The good news is, and it’s excellent news, my cancer remains in remission, and I am no longer as infection-prone as I was the first year after my transplant. I am home, reunited with my sons, and can function at a basic level. Post-transplant, I very gradually regained some stamina and could do more and more.

The other part of my story is I have been surprised to face some increasing challenges in the past few months due to my chemo and stem cell transplant. One of them is called iron overload. I received many transfusions for quite a while after my transplant. With each transfusion came additional iron. This extra iron was not iron my body needed, and there is no way to naturally process the excess iron out of my body. I took a medication to help remove iron, but it started damaging my liver, so I had to reduce the dose. In the meantime, I began experiencing symptoms of iron toxicity, including chronic fatigue, joint pain, osteoporosis, and early-onset neurodegenerative disease. The last one is the real zinger. Whether it is because of iron overload, “chemo brain”, cancer survivorship, or some other source, my cognition has changed. It is not yet clear to what extent this is permanent. It is clear that I am no longer able to insanely multi-task and get tons of things done. Fortunately, I have lots of experience learning about accommodations and helpful tools to help me stay focused and on task. I become frustrated that I am not functioning the way I used to. There is also some neurological issue we are investigating, which impacts my coordination. I am getting frequent, painful Charlie Horses in my hands, legs, and feet. Hopefully, a solution is forthcoming.

This week I had the wind knocked out of me. I have been experiencing eye strain and redness, and I did not consider this a big deal. Perhaps I needed a new prescription for my glasses? My stem cell doctor surprised me by ordering a complete eye workup by an oncological eye specialist at UIC. I had many tests done and then met with the doctor to go over my results. He showed me a very enlarged picture of my inner, lower eyelid, and compared it to a normal eyelid. He pointed out that many of the glands in my lower lid were gone entirely. He said this was from chemo, and reversal was not possible. These glands produce oil on your eyes to keep them lubricated. So no big deal, I would have to use lots of drops. He then stained the surface of my eye and closely examined it. He showed me the resultant image of my eyeball. He told me everywhere there was a blue dot, that was a dead cell. He told me I had advanced ocular graft vs host disease. My new cells were fighting my old cells. It could be going on elsewhere too. “Graft versus host disease (GvHD) is a condition that might occur after an allogeneic transplant. In GvHD, the donated bone marrow or peripheral blood stem cells view the recipient’s body as foreign, and the donated cells/bone marrow attack the body.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770225/
I thought we were past the point that this would be a risk. The blue dots were everywhere. My body sucker-punched me. He told me it was severe but also hopefully treatable. He said to me if the treatment was unsuccessful, I could go blind. I was stunned and devastated. I was too focused on the possible adverse outcomes. Physically and emotionally exhausted from the last few years. I did not feel I could cope with this news.

I have started my treatment using 5-6 different eye drops, 15 minutes apart, 4-6 times per day. So basically, I am continually putting drops in my eyes. I go back at the end of November and hopefully will find the treatment is working.

Since Monday, when I felt wholly depleted and beat, I have scraped up some new determination and optimism. It’s on, again. Well, bring it. I’ve got this. When needed, I am as aggressive as hell. This new challenge is familiar ground. As I was pumping up my mindset to deal with this new challenge on a walk, I heard this beautiful song, which is my new fight song:
https://youtu.be/lwgr_IMeEgA