10/20/2013: I’m in full birthday/Halloween mode. We had our annual anniversary pizza at Bertucci’s on the 11th, the beginning of the traditional two week gift-a-day marathon. Michael outdid himself this year, complete with Halloween decorations and a Hello Kitty theme. I’m loving it! We’re celebrating my 60th birthday this week with a long weekend at Lake Tahoe October 24th-27th with my sister and brother-in-law.
I’ve completed 6 UVA1 treatments at 30 joules and 2 at 50 joules. The added 7 minutes and 24 seconds (for a total of 18m 31s) hasn’t bothered me at all. I count to 100, shift 1/8 turn, move my hands to the top bars, to the side bars, or to hold up my breasts for another 100 count, and repeat until the time is up. I have a slight tan. I’ve been using sunscreen on my face. The hyperpigmented and pink areas look about the same all over but the soreness is mostly gone from my back (knock wood). My overall stiffness, aches, and pains come and go and may not be related to the GvHD at all. The primary UVA1 side effect I’ve noticed is extremely dry skin. I use Aquaphor to rehydrate. I also drink more water. The 45 minute drive each way (an hour by the time I park and get into the building) hasn’t been bad at all since I can choose appointment times that don’t coincide with rush hour.
I had my 4 month check-up with Dr. Prescott at the local Wilmer clinic on October 18th. My eyes look medically better than last time with fewer dry spots; however, externally, they still look red and feel irritated. My left punctal plug fell out again. Dr. Prescott tried squirting fluid into the duct and determined it’s blocked by scar tissue, forming a natural plug. That works in my favor since it obviates the need for the artificial plug or cauterization. The Restasis (cyclosporine) keeps the GvHD from doing permanent damage but is extremely irritating. I’m apparently more sensitive to it than most. For most patients, it burns for a little while immediately after administering the drops but is then no problem. For me, it doesn’t burn at all when I use the drops but my eyes are extremely irritated for many hours if I try to focus on anything – driving, computing, reading – and are also excruciatingly light sensitive. I’m okay at night because I go to bed right after I put the drops in. So, Dr. Prescott decided to try me on a stronger cyclosporine solution once daily instead of Restasis twice daily. I have to pick up the prescription at Hopkins as it is specially compounded there. In addition, I’ll continue to use over the counter lubricating drops during the day and alternate Lotemax steroid ointment and Genteal ointment at night. I return in 4 months, February 21st.
We haven’t had many participants in the tag line game lately.
- Day +1012: We Are the Champions, Freddy Mercury (Queen)
…September Song from And All That and More, Kurt Weill
…You’ve Got Your Troubles, The Fortunes
- Day +1034: Remedy, Jason Mraz (IDed by Leslie)
- Day +1035: The Time Warp from The Rocky Horror Picture Show (IDed by Sherry and Chris)
- Day +1042: Blinded by the Light, Manfred Mann’s Earth Band, written by Bruce Springsteen
- Day +1043: You Light Up My Life, Debby Boone [Note – I never liked this sappy song but I figured I should use it because the lyrics fit so well and, since it was the most commercially successful single of the 1970s, I figured a lot of people would know it. Alas, no IDs…]