Tag Archives: multiple sclerosis

Shout It! Shout It! Shout It Out Loud!!

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Shout It! Shout It!  Shout It Out Loud!!

This is a very quick update to let you all know that I’ve just received the most exciting news!!  My HSCT for MS story has been included in a newly published book on Amazon.com along with the stories of 20 other patients who received their healthcare abroad.  It’s titled…

Healthcare Elsewhere – Inspiring Medical Tourism Success Stories.

Right now, they are running a promotion on the Kindle version for 99 Cents! (I’m Chapter 5).    Please click on the image below to get your copy of the book for your phone or tablet today. Even if you don’t have a Kindle, there is a free Kindle app that works on EVERY system, mobile to desktop, Mac to PC.   Woo hoo!!

 

Disclaimer…I received zero compensation for my contribution to this book.

Celebrate Good Times…Come On!

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dallas interview 2

The hotel manager graced us with a bucket of champagne to celebrate our accomplishments.

With so much to celebrate as many Moscow veteran HSCT patients approach their 1-year, post-transplant birthdays, a select group of my SOFA (Sisterhood of the Fedorenko Alliance) sisters, who are far enough into their recovery to safely travel, took the opportunity to meet in Dallas to savor our successes together and, for several of us, meet face-to-face for the first time.  These are women who have been there for each other 24/7 for over a year, before, during and after their stem cell transplants.  One of the sisters, Kristy Cruise, from Australia, comes to the U.S. once every two years to visit her in-laws.  2014 was one of those years and we didn’t want to miss out on a chance to gather. What we thought was going to be a relaxing few days, turned out to be a mini media tour with tons of sister laughs, good wine, good food and a few tears sprinkled in. One of the sisters, Vicki Wilson, who flew in from Little Rock, Arkansas, contacted several television stations in the Dallas metro area to share our story of triumph and the unique bond that we all share.  ABC and CBS heeded the call and came to interview all of us at the NYLO Hotel where we were staying.  The ABC segment featured all of the sisters together, whereas, CBS decided to take the local angle and featured our very own police officer, Sheli Godbold, who lives in a Dallas suburb.  We kept the hotel staff hopping and the hotel guests guessing as the local media and their camera crews set up their encampments throughout the hotel.  I was even stopped in the lobby by a group of business associates who had seen us on television and wanted to know all about HSCT.  Score!!  Media tour success!!!  Both interviews can be viewed below. ABC Dallas Interview

During our ABC interview.

Click photo to see Sheli's CBS nterview.

In addition to being picked up at the airport by my gracious sister, Lisa Stallings, who gave me an awesome tour of the Gas Monkey Bar & Grill, then Garage, with her BFF Cindy Cathey, I had the privilege of meeting the woman who made it all possible for me to find out about HSCT and, in particular, HSCT in Moscow, through her fantabulous blog, Amy Goes Ninja on MS.  It was an incredible moment with lots of chills (at least for me) ha ha, and that comfortable feeling that I had known her forever.   The entire trip was a dream come true for me, and, quite frankly, there is no way in hell that I could have made this trip alone just a little over a year ago, without a trekking pole, no less (see pics).

Taken after my not-so-graceful, yet, victorius trek through the airport.

Taken after my not-so-graceful, yet, victorious trek through the airport.

I took lots of wonderful pics throughout the week, so, I’ve chosen my favorites and have posted them below (they are clickable).  Until my next post, cheers to HSCT!!

Me with the Ninja Extraordinare, Amy Peterson

Me with the Ninja extraordinaire, Amy Peterson

Vicki & Kristy

Vicki & Kristy

Kristy, Amy, Sheli

Kristy, Amy, Sheli

Vicki and I at Toulouse

Vicki and me at Toulouse

Me and Lisa

Me and Lisa

Me with Kristy

Me with Kristy

NYLO Lobby Bar

NYLO Lobby Bar

NYLO  Entrance

NYLO Entrance

NYLO  Entrance

NYLO Entrance

NYLO  Rooftop Pool

NYLO Rooftop Pool

NYLO Library

NYLO Library

Bubbly Sunset

Bubbly Sunset

This Opportunity Comes Once in a Lifetime

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This Opportunity Comes Once in a Lifetime

After a year of diligent work and follow-through, my Moscow HSCT treatment phase has finally come to an end.  Unlike most patients who receive their entire treatment in 5 weeks, my path was a little off the beaten one.

When I arrived in Moscow, I had 10 enhancing brain lesions. Those lesions were a blessing in disguise being that medical evidence shows the more lesion activity you have, the more optimal your HSCT result may be.  That was the upside to my lesion activity.  The downside was, based on the high number of enhancing lesions, Dr. Fedorenko thought it wise to prescribe an additional 4 doses of chemo over the next year (1 every 3 months) in order to guarantee capping off the monster that had plagued me for over 10 years and disabled me to the point that I needed to use a trekking pole to walk, due to foot drop, and the dexterity in my right hand/fingers was noticeably compromised.

Two weeks ago today, I had my FINAL dose of the Mitoxantrone (the “blue devil”), and decided that it was time to document and share my entire journey in a YouTube presentation.  It’s a condensed version of how it all began, how I got there, the treatment itself, and how it all played out in the end.  There are lots of previously unseen photos and I find that sometimes pictures portray a story better than words alone.  I also wanted to share a Podcast interview that I recently completed with Healthcare Elsewhere, a program that specializes in covering stories about medical tourism.  In that interview, I explain what HCST is, and how it works.  You can click on the pic below or the link above to access the interview.  One of my main goals with this blog is to bring hope to those who may think there isn’t any left for them.  Please feel free to share the link to the interview or my video with a friend or loved one who may be suffering from an autoimmune disease.  It may be the hope they’ve been looking for.

 

healthcare elsewhere for blog

 

Until my next blog post…peace and love from the Pennsylvania countryside!

Send the Call Out…Send the Call Out…

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Send the Call Out…Send the Call Out…

That’s exactly what’s going on here in the U.S. and abroad!  We are sending the call out to everyone who will listen about HSCT (Hematapoietic Stem Cell Transplant) for autoimmune diseases and the hope that it can bring to so many who think that they are out of options. Several Moscow veterans, including myself, and a woman from my area who will be going to Moscow in a few weeks, have had to opportunity to give a shout out to the public, via the media, singing the praises of HSCT.  We’re making as much noise as possible on television, radio, and, of course, social media.

vicki video

Vicki Wilson’s interview with Good Morning Arkansas

kristy 60 minutes

Kristy Cruise’s interview with 60 Minutes Australia.

 

 

 

 

 

 

wtaj interview

My WTAJ-TV-10 Interview with Diana Rees

Carol’s Radio Interview

 

 

 

 

 

 

In the meantime, I had my 3rd of 4 followup infusions of chemo (see post from April 27, 2013 for an explanation of the reason for my followup chemo)  in February and I’m happy to say that I tolerated it very well.  I didn’t even have my usual couple of “crash and burn” days.  I just kept chugging along.  I have one more to go in mid-May and then I’m home free.  My true recovery clock will not begin to tick until that day.

I continue to walk without a trekking pole and have completed my physical therapy about five months earlier than expected because I met or exceeded all of my goals.  As Dr. Fedorenko suggested, it did play a huge part in my physical recovery due to years of lack of use and/or misuse of my muscles.

I did have one bout of bronchitis a couple of months ago which I jumped on right away with antibiotics.  Surprisingly, I recovered from it much more quickly than I have pre-transplant.

Most of my days are filled with normal, everyday tasks without the dread that used to accompany them.  Who would have thought doing laundry could be so fun…not! ha ha   I was fortunate enough and physically able to make a 15-hour road trip to Atlanta last week. That is something I never would have been able to do a year ago.  Heck, I would have been lucky to be able to get in and out of the car or sit for that long a year go.  By the way, I did all the driving.  I was able to meet with Brandon Eurek and his family who have been some of my biggest fans since the moment I announced I was having HSCT (see pic below).

 

brandon and me

Keeping Calm with Brandon!

I also spend a portion of every day trying to spread the word about HSCT in one way or another.  As much as I would like to be banging on the doors of political figures to make this treatment more quickly available to the public at large, I know that could take years.  I want to concentrate on the people I can reach who need help NOW!  If I had $5 for every person who has said they wish they hadn’t waited to have it done, I could afford to pay someone to type this for me!  If you want to have this treatment and you think you could never afford it, you may be surprised what you can accomplish.  If you do have the funds and you’re simply waiting until you’re “bad enough” to have it done, I beg of you to reconsider and move forward as quickly as possible.  Time is not your friend.

As long as HSCT events occur and my post-transplant life evolves, I will continue to keep blogging.  I will, for sure, be posting about my very last dose of Mitoxantrone.  That will be a day of celebration!  It was just a year ago that I was packing my bags for Moscow.  I’m so excited for the next group of HSCTrs who will be filing into the halls of Pirogov during the month of April.  We are all so blessed by this opportunity.  I’m wishing the same for all of you.

Peace and love from the Pennsylvania countryside.

 

I’ll Put One Foot In Front of the Other…

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I’ll Put One Foot In Front of the Other…

After a day of rest at the hotel, today, was to be a day where I try out my sea legs to see how much or how little endurance I may have.  One month of isolation in a hospital, does not lend itself to muscle strengthening, and I knew that, but, WOW, I definitely underestimated the amount of atrophy that can take place in such a short amount of time.  Just the act of getting a normal, everyday, full-length shower and getting dressed almost completely wiped me out.  Normally, I’m able to push through the fatigue. but, when you couple that with the dizziness/edginess that comes with recovering from chemo and being on a steroid (that always makes me feel like death!) and I knew it was not going at what I consider to be a “productive” day.

Last night, my friend, Kristy Cruise, of Australia, arrived in preparation for her HSCT pre-testing which will begin on Monday.  She, mom and I had agreed  to meet for the hotel’s breakfast buffet, and I really was looking forward to it.  First obstacle?  There is no elevator to the 3rd floor restaurant.  Every other floor has access to an elevator, but not that one.  Mom had already been up the stair case several times and knew that it would be a bit of challenge for me, but I could do it.  Mom opted to get me safely up the stairs (see pic), literally, one step at a time and to the restaurant and she would meet with Kristy and return.

Stairs to the restaurant in the hotel.

Stairs to the restaurant in the hotel.

We had a lovely breakfast (see pics) and chat, and it was decided that even though I fully intended to go the flea market for a short stretch, that it wouldn’t be very wise to do so, just yet.

More restaurant.

More restaurant.

To restaurant.

To restaurant.

Restaurant entrance.

Restaurant entrance.

One of the many restaurants at Best Western Vega Ru

One of the many restaurants at Best Western Vega Ru

Speical Agent Koala Bear, reporting for breakfast.

Special Agent Koala Bear, reporting for breakfast.

Mom and Kristy proceeded over to Izmaylova Market for a very productive couple of hours of souvenir shopping, site-seeing and photo ops.  I will admit, I took one of the most peaceful naps that I’ve had the entire time I’ve been here.  Wise choice, Brooke.  Slow and easy.  Earlier, Kristy had graciously gifted me with one her Moving Mountains t-shirts and a few trinkets.  One of my fave “trinkets” was a container of Tim Tams from down under.  They are kind of a chocolately, toffee wafer type of cookie that are to die for.  But, last, but, not least, was a very thoughtful “Ninja” charm (see pic) that she picked up on her way through Japan this week.  It is to remind me of the brave “Ninja”, Amy Peterson, whom, had she not blogged her HSCT experience here, I wouldn’t be here right now and about to venture on a life free of the constraints of MS.

Pink "Ninja" charm.

Pink “Ninja” charm.

Below are a couple of pics of me and Kristy in our room.  Just a couple of members of the Sisterhood, hanging out.

Me, Kristy and one of her Moving Mountains t-shirts.

Me, Kristy and one of her Moving Mountains t-shirts.

Sisterhood!

Sisterhood!

So, my first whole day on the outside.  Was it everything I had hoped?  It was spent with friends and family.  There were laughs, and tons of food and naps. and, as it should be, the healing of me has just begun.  For this “Impatient Penny”, it’s not an easy task to hold back, but days like these, no matter how limited are precious to me because my life of fear is waning and a life of living awaits.  Well worth the wait, if I do say so.Peace, love and naps, from Moscow.  🙂