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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.

:)