Date:    Wed, 17 Oct 2007 18:55:38 -0400
From:    ShirleySFL <shirleysfl@PEOPLEPC.COM>
Subject: Re: Revlimid long term side affects/ a different look

I heartily agree with Boogiebarb that Sharon's post is a must-read for everybody.  I would print it and post in in my kitchen, but my printer is on the blink and fixing it or getting a new one is on my to-do list near the bottom.   I don't have a spouse or close loved one to share my chores, but I still want to live.   I have two sons and a granddaughter and ideas to share.   My husband left me for the next world three years ago.  It hasn't been easy but today I found a new physical therapist.   I know I'll never walk two and three miles like I used to and I still grieve for that life, but I know I will make peace with this new one.
                                     Thanks to all, expecially S. Johnson and Barbara                      From ShirleySFL in NYC
-----Original Message-----
>From: S Johnson <thesilo@OPTONLINE.NET>
>Sent: Oct 17, 2007 10:56 AM
>To: MYELOMA@LISTSERV.ACOR.ORG
>Subject: [MM] Revlimid long term side affects/ a different look
>
>I remember the first IMF Seminar I attended.  Dr. Morton Coleman
>reminded us several times that there is no free ride with any of the
>medications.  The doctors were talking about two new exciting drugs;
>Revlimid and Velcade.  As I sat in the audience I felt tremendous
>excitement that there was something that was going to slow this hideous
>disease down trying to kill me. I was looking for something that was
>going to help me extend my life while someone found something else that
>would extend my life.  In other words I just wanted to live; to spend my
>older years with my Sweetheart, watch my children grow older, and enjoy
>the marvelous grandchildren they had given  us.
>
>I was ready to put up with almost anything reasonable.  That is what
>these new drugs have given many of us in different forms.  It has given
>us hope, and brought remissions that would not be attained without them.
>Not always perfect; but it is remission. Keep remembering Dr. Coleman's
>words that "there is no free ride folks". Our society and television
>has been taught to think that we can take a pill and things will be
>resolved.  This disease is teaching us that this thinking is not true.
>This is a war people for our lives and health.
>
>Quality of Life for each of us is going to be different.  When I read
>some of the letters on the Listserv and what others deal with, I thank
>my Creator  for where I am at with gratefulness.  When I was first
>diagnosed and put on meds the trip to feeling better was not easy.  My
>determination however was.  I wanted to live and long.  That is still my
>goal.  I had known my body signals but now I became more intimately
>acquainted taking time to pick up little nuances that before I tended to
>overlook.  Now they were subtle little signals telling me what was
>coming in the future.  I learned to listen.  I also helped myself with a
>new regime of daily living and an outlook to match. Not always easy, but
>I keep trying.
>
>As I read these recent letters about Revlimid remission I hear people in
>grief.  Grieving for a life that will never be there again. Losing our
>old life is a death. Grief is a normal thing we each work through in our
>own way.  We have had many discussions about our new normals.  We do
>have new normals because this is our new life.  It takes time to learn
>to live or accept your new life; but remember it is LIFE. Be patient
>with yourself. The decision is whether you want to live it or not.  If
>so, you will find new ways to help the quality and go forward.  If not;
>it is your choice. We all get to chose.  Since I chose to try to keep my
>families life as near normal as possible the focus was not all on
>myself.  The perseverance that I needed to accomplish some of my goals
>helped me  feel mentally better. I have funky days, sometimes periods of
>time.  I recognize it and stay aware as part of dealing with my
>disease.  I  remind myself that I have choices with the depression.  I
>can ask my doctor for help, counselors if needed, meditation or anything
>I want to do. My caretaker is my barometer. What keeps me going is my
>daily talks with my Creator, family and friends and living life; giving
>Myeloma the least amount of my time I can. Life may not always be
>perfect, but is it mine and I cherish being here.
>
>Support of family and friends is important. A local support group has
>become another essential for me.  It is a place where I can gather
>support when needed , talk with my own, and most importantly for me to
>help others. Sometimes you just need to allow yourself to have a bad
>day; normal healthy people have them too.  One of the things we tend to
>forget is that if we didn't have this disease we would still have some
>bad days.  We might become ill with something else that would change our
>life.  Life is fluid and ever changing. Whatever choices we make as an
>individual is what we live with. The glass is half full or half empty. I
>am going to keep on drinking.  What is your choice going to be?
>
>Myeloma does suck as Barb says, but it is not going to determine my life
>while I have choices.
>
>Hope you are all enjoying this fabulous Fall day.
>
>Blessings,
>Sharon J
>
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