Friday, May 2, 2014

47. NEUTROPENIC: Stem Cell Transplant DAY +8 

Difficult quote day, but I think this comes closest to appropriate. I have thought to change myself. To remake a faulty immune system torn apart at the DNA level by perhaps GMO and fossil fuel chemicals that we've talked about in other of my previous postings.

I may not be able to change the world's HUGE problem brewing because of the faults science sometimes only shows us when it is too late.  But I did have my decision to make on how I would change my own predicament - and heal from that damage.  I have used chemo to eliminate 90% of my damaged immune system and HSCT in full to build a new fresh one from my own stem cells.  I choose!   I can change myself.    Leo Tolstoy was wrong in this thought.  

We can change the bad things that present in life. We just must be fully aware that with all things come some risk (worst of all, driving to store to buy GMO crap for dinner in our fossil-fueled car, very likely to be killed in a traffic accident - so let's be very real about risk from the outset.)

BODY FORMS EXHIBITION:  This illustration is From the traveling exhibit of the 'plastiform' left after processing away everything else. These are human bodies (actual donated specimen human bodies) human body systems, and shows only a human circulatory system, all the rest of the body disolved away.

Several years ago, while in Denver with son Scott and d-i-l, Amanda, Jack and I joined them for the exhibit. It was both freaky and totally fascinating. Macabre, and high art beautiful.  And back then I did not yet have CIDP, could walk and walk and enjoy the entire exhibition. Amazing (and creepy) as it truly was.  So I'm borrowing from their photos online to show you want happened to me today.  Well, sort-of. To give a visual of the Choir of Angels activity that is happening as my newimmune system is valiantly building itself within.

Neutropenic State

I am still in isolation, and TODAY IS A RED LETTER DAY for me. I have on Day+8 (8th day post stem cell infusion day) gotten to the stage known as NEUTROPENIC.  This is when my dying blood cells are dropped lowest, and the shaved stubble on my head begins to pull off easily, will drop on its own from here forward until I shine like Buddha.

It is the day when we know that engraftment is being successful within my body's bone marrow and that all those stem cells are building their new immune system just as intended.

Below you see (added May 7) my own jots from Dr. Fedorenko as he reviews the morning blood levels with me. I'd graph this nicely were I at home (oh, no I wouldn't - who am I kidding!), but enough here to see the little paper score card stack as the days go by and as your blood level dip and then hit (my 'hit' was DAY 8, post stem cell reinfusion), and upon these your fate in isolation rides, as does your successful new immune system's progress.  Of course, these are talking point notes. The more official version of same info will be a part of your neat medical record which is all in English and in your possession for your trip home, so your support hematologist will have every bit of info at his/her disposal to proceed with your after-HSCT care. And also will have Dr. Fedorenko at a phone call, need be.  Smooth transition, here to home.

This engraftment turning point may happen to you in your HSCT process at Day+5 or Day+9 - we are all slightly different, but it is what we watch for. Anticipate, secretly sigh with relief when it happens.  And it is when we start counting the remaining days of up-tick blood numbers toward going back home.

Today is Friday, May 2, and it is a most beautiful day in isolation rm 329, Pirogov, Moscow

And in fact, a bit like with CIDP - you can't see any external indications as long as you don't pull on my lovely stubbles I'm going to miss rubbing over very soon.  It is within the marvelous human body, going on right before our eyes, unseen.

Along the way, a tiny blip, not unusual. Friends have had this happen, too:

My Platelets also dropped today to only 8, which is below the safety limit of 10, and so I was infused with high-grade robust Russian platelets to bring up that number, avoiding any chance of accidental internal bleeding or even a nasty bruise not clotting. I come home a little bit Russian!  My elegant IV nurse, Olga, - the one with the posed hands and gorgeous eyes I've written about earlier, infused me and her English is coming along faster than my Russian. She's wonderful and I truly love her!

Infustion of platelets, Russian in origin. I am coming home with an added souvenir, of sorts. But Dr. Fedorenko says these 'stop-gap' infused platelets will die in my system within only days, as is the platelet life-span, so perhaps nothing but the fact of knowing some Russians probably saved me today from bleeding internally - and I am grateful.  

Infused in very little time, the weaker and dizzy feeling I was having is also improved. I might do this entire blog entry without thinking of a nap. Maybe not. I'll keep it short.  As you see, done in no time and on to my normal early afternoon 2-bottle IV, as on every day.  These people are so awesomely good at what they are doing. I still have not one danged thing to use up all of the creative whining I'd planned upon. I am just floating along on their plan for my full health. And it's a beautiful thing!

Oh, and the view - well, Jamie said (jokingly) even Ray Charles could not see out his outer window (he's my CIDP-HSCT buddy, and is right next door to my room, and I love the guy) so he's going to go ISO with blinds shut in order to keep heat down in the room. We each pick our higher need. 

But for me, the slip of green, blue, springtime helps my Isolation days be so much more doable. I will show you what my eyes see, since they can't see all the magic going on inside my bone marrow and circulatory system. I am soothed, I am fine, I am CIDP-free!   WOW, huh!

And while I disagree with almost everything Nietzsche said, every once in a while anyone gets a true gem, so I am closing today with his: (yes, I've totally removed it from his context and taken it over with my own, and I do know that)

“...throw roses into the abyss and say: 'here is my thanks to the monster who didn't succeed in swallowing me alive.” 

Now I'm going to lie down, open my ipad mini and continue reading "W" by Sue Grafton, who gave it to me in person and is a lovely customer and 'friend'. I wanted to say, "Sue, I think I'm loving this one best of all - great writing!"    

Nap to follow at will. My body is doing all the hard work here. My job is just to wait it out and heal.  

Should you ever cross this blog - Thanks, Sue, for the book! I'm glad I saved it for now.  

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