February 2014

How Do You Say Good-Bye?

“Here am I
Yet another goodbye!”

Once upon a time, I met a beautiful woman at our local gym.  Jackie had been introduced to me by one of the gym employees and we instantly shared a common bond – we were both battling breast cancer.  In fact, I had been mistaken for Jackie once while trying to see if there was room for me in an overly packed Power class.  My bald head and Jackie’s bald head, both covered in similar pink baseball caps was the signature look for us as we walked the gym halls.

We instantly bonded and shared our war stories:  our laughable kinky, out-of-control curly *pubic* hair regrowth on our heads that had been obliterated by chemotherapy; our melancholy comparison of multiple surgery scars; and overwhelming yet simple gratitude to be alive.  We both had young children when we met; Jackie’s children were then 10 and 13, whereas my children were 10, 7 and a newborn.

My diagnosis came about two months before Jackie’s diagnosis; respectively in August and November of 2007.  When we met in 2008, we had both just finished our treatment protocols and were now trying to regain our health, or at least some sense of control over it.  Our treatments were very similar despite two very different forms of breast cancer and the distinct paths our situations necessitated.

We both openly admitted our fears to each other with an instant trust that only one cancer warrior has in another.  Despite being relieved that our chemotherapy was over at that time, we were terrified of recurrence and we both felt horrifically vulnerable.  Without the poison cocktails surging through our veins, would that not give the cancer an opportunity to come back?  We agreed to embrace our new normal and find a way to live stronger.  Somehow, we had to live a life where fear would not cripple us, but we both silently acknowledged that fear was ever present deep within our core.

Secretly, I had huge fears.  Statistically, Jackie’s cancer was the type that typically would not come back and if it did, it would likely be in her breast area again.  Whereas, I had the newly discovered triple negative sub-type that was incredibly aggressive and has the highest rate of recurrence.  Not only does the triple negative type come back with a vengeance, it’s typically in your lungs, your brain, your bones…..I can live without breasts, but I cannot live without those critical organs or body parts.  We often rattled on about the latest we had “heard”  in the breast cancer world; whether it was from our own oncologists, online research, or via word of mouth from others who knew of someone battling breast cancer.

Not two months after our treatment wrapped up and we had shared our fears of recurrence with each other, Jackie shared with me that her cancer had come back and was present in lesions on her lungs.  Despite the sad news, we remained optimistic that she would battle it again and then we would return her to yet another new sense of normal.

In between, we continued to live our lives clinging to any degree of that aforementioned normalcy:  we went to our daughters’ soccer games, we worked at our respective jobs, we went to the gym, and we spent time with our families and friends.

jackie riley shannon

Unfortunately, Jackie’s new sense of normal was a non-stop battle against her cancer.  Lungs, brain, bones….her cancer proved to be more than traditional therapies were meant to target and destroy over the next few years.  When Jackie called and mentioned she had lost hope, that all local treatment options were about exhausted; Jackie’s sister, her friend and I accompanied her to Dana Farber to see what else could be done.  Dr. Freedman, a specialist in breast cancer with brain metastasis, educated all of us on the multitude of clinical trials and experimental drugs that could be chosen for a treatment protocol by Jackie.  Optimism and hope found their way back into Jackie’s life that cold but bright winter day.  The four of us cried giant tears as we listened to the tiny doctor.  Jackie’s shoulders relaxed a bit from being up in her ears and her radiant smile lit up on her beautiful face.  Never under-estimate the power of giving someone hope.

jackie sister lisa me

Jackie continued to press on while the rest of us did what we could: endless dinners delivered, rides given, successful fundraisers held, late night texts and cravings satisfied, and anything else that would help her find the strength to press on and fight this disease.

jackie sherry me

jackie invite

“One by one my leaves fall.
One by one my tales are told.”

Jackie’s first clinical trial was successful, at first.  Her brain cancer shrunk and we were so hopeful that Jackie would live a long life, albeit continually on treatment, but at least to see her children grow.  Suddenly, as quickly as it started to work, the clinical treatment ceased to do its job and Jackie was put on another trial.

By the third clinical trial, Jackie was horrifically sick with side effects.  Jackie called me out of the blue one day and asked to meet me urgently the next day for “dinner” and I agreed.  I spent the next twenty-four hours pondering how I was going to handle our dinner meeting, because inside, I knew what Jackie was going to tell me.  My anxiety grew with each passing hour and I had no idea how I would keep myself composed in Jackie’s presence nor arm her with the dose of strength I anticipated she needed.

After the typical cordiality and warm hugs, we sat down and Jackie meant business as she expressed to me, through tears that she could not battle on in this current state.  Jackie explained to me that the quality of life was not worth it and she could not fathom her children seeing her so sick from chemotherapy; she could not be house bound with ill side-effects of a treatment that was supposed to prolong her life.  She just could not do it.

I struggled greatly with hearing the news of Jackie’s decision, as my knee jerk reaction is to do whatever you have to do in order to survive.  Cancer has taught me so much in five years, but namely, that any given person has the right to their body, their treatment and how they proceed.  The current medical trial had taken everything away from Jackie, and somehow, I had to help her find it again.  We worked through a dialogue of a worst case scenario to her current situation.  I reminded her that she, and only she, had the right to decide what was the course of action she wished to take – not me, not her husband, not her children, not her friends – none of us could dictate how she should feel, what treatments she should have and what was right or wrong for her.  I did highly encourage her to call her oncologist at Dana Farber and relay the same info and that this clinical trial simply was not working for her, they needed to make a change.   Within a couple of days, Jackie did call her doctor and shortly thereafter, she started yet another trial.

“It’s no lie
She is yearning to fly.

Throughout all of Jackie’s treatments, she continued to push forward and fight this horrible disease.  Jackie would often confide that she was tired…… immensely tired, actually exhausted, and sick of being sick.  Yet, somehow, she managed to persevere despite the obstacles thrown in her way.  She paved the path for so many of us to really see what consummate courage and bravery are all about.

jackie parade

Selfishly, I pulled back a bit these past few months from Jackie, as I knew the inevitable was on the horizon and inching closer.  Reluctantly, I struggled with being *the face* of the living in Cancerland,  as the grim reality of her fate was widening.  I asked myself:  maybe she does not need me to help her anymore because maybe she is just tired of cancer – period.  Instead of being up front and center with ways to support her, I took a step back and helped from behind the scenes.  When people asked how to help Jackie or her family, I simply directed instead of coordinated.

jackie yellow

Jackie would never have said it, but I just could not help but think about how hard it must be to look at the person who rallied with you in those early days of 2008; looking at the very person who got better; when you did not.  I am living proof that cancer can be beaten and I live affirmatively and outwardly so, so that others may gain strength and iron-will from that.  However, maybe Jackie did not want to see that regular reminder that her fate was going to be much different than my own. You may call it survivor’s guilt, or perhaps I was selfish in trying to protect not only Jackie from me, but me from me.

After the doctors put Jackie into hospice, I put my big girl pants on and went to visit her.  I was warned by family that she may not be lucid, may not recognize me or even talk to me – but that it would be good for her to hear my voice.  I have not really ever felt as vulnerable and scared as I did that Thursday morning.  How do you say good-bye?  Where was my Life 101 Manual when I needed to reference it?  My insides screamed so loudly I swear the CNAs and nurses I passed could hear the angst.

Surprisingly, Jackie was alert and recognized me.  Within seconds, she had the saddest look on her face and I immediately interpreted it to be the reality of life versus death, in me versus her.  I asked her if it was okay that I was there and she replied yes.  I instantly chided myself to act normal.  How do you say good-bye?

We chatted for a while about different things, namely the kids.  The war against cancer was demonstrative in many little ways:  the head tics, the involuntary hand movements, and the gentle transition in and out of lucidity.  Jackie wanted real soda, not the crap stuff the care center had.  I promised her someone would bring her some real Coke.  She smiled the warmest and happiest smile at my promise.  Shortly thereafter, I sensed that Jackie was not present and my emotions took me by surprised.  I gave Jackie a hug, told her I loved her and I would see her soon.  I could not say good-bye.  I ran.  My tears ran faster.  I could not breathe.  I was suffocating and drowning in the tears that poured from my sockets.  For four long days, I struggled for breath, I tried to see through salted tears and bloated eyelids and my heart just about burst underneath the weight of the Mack truck that sat upon me.

Jackie’s battle hit me squarely where it hurts the most; this fight was much too close to home and our family is struggling with the reality of just how much this situation is a “could have been” and counting our blessings that it is not, all while grieving for the hand that fate dealt to Jackie and her beloved family.  My brain struggles with the emotional roller coaster that comes with being so close to the journey through Cancerland and how this is not about me, or you, but just all encompassing about Jackie and her family.

However, my heart is broken with the loss of Jackie.  I am relieved that her body will no longer fail her and that her spirit is now free from the exhausting world of terminal breast cancer.  I am deeply and painfully saddened for the loss, for her family, for her friends and for myself.  Jackie will always be forever etched into the deepest valves of my heart.  I will offer her family unconditional love, especially her favorite girl who I hold so very dear.  I do not know why the statistics switched between us, but I do know that I intend to live a life full enough for the both of us.

  • Each time I visit Maine, I will think of you, Jackie.
  • Each time I smell the luscious lilacs in spring, I will think of you, Jackie.
  • Each time I bite into a fun Jelly Belly jelly bean (no substitutes, people!), I will delight in thinking of you, Jackie.
  • Each time I indulge in the super calorie horrific biscuits and gravy for breakfast, I will laugh and think of you.

jackie hand hide

Jackie brought people together and warmed their hearts with her infectious smile and her quirky sense of humor.  People wanted to give Jackie their strength, their support and their will to help her battle on.  Over six years, Jackie waged war on a horrific disease and yet, gave to all of us more smiles, more laughter and more memories.  Jackie will want us to continue on with the smiles, the laughter and the memories and I intend to do just that; as Jackie has given me the ultimate gift of strength in a time when I cry and bleed that I have no more strength left.

Fly free, J.  Fly free.  ❤
jackie beautiful

“It’s no lie
She is yearning to fly.
She says Adios, says Adios,”

(Enya, “One By One” lyrics)

Talk To Me, Baby (Sexy Voice, or Not)

Recently, I have seen a link go somewhat viral about how people should just stop bragging about their lives on social media.  Apparently, people are “fed up” with scrolling through their Facebook newsfeeds and reading  things about your “perfect” spouse, your “perfect” children, your “perfect” jobs, your “perfect” workouts……..and my kneejerk reaction is,  “Alrigggghhhhhttttt, simmer down sweetcheeks!”

Social media according to Wikipedia:  Social media refers to interaction among people in which they create, share, and/or exchange information and ideas in virtual communities and networks.[

Right?  The creation and exchange of user-generated content about whatever said user desires to share openly on the platform in reference (i.e. Facebook, Twitter, and so forth) is what makes social media so much fun.

I was super reluctant to join Facebook, especially back in 2009ish as I was just coming off of my cancer treatments and putting myself on line felt more vulnerable than I was already feeling.  My best friend convinced me to do it by saying it was so fun to reconnect with some of our high school friends and generally keep in touch on a more regular basis in everyone’s lives. 

Fast forward to 2014 and I have a hard time envisioning life without social media.  Thanks to Facebook, I have connected with childhood friends from Oklahoma and I am able to reflect back on happy memories with them, but see where their lives have gone since I moved from Oklahoma in 1987.

Thanks to social media, I am able to use my experience as a cancer survivor to talk to other cancer warriors regardless of geography and time.  Two of my Facebook friends connected with me because they had the unfortunate diagnosis of breast cancer while pregnant, much as I did.  We share our war stories, we share our babies’ milestones and it gives me great comfort to see their littles thriving much the same as my chemo baby.  Countless others on my friends list are cancer survivors as well and it’s a click of a message button and we are chatting about our fears, our strengths, our stories and so much more.  With a few keystrokes, those battling particularly hard in their disease are often given virtual support from countless others; support that is so monumental it may just be the comforting words they needed to lift them up through their next treatment, surgery, or bad day.

The aforementioned examples are only a couple of ways that social media has enriched my life, but let’s talk about your life and that so-called bragging, for a minute.

I want to hear ALL about your children – the good, the bad and the ugly.  If your child did well on his report card, then let us know.  I am proud of your child, much the same as you are proud of his academic accomplishments.  If your children are going through a tough phase and make it exceptionally hard to be a parent, I want to know that as well because then I know I am not the only one struggling when he/she talks back, tests my boundaries and learns a necessary life-lesson.

I want to hear ALL about your workouts.  Yes.  I.  Do.  Some folks have taken offense about other people sharing their workouts.  For me, I do not feel inferior or bad about myself when others post their workouts.  I am PROUD of you for telling me about your new PR at Crossfit.  Damn, straight, I am (and then I am secretly – or not – coming after your PR, or wait, I mean my own PR) happy to hear about your progress.  You had a phenomenal run?  Fantastic.  I know I am not the only one trying to improve my physical being and it inspires me to see others running their first 5k, or completing their Crossfit “FRAN” in an unbelievably insane time, or simply hiking through the local woods.  Why should one feel bad about exercising their body and sharing it with their friends?  I would not have ever signed up for a triathlon, or an Electric Run, or a Undies Run, or even the Boston Marathon without the push of like-minded friends on Facebook.  Many people I know are now less intimidated by the world of Crossfit as well, by my virtual display of my continued love-affair and my brutal honesty in posting the good, the bad and the ugly about snatches, double-unders and Toes To Bar.

I want to hear ALL about your new house or perhaps your new car.  Seriously.  These purchases occur only handful of times in our lives, why would I not want to congratulate you on that new vehicle?  Sure, I may be slightly envious if that new vehicle is one of those trendy retro Camaros, but I will be happy for you that you earned it or have good fortune enough to select that car for yourself.  If you have a newly remodeled, beautiful sunroom that overlooks your pool, I may just invite myself to enjoy it with you!

I want to hear ALL about your endeavors and displays of kindness.  I want to hear ALL about what inspires you.  If you are fundraising, I want to hear about it and then I may choose the ability to support you in the cause that makes me feel good.  If you are walking for pink or for hunger, if you are running for autism, if you are baking for children with cancer, if you are promoting mental health, if you are supporting the homeless, or if you are PTO – let me know.  When has sharing acts of kindness had any ill effect, ever?  In fact, I believe it inspires more acts of kindness and we all can use a world full of more kindness.

I want to hear ALL about your funny moments and the things that happen in between.  Many of my daily smiles are brought about by your verbiage of a particular “Out of the Mouth of Babes” moment, or an incident worthy of being on “America’s Funniest Home Videos”, or some random funny occurrence at the gym. 

With the helter -skelter that surrounds each of us, the ability to use a social media platform to engage in your life even though our days are chock full is a wonderful thing.  I love being able to bump into someone in passing and give them a hug; because they are struggling, they are thriving, or they are just them.  Thanks to social media, I feel as if I am along for YOUR journey and that is priceless.

So, just do it without another thought…… to me, baby.

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