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.

ken-burns-pbs-cancer-emperor-all-maladies


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.

Chris




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. We used to wear black armbands 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.


Chris







Friday, January 3, 2014

The Roller Coaster Ride, and Balance. Medical Content


The Roller Coaster

      This morning is a post I have had in draft for a while, and it is for any and all of you cancer survivors, those living from transfusion to transfusion, or those who are newly diagnosed with a blood disorder.


   The reason the roller coaster ride is such an apt metaphor for MDS and the other conditions  is well illustrated in this picture. A winch tows the train of cars up to the apex of the acme, the highest point, and then gravity takes over.  Wheeeee  down you go, and back up - just not quite as high, then down again, and back up, moving more slowly as  on each successive rise you don't go quite as high, and you loose inertia. Physics.

Entropy you can ride in.



So strap yourself in and enjoy the ride after the jump