Has it really been over a month since my last update? I suppose one could conclude that not much has occurred and thus there has been little to report. But au contraire! I had to read my previous post to remember where things stood at the end of February. I had just returned from Sarah Cannon, swallowing the news that I could not participate in a promising trial but hopeful that I could get started on a different trial at the first of March. Well, the rug was pulled out from under me, so to speak, rather quickly, as, for reasons for which I’m still unclear, I lost my spot in the upcoming trial, which I discovered was my last option at Sarah Cannon. Fortunately, my oncologist in Nashville is friends with the drug development oncologist at MD Anderson, whom I had met a few weeks prior. In order for me to not lose any time, my Nashville oncologist referred me to her colleague in Houston, and we made appointments to pursue starting a trial there. All of this was taking place around the first week of March. Yes, the situation was urgent and changing quickly. And then it happened. I made a decision that has completely redirected my course and left me at home recovering from surgeries.
I made the decision to stretch my back.
Yes, I was sitting in my easy chair on a Sunday evening– I believe it was March 3. I felt like my whole body was compressed. I already knew that I currently measure an inch shorter than I did (or so I claimed) in high school, so I took matters into my own hands and lay down on my back on the living room floor and stretched my arms behind my head. It was, I thought, a minor thing. It felt good. I certainly didn’t feel any pop or other strange internal feeling.
Sometime later, though, I felt the urge to visit the restroom. And it was then that I realized that I was suddenly in even deeper trouble than the unresolved treatment issue. I have debated within myself on how much of the physical story to tell. Unfortunately, I have a “gross” cancer, a cancer of the bowels and the urinary tract. These aren’t things one usually talks about with others, even close family, even spouses–this is why the door to the toilet is shut when occupied. And I’ve decided to keep it that way. All I can say is that my plumbing situation had suddenly become more complicated.
As I contemplated how best to share without violating the rules of TMI, I thought of the underrated and gone-too-soon talent of Harold Ramis playing Egon Spengler in Ghostbusters (the real one from 1984) when he warned, “Don’t cross the streams.” In that private porcelain moment when I realized that I had seriously injured myself while stretching, Egon’s cautionary words came to fruition, just as he said, as I imagined that all life as I knew it had stopped instantaneously.
Is this enough of a hint for you?
From there, all I can say is that I became sicker and sicker as the days went by, though I tried my hardest to pretend I was fine. Either because of the uptake of toxins or bacterial infection (or both), I became unable to stay awake. I started hallucinating. But I carried on. We had plans to take our son, Owen, to New York City, and I was determined that my wife and I would take him. And we did, from March 8-11, though memories are a little fuzzy.
It was the week upon our return from that trip that things got interesting. Knowing that I was retaining urine (I could hear it sloshing about when I moved), I sought the help of my urologist, who, using what looks like a camera on a wand, searched for the source of my problems while my wife and I watched his work on the adjacent LCD screen. After a few twists and turns of the wand, he soon focused in on what resembled a bullet hole but which I knew was a bona fide fistula, connecting my bladder to my colon, an organ that had been resting unused in my gut, sutured closed on one end and blocked by a tumor at the other. Because of the fistula, it was now being used as a secondary bladder and was responsible for my being over 10 pounds heavier than I had been the week before, not to mention ill.
This is where I must say that I’m thankful for my wife and friends (understatement). On Wednesday the 13th, Kim phoned a dear friend of ours, a man I unashamedly refer to as my guardian angel and who fortunately happens to be a nurse anesthetist. She asked him to simply come over and look at her husband (I stubbornly didn’t want any of my friends to see me). It only took a few minutes for him to text a friend of his who is an ER doctor. And it was probably an hour later (I really have no idea, I was out of it) my “local” GI surgeon was in my house and was pressing on my abdomen and asking me a bunch of questions (the “local” thing is now an inside joke. I have another surgeon at MD Anderson, but my surgeon in Athens is outstanding). The bottom line was that I was going to the hospital the next day for some time under anesthesia, the bright lights and stainless steel of the operating room, and the knife.
To summarize, on Thursday the 14th I had nephrostomy tubes inserted into both kidneys to divert urine from my bladder (no more #1), and on Friday I had another abdominal surgery to rearrange, reconnect, and resect my small and large intestines. I now have my 3rd stoma, now a colostomy which I call Oly, from Mt Olympus. So long “Fuji”…we’ll never forget you “Vesuvius.”
So now I’m healing. My colon, which hadn’t been active in over 4 year, is trying to wake up and remember how to do its job. Unfortunately, struggles with the fistula continue, so I’m still in a lot of pain and discomfort from time to time, though I hope my condition will improve with time. As I write, I’m sitting on the back porch of a beautiful home in Sea Pines on Hilton Head Island, spending Spring Break with my family and some of my kids’ friends, all thanks to Kim’s mother, Gaga, who has treated us and joined us, too.
The Message translates Isaiah 43:2 as “When you’re in over your head, I’ll be there with you. When you’re in rough waters, you will not go down.” From the moment my wife called my friend Carlton to come and look at me, to the moment I was wheeled out of the hospital, I was blown away by the care I received from friends and even the medical folks, including my “local” surgeon, who reassuringly provided Kim and me what seemed like special treatment. There was even a short time of tear-filled prayer with the doctor who looked after me in the ER when I first arrived, another friend at the right place at the right time. It occurs to me that this is the manner in which God was with me, preventing the waters from going over my head, not letting me sink in rough waters–people in the water with me.
In the days after my hospital visit, numerous people commented on how much better I looked than I did before surgery. The truth is that if it weren’t for my wife and friends, I probably would have gotten sick enough to die. Sepsis probably. On my own, the water would have gone over my head. Pride would have caused me to stubbornly drown.
So what’s next? Though the surgery addressed an emergency condition in my plumbing, I continue to have 2 tumors growing in my lower pelvis (hopefully nothing new), and they also need immediate attention. Unfortunately, as soon as I went into the hospital, my appointments with MD Anderson were canceled, though they welcome me to contact them again after I heal. Fortunately (more help for me in the rough waters), the research coordinator at Sarah Cannon had reserved a spot for me in a trial that is set to open mid-April just in case. It turns out that this might be a life-saver. There is a possibility that my new physical condition might disqualify me. I humbly ask that you pray that is not the case and I can start treatment on April 17 as proposed.
Note: I had some communication problems with the folks at the cafeteria as I was transitioned from clear fluids to real food at the hospital. I didn’t care for any of the food options but somehow mentioned that I enjoyed the pudding. So, the tray in the picture above is what I was served for dinner on the 3rd night of my stay–three chocolate puddings, one vanilla pudding, and one vanilla ice-cream. I can’t believe a grownup thought it appropriate to serve that to another grownup. Not that I care, but I guess Bill Cosby would be pleased…