Chronic Graft vs Host Disease :(

Hello a year and half post transplant! I can't believe it's been 6 months since my last update! And so it is, LIFE GOES ON AFTER CANCER. A quick update; I have moved back to Austin, TX just like I always said I would. I DID go back to work full time in a pediatric clinic, I am a full time MOTHER again to Ryan and Rachel who started first and second grades this year! I really dove right back into life. Big move, full time job, full time mom (including Martial Arts and Baseball for Ryan, and Gymnastics for Rachel)! I go from 5:45 am to usually 11:45 pm. Since being back with the kids we've been to Sea World with Aunt Jenn and Uncle Adam, many days spent at the pool or water parks around town, the circus, back to Arlington to visit and so on. I will NOT ever lay in a hospital bed again fighting for my life and question "why didn't I do that when I had the chance?" If I want to do something, I'm going to do it now and not wait; wait for what anyway? I have a completely different attitude about this life now. I try to do every last thing I can with Ryan and Rachel NOW! It's all about making lasting memories today, because that's all I'm really guaranteed. Having said all that, this just wouldn't be a cancer blog without COMPLICATIONS FROM THE CANCER TREATMENT right! LOL. That complication is coming in the form of chronic graft vs host disease of the musculoskeletal system. It sucks. It's very difficult to describe how it feels to have someone else's immune system attacking your joints and muscles but this guy's cells are wreaking havoc on mine! My hands and feet will cramp into weird positions and stay there for a few MINUTES...like getting a charlie horse only you can't stretch it out...AT ALL. In the last few weeks it's been happening in the top of my feet like in between the small bones in there and there is no way physically possible to "stretch" it out, it stops me dead in my tracks, it happens in my calves, behind my knees, my hips and the hands. IT'S A NIGHTMARE! It happens unexpectedly, it happens at work, it happens just sitting on the couch, it happens while writing, it happens ALL night sometimes! I'm very frustrated at the moment. About two weeks ago my doctors decided to start the steroids again. 60 mgs of Prednisone, my nemesis. Also, back on the anti-rejection medicine Prograf. Prednisone makes you crazy. I haven't slept good in days now, mood up and down as they take me down off the steroid and then back up as the pain gets worse when I go down. UGH. They say this will be life long but "manageable". Awesome, can't wait to start managing! I will be going to Dallas on Thursday evening to be up bright and early for...wait for it...A BONE MARROW BIOPSY! Yes, another one of those. I'm focusing on seeing the family, I really need some good family time this weekend! Just being there laughing, eating and enjoying what families do. Mom's making a roast with all the fixins. Mmm. I've considered not working full time anymore. I can't imaging being ONLY 30 (Lorenzo) ;) and NOT working. Maybe I'll become a room mom for one of the kids' teachers, or take a cooking class, go back to school and do something completely out of the medical field that would be less stress (and pain) on my poor body, I just don't have any ideas yet. But I do feel this may be a good road to consider given the new circumstances. Any and all ideas for a new career path are welcomed! I need to(and will)update this more often. I have recently found someone new that has been recently diagnosed with this awful disease process. She too is a young mother with a husband and son. She has started her first round of chemo this week and has NOT been feeling well. Rita, I lift you up through this round and pray your body does what it needs to FIGHT the cancer and may your counts recover quickly so you can get home and rest. Still Fighting, Katie 18 Months post transplant....I'M FINALLY GETTING SOME HAIR!