Monday, January 18, 2016

+9 Months Update ... Good-bye Supercane !! Even if it's for a couple of weeks.

Low and behold, it's been 9 months already since HSCT !!

In the past three months I've experienced some sort of bone/joint pain in my right leg (the good leg !!). I've come to realize that if I take an Advil in the morning, the pain is in the back of my mind and I can continue with my life. So I do, when I remember.

My energy levels are still up. I managed to put Christmas stuff away in our basement. Don't get visions that it was swift and quick. It was slow but efficient. After the tenth trip down the stairs (backwards - don't get the wrong idea, I still don't brave the odds to go down a set of stairs with boxes on my hand facing forward) I was almost done. Big accomplishment.

I say big, because I did it on my own. I usually rely on my dear husband to do all the box lifting and outdoor stuff. But he broke his tibia in December. Had to have surgery and he's still recovering. The only way he can walk is with his crutches. This made me realize I had to step it up a little. Now I am in charge of taking care of him. So I had to make Christmas magic happen on Christmas Eve. Then put everything away. The one day that we got a big dump of snow, I was the one shoveling it outside with the children. I also got to go out and watch them having fun on the sleds. It hasn't all been red roses. I've cursed a little under my breath. But things are getting done.

The big news that happened almost two weeks ago is that I made a conscious effort of leaving my cane home when I went out a couple of times. And I was ok. I'm so used to use a cane, been doing it for about 3 years now. Maybe I've been ready for this for a while, but every time I go out the door, it's an automatic action. I grab the cane. This time I made a point of looking at it, and think, 'no way Supercane, you're staying here today'. And I didn't fall, no one looked at me funny, I have two hands again .. and it feels Awesome !!

Best reward ever. We went get pizza with my two girls one night, and one of them holds my right hand while walking to the store. Then she freezes. Stops. Looks at me in awe !! Your cane !! You don't have your cane !! If I could have taken a picture of her face. Stunned. Happy. Delight. 'Mummy doesn't need a cane anymore !!'. 

So happy.

As you all may know, I live in Canada. It's winter. And we finally got snow, a lot of it. I did ponder when we got the first snow storm. I went out that morning, take the children to their school bus, and see a beautiful white driveway. Long, loong driveway to walk to the bus stop. And I looked at the cane ... should I ? Am I going to be safe ? There's snow, it's a good excuse to use it ... Nope. NO, No, no. No cane. I came back still on my two feet. Upright. Excellent.

Now, these years with MS have taught me well though. As a regular MSer, I'm almost expecting this is a fluke. I'm just having a good couple of weks kind of thing. This can't really last. But you know what ? I'll take it. It feels great. 

A year ago, at this time, I was planning my trip to Russia. Writing my lists, so I wouldn't forget anything. Trying not to think I was leaving my family to go for a treatment I was hoping would work. At that point, all I wanted was that HSCT would stop my progression. My secret hope was to stop it and improve my walking a little bit. But if you had told me in 9 months I'd stop using my cane. For a day, for a week, who knows for how long, I would have laughed. Not possible. I have MS. One doesn't get better from MS !!

But here you have me. 

It's still not a pretty walk, lots of room for improvement. Some people might think I've had too much to drink when I walk. Lol .. but again, I don't care. To me this is a big step, be able to walk unassisted. And I'm enjoying it.

Have a brilliant day everyone !!


Friday, October 9, 2015

+ 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.


Sunday, April 19, 2015

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.


Sunday, April 12, 2015

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.


Sunday, April 5, 2015

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 !!


Sunday, March 29, 2015

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 !!


Sunday, March 22, 2015

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.