Tag Archives: Moscow

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.

 

Sign, Sealed, Delivered…

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Sign, Sealed, Delivered…

As much as you all may have thought that this trip was supposed to have been all about me, saving myself from my MS, what you may not have known, is that it’s always been about a whole lot more to me.  I knew that living and blogging this experience in real-time may be the one and only chance for me to directly touch the lives of others who are having or considering having HSCT for HALT their MS as well.  It’s a mission that has kept me focused during my treatment and has served as a soulful reminder of this rare opportunity that I have.  Lucky for me, today, I had an up close and personal opportunity to assist a friend and fellow HSCTr, Kristy Cruise’s, cohesive entry into Pirogov Hospital for her pre-testing.   That first day there is full of so many unknowns, and being able to be help to make that as comfortable for her as possible was truly a labor of love.  I’ve even already had the opportunity to identify some of the food she’s been served .  She sent me the distress picture early after lunch with the “What do you think this is?” tagline.  Of course, I let her know that it was a chicken croquette and they were quite tasty.  ha ha    I have included a couple of pics of us right before we left the hotel for hospital.

About to head to the hospital.

About to head to the hospital.

Delivering Special Agent Koala Bear to the hospital for pre-testing.

Delivering Special Agent Koala Bear to the hospital for pre-testing.

With Kristy successfully placed, and her already being ushered off for testing, Dr. Fedorenko had requested a 3-day post-discharge exam and consult.  I passed  with flying colors and he proceeded to continue to warn me that I would be suffering from the side effects of chemo for at least 3-6 months.  So far, my main side effects from that have been dizziness and fatigue quelled only by periodic naps.  He reminded me that I only had to wear a mask in a crowded situation, such as the plane ride home or an enclosed space with  groups of people.  I was a little surprised when he said that I would not be able to go swimming until the last week of June, due to potential exposure to bacteria in pool water.  That was just fine with me.  I usually don’t get in until the first week of July, anyway.  One very pleasant tidbit of information was that he said there was no reason why I couldn’t drink wine.  Really?  I mean, REALLY?!!  I do love the occasional glass of very dry red, and, as summer is upon us, the thought of a crispy Reisling on the patio in the evening makes me shiver with excitement.   For some reason, I had just assumed that it might be at least 6 months until I was able to partake.  Who knew?!  He also said that I can begin driving, as soon as I feel comfortable doing so…perfect!

Dr. Fedorenko and I said our goodbyes and I headed back to hotel to meet with mom.  Our goal for the day was to try to get me to the mall across from the hotel.   Whether it took 15 minutes or an hour, I was determined to get there.  We opted to wait until later in the afternoon for the temps to cool down a bit and we headed out across the plaza, down two sets of long stairs, through a parking lot, and just as we were about to cross the street to the mall, I realized that #1, I was already exhausted from getting up early, #2, my feet were sore from yesterday’s trip to the Market and, #3, that the 2 or so hours that I had intended on spending in that mall were more likely to be an unproductive 1/2 hour.  I was close enough to reach out and touch it (see pic), but, I know when to cut my losses, and tomorrow is another free day for us.

So close...yet so far.  Not a happy camper.

So close…yet so far. Not a happy camper.

We opted to head back to this cozy little restaurant we’d wanted to try out that is right outside the hotel, and we would give the mall another try bright and early tomorrow morning when this Energizer Bunny’s batteries were fully charged.   Below are a couple of pics from the restaurant called Sole Mio.  The food was fantastic, the prices were reasonable and the service was impeccable.

This lovely little restaurant, Sole Mio, also has fab takeout pizza. Pectopah, means "restaurant".

This lovely little restaurant, Sole Mio, also has fab takeout pizza.  Pectopah, means “restaurant”.

Cheese balls with ham and melted cheese inside.  Delish.  Love the presentation!

Cheese balls with ham and melted cheese inside. Delish. Love the presentation!

The restaurant, Sole Mio!

The restaurant, Sole Mio!

Mom and I enjoying a little Coke before dinner.

Mom and I enjoying a little Coke before dinner.

So, yet another productive day in Moscow as I continue to build strength while trying to incorporate an appropriate amount of rest.  It’s a challenge for me, but well worth the sacrifice.  Tune in tomorrow, at a time unknown to see what kind of trouble mom and I might be getting into.  As the week progresses, I will be addressing what I can expect upon my return to the states in the way of recovery, reversal, and all around expectations of myself and my plans for rehabilitation.  This, my friends, is just the first leg of the race.  And many miles to go…

Peace, love and cheese balls from Moscow.

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.  🙂

Can You Kneel before The King and Say “I’m Clean”?

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Can You Kneel before The King and Say “I’m Clean”?

In case you missed it, yesterday was the big move to solid isolation.  I knew it had to happen.  I knew it would be soon, and I knew exactly what to expect.  Or, did I?  Of course, I completely understood the idea of my door always being shut, and that brushing of teeth was prohibited, etc.  Easy stuff.  Here came the difficult stuff, or was it?  Enter the nurse who speaks a little English.  Little enough and broken enough that I had no idea what she was saying today when she was describing to me all of the apothecary-looking bottles filled with clear and golden-colored liquids that I was to use to wash my body.  Normally, we have a relatively good understanding of the point that we’re trying to get across to each other.  Not today!  Why was I not understanding that you use the same type of solution to wash your face and neck as you do your private parts?  Why was I not understanding that it was a two-step process?  Why didn’t I, nor don’t I, know for certain if  you’re supposed to rinse off with water first, then use the cleansers, or use the cleansers and then rinse off?  Why?  Why?  Why?   I was able to glean that she wanted me to wash my face and neck with the solution.  After that, it all went down hill.  First, I thought she told me that I didn’t have to do it until the evening, so I sat there in the bathroom, out of her way, so she could clean the rest of my room.  The next thing you know, she comes in pointing to my back and saying…I have no idea.  I’m like “Do you want me to wash my back?”.  She points to herself and I deduce that she is going to clean my back.  Ah-ha.  I do remember Dr. Fedorenko telling me that she would show me how to do that the first time.  I take the shirt off.  She loads up a gauze pad with some type of alcohol and says “Vodka!”, “Da, Vodka” and holds the gauze to my nose, giggling.  Sure enough, it smelled exactly like Vodka.  I made a motion as if I was drinking out of the bottle and we laughed.   She finishes my back cleansing and walked away.  I grab a towel to cover up, and I wait.  Now, what am I supposed to do?  I sit back down on the toilet seat while she continues cleaning.  She comes back and says…I have no idea, and points to my legs.  I suppose I was psychically supposed to know that I was supposed to be cleaning those next…and my private parts?  I close the door and get to my business, (young ones and macho men look away)  and YIIIIIKES!!  I start yelling “No!”, “No!”, “No!”  Here’s the deal.  I’ll be 49 in September.  I’ve never had a hot flash in my life and my period has been on time every month for 37 years.  You would think, after the crazy week of physical manipulation and stress that I’ve been through, that I might have been spared that perfectly-timed feminine monthly reminder.  ARE YOU KIDDING ME!!??  Ok, Brooke, reel it in.  You’ve had nothing less than a stellar track record during this entire treatment.  Get your head on straight and be glad that you’re not experiencing menopause mania, yet.  I knew that I had to immediately report my discovery to Dr. Fedorenko, because he specifically asked me to tell him if it happened during the neutropenic stage of the treatment.  Ding, ding, ding!  We have a winner.  So, what are the ramifications of this happening during this phase?  I wanted to know if I would be forced to used pads, which I haven’t used since I was 12, or if it was okay to use tampons.  Or, would there be a risk of toxic shock syndrome.  Yes, it’s been about 30 years since the first big toxic shock scare and it still haunts me.  Luckily, he said that “yes”, I could use tampons, but, I am to keep a very close watch on any abnormal bleeding or clotting.  Fair enough.  Breakdown over.

The nurse sets up what is now my sterile dish washing area, wherein, dishes that I use never leave the room, and before they are washed and put away, they are placed for 15 minutes in a holding tank of  special water (I’m going to imagine it’s that far out “diamond water”).  ha ha  They are then removed and dried.  Even though the staff would wash your dishes for you, it has become a tradition for us ladies to do it for them.  It’s like a game where we try to get them washed and dried before they come back to do it.  Both Tammy and I brought our own little bottles of dishwashing liquid with us.  It’s fun, and it brings a sense of “down home” normalcy to a not so normal situation.  These nurses do so much for us.  It’s nice to see the look of gratitude when they see we’ve returned the favor.

I’m in the home stretch with this body cleansing debacle, and I decide to wash my hair in the sink as the evening winds down.  Brilliant.  Why didn’t I think of that, before?  Now that I’m feeling as fresh as a Vodka Gimlet, I’m ready to settle down in front of my laptop, listen to some tunes and chill.  Flying through the outer corridor door is the nurse/bartender motioning for me to take my temperature.  I do, and hold it up to the glass so she can record it.  She then starts pointing to my bedside table.  Once again,  a look of bewilderment on my part.  There’s my pillbox, some alcohol spray and a blood pressure monitor on the table.  She motions to the crook of her arm and through the glass I say do you want to take my blood pressure?  She points to me.  I say “You want me to do it?”  She says “Da (yes)”.  I’m thinking, okay, I can do this.  I wrap the cuff around my arm.  I think it looks perfect and she keeps shaking head no.  I’m all ready to push the automatic button and I see her start gowning up to come in.  What the hell did I do now?  I’m no nurse!  She turns the cuff.  Apparently I didn’t have it turned to the correct spot where you catch the pulse.  She then asks me if I’m a doctor.  WHAT!??  I laughed.  She said “I am Medical Assistant, are you?”  I shook my head no, looked over at my computer and mimed typing on the computer.  THEN, she got it and said “Ohhhhh”.  We both laughed…hard.

So I’ll end this evening by asking all of you from this point forward to look at me with the respect of a “Medical Assistant” (nurse in Russia).  I have serious cramps, and a blood pressure cuff, and I’m not afraid to use it!

NEW ADDITION…I’m going to start posting a pic of myself each day (if I can get a decent “selfie”) and call it “Wisp Watch”.  As of this morning, after I was done washing my hair, I did begin to see a few wisps fall into the sink.  This is a new development.  My hair never falls out.  This should get interesting…

I leave you with a few pics of from new cleanliness regimen and a brand new Wave pic hot off the presses.

My body cleansers.

My body cleansers. Notice the pink duct tape labels?

Sterile gauze pads that you soak and wash with.

Sterile gauze pads that you soak and wash with.

The anti-microbial light that is now always on in the bathroom.

Mouth gargle, that is used after each meal.

Mouth gargle, that is used after each meal and in lieu of brushing teeth.

This is the dishwashing station, where the dishes must be soaked in a treated water for 15 minutes.  My "diamond water". :)

This is the dishwashing station, where the dishes must be soaked in a treated water for 15 minutes. My “diamond water”. 🙂

Me in my fresh, floral hospital gown.  Fabulous!

Me in my fresh, floral hospital gown. Fabulous!  This is where I will begin my “Wisp Watch” pics of the day.

My nemesis.  The Cuff!

My nemesis. The Cuff!

Here's my NBC crew waving my stem cells along to their homes.  Keep it up!!

Here’s my NBC crew waving my stem cells along to their homes. Keep it up!!

NUMBERS JUST IN!!!  MY LEUKOCYTE LEVEL HAS APPROPRIATELY DROPPED TO 0.2!!

Would You Still Call Me Superman…

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Would You Still Call Me Superman…

Yesterday (Tuesday) was the first of what turned out to be two days of apheresis (stem cell collection) for me.  The minimum number of stems cells required for transplantation is 1.5 million.  50% of patients are able to extract the minimum number in one day, the other 50% in two days.

When a patient begins their stem cell transplantation process in Moscow, Russia, there are certain landmarks in the treatment that are significant.  First, the week of pre-testing which includes or excludes you from receiving treatment and helps the doctor to assess and inform you of what type of result you may see from your treatment based on your history, MRIs and current level of disability.  Second, is the commencement of stimulation injections, two per evening, at 11:00 p.m. and 3:00 a.m., for four days.  Third, is the apheresis.  During apheresis, you are hooked up to an apheresis machine that looks much like a dialysis machine (see pics below), wherein your body’s total blood volume is circulated through and separated three times in order to collect your stem cells.  Your blood is returned to your body at the same rate that it is extracted and only a small amount of peripheral blood is lost in the process.  The apheresis takes approximately 4.5-5 hours and you must lie completely still during that period of time.  You may not leave the bed to use the restroom.  For those of you who have MS, a very common symptom of MS is some degree of difficulty with bladder and/or bowel control.  For this reason, they recommend that you wear a diaper (Depends) during the procedure, just in case you can’t make it through until the end (for the record, I was a big girl, no issues).  Yes, that’s right.  I wore the Depends!  Throw the pride away!  Just promise me that the next time you run into me at the grocery store that you don’t think of me as the woman who had to wear a diaper while she was in Russia, but the woman who would stop at nothing to rid herself of MS.  See my apheresis survival kit pics below.

Apheresis Survival Kit

My Leevi Steele t-shirt and a Depends!

My Leevi Steele t-shirt and a Depends!

A head pillow is a MUST!  I got this one at Target for $6.  It is inflatable, so, it fits in your luggage.

A head pillow is a MUST! I got this one at Target for $6. It is inflatable, so, it doesn’t take up a lot of space in your luggage.

I knew the first day was going to be a tough one and had to look no further than the story of young  boy from the community in which I live who battled with cancer for two years, who brought together an entire community of friends and strangers and who put up one of the toughest fights of anyone of any age that I’ve ever witnessed.  His parents, out of necessity, also, had to travel outside of the U.S. to receive treatment.  Leevi Steele lost his battle just a day short of his 6th birthday in March of this year.  He’s gone from this earth, but his legacy lives on, and I was honored to wear a t-shirt in his memory for that first, very scary day for me.  Who knows, maybe it was because I was wearing it that I experienced NONE of the typical symptoms of apheresis.  For example, numbing of the lips, wrenching of the muscles, nauseousness, pain, etc.  The nurse was able to find a good vein on the first try and the rest of the procedure was flawless.

The first day’s results came in and my collection number was 800,000.  This meant that I would have to endure another day of collection, utilizing the opposite arm and being immobile for another five hours…bring on the second pair of Depends.  Today, by the grace of God, a ton of worldly prayers, and me visualizing billions of stem cells being created, we collected an additional 1.3 million stem cells, which brings my total to 2.1 million, which is well over the 1.5 million required.  These stem cells were shipped off via courier and cryogenically frozen until they will be returned to my body next week to restart a new immune system that is free of MS.

1st day apherisis.

1st day of apheresis.

Me & Dr. Fedorenko.  Yes, he always has that twinkle in his eyes.

Me & Dr. Fedorenko. Yes, he always has that twinkle in his eyes.

The apheresis machine with my stem cells hanging on the side of it.

The apheresis machine with my stem cells hanging on the side of it.

As if these last two days weren’t enough, it was decided that immediately after today’s collection, that I would have my Hickman line installed (see pics below).  A Hickman is much like a PICC line that runs in through either your jugular vein or subclavian vein and rests beside your heart.  This device will be my best friend for the next few weeks, as all medications that I receive, including chemo, will be able to be administered through this line without the need for multiple injections.  So, about this Hickman line installation…it was not exactly what I expected.  First of all, I had a subclavian one installed, instead of a jugular line (Google it for details).  The actual insertion was not painful at all.  The injection of anesthesia at the insertion site was a bit ouchy and there were some pinching sensations in the back of my neck (don’t know why).  I could hear him running the line into my body (kind of like a “ziiiip” sound).  I was just coming off the 5-hour apheresis, so I was already shaking like a leaf, and you have to lie flat on your back on a very narrow table.  You are asked to turn your head to the left, put both of you arms to the side.  You are not permitted to breath deeply, cough, or move your head to the right.  It was at this point that the tears started rolling.  It was the first time that I had cried in front of the doctor and it wasn’t sobbing, it was just the realization of everything that my body had endured over the last week and was going to continue to endure in that moment.  It was at that moment that the bright-eyed Dr. Fedorenko, held my hand, made jokes, and had me smiling in no time.  After the placement was complete, Dr. F. escorted me to the xray department, where they confirmed that the line was appropriately positioned.  I have been warned that I may feel discomfort/awkwardness for the next couple of days, but, that it will subside.  I had the Hickman installed about 3 hours ago, and so far, I feel completely normal.  I think my Leevi mojo continues.

Hickman line.

Hickman line.

My Hickman line. I did it!!  Whew!!

My Hickman line. I did it!! Whew!!

That’s where we’re at.  Tomorrow, I begin a four-day run of chemo, followed by one day of rest, and then on Tuesday, May 14th, I will receive my stem cells back during the actual transplantation (the next big landmark).

I realize that this posting seems a bit more somber than most, but, it’s incredibly important for me to relay information that is as accurate as possible for those who may be considering this treatment.   Sometimes, it’s not all rainbows and marshmallows.  I am feeling incredibly whooped at the moment.  My skin hurts from the Solumedrol.  My feet are a bit swollen from the apheresis (common), and I’m a bit wobbly.  But, I am uplifted as well.  Thank you all for following along, and, I’ll keep you by my side with my superhuman might…

Kryptonite