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.
Followed your account for years and has provided with some great reading time, over and over again!
ReplyDeleteAll the best on this journey and keep the focus on Augusta!
Just stumbled onto this blog when researching Seminole, Im playing there this Spring. Ive been fortunate to play about 10 of the courses on the list... congratulations on your completion of this and good luck with your treatments. I will be in Augusta for the week, hopefully you will as well.
ReplyDeleteThanks for providing some great reading.