Have some Madiera,My Dear

      I was pleasantly surprised to get an email from our niece Eliza telling how her new boss had ripped a celebratory cork on an ancient bottle of Madeira.

  It triggered a fond memory of this staple of  the late "Filthy" Fred Davis'  repertoire, one which was mercifully rated G for after dinner party repartee. Watch for a future post with some racier smut from the dregs of his song bag. that qualifies as well, smut. But socially redeeming, educational and therapeutic belly laugh type smut. Tasteful smut if you will.  But  I digress.

   I dispatched this ditty to Eliza  posthaste, and was relieved to get this reply:

"Oh man, if that was my boss's intention, it sure didn't pan out for him! Ha!"

Got your attention?  OK Corkscrew ready,  Jump

Donor's Perspective part 2; Apheresis

Backing up a little, I found the email exchanges between Duke and myself and Laurie, and reprint edited versions below.  Chris

--------

Feb 6th

Laurie, 

Hey , I am NOT too old to get a transplant, and you are NOT too old to be a potential donor . Duke Adult Transplant Program wants a sample of your  HLA, and will send a kit.

Please email he duchess@duke.edu with your mailing address, and SSN,  Reference my Duke History # .

If you are a match ( 25% chance) we will fly you into Raleigh/Durham for the procedure. 1 in 4 , but hey, we may get lucky, and a matched sibling is preferable to a matched unrelated donor, which they call a MUD.

Will keep you posted, and Thanks..

CB 

 --------------

Feb 28th

Hello Mr. Siegel,

Thanks for checking in.  It sounds like you are agreeable with proceeding to transplant.

We just received the report for your sister's HLA typing late yesterday.
Congrats, Laurie is a perfect match for you!
This means we can start planning any time.

You may tell her yourself, or I can do that for you, either is fine with me.

We will also need to make plans for your sister to visit.  She would need a 1-day visit for physical exam, labs, EKG, & Chest XR, then return at least 5-6 days later to begin the stem cell mobilization process.  This requires 5-6 days of shots to stimulate her stem cells.  On the 5th day of shots we start the collection.  Collection usually takes 2-3 days.  If she prefers not to make two trips, we can coordinate her visit about 10 days before you start so everything comes together at the same time.  This means she would need to plan to stay in the area for about 2 weeks.

We can talk more about this next week, and of course, when you return.

Have a great weekend.
We look forward to seeing you soon.
Kind Regards,

The Duchess

------------

After many phone calls to schedule all the tests we both needed prior to transplant, the dates started to firm up. 

Laurie flew in on March 20, and stayed with old friends in Chapel Hill. Anne and I secured the apartment through Duke and their arrangement with Blue Cross/Blue Shield.  The target date of April 1 had been set by March 5th with  my Day of Ttransplant to coincide. with our father's bbirthday. We wound up  missing it by only one day.

I posted about this here My Sister is A Match! Countdown Starts.

Anne and I moved to temporary quarters in Durham as recorded here Moving Day .

We met up with Laurie on March 24th, less than a Month after getting the news that she was a match. Looking back, and hearing about how some recipients don't find a donor match for Months and Months, and then the donor is from afar, or even abroad , it has been really blessed the way that this whole procedure has come together - Feb 6th Laurie's sample to April 2 transplant, call it two months. And now I am at about 2 months post transplant.  A third of a year. 

OK, back to Laurie's account.

Over the Jump

The Donor's Perspective Part 1

The Duke connected the brother and sister for the first transfusion.

Reflections from the donor, my sister Laurie.


Soundtrack
Great Organ Solo -Power in the Blood
This guy is great, changing presets on the fly, imaginative


    There was never a sense of hesitation when Chris broached the subject of my being a  possible donor. Prior to his diagnosis, I had  shared with my Massage class an oral report on stem cell transplants.. At this point, we did not know if Chris would qualify for an STC,  or if it would be a potential cure for his type of  MDS. I remember ending my report with the story of a young girl and her meeting with her Stem Cell donor after her transplant, and subsequent recovery from MDS.  The class was as tearful as I was. I told my brother that if the time came I would donate. Therefore, when Chris called to tell me I would be receiving a kit in the mail from Duke for am HLA and blood sample, the journey began.

    I called the local hospital in Waterville, Maine to set up an appointment, unsure of what the procedure would be, as I was without medical insurance. When I arrived, I was informed there would be no charge and they would have it picked up at the door and shipped Fed-X immediately, and they would make sure it did not freeze. I called Chris and told him the process was set in motion and it was a wait and see time for both of us. I will never forget when I received the news that I was a match. Actually, I was a perfect match! (First time I had been perfect at anything.)

    After a quick, “I told you I wasn’t adopted!” we made plans for my flight.  I went to all my college professors and told them I would keep up with my schoolwork and be back in 3 weeks. Finding a place to stay in Durham was an answer to prayer. Longtime friends welcomed me into their home for the week prior
to Annie and Chris’s arrival in  Durham. From the moment, I touched down on North Carolina sod I was treated to hospitality that was way more than pleasant.

   A chest x-ray, EKG and paperwork were all I needed to begin the donation process. For five days before Apheresis, I was given two Neupogen shots to stimulate my bone marrow to produce extra cells. Having been a blood donor, I found that the actual shots were virtually painless. But when the Neupogen started to work, it was like having a firecracker go off inside of you. Not that it hurt it just felt like you were being jolted. My  Anatomy and Physiology classes paid off  because I had a good picture of what was happening in my marrow. After the five days of Neupogen, I was ready for Apheresis.


Tomorrow, Aphresis explained

Day 50 ! Condition Report

Halfway there, and a weekend off! No clinic visit until Tuesday am.

Finally starting to feel well and lucid enough to get back to this blog.


   We sure do miss Beaufort, and seeing all our friends, but our digs here are ok, and conveniently located to the clinic, a pharmacy, and groceries. Anne has set up three bird feeders in the pine trees across the 10' stretch of lawn between our little porch and the strip of woods this side of the security fence.  She got an app for her ipad that is a bird book with audio of the bird calls.  There are some different species found up here in the Piedmont than down on the coast.

Mr. Cardinal

    We are still making daily trips to the Duke Adult Bone Marrow Clinic for blood labs and transfusions as needed. This last week I was treated to an endoscopy with two biopsies, and a skin biopsy on my hand.
I am moulting. Shedding my skin. Like after a bad sunburn when you peel. But it is all over. The first to go were the callouses on fingertips and palms, and on the soles of my feet. It reveals brand new baby skin, soft and pink, and highly susceptible to sunburn, like a month old baby would be. I walk as much as I can, and put in at least a mile/day on one of theses rigs at the clinic when doing laps around the unit become too painful.  1000 steps in about 15 minutes on a good day., and no pressure on my baby feet.

 Walking barefoot on the beach is not in the cards for a while.  Our dermatologist has hooked us up with a battery of lotions and unguents, some containing steroids and cortisoids. More Chemicals,sigh.

    All in all I am feeling pretty good most of the day. Still needing long naps, but thankfully taste and smell are slowly returning. Eating has been strictly mechanical, and fraught with complications because the skin on the  inside of my alimentary canal is being replaced too.  It is fascinating to watch the medicos tinker with my meds almost daily based on blood chemistry and a whole battery of  almost daily tests. I have been getting Magnesium almost every two days, IV. Yet more chemicals. Blood cell counts continue to fluctuate, but the whites are holding pretty steady.

     I had been looking forward to filling my days with playing the guitar and fiddle, but it is out of the question for another month or so, until my skin stops peeling off.  Thank goodness I brought the Baritone uke with nylon strings,  as I can noodle around on that and start to build some callouses back up.  The Ipod that Sinbad and Terry gave me just before we came up here has been great. In addition to playing music files, it is an FM radio and has some kind of pendulum in it that functions as a pedometer and tells you how far you have walked, and more.

We had visitors this last week; Beth, Rachel, Sonda, Carolyn, and Barb who took the picture.
We met up at the Duke Gardens, part of their Durham Get-away tour.

OK, nap time, more tomorrow.

C

Caregiver's reflections back on day 30

First,  a huge thank-you to Beth Lindow, Dizy Brown, Susan Johnson, Mark Schurdevin , and all who helped pull off  the Fund raiser at Backstreet last Sunday. Sure were a lot of grey hairs in the photos I saw, and everyone was smiling. The spirit exemplified is what really makes Beaufort the "Coolest Small Town in America".  Congratulate yourselves. Personal Thank-Yous, to follow.

After the Jump,  Anne's take on the transplant.

What's The News ?

 I wrote this song  10 years ago when the "second story songwriters" group would meet in the office space over what is now the Cru Wine Bar. Jim Fodery, Stephen Spitler, and  Lindi Mereness come to mind as being the most prolific. I debuted this song upstairs at Backstreet Pub to an audience of about 20 people while the TV set  downstairs provided an eerie, aural backdrop of bombs and gunfire.  A few days later W made his ill fated announcement of Mission Accomplished. I offer it here as a poem.

What’s the News? 

©2003 Christopher Siegel

 What's the news this year? Come in and sit a spell

 Tune your harp and tell us of the world beyond our keep

Have you seen our sons, gone these weary months

 Off to fight with Saladin, in the terrible Crusades?

What’s the news this month? Come ashore and sup with us

 Have a pint and tell us of the world beyond the sea

Have you any newspapers, lithographs or renderings 

 Of Bonaparte and Wellington, and the fields of Waterloo?

What’s the news this week? Come sit by the fireside

 FDR is chatting on the wireless tonight

Have you seen The March of Time? We had to stand in line

 To see the latest newsreels from the Beach at Normandy

What’s the news tonight?  C’mon  and check it out

 Cronkite’s in our living room on the new color TV

Bouncing off the Satellite, film clips fill the screen tonight

 Death in living color, fresh from Viet Nam

What’s the news right now? Come jog along with me

 Here, put on this Walkman- just listen to those bombs

Have you seen the scenes on CNN? Images of now and then

 Like something out of Hollywood on the far away frontier

Faster than a speeding bullet

Sharper than a two edged sword

Images assault us with a fire that will not cease

And I can’t get a minute’s peace

Since the Dawn of time Mankind has the urge to know

 All that’s going down around town, all around the Globe

If we are Global Villagers, do we need a new Town Crier

 Who doesn't try to tell us what we didn't want to know

For now embedded journalists funded by advertisements

 Spin factoids into info-tainment right before our eyes

And their curiosity over-rides diplomacy

 While overlooking Pulitzers in their own backyard

So what’s your news today? Come out and sit a spell

 I’m weary of the media, and drama that won’t cease

Please tell me something good, right here in our neighborhood

 So I can find some meaning, and we can have a minute’s peace.

What is a Mondegreen? (no Medical content)

.

 WHAT IS A MONDEGREEN?

Technically, it is a result of near-homophony.

A mondegreen is simply a misheard lyric. The word was coined by Sylvia Wright, a writer and editor of Harper's magazine, and  published in Harper's Magazine in November 1954.  Sylvia  recounted hearing the Scottish folk song, "The Bonny Earl Of Morray."

She heard the lyric,

"Oh, they have slain the Earl o' Morray

and laid him on the green"

as

"Oh, they have slain the Earl o' Morray

and Lady Mondegreen."

Listen to it here. ♫ Scottish Music - The Bonnie Earl O' Moray ♫
Just need to hear the first line...

Get it? 

Like " There's a Bathroom on the right" for "There's a Bad Moon on the Rise

or  "The ants are my friends" for "The answer, my friend"," in "Blowing in the Wind," by Bob Dylan

or  "Olive, the Other Reindeer, used to laugh and call him names"

Or these two  from Sunday School 

"Gladly, the Cross - Eyed Bear", and  "Up from the Gravy a Rose'


Ever wonder what those lyrics you are a little fuzzy about really are?   Find  a vast collection of misheard lyrics over the Jump

To our Beaufort Friends

It has not escaped our attention that plans are afoot for an event at the pub.

Brings tears to our eyes.

We wish we could be there. 

Chris and Anne

DOT + 29 Fatique

Day of Transplant + 29

A friend  and stem cell veteran told me before I went in for my transplant that I would not believe how tired I would get. She said that one day her goal was just to read the get well cards that had accumulated, and she would fall asleep just trying to read a card..

Well I can now relate.  The last two weeks have been marked by a fatigue and ennui. Falling asleep in the muddle of a sentence, slow to respond to questions, stuff like that.

Same as Mr.Natch, but without the beard.

These feelings of weariness have been echoed by my son Josh's wife Ramona who is simultaneously undergoing treatment for cancer of the lady parts in Berlin. Her most excellent blog is here. Her post of
April 29th is reprinted below the jump, along with a soundtrack of the same name.