Category: Beachcombing My Way through Breast Cancer

Finding beautiful treasures even along the rocky shores of this ugly disease

The Swollen Truth about Lymphedema

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Uncategorized

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Lymph–what?

Before I personally became affected by its dreadful presence post-cancer treatment, I simply joined the rest of society’s collective yawn in not really concerning myself or knowing much about lymphedema at all. In fact, here we are at the end of March and until a mere 24 hours ago, I had no clue that March was Lymphedema awareness month. Who knew?

So what exactly is it?

This seldom talked about, yet debilitating condition known as lymphedema, means that your lymph vessels are unable to adequately drain lymph fluid—typically from an arm or leg—causing edema or swelling to develop. This blockage of the lymphatic system can be either primary (occurring on its own) or secondary (caused by another disease or condition). Secondary is far more common than primary lymphedema. In fact, one in five individuals who receive conventional breast cancer treatment will be affected by Lymphedema at some point in their life post-treatment. That 20% statistic can sharply increase (even as high as 70%) if any of the following were part of the treatment:

  • Full axillary lymph node dissection (removal of lymph nodes above, below, and under the pectoralis minor muscle—known as levels I-III)
  • Radiation to the lymph node areas after lymph node surgery
  • Extensive cancer in the lymph nodes
  • Chemotherapy
  • Mastectomy rather than lumpectomy

So for me that would be:  check…check…check…check…and CHECK.

Now, if I’ve been consistent with anything on this journey, cancer has surely put me on the path of consistently landing in the bad side effects’ category breast cancer treatment can often induce and even the bad side effects to those side effects.

So lymphedema has joined my world. Permanently.

Now What?

When you’re in the warzone of cancer treatment, your sole focus is simply—getting through it. What happens on the other end of treatment is an entirely new battle, one with less direction.

About six weeks after my bilateral mastectomy, I noticed what appeared to be ropes forming under the skin, extending from the armpit where my lymph nodes were removed down my arm to the wrist. At my next surgical oncology appointment, I talked about the pain and reduction in movement in that arm, and after examining it she told me it was “cording.”

Cording? Apparently axillary web syndrome (AWS) or “cording” is a common sequelae of breast cancer surgeries, especially those involving axillary node dissection with mastectomy. The general school of thought is that trauma from surgery causes a hardening of the connective tissue, which causes those tight cords to form. While there is still a lot of mystery surrounding its occurrence, when you are affected by those thick rope-like strands visible under the skin—you painfully know it.

For me as with many others, post-mastectomy cording was the foreshadowing of lymphedema to come.

It wasn’t long after 35 rounds of radiation to my chest and remaining lymph nodes, that I began noticing pain and weakness in that arm. It was subtle at first, my arm feeling sore and tight, until it progressed to…me catching a football on the field, leaving an indent so deep on my small arm that you could practically see through to the other side. This is what doctors and nurses would refer to as a +4 on the pitting edema scale—very deep indentation lasting for over 15 minutes.

Throughout my entire course of active and hormonal cancer treatment, lymphedema was certainly not the first side effect to rear its ugly head. In fact, when all of my finger- and toe-nails began oozing with infection before lifting off from the poisonous chemo cocktails I was taking, I might have even prayed “anything but THIS side effect.” But the difference between that temporary side effect and lymphedema…is just that. Lymphedema stays for the long haul. Nails grow back and heal. Lymphedema lives on. And with that you must learn the most effective ways to live on with its ugly presence. So I found ways to help reduce the swelling and discomfort. How?

  • Physical therapy. Here I learned ways to help retrain the lymphatic system to recirculate waste to other lymph node areas in the body through self-massage;
  • Compression sleeve. I got fitted for a sleeve, and though it feels constricting, it helps ease the discomfort of pain while encouraging the lymph flow to not get blocked;
  • Exercise plan. Under the discretion of your lymphedema specialist, a regular regimen of stretching and range-of-motion exercises can help strengthen the lymphatic system; and,
  • Lifestyle changes. I’ve had to mindfully change the way I would once mindlessly use my affected arm. For instance, not carrying heavy items in that arm (groceries, handbags, etc.), trying to avoid trauma to the arm, and vigilance in keeping my hands gloved when cleaning to reduce infection/irritation.

These approaches are not the magic cure, but have certainly been beneficial in my case. Other, more advanced treatment options are also available for those with more severe cases of lymphedema.

Side Effects to Side Effects? Really?

russian-nesting-dolls

I’ve always loved Russian nesting dolls. As a child, I would line those beautifully painted little wooden figures up, mother matriarch all the way down to the itsy-bitsiest solid figure, sometimes seeming to go on endlessly. Breast cancer for me has been the mama matriarch in what seems to be an endless set of Russian nesting dolls. The big C has given birth to a multitude of so many other “surprises” on this unchartered journey—lymphedema being one.

Sadly, I would love to say it was that final itsy bitsy solid figure to add to this proverbial nesting-doll-lineup, but of course, that would be somewhat boring…and Lord knows this journey has been anything but dull.

Having lymphedema as a side effect to cancer treatment means as a result, you are likely to face new, more serious side effects and challenges. For me those challenges have come in the form of infections. Complications from these infections can ultimately result in amputation of the affected limb or even death.

Last fall, I woke to what appeared to be a very red, swollen, extremely sore arm and my index finger (where I had pulled a painful hangnail from the night before), was also swollen. My first thought was, maybe I slept on it funny. So I took some ibuprofen and started my morning routine. I remember brushing my teeth thinking, why do I feel so weak this morning? Even though the pain and redness continued to worsen and spread, I realized I had no time to be whining, because my workday schedule was jam-packed and I certainly couldn’t afford to stay home sick.

By the time I reached my office, I collapsed on the floor.

A colleague rushed me to the local emergency room. My heart was beating out of my chest, my teeth were chattering with the chills, and my breathing was extremely rapid. After blood tests confirmed I had sepsis (and clearly going downhill), they rushed me via ambulance to Boston. That became my home for some days, infection reaching my lungs, around-the-clock contemplation of amputating my arm and pretty much my life falling apart.

But here I am, praise God—alive and well.

Sepsis is a systemic extreme inflammatory response to an infection that has spread throughout the blood and tissues. The extremely low blood pressure that often comes with sepsis limits blood flow to the body and can often result in organ failure and death.

As a cancer patient and more significantly…a lymphedema patient, I am more susceptible to these infections because my body is immunocompromised, and because of the weakened lymphatics, my affected arm is considered immunodeficient.

Sidebar: I urge everyone who has lymphedema to be under the care of an infectious disease doctor. These physicians are specially-trained in the recognition, treatment and prevention of infections. Mine has literally kept me in the palm of his hand, and I would hate to not have him as an emergency contact in my phone.

By me pulling a hangnail the night before, not only caused trauma to my affected arm, but it was the very tiny opening that allowed strep bacteria to enter the skin. That’s all it took to put me on death’s doorstep.

Suffering in Silence

Overall, oncology as a medical profession has all too often instilled in patients the idea that there are worse things than some of these silly side effects, including lymphedema, and the only real noble approach to deal with it is to stop complaining and suffer as quietly as possible. Who wants to do that? Because remember, lymphedema has moved in permanently.

Be proactive. Much of my knowledge surrounding lymphedema has been through my own self-education and talking to others dealing with it.

Suffering in silence results in one thing and one thing only—continuing to bask in society’s collective yawn. Change only comes when we demand it. Change only comes when groups coalesce around a compelling cause and systematically advance their agenda in every forum imaginable.

Breast cancer–related lymphedema is a real concern in the breast cancer community and though it’s been difficult to quantify due to both the delayed onset of symptoms and the lack of standardized diagnostic criteria, there is a need for more awareness and education. Be the voice for demanding more support.

One encouraging message about lymphedema is that effective management and skilled experts are available to help you. However, until there’s a collective voice drawing much needed attention to this condition, it is our responsibility to educate ourselves and ask questions along the way. It is our responsibility to get informed and share that information to help others along their, often debilitating journey.

Lymphedema Resources

Books:

Lymphedema: Understanding and Managing Lymphedema after Cancer Treatment by the American Cancer Society (American Cancer Society, 2006)

100 Questions & Answers about Lymphedema by Saskia R. J. Thiadens, Paula J. Stewart, and Nicole L. Stout (Jones & Bartlett, 2009)

Websites:

National Lymphedema Network, lymphnet.org

National Cancer Institute, cancer.gov

The Doors In Between

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Home, Inspiring the Senses

Door to Nowhere

There are things known and things unknown and in between are the doors.

Jim Morrison

After visiting the Greek islands, not only did I walk away with a deeper appreciation for the architecture—amazingly beautiful structures that all spoke of bygone eras—but somewhere among the thousands of incredible little cobblestone alleyways and whitewashed streets, I got caught up obsessing over the doors.  The mystery and allure of the rustic and charmingly seductive doors in Santorini are in many ways akin to passageways within our own lives—some invitations to great, even sheltered opportunity, while others yet signifying isolated imprisonment, an escape, or even bitter closure. To me all doors seem to speak of the powerful knowns and unknowns encountered in life—perhaps the very reason why I’m so intrigued by them.

Recently, when asked why I haven’t written a post in some time, I realized I couldn’t really blame my hiatus on a lack of inspiration.  After all, I earnestly recognize the daily miracles all around me, including the abundant joy that my three amazing boys deliver—all opportunities to ignite a spark of inspiration to flow on paper.  Instead, I think the heaviness on my heart these last months has been the source of the ink drying in my pen.  As many of you within the breast cancer social media community know, we’ve recently seen several women reach new passageways in the realm of cancer.  While some have opened doors to the unknown dreaded territory of metastatic disease (stage IV), others in the community are at the end of treatment options and have entered the doors of hospice care in preparation.  Saddest still, are the beautiful young women who recently closed their final doors on cancer and are now journeying beyond this world, leaving loved ones gripped with grief behind.  As Jada so beautifully wrote one day before her untimely death at age 36:  “Y se me va la vida….and my life goes away….”

Every three seconds in the US, someone is diagnosed with breast cancer.  All of these people share at least one common thread that ties them together—they are a statistic.  Regardless of stage at diagnosis, we all walk through the unknown door of breast cancer with a 30% chance of going on to develop incurable metastatic disease.  Now I know statistics may seem mundane, but when you’ve been touched by cancer, those numbers are painfully real.  As a “statistic,” I have a vested interest in educating myself and others about this terminal disease and urging people to support research that helps those with advanced breast cancer live longer.  So though the town may be painted pink every October and beyond, and while some in the world perceive breast cancer to be the “good” one, the richly funded one, or even the easy one—the somber reality is that in the US alone this year, we will see an estimated 40,000 deaths from breast cancer.  Yes, that’s one woman every 13 seconds—gone.  So it’s safe to say that though I’m grateful for heightened breast cancer awareness that has come from pink campaigning, this disease is not good—in fact, just like every cancer, it sucks.  As the second leading cause of cancer death in women behind lung cancer, breast cancer is a fierce adversary on the cancer brigade.

Going through photos of my visit to the pearl of the Mediterranean—as Santorini is so deservedly known—awakened that odyssey of cherished memories that live in my heart … memories all scattered in between the doors-galore.  Everywhere stood phenomenal, colorful doors:  doors within doors, doors with seemingly no purpose at all, and my favorite by far, those charming and dreamy “doors to nowhere.”  I get goosebumps thinking about them.  My obsession with these doors was in large part because they were like an unlimited gateway into my imagination, allowing me to see what my mind’s eye envisioned to be on the other side.

My prayer is to find my door to nowhere on this walk, one where my eyes will be fixed on the Lord and my trust in His plan and purpose for my life regardless of what lies before me.  On December 26, 2012, I was evicted from life as I knew it and had to close the door to my pre-cancer existence.  You realize fairly quickly entering this brave new world that you’re forever changed, always wondering where this narrow passageway will lead, one where you feel like one inch in any direction—the walls on either side will come crashing down around you.   In fact, it’s often hard to talk about those feelings, because it’s easy to feel guilty while there are countless other women who have current goals—like seeing their children graduate from High School or even Kindergarten. These women with incurable metastatic disease are part of the 30% to enter Stage IV or advanced breast cancer, and though some will live in treatment for some time, the reality is when you are stage IV, you will die from or with breast cancer.

Occasionally in my circle of close friends and family, I’ll get the question:  “Why you, Nicole?”  Without thought, my answer has always been “Why not me?”  I am no different than the other 10 million cancer “survivors” in this country all going about our lives with a slight pause in our walks, wondering if the cancer is only hiding behind the next door.   As a woman of Faith, however I try—instead of pausing to stop and thank God for being there, for holding my hand on the journey and seeing me through every step of the way.  It’s easier to rest in hope under the umbrella of prayer and thankfulness.  As I once read:  “Those blessings are sweetest that are won with prayer and worn with thanks.”

In love … and hope …

Nicole

I am the door. If anyone enters by me, he will be saved and will go in and out and find pasture.

John 10:9

Sailing Strong in the Winds of Affliction

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Raising Princes in a Pauper Society, Uncategorized

Adversity is the diamond dust Heaven polishes its jewels with.

Thomas Carlyle 

On the tender heels of Thanksgiving, my 11-year old, Colby asked to share a bit of his heart from this past year.  I’m overwhelmed posting this … but it’s wonderful to see my 3 beautiful boys holding on and pressing in to the gift of Faith that they have eagerly unwrapped.  I am blessed.

A Year of Cancer through the Eyes of a Child

Colby

Thanksgiving was a really good time for me to look back on my life, including the rocky road of the last year and find all of the blessings that abound.  I truly thank God for my life, my health and SO much more … my family, house, food in my stomach, a free country, my Mom’s health, my education, and the very air I breathe.  I realize that sometimes God throws tough times (tests) at you.   In order to get an A+ on each test, you must remain faithful to Him, and never give up.  Even though this was a struggling time in our family we never gave up on Mom, or God.

So the big test, the journey we never expected to take was this past year.  The test has been the most difficult one I’ve taken so far in my 11 years.  On December 26, 2012 my Mom and Dad called my brothers and me into their room.  As they told us that the call came and a stage III breast cancer diagnosis was confirmed—I felt a sudden pain in my gut.   At that moment I knew it was serious … this was really happening.   My parents were open and honest about everything they knew, and that alone helped to make us feel safe.  Though I know people who have gone through cancer, it’s hard to imagine it happening to my Mom.  It was very hard to believe, and though at first I didn’t want to, I knew that I had to face reality and trust God to take the wheel.

Before that dreaded day, we knew “cancer” was definitely a possibility.  But regardless of that thought lurking days before Christmas, my parents made everything as normal as possible and full of love.  They still showed us the wonder and generosity of the season in the face of such upsetting news.  Shortly after diagnosis, the next challenge was learning that chemotherapy treatment would be the first thing my Mom would experience.  My parents helped to explain chemotherapy and the side effects that would likely happen.  It helped me to know that if and when Mom was sick, it was not because the disease was making her sick, but instead because the medication was attacking the cancer cells with the intent to make her better.

My Mom was strong and worked through treatment.   Every Thursday for 20 weeks starting in January, she would go into Dana-Farber Cancer Institute. Though I was not able to go with her every week, my Mom made special arrangements to be sure we went with her at least a few times.   I think my mom wanted my brothers and I to see that chemotherapy wasn’t scary.  The first time I went to Dana-Farber I was a bit nervous, thinking it would be creepy with a lot of very sick people there.  It didn’t take long to learn that my fears were far from the real thing.  Though difficult for the patients experiencing chemo, the people and atmosphere were both warm and welcoming.

Chemo was still sometimes scary for my brothers and me.  It’s awful when you want so much to take away someone’s pain but can’t.  During this time I tried to help in every way possible throughout the house.  Since mom was getting weaker after many treatments, her ability to do all the things she used to do in the house decreased.  I tried to spend time after school doing some simple cleanup and chores around the house.  It felt good to give back to her, especially when she was tired and struggling with a serious illness.  I hated seeing her sick and really loved making her happy. I knew that as tough as chemo was, it was made to help stop the cancer in its tracks.

When my Mom started to lose her hair during chemotherapy, as a family, we gathered and made a family time to shave her head.  I know it was hard for her to lose her beautiful hair, but we helped to lighten the mood with a little “buzz” party.

Chemo was a very difficult time, but we got through it as a family.

Things moved fast.  After Chemo was finally over, Mom was trying to get strong for surgery.  The goal of surgery was to remove any remaining cancer out of her body.   I was very scared for her. Every night I prayed, and prayed that she would be fine. The day of surgery finally came (actually on my younger brother, Logan’s birthday).  My Mom was a brave person on that day.  She was in the hospital for 5 days and we missed her so much.  My grandparents watched us and helped prepare for Mom coming home.  Before she arrived, we made her a big “WELCOME HOME!” sign.   She lit up seeing that and it made us so happy!  When she got home, things were tough for a while.  She was always very sleepy and never felt good.   But, The Lord is good.  He kept her safe through all of this.

Radiation treatment came next.  Mom was a little anxious at first, but then she learned that it wouldn’t be as bad as the other treatments.  I was so thankful that she had gotten through the treatments before. Through the house, all of us were asking questions like “Doesn’t radiation give you cancer?” and “Won’t you get burned?” All of the questions were answered, and we weren’t as anxious as before. The family got together and prayed that mom would get through the last treatment. Mom did get some burns, but she took it in stride … nothing too bad.

I love that my parents have been honest with everything going on.  They always make us know that we can go to them anytime with any question and we trust and believe that they will answer it honestly.

I thank God every day for Moms health. I hope and pray that God will always keep her in his healing hand.

My heart goes out to other kids traveling this same road.  My prayer is that they will have Faith and believe that God has them in the palm of His hand regardless of the situation.  Thieves can’t take you away when you’re resting in the palm of His hand.

–Colby

“For by grace you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast”      —Ephesians 2:8-9

Taking Flight

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer

Red Balloon

Some of us think holding on makes us strong; but sometimes it is letting go.

Hermann Hesse

Nostalgia.  The very real sense of “homesickness” for things or situations of the past can appear when you least expect it.  It can come in the form of a scent … a sunset … a book … or even a song.  Often, I wonder if the chemo “fog” that so magically formed in my brain has instead given rise to a deeper level of nostalgia—more vivid recall of long ago, forgotten memories.  I find it laughable that mid-sentence during a conversation, my brain can lose focus; yet during a morning “solo” jam session in the shower, the lyrics of a song can send my mind reeling down memory lane on a fast track to childhood.  This particular morning in the shower, lyrics from a song brought to mind a recurring dream I had as a child.  It came to me with such clarity, I could actually recall the emotions I felt as a child … awe coupled with fear.  There I stood, holding a big red balloon.  The very balloon I was enamored by in the dream was also the very object that brought me indescribable fear.  Fear of flight.  There was the fear that as I held tight to the balloon—it  would carry me away … while an equally fearful sense that at any given moment my hand could let go of the balloon and it would take off without me.

Life takes us by surprise and orders us to move toward the unknown—even when we don’t want to or when we think we don’t need to.

During my recent trip to Dana-Farber, I was confronted boldly with the ugly face of fear.  Fear of the unknown … fear of new beginnings … fear of letting go.   

Nine plus months have passed since I was plunged into this unknown, unexpected realm of a stage III cancer diagnosis.  My nonstop mission to do whatever necessary to put this thing in my rear view has sent me on a journey filled with lifejackets in a sea of doubt and confusion.   The lifejackets of chemo, bilateral mastectomy and radiation therapy have kept me afloat, making hope an easier vision.  Now I am left to tread these unchartered waters with Tamoxifen, or as some refer to it:  the little poisonous pill—one I will (hopefully) be swallowing daily for the next ten years.  Needless to say, I left my oncologist that day with little comfort as her simple advice spoke angst in my heart.  She advised me from this point forward I need to be mindful of pain that appears suddenly or lasts longer than usual, any shortness of breath or recurring headaches … etc.  Basically, I left the exam room that day feeling powerless, lonely and filled with a new fear—the uneasiness of fear itself.  Will it carry me away like that big red balloon in my dream so many moons ago?

I once read that love is what we were born with, while fear is what we learned here.  When you begin an unknown pilgrimage … you must not be afraid.  You need to have ample courage to make mistakes.  God uses the tools of disappointment, defeat, and despair to show us the way.

Though I feel as though somewhere along the way, I’ve lost myself a bit, I’m growing and learning to accept suffering as a vital life force flowing through me.  I refuse to consume my present and future moments with the fear of the unknown.  Yes—I’m certainly a work in progress, making many mistakes along the way, but I need to let go … sending my red balloon of fear aloft, knowing that letting go will give me victory moment by moment.

I’m beyond grateful for the outpouring of love and support so many have showered on me.  Now more than ever, I welcome and yearn for your prayers and words of encouragement.

Loads of Love … in hope,

Nicole

For God did not give us a Spirit of fear but of power and love and self-control. 

2 Timothy 1:7

Sponge Diving Our Way to Authenticity

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Inspiring the Senses

The Sponge Diver

Every artist dips his brush in his own soul, and paints his own nature into his pictures.

Henry Ward Beecher

We all have a narrative, a unique story to tell.  As individual collections of life experience unfold, we see before us a dramatic self-portrait form, a picture based on the very peaks and valleys that make up life achievements as well as life challenges.   Often times we sit back and view the painting through a foggy lens, one cluttered with learned behavior, tradition, societal expectations we feel compelled to align with, and so on.  The question surfaces:  Is there really such a thing as an authentic self, a bona fide me?

Pure art.  I once read that every good painter paints what he is.  Every so often one is blessed to experience something that leaves you spellbound.  I honestly didn’t expect a trip to the Museum of Fine Arts with the boys over the summer to  render such a state, but this particular visit was so pure, so meaningful … I’ll never forget it.  While exploring the unique handprint illustrated on every piece that day at the museum, I felt an intimate connection, a momentous view into the heart and soul of each artist.  I envisioned their hands at work, powerfully expressing their life narrative, with the purposeful strokes of a paintbrush.  Taking in the world around us, we often find relatable links to our own lives through the canvas of creation’s powerful pull.  For me, words are my art medium …writing my paintbrush.   Though not nearly as beautiful as a masterpiece hanging on a wall, my words become an artistic expression of my heart.  When I’m silent, I’ve usually failed to claim the peace that comes from tapping into creation’s “voice” all around me.  Recently, my silence has stemmed from allowing exhaustion to dominate my narrative.

I just completed the next “installment” of cancer treatment—30 rounds of radiation therapy.   Similar to chemotherapy’s bittersweet end, my emotions took me off guard.  Suddenly my head began to buzz in a sea of rhetorical questions:   What now?  Will I have the strength to not let fear dominate my existence?  Will I fail at keeping hope close?   I guess you could say treatment in some ways becomes supplemental courage. The poisons of chemo, the removal of body parts via mastectomies, and the cancer-causing beams that make up radiation—all contribute to a (false) sense of security.  The truest test of faith comes when you have nothing else to rely on … but the very faith you entered this ride with.  The past couple of weeks I’ve had a weighty question tugging on my heart:  Who am I?  Have I allowed this “life circumstance” to take over the pre-cancer me?  Coco Chanel said it best:  Hard times arouse an instinctive desire for authenticity.   

When I encountered The Sponge Diver by Winslow Homer that day in the museum, I became instantly gripped by its beauty and authenticity.  I envisioned myself there in the Bahamas, watching from a distance as a sponge diver emerged from a “naked dive” to the ocean floor, surfacing with his prize.  I thought of the rich history attached to sponge diving and the remarkable courage of early divers—always equipped with a readiness for sacrifice and a willingness to take risks.  In the old days when the skin diving method was used, divers went out to sea in a small boat, often using a glass bottomed object to search the ocean floor for sponges.   These authentic divers used simple methods … relying solely on their God-given bodies and their own natural breath-hold ability—historically performing at levels rarely attained by contemporary divers.   As time progressed, greed took over sponge diving and divers began using large, hard-hat diving gear to take on longer dives at deeper levels.  What resulted was a great deal of death and paralysis among divers.  The history of sponge divers shows us two faces of an empirical approach to life:  allowing the want for more to influence you, compromising everything; or staying focused on your God-given unique qualities that will not only get you the prize but without the compromise.  Fortunately, the beautiful centuries-old tradition Winslow Homer captured in his watercolor personified the original glory of sponge diving in its naked form.  Homer once said “You will see, in the future I will live by my watercolors.”  I’d like to think he pondered the authenticity of the scene set before him while painting this masterpiece.

Thursday, I have my next visit with my medical oncologist and the plan is to begin Tamoxifen, an anti-estrogen hormone therapy designed to stop the growth of cancer cells that may be present in the body, while blocking the effect of estrogen on these cells.  The plan is to have me on this for the next 10 years.

Isn’t it funny … as a child, we just want to be like everyone else.  As we get older, we desire to beat to our own rhythmic drum.  As we further mature, the connecting events of life further complicate our sense of self.  A diagnosis of cancer has made one thing crystal clear in my life:  I desire to be defined by nothing more than God created me to be.  My “now” plan is to be satisfied with my Creator’s design … the authentic, unique me.  It is only after taking off the dangerous diving gear of the world’s pull on us that we can find freedom like no other.

Nicole

 

Chasing Painted Ponies

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Inspiring the Senses

Trip to Heritage Museum 149

Whatever satisfies the soul is truth.

–Walt Whitman

Carousels.  Growing up, I never liked to pass up a ride on the merry-go-round.  Even now with my own boys, when an opportunity presents itself, I love to join them for a magical journey on the wooden horses.

What I remember most about carousels as a child … more than the mirrors, lights and creepy organ music being played—perhaps even more than the ride itself—was my need to thoughtfully search the carousel to find the perfect horse.  I loved finding unique characteristics … noble features that would make me feel like a princess (on this roundabout to nowhere).  Of course it was always necessary to find a galloping horse that went up in down.  I remember running to my perfect horse when it was time to get on, and as I looked ahead, I’d often see that overlooked stallion— a spectacular horse I hadn’t seen from afar.  Quickly I’d run ahead, eager to jump aboard my newly found beauty, then just as quickly I’d realize with a sigh, that my new friend is a stationary soldier, one that would not “gallop” up and down—a necessity on the merry-go-round.   Turning back to see my “perfect” horse, it was too late … another rider was “saddled” up for a journey on the majestic horse I had originally longed for.

The past several weeks post-surgery have been difficult.  As physical healing continues to flourish, the mental aspect of everything has really begun to seep in and though in some ways it’s been medicinal, in other ways it’s had a withering effect on my spirit.  I’ve had real time to wrap my mind around what has been … what is, and the unknown future that lies ahead.   Facing the unknown realities of the future often bring to light the significance of some forgotten truths from the past.

People in general have a tendency to long for something they don’t have or simply fail to appreciate the unique characteristics and beauty we’ve each been blessed with.  For me, as a little girl, I hated being a redhead. Though I came to appreciate my locks as I grew older, the moment chemo took all my hair, I not only longed for that long, thick ginger hair to return, I felt real conviction for all the times I didn’t appreciate it when I had it.  In a recent conversation with one of my oncologists, we laughed talking about how we always want what we don’t have.   I shared how I’d complain about my larger breasts growing up, always wishing they were smaller.   We then talked about breast reconstruction and the “silver lining” attached to breast cancer patients’ these days in the realm of options available—having “Hollywood” procedures at your finger tips to reconstruct your body/breasts to be fantastic and “perfect.”   Cue the crickets.  As I stood there dazed and confused … I imagined desperately how wonderful it would be to rewind time and take back all the foolish insecurities and longings I carried, and instead be content with what I had been given.  Silent, my only real yearning:  to have myself back completely, in every way.

Yes, many people do want what they don’t have—until they lose everything they thought needed changing.

During recovery, I spent a week’s respite on Cape Cod, visiting family.  I needed quality time with my boys, time with my thoughts (uninterrupted by the guilt of not being able to run a house as effectively), and most definitely time to get away from the big C . . . even though it unavoidably follows me wherever I go.  There, I was thrilled to spend a beautiful day at a historic museum with my Dad and the boys—one that also happened to have a classic carousel from 1908. Physically not quite ready to ride one of the beauties, I smiled, watching the boys pick out their “perfect” horse.   “Come on, mom!” the boys beckoned me to join them.  Logan, my middle son led me to the loof chariot … y’know that lame stationary sleigh ride that I never quite understood how or why someone would actually choose amidst the horses.  But there I sat, chasing the painted ponies … on a magic machine full of life going around and around—on my chariot.  I beamed watching my beautiful children ahead of me and realized there can be contentment in embracing change and the very real beauty that can come with it.

Radiation is starting tomorrow.  My radiation oncologist needed to make a few corrections, but I’m “tattooed” and ready to go—even had my dry run on Thursday.  Tomorrow begins my official 7-week cycle of daily radiation.  I will be doing what they call a “deep inspiration breath holding” technique to help reduce radiation to my heart and lungs, especially useful, as my cancer is on the left side.

I learned that the word carousel comes from the Italian word:  carosello which means “little war.”  How apropos that this thing called cancer has indeed been a “little” war physically, mentally and spiritually.  As I’m frozen, stationary on my chariot, the world continues to go around.  Thank God I love to travel, or I may have jumped off a long time ago.  Instead, I’m trying to embrace this season on the carousel, where though I may not feel like a princess on my chosen stallion, I can ultimately be content in drinking in the beauty set before me.   I long to appreciate this ride that God has orchestrated … and I plan to embrace the carosello as I continue to chase my painted ponies until the music stops.

Nicole

I praise you because I am fearfully and wonderfully made; your works are wonderful.  I know that full well.

~Psalm 139:14

Finding Comfort from the Inside Out

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Inspiring the Senses

starfish

Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.

—Epicurus

The distinct smell of newly fresh cut grass is exquisite to me and triggers an early childhood memory – something so nostalgic it gives me goose bumps.  Turkey dinner with all the “fixings” or even homemade mac & cheese (especially my Grammie’s) are favorite comfort foods for me.  Even hearing old “Journey” songs brings peace and comfort—Steve Perry’s voice soothing to the soul (don’t judge me).  Gulls . . . as annoying as they may be . . . the screeching sound of them soaring high above the sea, coupled with the smell of the ocean, gives me an amazing, amazing high.

I honestly believe I’m not alone.  Each of us has a bit of Epicurean in us . . . the Greek philosopher’s devoted pursuit of sensual pleasure, things that bring comfort to the senses.   Though perhaps different in nature, we each carry with us distinct lists of gratifying moments, those unique memories that arouse the senses and bring comfort to our souls—all the “go-to” things that help ease anxiety and stress.

Thursday was a LONG day and physically speaking . . .”fairly” comfortable.  The drains were finally removed at the plastic surgeon’s office.  Yes, a combined 3 feet of tubing was removed from my body . . . seriously–3 ft.  It was like exhaling a giant EWWW and WOW all at once.  It was indeed a very odd sensation, but nonetheless I felt a bit of relief having them removed.

Results.  The oncology team met me to go over the pathology results, the very thing I’ve been all-consumed by since rolling into the OR on the 14th . . . or honestly actually since beginning chemo in January.   I guess I felt since I’ve been on a fast track doing what I need to do, as aggressively as possible—those results will be the very comfort I’ve been seeking for the last 6 months.  They sat and explained that typically neoadjuvant chemo does one of two things when it works:   melts tumors like ice cream in the hot sun, or explodes tumors like atoms.  My treatment did the latter and exploded most of the tumor beds into fragments.  Of the many fragments left they found a small amount of invasive carcinoma left.  After removing everything, they are confident they got clear margins, no chest wall or intravascular invasion revealed.  They also removed 13 lymph nodes.  They considered the lymph nodes a macrometastases.  One particular node that clearly showed the goopy evidence of chemo at work, though cancer was still present—was most prominent.  Unfortunately, it was difficult to determine how many of the 13 nodes were positive for cancer pre-chemo . . . but for now we know for certain chemo did a pretty good job and my prayer is that my radical surgery helped a bit too.

So all in all the results were “good” . . . not crystal-ball, magical moment of “You’re cured for good, no further treatment necessary, all cancer forever gone”  good . . . but good.   Isn’t if funny that even with cancer we seek the best answer that will bring “comfort” to our minds.

My next stop on this exhausting journey is 7 straight weeks of radiation, 35 sessions.  That should start in a few weeks and based on my age and the aggressiveness of the cancer, my oncologist plans to then start me on daily Tamoxifen, an anti-estrogen therapy for 10 years—God willing He’s got at least another 10 year plan for me here.

I love to preface everything with the cliché “in a nutshell”, but you all know that my mind (even in chemo-crisis fog mode) is constantly moving and active and it’s rarely possible to find a nutshell big enough to wrap up my thoughts.

Comfort and contentment always come with uncertainties and all too often bring results we can’t predict.  All our feel-good moments are simply sought and fed by the desire to momentarily free oneself from pain, constraint or even fear.

I can’t help but think of my Grammie’s house.  Her tiny house in Maine has always been a source of mostly fond memories during childhood.  I always remember playing in the backyard, my secret little special “fort” far in the wooded area of the yard.  I laugh hysterically now, because honestly the memories of the yard when I was young were memories of this HUGE piece of land.  Now,  I don’t exactly recall the age when I visited the house after being away for a while, but I’ll never forget getting that nostalgic feeling pulling up to the house, eagerly running out into the backyard, my “comfort zone” of childhood.  There I stood—my heart sank.   Where was it?  It was unfathomable that this postage stamp of land was actually the same enchanting romping ground I enjoyed playing as a child.  For a quick moment … that nostalgic “comforting” memory shattered before me.  One would call it:  the Epic letdown moment.

Can it be that those “comfort” memories of the senses, can often disappear by our own shallow expectations of what we remember and how we wish to freeze such memories to permanently make us feel good.  I had the pleasure of talking to my dear friend, Jean this afternoon, and she said it perfectly:  “We need to find our contentment on the inside and not worry about the temporary comfort measures that come from our senses.”

While Epicurus did believe that pleasure alone should be humankind’s pursuit, in actuality, Jesus is the only true source of comfort, when He sent us the Holy Spirit.  Though I learned perhaps later in life than some, I now know that the same God that gave us our intellect and senses is also the only true source of comfort.  He is our ever-present help in need, the only guarantee that never shrinks like Grammie’s yard in my mind.

Though I know this truth in my heart . . . I realize how often I’m still so self-reliant on my own sources of comfort to bring me through this rocky journey.  I pray for strength and courage to continue to press me into the only source of comfort that will keep me going . . . and ultimately keep me sane.

Please continue to hold me up in your prayers.

I love you all so much!

Nicole

For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.  If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.  And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.   

2 Corinthians 1:5-7

When Life gives You Lemons … Indulge

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Inspiring the Senses, Looking and Feeling Your Best

Lemon

Let me embrace thee, sour adversity, for wise men say it is the wisest course.

~ William Shakespeare

“Easy-Peasy-Lemon-Squeezy” is a tune each of my three boys has declared on more occasions than I can count.  The expression was mastered by the boys in Kindergarten, and has since become a jingle of choice, my little mantra in times of difficulty.   What I never realized, however, was the amazing truth behind the cutesy rhyme—in its very literal sense.   Lemons are truly an easy solution to a multitude of problems.

Many people have asked where I’ve been these days.  The normal “zest” I try to tap into every day in some ways turned sour this past month or so.  I think I’ve been in survival mode since Christmas, and as deep fatigue and malaise set in with the last phase of chemo, I guess the reality of the “big C” has really weighed on my mind much heavier.   I have found it difficult to find inspiration in the things around me that usually bring clarity and joy to my daily life.  Instead, I’ve been “puckering” up to the sour circumstances of this thing called cancer and all the un-pleasantries that come with it.

Chemotherapy is now done.  Finito.

The last few visits to Dana-Farber had me physically ill before arrival.  I guess you’d call it a psychosomatic response to the dreaded poison that was about to make its way into my veins.  Ironically, the last infusion of AC was bittersweet—a real sense of relief that chemo was over coupled with the real fear that chemo is over …. surgery looming on the horizon.  There were tears, hugs, well-wishes and love poured out on me and my heart ached a bit knowing that the very poison I dreaded every week , the very thing that made me so sick and tired was no longer going to be beating me up to make me well.  It sounds sort of warped, but there was a sense of trauma that accompanied me out the door that day.

Lemons.  A while back, my sister, Michelle lured me into a lemon love-fest, leading me on an exploration of this citrus gem and all the wonderful medicinal properties it delivers.  I won’t lie, as a woman, I love learning about hidden beauty secrets that…well, help me look and feel 20 again.  Who doesn’t?  So learning that this citrus fruit full of Vitamin C is also a great source of protection from free radicals, y’know those pesky little things that, theoretically speaking—“age” us … led me to begin my love affair with the savant of the citrus family—limones.

Cancer treatment does a number on your body.  For many, that number is called something like whopper-doozie or as I like to call it:  “le destructeur” to the enth degree.   Chemo is cumulative.  In short, different symptoms present at different times, many worsening as you go.  Completing 20 weeks of chemo—my “le destructeur” wreaked havoc on a few different areas of my body, some worse than others.

First up—Anemia.  This past month, my red blood cells were at a relatively speaking all-time low.  For me that equated to difficulty walking up a flight of stairs without looking like that annoyingly under-exercised person gasping for air at the top of mere 10 steps (no judgment here).  Yup.  I was that chick.  Only as I was gasping for air, chest pain and often severe headaches accompanied it.  It was frustrating.  I’m usually the one racing up six flights of stairs in 4 inch stilettos, with a resting pulse rate at the finish line.  Seriously—BEYOND frustrating.  On the bright side:  I could walk up a flight of stairs.  After all, some struggling with severe anemia can barely get out of bed because they’re just too exhausted to even put their feet on the floor.  Little by little, I am gaining back strength and stamina, but adding the bitter-tasting, yet miraculous power of lemon juice has the added benefit of aiding the body to produce red blood cells, thus speeding along the process.

The beauty of this little yellow fruit knows no bounds as it also helps ease anxiety.  Lemon balm has a calming effect and therefore may be able to help remove fatigue and exhaustion, anxiety, nervousness, and tension—pretty much the very things that sour my spirit.  I’m not saying Valium can be completely tossed to the curb, but hey…I’ll pucker up.   Ironically, I also earned that though I’ve been in a state of brain fog from the chemo, apparently inhaling lemon oil helps to increase concentration and alertness.   (I wish I had remembered this fact during all of my forgetful chemo-brained moments … that still plague me).

In many ways my lemon in life has been the source of much sweetness.  Cancer’s sour taste has become the old adage:  “when life gives you lemons, make lemonade.”   My lemonade has been tasted in the sweetness of new relationships and the beauty that comes with having people to love and be loved by….so many bringing light and joy to my life.

Last Wednesday I had an MRI to see how the cancer responded to the chemo.  I won’t learn results until this Thursday, but ultimately know the full picture won’t be revealed until I’m opened up.  My prayer is that chemo did its thing … which will help guide the surgeon to a goal of a better outcome.  My surgery date has been set:  June 14.  I felt a pit in my stomach when I got the call confirming the date… but I know it’s time.  The date however does bring special significance—Logan’s birthday (also Flag Day).  I was further inspired by my friend and colleague, Sarah—her Grandmother also sharing that birthday, a precious soul who lived to be 101.

Nothing in life is a coincidence.  His timing is perfect.

My son, Logan recently placed a scripture on my bathroom mirror.  His note brought tears to my eyes as he wrote:  Mom, Isaiah 43:1-4 says it perfect— “Do not fear, for I have redeemed you; I have called you by name; you are Mine!”

Thank God, I am His.

Little by little, I’m shaking off my sour to make room for the sweetness and zest that comes from indulging in the lemon that has been sent my way for a season … for a reason … for a greater purpose than I may not be able to grasp just yet.  Though I feel changed, I know that my Father has not changed and will forever be in the business of unfolding His plan and purpose for my life.  That fact alone brings me peace that passes all understanding.

All my love . . . Nicole

What’s My Message?

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer

Message in a bottle

“All of us have in our veins the exact same percentage of salt in our blood that exists in the ocean, and, therefore, we have salt in our blood, in our sweat, in our tears. We are tied to the ocean. And when we go back to the sea — whether it is to sail or to watch it … we are going back from whence we came.”  

—John F. Kennedy

I’ve always been drawn to the sea.  In fact, in many ways I feel my body came equipped with a little internal homing device that guides me to the ocean—much like a bird flying south for the winter.

Those who have known me for some time and even those who may have stumbled upon this blog have most likely gleaned that my fascination with the ocean is in many ways, tied to the intimate relationship we share with it.  An earlier post even revealed my love for sea glass, describing how though I find each piece remarkable in beauty, what really intrigues me most is the story behind each gem—the intimacy attached to the moment it started its journey in the sea.

Going through my emails, texts and letters this week, I started thinking a lot about messages.  It seems, the best messages received in our lives come from passion . . . deliberate passion.

Although no one knows for sure when the first message in a bottle was released, the earliest records  show that Theophrastus, an ancient Greek philosopher was the first known person to release such a message in a bottle in an effort to prove that the Mediterranean Sea was formed from the inflowing Atlantic Ocean.  History also reveals many shipwrecked people who resorted to sending messages in bottles.  Often these messages weren’t discovered for 100 years or more.  Unfortunately, their cries for help were futile—most certainly dying long before the message in the bottle was ever found.

To even contemplate the feeling I’d have finding a message in a bottle makes my heart skip a beat.  The romantic in me would love to think all messages tucked away in a bottle would be those of a great love story.  That thought alone got my mind thinking.  What would my message be, were I to send a bottle adrift at sea?  Would it be that of a passionate cry for help, or instead a message filled with a rich love story, a Hope that can weather any storm.

Thursday started my new cycle of chemo—A/C.  Though I anticipated feeling very invigorated Friday with all the steroids onboard, instead by mid-afternoon, I felt rather ill.  I started the Neulasta injection that night, taken to help boost my immune system.  Though I was initially nervous giving myself a “shot,” it was really quite easy and painless.  Yesterday proved to be a different animal altogether.  I just didn’t feel like me in the least.  My movement was only to use the bathroom.  I just felt like junk.  There’s nothing more daunting than feeling helpless.  Helplessness carries with it a true sense of defeat.  Had my bottle been thrown out at sea yesterday, the message filled with earnest passion in the face of defeat would have certainly been  written as an S.O.S. — an urgent appeal for help.

Glass bottles, though fragile do very well at sea . . . seemingly bobbing endlessly through the sea with no damage.  I’ve read stories of sunken ship wreckage with bottles discovered in perfect condition well after 250 years under water.   It’s no wonder that bottles were often the chosen vessel during a crisis, as a means of reaching someone—their very durability having the potential to last forever.

Our messages in life need to be deliberate, and safely delivered with passion.  In our weakest moments—unable to fathom anything other than shuffling one foot in front of the other, it’s imperative to reach for victory.  Though difficult to look up when you feel helpless, it is at times like these, that God’s word reverberates in my soul:    “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God.”  ~Ephesians 2:8

Through faith, God has thrown the life vest.  Not of our own strength, but instead His gift of salvation, the lasting message of Hope.

You never know where a message in a bottle will end up or even how long it will take to get there.  What we do know is that the messages we send forth in life through the shipwrecks or heartaches we face can have a lasting impact.  As I just begin this voyage on a rough sea, I know that there will be many times when I will feel weary and lost and in desperate need to send out a cry for help in my message in a bottle.

My hope is that my message will always be that of the ultimate love story—a message of victory, not defeat.

 

The View from Below

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer, Uncategorized

Santorini

“One sees great things from the valley, only small things from the peak.”

― G.K. Chesterton

Pent house suites, mountaintop lodges, castles atop grand cliffs . . . the allure of high places is something we all crave to experience at one point or another.   Top level retreats seem to indeed be sought out destinations of choice—the very essence of luxury.

When traveling to Santorini, Greece—John and I chose the breathtaking town of Oia to call home for the duration of our stay.  The idea of staying in a traditional cave house carved inside volcanic earth was in and of itself—thrilling to the core.  Add the fact that it’s panoramically set 1000 feet above the Aegean Sea—well, let’s say the feeling was nothing short of Utopia on steroids.  The views coupled with the meandering narrow paths along the steep cliffs proved that though Oia is certainly not for the faint of heart, it is most definitely the choice destination for anyone seeking ultimate beauty . . . on high.

Recently, I’ve hit a low point on this pilgrimage called cancer, a point where time seems skewed, warped in fact.  One moment everything appears to be moving in slow motion, then BOOM—time seems to be running full speed ahead.  As if by magical “clockwork,” my emotions follow suit, stuck in vacillation-mode.  One minute, I’m eager to have chemo in the rear view mirror, while a split second later I become crippled with anxiety about moving beyond chemo onto the next phase of treatment—desperate to stop time in its tracks.

Just hours from now, I’ll be infused with my final dose of Taxol, followed by 4 rounds of dose-dense A/C every other week— that lovely chemo cocktail better known as the “Red Devil.”  How pleasant.  Not exactly a happy hour beverage of choice.  It would seem anything with the word devil tied into its nickname . . .  can’t be good.  As appealing as a free Brazilian wax may seem, if it means having someone gown up to stick a syringe of bright red poison into your vein . . . well, I guess I would have to say hair isn’t such a hardship.  All joking aside, as eager as I am to be done with chemo, the thought of what awaits me on the other side is almost too unbearable to embrace just yet.  Don’t get me wrong, I yearn for the fatigue, pain, neuropathy, malaise, and hairless head to be in my rearview mirror, but it’s hard to fathom the idea of surgery . . . that which will permanently change me.  Forever.

I recall the goose bumps I got over those surreal cliffs in Santorini.  Truthfully, those goose bumps never came while looking down at the “tiny” wonders more than thee football field lengths away at the bottom.  Instead, they came when we were at the bottom—looking up.

The view from below always took my breath away.

Right now I stand somewhere at the base of my cliff in this cancer journey, longing for that destination on high.  Why aren’t I looking up?  Only here can I really see the hope and future blessing stretched out before me, the surreal beauty that might even take my breath away . . . if I let it.

Who hopes for what they already have?  But if we hope for what we do not yet have, we wait for it patiently.  (Romans 8:25)

Love,

Nicole

xoxo