Saturday, April 2, 2016

Three Years Old Today, and a CGVHD setback.

Ahoy to all, and thanks for your responses to my last post!

T+1096 days.  Three years old.   Ain't it funny how time slips away.

They say if you make it 1 year, you will probably make it to 3, and if you make it to 3,  you will probably make it to 5.  Well I am on my way to 5, but not without a price, and confess to being overly optimistic about my progress in my last post.  "Pride goeth before a fall" and all.   In January things started to deteriorate.   Chronic Graft v.s. Host Disease arrived and with it a setback of about 9 months.

Here is a prescient quote from my post back in July 2013, when I was a mere 4 Months old.

"There is also Chronic GVHD  which can show up anytime from now on... I hope Chronic GVHD will not be the subject of a future post, as this drama plays out for me. "

That quoted post is here: Graft Versus Host Disease (GVHD) .  It is a short one with lots of cartoons and pictures and is sort of required reading for today's post, which will be very short.

Well, this is the post I hoped I would not have to write, and I have been putting off writing until today, my third birthday, and at 2 am.  Here goes-

I was feeling so bad.        So I asked my Transplant Doctor just what I had
I said "Doctor"                  Doctor 
"Mister MD"                     Doctor
"Can you tell me"             Can you tell me
"What's ailin' me "            Doctor
He said "Yeah Yeah Yeah Yeah "     Yeah Yeah Yeah Yeah   
You got G V H D

Apologies to  Rudy Clark and Arthur Resnick the writers of Good Lovin'.

Today's Soundtrack:

3 versions of Good Lovin'  
Note how short they are- well under the  traditional 3 minute limit of 60's AM radio - a barrier broken when Bob Dylan squeezed  6:09 worth of Like A Rolling Stone onto a 45 in '65.  B side was Gates of Eden- but I digress.

1965 version by Lemme B. Good   The first recording.   2 minutes.

Cover by the Olympics a month later, charted to #81 on Billboard.      2 minutes

The Young Rascal's 1966 cover went to #1 on Billboard.     2:42 minutes.

OK, got the tunes going?

That quote again -

" I hope Chronic GVHD will not be the subject of a future post, as this drama plays out for me. "

Well here is that future post, the one I so hoped I would not have to write.

Things were going swimmingly and I had tapered off the Prednisone

and the Tacrolimus (aka Prograf )  - side effects too numerous to list

The Cortico-Steroid induced Type 2 Diabetes (side effect)  was all but gone, and I had tapered off those meds too.  No more swollen feet and legs, skin tone coming back, regaining weight and muscle mass, riding my yard sale bike.  I could play my guitar for 5-6 hours without triggering an immune response and cramping in my fingers and hands. I felt better.

But I had stopped paying close attention to my monthly blood lab results, and un-noticed, my liver numbers, specifically the  Alkaline Phospatase  shot back up, and with it gut, muscle cramping, and dermatological issues common to Chronic Graft v.s. Host Disease.   Since my new immune system was no longer reigned in, there had been an insurgency and my warrior cells turned on me again, and they had to be suppressed and sent back for re-education and re-grooving*.  So back on the Meds, get stabilized, start another gradual taper, and ascertain an appropriate maintenance dose.

The good news is that this time I know what to watch for. I am trialing a new med, Jakafi, which my Main Medico heard about at this year's ASH (American Society of Hematologists) convention, and is proving beneficial in some cases.

After finally joining FaceBook in January,  I have joined an MDS group and a GVHD group.
What a vital (and socially redeeming ) use of social media!  The international sharing of information is serious. There are no cat videos or political rants, just questions put to the group-mind, advice to newbies, hand-holding and compassion.  Just knowing that one is not alone in this, this Life Drama in which we have been unwittingly cast, often by a random genetic mutation, is reassuring.  The discourse helps me to stay on an even keel, cope with the daily challenges, and learn more about what condition my condition is in.

And though it has again started to trigger Cytokine Cascades  with cramping in my hands and fingers, I am still immersed in music. In fact  Barstow and The Revamps have a gig tonight at Donna Nyzio's Art Show  here in Beaufort.

So all in all things are looking up, and I am able to maintain a positive attitude about what is going on with my somewhat out-of- control bodily functions and take the days one at a time.  I still set unrealistic goals, and then feel bad when I don't meet them, but hey, who doesn't?    Our local hospital has struck an agreement with Blue Cross Blue Shield NC and will be reinstated in the network in a few weeks, so that is one less thing to worry about.

I am on the right side of the sod. Things could be worse.

More to come, but for now-


Cap'n Chris

* see Firesign Theater, re-grooving from "how can you be in two places at once , when you're not anywhere at all"

Friday, January 1, 2016

2015 Update

Ahoy All!

279 days since my last post, overdue for an update.
1004 days since my Bone Marrow Stem Cell Transplant. ( 2 years, 8 months and 4 days )

      That means I am almost through with the "terrible twos", which have not really been terrible, but I do get cranky if I don't get my nap,   I have managed to stay out of any hospitals for a year and a half, and my Duke Med visits are now Bi-Annual.  The Medicos have allowed me to eliminate some of the meds, and taper off the rest. I have begun the course of my early-childhood immunizations.  

     It is still an upwind leg of the voyage, but I can see the weather mark.

      There is a  blog post in the works- a reflection after 2 1/2 years - about all the after effects of the transplant and the side effects of the meds that I trust will be of interest and service to all of the Medicos and fellow transplantees who have subscribed to this blog- with over 41,000 page views from over 20 countries.  I hope to continue being of some assistance and comfort to those who are anticipating or recovering from a transplant this coming year. Please put me in touch with anyone you know who is facing this procedure.

     My biggest milestone is that after months and months of working at it, I have begun to regain my musical chops.  I have (knock on wood ) managed to convince my fledgling immune system that the redness and swelling in my fingertips is not in fact an infection that needs to be addressed by elevating my temperature, and causing other various other unpleasant reactions.  I have also been able to resurrect most of my muscle memory and fine motor control, and lyrics are coming back.

      To this end I have put together a new combo with talented local musicians to further motivate me and promote my recovery. We are  Barstow and the Revamps and are auditioning Bass players, Reeds and Horns to round out the sound.  

Also new for 2016 is a presence on Face Book .

Heartfelt thanks to my donor/sister,  and to all of you for your support. May health and happiness overwhelm you this coming year.

Cap'n Chris  ( impatient patient ) and Anne (caregiver extraordinaire)

Saturday, March 28, 2015

2 yrs old on April 2nd.

Good Morning.

        I am breaking six months of blogging silence to report on my condition, which I will do below the jump. But first -

The Emperor of all Maladies

Now  as a Ken Burns PBS special airing March 30 to April 1,  next Monday - Wednesday. Check your local schedule.

Here is a link to a Mother Jones interview, and the trailer.


I  recommended this book in my first post back in March of 2013, and continue to.
That it warrants a Ken Burns Special should secure the importance of this book for a long time.

Buy it here.

OK, click below for the jump....

Friday, September 19, 2014

Reunion of Survivors

Last Saturday, Anne and I travelled to Durham for a reunion of Duke Adult Bone Marrow Transplant patients.

Quite a moving experience. It was held in a large conference room at the Durham Conference Center, and there were about 400 hundred attendees.

Two poignant moments -

A MUD  transplant survivor  ( stem cells from a Matched, Unrelated Donor )  got to meet his donor.
Tearful and moving.

and then there was the  " OK, Everyone who is 5 years out, raise your hand "

then 10, then 15,16,17,18,19, 20, and there were still hands going up.  It capped at 25 yrs!

And the technology 20 years ago was pretty primitive compared that of  today.

I am at day 535, or about a year and a half, and as many of the other survivors I spoke with,  I am still adjusting meds to address the GVHD conditions I am experiencing with my gut, kidneys, bruising, fatigue and steroid induced type two diabetes which is not uncommon in the early years.  I will be meeting with yet another medico here in Carteret County next week to get the glucose numbers under control.

No Jump or soundtrack today.
More to come.


Thursday, August 7, 2014

Sun Protective Clothing

"the best sunscreen is a hat and a shirt"

     The Australian Government, a leader in UV research for over two decades, has stated that, "Over-exposure to solar ultraviolet radiation (UVR) can cause sunburn, skin damage and an increased risk of developing skin cancer. Clothing provides one of the most convenient forms of protection against UVR but not all garments offer sufficient sun protection"

    Clothing provides one of the most convenient forms of protection against UV Rays, and has been used since Eve's fig leaf, but not all garments offer sufficient sun protection. 

Below the jump we will examine

* Ratings again: review  the SPF rating
* How UPF ratings are derived
* Composition:
* Cost: some thoughts the economy/false economy of this kind of clothing.
* Sources: a look at several  different manufacturers and online retailers of sun-protective clothing
* The Threads:check out some hats, shirts, pants, gloves, and yes, parasols.
* Do It Yourself:  Fabric, SPF DYES, Spray on UV protection for your clothing.

So  suit up, put on your shades, and lets jump

Friday, May 2, 2014

Day 395:med update, and a look back 44 years.

Good Morning  to all, 

    It has been a year and a month, since my transplant, and I can say with confidence that my condition is improving.  The "numbers", my blood lab results, continue to trend towards normalcy and the good days are outweighing the rough ones. I am not out of the woods, yet,
but I am adjusting to my "New Normal".  Physical Therapy and tapering meds is helping too.

     I had a scare earlier this year with squamous cell carcinoma, but caught it in time and had it carved out.  I think that episode was the cause for the scarcity of blog posts this last winter.  It was hard to accept that I had come so far with the Bone Marrow/Stem Cell transplant to be struck down by a form of cancer.  That is behind me now,  but I can't help but think of how fragile our lives can be.

     For instance, 44 years ago this Sunday an event occurred that should not be forgotten. I still wear a black armband on April 4th.

Follow me over the jump, and through the tear gas to...

Sunday, March 30, 2014

Day 361 - 45 days without a transfusion !

Ahoy All,

     I have been reluctant to post these last three months for a variety of reasons, but after my last labs I can report a definite  upward trend.  My numbers (Red, White and Platelet counts)  are coming up by themselves.  I have now gone 45 days without a transfusion.  It has been about a hundred days since I got the boost from my sister/donor, and it looks like the refinery is back on line, with no evidence of the  9q del genetic mutation or corrupted blood cells. 

     This is a note from one of my medicos:

"We are ecstatic with your blood counts!!!   I honestly got goose bumps when I saw your platelet count >100K.  WOW!   WBC 2K, Hgb 11.5.  This is wonderful news!"

     We go to Duke for an overnight check-up on this Wednesday, day T+365, the first anniversary of my transplant.  We hope that the labs will be continuing this upward trend, and will show that my blood type has flipped from O+  to Laurie's A+.

   What next?    

Tapering off some of the harsh meds, physical therapy to gain back the strength lost from the side effects - muscle wastage and weight loss.   

Risking time out in public without a mask to start building a new acquired immune system. Maybe in 6-months start getting some of the vaccines and immunizations for early childhood diseases.

Continue to adjust diet to offset the organ damage caused (as side effects) by the Chemo, and the meds.  

In short, figure out what is my New Normal.

I promise more posts as my strength and health returns.