Same ‘ol Same ‘ol
The past 6 weeks can really be summed up as the same old thing. Go to the doctor. Adjust the meds. Deal with the bad days. Be thankful for the good days. Not too much exciting has happened, which is good. Here are updates on the key points.
Scratch That Itch
One of the side effects that has gotten a little worse since I’ve written last is my skin rash. Skin is a common place for GVH to show. As a recap, GVH is graft vs host disease. This is where the donor cells attack my cells since my cells are foreign to the donor’s cells. I’ve been told that in severe cases, skin can actually sluff off the body when touched. Thankfully my issues are mostly dry flaky skin (mostly on my face) and a reddish itchy rash on my body. We were able to take care of the itching with a prescription strength anti-histamine. Thankfully it doesn’t put me to sleep, although since it is also used to treat high anxiety, I feel quite relaxed all the time.
The dry skin is just there. No lotion really helps because the skin cells themselves are getting killed. When I look down at the floor and scratch my forehead, all the skin flakes falling off makes it look like it’s snowing. I am a bit self conscious about it at times, but at the same time I also forget about the issue since I can’t see my own forehead most of the time.
A big thank you and shout out to my hand model. Look for him on TV. He’s going places.
Well, it’s not really a sponsor, but I want to put a plug in for 2 things. When I was first diagnosed in 2012, some friends put together a fundraiser using robstrong bracelets. I know it’s a little late in the fight, but thanks to all the generous donations we’ve received, I have some more robstrong bracelets to be giving away free of charge. So if you’d like to have/wear a robstrong bracelet, please use the link below. The only thing you need to cover is shipping (payable via Paypal). The bracelets themselves are free and a thank you from Lindsey and I for all your support. A special thank you also goes out to formstack.com for supporting me and allow me to use this spectacular and easy to build form for free.
Plug 2: Raccoon Run at Camp Tecumseh If you know me, you know that Camp Tecumseh is near and dear to my heart. I was a camper there in the 80’s and a counselor in the 90’s. I now serve as Vice President on the Board of Directors.
Camp (located near Brookston, IN) is hosting it’s first annual 5k. The 5k will be used to help raise money for Camp related causes. This year that cause is me. The proceeds from the race will go towards medical bills in 2016 now that our out of pocket has reset. Beyond that though, it’s a chance to take a run/walk through a beautiful camp and meet wonderful people. If you’d like to sign up for the first annual Running With the Raccoons, you can do so at this link. A t-shirt and goodie bag is included in the registration.
And Now for the Results
Today was Dr. Nelson day. It has been 2 weeks since my last appointment. As you’ll recall, I heard that my BMA showed no abnormalities (aka, I’m still in remission). Today I found out what percentage of my blood is from my donor. I’m not quite 100% donor, but I’m close. I’m over 99% donor and less than 1% me (at least in my blood). Dr. Nelson said that was a good result at this point and we will do another BMA in 2-3 months to see if I am 100% donor. His only concern would have been if I was 4%-5% me still. That’s because my blood can be leukemic. We did this whole damn thing to get rid of the leukemia, so waving bye bye to my cells is a good thing.
Post Results Puke
It’s funny because this morning I felt better than I have in a long time. This afternoon was a different story. That’s how this SCT ride goes. I’ve had a slight cold and for whatever reason colds seem to mess with my GI tract. This time is no different. I’ve had an afternoon filled with nausea, diarrhea, and puking. Even had to pull off to the side of the road and puke because there was no delaying the upchuck. I’ve got 2 different anti-nausea meds in me and some Immodium. We’ll see if it does the trick.
A Duck Dynasty Prayer
God, thank you for the encouraging results. Thank you for my donor and the life he provided. I don’t know where the road will curve or what obstacles lie ahead, but I do know that you are with me each step of the way. Good or bad, you are there and I praise you in both those times. Thank you for every step of progress I’ve made. Thank you for another day.
The preliminary results for my Bone Marrow Aspiration are in. The bone marrow shows no signs of abnormalities…aka I’m still in remission. It’s definitely a relief to hear the “all clear”. Next week I’ll get results on the make up of my blood. We want to see 100% donor cells and no more Rob (aka potentially cancerous) cells. Until then, have a great weekend!
Thank You For Another Day 