Category: Speak

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Speak Stem Cell Transplant

Awesome Mixed with Not-So Awesome

The Loves of My Life
The Loves of My Life

So as I try to figure out how to put into words what is happening now I am searching for the right words.  The words that are wrapped in gratitude.  The ones that don’t make me sound like a victim.  I had the wonderful pleasure of having my daughter come visit and spend time with her.  Always saying goodbye is hard.  This time was so much harder.

Can’t wait to see her again.

In the mean time I can’t get my fever under control.  It spikes, then Tylenol brings it down then I feel like a hostage because I wonder if grabbing a burger at Shake Shack is what caused the fever….I want to tell the docs all about it (and I have just waiting for their next steps while I type this)  but there is a HUGE fear that they will tell me that to have problems this early on will mean I can’t go through with the stem cell transplant.

You see no matter how positive I have grown to be in my life there is still that small voice of doubt in the back corner I want to ignore but listen to anyway.  We shall see where this leads.  Right now I wait.  I wait for the Nurse Practitioners to call as that was the response.  We will call you in a bit.  I appreciate so much that they read the emails and answer quickly.  I appreciate even more that her answer was not one of get to the ER immediately.

They have seen it all.  Its new to me.  My word this year has been trust, I am trusting the process and these people with my future, with my health and with my life.  Its not a small trust. It feels exactly as huge as it is.

I will post more when I know my next steps.  Thanks for the continued support all!

Update: Went to hospital this afternoon. lots more blood,swab and other types of tests.  They cant seem to understand the fever either but to them a fever starts at 100.4 so until I hit there I should chill (no pun intended).  Back home in this amazing condo.  sitting close on the couch with my favorite man watching the Olympics unfold as great mind diversion.

Feeling better in both physically and mentally.  Time, sleep and love heals a whole lot.  Thanks all!

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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!

 

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Speak Stem Cell Transplant

Trust to My Toes

Each year for the last few years of my life I have picked a word to represent the year.  It sort of happens magically.  Some point in December I get a clear intuitive message that the next year will be about …… and then a specific word comes to me.  In 2017 the word was JOY.  I say it clearly and really was amazed at how joy showed up in places when I least expected or was looking for it. 

2014 was gratitude.  That was the first year I did a facebook Gratitude post daily and just that act of focusing on gratitude, finding a reason to post publicly about it through the magic of facebook made it a year filled with gratitude beyond anything I could have imagines.  There was something so powerful about that simple daily act.  Publicly putting it all out there to hold myself accountable for the frame of reference mind change.

2018 has already been all about my word for the year.  That word is Trust. I must trust, I must take trust to an entirely different level.  I must have trust in the entire process and that trust shows up for me in actions of faith.  Years ago I heard that faith is believing that someone can walk a cross a tightrope extended 30 feet off the ground.  I can have faith that they will make it from one side to the other safely without falling.  TRUST is agreeing to get in a wheelbarrow that same person is pushing across that tightrope.  I am trusting, hoping into the wheelbarrow and going for the ride of my life.

This morning I am off to Northwestern Hospital to allow them to begin this amazing Stem Cell Transplant.  You see part on is “mobilization”.  Got to get the stem cells, from my bone marrow through my blood, to get a moving.  This is a chemistry set type action that I am in awe of.  I may also be pissed about in a few hours but in the calm before the storm, in the 4AM quiet I am awestruck.

The city sleeps and is experiencing what they are calling a blizzard thanks to snow.  I am wide awake feeling beyond grateful that I can do this procedure, I qualify, that my health insurance is paying, that I am strong enough and that I have enough trust in all around me to go for it.

Here goes everything and I can hardly wait.  Bring on Phase 1!
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Stem Cell Transplant

Laughing while NOT on vacation

So today was a super interesting day.  I woke up in a beautiful condo a friend is letting us use in the “south loop” of downtown Chicago.  It has everything we need and most of what we  would want.  The view is amazing!  The space and privacy is a welcome gift.  We arrived to food galore from a friend to make sure we were stocked.

It feels like vacation……

But it’s not.

Today was a lab visit for 17 tubs of blood.  Instead of getting upset about the number of tubs I thought, how cool will take a picture to post to all of you.   Then it was off to the x-ray team to look at my lungs.  You see before they give me a massive amount of chemo on Friday they must make sure I am not sick.  Because well that would suck. Getting the chemo on top of an illness will be horrific and way more drama then anyone wants starting with me.

Isn’t this mask awesome? Love the flowers.

Once we were done at Northwestern Medical in downtown I just needed to walk.  Get fresh air.  You see I am wearing one of those awesome flowered cotton masks every minute I am in the medical center.  There are sick people there and I can not catch anything or else….  Once outside I take the mask off and breath in the city cold crisp air.

It was off to some shopping then drop things to the condo and chill til dinner at a clients a few blocks away.  Wonderful time eating pizza with my hub and then a quick meeting with new friends to put my perspective glasses on and back to the condo.

My favorite part of the evening comes at tubby time.  Just like a 4 year old I love being in water.  Maybe it was because for almost a year it was the ONLY place I could move my hands/fingers without pain? Or maybe because it makes me feel safe and comforted? Or maybe because it is a place for only me and the world goes away?  Who knows all I know is there is the best tubby ever here and I get to use it.

Gratitude for the simple things will get me through this I just know it.  That’s all today.  Tomorrow brings one more standard appointment (a vein check whatever that is) and then I get to see Dr. Richard Burt.  My transplant doc.  He’s the one who started this miracle process a few years back and hopefully he will tell me medically all systems are still go.

Night,

Betsy

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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

 

 

Categories
Stem Cell Transplant

Timeline for Betsy

Stem Cell Transplant (SCT) Steps

Steps Completed to Date:

Once I found out that SCT could possibly help me lose my Scleroderma for good I…

  1. got a referral from my main Scleroderma Doc in Denver,
  2. did a phone interview with Carol at Northwestern Medical (NwM) and was asked to send paperwork on medical records for a paper review
  3. Sent paper and passed the paper review as a good potential for the still very experimental treatment,
  4. Flew to Chicago for a week of in person tests, procedures and meetings (tons of fun!)
  5. Accepted into the study and invited to become a stem cell transplant patient using my own stem cells
  6. Make plans to go to Chicago for the procedure in 2 steps:
My SCT will be in two very distinct parts.

Step 1 February

Monday – Thursday Feb 5-8, 2018 Go to Chicago for tests, appointments and final meeting with the SCT doctor, Dr. Burt.  Also, must make sure I am any kind of illness, infection, cold or any sort of sickness free 100%

MOBILIZATION: Friday Feb 9th Get admitted to hospital overnight to receive a massive dose of chemo and stay until OK to leave the next day, Saturday Feb 10th

Saturday Feb 10th to Tuesday Feb 13th recover from the chemo.

Wednesday Feb 14th to Sunday Feb 19th Medication to build up the stem cells in my body

HARVEST stem cells on Monday Feb 20th – through vein in neck they will

  1. Take out some (not all) of my blood
  2. Separate out my stem cells
  3. Give me back my blood minus the stem cells
  4. Take my sweet precious stem cells and put them in a deep freeze until transplant day
  5. Let me go back home to Colorado to recover, rest and be good to myself

NOTE:  The Chemo on Feb 9th is supposed to be strong enough to cause me to lose my hair. (I won’t freak if you won’t) but you are MOST welcome to send a hat my way

Betsy Craig c/o MenuTrinfo, LLC 155 N. College Ave. Suite 200, Ft Collins, CO 80524

Step 2 April

If fully healthy, no sore throat, no bugs, no sneezing, no colds, I am not sick in any way then…

Wednesday Thursday April 3rd Go to Chicago and acquire a PIC line for treatment.

Thursday April 4th (Day – 5) check into Northwestern Medical Center 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)

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

TRANSPLANT DAY Tuesday April 10th I get my stem cells back.

Wednesday April 11th to April 25th 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.

Note:  I am waiting through March because my doctor will not be in the US to do the second step in March, so I wait.

My stem cells can stay frozen and fine for a long time so 5+ weeks is no biggie

Yes, I am scared but as a recent angel used to say “My Faith Outweighs My Fear”.

No plants, flowers, raw veggies, fruit, no food un cooked, this is a seriously dangerous time.

When all is said and done I will no longer have the disease Scleroderma.  That will also stop the damage to my heart and lungs Scleroderma is causing.  My future will look so bright I will need to wear shades J  No doubt.

Categories
Stem Cell Transplant

Stem Cell Transplant: The Back Story

In June of 2017 I made a decision to join a fundraising walk for Scleroderma in support of a friend.  You see even though we share this horrible disease, she had seen her disease attach her foot and in short order lose her leg.  My buddy, Eileen had the very best doctors at Johns Hopkins and if there was a way to save it I have full confidence it would have been saved.

So when I saw this walk to raise money for Scleroderma was coming up in 10 days in Denver I jumped in once again.  I used to support those walks yearly but stepped away for a number of reasons none of which mattered this past summer.  I was able to attend schedule-wise and my feet worked and I had both so I decided to walk.  Up went the fundraiser page and off I went to walk.
Turns out that act one to support for a friend, changed my life forever.  To think I almost missed it.  Simple seconds and inches would have made it not so.

At this walk I met a lady who told me about Stem Cell Transplant.  You see I was having a bad lung day that day thanks to my lung disease brought on and made worse daily by my Scleroderma.  She told me point blank that there was new hope for people like me through stem cell transplant and I needed to check it out. She lead me to Dr Richard Burt at Northwestern Medical in Chicago.

As luck would have it I had an appointment with my Scleroderma Doctor in Denver the following Wednesday.  Through many years I have been thought hell and he has been the quarterback of my medical treatment.  I asked him if stem cell could help me.  He agreed it was well worth a look and went about setting me up with the first official step, the referral to NWM in Chicago.
Next step was a phone call screening that I PASSED then a paper submission of hundreds of pages of medical records.  PASSED that as well. Next was to hope a flight to Chicago and endure 4 days of testing.  One day I will write the blog about the testing week but for now let me just say, PASSED.

Then the heartbreak.  Insurance said NO. Now what? We would of course appeal but what in the mean time.  Wait?  I had learned in Chicago that Scleroderma had caused the much dreaded heart disease now called PHA.  That was not good and both the heart and lung diseases were going to simply continue until I make a drastic change.  In my mind and based on 14 years of trying everything single thing else….stem cell transplant is my last hope.

Well I looked at two things closer.
1. I have a successful company that I could do some owner equity to get a chunk of cash out to help but was not unlimited
2. I had retirement accounts and finds in my husbands name that could be borrowed against or used.

I mean whats the point of retirement $ if I am not going to live long enough to use it?

We (my husband and myself)  have gathered the $ and are looking to get all the details in place.  It is a long long process.  We will need additional $ above and beyond that 100K+ for lots of stuff, co-pays, medicine both covered and non covered, personal care, food, travel, some hotels, keeping 2 houses going, the list goes on and on.  I don’t want to bankrupt our future but for me, I want a future.