MS Let it go – my HSCT journey in Moscow

Well the day is finally here, and we are officially going into isolation.  Not much to say really.  Yesterday they moved us up to the third floor and we brought all of our stuff with us.  The purpose there was so we could pack up all of our worldly goods, to be stored safely away from us, with all the germs they might have with them.  Where do these things get stored?  I have no idea. But I trust at the end it will all be returned.  All of my things fit into one suitcase and a carry-on bag.  Seems kind of small for a month long trip.

 

But as I have always said, this trip was not about fashion or tourism.  It was about treatment and comfort.  So my bag was packed with yoga pants and t-shirts, along with a warm jacket and hat.  And all the other necessities that I was told I might need along on this journey.  And yes, that did include food.

I did bring some food along.  The food here is VERY VERY different than what we are used to at home.  I brought a water bottle so I could mix some crystal light to get my water in.  I also brought instant Mac n Cheese as well as some ramen noodles.  I kept this stuff out while I was packing up so the doctor and staff would know what I had with me and there would be no surprises.  I did get some questioning on the ramen because the picture on the package had pictures of vegetables on it.  I laughed and told Anastasia, that was just a marketing ploy.  Trust me there are no dehydrated anything in there except noodles and powdered stock.  Almost got me in trouble.  I was also questioned about the Mac n Cheese but Dr. Federenko said it was ok

The one thing I find funny in here is that I am actually very very hungry!  I have been eating all the food they give me.  Well almost all of it.  I just can’t do the fish.  The little fishy must swim back to the ocean, and then I have a portion drink which the staff happily provides.  I’m still not crazy about tongue and that is on Wednesday, and you can rest assured, I did eat it once and once is enough.  That will be a ramen day for me for sure from this point on.

Well OK it’s not my birthday anymore,  but I did have one.  I actually had two.  Admittedly this is not the way I had expected spending any birthday and especially not my 50th.  But truly it was as good as it could possibly be.  Here is just a little something to help celebrate!

It was day +1 the day after I got my stem cells back, and we were in a holding pattern.  My sister came to see me, and help me get ready to pack up most of the things they would not be letting me keep in my isolation room.  That pretty much meant everything had to go.    But she did manage to bring in some goodies for me on my special day!

There were cards from home that made me cry.  Those got packed up so no pictures of them.  But they are packed in my bags,  and I will have them when isolation is over. We also had  some candy, and  cookies and other sweets that I was more than happy to share.  Of course it was also my last day to have any pizza so we had that,  and there was a cake which we also had some of as well.  All in all it really was a pretty good birthday as birthdays go.

I did spend a great deal of time on line reading birthday greeting from home.  You were all too generous in your thoughts and accolades.  I really am just thankful that you are out there cheering me on through my journey.  Some of you were really die hard birthday people.  I actually got to celebrate for three days,  because of the time change,  and confusion on some peoples parts.  But I’ll take what I can get.  I read every note and greeting.  I tried to respond to as many as possible, and to others at least acknowledge with a “like” if nothing else.

Next year will be entirely different.  When I get home, and Dan and I are well, we are going to have a rip roaring party that will not soon be forgotten.  He shaved his head in solidarity with me today.  There is a video on his page and on my page and on MS let it go.  I’ll have to pull that one back up when I find it.  It is a tear jerker for sure.  I am a lucky girl indeed!

It was difficult to be away from him on this special day, but I was very happy to have my sister here with me for one last day.  This sadly was our last day, since she left early the next morning to catch her flight home.  She is resting hopefully in Palm Springs now I hope.  Have a margarita for me babe!

I had always intended to make this trip alone.  Many have gone before me, and I’m sure there will be many who will come after, with no companion.  I have to say I really thought it was a huge burden, and a waste of her time to spend 17 days in Moscow doing nothing but looking after me.  She just sat in my room and comforted me when I needed it.  That is all a person can ask for.  This time for me is priceless, and I can never repay her for her kindness and generosity.  I love my big sister and cannot thank her enough.  I miss her every day.  Here is our last picture and the words she posted for me on Facebook.

 

I really don’t feel brave.  I have been scarred to death at the prospect of everything that has happened and is happening to me.  Had it not been for the warriors who have been before me and shared their stories, I would not be here today.  Thank you to those ladies.  You know who you are.  Someone did say to me once about bravery, that it was’t about being fearless.  It was about overcoming your fears and forging ahead.  Well if that is the case, I guess you can say these last two weeks I have been a little brave.

 

 

 

 

 

 

Well as is always a tradition here in Moscow, after patients get their stem cells back, there is a bit of a party.  It is the throwing of the ice that held our precious little cells for days until we were ready to get them back.  It is always a celebration but this one was especially nice, as I get to share this moment with my new Aussie friends!

First Dr. Federenko gives a little speech about how we are all family and a team and that we have success as a team.  Then he hands out “New Life” pins symbolized by the Iris a plant representing new life.  We each got one.  Then the big moment arrives and the frozen cylinder that has held our little stemmas for days is brought out and we got to toss it away!  It was great!

After throwing out the liquid nitrogen, we did have a bit of a party!  We had cake and gifts and our new life pins presented.

And of course no thank you would be complete from the Castaneda Clan without a little something from the happiest place on earth.  I wasn’t sure how this would go over, but both Dr. Federenko and Anastasia loved their new hats and shirts.  Mickey for Dr. F and Minnie Mouse for Anastasia!

We were allowed a few more minutes of frivolity but then it was back to our rooms to get ready to pack up our things for the next day as we were due to go into isolation!  This was a great day indeed.

As soon as I figure out the video element, I will update.  Thanks for following 🙂

Well the big day has finally come!  Today we get out stem cells back.  Now just one last time,  and I’ll give it a rest.  These are MY STEM CELLS!  They are not donor cells.  They are not baby or embryo cells.  They are mine.  They came from my bone barrow,  and today after 4 days of chemo to kill off the old immune system,  they are going back.  Well at least starting on their way back.  So its a big day for my team,  and we are all very excited about it.  The infusion should start some time around 12:00 or 1:00 pm.

The day started pretty normal.  My sister came after breakfast with a little bonus danish which is always delicious.  I was a little worried about eating it as I knew it had honey on it and I know honey is not good for babies.  Since I know that,  an I  was an immune system baby, so to speak, I really wasn’t sure if I should eat it.  So I asked Dr. Federenko what he thought,  and he said it was fine but no food after noon.  No problem.  So I ate the danish.  And it was tasty. But then my stomach got in a bit of a knot.  I think it was just one of those things where again, I had likely worked my self up to what I knew was going to be a big moment, and I was making too much of it.

It’s funny though, because I have seen this procedure done on other people thanks to video, so I pretty much knew what to expect.  I really didn’t think I was nervous.  Perhaps I was since it was now officially my turn.  I asked what I could wear and Dr. F said what ever I wanted, so I donned my DANSTRONG shirt of course!  I wanted Dan represented in this process even though he could not be here himself.  It gave me strength to get through the day!

So into the DANSTRONG shirt and into bed.  They came in to put heart monitors on me and blood pressure cuffs as well as pulse/oxygen monitoring equipment.  I felt ready to go.  My stomach was still a little upset, but I was ready to go nonetheless.  Then enters the frozen bin!  My sister got a shot of it before they took the stem cells out.  It was “steaming” actually freezing but looked like it was steaming.

Dr. Federenko enters the room and examines me to make sure everything is ready to go.  He asks me how I am feeling and tells me a little about what to expect.  He then holds up the bag of my stem cells to see.  It was really weird.  The last time I saw them, they were a heaping bag of read stuff.  Now it looked like a paper thin sheet of semi pink plastic.  Where did they all go?

No to worry, they were thawed and put into a series of giant syringes for re-infusion.  There were four total.  It sure looked like a whole lot more once they were thawed.  Since taking out the original neck catheter they used for stem cell collection and replacing it with what we affectionately call the octopus, it is much easier to administer meds and take blood.  The stem cels will be reinserted through one of these lines and any additional medication can be administered through any one of the others.  Works well and its much more comfortable then the prior line.

The time has come.  Dr. Federenko is in the room, Nikoli his assistant as well, along with a nurse and my sister.  LET’S GET THIS PARTY STARTED!   It starts with a shot of something to help my heart.  Then Nikoli starts the first infusion of stem cells.  He is joking with me that I might taste a tomato taste in my mouth while this is going on.  I say it tastes like Pizza Pie! All the while, I am hooked up to the machines and Dr. Federenko is asking how I am feeling.  He tells me that it is common for people to feel pressure in their chest or tightening in the chest.  I did not have that.  He is a persistent one though,  and he keeps asking.  I did say I felt warm and a little “thick” around the neck.

I will tell you that during this process they did have to stop one time although  my sister says twice to administer some atropine to raise my heart rate as it had dropped and to give me some blood pressure meds due to my blood pressure spiking.  It was no problem.  They did it and put my on oxygen and continued the process until it was done.  All in all it took about 10 or 15 minutes.

After everything was done, I was told to rest which I gladly did.  I was exhausted.  In about an hour our team would be having our new life celebration party and I was not going to miss that for the world!

So Chemo is done and it’s time to move.  Literally move on up.  I checked the compass on my phone and it turns out we are actually on the south side of the building on the third floor.  I so wanted to do the theme from the Jefferson’s and say we were moving to a deluxe apartment in the sky (on the east side).  Oh well.  We have arrived and we are now on the third floor which is the isolation floor.  Although we are not officially in isolation yet.

The ward here on the third floor is not very different than the second floor.  Different color.  Things here are white instead of brown like on the second floor.  Still one nurses station and a corridor of doors leading into patients rooms.  However, since this is isolation, the doors are closed.  There is still a lounge area where patients who are not insulation can hang out.  Stricter rules up here though.  Visitors must don masks, gowns, hair coverings and booties.  The only thing required on the second floor was booties.  Makes visits a bit more difficult as the guests do get a bit hot in that stuff.  But they are troopers.

We  also lost one of our team today.  Georgia, Bills wife had to return to Australia,  to tend to things at home.  She is such a sweet lady and a breath of fresh air.  She will keep you laughing all day and into the night!  She is such good company.  She will be missed but thankfully we have a new arrival to the support crew, Bill’s  friend Arthur has come to keep us all company till the end of this journey.  Safe travels Georgia!  We miss you and we love you!

Now life on the third floor is certainly different.  The rooms are smaller.  You have an entry room where there are some medical supplies and a microwave and refrigerator.  There is also a bathroom very similar to the one from the second floor.  Then there is the bed chamber, if you want to call it that.  It is quite small but really has everything you need.  It is about 10 feet by 12 feet.  One single bed and night table and a quarter round tale to eat and work at.   Really no frills up here,  but I must say it is clean as a whistle.  And even though we are not officially in isolation, they do clean it.

Since we were brought up prior to official isolation all of our stuff came up too.  Which was a bit odd since it was all packed.  I did take some time to take out some things I thought I might need.  They don’t let you keep much let me tell you!  Tomorrow we will get our stem cells back and that is a big deal.  That will happen sometime in the mid day and then there will be a “new life celebration” with cake and some gifts.  More to come on that in the next post.

So where the heck have I been for the last four days?!  Well I have been doing my chemo.  I fully intended to spend that time blogging.  Little did I know the little chemo drip machines do not have very long cords, and it was not very conducive to spending time at my desk.  So for most of the day I spent it in bed.

My daily routine did not change much.  I usually got up at 7 and showered and dressed.  Breakfast arrived around 9am.  Sometimes I ate.  Sometimes I did not.  That is just the way it goes.  I was very good about staying hydrated though.  Wanted to keep those veins open to receive the “good stuff”!  At around 10 o’clock, in rolled an older looking IV pole with places for 4 bottles.  Attached to this unit were two boxes that tubes went through to adjust the flow of the medicine.

Mind you I have four lines sticking out  of my neck.  Wouldn’t it make sense to just get on with this and get it done?  Oh no.  That is not how it is done.  I get hooked up to two bags the first shot.  When those are done, then another bag gets set up and when that is done the last bottle is set in motion.  That last one goes pretty fast.   All in all it lasts about 4-4.5 hours.

After the first day I was pretty tired at that point.  I figured that all those drugs combined with stem cell collection the day before I was pretty spent.  But the  day was not over.  At around 5 in rolled another IV stand with two bottles on it.  Again they did them one at a time.  Went pretty fast and then I was told they would see me again at 10 for my last one!  What?!  So all in all that first day I had 7 infusions.  This went on four days!

The thing about it also is that they keep feeding you.  I was so pumped up on steroids, chemo and all the other fluids, quite frankly there was no hunger or room for food!  They would give you a look, but really can’t they see you are laying there with tubes going into you all day long?  Really who is interested in eating?  Not me.  I did manage to have a little and had some protein shakes the nurses brought in.  I thought that was at least doing my part.

Also, part of full disclosure, getting all that fluid in, remember it also has to come out.  So you do spend quite a bit of time in the bathroom. Seems like every hour at least.  That contributed sleepless nights, and some doozie drug/chemo induced dreams .  They were really quite strange.  I wasn’t sorry to wake from those.  Thankfully those are done along with the chemo.

A new group arrived today and they took our old rooms.  We now have officially moved to the third floor where the isolation rooms are.  Although we are not officially in isolation yet, we will be in a few days.  So I got settled in a bit.  put out what little they will let me keep in here which is not much.

Tomorrow is a BIG DAY for us!  We get our stem cells back!  They have been sitting on ice and being treated to rid them of all the bad B and T cells that might present problems.  But tomorrow they will be thawed and re-infuesed to help build my new immune system.  After they do the re-infusion, there is a little celebration called our new life birthday, and we get to dump out the ice that held our stem cells.  We are all really excited for that one and I will be sure to post pictures and possibly video!

After four days of steroids and twice daily stem cell stimulation shots, the big day was finally here.  It was Stem Cell Collection Day!  When we woke up, I looked outside my door and saw a machine sitting there ready and waiting to go.  Dr. Federenko said it was just like a dialysis machine and it was made in the U.S.A.  Good enough for me.

So here’s what will happen, they will hook me up to this machine through the central line they have inserted into my neck.  It will run for about 5 hours and it will cycle my blood through, and separate out my stem cells from the blood and return the blood to my body.  This process will happen twice, I’m told.

The goal for today to to get 2 million stem cells per kg. of body weight.  I won’t go into exact numbers for obvious reasons.  A lady has to have some secrets right?  There are three  of us doing stem cell collection today,  and I’m hoping we all get our stem cells in one shot.  I won’t be terribly upset if I don’t get them all.  Its not uncommon for people to take two days and sometimes even three days.

First thing, Dr. Federenko came in and set up the machine.  He organized all the tubing and made sure the machine was in working order.  Then Nikolai came in and hooked me up and got things going.  Incidentally he was the same guy who did my hair cut the day before.

There is a very short cord on this machine so there really is nothing much for any of us to do while this process is going on except lie in bed.  Which makes going to the bathroom a bit of a challenge.  You really have two choices.  You can either hold it or you can use the diaper they make you wear.  Yes they give you a diaper.  No secrets here.  I have always said this would be full disclosure.  But for the record, I managed to hold it.  I think the key here was I drank nothing in the morning and didn’t even have breakfast.  I waited on all of that until the process was done.  It wasn’t easy as it actually took 6 hours rather than the 5 I was told.  But I made it.  Yay for me!

When everything was said and done,  Nikolai came and started to break down the machine.  There was one little bag of what he said were my stem cells.  It didn’t look like much to me and I was a bit worried,  but there was nothing I could do about it at this point. All signs had pointed to good collection.  I had bone pain the prior three nights which said to me that stem cels were moving through the bones to the bloodstream.  But still that little bag made me a little nervous.  My friends said they would wait a day for me if I didn’t make it,  and that was a nice gesture.

Now we just had to wait.  After they collect the stem cells, they send them off to two different labs to confirm numbers.  I was so tired that all I wanted to do was sleep.  My sister got me a little fan at the Russian version of our 99 cent store and that helped me take a nap as I was really warm.  It seemed like no time had passed when Dr. Federenko came in to tell me that not only had I collected enough stem cells, my entire team made their numbers as well!  We would all be starting Chemotherapy tomorrow!

One last thing which was a bonus for getting all our stem cels is that we got our central lines removed!  Sounds great and it was.  Only thing is we get new lines the next day for the chemo.  But that is alright.  The new lines are thinner and more flexible and hopefully more comfortable.  I did insist on seeing this thing after it was removed though.  It was HUGE!!!

I was very happy with 2.1 million stem cells per kg.  My friend Kim got 2.4 million and that bastard Bill got 4.8 million!  He is an over achiever but we love that Aussie Bloke!  Good for all of us.  And it’s the best 3rd place finish I have ever had.  Ill take it!    We have all made it, and now move on the the heart of the matter, Chemotherapy.  As they say, Chemo is the Key.  Chemotherapy will be killing off the bad parts of our immune system and the stem cells simply help us to rebuild a new one without all the bad stuff.  Here’s looking forward to Chemo!

After our day 7 infusion of steroids we had our pic line removed.  That was a huge relief let me tell you!  It really seemed to get in the way and was extremely itchy.  It was removed because they were getting ready to insert a vas catheter–central line into our jugular vein.  That would be used for stem cell collection and it could also be used for our last doses of steroids as well.

Thinking about getting this central line has weighed heavily on my mind for months.  I have heard stories about it,  and seen pictures.  All I really knew was, they would be inserting a very long tube into my  neck vein while I was awake!  I was terrified!  As the morning approached I prayed that I might go first.  I really didn’t want to hear from other people how good or bad the experience was.  Sadly my wishes did not come true.  There was a group of three of us and I was last.

Bill went down first, and was gone for quite a while, Almost an hour I would say.  While he was gone they took my friend Kim.  Just then, Bill came back and was started telling me  how horrible it was.  But it was my time to go now, so I left.  I hugged my sister and friends,  and left the room with the nurse.  She walked me downstairs to the room where the procedure would be done.  Unfortunately, they were not ready for me yet, so I waited in the hallway.

This was probably the worst possible thing that could have happened to me.  Now I am standing there with nothing but my thoughts and I started freaking out a bit.  I started breathing hard and I actually started to cry.  I don’t really know why.  I don’t usually act like that.  For any of you who know me, you know that I am a pretty tough cookie and you will almost never see a reaction like that from me ever.

The nurse was so sweet.  Again, she spoke no english, but it was clear what was going on with me.  She hugged me and kissed me on the cheek.  She spoke to me in russian and reassured me that it would be alright.  At this point they opened the door,  and had me come in.  The table they use for the procedure was very skinny but I laid down and put my arms to the sides.

At this point, they are doing all kinds of things in the room but nothing to me.  Again, my mind had a chance to wonder and I started hyperventilating again and also started to cry.  I felt like such an idiot,  but just really could not control it.  My main doctor, Dr. Federenko came in to check on me and asked if I was ok.  I told him I was (through the tears), and he asked me how many valium I had taken.  I held up two fingers. Not sure if that was too much or not enough.

As soon as the doctors actually started to prep me for the procedure, I completely calmed down.  All it took was them putting the draping on me and starting to clean my neck for the incision and I was totally calm.  Very strange.  The procedure really wasn’t bad at all.  It was all just me making more of it than it was.  They did an ultrasound of the neck to identify the vein, then I felt a very small prick of a needle, some pressure and the line was in!  Easy peasy!  Ok perhaps with a little added drama from me.  But it was done and I was ready for the next day of stem cell collection.

When I got back to my room, I was given my daily dose of steroids through my new central line which was actually really great.  Although it was a very stiff line, it was wide open and allowed all that medicine to get in very quickly.  They were also able to give us some pain medication for the pain in the neck we now had.

The second part of our day was all about “LETTING IT GO”  our hair that is!  Normally patients don’t get their heads shaved until they start chemo.  One of our group just got the idea that we should do it a bit early so we would not have to deal with hair and the pipe sticking out of our necks.  So we made a party of it.  Again I went last.  It was fun to see the others go.

Bill really didn’t have much hair to shave so it was no big deal for him.  My friend Kim, really  had fun with it.  She had her hair cut into a mohawk prior to the final shave.  I went last and he just cut it all off into a pile on the floor.  The guy who did our hair cuts was very nice and a lot of fun.  He got us all through what could have been a bit of a dramatic time.

A lot of people thought I was going to be devastated to loose my hair.  Im really not.  I have so many issues in my life right now, this is really so minor in comparison.  I have come to find that it frees up time and energy.  I don’t need to deal with shampoo, hair dryers, brushes or any styling products.  My head feels cool and breezy.  I actually really love it.

Now don’t get me wrong, you probably won’t see me galavanting about with my head alfresco.  But I’m not all broken up about it.  Dan even says he likes it.  He says it reminds him of Demi Moore in GI Jane.  He must really love me.  Ill take it.

Well here it is day three of stem cel stimulation and steroids.  We got our shots last night at 11 pm and 3 am.  Then the steroid jars came in at around 10 in the morning.  By 11 we were done and had the rest of the day to ourselves to do whatever we wanted.   After our steroid infusion today, they removed the pic line, since we will have our vas catheter inserted into our jugular vein tomorrow.  We will get our last dose of steroids through that.  They will also use it for stem cell collection.  This would be our last day of freedom so we wanted to make the most of it.

I was still having issues with shortness of breath and chest tightening from the steroids,  and I was not sure I would even be able to go out.  My sister suggested we go it alone and let our new found friends do their own thing.  This way, I could take it as slowly as I needed and I would be able to get out.  I had really only one or two goals for the day.  I wanted to go to Red Square and see St. Basils Cathedral and the Kremlin.  If I was still up to it, I wanted to go to the local flea market and look for the obligatory souvenirs for people back home.

We had been given instructions on how the metro worked and hopped on.  Some stations had escalators and some did not.  The ones with escalators made life much easier for me.  When we got somewhere that required stair climbing, I had to take it very slow and take breaks.  I looked like an old lady but It really was the only way I was going to make it to my goals for the day.

We made it Red Square and it really was quite simple, once you figure out the Metro.  The square itself is not as big as I had imagined.  My main objective was to se St. Basils Cathedral and take some photos.  Of course the place was mobbed with people but we still got a decent shot.  We also spent some time taking pictures of the various buildings and churches inside the square.  By the way, there is a shopping mall inside Red Square!  Imagine that!  We did go inside just to be able to say we went.  Very fancy shops and all well above my price range, but fun to see.  They even had some historical displays we had a chance to see.  Oh yes, we were able to get some ice cream.  Bonus!

After Red Square we hopped back on the Metro and headed back toward my sisters hotel.  She just happens to be staying very near the market place we wanted to go.  We made our way in slowly as I was starting to have more shortness of breath, but we made it.  It reminded me of Dukes Lane in Oahu.  Lots of carts loaded with touristy things but you know that you have to get something.  My goal was to look at everything and then decide.  This turned out to not be a great plan as one of the things I really wanted sold before I got back.  But it’s alright, there were plenty of other nice things I was able to get.  Plus  my sister is going back on a mission later in the week to see what she can find.

After the market, we stopped back by my sisters hotel and got a quick bite and then headed back to the tram so I could get back to the hospital early and get some rest.  The walk to the tram and from the tram to the hospital was difficult but I made it.  Had to take a couple of stops and rest, but I did make it.  Then back to my room got some meds and tried to sleep.  At least until the 11pm and 3am shots came.  Oh well.  Just one more day of that nonsense.

Tomorrow is the Vas Catheter and Head shave.  I really am ready to “Let it go!” when it comes to the head shave.  It’s going to fall out anyway after chemo, so why not just get on with it.  What worries me is that Damn Catheter.  I am simply scared to death about the entire process.  But I will fill you all in on that tomorrow.  Stay tuned.  Things are starting to get REAL!

Now that I have been accepted for treatment, my body needs to get ready for what is coming.  The key to this treatment is the chemotherapy.  Chemotherapy will be used to kill off my immune system.  Not the entire immune system, just the parts with the MS will be killed off.  But before we do that, we have to prepare for the recovery.  That is where the stem cells come in.  Now before anyone gets all worked up or  starts to form some kind of boycott, let me just say, this has absolutely nothing to do with embryos or babies.  These are MY STEM CELLS.  Everyone has them in their body.   The stem cells we are using are in my bone marrow.

There are various ways stem cells can be extracted.  In the old days, they would break bones and suck out the marrow.  Modern medicine is not so barbaric.  Today we use drugs to make the body do amazing things, and this is how we get the stem cells.  Over the past three days, I have been getting G-CSF stimulation injections twice daily.  The full name for G-CSF is granulocyte colony stimulating factor. This medicine will be injected subcutaneously (under the skin.  In my case the shoulder) and will stimulate the stem cells to move from the bone marrow through the bones and into the bloodstream.  There are a series of injections.  First injection  at 11 p.m. and second at 3 a.m.

The modern way to extract stem cells is much less painful.  That is not to say there is no pain.  Let’s not forget, those little stem cells are moving through my bones.  That can and many times does result in bone pain.  For me, the first two days there were no problem.  However, when I woke up this morning on day 3 of 4 for the stimulation injections, my back was in excruciating pain.  I let the nurse know and she came in with a shot of something and within 20 minutes, the pain was gone!  I have gone all day and feel pretty good as far as the bone pain, but it is creeping back so I will ask for something when the nurse comes around.

In addition to the stem cel stimulation, I am also being administered daily doses of IV steroids.  We get the IV drip sometime between 10 and 11 in the morning and it only takes about 30 minutes.  We had a pic line inserted on the first day to make this process easier.  I have to be honest, that line bugged the heck out of me.  They left it in and it was poking me and itching like crazy.  And although we have four days of this process, the pic line came out today after the 3rd infusion.  That is because tomorrow they will insert a gigantic catheter in my neck to collect the stem cels and we will just use that catheter to get the last dose of steroids in.  More on that later.

 

So if you ask people  their opinion on MS treatment and steroids you would get a wide range of responses.  Some people rave about the steroid treatments.  They can make you feel great, give you lots of energy, reduce inflammation and as a result reduce MS symptoms.  For me that has not been my experience.  Steroids for me have certainly not fallen into the category of performance enhancing anything.  What I have found in the past and actually forgotten until this week, is that they can knock you on your butt!

After the first infusion, We did venture out of the hospital grounds for a little supply operation.  A group of us went and got what we needed.  After stopping at the market, some of the group wanted to go out to dinner,  but I was done.  I was short of breath and my chest was getting a bit tight.  So I went back to the hospital with one of the guys from our group.

Yesterday (day 2 of steroids) we ventured out again.  The walk from the hospital to the tram nearly made me pass out.  My lungs were burning and my chest got tight again.  I almost turned back.  I probably should have.  Instead I slowed things down and tried to rest.  Once we got on the tram, I got about a 10 minute break which allowed me to rest and recover.

My sister and I then met up with a friend of the family who drove us around Moscow, and told us the history and showed us the landmarks.  She also gave us some maps and explained how the Metro worked.  But when we got back to my sisters hotel and had dinner, it was getting late and I had to get back to the hospital.  If I’m not back by 9pm, I will get locked out.

We had dinner with people from our group so 3 of us  started to make our way back to the tram.  Unfortunately a normal gait for me now was enough for my chest to tighten up and my lungs to feel like they were on fire.  I had to slow it down.  One of my friends stayed with  me and the other went ahead to tell the guard that two were still coming and please leave the gate open.  We made it back with 10 minutes to spare.

When the nurse came to check on my and I told her of my issues.  Thank goodness for Google translate.  She immediately called my doctor (its now 9:00 pm).  She told him what was going on and then put me on the phone.  The doctor asked me how I was doing now that I was resting,  and I told him I was much better.  He told me to rest and take it easy.  They took my blood pressure which was a little high and gave me some medicine for that.

My nurse last night was like an angel.  She came back to check on me and shared pictures of her family and wedding.  I also shared pictures of my family and my wedding.  It was a very intense bonding moment even though we did not speak the same language.  It didn’t matter.  We had the pictures to tell our stories.  We ended with hugs and kisses on the cheeks.  That is the european way after all.  It was really beautiful.  It is just one of the things I love about this place.  Everyone treats you like family.

I settled into bed at about 10 pm knowing that shots were coming in about an hour.  They did and I was actually able to get back to sleep even after the 3am shots.  I must be adjusting to the time.  Our plan for tomorrow is to take the Metro to Red Square and then back to the palace marketplace to do some souvenir shopping.  Not sure how that is going to workout.  I will have to take it slow….very very slow.