Tag: Cancer

The Swollen Truth about Lymphedema

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

tumblr_inline_n1ioynYRmV1rx5ep5

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

Sailing Strong in the Winds of Affliction

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

Adversity is the diamond dust Heaven polishes its jewels with.

Thomas Carlyle 

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

A Year of Cancer through the Eyes of a Child

Colby

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

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

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

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

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

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

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

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

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

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

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

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

–Colby

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

Heather Von St. James: A Beautiful Voice in the Wilderness

by Seaglass4Nicole, posted in Noteworthy Articles

Dandelion

Purposefully Speaking Loud & Clear on the Lost Voice of Mesothelioma

Because … Hope will never be silent

It’s time now to roll up the pink carpets of breast cancer awareness month … and set our sights on WHITE.  November is National Lung Cancer Awareness month, bringing critical attention to the leading cancer killer in both men and women in the United States.

I was blessed and honored recently to be contacted by Cameron Von St. James—a hero in his own right … who humbly and passionately takes on the roles of Husband, Father and passionate mesothelioma advocate for his beautiful wife, Heather, as well as countless other victims of this deadly disease.  Cameron invited me to join him on his mission to share their divine family story of hope in the face of this so often overlooked cancer.

The truth is for many people—white ribbons this month represent the very real reminder and sting of experiencing lung cancer either firsthand or through watching a loved one on the front lines battle or even lose his or her life to lung cancer.

Strictly speaking, the “color” white is not really a color at all, but rather a manifestation of the presence of ALL color—the complete power of light.   My earnest hope is that the powerful light of education will shine bright on the face of lung cancer not only for the month of November … but all year.

What is Mesothelioma?

Mesothelioma lies hidden under the lung cancer “umbrella,” often a lost form of cancer—though deadly.  The cancer cells of mesothelioma can involve the lining of ANY organ, but the typical site tends to be the lining of the lungs.  Tragically, mesothelioma is among one of many cancers that is still considered incurable.  It’s associated with exposure to asbestos—a deadly carcinogen that is sadly, still found in many structures built before its ban by the Environmental Protection Agency in 1989.  Even small amounts of asbestos and/or infrequent exposure can create a risk for contracting mesothelioma or other asbestos-related diseases.

Heather Von St. James was just 36 years old when she was diagnosed with pleural mesothelioma—just three short months after giving birth to a beautiful daughter, Lily Rose in 2005.  Heather and Cam sought treatment at Brigham & Women’s Hospital to undergo a groundbreaking surgical procedure with the goal of delivering the best possible outcome.

Today, Heather is an eight-year mesothelioma cancer survivor and a keynote speaker at conferences all over, in addition to social media platforms … where she thrives on providing continuous support and inspiration to mesothelioma victims around the globe.  Her story is one of hope, faith … and love.

I invite you to meet Heather Von St. James—a beacon of light to so many afflicted with mesothelioma.  Please join her mission by sharing her story with others.  Pouring hope and light through shared education and support is strong advocacy in its most indispensable form.

“With hope, the odds don’t matter.”  ~Heather Von St. James

Watch Heather Von St. James’ Courageous Story Now.

Taking Flight

by Seaglass4Nicole, posted in Beachcombing My Way through Breast Cancer

Red Balloon

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

Hermann Hesse

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

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

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

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

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

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

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

Loads of Love … in hope,

Nicole

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

2 Timothy 1:7

Sponge Diving Our Way to Authenticity

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

The Sponge Diver

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

Henry Ward Beecher

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

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

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

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

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

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

Nicole

 

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