I Do Live a Charmed Life
I have a pre-leukemic condition called Myeloblastic Syndrome (MDS). Leukemia is a cancer. I never thought i would have cancer.
I’ve always believed that I live a charmed life. When the hematologist told me that I have a pre-leukemic condition called MyeloDysplastic Syndrome (MDS), it took me a while to remember what I believe.
I do live a charmed life, even if some people would question my definition of “charmed”. My mother was an alcoholic, deep into the disease when I was born. I had a lonely childhood, despite being surrounded by a large family, and would likely have been diagnosed as depressed and/or ADHD, if those diagnoses were available to children born in the 1950s.
I was a lousy student after third grade. I nearly failed out of my middle school before I left for boarding school. I did fail out of the first boarding school I went to and stayed back a year in the second one. I made it through college, but was one credit shy of what was needed for the diploma at graduation. (I made up that one credit by taking a photography course that summer, so I did get my diploma.)
Before I could graduate, in 1974, my father died — at the age of 60, of complications from leukemia. Since then I have been fired from three jobs. I’ve been divorced twice. I was in therapy for more than 20 years. And here I am at the age of 65, diagnosed with the same kind of blood disease my father had, even though it is not hereditary.
But that’s just the headlines. The real story? I have a remarkable family that includes three great children, two amazing grandchildren (the best grandchildren ever!), a loving and supportive wife with two stepdaughters, and five siblings who have produced thirteen nieces and nephews some of whom themselves have produced five great-nieces and great-nephews (so far).
I am the co-founder of a successful venture capital firm with my business partner, whom I have known for 32 years and to whom I have been work-married for 11 years in a great partnership we informally call The Geek & The Gadfly. (Yes, dear!) My investment partners and associates, our limited partners, and the entrepreneurs and co-investors I get to work with are a rich network of interesting, smart, motivated people who allow me to be engaged in the technology that is changing and challenging the world around us. Not to mention that I’ve managed to make some money, and I live an incredibly comfortable life.
Now, faced with a life-threatening disease, I happen to live in a world class city, just 21 minutes by car from one of the best hospitals in the world (UCSF Hospital) with one of the best hematology clinics in the world (UCSF Hematology & Bone Marrow Transplant Clinic).
My doctors caught my disease early because I had two blood clots in my right leg in 2015 and 2016. The second clot led my primary doctor to refer me to a hematologist to investigate lower-than-normal blood counts. (Blood counts actually count how many red blood cells, white blood cells, and platelets you have, all of which play a role in how well you deal with various health issues.) Blood clots are lousy things that can kill you if not treated promptly, but they are an excellent motivation for getting people to pay attention to the condition of your blood. It turns out that my blood counts had started declining, gently, in the spring of 2016, just a year ago but about nine months after my first blood clot.
MDS and leukemia reduce the number of platelets you have (along with the red and white blood cells). Logically, that would seem to reduce the likelihood of clotting, making me wonder why I was lucky enough to get clots so that my doctor would check out my blood counts and discover that they were lower than normal. Because of those clots, I am now being treated for MDS, and getting that treatment earlier and younger than virtually anyone else. (In this world, 65 is considered young.) The objective of the treatment is to prepare me for a bone-marrow transplant, and to identify the donor of the bone-marrow stem cells.
We started with matching my blood to that of my siblings, the most likely source of a match — the hematologist actually smiled when I told him I have five siblings; he said that increased the odds of a successful match to 70%. One of them, my next-youngest brother Nicholas, has blood that is a perfect 100% match for my blood; he will be the donor who provides me with fresh new marrow to continue living my charmed life. (May I observe that the rest of my siblings seemed disappointed that they didn’t win the blood-typing derby?)
Faced with having to tell people about my diagnosis, I realized that I have had the privilege of touching so many people during my life — both in my first career as a technology journalist and in my second as a venture capital investor — that there was only one way to let everyone know about my prognosis, which is to write about it. I have lived my life in public — writing columns, producing events, challenging CEOs of technology companies, engaging with technologists and thought leaders, investing in entrepreneurs and companies — for more than 40 years since I barely graduated college in 1975. Both of my wives, my business wife, Gilman Louie, and my real wife, Valerie Grison-Alsop, instantly agreed that the only way for me to tell all of the people that I know without leaving anyone out is by writing about it.
I believe that I have 100% likelihood of survival. In MDS, the judgement is that if your bone-marrow transplant is successful, and you do not relapse within two years, the overwhelming likelihood is that you will live your life as you would have without the MDS. I choose to not even consider the alternative, because I know I live a charmed life.
Thank you to my friend Peter Zandan for finding “Charmed Life” by Mick Jagger to commemorate this post and my wife, Valerie, for finding the lyrics.