1959 / Class of 1998 / Type: IgG, Kappa light-chain / Mini-allo, remission / Updated: 6/12
In October, 1998 I was diagnosed with Multiple Myeloma. I was 39 yrs. old. Like most young patients, I was told I probably did not have Myeloma because I was too young. My disease was confirmed with a bone marrow biopsy and a 24 hr. urine collection. At diagnosis I had 16% plasma cells, with IgG Kappa and Kappa light chains, and was Durie-Salmon stage 2A. I also had a few small lesions. A month after diagnosis, I began VAD chemotherapy. I received 4 treatments with excellent tumor reduction. 3 mos. later I received a mini-bone-marrow transplant. two of my five siblings were perfect matches. My 32-year-old sister was chosen as my donor. I was hospitalized for 6 weeks. My family moved in to a house rented out by the hospital. They were with me 24/7. When I was doing well I was allowed to go to the house with them. My transplant was not easy. I feel like I experienced every complication possible. An E.Coli infection nearly took my life, but 2 years later I am not only alive but well!
I thought the day I was diagnosed was the last day of my life. I was wrong. Yes, many things have changed and I am no longer the same person. But I believe that what does not destroy me makes me stronger. I live one day at a time. I do not live for the future, I live for today. I have 2 teenagers who still need to. have me around and I thank God for blessing me with 2 years so far. I pray I will be around to see them grow to adulthood.
Unfortunately, I have chronic graft-versus-host disease. I have had it on and off since my transplant. It manifests itself in mouth lesions. We have tried zanapex, steroid injections into the sites and pain killers as well as high dose steroids. I am hopeful that soon it will burn itself out. There is so much more I could say but it is probably best to leave it at this. If anyone has any questions or would just like to correspond with me it would be my pleasure. I don not know anyone who has Myeloma or has had a transplant. I would especially like to talk with women near my age.
In closing I would like to encourage everyone reading this to fight the good fight, and keep the faith.
September, 2003: It has now been 4-1/2 years since my transplant. I am still in remission. At my last Doctor's visit labs confirmed that my donor engraftment is 100%! What a blessing to hear those words! My doctor told me he actually believes I may have achieved a permanent remission. (I'm sure this is "off the record" since MM is still considered incurable)
My graft vs host disease finally burned itself off about 2 years ago. For the last year and a half I have worked full time. I realized a lifetime dream by taking a trip to Italy last spring with my daughter and her class mates. I was even able to keep up with high-schoolers for 10 days!
4-1/2 yrs later I am finally able to look into the future a bit. I actually think I may be around to see my kids marry, maybe even hold a grandchild. After all I've been through those thoughts bring such joy to my life.
I encourage all of you to keep fighting, Try to enjoy each day you are blessed with. God has been my source of strength. He wants to carry us all through these tough times. Reach out to Him and he will never fail you!
I'd love to correspond with anyone who would like to know more about my experience or just needs a little encouragement. If I can use this "challenge" to help someone else through a tough time I'd be thrilled!
February, 2006: I am now approaching my 7 year anniversary (since my transplant)! Surprisingly, my experience with Myeloma seems like a distant memory. Partly, I suppose, because our brains have an amazing way of helping us heal by allowing us to forget. (I'm sure chemo-brain has also contributed to the "forgetting")
I am now very involved in the American Cancer Society's Relay for Life. I look forward to more and more opportunities to use what I have been through to help others.
I hope that my story will help restore hope to those who are discouraged. There truly is light at the end of the tunnel. With God's help we can bravely travel there.
March, 2008: I just celebrated my 49th birthday, which seemed like a fitting time to update my story, as it has been almost 10 years since my diagnosis. As of my January 2008 Doctors visit, my remission is still going strong. Being 9 years post transplant, I am now at the stage of looking back and evaluating long term side affects from my transplant experience. I thought this might be useful information for those of you not quite as far along in the journey as I am.
My over all health is very good. I exercise regularly (run on the treadmill 4 times a week and have a regular exercise/weight training routine) I started a low fat diet 8 months ago, lost 20 pounds, and am as fit as I have been in many years. My treatments have left me with the following challenges:
I currently work at a pregnancy care center as a client assistant and thoroughly enjoy my job. I beleive my cancer experience has contributed to me developing the empathy I so need in working with women and girls in a crisis. Though their circumstances our different than mine were, I can so related to the hopelessness and fear a crisis can bring to ones life.
So, between my work and sharing my story with those I meet on this site, my life is very full. My daughter graduates from college this year (my son graduated last year). I will be blessed to celebrate my 29th wedding anniversary in October with an amazing husband who, through it all, was the encourager and supporter I so needed to survive.
In closing, I would encourage anyone dealing with an MM diagnosis to try to stay positive, listen to your body, surround yourself with people who care and remember, God did not do this to you, but he does want to carry you through it- He is faithful!
June 2010: It has now been 11 1/2 years since my M.M. diagnosis. In 2009 I was blessed to celebrate my 50th birthday, my 30th wedding anniversary and my 10 year post-transplant anniversary. I commemorated my cancer milestone by running in my first ever 5K (I took up running after my transplant) and getting a tattoo celebrating life after M.M.! My sister Tracey, who was my bone marrow donor, and my son Nic chose to join me. (see photo) Our tattoos are the MM ribbon and the word "vida" which means "life" in Spanish.-what a celebration that was! I continue to live a full life and very much enjoy opportunities to talk to other M.M. survivors via this web page and my volunteer work with The Leukemia and Lymphoma Society's First Connections program.
June 2012: As I approach my 13 year post transplant anniversary I would like to thank everyone who has contacted me regarding their journey with Myeloma. I hope that somehow or correspondence has helped you in some small way. I am always inspired by the strength, hope and faith of those I communicate with in our special "club". I am blessed to have a continuing remission. This past year has been a dream come true for me as we were able to move back to Illinois from Michigan. I am now close to my family. My son was married in December and my daughter is in Colorado pursuing a masters degree in counseling. I am so proud of them! Being a part of these treasured life experiences is something I will never take for granted. I am truly blessed.
In an attempt to connect with more cancer survivors I am just starting a blog. A would love for you to join, and communicate with me there too: http://petesblessedbeyondmeasure.blogspot.com
wishing you blessings, hope, healing and peace...
"Life isn't about waiting for the storm to pass...it's about learning to dance in the rain"... Dance on...and God bless!
Contact me anytime! firstname.lastname@example.org
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