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So every hospital has great and amazing staff I am sure but no other place has the top shelf, better then I have ever seen, on top of their game folks like Northwestern Medicine.  From the awesome top doc, Dr Burt all the way up to the folks who make the stay manageable in Awesome Alshleey I have been blown away and just simply blessed by Gods grace in these folks hands. Ahsleey, (shown in the picture to the left with her permission) let me pose for a snap as she made her work a blessing for me in the form of a smile, a clean room and always having a smile in her voice, words and willingness to assist with the cleanliness of the room.  I am blown away by her support.  Simple tasks you may say but man is it different when they are done with clear pride…

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So the sun peeks through the plastic, very beige curtains to awake me to the first thought today: it’s sunny! Quickly followed by “This is the last big step before I get to become Betsy 2.0”.  I am laying in my hospital bed, in an amazing facility in one of my all time favorite cities! The windy city, Chicago! Out that same window I see Lake Michigan, a sprawling city and views of the med school that has taught and is teaching these great folks how to combine science, brains, decades of research together for my perfect storm.  Take a disease that one day at a time is trying to kill me and flip the script!  Flip that completely and re-educate my immune system to stop giving me “the dermas”. The fixed schedule is almost exhausted as I’m finishing up “Day – 1” (Tuesday).  Day-6 through Day-2 has been chemo…

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Timeline as of 4/10/18 Checked into hospital, got PICC line for meds and began Thursday April 5 day 1 of chemo Friday April 6 day 2 of chemo Saturday April 7 day 3 of chemo Sunday April 8 day 4 of chemo Monday April 9 day 5 of cheno Tuesday April 10 A day of various prep drugs and treatments to accept my stem cells back into my body. BETSY 2.0 TRANSPLANT DAY Tuesday April 11th at 10:30 Chicago time I get my stem cells back. and many call this day my new Birthday.  It is actually my 1/2 Birthday. Wednesday April 12th to April 21th or longer ????? Get immune system built back up so I can head to condo to heal here a week then back to Colorado and let the new life begin.  

Still doing great, however had a couple hiccups along the way last night. Because scleroderma has already affected my heart with a condition known as pulmonary hypertension, they are being super careful and watching my heart like it belongs to a newborn child. My blood pressure spiked to 177/78 at 4:30am and the night nurse started shaking just a little. The bonus round for today’s jeopardy game was my heart rate dropped to 44. Bottom line- heart was working hard to beat very slowly. Met with Dr. Burt this morning and instantly started a plan of action to handle all of these “minor” challenges. A few more tests, a few more meds and they are putting this humpty dumpty back together again. On to happier news, 24 continuous hours with my lovely daughter Victoria makes the hours fly by and feel like seconds. It’s a tough way to get her…

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This is the third day I’m receiving chemo, along with other stuff to make the chemo more tolerable. For any of you medical folks or those who have ever needed steroids, let me just tell you my daily gift of steroids is now up to 1000 milligrams.  Guaranteed to rock anyone’s world at that rate! Sometimes I wonder if the drugs to get you ready are worse than the actual chemo itself! As we were doing daily laps (because they like to see us moving around) Rocky and I stopped in the visitor room and caught a glimpse of a familiar name on the wall.  An artist from Ft. Collins has their painting there, along with a plaque identifying the artist and her home town of Ft Collins, CO.  It’s a small world after all, isn’t it?                 Today’s silver lining in all…

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The debate has begun about really important stuff…..Is it count down to stem cell day, count up to stem cell days, count all the days going forward or go backwards?   No idea all I know is I am here, in the hospital waiting for the first dose of chemo to begin.  Today is my first day of what is to be 5 days in a row of the chemo therapy. FYI No living things like flowers or plants but love is welcome. My mailing address for those that asked is: NM Prentice Woman’s Hospital Elizabeth McGrath Craig Room #1672 250 E Superior Street Chicago, IL 60611   So now the treatment begins and the waiting is over.  I am actually finally beginning to believe this will happen. PICC line was put in place to make all deposits and withdrawals a ton easier!   Its the simple things in life I…

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Today I am all packed and ready to get on the pane back to Chicago tomorrow to begin Phase 2 on Wednesday.  It also happens to be Easter Sunday and my first order of business this morning was Church to count my blessings and remember who actually is in charge of my life.   Not the doctors, not this nasty disease, not my spouse or child or friend but just simply God!  As I sat there in my seat at 7:50 AM so much was running through my head.  For the last week I have been trying to figure out how to put into words what my my world looks like for the blog I wanted to get out today.  Guess what? This morning, in that hard, burgundy plastic chair, in a huge Catholic Church that was already too hot for the day, watching a sweet 3 years old girl dressed…

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This morning, as I was beginning my day doing what I do each morning, I was struck by a post I read directed to me on a facebook post.  It was from a childhood friend that gave her version of love on a post I was tagged in.  She told me “how strong” she thinks I am and it was “a shame I am so sick”.  I want to scream and say its not a shame, it is life.  It is just the path I get to walk.  A shame would be to give up and roll over in life.  Also by the way it is super hard to see myself as “sick”. Maybe that is one mindset that is different for me then for others. Being chronically ill for more then a decade makes my perspective, attitude and outlook different from the inside of my body as I look…

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