Kickin' MS with HSCT

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!

Sept. 19, 2013 – Day +15

No blood work today.

So, the Lion has been 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

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!

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.

Sept. 17, 2013 – +13

No blood work today, they are getting me ready for my day of Rituxmab Infusion that will begin at noon, this will kill off any rouge B cells missed with Chemo. If you want to read more about this treatment and side effects, help yourself, Google it, I did. But, since I’m about to go through it I try not to keep flogging an dead horse on the risks at this point. Why, no need to worry about something I can’t control, I just say jump on the horse and go for the ride. I made it this far, and I don’t plan on stopping.

So, my typical morning infusion now, a quick shower (doesn’t take long when you don’t have hair) and then a walk before I’m stuck in bed for 5+ hours.

Dr. F also came in to let me know they will be removing “Marvin” on the 20th, and that will be a nice freedom. We’ve become close over these weeks, but honestly he can be a pain in the neck. You can see him sticking out from the left side of my neck in this photo.
BALD ALERT!

Since I don’t check out until the 24th, this will give me some time to get out and walk and build up my strength before I get on the plane on the 25th. Actually going to be happy to have it, the legs are very weak, and this will help some. If only the food were better, wouldn’t be as bad. But, with my restrictions, it’s probably the safest place to recover a little more, before hitting the real world. I do plan on trying to walk outside the gates and explore the neighborhood a little, but not too far.
VW
Just some mellow music to get me through the infusion.
A little Phillip Phillips

Sept. 16, 2013 – +12

Number numbers are in for the day, and they are awesome! Leuk 9.4, great news. Normal is 4.0 – 10.00, so I’m totally in the zone.

So, Dr. F says, my Rituxmab Infusion will be scheduled for tomorrow. Great news, to get that last big thing out of the way. This will kill off any rouge B cells the Chemo didn’t already take care of. It takes about 5 hours for the infusion, so all afternoon. He said I can walk in the morning before they get started. Kristy’s having her’s now, so I’ll see how she does. Usually not too bad, but they like to monitor you for a few days to make sure you are ok. So, glad not waiting until next week and I’m ready to board that big bird to fly home. He also said he will start tapering my off steroids, so I will notice an increase in fatigue, just part of the prep to get home.

Met my new neighbor today, Keith Moore and his wife Tanya, from Canada. He’s now on the third floor, where the real magic happens. He’s room is between Kristy’s and mine, so hope he can keep it down in there. 🙂 They have three beautiful young sons, and it’s been nice for Tanya to be here getting him settled, but I’m sure she can’t wait to see her boys again. Keith is being left in very good hands.
VW
Whoop Whoop… this music was suggested by Brooke Slick, get that blood pumping.

Sept. 15, 2013 – +11

We’ll no blood test today, since I was in the normal yesterday, and it’s Sunday.

So, we are moving right along with slowly removing my restrictions today. A little strange, that a door that that has been my shield for the last 11 days, was left open this morning, between my room and the bathroom.

So, the restrictions continue to be lifted.
1. No one suited up to come see me today, they just wore mask and gloves.
2. ISO door open… very strange feeling.
3. My suitcase was returned
4. I can brush my teeth with a toothbrush… oh, this felt so good, you can’t imagine.
5. I can wear my own clothes, getting rid of the night gown will be nice. My nice jammies await me this evening.
6. I can walk out into the hallway, with a mask on today.
7. I can walk outside tomorrow, and will totally breath in the fresh air, even if it’s raining. I don’t care.
8. Dr. F came by and said I was doing wonderful, and he even noticed my walking was improving. This after being stuck in one room for 11 days, seems pretty big to me. Especially since I’ve had to walk barefooted the whole time, because I have to have the tightness across my feet to keep my foot drop from being so bad. So, even though many will bring crocks to wear in ISO, it was a safety issue for me personally, so I went without.

My symptoms:
On the subject of improvements, I’ve already seen a few. Remember, I have PPMS, so they had told me, “if we can stop the progression, be happy, no further promises.” And I was totally fine with that, otherwise I wouldn’t be here. And in the email from Dr. Fedorenko, he told me up front, only 50-60% chance the progression could even be stopped in my case, did I want to proceed? Of course I did, that was better than the big ZERO everyone else had given me. Then after my test he increased the percentages to 60-70% chance to stop progression, but no promise of gaining anything lost. Still, I was able to walk, and get around, though with lots of limitations, so let’s keep pushing forward. And I’m so glad I did.

1. Spasticity has been one of my major complaints, and it caused me a great deal of pain in the late afternoon and evenings. I tried Baclofen, but it just made me feel tired and I couldn’t function. So, my Chiropractor suggested I try Formula 303, a natural muscle relaxer with Magnesium and Valerian Root, and some other natural relaxers. Those things were a life saver and totally safe. Only complaint I could find was they smelled, and they do. I would take one in the late afternoon, then a couple before bed. Well, when I first arrived, that was still an issue and showed them to Dr. F to see if I could continue to take them along with the treatment. He said they were fine to take. Well, after a couple of days I no longer needed them, and haven’t taken them since. He ask me daily about the Spasticity and I have to tell him, I have none. Such a great feeling to be without that pain.

2 Foot drop -We’ll I haven’t be able to get out of this room in a while, but I can tell you that my drop foot is much better. I don’t seem to trip over or drag my right foot the way I’ve done over the past couple of years. The test will be when I actually can put on my shoes and walk around a bit to see how I’m doing there.

Those are the improvements I’ve noticed so far. At this point I’m physically very weak, and don’t want to push too hard and fall, so baby steps. I was all gung ho to jump in the shower after my clothes arrived, then after brushing my teeth and cleaning the dishes, I decided to blog and take a nap first. Sure would be embarrassing to fall in the shower after such a big day. So, I’ll finish this up and take a little rest and save the shower for the afternoon.

On a lighter note:
I was able to catch the end of the University of Mississippi (Ole Miss Rebels) game this morning when I woke up and it was a great win over UT. HOTTY TODDY REBELS! I have my cap back on today! Thomas I expect the appropriate flag to be flying at the house when I arrive on the 25th. 🙂
VW

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Today’s selection was suggested my a former HSCT Moscow Alum, Tammy. This is for all of us Tammy, Freebird!