“The unusual thing is that you’re still alive.”
This is what my colorectal surgeon said to me last week as I sat upon an examination table with my head bowed down, trying to process the various symptoms I continue to experience since the surgery last month and how they impact my treatment options going forward. I believe I had commented on how unusual it must be for me to have had surgery to address the complications caused by my one, known fistula only to continue to experience symptoms as if there is another one somewhere, though neither the surgeon who has looked inside my pelvic cavity, the urologist who has looked inside my bladder, nor the images from recent CT scans can locate it. He confessed that his response was meant to change the direction of our conversation, at which he was successful, but I think he just wanted the anonymous fame of being mentioned in the leading paragraph of one of my blog posts. At this he was successful, too.
I’ve received a few messages from friends and family the past week wishing me well on the clinical trial I was to have begun on the 17th, but, alas, it wasn’t to be. Unfortunately, because I continue to have plumbing/intestinal (whatever you prefer to call them), I had to give up my spot on the trial. It is critical that we address the physical issues in my gut first, before I can think about treatment options. As it is, I’ve now been off treatment of any kind since the end of February, and it can be argued that I have not received any effective treatment in well over a year.
Thus it is worth repeating, “the unusual thing is that you’re still alive.”
People naturally ask me how I’m doing. Part of me wants to lie and say that l feel great, at least so I can make those asking feel better, but the truth is that these past four months have been the most difficult of this entire battle. It’s probably a toss-up between what is worse– how my body feels or watching my children watch me suffer. My heart goes out to those who must watch their children suffer.
Those who know me or have been reading for a while will recall that back in April of 2016, I headed out to MD Anderson for the major surgery of having my pelvic tumors removed (note: they were much smaller then), along with my bladder and anything else affected by cancer. I’ve told the story about how this surgery was aborted when the surgeon discovered “cancer seeding” throughout my abdomen (I was told to imagine someone blowing a dandelion, with the seeds being tiny cancer nodes). At that time we were also aware of diseased lymph nodes present in the chest and shoulder areas; these would shrink in response to treatment, allowing a window of time for surgery but would grow again when off treatment for an extended time. So, it’s also unusual that my Athens-based colorectal surgeon has had me on the operating table twice since that failed operation in 2016 (most recently last month), and he hasn’t seen any evidence of that cancer seeding. What’s more, no CT scan has shown the presence of enlarged lymph nodes anywhere. Thus, according to what we can best conclude as of four weeks ago, the only place in my body that has discernible disease is the area I call the “sewer”, the rectum and bladder where the primary tumor, now quite large and troublesome, exists, as well as the fistula that connects them.
Could it be that the immunotherapy cured me of microscopic disease above my belly button? Now that would be highly unusual. Medically speaking, we make decisions based on what we know (or presume), but faith sparks hope and wonder in a good God who is at work in big ways in our little lives, which ought to embolden us. And so the big, major surgery is back under consideration.
Now it is a matter of getting my medical teams in Athens, Nashville, and Houston on the same page, work that is mostly on me to push via portals, emails, phone calls, and even texts. The immediate concern is the apparent presence of a second fistula or other undiagnosed problem, which must be addressed immediately. Thus, I will have surgery (yes, another surgery) on Monday, April 22, my 24-year wedding anniversary, in Athens that will, hopefully, alleviate my current symptoms, or at least give me some relief. Meanwhile, out in Houston at MD Anderson, good people are working to align the schedules of my colorectal surgeon, urological oncologist, radiation oncologist, plastic surgeon, and the one operating room in the hospital that supports the type of surgery that I need. This is no simple matter, and there may not be an available date until late May or June. But I’ll first travel there on May 9 for MRI and PET scan to ensure that what I said in the previous paragraph (no sign of disease in distant locations) holds true. If so, we will schedule and proceed with the surgery that is officially called “pelvic exenteration”.
It is too bad I can’t have just the one surgery in Houston, but the timing just isn’t right. Thus, I have to have two surgeries.
To close, April 17 came and went without my beginning a new therapy, but there was another date that came and went, and that was April 11– the birthday of my twin daughters and, as I’ve mentioned before, the anniversary of my cancer diagnosis. It has now been six years of surviving and thriving against the odds, my family persevering. So, while I was in the middle of this crazy health planning, I had the pleasure of driving with one of my twins, Caroline, so she could get her drivers license. True to her over-achiever self, she scored a 99 (I told her there was an automatic 1 point deduction for being female, haha). These sorts of milestones make my wife cry. The aging of our children and their increased independence points to the fact that one day they will be leaving home, like our oldest, Joy, will sometime this year after she graduates from high school. And next year our youngest, the baby boy, golden child Owen, starts high school. I understand the tears. But, as I told a friend of mine yesterday, because my life is so threatened, I have a unique outlook on these events because I’m thrilled to have survived long enough to have shared these moments with my children. As anyone with a chronic, deadly disease knows, you are aware of the events that you just don’t want to miss, and so being there provides extra joy, a sense of accomplishment. “I made it, dammit!”
I still have some hard days ahead of me, and I don’t know what to think about being off treatment. It’s not like I’ve pretended to have any control over my health in recent years, but at least I felt like I had backup medical plans. Now it seems I don’t. So, now more than ever, either willingly or unwillingly, I must accept that everything is in God’s hands. And, as ever, we appreciate and covet your prayers. My big hope is that I’ll visit with my doctors next year, and there won’t be anything for them to do. Now THAT would be unusual.
The featured image is a recent pic of my twins, Caroline and Samantha, Chocolate and Vanilla. As twins go, these two are pretty unusual, too.