+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.

+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.

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.

+13 Rituxmab Infusion 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.

9.17.13 Bald

9.17.13 Bald, indent on forehead is from wearing my Rebel Cap, my head get’s cold.

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.
Just some mellow music to get me through the infusion.
A little Phillip Phillips

+12 – Whoop Whoop

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.

Numbers 09.16.13  Leuk 9.4

Numbers 09.16.13
Leuk 9.4

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.

Having a little party with my friends, Peanut M&M

Having a little party with my friends, Peanut M&M’s

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.
Whoop Whoop… this music was suggested by Brooke Slick, get that blood pumping.

+11 Freebird! I’m as free as a bird now!

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.

ISO door open

ISO door open

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. 🙂

Ole Miss Victory! Over University of TX.

Ole Miss Victory! Over University of TX.

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

+ 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.
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

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.


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.



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

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.


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