Pow. You hit me unexpectedly in August. Blindsided me. Knocked 15-20 pounds right off me. I didn’t even know what you were yet. Slowly, steadily you chipped away at my strength and energy through September, October and into November. Visits to doctors in Kansas came up empty. I was told to go to the Mayo Clinic. They were just as confused as to who you were. Finally on the third visit over New Year’s Eve, they confirmed it. You were PTLD – Post Transplant Lymphoproliferative Disorder. Fairly rare, apparently hard to diagnose, but easy to treat.
By then I was struggling to get out of bed each day. Showers consumed my energy to the point I could barely stand afterwards and would lay down before even drying off. Walking from my bedroom to the kitchen to get something to eat required a rest before starting to find food. Then it was back in bed.
In January, the day before I was scheduled to meet with doctors at KU Medical Center and get my treatments started, I was told to get a blood test. Lisa and I went to Lawrence Memorial Hospital to get the work done. Afterwards we stopped in the hospital cafeteria for breakfast. After breakfast, I knew something was wrong. I told Lisa we needed to go to the emergency room. We decided to make the 45-minute drive to KU Med since that was where I was going to be treated anyway. She got a wheelchair and led me to the car.
On the way to the hospital I noticed my fingers were turning blue. Then my lower lip and chin went numb. My vision became extremely blurry to where I couldn’t make out cars and could barely see traffic lights. Then my legs began shaking uncontrollably. I became extremely thirsty and wanted to throw up.
As luck would have it there was a terrible accident on the highway with cars on fire. We came to a complete stop for exactly one hour. After we started moving, Lisa was able to get me some water and my symptoms regressed it seemed. We rushed to the hospital where they pumped me full of four bags of IV fluid and three units of blood. I was told I was nearly in septic shock.
After 11 hours in the emergency room they admitted me into the hospital where I would spend the next 10 days. I started my cancer treatments (one infusion a week for four weeks) and started to feel better.
A few days after my fourth, and hopefully final, infusion on Feb. 8, I started to feel pretty good. I still need to put on about 15 pounds and I am still very weak, but am making progress. I will be scanned in early March to see if the treatments were successful and I fully believe they were.
My family and I have been overwhelmed and touched by the support of people who have reached out to us during this time. Their generosity to help us with dinners, gift cards and financially has been extremely humbling. We are very thankful to everyone who even just asks how we are doing. That has meant a lot to all of us. Please know I am getting better and it won’t be long until all of this is just a memory.