Ups and downs

It has been nearly fifteen months since the donor transplant, fifteen months of getting better on a path to normal health.  If the past fifteen months represented a steady incline to better health, I would have the powers of a superhero by now.  Instead, each month represents a series of peaks and valleys with slightly more peaks as time goes on.  It's back to the doctor again to figure things out.

The muscle pain everywhere and now the body rash which looks like measles must be caused by something but so far the doctor's first guess was a miss.  Going to work is the only thing that keeps my fingers from scratching and it also keeps me moving.  I have an honesty dilemma whenever somebody asks "How are you doing?"  It's a kind thing to say but believe me, there isn't time for the truth so I tell them what they want to hear.  "I'm doing great!  Thank you."

Draft: letter to donor

I've rewritten this letter about six times now and I haven't been happy with any version, including this one. It's difficult to tell someone that keeping me alive has improved the lives of others. It sounds very arrogant. I would like to think I have made a difference, teaching children for so long and I believe I have but it's just difficult to put that in words.

This letter will probably be translated into whatever language is needed. I haven't sent it yet so if you have suggestions, please let me know.

Hello.  I am the recipient of your stem cells from November, 2015.   Thank you for your sacrifice which ultimately saved my life.  

Just over two years ago, I was diagnosed with multiple myeloma or bone marrow cancer.  After some genetic testing, it was determined that I should have two stem cell transplants, one with my own stem cells and one with stem cells from a donor.  Without the second transplant of your stem cells, the doctors told me I would not survive more than two or three years. The treatment took almost nine months in Seattle, Washington, USA.  It’s remarkable to me that somebody like you would go through the painful donation process for a complete stranger but please know that you saved my life and I will continue to work to improve the lives of others.  

At this time, they can’t find any cancer cells in my bone marrow.  It isn’t a complete cure but I will probably live a healthy life for decades to come.  I’m not supposed to give you my name yet but allow me to tell you a little about myself.  I’m a 57 year old male, living in Alaska, USA.  I teach music at a high school and I perform with various orchestras.  In the Summer months, I commercial fish for salmon.  

As a teacher, I look at nearly everything as a learning experience.  I shared details about my cancer treatment with my students through a blog. Many of my students and of course my family and friends were very concerned about my health and survival and they all deeply appreciate what you have done. Thank you for your huge act of kindness.

It's cold!!!

It's cold outside and predictions are for even colder temperatures.  They say it cold reach minus 30 in a week or so.  That's cold by any standard but I've never dreaded the cold as much as I do now.  The science is beyond my understanding but for some reason, everything has felt colder since the transplant.  I often shiver at room temperature.  No matter what the temperature may be, it feels colder.  Lately, it's been around 0 degrees and it seems to me like it's 15 below.  We'll see how I do with seriously cold weather.

I'm still working on a letter to the donor.  The letter has been written and discarded at least three times.  There is so much to say yet I'm having trouble saying anything.  I'll post the letter as soon as I write one that works!

Memories

Thank you for the suggestions regarding the anonymous letter I'll be sending to my donor.  Some very thoughtful ideas were suggested.  It's Winter break from school right now so I'll write something to my donor and post it soon.

The latest treatment and cancer news is nothing more than scheduling booster immunity shots.  The fistful of medications are the same, the minor aches and fatigue are the same and hopefully the lack of cancer cells invading my body is also the same.

As time passes, memories of my concentrated treatment is fading.  There are people and procedures I'll never forget but the day to day detail is becoming a blurred memory of mostly pain, misery and emotional turmoil.  The one daily observation that will stick with me forever is the sadness and life changing agony of cancer patients and family.  Some were in a loosing battle, others were in constant state of shock that cancer had found them.  The fight against cancer is so real, many have devoted their lives to that fight and others have given their lives while their friends and family are left to ask why.