Category Archives: Uncategorized

Stop Right There!!! Before We Go any Further…

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My, oh, my, how things can turn on a dime.  Yesterday, things are humming along, with all of my testing done but two which were to be completed today.  I was on the fast track to approval and commencement of stimulation injections, which is the first phase of the stem cell transplant process.  I felt like a million bucks and was over the moon about hanging out with Team USA (Jeff & Tammy).  I come back to my room, had a fab talk with Dr. Fedorenko, he leaves, and it all went down hill from there…

First, came the scratchy throat, then, the stuffy nose, then, the sore throat and ear, then, difficulty swallowing, then, the cough.  I managed to sleep from 9:30 p.m. to 12:30 a.m..  When I woke up, I was in a hurt locker and was soooo thirsty.  I go out to the water cooler by the nurse’s station only to find that it was empty and there wasn’t any available on other floors.  You can’t drink the water out of the tap until you reside on the isolation floor where all of the taps are on a filtration system.  I had a headache and felt like my scalp was inflamed.  No problem!  I’ll just take some Tylenol.  With what?!!  My spit?!!  Yes, I could have tried to swallow them without any liquid, but, it would be just my luck that I would choke on them and they wouldn’t find me until the next morning. I can see the headlines, now…”Pennsylvania Native Travels to Russia for Stem Cell Transplant, Only to Die from Tylenol Overdose!!”   So, I thought I would just suck it up until the morning, which I did.  Well, by daybreak, not only did I have all of the aforementioned symptoms, but, at that point, the lymph nodes in my neck were sore, my jaw bones were sore and my teeth.  Yes, my teeth.  Did anybody see a bus with a big dent in the front of it that strangely resembles the shape of my form??!!  That was me…roadkill!!  It’s important to note that the last time that I was sick (with the exact same thing), was a little over three years ago, and, then, maybe four years before that.  I RARELY get sick.  I messaged Tammy who is upstairs in the isolation rooms and who is more in tune with Dr. Fedorenko’s schedule.  I asked her if she thought I should send him an e-mail to let him know that I’m sick and to see if he could check in with me sooner rather than later (not that it’s ever later…the  man always seems to show up at the right time).  It just so happens that he stopped off to see Tammy when he got to the hospital and she put up the smoke signal for her ailing American comrade and the next thing you know the good doc is standing in my doorway with a mask on and his stethoscope in hand to listen to my breathing (it was normal).  It was obvious from the hoarse sound of my voice, stuffy nose and visible weakness that something was up.  Good news?!!  I did not have a fever.  Bad news?  He had to cancel my “breathing” tests for today, as they would not be accurate.  He said that it was something bacterial and proceeded to give me a box of pills to take immediately, tonight, and tomorrow morning.  He said that I would have to take them for the next 2-4 days.  Of course, in the back of my mind, I’m terrified that this would lead to me being disqualified from treatment.  I just kept saying “I’m so sorry…I’m so sorry”.  He’s a man on a mission, and, like me, he likes to stick to a schedule.  He was very understanding and said that none of us can predict our health, and not to worry about it.  He continued the conversation by saying that “When you get up to Jeff’s room…” (I will be staying in the same room that he did).  When he said that, it made me think that short of the two tests that I have left to take, and kicking this nasty little medical roadblock, that is was very promising that I would get the green light.  He did not come right out and say that, but technically, he’s really not supposed to.  A girl’s allowed to dream, right?!

Mom visited today, armed with paper towels, napkins, Kleenex (my nose was already raw from the TP), and wash cloths (they are not provided here), and, of course, a Coke.  It’s 6:36 p.m., here, now and I’m feeling a lot better.  BTW, the doc attributed my abrupt decline in health to lack of sleep and the stress of traveling.  I’ve made a decision to completely turn my phone off during my sleeping hours.  I usually put it on vibrate and then lay it on my bed, however, I have it set to tell me if you’re flipping a light switch on in Arkansas, so it makes for a very disruptive night.  I can’t help it!  I don’t want to miss anything or anyone!!

Before I sign off, I wanted to share something cool from today.  When the nurse came in to give me my pillbox and thermometer, and get my height and weight (I’ve lost three lbs.), her phone rang.  Her ringtone was “Whistle” by Flo Rida.  Crack me up!

It’s time for me to get to bed and for you all to let me sleep on it…baby, baby, let me sleep on it.  🙂  Oh, here’s a pic of my pillbox.  I’m assuming that’s my name written on it.  I think it looks fierce!  🙂

My pillbox.  The sections are labeled "Morning", "Midday", "Evening" and "Night" in English & Russian.

My pillbox. The sections are labeled “Morning”, “Midday”, “Evening” and “Night” in English & Russian.

Good Day, Sunshine…Good Day, Sunshine…

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Good Day, Sunshine…Good Day, Sunshine…

It was quite a productive, sunshiney day in Moscow, today.  I knew that I would be getting the “swabbing” tests done, so I got up at 6:00 a.m., jumped in the shower, and they were here before 7:00 a.m.  No need to get your panties in a bunch (like I did)…all three swabs (sinuses, mouth, tush) took 1 minute (yes, I was counting the seconds!).   A couple of hours later, I hear a knock at the door, and it opens to a nurse with a wheelchair for me.  We take the underground tunnel to the other side of the hospital where I have an MRI of the brain and cervical, a cardiac ultrasound, and a pelvic ultrasound.  During all of this testing, I haven’t eaten, because I had to fast for the abdominal ultrasound.  It’s closing in on 11:30 and I’m ready to eat my arm off.  We finally head back to my room and I’m assuming we’re done.  I chow down on a piece of bread that was left from breakfast, sit down for two seconds, and another knock at the door with the nurse and a wheelchair.  Time for opthalmic testing!!  I finally make it back and another knock at the door.  It’s Dr. Fedorenko, saying that he has arranged for me, Tammy and Jeff to have our pics taken with my HALT MS shirts on, and that after our photo op, he wanted to meet with me to discuss the results of my tests thus far.  The photo gathering was bittersweet, yet fantastic.  Fantastic because it was the first time that we were all able to meet face to face (at one point or another, one of them was in isolation, so, meeting wasn’t a possibility, except for Skype).  Bittersweet, because we had to say our goodbyes and watch Jeff and his wife, Johanna, ride off into the sunset, me, knowing fully well, that would be Tammy leaving at the end of the week and I would be the one standing there with misty eyes, and my lower lip sticking out and quivering.  Three Americans came together from different corners of our country (Hawaii, Washington, and Pennsylvania) for a common cause…to HALT our MS and to restore our futures without it!  Cue the Star-Spangled Banner!!! 🙂

I head back to my room, chow down on some delish beef stew and wait for Dr. Fedorenko to arrive.  Upon his arrival, we discussed the results from all of the tests that I’ve had since Friday which included ultrasound of the legs; cardiac ultrasound; abdominal ultrasound; opthalmic testing; MRIs and bloodwork.  So far, EVERYTHING is within normal range, EXCEPT for my brain.  He said that there are 10 enhancing lesions visible on my MRI, one of those sits on the rim of my cerebellum which controls balance…REEEEAAAALLLY?!!  Was that a surprise?  No!  He said that there could be a couple of lesions that are actually two lesions combining or one lesion that looks like two, but, for the most part (I saw the MRI images), my brain is lit up like a Christmas tree.  Just put an angel on my head and start singing “Oh Christmas Tree, Oh Christmas Tree”.  ha ha  He confirmed that it didn’t matter how many lesions there were, that the efficacy of the treatment would remain the same.  Based on the volume of the inflammatory activity, he also reiterated his recommendation for me to have the prophylactic (preventive) treatment of Rituximab when I return.  Fair enough.  I saw his point on the images in black and white…well, a whole lot of white!  All of my other test results, including bloodwork, were all within the normal range.  Before he left, Dr. Fedorenko asked me if he could purchase one of my HALT MS t-shirts.  He was very intrigued and pleased when we told him the story behind them, and when he came to my room, I showed him the photo gallery on my blog of the traveling t-shirts and he was delighted.  I had one for him in my suitcase that I had planned on giving him at the end of the treatment, but, I couldn’t resist and had to give it to him immediately.  He loved it!!

Tomorrow, I will have a CT of the chest (I think) and maybe one other test (can’t remember…two hours of sleep last night).  He said that things are looking very good and that, when I am given the green light, he would like to start treatment as soon as possible.  I would begin with stem cell stimulation shots.  More on that when we get to that crossroad.

I will leave you with a couple of pics from today, right before Jeff departed (they are clickable to view a larger image).  Aloha!!!

Dr. Fedorenko consulting with Jeff about certain antibiotics, etc., that he will be taking for the next few weeks.

Dr. Fedorenko consulting with Jeff about certain antibiotics, etc., that he will be taking for the next few weeks.

 
The 3 MSketeers!!  Me, Jeff, and Tammy!

The 3 MSketeers!! Me, Jeff, and Tammy!

The nurse's station outside of the isolation rooms.

The nurse’s station outside of the isolation rooms.

Jeff, Dr. Fedorenko and Tammy

Jeff, Dr. Fedorenko and Tammy

Up All Night…

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After two days of sketchy to no internet service, I am finally up and running with a fabulous modem that services all of my electronic comforts.  I am very grateful to the hospital staff who obtained and installed the equipment for me.  Over and above all the excitement, I’ve been up all night…find out why, below…

Review of the Last Two/Three Days:

Me, Doug, Mom and Carson traveled seamlessly to  JFK airport in New York.  Carson and Doug’s return trip was a little more on the wild side and almost included a trip to the Bronx.  Carson solved their navigational issues by putting on her “lucky leopard shoes”, and programming the maps on Doug’s phone, which lead them out of the city and safely back to the Cove.

Mom and I took a direct flight to Moscow (no layovers).  It was approximately 10 hours which were relatively pleasant and time flew by faster than expected.  The most uncomfortable part of the flight was my behind (note to self…take small pillow to sit on for return flight).  The Delta staff was very accommodating to me in New York and when we arrived in Moscow.  They provided me with a wheel chair and delivered me to all of the checkpoints and to the gate.  In Moscow, they also provided a wheelchair for me the entire way to baggage claim and then on to meet our taxi driver, who was pensively waiting with a sign that clearly said “Brooke Slick” on it.  Why is it that I have to travel to another country in order for people to be able to remember the “e” on the end of my name?  ha ha   Via taxi, we traveled from the airport to our hotel.  I am convinced that the driver has attended Richard Petty’s racing school.  It was one wild ride.  They have lines on the road just as we do, however, in Moscow, they are more of a suggestion than a rule.  Upon arrival at the hotel, we were very pleased to be greeted by an English-speaking  attendant, Ana, who was very kind and patient, in particular, when I left my passport in the taxi and we had to wave him down to look for it (no passport, no check-in).  Our room is much nicer than we expected with all the bells and whistles.  However, the internet service was touch and go.  I had to sit in the bathroom or on the floor by the front door just to get two bars.  Mom, has since been transferred to another room, that has “guaranteed” internet service.  She said that it was actually an upgrade in terms of accoutrements, however, the price remained the same.

The first night, we had the pleasure of meeting with Johanna, the wife of my U.S. friend Jeff (from Hawaii), who is currently finishing up his HSCT here at Piragov Hospital.  She knows all the tips and tricks and was able to procure a cab for us through the hotel concierge the morning of my admission to the hospital (yesterday).  When you arrive at the hospital, it is gated and guarded by security.  You must go through a security checkpoint and must have a pass, which Johanna had so we were able to slip through.  She called Dr. Fedorenko for us and he came to greet us.  He is only 37 years old, and an incredibly sweet and attentive doctor.  We were transported (me in a wheelchair) through underground tunnels to the opposite side of the hospital, where Dr. Fedorenko accompanied me through the administrative offices to sign all of the same types of forms that you would in an American hospital.  This is also where we made our first payment of $1,000 which includes the first week of testing, that confirms whether or not you are healthy enough to endure the transplant.   For those of you planning to have HSCT in Moscow, please make sure that your bank knows that you will be in Moscow.  Even though I did notify my bank, they declined my bank’s Visa card and I had to use another Visa to cover that expense.  All of these tests follow the international  protocol for stem cell transplant and include, bloodwork, xrays of chest and sinuses, abdominal ultrasounds, EKG, MRIs, CTs and pulmonary tests, and swabbing of all your orifices, and, yes, I mean ALL.  Ladies, one of the ultrasounds is trans-vaginal, so, you will have to check your pride/prude at the door (not easy for me).  I reveal that tidbit ahead of time, because knowledge is power, and nobody likes that kind of surprise.  That would be like showing up at work one day and your boss saying “PAP smears for everyone, today!!”  ha ha  So far,  I have only had the Xrays, ultrasound of the legs, EKG and bloodwork.  The fun tests begin on Monday.

I am currently being housed in a suite that includes two rooms.  One rooms contains my bed and a love seat-sized sofa.  The adjoining room includes a refrigerator, microwave, small table and two chairs.  The bathroom is located off of that room.  There is a large window in each of these rooms that overlooks the courtyard.  It’s a nice view, if I do say so.

View #1 from my window.

View #1 from my window.

View #2 from my window.

View #2 from my window.

My bed, etc.

My bed, etc.

My kitchen area.

My kitchen area.

Much of yesterday, was spent doing testing and waiting about 4 hours to get my internet up and running.  They decided that rather than getting a hotspot, that they would get a modem that could handle up to 10 devices.  God, I love these people!!  Dr. Fedorenko informed me that I would not have to purchase the modem, because it could only be used in Russia, anyway, and that they would be able to offer it to future patients.  I will, however, have to pay for the internet service while I’m here, which for the entire 5-6 weeks is only a little over $100.  It allows me the ability to stay in touch with friends and family, as well as pay my bills online.  I’ve already been Skyping with my husband and my daughter, and it really is worth every last cent of that $100.  Connectivity rocks!!

Yesterday, Dr. Fedorenko had planned on speaking with me around 3:00 p.m., but by the time they were done working on my modem, it ended up being closer to 4:30 p.m.  It turns out that the conversation he had with me was one that I was not expecting, but that I’ve been up all night digesting and I’m already at peace with it.  What he informed me of was, that after reviewing my medical records and having an in-depth discussion with me about the history of my MS, that he considers me to be SPMS (secondary-progressive MS), and not RRMS (relapsing-remitting MS).  Was I shocked at his conclusion?  No.  Honestly, I had thought for quite some time that I was, but after reviewing some of my neurologist’s notes from this past November, I was still labeled RRMS.  That was the first little pin to my balloon.  The next pin was a little larger, and the one that I sat up all night researching.  He told me that based on the fact that my MS had resisted 4 different MS drugs as well as steroids, he recommended that when I return to the U.S. that I do a maintenance therapy of Rituximab.  The stem cell transplant that I am having will halt the MS, however, to further guarantee that no relapse would occur, he recommended the Rituximab.  He said that it is not mandatory, but simply a pre-cautionary measure due to my history of STUBBORN MS!  So, what is Rituximab?  It is used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders.  It turns out that the Altoona Center for Clinical Research, which is where I used to have my Tysabri infusions, has been involved with Rituximab, and I plan on contacting them while I’m still here to see if they administer it there.  I will, of course, have to have my neurologist or hematologist/oncologist order it.  If either of you happen to be following along, expect a call from me.  After staying up all night worrying about it, Dr. Fedorenko answered all of my questions this morning and said that I would require four infusions (1 every 3 months/4-5 hours long) for a year.  Then, the deal will be sealed for good. The first of those infusions will be done before I leave here in Moscow, where I will be able to be monitored for any allergic reactions, etc., and the other three stateside.  My friend, Jeff, who is here for a transplant for MS, had his Rituximab infusion here yesterday, and we were able to meet and chat afterwards, so, my fears have been quelled.  The last items that we discussed this morning were the fact that he thinks that I am at the very beginning of the progressive stage.  He said that RRMS goes up and down and up and down and then starts to simply progress.  He said that I am right on the cusp of progressing.  Basically, I got here just in time!  Thank you, God, Amy Peterson, my family, friends and a community full of people who helped to get me to this facility to rid myself of this monster just under the buzzer.

Tomorrow, as well as today, are days off for me.  Although they are a hospital, they only do testing on the weekdays and mine will continue on Monday.  I should have my definitive “yes” or “no”, no later than Thursday.  It is my hope that there are no red flags that would keep me from proceeding with the transplant.  Until then, mom is currently out learning her way about town with Jeff’s wife Johanna.  She just sent me a message saying that they had taken the Metro to Red Square and it was amazing.

I must note that even though there is a language barrier, it doesn’t stand in the way of communication or proficiency.  They are very caring and a few of them know a little English.  The food is an entirely different story. The good news is that I’m not a big eater to begin with.  Even better news is that they serve bread with everything.  When they say “man cannot live on bread alone”, well, yes they can.  Today, I actually had some of the best mashed potatoes that I’ve ever had.  According to Jeff, that may not be the case by the time I leave, and I’m thinking that the tea that they give me that smells like raisins will probably be looking like champagne by the time I depart.  I did bring Lipton soup packets, microwave popcorn and oatmeal as a backup, but I haven’t had to break into them yet.  The drink packets (Kool –Aid, Hawaiian Punch, Lemonade…) and water bottle that I brought with me have been a Godsend.  They have a water cooler where I am able to fill it with water that is safe to drink.  They do not regularly use salt or pepper to season their food/soups.  Once again, not a big deal.  Have you ever been to Ireland?  I think they top the list of bland foods.  No offense to my Irish friends.  They are fabulous!  I lived with a Lebanese family in Australia for a month in the late 80s.  Their food and seasoning was completely beyond anything I had ever experienced and I survived.  Given that, my little Russian culinary adventure should be, well, palatable.

That’s it for now.  Tomorrow (Sunday) should be event –free, so I probably won’t be posting until Monday.  Thank you all for following along.  It’s all good in the Moscow hood.

Time Keeps on Slipping, Slipping, Slipping…

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It’s 1 1/2 weeks until liftoff and time truly is flying by.  On the other hand, I feel like I’m spinning my wheels.  A large part of that is the fact that I am constantly in touch with Jeff and Tammy, my two American friends, who are currently in Russia and are about a week apart in the timeline of their treatment.  I finally got to meet them via Skype last week.  They are both as comical and friendly as I had imagined.  I’m so blessed!  So, every day, I see them each progress from landmark to landmark of the transplant process, while I quietly cheer from the sidelines an ocean away…and wait for my turn at bat.  The upside to the ability to communicate with them (thank you, internet, Facebook & Skype), is that I become privy to all of the tips and tricks of traveling to Moscow, in general, as well as residing at the Pirogov Hospital for a large majority of my stay.  Even they are learning new things every day and coming up with “If only I had brought X with me” observations.  Little things like knowing that there’s an ATM in the hotel lobby, that the breakfast buffet is approximately $18.00, that the cab ride to the hospital is $20 each way, that, if there is more than one person in the hospital room with you when it’s time for a meal, they will actually bring a meal for your visitor, too.  Today, they suggested bringing packets of soup mix, oatmeal, drink packets, and even microwave popcorn from the States.  Brilliant!!  I’ve also become enlightened about the medical/hospital protocol with regard to personal privacy and physical boundaries.  Basically, there are none, and it’s my understanding that the first week of testing will put this prude to the test.  You know the old phrase “Let it ALL hang out!”?  Well, apparently, that’s exactly what I’ll be doing.  I am so honored to have my brave comrades share their experience with me, and I plan to do the same for those to follow, just as Amy Peterson did for Jeff, Tammy and me.  Watching every step of this treatment over the last two weeks, I can tell you that there is no question that it will be the most difficult task, both physically and mentally, that I’ve ever confronted.  It is uncomfortable, sometimes painful, exhausting, invasive, unpredictable and awe-inspiring, all at the same time.  Tomorrow, Tammy begins her first of four days of chemo and Jeff, who has completed his chemo, and received his stem cells yesterday, will be going into isolation.  Very soon, I will be joining them in my attempt to fly like an eagle, till I’m free…from MS.

All I’ve Got is a Photograph…

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All I’ve Got is a Photograph…

Well, actually, I have quite a few photographs of family, friends, strangers, co-workers, and even Elvis, wearing my KEEP CALM and HALT MS t-shirts (limited quanitities still available).  What started out as a way to raise funds for my trip to Moscow, has spiraled into a global challenge to see and be seen in an effort to raise awareness about stem cell transplants for MS.   These t-shirts have traveled from sea to shining sea, from island to island and mountaintop to valley (check out the Photo Gallery).  As I’ve mentioned before, you won’t be seeing any billboards, commercials, or brochures at your doctor’s office for this treatment any time soon.  It’s not a new procedure worldwide, but it is newer in the U.S. for MS, and there are doctors in the U.S. out there making all of the right moves to have it FDA-approved.  It will happen…in about 10 years.  With a little help from all of you, maybe it could be sooner.

If you think that word of mouth isn’t powerful, all you’d have to do is use the example of a Facebook stem cell transplant forum that I joined last fall that had a little over 200 members.  Now, it has over 600 and is climbing, daily.  Why?  Word of mouth is why.  Remember that old shampoo commerical that says “They tell two friends, and they tell two friends, and so on, and so on…”?  It’s as simple as that.   I’ve come to find that so many people know someone with MS or someone whose life has been touched by someone with MS.  Please, tell them about this treatment.   Please, send them to this blog.   I have made it my mission to tell as many people as I can about this opportunity that can forever change the lives of so many MS patients, who, like me, thought they had run out of treatment options and had nothing left to look forward to but an uncertain future.  No stress there, right?

Interestingly enough, when a few of my friends recently took a trip to Las Vegas (pics in the Photo Gallery), they decided to showcase my Keep Calm t-shirts all night.  They said that both entertainers and passersbys were truly interested in knowing all about HSCT (Hematapoietic Stem Cell Transplant) for MS.  Elvis was all over it!!!

To all of you out there, big mouth or small, please help me spread the word.  As is evidenced in my Photo Gallery, spreading the word can actually be a lot of fun.  To those of you who have already purchased one of my tees, but haven’t sent me a pic yet, I challenge you to get crazy with it.  I’m leaving for Moscow in less than 3 weeks.  I need you to keep the buzz going while I’m there.  All I need is a photograph…

I’m Gonna Pop Some Tags…

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If you’ve ever asked yourself, “Why would Brooke go the entire way to Russia to get rid of her MS?”, today would be a glaring example of why I think absolutely nothing of flying 10 hours, enduring 6 weeks of agony and up to 2+ years of recovery to make that happen.

To the best of my knowledge, there is no one that I know who likes to shop more than I do.  Well, maybe one person, and I just so happened to give birth to her (love you, Carson).    Today, I go to JCPenney for a pair of twill pants.  First off, have you been in there lately?  It’s like they put off a bomb and everything landed in a different spot than it has been the prior 10 years.  I walked the entire way around the downstairs and could not find these pants.  I asked the sales person where they were.  Surprise!  On the opposite side of the store…The store with carpet, tile, carpet, tile, carpet, tile.  Uneven surfaces are no friend to me (my track record includes 3 falls at the mall).  I find them, go to the dressing room and begin the process of trying them on.  Have you ever tried on clothes when you’re completely intoxicated? (PM me if you don’t want to reveal publicly) ha ha.  That’s what it’s like with MS.   And, of course, I have to lift and place my “bad” leg into the pants (like you would a child).  I stand up, try to button the pants with one hand, while holding onto the wall.  They fit!  I begin redressing, which includes putting my foot brace back on, adjusting the tightness of the shoe, and the two straps of the brace.  I finally get to the checkout and I’m sweating from head to toe, oh, but not my right side because, thanks to MS, it doesn’t sweat anymore.  You’d think that was a blessing until you notice the people at physical therapy staring at the freaky chick who’s only sweating out of one armpit.  They ring me up and I find that the super cute grape-colored windbreaker that was on clearance for $10, was actually down to $4.  Score!!  So, if you’re like me, you get all excited about your deal of the century.  Well, for someone with MS, at least for me, when you get excited, either for something happy or something stressful  (MS can’t tell the difference), I start to shake, especially my legs.  When my legs shake (it’s called clonus), it’s more difficult to walk, which makes it more exhausting, and by the time I make it back to the car, I collapse into it, with my glow from the thought of the fabulous grape-colored windbreaker completely erased.   MS is such a FUNBUSTER!

So, if you ever find yourself tempted to question my motives for going to Russia…IT’S ALL ABOUT THE SHOPPING, PEOPLE!  IT’S ALL ABOUT THE SHOPPING!

If you’ll excuse me,  I’m “gonna pop some tags” off of the new shoes that the Fedex man just delivered to my front door.  How you like me now, MS???!!!

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!

I’m So Dizzy, My Head is Spinning

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No, it’s not the MS,!  It’s my current state of affairs.  More like, trying to get my affairs in order.  No, not like my 6-ft. under affairs!   It’s, simply, everything that goes into planning and paying for an adventure of this magnitude.  It gets a little overwhelming, even for someone who thrives on “overwhelming”.   Let me tell you, if you ever thought you wanted to go to Russia…for anything, you’d better really want to go, and plan well in advance.  Beyond a passport, there is the visa, and you can’t get the visa, without an invitation.  That’s right.  You have to have a personal invitation from Russia to get the visa.  No invitation, no visa, no stem cell transplant, in that order.  Luckily, mom and I are using a passport/visa concierge service that has been handling everything, which is fabulous, and, so far, the only glitch was having to go get a second set of passport photos taken because the U.S. Department of State rejected our original ones.  Talk about a blow to your self-confidence!  Geez!

In addition to all of the paper-shuffling, there’s all of the e-mailing, texting, messaging, and phone calls from all over the country/world.  Thank God for my Razr phone that notifies me, even if my friends in Australia sneeze.  It makes for a very busy, noisy and oftentimes, exhausting day.  Given that it takes me about 25+ minutes just to put my socks and shoes on comfortably, you really do have to pull all of your time-management skills out of your back pocket, at a moment’s notice.

Oh, and there’s more!  It’s been a fundraising bonanza in my little corner of the world (check out my thermometer).  I have friends, family, strangers, etc., flying around me (hence, the dizzy part) making donations, ordering t-shirts, planning fundraisers, holding fundraisers and working their little hearts out in an effort to make this dream a reality for me.  I am blessed.  All the while, in the Mom Cave, during my free moments, I’m trying to figure out how I can get the word out and give hope to as many MSrs as possible who have found themselves in my same position.  Don’t we all want to save the world?!!!

One of my most favorite little treats during the past couple of months has been my friends and their families taking pics of their Keep Calm and Halt MS t-shirts (info available on my Fundraising page).  They’ve been sending them to me from sandy beaches, mountain tops, Disney World and beyond.   I even had a woman from the State of Washington, who is having this procedure done in India, e-mail from her hospital bed to order five of those t-shirts.  When I say I have people, I really do!  Check them all out on my Photo Gallery page of this website.  They are so fun!

Oh, just received another message!!  Time to go!  Like a whirlpool, it never ends!!  Yes, I overuse exclamation points!  I’m excited, already!!!!

I Get Knocked Down, But I Get Up Again…

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You’re never gonna keep me down!

For those of you who may be following along in hopes of possibly having HSCT, please know, that somewhere along the way. you may be met with resistance.  Not from just strangers, but from medical professionals that you’ve come to trust and respect.  In particular, if you’ve been the type of patient who has always played by the rules.  Is their ego bruised because they were unable to sufficiently help you under their care?  Is it the money that they may stand to lose if you are no longer in need of their services?  Whatever the case,  you need to keep your chin up and remind yourself, that you didn’t want to do this, but the certainty of knowing what will happen if you don’t, is what drives you to this next logical step.

I’ve already hit a couple of bumps in the road with my own neurologist and my own primary care physician.  As part of the “maintenance” protocol of this treatment, it is recommended that you become acquainted with a hematologist who can monitor your bloodwork upon your return.  Sounds simple enough.  However, some doctor’s offices require a referral from a doctor, in order to be able to access your records.  Not a problem.  I’ll just call my PCP.  I’ve already discussed with him, in detail, the fact that I’m getting the transplant done in Russia and he told me to “keep me in the loop” and “let me know how things go”.  So, imagine my dismay when I called him for the referral to the hematologist and he said that he wouldn’t do it because he didn’t order the transplant.  Can you say “I’m not getting my hands dirty!”?.  Well, when Miss Play by the Rules hits a roadblock, she sends a single text to a best friend, whose brother is friends with the hematologist.  Within hours, the hematologist’s office is on the phone with me and, given that I’m not just a chemo patient, but a transplant patient, they kindly referred me to a hematologist/transplant specialist in Pittsburgh, who said that they “would be happy to see me”.  Na-na, na-na, boo boo, Mr. PCP!!

Next up, my neurologist of 13 years, whom I absolutely adore and respect, has his nurse call me to say that, “Since you’re seeking treatment outside our facility, that there is no reason for him to see me at my February appointment, and if I did, it would solely be to measure my level of disability…period.”  She proceeded to tell me that it’s very difficult to get an appointment with him (Oh, gee, really?  Now it’s a favor to see me?!!).  In the blink of an eye, I became a number and not a patient/friend.  I was so taken aback, that I couldn’t speak and the next thing you know, I’m crying to her and telling her that it didn’t sound like him at all…and it doesn’t.  I know that he doesn’t agree with the treatment (even though he said it would definitely “stop new lesions/activity”), but he specifically told me that he “would be there for me and he would continue to be my neurologist”.  I plan on holding him to that!

The moral of this story is that some doctors will try to make you feel guilty, some will try to sidetrack your efforts, and some “will be happy to see you”.   If this treatment was FDA-approved and available to the public at large in the U.S. in less than the expected 10 years for approval,  I would do it!!  Don’t beat me up over it!

In the meantime, and in the words of Chumbawumba…Don’t cry for me, next door neighbor.  Onward.

Welcome to the Hotel California…

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Well, actually it’s a Best Western, and soon to be a second home to my mother during our stay in Russia, but, for much longer than we had anticipated.  We’ve officially  just hit our first tactical “bump in the road”.  I and the two other Americans who will be getting stem cell transplants at the same time that I am, were informed that, due to the increased popularity of this treatment, that the hospital will no longer be able to house guests of the patient during their stay.  Originally, we thought that Mom would be able to stay with me for at least the first two weeks, before I entered the “isolation” period.  Mom, you can check out any time you like…but you’ll have nowhere to go.  Sorry.

Is this a logistical game-changer?  No.  I’ve already contacted the travel agent.  Is it a financial game-changer?  Well, yes!  Those extra 14 days in the hotel will cost around $1,500-2000!  Great!!  Time to put on my thinking cap (MS hasn’t taken that, yet!).  So, how popular do you think a lemonade stand would be in January?  Ok, maybe it’s taken a little…LOL  Onward!!

I’m too Sexy for my Shirt…So Sexy it Hurts!

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halttshirt

Well, actually, my shirt doesn’t hurt, but my MS does…a lot! This is the logo that was on the shirts I sold for $10 each to help fundraising efforts.  It was something that I was able to accomplish on my own and made over $2,000 doing it.  My tip…sell for low $ and you’ll sell more!!! Oh, and about the “sexy” part…MS is NOT sexy!!

Rockin’ Robin, Tweet Tweet Tweet…

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You may have thought that I’ve been hiding out in some makeshift bunker waiting out the Mayan Apocalypse, but I’ve actually been trying to savor the holidays and the thought of what this new year holds for me.   It’s a year, that for the first time in many years, is filled with very real hopes, dreams and new adventures.  One of those new adventures is Twitter!  In order to play along with social media networking standards of today, I find myself with no choice but to tweet (my 19-year-old is mortified!).  For me, it’s all about getting the word out there, and if that means using Twitter, then Twitter it shall be.  I won’t be leaving behind my old staples…Facebook, e-mail, texting, my big mouth, etc.  And, of course, there’s the telephone.  Remember those?  Even though I have a Twitter account, @iammsslick (follow me, below, right), and even a few followers,  I have not yet tweeted.  Be patient…I’m working up the nerve.  Stem cell transplant?…no fear.  Twitter?…breaking into a sweat, right now.  I know.  It’s silly.

Much of today has been spent on the phone.  I was on hold with Vitalchek for 45 minutes while I tried to find out the status of my birth certificate request.  As my brother recently mentioned to my mom, “It’s not easy hauling a stone tablet out of their basement.” (he thinks he’s funny).  Then, on to calling the passport/visa concierge service in DC, www.g3visas.com, that we will be using to acquire our documentation required to travel to Russia.  A “concierge” service handles everything…one-stop shopping!  And, well, I just like to say the word “concierge” (kon-see-airzh).  It makes me feel swanky.  ha ha  Next up, I had to schedule a consultation with my dentist.  Given that I will be without an immune system for a certain amount of time and then I will have a tiny, little fledgling one as it grows, I need to take every precaution that any potential source of infection in my body is addressed before my arrival.  That includes my dental health.  So, I’m heading in for an inspection and a quote for services.  I’m going to see if they’ll throw in a tire rotation for free!

Yesterday, was spent going to the bank to deposit some generous donations (see my rising thermometer to the right) and trying to get organized for a planning meeting for a fundraiser that we plan to be holding in March (further details after the meeting).  I also had the pleasure of meeting with Kaylani Gunning of the Verizon store in Roaring Spring.  She saw that my daughter had made a post on Twitter about my quest to Russia (there’s that Twitter, again).  She spoke to her manager, and during the month of March, their Roaring Spring, Hollidaysburg and Huntingdon stores will be taking donations to benefit my trip.  What a wonderful and thoughtful surprise!!  Finally, last night, I had an in-depth interview with Janice Sell of the Morrisons Cove Herald.  I believe that article will be published within the next week or two.  Within the last two weeks the Broad Top Bulletin and Huntingdon Daily News have also covered my story.  In addition, Charlotte Ames, the Healthcast reporter from WTAJ TV-10, requested my phone number from a friend, which I gladly provided (Thank heaven, I’m getting my hair cut tomorrow!).

So, there you have it!  No apolcalypse…no fiscal cliff…no call from Ellen Degeneres, yet…just me, singing, “tweet, tweet, tweetly-tweet”.

Let’s Get it Started in Here!!

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Well, it’s been two weeks since my stem cell transplant coming out announcement and I have been frantically putting together this blog, so that I can begin my cyber-diary of the events leading up to my transplant in April, 2013.  A very special thanks to my fantabulous blog wizards, Phyllis and her son, Morgan, in Atlanta, for helping me to make this all happen in such a short span of time.  Holy widget!!  Mom and I have been making travel arrangements, ordering birth certificates, visas and passports, buying luggage (I haven’t flown in 20 years!), all while trying to prepare for the holidays.  It’s all working out, but time is flying by.

I wanted you all to know that people have been coming out of the woodwork to show their support, and it has been incredibly humbling.  I was so afraid that people would think I was some crazy nutbucket for considering this treatment, but, for those who really know me, that’s just not how I roll.  I am a researchaholic, and I am 100% certain that I have made the right decision.

Now, about this blog…Although what I’m about to have done is incredibly serious, I am going to be keeping this site as light and fluffy as possible, even though, there will be days that may be a little dark and desperate (feel free to cover your eyes or have a glass of wine to get through it).  Therefore, I plan on titling each of my posts with a song title or lyric that represents what’s going on or maybe how I’m feeling about my situation on any particular day.   It should be quite comical.  I hope you play along, and, before you know it, it will be mid-June and I’ll be back in the Cove, convalescing. 

Please note that I will be posting my blog posts on Facebook as well, and you have the capability to get my posts sent to you via e-mail by signing up on the lower right-hand side of this page.  That’s what I did when I followed Amy Peterson’s blog, and it was like getting a juicy little morsel of info/updates every morning in my e-mails.

Last, but not least, please note the fundraising thermometer to the right.  I’m going to do my best to “Raise the Roof” in an effort to put a dent in the expenses that will be incurred during this gamechanging endeavor.  In addition, under the “Fundraising Efforts” tab above, you will find instructions on how to donate at any local M&T Bank as well as information regarding any upcoming fundraising events.

Thank you all for your continued good vibes, now…Let’s Get it Started in Here!!