Tag: Chemo

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

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 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

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

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 

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

Nina Speaks . . . and I’m Feeling Good

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

Nina-Simone

(originally posted on CaringBridge on 1/28/13)

Birds flyin’ high you know how I feel . . . Sun in the sky you know how I feel . . . Breeze driftin’ by you know how I feel—It’s a new dawn, it’s a new day, it’s a new life for me, and I’m feeling good.

~ Nina Simone

Feeling Good is one of those cool songs that when you’re feeling really bad, it’s got medicinal properties to pick you up and when you’re feeling really good, it lifts you up higher.  Nina Simone always executes that powerful cry for freedom in her music that just shouts . . . Whatever this world throws at me I am still blessed and refreshed because this world can’t take away my inner freedom.

This week marks week 4 of chemotherapy . . . only 16 more weeks to go.  There was actually a faint, initial excitement typing the word only until I looked at it a second time . . . then suddenly my mental energy was completely focused on the word – more.  The focus shifted to:  “What?  16 MORE weeks to go?  Seriously?”  In truth, this is the easy part of the journey, so I will stick with my optimistic sing-songy attitude “YAY, only 16 more weeks of chemo!”   Actually, let’s scratch sing-songy and go with raspy-jazzy-Nina-Simoney.  I’m Feeling GOOD.

In terms of side effects—overall, my body has done very well so far.  I have heard horror stories and read of people who really fight a brutal battle with the nasty side effects of these life-saving poisons.  Therefore, I try not to focus too much on my trivial physical “ailments”— as I’m aware it could be so much worse.  In short, I have had moments of extreme fatigue and many more moments of abdominal pain and malaise, but no signs (yet) of neuropathy in my fingers and toes which I’ve been instructed to “expect”—a numbness and tingling that often makes certain tasks more difficult.  As for my hair situation, my scalp has become very tender, sort of like that feeling I used to get as a little girl when wearing my hair in a ponytail all day—once that elastic came out at the end of the day, it was sore and tender to the touch.   This sensation, so I’ve been told, is the forboding of hair on its way out.  It has been gradually thinning a bit . . . mostly showing up in the shower, but nothing unmanageable or overtly noticeable.  I’ll know when it’s time to shave the head, and will make no bones about embracing the buzzer when the moment does present itself.

Another newer, more pronounced side effect I’ve had going on . . . joint pain.  I know people who struggle and suffer with debilitating forms of joint pain, including Fibromyalgia and rheumatoid arthritis.  My heart breaks for those living with thisdaily and I truly sympathize—what must be torturous day in and day out.  Now I’m not suddenly claiming to be an expert in pain by any means, but feel there is a tiny part of me that can trade my sympathy for literal empathy.  Though I have not walked a mile in the shoes of people in chronic pain, this past week I’ve experienced a noticeable, constant sense of joint pain.  One night, mid-sleep, it came out of nowhere and almost felt like there was a little sledgehammer banging by bones from my shoulders down to my feet—a little demolition taking place throughout my body.  The thought of people living with this constantly, makes my life look like a walk in the park on a perfect day.

Saturday marked exactly one month since my official diagnosis.  If I sit on that thought too long, recalling that day . . . it’s quite possible that the neuropathy I spoke of may actually be starting in my brain—a numbing sensation that still grazes that fine line between fiction and reality.  Is this all just a dream?  Unfortunately the answer would be a flat out:  No.  But fortunately, I know my summer’s on its way.  John Steinbeck wrote it perfectly in his book, Travels with Charley:  “What good is the warmth of summer, without the cold of winter to give it sweetness.”

In the meantime, during my cold days of winter, I can say like the Psalmist, David who trusted God beyond anything else . . .

Your righteousness, God, reaches to the heavens, you who have done great things.  Who is like you, God?  Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. (Psalm 71:19-20)

Miles to go Before I Sleep

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

Woods

(originally written on my CaringBridge page on 1/22/13)

 . . .  The woods are lovely, dark, and deep, but I have promises to keep, and miles to go before I sleep, and miles to go before I sleep.   

~ Robert Frost

Sleep.  That simple 5-letter word, wildly underestimated until you’re getting very little of it.  Sleeeeeep.  Often something I’ve been reluctant to do, but don’t want to stop after I’ve started.  Lately, sleep has become that simple yet complicated word that’s constantly on my mind . . . especially during the hours that I wish I were visiting its happy, sleepy place.   Oddly, it is during the moments of heavy fatigue, an exhaustion I’ve never experienced before, that sleep is so desired—but not found.

Growing up … and maybe even in recent days . . . certain music often puts me into “movie-mode” (Michelle’s roaring out loud right now, because only she totally gets what I’m talking about), when the music becomes a background score to my own life soundtrack.  As kids, traveling on long road trips, we would be in the back of the car, with our headphones on, dreamily glancing out the window—the music bringing us into our individual, private utopia.  Tonight, I went there—movie-mode . . . only instead of music beckoning me into my movie, it was the peaceful blanket of snow lingering on the trees out my back window that became my life’s score.  It was beautiful.

There I was, “Stopping by the Woods on a Snowy Evening”— trapped in a Robert Frost poem.  The outward simplicity of this 16-line poem brought so much depth to my movie moment.  Like the narrator, lately I find myself often yearning to linger in the quiet solitude of isolation . . . the darkest night, watching the snow fall.   In the poem, only through the resounding bell of the horse’s harness, does the narrator finally get jolted to remember the many promises he has to keep . . . miles to go, no time to give up.

<sigh>

Thank you, Lord for reminding me of your promises.  I choose hope, knowing that I have many miles to go before I sleep . . .

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.    

(Jeremiah 29:11)

 

Waiting to Shine in the Break of Dawn

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer

Dawn

(originally posted on my CaringBridge page on 1/10/13)

However long the night, the dawn will break.

So I’ll lay out the first news of the day:  I am not receiving the clinical trial drug that would have worked in synergy with the standard chemo.   Yes I know… deep sigh. Cringe.  Let’s just say, if I was a gal who actually believed in luck (which I’m not) … it would be tough waking up each day without getting struck by lightning through my bedroom window!

Though we have been actively hoping and praying that I would hear different news today, I honestly have peace right now.

After the biopsy, as John and I made our way to meet with the oncologist and research team (to learn my status following computer randomization), I looked at him and said … the truth is, I tell myself I have been praying for God’s will be done, but my prayers and desire on this issue have really only been to GET the drug.  I need and really want His will to be done in this.  Believing means knowing that His way is best — period.  So these results really don’t matter, in His grand scheme.  So we both individually prayed for this the entire time we waited.

The oncologist called us in and we were still waiting on the research nurse to join us with results.  We talked about what to expect with my first infusion while she thoroughly examined me.  I’m thrilled to have her on my team.  The research nurse came in and after introductions, I couldn’t help myself.  “So?… was I picked in the randomization?”   She opened the chart (already knowing, of course) and almost sympathetically said, “No, you are in ‘Arm B’ of the trial, a participant in the smaller percent who DON’T get the drug.”  I paused, smiled and said, okay, we knew that was an obvious possibility.

The oncologist looked at me and assured me that this news does not negate the fact that I will be getting the best, most aggressive treatment…further reminding me that this trial may prove to not be effective at all.   I nodded, grateful for her encouragement and then glanced over at John’s face.  When you’ve been best friends with someone as long as we have (almost 19 years), you can’t help but feel what the other is feeling.  He hurt for me.  I then glanced again at the research nurse … silent and sympathetic, and cried for a minute.  Honestly, it was just that … a moment of releasing the coveted desire I carried for the last week and then just like that, relaxed, feeling a real peace that passes all understanding.  It wasn’t meant to be for me.

The oncologist left, as we continued chemo discussion with the nurse.  We then learned the bad news of the day—the trial stipulations did not clearly lay out the hidden fact that the next biopsy needed to be scheduled within 48 hours!  There I sat, ice in my bra, still black and yellow from the biopsy on the 21st of Dec.  Now further swollen and achy, they’re telling me I need to do this again in 2 days.  Let’s just say John in “protective-mode” was NOT a happy camper.  This really wasn’t clearly discussed nor written anywhere in the paperwork I signed, so we expressed our concern and overall disappointment with the added inconvenience and general misery this would bring.   After all, Thursday’s trial conversation had instead confirmed 2 weeks after my first infusion, the obligated biopsy needed to be done.

Anyway, John needed to chill out and I said let’s just deal with it and move on.  The nurse felt bad and wanted to further investigate.  Needless to say, while grabbing breakfast in the cafeteria, my oncologist frantically found us and said she was so upset at the vague details of the trial, that she formally complained, and pushed the biopsy off until next week (giving me a little extra time to heal).  Yay.

I also LOVE my chemo nurse.  We really connected! He’s great … fun, yet serious and filled with knowledge and answers.  He will hopefully be my guy for the duration.  John and I were happy with his attentiveness and compassion.

I pretty much avoided thinking about chemo until he hung the bag and was ready to start.  I already had a double dose of Benadryl via IV (which had a “burn-a- hole in my vein” feeling, apparently a normal sensation for many).  This was given in case I was one of the “anaphylactic shock” cases (lightning striking).

When the taxol was ready, I got an overwhelming feeling of anxiety.  I didn’t anticipate that reaction at all.  I think for a brief moment in Benadryl groggyville, I became that “gal believing in luck” and given the recent life events, assumed I would be the rare one to code on this drug.

Ahhhh, but no.  I am not that gal and the treatment went well, as I caught a long overdue nap with a lovely heated blanket.  It did its thing, and the nurse gave me a thumbs up and wink at how well I did.

Treatment one:  Done.

Help me, dear God to remember that challenges and heartache are perfect opportunities for my hope in you to shine . . .