It was nice to talk to my dear brother on the phone the other day. He will join me in this medical adventure to Moscow. We'll meet there in March. He will go all the way from Chile and I'll go all the way from Canada. It will be great. I was saying it was a nice talk because I briefly walked him into what HSCT treatment is about. It served me as to check if I know all the steps. Believe me, there's many. Fellow HSCTsers know. Now, I'm really bad at remembering all the technical stuff. T-Cells, white cells or red cells. This is why I appreciate other members posting all these details which I'm sure I'll get to when the time comes ... to me this treatment basically kills the cells that produce your MS or whatever Autoimmune Disease you have. I only need to know that and remember the basics.
So to any of you that are interested in what is HSCT, in a very basic way, here is what happens right after you get to the Hospital.
1) You meet Dr. Fedorenko.
2) Pay for the testing that is coming in the next four days (about U$1,000).
3) 4 days of testing. To make sure your body will take the toll.
4) Dr. F gives you the ok to continue with the treatment and I pay the remaining U$39,000.
5) 4 days of stimulation injections (at 11pm and 3am). They stimulate your stem cells from the bonemarrow to your blood stream. This way they can be collected through your blood later.
6) 1 or 2 days of stem cells collection. They need to get up to 2 million of them.
.... this is the time when my brother should be departing ..good .. I'll spare him the really ugly part .. lol .. should he give me the official mohawk shave ? opinions ?
7) 4 days of chemotherapy ... this is what kills the bad cells.
8) 1 day of rest ... I figure I'll need this by then.
9) 1 day for transplant ... my good stem cells are going back in !!
10) Up to 10 days of Isolation to give the time to your body to get its numbers right (first down and then they need to go up). Remember, your immune system will be like a newborn baby.
11) Spend remaining days in Hospital, out of Isolation getting ready to leave. They also give you a dose of steroids so you can fly home like Superman, or Superwoman. May these effects last !!
All this should take around 30 days.
I'd like to fit in the first few days some site seeing with my brother, my Bro. We are in Moscow after all. So hopefully I'll be able to fit some of this during this time. Need to get some Russian dolls for my children .. someone suggested to get them before hand on Ebay .. lol .. my extremely want-to-be organized self says yess !! ... but then my other self convinces me that they wouldn't mean the same ... me buying them there, about to have a treatment that will change my life, hopefully. That time of the year might be my favourite too. Spring. New blooms will be in the air ... it's going to be dead cold for him though .. hahhaa. And I'm sure we'll get to meet wonderful people too. I tried to explain that to him on the phone ... but I'm sure he kept wondering 'why would they care'. Well, I'm sure all the carers, spouses, parents or friends that take a month off their lives to go and accompany a patient doing HSCT, do care. I told him about the crazy Australians .. lol, haven't said anything about their vegemite ... let's leave that until the time comes. I've also told him we are all like a big family, but I understand that. Uless you are in my shoes, it might be hard to get.
So that's the basics of the treatment. My main goal in going to Russia is to get HSCT and finally Flip the {bird} to my MS. If I can squeeze some site seeing with my Bro, even better. If not, there's always the future to go back to Russia and explore. Dance the limbo on my way to Red Square.
The return home is a bit more uncertain. I guess it depends on your level of disability. I've tried not to think about this too much and mainly wing it .. as I do with many other things. I know I need to keep away from crowds for the first while ... or sick people/children (cough cough ... stay away from Mama four children of mine) .. do not get close to any animals (I guess visiting my inlaws farm with cows is out of the question) .. clean every surface I touch and wash/sterilize hands whenever possible. Some people go back home and need to rest for a couple of weeks straight .. some others seem more mobile ... it seems you can start exercizing with a Physio after 2 months. Other than that I'm sure I'll adapt. Not even thinking about the routines in this house ... Will I be able to do the weekly grocery shopping ? ... cooking ? ... will I be able to do the laundry or will that be too much too ? Drive my little one to Nursery School twice a week ? I will try to slow down on the children's extra curricular activities in the spring, so I don't have to go out so much ... other than that, I'll adapt, we all will. Life is about adapting is how I see it.
Lots of other things happening right now. Christmas decorations are in full swing. My husband finally made it home yesterday from Newfoundland. So the outdoor lights are being installed. The indoors is done, kindish .. I'm skipping some extra little Christmas trees that I had here and there last year, then I don't have to put them away .. lol. Call me lazy .. I just see it as practical at this point. Thank Goodness I left a Christmas village on the china cabinet last Christmas ... when I saw it again in March (yes, as you guessed, we don't use that room much) and thought .. nahhh .. December is close enough !! So now that's done too !! hahahaa. I finished my two oldest daughters stockings .. and they look beautiful. They are hanging on the fireplace. Started on my son's now ... and it's going quite fast, but won't rush it. I'm hoping to bring this work to Russia to stitch my way through them there ... I'll have so much free time. Maybe I'll try to sneak it into Isolation.
So that's about it. It looks like December is going to go fast. Very busy month, lots of school, sport and family functions. Short days and long nights. But I still love it. There's something about Christmas, about the lights, listening to my daughter play Silent Night on the piano. I miss all my loved ones down in Chile roasting themselves in summer's hot weather. But there is something so powerful in having a white, dark, cold Christmas.
My wristbands are going well. I need to pick it up though .. a bit more than 3 months to go and the box doesn't seem to be any lighter ... lol. Keep the pictures coming when they arrive. There's some ladies in the US spreading the 'Flip' and I really appreciate it. Again, if you want to get some just send me a few words to my email : xxiimmee@hotmail.com with the word 'wristband' or 'bracelets' on the reference. Let me know your address and how many you want. I only ask to cover the cost of mailing them. I do my best to try to flatten them up but I'm not convincing the Mail Office ladies. At this point they laugh when I get there. I guess at the beginning they thought I was trafficking something .. lol ... so I showed them the bracelets, told one of them my story and where I'm headed. I live in such small town that one of the ladies that works there is the sister of the former owner of the house we bought last year !! Small round world we live in.
Here's some more pictures ...
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| My God-daughter Fran, Chile |
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| Barb, Michigan (love the braccelet, ring and nails combo !!) |
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| Beth, Wisconsin |
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| Janet, Michigan |
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| Kisha and her boyfriend, Ohio |
Have a brilliant week everyone !!
:)
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