+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!

Chemo day 4 – Shake it up Baby…

Day 4 of Chemo: Sept. 2, 2013

Re-cap of yesterday. Same-O, Same-O. Chemo for 4-5 hours, then a rest. Kristy and I did get out and take a walk in the light rain, it felt so refreshing to get out of the room, even with the light rain. I bought a coke, which I’ve not had in almost a couple of years, and it was so good.

Today, Dr. Fedorenko came in to check my vitals, all looking good. Today is the last day of Chemo, then tomorrow is break day. I have a special guest coming this afternoon, Dr. Giles, from Mississippi, will be here for a little visit. Looking forward to seeing a familiar face.

So, not to much to report today, but I did receive an very inspirational video from my nephew last night.

Chemo Day 3 – The Boxer…

Day 3 of Chemo: Sept. 1, 2013 – 25 days until I’m home!

Today, is a repeat of the last two days. Get up shower, see Dr. F, he tells me how wonderful I’m doing and then they hook me up for 4-5 hours to a chemo drip. Not too exciting, but part of the mission. I have one more day of this, and then a nice surprise, our good friend, and Surrogate Dad, Dr. Giles will be stopping in for a visit tomorrow afternoon. It will be so nice to see a familiar face and one that speaks English, well, New Orleans Cajun, close enough for my ears. I’ve given him a little list of some items to bring me, Snickers, toothpaste and some juice. Not a normal combo, but it will get me through the remaining days. The Snickers are a nice treat after Chemo, I’ve lost a little weight, so not worried about the calories at this point.

The next steps will be, Tuesday a rest day. Wednesday they will give me back my stem cells, all fresh and ready to re-boot my immune system, so it doesn’t remember it has MS. This is the goal, that I’m fighting for. After they return my stem cells, this is when I will start to go into total isolation, since my immune system will be very week, and I could catch anything or get an infection very easily. So, clean room to the max, and they will take away my street clothes and provide jammies for me, and scrub my room from top to bottom. I will still have my laptop, phone and Kindle, but they will have been sanitized for me. So, I’m putting on my boxer gloves and getting ready for the next round.

VW
PS Thanks for all the wonderful posts and comments, they really help and let me know I’m not alone here.

The Boxer – Allison Krauss – Enjoy

Family

Family

Chemo Day 1 – Babylon…

Completion of Day 1 Chemo: Friday, Aug. 30, 2013

Made it through the three cycles. The first comes around 11-12, and runs several hours, I tried to read and then sleep through it. It really took all my energy, I didn’t really feel bad, just really weak. Kristy and I tried to take a walk in the afternoon, my legs were so weak, I just made it to a park bench and enjoyed the cool weather, and being out of the room. I always worry about falling, and tripping, so this was a big concern of mine at this point.

Made it back to the room for a break and a visit with Dr. F, he showed me the schedule for the next four days, and I would have a another small dose still today, and then another infusion late this evening, 11:00. The small dose was fine, but then I tried to stay up for the late dose and fell asleep. She woke me and hooked me up and left, shortly thereafter an alarm went off on the pump and it showed air in the line. I’m thinking this can’t be good, so I called the nurse. She promptly came and tried to bleed the line of the air, but after 30 min, it just wasn’t working. She got a new bottle and line and started all over again. So, this was a really late night and I slept again, then woke up to see it almost done and rang for her to disconnect it. Glad that was over. I then see a message from Kristy that the dose was MESNA, and I should drink a lot of water to flush it out, it can make you nauseated, which I was beginning to feel a bit already. So, I downed a liter of water, and proceeded to need to pee every hour on the hour. Guess it worked though, I did not have any nausea after that. Handy having an English speaking nurse as a friend just two doors down. 🙂

I woke a bit tired from the late night and frequent bathroom breaks, but starving. The dinner last night was not a favorite, maybe not of anyone. I went to jump in the shower and noticed my “Octopus”, let’s just call him “Marvin”, well Marvin was bleeding around the bandages, so I went and showed the nurse show she could change the bandages after my shower. No bleed out, just needed some cleaning up, good to go again.

Kristy wanted to get out for a walk early, before we are zapped after the chemo, so we took a stroll. The leaves are falling and the air is crisp, it felt wonderful to sit out for a while before hitting day two.

Yes, I'm the good one with the lunch lady net on.

Yes, I’m the good one with the lunch lady net on.

Kristy

Kristy

David Grey – Babylon Enjoy, while meeting more of my friends that helped me get here.

Girls Night

Girls Night

IMG_0015

IMG_0026

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IMG_0076

1980-01-01 00.00.17-1</a1980-01-01 00.00.37

1980-01-01 00.00.14

1980-01-01 00.00.23-1

Into the Mystic…

Day 1 – Chemo:

Well today’s the day they start to kill off the bad stuff, and some of the good, that’s how chemo works.  You have to kill some of the good with the bad, and hope that they outcome is,

Chemo Day 1

Chemo Day 1

the good is strong enough to fight back and blossom.   I was a bit lightheaded this morning, probably from not eating enough yesterday, due to the pain.  But, I made it through the night and woke up just in time to see my Ole Miss Rebels defeat Vanderbilt 39-35, in a last minute win.  So, it made it all worth while. 🙂

I will have two rounds today, plus a mound of pills to choke down, before the day ends.

Short post today, a bit tired, but wanted to keep you in the loop.  I’m still here and kicking.

Van Morrison – Into the Mystic
http://www.youtube.com/watch?v=O0DJ8hWgNes<

These are the reason I'm here fighting, and many others of you I don't have photos of, but your in my heart and head. And my battery is dying, so you will get your 3 sec. of fame tomorrow. Thanks for your love and support!.

Thomas and Vicki

Christmas Trip 2009 024

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family

family


Team Vicki

Team Vicki

IMG_0357

Can’t keep a Rebel Down!!

A little late posting today, sorry.

My day started off nice enough, woke up refreshed and ready to go. Amazing how fast you can get ready in the morning when you don’t have hair to deal with, so out the door in a flash for a nice walk. I went to the chapel this morning for some quiet time. 2013-08-19 21.47.51 Fall is in the air here, so I was loving the walk with the leaves drifting down around me. So, I get back to my room and take a rest, then it’s time for the “octopus” installation. They put in my new line in my jugular, (other side this time) for the chemo that will begin tomorrow, and that bugger hurt like the dickens.

New "octopus" lines for chemo

New “octopus” lines for chemo

Had me down for a while, it felt like my head would explode. I pressed the nurses button, which, by the way, when it chimes, sounds just like the ice cream truck is coming down the street. This may explain my unusual desire for ice cream since I’ve been here. Sorry I digress. She comes to see what is wrong and comes back and reapplies the bandages on my neck, I guess thinking they are too tight and cutting the blood off to my brain, not sure about that idea. Anyway, it didn’t help at all, and not too long later she came back and loaded me up with some good pain meds, and I’m feeling much better. What away to ruin such a beautiful day.

Anyway, it takes more than that to take me down.

Hotty Toddy! Go Rebs!

Hotty Toddy! Go Rebs!

Back at home it’s Football Time in the South and my beloved Ole Miss Rebels will start their season tonight vs. Vanderbilt University. Hopefully I can watch it on replay tomorrow, but if not, please don’t tell me the score.

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