Forever in my heart

By | December 19, 2016
MPN friends meet in Houston

MPN friends meet in Houston: Marina, Bonnie, Kathy, and Joe (left to right)

This photo popped up on my Facebook page today.  

It was taken two years ago.  

The butterfly in the background was significant for all of us.

While ’tis the season to be jolly, ’tis also a time of winter blues and melancholy. Especially when experiencing holidays in new ways… without loved ones. Happy memories help.

My personal experiences with severe illness and confrontations of early demise awakened me.  Along the way, I met some truly remarkable angels on earth. The photo here is me with Bonnie Evans, Kathy Dubin Flynn, and Joe Evans. We had a “mini-reunion” in December, 2014 in Houston, Texas.

Kathy, Joe, and I shared the myeloproliferative neoplasm (MPN) experience for several years. Friendships developed through on-line patient communities.

Two of these earth angels in this photo (Joe and Kathy) earned their wings to the afterlife.
Joe Evans and his beautiful wife Bonnie were the first people I met living with PV and MF when I was newly diagnosed. While Joe avoided the limelight, he encouraged Bonnie to share his health issues and their journey with the rest of us, so we could learn. Bonnie Evans runs the Atlanta MPN Support Group. Full of information, courage, faith, and hope, she made sure Joe got the most living out of his years. Joe passed away peacefully a year ago in August.     Bonnie remains a cherished friend and continues to cheer me on as my bonus life unfolds.

Kathy Dubin Flynn was my bright light and confidante when I suffered through the transplant journey — she cussed with and comforted me through my steroid-induced psychosis many, many times. The “suffering” was episodic during the two+ year journey and Kathy would remind me that it IS worth it and we CAN do it.

We were moms fighting to live so our real selves could resurface. We wanted to let our husbands, Robert and Jim  know how much we love and appreciate them as husbands and fathers. We knew these blood cancers changed us and the dynamics of our marriages and dreams. We wanted to watch our children grow up and become the awesome adults we know they will be. And we wanted to raise our voices to put patients at the center of our health care “system.”

After surviving two stem cell transplants, a damned butterfly glioblastoma invaded Kathy’s brain. My grief pales compared to that of her family, but let me tell you: I was pissed! Kathy bucked up and researched and managed her journey the best she could. She was passionate about creating as many memories with her family as she could. She wanted them to feel with every cell in their bodies how much she loved them. Her family and friends had a most awesome 50th birthday party that Bonnie and I attended a year ago in October. Kathy passed away peacefully a few weeks later.

I hold the essence of these two, and many other friends and family who are gone too soon (but no one asked me) in my heart. There is no answer to “why” I am the only one of the three MPNers in this pic to survive. I’m slowly accepting this fact. Yes, I cry when I think about Kathy and Joe.

So when you see me celebrating big and being boisterous, it is BECAUSE I know how precious and fleeting life is. I treasure the gift of these bonus days/years.  I am modeling for my kids how I hope they will live when I’m gone:

LIVE, dammit!
And BE KIND.
BE GENEROUS.
BE COURAGEOUS.
CHALLENGE YOUR FEARS.
DON’T BELIEVE EVERYTHING YOU THINK.
REMEMBER why Baskin Robbins has 31 flavors.
REMEMBER YOU ARE LOVED AS YOU ARE, not for what you DO.

May the blessings of this holy season be upon you, dear friends.

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