Living with Lucy Part 2
Last updated: April 2023
That visit was soon followed by a hematologist/oncologist consultation because he specialized in dealing with folks who live with Lucy or one of her cousins. He explained that I was in the wait and watch stage, where we would do nothing but watch my blood lab work to see if changes occurred. I left that office feeling very positive, thinking I would be one of the 90% that would never need to be treated for it. I expected life to go on like normal.
My white blood cell counts were climbing
But Lucy was busy, slowly making my blood more and more dysfunctional. This became more apparent in 2016 when I was attacked by a large dog and had to go through a couple of months of antibiotics to get rid of the infection. That was followed by a bad sinus infection. My white blood cell counts were climbing and every time I saw those numbers in red, it scared me. Not only were those numbers climbing, but some other counts were way off kilter also, indicating that my blood cells were not shaped correctly, and thus were not able to do their jobs properly. Lucy was attacking my blood, determined that I would be in the 10%. Why was she being so mean to me?
GI system problems
At about that same time, Lucy caused my GI system problems to get worse so that she could steal my sodium. When I was at Moffit Cancer Center for some testing, they asked me 12 times in an hour if I had fallen in the last month. Then they asked about the confusion – and yes, I had been confused. My sodium was so low they were surprised I was walking around. They said that if I was not in such good physical condition, I would have fallen and likely broken a bone or two since I have osteoporosis – the one thing not caused by Lucy! That was when I started salting my food. I salted everything-- even toast! And I drank Gatorade and equivalents, trying to replace what Lucy stole. Still to this day, I salt my food extra because I never want to go back to feeling that confused and unstable.
Another sinus infection
2017 brought another sinus infection, one that lasted 9 months. You can imagine how many antibiotics I took during that time. There was also tonsillitis and strep throat and shingles even though I had the shingles vaccine in 2015. During that entire year, I did not feel good. That mean girl Lucy was just messing with my blood and causing me all kinds of problems. But my red blood cell count was still good, so chemotherapy was not warranted. The five types of immunoglobulins (antibodies, in other words) in my blood were very low but not quite low enough for insurance to approve immunotherapy.
Lucy wanted me to be sick and not able to be with people so she stole my antibodies which meant my body could not fight infection. I ordered masks so I could at least go to church when I was not contagious. I had been coordinating Faith Farm with the children at church, where we grew and learned about the plants that were mentioned in the stories they were reading in the Bible, but I had to quit that because children are little germ factories. It was too big of a risk for me to be with them. That was hard for a former teacher and principal, but I did what I had to do.
Lucy was stealing my antibodies
Thankfully, I had a new oncologist who realized that mean Lucy was stealing my antibodies so I could not fight infection. He told Medicare I needed immunotherapy no matter what the numbers said. In March 2018, he facilitated immunotherapy infusions for me. Now there are several types of immunotherapies. The one used to fight Lucy is made from other people’s blood. It takes a thousand to fifteen hundred people donating blood to get enough of the immunoglobulin needed for each infusion, which I started getting once every month (now I get one every three weeks).
How do you feel about your support system?