By David Weinstein
It is 7:45 on Wednesday night. I am driving to Coleman Elementary School with my third-grade son in his car seat behind me. He’s in a performance at school. The phone rings in the car and I pick it up. Earlier that day I had been at a standard annual check-up and everything looked good, pending the results of the lab work.
At the other end of the phone was my doctor saying, “David, get yourself to the closest hospital emergency room. I think you’re going to have a heart attack or a stroke.” I told her that I wasn’t in a place to joke around. “Shall I call you back when I’ve arrived at school?” “Yes, call me back. This is not a joke.”
I returned the call after my son was in the school building. My doctor explained that my white count was 273,000, the consistency of whipping cream, and that I shouldn’t be awake or upright.
So I went home, closed the shades, turned off all the lights and my phone. That will make it go away. Then there was a knock at my door that wouldn’t go away. The person knocking was a very good friend who was filling in as my conscience. He was unwilling to co-sign my denial. Off to the ER we went.
Shock and denial. Plans rescinded. Goals interrupted. Reality is inconvenient. These states describe the first week or so during the diagnostic process; and when genetic validation of the suspected disease was confirmed, the willingness for absolute surrender to the circumstance and potential solution became paramount. Sinking my claws deeper into the steering wheel, trying to drive the bus in my preferred direction had to be abandoned because I had no sense of direction and no map.
The best outcome was going to be the result of turning over control to those with the science and experience. This meant release of any form of control over my life, my surroundings and my future for an undetermined period of time; perhaps the most difficult thing I have ever done. It required complete blind trust in the science and the professionals administering protocol.
Once a clear diagnosis was in hand, the day came when my hematologist, oncologist, immunologist, their nurse practitioner, a few family members and I were sitting around a table in a conference room at the University of California, San Francisco (UCSF) agreeing to the game plan. That game plan included the acknowledgement in writing that the estimate of my survival after the initial month as an inpatient was 20 percent; zero, if I did nothing. At that moment I gave up concerns about a single versus double room, having a coffee maker in my room, etc. I opened both palms up toward the ceiling.
I signed the acknowledgement form, having surrendered my health. It is not mine while I’m under their care.
The next day I checked into UCSF as an inpatient; and thus became a series of rather long stays, to be described fully in the next BLOG.