Early Detection Saves Lives

I have a confession to make.

For many years, I thought "Breast Cancer Awareness Month" to be... somewhat redundant. Is there anyone out there who doesn't know breast cancer doesn't exist? Do we need to tell more people about it every year? What about childhood cancer? What about all the other underfunded and under researched cancers that don't get any national recognition whatsoever?

.Almost 2 years ago, that opinion would be quickly and radically challenged.

October 2016

Life was pretty normal in the days and weeks leading up to October 31, 2016. My Mom was due for her annual mammogram, but her primary care doctor reassured her that it wasn't really necessary according to the new guidelines ; she was a low risk patient, being that she was young and had no family history of breast cancer at all. She had already had many annual mammograms and all of them had been perfectly normal. "Technically" the guidelines called for only biennial mammograms. But because her insurance still covers an annual mammogram, my mom thought "I might as well...."That split second decision and that appointment Halloween day would soon change the course of our lives forever.You see, that year's mammogram was the very first one to be far from normal.

Late November: the biopsy

After a suspicious looking mammogram and a follow up to primary care, a biopsy was scheduled for the end of November. The biopsy later confirmed what no person wants to hear: cancer. Invasive Ductal Carcinoma.

December: initial consultations 

Originally, the recommendations were all encouraging. At her first appointment with the surgeon, my mom was reassured that the tumor was small and that there was no immediate rush to start treatment. He assured her that this was common, that her case was nothing special, and was fairly certain that she would be able to be "cured" with just surgery and maybe some radiation treatments, too. With this information in hand, and knowing that my sister's wedding was just 2 short months away, my Mom opted to schedule her surgery for just after the new year, postponing treatment in order to be fully available to our family during the Christmas and wedding celebrations. She was able to celebrate Christmas at home with all 3 of her kids, 2 in laws, and a beautiful Grandbaby. Just 5 days later she was overjoyed as she watched my sister marry the man of her dreams.

January 9: surgery 

Before we knew it, the joyous celebrations were over and it was time to tackle this beast head on. It was officially surgery day. Everything went as planned, thank God, and in just a few hours my Mom was on her way home to rest and recover. Technically, on this day, the cancer was gone.

Late January: test results

After what felt like an excruciating wait, pathology reports were in and it was time to meet with Oncology. The margins were clear, and thankfully so were the lymph nodes. But this is what none of us expected - yes, this tumor was indeed small, but it was a beast. In fact, the tumor was characterized by pathology as a Grade 3 (high grade) - the most aggressive a breast tumor can get. 

February: more tests; more waiting

Because of the grade 3 distinction, the oncology team was no longer convinced that radiation would be my mom's only upcoming battle. The beginning of February was full of waiting and wondering as the tumor was sent off for additional testing. More information was needed to determine what the next few months would entail. Of utmost importance - HER2 testing and Oncotype DX - which would indicate her specific risk of recurrence (or the chance that her cancer would come back). This in turn would help my mom and her medical team determine if chemo was indicated. Because even though technically the cancer was removed and gone, she still had the next 40 years to plan for.In general, an oncotype "score" of anything less than 18 indicates low risk and means that chemo is not likely to be a helpful part of post-surgical treatment. A score between 19-30 is more of a "grey area" - there's no strong research to support that patients who fall in this area will reap noticeable differences in their prognosis with or without chemo. A score of 30 or higher means that the risk of recurrence is HIGH, and the benefits from chemo are likely to outweigh the risks and side effects.During this time, it felt like every day was 100 hours long - just waiting for the phone to ring and praying every day that the results would bear some good news. During this time, I prayed relentlessly for a low score. I begged God. I asked all of my friends to join me in boldly praying for a number lower than 10. I had never in my life wanted such a specific answer to prayer. Less than 10, please, just be less than 10.In the meantime, my Mom met with a radiation oncologist to discuss her options for radiation. There were 2 options presented: Traditional external beam radiation, which would last for 7 weeks, or Brachytherapy, in which radiactive pellets are sent directly to the cancerous site. While this requires two visits per day - radiation is complete after just 5 days. Thankfully, an ultrasound showed that my Mom was in fact a candidate for brachytherapy. One piece of good news....Finally, after many delays, the genomic testing was completed and the results were in.Her2: positive.Oncotype: 28.GULP. Technically, we were within the 'grey area' but just barely....I still remember the phone call from my parents. I remember the way my heart pounded and my mouth went dry. They didn't even mention the number at first, just that there were no more decisions to be made. My Mom's mind was made up as she announced the bravest decision she'd hopefully ever have to make: Chemo was officially a go.

Late Feruary: radiation

Finally, towards the end of February, it was time for radiation to begin. Unfortunately, contrary to our initial hopes, it was no longer the only treatment that loomed ahead. Radiation came and went quickly with no complications (other than the fact I got in a serious car accident on my way to pick up my mom and take her to the cancer center. seriously, God?!) My mom was required to be at the radiation clinic twice a day and live with a device implanted in her breast, which of course is no small feat, but at the end of the week, she was DONE. Radiation: CHECK.On to chemo.

March - May : Chemo

First came an overwhelming meeting with a chemo educator and plotting out all that would be required over the next few months: pre-chemo labratory tests to check blood counts, twice daily temperature checks to monitor for fevers, post-chemo Neulasta injections, multiple 5-day oral steroid courses, at home nausea medications (to be taken on a strict schedule), and of course the actual chemo infusions themselves. The packet of necessary precautions we were given felt thick enough to be its own dictionary. For starters: no fresh flowers. no fruits and vegetables. no contact whatsoever with sick people. no leaving the house at all during "low count" days. limited visitors at all times. No traveling. And the list goes on.....Required education: completed.Prescriptions: filled.Daily checklist: made and color coordinated.Chemo infusion appointments: scheduled.It was time for the first round of chemo.I have to say - I will always be incredibly proud and amazed at the way my mom marched into that cancer center on that day and voluntarily received her first dose of IV chemo. It wasn't "required". The days leading up to this, she felt perfect. She had no symptoms. The surgery had indeed made her "cancer free". But chemo? It came with more side effects and scary realities than she probably even realized. She knew she was in for a rough couple of months. She knew how sick she might get, and how much of her freedom she was giving up. But I will always remember the words she said to me with tears in her eyes when I asked her if she was sure."I plan to be there at your wedding, Sarah. I want to hold your babies. I want to play with my grandkids. I'm going to do this"All things considered, my mom's journey through chemo was relatively uncomplicated. Aside from one terrible bout of chemo-induced colitis, a necessary change of chemo dosing, and a few fever scares leading to prolonged Emergency Room visits, chemo came and went without any major complications. Fatigue and hair loss were her most prominent side effects, and luckily the at-home nausea medications did their job.

Fast forward to October 2018: remission

It has been almost exactly 2 years to the day since my Mom went in for that "optional" mammogram. In those two years, in addition to every day life, my mom has attended and enjoyed her daughter's wedding. She has been there for 2 Christmas mornings. She has shared countless laughs with her granddaughter. She has supported a daughter through pregnancy and helped her navigate life with a newborn. She has supported me through a career change and helped me navigate my own chronic illness. She has been there for all of us, in ways I can't even describe.Looking at all of this in retrospect, it is so easy to see how drastically different this experience could have been. I get tears in my eyes every single time I think about what might have happened if my mom waited until the next October to go in for a mammogram; and because of this, I now know how important awareness is, and I am here today to tell you shout from the rooftops that

Early detection saves lives.

Even after the mammogram, knowing exactly where the tumor was, none of my mom's doctors could feel it from the outside. It hadn't grown large enough or spread far enough to cause any noticeable symptoms or pain. A self exam would have never discovered the tumor until it was far larger. An abnormal mammogram reading was the one and ONLY thing that led to her early diagnosis and treatment - and, in my honest opinion, it is the one thing that saved her life.

Early detection saves lives.

"Check your bumps for lumps". "Feel them on the first". Remind a friend to do the same. See your doctor regularly. Get an annual mammogram after age 40 - no matter how much you dread that appointment. I know that my mom was reluctant to get that mammogram 2 Octobers ago. But I sure am glad she's here to tell me about it.I'd be lying if I said I'd completely left this ordeal behind us. I'd be lying if I said I wasn't still scared. Because while her initial breast cancer is defeated, i'm haunted by the fact that it is actually the recurrence of breast cancer which is responsible for most deaths from the disease. In the meantime, I thank God for every day that we get to enjoy together. I thank my Mom for selflessly getting that mammogram; for choosing to battle through chemo so she could be there for us. I pray constantly that recurrence is not a part of our story. And I pray that somehow God can use our story to raise awareness for early detection, and ultimately to bring glory to His name.

Early detection saves lives. 

"Save the tatas"?... Sure. But more importantly, lets fight to save the mothers. the wives. the sisters, daughters, coworkers, friends, and strangers. Because for what felt like an eternity but was really only a brief time, I genuinely feared that I would lose my mom to this terrible beast. And I hope someday no daughter ever has to know that feeling.Never. Again.

Heroes come in all sizes - and I've met some of mine

September is Childhood Cancer Awareness month."Awareness": (noun) knowledge or perception of a situation or fact; concern about and well-informed interest in a particular situation or development.

As a child life specialist, you could say I’m quite “aware” of childhood cancers and the implications that come with such a diagnosis.

For starters, I know the difference between ALL and AML, in terms of diagnosis and prognosis. I know the survival rates of stage 4 neuroblastoma (far, far too low). I know what a pediatric bone marrow transplant entails (for both the donor and recipient) and know the strict precautions that must be taken and the harsh realities that come with such intense treatment. I know that there is no cure for DIPG (literally a 0% survival rate) and that most DIPG patients will die a painful, progressive death (often within just months of diagnosis). I know that about 43 children will be diagnosed with cancer in the United States EVERY.SINGLE.DAY.  I know that only 4% of the national cancer society's funding each year will be allocated to childhood cancer research, even though cancer is the number 1 cause of death by disease and even though 2/3 of childhood cancer survivors have to live with severe long term effects of their treatment (including infertility, hearing and vision loss, and secondary cancers).So yeah, the basic data, I know. The percentages and dollar signs are permanently worn into my brain. But beyond that, what is it that makes me really "aware"? That makes me so passionate about shouting this message from the rooftops and spreading awareness everywhere I go?

The truth is, there are things I know that haunt me and affect me far more intensely than just the striking statistics.

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I know the look on a mother’s face at the exact moment in time when she is told her child has cancer after a "routine" ER visit for a sore throat; the exact moment when the world as she knows it ceases to exist.“But he was fine just last week....." 

I know the types of questions she will ask me when the doctor quietly leaves the exam room and she is left to process this information.I know the general ways in which I will respond, the words I will desperately grasp for in an attempt to comfort her - all the while knowing full well no words, no actions, nothing can ease the type of pain she is currently experiencing.

I know the feeling that will come over me as I choke back my own tears, the tightness in my chest that I will feel while sitting in silence with my hand on her shoulder.I know the types of questions his siblings will ask when they are told he has cancer."Is he going to die?"

I know the look of panic spread evenly across an entire extended family's faces while they sit in the waiting room, wondering if the surgery will be successful.I know the look of doubt and paralyzing disbelief on a mother's face as she signs a DNR/DNI form for her young school age child, who was healthy and playing soccer just months before.“How is this happening? I can’t believe this is happening. This. Isn’t. Happening."

I know the way that tears stream freely and quickly down a teenagers face as she notices the first evidence of hair loss left behind on her pillow.“I just didn’t think it would happen this soon...”

I know the confusion and guilt that comes when a child learns their best friend from just down the hall has died - and their standing playroom date has suddenly come to a screeching halt.“Does this mean I'm going to die too?”

I know the look of understanding and camaraderie that weary family members give each other as they cross paths in the hallway - an entire empathetic exchange in just one glance.I know the disappointment on a patient's face when they learn their counts are still low- meaning they can't leave the confines of their tiny hospital room - not even to go into the hallway.

I know the look of shock on a mother's face as she walks out of the ICU and watches tearfully as the elevator doors close behind her- for the very last time.I know the piercing sound of a mother's wails from down the hall when she is told that her child's cancer has returned once again."I’m so sorry, we've done everything we can....."

I know how deeply and painfully a child's death can affect all the hospital staff who knew and loved her.“I still can’t believe she’s gone....”

I know the way that my own stomach will tie in knots every time I see something or hear something that reminds me of one of my patients who wasn't lucky enough to survive"that was her favorite show; his favorite song; she would have loved this...."

I know what it feels like to return from a week off of work only to find an invitation to a familiar patient's funeral hung prominently at the nurse's station"I wish I could have seen this one coming..."

I know how my heart will ache, forever longing to be able to do something more for those family members and forever wondering what their future will hold.

Most of all, I know that childhood cancer is never something that is left in the past - it stays with those who have been touched by it, those who have had their life completely and utterly changed by it - forever.

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But, I also know the look of victory and pride as a young patient makes it to the playroom for the first time in months without using their wheelchair."I DID IT!!!!!"

I know the confident, brave, courageous look on a patients face as they are wheeled into the OR for an extensive and risky debulking surgery.“It’s okay mom, God is in control now...”

I know the look of pure joy on the teen patient's face as she dances the night away at hospital prom with all of her best friends, finally cancer free after years of treatment."Oh, don't you dare look backJust keep your eyes on meI said, “You're holding back”She said, “Shut up and dance with me”This woman is my destinyShe said “Oooooh, shut up and dance with me"

I know the look on a fierce Mama Bear's face as she fights for better treatment for her child.I know the way a child calmly reassures a peer who is about to undergo a similar scary procedure.I know the look of appreciation on a tired mother's face when an anonymous donor has a hot meal delivered right to her hospital room.“I just wish I could tell them thank you...I haven't had a home cooked meal in months”

I know the sigh of relief and the reluctant smiles that come when the scan results finally come back NED: no evidence of disease.I know the contagious giggles that sneak out and can be heard down the hall as we have a Taylor Swift dance party together, briefly forgetting we are in a hospital at all.Most of all, I know that childhood cancer warriors and their families are among the most noble, brave, intelligent, and heroic humans in all of the world.

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As much as I might wish I had never felt the pain of seeing a child die from cancer, felt the heartache of seeing a family torn apart by such invasive treatment, I would go through every single moment - the good, the bad, and the terrible- all over again just to witness the incredible strength, courage, and bravery firsthand. Not many people can say that they were lucky enough to be a part of such intimate moments. And I'm proud to say that I have.Don't get me wrong - it hasn't always been graceful. I have cried in the nurses station, the playroom, the bathroom, my car, and in the back row at church more times than I can count. I have pleaded with God to show me a medical miracle in the kids standing right in front of me. I have spent late nights lying awake begging Him to spare families that I care about from the ultimate heartbreak - the ultimate nightmare. I feel all of these things more deeply than I ever imagined possible.The truth is this: I may from time to time call myself the "hospital teacher", but I have learned more from these kids and their families than I could ever have taught them - important things like confidence, courage, forgiveness, bravery, patience, perseverance, trust, optimism, friendship, loyalty, faith, and so much freaking LOVE.

For all the incredibly brave survivors I've met that I can never mention or thank by name, for all the precious stories I can't share or the details I cannot divulge : someday this will be YOUR story to tell, and I hope and pray your brave voice is heard by the entire world - because I, for one, know how much better and stronger and more full of love a person's soul can be after they've been touched by your life, strong one. I can't wait to see you soar.A special thank you to the families who have graciously trusted me to be a part of your personal journey, whether it was for an hour or over the course of a whole year. I am thankful to you in ways I’ll never be able to describe, and I admire your strength more than you’ll ever know.

And of course, in honor of every single brave childhood cancer warrior I have met, and all the others I haven't been lucky enough to cross paths with: you are my heroes, plain and simple. I promise to always be your loyal advocate, to be a voice on your behalf, and to never, ever give up on fighting for YOU.

Because you, my loves, are worth SO much #morethan4.