Sunday, December 28, 2014

You just never know....

They talk about the best laid plans of mice and men.  Well, I don't know how well mice plan but the plans of this man at least are sometimes uncertain.

I had been doing so well lately.  My energy was improving, I have a little peach fuzz hair coming back on my head, my pain levels had increased but I was dealing with it.  Christmas was wonderful.  We got to talk to our two missionary sons, one in Spain and one in Chile.  What a joy to see their smiling faces and hear their laughter again.  My daughter had come from Oregon with her husband and our darling granddaughter.  Our son had come home from Boston.  Life was great!  Then suddenly I began to feel pretty wiped out.  I noticed the beginnings of a fever.  I decided to lay down for a nap but by the time I woke up I felt worse rather than better.  My temperature kept increasing which meant, another trip to the emergency room.  I just love that place.

So, on Christmas afternoon around 3:00 we took off for the emergency room again.  I was not feeling my greatest.  I guess it must have shown since they moved me to the head of the line.  Or, maybe I just get priority treatment for all the frequent flyer miles I have there.  Who knows.  Anyway they got me back pretty quick.  My fever was high enough that it didn't take them long to decide that I would have to stay in the hospital.  They wheeled me up to the 7th floor.  The charge nurse came out to meet us and said "Haven't you been here before?"  It's not a good thing when the nurses begin to recognize you at the hospital.

Snow Goon

So, I spent the next four days in the hospital.  The doctors finally decided I had pneumonia, an infection in my facial wound, and strep throat.   All at the same time!   Oh, and a yeast infection too.

Well, after four days in the hospital I am doing better  but the doctors in Houston tell me that I need to wait a week and become infection free before they can start treatment so I guess my treatment will be bumped back a week.  Not what I wanted but I guess it will have to do.

On a happier note, it has been heavenly having my daughter and son in law here with our sweet granddaughter.  She really wanted to make a snowman which we did.  She has kind of demented uncles (influenced by reading so many Calvin and Hobbs books)  so it ended up being a snow goon.  I hope she isn't damaged for life.  It has also been wonderful to have our son here on break from medical school.  He is a great young man.  We love having him around.

I guess we have a week to burn now.  Maybe we will use some of the time to investigate reconstructive options for my face.  Maybe the snowman could use some work as well.

In the meantime, thank you for all your prayers in my behalf.

Saturday, December 13, 2014

A root canal frenzy

God bless endodontists
So, radiation is a blessing and a curse.  I believe that radiation treatment has preserved my life this long so that I could find a definitive solution that wasn't available a year ago.  But, it hasn't been kind to my teeth.  Yesterday I spent several hours with my dear friend Daniel Burr, an amazing endodontist.  I don't want to show up in Houston with infections.  They tell me that would be grounds to eliminate me from the study.  High levels of radiation damages blood vessels.  In my case the bone has been damaged as well as my teeth.    Yesterday Daniel and I decided to find out just how many teeth might have died due to loss of blood supply.  It was an exciting day.  I had 8 more root canal treatments yesterday, a new record for my friend to start on one patient.  Essentially all of my back teeth on the right hand side but one had died and a few front teeth as well.  That brings the count on root canal treatments to ten in the last two weeks.  I am so grateful to my friend for taking so much time to take care of me.  And to my patients I want to tell you, I'm sorry that drilling is so unpleasant. It rattles, smells bad and is just generally unnerving.  I have done this to people for 26 years and I need to be more sympathetic.

Slightly used mandible for sale
On an interesting note, JoLynne has been researching how my jaw might be rebuilt once the cancer is defeated.  There are amazing things going on.  One of the pioneers is a Dr. Marx from Miami.  He is using stem cells and cadaver bone scaffolds to grow new jaws.  He grows it in the patients back and them moves it over when it is ready.  My friend the oral surgeon just downstairs from me just returned from Chicago listening to him speak.  Where do I sign up?  I need one of those.

Friday, December 5, 2014

Cast off the anchor ropes, raise the sails!

Monday was my last chemotherapy ever I hope.  Only time will tell but I can hope.  I have been bald so many times now I have almost forgotten what I look like with hair.

As is often the case, the full impact of the chemo doesn't hit you until a few days later.  So, yesterday was a hard day physically.  I just felt run down from the moment I got up.  Everything hurt more and my wounds just wouldn't dry up.  When I have a hard day physically it makes it hard to have a good day emotionally.  They go hand in hand whether I like it or not.  I came home at lunch just dragging.  Sweet JoLynne got home shortly after I did.  I'm a little embarrassed to admit that I had been at home crying, but oh well.  JoLynne is amazing.  She never scolds me, just puts her arms around me and tells me "it's going to be alright, it's okay to get discouraged"  I don't pretend to understand why things are the way that they are but when JoLynne puts her arms around me I can physically and emotionally feel the stress flow out of me.  She has something magical about her.  I am so grateful!  The problems feel the same size but somehow I feel bigger with her there by my side

Ah, picc lines, so much

Today I feel much better.  I just woke up feeling better.  They took out my picc lines today.  After four months I was more than ready to be done with them.  It so so strange to have them pulled.  It doesn't hurt but the lines are pretty long.  They kind of just "reel" them out of your vein.

My treatment date in Houston has been moved up to December 29th.  The researchers called and said that my T-cells grew very nicely and are all done.  They have 12 batches of genetically modified T-cells sitting in the freezers, waiting to be injected back into me.  All that is lacking is the FDA to come and sign off on the batches and a free hospital bed.

May God's wind lead us safely there. 
With my picc line removal and the treatment date moved up I feel like a ship casting off.  "Cast off the anchor ropes and raise the sails"  There is something reassuring about being tied to an anchor rope but the reality is you never get to your destination until you lift the anchor.  Raising the sails has risk but the time comes for taking risks if you want to get anywhere.  I'm ready!