In my last timeline post I ended off of August 24th, which was the date that I was discharged from the hospital and got back home, so we’ll kick things off from there and take it up until my most recent infusion on October 5th. Let’s get right into it!
August 25-26 - It felt pretty amazing to be home, sleeping in my own bed, without being attached to any monitors. Unfortunately, my upper back was still quite painful from the misstep I’d made the day before, which made me think I may have caused myself a new fracture in the same area as my last one, though not quite as severe. I also still had esophagitis (inflamed esophagus), which made it extremely difficult to eat or drink, but I was able to get down half a protein shake in the morning for some nutrition. The afternoon of the 25th, Courtney and I went back up to my oncologists office in Boston so I could have a meeting with my care team and get my second infusion of Keytruda (immunotherapy). Instead of driving back home in rush-hour traffic we’d decided to stay in a nearby hotel for the night. The following day, neither of us having slept particularly well, we got up early and hit the road back home. I had to make Courtney pull the car over at one point because I thought I was going to throw up, but mercifully the nausea passed.
Second infusion
August 27-31 - Much of my focus during these days was on continuing to eat and drink enough, despite the severe discomfort from the esophagitis. That symptom in particular was extending longer than I thought, so I was starting to get more and more frustrated about it. I had a follow-up call with the lead radiologist, who was not surprised about how long it was lingering considering the overall radiation dosage and large area that received treatment. It felt good to get some reassurance that what I was going through was normal, but that didn’t make it any easier to keep suffering through it each day. Getting into a new sleep schedule and trying to keep on track with my outputs (aka - poop, pee, vomiting) were big topics as well during this phase.
September 1-13 - During this timeframe my esophagitis resolved, which was a huge relief. I had assumed once that stage was over I’d be eating huge amounts of food and regaining all the weight I had just lost (about 30lbs), but I found that I didn’t have much of an appetite. It’s unclear how much of the appetite suppression was due to the medications I was taking versus the back pain I was dealing with. It didn’t help that I occasionally had some nausea, which I was mostly able to treat with the antiemetics Zofran and Compazine, though I did get caught out a few times and vomited unexpectedly. Let me tell you, vomiting with broken vertebrae doesn’t feel good at all - 0/10, wouldn’t recommend. The pain from the broken vertebrae manifested itself as acute, stabbing pain, mostly near my left shoulder blade.
Over these few weeks I also tried weaning myself off of the walker that I was using to get myself around the house. I noticed that I was quite sore the for the first days after not using it, which really showed me how weak my body had gotten from being so bedridden while in the hospital. Over time, though, I was able to become less reliant on the walker to the point where I stopped using it entirely. I tended to find that following days where I’d be more active I’d be extremely sore and fatigued for the next day or two and need extra time for rest and recovery.
September 14 - 28 - On the 14th I was back in the office to meet with my care team again and receive my next set of infusions. I had a nutritionist meet with me to try and give some tips for what and when to eat to help gain some weight back, but I found that my lack of appetite was so overwhelming I often couldn’t comply with her recommendations. This two week stretch was extremely difficult for me, with most days consisting of strong upper and/or lower back pain, severe fatigue, and random bouts of nausea and vomiting. I had a couple of decent days mixed it, but overall it was a very frustrating time period. The pain in my lower back got bad enough that my palliative care nurse had me bump up my pain medication to help me get through my days without being completely miserable.
Third infusion
September 29 - This was the day of my long-awaited kyphoplasty procedure, which I’d been hoping to have scheduled since I was still an inpatient, but apparently it’s very difficult to get an appointment with Interventional Radiology (IR). The purpose of this procedure was to address my upper back pain that was caused by the compression fractures in my T3 and T4 vertebrae. The T3 fracture being the one from the pothole on August 3rd, and the T4 being the one from me misstepping off the stairs when I got back home from the hospital on August 24th. My dad and I got to the hospital in the late morning and ended up sitting around for hours before the IR team finally got me in and going. I was glad to hear from the anesthesiologist that they’d be putting me under instead of doing the procedure with local anesthetic only. Before I knew it I was in the operating room inhaling from a mask and then it was night-night for Will. An instant later, I woke up in the recovery room with someone gently touching my forearm and saying my name. Fortunately, I recovered well and the doctors said the procedure went smoothly, without any complications.
September 30 - October 4 - The day after my procedure was rough, with severe lower back pain, unrelated to my procedure the day before. I did have a bit of soreness in the upper back where the procedure was performed, but it was minor and went away without issue in just a few days. I found that my throat was quite sore as well, after having been intubated, but fortunately that only lasted a few days, unlike the esophagitis. On the positive side, as hoped, the acute pain in my upper back disappeared almost immediately as a result of the kyphoplasty, so that was a huge win. The rest of this timeframe was a real mixed bag. One day I was feeling good and walked over 500 meters around the bogs near my home, but I paid for it the next few days with lower back pain and fatigue once again.
October 5 - I had another meeting with my care team and received my fourth infusion. During our conversations, my care team were happy with how well the kyphoplasty seemed to help but expressed concern with how the rest of my body was doing. It was agreed upon that I would bump up my pain medication once again until we could figure out what was going on with my lower back and hopefully get a care plan in place for that. There was also quite a bit of concern about my weight continuing to drop, now down to around 126-127lbs, so greater emphasis was put on me to eat, even when I didn’t feel like it.
Fourth infusion
As you can see, it’s been a bit of a rocky road for me over the past month or so. I was expecting the healing process to be a lot more linear but in reality it has been anything but that. For every good day I’m having there are usually two bad ones behind it to bring me back down to Earth. It’s hard to understate how extreme my fatigue can be at times, going from feeling totally awake and fine to falling asleep sitting upright in my chair within minutes. My loss of appetite and weight has been a big challenge for me as well. As many of you know, I absolutely love food and eating, so having no real desire to interact with food at all has been a bit disorienting and sad for me.
It’s been a huge relief to have gotten rid of my acute upper back pain, but addressing my lower back is my next hurdle to clear. I’ll be getting some imaging done soon to hopefully identify the cause and fix it, but until that happens it seems I’ll continue to battle that day to day. Sometimes it’s a mild annoyance, but others it’s an inescapable drip… drip… drip… of dull, relentless pain that can’t be improved by anything at all - the only hope is for sleep to come and give some temporary relief. I sincerely hope that by the time I write the next one of these updates I’ll have a bit more positive news on how I’m doing. Until then, I’ll do my best to keep my head up and my feet moving forward. Thanks again for everyone for the check-in messages and warm words of support along the way - keep ‘em coming!
