Well, that didn’t work. As I’ve written previously, I took part in a phase 1 clinical trial at the drug development unit at Sarah Cannon Research Institute. We began on Nov 30, and I was essentially a human guinea pig for several weeks. In fact, we had to travel to Nashville for 6 straight weeks, sometimes more than once. From Nov 30 to Feb 4, I swallowed 8 pills a day, dutifully logging the dose time, and complying with the 2 hour fasting rule around the morning dose. In the beginning I noticed some changes to some of my “plumbing” issues — some better, some worse — which I knew was a sign that the drugs were working or that the cancer had made further progress with its frighteningly steady, horror-movie-psychopath pace to overcome me.
Feb 4 was THE day for this trial. I had an MRI of the pelvis and a CT scan of chest and abdomen (for those curious, strangely, the rather large tumor that extends from rectum to bladder does not image well with CT). It’s worth reporting the good news of the report — the CT scans show no sign of disease spread. I appear clear above the belly button, which is good and I hope significant (more on that later). The bad news is that the MRI revealed that the primary tumor has grown a bit but also that a smaller nodule nearby also grew. I’m not talking massive growth, but growth that nonetheless indicates that the drugs in which we had placed our hopes are not effective, at least not in this human (previous studies in mice demonstrated tumor shrinkage or death). So, that is the end of my participation on this study. More significantly, it means I’m off treatment again with active disease in my nether region. I hereby give you permission to hate my guts — I certainly do.
Where does this leave us? With very few exciting options. Sarah Cannon is probably the best cancer center you’ve likely never heard of, and they have strong relationships with drug companies around the world and so are a leader in clinical trials (consider that I was referred there from my doctor at MD Anderson). They have many studies ongoing that might help us, but, and here is where even the most patient of men might yell to the sky in frustration, because I’ve taken so many different drugs, I’m disqualified for most of these studies. I’m not suitable for the treatment because the measurements of the study might be tainted from previous drug exposure. Thus, based on information on some form, I’m regarded as an unworthy human subject, not as a real person in dire need of potentially life-giving medicine. Like cell or media services, it’s as if there’s a special, introductory promotion that is only available to new prescribers.
Trust me folks, “right to life” is not just an issue for the unborn and those on life support. I don’t know much about the “right to try” bill, but something needs to happen here. But I digress, I suppose.
This morning I was sent an email from the very helpful trial enrollment research nurse explaining that I could not participate in the study that my oncologist and I had excitedly discussed on Monday after the results of the MRI had been revealed for the reasons I mentioned above. Instead, there is a study that appears promising, but the catch is that I’d need to go to Nashville for 1-2 days for 48 straight weeks, provided I can withstand the treatments, which apparently have some serious possible side effects. Kim and I were exhausted by 6. Xanax anyone?
A schedule like this would obviously affect my work, but I’m not going to go into that here, not yet anyway.
When Kim and I arrived home Monday night, we had a family meeting with the kids. We discussed the future, we prayed together. There were a lot of tears. Each of my kids prayed something sincere, thought provoking, and encouraging, but Caroline broke my heart when she wondered aloud (I paraphrase) about the paradox of being thankful for something hateful and cruel (like cancer); such things can teach us much about ourselves, how little control we have over life’s circumstances, how much we need a savior, and she was sure to mention how glad she is to have one.
Lord, my kids have learned so much, and they’re yours, not mine, but, sorry, I’m going to fight like hell to stay with them a long, long time. If Jacob wrestled an angel, I’m not going to stop wrestling this devilish disease.
Before I can begin a new trial, I must wait at least 4 weeks for the current drugs to be totally “washed” from my system. So, in the intervening time between now and the potential start of the next, I’m trying to make arrangements to visit my surgeon at MD Anderson. He’s the top dog who cut me open back in 2016 to remove the tumor and all diseased tissue, like my bladder. However, you may recall that he aborted and just sewed me up because he found “cancer seeding” throughout my abdominal cavity. In his opinion, I was in danger of being overrun with tumors if there had been any complications post surgery and, without any good treatment options, would probably have found myself in a much worse and life-threatening state. However, when I was forced to have another surgery in early 2018, the surgeon who operated on my here in Athens reported not seeing any sign of cancer spread. Add to this that the CT scans from the past couple of years have not shown any signs of distant metastases, and I wonder if he might consider trying again…maybe I’m dreaming…maybe I don’t know what’s best for me.
I’ve told this story before, but Kim thought it worth telling again. When I was in my 20s, a healthy, reasonably strong young man, I had decided to go for a morning swim while we were vacationing with friends at some beach. I swam out a bit and then, feeling refreshed, decided to swim back in to rest (I hadn’t gotten much sleep the night before). I recall ducking under a crashing wave, kicking a little forward, and then standing up to catch my breath. The only problem was that I found that I only had a brief second to breathe and was then pulled backwards into another wave. This happened repeatedly for a few minutes until it dawned on me that I was running out of strength. I wondered how many more waves I could take before a final wave would push me under and I would take a last deep breath of salt water.
Fortunately, my brain kicked in and told me I was in a riptide, and I swam parallel to shore and made my way out. If memory serves, after telling my friends of my harrowing, near-death experience, I was asked if I wanted to throw the Frisbee. Ah, to be young.
But in this battle, I feel beaten down so often, my body hurts and I’m so tired, and I find myself having lost interest in many of the things that used to excite me. I can’t help but wonder how many more waves I can take. On that day at the beach, my friend Nilesh was in sight of me, walking along the shore, but he couldn’t hear my call for help. He must have been too busy looking for shark teeth. These blog posts, I guess they’re my call for help. Can Kim and I leave our family for a few days for 48 weeks w/out the support of our little village? No way.
My friends and family, the greatest thing you can do for us and for anyone who is struggling, really, is to provide encouragement. Yes there are meals and rides, etc, but nothing beats a text, a phone call, or a visit. And we, in turn, will encourage you, if we are privy to your needs. Wherever we’re going with this life on earth and what comes after, I know its meant to be enjoyed and endured as a community. So don’t be afraid to call for help, folks. I need it. You need it. Our world needs to witness it.
“Come, Mr. Frodo!” he cried. “I can’t carry it for you, but I can carry you!”
― Samwise Gamgee, in J.R.R. Tolkien’s The Return of the King, when Frodo had lost all strength on the slopes of Mt Doom and Sam, forbidden to touch the One Ring, picks up Frodo instead and carries him those last, difficult steps so Frodo could complete their mission.
YouTube Linkage: Sam carries Frodo
Oh, and the picture above is of the turntable that I FINALLY hooked up to my stereo upstairs, and I’m playing the Sandra McCracken album that I purchased back in May (Desert Albums – Album 10). I promised Kim that the ugly rack that I’ve placed in our living room is merely a “proof of concept”; we need to find something permanent. Also, it took me 30 years to build a large CD collection, and now I now need to start collecting albums. Ugh.