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 ...