+ 10 Dancing in the Streets! Moscow, too!

Sept. 14, 2013 – +10

We have engraftment!!
Leuk 4.0, yes, the bottom of the range, but, in the range, and they will only keep going up tomorrow.

Russian's Dancing in the street for me.

Russian’s Dancing in the street for me.

Leuk. 4.0 Engraftment Baby

Leuk. 4.0 Engraftment Baby

I may be a little drunk on celebrating with the Chocolate Nutidrink he brought me, so pardon me for my continued celebration and libations. We get crazy over here in ISO.

Chocolate Nutridrink

Chocolate Nutridrink

What this means is my Stem Cells are finally making themselves right at home, and taking over the place. Re-booting my system. I’ll always have MS, but the hope is it will not longer have control over my body. It’ll live a sad dark existence, where it doesn’t show it’s ugly head. I may not be able to reverse all the damage that has been done, but I am sure as hell going to fight for what I might be able to get back. PT will start one month after I return. Walks in the neighborhood before that. Slow, baby steps, I will feel fatigue like no ones business, I’ve been told. But, that’s what naps are for and good home cooking.

I will have an Rituxmab infusion before I leave of, to kick any B cells that may be hanging around wanting to stir up trouble. It sounds like he will do this late next week, so they can monitor a few days before I get on the plane. I’ve been told this isn’t a cake walk, there are side effects, and it takes about 5 hours, but I’m ready, let’s put the icing on the cake and not leave any rouge B cells hiding out.

So, let’s go dancing in the streets!

+9 It’s a Beautiful Day!

Sept. 13, 2013 Day #9

Numbers continue to rise, Leuk 2.2, up from 0.66 yesterday!! We are moving to the closer to the normal range now, which is 4.0 – 10.0. They may rise above, 10.0 then settle back down, so they still closely monitor everything. All my other stats, are still very good. So, Liver, Kidneys, etc… have been handling the stress of the Chemo.

UP to 2.2 today

UP to 2.2 today

On the hair loss, front I just took a shower and left more in there than on my head. I’m sure after they get my numbers up enough and I’m out of ISO they will give me another shave to even it out. I am looking rather refugee right now, but not complaining, it’ll will grow back.

Hair loss, 9.13.13

Hair loss, 9.13.13

Yes, I’ve lost weight, it’s pretty obvious. I do plan on gaining some of it back with healthy home cooked meals once I return. But, I’m sticking with my natural diet that I implemented when I found out I was sick. No processed foods, lots of fruit and Veggie, grass fed or organic meat (when Possible). I am even going to continue gluten free, as much as possible, it just makes me feel good. I will eat cheese and eggs again, thank goodness, I’ve really missed those. I’ve learned a lot and I don’t plan on taking this gift and not feeding my body what it needs. Yes, I will allow a cheat now in then, (I have a snicker’s bar in the fridge with my name on it waiting for me to celebrate when I get out of ISO) but for the most part I want to keep up healthy lifestyle and grow from it. Then when I add PT, I know I’ll be growing good strong muscles.
When I return their will be foods I must avoid, like soft cheeses, anything not pasteurized, sushi, undercooked anything, and the list will go on. But, I’m ready.
VW
It’s A Beautiful Day!

+ 8 Holding nothing back!

Sept. 12, 2013 #8

So, the numbers are rising still… Great news! Leuk 0.66, that’s up from yesterday’s high of .16, so some engrafting has been a happin’ here. Dr. F was very pleased and said that I should start to transition out of total ISO by Saturday! That would mean my clothes back. As much as the gown is so beautiful and all, I am ready for some of my own jammies and clothes. And, to be able to walk outside soon, and feel the cool fall air on my face, would do world of good.

Last night I had the cold/sweats, not comfortable at all and very difficult to sleep. All part of the engraftment, so a small price to pay. I’ve still been very blessed with no pain, which is a very normal side effect of the engraftment. So, I’m prepared for it, if it comes.

Numbers 09.12.13 Rising

Numbers 09.12.13
Rising

Hair watch… It’s a flying out left and right. I think it’s time for the hair net, it is flying out everywhere, you should see the shower when I’m done. Poor cleaning lady. I have a nice little bald spot going on the side I can sleep. A little difficult to sleep on my normal side with Marvin in the way, so I’ve had to adjust.

And we really can’t make this stuff up about the food. I know what it looks like, and it smells just as bad. I truly think it’s left over tongue from yesterday, with some type of gravy and barley. Thank goodness they usually serve a soup with lunch, or I’d really be in trouble. The soup today, though, not one of my favorites, but better than this option. I really make the most of the breakfast, it goes down hill from there.

You just can't make this stuff up.

You just can’t make this stuff up.

VW

I may not be a “Brick House”, but feeling pretty good today! So, get your groove on.

+7 – Up Up and Away!

Sept. 11, 2013 – +7
OK, you have to listen to the cheesy song for effects… Work with me here, I’m in the hospital sharing.

UP UP AND WAY

UP UP AND WAY

Numbers are in!

number 9.11.13  UP!

number 9.11.13 UP!

Finally this afternoon Dr. F was able to bring me the news I’ve been waiting to here, Leuk up to .16. It’s been rocking steady for a few days at .10, so this is great news. Also, he says now, engraftment in 2-3 days. Kristy started hers already, and it can be painful. But, with a nice little shot, it helps the pain.

Also, on the hair front, it’s falling out like the fall leaves. Took a shower and there it was. So, I’m pretty upbeat today with all the good news.

Apparently they must of alerted the kitchen staff of all the good news, so they made sure to include a nice celebratory tongue, just for me with lunch. 🙂

Celebratory Tongue to boot

Celebratory Tongue to boot

VW
So, the season is turning… enjoy.

+6 – Hey Soul Sister…

Sept. 10, 2013 – + 6

OK, still at the bottom, numbers are still 0.1. Ready for some movement, UP! UP! Let’s put some energy into this, positive thinking for Vicki’s Leuk number to rise.

Think rising numbers for me!

Think rising numbers for me!

09.10.13 Numbers Holding steady

09.10.13 Numbers
Holding steady

Well, with the numbers holding steady, I’m trying to not get discouraged. I’ve been told bottom can be a few days, so mines seems to be wanting to hang down there a while. Kristy is a day ahead of me and hers are on the rise today, and she seems to be feeling better. She even was able to smuggle me in one of the chocolate protein drinks, I’ve been out of for a few days. Thanks Kristy, they have sanitized it well. No germs on that bottle. I’ll cherish it later.

So, what do you do when you are just sitting around for your immune system get re-booted? Well, glad you asked. Let’s take bets on when my hair falls out. We can do it in days, time. So, you can set the date and let me know. The grand prize… drum roll please! The pure joy you were right when my hair fell out, or I can smuggle you a cow tongue out. I recommend the first, since I’ve shown you photos of the tongue.

Hair contest - front

Hair contest – front

Hair contest side - NOTE Marvin is still attached to neck.

Hair contest side – NOTE Marvin is still attached to neck.

Tom and Pizza -  Missing both, a lot.

Tom and Pizza – Missing both, a lot.

My little Dottie Girl, miss her so much too.

My little Dottie Girl, miss her so much too.

VW

+5 Rock steady…

Sept. 9, 2013 +5

Well, my numbers are holding steady, Leuk – 0.1 (so looks like it’s hit a plateau), still looking at 4-5 days for engraftment, so we still wait and hope those little buggers get ready for a party in my system and want to grow and re-produce, (close your eyes, give them some privacy here).
privacy Quiet Please!

numbers 09.09.13

numbers 09.09.13

The other numbers are all good, everything is ticking right along. I’m blessed that the other numbers are good, they mean my energy levels aren’t too bad. I do nap, but not as much as you’d think. I stopped taking sleeping pills, over a week ago and stopped the magnesium I was taking for the painful Spasticity I usually suffered from in the late afternoons and evenings.

We have a new HSCT patient that arrived from Canada and is being admitted today, Welcome Keith. With my computer power issues, I was able to ask him to bring me a new converter so hopefully I’ll continue to have charge on my laptop the rest of my stay. The exchange has been made, and I hope to meet him and his wife next week, when I’m out of ISO.

On the hair front, it’s still holding strong. Kristy and I have a race to see whose will fall out fastest, but so far, my little numbs are holding tight. Shoot, it’s not even as grey as it seemed when they first shaved it. Yes, and this gown may be a keeper, they come in a wide variety of blues, purple, and pinks. This may catch-on, I could be a trend setter.

Hair watch 09.09.13

Hair watch 09.09.13

VW

Rock Steady!

Houston we have power…

Sept. 8, 2013: Sunday – Moscow.

Well, seems the battery decided to charge a little for me this morning, so I can actually catch you up with everything that’s going on.

Below are the pieces of paper given to me by Dr. F showing my numbers for the day. The vampire comes in mighty early, to draw the blood so it can be ready for him to visit after breakfast. The number that I watch is the Leukocytes, this is my immune system dropping and kickin’ MS out the door. So, you can see I’ve had a steady drop, and today it’s 0.1 which is pretty darn close to as bottom as you can get. He said it will probably bottom out at .05, but then engraftment will begin to take place over the next 4-5 days. This is when those babies start to do their job and close the door on MS for me.

Sept. 5, 2013 Hemoglobin 120 Leukocytes 1.7 Platelets 94

Sept. 5, 2013
Hemoglobin 120
Leukocytes 1.7
Platelets 94

Sept. 6, 2013 Hemoglobin 119 Leukocytes .33 Platelets 77

Sept. 6, 2013
Hemoglobin 119
Leukocytes .33
Platelets 77

 

Sept. 7, 2013 HB - 122 Leuk - 0.16 Plt. - 62

Sept. 7, 2013
HB – 122
Leuk – 0.16
Plt. – 62

Sept. 8, 2013 Hemoglobin 116 Leukocytes 0.1 Plts 48

Sept. 8, 2013
Hemoglobin 116
Leukocytes 0.1
Plts 48

So, happy dance is happening in my room right now.

Happy Dance

Happy Dance

I actual feel pretty well, and just take naps as needed.
VW

A little Doobie Brothers for your morning..

Part 2 – End of the Line… It’s all right.

It’s all right!  End of the Line for MS.

http://www.youtube.com/watch?v=cwqhdRs4jyA

Guess, I had some Chemo brain going yesterday and did not do a good job describing what you were seeing. So, here are the photos with Captions.

The bucket is waiting for me to get up an pour out the contents.  No more stem cells in there.

The bucket is waiting for me to get up an pour out the contents. No more stem cells in there.

preparing to pour out the "dry Ice" I think, that preserved my stem cells, while they were waiting to be re-inserted.

preparing to pour out the “dry Ice” I think, that preserved my stem cells, while they were waiting to be re-inserted.

All Stem Cells are out of the bag and ready for to be re-inserted.

All Stem Cells are out of the bag and ready for to be re-inserted.

Good to the last drop

Good to the last drop

BP dropped, so giving some time to get regulated again.

BP dropped, so giving some time to get regulated again.

Dr. F in constant contact with my hand, ask about what I'm feeling, so he can be on top off any issues.

Dr. F in constant contact with my hand, ask about what I’m feeling, so he can be on top off any issues.

High Five With Dr. F, it has gone well.

High Five With Dr. F, it has gone well.

0 – Wildest Dreams…

Stem Cell Transfusion Day: Sept. 4, 2013. (yesterday)

We, I never dreamed in my wildest dreams tought I’d be sitting in a hospital room in Moscow, of all places, having HSCT, a procedure to re-boot my immune system rid my body of MS. (maybe not the lingering effects, but to stop it) Shoot, who ever thought I’d get PPMS? Really? Such a long shot.

Anyway, yesterday was a big day, they re-inserted my stem cells, and I’m on an up an down roller coaster. The day started, with some Chemo Nausea, so that wasn’t pleasant. They gave me something to calm that down, and they prepared the room for my the procedure. I’ll post the photos, to give you a better idea of what was happening, enjoy the Moody Blues, “Wildest Dreams” at the same time. Who knew this was even possible, never in my wildest dreams.


my blood pressure has dropped very low now, they are watching me closely.  I don't feel too well right now.

Dr. F is asking me about my systems, pain in my chest, horrible taste in my mouth and difficuclty  breathing

giving me time to get my BP back up and feel a lttle stronger

gotta git that last drop.

all empty

dr. F is preparing for the traditional throwing of the dry ice.  I'm still trying to get my strength up to get out of bed.  But rally pertty quickly;
all done

I made it
no falling

High Five With Dr. F, it has gone well.

High Five With Dr. F, it has gone well.

Getting ready for my Big Parade!

Tuesday, Sept. 3, 2013

Today, I am reflecting on what I’ve been through to, to get to this point. Applying all over the world for treatment, getting declined, getting accepted to Russia, the fund raising and all the support to get me to this point. And it will all come down to tomorrow “my big parade” when my stem cells will be given back to me to re-boot my immune system. I just watched Kristy’s processes, and know I’m ready. I’m tired, but that is to be expected, so today I try and rest.

The countdown goes as I ready for my next step in Kickin’ MS.
VW

On the light side, Kristy’s brother brought me in a cheese burger, and I’ve never tasted one so yummy. Ready for some good Home Cooking!

Best Burger I've had in a long time!!  Thank you!

Best Burger I’ve had in a long time!! Thank you!

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