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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…

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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…

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Each year for the last few years of my life I have picked a word to represent the year.  It sort of happens magically.  Some point in December I get a clear intuitive message that the next year will be about …… and then a specific word comes to me.  In 2017 the word was JOY.  I say it clearly and really was amazed at how joy showed up in places when I least expected or was looking for it.  2014 was gratitude.  That was the first year I did a facebook Gratitude post daily and just that act of focusing on gratitude, finding a reason to post publicly about it through the magic of facebook made it a year filled with gratitude beyond anything I could have imagines.  There was something so powerful about that simple daily act.  Publicly putting it all out there to hold myself accountable for…

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The week has been spent here in Chicago getting all the boxes checked before I report to begin phase one of this stem cell transplant.  Making sure I am completely healthy and that my body systems can handle the stress they need to do to it to begin.   I passed.  We are a go for launch as they say at NASA. Wednesday of this week got the final thumbs up from Dr. Burt.  He answered all my questions, listened to my final concerns and basically we are ready.  Rocky and I celebrated this by heading to a great Chicago restaurant called Topo Gigio.  See a few pics of the place/food:           Got to enjoy one more day of great food, friends and love on Thursday of week one.  Had my amazing friend, Marla and her wonderful husband Stephen braved the approaching blizzard to pick us up…

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So today was a super interesting day.  I woke up in a beautiful condo a friend is letting us use in the “south loop” of downtown Chicago.  It has everything we need and most of what we  would want.  The view is amazing!  The space and privacy is a welcome gift.  We arrived to food galore from a friend to make sure we were stocked. It feels like vacation…… But it’s not. Today was a lab visit for 17 tubs of blood.  Instead of getting upset about the number of tubs I thought, how cool will take a picture to post to all of you.   Then it was off to the x-ray team to look at my lungs.  You see before they give me a massive amount of chemo on Friday they must make sure I am not sick.  Because well that would suck. Getting the chemo on top of…

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As I slowly get prepared to take on this day I can’t help but think through all I need to do and all I actually don’t need to do thanks to you.  Tomorrow I leave for Chicago to begin prep for the stem cell mobilization 2/9 (getting my stem cells psyched about leaving my body) and harvest 2/19 (when they are actually taken from my body).  People, like you all, are jumping in and doing for me things I didn’t even know I needed done. As I have been getting ready for this process I have lost count of folks who have offered help. Financial: We are blessed with a great job (Rocky) and an outstanding business (Betsy and Rocky) but the costs for curing my Scleroderma are steep and many.  Setting up a second house, having someone stay at our home here in Colorado while gone, all the co-pay’s,…

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Stem Cell Transplant (SCT) Steps Steps Completed to Date: Once I found out that SCT could possibly help me lose my Scleroderma for good I… got a referral from my main Scleroderma Doc in Denver, did a phone interview with Carol at Northwestern Medical (NwM) and was asked to send paperwork on medical records for a paper review Sent paper and passed the paper review as a good potential for the still very experimental treatment, Flew to Chicago for a week of in person tests, procedures and meetings (tons of fun!) Accepted into the study and invited to become a stem cell transplant patient using my own stem cells Make plans to go to Chicago for the procedure in 2 steps: My SCT will be in two very distinct parts. Step 1 February Monday – Thursday Feb 5-8, 2018 Go to Chicago for tests, appointments and final meeting with the…

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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…

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