Agony & Ecstasy
On November 3rd we were readmitted to the hospital to start the transplant process. On November 29th, we were released. Freedom, sweet freedom.
The first week of the stay was filled with anxiety. I underwent a 4-day treatment course of chemo (Flu-Bu) to both clean up any stray cancerous cells and to permanently eliminate my immune system. What an intimidating prospect. It was a point of no return that no matter how it was explained or rationalized, never sat well. Besides the anxiety, I tolerated the chemo well with limited nausea. Dani and I kept a strict workout regime in the month prior to my re-admit (daily walks, light core work, resistance bands) so I felt healthy. I tried to carry it over to the hospital with daily laps around the BMT unit ("Blood and Marrow Transplant" unit) and resistance band work. It wasn’t much but it was something to keep me occupied.
(Above: Matt and his mom doing his daily exercises around the BMT unit during one of our previous hospital stays.)
Week 2 was punctuated by my bone marrow transplant, also known as my new "birthday" or day +0. After my sister spent a day in the apheresis lab having her white blood cells harvested and concentrated, I was given a 70 billion cell transfusion. The bag was about the size of my hand—smaller than a normal transfusion. My wife, mother and I sat quietly watching the bag drain over the course of an hour. It was difficult to rectify something so critical to my current and future health being so anticlimactic. I celebrated by taking a nap.
(Above: Keeping in line with the "anticlimactic theme" of the transplant, the stem cells arrived in a little cooler/chilly bin.)
(Above: The nurses wrote "Happy Birthday" on the board the day of Matt's transplant.)
(Above: Matt's celebratory post-transplant nap!)
My doctors celebrated by putting me on quarantine. From this point until my new immune system blood counts recovered to a safe level, I was trapped in my room. The expectation for the week was for my blood counts to taper off and then bottom out for a few days prior to my transplanted immune system showing up. Somehow, that valley of neutropenia was much shorter than expected. My immune system hung on for about 5 days longer than expected. While I worried that my chemo doses might have been miscalculated and something might need to be re-done, my doctors were ecstatic that I wasn’t so at-risk for infection. I was mockingly told that I was the healthiest person on a floor of a cancer ward. Who was I to complain? Unfortunately, my streak of good luck/minimal complications came to an end.
A few days after my transplant, my tongue started to swell. It looked ashen with solid white ridges outlining the inside profile of my teeth. I had the early stages of mucositis. It’s a common side effect of chemo where the fast growing cells in your mouth and digestive tract are killed off as by-catch. My tongue got more and more swollen and tender, as the mucositis set in and then migrated to my throat. My throat was raw and swollen and incredibly painful. Eating, drinking, talking and swallowing became too painful. My body started producing thick saliva that was constantly choking me. For nearly a week I tried every pain medication available to me (lidocaine, tramadol, oxycodone, morphine and dilauded) but to no avail. At night I would try to sleep slightly inclined to minimize my choking but could never get more than an hour of shut-eye at a time before I awoke in a coughing fit. My diet deteriorated from normal hospital food to applesauce and oatmeal to popsicles to nothing. Everything hurt and there was a constant parade of doctors and nurses asking me to describe the problems which was just as painful. They all promised that it was a common side effect and that it would pass as soon as my new immune system took root. I was in such pain that the words rang hollow and I found myself in a pit of enmity.
In an attempt to speed up the healing process, my doctors prescribed Neupagen—an immune booster shot. My body responded with fevers over 105 degrees. That landed me in the IMU (not quite as serious as the ICU but more oversight than the BMT unit) for a couple of nights.
(Above: Matt being transferred to IMU.)
(Above: Matt in IMU during the worst of the mucositis. Note the very full IV tree and the many pumps.)
Between the pain of my throat and the lack of sleep, I remember very little from this stint. After a few nights, I was transferred back to the cancer ward. Only once I got there did I realize how weak I had become. It had only been two weeks but I was already having difficulty getting to the bathroom on my own, getting out of bed without straining, or standing for more than a few minutes. It was also around this time that my throat and mouth started to heal. It was difficult to eat but I could get a couple of bites of oatmeal or yogurt or applesauce down before the pain became too much—still, I was eating.
A funny thing happens when you start to recover. The prospect of getting released begins to loom large on the horizon. While this is a good thing, the 4 weeks of institutionalization fights against your better instincts. It’s like Red’s soliloquy near the end of Shawshank Redemption: institutionalization gets into your brain and becomes comfortable and safe. The prospect of leaving that predictable schedule and care is unnerving. But life is not lived in a hospital. Scary as it may be, I was going to get out and sooner was better than later. Every additional day in was a day that I wasn’t rebuilding my strength, or eating real food, or sleeping in my bed next to my wife. And that was the real toll of being in the hospital; it was really difficult to keep our relationship balanced. The constant bombardment of doctors, nurses, cleaning people and other staff meant that I had nary a second to myself. I found myself annoyed at any attention and desperate to be left alone. I withdrew emotionally, matching my physical isolation.
In the evenings, Dani would climb into my bed with me and we would watch comedies on Netflix. This routine started in Coeur d’Alene and was our chance to discuss our feelings, fears and hopes. It was how we measured each other’s stress, gave each other support, and built up our relationship in the face of a massive challenge. However, at the end of my stay, my painful throat and dark attitude made me irritable. I would sit silently, barely acknowledging her effort to bring me popsicles and smoothies, or give me head massages. Communication has always been our strong suit but now I was shuttered in my house of negativity. We started meeting with a psychologist regularly to try and talk things out. It helped. Even if there weren’t always solutions, at least there was dialogue.
And then it happened. Our Physician’s Assistant, Lindsay, let us know we’d be released the next day. My blood counts were up, my fevers were down, and I was managing food and liquids. The following morning Dani went down to the discharge pharmacy on the second floor and picked up a sack full of drugs for me. I had never seen so many pill bottles in my life.
(Above: Some of Matt's drugs when they were delivered to our outpatient housing unit.)
(Above: The chart we created to track all the various drugs that Matt needs to take each day -- which, just to make things confusing, can also change from day to day.)
We decamped from our room in the early afternoon and were escorted out with a cart full of our junk.
(Above: The IV machine finally disconnected from Matt. We moved it across the room -- as far away from us as possible.)
The nurses on our floor gave me a really nice card and begged me to never return. I was choked up and could barely talk.
We made our way to the front of the hospital where we posed for a quick photo and then continued to our car.
Once in the car I broke down and cried. I sobbed. Four weeks of apprehension, fear, boredom, frustration and pain poured out of me. Dani and I hugged and then headed home.