So how did that transplant go?

Sorry I have neglected my blog and left my dear readers at a cliffhanger.

I entered the hospital on Dec 18, 2018, for my stem cell transplant. I was warned it would be challenging, but felt more than ready and was deeply appreciative that I got to the point where I could have a stem cell transplant. A stem cell transplant was necessary for me because, without it, my cancer would return repeatedly, it would be worse each time. It is a Hail Mary treatment. I was told it would do damage to healthy cells, but the extent was unpredictable. My stem cell doctor said to me that “chemo is like special forces, seeking out and killing my cancer. Now we are going to burn down the forest, to make sure nothing is left”. My doctors told me my boosted chemo (125%) was nothing compared to what I would be receiving. Mega chemo bombarded my body for six days. There was no question of me having side effects from chemo; I would get them all. At the end of these six days, my stem cells in my bone marrow, my immune system would be gone. This vulnerability is why it was so crucial for me to be infection and cancer free. In this very vulnerable period, I was in danger of having disease or infections spread unchecked between my old and new immune systems.

It was a pretty harrowing experience. As forewarned, I had many side effects. I lost my hair again, and this time it has never quite come back to the way it used to be. I had mouth sores, so I could not eat and had to be on morphine. I have never been so completely debilitated. I remember asking one of my doctors about a symptom, and she replied, “you should expect bad side effects. After all, we are poisoning you with extremely toxic substances. We do not have much control over what they impact, so healthy areas are attacked as well.” At that moment, I felt the impact of both how very primitive medical science could be and also in awe of the new technology and drugs which were keeping me alive.

The day after Christmas, I received my new stem cells. There was not a good match for me, so I had to go with my brother’s cells that at least were genetically the same and a half-match. The transplant procedure itself was remarkably simple. A large metal container, which kept my new cells frozen, was wheeled into my room. My stem cells were in an IV bag. The nurse thawed my frozen stem cells in running warm water in the sink. This seemed very surreal and low tech. Then they were attached to my IV and slowly dripped into me over about 20 minutes. And that was that! Eight million new stem cells upon which my survival rested. Then the waiting game began. Labs were constant, watching for an increase in white blood cells. That would be a sign that the stem cells had grafted and were building a new immune system. I had a prolonged build. It was very nerve-wracking. We were also looking out for an immune system that was too aggressive and would start attacking my healthy cells.

After about eight weeks in the hospital, my body developed my new immune system to allow me to go home. I had a very long, slow recovery. After my transplant, it took months for me to walk, sit, read, write, and to start to function. Interrupting that recovery were frequent infections, which landed me repeatedly in the hospital in 2019. I had to get transfusions twice a week for many months to help the levels of blood components. My new immune system was not very strong because I had to use half-match stem cells. In October 2019, I went back into the hospital and received a boost of more of my brother’s stem cells. Just in time for a worldwide pandemic, this finally got me to the point where I could ward off infections.

So now I have unusual biology. I have a 1-year-old baby immune system inside a 60-year-olds’s body. I even have to get my baby vaccines all over again. My brother’s cells have completely replaced my old bone marrow and blood. I have a new official status. I am officially a medical Chimera. https://www.medicinenet.com/script/main/art.asp?articlekey=8905
I majored in Ancient Mediterranean Art History, so this mythical beast composted of different animal parts was familiar to me.

Today I have two sets of DNA, existing together somewhat peacefully. The DNA in my blood is entirely my brothers. The rest of my body is my DNA. I feel an irrational sense of loss, losing such a significant part of me. Crazy as it sounds, I slightly mourn the loss of my blood and feel a tad like a Frankenstein, a new thing patched together from different people that do not function entirely normally. But above all emotions, I feel gratitude. Grateful for my brother’s love and his never-wavering support in giving me a part of himself so I could live. I feel thankful to the extraordinary team at Northwestern Hospital that pulled off my science experiment. Grateful, I am here, have more time with my family and friends, and have new experiences.