Wednesday, April 30, 2014

46: MAY is CIDP Awareness Month

A battle is won by him who is firmly resolved to win it.
Leo Tolstoy,  WAR AND PEACE

I am still in isolation, finishing up the final weeks of my own journey to a CIDP-free life, but want to bring these things to your attention today. Remember, CIDP is very rare, but you can insert any of the list I'll try to remember to finish up at bottom of post - they are less rare, and ALL do well with HSCT.

I'm cheating (energy choice, I'm running low) and am posting pretty much what I just put on my FB page for CIDP Awareness Month. If you have CIDP, you're aware of it every nano-second, believe me.

Invisible to many who look at you, it is debilitating for motor, sensory, and sometimes cranial and central nerve involvements.  Let's eradicate it along with all the Autoimmune Illnesses that are its cohorts and part of the same disease: AUTOIMMUNE ILLNESSES.

NOTE: We're so rare we didn't even make the following list (CIDP) and I know Lupus should also be on here, too - ah, there it is: Systemic Lupus. These are other manifestations or 'symptom' diseases of an overall immunological system failure:  Autoimmune Disease is the Proper Diagnosis, and these - well just the ways it manifests, often in clusters over time.  And Lymphoma and Leukemia are AD cancers (as are many others).  

Treating each separately diminishes the scope of what is now a true American Epidemic in Autoimmune Diseases. And it confuses the patient's care and delays getting to HSCT as even a thought process.  I know! 

I am not a medical expert.  

I am not an activist. 

I am someone who got GBS/CIDP and who hopes to help others find their way back to health. Nothing more, nothing less.  

Thank you for reading my blathering attempts at getting this vitally important information out there.  

And thank you all for your good wishes. I think "hope" and "prayer" are good things. I think ACTION is even better. My parents always taught me:  "God helps them that help themselves". YOU must decide your own path to health. I choose ACTION for my life!

That's a wrap. I've got a bit of napping to do and a book to read. 

A' bientot!

45. A Conversation between 3 HSCT survivors, about how things are - Some Thoughts:

У́мный в го́ру не пойдёт, у́мный го́ру обойдёт.

 Literal: A smart person will not climb a mountain; A smart person will go around it.

NOTE: This is a screen shot reproduction of a private conversation on a closed FB group. I thought the exchange had real importance, and since my energy is low, thought it would be nice to share it here.  I asked each person who is part of the conversation, and both were enthusiastic that I post and didn't want their names redacted. 

So here you see cooperation toward our shared goal.  It is easy to not catch emotion in written text, as we all know. Spoken conversation gives us so many important clues. But lacking that, we just have to be very clear to ask for clarity when needed so the meaning is accurate, don't we. If you ever confuse a writer's intent or emotional context, it is so much easier to ask for and get clarity.  No back-biting - clarity. Yes? If you are ever confused by the 'tone' of something I say, please ask me where I am coming from. It's never anger or rancor, truly. It's passionate, often, particularly about HSCT for all those who need it. 

Susan Dean (USA) I am in HSCT now here in Moscow, Russia with Dr. Denis Fedorenko
Ramgopal Vallath (India) did his HSCT in Chicago, USA, with Dr. Richard Burt
Linda Martin (USA, currently UK) did her HSCT in Chicago, USA, with Dr. Richard Burt

We agree we are 3 of the luckiest people in the world!

How unfairly life's good fortune is sometimes distributed.
                                  Leo Tolstoy, WAR and PEACE

This does not represent a breach of their rights, nor mine, and no other portions of the longer conversation needed to add in. This is enough:

See how simple it is to unite our understanding toward a shared important goal?

A quick note to RamG, who is my HSCT MS friend, but we have not yet met:  I will one day meet you! Thank you for all you do to get the information out for HSCT. It takes us all!

A quick note to Linda Martin, who is my HSCT (CIDP) friend and solid mentor and sometimes travel companion and, almost without a doubt, a life-long dear friend.  We think a lot alike, and we walk about the same pace, too. "Thank you for everything, all your info, all your support, all your goodies, all the shared laughter, and for giving me your carte blanche to quote you anywhere, anytime.  I love you!  Photo (below) is Linda, dedicating a fine Pear Ale to me upon celebrating her immense upward trend in bowling scores (shhhh, I won't tell). Linda not only went back to her career work full-time after HSCT, she took a company position in UK, to boot.    BACK TO LIFE! HSCT

UNRELATED NOTE FROM ISOLATION: Doing fine, my mini-blinds are now open (thanks to Dr. F's shared laughter and intervention) and I have now got the most gorgeous springtime view of trees blossoming, again. When you do your ISO day, open your mini-blinds!  Der!  

Tuesday, April 29, 2014

44. International Travel Pack for Me: Susan style, + Tech

Не мечи́те би́сер пе́ред сви́ньями.                                                 

Cast not your pearls before swine.

 Literal: Don't cast beads in front of pigs.

Many have asked me to give a list of what I chose to pack to prepare for HSCT in Moscow. I'm doing this one fast, but I did think about it in the night last night and hope it's helpful. 

The HSCT in MOSCOW list of foods/clothing others have provided seem more than adequate, but I did not pack anything but the Lipton tea flavored drink packets I like from home to flavor water.  I figured I could find everything else here, so left all that heavy other food stuff at home. I found everything I needed here, within a pleasant walk of hospital, so seems to me the only factor to consider here is ambulatory ability you might consider - this part of Moscow is NOT very handicap friendly. (map to stores shown below)

I will admit I have been known to pack Medifast food if I'm on a buying trip that I fantasize doubles as a diet, but in fact, I also admit willingly it almost never gets dipped into nor used and so is just extra baggage with good intention. I hope I get points!  

Clothing: I want light natural layer-able clothing, everywhere. I will not sweat out Florence in anyone's drip-dry wicking polyester sport clothing, sorry. I prefer the natural cooling of either silk or silk/wool blend, the finer the better because it's comfortable. AND bonus: light to pack, so I don't end up with 100 euro over-packed fee per bag by tucking in a few things for the return trip (usually antiques, true).  So light-weight counts for me. I have favorite travel slacks that weigh almost nothing and are super high quality thin wool fabric. They always look great, never wrinkle. I also toss in jeans, just because, well, I'm American and I need some to feel safe. Cashmere sweaters (shell, over, cardigan) are super light to pack and super warm, comfortable. Heavier wool, not always in my pack, but maybe for Greenland later on. And a good quality rain-worthy light (and probably long) overcoat and I think you can do a trip (like this one) that ranged from freezing sleet to nice sunny warm early summer-like days. And do it with nice form, as well.  That's the all-weather countdown. Adjust for summer/winter, when I try not to travel abroad. And I travel with lots of black/gray, a couple things to bring color in, only black shoes. I could go to a funeral or a wedding, easily - same day. Would have to buy a pair of heels on location, though.

Shoes: My hard/fast international travel rule is "It's not a fashion show - never ever take new shoes". In fact, CIDP has given me restriction that have me traveling with the most treasured God-awful worn out pair of Sesto Meucci 1.5" heel loafers you would ever see. I get scorned looks and bad service in Paris over them now, but I don't care. They help my damaged legs walk almost double what I can do in anything else. Pack for YOUR feet. You will walk more than you imagine, and your feet will thank me. Add in a good gel-heel/ball of foot pad, and they'll send me roses.  I packed 1 pair of 1.5" heeled boots for the cold, and my 1.5" heel horrids for the walking, plus the requisite Puma flip-flops for ISO room 'slippers'.  Nothing more.

CC protection: I am aware of all the problems in walking with ccs. I do have this super-light titanium (or whatever) cc case that I found in Paris last autumn, and it (ostensibly) also keeps card fraud walk-by readers blocked.  Here's the one I have. I think it was 80 euro, shops at the Louvre, but you can find a huge variety anywhere.

Noise canceling headphones:   I have great 'block it out' natural capacity, and so was not so into adding these. But I also know that in hospital we have a tough time blocking ongoing sounds to rest, so I popped for this BOSE earbud set. I used them on the flight over, and I have not really used them in hospital, but would if I needed to. Nights are mostly quiet, and I'm in 329, furthest from the Nurse's station and the noisy activity.

And now the really important stuff

What I do consider, however is what will help me make my trip smooth, like 'glide-smooth' and keep me from wasting any of it trying to figure out where I am, what museum is close, how to communicate in a language I can't even master the alphabet of, as well as keep me online, with email, Face-to-face contact (various apps) and even use my own device to download museum guides so I don't have that 8000-tourist-sweaty strap thing hanging around my neck, and have hands free with my camera if applicable, while using my headphones and ipad mini or my iPhone.

Yes, I am a total MAC-addict. As you can see. If I were a more sleek packer or did not also run a business while traveling, I could do this with just my iPhone and iPad Mini, but we women tend to always err toward over-packing.  My business runs from anywhere in the world from my MacAir (and employees at home), thin, light, doable keyboard for all the correspondence and I need it for all the normal programs I must access to run business. I can't do a lot of things I need on iPad alone, though in a year or two perhaps that will change. I have absolutely NO justifiable reason to have brought along the IPad Air, except that it was new and I wanted to play with it. It's just me. I won't change, don't even try.

If you can do this trip with a Kindle, more power to you! But I have all my tools loaded in mostly my iPhone and iPad Mini, which go right into my purse all the time. Here, in a choir of angels, and only 314 grams, the world unfolds for me.     There are, of course, the usual uses:

A fully stocked library, no trees were destroyed nor environment damaged by ink, chemicals

Any movies or TV series I want, all at fingertips (this is where VPN helps, btw)

 All those apps I think I will want for a particular trip, (usually I imagine I will learn a language). One 'folder' holds them all, and folders are titled by location for me. I use this stuff everywhere! OR imagine I will some day when I have time to sit and learn Russian.  Museum guides are in another folder, unless they're specific to say, Red Square. You organize your way, I'll disorganize mine.  

Most of that is standard stuff, and I'm not trying to sell Mac nor apps - just to remind you that WIFI and your tech is your lifeline while you are here. Please don't forget to prepare for this vital part of your HSCT path.  

So, I wanted to tell you what I think will help a MOSCOW HSCT trip (and any other you make) an easier friendlier world experience for you.  I tend to hoard apps. I also have the few that really work hard for me.  Here are a few I will suggest you might want to use:

Not perfect, but GOOGLE Translate is essential to you being here and able to communicate with staff. As many know, it works with a myriad of languages, uses spoken (activate it) entry and translates in text so the person who you want to communicate with can read in their language what you are saying. LOAD it on all your portable tech items, keep within reach.  Some of the nurses are using it, and I'm sure it makes their job communicating with us easier, too, so familiarize yourself with it if you have it only on a phone. Again, Kindle -you're on your own.

WORD LENS Along those lines, but ultra-cool (Thank you, my son Brett, for finding this for me), this app works using your pad/phone camera and will translate signs, food labels, etc., It's hard to capture in a photo (particularly because I am shaky at this stage of downward bloods) but it does translate word by word.  Again, you can use it with many languages, many travels. A cool free app!

Cultural Differences Guide:  International communication has other important cues that are NOT on an app - Thanks, Eddie Nash for the reminder. We are mini-emisary for our own country any time we travel internationally. Let's be good ones!  Here is a good site to review specifically for Russia visit, but this type of 'courtesy communcation and gesture' guide can be found regarding any international destination:

Currency converter you can easily get to and use is a must. Obvious reasons, I can skip blather here.

POCKET EARTH:  While I fully appreciate GoogleMaps, I depend upon this one in cities around the world. It is an app you can completely download the city's entire map - driving, walking map that is fully useful without wifi, so on the hoof, so to speak. It is awesome in many ways and my 'go to' for wandering and not getting totally lost (which can also be fun, but not while here in Moscow trying to do HSCT)

The photo of it in action on my iPad Mini (above) is actually the hospital lower right, and I can see the path to the main high street where stores are, know where I'm going to get things and know exactly how to get home, even post-chemo and slightly light headed. I didn't mark the route, but will  probably do so and add that in a while.  

Okay, enough  - I'm going to nap a while. I hope this will help you all, no matter what travel you have coming up, and I'm positive it will help Moscow HSCT patients navigate their time here.

I'm about to read on my iPad 'til I can't hold my eyes open, and then navigate a nice nap and let my new immune system continues to grow. Still doing well. 

PS. This is also important:  I did, first time ever, go ahead and register with the US Embassy here in Moscow (online, simple) once I was in Country. That way I get any email notices that might be important safety-wise, plus they know where I am should all hell break loose and they need to evacuate Americans (this was never a worry, by the way - just sounded cool to write it that way).  But I did just get this email, so it does work (partial email, lots more detailed in full):

United States Embassy Moscow, Russia
Security Message for U.S. Citizens: Upcoming Rallies/Demonstrations
May 1 – 6, 2014

U.S. Embassy Moscow informs U.S. citizens and family members that Russian authorities have issued permits for several pro-government and opposition group rallies/demonstrations to take place in Moscow May 1 – 6, 2014. Specifics on these  gatherings are detailed below.

Monday, April 28, 2014

43. Moscow, Russia and Susan's CIDP-HSCT Trip

Во́лка но́ги ко́рмят.
                                            A hound's food is in its legs.
 Literal: The feet feed the wolf.

That might seem a strange quote to use here. Read on.

My friend, Greer, said last night at dinner in SLC, UT, USA, one at the table said Obamacare doesn't go far enough, and that he's been reading about this woman with a rare autoimmune disease who had to go to Russia for stem cell transplant. Greer said, "That's Susan! - That's MY Susan". 

You know I didn't HAVE to come to Moscow (though it's true it's nearly impossible to get this in the USA), but it was more that I had not yet been to Moscow, PLUS Moscow said 'come, we can heal you!'. Let's keep the HSCT dialogue going - you never know how broadly your world can expand until you travel, nor in fact, what the reason for it might need to be. Safe travels, my friends. 

I'm still doing very well, still in isolation, waiting for the magic upturn bloods (Dr F just in, says 1-2 days more to bottom out) and then just time to populate these bone marrow manufacturing wonders inside me so I can come back home - surely only to depart again soon, often, for a lifetime (and healthy!) 

The world is small. We all belong to it, in it. No one should own it. We are in this together!

Each Nation's history is remarkable in time and its 'residue' of history exquisite, as you see here in some of the famed Faberge Eggs. I happen to love antiques, and the time and story they tell, and will be forever fascinated with searching out both.  I will be thrilled to leave CIDP behind me here, taking my better legs and energy back to the joyful task of my normal life, traveling, buying and selling fine antiques and learning the stories they represent. 

I have personally seen, finally, the Faberge eggs - in person. (I had to say that twice in that way because there is still such a "Holy Moly!" part of me).  How cool is that for someone like me? Alongside a myriad other of the tangible wonders of Moscow. I'd been to St. Petersburg before, too, but now I add Moscow and it's a city I will never ever forget for many many reasons. 

It's only the Oligarchs/Politicos who ruin any Country, after all. 

Below is the maker mark: Faberge - memorize it! If you find one, call me immediately (smile)

And I agree with our own Mark Twain on this one, 100%:

HSCT NOTE, Day 3 isolation:

Dr. Fedorenko has been in, my bloods continue to drop, and he thinks 1-2 more days (probably 2) until I am truly neupogenic, upon which time engraftment will begin to bring up my numbers. So a few extra lovely days,  perhaps, to sit and contemplate Moscow, to read and nap, and to decide where my CIDP-free (hound's) legs and energy will take me in Autumn. Always hunting, and need my legs under me to 'find aesthetic food, just the same'.  I LOVE planning my next trip! Almost as much as being in the middle of each one of them.  I'm lucky!

World Cow, (one greener-grass pasture at a time) signing off for today. I have a book to read and a nap to take. It's not all fun and games in here, you know.  Stem cells are working hard!

 (Very old pencil drawing postcard I drew and once sent to a friend, drawn in 1993 - story isn't worth the telling, but I think this is me, still - see me waving at you from somewhere there mid neck?)

Sunday, April 27, 2014

42. What Can be Worse Than You or Your Loved One Being Ill? Being Ill in the USA under Oligarchy Politics

Азбука -- к мудрости ступенька.                                  

You have to learn to walk before you can run. 

Literal: Alphabet is the step to wisdom.

I am only going to post this to remind you to please go WAY back to my BLOG POST #3 at about this point to see why I am here, and why there are millions of people in just our USA who are NOT being healed, but are being 'farmed' for profit-taking by one of a small sub-set of industries who are building from our very bodies and Democracy, an OLIGARCHY where they rule the world.  

RADICAL?  I would have said so a few years ago, in my complacent ignorance, as well.  But not now.  And THIS is vitally important to the HSCT story to healing. You must know this part, too, because you will get no respect from your Doctor at home and will be told to not worry - they are taking perfect care of you. It's a lie! 

I talked HSCT with my Neuro for 3 years! And then I just arranged it myself and paid for it and here I am.  Healing my body.  Sometimes you have to listen to your own research, question the 'norm', and be willing to do what sounds to some to be radical, even rash (because they do not know you've researched the entire hell out of a thing first). 

This following data chart is very old, 2000. We're well into an era that has completely eclipsed this, and the static about OBAMACARE is a smoke screen of epic Oligarchy size.  Why does the USA spend more on healthcare than ANY nation in the world, but stand dismally at only #37 in rankings?  Because  the greed for 47% profit margin on endless maintenance of illness is our medical business model. And it will not only fail for USA citizens, it will kill you.  The story is not one of how it's paid for - it is one of what is the product.  HEALING, research and proliferation of CURE, and we're all home free. But if the current 'normal' of endlessly giving you the next kind of over-the-top too-side-effect lethal drug to remove a symptom or two at a time is what you are doing, it is patient-assisted suicide (which I'm sure the legal teams have investigated) It is murder!

JUST ONE VERY PERSONAL ANGUISH FOR ME THIS WEEK:  A dear 'old' friend of mine found my blog this week (we've been out of touch except sporadically for 35 years) and she found this blog because she is frantically searching how to help her daughter whose autoimmune illness has been 'USA pharmaceutically treated' to the point it is not clear if she will live. My friend believed in her daughter's doctors. Don't we place such trust in them all. And there are good doctors. But they are, for THIS AUTOIMMUNE EPIDEMIC, not healing. They are pimping for Big Pharma, and they are WRONG in doing it.  But they, too, benefit financially the longer your child is ill.  She is one of 2 I know in this same situation at this same time - frantically trying to save her daughter. 

I want to rush her daughter to HSCT, and how to rush anyone's daughter, son, wife, husband, parent to healing after years of damaging 'maintenance' is excruciatingly frustrating, hurts my heart and soul. Will we be able to help her in time? I do not have any idea. Could we have helped her resume her active life a couple or more years back (or in the 11+ years FDA is dragging out the 'HSCT for Autoimmune Diseases' Trials going on in the USA?).  I think we could!   

Add to this one anguished Mom's story, all those you know, too.  How big does it have to get before we realize it's not OBAMACARE - it's the Oligarchy of profit-taking companies who know they can switch off the $$ blocks, and just can't bring themselves to do so because the $$ is too HUGE  - they are not people. THEY are companies. And Citizen's United, in one fell swoop, gave such soul-less entities an even MORE equal role as a voting "PERSON" in the United States. And they vote by using HUGE profit to manipulate our legislators, fund bad electorate 'yes' men - to stop research, stymie and hide viable human and earth-friendly solutions and they think that profit is KING and GOD.   HELP STOP THIS!

So, if you are stuck here with me on these days of what isolation for HSCT process is, please, when you have time (NOW!) drop back to the early postings of my blog, which are essential to why I am here, and why I want your help to get others into HSCT to get their health and lives back.

THIS is not about me - Susan Dean, having HSCT.  THIS is about healing people. LIVING!

VERY OLD CHART - now it is 47% Profit

I think of my new stem cells looking like this inside, with a big RED slash drawn across them.  I personally slashed my Rx bill more than $244,000 per year, (insurance paid, but not working to heal me) and now I'm going to have a healthy immune system. It's not MORE expensive to heal, it is only more profitable to Big Pharma if you never do. Think on that!

I'm sorry! NOTHING I hate more than pushing you back to square one, but please, if you start at the beginning of this BLOG, I know you will understand it better, and know why I am here doing HSCT. 

And now I'm going back into my isolation and to read my book, reply to business emails. Because I have a healthly long life about to be resumed. I am one of the lucky few, who should be a healthy many - help me help us all!

Stay tuned

41. The "Bloods" Roller coaster Ride in Earnest:

Не в силе правда, в правде сила.                          

Power is not revealed by striking hard or often, but by striking true.

 Literal: Truth is not in power, rather power is in truth.

HSCT is the only procedure we know today that can halt autoimmune diseases - (read again)

Just a very short post (YAY) but to tell you that THIS is what isolation and HSCT is all about. These days are when the bone marrow's current supply in body diminish, and we get a bit vulnerable in several ways, (hence isolation) and the numbers are watched closely each day to see where movement is. For these first few days, movement is downward, and then (for me within 2 days of today, Dr. Fedorenko estimates) I will hit low and begin upswing as my new stem cells are putting out excellent new blood cells, the damaged DNA that underly autoimmune system illnesses having been replaced by new manufacturers of fine quality T and B (etc) cells that my body needs to run properly again. 

Here is a quick graphic to show you what mine are doing (yours will be different, but this is what we're at these isolation days: rebuilding bone marrow's manufacturing system for healthy blood cells. Again, not thrilled that my med stuff is going to be internet-proliferated, but I'm older and nobody will ever be tempted to turn me away for a job because I have this prior health issue. I am posting to help you! I already am working for my best boss ever: Myself, and she's fine with having me for an employee, HSCT is a big bonus in my company!  As is health, energy, vitality, AND good customer service. 

This is the magic of HSCT.  And I am in awe that is it both so simple, and so possible. And I am so frustrated that it is so out of reach of so many who need it done.  We'll continue to work on that last part. But for now, I am going to sit back and nap and let my new immune system build itself up.  

Still nothing to complain about - it's been an absolute dream of a procedure to go through here in Moscow, and I could not be happier!

That's all for today! A nap awaits.

Saturday, April 26, 2014

40: ISOLATION Begins, Regimen Outline:

Вре́мя -- лу́чший до́ктор                                 

                              Time heals all wounds. 

Literal: Time is the best healer.  (but THIS staff ROCKS!)

I will try to get all of this right for anyone following for their own HSCT as well as to keep for my guide. It will be boring for others. This is HSCT-specific posting.

Isolation began noon today, Sat. April 26.  Here is what a 1st day in isolation looks like, setting up.

1. My luggage, most of clothing just went to storage

I am pleased to have arranged (or been granted) my own lounge clothes and PJs along with underwear. That beats paper or cloth hospital gowns for 12 days in my book, and I am a happy woman. (Maybe everyone works this out, but earlier everyone talked about hospital gowns only.)

NOTE: I did bring along a hand-held UV wand (internet, around $40-$80 at home). It's about 20" long, with 12" or so UV light (use only facing downward) that I used on computer, ipad, iphone, books, etc. and on my clothing as well, just for extra measure, and Dr. Fedorenko highly approved. I will leave it behind in clinic for future 'guests' since I have one at home, already. Thanks to my son, Rick, for this added knowlege, tool, caring!  This is the Verilux one I brought:

Could easily be over-kill on my part, but I've gone this far and sure do not want to be the first to ruin Dr. Fedorenko's clinic's perfect record on keeping patients alive. So, enough about that part.

2. Fitration system turned on in room, the large flow-way door between bedroom suite and kitchen/bathroom is now to be closed at all times, except short trip to fridge/bathroom, of course.

3. Bathroom UV lighting turned on at all times to control any bacterial growth.  You must turn it off and turn normal light on when entering, then re-start the UV process upon leaving.

4. Double exterior window closed, not to be opened at all for duration.

5. Staff only enters with mask in place. (within 20 minutes of writing that, it changed to full gown, mask, hair covering and booties to enter). NO one gets in without full covering - Dr. Fedorenko, too:

6. (Below: earlier photo, before the ISO doors click, Dr. F was not yet all suited up)  All instructions given for special hygiene washes (2 times daily, one can be following a normal shower), orange label on bottle. NO toothbrushing or oral hygiene other than this red mouthwash, to be mixed at 15/dilution and used 3 times a day. Dr. Fedorenko explains all in detail and is truly magnificent as he does (still, takes notes - yours might be slightly in variation to mine):

7. At my request: Inspection of fridge and instruction on what I may still consume of the self-purchased groceries. By this time I am contented by the healthy and rather bland diet and have no complaints whatever (well, okay -I have not done the tongue still).  From kitchen, microwave oatmeal 30-45 seconds before eating - always!  No yogurt but the baby yogurt the hospital serves. Boiled apples from hospital ok, and also the French-processed fruit jam I had bought. YAY.  Hard cheese okay, but microwave it, please. No chocolate, honey, peanut butter. I do not have fresh fruit, vegetables, nuts, as those were all definitely off the list. Will miss the Russian creamy honey on bread (bread that actually gets moldy if you try to keep it more than 2 days in a ziplock). Apparently they have fewer preservatives and agricultural sprays tainting honey, as well. It has been my favorite small treat. I can still use it in my hot tea, he says, but I don't drink tea.

8. Each day bedding will be changed out for fresh, and room cleaned thoroughly (room already cleaned daily, but not daily bedding changes).

9. Each day while in isolation, gowned/masked staff will clean walls, floors, bedding cleaning time is 1 hour and I will be confined to bathroom for my shower time while that is done. (see below)

10. No longer an option to wash our own dishes, as they now must also soak in solution and be done in special hygienic way by staff.  (This is not a bad thing at all, smile).

11. No visitors allowed. Period. Wifi is your lifeline.  Even Dr. F only opens door slightly now, masked, to talk as he stops by. Harder to hear and understand both, but otherwise he's got to suit up, too.  Write questions for him. He is so good to go over everything thoroughly with each patient.


HSCT process continues as follows (again, for me - this might vary for another HSCT patient)

7:00 a.m. Blood samples drawn (via your port), monitoring each day all levels. Dr. F goes over these with you each day, as well, and tells you where you are in the process. 

Blood pressure and temp monitoring (yourself or you can choose to have nurse) - record:
7:00 a.m  BP/pulse/Temp         1:00 p.m.  BP/pulse/Temp      7:00 p.m. BP/pulse/Temp

Report to nurse via button if top number is above 130, or bottom above 90. Also any temperature rise. They will closely monitor and medicate to keep it where they want it, so this is very important for patient to do!

Also, a scale is in room: record your own weight each morning:  pre-breakfast weight.

7:00 a.m  2-bottle IV (managing meds for organs, chemo post-changes functioning)

Morning . mid-day . evening RX pills per your small prescription pill packet (each person will have antibiotic, 2 different anti-virals and anything added to your specific need)  Pill boxes are marked in English, too, easy to know when to take. Anything extra between you and Dr. F.

Blood pressure and temp monitoring (yourself or you can choose to have nurse) - record:
7:00 a.m  BP/pulse/Temp         1:00 p.m.  BP/pulse/Temp      7:00 p.m. BP/pulse/Temp

NOTE ADDED (day 2) re Rx from home: There can be some changing issues Rx-wise, and while I was easily able to pull up my entire Rx list from computer for Dr. Fedorenko here, I think it would be a very good plan to keep a hard copy on your bedside table during HSCT so he can quickly refer while with you, in case he needs to add/remove anything during this stage. He has it in his medical records, but YOU can have it beside you for quick conference and aid in your care in this way. Dr. F just double-checked mine on one item before adding a small BP Rx. I was happy he didn't need to go review the charts and come back to complete that simple review. God bless whomever set up internet, huh! 

1 p.m. IV and 1 shot of Neupogen given (I thought this neupogen shot was not going to be added back in, but it does go along same as Dr. Burt's program in Chicago, after all).  Go Stem Cells!

Blood pressure and temp monitoring (yourself or you can choose to have nurse) - record:

7:00 a.m  BP/pulse/Temp         1:00 p.m.  BP/pulse/Temp      7:00 p.m. BP/pulse/Temp

2:00 p.m. or so, WASH DOWN:  Room is being completely washed down, including wall, by gowned, masked and hatted staff.  All bedding changed, and dishes are being soaked for washing. This is pretty heavy duty. She has washed down walls and windows, even. I managed a quick photo. 

Trolly next to fridge in anteroom holds all the 'suit-ups' and supplies. Your gauze packs for bathing can be found in the drawer, paper wrapped packets when you run out. 

Meanwhile, I'm finished now in my bathroom 'toilette',  (as the French would call it) too.  I have washed head to toe thoroughly with gauze pads and the clear solutions (2) with orange label, which is totally without odor or sensation, really.  Just clean.  Larger bottle for face, privates, and small bottle is for everything everywhere else (The small one is actually Russian Vodka - imagine)  Cleared of bacteria with solution head to toe (nurse helps with back, too) and then I can dry off and dress.  This act is repeated after my morning shower, as well - 2 times a day we must clean all body.  Literally sitting on the shower bench now with mouthwash swishing (red) and trying to use the rest of my 'in situ' time well while she finishes her work.  THIS might be tougher to sit in a bathroom for an hour than I ever dreamed. But here it is.  Aha! she knocks, and we're done in less than half an hour. We're a good team!  Well, I'm back in my bedroom and she is finishing her job in the anteroom/bathroom. Wow, I am so impressed, truly. 

Bubble, sweet bubble!

There you have it to 3:00 p.m. on 1st day. I will add to post as the day progresses if pertinent, but it's R&R and quiet time from here on out, one day the same as the one before.  

I'm not doing this again - this is Isolation:  day1, to be repeated each day as outlined. You will NOT have to sit through my blog posting of this every danged day, so relax. But you see what you're in for once isolation begins, I hope, and can relax in the knowledge that it, too, is all good.  

And now a nice nap!

Each day for first 2-3 days bloods will drop some, and then they hit that magic day when they begin to rise again. The stubble of shaved hair falls beginning at this point, and we truly have entered 'engraftment' stages. Meanwhile, I am going to stop here and enjoy rubbing my stubbly shaved head a while and just rest and take in this lovely miracle of HSCT. I feel so fortunate! 

P.S. I wanted to show you Sasha, another wonderful nurse I like so much. She has some English and a pocket translator that is orange - cool. Young and so pretty, she and Gala are my specialists at building a new covering for my octo-port each day out of special medical supplies, since the one thing in the world I am allergic to is non-allergenic tape - go figure!  These nurses are amazing. I love them all, and only wish I had Russian words enough to explain how special what they are doing is for all of us. But you can tell, they already know. They're healing us!

39. IMPORTANT NEWS (not news to lots of us, but still)

Уче́нье свет, а неуче́нье тьма.
                                           Knowledge is power.
 Literal: Studying is light; not studying is darkness.

IMPORTANT: France ranks #1 year after year in the Healthcare rankings of the World Health Organization. The USA is currently at #37. 

We have an autoimmune epidemic growing in our Nation, alongside an Oligarchy bent on making more money for themselves, less health for our families. 

I'm completing HSCT for CIDP to heal now (in Moscow, Russia!), but it's hard to get into clinics, expensive to do so either in USA's 1 or in Europe's many.  It should be already (long since now) available readily and affordably in the USA. 

It's NOT readily available in the USA due to blocks in place by BigPharma money because of the truly massive profits in 'maintaining illness' in America. Yet the more effective 'cure' is being ignored and stymied via their 'ad budget' in pockets of legislators, FDA regulators. 

HOW IS THIS POSSIBLE? Because we have not yet all stood firm and said "NO MORE!". Please do before it's your family shattered by something that can more easily and cheaply be 'cured' by HSCT than endlessly treated by lethally side-effect-loaded drugs. 

And, USA - let's stop the photo-op shouting "we're #1", and start to catch up before we LEAD again. Everyone needs to stand up and help correct this wrong. I'll be home soon. I'm going to hold this grudge until we dump the Oligarchy and get our people healed. Stand up with me, please! Learn about HSCT. 

Click this line to read the article and follow more info leads re the research/science, please

This 'ad' was brought to you by my new stem cells, currently re-populating my 
bone marrow so I can be healthy again. 

Okay, next post for HSCT-ready and interested, as I enter the isolation phase of treatment.  The nitty-gritty coming in post 40

Friday, April 25, 2014

38. Just a Note for Jack, Who Searches out Beautiful Places, People, Literature, Music, Minds.

Всяк глядит, да не всяк видит.                                         

                                           Everything has beauty but not everyone sees it.

(This is my 'boyfriend', my husband, my tormenter and the one who challenges me to do it all over again - 18 years married next month - I forget the date, he does not. We're old, but we're still 'hunky', thrilled to fill every day with new experiences and fun, and we bicker, too. It's almost perfect)

Thank you for finding me, too, and for considering the beauty within. I love you! I am doing very well!  Go get 'em! I will be watching. The one hard-fast rule is you DO have to take great photos - you know.

Если бы молодость знала, если бы старость могла.
                                                                        Youth is wasted on the young 

Literal: If only the youth would know, if the old age would be able to.

ps Sorry about bad 'screen shot' presentaion, size - these are so beautiful in right size, display, some of my favorites among many many favorites. And particularly sorry for that black line bad crop on 1st, Sweetie.  Forgive me. I have chemo-fingers.  

Thursday, April 24, 2014

37. RED LETTER DAY: Stem Cell Implantation - We DID IT!

Только добро погибает юным.                                               

                                         Only the good die young.

Well, RED LETTER day for one more! And lest my quote throw you off, knowing that it's far far far too late for me to die young, I am still using it.  I am the oldest person ever to receive HSCT in the Moscow Pirogov treatment program. And I am the first to be 'cured' of CIDP.  Some new doors opened for further advance of treatment here in Moscow!

This will be a short text post. I am going to sleep a while. But it went well. It was intense, but nothing like a Hollywood  Blockbuster. I got very low BP, dizzy, pressure in chest, pressure to cough-feeling in chest, and numb legs, dizzy and the room spun quite a while. but then it was over and within half an hour or so, all machines came off and I felt more or less like me before it. AND I didn't die. 

It is a tradition here to go through a ceremony of sorts, tossing the cryogenic fluid that has stored your stem cells, watching it (and your autoimmune disease) evaporate down the hallway. Here are the pics. Okay, more later. . . . . .   Day Zero is today: April 24. And now I count up.

  TO GOOD HEALTH!  Thank you Dr. Fedorenko, and part of today's team:

Dr Denis Fedorenko

These are a few more of the best medical and hospital staff I have ever in my life had the great pleasure to meet. I will be forever grateful to each, and remember them always.

ps. The one on right shaved my head AND injected my stem cells - cool, huh? She's a GODDESS!

 That's a wrap!