It has now been 3 months since Jo and I returned home from Utah. I don’t remember much of the drive other than our stop at the Stinker in Burley. I was thankful to be headed home. Upon our arrival I came to grips with the fact my 16 year old cat Charlie had passed away while we were in Utah and the remaining problems left over from her still present in the house. I was thankful Noah had taken care of many of the problems and Charlie’s cremation while I was in the hospital. I was exhausted and working my way through a dense fog of surgery, residual from the Dilaudid opioid and weakness from weight loss.
In fact, I have continued to struggle with weight as I went through limited in-home physical, speech and occupational therapy. I remember each of the nurses and therapists but only vaguely recall what we did. I was able to walk a couple of blocks after 2 weeks of working at it with the PT folks and on my own with a cane. After 3 weeks I had graduated to 4 blocks. Each time out I would return home exhausted, freezing from the chemo side effect neuropathy and immediately go to bed.
The five biggest issues I experienced as I recovered from surgery were the pain from my incisions, discomfort with my new feeding tube, getting in and out of bed, eating with my new plumbing, weakness and dizziness. More on this later.
By the time Thanksgiving rolled around I was doing better with the weakness and was driving myself to a few appointments and working a little more. Jo was spending her time graciously attending to my needs as best she could while continuing to run her business and taking care of her friends and family. She’s amazing.
When it rains, look for rainbows
When it's dark, look for stars.
As Christmas approached and winter set in (again), my ability to move improved and other long term challenges began to emerge. It seemed to work out pretty well that my followup with Dr. Griffin was scheduled between Thanksgiving and Christmas on Dec. 10th.
Getting Ready for the Push for a Cure
After basically taking November off from the medical grind to focus on recovering from surgery, physical therapy and doing weigh ins, December was all about followups appointments and getting ready for the final (hopefully) round of chemo cycles.
My first followup was with Dr. Griffin in Utah. Jo and I decided well in advance that I could make the trip on my own. I decided to fly down in the morning, take the train (TRAX) to Intermountain Medical Center. My plan was to stop by my recovery floor and drop off cards for the nurses and staff, get my tests then go see Dr. Griffin and his staff, hop the train back to Salt Lake City, do a little shopping and then back to the airport on TRAX.
It all went basically as planned. The airport and train ride went like clockwork. I boarded TRAX at the airport, changed trains downtown and off I went to Murray with 1 stop. It was super quick and easy. Boise should be jealous.
But then again, I needed all the extra time I had to find my room and floor in the hospital. Evidently I had no idea where I had been those two weeks in October. I thought I was in building 7 and it was building 5 all along as I discovered after wandering around for over an hour. I did get to visit the hospital cafeteria where Jo and Kelsey took many a meal while they cared for me.
By the time I found my way back to where I needed to be for my blood test and x-rays I was running close to on time. Dr. Griffin patiently answered my questions and I offered to help any future super-charged jejunal graft patients in any way I could. We talked about his visit to Idaho to fish Silver Creek in the Spring and I bed farewell to my Utah surgical oncology team.
I hopped the train in Murray, got off at the wrong stop and walked way too far around downtown to my shopping destination Cotopaxi. I was relieved and excited to get headed home to Boise. Next up was a visit with my medical oncologist Dr. Alluri at St. Lukes.
As 2019 was coming to a close, I met with Dr. Alurri and his head nurse Sharon on December 20th. He expressed to me that he had wished I had let them know earlier that I was through surgery and recovering so we could get the next round of chemo cycles started. He obviously didn’t know I had contacted his nurse on multiple occasions to check in.
While there was a rush to finish 2019 with more chemo, I was blessed to be able to feel well enough to shop for my family, distribute gifts, enjoy time with my friend Jo when she wasn’t traveling to spend time with her family. The holidays were a time for reflection and enjoying the hospitality of my awesome North End neighbors before chemo started again just before New Year’s Eve.
The Push for the Cure Gets Complicated
Within 10 days of my appointment with Dr. Alluri I was back at MSTI, which had just been renamed St. Lukes’ Cancer Institute, for my chemo cycle. This cycle went as expected. Then things started going awry. The first problem I was experiencing was redness and a little blood around my feeding tube stoma… the hole that goes into the gut. It had been discharging much more than my first feeding tube and there was a bulge around the top. It felt like a muscle or something was pushed outward. Griffin had looked at this as well and was optimistic it was okay but to for me to keep an eye on it. I also discussed the stoma with my oncoloy PA Dustin when I went in for my bloodwork and in between chemo session appointment. Sharon Dr. Alluri’s nurse accompanied him. When I showed them the stoma I noticed a suture had come up through the stoma to the surface. Sharon cleaned up the stoma for me and taped it up.
The first major detour came when I went in for my second of four chemo cycles. I got in, did my blood work, met with Dr. Alluri and then headed to the chemo suite. We go in and were seated by Becca, one of the great oncology nurses. It was unusual for us to have wait, but wait we did. All of a sudden Dr. Alluri and Becca popped into the chemo suite. I’d not seen any of the doctors in the chemo suite before. He announced that my white blood cell count was too low and, with the issue around my stoma, we would postpone the session for a week. Crap.
We went home, after a stop at Flying M for coffee, and Jo headed to work. I continued to be concerned about the stoma and my feeding tube. Later that week Jo suggested I go to our doctor’s office to have them change the dressing and take another look at it. We were kind of having a bit of a crisis of confidence in our oncology team. Once RN Sharon’s dressing was removed, PA Jessica looked at it and we noticed there were now 2 stitches floating around above the stoma. She snipped off the stitches and I got a clean dressing and went on my way still experiencing discomfort but relieved to have the stoma cleaned up and stitches removed. The next day, as I sat at my desk working, I hear a little wooshing noise and kersplunk, my feeding tube dropped out of my stomach onto the floor. A little frantic I called chemo triage and eventually spoke with RN Kaitlin. We called back and forth as she discussed with others at the hospital if there was anything I needed to do or worry about. By the end of the day we felt relieved we didn’t need to go to the hospital but concerned I would be okay without a feeding tube to help keeping my calorie count up. After all, my weight was still 30 – 35 pounds below where I was when I had surgery.
The next big thing was my postponed 2nd chemo cycle the following Monday, January 20th. The routine went on as usual, IV insert and blood work, then an appointment. This time with Dustin. We talked about the stoma and the white blood count came back okay. I also spoke with one of my great chemo dietitians about food and feeding without the j-tube. I basically have to literally swallow hard and make it work.
Next up was chemo. My RN was, you guessed it, Kaitlin. We talked about the stoma and she got me comfortable as Jo looked on. I reminded her, as I had Dustin, that I wasn’t taking a drug that counteracts side effects from one of the chemo drug taxotere I’d had a reaction with in July 2019 and we got started. Everything went fine until the next to last of the six chemo drugs oxaliplatin was about half done and I felt my blood pressure rising and tingling in my hands, lips and face. I pushed the call button and the RNs jumped into action. My blood pressure had shot up to 213 over 96-ish. My hands and face were res, blood vessels popping and generally not a good feeling was spreading. This time wasn’t as painful as last year’s episode but dangerous nonetheless.
Kaitlin was on lunch but arrived while intravenous antihistamines were being administered. After a couple of calls into Dustin and a huddle or two, they decided to finish up and send me home. We also discussed the likelihood I may have to finish the remaining cycles “up on the 4th floor”. Dustin came in and confirmed this and Jo came and snagged me. Maddening.
As it is, we’re ready for a different round three of chemo next week. Jo will take me in to have my blood work and doctor’s appointment on Monday as usual, but instead of a 4 or 5 hour visit in the chemo lounge the same day, we’ll check in at 7am on the 4th floor on Tuesday. I’m scheduled for 7 hours. It almost always takes more time. Instead of a comfy red recliner I’ll be in a hospital bed.
Wish me luck!