+ 6 months update !!

First of all ... let me say I'm sorry.

Sorry for not updating my blog sooner. Time has gone by so quickly. Before I had my treatment, I always complained that most other bloggers seemed to stop blogging after having HSCT. So unfair ... now I couldn't read more about how they were doing. Did the treatment work ? Well, here I am now, not having updated anything in 6 months. Bad me .. lol.

Quick rewind to my last days at Pirogov, Moscow. Even after 6 months have gone by, I still think the staff in Pirogov is outstanding. You will be in good hands. Doctor Fedorenko is a caring and remarkable doctor. Anastasia is as nice and bubbly as everyone says. The staff will take care of you, will clean up after you, will feed you and will most importantly want you to be in no pain or discomfort. Yes, the food isn't 5-stars, but you will survive. You might even be adventurous enough to try tongue and liver. The city is as modern as any city in North America. If you get a bit of time to go touring downtown, you won't be dissapointed.

And yes, there were some challenging times over there. I had to focus on my breathing when they were putting the pic line to get my stem cells. It wasn't too smooth, it bothered me, I couldn't really sleep with it on, but it can be done. The transplant was different too. All the staff knew what to do, there were no mishappenings. But to me it was very powerful. I was never in any pain, but I did feel my heart pumping heavily. All I remember was looking at Dr. Fedorenko (who never leaves your side) and telling him 'heavy heart, heavy heart'. He asks you to tell him what you're feeling, and that's how I was able to describe what I was feeling. And after the longest 60 seconds of my life, it was over. And I felt tired, and went to sleep.

After that, there was a whirlwind of thoughts. I got to say goodbye to my two buddies that were sharing this journey with me. Off we go to Isolation. I tried to get some routines down to let time go by quickly. Isolation was done in 7 days and off I could go to the world. I decided to take a short trip to a grocery store and get some supplies (yes, eating supplies) to enjoy in my last few days at Pirogov. Bought ice cream bars to share with Steve and Ange. I think we ate pizza more than once. Believe me, pizza was like a deluxe dinner by now ... lol. Now .. did you see that ? After transplant I was able to walk by myself to the grocery store, a couple of blocks away. Yes, I was tired after that, but oh it was so worth it !! Then there were the real goodbyes. That was sad, frightening and great at the same time. We were all off to our families and homes. And I was leaving the people that helped me leave MS back. So grateful to them.

The trip home was a long one. But I walked it. I walked the airports, slowly, with my cane, but I walked them. I flew from Moscow to Rome, 6 hours between flights. I had big gastronomic dreams for this airport. Italy I thought, endless dishes of pasta at the airport. Well, let me tell you. Two words. Tiny airport. No pasta. Niente !! The airport is so small that once you get out of the plane you have to go down the stairs of the plane to the parking area, then enter a bus that will drop you off at the airport. Big shock !! After a dissapointing leg in Rome off I left to my family, my home in Canada. I was thrilled, excited, couldn't wait to hold my four children and tell them how much I had missed them. My husband. Every time I thought about that I'd start crying. And I'll blame this on the steroids. So instead of thinking about that, I tried to focus on what was coming next. Get over the flight, go to sleep. By the way, that dinner in the plane was the best vegetarian lasagna I've ever had in my life ... lol. Got to Toronto, focus. Get to Customs. Passed Customs, focus, go get the bags. Got the bags, focus, go pass the door. After I pass the doors I see my children, let all go and start crying. Lol ... best feeling ever !! I did it. I had HSCT, I made it home and I was still alive !!

The feelings I had at that moment going through my head were so many. Relief, love, admiration, happiness, thankful, blessed. Oh how I missed everyone !!

My first challenge was waiting for me at home when I look up the stairs to go to my bedroom. The stairs looked like climbing the Everest. It would have been so easy to go sleep on the sofa that night. But that wouldn't be me. I made it upstairs and I slept in my bed. Happy.

The first few weeks were different. Everytime I looked at myself in the mirror made me want to scream. I was bloated, my face was like a balloon, and I had no hair, I remember crying alone in the bathroom a lot. I was feeling very overwhelmed. But every tear helped me to put up a good face every time I got out of that bathroom. Made that day count. My feet were swollen too. I had to put them up a lot those first few weeks. I needed a nap every morning but in general I went back to do the usual things. Made my children's lunches for school, do laundry, basic cleaning (although I did have cleaners come to do the full house for that first month), cooking, etc. The second week I was home I went grocery shopping. I avoided crowds the first while. But I didn't hide. And I was fine. Going back to all those activities, helped me heal.

Did the treatment work ? I get that question a lot. Yes, my progression stopped. I am not worse than before. It worked. I'm not hopping on one foot, or running on the sand, or skating on ice. HSCT is not magic. It takes work. But it's been 6 months and it worked. I wake up every day, ready to get on my list of things to do. Before, I'd stay in bed wondering what was going to go wrong this day. Now I don't, and nothing goes wrong. And I persevere.

There's days that my legs feel stronger than others. Sometimes I go upstairs without holding on the railing and I go ... wohooooo !! And then I'm back to holding on the railings. And you know what ? It's ok. I'm grateful that's my only problem.

I never had too many symptoms to start with. And they all remain the same more or less. Tingling in my left fingertips, same. Drop left foot, same. Balance, better some days than others. Energy ... up up up !! I'd say the biggest improvement is in my energy.

I know it's still early in my recovery. There's still lots of time to improve my mobility. And I'll be working on the exercises the physio gave me back in June. I did very well on those until the children got out of school for the summer holidays. Yes, I have no problem to blame that on them .. lol. But I did do some swimming and bike riding. I never stopped moving, I had a pedometer and my steps were increasing, until it fell in the pool. Needless to say it wasn't waterproof. But I keep moving, walking, keeping busy.

My husband got me a pair of walking poles. I used them to go on a walking excursion to some nearby caves. I find I feel safer with them when I'm walking on uneven surfaces. At this point I'm being careful. I don't want to fall, I don't want injuries, they would bring me back to cero.

I've been lucky too and haven't gotten sick. I had a mild cold back in May. It took me two weeks to get over it, but just taking Advil I was fine. It was a great summer, lots of memories, hot weather, enjoyed our pool, trip to the cottage, kayak, and seeing everyone enjoying our time there was great. I had to avoid swimming in the lake as Dr. Fedorenko forbid me to do it. But we had good times.

I'm keeping busy. My four year old started school this year, which gives me a free morning every day. So I started volunteering at their schools twice a week. Started going to abstract painting classes. Doing things that I love. Feeling good. Feeling grateful.

:)

Fourth week in Moscow ...

Well, this has been a diferent week.

Spent mostly in my safe door-closed room, called Isolation. The only people that were allowed to come in were doctor, and nurses all gowned in, wearing masks and gloves. And you get used to that. And feel safe. Your immune system is low and you don't want to risk getting any germs, infecctions or anything that might get you sick. So you adapt. Good Doctor will bring you your numbers which will go down at first , but then suddenly, in my case they will start creeping up, almost too soon. Which, again, it's great, but you feel so safe, are you even ready to start thinking you might get out of ISO before ten days ?

As I said before, I'd make a good inmate. Had my routines down.
Coffee in the morning, stretching session going on, shower, vodka solutions that you had to pour over your body every day, got my newly fresh karate hospital pijama every day. I got it down. Then I'd work by the nice window light on my son's stiching project (it will be his Christmas sticking this year). Then wait for our snack at 12. Usually a nap would be fitting, ready to wake up at 2pm, time to eat my lunch and quickly chat with my children before heading for school. Then maybe watch a bit of Netflix, read, lie down again ... Ready for dinner at 6. And I'm not even obsessing with the food anymore. I still keep a food journal, cause I find it's funny, but I've tried the tongue, I've eaten liver, porridge, some stuff I don't even have names for. I usually mix the soups with everything else they bring and they end up being pretty tasty. But that feels almost in the past now.

So after zenning it out for a whole 7 days, Dr. Fedorenko comes in with the biggest smile, opens my door, my numbers are way up and I'm free. Free !! I don't know, should I ? I kind of shake to the idea to get out of my room. It feels so safe. But I did go out, all masked on, shaky, not sure .. Making sure there weren't any dragons or sick people dragging themselves outside, sneezing or coughing ... lol.
And it was ok.

My friend Ange and I were released the same day, and we just hugged it out. Did't want to let her go. It's such a profound feeling going through this together. I just couldn't believe it we were both in one piece, smiling, safe, upright, what a blessing. We got together with Steve yesterday, yes, being ever the gentleman he stayed in for one more day. But again, it was just so nice and unexplainable for other people to understand the joy we felt of just being able to sit, chat and laugh. I'll miss these guys. Meanwhile, you can see Dr. F. walking around, just looking at us with a big smile in his face too. Seeing us outside of our rooms, starting our independence again. I'll be forever grateful to him for allowing me to have a second chance in life.

So now, what's left. Regain my energy. Start taking a few walks indoor first and then venture out. I don't want to overdoit. It's been an intense treatment and I want to do this right. So I still have a few more days left here. My flight leaves home next Friday early morning, so I have until Thurday  to work back on my strenght and I'll be taking all the time I need.

Thank you for taking the time to read this. For the huge support on the page I created in Facebook (Flip the bird in Russia) where I've put a few more pictures.
I feel all the love and I really appeciate it. I always love to hear all the kind words.
I can now start thinking on my way back home and there's no other better feeling like that.

:)

Third week in Moscow ...

I guess it's time for an update.

This last week has been one of the bussiest. Not because of many things happened, but each of them were very intense.

Last weekend I was dealing with four days of chemo, that really the only effect it had on me, was feeling utterly tired. So I slept it, and I slept it and came out of it. Then I had a very welcome day of rest, I got to see my two buddies that I enjoy so much time with.

Then came the day of my stem cell transfussion. What an experience, rushed, quick, intense, heavy sensation on the chest, a quick tomato sauce taste, but mainly heavyness in my chest. Dr. Fedorenko was by my side the whole time, looking at me, wanting to hear all I was feeling. Very reassuring. Having four children has taught me that you can breathe through anything. Pain, heavyness, weird feelings, it will all pass. And it all did. Quickly. The fact that he was telling me it was almost over ... I just trusted. I trust this good Doctor with no regrets. And it worked. Then, I just felt I wanted to sleep, massively, intensely sleep. I know they kept coming in, checking on me, my blood pressure, is she still with us ... lol .. But I just slept. And I made it. And I'm thankful I've had this life changing experience that will give me hopes with a life without MS.

I was awakened quickly cause there's the tradition of throwing our buckets with dry ice where our
stem cells were frozen for a few days. So Ange and I 'gracefully' woke up for this big event. And we got to hear Dr. Fedorenko's beautiful words of new begginnings, we got our Iris pins that I will
treasure forever. Anastasia got to do a little dance, hugs, kisses, tears of joy, very intense moments that I will keep forever in my heart. The Doctor, staff, nurses are all so professional. We are a lucky bunch of people.

Then the next day I got another day off and it would be Steve's special day of stem cell transfussion. I was lucky enough that he asked me to come in and witness his procedure so I could take pictures. I will be forever grateful I was able to see this. So methodical, everyone knew their places their
mission and everything got done perfectly. Steve was great too ! Very brave and I'm sure he may have played it a bit for the camera ... hahahaa .. Joking, you were great. Thank you again.

Then we had a celebratory pizza with a guest from the second floor, Paul from Australia that is just starting all this. I hope we filled him up with hope and positivism. This can be done and it's the best decision you've made so far mate ! What a pizza !! Best one I've had in a while.

A day later the three of us (Steve is catching up quickly !) have gone into Isolation, where we still keep in touch via messages, which is great. I miss them but I know the end will be even greater. We already have dibs on who's getting out first and get us a BIG MUCHO QUESO PIZZA !! So we can celebrate as we should !!

So that's all for now from Pirogov. Days go by slowly but surely. Day +4 for me. I can now start thinking how how little there is left for me to go home and get all my cuddles.

Take care everyone and be nice.

:)

Second week in Moscow ...

A lot has happened, and not much.

I got my stem cells extracted a couple od days ago and got a whopper of 2.9 million in the first try. Must say I was the winner day. A relief to get it done in one day and get that stiff aparatus off my neck. One day off. My partners in crime got their numbers too, one more stubborn than the other one, but we are all good now.

I'm on my third day of chemo and sailing through. No major side effects, just feeling tired. Energy down, but that's to be expected. 

Getting used to the food. I'm a very good patient and eat almost anything. Has to be what my body needs. 

I've come to realize I'd make a very good inmate somewhere. I Keep my room tidy and clean. Do my own dishes. It is very zen. I have my routines which help me go through the day. Lunch time is busy cause it's when my loved ones get up and want to catch up. Thank Goodness I've already gone through the chemo drips and various naps so I'm somewhat awake .. Lol. 

But it's nice to hear from them. It's nice to read the tremendous support coming from everywhere. It loads me up, it makes me happy, it helps me. I don't dwell too much on the heartfelt ones, not because I don't treasure them, but because I'm trying not to think too much. It's easier that way. Keep it light. Keep it happy. 

It's Easter at home right now and I'm hoping my husband got it all done. I remember a year ago, he was working away and I had to toss the plastic eggs outside in the garden the night before, so the children would have their egg hunt in the morning. I remember in the end thinking ... Why did I fill so many eggs ?? Tossing them by the handful .. Lol. A year later I'm in Russia, having chemo, killing (hopefully) the cells that cause my MS. I wonder about Easter next year. 

It's also been great to bond with the two friends I'm going through this, at the same time. We get it. We're in good spirits and that helps. We're bonded, we're bruised (literally), but we laugh together too. So important.

That's all from Russia. Short and sweet. 

No pictures. 

Have a Happy Easter !!

:)

First week in Moscow ...

I'm finally here !!

I made it. I met my brother. I have toured a bit. I'm admitted at the Hospital. I've had good results in every test. I was officially told I could start treatment. Today is my day 2.

But let me start from the beginning.

Leaving my children and husband has been the worst, saddest thing I've ever done. In a long time at least. I felt torn. In the end I just wanted to get out of the house, quickly, like getting a band-aid out. And that's how I left. So quickly that I forgot my scarf, and then I had to go back for my gloves ... Lol.

At the airport I had a bit of time to kill, so I took pictures of the lobby, of the plane. Toyed with the idea of buying something to eat (should have done that, now that I'm thinking about it). So I sat down, start playing games in my ipad, and then I remember ... shit.

Let me capitalize that.

Shit !!

My friends, I forgot to bring my prescription glasses. You may think it's not that bad. But let me tell you, for someone as blind as I am, it is bad. Of course I also forgot to bring two extra contact lenses
in case anything happens to the ones I'm wearing. But right then, right there I realized I'd have to wing it. And at that, I'm great. So I'm still winging it. Taking care of these babies in my eyes like nobody else's business. The only problem I've had was when I was having my eye test and I had to walk tunnels and tunnels wthout being able to see people's eyes. Svierta (sp), the nurse, so sweet offered me to hold her arm ... lol. When I got there, the Optetrician asks me to read the letters on the wall ... hahahha ... Suuure. Anyway. Checked. Have already a plan for all the staff to forget I use contacts so I can sneak them into Isolation. Nobody tells please !!

After that first blow, nothing can be worse really. The plane ride was fine. Food was delicious not. But their bread !! Oh boy, if you ever fly KLM please ask for two buns at least !! Fresh and crunchy ... Mmm. Quick stop in Amsterdam. I loved the fact they sell fresh tulips at the airport. I'm craving flowers after our long Canadian winter. I was waiting to board the plane to Moscow and there was a
mother with a screaming little boy. And I mean screaming, tantruming (is that a word ?) on the floor
and I became one of the others. Yes, the others, that whenever I've travelled with my children, think Oh God, not beside me please. At least mine are mostly happy to go anywhere. Anyway, I found myself hoping to be seated faraway from them. And I was. As a matter of fact, the poor boy must have been exhausted cause I didn't hear him at all.

Three hours later I made it to Moscow. Had booked the wheelchair service .. yes, I could have walked it. But I was told doing it that way nobody asks you questions and it's fast. So I did. No shame in that. The man that was pushing my chair took no prisoners and rushed me in front of everyone for the customs line (yes, I did feel a bit bad about this, but what the heck!). The lady barely looked at my face to confirm it matched my passport's. Off we went to get the bag. And off to find my driver waiting with a big smile, Alexei.

I was thinking I would see mainly Ladas on the road, such is the poor knowledge I had from Moscow. Did not see one. Lots of cars, they drive agressively, but this is a big city and that's how you have to drive. Made it to the Hotel, met my brother that was waiting for me. He gave me a bag with goodies from Chile and I realized my favourite chocolate with almonds wasn't there. The, at least 10 bars of
chocolate I was counting with,  weren't there !! Lucky he's my brother. We went out to dinner to an Italian restaurant that night. We got into  the restaurant and a KGB type looking guy is requesting something in Russian from us. We looked at each other ... oh, ok, he wants our jackets and he gets lost in a room, and took the longest time. This might be it, I think, never made it to the Hospital. They are making  us dissapear already ... hahaha.  Food was great, could have had a second serving  (maybe I should have thinking in retrospective).

The next day we toured through a nearby market and gor some souvenirs. Laughed when I saw most of them sell t-shirts or mugs with a bare chested President (for some reason I don't want to write his name, pUtIn ... You know).













Then it was off to the Hospital. Got to meet Anastasia, Dr. Fedorenko's lovely assistant. Met the Doctor in person when I got to my floor. Big smile, to which I quickly got used to and I see every
morning when  he comes to say hi. Vey impressed with the staff. Full of smiles, even though most nurses don't speak the language, we understand each other. They are lovely. You can breath good spirit. I got to meet the other two patients that will go through the treatment at the same time than me. And I find there's an instant bond between us. I feel very blessed.

The next two days started early. Had a total of 10 tests the first day. Including x-rays, several sonograms (heart, stomach, legs, etc), MRI, eye test, swabs everywhere, blood tests, etc.  All very thorough. Then I had my meeting with Dr. F. when he officially told me I could start treatment if I agreed ... duh !! Of course, yes, please !!

Afternoon off.

So we went on a tour through downtown Moscow with my brother and Steve (fellow patient). What can I say, even the subway stations are massive. Beautiful, enormous, sense of greatness (too much maybe ?). I may sound a bit envious of such history. The buildings are massive ! The Red Square is MASSIVE !! The Kremlin, Saint Basil's Cathedral ... WOW !! Everything beautifully restored. We took a tour bus that drove us through the main areas and buildings and I was trying to close my mouth because I was in awe.

We got back after 8 pm  that night. I was exhausted. My legs hurt, but it was all worth it.

The next day, yesterday, I officially started the treatment.

And I'm hopeful. How can you not, when you're told you have a 100% chance of halting your MS. I repeat, he gave me a 100%. I'm just going to be happy with a 90%. I'm Chilean .. Nothing can be that good ... lol.

Can't believe a week has passed already, days are flying by. One week into Russia. I've met beautiful people, a doctor that wants to heal you, Anastasia that is always giving you a smile and always helpful. Fellow patients that I know will always have a special place in my heart.  Staff that are there for you. Even the food isn't that bad anymore. Now I get why former patients get so obsessed with the food, there's not much else. I carry a food log of what we get every day. And I rank it. After a week I find myself looking forward to porridge every morning ... hahahaa. I'm serious, I'm cleaning those plates so well  they won't even need to wash them.

Take care everyone, and eat your morning porridge !!

:)

Start your engines ...

The day has come !!

In a few hours I'll be boarding the plane that will take me to Amsterdam first, then to Moscow.

I'm excited. I'm terrified. I'm confident. I am full of doubts. I'm happy and I'm sad. So many more feelings going through my head right now. But I do know I'm making the right decision, I'm taking a leap of faith trying to take matter into my own hands and doing the best I can to get better. Of this I'm sure.

Unlike the last post .. this won't be an 'Oscar speech' thanking everyone. I did forget to mention though .. lol .. all the past and present patients at Pirogov and other facilities that perform HSCT. A big thank you to each one of them. Thank you for all the answers, words of encouragement, advice of what or what not to bring. Thank you for being an inspiration. I remember each one of you. You all know who you are. It's my turn now and it warms my heart knowing all of you are also joining me in my journey. 

I have a few more bits to get around today before I leave home. Simple things and not so simple ones. I need to say goodbye to my children, and that will brake my heart. But it's all for a good cause and I'll be back. Bald and tired but I'll be standing proud.

My brother is already in Moscow waiting for me. And that is reassuring.

I'll be posting quick updates on my page on Facebook if you feel the need to follow it. Go to 'Flip the Bird in Russia' and like it. 

Here are my main reasons to go through HSCT ...

I don't have anything else for you right now. 

Peace

:)

A year ago ...

A year later I find myself reflecting. So much has happened since March 2014.

Last year in March, I found myself and my family in DisneyWorld. Enjoying a much needed roadtrip, warm beaches, and the excitement to see Disney again through the eyes of my children. At the same time, while surfing the web on those nights at the hotel, I remember finding out about HSCT. Hematopoietic Stem Cell Treatment ... were the magic words. I think I made my mind about following this path, right there, right then. But you can't make those decisions while on a busy vacation. I needed time to read the vast amount of information about it.

So I just prayed my legs would take the trip, the everlasting walk through the parks, waiting in line for the rides .. oh how I welcomed when my then 3 year old would fall asleep and I just had to wait for the others .. lol. We made it, I made it. They all loved it and dreaded the long drive back. More importantly, the car also made it. Good memories.

Anyway .. after being denied to get the treatment in Ottawa, Canada. Their reasons being 'you're too well for this'. I kept looking and decided to apply to go to Moscow. Where in a couple of days Dr. Fedorenko, personally, wrote me an email back, saying he would be delighted to help me. I was accepted. I'm going to Russia.

If you are Chilean like me, we're always prepared to hear the worse news. That something, for some reason or another, isn't going to work. Whatever that 'it' is. Another earthquake, another volcano just erupted, our newly elected President keeps screwing it up, now through her son, our pollution is really bad, we need rain to clean the air, etc. There's always something. So, this whole year, I kept waiting for something to happen. Something isn't going to work, my trip to Russia isn't going to happen. It looks too promising, it can't just happen, can it ?

Volcan Villarrica, picture taken from Pucon. March, 2015

Well ... nothing has happened to stop my trip. The opposite. Things have happened that have gotten me closer to Russia. Small things and big ones. 

I have the support of my immediate family. My husband and children are excited, and have supported me each day. They are dreading the goodbye, just like I am, but we're trying to focus on my return. One of my girls has big plans for me when I get better. She thinks Mama will be able to go skating with her, or down our trail to the river. I say, don't ever dream small my dear .. you never know. Bless her. 

I also have the complete support of family and friends down in Chile. My Dad, my brothers, my dear cousin and close friends. I've even been contacted by old friends that have become closer and main supporters too. Amazing how the internet can help to bring us all closer. Thank you for sharing my journey.

In Canada, I have to thank first of all my mother and father-in-law. Without their financial help, I wouldn't be able to go to Russia. They've also taught me to be patient, when I have to explain what HSCT is about ... every time they call .. hehee. Jokes aside, they are great and they've made this dream possible. To my husband's brothers and their families, thank you, from the bottom of my heart. Thank you for all the work you've been doing behind the cameras even though you're also going through your own things. To my husband's sisters, thank you for contacting my children's school and making 'MS wear red Day' happen. Much appreciated. And thank you for the book about 'happy tears' .. I will be bringing it to read while in Moscow.

Tim, Sheila & Brooke while on vacation in Barbados.

I have to thank also many others that have helped. My friend Lisa who keeps my brain working with translations for her Greenhouse. My neighbour Julie for her initiative to organize a hot chocolate sale while on Christmas season. To all my other lovely neighbours that came to a party a couple of weeks ago. Your support and love is very much appreciated. Some of my husbands co-workers and friends have shown support too, to which I'm really thankful. To my family doctor, Dr. S. Thanks for your well wishes, your interest and your support. It means the world to me. To the Rotary Club in Bowmanville, Thank you !!

I feel the love !!

I also have to give a shout out to Petunia Face. Lovely, funny and hilarious lady which kept me busy reading her very accomplished blog through the month of February. When I started reading it I had no idea we would end up having the same HSCT journey. I laughed out loud, cried and enjoyed all the pictures. I wish you the best in your journey and I'm still star struck when I read your comment on my blog today .. lol. Now I have to get used to having to wait for her to publish a new entry on her blog, but I'm getting better at it.

This week I will focus on enjoying my family, my children, cuddles, their hugs and kisses. Get my last very important provisions for the trip (m&m's, granola bars, instant coffee, adult diapers .. hahaha) and preparing for the journey that will change my life. I cannot wait. 

Take care !!

9 more days to step into that plane ...

:)

Lo and behold, it's March !!! ...

I've been waiting for a year exactly to go for HSCT in Moscow. A year has helped me reassure what I thought from the beginning, that this is the route to go. I've learnt more about what will happen, how I might feel, what things I should bring with me, etc. One thing has been steady, and it's the trust that all of us undergoing this treatment have in Dr. Fedorenko and his team. I don't know him yet, but I doubt every single patient that has met him is wrong. 

I had a dream last night. I dreamed I was admitted to Pirogov Hospital in Moscow. They assigned me a mattress on the floor in the main hall. I had to kill a few spiders at night, and I was backing into a Chinese restaurant, and I mean literally backing to it. There were no walls, I could smell the food and watch the people eating. Other than that it was a good night. I also had a yellow full size fridge that for some reason had lots of icing cakes in it. I forgot to travel with my bag, and didn't have any of my clothes. I was most upset because I also forgot to bring my ipad .. how will I be able to talk to my children and husband ? The other patients seemed nice but I wasn't wearing any shoes. 

I should have woken up wondering about this. But I didn't. I just find it funny. It's my mind playing games. It always happens before I started school, a new job, go on a trip. It kind of made me chuckle. Really !! What are the odds I'll be sleeping on the floor ... right ? 

Anyway. Saw my family doctor this morning. Last time I see him before my trip. He confirmed his 100% support. He'll prescribe whatever Dr. Fedorenko orders after treatment. He asked me if I've done any swimming as he prescribed when he last saw me in December. I lied and told him only a couple of times ... shhh, don't tell him. He grinned and said he knew I have a lot of things going on right now. He'll bug me later. Thank you !! I promise I'll swim .. heck, I'll jog if I'm able to. Play hide and seek ? would that help ?

So all things are lining up. I've been spoiled with friends and neighbors generosity and love. My Russia bag is filling up nicely with things to pack. Schedules for family activities are updated, spreadsheet with HSCT schedule (thanks Mindy) printed, instructions to use washer and drier prepared. Hoping Putin doesn't screw it up too badly for the next couple of months so I can go and return home peacefully. 

Moscow, here I come !!

22 more days ...

Sleepovers before Moscow ...

My husband works away for about 3-4 weeks and then returns home for 10 days. When he's away, the children like to have sleepovers with me. So they take turns. Lately though, I'm the one looking forward to each sleepover. They don't know it. I love it. I love looking at their sleeping faces, at their innocence, one of them likes to talk in her sleep so that's a whole different entertainment. I play with their hair, I kiss them, and cuddle them. I'm treasuring each sleepover cause God knows I'll miss them when I'm in Moscow. I will miss them, but I'll have them back again. It will all be worth it. I love that quiet time I get to enjoy each one of them. Having four children, I don't get many of those times during the day. So I'm treasuring them. I'm treasuring the little one singing around the house for no reason. Wearing sunglasses, her bikini and winter boots, while dancing and singing in the mic. Don't you just love the innocence of children ? I'm treasuring each moment.

I was talking with a journalist of a local paper. Here goes another effort to help my crowdfunding site. We'll see what happens there. He asked me why do I think HSCT would be news for them to publish. I told them I wish I had heard it from someone local, or in the paper, or somewhere else that gave me any hopes for my MS. In the end he says 'Happy Birthday' .. 'excuse me ?' I say ... 'Have a good day' ... 'oh !! lol, you too' .. hahhahaaa. I'll blame that one on the phone line. That same night a photographer came to take pictures of us. Apparently we're going on the paper .. sometime in February. The children are very excited, they think they'll be famous. 

My sister-in-law emailed the Principal at my children's school about doing a fundraiser. It was denied, but she agreed to ask the students to wear orange in support of MS, March 12th. That's nice, I guess. More kudos to Amy for setting this up. Thank you !! Don't know why orange .. isn't red MS's color ? Anyway ... any color is good I guess. Should I try to squeeze in my Flip wristbands in school that day ? Darn .. I'm loosing market with the 'Flip the {bird}' idea .. never crossed my mind it wasn't really appropriate for little children. Hey .. maybe the High School ? hahhaaaa. 

Anyway .. I have a few more names in the media which I'll keep trying to contact this week. You never know.

Also bought some mint gum (for the days in ISO when I won't be able to brush my teeth), two tubes of moisturizer (my skin will get very dry), face wipes .... (don't know why but I thought I might need them). All of these items have been added to my Russia Bag. Checked !!

On a side note I must share these pictures my husband took of his Flip bracelet while working in Newfoundland these past few weeks (east of Canada). I love him to pieces. Even though he criticizes my grammar sometimes. I'll be forever grateful for his support and love. Here's the pics.

How cute are these pictures ? I just love the idea that he took the time to think about the journey I'm about to embark and wore the bracelet (even though he complains it's too tight for him .. lol) and took pictures on the different things he has to do. Thank you !!

I would like to remind people that I opened a Tilt account to try to get extra funds. Tilt is a crowd funding site. Canadian dollar hasn't done very well lately and the treatment is getting more expensive for us. I also have to think of my return and that I'll need physio after 8 weeks. Everything adds up and any bit helps. I want to publicly thank to my first supporter Sarah. Thank you for start the ball going. And to two newly met neighbors that have also shown me support. Muah !! I thank you all in advance.

https://www.tilt.com/campaigns/flip-the-bird-to-ms-in-russia

Also, to all Facebook users, I opened a page which you might want to visit. I'll be able to share quick updates and pictures/videos, while I'm in Moscow. Please go to it, give it a like and join me in my journey.

https://www.facebook.com/flipthebirdtoMS

I think that's all for now. Wow ... we are almost into March. All the best to the current patients at Pirogov in Moscow. I've heard of some vodka parties going around. Lol.

28 days ...

:)

Happy Valentine's ...

So this week I realized it was my last time to drop one of my little ones at Nursery School for Valentine's Day. It was my last time helping her address little cards for her friends. It was my last time seeing her holding that bag before entering the classroom like it contained a hidden treasure. Such innocence in her eyes. Expectation. Giggles. It just hit me. I kind of gave up in the middle. I didn't send anything with my 6 year old to school .. it might be a boy thing. He didn't really care or asked to bring anything. The older girls ask to bring stuff. So I got them something. The oldest one is the 'cool' one. You just don't bring Valentine's to everyone, she doesn't like everyone .. lol. So she's happy to make her own stuff for close friends and teachers. I wonder when I gave up. Did I give up on this ? Maybe having a 4 year old, going through all this for the first time will bring it back. It just opened my eyes, to her wonder in life. I needed it. I know there's next year .. she'll be in JK (or first year of Kindergarten) and her excitement will be the same. She'll be able to write her name even better. And maybe I will be allowed to send lollipops or treats to the school (too many allergies at Nursery school). 

See ? I'll explain. Where I grew up, all the way down in South America, Valentine's is the 'Day of Love'. Only reserved for teenager or older couples that are in a relationship. You go on a romantic date. Red roses, chocolate hearts and giggly cards from Hallmark (Village was the case in my teenage years). It's a day in February, where you're in summer holidays, hot and sticky. You don't have classmates to bring anything to. You are actually dreading March coming so soon, cause that's when school starts. So it was always far from my thoughts. So I've learnt through my children to enjoy these things that for me had not much meaning before.

I finally got out the good gloves today. Needed them badly to walk my children to the bus today. Funny I remembered about them only mid-February. I guess that's good. It means it hasn't been so frigid before. Glad to report they are awesome !! So one more item checked off the list to Russia. Gloves/mitts .. checked !! I'm also proud of myself for not needing to wear socks so far !! wohooo .. lol. Nothing better and easier that slipping into your winter boots with nothing to create traction. Love it. It does get a bit tricky when I had to drop little one at Nursery School. You cannot enter with your boots and get all the floors dirty. So after suffering for a couple of weeks wearing socks I hate, having to sit down, take boots off. Walk all funny with socks on, not wanting to slip, cause how embarrassing that would be. Go up the stairs, come down again, sit down. Try to fit those boots on, too tight .. ugh. Now I just bring slippers, problem solved. Ahh, so happy. It's all in the little things people. 

I didn't get many responses on what to do with my hair. Only two people told me to go for it and look gorgeous for the last few weeks. And reminded me I will save money on this for the rest of the year, to what I say : good point !! I just read another suggestion of coloring it my children's favorite colors .. nah, that's not gonna happen. Cause I'd look like a rainbow. May as well buy a clown wig. Hey ... there's an idea !! So I'm guessing nobody gives a shit. I'll do whatever I think then. 

My brother in law sent me an email this week, saying it might be a good idea to open an account in a crowd founding website, and sent me a link. I honestly had forgotten about this. I looked into doing this a few months ago, but as you all might know by now, I really suck at fundraising for myself. I found some disadvantages to crowd funding and finally decided it wasn't for me. Mainly because it means people will try to help me. I have a problem with that, it's always been difficult for me to ask for help. But times are desperate. So .. he reminded me of this idea. And I looked into it. And I still suck at it. But after having a phone conversation with my husband. Where he told me about the poor exchange rate we have right now to the US Dollar. Every cent Canadian dollar goes down it's really U$500 more we're paying for your treatment ... bla bla blah.  It really sucked. I know, I get it, I understand ... and I hear you. Wish I could help more .. ideas come to my head, but they don't apply in a small town in Canada. Not that it would work in a big city either. Nobody would stop if I stand in the corner of our court .. it's frigid cold anyway. There's also the 2 feet of snow which would make the logistics difficult. 'There's the lady with the cane again', the odd driver that passes would say .. lol. And the children would be playing in the snow around me cause they go everywhere with me ... mhh ... not a good idea. But you have opened my eyes, I feel empowered. I will do this. 

I will also contact again all the local media, tv channels and maybe now that the deadline is so close, something, someone will care, listen, and help. Any ideas are welcome.

Wish me the best people. 

For anyone that wants to help and/or share my cause, here's the link to the crowd funding site : 

https://www.tilt.com/campaigns/flip-the-bird-to-ms-in-russia/description

And to everyone I wish you a Happy Valentine's. Enjoy it with the ones you love. I know I have mine right here with me.

Food for thought ...

Ok ... so people DO read my posts .. lol.
Thank you !!

Amazing how life goes on, we are in the middle of February, almost, and winter is totally blasting here in Ontario. Last week I had to shovel the snow in the entrance of my house 7 times (counting this morning). No small feat. Now, I do get the easy part. My wonderful neighbors are the ones that do our landing strip. Sorry, our driveway. Have I said I have great neighbors ? I do. One of them was working his way through the snow last weekend and we (me and the children witnessing this heroic act through the window) couldn't figure out who that kind soul was. Is it our neighbor on the left ? Nahhh, it doesn't look like him (he always wears a very light jacket, unmoved by our cold winter). Is it Uncle Tim ? naahhh ... he uses the four wheeler that belongs to my in-laws (therefore not the latest model), this one is a brand new yellow one. It has to be our neighbor on the right. He's the only one that would face the world wearing a hilarious viking hat, yellow long and bushy beard included. It can only be him. Thanks again Rob !! and Al, and Kerri !! Awesome neighbors. 

Another thing in my personal news this week was that Target announced they will close their doors in Canada. What a bummer. They've been in Canada for only two years. I don't have any studies in business, but it blows my mind to think that someone thought it was a good idea for Target to start their business in Canada with over 200 full working stores. Let's start small people !! Talk to me next time and I can give you advice. Yes, it wasn't the cheapest place to do grocery shopping .. but who in their right mind would do grocery shopping there. And yes ... I guess the prices weren't as good as they are in the States. But the quality of the stuff was great. Loved buying clothes there for my children. And sometimes for myself. Loved the quality of towels and decor. I will miss it. But the best part is that they had a Starbucks. That hurts. It hurts cause now to get a good latte fix, I'll have to drive to the next mall (20 minutes away). Oh well, I know I will survive. On my efforts to get over this slowly, I go to Target and they had already closed the coffee shop. Ughhh ... I felt empty. At least I can fondly remember that the last coffee I got there was for free. You know .. cause at this age it's fun just to start a conversation for no reason. I was the next in line and see a guy (kind of in charge of the store looking guy) was teaching a young girl how to serve the perfect latte. So I start a small talk. And it seems they were offering a new brew of coffee. Want to try it ? he asks, sure !! So after a few minutes with the freshly poured latte on my hand I kind of ask ...'hellooo ... I'd like to pay please ?' 'Oh no' he answers. 'I took care of it'. Whaaat ? So nice. Thank you guy at Starbucks. The best was yet to come. I come back home, showing off to my children that a handsome guy made me this coffee for free (of course I'm going to embellish this a bit for them) and my youngest one asks 'awww, was he weird Mama?' ... ok so only weirdos give Mama a free coffee ? 'No, my dear, he was very normal, smart, well spoken and kind person'. Ha !

Anyway ... we are again getting closer to the weekend. Which is always busy in this household with sports activities. Weather man said last night we're getting another cold spell .. great !! I've been religiously checking the temperatures in my hometown and in Moscow .. always colder here. So I'll win that battle for sure.

I was looking in the mirror this morning ... my gray is starting to show again ... to do or not to do the roots again. Food for thought .. is it worth it to look awesome for a month when it all will come off next month ? What do you think .. how about I put this matter to people's vote.

39 more days ...

Coming clean ...

I go for my treatment at the end of March. And as a friend used to say ... we're in February already so this month doesn't count. Then it will be March ... so that doesn't count either ... lol. Amazing how time flies. 

I've been working on my little milestones. Last week I finished decorating my master bedroom. And it puts a smile on my face every morning when I see how great it looks. How crisps the walls look now with the white trims. It's all about the little things people !! My life is full of little things that make me happy. Of simple things I try to accomplish. I try to show my children that too. The other day I was changing all of the bed sheets and as I was getting the old sets off the beds I'd throw them on the stairs. After changing 4 single beds and my king size bed, the mountain of sheets was pretty high. What is my surprise when I'm ready to come down the stairs ? ... they had build a tent all along the staircase ! I laughed out loud !! And loved it at the same time ... I wished I had taken a picture of it to show it to my husband. The little things that make them happy. Of course they made big plans ... bring colouring books, flashlights, could they spend the night there too ? 

I got a check in the mail. A very generous check. Thank you Rotary Club !! It will be put to good use .. especially now that our Loonie keeps dropping. For non-canadians, Loonie stands for Canadian Dollar. It's not doing great right now, but according to me, it can't do worse .. so maybe in a month it will climb up a bit. Oops .. got distracted by the economy. Thanks to David from the Rotary Club again. Very nice man, called me a few weeks ago. Said the Club had learnt about my story and they wanted to help. Funny how things happen. In November I worked for the Elections (figured I'd contribute to this household bills with the $200 I get for working that day) and met this lovely man. The friend that was sitting next to me, also working there (I know, I'm lucky - what are the odds, right ?) happens to know pretty much everyone. So she knew this man that was working two tables away from me. At the end of the day, she tells him my story, briefly. He gives me a card and tells me to send my info and a brief story of the treatment by email. And I did. I heard back from him in December. He sent it to the person in charge. In January I get this call, talk on the phone to David, he said a check would be on the mail the week after. He asks me if I'd be able to talk to the members after the treatment, when I feel better. Of course !! And just when I was starting to wonder about it, I get the check. Wow. Big surprise. Big surprise indeed !!

I don't want to forget to upload my latest picture of Flip Wristbands.

Marianne, Norway

Thank you Marianne for your lovely message. It's still very comforting to suddenly receive these emails from people I don't know and say they'd love a bracelet. This one is all the way in Norway. Thank you to all that have helped me so far. I guess it's time to remind anyone that is reading this blog and wants to sport one of these, to contact me by email and give me your address. All I ask for is the cost of the shipping. I have to thank all the generous souls that give me way more that I intended to receive, you know who you are. It's all there waiting until I go to Russia.

Now I have to come clean. I don't really know if anyone follows this blog. I still can't find if I have actual followers ... maybe I'm just talking to myself .. oh well ... in case there's people that religiously read my posts, I have to tell you I've been cheating on you. Last week, one of my friends in the MS/HSCT community posted someone's blog. And I'm hooked. My only complaint is that she writes very well, which can be a problem if you get easily addicted to good writing. And, she's been blogging since 2008 !! If you're like me, a Virgo, I couldn't just read her last post .. nope ... I had to start reading from the beginning. And it's been a blast. My reading stents are only stopped by my children's/households demands, or when my ipad's battery goes. Reading that blog has made me realize that even though I'm not an accomplished writer (my English vocabulary is not so awesome), I do have something to say. If my point of view in life can help one more person going through MS, I've done my job. So thank you Petunia Face !! I'm thoroughly enjoying reading about your journey.

Lastly, I must remember the four little reasons that keep me focused. 

These are my four loving, cuddly cheerleaders. Plus my husband, parents, family, extended family, friends and lovely neighbors. 

46 more days ...

:)

Bye Bye Tecfidera !!

Yes, another milestone done with !!

Yesterday I had my final dose of Tecfidera. A newer drug recommended by my Neurologist to delay the progression. I started taking it in December 2013. So after a year has gone I feel I can evaluate it. I had the common side effects, intense blushing, more common at the beginning. My face would just turn red and feel very hot for about 20-30 minutes. In the summer at least I could mask the symptoms with just feeling hot with the weather ... in the winter, not so much. Lol. I guess if I'm optimistic, I would say I didn't really have any relapses. No new MS symptoms which I appreciate. But also if I look on how I was a year ago, I feel my balance has slowly deteriorated, so has my walking. It's getting harder to go up the stairs and some falls that could have been serious have been luckily stopped through 'furniture/wall surfing' in the house. So, all in all ... not such a bad year. Thank you Tecfidera ... but now I officially FLIP it to you too ..  off to the garbage you go !!

I have no fears to be off it. My body needs to be clean and be free of any of this for HSCT. 

On a different front, another of my milestones has gone too. My littlest one turned 4. Big girl. No more babies in this house, just like that. It feels great but it's also a bit sad. Where does time go. I wish her first memories were of a Mom that can do everything with her. But she's grown accepting her Mom uses a cane, can't run or play catch. She's also learned that it's a great help to go get things for me upstairs, and she does it willingly, still .. lol. I can't teach her how to skate or run on the grass with her, but I can still tickle the hell out of her though .. hahhaa.

My 'bag to Moscow' has filled up slowly too. Found some instant noodle soup on sale. Santa brought me the adapter I'll need for my ipad and some slippers. Checked, checked and checked !! We're down to the basics now.

62 days ...

:)

Happy New Year everyone !!

Yes, Happy New Year everyone !!

This is my year !! I'm determined it will be a successful one. Full of adventures, chemo, baldness, less trips to the hairdresser (lol Julie), ups and downs, not a lot of sun (it seems I'll have to cover myself a bit), lots of happy tears, lots of hugs saying see you later, then more when meeting fellow HSCTers from all over the place, some more when I have to say good bye, and then the sweet ones when I come back home. There will be more, I've just been told I'll have my Dad and Stepmom visit me soon after I come back from Moscow. It will be their first time visiting me home in Canada. Even sweeter and I'm sure there will be more hugs there. I know there will be a lot of cyber hugs too. I feel support and good wishes are coming from everywhere. Such a good feeling.

This year started bright already. I can only imagine what's to come. 

I tend to be in the positive side of things, and that's how I want to remain. 

Finally got all the Christmas stuff put away, house looks like a house again. Can't wait until next November, when I have new energy to put up everything again. Who knows .. maybe I'll even feel like decorating the stair railings again, or put up all those extra little Christmas trees. This was not the year for any of that .. lol. I'm focused on not wasting my energy. Efficiency comes first.

For now I still need to go through some milestones here at home to start getting ready for my trip. Today is my 4 year old's birthday. Then in February it's my eldest's one. Then, the countdown for Russia is official.

I found out there's a sweet lady that will start treatment at the same time I will. Exciting. 

Weather is cold too. I feel I'm training for temperatures in Moscow. Yesterday it was colder here than over there. A balmy -20. Nice. With that I'm also really hoping the end of March won't be this cold. I'm not expecting flowers or grass .. but if I can at least not travel with my winter jacket and boots I'm good. Yes people ... I'm packing my suitcase in my mind. Lol.

73 more days ...

So this is a short one. But I want to wish you all a great year. May it be full of blessings, laughter, happiness and new beginnings.

:)