Well, it’s finally here. Football. And it couldn’t have come at a better time. I told my wife, Kim, yesterday morning as I lay in bed that, despite the fact that 2019 has been the most difficult of my entire life, I have to be thankful for the time I have gotten to spend with my kids. The summer, in particular, provided plenty of opportunities for simple, easy one-on-one time with my not-so-little-anymore monsters. I agree that we shouldn’t dwell on the past, but since I’m essentially bed-ridden at the moment, I’m keenly aware of the fortuitous (err, Providential) timing of my being mobile and available to spend time with my children while they were out of school for the summer. So on the opening college football Saturday of the year, as I stretched out on the black, leather sectional in the basement, I had a valid excuse to eschew housework and watch the mostly boring and sloppy first-week games of my choice. Actually, to be honest, my 14-year old son tends to control the remote, but I don’t care because we’re together. He loves to encourage me to keep fighting by saying, “cooooome oooonnnnn, Daaaaaad.”
If you read my previous post, you know that the surgical course in Houston at MD Anderson was scrapped at the last moment, which was our worst fear, not because I was looking forward to a total renovation to my abdominal cavity, but because we had waited such a long time, while not receiving any treatment, and now my disease is troublingly advanced.
Initially, we thought we had covered our bases with a clinical trial backup plan, but this wound up being a no-go because the eligibility requirements changed since we had considered it a couple of months ago. Whereas previously I was an ideal candidate because the MRI revealed a new, subcutaneous nodule in my peritoneum (yay?) that would be used for direct infusion of drug, I now am excluded because the study requires two subcutaneous nodules and I only have the one (damn?). Sigh.
In this fight, it is so difficult to know what to hope and pray for.
So, last week was about determining a new, therapeutic approach. We made an appointment with my oncologist at Sarah Cannon in Nashville because, from a patient standpoint, we consider Sarah Cannon the best facility for clinical trials for cancer drug development. We drove up Sunday afternoon for a Monday consultation. Unfortunately, at the moment there are no spots available on trials for which I am potentially eligible. But the good folks have pre-screened me for a few options should I be in need later in the fall. “OK Kim, drive us home.”
Next, we took a flight to Houston on Wednesday morning. This trip was supposed to be easy and smooth. I had two appointments on my schedule, much like my visit to Sarah Cannon: bloodwork and discussions with the medical team. But, as we had already been pre-screened for a trial there, we expected the focus of the visit to be the signing of consent and the scheduling of our visits per the protocol. But no. ‘In the time of chimpanzees I was a monkey…Soy un perdedor…I’m a loser baby…’ Thanks Beck. This is what I was thinking when I found myself waiting for a blood transfusion later that night because my blood tests showed that I was slightly anemic. My hemoglobin was too low for the trial. Kim and I were beyond incredulous.
I want to be careful here. Behind the closed door of the examination room of the Investigational Cancer Therapeutics department, things got a little heated and emotional when it was revealed that we would be unable to sign consent for the trial and begin treatment in two weeks time. Instead, we were informed that we would be delayed a minimum of two additional weeks, days wasted off treatment and where my spot on the trial would be open to other cancer survivors who might benefit from the therapy. Let me state simply that Kim finally lost it. She had no issue expressing her frustration with the U.S. News & World Report #1 cancer center. “Nothing good has ever happened when we’ve come here.” “Where is the world-class care?” “My mother-in-law had to pay for 2 plane tickets and a hotel room only for us to be told he is ineligible based on a blood test we could have taken at home?” “Sarah Cannon would have had all of this figured out.” (I paraphrase here because I think my memory was affected by my jaw hitting the floor).
Fortunately, the oncologist finally came in and calmly made a plan that would, hopefully, ensure that I wouldn’t lose any more time: blood transfusion that night and a retake of the blood test the next morning. They will check the hemoglobin level again before I get treated, of course. Either way, it was time to call Delta and change our flight in the morning; the simple appointment that we thought would have us out of the medical center by 5 turned into a transfusion that had us leaving as the housekeepers were performing the nightly cleaning at 11, and me returning the following morning at 6:30. (yawn)
The good news is that I signed the consent forms to become a participant in an immunotherapy clinical trial at MD Anderson, which we pray will commence in two weeks. The trial sounds promising, and I hope it helps, because I really need some help. The difficult thing is that, based on how we interpret the trial documents, for the first 11 weeks I’ll need to stay in Houston for 3 consecutive days (probably Wed – Fri). What’s more, because of the possible side effects of the therapy, I’II actually be admitted to the hospital for the treatment. The medical team has to monitor me very closely because my immune system could overreact and trigger something very dangerous called a “cytokine storm.” So, this trial is intense and demanding, but, assuming the therapy is working, once I reach the 5th cycle (11 weeks), I only travel every 3 weeks.
As from the beginning of this journey years ago, we appreciate your prayers and are encouraged to persevere from your love and support. I wish I could say that I’m officially on the trial, but it isn’t a done deal yet. The very first week will require me to be in Houston the entire week, as I have to undergo a series of tests to measure baseline data for the study. We don’t expect any problem, but, man, how many times have we said that before?
The first week is the 9th-13th.
Note: The featured image is from our recent trip to Seattle before school started.