Having driven countless times from Athens to Nashville since l began receiving treatment at Tennessee Oncology in the fall of 2016, Kim and I have developed a few routines. On our drive up, we consistently make the 316W to 85S to 285E to 75N leg without stopping until we reach Calhoun, where we pull off to stretch, potty, and grab iced lattes at Starbucks and fuel at RaceTrac, if necessary. On our trip home after seeing my health team and receiving treatment, depending on the time and our state of hunger, we typically stop for Chick-fil-A in Murfreesboro as we head out of Nashville on 24E or in Dalton once with make it to 75S. It’s safe to say that I’m mostly a man of routine, a simplification that helps to minimize stress amid a life that we must accept is rife with difficult circumstances out of our control, like the news we received at Sarah Cannon Cancer Institute last week.
As I wrote about in my previous post, on Feb 4 we learned that my cancer wasn’t responding to the drugs on the current clinical trial by virtue of MRI and CT imaging that showed that both the gut monster tumor and a smaller node nearby had grown. What’s more, I learned I was not a viable candidate for another promising trial as we previously thought and that the only other suitable experimental therapy available at Sarah Cannon was a new form of chemotherapy that would require our traveling to the Music City for 1 – 2 days for 48 consecutive weeks. I was accepting the news of that day as if someone had stuffed a handful of crackers into my mouth after a day-long trek through a desert and told me to chew and swallow without benefit of water. Kim would later characterize my demeanor as despondent. I think the voice of the Google Maps application spoke more words to us than we to each other before we stepped up to the counter to order a late lunch at a Murfreesboro franchise of the self-proclaimed inventors and undisputed kings of the chicken sandwich.
But something happened after we parked. It was either when Kim turned off the car or when I put my shoes back on, or maybe it was a face we passed or the mysterious power of the place itself, but I felt the man within me stand up again, a returning of confidence, which was first manifested when, instead of ordering a half-sweet Arnold Palmer, I asked merely for half-sweet Lemonade. Further, I pushed the prim and proper associate for extra pickles, which to every other restaurant in America means at least 10 but to this Chick-Fil-A, I later discovered, meant 2, but I was encouraged that my high maintenance was no problem at all—in fact it was her pleasure (imagine that!) to help. And then, when I walked to the condiments station, I grabbed napkins and straws but left the Texas Pete and Heinz “Dip and Squeeze” Ketchup packets in their cubbies. We grabbed a table, set our paper items down, and I excused myself to the men’s room. I can’t say if it was the shiny, greenish-brown tile above the urinal which became formless and then infinite as I stared blankly at a single point within its mortar boundaries that brought me back to myself, but when I returned to the table, I pronounced to Kim that we were going back to MD Anderson. There had to be other options. I was resolute. My mood had totally changed.
So much has happened in the past twelve days that I cannot write it all here, and I know, given my love of words, you might be just fine with a summary. Suffice to say, I found myself back in Nashville on Tuesday (the 12th) to be screened for yet another trial and then at MD Anderson at the end of the week for second opinions and future options, and Kim and I now leave for Nashville on Sunday, Feb 17 to start that new trial. It has been a busy week and a half.
As I have written, when I left Sarah Cannon on Feb 4, I had only the year-minus-four-weeks chemo option available to me, and I wrote a blog post about the current state of things on the 6th. There must have been some serious prayers raised skyward that night, because a lot happened the next day.
First, because I’m fortunate to have email-direct contact with my oncologist at MD Anderson, he was able to initiate with his and other groups scheduling arrangements for me to see a surgeon, a urologist, a targeted therapy specialist (experimental medicine), and with himself the following week. And once those emails began to be exchanged, I received an email from the Research Coordinator at Sarah Cannon informing me that there was suddenly a slot available with yet another promising study, one that is targeted (i.e. not chemo), won’t require as much travel, and I could potentially begin very soon. To paraphrase: “What?” I asked her. “That’s right, Mr. Weatherly, yesterday there were no slots available, but today I received an email that one opened up. You’d be the first person on this study at our site, but Dr. Bendell thinks it’s a good option. Can you come up Tuesday for some tests to verify that you are a suitable participant for the study?”
So, it was two flights to two cities last week, Monday-Tuesday to Nashville and Thursday-Saturday to Houston. It was kinda exhausting.
The Nashville visit was mostly non-remarkable. I had an echocardiogram early in the morning at Tri-Star Centennial hospital, and then, at Sarah Cannon, they performed a standard EKG and drew about 12 vials of blood (science!). The excitement surrounding this visit occurred after I had left, actually, starting when my phone rang just prior to my boarding the flight home. I recognized the area code of the phone call and thus knew that it was important, but, given my station at the time, I answered and spoke in a hush. Before I could respond, “can I call you right back?” there was a loud flush in the background that the research nurse clearly heard and comprehended, considering she cracked up laughing. Having endured that slight shame, when I called her back, the nurse explained that my hemoglobin was too low for the trial and that I needed to have the test re-performed the following day in Athens (my blood has been under attack from the previous therapy). Strangely, she asked me to do one unusual thing: just prior to the blood draw, make sure to run around a bit; for some reason this can bump up the hemoglobin (some things you just don’t question). So, the following day, I did as she asked, and the look on the nurse’s face at the Piedmont Lab Outreach center was priceless when I asked her to hold on a sec as I bolted out the door and ran up and down the sidewalk. The good news? It must have worked. My hemoglobin jumped back up, and I’m now eligible for the new study. The bad news? I leave tomorrow for Nashville again for another biopsy (Monday) and then drug dosing (Tuesday, 12 hours in the clinic). Here we go again. Oh, and the ugly news? I must have looked like I was running in wet concrete—I can’t move well anymore.
As for my trip to MD Anderson, we left feeling encouraged. We were most nervous about the surgeon, because, for one, he makes us a little nervous, and two, we were asking him to answer if surgery would ever again be considered to remove the disease in my pelvis. Well, we learned that the answer isn’t no. He thoroughly explained the risks and the seriousness of a surgery like mine, but he said he wasn’t opposed to it, given my survival and success with treatment since he first tried in 2016. He wants to see us back in 3 months when I’ll get a PET/CT, and then, assuming he likes what he sees, we can have the difficult conversation about whether to go through with it. I had a helpful conversation with the drug development group, and we discussed some possible trials down the road, should the one on which I’m about to embark prove ineffective. It was reassuring that both the drug development oncologist and my general oncologist agreed that the study I begin on Tuesday is one that they would also recommend. The only disappointing news that we received is that the surgeon and the urologist had little to offer in terms of helping me with some of my current physical issues, beyond just total removal of the diseased area, though the urologist prescribed a new drug that she hopes can help with some of my pain.
Finally, since my trip began on Valentine’s Day, I figured I’d end with the sweetest part of the trip, besides having fun and enjoying some time with Kim and my mother. The surgeon’s physician’s assistant is a woman who, up until Friday, I had only ever talked to over the phone. She was the first person I spoke to, and she basically asked me to tell her my story. And so I did. I think she was surprised by how healthy I looked based on all that I’ve been through (she said as much). The sweet thing occurred when she asked me to sit on the examination table so she could have a look at me. When she first put her stethoscope on my back and asked me to breathe deeply, she gave me the slightest but sincerest of pats, saying, “You’ve been through a lot. You’re a trooper.” Lungs having passed the test, she moved the stethoscope to the front to listen to my heart. She couldn’t possibly have noticed it, but I know that what she had said had certainly warmed it. These are the person-to-person moments in chronic health care that I treasure and that make it easier, and even worthwhile, to persevere.
And you know what? I really enjoyed the Chick-Fil-A sandwich with the extra pickles and without the Texas Pete; it was like reuniting with your first love.
** The photo above is of a caricature that was drawn of Kim and me on Valentine’s Day at the Hotel ZaZa. A framer. She looks awesome. And he gave me hair.