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 ...
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 ...
:)
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.
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 ...
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 ...
:)
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 ...
:)
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.
:)
