The following is a post made to a list of my colleagues at Stagen. So if you have already read it just be reminded of the invitation to my ordination this saturday and I promise more frequent posts now that some of my strength is returning.
I’m sorry it’s been so long since I’ve written, but I have some pretty bad news and I wanted to wait until after the holidays to tell you about it. On October 26 I had an operation to remove my bladder and build a new one using a piece of my bowel. It was a long, difficult, 9-1/2 hour procedure that required ten days at MD Anderson Cancer Center for recovery before I could be sent home.
The good news is that the operation was a success and during the two weeks following the surgery I seemed to be getting stronger and was feeling much better. The bad news is that suddenly, I got hit with a pulmonary embolism (PE). Blood clots in my legs broke lose, migrated to my lungs and left me unable to take even a single step without gasping for air. I was rushed by ambulance to South Austin Hospital, where I spent a week on blood thinners, just getting stabilized after this life threatening condition.
From there I was transferred to St. David’s Rehab Hospital, where the skill and determination of the doctors, nurses, Occupational and Physical Therapists (OT’s and PT’s) brought about a significant improvement in my condition. I was once again able to walk short distances with the help of my trusty walking stick. My appetite returned and I readied myself for a trip back to MD Anderson for what I thought would be additional chemotherapy.
Unfortunately, as I learned when I talked to my oncologist, my pathology report following the operation indicated a poor prognosis. Microscopic cancer cells where found in 37 of the 60 lymph nodes they removed. To make matters worse, the PE disqualified me from the clinical trial that I was enrolled in for a drug called Avastin, One of Avastin’s known side effects is that it can cause circulatory problems. My physician, citing her oath to do no harm, said she could no longer treat me with Avastin for fear of killing me. With that, my active treatment at MD Anderson ended.
The good news is that my first set of CT’s found no evidence of additional cancers, which both my oncologist and surgeon found somewhat surprising and encouraging. I am also looking into some alternative medical treatments. The bad news is that there’s a 90% chance the cancers will return and if they do, it is likely they will take my life.
I am now scheduled to return every eight weeks for scans to determine whether or not additional cancers have formed. Those are the brutal facts.
Hello. Goodbye.
Paula and I just returned from a wonderful trip back to our hometowns in Pennsylvania to see friends and family during the holiday season. One of the friends we visited, Susan Herrick, was unaware of the severity of my condition and when I described it to her, she got teary. She came around to where I was sitting, took my hand in hers, and said, “I don’t want to say goodbye.”
I replied, “I’m not here to say goodbye. I’m just here to say hello.” And then something inspired me to sing, “I don’t know why you say goodbye. I say hello. Hello. Hello.”
It broke Susan’s mood. She jumped up, went to the piano and started picking out the tune. I am writing to you not to say goodbye but to say hello and to thank all of you for the wonderful love and support, the caring, the prayers, the cards, the calls, the e-mails and text messages. They kept me going through some very dark times.
I am actually feeling OK right now. I had a recent conversation with my dear friend Cindy Wigglesworth, in which she asked me how I was feeling. I paused and reflected, searching for the answer. Finally, I told her, “I’m not afraid and I’m not depressed. What I am, mostly, is curious. How will this amazing story work out?”
I am also finding that with my somewhat frail condition, it is actually easier to stay focused on what’s right in front of me, to just eat my fruit, read cards from my friends, and enjoy time with Paula. I will try to do a better job of keeping you updated with what’s going on with me.
You Are Invited to My Ordination, Saturday, January 16, at the Austin Zen Center
The big news right now is that on Saturday, January 16, at 2:30 p.m., I will be ordained as a priest in the San Francisco Zen Center Lineage of Suzuki Roshi. It is the culmination of 18 years of disciplined Zen practice and study. You are all invited to attend the ceremony and reception held at the Austin Zen Center, 3014 Washington Square, Austin, TX 78705-2218. Please stop by and say hello. Hello. Hello.
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