This week has been another roller coaster, but if time is spent under your own roof rather than a hospital than it can’t be considered a bad day to me right now. I’ve ground much of my activity back to a near halt, which is always a disheartening experience after being able to start physical rehab etc., but necessary in order to get a grasp on my muscles, weakness and brain fog after the medicines from KU Med a couple of weeks ago. I’ve been having some more trouble with breathing and my heart sometimes thinks we’re apparently running sprints. I push for the occasional errands, against April’s advice, partially to annoy her but also because there really is no therapy that can replace just going out and seeing the world for a moment. People, grass, activity, campus, anything…

Anyways, the point of all of these efforts in the last month is finally within view. I got a call on Friday from the oncology center in order to begin my Rituxan infusions on April 13th. As a refresher, Dermatomyositis does not have a dedicated treatment, and so each patient has to work with specialists to find a combination that could possibly push them into remission. There are a couple of trials happening right now that could possibly change that in the future, but in the meantime I have been jumping through several ‘primary’ drugs since 2013 like Methotrexate and CellCept, as well as many other drugs that control various symptoms and side effects. Rituxan is an infusion that I have had once before (a year ago), and originally I was going to take it as a new primary maintenance drug once every six months. Fast forward to fall 2015 and I have a tumor removed which put a kink in my ability to get a medicine like this before, during or after. A miscommunication between two of my insurance companies caused the delay over the last month or so. I could go into another blog about patient suffering while awaiting red tape, but I’m also trying to think happy thoughts 🙂

Rituxan itself in a nutshell is a targeted cancer therapy that kills damaged B-cells, allowing stem cells to replace them after treatment. This first round will last for four infusions, once a week for four weeks. Each day will be around 6-8 hours, which isn’t so bad when you have homework to do anyways. The interesting bit of this is that Rituxan will not start to help my current condition for 6-8 weeks afterward. Until then, I have to be careful not to trigger infection, more stress on my mind or body or anything that can jog me back toward the slippery slope.

By the end of May, I should have a better grasp on my progress toward remission. Around that same time, I will be a graduate at the University of Kansas with a BGA in History, minor in Classical Antiquity. I have been in college off and on for eleven years for various reasons..it’s strange to think that this part of it is almost over. Dermatomyositis set me back several semesters from finishing, and for now it is preventing me from moving forward with graduate school. But life is about doing what we can with the hand we are dealt. The staff and the people I have come to know here…I owe them my academic life. They gave me the opportunity to showcase what my mind can still do, something that in itself has been therapeutic. 

Will Rituxan do the trick? Will TJ make it through the rest of the semester without falling asleep at his desk from medicine? Stay tuned 🙂