My crew loaded me up and, after a quick stop to coffee up with our friends and supporters at Hyde Perk in Hyde Park, we headed to Utah Sunday morning for my early, early Monday, October 14, 2019 appointment with my amazing surgical oncology team. Jo drove as Kelsey, Ben and I rode along. Ben slept and Kelsey messaged and worked while Jo and I talked.
We planned for this day for several months. Kelsey, Jo and I collaborated on much of the adventure and Kelsey did a great job of checking off the details despite our not knowing what the outcome of surgery would be. I focused on a will, a living will, getting contacts and information, passwords and accounts organized for Jo and Kelsey, as well as any final details about what I needed covered around the house and working with Kelsey’s husband Noah who offered to help with things like care for my cat Charlie and checking on Jo’s house and her cat Blackness. The process was a bit daunting and humbling. Not to be morbid, but It became clear I was planning for the worst possible case scenario, my demise, while intentionally staying as positive as possible.
The 345 mile drive drive was peaceful, Jo and I were contemplative about what lied ahead.
Once we arrived in Murray, Utah, we picked up Kelsey’s rental car and went to the local iHOP to eat and catch up. Chicken and waffles ruled the day for Ben and Kelsey. I had a milkshake because I was already well into the required 24 hour pre-surgery liquid fast.
Then we headed up State Street and checked into the AirBNB house that would be Jo and Kelsey’s headquarters for the next 10 days or so. After we got everything unloaded we were off to go grocery shopping at the nearby Kroger’s to stock up for the week. Jo and Kelsey are both healthy eaters and were quite the foraging team.
It was clear Kelsey had put a lot of thought into how the next 10 days of food and activities would work. And it was great she got her discount on all of the Kroger brand products thanks to her husband Noah’s job at Fred Meyer’s.
And even luckier for them they both really do great shopping. And they like many of the same types of food. I felt very blessed and at ease because Jo and Kelsey were on the same page and were enjoying their time together.
I knew I would be entirely absent mentally and physically the next few days and longer. I was prepared emotionally and pretty confident that whatever happened Kelsey would be in good shape with Jo’s steady, caring and loving heart there to help her. I know how much Jo has come to care for my kids and for me. It’s evident from what I’ve seen and from how she interacts with both Ben and Kelsey.
I was the bugler during my time in Cub and Boy Scouts. I played the trumpet and most brass instruments during my grade school days and Reveille still pops into my head when I know I have to get up and going early. So it was at 5AM in Murray. The four of us got up, showered and dressed, loaded into the cars and headed to Intermountain Medical Center.
It felt like time stopped once we got to the waiting room. I don’t recall exactly when we finally got checked in and when the beeper went off to call us into pre-op… it seemed like hours. Pre-op went smoothly and everyone got the “what, when and where” instructions about surgery and how post-op would work. Here’s where I went off on my own – after meeting with the anesthesiologist, getting my sensors glued on and a quick conversation with Dr. Griffin; Jo, Kelsey and Ben were sent packing. It was going to be a very long day for all of us.
Next up was being wheeled up to the surgery floor. Once inside, the orderly parked me in an alcove across from my surgical suite. As I lay there, I could see the techs, nurses and activity going on inside. I also saw a couple of my surgeons including Dr. Ferguson. He had a freshly shaved head and seemed to be pacing. Considering he was super clean cut and dapper when we met in September, I was pretty amused by the change in his appearance. Dr. Griffin stopped by again with words of encouragement and confidence. Then it was time. The surgery suite was super busy and there were literally shelves of instruments. Once moved onto the table the anesthesia started, we joked around a little and then all was darkness.
I remember thinking I saw Jo, Kelsey and Ben for a few seconds in a dark room. What I remember is so vague I still can’t tell if it was real. In fact, what happened was unreal. That story will have to wait for another time. Then more darkness. I remember seeing Jo again after that but again, I don’t know. I was told she had spent the night with me the night after surgery in the ICU.
The first time I really remember anything is when I was transferred to the surgery patient floor. Mostly because I remember a window. From what I can tell, I was moved from the intensive care unit to the surgery patient floor on about the 3rd day after surgery. Very fuzzy.
Pain management was a big concern. Dilaudid, which I found to be really nasty and strange, was provided intravenously at first and then on demand using a “pain pump” which I controlled with a button. I think I mostly slept.
Eventually I became more or less aware of my surroundings, but time was still a vague notion. I remember Jo and Kelsey coming and going and the dilaudid gave me hallucinations. It was like a flashback to the 60’s. I remember thinking Jo had purple hair and I became more disoriented. After I told a nurse I was seeing things like pink in the ceiling tiles and the wall was the ceiling, we collectively decided dilaudid wasn’t a good fit for me. I went on liquid Tylenol instead administered through me new feeding tube to avoid the graft that was healing in my throat. I couldn’t eat or drink anything orally as it was and my dry mouth was insane.
My little friend and cancer spirit animal the Sasquatch arrived from Boise thanks to Casey and the crew at Idaho River Sports. I am constantly reminded that I have many friends supporting me on this journey.
The Long Recovery
In addition to pain management, the recovery process required me to be able to do a few simple things on my own like getting up to go to the bathroom.
By day four or five I was about ready to handle the pain, my “puffiness” had started to subside and my catheter was removed. I started out with a bottle and then started working on sitting up with help from staff, Kelsey and Jo.
With 112 staples in my neck, chest and belly, a new feeding tube, sensor wires and IVs, the logistics of moving around were mind boggling and painful even with help from Jo and Kelsey. Going to the bathroom was a major activity and one of the more traumatic things I would experience. My new plumbing extended from the back of my throat to below my belly button. Getting my new bowel arrangement working right was a chore as feeding through my tube began. One of the treatments for constipation was a a couple of doses of milk of magnesia. This literally back fired in a big way sad to say.
Recovery included activities like physical, inhalation and occupational therapy. I became more aware of the daily and nightly visits from my surgical team and their staff. Around the clock care meant around the clock blood draws, feeding bag changes, IV changes, blood tests and more. I also learned I had a collapsed lung, afib or atrial fibrillation and my insulin levels were out of whack.
Jo and Kelsey moved in and out of the room and around the hospital with ease it seemed. They were truly more like hospital auxiliary and even had a badge for access to different areas so they could get food and things they or I may need. Most of all they were there for me in ways I wouldn’t have imagined before surgery.
By my six day or so, I was starting to walk around pretty well and my doctors were thinking about letting me eat and drink orally. My mouth and tongue were coated thickly and I’d brush them as often as I could with little sponge brushes. I was more or less regular, but getting up 4 or 5 times a night to hit the bathroom.
I’d been waiting for an awfully long time when we finally got an order to have the long awaited swallow test. The swallow test involved swallowing a barium drink while the operator records the flow into and through the throat and down the “food tube”. In my case it was mostly to see that there weren’t any leaks in the juvenal or intestinal graft at the back of my throat. Above is a video of a typical swallow test.
As it was, and because of the nature of the surgery, getting to the point where I could eat was a pretty big deal. Swallowing safely through the jejunal graft in my throat was paramount for my recovery. If the graft failed it may be fatal.
Not only was the surgery necessary to get rid of the cancer that had advanced through my esophagus and stomach, my only option for eating was using a 48 cm length of my small intestine as a replacement. Crazy cool medical science.
I had lost allot of weight by the time we were anticipating being released and I was pretty weak. Eating and drinking lifted my spirits and being able to get up without as much pain was good. I was wobbling around a little with the help of Jo and Kelsey and my physical therapists.
By this time we’d got to know many of my wonderful caregivers by name. Charlie, one of our favorite nurses, stuck with us on her shifts as often as she could. Others like my ICU nurse Derek, nurse’s assistant Uri and my inhalation therapist became regular visitors. Their encouragement kept all of us going as my recovery picked up steam and my mood would swing from pretty good to dismal.
While I was getting mentally and emotionally ready to go home, I just wasn’t ready physically. My doctors were holding on to me to make sure I would survive outside the hospital. My daily and nightly weigh ins, blood draws and vitals would continue.
Kelsey was working hard to stay on top of her job responsibilities as best she could as well. It was clear there was some stress developing as I approached 10 days in the hospital. Then we got a break and the doctors announced a plan. I would be discharged on Friday, my twelfth day as a patient at Intermountain Medical.
My discharge wasn’t without some unusual conditions and much caution. Dr. Griffin’s team asked us to stay on in Murray near the hospital. If all went well over the ensuing weekend, I would be released after more tests and an appointment with Dr. Griffin’s Physician’s Assistant Sarah M. the following Monday. While we were getting ready to end my hospital stay, Jo ran back to Boise on Thursday and would return to Utah on Sunday to be on hand for my release.
Kelsey made the arrangements for our move into a motel near the hospital for the weekend. She made a grocery run and did her very best to help me be comfortable. Just like in the hospital, I was up and down all night. The bathroom visits seemed endless and it was apparent my “adaptation” to my “plumbing” would take time. In the end, our stay was uneventful, Jo came back on Sunday and I passed my tests on Monday and said good bye, for the time being, to my surgical team.
I was finally homeward bound in time for Halloween.
Up next: Home & Rehabilitation
The next steps would be more recovery, rehabilitation and getting healthy for more chemo therapy at St. Lukes. The road to beating my cancer had hopefully become that much shorter with the big surgery behind me.