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Myeloma Caregiver Wife Blog: Riding Tandem

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In the Fall of 2004, Mr. C and Ms. J were riding a bicycle built for two around Greece, celebrating Ms. J's return to health and strength after her multiple myeloma diagnosis in 1999 and her stem cell transplant in 2000. 

Alan and I were in Greece at the same time, celebrating our 15th wedding anniversary. But we hadn't yet met Mr. C and Ms. J, and hadn't ever heard of multiple myeloma. For us, those two things wouldn't happen for another year, when in the Fall of 2005, back in Portland, Oregon, Alan was also diagnosed with multiple myeloma.

In 1999, Ms. J was diagnosed with MM after several of her vertebrae collapsed when she was moving a large vase in their home.  Mr. C launched himself into the battle to save his wife, who at the time was given a 6-month prognosis.  He did a lot of research, collecting 7 binders full of MM notes and data. Mr. C is a "Caregiver's Caregiver"  He bought stock in Celgene, the manufacturer of Thalidomide, the latest (at the time) breakthrough drug for multiple myeloma, in hopes of getting the current information on what Celgene was developing, as one of their shareholders. When C & J determined that their best option was a stem cell transplant, Mr. C offered to buy their local hospital the equipment to harvest the stem cells. In 2000, stem cell transplants were a relatively new and experimental process in Portland.  

For C & J, the transplant was victory. Ms. J is a "Poster Girl" for successful myeloma stem cell transplants: It's now been 12 years since she had hers, with no follow-up drugs or treatment since 2000.

Through a serendipitous connection, Mr. C and Ms. J became the first fellow travelers Alan and I met after Alan's diagnosis, and turned into our first guides. They invited us over to their home to share their story and answer our questions. During that evening of listening to their saga, and wealth of fascinating anecdotes, they both shared a warning with us: After the successful treatment, with so much to celebrate and be thankful for, they nearly divorced. The strain of the intensity of the medical crisis had left them in very different places. Mr. C was vehemently protective and Ms. J was withdrawn and overwhelmed by what she had been through. 

All of us become terribly caught up in the battle with multiple myeloma, we fiercely support and fight for our partners as well as for ourselves.  Caregivers become hyper vigilant, and it's assumed patients will always be grateful for the help and love they receive, but it isn't simple for any of us. Often we become so accustomed to our roles that we can't re-adjust when it's time to resume "normal" life.  C & J were to see how behavior patterns that were so necessary in the time of distress were pulling their marriage apart when the need for struggle was over. Fortunately they recognized the problem and were able to talk to each other. They found support groups and got help from a cancer social worker from the hospital.

Many of us don't get to that safe place where the myeloma is no longer the biggest fight of our lives. We move forward to keep from falling, seeking that balance, and a way to ride tandem for the duration of the trip. We both are pulling more weight than we ever thought we could as we negotiate the road ahead together. 

As Lance Armstrong said, "It's not about the bike."

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9 Comments

Dear Kim,
Thank you for sharing a story of hope and also of serendipity. The MM patients who were fortunate to have caregivers who were also willing to be the family researcher, face other challenges as roles change when their medical conditions change. Nothing simple but neither is any intimate relationship. Marriages, friendships, family members all assume new and often surprising roles. Some are disappointing and some so intense and special that our lives will never be the same. You fall into that last category, with your knowledge and generosity in all that you've been willing to share.

My husband, my heart, was diagnosed in 2010 and underwent SC transplant that same year. All that time I lived with my heart in my throat. He is now in near, if not complete, remission. He feels well and lives an active life. It has been hard not to keep listening for the other shoe to fall and hold on to that sense of dread. We all know that shoe will fall, it is the nature of this disease. I am focusing on taking each day at a time, finding the joy therein, and not worrying about tomorrow . It is harder somedays than others. I am so happy to have found this blog and community of fellow caretakers.

my husband was diagnosed in 2005 after 5 months of seeing specialists. (I use that term with a sad heart) I lost my father to mm so I knew a lot of the signs but we were constantly told not to worry, it could not be mm I was over reacting. My point is to tell as many people as you can because it even most doctors are not looking at mm. I know how afraid we were,life was over. If only we as experienced survivors could help to overcome some fears, life is different not over. There are so many ups and downs, don't panic, be your own advocate keep up on current treatment and don't be afraid to speak up. Be prepared as the caregiver to be as strong as you can be, ask for help and and connect to God as closely as you can, you will need all the help you can get. One more tip. Look as pretty as you can it helps

Thank you for your story! You are right to see this as a divine sign. How wonderful to to have your daughter- be brave and each day think of all the reasons you have to be thankful.
I was very sick for a few days in June 2009; went to a clinic and was hospitalized that night. I have been on novel therapies, in complete remission and just now have had return of myeloma protein. We will see what works next. I am healthy, skied three months this winter!
My daughter gave birth to our first granddaughter last October which is my great joy. God gives us grace when we ask.

This is a very strong story,but I can tell you about our "adventure" of life.
I,Frank,last year during spring time fall a little pain in the right side of my low lumbar column.
At that time thought be a sequel of a car crash 4 years ago when my right tibial bone broken.
I'm a Ph Doctor,also, but never coudnt think the real cause.In summertime the pain was so strong that i cannot walk and stand up.So thinking to a ernia went for a NMR of right coxo-femoral and lumbar place.The surprise was MM,with sacral,cranial,and column skeleton all invaded.
At that time my wife was at 12 weeks of pregnancy,for a week this was my secret,i wasn't able to comunicate this orrible news her,i was fear to loose everything in one moment.
Recovered in Tor Vergata Hospital in Rome where we live,the initial diagnosis was confirmed by blood analysis,PET and biopsy.
At that moment i was constricted to reveal the thru hard reality to my wife,that day was the darkest day of my life.After started a new trip for a new best life,a new second life at 51 years old.Now,May 2012,after chemiotherapy and radiotherapy I'm waiting staminal cell transplant in the same Hospital.Last 14 April is born my first daughter,before this miracle I work without limit day and sometime during night without complaining,but now i see this event like a divin sign so the only chance is go ahead at all costs.

Beautiful story-telling, Kim. Words of wisdom for all caregivers in the healing journey.

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