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AUTHENTICALLY BOLD: REBECCA

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Perseverance

 

collateral damage

Unintended damage, injuries, or deaths caused by an action, especially unintended civilian casualties caused by a military operation.

Source: The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.

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Unintended damage caused by a war, perhaps a war against breast cancer in your very own body resulting in collateral damage. The impairments are very real and often reside behind the brave, smiling faces you encounter in a survivor. Despite asking a breast cancer warrior if she’s recovered and well after months of toxic treatments and debilitating surgeries, she is still suffering on a regular basis. How, you ask?

Often times you will not hear about the painful and balance compromising neuropathies in her feet. She hides the stumbling gait: the excruciating pain upon waking, trying to walk like a forty year old and not a ninety year old, from everyone except her husband. Yes, you did see her trip up those steps and hear her joke about her awful clumsiness; however, that smile hides the frustration in the numb feet that caught the lip of the granite and nearly caused a full on face plant, or worse, scraped hands that have braced many a fall.

Nor will she elaborate on the difficulties she faces in buttoning her young daughter’s sweater or fumbling and trying to tie the little shoelaces. The often- times illegible handwriting to the poor teachers in a school note, or the misspelled texts stem from stumpy finger tips that aim but do not always hit on target, are a regular routine event these days, one she just shakes off as a new “normal” post treatment.

Words do not come easy, surprisingly, even for the most motor-mouthed of them all. Regular words feel as if they are on the tip of her tongue, but are nowhere to be found in the circuitry of brainwaves. Disappointment and disgust enter as she tries, she blunders, and she finds a somewhat less-fitting replacement word to continue on in dialogue and unbroken conversation; followed with nervous laughter to disguise the aforementioned disappointment. New words are created as the synapses misfire between mouth and brain creating a weird, and often times hilarious, fusion of two similar words that spurt out simultaneously. Memory is far from what it was pre-treatment, while well-intentioned jokes about age from her spouse are smiled at, a sadness sometimes sneaks in as she *still* tries to get accustomed to the new normal, even five years out from completion of treatment.

Nagging joint pain continues to crash the neuropathy party in her body: a residual daily souvenir of the poison cocktails that surged through her blood vessels systemically; the sole mission of chemotherapy to seek and destroy those cancer cells that formed a mini-brigade against your immune system. The trudge against the very cells trying to mutate and possibly kill her, instead leaves her with a significant amount of collateral damage. While the surgeries may have been successful, the skilled surgeons’ knives left scar tissue and disrupted lymphatic flow – highways re-routed and blocked, further adding to swollen arms and hands as lymph fluid has nowhere else to now go. She does not complain about compression sleeves or pumping, after all she is alive and wakes each day grateful for another day of memories, even if they are foggy.

Phantom pains surface every so often, from breast tissue that is no longer there perhaps, causing her to grimace through the smile at the soccer field because she wants to grab her breast in pain, but knows it is inappropriate in a field full of tween boys. Radiated tissue is harder than non-radiated tissue, a reminder she experiences as she shifts from her right side in bed, to her left side instead and back again because it is too uncomfortable to lay upon that previously scorched side.

breast pain

Chemo weight is nearly impossible to remove, despite 4,552,854 burpees done each week or marathons run. Depression tries to overtake her brain with the weight frustrations, but she smiles again knowing she is alive and the continued efforts to perfect said burpees helps her health in other ways despite the flabalanche that surrounds her middle. Strength may be defined in her life, not only by the size of her deadlift, but instead by knowing she faces the ongoing collateral damage with every ounce of muster she may gather.

Bathing suits are anxiety provoking to most women, but add large surgical scars and uneven, lopsided breasts, and she has to summon the courage to find a flattering suit – one that covers the Frankestein-like marks upon her chest, the radiation tattoos, and helps to adjust the boobs from not being overly stared at for the discrepancy in size. She may want to wear a sign that warns the general public about the scars and misshapen body parts, but she quietly smiles and builds sandcastles anyway.

Despite her unconditionally loving spouse, she may still cover up and hide when he walks unannounced into the bathroom as she exits the shower. She cannot help but wonder what goes through his mind: will he notice the significant different texture in each breast? Will he be turned off by the drastic size difference? Wait, that won’t bother him as much as the anchor-scars that surround each breasts or the rippling or pulling skin from deeply buried scar tissue within? She will then escalate into additional worrisome thoughts: will he be freaked out by the hot flashes and the night sweats? Will he find her early morning hobbling eerily reminiscent of her parents’ old-age disabilities? The collateral damage finds its way into her personal relationships, as if to add insult to injury.

Everyone seems to consider cancer survivors are well after they have beaten their disease, or rather have remained in remission or have no evidence of disease. Many people are unaware of the residual side effects that remain in the weeks, months and years after treatment has long ended. Cancer survivors are told that many of the side-effects will lessen with time or go away all together; but for many, that is not the case and the collateral damage is with them for a lifetime.

Many of us may simply be so thrilled to be alive and to remain free of the disease, we feel this is the “price to pay” for life itself. There are some of us out there that do not cope as well, and wonder if the “price to pay” was worth the daily pain, the new-found disabilities, the slack performance in previously stellar areas of our lives like work and again; the regular amounts of agony left behind when the cancer was obliterated.

The war against cancer, especially breast cancer, leaves significant impairment on the life of the person affected. Many facilities are now only just focusing on survivorship; life after breast cancer and the well-being of the patient once treatment has completed. Recovery needs to be more than follow up appointments every three months to ensure the disease remains at bay. Breast cancer patients need to be sure to continue to advocate for their quality of life post-disease, being educated on residual side-effects that are very real, and knowing what pain is normal and what options for pain management are available.

In the meantime, she may be grinning and bearing it, so give your breast cancer friend a warm and gentle hug to soften the achy joints, offer her compassion as she stumbles in the grass unexpectedly and as she fumbles around for words to add to your conversation. She is learning to live within her post-war environment chock full of collateral damage, despite wearing her best outward smile.

In the meantime, breast cancer survivors are encouraged to participate in the Dr. Susan Love Research Foundations studies – more information may be found here: The Collateral Damage Project

HOW-Question-the-cureBlog_zpsdf89fde2

 

Right on Hereford, Left on Boylston

boston rjs numberThe journey to the Boston Marathon is truly unlike any other experience. Sure, there’s the twelve week (or longer) training programs you follow to pave the way for your body and your mind to start preparing for race day itself, but nothing, truly prepares you fully for anything and everything that can happen.

The winter of 2013-2014 was known as the one plagued by the Artic Vortex; many of us runners had no choice but to log mile after mile after mile in temperatures that would barely break the freezing point. We were layered upon layered with clothing, gloves, hats, face masks, wool socks, Yak-Trax and more to muscle our way through what Hal Higdon told us to for each respective week.  Our plans revolved around when we had to run, how long we had to run and life in general simply had to follow that course.

We runners try to do everything in our power to prepare for the big day, whether it’s the veterans who have done countless marathons, or us newbies who have only ventured as far as our half-marathons and our longest training runs have taken us. We use body glide to lube up every part of us to avoid the dreaded chafing everywhere that skin may rub.  We clip our toenails super short. We find clothing that makes us most comfortable, often ditching the undies and running commando in the simplest way to prepare. We carb-load the week before and we drink gallons upon gallons of water or Nuun-laced water to be sure our glycogen stores and hydration levels are prime come the day of the big dance.  We double, triple, quadruple check our supplies and make sure in our typical OCD style that EVERYTHING is ready and we are PREPARED.  We are a neurotic bunch.  We check again.  Yes, we do.  (Okay, we check one more time, too).

Many of us are not talented enough to qualify via time for the prestigious Boston Marathon, so we offer to fund-raise and pray for a spot on a charity team. I was fortunate enough to land a spot on Team Eye and Ear for the Massachusetts Eye and Ear Institute and given a minimum (eek) balance I had to raise in exchange. Coupled with the intensive training that lied ahead for me back in December, I also had the challenge of raising several thousand dollars.

boston team eye and ear jerseyFast forward and suddenly, April 21st was upon all of us – race day was here. Carefully laid out clothes were put on after pounds of body glide was applied. For me, I body glided nearly everywhere because at the Disney Princess Half-Marathon I experienced some horrific chafing on my inner arms due to the excessive humidity.  Deodorant was forgotten (and yes, I noticed profoundly of that forgotten task around mile 20 – peeeeee uwwwww). I apologize to any and all people I hugged smelling like a rotten rhinoceros.As luck would have it for me (TMI ALERT!!!!!), my period showed up just in time.  @#&%$@?, thank youuuuuuu body.  (Yes, I can hear all the women uttering complete empathy for me at this point whereas the unfortunate men reading this are raising eyebrows and saying we could have done without that piece of information).  Running with your period sucks okay and it changes EVERYTHING.  Fortunately, for me, I only had to relieve myself ONCE during the race so I chose to ignore whatever else was going on down there until I got home that night.  Your assumptions are correct, I last peed about 12:30 pm about mile 5-6 of my run in Framingham and I did not go to the bathroom again until 9:30 pm that night.  Welcome to the land of Marathon running.

Filled with nervous energy that morning, we shuttled to Athletes Village in Hopkinton, which looked to me as Woodstock should have looked, except we were bouncing around to a nervous energy, not some hippie style music, and no one was smoking anything (maybe we should have been?). We made the half-mile trek with literally thousands of others to find our way downtown to the most profound starting line of my life. All this preparation for months, and here I was, quite unsure of what lied ahead of me and what to really expect.

Just like that, we were off…and running, as fast as thousands of sardines packed in a 29 foot stretch of starting line and road would allow. I was overwhelmed by the amount of spectators already screaming my name and ringing cowbell for me. Before I knew it, mile three was approaching and I realized I better start grabbing some water as it was much hotter than the weatherman had prepped me for. As soon as I started worrying about the weather, I spotted some of my family on the sidelines freaking out! My sister-in-law, her husband, their children were so happy and cheering for me – so I stopped for a selfie with them and on I went.

Somewhere along the way, I grabbed a drink of Gatorade (against my better judgment) because we were coached to alternate water/Gatorade every other mile. Having this be my first marathon, I thought it would be wise to listen to the professionals. I should not have. I know my body better and I have always used JUST water. By end of mile six, I was feeling particularly hot and incredibly nauseous.

The week prior to the marathon, I woke up with a massive chest cold and barking like a seal.   #@#(*&%@#$#(@*!!! All winter I remained healthy, with the exception of a one day stomach bug, but NOW, one week prior to the race of my life, I am hacking up a lung?!? I did not prepare for that.

After ingesting the Gatorade, I began coughing and felt like each cough would end in a projectile of vomit. The phlegm from the chest cold seemed to be hovering behind my trachea covered with sticky, sweet Gatorade.  Trust me, have you ever felt like puking in front of thousands of spectators? Not a good feeling whatsoever and I struggled to keep the contents of my stomach from surpassing the hollow in my throat. The last time I puked in a race was the Falmouth Road Race in 2003 when it was ninety degrees out and 90 percent humidity. Somehow, as the coughing worsened, I found a small stretch with no spectators and a bush – I ran over, gagged a few times and dry heaved into the bushes until the Gatorade was no longer in my system. Onward, I went.

My friend, Michael, had caught up to me earlier in the race, and we were running together as I started to gag on Gatorade.  I apologized for having to cough, gag, sputter, puke and we continued on. Poor guy. (Believe me, I *tried* to get him to go ahead and leave me be).  Within minutes thereafter, I felt a sharp snap in my right hip. @#(*$&#(*@#. A few minutes later, four more snaps in my right hip and the excruciating pain ensued.  I was having a panic attack about being able to finish the rest of the race, as I was only one-third of the way in. As the pain progressed, my weaknesses surfaced and I thought strongly about bailing out of the race at mile ten and again at mile twelve. As we passed two medical tents, I was lured by the premise of listening to the pain in my body but I knew too well that the medical attendants would not let me re-enter once I stepped out. Onward I went. I had no choice.

Race day hit nearly seventy degrees at its warmest point. Only a fellow Team Eye and Ear teammate from Florida was adequately equipped for the pools of salt and sweat that rushed down our faces last Monday. Several people I know were struggling with staying adequately hydrated, perhaps battling severe nausea thereafter or even having to drop out at a certain point because of confusion and disorientation.  Others simply had to take more walking breaks or slow their pace in order to persevere through the afternoon highs.

The finish line of the Boston Marathon is much more symbolic to me and to many of my friends. Sure, the famed marathon is bigger than life and surreal. However, for me, to cross that finish line meant so much more – as I blogged previously, 26.2 Examples of Inspiration, finishing this trek from Hopkinton to Boston was the completion of a few chapters of my life allowing me to move forward. The venture over the vinyl mark on Boylston Street really does mean I am done with cancer, those steps forward are more steps away from my deceased parents, the tumultuous years and ensuing bad feelings that linger, but more importantly, my triumph in crossing that finish line gives other cancer patients *hope* – and I will say it again, I am living proof that cancer can be beaten and we are able to take back that control we lose during our experiences.

Cancer is a very scary world and those of us who have been afflicted often have fears of recurrence, despite all sorts of statistics thrown our way and milestones that we strive to hit. Knowing that I took my body back and completed the Boston Marathon may just give someone else the little bit of hope that they need to persevere in their own daily marathon. For if I have given one person that teensy bit of hope, I will feel very good about taking my journey here.

Needless to say, the race carried on and I saw friends and family and critical mental points. I knew after the twelve mile mark that I could really not ever bail; and with Michael’s encouraging words (“We will walk the rest if we have to!”), I pushed through the pain. My mind constantly battled with my body; and yet, as soon as I thought of a few of the names I had carefully written on my shirt, I found more strength to put one foot in front of the other for another mile and another mile thereafter.  I saw beloved friends at mile 6, mile 15, mile 16, mile 17, mile 18, mile 19 and again at mile 21 before those on the final stretch.  Thank you for helping to carry me forward.

boston friends picboston iacaboni pic boston mile 18 pic

My last meltdown was at mile twenty-two, not only was my hip slowly about to come out of its socket, but the blisters on my neuropathy-filled feet were popping with every step. Thinking we had just two miles ahead of us, I forced myself to quell the pain. Suddenly, an awesome cheerleader on the side yelled, “You’ve got this guys, only four miles left!” I angrily turned to Michael and asked him to repeat what this spectator had just screamed. He confirmed alright that we had four miles left to go. Mentally prepared for two more miles of extreme discomfort had just doubled before my eyes.  Yet, I must go on as the Prudential Tower was in sight. Moments later, I passed a man with a prosthetic leg and reminded myself that I had NOTHING to complain about.

I thought about Jackie and Cara; I knew they would need me to finish this race.  I pulled up my blue and yellow Boston Strong inspired Athleta running capris, courtesy of my best friend, Karen who is currently undergoing treatment for leukemia.  I thought of her literally…on…my….ass…..  How fitting?  Karen was riding my ass to get to the finish line.  Suddenly, I could HEAR her voice telling me to dig deep and finish this damn race.

We *finally* turned right onto Hereford Street and I looked up the slight hill to see that the crowds were still in full force on Boylston Street. Despite the hours that had transpired, the message of Boston Strong rallied through shortly after 6 pm, when the majority of the other runners had long since completed their race. Michael and I charged on and looked at each other – we both verbally announced that once we turned onto Boylston Street, every step of the remaining two-tenths of a mile would be RUN to the finish line.

Michael pulled ahead of me, while I was trying to soak in every face that was then screaming my name, clapping for me, and ringing more cowbell for me. I heard my name in a familiar voice from behind me and across the street, which with my hearing impairment is something of a miracle in and of itself, only to see my good friend Deana and her significant other, David cheering me on. I could not stop or go backwards, for fear I would not finish with my injury, so onward I ran.

As the crowd got louder, I threw my hands up in the air in triumph! Twenty four years after I first wished to run the Boston Marathon at the age of sixteen, over six and a half hours after I first stepped over the starting line in Hopkinton, and here I was……..running down Boylston Street. The tears escaped me and the inconsolable sobbing began. I had runners before me, I had runners behind me, but here I was in the middle of the street with thousands of people cheering my name and applauding my finishing efforts. For that brief moment in time, this was MY race and I felt as if I were Meb Keflezighi about to soar across that finish line.

I spotted my family in their red Team Eye and Ear shirts in front of Crate and Barrel, I ran over to hug them and sob all over their happiness-filled faces. My oldest quickly proclaimed, “Momma, go finish YOUR race!”  I hobbled on another 200 yards to the blue and yellow line that signaled the completion of my journey. More tears, uncontrollable sobs and a feeling of victory oozed from every ounce of my body.

boston official finish

A fellow Team Eye and Ear teammate had finished at the same time and we were instantly interviewed by an unknown reporter before I was greeted by my exuberant family and a couple of work colleagues. I had a compelling need to go get my medal and hobbled down further until I could see my beloved friend Lauren waiting for me. Lauren is a volunteer who distributes medals every year and I knew I could get my medal from NO ONE but her.  I had fears that she had left earlier in the day since I came in so much later than planned. However, I saw her standing in the throngs of medal presenters and I dragged my leg to get there as quickly as I could.  Upon Lauren’s notice of me coming, I burst into yet more tears and sobs as she grabbed a medal to place around my neck. I hung on to that poor petite girl for longer than necessary, embraced my hours-long body odor all over her tiny being.  I could not stop, I cried hard tears for finally being at this point of closure.

boston lauren rjs meda

I do not remember much thereafter, other than my NEED to get to the medical tent for my hip. I demanded ice and some ibuprofen from the kind medical attendants after they laid me on a cot. I was given ice in no time, but told they do not disburse medicines of any kind. I was slightly annoyed because this *was* the medical tent after all (I realize afterwards why they do not distribute, but in that moment, I NEEDED ibuprofen). The physical therapist refused to work on me and the doctor came over to evaluate. I insisted that if he could not give me ibuprofen, then he better damn well give me a shot of vodka for the pain. Unfortunately, they denied me that as well but they did get a good chuckle out of me. The doctor suggested I had a stress fracture, despite my description of feeling something actually tearing in my hip. He gave me crutches and ordered me to call my doctor the next morning. I declined the crutches with a disgruntled “no, thank you!” and a nurse told him I had injured myself at mile seven. He looked at me with a wide-eyed gaze and asked in disbelief, “You just did 19 more miles with that injury?” I smiled and said, “Yes, we ARE a special breed, aren’t we?” The doctor discharged me from the tent and I met my loving family to find our way home. Little did I know that not only was the Copley T station closed, but all surrounding stations were also closed for safety. It took me another hour to walk from the medical tent to Park Street station so we could catch the T to Alewife for our car ride home.

April 21st left me feeling pretty beat up: blood blisters on three of my toes and I will lose at least two of those toenails; a foot sized blister on the ball of my left foot (over-compensation for the right hip injury?), and a torn hip flexor. However, all of these injuries will heal quickly as the body is a remarkable machine.

legs tired run heart

My memories are rampant:

  • Participating in the 118th Boston Marathon in the year after our city was shown some of its darkest memories helped add to the display of perseverance, strength and determination shown by those affected last year, as well as those that trained through tough New England weather to be ready.
  • Raising nearly $12,000 for Massachusetts Eye & Ear Institute and meeting some of the kindest people on earth on my Team Eye and Ear; but also by securing donation after donation from the good people I have in my life who wanted to not only be a part of this historic day but to carry me along in this journey of a lifetime.
  • Taking that *stroll* down Boylston Street to the finish line……. these memories and my finisher’s medal will last me for my lifetime.

Thank you.  Thank you for reading this.  Thank you for supporting me in my never ceasing talk about the race or my training.  Thank you for your donations.  Thank you for being the world’s best cheerleaders.  Thank you for making me feel like I am a superhero and that I can do anything I set my mind to doing.  Thank you for positively changing the world we live in and helping Mass Eye & Ear in making their strides to help each other as fellow human beings should.  The 2014 Boston Marathon has restored my faith in humanity.

It is not too late to continue to make a change, donate here:  http://www.crowdrise.com/teameyeandear/fundraiser/rebeccasoulliere

Now, we move on to our next, as of yet undefined, adventure!  Any ideas?

(No running quite yet, thank you very much.  I just cannot wait to get back to my crew at #Crossfit 978.)

boston believed she could so she did

P.S.  If your stomach can handle it, here’s the physical toll 26.2 can take on you:

photo 5 photo 4 photo 3 photo 2 photo 1

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