Kickin' MS with HSCT

I’ve been home three months tomorrow and looking back it’s been quite a year. We crammed a lot in over the summer, with selling a house, packing up and moving halfway across the country, fundraising, and then going to Russia for HSCT. For the last 3 months I’ve been in recovery mode. It’s amazing how weak I was when I first returned and how far I’ve come in my recovery. I remember needing to hold on to Tom just to walk up the two steps to our front door, now I’m walking a mile every other day. I’m still not up to my pre-HSCT strength, so watch out when that happens. I finished up PT last week and now it’s all on me to keep working out. I’m going to start going to the gym again January 1st. Lifting weights again should really help, I just have to remember slow and steady.

My hair is really coming in now, and I don’t wear a hat in public any longer. Kinda proud of my new hair. I’ve been taking a photo every week for the past 8 weeks to see the progress. You can almost see it growing.

Look at that side sweep!!
I’ve been improving right a long, but am experiencing extreme joint pain still. It’s fine if I’m moving or sitting still, but once I need to move from sitting, laying down or standing still it hurts. It should go away in 3-6 months, and that can’t happen soon enough for me.

I’ve been truly blessed this year to be able to have this treatment, and I will always be thankful for all of those that helped me get there. I’m still sending monthly updates to Dr. Fedorenko, and he is very pleased with my progress and believes the treatment was successful in stopping my progression. What a way to end the year and start fresh in 2014!!

Merry Christmas and Happy New Year!!   VW

November 19, 2013

How time flies.  I can’t believe it’s been 2.5 months since I received my stem cell transplant in Moscow.  I was just looking back on the post, and remember how nervous I was at the time.  I knew this could be one of the parts of the treatment that could be a bit painful, and it was.  It lasted such a short time, it’s a distant memory now.  Looking back I know it all was worth it.

At this point everyone wants to know if the treatment was successful.  For HSCT to be considered successful it must stop the progression of the disease.  No one promises you that any symptoms will go away, or any damage reversed.  We all hope for that, but it’s not what is considered a “successful” outcome, it’s a BONUS!  For me, with PPMS, it might be a year before I can say the disease has not progressed, so it’s a waiting game.  When you first come home from the treatment I call that the “Honeymoon” period, you are still pumped up on steroids and your symptoms are masked.  So, you think your symptoms have disappeared, but they are just hiding, they sneak back up, maybe not a strong as before, but they come back.  I am now on the recovery roller coaster.  My systems may come and go over the next 12-24 months.  So, the final outcome remains to be seen.

What can I tell you 2.5 months post transplant?  (I’m going to use the format that Kristy used, she went through the treatment with me, so we have some uniformity.  And I thought she did a great job explaining her progress).

MS SIDE EFFECTS THAT HAVE DISAPPEARED SINCE TRANPLANT:

None – NOTE: I have PPMS, not RRMS, so how MS effects me is different than Kristy

OLD SYMPTOMS AND HOW THEY ARE NOW:

Fatigue – Much better.  I need a nap during the middle of the day to recharge, but I really think this is from the chemo.

Leg weakness – I am weak from being in the hospital for 5.5 weeks, and am getting stronger every day.  I do exercises from PT and walk daily.

Heavy Legs – This really does seem so much better.  I would almost say it’s gone, but let’s wait and see.

Bladder urgency – Much better, almost normal. 🙂

Leg Spasticity – I still suffer from this, mostly at night.  It’s not as bad as before, but I have had a few nights it was very painful.  Usually if I take a Magnesium supplement in the early evening, and then again before bed, it’s under control.  This had completely disappeared while I was in the hospital thanks to the steroids, but re-appeared as those wore off.

Toe drop – It’s still there in my right foot, but it does seem to be improving as I gain strength.

NEW TEMPORARY SYMPTOMS THAT CAN BE ATTRIBUTED TO CHEMO AND STEM CELL MOBILISATION:

• Hair loss
• Bone and joint pain
• Fatigue
• Hot flashes (hormonal imbalance from the chemo)
• Muscle weakness (from long hospital stay)

The symptoms that bother the most are the bone/joint pain.  I have it all over, but I notice it mostly in my legs, (knees, hips and ankles).  It really is painful when I’ve been sitting or laying down for any period of time.  It aches to get up and get moving again.  So, just turning over in bed, or getting up from a chair is very painful right now.  I’ve heard this can last from 3-6 months, hopefully the lessor of those. 🙂

My gait seems to be improving, this is because the toe drop is not as bad.  I still walk funny and use my trekking pole, but I can see not needing it in the near future.  Most of my unsteadiness now, I feel, is from my muscles still being weak from the hospital stay.  So, with continued strength training this should improve as well.

What can I do now that I was not able to do before HSCT???  I walked 1 mile over the weekend!! And the last part was up a big ass hill.  I’ve not been able to do that in a couple of years, so a really big deal.  It did take me a day to recover, but so worth it. I was at PT yesterday and told him of my progress, I’m rocking PT BTW, he said that was great, but to hold steady at 1 mile for now.  So, slow and steady…   Oh, well, I’m still hoping for more progress in the future, and I won’t give up.

I want to thank everyone who has been there supporting me through this journey. Your prayers, positive thoughts, phone calls, messages and financial support has made this possible for me. THANK YOU ALL!!
VW

Oct. 25, 2013

Tuesday marked one month since I was discharged from the hospital in Moscow. I had my one month blood work on Wednesday and it was all still within normal ranges!! YEA!! I’ve stayed pretty close to the house during this month, and limited visitors as well, I really didn’t want to take any chances of catching something from anyone. With my still new immune system a cold could really be hard on me and set me back. The local doctor has told me if I get a fever to go straight to the ER, she takes this very seriously. So, as stir crazy as I’ve gotten, I haven’t gotten sick either. I’m starting to get out more, this week I’ve gone shopping with my sister and out to lunch the girls another day. So, I’m slowly getting out there but still be cautious.


I didn’t drive until last week, my legs were so weak I was afraid I wouldn’t have the strength to quickly change from the gas to the break in a timely manner. Trust me, you wouldn’t have wanted to be on the street with me driving. So after a test drive around the neighborhood, I felt ready to hit the streets, and that I did. So watch out Little Rock, I’m driving again.

I walk several times a day, walking my dog a few times and than every other day I add a solo walk for distance. I’ve done this since I returned and slowly walk a little further as it becomes easy. I’m now up to 0.6 of a mile, and last night it was getting easy, so it’s time to go a little further. This is the same distance that the walk was around the block in our neighborhood in Florida, and I had not been able to do that in a long time. (In Florida it was flat, here it is very hilly). If feels great, my legs feel weak, but not like I’m walking with cement blocks on my feet. And I haven’t felt that way in several years. Then on Sunday and Monday, it changed, the cement blocks were back. I was freaking out, was the transplant already failing? It’s only been a month. But then Tuesday I woke up and they were fine, so I’m on the healing rollercoaster of HSCT. I’ve been told by others that this is normal, especially the first few months. In the hospital the spasticity in my legs went away, this was a nice surprise. Usually in the late afternoon, it would start and by the evening it would become painful and you could see my legs actually jump from the spasm. When they went away in the hospital I was pleasantly surprised and every morning Dr. Fedorenko would ask how my spasticity was, I would reply, “What spasticity?” Well, that was nice while it lasted, it’s back. Not as intense as before, but still back. I take a magnesium supplement and it takes care of it, but hope it will go away again for good. So, my ticket has been stamped and I’m going to ride it through, all the bumps and loops that come my way.

Next week I start Physical Therapy, and can’t wait to see how that goes. I know just may walking has strengthened my legs, but they are still very weak. If I am on the floor, I have to crawl to something sturdy enough for me to pull up on, not a pretty sight. I don’t know what I’d do if I fell on one of my walks, there would be no way for me to pull myself up. OK, I need to put that thought out of my mind and just not fall. I’ve also started a Plank Challenge. If you don’t know what the plank is, check out this link, awesome exercise and easy to do. http://www.youtube.com/watch?v=kiA9j-dR0oM So, I can’t keep up with the challenge schedule, but I’m still doing it and able to add more time everyday. Never Give Up!!

My energy level is better too. When I first returned I had to take a couple of naps a day, now I start to crash mid day and take an hour nap and then good for the rest of the day. So, improvements are happening, slow and steady.

Thanks for everyone’s support and prayers. I’ll post again in a month and hopefully will have some good improvements to report.
VW
Fighter

Sept. 5, 2013

Just had to share this.

I was walking last night and noticed, my legs weren’t “heavy” when I walked. This is huge, because this is how my legs have felt for the past 4 years. Like I couldn’t take one more step because my feet felt like they had been put in concrete blocks. My legs are weak, don’t get me wrong, but it’s different. I was walking up the street to check out some work they are doing clearing for a new road, and walking up an incline and then walking around looking at the site and it hit me, I’m just walking, I’m not dragging my legs. I still am using my stick for balance, I have only been home a week and a half, but this felt so good. I know I must of had the biggest smile on my face walking back home. I know as my legs get stronger this is only going to get better. I have such hope!

These little things mean so much as I continue to heal and get stronger. The thought of being able to go walking with my husband or even explore all of the great hiking trails we have in our neighborhood. All of the possibilities.
VW
These Boots were made for walking…

I can’t believe it’s just a week and two days, since I was discharged from the hospital. It seems longer, maybe because I haven’t left my house except once.

Many have asked how I’m feeling. I feel great, considering what I’ve been through, just still weak, but that’s going to take time to build back up. I am walking outside regularly and last night went the furthest and felt the strongest I’ve felt yet. So, the walking is working, just taking it slow and easy. I still can’t seem to stay awake past 8:00 pm, but then wake up every couple of hours, so not sure how to resolve that problem. I really only nap a couple of times a day, for 45 min to an hour, so it’s not like I’m sleeping my days away. I do laundry and empty the dishwasher, so little things. I’m not supposed to clean, or handle raw meat, and I can’t walk Dottie, so some things Tom must do.

I did have my first outing this week, to the grocery store on Tuesday with my Mom. We were in desperate need for pretty much everything, and this is no exaggeration. So, Mom and I set out for the store, me masked up, antibacterial wipes in hand and ready for the adventure. (Mom did try to wipe everything down before it went into the cart, but had to stop her from that, they are just going to be touched by the check out and bagger, so what’s the point). Not to brag, but I did push the cart the whole time. 🙂 OK, that was also for balance, but just saying, pushing a loaded cart through a store is no small feat. We made it, bought everything needed, and only ran into one person we knew. OK, they recognized Mom, I was pretty much the masked, bald bandit, so no one would have known me. Anyway, good to see her again, it’s been years for me. We made it home, Tom unloaded the car, Mom headed home and I crashed for a two hour nap. It really took it out of me, more than I realized at the time. So, I had planned on making dinner that night, scratch that idea. Every man, woman, and dog had to fend for themselves.

I have my first follow up appointment scheduled for next Wednesday to check my blood work. So, we’ll see how I’m doing there. So, in the mean time, I’ll keep up my walks, naps, and continue to get stronger.

VW
“Ain’t No Mountain High Enough”

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)

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.

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!

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.

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

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.

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. 🙂

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

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!

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.

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!

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.

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.

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

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!