The Miracle of Harvest Day
Monday February 19, 2018 The day began at 6AM with me waking up so super excited I could hardly contain it. I am so ready for stem cell harvest day. So we began today the same as the last 5 days, shots to keep those stem cells hopping. Rocky did an amazing job each day of administering the shots carefully, completely and with the most love ever! Rocky Rocks! Then its pack and off the our new favorite Chicago location, Northwestern Medical center. Truthfully these folks are amazing. Top shelf care all the way. One person nicer then the next. First its blood work to make sure all my numbers are good enough to donate my own stem cells back to me. The ups and downs the last two weeks of all these medications have made me a science project changing white blood counts, hemoglobin, platelets, red blood cells and…
Thank God I’m a Woman!
My very first thought this morning when I woke up, still rolling around in the bed this morning was simply, Thank God I Am A Woman! Being a woman means I get to have a monthly visitor. I think we used to call it “our friend” (who the hell came up with that stupid name? saving for another day). Well without going into details about my “friend” I will simply say that it prepared me for body aches out of nowhere. A slamming in my face, take my breath away ache. On the upside, cause you know I always have an upside, I have had experience handling the discomfort, pain and knowing that this too shall pass just like most women walking the face of the earth. My extra little pop quiz in life has been the bonus of this disease called Scleroderma. My long (almost 14 years) history with…
Awesome Mixed with Not-So Awesome
So as I try to figure out how to put into words what is happening now I am searching for the right words. The words that are wrapped in gratitude. The ones that don’t make me sound like a victim. I had the wonderful pleasure of having my daughter come visit and spend time with her. Always saying goodbye is hard. This time was so much harder. Can’t wait to see her again. In the mean time I can’t get my fever under control. It spikes, then Tylenol brings it down then I feel like a hostage because I wonder if grabbing a burger at Shake Shack is what caused the fever….I want to tell the docs all about it (and I have just waiting for their next steps while I type this) but there is a HUGE fear that they will tell me that to have problems this early…
Grace for Stem Cell Step 1
Yesterday, Friday 2/9/18, during a serious Chicago snow storm, we headed to the amazing hospital to begin the real work of Step 1. The first part is mobilization thanks to a huge dose of chemo. Most of the morning was spent getting me set up, checked in and on board with a working IV to give me the medications my body needs to fight this horrible disease. A stem cell transplant is such a new protocol and seen as a true miracle and beyond my wildest dream in the past. There are meds to counter act other meds, meds to keep certain symptoms at bay then then there is the true poison, Chemo. Loved Nurse Emma and NP Amy who made this entire process so much less scary, talked me through everything, answered every single question we had and just were simply top shelf. I have been on chemo…
Stem Cell Transplant: The Back Story
In June of 2017 I made a decision to join a fundraising walk for Scleroderma in support of a friend. You see even though we share this horrible disease, she had seen her disease attach her foot and in short order lose her leg. My buddy, Eileen had the very best doctors at Johns Hopkins and if there was a way to save it I have full confidence it would have been saved. So when I saw this walk to raise money for Scleroderma was coming up in 10 days in Denver I jumped in once again. I used to support those walks yearly but stepped away for a number of reasons none of which mattered this past summer. I was able to attend schedule-wise and my feet worked and I had both so I decided to walk. Up went the fundraiser page and off I went to walk. Turns…