Thursday, July 22, 2010

A Perfect Record Falls

You MM trekkers know that when you pop into the infusion center or doctor's office, they often ask you a set of customary  questions such as:  Have you experienced Fever? Nausea? Pain? Fallen?  I'd write Diarrhea, but I can't spell it. Bleeding? Dizziness?  Fatigue? Insomnia? and so on.

I have always been able to answer the questions without thinking twice. Sometimes I've had fevers, trouble sleeping, nausea, pain - most likely you all have answered 'yes' to these categories at one time or the other.

But the one question I've never answered 'yes' to was: Have you fallen? Until now!

A couple of days ago I stepped out to get the mail. The box is at the end of our two-house street, and as I set foot onto the somewhat damp lawn, gravity in conspiracy with an unknown assailant, struck. My legs shot out in front of me, time turned into a Matrix-like super slow-motion, my arms flailed out to my sides desperate not to be pinned under my girth, my Nike ball cap jumped ship, my glasses went sideways, and I landed on my back with a thud that should have measured high on the Richter Scale.

I was motionless for a few seconds as the blood rushed and pounded in my ears. I was just hoping that it wasn't rushing out of my ears!

I noticed that I could breath. And that I could see the partly-cloudy Ozark's sky and that nothing seemed to hurt too badly. I also noticed that I could hear the blue jay sitting in my cedar tree. Blue jays are territorial and they 'dive bomb' creatures that get in their space. I had visions of looking like a huge worm to this opportunistic blue jay. I've seen the Hitchcock movie. Better move before the pecking started.

I cautiously lifted up my head, I'll admit, to see if the neighbors were laughing at me or  if they had a video camera aimed to create the next YouTube viral video. I was alone. Except for the blue jay and the chipmunk that peeked out from behind the low rock wall. I swear that before he scurried away he said 'So sorry for your nasty spill, old chap, but you can't catch me now!'

Where does a hillbilly chipmunk get off calling me 'Old Chap'? 51 is not old! Although 1 human year is about 25 chipmunk years. I may not be able to catch him, but I will out live him.

It was then that I  remembered that I had Myeloma, a history of  a bunch of fractured ribs, shoulders, vertebrae, sternum, and more. In a split second, did I just undo surgeries, Zometa infusions, and anti-couch- potato rehabilitation?

My toes and fingers wiggled. I could move my neck slowly  from side to side. My arms bent reasonably from the elbows and then from the shoulders. Okay so far. I  bent my knees and moved my feet closer to my hips. I stretched my back with great care and didn't hear anything crack or pop. Hugging my knees, I sat up and looked over at my neighbor's house again. No $10,000 Home Video Prize for them! I gingerly rose to my feet, no worse for the wear. A quick prayer expressed my gratitude and I promptly forgot about the mail.

So next Wednesday at my weekly maintenance chemo session, I will be asked 'Have you fallen?'  And my answer will be....... 'You got a minute?' Or my pride might get the better of me and I'll say 'Nope.'

Be careful out there in Myelomaville!


Sunday, July 18, 2010

How Am I Doing?!!!!

The folks that I run into in this part of the country, even the strangers, are inherently warm and friendly souls. They almost never fail to offer a

        'Hi, how are ya'?'

Firmly believing that, in many ways, we are a product of our choices, I have to make a choice on how to respond to the simple 'how are ya's' that come my way.   

           Maybe I could say what I'm THINKING:

'How am I? Now, I'm not complaining, BUT I've spent the last week being sick to my stomach. I have insomnia and I can't find a single sheep to count. Flu-like symptoms, neuropathy, poor appetite, foot and hand cramps. Without being too graphic, I have a runny nose, I feel like I've been run over and I'm running on empty. I've been regurgitating things I don't specifically remember gurgitating!

My insurance provider has changed for the second time since my diagnosis in November of 2008. Hope they cover my treatment. My Revlimid delivery was two days late because I have to use a new pharmacy approved by the new insurance company. It says right on the pill bottle '21 days on, 7 days off' - not 9 days off! My medication co-pays have tripled under the new plan. If they don't cover Revlimid it will be $7500 a month.

The new, personal-service insurance rep called me 'Scene Murphy' - my name is Sean Murray. Sean, like Sean Connery, the guy whom would kick your rear end if you called him 'Scene!' And it's Murray, not Murphy. Not that there's anything wrong with the name Murphy. My Irish grandmother was a Murphy - but my grandfather was a Murray. Good personal service starts with calling me by the right name.  

Because of the insurance change, I have to educate another dentist about MM and assure him that it is okay for him to clean my teeth even though I'm receiving quarterly Zometa infusions. Yes, I have heard of Osteonecrosis of the Jaw, but my jaw bone will not die if you, or your nice, but overly perfumed hygienist, don't accidentally rip out one of my teeth while you're trying to clean it.

And yes, even though I've had several rounds of high-dose chemotherapy, two stem cell transplants, a dozen bone marrow biopsies, three kyphoplasties to repair collapsed vertebrae, a filter placed in my inferior vena cava to stop runaway blood clots from killing me, lots of broken bones, hundreds of blood tests, and I am undergoing THREE YEARS of maintenance chemo, I'm not a tough guy. If I just happen to have a cavity, I pray that Dr. Newdentist gives me enough Novocaine to  deaden the pain, as I gave up biting on a bullet or slugging back whiskey from the bottle years ago. One time a dentist slipped in his chair and gave me a shot on my eyelid.    

Oh, and I had to replace my roof, my gutters are 5 weeks late, it's hot, Hot, HOT outside, my new puppy has mange, my glasses broke, the air conditioning on my family van isn't cooling well, I can't taste my food, and the weeds are preparing to quick-march an assault on the grass in the yard. And I have this thing called peripheral neuropathy that makes my hands and feet numb.

AND, I still have to drag my anemically exhausted body to my weekly maintenance chemotherapy sessions - only 122 weeks more to go!  

I missed church because I felt it was more important for the congregation to hear the minister's message than to try and decipher the Morse Code of my coughing fits. Three long sneezes, two short coughs, three long sneezes - SOS, Save our Scene, I mean, Sean!'

That's what I was THINKING. But what I chose to SAY was:

'How'm I doing? I'm GREAT! Life is an adventure and I'm glad to be here.'

And you know what? Life IS an adventure. Life with Myeloma is a chaotic adventure. God didn't promise me an easy path, but He sure made it an interesting journey. Yeah, I'm doing GREAT!

 Keep fighting out there in Myelomaville!

Wednesday, July 7, 2010

The Myeloma Beacon

For great news and information about the Myeloma world, visit . And when you're through reading the important newsworthy and medical stuff, take a look at my monthly column. It may not make you feel any better,  but you can laugh at my picture while you're there.

Stay well out there in Myelomaville! 

Tuesday, July 6, 2010

A Book You May Want to Pick Up

Have you ever thought of writing or journaling about your Myeloma experience? Take a look at the following VOCUS/PRWeb news release about Diana Raab, writer and Myeloma & breast cancer patient.

Journaling Transforms Cancer Experience Into Memoir of Discovery

Diana Raab, nurse and award-winning writer, embraced her cancer experience by journaling, which led to a memoir/self-help book that empowers others in their cancer journeys. Like a daily vitamin, journaling facilitates healing, detoxifies negative thinking and optimizes emotional health.

Santa Barbara, CA (PRWEB) July 5, 2010 -- In lieu of allowing cancer to destroy her life, Diana Raab, a nurse and award-winning writer, has embraced her experience and turned a negative into a positive by creating a memoir and self-help book to uplift others with a cancer diagnosis in “Healing With Words: A Writer’s Cancer Journey” (ISBN 9781615990108, Loving Healing Press, 2010).

At age forty-seven, Raab received a diagnosis of early breast cancer and five years later another incurable cancer—multiple myeloma. In “Healing With Words: A Writer’s Cancer Journey,” she shares her story with candor while refusing to allow cancer to conquer her spirit. Her forthright and empowering message has been reviewed as powerful, inspirational, insightful, compassionate, wry, concise and complete.

Raab, a journaling instructor at UCLA Extension Writers' Program, ardently walks her talk and uses her journal to find solace during difficult times and to help validate or navigate her feelings. “I view the journal as a daily vitamin—in that it heals, detoxifies, and is essential for optimal heath,” says Raab. “Healing With Words” is a mélange of reflections, poetry, memoir, journal entries, and writing exercises for readers to chronicle their own experiences.

Readers of “Healing With Words” will come to understand:

* The importance of early cancer detection
* How to take control of their own health
* The power of writing to release bottled-up emotions
* How the process of journaling can facilitate healing
* How a cancer diagnosis can renew and uniquely change a person

And readers can take joy in knowing that author proceeds for each copy purchased will be donated to the Mayo Clinic.

“Healing With Words” is being hailed as an insightful, unforgettable exploration of one woman’s cancer journey. Barbara Delinsky, author of “UPLIFT: Secrets from the Sisterhood of Breast Cancer Survivors” states that “Healing With Words” is “beautifully told and inspiring to those for whom journaling will ease a cancer diagnosis.” Dr. Melvin Silverstein, Director of the Breast Cancer Program, Hoag Memorial Hospital, says, “I applaud the author for having the courage to share her personal story in the form of narrative, journal entries and poems.” And Sena Jeter Naslund, author of “Ahab’s Wife” declares, “Diana articulates incisively the thoughts and feelings that convey hoped-for meaning and encouragement….She will add value to the life of every person who reads this book. ‘Healing With Words’ resonates at a spiritual level for me.”

About the Author
Diana M. Raab, MFA, RN, has been a medical, self-help writer and poet for the past thirty-five years. In 2003, she earned her MFA in Writing from Spalding University. Diana is the author of eight books, including her first memoir, “Regina’s Closet: Finding My Grandmother’s Secret Journal” the recipient of the 2009 Mom’s Choice Award for Adult Non-Fiction and the 2009 National Indie Award for Excellence in Memoir. She is the editor of “Writers and Their Notebooks,” a collection of essays by esteemed writers who use journals to inform their work. Diana teaches in the UCLA Extension Writers’ Program. She frequently moderates panels at conferences across the country, with a focus on writing for healing.

“Healing With Words: A Writer’s Cancer Journey” (ISBN 9781615990108, Loving Healing Press, 2010) may be purchased through local and online bookstores. For more information, visit Publicity contact: Review copies available upon request.


Thanks to the folks at PRWeb for this release.