Tag: Betsy 2.0

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The Miracle of Harvest Day

Monday February 19, 2018

The day began at 6AM with me waking up so super excited I could hardly contain it.  I am so ready for stem cell harvest day.  So we began today the same as the last 5 days, shots to keep those stem cells hopping.   Rocky did an amazing job each day of administering the shots carefully, completely and with the most love ever!  Rocky Rocks!

Then its pack and off the our new favorite Chicago location, Northwestern Medical center.  Truthfully these folks are amazing.  

Packed up my bag like I’m off to camp for the day. Great stuff thanks to great freinds

Top shelf care all the way. One person nicer then the next. 

First its blood work to make sure all my numbers are good enough to donate my own stem cells back to me.  The ups and downs the last two weeks of all these medications have made me a science project changing white blood counts, hemoglobin, platelets, red blood cells and so much more.  You see everything has to be perfect or else they need to add something or take something away to get me ready.  Here’s the bottom line…..I was perfect as I was. 

Next it’s time to get a catheter put in my neck to take and receive blood.  I think I’ll skip a super close up pic but it is cool as anything!!!!! It has there ports, an “inie” an “outie” and an extra.   Blood coming and going.  turns out the clean through the entire volume of my body’s blood 3 times.  (hope that doesn’t gross anyone out.  I still thinks its amazing)

Not my prettiest Picture but you can see my connections sticking out of me. They made today so much more manageable.

Mainly today was spent in a recliner hooked up to a machine for 5+ hours letting medical science do its deal.  Amazing care by my wonderful partner in all things Rocky.  Here he is giving me a foot rub to sooth away stress.  Netflix entertains, Facebook makes me feel connected. and ALL I can do is count my blessings.  I am so flipping lucky!

Loved beyond measure. Spoiled beyond reason.

So they need at least 2 million stem cells.  Looks like I have produced those and then a whole lot more!  The are thinking over 10 million.  I will get the final number later tonight and that number is 21 million +.  Then they will take out the catheter and let me leave.  I can leave the medical center and Chicago.  We will  actually leave tomorrow.

A few things were discovered.  I am as of right now this minute no longer immune- compromised.  My blood shows my blood counts better then when I was here to be tested in October.  That is a HUGE relief to me.  They say for me to live my life like normal until I come back here in April.  That I am no more vulnerable then the next person. I sure am way more blessed.

I am standing and rocking this harvest with Gods and all of your help.

Stay as healthy as possible but if I get sick before I come back I need to get well before starting the transplant. We return to Colorado tomorrow night and will live the next 5 weeks with care until I get to return for part 2 of this cool process.  Did I tell you how cool I think this is?

Thank you all for your love, your encouraging words, your messages.  I can not imagine how someone goes through this without a tribe. You are mine!

And that’s a wrap!!!!!
That bag hanging up there on the top left of the picture has 21 million + stem cells in there to get rid of my Scleroderma in April.
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Thank God I’m a Woman!

My very first thought this morning when I woke up, still rolling around in the bed this morning was simply, Thank God I Am A Woman!  Being a woman means I get to have a monthly visitor.  I think we used to call it “our friend” (who the hell came up with that stupid name? saving for another day).  Well without going into details about my “friend” I will simply say that it prepared me for body aches out of nowhere. A slamming in my face, take my breath away ache.  On the upside, cause you know I always have an upside, I have had experience handling the discomfort, pain and knowing that this too shall pass just like most women walking the face of the earth.

My extra little pop quiz in life has been the bonus of this disease called Scleroderma.  My long (almost 14 years) history with having Scleroderma has taught me to be one tough warrior woman.  Pain in the past I thought was literately going to kill me, DIDN’T.  So in a very sad, sick and oh my goodness what a shame way, I can handle this level of what I would call this morning, discomfort. A 2 on the scale.  Tylenol will fix this.  People who are chronically ill will get this.  Being able to handle, still function and live life even when not 100% is how I operate daily.  Or else I would have curled up and cash my ticket in by now.

Let me get to what is happening now this weekend and the last few days for all of you who are following along with what I am calling my “journey back to health”. I began the shots on Friday.  They are shots of a drug called Neupogen and it is a series of shots for the 5 days leading up to and including the morning of harvest of my stem cells.  The drug helps get my stem cells to move around a whole lot more then normal especially into my blood system which is where they will pull them from on harvest day medically called collection.  My harvest day is Monday Feb 19th.

So I get the privilege and honor of donating my own stem cells to myself.  I will come back in April to get them put back in my body and those will be additional blogs at that time for sure.

With all these shots comes crazy side effects and I am still working on the side effects from the one massive dose of chemo they gave me a week ago.  The reason they gave me the horse size dose of chemo was to begin the mobilization of my stem cell out of my bone marrow.  So to be honest, the shots aren’t bad, they are sort of no big deal to take but the entire procedure, process and all the medications both to do things and to prevent things, that’s take some warrior energy for sure.

Because of the chemo I got 8 days ago I will loose my hair.  So I got a great short cut from a nice man named Dennis at Salon 161 that is on the same city block as the building that houses most of my doctors.  He was super kind, caring and understanding about what I needed in a haircut and for why.  What a blessing to run into this guy who has been cutting hair there for over 32 years.  Hoping that the shorter cut will lessen the shock when it begins to fall out. I am still expecting a shock and needing time and tears to adjust.

Great view from Condo

For the last 24 hours I have stayed in the condo 100% because my white cell count is low thanks to the chemo doing exactly what it is supposed to do.  In a few days after the Harvest I should be fine being out and about just need to watch out for sick folks cause I have to stay healthy to come back here in April and get these “stemies” (the cutie name for stem cells in these circles) back.

The goal is for 2 million or more of these little suckers to get harvested through a tube placed in my neck on Monday.  Right now  I am growing them in my body.  Reminds me of the wonder of growing a child. Our bodies, science and, if you believe like I believe, God are frickin amazing!   Until Monday I am in time out.  I am happy in time out.  I will watch more movies, enjoy more olympics and nap. Thank you all for your comments both here and on Facebook.  You words, sharing, connections and support are simply priceless.

 

 

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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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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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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.