Category: Stem Cell Transplant

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 am thankful for.  This PICC line for sure is one of them.

 

Thank you for all your love and support.  I could not do any of this without you!
Betsy

 

 

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 up for Easter play in between her parents legs, arms and using them both for a jungle gym it became crystal clear.  Dancing in the Safety of Faith and Prayer.

You see last week I came to as close as I have come, so far on this journey, to loosing faith in the process of becoming Betsy 2.0.  It was a seriously HARD week.  Lots of finishing touches at home, work and life before I check out for the most part to go get about the business of healing. When I look back now I see where I was trying to step up and into the drivers seat.  Drive the car, run the show and the biggest motive that always gets me twisted around, to stay “in control”.  Makes me laugh out loud right now when I know just how little control I do have.Reminds me of a saying, Baby you want to make God laugh, tell him your plans.

I need to trust my God has me. The exact way that little girl in church this morning knew her dad would not let her fall.  That’s my loving higher powers plan I just know it and I need to trust that all the way to my toes.  HOWEVER and this is a huge “yeah but”, I do not have a telephone number to call God and say hey, whats up, you got this right? Although, on second thought, I actually do have that number.  It is the same number of all of you.  The ones who are “sending prayers and love”.  You folks who have put me on prayer lists, are lighting candles for my procedure, and helping financially get me through this.

I was on the phone Friday with a great friend I have known since 1981.  She told me a story I want to tell you so you can see the power, strength, and mightiness of my God who’s got this for me in so many ways.

She was telling me when I called her earlier, and she didn’t answer it was because she was on with her CPA. Telling her CPA that she felt she should take my call (event thought she didn’t) because she always answers when I call because I am going through this stem cell transplant and she is living it with me.  (You see my friend is and has been a nurse forever.  I have given her access to read all my test results and help me understand the details.  She is THAT friend I call and ask all sorts of inappropriate things to cause, well, she knows me completely and loves me anyways.) Back to the story, her CPA asks my friend for my name and she tells her, “Betsy Craig”.

Turns out this particular woman has heard my name before and some of the story of my Stem Cell Transplant.  All the way to Columbia, MD from Fort Collins, Colorado.  Her synagogue has been keeping me in their prayers.  Someone in Howard County, MD has added me to a list for folks to pray for me, my health and doing well with my stem cell transplant.  I really believe we do not need Kevin Bacon to be connected.  This was only 2 steps away.

My job is to keep on dancing in the safety of that faith through prayer and all will be well.

Your help, by adding me to prayer lists, sharing that fact with me along the way has been a true amazing gift.  Here is a listing from Carrollton, TX.

The days ahead are dark and a little uncertain but with you lighting my way with your love, prayers and good thoughts together we can and will get through anything.  Even Stem Cell Transplant to kick Scleroderma to the curb.

Happy Easter. I thank and love you!

Betsy

 

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 out look then for those on the outside looking in.  Most days my chronic illnesses (now I have 3 thanks to the first one, two more have joined the party in my body) don’t stop me much.  Yes I hurt.  I am sore. My fingers and hands don’t move the way yours do.  When I simply walk down the street I pant and try to catch my breath. Walking up a flight of stairs is tough without a pause (at least one).  My heart flutters strangely.  I get charlie horses in my chest that feel like (but are NOT) a heart attack.  Man those hurt!.  I have red dots all over my face and body from the Scleroderma.  No hair anymore right now, thanks to chemo. And what I am about to walk through to cure my main disease, Scleroderma, will be a challenging procedure.

Do I think I have it rough?  NOPE!  I sure don’t think I have it rough. I have a disease that was supposed to kill me but didn’t.  I have already lived the most amazing 53 years on this planet both great stuff and tough stuff.  It is all the pieces and parts that make up my one precious life.  It reminds me of a saying I heard in 1985 I have never forgotten.  A lady named Madonna said to me one day when I was bitching about breaking a fingernail or something equally as major as that.  She said Betsy “when things are Fu*ked up, get up, and keep on keepin on girl”.  32+ years later I can still hear her southern drawl voice, see her bright blue eye shadow and her blond big hair as she told me that line. I love that line. I live that line. I will continue to walk that line.

So NO I am not choosing to act strong, turn a blind eye to being sick or trying to struggle through it all.  This is the only way I know to live.  With gratitude to each day, every challenge and counting all of my blessings.   To look at what I get to walk through and know I am one of the lucky ones.  There is a treatment out there now, even thought it is still experimental its an option for a gal like me.  I was given the chance to try this.  Insurance finally agreed to pay for it.  The costs are high but the love of friends (some of you for sure) have made that even possible.

A friend has given us a condo to use while in Chicago, he is simply amazing for that generosity.  We used in in Feb and Rocky will use it while I am ion the hospital for most of April then when I come out of the hospital I will go back there to recover for 10 days.  We needed a private charter flight to get me home the very safest way possible and not have to put me in a plane with 140+ different people’s germs.  That’s far from cheep.  The go fund me has almost completely covered that cost so to all the friends that gave so generously THANK YOU!  As a result of your financial help I will be able to return home to Colorado from Chicago as safe as possible.  Our lives are such that we are blessed with great jobs and an amazing business.  We have been able to pay for the daily expenses of this process and even some of the larger expensive extras out of pockets without huge issues thank God.

So bottom line I am good to go as I know my God’s got this. Pray for me or more importantly the doctors at Northwestern Medical (Dr Richard Burt) if that’s your jam, wish me well, send up a good thought, wish or light a candle but I am NOT unfortunate because all this happened.  I have learned so much about myself, who will stay beside me no matter what, my marriage, my friends and family.  Each lesson has been a true gift even if it didn’t look like a gift at the onset.

Looks like in a few short days, I will be starting a major time out of my life to receive my stem cells back and begin the Phase 2 of this entire miracle I get to do. Until then I go about my normal life and activities one day at a time……

Have an amazing day and when you breath deep and easy today know that I am going to do exactly that very very soon.

With Love,

Betsy

 

So it looks like March is all about waiting, preparing and practicing my faith walk through the hall way that leads to Chicago for April.

Reminder of next steps:

Tuesday, April 3^rd We are back in Chicago and I get to acquire a PIC line for treatment.

Wednesday April 4th (Day – 5) check into Prentice Women’s Hospital at Northwestern and begin the countdown to stem cell transplant with 5 days in a row of seriously nasty chemo.  The point is to get my immune system to as close to zero as possible while still leaving a small amount in case for some reason my stem cells can’t be returned to me.  (This is crazy highly unlikely)

Thursday April 5 – Monday April 9 (Days – 4 to Day – 1) to get me close to zero on immune system.

TRANSPLANT DAY Tuesday April 10^th I get my stem cells back. and many call this day my new Birthday.  It is actually my 1/2 Birthday.

Wednesday April 11^th to April 21^th or longer ?????

I get to start to rebuild my immune system making it strong enough to go home.  Then when home I must rest, recover and NOT be anywhere near anyone who is in any way shape or form sick.  This can cost me my life and where folks perish so no kidding.

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This past Friday I was honored and lucky enough to celebrate 15 years of marriage with my husband.  Get to walk through all this with him at my side.  Amazing.

Until April 3rd I get to hang out, see folks, work some, rest plenty and enjoy this one precious life.  So many of you have sent me gifts and love.  I am blown away by all of it.

Here’s a pic of one of the great head covers I received, this one from Lee and Walt, Thanks you two.

I am trying to get all the Thank You Notes out and hope I don’t forget anyone’s kindness or generosity.  Please know I am bless beyond words and description thanks to so many of you.

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Returning to Colorado on Tuesday 2/21 was supposed to be simple and it turned out to be anything but.   That day we packed, straighten up the condo (or at least Rocky straighten up and I pointed a lot), and grabbed a car to O’hare to fly straight home.  It’s was raining and anyone from Chicago knows a little rain makes all traffic come to a stand still.  Tuesday’s driving conditions were no different.  Took a long time to get to O’hare.

Once at the airport, curbside service was absolute perfection and we wandered inside to see about getting me a lift to the gate area also known as a wheelchair.   You see that airport is flippin huge and I was beat, totally beat.  It was super simple to get a wheelchair and even set one up for when we landed in a few hours in Denver.   I was happy to save the steps and let someone else get me there.  Off we went.  We were wiping through TSA precheck security just when I got the first notice, flight delayed.  Not a shocker but a bummer, oh well an hour and 15 is not so bad.

We decided to head to the Red Carpet Club and try to relax and wait out the delay.  What was just over an hour became close to 4.  The wait was manageable but I was getting more and more exhausted by the second.  Also for some reason the Red Carpet Club became much more like a local child care center with families with 4 and 5 kiddos kept rolling in.  Each and every one of those young kiddos I looked at like they could give me the cold, flu or sickness that I simply could not afford.  I kept moving away from them but it truly became a game of wack a mole.  As soon as I got away from these 3 then 2 more would pop up right next to me.

We finally got on the plane and as we climbed to cursing altitude I got ill and spet the entire flight from Chicago to Denver with my head in a bag.   Landed in Denver after midnight, rolled to baggage claim, grabbed bags, car and headed to the mountains I call home.   Getting to bed by 3 AM was not a great thing for me either.

The next day, I was given this amazing gift from the great folks I get to work with on a daily basis……What an amazingly thoughtful gift I am saving for Aprils’ phase 2 adventure.

By Wednesday night it turns out I had full blown hypoxia that felt exactly like a heart attack. All the same symptoms, indicators and warning signs were present and man was I feeling horrible.

Amazingly, Dr Richard Burt was covering the call that night when Rocky called and this amazing doctor I am trusting with my stem cell transplant took the call, encouraged us to go to the ER and check out what was happening.  Then 30 minutes later he called back tell Rocky he just went into all my records and really thought my heart was OK but, still to get checked out. Then at 5AM our time he called Rocky one more time to check on me.  He cares her really really is one of the good ones.

When I got to the ER my pulse ox was between 68-70.  Not good but helpful to know what was the problem and what the answer would and could be.  I spent Wednesday night in the hospital, getting admitted after 3AM, catching 2 hours of sleep but being able to rest knowing what was the medical challenge I was facing, why and what was the solution.  Simple oxygen.  Lots and lots of yummy, healing, necessary oxygen from a machine until my body could bounce back from the Tuesday from hell and make all the oxygen it needs without a plug.

Here’s is the icing on the cake…..While in the hospital (on day 14 since the chemo I got in Chicago as part of the mobilization and harvest for stem cells), my hair started to fall out.  I was on a race to check out of the hospital so I could go home and shave my head. I swear I love God’s timing because if I have 3 things to focus on than no one thing becomes that big of a deal.  I needed a haircut, oxygen and sleep in some sort of urgent and major way.  I got all 3.

Today is Sunday.  I have been hooked up to a breathing tub for 4 days now.  My pulse ox is almost normal all on its own, my hair is almost all gone and man have I slept!  Yesterday,  Jennifer and Liz came up to clean the house and get the dust out for me.  So thankful for the help.  That’s the real help I needed with re-entry. Others provided meals (despite me saying we didn’t need them) food is love and I appreciate the love.  Puzzles, books and electronics are keeping me busy and very much entertained.  I am being loved, feed and cared for beyond anything I could have ever imagined.

Thanks to you folks who donated to the gofundme for me I was able to purchase a portable oxygen machine for use here while home when needed, on the plane back to Chicago for Phase 2 in April, while in Chicago in April and early May and then when I return home.  We are not broke folks, we are blessed with great jobs, careers, a thriving company and many extras but the costs of this process are huge.  Thank you to those that have selflessly assisted to make that burden a little lighter. We have eaten, taxied, paid thousands in co-payments, and travel thanks to this gofundme already.

I will be posting/blogging only weekly at most until I return to Chicago for Phase 2 beginning April 3rd.  Until then I have full immunity back, the folks at Northwestern want me to take care of myself but NOT to live in a bubble as I need some defense system functioning before I start then next phase.  Looking forward to food, work and my life here in Colorado for the next month.

All the very best folks,  love to you All!    Bets

 

 

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