Dear friends and family,
Greetings from Houston. It has been an interesting few days here at MD Anderson. It is Friday, and I’m lying on a standard adjustable hospital bed receiving a couple of units of blood because of anemia. For some reason, I’m low on hemoglobin, which is kinda important. We don’t know why I’m anemic, but it is probably somehow related to the bloody tumor.
When I last posted, it was after my previous visit here, about 3 weeks ago. I had hoped then to receive word from the surgeon that he thought it best to proceed with surgery to remove all of the diseased tissue in my pelvis. However, we were surprised, and I was admittedly disappointed, that he was pretty firm that surgery was not the best course of action and that I should instead pursue the recommended treatment option for me. However, you may recall that my surgeon had promised to present my case to a weekly “tumor board” to get their consensus on the suitability of surgery– I think just to placate me.
So, we took the elevator from the 7th floor to the 11th and met with a group from the Investigational Cancer Therapeutics department. We discussed my participating in a clinical trial for a theoretically promising immunotherapy option, since my cancer had previously responded to the drugs from a different immunotherapy when I was receiving treatment from the Sarah Cannon Cancer Institute in Nashville. Over the course of the past few weeks, I have worked with the research coordinator at MD Anderson and various groups involved with insurance and billing to make sure we were all set for the final screening for the trial this week and to begin treatment the following week. My Inbox blew up with emails notifying me of changes to my appointment schedule for the next couple of months. I never received any feedback from the surgical group, so I assumed the tumor board had agreed with my doctor that surgery wasn’t wise, but I sent a message to solicit their recommendation anyway.
However, all that work may be for naught, as Wednesday, the day we arrived, initiated yet another time of confusion and uncertainty. You’d think I’d be accustomed to this by now.
Kim and I arrived in Houston early Wednesday afternoon. After checking in to our favorite hotel, the ZaZa, we settled into a booth at the hotel’s Monarch restaurant. Kim stayed behind to work when I took a shuttle over to the hospital to get the first of several blood draws for tests that are required by the drug sponsor to ensure that I meet the requirements for the phase I study. After giving the blood, I called for another shuttle back to the hotel. As the large, black Denali with bull horns for hood ornaments wound its way through the maze of buildings in the Texas Medical Center, I pointed out to the driver, Big Mike, the large fountains at the back of the MD Anderson Main Building. I told him how, back in 2016 after the failed surgery to remove the tumor, I had said one day I would run through those fountains in my underwear after the doctors informed me that there was no longer any sign of disease (not necessarily cured, mind you). I asked Big Mike how I’d ever get a chance to run through the fountains if the doctors weren’t going to remove my tumor?
When I returned, I rejoined Kim at the booth in the Monarch. We had time before dinner, so we chilled, each with our laptops open in front of us, enjoying 5 o’clock-somewhere cocktails and doing some work (well, Kim was, I’m finding it difficult to concentrate). My phone buzzed, and I answered the call from the 713 area code quickly. I was surprised when I found the surgeon’s nurse practitioner on the line. In her soft but somewhat deep and raspy voice, she explained to me that the consensus from the tumor board was to proceed with surgery, the very scary pelvic exenteration. Medically speaking, this procedure would be considered palliative, meaning that the goal is to improve my quality of life, not to cure me of cancer.
My head, of course, began spinning. Faced with the decision of whether or not to undergo a 12-14 hour major surgery, which would require at least a month of recovery in Houston and which may or may not cause significant complications and a permanent limp, versus taking the risk of spending precious weeks receiving a totally unproven, experimental therapy, which might have no effect on the cancer whatsoever, is beyond my mental and emotional ability at this point…Jesus take the wheel.
A few weeks ago I was set on surgery, but after psyching ourselves on the possibilities with these new drugs, now I don’t know what to think. My conversation with the nurse practitioner ended with the plan for her to get the surgeon and the investigational therapy doctor together to discuss my situation in order to give me their recommendation. After that, I will be forced to trust them.
Because of this unexpected turn of events, instead of getting a PET scan and a biopsy today, I’m receiving a blood transfusion and waiting to hear from the nurse practitioner so we can make a plan. The clock’s incessant ticking continues to stress me out, of course. All I can do is trust that God is ultimately in control. I really have to trust Him. This doesn’t require much planning, though, just taking life day by day and moment by moment. I’ve never been any good at that.
Those fountains. Maybe I will get a chance to run through them after all. It ain’t over yet!