July 13th – Isolation official over on July 12th– Day 28

I’ve been on a plethora of medicines since I’ve been in Moscow. I’ve had no  problems with any of the medicine or testing…except the MRI bothered my lumbar spine and was easily remedied with 800 mg advil and an ice pack.

There was no problem with the neupogen shots, steroid drip, chemo, or chemo rinse. Constantly using the bathroom was an inconvenience and disturbed my sleep, but it was insignificant in the big picture.

I’ve been taking:
Flucouazole 200mg/day which is an anti fungal
Ciprofloxacin 1000 mg/day which a broad spectrum anti bacterial                                                        Bactrim 960/mg/day 3x/week which is synthetic antibacterial (used in the treatment of various bacterial infections)
Omerprazole 40mg/day    

I eat extremely healthy all day, but at night due to the steroids, I snack like I have not eaten for days!  I talk to myself occasionally (often : ) and still try to fundraise and help my family from afar.  I’ve had mostly good days.  There was one night that I was not able to  sleep well at all, which is  very unusual for me.  I finally fell asleep at 5 am, and was gently woken by nurses at 8:30 am for my morning testing.  I am always able to get back to sleep for a few hours if I need more rest. But, I was awake for the day! It was a miserable day for me.  But, it’s only happened once.  I typically don’t take naps, but I expect that will change upon my return home to begin my recuperation. I’ve been fortunate that the whole procedure has not been as difficult as it has been for others.  I’m still  expecting a longer, more arduous  recovery than most because of PPMS and my level of disability upon my arrival in Moscow.  I’ve written down every inspirational message from friends, family acquaintances and strangers.  The one that I think about most is Go! Fight! Win!  This just sums up my plans perfectly.  There is nothing more important that can be done by me to improve of the quality of my life and that of my family than to restore my daily independent functioning and to gain strength.

Today, July 12, 2014, when Dr. Fedorenko came in for his daily visit he had some delightfully surprising good news. After less than a full week in isolation, my bloodwork  showed promising results.  Although, all our medical information is in our official chart which we’ll be given a translated copy before discharge, Dr. Fedorenko always brings in a hand written copy for us to discuss.

                                      July 12, 2014 – Hemoglobin  83, Leukocytes 2.4, Platlets 199
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I was exercising when he came in.  Hairnet is to control ALL the strays hair that are finally coming out!  Always try to take photos by my daughter’s fish art!

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So, the good news was, I was no longer in isolation!  I could leave my room wearing a mask, take a walk down the hall, even visit friends on the 2nd floor : )  I did not want to go outside my first day, having fallen out of my bed the night before.  I did not get hurt, just bruised a bit. Was trying to retrieve a paper that I dropped.  Still dropping many things : (
Since the door with the ramp is closed on weekends and after 5, I did not want to take the risk of the stairs by myself just yet.  But was so delighted to see some friends I’d not seen for a week and meet some new patient arrivals!!!!!!  BEST. DAY. EVER.  maybe?

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I can not stress enough how much Dr. Fedorenko cares for all his patients.  He is a brilliant, caring, warm, thoughtful, loving man and hematologist who should be cloned as soon as possible. There is no personal, medical or procedural question that I have ever asked that has not been explained fully and at length to me.  He had initially asked me to write down any questions I had for him.  He did not care if they were not well worded, small or inconsequential or extremely important to me.  He answered questions that I was just curious about as well.  He always took the time to make sure I understood what I was trying to ask.  My handwriting unfortunately has gotten extremely poor during the last few months due to PPMS.  I was writing down my questions, had trouble reading my own handwriting and my responses from Dr. Fedorenko.  Light bulb finally went off and I started typing all my questions with the date above it for him.  He lets me take the time to type his answers.  I can read them now : ) He answers questions from me and from my family.   He is a gem.  It’s also really easy to make him laugh which delights me. With not much of a body that functions well, my sense of humor and being able to make people smile is pretty much all I have going for me….FOR NOW!
Still furiously fundraising, but ready to go home in ONE WEEK….
GO! FIGHT! WIN!
Thank you, Anne!  I think about you every day and how much you always inspire me.  I can’t wait to see you!
Thank you EVERYONE for your donations and support.  There is no way we could have done this on our own!  Hugs and love to all of you ❤

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July 12th – Isolation – Day 27

Dr. Fedorenko visits patients every day, even on the weekends.  I explained what happened the day before and how I really needed just an hour of sunshine.  He agreed it would be a good idea, but that I must wear a mask until I returned to my room.  I was so happy.  I masked up and entered the elevator to go down to the first floor. My first elevator selfie, wearing my mask, of course!DSCN3595

I was going to meet Brendan, but the timing did not work out well.  Had to take my favorite stairs, because the ramp door is closed on the weekends.  I was still going to be thrilled just to sit outside by myself for a bit of sunshine!  Much to my delight, Nebahat and her husband Ali, Hatice’s family was just arriving for their visit.
We all enjoy spending time together and they did not mind having Hatice wait a little bit more to see them.  I  had a feeling that Hatice would be ok with it too.

DSCN3599I had been so excited that I was allowed outside, I left my room quickly.  I was wearing my same clothing as the day before.  Everything needed a solid washing, but I did not care.  I did not even attempt a  scarf to cover the catheter tubing.  I was outside!!!!!  We took a few more photos to remember my last day outside for a long time!

DSCN3601Then Wayne showed up.  We had not yet met.  But, I had met his wife, Misha a few times.  She was staying on the second floor, in a hopefully spacious room ( have not actually seen it), whose window opens for fresh air!!!  By the way, I did not remove my mask for the photos….not so vain.  One of the earpieces popped off.

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Also, not a vanity photo of me, but a lovely smile on Nebahat. Just an up close look at my hanging, jugular catheter with some lovely tape : )

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Sunshine allotment time almost complete,  Ali and  Nebahat went inside too to visit Hadice.  I decided I still had time to stop off on the second floor to have my last face to face visit with Brendan. I did grab a new mask, so we were not actually face to face : )  His dad, Bob was visiting too. So, I had  double the fun!
We took the time to share some photos.  His from his laptop and my two photo albums that my daughter, Dana had assembled.   This lovely sign was in the elevator!

DSCN3608I arrived back on the 3rd floor ready for my isolation,  I took some photos of how ISOLATION doors look.  They have  a bright green notice on them for no entry without full coverage from head to toe.

DSCN3613                                            Got to see Gro one last time before isolation : )

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My isolation period started Saturday, July 5th.  It was two days after  I received my stem cells back.  It’s been fine.  Daily intensive cleaning – Linens changed, room cleaned from walls to floor and I have cleaning routine for my entire body and  get help to accomplish it and get dressed.