June 19, 2009

Me and Myeloma facts

I have been pretty slack about writing-sorry.  I have been sooooo busy  what with summer gardening, painting my house, and training for my next marathon-not!
   Actually I have been enjoying the rainy weather, trying to do what I can around my house and trying harder to ignore the things I can't do, and considering a walk through the grocery store as my "marathon" training.  
   So now for the long anticipated update.  How am I doing?
Well that is a loaded question and the answer is prone to change hourly.  I am regaining my strength ever so slowly.  I guess I was getting a little too cocky last week thinking how lucky I was that I had not had any infections after this second transplant.  Alas that was not to be the case.  Last week Joe had a conference in Park City for two days and I was so excited to go with him.  Instead of spending some quality time together, I spent most of the time in the bathroom kneeling at the toilet.  I couldn't blame it on chemo so I assume I had picked up a stomach infection.
    The last few days I have been developing a sinus infection.  It's been a doozy and has really knocked me down physically.  There is nothing like getting sick to remind me that I need to be more careful with this weakened immune system that I have.  That is the nature of this beast multiple myeloma.  It is a cancer of the plasma cells within the bone marrow.  The cancerous cells crowd out the healthy plasma cells that help fight disease and infections.  
   Since we are on the subject of multiple myeloma I wanted to give you a few facts about this cancer because I have never really explained much about it and very few people even know what it is.
     Like I mentioned multiple myeloma is a cancer of the plasma cells.  It represents only 1% of all cancers.  It is most commonly found in older men.  It is called multiple myeloma because it affects multiple parts of the body.  The acronym CRAB helps me remember what they are.  The C stands for hyperCalcemia.  Calcium from the bone leaches into the blood stream.  If enough of it gets into the blood it can damage the kidneys or Renal system. The A stands for Anemia a common problem with mm. The B stands for Bone.  As the myeloma cells begin to multiply they start to eat into the bone causing lesions, and repeated fractures.  I was very lucky to not have any broken bones which is usually how mm is diagnosed. However I do have numerous lesions or weak spots throughout my body.  I have an infusion once a month to harden the bones.
   Multiple Myeloma is treatable but is not curable yet.  There are several different approaches to treatment.  My Doctor takes the "hit 'em hard and hit 'em fast" approach.
Thus the high dose chemo and two stem cell transplants.  We were able to knock off most of the myeloma cells through this, but my doctor explains that there are "sleeper cells" lurking which we have to get rid of through maintenance chemo shots and anti-cancer drugs and a steriod throughout the next year. 
   So the question is How am I doing.  Well I made it to the top of this first mountain range but I am not done mountain climbing yet.  Every step through this journey has been hard.  It has affected every facet of my being. It has made me grieve for the life and body that I had, but truly appreciate the many good things in my life I still have. I look forward to renewed health and a happy future.

June 02, 2009

My Life Preservers

 After reading my previous blog,  I realized that I had failed to mention one of the greatest blessings in all of this.  My parents!  I don’t know what we would have done without them.  Luckily they live just 20 miles from Huntsman; a true blessing while I am required to be close to the Hospital during testing, treatments and recovery.  I can not even imagine how we would have managed without them. Having them live conveniently near the hospital has been wonderful, however they have done so much more than that.

    My parents have given me life twice.  Once when I was born; the only girl in a family of four boys. (ironically just like the family I am raising) And now they give me life again through the many sacrifices they have made to get me through these last several months. 

     They raised me in a home filled with love.  They taught us life skills I am grateful for now.  Both teachers, they worked hard to care for a big family and made sure we knew how to work hard.  We spent many happy summers in my favorite place-Star Valley, Wyoming, working and playing in the hay fields and woods.

     They have been with me every step of the way.  From the moment we found out the plan, they have adjusted their lives to help my family and I manage all of this.   My dad bought a new car that would be easier and safer to drive into Salt Lake everyday for appointments and treatments.  He  made sure it had good snow tires and was heated before I got in during December when I had to be at the hospital by 7am every morning for over a week.  My dad has taken turns taking me to appointments-He takes the shorter ones :) and gets things done around the house when my mom is with me.  

     My parents just bought a trailer home in St. George last year and were anxious to get down their and enjoy it. They put all their plans on hold without a second thought.  My dad is one of my life preservers!

    My mom has spent her life caring for her children. She cooked, canned, sewed and worked full time.  Although she was a 4th grade teacher for many years,  I think her second career has been that of a nurse. She has spent countless hours in hospitals over the years attending to the needs of our family with broken bones, health problems, and serious life-threatening accidents. Well her experience comes in handy once again as she takes care of me.

     She has spent many, many hours in the waiting room and infusion room by my side.  Her life has been completely consumed with me and my needs.  She probably knows more about my disease than I do as she researches and stays on top of what I should be doing each step of the way.  She spent everyday of my ten day hospital stay with me even though I wasn’t good company and manages to whip up healthy meals for me even  though I could only take a few bites.  My mother has given her life to give me a second life.  She is one of my life preservers!

     How can I ever express the love and gratitude I feel for my parents.  I ask the Lord to bless them everyday for the sacrifices they make on my behalf, and hope that I can be there for them whenever they may need my help.

      I Love you both and am so grateful to be your daughter.  Thank you for all you have done for me now and throughout my life. You have supported me every step of the way.  You are my life preservers in every sense of the word.  Love, your daughter, Kristine

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