Moscow Journey-Day Eight, June 30

Well, another step forward today.  Since this is day four of neupogen shots and steroids to promote stem cells moving from the bone marrow to the blood stream, it's time for the port to be installed in my neck.  This one of two things I've been dreading.  Well, it wasn't bad at all.  The nurses get me situated lying on my back  on the table, and I see Dr F about a yard away in the next room.  I say, " Dr.F, don't forget I want pain meds."  He says, "They know."  The nurse Gaulina shoots me in the booty, and the other nurse (doctor.) proceeds to swab my neck.  Dr. F says topical analgesic.  Thank God Dr F speaks English.  I attempted to get Dr F to hold my hand throughout the procedure, but he said, "the doc doesn't want me there in her sterile environment."
The doc proceeds to make a slight cut in my neck and thread a rather large, long tube down my jugular.  There was a slight pinch and pressure as she pushes the tube down the vein, but it really was not unpleasant.  So now I hope we get better TV reception as I have three six inch antennae sticking up out of my neck.
   My attitude at this point is that it's all a means to an end.  If this what it takes to enable me to have my life back, bring it on!!

Moscow Journey-Day Seven, Sunday, June 29

Well, one month from today we'll be flying home, me bald and probably a little fluffier from all the steroids, four meals a day, two protein drinks, and no exercise.  Not a pretty picture, is it?  But, hey, I might possibly be walking for the rest of my life rather than wheelchair or bedridden.  Now which choice would you make?  And if I can walk, I can walk off some of the extra fluff.  Oh, how I dream of that!

Today, Dr F and Anastasia organized a part/tea called New Life Anniversary.  There were former and present HSCT patients in attendance, and Anastasia had put together a video presentation of former patients of Dr F.  It was very encouraging to see such improvement and gratitude for a new life.  I hope to be one of those walking (dancing?) patients who comes back to bring hope to others.

Had a good nights sleep last night by taking a sleeping pill after the 11:00pm shot and then a Valium after the 3:00 shot.  I slept until 7:30 and then dozed off twice today.  Right now, at 8:50 with it full daylight outside I am sleepy.  I know my sleep patterns are of immense importance to all of you five readers who are following this blog.

Oh, tomorrow is port day.  A large needle with a 8 or 10 inch tube will be inserted into my jugular vein.  Step up the prayers please.

Make some comments.  Let me know you are out there.

Moscow Journey-Day Six, June 28

Day two of steroids infusion and neupogen shots.  I'm still on a steroid high and want to visit everyone and talk endlessly, which you all know is so out of character for me-;). I am enjoying getting to know Hatice, the 34 year old girl(so she seems to me) of Turkish descent who lives in Australia.  Her older brother learned of this procedure, did all the research, presented it to her, and then accompanied her and her husband here for Hatice to have it done.  At first, she was very shy, but she's so very sweet and loves company.  Whenever one visits her room, she hops up and starts preparing refreshments and tea.  I guess it's her country's custom.  I told her when they come to my room, all they get is my charming personality.  Her other brother and sister in law flew in today, and Tom, the first brother, went home.  I'm sorry I didn't get to give him a proper good-bye.
   All the nurses and other patients are so pleasant.  It'll be as if we have a new international family.  I only have two more days of steroids and neupogen shots, and they will put the port in my jugular on Monday.  That's one of the two things I don't anticipate, but Dr F assures they will be very gentle with me.  We'll see if his interpretation of "gentle" is the same as mine.  Please pray that it is not painful or traumatic for me.

Moscow Journey Day two, June 24, 2014

What a day!  I've never been through so many medical tests:  breathing capacity, heart function, vein ____, sinus and lung X-rays, MRI of brain and spine, swabbing of private orifices (you don't want details), blood tests, abdominal and vaginal ultrasound, and one more I can't remember.  I took a two hour nap when we returned to my room and missed consulting with Dr, F about test results.  Was that fast or what?
  Interesting detail:  there are armed guards at the gate to the hospital and patients' caregivers, I.e. John, must have a special pass to enter and exit.  There are also guards at the motel and one must show room key to enter the elevator. I certainly feel safe!   Everyone on the staff here at hospital is so nice, even if we can't really have a conversation.  Dr. Fedorenko and Anastasia, his assistant, are fluent in English, but they are the only ones.

Moscow journey: Day Four Thursday, June 26, 2014

 We are coasting today.  We've had a lazy day just lolly-gagging around and reading and visiting my HSCT family.  There are such a nice group of people here from Indiana, Maryland, Texas, Australia, England, and New Zealand.  We hear disdain for neurologists from everywhere. Neuros are drug-dealers-;  I inquired of Anastasia why I'm not moving forward in my treatment, and then I saw her speak to Dr. F.  He came to me to say we'd start treatment tomorrow.  I will have steroid and neupogen injections(sp) to reduce inflammation and promote stem cells moving from bone marrow or blood to be harvested for later reinfusion.  I'm ready to get this show on the road

Moscow journey: Day Three Wednesday, June 25, 2014

 I had one more test this morning.  Now I'm done with testing!  We did get to meet with Dr. Fedorenko.  He explained all tests and gave me encouraging news.  I'm normal!  Who would've thought I'd come to Russia to be told that!  The good/bad news is that I have four active lesions.  Good news because there is more likelihood of improvement, not just halting of MS.  Bad because it has caused deterioration during the past six months, but that can hopefully be reversed.    I'm feeling God's hand in this more and more.

Moscow journey-Day One, Monday, June 23

After 12 hours of flying and two layovers, we arrived safely in Moscow Monday, June 23, to be picked up at the airport and transported to the A.A. Maximov Hematological and Stem Cell Institute by 1:45.  Dr. F left his apologies for not being at the hospital today, but we were met by the beautiful Anastasia.  John found the husband, let me rephrase that; Judi found the husband of a friend I've made on FB and talked on the phone with who went on the trolley with John to the motel.  John was so exhausted I was concerned about him.  Wait!! This is supposed to be about me!

HOPE

"Hope" is the thing with feathers - (314)

By Emily Dickinson 1830–1886 Emily Dickinson
 

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -........

         Hope if such a small word with such large implications.  If one is diagnosed with a chronic, degenerative, crippling disease with no cure, no medicine, or positive outcome, HOPE becomes a very large word. Losing hope equates with depression which I've dealt with in the past four years.  I was always an optimist and had a positive outlook, but when MS returned (I was in remission for 19 years) to alter my capabilities and deprive me of a future doing all the things I love to do, I've found it difficult to maintain a positive attitude.  In my retirement (which I had to take a couple of years earlier than planned because of MS symptoms that interfered with teaching) I envisioned traveling-which is difficult to do when one cannot walk unaided more than 25 feet, dancing-which is now impossible since my feet won't obey commands, and taking our grandchildren on trips-which is not feasible since I am not mobile enough to walk around with them and my husband, but MS has robbed me of those dreams.  Although I can still drive, I barely go to a store by myself anymore because of the inconvenience of getting the rollator in and out of the car and the fatigue I experience after a short distance of walking.

         When I learned of Hematopoietic Stem Cell Transplantation for the treatment of MS, I regained HOPE,  For me, it might not restore all the lost capabilities mentioned above, but at least I have " hope".  About 20-30% of patients who go through HSCT do not experience halting of the disease; therefore, I am grateful to have many friends praying for me that this treatment will halt the progression of MS for me.

          To have HOPE again is huge.  I go into this treatment, knowing that it is a difficult procedure, and I will not regain my health status that I now enjoy for many months, and I won't truly know what positive outcomes I might achieve for 12-18 months.  I'm willing to endure this because it is the only HOPE that I have been offered.  HSCT is the only treatment that is offered with a proven positive outcome for MS (and other autoimmune) patients, and I, therefore, am eager to undertake this medical adventure.