Unstoppable

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 and love for her mission.  Her mission was to make me more comfortable and did she ever.

The nursing staff her blew my mind.  Pictured are two of the many amazing nurses that cared for me as if I was family.  Blanca, on the left of me and Lori on the right here I am happoy in the middle of these two.  These ladies and many others just like them can get you through anything.  They have it.  Done and done.  That’s the confidence anyone would want and I found it bedside on Day 0 and day 1 with these two.

Often I say that my God shows up with skin when we meet and interact.  I can see my faith through your eyes.  I do not have the ability to flip the glasses and see into me except on how I am reflected by you.  My image and attitude was shown to me in true loving colors at every turn since I first connected this amazing establishment.  These professionals are just the tip of the iceberg.

The last two days I have had the pleasure of the company of a true young professional, Emma.  Emma is passionate about her work, love love love what she does and never ever made me feel anything but her total #1 priority.  She explained everything I asked about even when I asked the same thing a few times thanks to chemo brain my mind was having trouble remembering.  I have questions.  Those that know me know I am a curious sort.  Emma answered questions, shared information, encouraged me to stay positive, gave me hope, care and love through all of her actions.

Right now I am sad I might not be here through next Friday night, her next night working.  I want every positive outcome for this young ladies career.  I also look forward to when our paths cross once again.  I just know they will.

 

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 and other juice to mitigate the side effects of the chemo.  Those pre-meds (what this sports nut calls pregame) starts at 10AM.  Get this drug on board to protect the kidneys, that one for the liver and oh don’t forget all the ANTI- this and ANTI- that meds.  They keep simple things at bay to prevent infection and dire consequences. And for dessert, gallons and gallons of my personal fave PREDNISONE 🙂 but even it has an anti-agitation chaser to keep me smooth.

As I am typing this I think of the amazing doctor and wonder “Does Doctor Burt worry each and every time he does this?  Is it now so normal he doesn’t stress?”  I would stress if I were him but oh well, let me come back to the final chemo day.

The poison I got yesterday (“Day-2” Monday) was that cytoxan (cyclophosphamide) once again.  I can remember it was one simple approx 70 minute push of the drug back in Feb that took ALMOST every hair on my body.   Rocky says it missed a few 🙂  It also did the the primary job: prep my body for stem cell business.  In February it was for harvest, and yesterday was to finish driving my immune system down toward oblivion.

I know in my soul it will do the job it was meant to.  You see Days-5, -4, and -3 were also chemo but it was a different flavor of chemo, fludarabine.  Still toxic metal, still strong enough to get the job done but chemo that didn’t stress my heart as much.  Scleroderma has started to damage my pulmonary system (lungs and now heart) so the knowledgeable staff chose the “heart-safe” protocol for me.  It’s not their first rodeo!

The chemo came, I took it like a warrior pumped up by my God, the love of all of you and an unshakeable faith.  Not once did I doubt for a millisecond that it was the right thing.  I have known that if I was granted the opportunity then this is the answer for me.  Rocky, Victoria, and Josh were here to support, family close has helped so much.  I am so blessed to have the support.  Below are a few pictures from the evening walk when I was up to doing my daily laps.

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Tomorrow (Wednesday) is “Day-0” and I get my harvested stem cells back.  That’s what all of the last year has been leading up to (well, since I learned about this procedure last June :-).   Grateful almost beyond words for all the opportunities and paths that have been gifted to me, I can only say….

Thank You – Thank You – Thank You – Thank You – Thank You

 

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 11^th 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 12^th to April 21^th 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 undivided attention. Turns out- it works. Victoria’s presence here with me overnight allowed me to give Rocky a much deserved timeout in our beautiful home away from home.

Each day they encourage me to move and I of course have set a goal of 10 laps around the floor. I have made some nice friends here and say hi on my way. 8 laps down today, 2 more to go tonight. Netflix and daily check ins with my girls help the time pass.

If you are reading this, do me a special favor please. Tomorrow, starting at 10am CST, send up an extra prayer for the harder chemo. I am tough but it just might be tougher.

Love you all,

Betsy

 

 

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 this is I get to have a visit with my daughter, Victoria, and each moment spent with her is a gift.

Thank you all for the love, prayers and messages.

Betsy

 

 

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