August 18th – One month recovery and Night of 100 Luminaries

IMG_6203I’ve been home from Moscow for four weeks. Although I’m not overflowing with energy, I haven’t had severe fatigue. I’ve been told that approximately one month after coming home the steroids would totally be out of my body.  I should expect to be really exhausted and may not may not be able to make it out of bed for a few days.  I keep waiting but it hasn’t happened yet. Mornings are harder for me, but once I’ve been up for a while and stretch, I’m able to move better.

I’m also prepared to expect a roller coaster ride for my recovery.  My old MS symptoms can leave and come back again. It is unpredictable, and there’s nothing that I can do to change this. I need to make sure I get plenty of rest and stay as stress-free as possible. It is definitely easier said than done, but I’m doing my best.  So far, I’ve been less fatigued and I’m walking better  (not good, but better) than before the treatment. But the spasticity (tight, tight muscles) is back in my calves, and stretching doesn’t have an effect on it.

Since my immune system is still not very strong, my whole family is taking infection control very seriously. We have a bottle of Purell at the bottom of the entrance stairs and at the top of the stairs. Everyone who comes uses it. I wash my hands frequently, carry hand sanitizer with me everywhere I go and wipe down the kitchen counters with Clorox wipes often.
The biggest change involves my husband. Fred loves fruit. He especially loves serving it to other people. He is famous for bringing a huge bowl of cut up watermelon, no rind, to the beach and serving his family, friends, renters and people he’s not yet met his delicious watermelon. At home, he also likes to serve fruit in very large bowls. In the past, he encouraged everyone to use their fingers or toothpicks to get the fruit. He’s been serving fruit like this for many years. This year, he’s using smaller bowls and serving the fruit with plates and forks. I explained that I need to be very careful right now with everything I eat and touch.
This weekend, I saw Lucy and Desi (and Dana & Greg) for the first time since I left for Moscow! I was careful after touching the pups too : )

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I’ve not gone out to eat at a restaurant since returning home.  We typically don’t go out often.
When my friends Harriet and Joan visited, we had take out from Matts Fish Camp.  It’s a wonderful restaurant in my neighborhood!  I only wear a mask when I go out to a public place.  Although I’m allowed to go out to eat at a restaurant, I can’t imagine wearing a mask and lifting it up to take bites of food.  Continuing to enjoy Fred’s delicious home-cooked meals is my preference.  I’ve also eaten at friends homes a few times and that was wonderful!
A few Sundays ago, my neighbors had a special surprise event at the beach for me.  It had been raining for a few days and this was a beautiful clear night.  There were 100 luminaries that were lit and sent up into the sky.  It was a huge gathering of love and support with friends from my neighborhood.  It was a magical night and everyone who was there loved it.
I want to thank everyone again who planned, contributed and came out to enjoy the evening with me, my family and friends!
Miles, one of my neighbors took most of these photos that captured the spirit of the evening. 

It’s still mind boggling that the cost for the Stage 3 HSCT clinical trial at Northwestern is well over 3 times the cost of HSCT in Moscow.  While I was not eligible for Northwestern’s  clinical trial, I’m still glad that many people do qualify and are able to get treated in the US.
We are still fundraising to pay for the cost of my HSCT in Moscow.  I’m trying to stay positive even though we have not reached our goal yet.  I am grateful for all the contributions I’ve received so far.  Thank you all for your support and prayers.

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August 12th – Recovering in Bethany

I was glad I practiced walking up over two flights of stairs on my last day in the hospital.  It gave me confidence that it would not be a problem when I got home.  We have a lot of stairs at home and I was really ecstatic that stairs were not a problem for me.  I do hold onto the railing and I   am not speedy!!!
I started walking outside the day after I arrived home as per Dr. Fedorenko’s suggestion.  I walked slowly, but walked for a half hour in my neighborhood and my legs did not complain.  Before HSCT, I had not gone for a walk for over 4 years.  I walked where I had to walk.  After 10 minutes, my legs would get heavy and I would get fatigued.  This was a major change that was obvious to my family and close friends. Rehab won’t start until I’m home for a month, so any improvements that are noticeable now are pretty exciting for me.IMG_5915

 

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These photos were actually taken the 2nd day I was walking.  I decided after my walk that I would peek at the beach.  I was not ready to walk on the sand yet.  This is the view from the top of the walkway to the beach. I was happy just to see the water!

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It was a windy day, & my hat looked very silly.
But, I was lucky to see my neighbors, Karen, Miles and Mallory heading home from the beach!

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My son, Jonathan, knew I really enjoy the beach and sitting in a circle with my friends and neighbors.  I call it a circle of love.
He made me a ‘beach wheelchair’ from old riding lawn mower parts and added a seat from a car.  I was expecting PVC pipes, not heavy steel.  Jonathan has a creative mechanical 
engineering  mind and added things he thought were important.  The cooler had it’s own spot and could be used to elevate my legs and of course, carry beer : )

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Jonathan surprised me with his visit and with his beach wheelchair.  It was not at all what I was expecting!

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I was pushed, by Adam (on the left) and pulled by Jonathan (on the right) through the sand and although I held on really tight, I loved it!

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Sari, Jonathan’s girlfriend visited me 3x during the first two weeks I was back from Moscow.  Once she came with Jonathan, and twice she came by herself. She is always incredibly helpful when she comes and she knows  I appreciate all her efforts!!! 

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I was expecting to have great difficulty walking on the sand.  I thought I would need a strong man on both sides of me.
I was so surprised that I was able to walk better on the sand than last year.   I still need an arm  for balance, but my feet are able to lift higher and clear the sand much easier.  I am not sure if my walking will regress if I get extremely fatigued.  But for now, I do not need the festive beach wheelchair!

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Adam and I were heading out to my next door neighbor’s for dinner and the Boarman/Priesters + Lucy were passing by.
I’m always so happy to see Katie, Lucy, Anne, Jane and Charlie!

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 An unexpected visit from Tom, Scott and Kamran, who rode their bicycles to come and see me : )

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Michele and Susan took my daily walk with me and were impressed with the bottle tree.  We have great soil for growing bottles in Bethany : )

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A quick photo before they all headed back home to Maryland.

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Another surprise visit!  Eva said she would stop by, but did not mention she was bringing Annie, Niki and Sue!

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I am so glad that I chose beautiful Bethany Beach for my place to recover and heal.
I love all my beach neighbors and my visitors!!!  Let me know if you are in the area, I’d love to see you : )


August 10, 2014 – Heading home from Moscow and still fundraising!!!

The day before I left for home, I left the hospital grounds for the 2nd time with my sister and brother – in-law!   They flew back a few days before my flight to help me get home. I was not as ambulatory as many others who were able to see a lot of Moscow.  I was happy to be outside in the sunshine! This is the guarded gate to the hospital.  

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The day that I left Moscow was a very sad day for me and many others.  A half hour before I left, I learned that a beloved patient and friend, Kellie van Meurs died of heart complications.  Kellie had Stiff Person Syndrome (SPS) and found out during the testing in Moscow that she also had Chronic Inflammatory Demyelinating Polyneuropathy (CIPD).  She was a strong, sweet, lovely, funny, open and brave woman who fought her disease until the very end.  She will be missed by everyone who had the pleasure of knowing her.  She was a fighter and a strong advocate for her health.  We had many talks about her family, her mom and her two aunts, her life in Australia and how difficult her life was with SPS.  Her Aunt Rosemary, who accompanied Kellie to Moscow was also a delightful and strong person that we were all so happy to meet and get to know.  I was extremely upset to have to leave everyone in Moscow who would be waking up and hearing the devastating news about Kellie.  On the flight home, I told my sister all about Kellie, her strength, determination and her smile even though she was in pain, her son and daughter, her emu from Australia and all our conversations.  She is missed by everyone who had the pleasure of knowing her.   It was very hard to leave after this awful tragedy.

On the flight home, I wore the 3M Particulate Respirator 8233, N100.  I think the N95 was recommended, but this was the one I found.  I bought it on Amazon for  $7.34  I could not believe how comfortable it was for the 11 hour flight.  I only took it off to eat and drink.  

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Arriving at JFK, my husband and son were there to meet us on time : )
Look at my swollen legs : (

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I had asked my son to bring a futon for me to lay flat on in the back of our car.  My legs were so swollen, I just wanted to elevate them during the 5 hour or so car ride home.  These are my loved ones watching me ‘gracefully’  enter the back of the SUV.

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It was not graceful, but comical!

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I was extremely comfortable for the first time since leaving Moscow!
My legs were elevated and I slept for most of the ride home : )

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Arriving at the beach, I was greeted by beautiful signs made by my neighborhood kids!

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and many festive balloons too!
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These same kids are the ones who fundraised for two weekends while I was in Moscow.  They sold lemonade, cookies and lollipops by our walkway. They also went up to people on the beach with a huge sign.  Matt Haley, the owner of  Matt’s Fish Camp – a lovely restaurant at the end of our street – said he would match whatever the kids raised, up to $500.  The Tower Shores community was very generous and the kids raised $1000 for my benefit!

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Last weekend, these 3 sweet neighbors helped my fundraising efforts again!

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They were so proud of their hard work and I was so proud of them too!

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They raised $96 in one day and presented it to me in their special pouch!

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My friend, Margaret, was so impressed by the 3 girls.  She decided on the spot to match what they had raised!!!
Thank you so much to everyone who has helped me fundraise.  I still have more to raise, but I am over 3/4 of the way to reaching my goal to be able to pay for the treatment and related expenses.

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Adam is still fundraising for me whenever he sells sno balls!

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August 9, 2014 I’m still catching up from my time in Moscow!

 I’ve been back home for almost 3 weeks and all is well.  This would have been my last post before the day I left Moscow, but fatigue got the better of me! 

Wanted to share the photo of my jugular catheter insertion site.  It’s so tiny.  Everyone always sees the huge bandaged up tube, but this is how small it really it. Nothing to worry about going in or coming out!  There is mild discomfort upon insertion.  Honest!!!  The day of the photo it was just being cleaned, not coming in or out. The redness on my neck is just from the tape  and covering that is usually on top of it to keep it clean and dry.   I made the photo small so no one would look at it and faint : )

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This is Anastasia!  My last hospital payment was delayed because the banks were closed for the July 4th holiday.  Then I went into isolation.  I was not able to make the final payment until I got out of isolation.  Anastasia wheeled me through the underground tunnel and got a great cardio workout!  She was running so fast!  Here she is holding my credit card with my family photo on it : )  I got a capital one credit card with NO foreign transaction fees.  Those fees can add up!

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Now, she’s waiting for the payment to be processed.  She is smart, fun, hardworking and always so sweet and helpful!
I am not sure how everything went so smoothly before she was hired in May. She had MS and was treated by Dr. Fedorenko a little over two years ago. Now, she is healthy, happy and does everything she can to help every patient.  

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Before we even met, I asked her to translate a tribute to Dr. Fedorenko’s mentor, Dr. Andrew A. Novik.  It was a beautiful tribute, but it was all in Russian.  She and her friends translated the video so quickly! Dr. Novik first performed HSCT on MS patients in 1999.  He was a true pioneer and thought about treating patients and not just their diseases.  For over 35 years, he was able to help many patients and protect them from their inevitable fate of becoming totally disabled.  Dr. Fedorenko has the same philosophy, skills and dedication to his patients as his mentor, Dr. Novik!  He will do whatever he can to help improve the quality of life of his patients.

and she took a photo of the two of us : )

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I met a lot of really wonderful people when I moved to the 2nd floor.
In this photo:  Brett, Glenn and his wife Penny, Kris, Dr. Fedorenko popped in for the photo, my brother in law, Robert, me, Vicki, Gunn Heidi and Mark,  Vicki’s husband.  It’s hard to tell from the photo who is the patient and who is their loved one who accompanied them to Moscow.

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Glenn and his wife, Penny

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Vicki and her husband, Mark.

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Hatice and Brendan on Brendan’s New Life Birthday!

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Chad and Misha!

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Brendan the day before I left.
Gave him essentials like a few extra zip locks and all the duct tape I had left before he went to isolation!

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August 3rd – Many Apologies for not keeping up with my blog!

Since I experienced severe fatigue after isolation, I’ve only blogged once.  I’ve been home now for two weeks, but am going back in time to when I was still in Moscow.  I’ll be updating more regularly now that I’m feeling so much better.

One of the most important days at the hospital was the day I received my stem cells back, July 3, 2014. This is a photo of me receiving my stem cells.

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This is the monitor that was in the room.  I felt fine, although I was seeing black spots.  I did not know my blood pressure was all over the place during the transplantation.  Dr. Fedorenko ordered an ECG the next day and everything was fine.

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This is the video that Matt, Andrea’s husband took of my stem cell transplantation. Dr. Fedorenko held my hand during the procedure.  I asked about the Russian words for breathe in, and breathe out – Dookh – Venab.  My heart was fine, my stomach was a little upset. It was easy.

 

These are the photos of the celebration a few hours after Sheila and I received our stem cells back.  It was so much fun! Throwing the liquid nitrogen from the bucket that the stem cells were stored in are a major part of the stem cell celebration. It really was a joyous occasion.  Sheila was just as excited as I was!

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                                                          This was just a little bit of it of the liquid nitrogen.

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This one is fuzzy, but I love it anyway.

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I scared Sheila a little bit with this one.  Dr. Fedorenko enjoys every minute of it too!

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  I tried to get every bit of the liquid nitrogen out of the bucket!

10527332_1524201364466625_9014409262268532148_n-1Happy, Happy, Joy, Joy!  It was a festive celebration.  I had a bar of chocolate for everyone to share.  I missed the next two birthday celebrations because I was in isolation.  I could not even hear anything!  The next two I got to experience were after I got out of isolation and the celebration food spread was over the top!

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This was Gro Larsen’s New Life Birthday celebration! Look at that throw!!!

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Sunday, July 20th – Haven’t updated since the fatigue hit – leaving Moscow this morning.

IMG_0561Apologies in advance.  So many things have happened at this amazing hospital.
Once the fatigue set in, I had to rest so much more.  Lots of photos to come, lots of wonderful patients as well.
Marian and ‘Robert arrived yesterday.  They were here to witness and enjoy a new life celebration!

Yesterday, was Saturday, July 19th.  Dr. Fedorenko gave me all the testing  results, as well as MRI”s and discharge instructions. He was thorough, as usual and answered all my questions.
Afterwards, Marian, Robert and I went to a local grocery store and Robert pushed me in a transport wheelchair.  It was too far for me to walk using my rollator.  Once we were back on the hospital grounds, I  decided I would walk for a bit, pushing the wheel chair  for balance and stability  I walked really slow, but  I continued  for a for about 1/2 hr and it felt so good!  It was the first time I had ventured outside for almost one week.

Once inside the hospital entrance with my four ‘favorite’ stairs, Robert carried the wheelchair up the stairs.  I decided to walk while holding the railing.  It was not difficult at all.  There was a full flight of stairs that I’d never attempted before.  Marian was nearby, but I did not require her assistance.  I continued to easily climb the stairs.
So, I went up one more flight of stairs!  Hip flexors and quads cooperated and I thrilled I had even attempting the stairs!

I feel ready to go home to Bethany where we have lots of stairs : )


July 15th- Fatigue like I’ve never experienced before in my life! – Day 30

Wow! Not at all what I was expecting. I had a wonderful day first day OUT after being inside for one week. I enjoyed the sunshine,  letters from home,  talking to friends face-to-face and once again being outside. I was surprised that I needed help getting up the four stairs, when it had not at all been difficult in the past. I just figured it was just one of those things. From now on I will only go outside before 5 o’clock during the week when the door with the ramp remains open. Carol and Ellie  had volunteered to take me all the way to my room but it wasn’t necessary once I was on flat ground. I decided to visit Sheila, my New Life Birthday buddy and her wonderfully supportive husband, Dan because she was now out of isolation as well.  I was planning on visiting for about 10 minutes.  Sheila was watching  a movie, and Dan was ready for a nap.  Well, my jelly legs did not cooperate and I stayed chatting with them for over an hour until legs were ready to walk the TWO doors down while still using my rollator.

The next morning, Sunday, July 14th, I had a visit from both Anastasia and Dr. Fedorenko.  They both stressed the importance  for me to REST, REST AND GET MORE REST. I stayed in bed the entire day and only got up for meals.  I also realized that I had not been getting as much sleep as all the other patients.  I stay up too late thanking people for their donators, support, prayers and love.  I am also continuously fundraising to help meet my goal.

One of my first official sponsors was Erin Cassell, of Roll Up’Dye.  She so generously volunteered 200 shirts, her skills her dyes and her time.  I’ve been searching unsucessfully for a venue, inside or outside and 200 adults/kids willing to participate for over 4 month.  I could be a camp, a church, boy scouts or girl scouts, a swim club a family reunion.  Any possible gathering of people who enjoy tie dye!

The event can be indoors, outdoors, hosted in a back yard, etc.  The variables are endless!   If the shirts will sell for $18 each, my fundraising goal would be closer to my goal : )  Please help me find a group who might enjoy tie dyeing!

So, I will follow Dr. Fedorenko’s orders, sleep more, delegate more and get tons more rest.  My body has gone through a lot and now I need to help it recover.  No more late nights and I’ll even try to take naps 

Time to solely concentrate on myself. My latest thought was that everyone who knows me, used to know me or wants to help fundraise can ask their friends for a small donation – $5/$10/$15 if it’s a good day. If they have already donated, they are just the collectors I take a much needed rest from fundraising and who knows – it could actually work. A small amount can add up and help me with the remaining treatment costs. However, this is not for anyone who has previously donated any amount in the past. Just please encourage your friends and family to make extremely modest donations if they can. What do you think? It could help a lot!
***Already received a donation from my sister’s friend, Karen, from Sacramento!  It works : )

So, these are my thoughts for today:
Take care of Nancy.  I did not know I had done too much.  But that was fatigue like I’ve never experienced before and I will certainly take notice of what I do every day and how my body feels later and the following day. I’ve been advised that this level of fatigue will be normal for the first 3 months after coming home.  Good to have an idea about what to expect!!!

This is a breakfast that made me so happy when I was in isolation.  Oatmeal, coffee, yogurt and thinly sliced apples made very soft in the microwave.  Today, I made tuna with cumin, turmeric and yogurt and that was so tasty too!  The food is healthy and excellent here, but a little homemade variety is fun too!

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One more is an older photo of Dr. Denis Fedorenko.  Some how, I love this one of him : )

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Last shout out of the day is today is Stevie and Carol’s 25th Anniversary!  Stevie was so sweet to loan me his ‘new’ macbook charger.  It was compatible with my 2008 macbook and mine decided to quit working last night!   Thank you again, Stevie!