Wednesday, January 25, 2012

Flaming Hoops

When I was WA State President of Alpha Delta Kappa, International Honorary Organization for Women Educators, a friend and past state president gave me a bit of very good advice that I have passed on many times.  She told me that it was important to focus on one step at a time instead of always looking at the whole picture.  She told me that you can only do one thing at a time and she was so right.  It can be overwhelming when you look at all that needs to be done, but just looking at what needs to be done right now and doing it is not so overwhelming.  

A stem cell transplant is a daunting procedure.  I will follow my friend’s advice as I navigate through it.  A few days ago, I began thinking of the process as jumping through hoops and I can visualize a long line hoops stretching out before me.  I know that some of the hoops are going to be flaming, but not all of them will be like that.  I also know that the flaming hoops will not last through the whole procedure.  Once I have made it through a flaming hoop and the misery that will go with it, I will move on and I can hope that the next hoop might not be on fire.

I feel like my physical body is at war 
with my soul.

I have thought about writing about my multiple myeloma diagnosis for quite some time, but didn’t know where to start.  In fact, many times when I thought about it, I wondered, “Do I really want to start?”  Then I would be compelled to face the situation squarely and accept it.  I think I have accepted it now and I realize that it is my new reality and my life will never be the same.  My life as I knew it is gone and a new one is taking shape……I don’t like it but it is the truth and it is somewhat of a relief to be at this point.

This morning in the shower, I thought about how surreal this all is.  It is hard to think of your own body working against you. That is when this thought crossed my mind:  I feel like my physical body is at war with my soul.  I think this sums up how I feel about this terrible disease.

I feel fortunate that I was able to get through about four months of chemo with few side effects and feeling pretty well most of the time.  I do have my days when I don’t feel well and I can get really tired. My oncologist calls them my “splat” days – a perfect term to describe how I feel on those days.

On October 19, I will begin the stem cell transplant process at Seattle Cancer Care Alliance (Fred Hutchinson Cancer Research Center/University of Washington Medical Center/Children’s Hospital).  It is a daunting procedure and one that will require us to live in Seattle near the clinic from about Nov. 1 to the end of January.  This is usually my favorite time of year with Halloween, Thanksgiving and Christmas.  I love decorating for all the holidays and I like our house best at this time.  It is hard to think of spending the holidays away from home, especially since I have usually been the one to cook Thanksgiving dinner and do Christmas gatherings.  I guess in the scheme of life those things are not very important right now.  I have high risk myeloma and I don’t have a choice but to do the transplant.  I would have no future without it.  Even with it, I won’t be cured but it should gain me some time.  

The doctors have suggested the possibility of doing a second transplant from a donor after the autologous transplant using my own stem cells.  The donor transplant is riskier, but shows some promise for better results and maybe even a cure.  I really can’t believe I am talking about myself ………….I pray for courage and strength to get through this.

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