StemCell Boost, a Christmas Present from My Sister/Donor on day 261

Good Morning,

Today we have a happy post, about my boost.

boost

bo͞ost

verb

1. 1.

   help or encourage (something) to increase or improve.

noun

1. 1.

   a source of help or encouragement leading to increase or improvement.

   
   

   synonyms:

   uplift, lift, spur, encouragement, help, inspiration, stimulus, pick-me-up.

      Back when I was a Yacht Broker, a presence at the Annapolis Boat Show was mandatory.  Sail and Power Shows, back to back. One year I had gone up alone early, or it was between shows and Army-Navy football match was going on- anyway I was staying in a rental house a few blocks from the Docks. After a  protracted dinner with friends at  McGarveys Saloon and Oyster Bar , my path home took me down along King George Street, past the Naval Academy.  I have been looking on Google Maps, and there have been some changes to the Fencing, probably post 911, but 25 years ago, there was a stand of tall Rhododendrons and Firs between the street and the tall wrought iron fence.

     I heard some rustling in that foliage, and stepped in to see what was going on. To my surprise, there was a group of cadets sneaking back in over the fence!  As I watched, one kid - a plebe no doubt - was giving a leg up to the last of the upperclassmen.


     When I cleared my throat, they all snapped to attention, and I think it was then the kid realized that he was going to be sacrificed.    I said  "stand down" in my most authoritative voice, approached the fence and then said,
      "Kid, if you learn nothing else here, don't be the last one over the fence".

   We were all a bit tipsy, but as I approached the fence, and assumed the leg up position he had used, he realized that I was going to "save his bacon, and started in with the  " Yes  Sir, Sir, thank you Sir".  I told him not to call me sir.

     I then said to the three cadets who had stranded their shipmate - and were poised to run off -

"I have to walk by the gate. Should I tell the duty officer  how you stranded a shipmate, and deserve to be flogged through the fleet?   The brig is too good for you", and before they could respond, walked away.

 I  have often wondered how their respective careers in the Navy played out.

     Today's post is about a different kind of boost, and sacrifice too, and is a happy day for me.
It involves a medical procedure that spans the ages, from the nano-technology of today, to the lodestone of old. High-tech to analog.

I have tried to be as optimistic about my progress as possible, but here I was after 8 months ,  day 261 of my post-transplant life,  still transfusion dependent, having Iron overload from the 100+ transfusions of Red Blood cells, with a compromised liver from all the transfusions and the meds. And as I told those of you who sensed all was not Hunky Dory,  and called or E-mailed me privately know there was more going on at the cellular level then we had figured out yet. Even so,

Something has been wrong, and much effort has been spent by many figuring out what it is.

Today we look at "The Boost"

Follow me below the fold for a medical update, and  The Boost.  1,2,3,  Jump!

Magnesium and Mg deficiency. Medical and incendiary content.

Today we look at Magnesium.

     My knowledge of Magnesium was limited to it's use in flares, incendiary devices, and when alloyed with Aluminum in Volkswagen engine blocks.  When soon after my transplant,  my blood labs came back showing a deficiency of Magnesium,  I researched it right away.

Specifically we will look at:

* Where does it come from?
* Uses in Early  Photography
* Thermite, VW Engine blocks burning Video. As you will see below the fold, Mg burns hot!
* Medical- Testing for, Symptoms of low Magnesium levels, Deficiency.
* Replenishment. Dietary sources and supplements.
*A look at how and why this has become a problem in the last 50 years.
(you may be surprised )

Magnesium.

Magnesium owes its name to magnesite dumps found in Magnesia, a region in the ancient Greek region of Thessaly, and is also a mythical city mentioned in Plato's Laws.

So here we go, ready , set , jump!

Two Jokes, some medical content.

Good Morning all,

“The most wasted of all days is one without laughter.” – E. E. Cummings

Today we have two jokes intended to raise the spirits of the growing number of Stem Cell and Bone Marrow transplantees who are following this blog. Here is a jpeg you can save and stick onto your email or use as an avatar.

Humor is reputed to be the best medicine.  

 Below the jump there are links to the Mayo Clinic and WebMD and to  a site that will send you the joke(s) of the day.  

Caution: Jokes may cause nasal coffee spew, you have been warned.

So follow us over the jump, already...

T-Day getaway day 239

Good Morning All,  

        After much deliberation, we decided the mental health benefits outweighed the physical health risks, and launched an expedition to Smithfield VA for the annual Turkey day ritual.  Over several rivers, and through the woods, to grandmother's house we go!  Except Dot, the Greenman family matriarch is no longer with us. It is amazing to me how well her daughters have carried on the tradition, not only in the galley, but in the way they can fuss  at the menfolk, who probably need fussin' at if the truth be known. So today some food, and a short side trip into the world of the NC cotton harvest.

So buckle up for a road trip and lets jump

The Song is Ended, But the Melody Lingers On

   Good Morning all. 

      As promised way back on June 22nd, today we will attempt to plant an earworm by means of this fiendishly designed post which will masquerade as a bit of Ethno-musicological dissertation.

    I know there are probably only a few of you blog followers - you know who you are - will have the time or the inclination to listen to all the cuts, all the way through, but trust me, there are a few in here that are most entertaining.  You have all weekend.

     What follows below the jump is a little study - an e-monograph if you will - of "The Song is Ended" from 1927 through 9 decades. The song is presented on Edison Diamond Disc phonograph, a Player Piano Roll, 45, 78, 331/3 Vinyl, and MP3, the youtube poster's digital format. 

So if you have headphones or ear buds put 'em on and let's jump!

Thanksgiving day nears...

Ahoy All,

         No medical content, just a quick note this morning, as there will be a rather lengthy musical post Wednesday night for your over- the -T-day weekend perusal.  It was promised back in June and may just plant an an ear worm.    New subscribers might want to take a quick look at the post on earworms found here: ear-worms-no-not-that-kind.html

      Turkey Confidential 2013 is this year's permutation of Lynne Rosetto-Casper's annual  Splendid Table  call in show- it used to be called Turkey Triage, and had some hilarious call-in disasters. Most notably,  the  one from the "guys" who were handling  "Cooking the Turkey"  in their new deep-fryer who had a "football accident" and tipped it over in the driveway mid-cooking.  This year she has an all star lineup and some great "Swanksgiving" recipies.  Check it out, and you can stream it on T-Day from her site, splendidtable.org

Soundtrack:
Anyone else find it interesting that what was a pretty strong anti-draft song has made it into the Americana Thanksgiving  Obligatory Radiocast. 

Alice's Restaurant Massacre Illustrated

( with circles and arrows )

       And as our gummint threatens to start talking 'bout maybe passing some kind of Immigration Reform, here are two 'toons  about the European Invasion Thanksgiving that might liven up the conversation should your table be too quiet.

bon appetit,

Chris and Anne

Songs that just stay relevant. Caution, political content- no medical content.

Good Morning All,

The title track of Bob Dylan's third Album, released in 1964, was The Times They Are A'Changing.  That was 49 years, 9 months, 30 days ago.

Have they?
Are they? 
Will they?

plus ça change, plus c'est la même chose 

The more things change, the more they stay the same.

Today's post is dedicated to Toshi Seeger.


  NY Times obit/article here - Toshi Seeger, Wife of Folk-Singing Legend, Dies at 91

So put your ears on and follow us over the jump.

Day 221 Fatigue

 Hi to all,

    Apologies for the lapse in posting.  inexcusable really, so I will share a few medical and non medical reasons. 

     The 10 year old laptop continued to slow down in spite of being wormed, and boosted, flushed and tuned up. It was on its third battery and second keyboard.  I finally had to admit that working on it was beyond my ken.  Unsupported OS, Screen freeze, a half hour just to get online only to have the screen go black.  It was getting tired.  Overworked? Planned obsolescence? Fatigue. 

     A worthy patron set me up with a refurbished MacBook Pro, and this is the first post on the new to me Apple. I started on an Apple back at the dawn of the interwebs, and I wonder why I went over to the dark side. 

     This 62 year old laptop user/abuser  continued to slow down as well. Between the meds, the tapering of the meds, and the seemingly slow progress of my recovery, I was exhibiting some of the same symptoms. Brain Freeze and fatigue, and a feeling of things just not getting better.

 crumb art available at www.deniskitchen.com

 Ease on over the jump here for a look at Fatigue.

6 Months Old, or is it New?

        It has been quite a while since I posted, some due to computer problems, some due to system problems, my system that is. Here is an update.

               On or about Friday, October 4th I was 185 days post stem cell transplant.  Aside from two hospitalizations for infections since coming home in July, the medicos are satisfied with my progress.  I am feeling a bit frustrated that my blood type has not yet switched to the B+ of my donor/sister, and that I am still transfusion dependent, but I am told this is not that unusual. We are taking steps to force the blood type switch: I am now off the two immunosuppresants (tacrolimus and prednisone) and we  are experimenting with Rituxin.  It is also a possibility of getting another shot of Laurie's Leukeocytes. 

     As it is now, I have many of the same characteristics of a 6 month old -  virtually no acquired immune system, nor any of the inoculations for childhood diseases, and to varying extents sleep/nap patterns, diet, and diaper usage. But I am walking a little further each day, and have been repeatedly told I am going to rest, not exercise myself back to health.  Mask and gloves on the rare occasions I venture out in public, still observing quarantine, no travel, etc.

Update on my father:

       Also on Friday morning, my father passed away, in his own bed, with my sister in attendance. Here is a facebook posting from Paul DeGeata, ( some of you may know him as the Capt. of The Victory Chimes)  the nephew of Nick, one of Bud's Army buddies...

My uncle Nick emailed me to tell me his close buddy, Bud Siegel  passed away at 6:30 this morning in Long Island, NY. 

I got to know Bud over the last 20 years. Sometimes people slip away unnoticed. I hope you'll indulge me my memories because he's a man worthy of notice. 

My uncle Nick is 95. Bud was a few years older. The pair made Airborne History making America's first combat parachute drop with the 509th Parachute Infantry in North Africa in 1942. They fought across North Africa, Jumped in Avalino where Bud had to pretend to be a patient from an insane asylum as he was led by an Italian monk, through a German Patrol looking for paratroopers; they landed at Anzio where their outfit went through its numbers three times because of casualties. With Darby's Rangers, the 509 took a mountain (Venafro) the Germans held in 24 hours  that the 45th Division had been trying to take for a month.  

The 509 led the Airborne Invasion of Southern France. Bud, a Captain in A Company at the time, drew up the jump list so he was the first paratrooper out of the lead plane to start the invasion of Southern France. They fought in the French Maritimes and were called to Belgium during the Battle of the Bulge. They held a very important cross roads in Belgium during the Battle of the Bulge. Bud and his jeep driver were ambushed bringing entrenching tools to his company so they could dig in the frozen ground. He  was wounded and captured by SS Troopers. He understood enough German to know that the SS sergeant told the soldier guarding them to take them behind a snow bank and shoot them. Just then an American tank rolled up and he and his driver had just enough time to escape. Years back, Bud gave me a brass whistle he was wearing that stopped a German machine gun bullet fired by that SS patrol that ambushed his jeep and blew it up with a Panzefaust, he said the whistle probably saved his life.  While Bud was recuperating from his wounds, my  Uncle Nick was one of 6 of the original troopers in the outfit who was still standing after the Bulge. There only a 58 others out of a Battalion that usually consisted of more than  650 men.

Both men always said they were living life on borrowed time since WWII. Both lived worthy lives and had long distinguished careers in uniform, Bud a cop, Nick a firefighter. Both worked with disadvantaged kids in their retirement years. The pair used to entertain their outfit with songs and poetry at 509 Reunions and Airborne Banquets up until about two years ago.

To say they were part of the Greatest generation is an understatement. They are two of the best men I've ever met. I feel for my uncle Nick today, very few 509ers are left. RIP Bud, it was a great honor knowing a man like you.

-Paul DeGaeta

And Back Home Again

     Annie and I were able to drive home on Monday, after another spell at Duke, both in and out-patient.
Tests, Labs, and exams  showed infections of unknown origin. The treatment was antibiotics and anti fungals.
This stay at Duke was another great educational opportunity for us both, as we struggle to understand the terminology and conditons that our Medicos have spent years studying.  At least we now feel that we can pose relevant questions.

      This was a bit of a close call, with the high fever.  The lesson is to wear a mask, even if I am alone on the beach until my immune system has a chance to start acquiring a library of all the stuff out there that a normal immune system deals with every day.

    I am feeling lucid enough to trust posting some of the Blog entries I have been working on,
stay tuned.


C

Back at Duke

     Last Monday Anne and I were walking our mile on Radio Island Beach. At 11:00pm,  100.4 fever sent us to Carteret General  ER where we were kept until the fever broke, and sent home before we"caught something really bad in the ER".  0800 the following am found us at the Raab Clinic where they stashed us in a small exam room, ran labs and got a dialog going with Duke.    IV antibiotics were started for suspected possible pneumonia and staph infection on plastic catheter tubing.

     Admission to Carteret General was arranged, and I moved across the street and got settled in. After Hickman catheter was removed ( with the tip saved for biopsy ) and an  IV was started for meds and blood products.Chest x-ray showed fluid build up in and around lungs.

     And so on Friday the 8th of August I set off for Duke again, strapped down in the back of the Ambulance. Blew the inside left rear tire coming into Kinston.  The Medicos called around and there was a Dukemobile just up the road in Smithville, and I was trans-shipped right outside the McDonalds Drive-Thru there in Kinston.  No one laughed when I asked if Fries came with it.

     Got to Duke and the Night Doc said he had never see such complete and thorough documentation and set of medical records arrive with a transfer from "outside".  It gave me a chance to brag on the Raab Clinic, and CGH.

     So I have been here for 3 nights, and Anne has been up for two, staying with Robin and Willie. I have had  more Chest X-rays, a CT Scan, multiple labs,  tests, a new PIC line ( double Lumen )  installed ( very cool, got watch the positioning on ultrasound screen. The Guidance system also has a tiny gps in it, an works like the rigs for running underground lines, knowing where they will pop out it the ground!)

     I will be up here for a while, until we can get me balanced again and the risks of congestive heart failure and fluid filled lungs are sorted out.    Stay tuned.

Chris

Back Home

Hi there Folks,

     Back home after  a 1 day/2 nights weekend getaway at the Duke Adult Bone Marrow Penthouse in Durham. Blood Tests, a transfusion and some IV Magnesium, and I was pronounced good to go by the presiding Duke and Duchess.

     We did the right thing by going to the Emergency Room on Thursday night, and if I have another episode of a high fever and chills, I will do it again. We had my abandon ship bag packed ( two pr Scrubs, First aid kit, benadryl and tylenol, disposable underwear and gauze pads, two Buffs, wool socks, two long sleeve shirts, a towel and a copy of The Hitchhikers Guide to the Galaxy)  and only had to grab the tackle box with the meds, and my dopp kit, Kindle, ipod, and Medical Records loose leaf,  and we were out the door.  It was a good drill, made it to CGH in about 14 minutes without using the flashers or exceeding the speed limit.

    The nursing staff at Carteret General, both in the ER, and when we were in a room on the new 4th floor was absolutely wonderful - professional and caring,   I must mention Erin, who was most helpful even though she was training two new nurses and had her hands full with other patients.  And even though I had only been inpatient at Duke for 6 days back in April, (right after the transplant when I really tanked and was not very lucid) there were several of the same nurses on duty and we had a good reunion.

     We learned a lot about hospital procedures, and the ride in the transport ambulance  left me wanting one for a camper conversion project. The trip to Duke actually took the same amount of time as the GPS lady that lives in Anne's dashboard says it should. 3hrs 10 min. Of course the GPS cyborg lady does not have to stop and pee, and we rarely made the trip in under 3 hrs 45 min.

     We hope this was just a hiccup in my recovery. It was really freaky the way all my numbers - Whites, Reds, and Platelets - dropped so precipitously from what they had been only 12 hrs earlier.  In the wake of what  must have been some kind of food poisoning they had plummeted, and I lost a lot of ground.  Current thinking is that  the tremors, high fever and nausea produced a Cascade of  Cytokenes, and the chaos caused by a bunch of cytokenes shouting orders to my new baby immune system and the dwindling numbers of my original B predators caused some hematological  cannibalism to occur, which I was able to slow with an antihistamine, and once the fever subsided things started to settle down.

     Some good lessons were learned, not just about packing our own food for a while longer. And I have a bunch more materiel for an upcoming post entitled:

"How to Survive a Hopsital Visit" or "Tips for Staying Alive in Hospital".


Cheers,

Chris

Day 115 update

We arrived home in Beaufort on Saturday the 13th.  Following Wednesday we had an appointment at the Raab Clinic. It was great to see everyone there, and it was so nice to be back in our own bed, with familiar surroundings.  Walked downtown and saw a bunch of people, it was such a relief  to be back home.

On the 24th we went back to Duke for a follow-up visit, and all was well, discussed Bone Marrow Biopsy and things were looking good.

Back home that night, at three am I woke to a fever of 100.4, chills and tremors.  Blew lunch.
( a pastrami sandwich from Elmo's Diner in Durham, and dinner at the Outhouse Steakback in Goldsboro)

Went to Carteret General ER at 4 am, blood numbers dropping.  Got a room and have been in for a day and a half.   Fever off and on, Blood numbers still dropping.  Now it is Friday the 26th and Duke wants me me back so badly they are dispatching a coach to convey me. Will be there by evening. So....the drama unfolds. I will keep all y'all posted.

Cheers,

Chris

100 days

100 Days, a time span not graced by the usual cues of Weeks and Months. 10 Days longer than 90 days, the three month quarterly catch-all. 90 days doesn't sound as long as a quarter year, because it's not. A quarter year is 91 1/4 days. Awkward.

Follow over the jump for a look at some other 100 day milestones.

A Letter from the Caregiver on day 92

Soundtrack: The Beatles Two of Us

Dear Friends and Family,

     Remember the song….99 Bottles of Beer on the Wall, take one down, pass it around, 98 bottles of beer on the wall?  Well, we’re looking at only 9 bottles of beer (days) left on the wall, give or take a few. 

We’re homeward bound soon!

Where are we now? What’s next?

     A big part about recovery for Chris is attitude and he gets an A+ for that. However, it’s also about balancing his blood chemistry. He is making steady progress. His levels, though low, have stabilized and he has had no infections for almost 3 months.  Fewer medications are being taken now to help maintain an environment in which his sister Laurie's stem cells can create a new immune system without attacking Chris’s body from the inside out.  It will take several months for his marrow refinery to be working at full tilt producing blood levels within the normal range. 

     During this time, he still has to take precautions when in public places and his contact with people will be limited. He must be extremely careful not to cause inflammation (from the sun or other) so that his new cells don’t go crazy and aggravate his body causing a severe case of graft vs. host disease.  His body’s new immune system is similar to a baby’s and it will take time to build up new immunities. Hopefully in a year’s time, he will be able to receive immunizations to protect him from things like tuberculosis, measles, mumps, whooping cough, etc., etc. So until then his movements are guarded, as are mine, so I don’t bring any hitchhikers home especially from school.

     The initial outpatient clinic phase of his treatment at Duke is nearly over.  That said, we will return to the land of Dukes and Duchesses for frequent checkups.  In addition to the continuing care from the ABMT clinic,  Chris will renew his relationship with the Raab Oncology Clinic in our home territory.  He will need  weekly visits for blood count monitoring, red blood transfusions when needed, and administrations of medicines that will help keep his system balanced as it continues to recovery.

     Soon, very soon, there will be only 1 more bottle of beer on the wall and we can return to our beloved Beaufort. We think of our time in Durham as 99+ days out of 360 towards the treatment time devoted to returning Chris back to normal.  Normal?  Well, we all know that Chris is far from being normal and we like him that way, but the “new normal” is something to be embraced as he recovers to live life again to its fullest.  And there’s no better place to do so than at home.

Homeward bound with love,

Annie

Caretaker extraordinaire who survived Chris’s stem cell transplant.

Join our blog here http://capnsmarrowblog.blogspot.com/

Graft Versus Host Disease (GVHD)

GVHD is the medical shorthand for Graft Versus Host Disease. 

Today a quick, non-geeky look at the phenomenon of GVHD, and how it differs from Transplanted Organ Rejection as seen in the previous cartoons noir post.(click here )

     For those of you just joining us, the procedure I have undergone here at Duke Med is technically an Allogenic Myleoablative Stem Cell Transplant or Bone Marrow Transplant. 

Allogenic: Taken from a donor (as opposed to autogenic, where they take your own cells out, hit you with some chemo, then put your own cells back in, or the syngeneic using stem cells donated by an identical twin)

Myleoablative: High-dose chemotherapy designed to completely wipe out the diseased blood-forming cells in the bone marrow. This chemo can cause side effects, often severe.

SCT: Stem Cell Transplant 

BMT: Bone Marrow Transplant, often used interchangeably with SCT 

As part of this I volunteered to participate in a clinical trial, A Randomized, Multi-Center, Phase III Study of Allogeneic Stem Cell Transplantation Comparing Regimen Intensity in Patients with Myelodysplastic Syndrome or Acute Myeloid Leukemia.  The regimen intensity refers to the pre-transplant chemo. I was randomized into the High Dose group, read about it in this post from March 27th. .

Let's Jump right in for it is pretty fascinating...

Transplant Cartoons Caution:Humor Noir

This is the first in a series about our Immune System, Organ transplant, Stem Cell/Bone Marrow Transplants, and Graft Versus Host Disease. Heavy subject matter, so I thought we should start light with some bootleg 'toons.

Ok let's get somewhat serious over the jump

Ear Worms (no, not that kind )

The Dreaded "Ear Worm"

from the German  Ohrwurm

We have all had it happen. A snippet of a catchy tune or jingle that gets stuck in your head, for hours, sometimes days.

Maybe just a short phrase of the chorus, maybe the hook.  When I was working at Chesters ' in 1969 I had  "Celia, You're Breaking My Heart " plague me for three days.

So Friends, Romans, Countrymen....Lend me your ears!

Jump on over the endless tape loop for a look at  Ear Worm acquisition and removal.

Sun 1 UV ABC's, ratings, indices, and more

Sun 1 UV ABC's, ratings, indices, and more...

      According to my Dermatology Duchess, a specialist in Transplant and Melanoma  patients,  sun exposure can trigger Graft vs Host Disease ( GvHD ). Protection requires not just  sunscreen, but clothing cover ups  for even a  short  car ride on  sunny day!  (Think newborn baby skin ) Since I will be living with this to some extent for the rest of my born days,  I have been studying  up on Sun Protection.

       My only alternative to become nocturnal, and for me, that is not yet an option.

      Today's post is the first of a multi- part series. There will be plenty of cartoons, and I will intersperse them up with some music posts, a series on the immune system, and any medical updates. This one is a little longish, the rest will be more compact.

     This topic has become much more important to me in the wake of my Stem Cell Transplant, as I am now at great risk of complications that can arise from exposure to the sun. This is not just because I now have new "baby skin",  the chances of kidney failure and vision loss are compounded by my compromised, albeit brand new, immune system.

To get things cooking, today we will lay some ground work and have a look at

* some definitions,
*the Visible Light Spectrum,
*UV  ABCs
*UV Index
*Your Skin Type, your propensity for burning
*SPF ( Sun Protective Factor ) rating for Skin

     If you are in your middle years or beyond, chances are you didn't do much in your youth to protect yourself from sunburns.  We usually started our summers with a burn and peel cycle, but the public consciousness about skin cancer was not as elevated back then as it is now.

There is a lot to cover, or uncover as the case may be, so jump on over

Cabin Fever and our Cure.( non medical )

Cabin Fever and our Cure

We are now on a Mon/Wed/Fri schedule for blood draws, labs, and IV meds, so we have Tuesdays, Thursdays, and the weekends off, and we are getting a little stir crazy. Cabin Fever. The soles of my feet are starting to toughen up a bit, which makes walking more feasible.

From the little porch on our apartment here in Durham we hear that lonesome whistle blow several times a day. (Listen to it here Amtrak Whistle) It has been calling to us, so we started planning a round trip by rail to Greensboro.

A dear friend from Connecticut had sent us a check  with the caveat that we not use it for Medical bills, but to treat ourselves to something special.

My Hemogoblins were over 8, other counts pretty stable, so after mentioning it to the medicos and not being expressly forbidden so to do,  we bought Round Trip Tickets online, downloaded the pdf file onto a memory stick and had it printed at Staples on Tues at 11:00am.

At 12:17 we hopped on the Piedmont at the new station in Durham and  59 minutes later we were in the the Greensboro Depot.

Details of the excursion are below the jump.  We visited two museums, which was a bit ambitious, and  had lunch at a cool burger joint.  It was a challenge to pick a soundtrack for this post, as there are so many train songs.

The State of My Pate

A round or two of Chemotherapy usually results in some hair loss.

This can be the cause of angst and low self esteem in cancer patients, as covered in this monograph by Dr. Tanveer Baig of the Royal Marsden Hospital in London.

The Psychological Impact of Chemotherapy‐induced Hair Loss

It is also enough of a problem in children, that Mattel is going to make a Bald Barbie, with wigs, hats and

scarves.

      I had prepared for hair loss, as I posted back here.  I have now lost all my body hair, save my eyebrows and lashes. I am getting used to it. Regardless of the ambient temperature, it always seems a little chilly, and I usually wear a  Buff Do-Rag, with UV protection  On the plus side, no worries about  having a "Bad Hair" day. 

I have been loggin' my noggin, got a clean bean.

Shaving your head takes the guesswork out of going  bald

So head on over the jump for a look at some famous baldies, 

and a snapshot or two of the current state of my pate. 

Jean Stapleton aka Edith Bunker RIP

Soundtrack

All in the Family / Archie Bunker's Place Opening Credits

LA Times OBIT

Meathead, Gloria, Archie and Edith

What is there to say? 

All in the Family, and later Archie's Place  were pivotal TV sitcoms in the not quite 

post-racial and post-Vietnam era in US history.

HULU has 4 episodes you can stream for free.

 Good for flashbacks, or for anyone born after say 1990 who may never have seen the show. An interesting look at Archie Bunker, "the beloved bigot", who took the role as a tongue in cheek way to point out the bigotry and double standards in 70's and 80's society, many of which persist today.  

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