(be sure to go by my pictures folder on flickr at http://www.flickr.com/photos/kraftsims/sets and look at all the pics I’ve uploaded lately)
Time for a medical update. Thought I’d give a written report (blog) this time instead of a video.
I reached my 6 month “new birthday” this month, May the 11th. I was given my stem cells on 11/11/14. The six month mark is a big deal to the transplant team evidently. I’m right on track with my healing. Usually takes between 6 months at the earliest and 12 months at the longest to recover from a stem cell transplant. Making progress, but still have some to go.
One month ago, I was so tired but was starting to “push it” a bit. By pressing in, really just trying to stay busy around the house and start getting out of the house a bit, I formally (to me) entered a no longer staying caged up mentality. Time to start the reintegration with life in general and the world at large. May sound odd to y’all, but I was afraid of getting out and getting sick. I knew at some point I had to do my best hygiene practices, but reintegrate with the world at large.
Visited a relative for a weekend, went to help out with a fundraiser for my cousin Andrew Vasek. That was exhausting to be honest. Fulfilling, sad (he passed late last year at an early age), but was a good initial step. Go stay with a relative, mostly walked around, ate BBQ, took pics to help with the fundraiser, that we pretty much it. I really pooped out after that, but could tell it was a good initial step in increasing my endurance and fighting against the deep weakness.
Rested a bit, then went to another relatives house. Went to a wedding in Corpus Christi, my sister-in-law. Stayed with her and her new husband, great people. Wedding was super. Made it through that one ok with no medical problems. Lots of low key fun. Pushed a little on my endurance and it helped to get it improved some. I didn’t feel as tired and exhausted as I did the previous trip out of the house.
Rested a bit between trips and caught up. So far no major illnesses, just general weakness and a deep exhaustion to battle against. Everyone comments how well I look. Thanks for the compliments. I suppose I’ve hidden how I feel really well, hence some of my explanations on here. Gets easier to smile through all this while fighting the symptoms internally, but I must press onward. I did the superman at the gym thing after my 2008 cancer diagnosis, just don’t care to go that route this time. Want to experience life outside a gym, not inside a gym or on a walking track. But that is me.
Went to San Antonio to enjoy the pinning ceremony and graduation of Emily Cruse GN, really proud of her. Known her dad since I was 13. That was an honor to pin her with her nursing pin, never done that before. Really cool moment. Stayed at their place. Lots of sitting around, visiting, good times and wonderful memories.
Got to also see my step sister and her husband, that was really nice. Don’t see them often. They picked me up and we rode around the hill country.
My body revolted a bit after that trip. Didn’t exhaust myself or anything, slept well, mostly sat around, little bit of walking, just staying busy. Fun and relaxing, but steady stuff. Retraining my body to stay in movement steadily. I suppose if you count sitting in people’s homes and riding in cars movement…. 🙂
When I got home that Saturday (last Saturday), I guess the different germs my body is having to “relearn” caught up with me. Talk about ill. Oh my gosh, it was a two bucket alligator calling session. I called gators from the salt flats of Matagorda, Texas to the sewers of New York City. It was miserable. Fortunately, that only lasted about 5 hours. Took a day to recover, but I managed. The GI symptoms keep hitting me hard every 3-4 weeks. I’m ready for that to be over with, never had much GI stuff in my life. Talk about miserable. Ugh. That Melphalan from the stem cell transplant (I guess that was it) has really altered my internals a bit. I’ll manage.
Then a small lung/sinus infection. Taking nasal steroids and antibiotics for that.
My stamina and endurance is starting to pick up overall, weakness isn’t as bad. Can’t tell much difference from day to day, but week to week and certainly month to month, it has improved. One month ago, I was so tired. Today, not as tired and getting better.
I use an N-95 respirator when around the house for doing things that generate dust, like light mowing (small yard with little grass right now), touch of light yard work, cleaning around the house, etc. I’m looking at it like doing things around the house is my therapy physically. Taking appropriate precautions. Ran all this by the transplant team, seems to be a good therapeutic approach to returning to normal endurance. I suppose I could be going to a gym or something, but I’d rather do things around the house. A full day is tiring for me just putzing around, but it is improving.
My original return to work date was set at June 15th. I am asking to extend my leave of absence by a few weeks. I’ve improved physically and we set that date arbitrarily based on … nothing, just guessing. I was told as we approached the date, we could adjust it based on how I’m doing. I certainly will not need any 12 month recovery period! I’ll go crazy by then.
I’m looking forward to getting back to work. Strange being in this grey zone of recovery. I was so sick not too long ago it was hard to get off the couch for more than an hour or two. Feeling better overall, improving, thinking I’m invisible and bullet proof, then WHAM! another infection or I hit a wall of exhaustion and have to rest, causes a set back, weakness, blah blah. You get the idea. Pleased with the progress, wish it was quicker, but I’m right on track.
Thank you all for your love and support and prayers. Keep ’em coming!