Friday, October 31, 2014
Milestone: One Year Since Second Bone Marrow Transplant
For those of you who follow this blog, detailing my journey of survival and hope, you've waited a loooooong time for an update! My apologies! It has been a year of whirlwind ups and downs, sometimes a step forward and two steps back. Isn't it supposed to be the other way around?
Over several months I've been in and out of the ER most of the time for severe stomach upset, both vomiting and diarrhea, which caused a dangerous drop in blood pressure and dehydration. A couple times it was for a pain crisis and a couple times I was hospitalized for a fever that crossed the threshold of acceptability.
The ups have been many as well. I've enjoyed getting to know new friends that have become very special to me. I've had the pleasure of getting to know Kim Newton who has generously given her time and energy to drive me so many times to City of Hope which lies 2 hours south. I can only drive 45 minutes at the most so this help has been so appreciated and lets Mike work instead of having to take off of work. Kim introduced me to Roxanne's A Wish and a Dream Quilt Shop and to the world of quilting! I made my first couple of quilts, a wall-hanging and a quilt top, took a class and am almost finished with that quilt top, another wall hanging which is a gift I have yet to finish, oh and many projects in my queue, which I hear is a common problem for quilters! I started with a bang, then got overwhelmed with fatigue and stomach problems and find myself resting and getting inspired, but unable to get it done myself!
I've also had a great time getting to know various women of Calvary Chapel. I risk leaving some out, but have to mention new friends like Linda Laskin, Carolyn Wageneck, Mary Carty, and so many more who have given their love, prayers, gifts and friendship over the past year. There are some ladies who've given me all that who I don't even know! That's just the kind of community we have here in Santa Barbara at Calvary Chapel. I'm so thankful that even though this whole year I've been unable to attend church on Sunday (my family goes without me so I can stay out if large crowds), not only have I not been forgotten, I've made new friends who've reached out to me and whose fellowship keep me going! A month ago or so, Mike and I started going to a mid-week Life Group. It's been a blessing to feel connected to the church body again! And now that my 1-year has passed I can start to attend Sunday mornings again. Thankful to have the option to watch the service via live stream, it will be nice to worship in that space.
I'm on so many medications and they've really taken a toll on me. I don't look or feel in a way that I recognize. But they keep my immune system at bay (to prevent severe GVHD), my blood pressure down, my thyroid in check, they attempt to normalize my hormones (not there yet!), give me energy, reduce my stomach acid, increase my vitamin D, connect my nervous system, reduce pain and move my bowels! Ha, too much information! The thing I deal with most now is gastritis, or inflammation of the stomach lining.
I recently had an endoscopy and a biopsy of four places in the gastrointestinal tract to look for GVHD. The good news is they found no evidence of it or of any infections. They've just determined my problems gastritis. Now I need to figure out what to do about that. Is there a certain diet that could improve it? Or is it medication side effects that won't improve until I can get off of them? I don't know, but I covet your prayer for a miraculous healing there. Add to that my second problem which is also inflammation, but all over and most notably in my feet, ankles and calves. There is no known cause as we've sought all possibilities through a variety of specialists. Insurance has not been covering things as well as they used to do and we are tapped out. So please pray for healing and that God would provide for my medical needs as He always has.
Two things I started that seem to help is gentle exercising at AC4 Fitness, working with a woman who is showing me what and how to do it without overdoing it so I don't have too many setbacks. The other thing is acupuncture! I found an excellent place called Downtown Community Acupuncture which offers treatments on a sliding scale from $20-45. It's so convenient with their online appointment setting and paractitioners available all day, everyday. With my level of problems, ideally I'd be able to go 3 times a week, but am stretching to afford 2 per week. I'll take it! I highly recommend this group if you have pain or any other problem, unspecified or not,
Yesterday was my one year anniversary which some call a new birthday, but since it is my son's 13th birthday as well, I call it my anniversary. He didn't seem to keen on sharing his birthday with me, not understanding what was meant by it, lol! Though as he headed off for school yesterday and I told him "Happy Birthday!" he yelled over his shoulder, "Happy Birthday!" twice to make sure I heard him. Too sweet!
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