This was Susie’s first full week of radiation and chemotherapy treatment. I wish I could say it went smoothly, but it was quite a challenge. Susie stopped taking Dapsone on Tuesday, but her full body rash/ symptoms have not reduced. The good news is they have not increased. From what I have read, talked with medical practitioners and remember from her Dilantin body rash experience, it can take a while for the rash to dissipate. What we desperately hope is that the rash does not bring on shingles. Susie had shingles fourteen years ago and painful, irritating and frustrating is a good way to describe adult recurrence of chicken pox.
In addition to the rash, Susie also had a cold and is having a difficult time with temperature. We took care of fever quite quickly with a regular alternation of Ibuprofen and Acetaminophen every four hours. Unfortunately, she was sleeping trying to get over her cold when we had 80 degree F/ 27 degree C weather early in the week. Now that the weekend arrived with a cold front (freezing temperatures the last two days), she does not want to venture outside. The challenge is without the Dapsone antibiotic, she’s at a higher risk for developing pneumonia with her chemotherapy/ radiation regiment. So, we’ve agreed for her to relax over this weekend and then start walking each day in the afternoon.
We’ve had a lot of friends offer to provide assistance. We’re still trying to keep our house void of guests. The only visitors we have are her mom and when people bring over food. The UMA 4 Group, that Susie is a part of, is bringing us a meal once a week. Susan Steffes, who is coordinating the meals, brought us the week of Thanksgiving a delicious soup with ginger chicken meatballs. We had enough for two meals. Though when it came time for dinner the second night, there were no meatballs in the soup. Our sneaky Pearl loved the meatballs so much she had them for an after school snack. This week, Jane Gillman, who used to teach Gabriel guitar, brought us a delicious vegetable soup, a salad and an awesome loaf of bread. We used the bread a second night, when I defrosted a Coq A Vin that I made a couple of weeks ago. Each meal was wonderful, especially under the glow of Hanukkah candles.
So while we had a challenging week, it was filled with love, support and a flickering candles. Next week, we hope the rash/ itchiness dissipates. At the end of next week, we are looking forward to Gabriel flying home from Cal Poly.