Everyone can get in on the action...

My niece, Clare, is a very central member of Team BTHO MM.  Deana was diagnosed a few months before Clare turned 8.  When told of her mother's illness, Clare's immediate reaction was disappointment that a planned family trip to Germany would have to be postponed.  As my sister said at the time, of the possible outcomes from such a conversation, that was a good one.

Several days later, when the first box of "No one fights alone" merchandise arrived, Clare traveled around the block, distributing rubber bracelets and encouraging all the neighbors to join the fight.

Now, she's taken her efforts a step further, crafting bracelets with the Rainbow Loom, apparently a very hot product in the children's craft market.  Clare sold these bracelets and raised $212 in support of Team BTHO MM's participation in the 2013 NYC Marathon.  Through the generosity of one of my dear friends, that money has been matched and will now bring $424 in support of research to advance a cure.  For more details on the work of the Multiple Myeloma Research Foundation, visit www.themmrf.org

To say I have been tremendously proud of Clare is an understatement. She has handled our life with MM with maturity and grace beyond her now 10 years.  For her, my sister, and all rest of us in the MM fight, my efforts shall continue.

Living with MM -- Progress Report

This morning I am happily back in Athens, GA after a week on the road for business.  That's how my life goes -- and it is a life that I love.

While I was traveling, I received an email from Deana, titled "Not to worry y'all...."  One would think that after being my sibling for 41 years, she would know that a subject line like that is only going to cause me to worry.

As I read further, Deana revealed that she was in the emergency room, running a fever.  Panic immediately set in, and I started running through scenarios in my mind as to how quickly I could get from Lexington, KY up to Pittsburgh, PA if this was something serious.  (The funny thing is, I generally consider myself to be an optimist, but with MM, I take nothing for granted.)

Duty to my job called, and thus, I continued with my appointments, finally having the opportunity to check my phone several hours later.  Thankfully, a message from Deana was waiting.  She had been discharged from the ER, diagnosed with an upper respiratory infection, and augmentin was prescribed.  I breathed a sigh of relief and sent up (yet another) prayer of thanksgiving.

Back into active team captain mode sprung I.  The next day, I emailed Deana no fewer than six times in the course of a few hours:  Was she resting?  Had she contacted the oncologist's office?  (She had -- that's what led her to the ER.) How was she feeling?  Was she resting?  (Yes, "resting" comes up many times.)

We are approaching 2 1/2 years into this journey and our new life with MM.  I wonder if there will be a day when Deana running a fever won't be cause for alarm -- I guess that day will come when we have a cure and this chapter in our lives will be one we look back on as one of our greatest challenges, a challenge we overcame, a battle where we emerged victorious.  I am anxious for that day to arrive.

A friend who survived breast cancer told me it took her 7-8 years before her cancer wasn't top of mind and a main topic of conversation every day.

Guess we have a way to go...

A brief post today to share some news from MMRF.  Founder Kathy Guisti is an amazing woman and I will continue to support her in any way I can.  http://www.themmrf.org/about-the-mmrf/powerful-news/mmrf-founders-blog.html

CURE Magazine article re: new treatments for MM

Just received the latest issue of CURE, a magazine devoted to cancer updates, research and education.  There's a great article about MM.  Enjoy!
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2117

It's National Cancer Survivors Day!

Unbeknownst to me earlier, but thanks to trolling around on facebook a bit, I learned that today is National Cancer Survivors Day.  For all the many contrived days to honor people, this is one I heartily support.  (Of course, I'm a pretty big fan of Savvy Aunts Day as well!)

I had the opportunity to speak to Deana briefly.  She's fighting a head cold, so she sounds a bit stuffy.  This is certainly a concern to me.  It comes as no surprise that I inquired as to her treatment plan, which presently consists of taking Vitamin C energy packets -- these are the powdered tubes that are poured into water.  Her assessment is that this step has shortened the duration.  I do hope so.

At her last blood work appointment, her hemoglobin was an impressive 12.2.  My what a difference two years have made.

So, on National Cancer Survivors Day, I salute all those who are courageously battling this dreadful disease, along with those who have slayed the demon.

Let us all continue the fight to find a cure.

Cinco de Mayo = Deana's Birthday!

Yes, Deana is a Cinco de Mayo baby.  I'm so thankful that she will be celebrating another birthday tomorrow, and she has a terrific mother-daughter weekend planned with Clare.  Every day is a reason to celebrate, especially when living with cancer, but birthdays are extra-special (or so my mother has always said).

As I write, I am six days removed from the Big Sur Marathon, which I ran as a member of the Multiple Myeloma Power Team.  (For more info, visit www.themmrf.org.)  This was my third marathon, and most definitely the hardest.  My training was affected by some foot issues, and,if I am being totally honest, issues with time management coupled with a sporadic lack of motivation caused by the dreariness of winter.

Don't get me wrong, Big Sur is visually stunning.  I would welcome the opportunity to return to the area for a visit that did not involve running 26.2 miles with the wind at my face.  (Did I mention the hills?)

Alone with my thoughts and my music for six hours, I gave thanks for the work of the MMRF and what that work has made possible for my family.  I thought about Deana, a lot.  While I might have been in pain every step I ran (causing me to have to walk more than I had hoped to), I remembered Deana describing the pain of her first bone marrow biopsy, and pressed on.

One week ago, April 27th, marked the two year anniversary of Deana's diagnosis, the day our lives changed and we joined the millions of families who live with cancer.  I had never given thought to us being in this community.  It isn't that I believed we were immune, but since most people in our family have died of heart-related issues, cancer wasn't on my radar.

Two years later, with Deana still (blessedly) in remission, we have settled into our new normal.

There were many people who said we would grow closer as a result of all of this.  To them I always said, if my sisters and I were any closer, we would be conjoined.  That remains true.  I love Deana and Darrie with all my heart and am proud to be their big sister.

The bright side of the experience was that I made 16 trips to Pittsburgh in a 12 month period and got to spend so much time with my sisters and their families.  Being an aunt is one of my favorite roles and I am fortunate to have terrific nieces and nephews who bring great joy.

In the last 12 months, there have been fewer trips to Pittsburgh, but we have instead traveled to some great destinations and made wonderful memories, far more fun than visits to the oncologist. (If you are familiar with the 1982 movie "Arthur," you know that fun is the best thing to have.)

In the coming months, my work with the MMRF will continue as we seek to advance a cure for multiple myeloma.  Progress is being made every day, helping to guarantee more birthdays for Deana and her fellow patients.  More on that in future posts....

For now --

Happy Birthday Deana -- Hope your day is filled with sunshine!

Welcome to the new home of the Big Sis in Burgundy.

For those who were reading my columns in The Myeloma Beacon over the last two years, thank you for joining me in this new part of cyberspace.

I'd like to begin by expressing my gratitude to The Myeloma Beacon for all that publication does to provide information for those of us in the fight against MM.  I was thankful to have that forum to share my family's journey, for whatever help it might provide to others.

Since my sister Deana has been in remission for over a year (and we are so very thankful for that) there is less to report, especially in any regular column cycle.  In addition, it is understandable that the Beacon does not allow for mentioning of specific MM organizations, doctors, etc.  Much of what I would like to share now includes references to my work with the MMRF and my outreach to various entities as we work to advance a cure.  The blog platform will allow for that, and thus, will hopefully enable some of you to lend your voices and support to these endeavors.

For those interested specifically in Deana, she had an appointment with Dr. Agha on March 18th.  Her numbers are all looking good, with her hemo and IgA proteins in the normal range.  This is something I do not take for granted.

More to come soon, but in the meantime, all of us at Team Beat the Hell Outta Multiple Myeloma wish you the very best.