rituxin) that should accelerate my blood type changeover and continue my path to recovery and sustained high blood counts.

As the tee shirt says #lifeisgood.

Wednesday, April 24, 2019

The 2019 Masters and Update

First, thank you for all the nice comments, tweets, emails and messages, I appreciate them. I made it back to Augusta National. A little fatter, more haggard and fatigued than normal, but none of that matters, it was a dream come true again! Praise the lord for all he has blessed me with.

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The fat boy returns to Amen Corner

We got to follow Tiger for a couple of holes, although it is so difficult to do with the crowds following him like never before. 

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Tiger practicing on the 17th green

It was great to catch up with friends from all over the world and to see the perfect property again. While the wife was off buying stuff in the best retail merchandising operation in the world I snuck in a pimento cheese and egg salad sandwich. Although I'm only allowed to technically eat food that's been freshly prepared within the hour, I correctly bet that Augusta's food operation was safe and they wouldn't poison me. 

The highlight of the trip was that "the wife" got to stand a few feet from her boy on his nemesis hole. It doesn't matter than his game is off the boil because he's "so cute."

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Spieth on the 12th

I got spectacular news yesterday when my transplant nurse removed my PICC line after being in my arm for 50 weeks, and gave me the all clear to play again. I already have a blister on my finger from hitting too many balls this morning! Looking forward to getting out a playing a few holes (in a golf cart for now) over the coming weeks.

Friday, April 05, 2019

My New Augusta National Quest - Post 7 - "The Remission Road Trip!"


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This home bound golf fan has studied the 2019 Masters program from beginning to end

I have a very gracious friend who lives in California who serves as a gallery guard at the Masters and he gives me his tickets every year for the practice rounds. “The wife” and I are setting out on our road trip to Augusta tomorrow to attend the practice rounds. Technically she doesn’t even call it the Masters, she says “we’re going to see Spieth.” She has a minor obsession with the young man and was heartbroken to learn that he got married last year.

So, even though he has been playing poorly of later we will be following Spieth, which I’m perfectly happy to do. Just being on the hallowed grounds is a privilege. I expect we'll be sitting in grandstands far more this year than in prior visits, but I’m thrilled to be there at all.

One unintended consequence of having cancer is that you get a lot of mail. Over the last ten months I’ve gotten at least a half dozen bills, statements, disclosures or explanation of benefits documents per week. Stacked end to end, all the papers related to my treatment measure over 6 inches in height. Contained within that half a foot of paper is $1.4 million of bills related to medical treatment, the cumulative cost so far. The $1.4 million includes 54 days spent in the hospital, 22 bags of red blood received through transfusions, 36 outpatient visits to the hospital, two emergency room visits, 72 visits from my home nurse and 5,230 pills. Sound like a burden? Truth is it’s a blessing. I’m alive and feeling good.

And my cancer is in remission.


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I will be following Karen around the course as she follows her boy

How do I know all the statistics above with such precision? “The wife, Karen.” We all deal with stress in different ways. I personally just let go and turn myself over to the care of the professional and assume that they are skilled in their ways and that god has a plan for me, and that worrying over every little thing isn’t really going to change the outcome. “The wife” is the opposite. She kept notebooks throughout my hospital stay writing down the name of everybody who came into the room. She grilled every doctor, nurse, and pharmacist and had them explain every single thing and every side effect. She keeps spreadsheets of all the pills I have taken. Not only can she tell you that I’ve taken 5,230 pills, she can also tell you the specific dosage and what time of day I took them, bless her soul.

I am also enrolled in an FDA trail for a drug called Gilteritinib that has shown promising results in keeping my particular type of leukemia at bay. Modern medicine is full of miracles. And miracles don’t come cheap. The list price of Gilteritinib is $360,000 per year and I am beyond blessed that I don’t have to pay out of pocket. While disruptive tech companies that let you order pizza without getting off your couch or to hail a taxi faster get a lion’s share of the press attention, recent advances in medicine have been even more dramatic. If I had gotten this dreaded disease 25 years ago my outcome likely would have been very different. And advances coming in the next regarding 25 years in areas like immunotherapy, genomics and allogenic cell therapy promise even better, more advanced medicine, something I think is important to keep in perspective when skeptics tell you have bad everything is. Truth is, it's a fabulous time to be alive.

They say there are no atheists in foxholes. Well, the same is true for those being treated on an oncology floor in the hospital (or in the case of Penn, the dozens of floors). There is a lot of faith and praying golf on. It is by far the most egalitarian environment I have been in. There are no Republicans or Democrats, you don’t notice or care about someone’s skin color, ethnicity or background. You just have empathy for your fellow sufferers and admiration and trust in the people caring for you. Can cancer ever be a good thing? I don’t really think so, but it has changed my outlook on life and given me the perspective to see things very differently now.

I don’t know if technically you can get PTSD from a long and traumatic hospital stay, but sometimes I do feel traumatized. My self-prescribed treatment for curing it is to visit the Augusta National Golf Club and to soak up the Masters with “the wife.” We’ll keep you posted along the way. Karen has her notebooks and spreadsheet at the ready. I’m sure I’ll be able to tell you how many miles we drove to and from Augusta and how many steps we took while on the property!

Monday, March 25, 2019

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

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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?

Moron.

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"

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 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"

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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.

Friday, February 15, 2019

My New Augusta National Quest - Post 3 - "Nadir"

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Hope springs eternal, and I'm hopeful to see this in person in April

Entering the alien world of cancer treatments was an eye-opening experience at all levels. I have been a long-time reader of the works of Atul Gawande, an Oxford and Stanford educated surgeon and Harvard Medical School professor who writes for the New Yorker. He espouses the importance of following a defined protocol and of a seemingly trivial thing: using checklists. He espouses it for the same reason Sully Sullenberger and Jeff Skiles immediately went to their emergency checklist after hitting a flock of birds after taking off from LaGuardia Airport. Because they work.

Maybe Bryson DeChambeau is on to something with his scientific and methodical approach to the game. He is continually rising on the money list with his checklist approach to golf.

One of the reasons I had great care around the clock is that everyone was reading from the same playbook and religiously followed their procedures and checklists. Even if each individual practitioner is of the highest caliber, the system is only as good as its weakest link. The way they all worked together on an integrated basis and handed off seamlessly from shift-to-shift is because they follow their protocol. This was an eye-opening lesson for me.

Although I was in a fog, during those first few hospital days I noticed that the doctors kept saying that I would hit “nadir” on about day 14 of treatment. I wasn’t exactly sure what nadir meant since this isn't the kind of word we typically use in Jersey. My closest prior association with the word Nadir is the activist Ralph. I ended up getting a master class in the meaning of nadir during my initial hospital stay. In retrospect, the reason that use such a fancy term is so they don’t scare the hell out of you. Nadir means hitting rock bottom. Everyone at the hospital works really hard to keep the environment upbeat. Using phrases like “rock bottom” or “crashing” don’t fit the construct.

I also learned during my trial by fire that it’s not the disease that necessarily kills you, sometimes it’s the treatment or side effects. My initial induction chemo included three different drugs and their side effects were far ranging. The evil nemesis that got me is a dastardly condition called mucositis. The chemicals poisons you are given are designed to wipe out a large part of your existing cells but they don’t perfectly discriminate and sometimes attack cells that you need to survive. I developed a severe case, with sores in my mouth and esophagus. As a consequence, I couldn’t drink or eat and eventually had a difficult time breathing because my tongue swelled. At one point I was a real-life patient at the center of a Thomas Eakins painting, encircled at close range by a cluster of white lab-coated Philadelphia doctors, which is not something anyone should ever aspire to.

Nadir for me was when they transferred me off the specialty oncology floor and into intensive case. If the hospital environment itself was an alien environment, the ICU is the real-world version of being in a Twilight Zone episode. It’s a high stress environment that is crowded, has bad light and acoustics, and poor air. There are a lot of monitors and nothing to eat.  Come to think of it, it’s a lot like traveling through Terminal A at Newark Airport.

Unlike a regular hospital floor, there is no idle chatter or banter among the practitioners.The doctors and nurses in ICU behave like Tiger does when holding the lead in a tournament. It’s game day and everyone has their game face on all the time. My doctors were baffled by my particular set of symptoms so they assembled a multi-disciplinary team to discuss my case. It was truly a surreal scene. Due to my condition I couldn’t speak, but I could see ten doctors assembled around my bed in a “U” formation and they spoke of me as if I weren’t there. The team included a pharmacist, my oncology team, and specialists from Infectious Disease, ENT, Allergy, Radiology, Neurology, Gastroenterology and Intensive Care. It seemed like every department was weighing in except the Obstetrics and Gynecology team, although I was in such a daze they could have been there too and I just missed them.

Even with all that firepower they couldn't figure out what precipitated my rapid demise. I will spare you the gory details, but the ICU doctors saved my life. I had to be intubated first through the nose (not for the faint of heart) and then when there were complications, through the mouth, and it was touch and go for a while. God bless everyone who helped save me and “the wife,” who literally stood by my bed for 72 straight hours. It's affirming to recount the story now, after the fact, with a good outcome, but I can assure you in the moment, when you have that many talented people trying to identify the problem and failing to come up with a definitive answer, it is terrifying.

As if I didn’t have enough problems with the cancer, one of the consequences of being in ICU for three days is that I came back to the oncology treatment floor a basket case. Since I couldn’t eat, they had to feed me something that looked like wallpaper paste intravenously (it’s called TPN). It turns out that TPN has a lot of sugar in it, so I developed diabetes. In addition to all the other IV medications and pills I was taking, I had to be pricked several times a day to have my blood sugar level checked and given an insulin shot in the stomach to correct any imbalances. I began May looking like a poorly aging version of Keith Hernandez. In a short period of time I was doing a pretty good impression of a fasting Mahatma Gandhi: mustache still intact, but bald and frail, my days spent largely in bed while occasionally shuffling around in a white sheet.

Ever the optimist, rather than viewing the debacle I went through as problematic, I felt lucky to be in the care of such experienced and determined people who excelled at what they do.

Since I spent the entire month of May in my room, which overlooked the University’s central quad, I got to watch the preparation for the graduation festivities and to dream of one day getting better and being able, first, just to go outdoors, and then, of being able to golf once again. Barring further complications, I’m still hopeful that things can come together and that “the wife” and I will make it to the Masters this year.

Post Script - For the physician readers among my followers, two weeks after the incident I got a visit from the Allergy doctor, a professor at Penn who was part of the bedside huddle. Frustrated by not being able to help, he wouldn't let my case go and went away and did research in the medical textbooks. After reviewing my blood work from the time he concluded that I had a rare condition called 'acquired angioedema' brought on by the leukemia, and he found a specialty medicine to treat me if the condition ever returns.

We live in a time of heightened animosity across many parts of our life these days, especially in the political arena. The cable news driven tribalism that is dividing us is troubling. It is easy to become cynical and have a lack of trust. This is a busy guy, he could have easily gone on to other things after my condition passed. He didn't, which is encouraging to say the least. He is just one small example of people who go above and beyond and shows there are plenty of good hearted, caring souls among us. Among other life lessons he reinforced, such as, persistence matters, he has helped reorient me to focus on the positive and not the negative, something that is increasingly difficult to do in the negative media environment we live in.

Wednesday, January 30, 2019

My New Augusta National Quest - Post 2 - "Induction"

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I'm fighting hard every day to get back here

Despite the density and its negative reputation, I have always found New Jersey to be a pleasant place to live. Granted, I don’t live in Jersey Shore country, nor near Bada Bing! Think about the benefits: living one hour from New York City and one hour from Philadelphia offers access to the best pastrami sandwiches and cheesesteaks in the world. From a golf standpoint, it’s also nice to be able to have a short drive to both Pine Valley and Merion and to be a couple of hours from the National Golf Links and Maidstone. I have been healthy my whole life and prior to my diagnosis never gave much thought to medical care. I consider myself lucky that I was treated at the University of Pennsylvania, a sophisticated teaching hospital.

They say you want to be treated by someone who specializes in whatever your particular affliction is. So, if you need have knee surgery you want to go to someone who only does knees, all day, every day. It turns out that Penn is one of the best hospitals in the world for treating my type of leukemia, called AML. They have a large team of doctors who do nothing but treat this insidious disease all day. After my initial 48-hour rapid response I started to receive care from an impressive group of doctors and nurses. The results of my bone marrow biopsy revealed that I had a particularly virulent strain of the disease known as an FLT-3 mutation. As the great Yankee Lou Gehrig said, I caught a bad break.

Leukemia isn’t hereditary and there is no good predictor for it. It just comes, literally, in the case of AML, out of the blue. The standard course of treatment for my mutation is three regimes of chemo followed by a bone marrow transplant. AML is the same form of leukemia that tragically took the life of Australian PGA golfer Jarrod Lyle at age 36. That brave soul first had the disease as a teenager and had it come back twice more, going through the standard course of chemo treatment and a transplant each time. That poor courageous man, may he rest in peace. How anyone could go through this ordeal three times defies imagination and would tax even the most optimistic of us.

You know the odds of survival aren’t great when the doctors and nurses hesitate or look away when you ask them what your life expectancy is with this disease.

It depends.

The worse thing in the world you can do is to Google any disease. You only read the horror stories and of high mortality rates. “The wife” has wisdom and implored me to ignore all of them. Medicine has advanced significantly in the last 10-15 years; the statistics can be misleading or not applicable, and there are new treatments and drugs coming onto the market all the time. Ignore it all the wise one said. Even if there is just a small percentage of survival, you truly must believe that you are among that group and you have to fight for your life every day.

My entire month of May was spent tethered to one or more IV machines. I was getting medication 24 hours a day 7 days a week. And for those who have been lucky enough not to endure an overnight stay in the hospital, count your blessings. Make it a life goal never to do so. Sleep is a luxury, as is normal food. Privacy and personal space don’t exist. It is an artificial, antiseptic bubble that is the anthesis of normal life, although I must say that commuting for so many years through the dungeon that is Penn Station in New York did prepare me somewhat for the ordeal. Between the pain, the chorus of machines beeping and the nurses taking your vital signs or administering medicine every four hours, it is an alternate reality to anything I have ever experienced. I am not complaining, to the contrary, I am exceedingly lucky to have had 24-hour medical care by experienced providers and these people are true heroes.

Between my golf quest and my occupation, I have lived in a bubble the last 25 years. I work in the finance world, and Goldman Sachs CEO Lloyd Blanfien infamously said in 2009 that he was doing “God’s work.” The thing is, a lot of people that work in finance believe that what they are doing is noble. “I help people save for retirement or for their kid’s education,” you will hear people say, or we “help raise capital for people to start companies and create jobs.”

It’s a righteous way to describe pushing paper around and using other people’s money. It’s hardly noble or “God’s work.” Nurses caring for cancer patients in the middle of the night is God’s work and far more saintly than working on Wall Street. I’m in a bubble no more. The attendant in the ambulance that took me to the hospital was lamenting how she had to work two jobs and recently had her car repossessed. When I asked the nurses why they worked the night shift the answer was almost universally because it paid more money. The Hopi Indians have a word that describes how we value caregivers: Koyaanisqatsi. 

It means life out of balance. How is it as a society that people who put their lives on the line for us, run into burning buildings, and nurture us back to health during our darkest hour aren’t the most prized and well paid? The military have a more succinct description of it: FUBAR. This prima donna now clearly sees that our societal values are backwards.

In any event, I didn’t have much time to think about golf or to dream about my future in May, as the disease overwhelmed me. I was equally overwhelmed by the avalanche of love, prayers, positive thoughts and encouragement from friends and family. Thank you.

Monday, January 21, 2019

My New Augusta National Quest - Post 1

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Your author in happy and healthier days at Augusta National

I have a tradition on my website, which is to post a year in review summary each January. Well, I didn’t have much to write about last year since I only played one round of golf because it was a true annus horribilis, to coin a Latin phrase. There is no other way to describe my dreadful year. You may have noticed I haven’t posted since May 1st 2018, which is fitting. On May 2nd I was diagnosed with leukemia. My demise began when I was feeling generally tired and having cold sweats at night. I just chalked it up to too much work and travel, too much flying, and too many nights in hotels. “The wife” thought it might be Lyme disease, so scheduled me to have a blood test on the first of May.

It’s never a good sign when a doctor calls you, right? It’s impossible to get an appointment at most doctors and once you get an appointment you sit for extended periods of time in the waiting room while being forced to watch The View. Once you actually see the doctor the visit feels rushed and they mostly do administrative work while staring at their computer. Aside from Joe’s Stone Crab, what other business model do you know that survives while making people wait? Ok, airlines and railroads also, but you get the idea.

I was driving to work on May 2nd (Black Wednesday), and my primary care doctor calls first thing in the morning to tell me that the blood test he drew had a bad result. And that I had to go to the hospital immediately to have another blood test to make sure it was not a mistake. I asked what he thought the problem was and he said that my white blood cell count was sky high and it could be leukemia. I didn’t know what leukemia was and had to ask. It is cancer of the blood.

I drove to the emergency room in Princeton where they re-did a blood test and confirmed that my white blood cells were through the roof. A normal range is between 4 and 11. Mine was 90. Leukemia requires such a specialized treatment that I couldn’t be treated in a good-sized, respectable hospital in a university town. I had to transfer to a hospital that specialized in leukemia treatment. I told the ER doctor that I wanted to go home and get a change of clothes, get some toiletries and that I would have “the wife” drive me down to the Hospital at the University of Pennsylvania. Body language and expressions tell far more than the spoken word. He didn’t have to say a word, the look on his face told me my imminent heartbreaking fate.

When he did begin speaking he said that my white blood cell count was so high that I was at immediate risk of death by stroke or blood clot and that the only place I was going was into an ambulance after they began an oral dose of chemotherapy.

I must say that in the world of medicine I am naive. I thought when you get cancer they had to run a battery of tests, you could get a second opinion, you could think about which course of treatment you wanted to pursue and weigh your options. At a minimum, you could go home to get your favorite sweatshirt. It turns out there are two types of leukemia, chronic and acute. I had an acute version which essentially requires emergency intervention and treatment on the spot.

The next 48 hours were easily the worst of my life. Upon arrival at Penn I was greeted by a team of doctors and nurses and admitted to a specialized floor for patients with blood diseases. The veins in my arms endured more than twenty incursions by needles so that my caregivers could run a variety of tests and begin to give me more than a half dozen medications intravenously. You’re heard of death by a thousand cuts. My journey began with death by a thousand pricks. And that was the easy part. The real fun began with my first bone marrow biopsy. In order to properly diagnose the exact strand of the disease the doctors have to extract marrow from the bone in your lower back. Let’s call it an invasive procedure and one where there really is no good way to anesthetize the area.  The procedure takes about 15-20 minutes and you can actually feel the marrow being pulled out in about 20 seconds of pure terror.

My life as I knew it was over.

And the day had begun simply enough. I had woken up, had breakfast and coffee and had a full day of work planned. Now I was under intensive treatment for a dreadful disease and would be in the hospital for the next 30 days. And the worst was yet to come.

Anyhow, the purpose of this post is not to depress you or to seek sympathy. I find writing cathartic and hope it helps. As my normal readers know I have always been a big believer in fate and to switch my metaphors from Latin to Roman mythology, Fortuna had different plans for me than the ones I laid out. Readers had always asked me, what will you do now that you’ve played the top 100 courses in the world? I didn’t really have any meaningful golf related goals so I thought I would wait and see what happened.

Well, this debacle happened.

It has been almost nine months since that dreadful day in May and I now have some new goals I want to achieve. As far as goals go they are basic:

1. Survive cancer
2. Go to Augusta this April to watch the Masters in person one more time
3. Play golf again

For those that have the fortitude for it, I will chronicle my new quest through the blog.

God willing, more to come over the next 12 months on my trials and tribulations, chronicling my fight, with observations about modern medicine, fairness in life, opioids, and golf  . . .

I still have some significant hurdles to overcome but can’t wait to immerse myself in the greatest game once again.

Tuesday, May 01, 2018

Royal Dornoch Golf Club


Royal Dornoch was the first course I ever blogged about, in a rather short post; after a dozen years I finally had a chance to return and give a more comprehensive write-up. 


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The golf gods were welcoming on my return visit to Royal Dornoch, rolling out a lovely rainbow as I made my way down the first fairway


One of the finest pieces of writing ever done about golf was written by Herbert Warren Wind in 1964 titled North to the Links of Dornoch, which he penned for the New Yorker. It is an exceptionally written long form essay about the wonders of golf in Scotland. Readers wishing to delve more into it can find it in the book Following Through : Herbert Warren Wind on Golf. Not only does he give an extensive history of the course, but also tells the tale about how at the time of his visit Royal Dornoch was not visited very often because of its location far to the North. He credits Pete Dye with making the trek up and then began to spread the word about it. In Dye's words: "No other links has quite the ageless aura Dornoch does. When you play it, you get the feeling you could be living just as easily in the eighteen-hundreds or even the seventeen-hundreds. If an old Scot in a red jacket had popped out from behind a sand dune, beating a feather ball, I wouldn't have blinked an eye."

Wind's comment about the course is as true today as on the day it was written: "No golfer has completed his education until he has played and studied Royal Dornoch."

Although golf has been played on this land since the sixteen-hundreds it was Old Tom Morris that laid out the "modern" nine holes in 1885. According to Wind, "... in 1904, the wholesale changes that transformed Dornoch from just another course into a bona-fide championship layout were carried out under the direction of a remarkable all-round golf man, John Sutherland, who for over fifty years served as the club's secretary."

Wind continues, "Dornoch is a loop-type course--in this instance, eight holes out, ten holes back--but the repetitiousness generally inherent in this kind of layout has been avoided with a fine resourcefulness. On the eight outward holes, which are set along a shelf of high land, the tees have been placed so that the fairways do not swing quite the same way on any two holes, and as a result the wind hits the golfer from all directions. The incoming holes manage a similar diversity by rambling up and down between the crusty higher land and the duneland by the sea."


Lucky is the golfer who visits the linksland of Dornoch when the gorse is in bloom

My return journey (this is my third visit, although the first time I brought a decent camera) was during October, and it was cool and windy. As the local forecast for the day stated, with the usual understated Scottish elegance: “Weather on the turn. A bit drafty.” Since rain was coming in in waves, it prevented an abundance of pictures, but enough for me to give you a flavor.

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1st green from behind

As is widely known Donald Ross spent considerable time at Dornoch. For those wondering about his penchant for inverted bowl greens like at Pinehurst, the opening green gives a clue.

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The golfer missing the second green left faces a tricky uphill shot: putt or hit a wedge fat?

The second hole is a par three with a plateau green, like the first. If you miss left of the second green, this pictures shows the severity of the wee hill you must navigate. The first two holes are away from the Dornoch Firth and are somewhat isolated. It is only when you walk from the second green to the third tee that the expanse of Dornoch becomes visible. As my friend and fellow golf fanatic Paul Rudovsky puts it, "the rest of the course to the north is open in front of you and the sight is something to behold. It is like someone opened a curtain."

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The par four fifth hole features a raised greens protected by riveted bunkers

As a classic links, Dornoch has everything you would expect including sand dunes covered with gorse, as can be seen above the fifth hole. The sixth is another perfectly executed par three of roughly 150 yards, also with an elevated green with steep slopes to the right.

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The rumpled, downhill fairway on Dornoch's 7th hole as seen from the base of the hill looking back.

It took a while for me to remember the holes at Dornoch and by the time we reached the par four seventh I remembered why this is such a revered course. Seven has a blind tee shot and the fairway tumbles down the hill toward the North Sea along ancient fairways.

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The tricky green on the 7th is situated near the water


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The green on the 9th hole, the epitome of pure links golf




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The 14th fairway at dusk. The 445 yard hole features no bunkers and doesn't need any!

More from Herbert Warren Wind on Dornoch, "I should imagine that Dornoch usually elicits a golfer's best game. It doesn't overawe you with its length. It keeps you on your toes by making it clear from the outset that it rewards only shots that have been well thought out and executed. And it encourages you to hit decisive shots by providing vigorous, close-cropped turn, on which the ball sits up beautifully, and very true greens, which are a joy to putt. I found Dornoch all I had hope it would be -- a thoroughly modern old links with that rare equipoise of charm and character that only the great courses possess."

The finish at Dornoch is as strong as on any golf course. The par four sixteenth rises up a vertical hill from tee to green and has an oversized putting surface. It is one of my favorites on the course. It is such a simple and elegant use of terrain, it is a wonder you don't see it used more in golf design. The 17th might be the most fun of all the holes on a course with plenty of them. A par four of roughly four hundred yards features a blind tee shot. The course guide describes it aptly as "from the heights to the depths!" because the fairway falls into a big valley. Your shot (either second or third) is at an obtuse angle to an elevated green. Eighteen is a demanding 450-yard par four that isn't too challenging tee to green, but when you approach the final green you see the gully that protects the green. Whoa.


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From my original visit to Dornoch, playing at dawn in a two-some

The English writer, Dell Leigh wrote the following about Dornoch in 1925 and it is still true today, "The very journey thither is a pilgrimage of pleasure of the kind which remains crystal clear in the memory long after the return to the drab side of life. And the very fact that one cannot say in bold words that the links are definitely this, that or the other thing instills into the mind a predominant feeling - the desire vehemently expressed, to play over them again, and then once more."

I can't wait to return again.