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Speak Stem Cell Transplant

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.

Amy Nurse Practitioner (I just called her Rock Star)
Special bag for all chemo supplies, who knew?

I have been on chemo pills for years but they are NOTHING like this nasty stuff.  The ones I have taken have given me the use of my fingers back, they have made it so the progression of my Scleroderma induced lung disease gets worse at a slower speed but they are a different type, delivery of and strength of this chemo.  They are still chemo make no mistake being on the crap for 7+ years has worn me down at the same rate it has worn down my disease.

This is a Control – Alt- Delete process.  A Betsy 2.0 not a new app or a faster drive but an entirely new re-set.

Now I was expected to be sicker then a dog, feeling ill, nauseous, vomiting,  not a happy camper.  None of that has happened.  I got a headache. Took an Excedrin and it was resolved.  My blood pressure dropped a bunch and then recovered.  I had a seriously hard time with the IV’s as my veins are toast from being so sick for so long.  I was a little cranky……That was it.  AMAZING!

I am back in our gift of a condo for the evening, waiting for my daughter to get here on a plane from back east.  My bonus son has our home all covered, cared for and well watched as he is calling that home this week.  Waiting on yummy pizza from Rosati’s cause, well I can get Rosati’s here in Chicago, yesterday was National Pizza Day and I just didn’t trust my tummy.

Whats next? Well on the calendar is:
MOBILIZATION: Saturday Feb 10th to Tuesday Feb 13th recover from the chemo.

I will probably go get the hair cut as I do expect it to fall out within the next 10 days.  Would be cool not to have that side effect but well as I live my life I will plan the plans not the outcome.  We shall see what the outcome brings.

Thank you one and all for your love, prayers, thoughts, wishes, donations, hats (that have shown up at my office), generosity beyond measure and all things making this awesome challenging opportunity not only possible but actually manageable.

Thank You!

 

Categories
Teach

All Systems Are Go

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:

Grilled Calamari
Cracked Pasts (Amazing)

 

 

 

 

 

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 and head to dinner.

After so many trips and meals at fancy places, I was asking for a simple, wonderful, old school, traditional  deli.  I got that in Manny’s. Here is a wonderful write up about Manny’s from the Chicago Tribune.  A true Chicago  landmark and legend. 

 

Categories
Stem Cell Transplant

It Takes A Village

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, all the travel, all the extras, well it just adds up. We have spent over $5,000 to date just to get to this point and expect when all is said and done, even with the amazing support we have, it will cost us well over 25K.  Some of you have offered financial support and thanks to my great friend Marla there is a go fund me page (here) people have donated to.  Those fund will help to pay for the out of pocket expenses that we are facing and have faced so far.  Because there is no way anyone can buy me dinner,  visit me when I am in isolation, or send flowers (I cannot have them around me due to germs) so the $ is a true gift of love that I can use and be/am thankful for.

I have had people call and offer their blood and/or stem cells.  One amazing lady said tell me where and I’ll go get tested to see if you can use hers.  How self-less is that? That call still makes me tear up knowing the level of love and care she feels for me.

The boxes of items from my cousin and her church ladies have been wonderful and totally fun and kind.  A prayer shawl, more prayer cards then knew they made, crosses (some hand made) beads, coins, charms and all sorts of items have really overwhelmed me at times.  There is so much love in those boxes.  Thank you.

Recently, one of my good friends here in Fort Collins. took the gift of a scarf to the local priests and had it blessed.  It comes with scripture and love and I will be bringing it with me to Chicago as well. Almost need a separate suitcase for the gifts folks.

Finally, I know in churches, living rooms and mediation spaces all over the country you are lighting candles, saying prayers and sending healing wishes my way.  I want to say don’t stop.  Please keep those going.  I believe in each and everyone of them.  The disease I am riding my body is strong, very strong but you all and my faith are stronger.

Betsy