57. Post-HSCT Fever, and the Billion Dollar International Award-Winning Hospital I Can See from My House

На брю́хе шёлк, а в брю́хе щёлк.                                                                            All hat and no cattle. Literal: On the belly there is silk, and in the belly - just a click.

Well, as if the fire was not enough, I seem to have some post-HSCT something that made me have a fever that ranged between 100 and 102.9 for many days.  That is 37.77 to 39.39 C.  My initial follow-up visit with my hematologist was on day 3 of that fever, and he sent me over to the hospital ER right away. This is my story of the mystery fever.

First let me say I also contacted Dr. Fedorenko in Moscow about the fever and he said it is not unusual post-HSCT and while it is good to be in hospital on outside chance it might turn to spepis, it is really most likely rather innocuous, a viral thing that will run 7-10 days and then will self-resolve. They don't usually know why or what virus causes it, but it does happen. Probably nothing to worry about, but be safe and stay in hospital on IV antibiotics for 7 days.  That's pretty much all of what he said. I was in touch with him every day.

Recently a new hospital opened just within our view to the east from our hilltop home. We've been watching it rise into our view. and it's really not an eyesore.  It is a beautiful building, a jewel for the community (as it has been called) and a state of the art facility that puts it at the top of California hospitals in many ways.  It is filled with the most updated equipment, the finest patient rooms ever (to which I can fully attest, having just checked out of one), and a place you'd want to visit just to see how beautiful the interior and the grounds truly are.  It is a gem!

It cost over  $1,000,000,000 to build.  That's a Billion+.  The following article tells you more about this truly incredible healing facility:

California's Newest $Billion Dollar Baby - Palomar Hospital West

I'm going to post some photos here so you can see what I mean when I say it is truly gob-smacking gorgeous. I've never been in a hospital this nice. Nor a hospital room that has so many plugs for equipment one can only anticipate is expensive and surely can diagnose any illness known to mankind.

I mean this place is gorgeous!  Look:

And the photo below is of my patient room (or one of the 8 floors of others in the complex).  Not only state of the art (has more plugs for medical equipment than you can imagine), the bed is even air-baffle mattress set to flow air from baffle to baffle in timing to keep me (and others) from getting bedsores. I thought that would keep me awake but in fact it was pretty pleasant and did help the very comfortable mattress be even more pleasant.  The huge picture window with view has a night shade that works from my remote, as does all the lighting and the giant flat screen TV.  There is a wall board onto which all my myriad (many many) available helpers names and shifts/ phone numbers are noted for my convenience and someone was always popping in to see if I needed anything - anything at all.   The bathroom alone was finer than most hotels, and if I tell you I had a full menu from which to make selections and I'd phone down my room service order for each meal.  Wow, huh?

Apart from my lovely tiled large bathroom, which enters from an angle-set door to the left of screen behind the bed, there is also a sink for staff to wash hands before and after visit. Also, because my cause of fever was not determined, they fully gowned-up for each visit to my room.  The chair shown in this room isn't as nice as the full recliner I had in my room, and that sofa you see at the end below my huge picture window (with automatic night shade) is a really comfortable bed for a family member. The pull-curtain gives that person privacy from the constant interruptions in the night of medical staff for testing, monitoring vitals and temp, etc.

So the hospital, which is incidentally an International Award-Winning Architectural Achievement, (you can look it up, or in fact I can link you here to all the awards this building won - there are quite a few).

Awards won by this hospital for architecture, design, state of the art medical facility

New Facility Becomes Only Hospital Project to Receive AIA BIM Award 

Even the construction company won awards for this building (click line)

AND it also won honors in the Medical facilities, as well (click line)

I tell you all of this not only to brag on our new Hospital that I can see from my house, and an drive to in less than 5 minutes.  I tell you this because this hospital cannot perform HSCT for autoimmune illnesses. Hence forcing me to go to Moscow for my HSCT and pay for it myself, out of pocket.

For my fever, however, I am completely covered because this hospital is also a Kaiser-Permanente hospital. They share the space/cost with Palomar Medical.  And I have Kaiser-Permanente.  We have total coverage, no co-pay at all. We have the top of the line insurance, but we couldn't get K-P to approve HSCT for CIDP. They do HSCT every day for a myriad of other diagnoses. Just not for autoimmune yet, in spite of huge evidence over many years that it has a very high cure rate. And in spite of the fact that my maintenance treatment was over $260,000 a year (Drs included) and they paid all of that for 3.5 years - would have gone on until I died of it or the side effects of treatment regimen.

So my fever, fully covered, took me to this fabulous 'hotel' like hospital with room service and every imaginable bit of equipment, staff, testing.

I must have had 90 vials of blood withdrawn over 5 days on promise of a firm diagnosis for the fever. I didn't want to photograph my arms, but here is a variety of colors that are now my entire arms, hands, pretty much:

In addition to myriad blood tests at all hours of every day and night, I also had chest x-ray, whole trunk CT scan and probably other things I can't remember now. I was tested for so many diseases it seems amazing to me.  I learned I am the most healthy person ever and that there are literally hundreds of things I do NOT have. There's comfort in that.

However, nice as my several Drs were, and I like them all, including the 2 from infectious diseases, none of them could tell me what was causing the fever.  I became the mystery patient.  I felt very much like I would have made a great episode for "House", the TV program we used to love to watch.

So, by the 8th day, when my fever began to come down on its own, and stayed down relatively low over a 24 hour period, and Dr. Yee came in to say I could probably finish it out at home if I wanted to get released, and that they still did not know the cause, well, I jumped at the chance to leave the awe-enspiring hospital of the future and just be at our fire-saved home, where I am writing from now, 9th day, with a normal fever for me of 96.8.  Who knew!

Frankly, Dr. Fedorenko knew.  I'd told the hospital Drs that I was in touch with Dr.F. each day and that he said it would self-resolve between 7-10 days, and was a viral thing that is never easy to diagnose but which sometimes causes a fever post-HSCT.

I'm pretty sure the hospital bill, with all that testing, will be upwards of $40,000 range for 5 days. That is what I paid to have HSCT in Moscow by Dr. Fedorenko, a 36-day in-patient stay at a non-state of the art older hospital without perfect rooms, fabulous views, (though I did enjoy my pine and birch trees), and a sometimes difficult to anticipate process without patient handbook.

I just am posting this to make perfectly clear the differences in the USA and European medical model.  For the USA, pharmaceutical company sales and medical equipment sales drive our expenditures for medical care way to the top, above any country per capita spending.  And yet we rank 37th Internationally in healthcare delivery.

I think it's nice having a fabulous hospital, but if I can't get healed there, but can only be offered endless maintenance drugs and ineffective treatments that make me sicker in the longrun, something is terribly wrong with the business model. When the control is in the hands of Big Pharma and medical equipment manufacturors, because they have more money than God now (after years of 47% profit on keeping us all ill enough to need meds) and they can buy legislators (as we know) and can block FDA to the point that a cure for MS, CIDP, etc., etc., etc., that has a proven 85% cure rate is not going to get approval from FDA until perhaps 2024, there is a HUGE problem in our Nation.

In Europe, the point is to cure the patient. Not to make endless profit mining the pharmaceutical value of their illness, like a giant profit farm, disregarding the health and viability of the patient's life, destroying it and that of the families into which the ill person must be accommodated.  They think they are in business to heal. What a novel concept!

It's time for us to all work to change the USA business model. There's nothing wrong with Obamacare - well, there is, but it's minimal and has to do with lack of single-payor organization. But what is wrong with our healthcare delivery system in the USA is HUGE and it's your health and mine, and that of our children and grandkids that should be catching our attention - not how lovely our new hospitals are, or how many new machines they can use to test you.  If they don't intend to heal you, what's the point?

I hope you will become aware of the massive problem we face, and how important it is for us all to vote our way out of this mess, and into something more like the European model, so the cost of healthcare in the USA can come down and the cure rate and our international standing can both go WAY up.

It takes a village! It takes action on all our parts.  I hope this fully illustrates the differences in the beast driving our Nation's (unhealthy) healthcare system and shows you we need to all work together to change it.

Next time it might be you or your child or grandchild who has autoimmune disease. It's horrible! There is a cure. HSCT has been used for more than 35 years. It is not new science. Big Pharma is blocking the passage for use via FDA and meanwhile people are dying. It's murder!

I was fortunate. Fortunate to be the kind of person who, even quite ill, would do the research. I was fortunate to be able to get into a foreign clinic. I was fortunate to have the money to pay for the treatment and to travel to Russia (or several other far-flung European locations). There is one faciltiy doing HSCT for autoimmune disease in the USA - Northwestern University, Chicago, where Dr. Richard Burt is in stage III of trial to get FDA approval. His research is what is being blocked, strung out forever. A drug, no matter how many side effects or how effective it is, can be approved by FDA in as short a period as 18 months.

You know the problem we face. I had to get very ill to learn all of this.  I hope you don't.  Help me to change this. DO NOT VOTE for anyone who takes campaign money from BigPharma. YOU are voting against your best interest if you do. Write your congressmen and tell them you won't and that you want Big Pharma out of GOV decisions and out of the FDA.

YOU have power. I hope you will all use it.  Pass it on. SHARE my blog, please. The more people who understand, the closer we are to being #1 in healthcare with a lower expenditure than we have now. If you want a better healthcare system, get that 47% profit-taking killer, Big Pharma, out of the driver's seat.

Help me!

56.  FIRE!  Just 46 Hours at Home, Evacuated for Wildfires

Из огня́ да в полымя́.
                                     Out of the frying pan and into the fire.
 Literal: From fire to flame.

In case you wonder how I'm doing, I can tell you I'm doing very well.  Well enough to handle more than I'd have hoped. 

Well, more accurately, I can report that within just 2 days of arriving at home (46 hours, really) I was well enough to pack up quickly the most valuable small antiques, our essentials (whatever could be grabbed in about 20 minutes by 3 of us including Jack, my son Rick and me), and evacuated just ahead of the wildfire that engulfed our hilltop.

This is me, driving the last of 3 loaded vehicles from our driveway with the starting point of the Cocos - San Marcos Fire begins to really rage across the street and behind our neighbor's home.  This is how it begins.  We have been evacuated for such fires now 4 or 5 times This is the 2nd of those we thought would take our home.  We have been lucky!

In the end it took 5 of our neighborhood homes, 2 at the end of our street and within 1 block of our home, another about 1.5 blocks the opposite direction, and 2 within under half a mile.  And we were out of our home for 5 days.

My immune system and my stress levels holding up just fine after such a test, we were so saddened by the losses, but also thrilled to learn that our home was saved. Not only saved, but in nearly perfect condition and the entire surrounding landscaping and orchard - not even scorched.

The skill with which these California Firefighters work is truly incredible.  Almost a fine choreographed ballet of air assault and ground assault, and the precision of a surgeon's scalpel in carving out what will be saved and what will burn.

The haunting beauty of the photo above belies the abject terror that is a California wildfire driven by fierce Santa Ana winds blowing hot air west from the desert.  Included in the fight to save our home were 22 military aircraft in aid of the ground assault levied by the firetrucks (too many to count) and firemen. 

Here is what they face. This is where they put themselves in order to save homes of people they don't even know.  In this fire, probably arson along with 9 other 'set' within 2 days (criminal investigation ongoing), just one death reported (a body found in an open field, perhaps a transient) and 3 firefighter's injured, none seriously. Wow, huh.  In all, I believe 22 structures were burned in our area, though 5 in our immediate neighborhood. In 2007, the last one we evacuated for, over 1200 homes burned. In 2003, another that evacuated us, 2500 homes were lost.  We were lucky!

The skill of these men and women who choose firefighting as their career is truly awesome, in the deepest sense of the word.  And our immense gratitude to them cannot be put into words. And even with their best efforts, 5 homes in our hilltop neighborhood were completely destroyed. 

We stayed at my son's home nearest our hilltop, and in fact we were able to see our home from there using binoculars. Able to see it still standing each time the heavy smoke moved or cleared a bit, and to worry anew each time the winds shifted and took the fire in another direction until it fully encircled the entire hill area.  We were sure it was gone. Then we saw it standing and hoped that maybe we'd get by with just massive smoke damage but at least have a home.  

Us returning home at the end of the evacuation period, up the hill. And the firetrucks going home, as well. Every hillside is burned black, but they will green up and grow lush again before long. Nature renews itself.

For the 5 days we were watching it, evacuated, I can say I still was a very good HSCT patient, napped regularly as the HSCT fatigue demanded, and in the end, I am fine.  Well, I am still healing, I should say.  

Not what I would have hoped for for my homecoming and 3-6 month healing period's opener. But on the other hand, we are so grateful that when we did get to return, we found only minimal smoke damage and some damage to our roof which will be 'healed' by a new roof and a thorough pro-cleaning of the interior. Minimal! Compared to what we were sure would be a total loss.  In fact, here you can see that not only did these firemen save our home (and many others) but they also saved landscaping around each home so that the feel and beauty of the neighborhood remains.  

Here is our 'heliport' (large paved patio), not a bush singed. The orchard that stretched down the hillside left of frame is completely saved as well.  One of the local deer was in the orchard when we were allowed to come home. Life goes on.

So with HUGE gratitude to our California Firefighters, Military air support and everyone whose good thoughts and prayers in our behalf, we are back at home.

I can't tell you how good it feels to have a home!  To have my beautiful new immune system AND a home to heal it in the rest of the way through.  

We are so lucky!

And SO grateful to these and others who saved our home!

Yes, we are back in our home. 

I can heal in my own home, for which I am immensely grateful. 

And now I think I'm going to lie back and nap, and heal.

NOTE:  A few of these photos are mine, but not the majority. Not the ones of the fire - just the ones of evacuating (up our driveway) our yard and of the 2 homes that burned in our area.  I do not know the photo credits for these photos, sorry. 

55. Back Home: May 12, 2014 

A man on a thousand mile walk has to forget his goal and say to himself every morning, today I'm going to cover twenty-five miles and then rest up and sleep.          Leo Tolstoy - War and Peace

до свидания

do svidaniya (phonetic - say it)

"good bye" in Russian

__________________________________________________________________________

Just one quick 'update' and to let you know I am home, the trip was fine, and I'm feeling great!   Yes, it's 4:08 a.m, May 13 now, and I am awake after 12 hours or so of 'catch-up' sleep. Yes, I'll start working on jet-lag today. Yes, I feel fantastic and I am home!

Traveling back home after HSCT is a challenge, but one with a goal so compelling, it makes all the stories lighter, the help along the way sweeter, the touch-point on one's thousand mile walk - well, almost glowing. 

Unsolicited Advertisement: When a company does a great job at what they do - someone should say so. So here is my shamelessly HIGH recommendation for British Airways (per usual). Courtesy shown re med (HSCT) traveler from assists through an 'opening' upgrade to Business Class lie-down when available this trip - without me even asking. Totally awesome cabin crew.. 

LA-London-Moscow-London-LA. They lost neither smiles, luggage, me, plane nor my highest respect. 

FLY BRITISH AIRWAYS! Always good to give credit where credit it due!

_____________________________________________________________________________________

But I am ahead of myself. Just wanted to say that my 3 a.m. departure from Pirogov was both smoothly choreographed and perfectly carried out - testament again to the full care and commitment to the patient, afforded the staff at Pirogov. Yes, hospital driver/car takes care of it all, and yes, was well-tipped by yet one more grateful post-HSCT patient. 

Packed! CLICK A PIC! Photographed luggage for trip home (so much simpler to show image to your wheelchair helpers en route, plus makes finding lost luggage ever so much more likely should you and your bags end up in different parts of the world, almost quite literally (which has happened to me). 

Dr. Fedorenko has reviewed and delivered your essential medical records (yellow packet) which he has prepared for you to take home to your local (follow-up) medical team, along with copies of any MRI, etc. and you see those tucking into my carry-on bag. VERY important, don't forget these travel in cabin with you.  Far right, my final Moscow sunrise. 

Bon voyage!  

Everyone's travel home will be as unique as is their HSCT experience. Expect to tire more easily than you imagined. Expect a few more things to take longer than you'd like.  Expect the same amount of time to go by faster in any other passing than while you're spending it getting back home.  Rest whenever you can. 

Be kind to fellow travelers and to staff. Don't expect too much of yourself, and conserve energy. Ask for help, be patient. You are still a patient.  

Travel is exhausting when you're in the best of health.

 

I can't think when arriving home was more compelling. It made me think of (and not comparing here, as it's a paltry and critical difference) flying home after combat or war. Both urgent and hopeful and deeply essential to me - that destination.

Home

I feel great! Better even, having slept for about 12 hours straight. I'm committed to finishing my healing at home, just as dedicated to the process my body is completing as I was so far in HSCT. I hope I have few 'blips', but if there are a few, I'm up to the task of meeting them head-on and the best patient I can possibly be.  I have a follow-up appt. set with my Hematologist here in about 1 week.  

My own bed at home feels twice as wonderful as I've imagined it did for these past 8-9 weeks (remember, I was on the road several weeks ahead of arriving Pirogov) AND my memories of everyone who helped me through HSCT are twice as deeply treasured, as well. 

I have allowed one little souvenir into my luggage (apart from the fridge magnet from Olga) and just thought I'd show it to you here - my little reminder of the Good young Dr. Denis Fedorenko and his TEAM PIROGOV. Perfect, no?     

 My OTHER souvenir?  Well, of course I also have my elegant brand new immune system. No more CIDP for me. Wow, huh!

Okay, 4:40 a.m. California time, USA. I'm rolling over and going back to sleep. 

Thanks for following. 

May your journey to HSCT be as truly superb as mine has been, no matter where you're able to receive it. HSCT is the only thing known to arrest the disease progression for autoimmune illnesses. 

54.  PEACE! Odds and Ends at the End of Pirogov Stay, and then HOME!

“In Russia it is always the future that is thought of. It is the crops next year, it is the comfort that will come in ten years, it is the clothes that will be made very soon. If ever a people took its energy from hope, it is the Russian people.” 

― John Steinbeck, A Russian Journal

I am transformed! In numerous ways I will never be the same as I was only months ago. It is that way when we risk, when we travel, when we seek our own healthy future, and when we look deeply at the cultures that, together, make  up our world.  

I am so grateful for each of my transformations while here, the greatest being a whole new immune system within, which gives me my future planning and life back. And is a gift also to my family and friends whose lives have been impacted by having an 'ill' member within the ranks. It's hard on everyone. It challenges all. It robs the entire family of an essential life force within their own lives, and isn't fair to anyone.  

That said, I have just some scattered add-ins today. Only 2 more nights at Pirogov and then I make my way HOME. Will continue to add to the blog, but not so often now. I will be moving through my own normal life and will try very hard not to let this become a forgotten toy dragging on a string behind a happy toddler's path forward.  I care about us all!  YOU matter to me. YOUR future health matters to me. 

There are very real problems to be worked on to help change the reasons so many are having autoimmune illnesses. I am not an activist at heart. But I think I will hold a bit of a grudge against those companies whose lust for money and power leaves so many damaged people in the wake of their fast-speeding yacht-like trajectory to Oligarchy in America (USA).  I hope you will help me!  LET'S MAKE A BETTER FUTURE where we don't worry which of our children or grand-children will be the next to be hit by autoimmune illnesses.  I need you! We all need to work together on this. 

It is not a partisan or political issue - it is our basic health and future.  

The Truth About Pharmaceutical Companies  = YouTube link, please CLICK LINE

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And now - a few parting shots of info for HSCT people about my final days at Pirogov:

First, I will tell you that I have only 4 packets of my favorite type of flavor enhancer for my cold water intake. These are not my favorite ones. I like the Blackberry Pomegranate best. But we stock-piled for weeks, bought them out in each of our local stores (Thanks Jack!) and look - I think this exactly meets my remaining days' need.  And we didn't even do the math. WOW. Feels like we ought to win something for having counted the jelly beans right, though, doesn't it  (smile)

BONE PAIN:  There is some bone pain that goes along with building a brand new bone marrow factory of immune system function.  I'm off all IV meds that helped manage it beautifully for me during this month, and so last night I did have my worst night of bone pain - maybe a 3-4, did take a Tramadol. No huge deal, but wanted to mention it.  (NOTE: It isn't as bad today, but will come and go for a while. I can certainly handle it.)

BP: Along with it, around 2 a.m., I also felt some pressure in my chest.  I did get up and check BP, which had fallen low to 90/60. Then it rose a bit within an hour, and more the hour after, so it's  back to my normal lifelong (non-CIDP) BP levels of around 118/68 by now. 

I spoke with Dr. Fedorenko about it on his normal rounds, and he reassured me it is normal, and the heart works harder if BP drops. But he also immediately ordered an EKG just to be positive nothing at all is going on before he releases me.  

EKG:  Within 15 minutes the EKG Tech was in my room, and the EKG was done, and Dr. Fedorenko stopped by to say everything is completely fine.  How great is THAT for heath care delivery?  I only tell you this story so you will understand that if YOU are a helpful and willing and participating part of your TEAM here at Pirogov, the service is awesome.  I am so grateful for my HSCT, and to Dr. Fedorenko and the entire TEAM PIROGOV that have truly given me my life back.  These people heal. They are not interested in farming endless profit by treating people with symptom-masking pharmaceuticals. 

Let's change our Health Care Business Model and system at home to one that is a 'cure' mentality and not a giant profit base for a few companies to mine.  I'm going to keep talking about this part for as long as it takes to change it. It is part of OUR dialogue to National health. And it is our children's future we are looking to, is it not?  

________________________________________________________________________

PORT  SCAR:  We removed all dressing from my catheter entry point. It is not going to add much to my record for body scars (Greer), but it represents the entire  intrusion into my body - a tiny tiny scar where magic happened. Wow, huh!  Here is what it looks like today. It will look better very soon and then totally disappear.  Note: most of that raw area around it is from the early days when I didn't adequately convey that I am allergic to non-allergenic medical tape.  You probably will have none of that at all:

People will say, "you look so normal".  How will they ever know what a choir of angels has been doing within me?   My bald head will cover with hair again, I will have energy and stamina. I will be as normal as I look - finally!  

But every time I look at someone and think the same, I will wonder what their inside invisible challenge might be. That is another way CIDP has transformed me. I know that invisible and devastating battles wage within so many. We can't see it. Only they know it's robbing them of a full life.  BE KIND to everyone. You don't ever know fully another's plight or path. 

Okay that's all for today. I'm going to shower (late) and read, and maybe nap. And I'm going HOME!

53. Rituxan, Solumedrol Infusion, Removal of my Octo-port - Ready to go HOME

Сме́лость города́ берёт.

                                                Courage overcomes all obstacles.

Literal: Bravery takes cities.

__________________________________________________________

Well, A 2-day period, but a (YAY for you!!) short posting today.  I will cover only 5 small items, and with little blathering (hopefully):

   1. Rituxan/Solumedrol 5-hr infusion

   2. Removal of my Octo-port

   3. YOU MAY ALSO HAVE WON! (funny timing from paying for my HSCT)

   4. Gratitude

   5. Readying to GO HOME!

1. Rituxan/Solumedrol - The final IV:

I had my Rituxan/Sol IV (final chemo) yesterday, May 7th. It takes 5 hours - just an infusion, but slow. There can be some side effects to watch for. Pressure in chest, BP fluctuations, perhaps a few others. I had none of those and of course absolutely no discomfort.  However, I will say that yesterday was my lowest energy day ever, and I know there are some sedative effects from the meds. Some will say Solumedrol (steroid) makes them hyper. Others will have the opposite effect, just being sleepy all day. For whatever reason, I was NOT a ball of fire at any point in my May 7th, and had more naps that perhaps I will ever have in one day.  It wasn't a bad thing.  DONE!

For the HSCT people, just a photo of the infusion to make you familar, comfortable. I waited 'til it was empty - kind of dozed off, sorry. And above the Rituxan, not shown here, is an IV bottle with the Solumedrol, remember, which has administered ahead of the Rituxan.   That's a wrap!

2. Removed the Catheter:  My octo-port - my comfort lifeline, but out it comes!

Gala came in for my morning blood draws (always through the octo-port catheter). And then she returned within 5 minutes to do the very simple and flawless retrieval of the catheter from my jugular vein, where it has been installed for weeks, literally.  A couple stitch snips, removals, of the anchors holding the divice in place beneath our constant bandages, and a pull I really felt nothing from - and it is completely out.  Me holding a tight gauze against the small wound for 3-5 minutes, and and unceremoniously simple single bandage covering the wound is all I have to show. That and my completed HSCT, and such gratitude.  This staff?  They are AWESOME!  And not to totally gross you out, but HSCT people, here are the photos:

The final morning to withdraw bloods, done!

The catheter from my jugular, removed easily, painlessly. This is what it looks like in full:

My lifeline, my pain-free access for all those IV's, blood tests, chemo and med administration - pain free with this 'octo-port'. Ye have served me well, but I will not keep ye!

3. Bonus WIN notice arrived via email:  

Кого жизнь ласкает, тот и горя не знает.                                                           

He dances well to whom fortune pipes.

I know this is just the icing on my cake (and funny, too), but this morning's emails to me contains this notice.

Remember back when we talked about how to pay for HSCT in Russia? And I explained about how I had intended to use some of my Travel Rewards credit cards (no international fees, no limit, no daily limit - no kidding - go ahead and use it CARDS issued by CHASE?).   Well, for having moved my own money seamlessly from USA to Russia, I not only have enough more Travel Points for myself another free RT British Airways trip anywhere, (Europe comes to mind),  I am now rewarded anew with a free companion ticket. Next time I fly, Jack comes with me (or ?) and free.  I think we will be in Europe in Autumn.  Or maybe St. Petersburg and Norway later next springtime.  You KNOW by now I am the world's most consummate tourist. HSCT AND a free trip - WOW, huh!  (smile)

Thanks, British Airways and CHASE!  We'll do that trip to celebrate my HSCT!

_________________________________________________________________________________

4. I am so grateful!       Gratuities?

Не́ было бы сча́стья, да несча́стье помогло́.    

                                                                           A blessing in disguise. 

Literal: I would have had no luck, if not for misfortune.

AND

Как ау́кнется -- так и откли́кнется.                                                              

                              Do unto others what you would have them do unto you.

 Literal: How echo is prompted, so it will bounce back.

In Russia, it is customary and accepted to give a gift, gratuity to one's Dr.. They earn so little, I cannot even put it down in print.  So this week has been a JOY of gratitude and I have been discreetly giving out a little something special to those who served me most, best, brightest and with such great kindness. It has so far been a joy. I am not doing flat-rate. I want those who went the extra mile to know how much I appreciated it.  Perhaps in one or two cases, my cleaning 'friends' will smile even brighter this week, as I wonder if they are overlooked in this tradition.

When you are at Piragov, this part is totally up to you. It is not expected nor required. It is a gift given. So if you so choose, there is never a competition to see who can do it more or better, or more perfectly. There is only - gratitude.  Enough on that topic, yes?  But do not overlook it. It is very European, and perhaps very foreign to many. Think of it as a 'hostess gift' you might leave a friend after a short stay - then think of your new immune system, this team - more than a month in their care. Yes, we pay for HSCT, but as with all things, sometimes a little extra makes you feel as great as it will the person who has gone the extra mile in this with you.  Just sayin'    Little kind farewells - Going home - HOME!

5. Going HOME!  Will be home on Monday, May 12. PEACE!  My CIDP-free PEACE!

I will be home by Monday, May 12. All plans laid, confirmed. I have a couple more days to rest here at Pirogov. And I will thoroughly try to absorb the true medical miracle that has taken place for me here. I have a stunningly beautiful NEW IMMUNE SYSTEM, maturing.  I know there are months ahead that are still part of this maturing process, too - it is not finished (will take 3-6 months, perhaps  more, so some restrictions and perhaps a blip or two lie ahead - we will cover those if/when).  But, WOW, huh!

Оди́н в по́ле не во́ин.                                                                

                                                                   One can not conquer alone.

Literal: Single man in a field is not a warrior.

Краси́во жить не запрети́шь.
                                                                                    Literal: You can't forbid living beautifully.

Всяк глядит, да не всяк видит.                                        

Everything has beauty but not everyone sees it.

ONE NOTE: Also given today, one shot in bum which is steroid to help boost for the trip back home. No pain, just mentioning it for accuracy. Dr. says perhaps one more tomorrow. 

That's a wrap. I have my breakfast awaiting me. And a beautiful Moscow day to enjoy. Thanks for following.

52. Enrichment Library:  Russia - Interesting Reading List, Historical Maps, History and Novels To Share

По одёжке встреча́ют, а провожа́ют по уму́.                                  

                                Beauty may open the door, but only virtue enters. 

Literal: One meets people by their clothes, and says farewell by their mind.

From the start, in building this blog, I've incorporated quotes, folk sayings, and verbal vignettes of thinking and Russian ideas over centuries of literature to help you begin to get a feel of Russia, And I wanted to do one post about travel enriching ideas, in particular. We meet a modern city fully formed, in modern 'clothing' so to speak, when we travel, but if we want to, we can leave it knowing so much more about the virtue of it's 'mind', the vibrant history and heritage of a place.

This is travel enrichment, and actually you don't have to try to decorate your house with THIS type of souvenir of your trip, so extra appealing to someone like me.  Decorate your mind with it intead.

So THIS is that post -

Read about the amazing history of Peter the Great (with wife) or Catherine the Great

Each unfolds a glorious history of Russia and of fascinating time and people

It seems to me that whenever I travel, particularly to somewhere I've never been, it's always been very fun to pick a few period, historical or social layers of it's history and read about that time both ahead of my travel and while I'm there.

Learn more about Russia's last Tzar and his ill-fated family, shown here in photo

Not only does it making walking through the city's museums and architecture that much more interesting, it kind of brings history alive while I'm at it.

I don't mean just the usual tour guide type books, though they're great for navigation and mini-info. I mean whole eras, such as say, Peter The Great's reign, or the Catherine the Great reign and history, or maybe reading about the Romanov Tzars or even WWI or WW11 era can bring you into the visit on any layer, enriching.

Some like to do a city or country based on a particular Author's works, or even in Literary Figures (or political giants) who influenced or moved into and through the city's thread of history.

I always think this has put contextual reference and brings a city to life anew.  Just an idea. If you're trying to think of a way to enrich. I know those coming for HSCT might think it would be hard to concentrate, but you can download audiobooks of most of this and just lie and listen to the stories unfold while you're here for a month at Pirogov.

As example, I have done this on so many of my frequent antique buying trips to Paris, by now I feel like when I walk through that old historied city, I can do it in any era's 'story' and it really does change how the city looks and feels, enriching.  One year I really got into the Josephine Bonaparte life in Paris. The side trips to go see her favorite Chateau, Malmaison, just a short train west of Paris and very easy, was one  of my favorite small excursions. I'd read numerous books, including a really easy-to-digest set of 4, all written by Historical Fiction writer, Sandra Guillard.  Based on all the letters, historical documents, travel records and much date, Sandra was able to really help me enjoy getting to know Josephine.

That's just one example. And I do it for as many of my longer solo buying trips as possible, just to both engage the city and history, and to see history in a different way each trip. Audiobooks are great since you can listen to them while your out walking along or on the flight, you know.

So here is my suggestion for Moscow:  Think for a moment what layer of history most intrigues you - maybe it'll be to do with the Great Wars, (Madonna's of Leningrad" was fantastic for me due to the War and Art themed narrative of what went on in the shelter that is the Hermitage, during the World War II era).  That one is totally set to St. Petersburg, and so you might look more to Moscow topics, times. And WOW, there is no end to the ways Moscow can open its layers of history to you.  Plus you have a lot of time on your hands getting through HSCT here. Might as well learn something fun, yeah?

Follow the path of Attila the Hun through Moscow

Or Peter the Great (c1696 intaglio print, ceremonial entrance to Moscow)

The Tartar Invasion of Moscow (c. 1669 intaglio print)

Or the Great Fire of The Kremlin in 1701 (image: c1700s intaglio print)

Perhaps spend time searching out (online) historical maps and see the boundaries and entire cultures and nations move and shift in this region of our world - it's interesting, and will leave you with a richer Russian experience, a broader world view.

c.1660 Moscow Map by cartographer, Mercator, (intaglio print, hand colored)

c. 1650 Map of Moscow by Merian, important era encyclopedia (antique intaglio engraved print)

c. 1770 View of Moscow, (antique intaglio print, by Werner, hand colored)

I think you get the idea.


A month or more is a long time in one small room..  This might be just what you'll love to fill some of it up with.  Go home with a new immune system and a whole new historical knowledge you could not ever experience in just the same way without your month in Pirogov.

Check back on this posting. I will begin to flesh it out while I'm here, but I'll continue to add to it over time after I get home, too, so it will be of more interest, benefit. So for today, more the idea than the full resource.

BOOKS 

Чтение для ума -- что гимнастика для тела.

                             Reading is to the mind what exercise to the body.

I'll be adding in some interesting titles, suggestions here as I flesh out this Blog  #52. And you can just think of it as the library post. And if you have books you've loved and want to add, add them in comments or email me and we'll be sure to add them.

MOVIES

Same thing applies, by the way, if you're more a movie watcher. You can load a bunch of movies that play out in and around Moscow - or just Russia. Anything from many great romance shows, to awesome spy movies, etc.  So just a thought for enriching the stay - BEING Russia in a way you might not have thought of.

I'm never bored! There is SO much to learn!

One more way to enjoy a city in a totally different way is to drag-drop (to a desktop folder on your computer) lots of early photographs taken in the city, showing both life, costume, and events whose cultural essence will enrich your modern experience. I love seeing a city in that way, too. Again, interest and time. But also a good way to burn off some of the pre-HSCT stress and jitters while you're awaiting your check-in time.

Antique 1880 Cabinet Card Souvenir Photo of St. Basil's, Moscow

You can only pack and re-pack and shop for the pefect travel soap, duct tape, etc. so much after all.  Put more of the experience of a place into your prep and you'll learn to love traveling through time as well as our modern world.  At least I sure have.

But for now, rolling over and grabbing a little more sleep, I think. Immune system building like mad, room 329, Pirogov, May 8, 2014.  And by May 12, I'll  be back HOME!  

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. ” 

― Vladimir Putin

“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.” 

― Lord Dunsany, The Curse Of The Wise Woman

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

― Vasily Karpov

_____________________________________________________________________________

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.” 

― Leo Tolstoy

and this one, too:

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

― John Updike

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.