It’s been a minute since my last post, sorry y’all. I actually feel like I may (knocking on wood) be acclimating to the meds and the headaches may start to abate. The neurologist I was referred to is booked out 6 weeks in advance, so I won’t see him until mid-June to find out what’s kicking around in there, but I do feel like it’s been a little less violent lately…
I haven’t noticed a change in my energy levels just yet. My sleeping patterns have been pretty rando, actually. Some days I sleep like it’s my job, and other days I go to bed at midnight and am wide awake at 2:30a doing crafts in my office. I will say that when you’re a midnight crafter, nothing beats a good diamond painting. The repetition of placing thousands of tiny plastic discs on a sticky color-by-numbers mat does wonders for shutting down pesky brain activity.
So I’d previously mentioned being diagnosed with Aplastic Anemia at 13. I had weird bruising and bleeding that tipped us off that something was up, and the initial standard lab tests showed that my platelets were at 81K; normal is between 150K-400K. Over the span of two to three months, while doctors did numerous tests to try to figure out what was wrong, my platelet count dwindled, plummeting to a terrifyingly low 2K, wherein I was told to lay in my hospital bed and not move while the platelet transfusion was on full throttle.
They tested for all kinds of leukemias, cancers, ITP, HIV, AIDS, etc., finally settling on the rare Aplastic Anemia, which occurs in only one to two people per million each year. There are a variety of causes of aplastic anemia, but as was the case with my diagnosis, in about half the cases the cause is unknown. Growing up in a rural farm community, pesticides and insecticides were common, which can be a cause. Certain drugs can also cause it, such as chloramphenicol, which is an antibiotic I was prescribed as a child to treat Rocky Mountain Spotted Tick Fever (I’m telling you, I’m a drain trap for weird health issues). We never really knew for certain.
As soon as we had a diagnosis, the doctors told us the only course of action with any real promise was a bone marrow transplant, so they started out by testing my older brother to see if he was a match. Despite my misfortune when it comes to random health problems, God definitely had my back on the BMT, because it was One & Done with my brother – no other testing needed, he was a match. Everything happened so fast after that…it seems like within days, we found out he was a match, I had surgery to insert a Hickman catheter, and then I was wheeled up to the BMT Unit and shown the room I’d be in for the next two months. I’m still annoyed that they let me walk into the room, with its’ full length Laminar air wall, without telling me that once I went in, I wouldn’t be allowed to come back out. If I’d known that, I’d have given my mom and dad one last hug without the gowns and masks and gloves and regalia before I walked in. That’s how they get ya…
I walked into my room on December 3, 1991 and started a course of chemotherapy to kill off my immune system. On December 10, 1991, I received my brother’s bone marrow (if you’re curious, it looks like blood and is administered through an IV…when I asked the doctors how it got from my veins to my bones, they said, “We don’t really know…it just does.”). On Christmas Day in 1991, my blood counts showed the first signs of bouncing back from the illness, and on January 28, 1992, I was released from the hospital and allowed to return to my hometown two hours away. The day I got home and we pulled into our driveway, our house had banners and balloons and flowers along the garage door, my bedroom windows, the light in the front yard, and all over the front porch from neighbors, coworkers of my parents, friends from school, people from our church, etc.
Throughout the transplant, my mother stayed with me in the city during the week, and my dad and brother would be back home working and going to school. Mom stayed at the Ronald McDonald House, and would have frequent visits from my Grandparents during the week, and from my dad and brother every weekend. When Mom ran out of personal leave, the teachers in the school district back home donated their own personal days to a pool for her so she could stay with me and continue to get a paycheck.
My dad’s job was our primary insurance provider, and the insurance company started sending a rep to check on me at the hospital during the transplant, and long after I got out…not just because I was a huge investment for them, but because they actually cared how I was doing. While Mom was in the city with me, our church and my parents’ jobs organized food delivery so that not a single day passed that my dad and brother didn’t have a home cooked meal provided for them in Mom’s absence…for two straight months!
After we got home and Mom was comfortable going back to work, I was still at home because being around people was too risky with my weakened immune system. Mom’s friends who didn’t work took turns stopping by to check on me, picking me up and taking me for a drive just to get me out of the house, going to the Sonic for a Vanilla Coke, or taking me back to their house with them to hang out while they did chores.
All of those experiences were like being able to see the face of Jesus each day in the people around me, and showed me that God truly is everywhere. He has a plan for each of us, and while there are times when gross stuff happens, He is always there to walk through it beside us. That has given me the comfort and strength to face each subsequent random health crisis I’ve encountered head on. That doesn’t mean I don’t still get scared or worried or anxious or sad, it just means in the end, I know that He has plans for me…plans to prosper me and not to harm me, plans to give me hope and a future. (Jeremiah 29:11)
Much Love – Tessa & Her Bum Liver