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AUTHENTICALLY BOLD: REBECCA

BETTER, NOT BITTER

Month

October 2014

Before My Eyes (My Life Flashed)

Before my eyes, last week, my life flashed in front of me. The anxiety that permeated my very being is different than the scare I felt yesterday, when a giant extension ladder fell off the top of the box truck in front of me on the highway. Sure, my heart catapulted upwards into my throat providing an instant gagging feeling and surge of adrenaline as my mind processed the speed of the escaped ladder careening towards my vehicle at least sixty miles per hour or more. As I swerved to avoid the now skidding trajectory, I thanked my guardian angel for allowing me the sense to have at least four to five car lengths between my car and this truck. Scary? Yes. Was I more freaked out with my medical incident of last week? You bet I was.

What happened last week, you ask? I thought I may have cancer again. My life literally flashed before my eyes and the fear of my children and husband growing up without their Momma and wife became surreal.

People assume because I remain in remission from my cancer, that all is well – including me. Heck, that girl is six years out from finishing her treatments…..why is she *still* talking about her cancer? Another friend innocently remarked, “Well, you hit that five year mark, why would you have cancer again?”

Recently, in the past year, I finally graduated to what I call the “big girl” schedule for my oncology follow ups – I only have to go annually now. Yes! Once a year visits to ensure my health remains solid going forward versus the every three month schedule I was on for five years. As much as I wear these oncology graduation milestones as a badge of KickAss, there is a little piece of me that has a heightened sense of anxiety that I only see my miracle workers once a year. A year is a VERY long time in Cancerland.

Last week, I confidently announced that I was going to walk into my oncology visit for my first annual checkup in my typical badass style. I was going to give love to my beloved doctors and be on my way in a half hour or less. After all, I have been working out at least three to four times a week and my nutrition has never been better. I finally have my joint pain under control, whether it is from the remnants of my chemotherapy collateral damage or actually from the rheumatoid arthritis. It has been several years since I have felt this good.

BOOM. CRASH. SREEECCCCH.

The sounds of my world coming to a skidding halt after I pointed out what I thought was a little nothing lump on the back of my neck.

On sight, my medical oncologist believed it to be clinically benign, but in Cancerland everything has to be proven otherwise…meaning a biopsy has to be done to ensure that a strange lump is non-cancerous. In triple negative breast Cancerland, I have recently learned that all bets are off – this disease is a beast in and of itself and everything, I mean everything, must be ruled out for cancer regardless of how much time has elapsed since treatment. Oy.

My doctor said she would schedule a fine needle biopsy for me and we would get it done. Fine. I was calm and collected. No big deal. I remain healthy, I thought to myself. Moments later, my doctor came in and announced that pathology was on their way over within fifteen minutes. Cool.   Let’s just get this done today.

The pathologist walked in and promptly asked if she could perform the biopsy with no lidocaine, as it causes the area to swell and make it harder to obtain a sample. Sure. I have had three kids with no pain meds, what’s a little needle to the back of my neck. Eek.

After jabbing the needle around the lump in my neck, the pathologist seemed slightly frustrated. The lump was hard and dense, not allowing her to get any tissue sample to review under the microscope. Did I mind if she tried again? Sure. The latest images of The Walking Dead entered my mind again as I let this sweet, petite woman jab yet a second needle around the back of my neck. Thoughts permeated my brain like: “Is she close to my jugular?” “Boy, I have been hanging around the gross kids and their stupid movies too long now!” “Oy, what the hell….why is this lump hard and what does this mean?”

The pathologist was not successful in obtaining a tissue sample from the second biopsy. Two neck stabbings down and no results on what this thing was in my neck. I kept my cool. Previous fire drills (aka medical scares) have allowed me to try to remain calm and collected until my medical team gives me a reason to be otherwise. (Okay, my bowels were starting to gurgle!)

My medical oncologist returned and said we need to figure out how we will biopsy the lump so we can know exactly what it is. After she left the room again for a brief period of time, she returned but this time with my beloved surgical oncologist a step behind her.

“Ohhhh, look who I happened to find strolling down the halls!” She exclaimed. The partially retired Chief of Surgical Oncology, two steps behind my doctor; the man who helped to save not only my life, but the life of my unborn child. After I jumped up to give my beloved doctor a hug, I then took pause……they’ve brought the big guns in. Holy poop. I started to debate myself: Dr. Q and I have a special bond, is he here because he loves me and wants to be sure I am okay? Dr. Q is top notch and knows his way around Cancerland….did my other doctor bring him in because…..well, you know……my heart-rate quickened.

Long story later, the big guy decided I needed a punch biopsy and right then and there. He would do it himself, in fact. As relieved as I was to have my savior there and to do the procedure himself, my nerves were on high alert. In fact, during the biopsy itself, I had what I consider my first panic attack. I nearly stopped the biopsy because my heart was pounding OUT OF MY CHEST. If I ever felt like I was having a heart attack, it was at this very moment when my doctor was carving a hole into my neck.

After the punch needle biopsy, my doctor sat down and sighed. With that sigh, he shared with me that triple negative breast cancer can metastasize to the skin. Wait, what? What the what, what? I fiddled with my hearing aid to be sure I heard him correctly.

Post treatment I have been coping with the fear of a recurrence; after all, triple negative breast cancers usually come back in the liver, lungs, brain, bones…….but the skin? That was a new one for me. A quick jaunt to my Triple Negative Breast Cancer forum on Facebook and the question posed was met with countless women who have had skin metastases from all over the world, including those with neck nodules. Holy crap. I quickly jumped off the internet for a bit as it is not the most reassuring place for someone who thinks they may have cancer.

Fortunately, for me, I have some of the best care in the world and despite the fact that my life flashed before my eyes while waiting for results, I got the call from the Big Man himself and heard the magical words every cancer survivor longs to hear: your tumor was non-cancerous. Phew. Phew. Phew.

Despite being six years out from treatment and feeling as healthy as I have been in a very long time, the journey through Cancerland is never quite done. Despite my risks of recurrence going down significantly after five years post-treatment, there is still a risk of recurrence of my disease. I will carry that with me for some time forward.

The thoughts that I am beyond my cancer were resurfaced last week and the feelings made me very vulnerable. Wait, I am the advocate now! I help mentor women through their breast cancer! I am sooooo done with my cancer.

Eff. I had a bit of a reality check last week. Any thoughts I had of moving on from the pink world were firmly re-implanted in my very core. Despite the fear and the vulnerability, I do hope that my experiences shared will alleviate the thoughts of another who is going through the same thing. In the meantime, I will press on and continue to make healthier choices for me and my family. There’s way too much life to live before it flashes before my eyes.

2014-10-21 13.22.21

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Life Isn’t Fair (A Parental Perspective)

Having a sixteen year old daughter who is very much like you is a strange conundrum. On one hand, the experience of parenting a child who looks like you, who acts like you, and who is really a better version of you is both exciting and rewarding. Yet, on the other hand, having a child so much like yourself is a bit scary as you wonder if she will make the same mistakes that you made. When you see her struggling with life’s obstacles and she seems to be handling the problems much like you would have at that age; but you want to guide her otherwise now that you are older and wiser. <Where is my Parenting 101 Guidebook when I need it?>

My sixteen year old is my first born, so whereas she has all the rights and privileges of being number one in our family (ask my son how he likes *that*), she also bears the burden of our intense parenting…okay, MY intense parenting, as I insist on raising children that will not only be successful people, but compassionate humans who will be highly functioning in the real world. <Yes, she may need therapy soon, as will my other two children.>

My oldest has experienced a challenging situation this fall, and instead of being a helicopter parent, I am *trying* to provide her with the coping skills she needs to handle the situation herself.   My words of support only take this strong girl so far.   Being the brave girl that she is, she has managed to instigate a conversation to find out how she could make the situation better. My sense of pride swelled as she described how she handled herself. Yet, the words returned to her were simply heartbreaking and offered no real explanation. Inasmuch as I could hear my motor revving and my instinctive desire to swoop in and find out more behind the lack of description behind the words provided to my hard-working girl, I had to refrain from being *that* parent. <@#8@&#^!@)*(!@#@!@#E*&$#@!!!!!!>

Life is not fair.  How do we find the ways to cope with *that* message?  You just do.

life is not fair

My gut tells me to continue talking to her, to encourage her to engage in dialogue again with the other party in this particular matter. Yet, my daughter’s eyes glazed over and she complacently agrees with my *strategy* to go get ‘em, killa! My need to use my twenty-four years of experience post-sixteen myself becomes compulsive and my talent of picking up on body language cues slides further down the slippery slope. <LISTEN TO ME, HONEY…..I was THIS girl twenty-four years ago and I now regret some of the choices I made or did not make!   LISTEN TO ME, PLEASE! >

<Hangs head…..knowing this girl is exactly a form of me and I need to back the eff off before I push her too far and away.>

Tuning in to my newly minted fourteen year old son I turn, hoping to find a few easier parental lessons here instead. My son and I are at a good place after a couple of tumultuous puberty-filled years. However, his newfound lady friends and his increasing interest in them have me more on high alert. Keeping the dialogue open with a teenaged boy is vastly different than communicating with my teenaged girl. Slowly, and painfully, my son is learning that the more he shares with me the less I am to keep inquiring. <Trolling: parents hovering, watching, stalking, leering, peeking, looking away for a moment, observing, and pulling out all points surveillance on all forms of social media to ensure your child is behaving in a manner that you deem appropriate. I am guilty as charged and holy Instagram, Batman!>

Continuing down the path of parental trials is my youngest girl, at six years old, who is so innocent and excited to be in school. The plethora of friends and social activities that she engages in frightens me; as much as I adore how social this particular child is, I fear that she may provide me with my biggest parenting obstacles as she grows. <Can a six year old be deemed a party girl, party animal, using her zest for life as an excuse to enjoy her world?!?>

Lately, I find myself conflicted with my personal rule of NOT picking my children’s friends. As my littlest girl shared every sordid detail of her school days (Maybe *that’s* why my son does not share much– he’s sandwiched between two sisters who tell me everything?!?), I started to worry about particular details of a classmate. Certain out of school behaviors lead me to believe that I am not comfortable with my child spending extra time with this child. How do I tell my precocious daughter that we are not okay with her being friends with so and so? Eek. We have simply talked about bad choices and that perhaps a good choice for my daughter is to limit time with those who continually decide to make bad choices. <Stay the EFF away from these kids, THIS KID, you are NOT to be friends with them. You will not EVER be allowed to spend time with them without my presence. Smile. Blink eyelashes. <Have this conversation in your head to yourself!> (Repeat. Repeat. Repeat.)

Life. Phew. Life is far from fair. As a parent, your instinct is to shelter and protect your wee ones from the garbage in life. We desire the world to be viewed from those rose-colored glasses. The older the kids get, the more you realize you cannot protect them from the tougher instances in their lives; but instead, you must equip them to someday go off into the vast world and survive themselves.

Life is not fair. My children have had more than their unfair share by watching me, their momma battle cancer and by losing their maternal grandparents at a young age. My *need* to protect them from the other inequitable aspects in life seems more profound than what you may find in a typical parent.

I do not want to watch my oldest struggle with the internal sadness she feels as she tries to understand her current challenge. Yet, I understand that she must handle this situation on her own and find her way. The best thing I have the ability to do right now for her is to offer her hugs and kisses. Unconditional love. If anything else in this world, my sixteen year old and her siblings will have parents, especially their momma, to offer them unlimited and unconditional love when their world may seem as if it is falling apart.

I have to trust that despite periods of pain or sadness in my children, they must make their own choices in their lives. My children will learn from each of their smart decisions, as well as learn from their respective mistakes. <Do as your mother says, NOT as your mother did!!!!> Each experience in their lives is simply yet another thread in the woven work of progress they are each individually, just as my experiences are my own and my decisions make me (or made me), uniquely me.

I am not proud of some of the decisions I made in my youth. Some of my decisions were downright poor and I was judged heavily for those poor choices. Yet, the lessons learned remain with me to the present day and offer me the ability to be a better parent to my own kiddos. (If I ever get lucky enough to finish my book, you may find out what some of these poor decisions were in detail. EEK.)

life is good

My children may learn that while life may certainly not be fair, the journey at times may be tough, but their lives are to be full of so much greatness. <Once you surpass the high school days, that is, children! Cackle!>

Repost from “Confessions  Of A Curvy Girl” on October 3, 2013

I do not hate pink. In fact, I find it to be a flattering color for me and the several shades of pink represent so much more for me in my life post-cancer.

I do hate the way pink is used. Pinkwashing. Have you heard of it? Tell me you have not walked into any box store in the month of October and you have not been drowned in pink as it is everywhere. Pink has been branded into a commercial enterprise of its own; namely for many corporations to jump on the breast cancer “awareness” bandwagon and ultimately, reap the benefits of its bottom line profit margin.
nfl pink

Debates abound with some die-harders telling me that a pink ribbon on their bucket of fried chicken does make them stop and think about their breast health for a moment.

kfc pink

Come on! <Insert my most dramatic, sarcastic eye-roll right here!>

Seriously, is it not infuriating that the pink ribbon – a symbol of a horrendous disease and a cause to “cure” the same – is somewhat misplaced on a bucket of obesity inducing fried chicken? How does that pink ribbon on a bag of cat food or cat litter help women with their breast health? Personally, I have seen the ribbon on everything from toilet paper, bubble wrap, Italian sausages, yogurts, duct tape, and countless other items of merchandise for sale.

We KNOW, we KNOW, we KNOW breast cancer exists.  Can we all safely say we are very AWARE that breast cancer is a profound problem currently today?  Um, yes.  Do not even get me started on “the cure”…..that is another blog post in and of itself.

Have you read the label to see how much of your “donation” by purchase of said item actually goes to the purported cause? Maybe ten percent, or maybe ten cents or maybe the disclaimer is as vague as “a portion of the proceeds from the purchase of this product goes to a breast cancer charity (or to breast cancer research).” Wait, what?

Where is YOUR money going?

Buying pink does not necessarily do anything for the hundreds of thousands battling breast cancer each year. In fact, many of the so-called pink items actually contain ingredients that may CAUSE cancer. Yay for a cure!

Come on! <Insert my most dramatic, sarcastic eye-roll right here!>

We CAN do better than this! We can, we can, we can!!!!

Let me tell you a little about breast cancer. Your brain will permanently etch the sound waves of your surgical oncologist calling you to tell you that you have cancer. You will hear that voice in your head for the remainder of your life. You will never, ever forget the dread, the fear, and the pit in the bottom of your innermost core knowing you have a disease that may possibly take your life.

Your eyes will never erase the image of a nurse donning all but a HazMat suit to come administer the insanely toxic and potent poison right….into…your veins. The fear of watching the gelatinous “Red Devil” (aka Adriamycin) arriving in the largest syringe you have ever laid eyes on (bigger than a turkey baster, people) being slowing pushed into the IV port and the feeling of the cool toxic substance surge into your body is similar to what you envision being tortured may be like. You will also panic at the sight of a technician coming in with a metal lockbox containing the radioactive isotopes they inject INTO YOU. Anything that must be under lock and key in a protective safe and deemed *radioactive* (I think Chernobyl if you will), must not be thrust into your bloodstream. Oh, yes, it does.

Despite drinking gallons of liquids to counter the effects of the noxious chemicals soaring through your system, you will not forget the feeling of not being able to poop. That is right. You insist to yourself that what goes in MUST come out. However, trying to poop on chemotherapy is nearly impossible. You actually consider an emergency room visit because it….just…..will…..not……come…..out. You cry.

Your breasts will never be the same. Ever. Not only will you show hundreds of different people your boobies on a daily basis, you will not be able to pull off the name Misty Rain and get tips in your thong for displaying these beautiful mounds. Oh, did I mention that about ninety-five percent of these people who gawk at your boobs will also touch them. Yup. Men and women. Young, middle-aged, and old. You cannot help but wonder how many boobs they touch every day in their professional lives. Seriously, your mind goes there.

Your armpit will be scarred and lymph nodes taken for good. Your breasts may be one or all of the following: scarred, misshapen, lopsided, tattooed, puckered, dimply, discolored, numb, plastic, radiation-induced firm, mis-matched nippled, lumpy, filled with scar tissue or fatty necrosis or even reconstructed from tissue from somewhere else on your body. Your emotional outlook on how your feminine breasts are now far from how you were made naturally may take a huge hit causing you to hide your breasts from your husband or not want to date for fear of disgusting them.

The bone pain from the other poison, called Taxol, will make you contemplate suicide. Take the pain of childbirth and delivery but maximize that by 1000% and pretend you are getting run over by a gigantic Mack truck crushing all of your bones slowly. You will ponder if death is a more palatable alternative.

You will have countless side effects long after the treatment has commenced and your support teams have dispersed. The emotions shift daily and as if on a roller coaster in the Marianas Trench. The residual bone and joint pain makes you shuffle like a ninety year old. The phantom striking pains in all of your surgical sites. The fog brain. Yes, you will not remember anything like you used to. Words you know will be stuck…..somewhere…..as you try to complete your sentences.

Welcome, my friends, this….is……PINK.

In an effort, myself, to do better about the world of pink and to make the lives of my fellow cancer counterparts more comfortable, I had to find a way to ensure that change was being made. I could not ask people for donations to support pink and not be able to tell them where their money was truly going. With a passionate cancer advocate who has bulldozed change herself, we founded PINK Revolution Breast Cancer Alliance. Our mission was to ensure that monies that come into our pink world actually go right back out in its entirety (yes, 100% of those monies – no skimmed fat executive salaries of these so-called NON-PROFITS; no operating expenses to cover extravagant five star hotel functions to “rally the troops”; no cents of the dollars actually coming back to the ultimate cause) to help patients you may very well know yourself.

How can a woman try to fight for her life when she has no disability insurance and cannot work because of the aforementioned “side-effects” of chemotherapy and surgeries; and the assistance she is given through our local social programs is $27/month in food stamps? Oh sure, what little she will try to eat given the projectile vomiting and constant nausea may amount to $27/month.

Come on! <Insert my most dramatic, sarcastic eye-roll right here!>

Our world has become a fast and furiously paced place to live. However, we are all humans and we all have the capacity to love one another and to help one another. Let us bring back the human touch. Let us take a moment from our busy lives to care for each other. It truly does take a village, so let us bring that back.

Donations are immensely helpful and help PINK Revolution fund a number of necessities – from local research at UMass Memorial Medical School Research, to leading edge technology (one of five in the world sophisticated tomosynthesis (3D) machines for betting diagnostic imaging) at UMass Memorial Comprehensive Breast Center, (yes, that’s me on their page),  to improved patient care and funding for items such as wigs, lymphedema sleeves, prosthetics and so much more.

Make your pink dollars count. Know with confidence that your donation is making a huge difference in the life of a very real breast cancer warrior. If you cannot make a donation, there are endless other ways to pay it forward: make a meal for a family going through cancer treatment, give a patient a ride to their chemotherapy, mow their lawn, rake their leaves, watch their young children, clean their house and set the ripple of pervasive change in place for our future generations.  If all else fails, ask me – I will certainly help align you in an opportunity that will allow you to feel even better than buying that pink yogurt.

Let us all be passionately pink.

Let us all be the start of pervasive change.

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