HOME!!

Sept. 26, 2013

I’m HOME!!! And it feels great!

The flight wasn’t that bad. OK, eating my words now…I do recommend having someone with you though. It was manageable, but a little difficult since my legs were so weak. Things like, I don’t know, trying to find the right person to check me in at the Airport in Moscow, while dragging your luggage along. They sent me to three different places, and then finally found the right person. I ended up having to sit for an hour for someone to get me with a wheelchair to take me through security. Just getting on the plane was a challenge too. I’d checked my suitcase, so all it had was a backpack and a small plastic store bag, with some food. This was more than I could carry on my own, without toppling over… which I did. I’m so graceful when I fall. I would ask for someone to carry them to my seat for me, so I could just walk down the isle, but this was not always as easy as you’d think on a busy flight.
So, If possible, either carry nothing, or have someone to help out. You will be as weak as a new born kitten.

Saying good-bye to everyone was bitter sweet. It was great to have Kristy there to go through this with me. Many of messages back and forth while we were in ISO, kept us in touch. Also, the SOFA group (my sister’s that have already been through the treatment in Russia or are about to go through the treatment)

Dr. F and Dr. Julia

Dr. F and Dr. Julia

Best Nurse Ever

Best Nurse Ever

Keith Moore (Canada), me and Kristy Cruise (Aussie)

Keith Moore (Canada), me and Kristy Cruise (Aussie)

The lounge

The lounge

My room card. You can clearing see my name at the top... In Russian. Not sure what the heart was for, but I'm sure it's because I was AWESOME!

My room card. You can clearing see my name at the top… In Russian. Not sure what the heart was for, but I’m sure it’s because I was AWESOME!

Bitter sweet to my friend Kristy.  We went through this all the way together. It was great to have someone there to share with.

Bitter sweet to say good-bye to my friend Kristy. We went through this all the way together. It was great to have someone there to share with.

Side bar… Hulk Hogan was on the flight from Atlanta to Little Rock. As was Mike Huckabee, but doubt you know who that is, and I didn’t get a photo of him.

Hulk Hogan

Hulk Hogan

Dottie needs extra cuddle time... so do I. :)

Dottie needs extra cuddle time… so do I. 🙂

I plan on keeping you up to date on how I’m doing, on a monthly basis. So, thanks for being there during my journey. Now, the work begins to get my strength back and continue to live a healthy life without MS raring it’s ugly head.
VW
I know I’ve posted this song early on, but it really applies now. HOME!

+19 – Hit the Road Jack

Sept. 23, 2013 +19

Sorry for the late post, but was waiting to meet with Dr. Fedorenko to prepare for discharge tomorrow.

They did extensive blood work this morning, and nothing out of the ordinary to report. My Leuk. levels are still within the safe zone, 6.12. They never hit the high of 10, but well within the safe zone and I have my all clear to head home.

Leuk - 6.12

Leuk – 6.12

I actually saw Dr. F when I was walking the stairs today for my exercise, it was raining out and I still need to keep these legs moving. He said I wouldn’t need the stick in 6 months, I said, more like 3, and he smiled and said send him the picture.

We sat down and went over some basics, what to eat and not to eat. Basically, he said eat healthy, re-introduce fresh fruit and veggies, slowly. And make sure they are thoroughly cleaned. Meats are fine, just not fried, and make sure everything it thoroughly cooked. So, smart, healthy eating to gain strength and continue to improve.
Can’t complain. I’ll be given 10 days of some medication tomorrow, with instructions. And I’m to have blood work done in 1 week and again in 2 weeks, from my GP, and send him the results. He said it could take weeks to get in with a Hematologist, and it wasn’t really necessary at this time.

I’ll keep you posted as I continue my healing at home. It’s been real.

So, with that, I’m outta of here!
VW

+18 – Rolling, Rolling

Sept. 22, 2013 – Day +18

Not much to really report today. They won’t do blood work until tomorrow, and then it will be very extensive to get me prepared for my discharge on the 24th… I know, Tuesday! Just right around the corner. Can’t wait.

I didn’t have any bone pain last night and even the night sweats seemed much better. So, I’m really feeling well today, and plan on taking advantage of that and walking more. Now if the weather cooperates, that’s a different story, but I can walk the halls and try to walk some stairs, if that’s what I need to do to keep these legs moving. A few have asked if my legs are weak like before, from the MS, or weak from not being used. They are weak from not being used. Totally different weakness. So, hopefully with some walking and then PT when I return, I will gain some real strength. And Kick Some ASS… so watch out.

Kristy had a big day yesterday, and went out all day with her brother and was able to meet her new nephew for the first time, he was born just a few days ago. Upon her return, she had brought me some nice treats. 🙂 One was this sweet roll, which I just devoured for breakfast. (yes, ended up eating the whole thing, not just the half) I’m on a total sugar high right now, and loving it.

Sweet roll

Sweet roll

She also brought Peanut M&M’s, which I enjoyed one of the bags last night shortly after she left the room, and will save the other for tonight. A mandarin orange, which, I will save for dinner tonight. You have to plan out the special food to make it through dinner.

Every day they bring me a baby yogurt, and I save it for the dinner, since I know that can be hit, or more likely miss. This is the first one with a pineapple on it, or any hint that there is possible fruit flavor in there. Can’t wait to see how this taste. Really, the little things that bring me much joy. 🙂

Yogurt with Pineapple

Yogurt with Pineapple

Some times lunch includes a can of this baby food. Not sure why, and I’m NOT going to eat it, so random.

Still baffled at the baby food.

Still baffled at the baby food.

So, as you can see, just bored today, and rambling on. Hope you all have a happy Sunday.
VW
Some energy to get your blood pumping. Tina has some energy to share!

+ 17 – Quiet Saturday in day in Moscow

Sept. 21, 2013 – Day +17

No numbers today, just a quiet day without being injected with anything. No drips twice a day, no one asking for my BP and temp, just seems to be pretty quiet. Very strange, since most of the time I’ve been here the morning’s are a buzz of activity.

I had some mild bone pain in my knees and legs again last night, but nothing to sound the alarm. Just took one Advil, and went back to sleep. So, it’s manageable. Night sweats and chills were min. too. So, feeling dog gone good today. Dr. F is at a conference for the weekend, but has left us in the loving hands of Dr. Julia, she speaks English very well and is so kind. She checked on my right after first breakfast and removed the bandage from Marvin. Said all looked good.

bandage removed

bandage removed

cleaned up.

cleaned up.

It’s supposed to be cold and rainy here today, but I still plan on trying to get out between rains and walk. I went out yesterday, late afternoon for a walk around the outside of the building. Let me tell you, the curbs here are NOT ADA compliant, not even close. I tried to step up onto the side walk and took a little tumble. And then was so weak I was afraid I wasn’t going to get back up. Luckily, Keith Moore, our new comrade from Canada was out and able to assist. He’s now weak to though, just finished his first round of Chemo that afternoon, so it was a task to get me back on my two feet again. NOTE TO SELF: stick to the parking lot’s and leave those crazy curbs for the newbies.

We have a new HSCT from Canada, Maya, I plan on stopping down on the 2nd floor to hopefully meet her and her mother sometime today.

So, that’s it from Here is Moscow. Have a great weekend!
VW
Saturday in the Park – Chicago

Stronger!

+ 16 – Marvin, Heard it through the grape vine.

Sept. 20, 2013 – Day +16

Numbers: Luek – 4.97 creeping up a little, but still in the safe zone. Would love it to keep rising closer to 10 before I’m sprung, but I’m the tortoise in this race, so that’s how it goes.
Leuk 4.97

But the big news today, was that “Marvin” has finally been released me from the neck hold he’s had me in for the past several weeks. And I can honestly say, much less painful coming out than going in.

Here is what Marvin looks like, in my neck. Three lines to the outside.

Here is what Marvin looks like, in my neck. Three lines to the outside.

Laying very still ready for it to come out.

Laying very still ready for it to come out.

And there you have it folks, Marvin, is out!  The long blue line went down my jugular to my heart.

And there you have it folks, Marvin, is out! The long blue line went down my jugular to my heart.

My favorite nurse!

My favorite nurse had the honor!

So, just when you think the day can’t get better, they serve my favorite lunch.

veggie noodle soup, boiled chicken, and rice.

veggie noodle soup, boiled chicken, and rice.

I take the chicken off the bone, add it and the rice to the soup and it’s like chicken noodle soup. I savor every bite. Yes, I save the bread for later, lord knows what is in store for dinner, but for now I can still taste my chicken noodle soup on my lips.

VW
First, couldn’t not let you hear some Marvin Gaye, “I heard it through the grapevine”.

But, love this one, HIGH HOPES!

+15 – The Lion Sleeps Tonight – Or decides to keep me up all night

Sept. 19, 2013 – Day +15

No blood work today.

So, the Lion has been sleeping.

Lion Sleeping

Lion Sleeping


We’ll we knew I couldn’t get this without some pain, that would have been just crazy talk. Last night I woke up with major bone pain in my legs. Mostly my knees and working it’s way up and down the legs. This is caused by the stem cells engrafting, and making room them to keep growing. They are trying to make some noise, and I noticed. I sent some FB msg to some alums from the group and they said, yes, push the button and ask for some relief. No way I was going to get any rest if I didn’t, and this was WAY more pain that an Advil was going to work on. So, a nice nurse came in, I pointed at the chart showing pain and where was, and she came back in and gave me a large injection into Marvin. It helped enough to allow me to sleep a bit, but still this morning my knees were so weak I was afraid I wasn’t going to be able to get out of bed without help. I made it, but very slow go.

I’d dropped a napkin on the floor after breakfast and bent to pick it up and just fell right over. Had to end up crawling to the bed to help me up and decided, bed might be a good place for me for a bit. Not a pretty sight.

When Dr. F came in for rounds, he ordered a Steroid shot, in the bum, to help out with the pain. I’m being weaned off of them, so wasn’t too keen on having another one, but I’m in pain. Anyway, that should hold me over for a while. The knees are still really weak and sore, but I’m managing. He said he would have some pain killers for me tonight so I could sleep. My last steroid infusion will be in the morning, so they can take Marvin out. They don’t risk leaving him for too long, it increases risk of infection. So, Marvin will be a thing of the past before noon tomorrow. Any other injections I will need will be the old fashion way, shots.

So, now I’m on the true home stretch to come home. I’ll meet with Dr. F on Monday to go over final instructions and restrictions, and orders for my doctors to keep on top of things when I return to the US. I’m checking out of here on the 24th and staying at a hotel closer to the airport, since my flight is at 11:40 am, and the traffic here can delay you for three hours easy. So, didn’t want to take any chances.
VW

+14 – Still Kickin’ It

Sept. 18, 2013 – +14

Made it nicely through the Retuxmab Infusion yesterday. They started me off with a drip bottle of Benadryl, so that pretty much knocked me out for most of the day. Only side effect I had were night sweats, but I’ve been having those most nights since engraftment, so not that big of a deal. Plus, I was so sleepy, I just slept though it.

Woke this morning refreshed and good to go. If it weren’t for the fact I’m so weak, and need a break after everything I do, you wouldn’t know what I’ve been through. Oh, and the fact I’m bald. 🙂 I have been able to stay on top of my laundry now, and do a little at a time. Dr. F came in and saw me doing it in the sink, and said “I have can have the staff do that”, but why, gives me something to do and I feel good about having my clothes clean. They have heated towel bars in the bathroom, so you learn to rotate a lot. I’m back to the habit of doing my own dishes again. In total ISO, they won’t let you, they have a special container to soak them overnight, but not needed no since my ISO is lifted.

My Leuk numbers dropped from two days ago, they are down to 4.58, from a high of 9.4 before the Retuxmab Infusion. Not too happy about that, but still within the normal range. He said it can also happen and when I return home to take my temp. every day to make sure no infections. He will write orders for my GP to help monitor this, and for me to stay on top of it. So, clean zone home for sure when I return.

The weather is nice today, I’ve still not taken my outside stroll yet, mornings are usually fully packed here. With “Marvin” coming out on the 20th, that means the infusions will stop and give me more freedom to walk more. Just realized, the 20th is day after tomorrow!!! Can’t believe it!

Marvin's coming out on the 20th, Happy Dance!

Marvin’s coming out on the 20th, Happy Dance!

And then lunch arrives... no shock, tongue.

And then lunch arrives… no shock, tongue.

VW
Mumford and Sons played this weekend in St. Augustine, FL. Everyone says it was a great event. So, here is a great one from Mumford and Sons to start your day.

Previous Older Entries