Happy New Year, everyone!
I hope each of you had a restful, joyful time with friends and family. We certainly did, though there were a few memorable incidents.
In my previous post on 12/19/17, Time Stand Still, I described the issues that I’ve had with the last few treatments, where I have contracted a fever, chills, and severe headaches not long after leaving the clinic, and told of borrowing a blanket from the clinic on my last trip to wrap around myself for the 6 hour drive home from Nashville. I wrote about the frightening wrecks we passed on the way home, praying for the families involved, hoping lives and future Christmas seasons hadn’t been forever affected. And I shared about the very real hourglass on our bedroom desk in which the sand had mysteriously stuck and which I had planned to shake free after midnight on 01/01/18.
Well, I think my son jinxed us. Not knowing my plan (my kids don’t read these posts), he shook the sand free the night I posted, perhaps to celebrate the start of the Christmas holiday.
On 12/20 (the next day), I received a call at work from my very shaken daughter who had just wrecked her car. She wasn’t able to fully describe what had happened, and I can’t describe how my heart sank when I drove up to the scene and saw what remained of our 2003 Pathfinder. It was demolished, all around. The front, driver-side wheel had been snapped off. It was raining hard that day, and as she returned home from an errand at her mother’s behest to pick up our Christmas cards, she hydroplaned, losing control, spinning into the guard rail. Though the rail crumpled, she spun back around across two lanes of traffic and hit a concrete wall. If you’re driving down Hwy 441S, you can see the mangled guard rail on the right-hand side just as you approach the bridge to Hwy 53.
Besides the obvious emotion of finding my daughter unharmed, it was striking to find her in the back of an ambulance wrapped in a white blanket, identical to the one I took from the clinic. We took her to the hospital to get examined, and she’s absolutely fine. We only made a Christmas memory that day, thank the Lord.
As for me, well, blood cultures drawn from my port-a-cath, a small device under the skin that allows direct access to a vein, determined that it is contaminated with a variety of bacteria, which explains the chills, fevers, and headaches. It was installed in 2013, so I’ve gotten great use out of it, but, recently, when they infused drugs or flushed the line, the clinicians were pushing bacteria into my bloodstream, infecting me. Unfortunately, the attempts to kill the bacterial colonies with antibiotics have failed (I got sick again this week and the blood cultures drawn were still positive), and so I’ll have to have my port removed immediately and replaced eventually.
In other news, I celebrated Christmas by visiting the ER for the third straight year. I’ve spoken before about issues that I’ve had with my ileostomy, but I struggled over the holiday with being unable to pass food. It seemed to start with a hot dog from the UGA-Temple basketball game (perhaps the jalapenos weren’t a good idea), but I had a series of episodes where I would stop producing output, causing abdominal pain and related problems. This occurred 3 times until I was ultimately very dehydrated and, of course, concerned that I had a small bowel blockage. At the advice of my medical team, I went to the ER for fluids and to get a CT scan, which revealed “extreme inflammation” in the area of small bowel near my stoma. So, the good news was that there were no apparent signs of any blockages due to malignancies or adhesions, but I had to go on a clear liquid diet for a few days during the holidays.
To treat the inflammation, my oncologist withheld treatment on Wednesday and has put me on a course of steroids. This was the first time in over 4 years that I’ve been denied treatment, but they really want to give my bowels a break. It is not uncommon for immunotherapy to cause inflammation, and, typically, a break and some steroids clears it up. Hopefully, I’ll be back on the drugs the next cycle (Jan 15). However, she wanted me to follow-up with my local gastroenterologist. And so I did.
This morning a GI doctor performed a scope of the inflamed region of my small bowel in order to examine it for scar tissue, blood clots, or other issues that might have been missed on the CT scan. He saw nothing obvious, but he is concerned that the inflammation may yet be due to other complications. So, the plan is to go back on a liquid diet and see if the steroids can resolve the ileitis. I’ll have another CT scan on Monday to assess progress.
And here’s where things get complicated. If the bowel doesn’t heal on its own, I’ll likely need surgery to remove the affected tissue and reinstall the ostomy. But this time, the ostomy will be permanent. Currently, I technically have a temporary ileostomy because we had hoped to see the day when I was disease-free and could hook my bowels back together for normal function, but that no longer seems remotely possible. But if I’m to have a permanent ostomy, I’d much rather have a colostomy to an ileostomy (I’ll refrain from explaining), but to do that would require more complicated surgery, which is quite risky given the state of my disease; suffice to say that cancer cells just love to join the party where there is injury and healing.
This is a lot to describe and to process, obviously. And it’s complicated by the extended geographical area of my medical team. My current oncologist is in Nashville, and I haven’t seen my local oncologist in a year. The GI doctor I’ve seen recently is local and happens to be the surgeon who performed my initial colon resection back in 2013, but, technically, my primary surgeon, the one who installed the ileostomy in 2015, is the head of surgical oncology at MD Anderson in Houston, but I haven’t seen him in a year. I have to get these groups synchronized and, should the need for surgery arise, determine the best path forward.
One step at a time, though. We’re praying that my bowel heals. And I plan on exploring the many options for “whatever liquids you can tolerate,” as the doctor has prescribed for my diet for now.
Thanks for reading this long update. I sincerely appreciate your time, your concern, your prayers, your help along the way.