Tag: Breast Cancer

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

Smiling from the Valley of Shadows

by Seaglass4Nicole, posted in Uncategorized

smiling through the shadows

“It is impossible for you to go on as you were before, so you must go on as you never have.”

― Cheryl Strayed

Books.  Some of my best experiences have come from the pages of a writer’s mind.  I’ve been held captive in more books than I can count…some even revisited from time to time when I desperately feel the need to recapture the feeling I once had in between the lines on a page.  I once read that a book is truly the only place in which you can examine a fragile thought without breaking it.

When a friend recently did a random “how well do you know your friends?” quiz with me, one question was:  Does your friend prefer books or movies?  Though she knows I love movies and has actually never really been around me reading a book, she still guessed right away that I was a lover of books. I guess it’s the subjective and evocative nature of written fiction that creates a real intimacy between your mind and emotions—proving Edmund Wilson’s point that no two people have ever read the same book.

Once in a while, however, a movie will come along that resonates deep within me and stays with me like the pages of my favorite reads.  Two such movies have had my mind reeling recently—Wild and American Sniper—both based on memoirs I had yet to read, while also being politically and socially controversial—intriguing me even more.

Wild is a beautiful film based on Cheryl Strayed’s memoir, recounting her solo 3-month, therapeutic journey along the Pacific Coast Trail from the Mohave Desert through California and Oregon to Washington State.  As an inexperienced hiker, Cheryl’s journey was a desperate pursuit, a battle of sorts, to find herself once again after losing her young mother a few years earlier, and further messing up her life through a careless and dangerous fling with heroin leading to a failed marriage.  Her soul’s “sole” mission on the journey was simple:  “walk myself back to the woman my mother thought I was.”  This beautifully poignant memoir carries with it not only the physical weight of Cheryl’s immensely heavy backpack she wore along her journey, but through a series of mini-flashbacks, she further carried the emotional weight of the haunting memories of her loving mother and her own reckless lifestyle.

Truth be told, when it comes to American Sniper I didn’t realize how much this would stay with me.  Both gripping and unforgettable, it highlights US Navy Seal, Chris Kyle’s masterful account of his extraordinary battlefield experiences, in what I consider to be one of the greatest war memoirs of all time.  But ultimately Chris’ biggest battle begins at home, in his desperate attempt to piece together his life on the other side of the battlefield.

Two very different movies, yet both sharing a common thread:  both Cheryl and Chris were each walking through their own personal valley of shadows and found it hard to find the light casting them.

In the late Fall last year, I began experiencing panic attacks and levels of anxiety daily that I have never experienced before.  Often they would even wake me from a sound sleep…in a torturous effort to bind fear and brokenness.  In those dark moments, even with prayer at my helm, I couldn’t shake the 3AM attacks that came out of left field.

For many reasons, I kept the problem tucked away safe within the confines of my mind—finding it too difficult to discuss with anyone, mainly out of guilt.  I felt guilty that I could even be anxious about anything, especially as I watch friends in the cancer community—many in the active battlegrounds of treatment, others actively dying before our eyes.  What could I possibly have to panic or feel anxious about?  Part of me knew that a “positive” attitude in prayer should instead have me celebrating the fact that I’m finally through with active treatment and almost nearing the end of reconstructive surgeries.

But it wasn’t that simple.

At a regular appointment with my oncologist in early December, I broke my silence about the situation.  When she first told me what she believed was going on, I was in denial. There must be another “PTSD” than post-traumatic stress disorder, I thought.  How can someone compare my cancer journey to the many war veterans that legitimately have PTSD, like the Chris Kyle’s out there who have heroically served on the front lines and witnessed firsthand the horrors of battle.  After all, I am just an ordinary person, a simple girl, who happened to go through what millions of other people before me have gone through in the realm of surviving a cancer diagnosis.

My oncologist went on to share with me that though it’s often easy to only place victims of PTSD with war soldiers returning home from battle; in fact, the condition is believed to be caused by the experience of a wide range of traumatic events including death, serious illness or some situations in which the individual felt intense fear, horror, or powerlessness.  She also revealed that what was going on with me was common timing among many young cancer survivors out of active treatment.  That said, she suggested I go on a short term, mild antidepressant that was considered a popular, safe choice with many cancer patients.  I took her advice and after a few weeks on the drug, I found myself in the small percentage of patients who had extreme adverse effects, including racing heart, blurry vision, unbearable muscle cramping, vivid nightmares, severe depression…and much darker thoughts of suicide—something completely foreign to me.

Currently, as I’m on the upside hike of that downhill spiral, it seems I had built such a wall between my cancer diagnosis and treatment experience and how I felt about the entire experience that I was incapable of reliving both simultaneously.  I could talk about everything that happened, even walk through treatment and surgeries with a smile, but I couldn’t feel them.  When I tried to bring it all together in the fall, when I tried to remember how I had felt and the frenzy the last two years had been…I disappeared in my own head.

Chris Kyle’s journey from the throes of war back to civilian “normalcy” was clearly no easy feat… his memories of life in battle and his longing to be “back to normal” in civilian living were nearly impossible to experience simultaneously.  As Chris finally found the light casting his dark shadows through passionately serving soldiers struggling with the fight to overcome PTSD, he went on to shine the spotlight bright on the condition, co-founding FITCO Cares, the non-profit foundation dedicated to help ease veterans back into civilian life.

As Cheryl Strayed’s journey along the Pacific Coast Trail progressed, as she shed the physical load and symbolic emotional weight from the backpack—some of those deep wounds of death and destruction were able to find air to breathe…and heal.  Towards the end of Wild, approaching journey’s end at the Bridge of the Gods over the benighted Columbia River, Cheryl writes: “I felt fierce and humble and gathered up inside, like I was safe in the world now.”  Cheryl, too, had found the light that had cast her darkest shadows.

Carrying heavy loads we were never intended to carry, filled with things such as fear, worry, discontent and heartache—make it easy to grow weary and worn out.  We all fight battles in one form or another, and sometimes it’s our frail human nature that desperately pleads for these battles to be taken away from us.

Many times we carry these loads as we walk through the valley of shadows…never realizing that it’s only in struggling with these shadows that the light is made manifest.

Though I am but a work in progress I will never cease to thank you, Lord for Your mercies that are new every morning…

Psalm 57:1

Have mercy on me, my God, have mercy on me, for in you I take refuge.  I will take refuge in the shadow of your wings until the disaster has passed.

chris kyle

Chris Kyle’s service, life and premature death will never be in vain.

Promises Live on the Other Side of the Rain

by Seaglass4Nicole, posted in Uncategorized

Rainbow

There is no pain so great as the memory of joy in present grief.

Aeschylus

I’ve been sporadic at best in blogging, but in all honesty life has been anything but mundane.  In fact “blur” is the only four-letter word that could adequately describe the past month and a half—well perhaps not the only four-letter word.

My family is still reeling from two harrowing losses, only three days apart—my Grandmother, the matriarch of our family and her youngest daughter, Dolores, my Aunt who was only 53 years old.  The shock is still fresh—with the chaos of funeral arrangements and such, making it both easy to compartmentalize the grief while simultaneously making it hard to focus on the heart’s cry.  I often feel like my life is sadly akin to my drafts folder—those half-articulated writings I fully intended to finish and publish, but instead they sit, waiting hopelessly for my procrastinating hand to press send. My drafts folder in life seems to consist of the many thoughts and pain, those areas I’ve started to deal with, but instead put them on the mental back burner.  I guess some things are just too overwhelming to take in all at once.

Rain.  I have a sort of love/hate relationship with the rain.  It can be the very sound of comfort and nostalgia, rhythmically helping me relax and sleep at night. Yet rain, when you’re seeking solace under the warm sun—becomes disheartening at best.  Though we can’t predict the weather, I can always predict disappointment when you wake up on your first day of vacation, to grey skies and the sound of rain pouring down on the roof.  Over Spring break I arose to such a morning on the Outer Banks in North Carolina.  It may sound childish, but inside I had a bit of a mental temper tantrum.  I so desired some long overdue down time for the entire family—sunny opportunities to escape the responsibilities and realities of daily life as we know it.  The rain was killing my buzz.

The Outer Banks was my escape plan.  When you receive a cancer diagnosis, everyone in the family receives a cancer diagnosis.  There, I planned to be still and enjoy beach life, while also taking a bit of time to reflect on the past year and a half—the challenges of treatment, and the challenges and triumphs of balancing family, work, life … and cancer.  I was excited for my entire family—even my sweet German Shepherd, Miles—to finally get away from our chaotic daily routines and instead enjoy sun-filled, fun days … away from it all.  My disappointment was soon turned around as the weather became sunshine and blue skies, blessing us with beautiful days amidst a surreal backdrop of fantastic beach and dunes.  The promises and desires for that Spring family holiday lived boldly on the other side of the rain, and I will forever cherish the memories made.

Unfortunately, it was during one sunny day on our Outer Banks’ adventure that the phone call came in from Maine, informing us that both my Grandmother and Aunt were brought to Maine Medical Center, both in critical shape.  We learned my Aunt had been brought into surgery to help stabilize blood clots that had formed around her lung and heart.

In the few days to follow, they managed to stabilize my Aunt and she appeared to be doing well enough to leave the intensive care setting to a regular hospital room.  My Grandmother, however, had reached a point of finality in her long journey with Leukemia & rare blood disorder.  After two and half years of (often weekly) blood transfusions, she was worn out.  She informed her doctor she was done with treatment.  We all knew some day ‘that day’ would come … but it’s never easy when it does.  We all stood coping with the realization that Grammie would decline quickly without her transfusion and would now be entering Hospice care—in a long-term care facility in Portland.

Two days before my Aunt’s untimely death—Michelle, my Sister, captured the phenomenal rainbow pictured in this post, outside my Aunt’s hospital room window.  My Aunt was fascinated with its beauty and in a short call with me and my boys that same evening, she said, “Just think, I’ll be going home, good as new on Tuesday.”  I believe in my heart, that is just what she did.  As the ambulance arrived to move her to rehabilitation Tuesday afternoon, amazingly to the same long-term care facility my Grammie was in, my Aunt coded. Gone at 53 years old.

She did go home as good as new that day to a place where she will run and not grow weary, walk and not be faint … have a clear mind—no longer battling bipolar-depression.  Physically and mentally, free at last.  We all joined together around my Grammie in those final days still trying to exhale the shock of my Aunt’s death.   My Grammie went home to be with the Lord three short days after her baby girl.

We celebrated their lives in one service together…as they always were—together, for the past 53 year.  Our hearts ache, though we find comfort in the knowledge that they are forever intertwined in Heaven—free.

My sister and I gave the eulogy at the service, and though difficult, we felt compelled to share our hearts even though we knew without a doubt we would fail to perfectly articulate the immeasurable and indescribable Mother, Aunt, Grandmother, Sister, Cousin, Great-Grandmother, Niece and friend found in the two beautiful women who have been an integral part of our family our entire lives.

Grief is the price we pay for love, just as it is impossible to capture the rainbow without the rain.  Though I know I will find myself searching the crowds for their faces for years to come … the truth is I am blessed for the love and rich memories I will forever hold in my heart.

I am honestly not inviting you to a pity party, but my life has been seemingly under torrential rains since the dreaded day I heard the words ‘you have Stage III breast cancer.’  Tomorrow, I face the long reconstructive surgery exactly one year from the dreaded bilateral mastectomy.  Though I would be lying if I said I’m not a bit nervous to undergo such a big operation … my heart’s desire is that it will bring me one step closer to seeing the beautiful promise only a rainbow can bring … on the other side of the rain.

Your thoughts and prayers for a seamless procedure and recovery are greatly appreciated.

Like the appearance of a rainbow in the clouds on a rainy day, so was the radiance around him. This was the appearance of the likeness of the glory of the Lord.

Ezekiel 1:28

The Gift of Living Well

by Seaglass4Nicole, posted in Uncategorized

candles

God gave us the gift of life; it is up to us to give ourselves the gift of living well.

Voltaire

Last year on this very date I sat in a room … a room with a view, in fact.   Sitting 9 floors above the hustle and bustle of city life, instead of celebrating my birthday with a view from a hotel suite, my view was in a chemo suite at Dana-Farber Cancer Institute.  Bald and weary, I sat with an IV drip—on my 7th week of chemotherapy.  I clearly remember thinking:  Wow, how is it that I’ve complained about birthdays … while only dancing into my 30s … and now I’m not so sure I’ll live to see 40.

So though I don’t typically like to toot my own birthday horn—if getting through this past year has taught me anything, it’s that I cannot afford to be casual or glib about birthdays ever again.

So my birthday wish this year when I blow out those candles tonight will be all about a prayer to live well … seizing each day … moment to moment … hour to hour.

Thank you, God, for giving me the gift of life.  Forgive me for all times I’ve squandered precious moments and opportunities to live it well.

Today I celebrate the gift of life.  I’m alive.  Thank God.

Nicole

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

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

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

Swinger of Birches

by Seaglass4Nicole, posted in Uncategorized

birches

. . . So was I once myself a swinger of birches.  And so I dream of going back to be. It’s when I’m weary of considerations, and life is too much like a pathless wood where your face burns and tickles with the cobwebs broken across it, and one eye is weeping from a twig’s having lashed across it open. I’d like to get away from earth awhile and then come back to it and begin over.  May no fate willfully misunderstand me and half grant what I wish and snatch me away not to return. Earth’s the right place for love …

–Robert Frost

I love birch trees … I always have.   The beautiful bark and graceful branches and shape have long been sought after landscape choices for many seeking beauty and exquisite charm in a simple, artistic way.

Some months back I remember traveling and as the passenger looking dreamily out the window, I saw what seemed to be a good mile of nothing but clusters of birch trees.  I was mesmerized by the beauty and remember commenting to John how I’d love to be lost there in the woods amidst the birches.  Fortunately, John’s known me long enough to know how “unique” my imagination is . . . but also how crazy I am; therefore sped up a bit, most likely afraid I would ask him to pull over and drop me off—me all too eager to be lost in the “forest of birches”.

Surgery happened.

My surgical oncologist is a rock star and knowing a bit about my music interests and the frame of mind I was in, I let her choose what music would be played in the OR.  So after praying and being wheeled down the hall, I entered the bright OR with the very unique and melodious Dido—calming my nerves incredibly.  My surgeon and anesthesiologist held my hands until I slipped away to Dido’s beautiful voice, remaining in never-never land for the next 7 hours.

I don’t actually recall awakening per se, but I do remember in my dreamy, morphine fog, seeing John for a moment, next my mom, and then my sister.  My eyes couldn’t stay open for long, but what I later realized was that I had to be alone that night, which killed me.  My family was told they were only allowed about two minutes to see me as we learned the hospital was over-capacity, meaning  there were no rooms to send me to—so I would be spending at least one night alone in the PACU, no visitors allowed. The pre/post anesthesia care unit (PACU), consisted of a lovely 2×4 curtained-space where I was surrounded by sick people going in or coming out of surgery.   Not to whine, but I honestly felt helpless and alone, knowing that my ONE expectation and comfort pre-surgery was that I would have my family around me when I awoke.  In my mind, I needed this more than ever, because though this necessary “thing” needed to happen, this surgery (that I still don’t vocalize all that much), the thing that was vainly and intensely dreaded—yet eagerly anxious to get over with, hoping to remove this thing called cancer out of my body (with the goal:  for good)—I felt more vulnerable and weary than ever and desperately needed people who loved me around me when I awoke.

Now let’s face it— typically, any type of amputation is a day surgery these days with insurance or at best an overnight stay.  Staying 4 nights was over the top for my little “Angie Jolie” procedure.   The result of my surgery was apparently “beautiful” …. odd choice of wording, but okay, whatever.   By the middle of day two in PACU-ville (still no room available) I was told I would have a private room by dinner time.  Yay.  What I didn’t know was that in all the unseemly unfairness in my “lonely Nicole land”, the staff, some very special angels in my midst who really understood my emotional struggle really hooked me up—BIGTIME.  My room was in the “celebrity hotel quarters” of the hospital, or the place where those who choose to spend a month’s salary per night out of pocket after insurance go to heal—private chef and all.  Honestly, God is good, because this is NOTHING I would ever choose even if I were celebrity-status, but after my disenchantment post-surgery, it was indeed a lavish treat, though not exactly one of my “bucket list” return spots of interest.

In and out of sleep the last two weeks, I’ve thought and dreamt about birch trees … I don’t know why, but they’ve visited me in my dreams.   What does the birch tree symbolize?  I guess from what I’ve gathered, the birch tree symbolizes a fresh start and can bring courage and determination especially to those of us who are treading the path of spiritual growth and weariness.   Although the birch does appear fragile, in all its “romantic” carving ability . . . (y’know , the way lovers can permanently make a mark on its writeable bark), instead, the birch tree is extremely hardy—teaching us that in apparent weakness there is often to be found great strength.

Worldwide, birches also promise new life and love, and are great symbols of purification and renewal, helping to focus our attention on our potential for change and on the consideration of new directions and goals to be experienced in our lives.

When I think of Robert Frost’s masterpiece—“Birches” I’m reminded of the swinging motion—the substance of the poem and the deep force that comes with such a motion.  My life is filled with the contrary pulls of truth and imagination.  Tangible and spiritual.  Control and abandon. Flight and return.   The upward “swinging” substance of the poem brings me to imagination and escape—away from the ultra-heavy truth of cancer and all the changes and uncertainties it has brought to my life and those I love.  The downward “swing” and truth of Frost’s brilliance, brings me back to earth, to face the challenges set before me and to look with fresh eyes at the many areas of my life that need clearer focus, new direction, deeper love.

I’ll be honest—Truth with a capital T for me is that I often desire to get away from the earth awhile these days, becoming a swinger of birches.  The thought and attraction of climbing a beautiful birch, leaving the difficulties and weariness of this journey behind is in many ways a no brainer.  Who wouldn’t want to escape?  Life is so much like the “pathless wood” Frost speaks of.  One easy way to navigate would be to climb a tree, high above every obstacle below.

God, however is Love and has intricately put each of us here for a plan and purpose bigger than ourselves.  When I think of that, it motivates me to pursue all He has planned for me regardless of how much time that may mean here on Earth.  I love how Frost says in his poem:  “Earth’s the right place for love.”   For now, he couldn’t be more right.  In my deeply imperfect state, constantly craving escape, I must return from my upward swing and come back again … to keep going where He wants me.   I’ll always want to push toward Heaven, where difficulties and heartache don’t exist, but as His plans have me here, I need to know the limits and limitless abilities my Father has chosen for me, and pursue them now with passion.

Yes . . . I love birch trees.  They are the perfect vehicle.  A thrill to climb, yet firmly rooted in the ground—never allowing one to sever the ties God has with His plans for us here on Earth.  Swinging down takes experience, skill and courage . . . leaving that higher place.  It means that you take risks and you explore the mysteries of life. Being a swinger of birches means I can look back on life and be proud of the accomplishments and challenges.

I’d like to go by climbing a birch tree, and climb black branches up a snow-white trunk toward heaven, till the tree could bear no more, but dipped its top and set me down again.  That would be good both going and coming back.  One could do worse than be a swinger of birches.     

Tomorrow’s a new day, and actually the day I will learn of my pathology results and hopefully have these dreaded drains removed … (for all you who’ve had them, you know EXACTLY what I’m talking about).  I will keep you updated on the news of my results.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.      

2 Corinthians 4:16

Nicole

 

 

You Just Can’t Overstay Hope’s Welcome

by Seaglass4Nicole, posted in Uncategorized

spring

Hope (hōp)

Verb:   to cherish a desire with anticipation

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

Hope brings significance to each and every moment we encounter.   Without it . . .  there’s no meaning to anything under the sun.

I know it has been a while since my last post.  Truthfully, this month has been a challenge—physically, mentally and spiritually.  Early in the month, I started my new chemo regimen:  dose-dense AC infusions—every other week.   I didn’t realize how emotionally bankrupt I would soon become.  I guess as my blood counts drop, zapping my energy level  like a nuclear missile—my spirit seems to wither too, much like the beautiful,  luxurious flower arrangement my nieces sent my way recently, one I’ve been desperate to keep alive.

Spring.  It’s funny the little things a girl thinks about as Spring emerges:   manis, pedis, new open-toed sassy stilettos  . . . perhaps a new outfit or two.  I covet my yearnings for these things that are simply not to be for me this year.  As I try desperately to hide my hideous nails in public, each one purple and black, lifting from chemo-related blood and infection . . . and my equally hideous, neuropathy-plagued feet, no longer acceptable for open-toed sassy shoes or pedis­­—I indeed feel deprived and sad.  Today, Lance, my 7-year old, in all his sweet honesty, pointed out the other sad fact that my eyebrows are disappearing, the final hair follicles to die.  The simple fact is:  it’s hard for me to have a Spring in my step or outlook these days.

Regardless of my thoughts filled with vain minutiae, Spring continues to unfold and as the crocuses begin to blossom in my yard, it’s impossible not to hear the heralding trumpet of new life spring forth.  With it comes a glimmer of excitement—a hope that day by day the season will continue to blossom, inspiring beauty in its warm welcome.

These days, my life is filled with urgent intention.  In fact, I find myself anxious and depressed when I’m too fatigued to move because I’m afraid I’m going to miss a moment, a great memory I can’t afford to lose . . . a picture that can never be recaptured.  Reflection has become part of my season of change.  Like Spring’s weather, this season of my life is a gentle reminder that I need to be cognizant of the rebirth taking place all around me—those  blossoms that not only take shape in my yard, but in my relationships . . . in my children, in myself.  Just as I need Faith to hold me together, I need hope to push me forward.

Making it a mission to treat hope as a verb, I choose to actively cherish my desires for the future with anticipation.  Spring is here.  It’s the start—a rebirth from seeds of hope.  I must cherish this moment.  This place.  This time.  It knows no bounds . . . you can never overstay Hope’s welcome.

Rejoice in hope, be patient in tribulation, be constant in prayer.  ~Romans 12:12