MS Let it go – my HSCT journey in Moscow

Things have been going along very well for me and my recovery.  I really feel pretty darn good.  If it were not for the fact that I am taking medication to help my new immune system,  I might forget that I had such a major treatment just a few months ago.  Well that is until Thanksgiving night.

As I was preparing for the evening meal, I realized that I had been itching all day long.  It really was quite annoying.  But there was a schedule to stick to, so I didn’t really have time to think about it.  Sadly our Thanksgiving plans did not go as we had hoped.  My dads wheelchair transport fell through, and he was not able to join us.  So dinner was put on hold, and the side dishes which had  not been put in the oven yet, started to bake.  Dan was the super hero of the night.  He called a friend who had their dinner all ready, and  picked up some turkey and all the fixings, and took them to my dad at his nursing home.  I was not able to go with him due to my still young immune system.

So why am I telling you all of this.  The delay in dinner allowed me time to actually rest.  I mean really rest.  Take a load off.  Sit on the couch and breathe.  It was at this point I realized I had been itching all day long.  My sister asked if I was using a new soap or something.  I thought about it, and there was a liquid soap in the shower I had used the night before.  It was new.  Then I thought about the possibility of the laundry detergent.  But that was the same old stuff we always used.  I just couldn’t figure it out.  So we went on with our night.

Dan got back from my Dads, and we finally had our dinner.  My sister stayed for a while but then she left and we turned in to go to sleep.  I settled into my nightly routine, took  my medication, brushed my teeth and got into bed.  It took only a few minutes until that annoying itch went into hyperdrive!  I could hardly stand it.  It was at this point I was sure it was my medication that was making me itch.

While I was in Russia I took a wide variety of pills.  One in particular was Bactrim.    Bacterium  is actually a combination antibiotic to treat bacterial infections.  I was taking this drug three times a day while I was being treated.  It is given to us as a precaution, since our immune systems are newly forming.  Dr. Federenko even sent us home with a months supply.  When I saw my hematologist I told him I was taking it. Since I did not have it with me, he was concerned it was not a high enough dose, so he gave me a prescription for the dose he thought I should have.

So I picked up that prescription and started taking it twice daily for a couple of weeks with no problem.  The next visit I had with the doctor, I actually took my medication with me and they took at look at it.  The nurse realized that the prescription for the Bactrim was supposed to be twice a day but only two days a week as opposed to every day as I had been taking it.  They made the change and I adjusted my dosage.  I was to take this drug twice a week on Mondays and Thursdays.  Something about that change triggered my allergic reaction.

Of course it was Thanksgiving weekend and I didn’t even think to call the doctor, so I waited until Monday.  And yes on Monday I took the pill in the morning and yes it made me itch.  I called my doctors nurse, and told her about what was going on.  I was sure it was the Bactrim as I only had the problem on the days I took it.  She agreed and told me it was actually a very common side effect.  She changed my mediation.  She told me the new medication was a liquid drug called Atovaquone.  She said it tasted bad and I would have to take it every day as opposed to the twice a week with Bactrim.  “No problem”, I said.  “Whatever I have to do to stay healthy”.

 

Well she was right it tastes awful. It’s like every horrible liquid medicine we took as kids combined and multiplied. And just to make things easier, it looks like a very thick bright yellow paint. It really is awful but I do as I’m told, and I go along with the program. This drug is actually very important. One of the big fears with post HSCT patients is the possibility of getting Pneumonia. Bacterium and Atovaquone help to prevent this. So it’s a good thing even if it tastes bad.

On the upside, I’m not itching anymore and that is a relief.  I am now focusing on rehab and building muscle tone, so I can go back to work in better shape than when I left.  These medicinal precautions will continue until I am day +90, which is just about one more month.  I can do anything for a month right?

I know I have been absent for a while since I got home,  and I really have no excuse.  It’s not like I have an overwhelming social calendar.  I am still technically on lock down, but I’m home and that is what counts!  It is great to be home even if I can’t do much or go out to many places.  Yet…….

For your viewing pleasure today, “Home  Sweet Home” by Motley Crue,  from the mid 1980’s back when the heavy metal groups did those “power ballads”.  And yes believe it or not,  there was a period of time when I did enjoy a little heavy metal music.  Now that  is something you probably didn’t know about me.  A little head banging is good for the soul every now and then.

 

So I made it back.  It was a long road and long journey but well worth it.  It all started on September 29th,  at about 5:30 in the morning.  That is when my driver,  Alexey arrived to take me to the airport.  It was a bit odd to be leaving at this early hour.  No one was up,  and I had said all my good byes the day before.  But it was time to go and my friend Barbie had arrived,  so it was time to go.  I did run to the nurses office to say good bye to one of the nurses.  She did give me a hug and yes, I did cry just a little.

Alexey got us to the airport in what seemed like no time. When I mentioned that, he  laughed and  pointed out that it was because I had slept the whole way.  He was very kind and took us into the terminal,  and got us checked into our flight.  He also made sure they had a wheelchair for me.  He stayed with us until the wheelchair arrived.  Wheelchair?  Yes, I used a wheelchair and I have to admit I really did need it.  After all,  I did just have hight dose chemotherapy and a stem cell transplant.  I was a bit worn down,  and it did seem a bit more difficult to get around.

Since we did get to the airport early, we got to go sit in the Singapore Air lounge. That I have to admit was very nice.  My wheelchair escort left us there and promised to be back in time to get us for our flight.   The lounge provided all the food and drink you could possibly want.  Sadly I was not able to enjoy any of the food they offered in the lounge, but Barbie could.  I did have a coke.  It was at this point that I realized that Barbie really did come prepared to take care of me all of the way home.  She had brought her own paper plates, plastic glasses and utensils and straws.  She didn’t trust me eating anything off of dishes someone else had touched that might be germy.

As you can see from the photo, Barbie brought along straws, plates and all the supplies a person with no immune system might need to avoid germs!  The Coke seemed like a great idea,  but I have to admit after 30 days of chemotherapy and all the other drugs they gave me, it really didn’t taste very good at all.  I am told this might last a couple of months.  So for now I am  enjoying spicier foods because that is all that really tastes good to me.

When it came time for us to go to the plane, my wheelchair escort did in fact come back.  He wheeled me to the security area, where I assumed they would have me get out of the chair and go through either the metal detector or scanner.  I was wrong about that.  When I tried to get up at the security check point, about four people all started waving their hands at me.  Apparently they wanted me to stay put in my chair.  They wheeled me through the metal detector with my purse and carry on bag.  All they did was “pat down” my legs.  And lets just be clear, this “pat down” really was someone just brushing their hands down both legs while I held my bag in my lap.  Thats it.  Then they wheeled me to the plane.  The person at the gate took my boarding pass and I was wheeled right on.  When we got to the door they wanted to see my boarding pass stub which I could not find.  They let me on anyway.  I got to my seat and that was it.

So I was a little surprised at what I thought was pretty lax security.  They didn’t put either my carry-on or my purse through the x-ray, they didn’t even ask if I could stand for the scanner. So I got onto this plane with nothing more then getting my legs brushed.  I was really surprised.  Oh and since Barbie was with me, She got through security pretty much the same as I did.   We both settled into our seats and prepared for what was going to be a long flight.

I have to admit I do love Singapore Airlines.  And I booked business class for both of us because I thought it was important to be able to sleep, and I thought there would be fewer kids there.  It’s not that I don’t like kids.  I just know they have a tendency to be sick a lot and I was trying to be cautious.  As it turns out, this business class section was about half kids under the age of 5.  The joke was on me!  Oh well, I tried to just sleep through it.  Although the business class does have chairs that convert into beds, it was not what I was expecting.  They have to come “convert” your chair for you and it feels like plywood with very thin pad like you would find on a changing table.  I felt like I was in a play pen.  I did manage to sleep a little and it did help pass the time until we got to Houston.

Finally we landed in Houston and my wheelchair was waiting for me when we landed.    That was nice and It allowed us to get off the plane early and through  customs and immigration very quickly.  This girl who was pushing me whisked us through the airport.  We got to use “crew” lines which basically meant no waiting.  When we got to immigration,   she helped us with the machines and got us to someone with no line.  It was great.  I have to say, there would have been a lot of walking and had it not been for that chair, I never would have made it.  After we got through immigration and customs, we gave our bags to the airline for our next flight and made our way to our gate.

We had a 5 hour layover in Houston.  I planned it that way since I had no idea how long it would take to get through customs and immigration.  I figured worst case scenario we could spend time in the United lounge.  When we landed, I found out my friend Bob, who works for one of the airlines, was at the airport, and was waiting for us at our gate.  It was such a nice surprise, and fantastic welcome home to the United States!  We chatted for a bit, and then had lunch at one of the airport restaurants.  I know what you are thinking, and yes I did eat.  But I made sure they cooked it well done and everything was just fine.

It was so nice of Bob to come welcome us back.  He really didn’t have anything else going on in Houston, but he wanted to be there to welcome us back.   I have known him for over 30 years, and it was really nice to see a friendly face when I got off the plane.  After lunch we did get a chance to talk for a bit, but then it was time for us to get on our plane,  and for Bob to get home.  Our final flight to Los Angeles was the shortest about 3 hours.

When we got to Los Angeles, there was no wheelchair waiting,  so we waited on the plane until it got there.  It took a while but finally arrived.  I wasn’t too worried but Barbie was worried about our luggage. When we got to baggage claim,  all of the  luggage had already come down and there was a guy getting ready to take unclaimed bags.  So I guess we made it just in time.  When we had our bags, I called Dan who was already on his way.  We went outside to the curb and he was there within just a few minutes.

It was so great to see Dan.  I gave him a great big hug and kiss and we jumped into the car before the airport police came and yelled at us,  When I got home I got to see all of the things Dan had done to make this house ready for me.  He had two cleaning crews come in and get it in top notch shape and he hired a house keeper (yippee!).  The house looked amazing and I was thrilled.  But there was also a little surprise waiting for me that only my Disney friends will get right away.  This really was a complete surprise to me!

I love this gargoyle and I know Dan went to a lot of trouble to get it for me.  It turns out it was offered for sale but there were some problems.  Dan was persistent and made sure he got one for me.  That is just one of the many reasons I love that man!  It really is good to be home.  I am getting stronger every day.  I can have visitors, if you are not sick.  But I do hope to get out more very soon.  Home really is great.  Remember always, there really is no place like home!

 

 

Is it actually possible that as a girl who grew up in the 1980’s, I didn’t truly appreciate how much effort those boys put into making their hair look so good?  They sure were pretty, and their hair was flawless!  Well here, we are in the home stretch again so to speak, and I thought this 1986 song by Eruope, “The final countdown” was especially appropriate as I start to gather my things and get on home.  It was been a long ride, but a good one.  Thank you to all of you who have joined me on this journey.  Click on the Youtube link to see the video.  Enjoy.  🙂

http://www.msletitgo.com

So tomorrow is Wednesday!  I go home on Thursday at zero dark thirty!  So really if you wanted to stretch it, I kind of leave tomorrow!  Well that is under some new fangled twisted version of common core math I’m sure.  Either way I am wheels up at 10:30am on Thursday October 29th headed back to California!  I can’t wait to see my family and friends.

That’s not to say there is not still much to do.  There actually is.  Now that my friend Barbie is here, I have to make sure she gets a chance to see the city, and get some of her things done before we leave.  My big objective for tomorrow is to completely unpack and repack.  I will be leaving behind anything I find unnecessary to my trip home.  I did bring some things that I probably could have done without.  I also did not bring some things that I could desperately needed.  I do have a small stash of food that I am happy to donate to anyone who will have it.  Some patients here do live on chips. I just can’t do it.  Although I think I am down about 12 pounds since I have arrived, trust me, it is not a conscious effort.  I have actually been trying to eat what they have been giving me.  I figure they know what they are doing and are trying to give me nutritious food.  So I eat it.  With the exception of the tongue.  But at least I did try it!

So yes, tomorrow I will dump all of my things onto my bed, and repack my suitcase in an organized fashion as possible.  I really don’t think it will take me very long.  Although one of the things I am having my friend Barbie do, is to go to the local flea market.  It is a really great little place to get gifts for people back home.   I hope she doesn’t get too carried away.  I think space wise, we will be fine.

Tomorrow will also be my last consultation with Dr.Federenko.  We will go over my history again.  We will also talk about my treatment progress and how he feels I am doing.  I see him every day and he always has very encouraging things to say, I am hoping for more of the same.  I have to admit, it’s a little weird to be the last of me team here in Moscow.  Bill left yesterday and Kim left today.  Thankfully, I had Barbie here to keep me company.  But I am just about to bust out of this place anyway.

The last couple of nights I have been awoke with extreme bone bone to the point I didn’t even know what it was. I took a little precaution tonight. I took the shot of meds now, and if I have problems later, I will take some pills. Lets just say I hope the shot does the trick. I don’t think I can sleep through that again. And I really hate being the guy who buzzez at 3am. I really do. but after the last two nights, trust me I will hit that buzzer if I have to.  Trust me!

From my previous  talks with Dr. Federenko, He feels that I am a good candidate for this procedure of he would not have accepted me.  The new information I did not have prior to coming here was that I had two new lesions on my spine that were now shown in previous MRI’s within the last year.  That alone, he said made me a good candidate.  He felt I would have a complete beefiet from this treatment.  We will talk tomorrow.  And although one can never predict the future, I’m holding on to that thought and I and ready to leave Moscow and “Let it all Go!”

 

So from reading my posts, you may have gotten the idea that the last couple of days have been rough.  That would be an understatement!  I had some pretty excruciating bone pain between day 11 and 12. I really didn’t know what was going on.  I had never felt so much pain in my ligr.  Add to that the fact that it is 3:00 in the morning and you don’t want to be the guy to hit the buzzer.  It was awful.  I suffered for a bout an hour and at 4:00 I needed something.  Two nurses ran into the room.  Mind you they don’t speak English.  But I think the look on my face along with how I said the word pain, they got the idea.  I got three syringes of something that I must say, did the trick in no time and allowed me to sleep.

So now what?  I am so fatigued, and all I want to do is sleep.  I have never felt like this before in my life.  Dr. Federenko insists that is my body weaning itself off  the steroids.   I know he is right, it doesn’t make the process any easier.  So for now what can a girl do?  Well, this girl will rest.  I say this because once Barbie arrives, there will be no rest for the weary!  She is my best friend, and I am so lucky to have her come and bring me home.  Words cannot express the love and gratitude I have for this woman!

So I got a text in the late afternoon that her plane had arrived, and she was at her hotel.  Now the tough part was getting her into the hosptial.  This place is like a fortress.  Seriously, armed guards and it was Sunday.  But we did manage to get a hold of some paper work and we did get her inside.  And the nicest thing was that all she cared about was to make sure I was ok.  She had brought a suitcase filled with some necessities I had asked for, and some goodies for me.  It truly was like Christmas.  The most important thing was moisturizer!  How do you forget moisturizer?  I must have used half of that tube she brought.  I now have very soft arms and feet!  I could not be happier.  She also brought me some hats and wigs!  I will have fun trying those out in the upcoming weeks

And believe it or not, Barbie brought presents for my team as well!  So last night we all got a chance to open gifts!  She brought each “Super Hero” T-shirts

 

and she made each one of us capes to wear with them!  It was so thoughtful and so fun!  I’m not sure what Dr. Frderenko made of all this fuss, but my team sure enjoyed it!

And of course she brought some extra special things for me including caps, hats, mouse ears and of course some hair!  We will have fun trying these new things out in the coming weeks!

The saddest part of today was saying goodbye.  One of our team members was due to go home today.  Bill and Arthur left early this morning , but not before a little fun and games.  They are both fabulous Aussie blokes, and will be missed dearly.  Safe travels my friends.    It has been an amazing experience to spend these last 30 days with you, and I know you are going home a better and healthier man.  Thank you for letting us join you on your journey!  Kim follows home tomorrow, and I on Thursday.

Don’t worry, we aren’t done yet.  I still have three days.  Surely you will hear more in the next three days!  Keep on reading!

 

 

 

So yesterday was a big day!  We got our big dose of Rituximab!  That was supposed to kill of what little B cells might still be lurking in our immune systems, reaking havoc!  So we had the infusion, and it was a long one! I think I mentioned that it kicked my butt, and I spent most of the day sleeping and napping.  I certainly did not think I would have any problem in the sleep department last night at all.  In fact, I expected to wake up this morning refreshed, and ready to take on the world! Well, that might have been a bit premature.

Like clockwork, this morning I awoke to an infusion of steroids.  I also had some pretty severe bone pain, so I asked for some pain killers and was given them immediately.  That seemed to do the trick!   The only problem I could see was that I was exhausted and could barely move.  I mean seriously, I could barely walk.  I was doing the “furniture surfing” thing,  just to keep from falling over.  I was using grab bars in the bathroom and shower.  It was so crazy.  When Dr. Federenko came to check on me, I mentioned it to him.

He explained that they were reducing our steroid infusions and that could be the reason for the weakness.  Apparently it is not uncommon.  My other team members seem to be having similar experiences.  Wow, just not what I expected.

So this is how my day pretty much went.  Had breadfast.  Took nap.  Had shower and got dressed. Took a nap.  Had second breakfast.  Took a nap.  Are you sensing a theme?  Everything I do makes me just so tired.  So I nap.  I guess that is a good thing.  I am in a hospital after all.  It is where I should be if I am not feeling great.  And no,  I did not get outside today.  Dr. Federenko recommended just walking the ward, which I have.  But tomorrow, I am getting outside if it’s the last thing I do!

There is a lot to look forward to tomorrow!   My dear friend Barbie is flying in from Florida to prepare to take me home!  The original plan was that Dan was going to bring me home.  But with his surgery happening so close in time, it just was not practical.  I didn’t want to impose on Barbie,  but she jumped at the chance and she is up to the task!

She is my best friend.  We have known each other or about 8 years.  And yes, I know it is shocking to those who know me, we met at Walt Disney World, while on vacation.  It was pretty funny when I introduced her to Dan.  I said to him, “she is exactly like me!….Only better!”  He just laughed and rolled his eyes.  And pretty much since that trip, not a day has gone by that we don’t at least talk on the phone.  I am lucky to call her friend.

So no, I’m not going home tomorrow.  But she arrives tomorrow, and that will boost my spirits immensely.  Also, the last of the central line, “my octopus” will come out!  Now, don’t get me wrong, I am totally over,  the whole line in the neck thing.  It has actually turned out to be a bit of a blessing.  They can come get blood from me without waking me. They can give me meds through it.  They can give me all the infusions I need as well.  But it is starting to get into the way, to I guess its time for it to go!  Im good with that.

So yes, today was a bi of a bad day.  But now its time to brush myself up and get ready for a new day.  A new day with a healthy immune system and big smiles coming my way!

 

Well, things are winding down here.  Not done with treatment, but things are really coming together.  I am out out of isolation since yesterday, and and today is the day for my 5 hour infusion of Rituximab. What is that you ask?  Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders like Multiple Sclerosis.

I actually had a really great night sleep.  Not sure why.  There were some small fires going on at home, requiring  some attention on my part.  Perhaps that use of mental energy helped me solve not only those issues,  but allowed my brain the rest it so desperately needed.   Whatever it was, my brain finally “Let it go” and I slept the entire night!

Enter morning and I got a chance to talk to Dan.  He had also been trying to problem solve at home as well.  We have some things to take care of before I return and we have come up with a plan of attack and I think it is all worked out now.  Not much I can do about these things here and now, but between Dan, my sister, and my friends, I think we have it handled.  It’s now about 6:00 and it’s time for my little morning snack of the biscuits I i stash away after dinner.   I pull them out and munch away.  Really takes the edge off until breakfast which usually is at 9:00.

Its now about 6:30 In rolls a IV stand with a bottle that looked a bit small.  I got a text from one of my team who said it must be steroids.  Ok, so we had some steroids early on this morning and before you knew it, breakfast had come and gone.  It was now time to do the big dance!  I saw there was another bottle and a bag that looked very slow it was going to last 5 hours.  I was a bit confused.  I asked Anastasia about that, and she said they do the drip very slowly so it would actually take about 5 hours.  That’s fine by me as long as it sends those little B cells packing.  Don’t let the door hit you on the way out!

So now what?  I had some time on my hands and had some bone pain, so I decided to take a nap.  There was actually a lot of naping going on today.  Not really much else todo.  I could have watched movies, played on the internet or read.  But to be honest, I was just plain tired.  So I used my time to nap.  Apparently I was not alone.  Most of my team did the same.  I think we all deserve it at this point.

One thing I will say aboutRituximab, This drug  really is an ass kicker!  Not only did I sleep/nap most of the day, but when I did get up, I was very unsteady on my feet.  I was doing the “furniture surfing” thing to keep from falling.  Even in the restroom, I had to use the grab bars to pull myself up.  Never had to do that before!  Made me feel a bit old.  But Dr. Federenko came to check on me later and told me it was normal that things like this happen.  He just told me to be careful tonight.  Perhaps tonight would not be a good night to do laps on the ward.  I told him I would save that for tomorrow.  Plus I get to go outside tomorrow!  Even if it is for just a few minutes, I can’t wait.

So,  bottom line, today was a bit of a struggle.  But I made it through.  I am a fighter and refuse to give up.  Remember, I may have only one match.  But I can make and explosion!  Thats what I intend to do!

On that note, my fight song.  Thank you Rachel Platten.  It could not be more perfect and I dedicate it to all those fighting something out there.  Most importantly I dedicate it to my husband Dan Castaneda who is the strongest man I know.  I love you to infinity and beyond!

 

https://www.youtube.com/watch?v=sQhGnNEFtPk

Well here it is folks!  The big moment we have all been waiting for!  I’m coming out of isolation today!  This really is exciting news! This means my blood levels are considered safe, and the Doctor says the doors can open!  I can now walk the hall and visit with friends.  The only drawback is I have to mask up to do that.  But tis a small price to pay for a bit of freedom.  Although I must say, I find most people still stay in their rooms.  And although,  I can walk the floor today!  I don’t get to go outside until tomorrow, but I am good with that.  That can wait.

In the meantime, a little celebration with an iconic lady from the 1970’s who truly showed style, grace and talent, and who wasn’t afraid to take chances in her life. Miss Diana Ross!   It sure paid off for her,  and I am confident when I leave Moscow, it will pay off for me as well.

I thought this song was perfect for todays video.  Unfortunately you won’t be able to watch it from the blog page.  After you hit play you will see a link to youtube.  You can watch it there.  Either way, I thought it was a fitting way to express how I am feeling today!

Im Coming Out!

https://www.youtube.com/watch?v=HR6pRNfhlJY

 

A few other things have changed as well, now that I am officially out of isolation.  I still get the white jimmies at night but tomorrow I get my stuff back! I can wear normal clothes and go outside!   I also no longer have to wash my dishes three times!  Only one wash is required at this point.  And lastly, the vodka baths have stopped.  I do still use the mouthwash they gave us.  It is really strong and I like it.

So for the future, what’s next?  Well tomorrow my team will get a five hour infusion of  Rituximab.  This is one of the last therapies we will be given before we go home.  It will help rid our bodies of any lasting little B cells that can cause trouble for us.  It is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells, and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders like Multiple Sclerosis!

So that really is it for now.  Im out of isolation.  I am getting some exercise and I am gearing up for my five hour B cell killing elixir tomorrow!  That will get me on the last road to recovery.  More  tomorrow.  Thanks for following 🙂

 

Well as I have said, this isolation thing really has not been too bad.  There has been a lot going on with all the ins and outs of the daily run.  But I got a bonus!  I had a very unexpected visitor!  My cousin Father Thomas Mac Lean, happens to be in Rome right now studying at the American University.   He is getting ready for a 6 month deployment to Mexico to practice Spanish, so he can better communicate with his parishioners.

At first I thought this visit was a crazy idea.  It’s not like he can just jump on a train and get here in a few hours.  It was quite a feat to accomplish.  But when Tom gets an idea into his head, he cannot be stopped.  It all started with a FaceTime conversation.  He then went to the American Embassy in Rome, trying to get an emergency visa to visit his, “sister” who was in a Russian hospital.  That meeting lead him to the Russian Consulate, which finally got him to the hospital, and Anastasia and Dr. Federenko.  They prepared the necessary paperwork and boom, he had a visa in no time.

So he was able to book tickets through Brussels and then on to Frankfurt then to Moscow.  It did turn out to be a bit of a fiasco, but he made it.  Apparently the airport in Brussels does not really care if you miss connecting flights.  You have to go through the security line when you arrive from your flight, even if you are just connecting.  That is where the problems happened.  Tom said half of the people missed their connecting flights.  He luckily was able to get onto another airline and made it into Moscow sometime in the early morning hours.  I really had no idea whether he made it or not until the next day when he texted me.

He was fortunate enough to get a room at the Vega, where I had contacts who could get him to the hospital, and get him into see me.  Sadly I was already in isolation so I could  not hug him or touch him.   I know more than anything he wanted to give me communion, and the sacrament of the sick, but that requires touching and that if off limits in isolation.  But we  had a great visit and it was delightful to see him.

He really only had 3 days here, and I really wanted him to get out and see some of the city.  Remember he had already missed a full day due to the airport problems.  So after seeing him the first day,  my friend took him out to a flea market, where he got to see some of the local merchants selling their goods.  Tom was a bit sad when I told him that the flea market was closed on Monday and Tuesday.  I think he wanted to go back. I told him he could get similar items at the hotel and airport, but would pay more.  I also offered to help him with somethings on line later.

So day two came and he visited again.  We agreed to set up a little prayer novena to say each day and I thought that was nice.  My family can use all of the prayers they can get right now!  After the visit, he did actually get himself onto the Metro, and go to Red Square and see the Kremlin and St. Basils Cathedral.  It was getting late and I really wanted him to get a chance to at least see some of the sights of the city.  He got there as the sun was setting and did get some pictures and had a chance to dine at a nice cafe in Red Square.  He said the waiter spoke some french, so it gave Tom a chance to practice his French.

It seemed that he really did enjoy that time and Im glad he got to see some of the city. The crazy thing is, I actually got to see him three times while he was here.  He came to see me every day of his trip. He even showed up on the morning of his flight.  It was a short visit.  I didn’t want him to miss his plane!   It really meant so much to me to see someone from home.  We were so close growing up.  Between the three Mac Lean boys and the Trammell girls, it was just like a big group of brothers and sisters.

Sadly we don’t get to see them much these days.  I’m glad that when Tom gets an idea into his head he doesn’t let go until it comes to fruition.  Until we meet again cousin.  Safe travels.  Love you!

Well here I am fully in isolation now.  In fact, I am almost out.  But before we get to that fantastic event which might happen tomorrow, I wanted to give you just a little taste of what goes on here in isolation.  It really all comes down to getting into a grove.  Cue the 1980’s genre again.  Ladies and Gentlemen I bring you Madonna!

 

So isolation sounded really really boring right?  Nothing to do but play on the computer, watch movies and read.  Well I am here to tell you, it really can be a busy, filled up day.  Here is how it filters out.

I usually wake up sometime between 3am and 6am if I get a call from home.  I talk to Dan and see how he is doing.  The time difference makes things difficult, but we take the time when we can get it.  I am usually a little hungry at around 6am so I go to my store of goodies and grab some biscuits.  They give us a four piece cookie package with our dinner. They really are quite bland.  Not really cookies, and not really crackers.  So I save them for the morning time and crack them open.  It takes the edge off until breakfast comes.

But not so fast.  At about 6:30 to 7:00 am in comes an infusion of what I am assuming is steroids.  I get that along with blood pressure check and temperature check.  And they take blood samples.  All signs have been normal.  Then I eat my cracker and go back for a little rest until about 8:30 when breakfast comes.  It seems to come earlier on the third floor.  I guess they must start here first.  Breakfast usually consists of some kind of oatmeal like porridge along with bread and sometimes a boiled egg!  I have grown to love those boiled eggs.  You know exactly what you are getting and it gives you some protein.

So after first breakfast, you usually see Dr. Federenko.  He comes in pretty early and has your blood results.  You know the tests from about 6:30 in the morning.  So Dr. F comes in and charts your progress for you and lets you know how you are doing.  There was thought today that they might open my isolation door.  He decided to keep me a day longer.  There are three of us going through as a group.  We are affectionally know as the triplets or the”Two Aussies and the Yank”.

Although I am actually the oldest, I have been the one who is always last, so I now call my self “baby sister”.  And sometimes baby sister just needs a bit more time.  The good news is that my levels are still rising, just not as fast as my over achieving siblings!

So after meeting with Dr. Federenko and learning I would be in ISO another day, I decided to take advantage of this time to get caught up on things.  Or so I thought!  There really has  been a lot going on here.

At some point in the day they come to clean your room.  That is my chance to get a quick, and I do mean a very quick shower.  It is really more of a rinse down and dry off.  After you do that, they give you a mixture of solutions they want you to wipe your entire body down with.  I refer to it as the vodka bath!  It actually does take a bit of time and it all happens when they are cleaning the room.  So really there’s not a lot of time.   Also, it is  pretty tight quarters in that tiny bathroom which makes rushing even more difficult.  The small space also helps you to take on the “fumes” from the vodka bath.  All I want to do is get dressed and out of there.  They also give you a new issue of your “prison” pajamas.  The pace is actually exhausting and when I am done, all I want to do is have a nap.

So after the Vodka bath and jammie change, I do try to take a very tiny nap.  30 minutes if I can get it.  But then you know what happens?  Second breakfast!  It all just seems like so much food.  Second breakfast usually is two boiled apples, some baby cottage cheese and bead.  The baby cheese is awful.  I add sugar to it and fold in the apples.  That is about as much as I can do.  If I can’t do that, I drink a protein shake.

So now its Noon or a little after.  Now what?  We are responsible for washing our own dishes in the third floor ward.  Actually three times is how I understand it.  I finish my food, then wash in the bathroom with dish soap.  Then I put the plates and utensils into a box with a special solution and let them rinse no longer than 5 minutes.  Then I have to rewash them to get whatever that solution is off of the plates.  Then I dry them and stack for the next meal.  I have to admit, I am not always super diligent about doing this.  I do wash the dishes but then sometimes they go into the solution and a nice nurse will finish up.  I don’t do it on purpose.  Sometimes I just get tired and need a nap.

Lunch officially is at 2:00.  Today is Wednesday and that is the worst possible day for food here.  You always get some kind of soup which I have been alright with a little of that salt I brought along.  Todays soup was fish soup.  Im sorry, It just was to going to happen.  Oh and did I mention the main entree was Beef Tongue again.  I have to admit, I did try it when I first got here.  I did it only because so many people doubted that I would.  So I did it and well, it tastes like beef.  Surprise! I just have a hard time wrapping my brain around eating it.

So now it is almost 4:00 in the afternoon and I have been going pretty strong!  Dinner is not until 6:00 so I have some time to get some more work done.  I wan’t to do one more very special blog post but might take a nap.  But at least you have an idea of what my days are like.  After I blog, I usually do try to watch something on the iPad for a couple of hours so I can get to sleep a little later in hopes of sleeping in a little later.  We shall see how that goes.  Thanks for taking some time for a little bit of the day in my life right now!

So really what is Isolation all about?  We spend many days preparing our bodies to get the stem cells out of our bone marrow,  only to be filtered through a machine and then frozen.  In the mean time, we put ourselves through four pretty rigorous days of high dose Chemotherapy.  Why?  Whats he point?  The point is to wipe out our immune systems.  Then we put the treated stem cells back in to rebuild a new immune system without the previous MonSter we call MS.

So can this be dangerous?  Yes of course.  But we have a top group of professionals here who have been doing this for years and they really do know what they are doing.  They know what to look for and what to do for us, if necessary.

So I just couldn’t help putting a little 1980’s video in here that seemed appropriate.  Rest assured I am in no danger.  But who could resist a video with Kenny Loggins and Tom Cruise?  Enjoy and you are welcome.

So the time we spend in isolation the nurses are constantly monitoring us.  We get a wake up call at about 7:00 for a morning infusion of what I think is steroids.  I base this on the way it makes my food taste.  We also get blood pressure tests and temps taken as well as blood drawn from our central line.  See that is why it is not such a big deal to have that octopus sticking out of my neck.  Makes life very easy.

Sometime in the early afternoon we get our blood results back from Dr. Federenko, and he lets us know how we are doing.  There are certain things he is looking for.  Remember when we were put into these cells, our blood numbers were already dropping.  As we stay here they will continue to drop, and at some point they will start to go up!  When things are looking good, that is when they will open the doors and we can have a walk outside.  It doesn’t mean we are done, but at least we can leave our room for short periods of time and have a walk on the grounds.  All masked up of course!

So what are we looking for?  Mainly three things are the important part of our blood work evaluation:

Hemoglobin:  This is what transports oxygen in our blood.   Normal range is 120-160.  Mine continued to drop 112, 108, 104 but then bumped up to 115 and stabilized at 108 where it has been for three days.

Leukocytes:  Fancy word for white blood cells.  They help regulate immune system.   Normal range is 4-10.  On day +1 I was at 1.32, then dropped to .29, then .13, then .1. then .009, .009 and rose on day +7 to .11

Platelets:  These are tiny cells in your blood that help your body form clots when needed.  Normal range for platelets is 150-400.  I started out on Day +1 at.97, then dropped to ,89, then .65, then .51 and on day +5 was sitting at .21.

At that point Dr. Federenko said he thought it was a good idea for me to get an infusion of platelets to help my numbers and he ordered them right away.  That seemed to do the trick.  The next day my platelet count went up to .38 and now at day +7 is at 27.  Everyone seems happy about the numbers

Remember the important part is that we do want the numbers to drop.  We actually don’t want to be in in the “Danger Zone”.  We are not.  My numbers are steadily going up on their own now,  and I am told the doors to ISO may open tomorrow or maybe even the next day.  Either way, I am totally happy with that.  Things are going well, and I could not be happier with my progress.  I totally expected to be in ISO for 10 days and it looks like it might be something more like 7 or 8.  Can’t complain about that!