There is much unrest in the country right now and a lot of current discussion about privilege, but I’m going to leave that topic for people who are far brighter than I am.
But I am privileged.
It’s not lost on me that I am incredibly fortunate to have even been able to MAKE this trip to Pittsburgh. So many things had to line up correctly for this to happen:
- I have a job that provides paid sick leave. So many people don’t.
- I have a “federal” insurance plan that allows me to seek treatment out of state.
- I have accrued so much sick leave over the years that even if I take five weeks of leave, it will barely make a dent.
- I work for an organization that values its employees and their health.
- I have the financial resources to be able to travel here and to be able to rent a house for three weeks. I mean, what a luxury that is.
If any one of these things fell through, I would be dealing with a completely different situation and, very likely, a completely different outcome. I do not take this lightly. I am incredibly grateful to have this opportunity, no matter how it turns out. If my math is correct, the known incidence of this disease would indicate that approximately 900 people in Albuquerque have it. What are they doing? Where are they going? Are they even getting treated at all? It took forever to get here but I am grateful to have made it.
I also want to say that I am very thankful for all the support I’m getting from family and friends. That’s been a real boost for my morale. Thank you friends. Truly.
I spoke with the doctor Monday about the facial swelling. She had me stop taking lisinopril (blood pressure/kidney protection medication), which I’ve been on for over a decade. Apparently it can cause facial swelling, even unilaterally, at any point in time, even if one’s been on it for years. I googled pictures of this, and I don’t recommend you do the same. Yikes. Luckily, my facial swelling was nowhere near as bad as those images, and I didn’t experience any swelling in my throat or lips, which could indicate impending doom.
Instead she started me on a different blood pressure medication, which I just started yesterday, but I don’t think it’s going to do the trick. My blood pressure was way too high most of the day today. But once again, I have to bitch about the prednisone… the fluid retention and weight gain I’ve experienced is definitely enough to affect my blood pressure. It’s a real bummer, as prior to this it was very well controlled.
Personally, I don’t think it was a reaction to the lisinopril but I understand her wanting to be cautious at this time. I’m still leaning toward an insect bite of some kind. She said that she’s not saying she’ll never put me back on the lisinopril but will likely wait until after my next infusion. I will see her in person next Thursday (I thought it was tomorrow but I got the dates messed up).
I had my first infusion of Rituxan today. It went very well. The hardest part was finding the correct elevator to the correct tower in the huge hospital. I was scheduled to be there for nine hours but finished in about six and a half. The nurse told me that they schedule it for longer in the event I have any type of reaction or complication, such as a fever or difficulty breathing. She said that’s actually somewhat common for the first infusion, but luckily, it went off without a hitch. They also gave me 100 mg of prednisone (DAMMIT!!), so she said, “You probably won’t get much sleep tonight.” Oy.
Low, Low, Low 