Surviving the First Months of a Bone Marrow Transplant

Bone Marrow Transplants are Scientific Marvels

Before getting any further, I need to explain some key concepts I was unfamiliar with, and please forgive my medical imprecisions. Bone marrow produces blood cells. Therefore, blood cancer is very much a bone marrow cancer. There are several ways to perform a bone marrow transplant. In my case, it was a stem cell transplant coming from cord blood. You receive the stem cells via IV. They settle in the bone, and after a while, they specialize as bone marrow. After some time, they start to produce blood cells. They have limited life expectancy, so blood is constantly renewed.

Surviving Those Terrible Months

Blackout: I am a Bedouin. My bone marrow was destroyed with Total Body Irradiation (Radiotherapy); The stem cells were injected into my bloodstream. Because of the radiotherapy destroying not only my bone marrow but my entire body, I was in tremendous pain. Morphine is the usual route. I blacked out for two weeks. I have vivid memories of living as a Bedouin during this time. Why did I pick a pastorally nomadic Arab tribe to live in a parallel dream? I have no idea. But this was real to me and is still stored in my brain as a life I had. Apparently, I became obsessed with infections and was begging for a new bottle of water after every sip to prevent bacteria from developing on the bottle. I have no memory of all of that, probably for the better. I only recall dealing with cereals as a nomad this entire time. When I returned to reality, nurses were the sweetest to me and never mentioned my insistence on the topic. Those people out there are lifesavers. I would not be here today without those fantastic nurses.

Morphine: Pain & Withdrawal. The pain was so intense and hard to describe. Even drinking water felt impossible as the esophagus is completely burnt (mucositis). At the same time, it was time to reduce the amount of morphine. Your entire body tells you “more morphine”, and you must constantly fight it. It hurts so much. You want it so badly. But you fight it.

Nutrition: A Slow Road to Recovery. Back with more awareness, I had to start feeding myself again. Liquid still hurt, but apple sauce was already the obvious next step. Ice pops became my best friends, as the cold soothes the pain in the esophagus. Then, solid food. That entire process took weeks. I was relying on food via IV for a very long time.

Patience: Waiting for the Bone Marrow to Kick in. From the transplant to the capability of producing my first blood cells, roughly two months passed. It was long. I relied during that time on blood transfusion. I was highly prone to infections (minimal white blood cells), to bleeding (minimal platelets), and had zero energy (minimal red blood cells). It is scary. Those months are high-risk. Anything starting minor can have dramatic consequences. I didn’t want to die at 24, but I had somehow to make peace with my mortality. Otherwise, I would have gone nuts. But patience is the mother of all virtues. For every blood test, you hope to hear from the doctor that the transplant is working. Every day, you wake up thinking about the time they will detect your own blood cells in your bloodstream. Every day, you hope for good and zero bad news and feel you have no control over it. Unrelated, it is worth noting that my new blood cells have a different DNA than mine since it comes from bone marrow that is not mine, making me a chimera (people living with 2 DNAs).

Pain is the New Norm: Nausea and stress were daily. Graft vs Host Disease was the new “game”. You are taking anti-rejection medicine. The more you take, the more vulnerable you are. The less you take, the more disease you have, ranging from rash, weight loss (even more!), dry eyes and bloated belly to severe consequences, including life-threatening ones. My knees had been incredibly in pain for weeks. No one could explain why, but they looked huge. The doctor removed the equivalent of one shot of liquid from each knee. The pain had gone away until now. In that process, I learned that everybody is human, and every patient is different, and a new case for the doctors. Unpredictability is very high, and many tests and trials are still happening to help patients.

Regaining a Tiny Bit of Strength: Beyond all of those challenges, I needed to be able to move again. Step one: sit on the bed. Everything hurts. Every day sees an improvement and a drawback. Step two: stand up. Oh boy, that was painful and felt impossible. We had to start with many drills to move my legs a little while sitting. Those skinny legs were definitely not up for the challenge and were very far from capable of handling any weight. That took time. Standing up was the hardest. Step three: walking, using a walker for the first weeks. As soon as that was practical, I was allowed to leave my room and take a shower. How to even describe that? The feeling of water on my skin, being out of the room after so long, I cried so much. I had been in an isolated room for so long, and being touched by friends was not an option because I have been very immuno-suppressed. At rare times, when a nurse grabbed my arm, I felt so alive. I learned the power of physical touch and the value of hugs that year. Water gave me that feeling. Every triathlon now, when I start in the water, it truly feels special.

A Few Months Later