Tag Archives: ms

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.  🙂

Ain’t No Lie, Baby, Bye, Bye, Bye…

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Ain’t No Lie, Baby, Bye, Bye, Bye…

There are many milestones that an HSCT patient will reach during their stay in Moscow, or any other facility for that matter.  But, one of the more prominent in my mind, and maybe it’s because I’m a woman, is the loss of hair due to chemo.  That’s right, there’s no avoiding it.  Nobody gets a check out free card that will save themselves from certain  hair loss due to the four days of high-dose chemo that’s administered prior to transplantation.  If you don’t receive chemo, you don’t kill the T-cells where the MS resides.  No chemo, no curative effect.  If you haven’t figured it out by now, the chemo is the real hero in this entire process.  Without it, the transplantation would be moot.

So,  you have your four, kick-ass days of chemo, you rest a day (there has to be a 24-hour period without it before transplantation), you have your transplant, then you wait, while in isolation, for the “cumulative effects” of the chemo that Dr. Fedorenko warned you about.    The ones that I didn’t suffer from at all, until after I engrafted and came out of isolation two days ago.  The ones that keep me from being able to keep my eyes open, yet, when I close them, I can only sleep peacefully for two-ish hours at a time.  Not to  mention the dizziness, overall weakness and worsening of MS symptoms…DON’T WORRY!!  IT’S ALL TEMPORARY.  3-6 months TEMPORARY!  That sounds like an awfully long temporary for this impatient puppy.  But, I’ve waited 13 years to rid myself of this monster, I suppose I’d look pretty lame if I couldn’t suck it up for another few months or so.  You can bring me my straw and that tall glass of “suck it up” and I’ll get right on it.

LET’S GET BACK TO THE HAIR!!!

5 days post chemo, I hadn’t lost one shred of hair.  Three days ago, I went into the bathroom, thought I’d give a little tug to some strands and within 20 minutes and with no resistance, all of the hair on my head, except for a baby fine layer of blonde had filled the entire sink.  I looked at it in horror…and amusement.  You see, MS has taken a lot from me over the last 13 years.  Too many things to count, and if I did, it could send me reeling over the edge.  My  hair, was the last thing it will take from me.  HERE, MS!  COME AND GET IT YIPPY KI-AY, MOFO!   I warned you I swear like a trucker.  But, this little slip of the tongue feels DAMN GOOD.  You killed my hair, and I killed you.  Sounds fair enough to me!

So, what’s a girl to do?  I end up looking like death warmed over and the doc suggests that I wait a couple of  days until my platelets come up to shave my head.   He said it will fall out, anyway…No it didn’t.  Yesterday, he gave me permission to shave it, and last evening, one of the sweet nurses came in and did it for me.  Although I was initially psyched to have it done, I was getting a little worried that I might start tearing up or something.  HELL, NO!   I took one look, pumped my fists in the air and proclaimed “I’m free!  I’m free!”  It was a good moment (pics below).

Ain't no lie. Baby, bye, bye, bye!

Ain’t no lie. Baby, bye, bye, bye!

A shiny side-shot!

A shiny side-shot!

I couldn't resist this bald-headed Charlie Brown cartoon.  Crack me up!

I couldn’t resist this bald-headed Charlie Brown cartoon. Crack me up!

MY NUMBERS ARE IN!

Leukocytes – 31  Platelets – 73  Hemoglobin – 112

SIDENOTETODAY IS MY HUSBAND’S 45TH BIRTHDAY!  This year, I’m giving him his wife back…MS free.  Not exactly sure how I’m going to top that next year.  🙂  Happy Memorial Day to all of my U.S. peeps!!

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!!

Let’s Party Like it’s My Birthday…

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Let’s Party Like it’s My Birthday…

Drink Bacardi, like it’s my birthday…

On the day that a patient has their stem cell transplantation (the day you get your stem cells back), it is coined your new birthday…the birth of your new immune system, which is free of MS. As much as I don’t think of it as a physical birth, I have no problem playing along if there’s a celebration involved. Feel free to have a cocktail in my honor. Happy birthday to me, baby!

It was a perfect day today, here in Moscow. The sun was shining and the sky was so blue. My sterile “box” just seemed to have a warm glow that lended itself to creating the perfect vibe for my mindset. It’s as if it knew what was about to transpire.

My routine has become me lying in bed from 5-6:00 a.m. I get in the shower at 6:00 a.m and am ready for whichever nurse may come flying in the door with an IV drip or 5, or injections, temperature, pills. Today, was a little different. Dr. Fedorenko promised that there would be no early morning anything, so, I decided to sleep until 6:00 a.m. Lie in bed until 8:00 a.m., have breakfast and then get my shower as late as possible. I ended up in the shower around 9:00 a.m. and when I came out, the furniture arrangement had changed. The bed was in the middle of the room, my side table moved to the far wall and a vitals monitor placed on top of it. The floors were mopped and every possible touchable surface was disinfected.

Dr. Fedorenko arrived to let me know that at about 1:00 p.m., they would start moving in all of the medical supplies required for the transplant and that my stem cells would arrive, via courier, shortly thereafter. They did arrive, promptly. I was asked to remove my yoga pants and lie down. I was able to wear my tanktop and my own underwear. They hooked three electrodes to me, placed the automatic blood pressure cuff and began my run of IV Solumedrol which they utilize during the transplant to avert any allergic reaction to the stem cell preservative. Next up, Dr. Nikita arrives to assist. The nurse, Gillana takes center stage, and a bevy of other nurses are fluttering in the hall as my mom tries to take pics from a distance. A stem cell transplant is a very big deal here no matter how many they do, and the staff all seem to marvel as it take place, as well as stand ready to help if needed.

Dr. Fedorenko proceeds to tell me that we are about to start the transplant and to warn me that I may feel a sensation of hot fire in my throat, extreme pressure in my chest, difficulty breathing and painful back and muscle pain. He said that I may also become very dizzy. Thankfully, because I’m in constant contact with other HSCTrs, I was already well aware of those potential setbacks. The two most ratcheting experiences that you have while you’re here, are your catheter placement, which is a small surgery, and THIS, the transplantation. I had been so lucky so far, that I knew the odds were no longer in my favor, and I was ready to pay the Piper for my ticket to freedom.

An oxygen mask was placed on my mouth, which was refreshing. Dr. Fedorenko proceeded to hold my hand and said “We are beginning the transplant…NOW”. Of course, I braced a little, and nothing, I knew exactly where I wanted my mind to be and was completely focused. Dr. F. commences his arsenal of questions “Do you feel any pain?”, “Are you having difficulty breathing?”, “Do you have a hot feeling in your throat?” All the while, I am completely in the zone, breathing very deeply and calmly. I finally had to say “No more talking.” He said “No more talking…okee (with Russian accent)”. From that point on, I used a nod of the head to indicate yes or no. While this entire conversation is going on, I’m still thinking that they haven’t done it yet, because I’m not feeling anything. Next, he says “We are done with the first bag.”. Because I had two days of stem cell collection, there are two bags. If you remember, the first bag only had 800,000 stem cells in it and the second had 1.2 million, so, I knew with the second bag, this was when I would be sphewing out a few “Sweet Jesuses”. Well, I think Sweet Jesus was there, but he most definitely was not being uttered across my lips. Again, no pain or sensations. I must say though, from the first bag on, you can taste the preservative used in the stem cells and it tastes like creamed corn (who doesn’t love creamed corn?). Crescendo….Dr. F. states “We are finished.” WHAAAATTTT??!! I jokingly say “Where’s the scary part?!” They all chuckled. There were some very, very happy, “I came to do my job and I did it well”, staff in that room. They were all so proud.

After the transplantation, the IV Solumedrol continued to run, as well as protective fluids. After they have completed, they bring a bed pan to a chair beside the bed (bottle for men) and ask you to urinate into it in order for the doctor to inspect it for color and consistency. Well, I knew as soon as they put it on the chair, that my legs were not long enough to reach the floor and straddle the chair at the same time, let alone keep my balance while doing so. I requested that they put it onto the bathroom toilet so that I could grasp the bathroom sink to support myself. They obliged. Note: color/consistency…good! Although I was a little wobbly after the transplant, a lot of that had to do with the Solumedrol, which continues to fuel my hunger. Lunch had been served during the transplant and was being held for me to ravage. By 1/2 hour after the transplant, I was up and ready to go. Not anywhere in particular, just the restroom to purge all of the IV fluids.

So, there you have it. Miracles never cease in this stately medical facility. Blessings of comfort continue to flourish for me and the hope of an MS-free life for me grow closer. Right now, my symptoms are ramped up due to the swelling from the Solumedrol, but, that will subside. Starting tomorrow, they will begin to closely monitor my bloodwork. We will wait for it to bottom out, and then we will wait for them to rise. That’s how the flow goes. I will have more details on that process as the days progress.

I would like to leave you with transplant pics from today, as well as pics from a little something that I came up with last night in my spare time. You can’t lock me up in a golden tower and think I’m not going to be thinking stuff up!!! I started a World-Wide Cheer Wave (just like at a football game), challenging friends and family around the world to do the “Wave” and post it on FB for everyone to see. It was a huge success and supporters, young and old, two-legged and four-legged came out to get me through today and my stem cells to their homes. GREAT JOB, EVERYBODY! I really do have the best cheer section…EVER!

Please, feel free to go have that Bacardi and enjoy the pics (all are clickable to make large)! Cuz’ it’s my birthday!!

THE TRANSPLANT!

Pre-transplate mood tunes.

Pre-transplant mood tunes.

Waiting for the stem cells and prep.

Waiting for the stem cells and prep.

Dr. Fedorenko checking on the stem cell delivery.

Dr. Fedorenko checking on the stem cell delivery.

Prep cart.

Prep cart. Is that a lobster pot I see? Hmmm.

The stem cells arrive!!

The stem cells arrive!!

Vitals are in check!

Vitals are in check!

Transplant accessories?

Transplant accessories?

Stem cells are warmed in a bucket.

Stem cells are warmed in a bucket.

Tranplantation in action.

Transplantation in action.

Me throwing my ceremonial bucket of left over stem cells.  It's a tradition!

Me throwing my ceremonial bucket of left over dry ice. It’s a tradition!

THE CHEER WAVE HEARD AROUND THE WORLD…

Where the Wave began. In my room in Moscow.

Where the Wave began. In my room in Moscow.

Vicki Wilson, St. Augustine, FL

Vicki Wilson, St. Augustine, FL

Sandy Wolford, State College, PA

Sandy Wolford, State College, PA

William & Harry, wherever they want to be!

William & Harry, wherever they want to be!

Patty Chwatek, keeping the wave going at Planet Fitness

Patty Chwatek, keeping the wave going at Planet Fitness

My husband's NESL blacktop crew!!!

My husband’s NESL blacktop crew!!!

Margaret O'sullivan from New Jersey.

Margaret O’Sullivan from New Jersey.

Lesa Lashinsky from Hollidaysburg, PA

Lesa Lashinsky from Hollidaysburg, PA

Lauren Abbot & Friend from Minnesota

Lauren Abbot & Friend from Minnesota

Kristy Cruise from Gold Coast, Australia.

Kristy Cruise from Gold Coast, Australia.

Mick, helping me get some satisfaction.

Karen Frederick doing the jammy wave in Woodbury, Pa

Karen Frederick doing the jammy wave in Woodbury, Pa

The Peters boys doing a double wave from Erie, PA.

The Peters boys doing a double wave from Erie, PA.

Clair Peters doing her very first wave.  She's already got it down!!

Clair Peters doing her very first wave. She’s already got it down!!

Autumn's awesome yoga Wave...

Autumn’s awesome yoga Wave…

Alison Elder waving it up in Tyrone, PA.

Alison Elder-Bonsell waving it up in Tyrone, PA.

Adam doin' the Wickel Wave!!

Adam doin’ the Wickel Wave!!

My 611 co-workers waving on my stem cells.  Love them!!

My 611 co-workers waving on my stem cells. Love them!!

Tuck Russel doing the canine wave.

Tuck Russell doing the canine wave.

This little one is helping me reach for the stars.

This little one is helping me reach for the stars.

The Altoona Chorus Wave!!

The Altoona Chorus of Sweet Adelines International Wave!!

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

Praise the Lord, and Pass the Ammunition…

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Praise the Lord, and Pass the Ammunition…

Yep!  I said ammunition, and firearms, and baked goods, and baskets, and adirondack chairs, and hope chests, and paintings, and antiques, and t-shirts.  What am I talking about?!  I’m talking about fundraising!  We’ll get back to the guns and ammo in just a bit.

For those of you following along, because you are in the process of making the decision to have HSCT for your MS, one of the first items that you need to check off your list is “How the heck am I going to pay for this?”.   Well, let me give you some advice.  First you need to ask yourself  “If one of my friends/family members were in need of assistance, either monetarily, emotionally or physically, to the extent that it could greatly affect their future health, and you were in a position to help them, in any capacity, would you?”.  Hopefully, the answer is “yes” because half of the battle for the person who is in need, is getting past the fact that you may need to ask for help.   Once you get over that hump and realize that it is just as rewarding for those who are helping you as it is humbling for you to accept it, you can effectively move forward with a solid plan to come up with the funds required to pay for your transplant.  In my experience (who am I kidding…it’s only been 3 months), you must announce your intentions.  Start small with family, close friends, and, in my case, my hairdresser.  ha ha  Simultaneously, create a blog that tells your entire MS story, including what your life used to be and what it has become thanks to MS.  Also, explain, in as much detail as possible, but without losing your reader with lengthy medical terms, exactly what the transplant is and what results you could see after the treatment.  Some people are going to support you just because they care about you and they don’t need to know all of the details.  Others will support you because they believe in your cause or a friend/relative of theirs has MS and they want to tell them about what you’re doing.  Others may be interested because this transplant is not just for MS, but for people with lupus, scleroderma and other autoimmune diseases.  Some will want to know everything.  Give it to them.  Don’t be shy.  Short of your bank account numbers and yearly income, let them know the entire story through your blog.  It will save you from telling the story over and over again and will help the media (newspapers, television, etc.) get a jump on what you’re all about before they interview you.  And, don’t forget, you will be helping others who may be in a similar position who had no idea that this treatment was available (HUGE!).

So, you’ve got your blog, now.  Do you have a Facebook and Twitter account?  If you don’t, do!  When you make a post on your blog, your blog can be set to simultaneously post to your Facebook and Twitter (3 birds, 1 stone), which enables you to reach different audiences based on age, geography, subject matter, and so on.  Make certain that you update your thermometer as funds come in.  Some followers will check into your blog just to see how your fundraising is coming along.  At times, I have slacked on that task, as the funds come in so briskly sometimes, that I can’t keep up.  I wish the same “good” problem for all of you.

Now, back to the guns and ammo…A benefit auction/dinner was recently held on my behalf, that included dinner, a silent auction and a live auction (see pics below).  Some people will donate money to you, and some people will donate things that they are able to handcraft or create for you that can be sold for generous sums of cash.  Position yourself for success by contacting the people, who know people, who know people.  Word of mouth is priceless.  You need people, and not just for money, but for support now and while you are going through your treatment.  Even if you’re used to doing everything on your own with no assistance (me), it’s time to suck it up, because everybody needs somebody, sometime, so the song goes.  So, the benefit they held for me made a WHOPPING $39,500!!    The venue held 200 people, the majority of the food was donated as well as all of those delightful, delectable, auction items.  The guns brought in the biggest haul at almost $5,000 for five (5) guns.  And, one infamous gob cake (gob means whoopie pie for those of you in other parts of the U.S./World) sold for $975.  One room, one night, 200 people, $39,500.  It can be done!  For me, that all but pays for the treatment itself, and, in addition to that, I’ve received additional donations from cornhole/Baggo tournaments (Google it), partnering with businesses, through my blog and family/friends, that will almost pay for my remaining expenses (hotel, airfare, food/necessities for my mom during our stay).  I live in a rural community that loves their guns and gob cakes.  Figure out what the niche is in your community, and capitalize on it.

I know that all of you have unique situations in your life that may exclude you from being able to raise funds in a short amount of time, but, it can be done.  My efforts are just the tip of the iceberg, and I have been blessed to live in a community of caring, resourceful individuals who would give you the shirt off of their backs, as well as  lifelong friends from all over the country, who jumped in feet first.  You have nothing to lose, and only to gain by ridding yourself of MS.  Don’t wait!!!

My best, warm wishes and gratitude to those of you following, and it’s my hope that “when it’s my turn to march up to old glory, I’m gonna have one hell of a story” (sung as only the Dixie Chicks can).  Uh huh.  Yes I am.  🙂

Painting on tap and guns on standby at my benefit auction.

Painting on tap and guns on standby at my benefit auction.

My daughter and mother wearing my Stay Calm and Halt MS t-shirts.  It was a running theme.

My daughter and mother wearing my Keep Calm and Halt MS t-shirts.  BTW…I’ve made about $1,000 selling those shirts as well as spreading the word.

It's Sissy, Me and Tiff (my trekking pole) hanging out at the benefit!

It’s Sissy, Me and Tiff (my trekking pole) hanging out at the benefit!

This is what happens when the community raises $39,500 for you in one night…you shed a few tears!