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Myeloma Caregiver Wife Blog: Stories

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Sooner or later, everyone is a wounded storyteller.
- Arthur Frank

On a Friday night last fall, several of us from the Portland Myeloma Support Group went to the Newmark Theatre here in Portland to hear Siddhartha Mukherjee give a lecture on his book "Emperor of All Maladies-- A Biography of Cancer," which recently won him a Pulitzer Prize. He talked about his book being a biography in which the main character, Cancer, is not featured, but reflected in people's stories illustrating their experience of it. Some of the coincidences and connections he talked about were haunting.

After the lecture, my husband Alan was approached by a coworker from a job he had over ten years ago. I split off and talked to his ex-coworker's wife, while they caught up. I really liked her. Our conversation was strange because it was apparent that we were both caregivers on a cancer journey, but couldn't talk about it until we knew that our husbands were sharing the same story. Our hesitation seemed to be tied directly to the lecture we'd just heard-- it's not "if" but "when" your life is going to be touched by cancer. And our very real connection didn't address directly the cancers that colored everything in both of our lives.

That Friday had been great day because, for the first time in weeks, Alan had been able to eat three meals without suffering from G.I. issues. It was fun to be out with our gang. It felt like a 'normal' date night- a better-than-normal date night!  However, by the middle of the night, Alan was violently shaking with a fever. I covered him in blankets, called the clinic, gave him a Biaxin, and began reading to him out of a book I checked out of the library, called "The Mythic Journey." The chapter I started reading to help calm the shaking was on 'Separation, Loss and Suffering', and was represented by the Biblical story of Job's Trials.

It's a very different story when you are reading it to your husband who has been living with a disheartening cancer diagnosis for six years, who is shaking with fever, whose feet are bleeding and who is struggling with G.I. problems at three in the morning. But its message about accepting the hand you have been dealt, and not looking for something to be 'fair' was the right story for both of us. I am still amazed that it was the one I picked up. Thankfully, by early morning, the fever was on the way down, and Alan was sleeping soundly.

Much of what has resulted from this myeloma diagnosis has been both bonding and isolating, though not usually packed together so closely. As one of my friends, who is also on a cancer journey, said, "One thing about troubled times, and 3:00 a.m.-- it just doesn't get any more real than this. Real, vivid, fully awake and aware." And that is atonement. 

Be well,
Kim

P.S. I have a friend who is a myeloma caregiver wife, whose husband is on 'day twenty' of an allo stem cell transplant. It will be his third transplant, and the process has been challenging and unusual enough that I ought to recruit her to write a 'guest caregiver blog.' They still have 70 more days of living away from home. I want to send them a list of movies with a theme about "beating the odds," and I would like help from you, fellow travelers -- Do you have a movie title that you think would uplift and entertain?  
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44 Comments

I always look forward to reading your blog Kim and find great solace and comfort in what you write. Thank you for sharing this with us all

Dear Kim,

Thank you very much for sharing your personal care-giver experience.

You are an inspiration to us.

Frances

There are good days and there are bad days. During the good days, I enjoy date nights (afternoons) with my husband. Some days, it actually feels like we are living a normal life again. Then the bad day comes....
The good days are always nice while it lasts.

Kim,
Thanks again for another heart told story .
Jim

Kim, your words are a gift. Thank you! Lisa

Kim,
You are a great inspiration, and have put the care takers position in such perspective. It is a day by day journey.
Thank you for all your sharing.
Kathleen Ryan

Kim,

Thanks for sharing your personal caregiver story. Acceptance of the journey and not looking for something to be fair is a great reminder for me right now.

Debra

I have been on this "journey" for over six years my husband was diagnosed four years ago, but for two years before that about every six weeks he would get ill with a stomach virus where he would throw up for three days. I would worry constantly about it,but he thought it was due to him working at a hospital.He finally was convinced to go to a doctor by excrutiating back pain, he could not even walk by then.A lot of the blogs don't talk of having to accept things,but rather this is their new normal.I was 54 when he was diagnosed and our lives have changed immeasurably. I thought something is really wrong with me, why am I having a hard time with acceptance.Your words have helped me.Thank you.

Kim - I enjoy reading your stories. My husband has had MM for almost 7 yrs. and last year, I was diagnosed with 2 cancers only 4 months apart, so we have shared our times being both patient and caregiver...it is a true test of what marriage means, and we wouldn't have traded it...it's all part of our journey together. A movie that always makes us feel good, with many characters who have to go to "plan B", and has awesome scenery is "Under the Tuscan Sun". We have watched that movie many times both on good days and bad days, & it always brings smiles to our faces. Thanks much.

Thanks Kim,
The caregiver's perspective is so unique and you do a great job of sharing it. I know these are kids flicks but I have spent a lot of time watching them the past few years with my son, Finding Nemo, Toy Story 1, 2 and 3. March of the Penguins too. Harry Potter ....
Jennifer

Dear Kim,
Thank you for sharing your caregiver story. I am not a caregiver but an MM patient for the last 18 years and I want just to ejncourage your friend "who is a myeloma caregiver wife, whose husband is on 'day twenty' of an allo stem cell transplant". Like him I underwent 2 ASC's and this July it will be 9 years since my mini-allo SC.

I hope you all take care and survive for many years.

Mati Raviv in Tel-Aviv

I have multipleyeloma for 4 years. I am in full remission. My husband and 8 children are so supportive. I enjoyed your share, it made me pause and remember that on this journey I am not alone

Noreen Keatong

Kim: Although not a movie, see if this commencement speech from Youtube fits the bill. http://www.youtube.com/watch?v=_lfxYhtf8o4.

Dear Kim!

I loved the opening quote, it just totally got my attention and I read your blog with great interest. I also always find a helpful kernel - something I relate to on a visceral level! Keep writing and sharing! Aloha, Simone

Very inspiring, Kim! Add Soul Surfer to your movie list. Just watched it tonight. Makes me want to go back to Hawaii and learn how to surf.

Dear Kim,

I burted out in tears reading your story ... this is exactly the experience that my friends need to hear about now!

Thank you,
Lais

If anyone can answer a few questions, that would be great. My mother is 89 and has MM since 2010. Her doctor is horrible and won't answer our questions. Her blood counts are free kappa serum, 2636.0, free kappa/lambda ratio 1000.00.Are these counts high enough for concern? She feels fine, lives by herself and drives. The Dr. is wanting her to take Revilmid but we're afraid of the side effects. She has had blood clots in the lung and leg.Any help would be appreciated.

Please provide me your email or contact the hotline directly at hotline@myeloma.org.

You can email me at cphillis@myeloma.org.

Thanks!
-Christina Phillis
IMF Web Editor

Brenda,
My husband has been talking Revlimid for almost 6 months now. His kappa/Lamdas has improved do much on this drug. I would reccomend it as a good treatment. Talk to your doc about it more...really consider taking it.
Yours,
Kristi Berryessa

MY IDENTICAL TWIN SISTER HAD A STEM-CELL TRANSPLANT IN JAN,2011 WITH ME BEING HER DONOR...THEY TOLD US IT SHOULD BE A COMPLETE SUCCESS....IT WAS NOT AND AT THE 100 DAY BIOPSY RESULTS WERE STILL 10% CANCER CELLS....WITH IN 5-6 MONTHS BACK AT 40% AND STILL FIGHTING ,TRYING TO GET CHEMO AND HAVING TO GO OFF UNTIL BLOOD COUNTS RECOVER ENOUGH FOR TREATMENT. THIS HAS BEEN AND IS STILL A BATTLE FOR US.HAS ANYONE EVER HEARD OF AN IDENTICAL TWIN TRANSPLANT NOT WORKING? DR. SAYS HE HAS NEVER KNOWN ONE TO FAIL BUT DOESN'T KNOW WHY...ENOUGH STEM-CELLS WERE HARVESTED TO DO 2 TRANSPLANTS BUT AFTER A YEAR AND A HALF OUT FROM 1ST TRANSPLANT NOTHING HAS BEEN MENTIONED ABOUT A SECOND ONE .DOES THIS SOUND RIGHT TO ANYONE OUT THERE? I FEEL LIKE SHE HAS NOT GOTTEN THE BEST OF CARE, THINGS WE WERE TOLD WOULD HAVE TO BE DONE BEFORE AND AFTER TRANSPLANT WERE NOT DONE AS WE WERE INFORMED...I AM REALLY QUESTONING THE CARE SHE HAS BEEN GIVEN. WHAT DO YOU THINK OUT THERE?

Hello,

Please call the IMF Hotline 800-452-2873 M-Th: 9-4 PST Fri: 9-2 PST.

Thanks!
-Christina Phillis
IMF Web Editor

Kim, I am replying to the woman whose husband has M M and she herself has terrible back pain.
Dear sister in pain,
My husband is sick also with MM & has been quite ill since December 2011. Call me and his caretaker, despite my chronic back pain of many years. Try ice on your back and alternate with hot showers or heating pad. Hang in there... They need us. We finally hired someone to clean our house regularly. That really helped us to be able to concentrate on the important things, such as, each other. Don't forget each other, trying to do small things together, despite your pain and his pain allows. This is important.
Your sister,
Kristi Berryessa

Just stumbled upon this blog. I, too, am a caregiver wife. My husband has been dealing with MM for 4 years. Had a double stem cell transplant (autologous followed by allogenic) in 2009. Relapsed last October and is back on chemo. In good times and bad, we both resort to humor on a lot of occasions. If you just want to have a good belly laugh, we recommend watching Muppet Show snippets on You Tube. Have you seen them do their rendition of Queen's "Bohemian Rhapsody?" Priceless. Best to you and all the other caregivers out there on this journey.

So nice to have found this blog. I enjoy reading the comments and don't feel so alone in this. My taste may not be others, but a really silly, old movie I used to really laugh at was a comedy called,"Baby's Day Out".I don't laugh out loud at many movies, but I did this one.

Hi Kim,


I am the scientific media editor of CureTalk, a medical research and health care blog. CureTalk is the blog site of TrialX, an online platform that enables patients to find trials near them.
CureTalk is excited to launch a whole new series of monthly Cure Panels in which we plan to invite experts/patients/bloggers to discuss latest treatments being developed for a specific condition. We are kickstarting the venture with a Myeloma Cure Panel.
For more details check here, http://trialx.com/curetalk/wp-content/s/index.html.
Dr. Ravi Vij, has agreed to be the expert on the panel and bloggers/patients/caregivers/students can dial in and listen. It would be great to have you on board. If interested, please do let me know, priya@trialx.com.
thanks Priya

Hi to all the caregivers out there. My husband and I have been fighting multiple myeloma for 10.5 years. He has had 2 autologous stem cell transplants one in 2002, with about 6 months remission and the second one in 2009 with no remission just reset blood levels. I have not heard of a multiple myeloma patient receiving an allogenic transplant that could collect their own stem cells. He did just go through a VDT-Pace treatment that did not work at the end of July and is now trying the new drug carphizomid. We will find out if it is helping him on October 2. What has helped us through are journey with multiple myeloma is knowing that we are not in control of what happens in life. That the Lord is the director of our walk here on earth.

Synchronicity is so powerful. Wonderfully written, Kim! And so from the heart.

Love,

Liz

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