Grace for Stem Cell Step 1

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!

 

13 comments

Really interested in your treatment thanks for posting. I’ve been down that chemo road and did lose the hair and would you believe, when it grew back it refused to go gray.

Hoping the chemo side effects stay away. Glad to hear Victoria will be with you as well. Hang in there ! Can’t wait to meet the stronger healthier you!!! Love you . Prayers that the next few days go easy on you ❤️

I’m not going to mispell anything since apparently this neandrathal (that one doesn’t count I don’t know how to spell it) comment place doesn’t let me edit! I love you girl! You are constantly amazing me with your strength and bravery. That just a half hour to type cuz I can’t edit after! 🤗😋😷😘

Hi Betsy, Which hospital are you using. My friend is one year post transplant from Northwestern. What chemo did they use? I had busulfan and flurabadine. Let me know if I can help. I just coached a patient through the process at Stanford University Hospital in San Francisco. Just focus on getting through each day. Best wishes, Nick

Nick you are awesome! How kind an offer.

I am in Northwestern Medical under the care of Dr Richard Burt. Hes amazing! So far I have only spent on night in the hospital to begin the mobilization of the stem cells. They used: Cyclophosphamide on Friday then this coming Wed I start 6 days of Neupogen shots to get those stem cells moving, growing multiplying and ready for “harvest”. My treatment is the kind where I get to be my own donor and Monday the 19th of Feb is donation day.

I go home Tuesday the 20th (as long as they get enough stem cells to put in the deep freeze for the transplant the first week of April. I believe I get that flurabadine in April with more Cyclophosphamide. Thanks for the offer of help. Right now I am just chilling out and trying to not make any thing worse or harder. Sitting still sucks!

Loving your blog and utter realness here, Betsy. Your friends will be with you every step of the way. Call on me anytime you need support, med info translation, research, etc. <3!

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