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....







Soundtrack

From Sargent Pepper



     As one of my nurses pointed out the other day, "You are lucky. You can both order from the children's menu and pay with your senior discount."


     I have been reluctant to report on my condition these last six months because I did not see a whole lot of progress.  I had become somewhat myopic, and was preoccupied by the setbacks, the side effects of the medications, and the constant fatigue.

     Anne pointed out all the things that are better than last summer, and better than at this time last year.  What follows is a partial list.


Medications:  I have been able to eliminate several and dramatically taper the dreaded Prednisone down to 5mg/day.

Immunizations:   Although I can not get all my early childhood immunizations ( measles, mumps, rubella; polio , etc.) until I am totally off the immunosupressants,  I have had some of the inactive shots.  I have had my first cold, which has lingered since January, but my immune system is coming up with the right stuff to combat it.

Energy level:  Walking a mile on the beach most days and lifting heavier things. Went for a sail last Saturday.

Weight Gain: Up from 140 to 155 - and this while on the low carb diet required to counteract the cortio-steroid induced type 2 diabetes. ( Another unfortunate side effect of the post transplant meds )

Iron:  The main reason for my bone marrow transplant was that my ability to make my own blood was rapidly diminishing and I had become transfusion dependent.  The main side effect of transfusions is the build up of Iron. One way to measure this build up is with a blood test for serum ferritin level.

The standard range is 11-204 ng/mL    On 8/11/13 mine was 5987.  Not Good.

More on Iron build up is here.  Removal of this iron, or chelation as it is called can be accomplished albeit slowly, with yet more medicines each of which have their own nasty side effects.  The best way is by Phlebotomy, which is good old blood letting. Think leeches.

I have had 4 months of phlebotomies now, and my marrow has been able to replenish the lost unit of blood in the 30 days in between.   Ferritin level on 3/11/15 was down to 4437.

Skin: For most of the last year I had multiple bleeding bruises (hematomas) on my forearms and lower legs.  The skin was paper thin, and would tear open with seemingly no provocation.  It was not unusual to have 10-15 big band aids on at a time.  Now I am down to maybe one band aid if I really bonk my hand or bark my shin.  This is a big deal.

Bones: It seems the Chemo and the meds have induced and accelerated osteoporosis.  I am still researching the best way to correct this condition without taking more medications, all of which have side-effects that to my way of thinking outweigh the benefits.

All in all, the good days now outnumber the bad, and that in itself is progress.

The medicos are pleased with my progress, as are my nurses, but as I enter my "terrible twos" the nurses are refusing diaper changes and warn me they will not tolerate tantrums.


Cheers,

Chris