Monday, May 5, 2014

51.  Russia on a Cold Day - International HSCT Patient Mini-Guide

Под лежачий камень вода не течёт.

Help yourself and others will help you.

There will always be a multiple and complex layering of any city, Nation. The history and the politics make the news, but it is the people who make it Russia.  And I hope today to help ease your path to Moscow, either as an HSCT patient or just as a willing tourist, and to let you see some of what I see of the people I have learned to love in my 6 weeks in Moscow.  And why I think that is one of the most important things I take home with me, apart from my brand new perfectly fine immune system.

  Me, reflecting upon Red Square, during 7 tourist days, before entering Pirogov for HSCT
I am the consummate tourist - I am in my heaven when learning about someone else's.

Red Square from upper floor of St. Basil's 

A familiar view of St. Basil's in Red Square 

What is Moscow like right now?  It will depend upon YOU and Moscow more than it will depend upon Putin or the international News (non) delivery that requires everyone feel at high alert for disaster at any and all moments. Remember the news is selling itself to you in 5-second micro-bursts in order to keep you glued to it so their revenue ($$) is higher. 

“We shall fight against them, throw them in prisons and destroy them. ” 

“It has always struck me that one of the readiest ways of estimating a country's regard for law is to notice what arms the officers of the law are carrying: in England it is little batons, in France swords, in many countries revolvers, and in Russia the police used to have artillery.” 

“You and the Germans, you have your super- soldiers, your secret weapons... but we Russians, we have nothing but our winter.” 

There is, in the news, and in some regions, strife in Russia, Ukraine, Crimea.  You, as a patient at Pirogov will not see nor experience anything of the political goings-on. Please relax (at least by this writing time) and know that it need not add srtress to your process.

NOTE:  did take one precaution this trip which I have never done before. Partly because of the Ukraine issues but more because I am here as a patient. I did go online, once settled, and register my travel and locations, contact and email with the US Embassy, Moscow.  In event of any change that might impact my stay, they know where to get to me fast. And I have had a couple of general emails to alert to things like legal protests expected in and around Red Square May 1-6. Cautions only to try to stay out of it, and to be a little extra vigil. Protests are always good to avoid, no matter what they're about, if you have no business being there, don't hang out taking photos. You can find the US Embassy, Moscow site easily online. It's very simple to register. I thought it was one thing to not stress over.

I got another email today from US Embassy and I've just done a quick screen shot so you can see what kind of information they send. This one was 4 pages long, info that you won't need. At the end of each is clear contact info for US Embassy, which might not be a bad idea to Screen shot and email to yourself, have on phone or iPad, print and tuck into passport for easy reference, too. Just thinking out loud here. In over 5 weeks here, I have had only 3 emails from then. It is not a daily alert -just a caution alert type system.  But here's the screen shot of today's email:

I have spoken at length with Dr. Fedorenko about just how this works politically, having foreign (USA) patients coming in, and if there is any pressure on medical community for the international health and humanitarian issues. He tells me there is none. They are insulated from that. Yes, we do have to have documents, we do have to have immigration stamps and VISA and more stamps and forms. All of which are easily managed and you need only comply and carry, and be a good guest in Russia.

Here, in his department for HSCT, there is room for just 120 patients to be healed in a year. His plan is in place to expand that by 2016, making perhaps 480 patient-capacity per year. Of that 120, only 85 can be foreign patients, and 35 must be Russians who are treated at no cost.  The incoming paid patients are helping to build the structure and service, and we should all be grateful that they are allowing us this privilege to help them rebuild Russia's inner structures even as we rebuild our own.

While you are in ANY country not your own, that last part is vital to your enjoyment and to our international relations. We make enemies by stereotype, and we dissolve the barriers one by one to become friends. Be a friend!  

Be the best patient you can possibly be!  It will help you and it will make your Pirogov experience rich and wonderful, and filled with smiling people. And it will help Dr. Fedorenko heal you!

While you are a tourist, be gracious. Learn the basic words for please, thank you. USE Google translate - it will help you. Most people do not speak anything but Russian, and YOU are the guest in their country, so the burden to communicate falls naturally to you. 

Show patience and gratitude in gestures if necessary, and with smiles. This is a wonderful city filled with such history and grace, and yes, intermittent strife. Get to know it and to know the staff as you enter Pirogov, and you will leave transformed in many ways. Not only a new immune system, but a new understanding of how small and interconnected (and how alike) we all are, citizens of one small world.  

In earlier postings I showed as much of the city as I could, mostly because it is wonderful, but also because there are those who will come for HSCT less able to navigate the terrain, and I just do not want you to miss at least the glimpse through my eyes, this city.  I have trouble walking, and do need bench-stops, but I also know that if I have something new to see, or a museum of art to devour, I will push my legs to their end point.  

NOTE: So I added also 12 days in London (a little work, a lot of walking) to my 7 days as a tourist in Moscow, and that was my pre-patient work-out plan. 

At home it is easier to not push my legs. And I wanted my heart health and lung capacity to be as strong as possible going into HSCT, so this was my plan: walk, walk, walk, breath deep, push myself, be healthier entering HSCT.

The healthier you can be going into HSCT and the better prepared in all ways for the onslaught of it  will make a world of difference in your side effects, and your management of stress, and in your enjoyment, truly, of remaking your immune system. I hope you will come in prepared to be the VERY BEST HSCT PATIENT.  It was my goal, and I am proud to say I feel (and am told) I met it.

The quotes I began with are irrelevant to you as a patient for HSCT. The quotes I want to convey are the ones like this:

“But there was another class of people, the real people. To this class they all belonged, and in it the great thing was to be elegant, generous, plucky, gay, to abandon oneself without a blush to every passion, and to laugh at everything else.” 

and this one, too:

“One does not go to Moscow to get fat.” 

For some reason the food seems to have taken on too high a profile, and hospital food is, by its nature, blander and kinder to the body's digestive tract than any of us would ever truly want. But we are not here for the cuisine  - go to France for that when you can do soft 'stinky cheese' and everything else. For now, add in the things from local market (watch pasteurization, buy processed jams, etc. and a little spice you like (no ground pepper) and you will soon find you can adapt well. The first few days are hardest, as your palette must make huge adaptations from the tastes/flavors you've enjoyed normally. Just be aware, the food is wholesome, no-GMO, and served to help heal you.

Photo:  Meal cart (4 times a day) from which our own in-room (sterile) plates are dished, this time with Sasha helping out Olga (Food service Olga, not nurse Olga). These people are just hard workers, just like everywhere, but they like their jobs, and like working at Pirogov. It shows!

I have even tried the famed cow tongue, just because it would disappoint me in myself if I did not. And I found it very tasty, though hard to get past the concept. And I readily eat all manner of  other odd and disgusting things, so the problem might eventually be one I'll overcome. It was tasty!

More food is offered than I can begin to consume, and some is still a challenge. I have, admittedly, sent fish back to the sea, as well with other things, feeling guilty each time. By now, I understand better to stand and point, communicate the items I will eat as they dish my plate. No sense wasting food anywhere.

And I have come to really love the rich oatmeal, many soups, the boiled barley with gravy (depending on what meat is added). The boiled apples (which I look forward to and savor sliced and plain on cuts of fresh white bread- yum). Early in the month, I liked a thin glaze of French jam to underlie that sliced boiled apple. By now, the flavor of the apple seems not to need any enhancements at all.

And you, too, will find your palette changes over time. With the huge issues we have in the USA over super-saturated flavor foods, the problem we bring is far worse than the problem we have while here.

Part of why we need HSCT is our food in the USA (which GMOs are banned throughout much of the rest of the world, having been proven to alter the very DNA of our basic immune T and B cells, putting us in line for HSCT. Oversimplified, and certainly another post another time.

But consider what food means to you during your chemo and gastric assault, etc., and try very hard to eat healthy. It will help your HSCT.

As Updike said, you do not go to Russia to get fat. So try not to go on and on about your culinary disappointments. Just add some things into your ample fridge that get you by, and move forward.

NOTE: My tourist days at the Marriott Grand Aurora near Red Square - Updike was wrong. The breakfast buffet was absolutely astounding (try the smoked salmon, etc., etc. etc.) But they're not in business to built a new immune system for me. 

The Team Fedorenko 

The people of Dr. Fedorenko's team are amazing! It did take some ice-breaking, some work, even some well-placed nurses' break room treats on regular basis to bridge some of the language barriers. A smile, positive gesture, chocolate and special treats these nurses might not ever buy for themselves - I'm always sure smiles appear over such little gestures (and goodies) and a smile is an open door in any language, any Nation. Get to the shared smile, next you'll find a friend.

Here is my lifesaver (having now fully earned his t-shirt I brought to him from California), Dr. Denis Fedorenko. Young, energetic hematologist who loves nothing more than to heal! He told me he does not so much like the holidays and the weekends, he loves to heal.  Wow, huh!

He normally is always in blue, so this is a collector's item shot of him out of his natural garb, but it represents to me what this man is, and what he has done for me, healing my autoimmune system. And, yes, he has legendary kind blue eyes for which he is famous. But more, a kind and beautiful heart, brilliant intellect, and those I value highest. A truly good man!

The people you will meet, be taken care of by, learn to understand and to truly become friends with, perhaps life-long, are on his remarkable staff. They are efficient to the core, from my experience, and while some equipment here is, to an American, outdated, the drive to heal is unparalleled. You can just give yourself over to them. 

They seem to have magically pre-treated all the possible worst side-effects and nasty episodes of pain, nausea, etc., I expected and which, for me, never amounted  to much at all. I will go home with all my creative ways to whine and tuck them away for when I deal with my Neuro (as if).

This is a good place to do your HSCT. Would that everyone could do it here, but that will not be possible, nor truly, in the end what we all should do - which is have HSCT near our own homes, safely and covered by our insurance, and FDA-approved so the Tort backlash does not keep our own facilities from healing us. We need to work on that, but that is another page.

Anastasia Panchenko

Today is a special day here. Anastasia Panchenko has started her full-time position as English-speaking assistant and patient coordinator. I sort of made that up. I really don't know her title, but you should see how she bounced in here to tell me and we hugged and hugged and she is so happy.

This is a wonderful step in building the Pirogov team. It is not just that she is an Angel, she has herself gone through HSCT for her MS, and is now totally free of it. She knows exactly what going through HSCT is like, start to finish. She understands her future is her own again and does not belong to a broken immune system. She speaks Russian, English and HSCT.  You will love her. You will LOVE her!

Here she is this morning, when she came to share the news that she is officially at work full-time here today. I love this young woman! She is super stylish, ultra chic - always dressed in the cutest dress, boots (usually black), very cute, sweet and a perfect healthy post-MS HSCT survivor. And her new office is just next door to me - cool, huh!  She chose RED for her new uniform. I'm guessing she will be ROCKING a variety of super-chic uniforms in future. She's a clothes girl, and looks good in anything I've ever seen her in. Mostly she is just darling to the core. And so enthusiastic.

We both had to agree we would not tear up. I kind of want to take her home with me.

I will surely hit and miss introducing you to just a sampling of some nurses and staff here - there are many here. Some are shy and don't want a photo, and some, I fear I have still not quite got the correct name (by pronunciation here to help incoming patients) but if I err with my chemo brain, I will correct. These are people who will forever link you to your Russia experience, none of those will be Putin.  

These are people like you. This is what lives are like, day in and day out everywhere - no matter the name of the country. We are all so much alike.

You will see these beautiful women often, as they do your IVs, blood work, stats, and on and on. Everyone works, everyone has multiple roles and they all seem to really love that they work here, healing patients.  Left is Olga, then Gala, and young Sasha at right. These women have won my heart, and I love each one as a friend. We work at our English/Russian, but the smiles and gestures and simple 'Spaciba' we started with still runs through. Constantly! It is "thank you", to which a ready "Pacha" bounces back. (You're welcome). Olga is learning English leaps and bounds and now will almost only talk to me in her new English words. I love this woman!  Gala (pronounced with 'gal' a, and not 'gay' a at the start) is masterfully efficient. Sasha, also, and just gorgeous under that mask, stylish and young and she has some English.

Видно мастера по работе.
The work shows the workman.

Here is my shy AWESOME Nadezda (the z is pronouced like the Je in French, as in Je t'aime).  She turned down earlier attempts at a photo (I always ask - I don't like photos of me taken, either). But at my stem cell celebration, it was impossible for her not to be pulled into frame by Dr. F. She was, pretty much, my first contact after Dr. F. We met early in testing days. She walked me to nearly all of my testing locations, waited for me and brought me back. Silently, efficiently and often fast-walking. Our first bonding was the super long underground trek to MRI, I believe, or something far. And she could see I was slowing my walk and slightly struggling to keep up, so she slowed her walk to mine, and quietly held our her crooked elbow and smiled. YAY! From that humble beginning, we still exchange few words, Nadezda is awesome, I have learned, but she is shy and speaks only Russian. But THIS woman takes care of me in an astounding number of roles and I know she is so much more than just staff. She does my Rx, she shaved my head (and tenderly wrapped her arms around me when my few silly tears fell) and she is tender and deep. AND she is the one who actually transfused my new stem cells on stem cell transplant day - WOW! This woman, silently almost, has taken me safely through start to finish and from her capable hands in this team, has given me a new immune system. You can't know how much I love Nadezda, and I only hope she does. 

There are so many I have no photos of - we will work at that, Anastasia and I. But here are two young women I adore, fully. These two, each with quite good English, are my cleaning staff. I get time with them every day as they work to insure my room is flawlessly clean, antiseptic, particularly in the isolation phase.  Irina at left, and Roda at right, who is shy and took days to finally say yes to a photo.Obviously during the full isolation period, you see she's fully suited. She is beautiful under there, dark hair and shining beautiful brown eyes, and her smile is awesome. I have looked forward to each, and to our conversations in English. Irina works only 3 days a week (her husband does not like her to work) and those 3 days are always my favorites, too. Charming, lovely, engaging. Both of these 'staff' members of the TEAM Fedorenko, Pirogov, are loved by me.

Okay, I'll work more on this, Anastasia says she can help me and so you who come here new and from wherever, and slightly stressed out of your mind for all good reasons - I hope knowing more and more of the nurses and staff (as I add them) will give you comfort and a head start in making them valued, a part of your HSCT angel team. The staff is large.

It takes a good staff to do HSCT. It takes a good patient, prepared and willing to give over their preconceived notions of Russia, or of people who do not speak your language, or even provide medical care in the way you might be used to from back home (God forbid - it's why we ended up coming to Pirogov, because we can't get healed at home yet).

Things that help ease the way - a month or more in hospital isn't easy anywhere

They really do want to help you. I've had them do my laundry (during isolation, since I was happy to hand wash otherwise for the mundane task it was and time it took), and adding a nice chocolate bar to the task got my laundry back in no time, to dry in my room and not get tossed in with everyone's and end up taking days to sort it all out, as I've read has happened. Here's how it went out with smiling Roda, and not even a sock went missing.

I found the bed a bit hard on these old bones, particularly during the Neupogen (bone marrow stimulation period when there can be extra bone pain) but I just double-fold my duvet and use it as a mattress topper of sorts, since I just use my blanket from home over me. If It wasn't just about perfect as it is now, I'd just ask for a second duvet.  You can get what you need to make life more comfortable, and they really DO want you to be the most comfortable you can be. Having my own blanket and down pillow has really helped me not lose touch with some comforts of home, too. Softer, nicer.

A month in a small room can challenge both patients and staff. Do what you can to settle in, and it's really quite more pleasant than it might otherwise be.  Google Translate helps you ask for anything you need. Asking over and over in louder English - not so much.  We are guests in Russia.  Be a good guest. You'll have a much better stay. Imagine a month in a USA hospital room. Has even less appeal to me, actually. We're not on vacation here - we're being healed.

Know you are a guest in a wonderful hospital, and their goal for you is to send you home healthy. Help them do their job. Give them every kindness they deserve and lots of appreciation. We all work better with that atmosphere.

And come and heal - as part of the TEAM of players that YOU are a part of. 

And I will forever remember these people who gave me back my future and life. WOW!  How wonderful it must feel to go to work and know you are actually healing people. It shows every day in the way they work for us. Plan to be their best ever favorite patient. It's a team effort. 

Okay, nap time for me. I'm up to 'full' on all bloods but hemaglobin, so my stem cells have been working like crazy. And I'm going home within 5-6 days.  


  1. You.are amazing Susan Dean ! Your last two blog entries were outstanding, informative, and just totally mindblowingly beautiful. As are you my dear!

  2. Thank you for your incredibly knd words, Sandee. ;) Just trying to pass it forward. I hope it helps a lot of autoimmune sufferers and their families got to the real help they need. We all need to help.