On Thursday Laura finished up the 2nd of two eight week cycles of photopheresis. The results of that treatment are still to be determined.
The next thing on the treatment plan is an infusion of an immunotherapy drug (can't remember the name of that drug).
(I'm not feeling very clever and creative with my writing right now, but here are the bullet point items.)
- She's gained weight.
- She also has fibrosis of the lungs.
- She has graft vs. host disease in her joints, eyes, skin and lungs.
- Her lungs are only at 45% capacity.
- The doctors do not advise her to go back to work because her resistance is still low.
Because she's a go-getter, she is doing all she can to get better. She walks at the Y every day for 2 1/2 miles. She has done stuff around her house that you might not think is such a big deal, but it really IS a big deal.
I asked Laura to tell me how things have been going...things she's done lately, etc., Here's the email that I got from her:
The biggest accomplishment lately is the changing of 8(!) fluorescent 4 foot lights in the garage and 2 flood lights. I told myself, "I'll be durn if I get somebody to come over here to change the light bulbs!" It probably took me about 45 minutes and I was TOTALLY out of breath but so HAPPY! It probably took me 2 days to completely recover but I didn't care. I'm pretty sure it would have been a pretty big deal for some regular people.
I have read LOTS of books and Mama would have been so happy that I was reading plus I have Miss Dye and Mrs Cannon to talk about them with.
I was able to go to an FCCLA region competition in Warner Robbins and judge a STAR (Students Taking Action with Recognition) event. It was kind of difficult getting from the parking lot to registration and then to the room but I didn't use the inhaler and I didn't have to stop to recover. It was so good to be around students and adults that enjoy doing that kind of stuff.
Clif and my granddogs came to see me last weekend and I'm looking forward to Clif, Trisha and Mary coming next weekend for a "meet and greet" party for Trisha and Clif and a shower for them at the church.
I still go to spinning and do what I can. My instructor is very understanding and encouraging.
I have been cooking more and enjoying doing it. I am also thinking of things to sew. I'll probably start stuff like that next week.
I can vacuum without too much difficulty.
The pneumonia part is undetermined. They say my lungs sound clear but they don't know for sure until they do another CT scan. I think I have less than 45% lung capacity now but I'm trying. I go to pulmonary rehab twice a week and do whatever I'm supposed to. One of the best things about that is meeting other people with similar issues and talking about how they handle them. There are some amazing people handling lung problems everyday. My Thursday afternoon class consists of me and two other women; one 91 and the other 93 years old. One of them is on oxygen all the time the other is not but they are hanging in there!
And the best part of this whole journey ("into the wilderness") is I've got the best support group of family and friends!
Today is sunny and beautiful. I have already been to Tift Park in Albany to visit the booths of all kinds of stuff from jewelry to soaps and etc. Tonight I'm doing Mexican Music Trivia night with the spinning group. The sun makes me feel positive.
Yes, there are set backs but at least there is something hopeful.