I Hope…

A Letter of Love to My Sons on Mother’s Day 

Motherhood: All love begins and ends there.  —Robert Browning

my loves

Boys,

Earlier this week I got a notification from Shutterfly that made me literally gasp. As I read “Look what we found for you. Remember eleven years ago?” I scrolled down to see your beautiful faces from one of our many memorable Nantucket vacations…so many years ago. My heart skipped a beat. For a moment I felt that anticipatory sensation on a roller coaster that typically comes right about midway up the chain lift of the biggest hill. You know—when the visual cues of what’s about to go down physically lead to that sinking stomach feel only to be amped-up while going full speed ahead down that amazing hill.

Time has gone by SO fast. It’s overwhelming.

When each of you came into this world, I was in awe of your miraculous perfection and couldn’t believe that God had entrusted each of you to me. It is truly an overwhelming privilege and joy to be the mother of three spectacular boys that God so perfectly knit together in my womb.

From your first steps to your first missteps…I’ve been your biggest fan and supporter. You honestly never stop amazing me. With every milestone each of you have reached so far, I’ve reveled in joy and celebration.

As you continue to grow and thrive, I’m in awe at the amazing young men you’ve become. You each have your own unique personality, your own thoughts and opinions, and your own crazy sense of humor. I embrace the individual uniqueness that makes up Colby, Logan and Lance. I am blessed and honored to be part of your lives—you’ve all undeniably taught me the meaning of true, unconditional love.

Years ago, when I gave you the book and keepsake CD—I Hope You Dance—I prayed that each of you would grow to understand the deeper meanings of these lyrics, and perhaps when you did, I would know that I’d done the best job I’ve been entrusted with—as a Mother.

My prayer remains…

I hope you never lose your sense of wonder

Psalm 65:8—The whole earth is filled with awe at your wonders; where morning dawns, where evening fades, you call forth songs of joy.

I’ll always pray for each of you to be satiated with His perfect plan for your lives. But even when you’re “full” I want you to still hunger and thirst for personal growth. Never stop pursuing your dreams or become complacent where you are. Live a life that has meaning and purpose.

Don’t forget to take it all in. There’s beauty everywhere…sometimes you just have to look a little harder. Don’t become jaded. Instead look for freshness in all that you do so it never grows mundane.

I hope you still feel small when you stand beside the ocean

Philippians 2:3-4—Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others.

First and foremost, may you always know your worth and how incredibly precious you are not only to Him but to me. As your mom, it is my privilege to impart these important truths to you. Throughout your life, always be humble—never having an inflated ego. While I always want you to be confident, humility is even more important. By remaining humble, you are open and receptive to improve. A humble leader is secure enough to recognize his or her weaknesses so growth can take place.

I hope you dance

Jeremiah 29:11—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.

Don’t be afraid to take (prayerful) risks in life. You can often accomplish great things by taking risks. Get outside of your comfort zone, never letting insecurities hold you back from taking a chance. There’s nothing worse than saying…I wish I didn’t stay on the sidelines when I had the opportunity to be part of something bigger.

Whatever you do…don’t take life too seriously. Have fun. Laugh often…even at yourself when you make mistakes. Don’t worry about things you cannot control. Enjoy life to the fullest…and dance.

I hope you never fear those mountains in the distance

James 1:2-4—Consider it pure joy, my brothers and sisters whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

Struggles and other hardships are an inevitable part of life. Don’t let the challenges of tomorrow consume your “today.” It is often in these hard climbs in life that we learn and grow—making room for future opportunities to help and encourage others going through something similar. Ceaselessly pray on the climb, pray once you reach the top and continue to pray when you’re over the mountain and coasting along on the other side. Pray. Pray. Pray.

Promise me that you’ll give faith a fighting chance

Hebrews 11:1—Now faith is confidence in what we hope for and assurance about what we do not see.

God’s handprint is on each of you. Never stop striving to see Him—as He’s always there seeking for you to draw close to Him so he can draw closer to you and encourage you each day.  Never lose the wonder of who He is and what He’s doing around you. Allow your uniqueness to shine through. You never need to change who you are for someone else. You are magnificent exactly as you are.

Time is indeed accelerating—even faster than the biggest drop on our favorite roller coaster. While I want to freeze so many moments and not let them go…I know that I need to make room for so many more to come.

Thank you, boys for always being the reason for my smile at some point in every day.  While I know I can be tough and am FAR from perfect as a mom, I thank God for this gift of motherhood that is both overwhelming and beautiful. Know that I love and adore each of you…always and forever. *Don’t ever forget the words of my favorite book—you know…the one that makes me ugly cry—I’ll Love You Forever by Robert Munsch. Even though I don’t sing it to you anymore (insert sad face), the words will always be true:

“I’ll love you forever…I’ll like you for always…as long as I’m living…my babies you’ll be.”

Love,

Mom

XOXOXO

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The Butterfly Effect: “13 Reasons Why” You Should Take a Closer Look at this Series

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It has been said that something as small as the flutter of a butterfly’s wing can ultimately cause a typhoon halfway around the world.

People who know me well, know I’m not one to jump on the bandwagon of any snake oil trend society is selling to make me feel more “progressive” as a human being. However, when the widely controversial 13 Reasons Why Netflix series came to my attention recently—first through my daily news feed—then as an important “Emotional Communication” from the schools, I knew I needed to take a closer look. The closer look for me came in the form of binge-watching 768 minutes to get me to Hannah Baker’s 13th reason why she killed herself. Yes, it’s true…if you don’t already know…the central character in this series is a young teen who takes her own life. While that sounds like something you’d rather run far away from, I implore parents to join me on taking a “closer” look. Because no one—not one—is immune.

At its core, 13 Reasons Why is a realistic exploration of the profound impact our interactions have on others. Our words, actions, tone—even our availability to one another—matter. Matter a lot. While it’s true that we can’t always determine who is struggling inside, we can certainly be sure that everyone struggles at one time or another. For teens, entering middle and high school means an increasing amount of independence, when many of them look to friends instead of parents for guidance. The fluctuation of teen hormones and the undeniable pressure to fit in with their peers, not only clouds the judgment of vulnerable kids, but can easily make them more susceptible to risky behavior.

As a parent of three boys ages eleven to fifteen, I stand firmly on the well-known scripture “Train up a child in the way he should go; even when he is old he will not depart from it” (Proverbs 22:6). To that point, I vigorously pray that on this parenting journey, I do my best to guide them effectively—supervising the right choices—because as a deeply flawed human being, I know full well that when temptation and opportunity meet, something can always go wrong.

13 Reasons Why examines a number of ways our kids encounter the crossroads of temptation and opportunity, and I won’t sugarcoat it—it’s very difficult to watch. The unyielding look into particularly difficult topics including depression, rape and suicide also make it a very important show to watch—especially if you have teens in your life that you care deeply about. Please don’t ignore these uncomfortable truths.

Here are 13 reasons (in no particular order) why we need to keep the conversation about these difficult topics alive:

#1—Your Kids Aren’t Living in a Bubble

“No one loses their innocence. It is either taken or given away willingly.”
–Tiffany Madison

While we’d all like to think of our kids as little pillars of excellence and innocence, sheltered from the scary realities of this ugly world, the truth is they aren’t. In fact, while we want desperately to protect them from anything bad that could come their way, without them understanding the dangers that may lie in wait, it would impossible for them to be a light in the darkest places. Knowledge is power.

It’s best to open a dialogue with your children about this particular series because unless you’re living in an ‘old order’ Amish community or North Korea, where technology is forbidden, chances are your preteens and teens have heard about it or have already perhaps binge-watched it without you. While the series is ABSOLUTELY too intense and graphic for children under 15 years old to watch, it still opens up a great opportunity to discuss social themes and situations with a younger, preteen audience, including the consequences of  bullying—without carrying the heavy burden of the show’s violence.

For my 15-year-old son, I think it is very important we watch the show together and/or explore difficult themes so that, even if he doesn’t encounter these issues personally, he can be a voice and light for those that do.

#2—Mistakes are Part of Life

“Failure is instructive. The person who really thinks learns quite as much from his failures as from his successes.”
–John Dewey

We all make mistakes. In fact, there are times when we think we’ll never recover from our mistakes. For teens, who are still physically and mentally developing, it’s easy for them to find it difficult to see beyond the mistake and the consequences that come with it. Teaching our children (and ourselves) how to practice grace and forgiveness is so important for those friends or loved ones in our lives who may be watching us to model our behavior.

Teach your kids to view each mistake as an opportunity to learn, grow and potentially…teach others.

#3—Bullying Wears Many Disguises

“Never do a wrong thing to make a friend–or to keep one.”
–Robert E. Lee

The children’s rhyme “sticks and stones may break my bones, but words will never break me” was a blatant lie. Words can—in fact—break one’s spirit.

Bullying occurs every day, in every school. Yes, I mean every.  So if you think you’ve placed your child in a Christian or other private, “sheltered” environment to avoid this…you’re in denial. While it’s easy to identify the prominent effects of a fist fight, the subtleties of bullying range from hurtful gossip to emotional attacks, to social media harassment. Regardless of the disguise it takes on, bullying is destructive.

I laugh when I hear parents of toddlers, gently telling them things like “use your words,” because the truth is, often the wrong word can create irreparable damage to one’s integrity. Talk to your kids about the destructive power of words and how one otherwise, “innocent” comment or suggestion can put a permanent mark on someone’s reputation. Just as importantly…open up a dialogue with your child to make sure help is sought if they are a victim of bullying.

#4—The Power of Social Media Can Leave a Trail of Destruction

“Distracted from distraction by distraction”
–T.S. Eliot

Don’t lie to yourself, we are all distracted by social media. One of the things I tell my boys all the time is: when you take part in social media of any kind, you’re leaving a permanent digital footprint, one that can help or hinder your future. Having the instantaneous ability to send or receive information—and disinformation—can lead to just as instantaneous, even devastating consequences. Remember the Public Service Announcement from the 70s and 80s: “Do you know where your children are?” While it’s easy to think we’ve got the lowdown on everything going on with our kids when they’re with us in the home…it’s 2017 folks—so unless you’re shadowing their every virtual move, do we really know where our kids are?

Our crazy world treats social media like a reality TV show. Because of that, our youth have less self-esteem and less of an ability to sustain themselves through adversity. Teens see themselves through a reflection of pixels…with Snapchat photos and Instagram posts dictating their identities.

When you take one look at the opioid crisis facing our nation right now, it’s easy to see the connection between the “virtual” numbing we do with our feelings through social media to the physical numbing some do with the rampant availability of drugs like heroin. Young people are increasingly becoming strangers to real feelings. In many ways, social sites like YouTube, Twitter, Facebook and Snapchat have become the popular drugs our teens are overdosing on…every single day.

Do you know where your kids are?

How often do you talk to them about their social media use? Do you know which accounts your child uses? Do you have access to the content they see daily? Remember, ignorance is dangerous.

#5—Kindness Matters

“Kindness is a language which the deaf can hear and the blind can see.”
–Mark Twain

Kindness wins every time. When in doubt, don’t hesitate to opt for kindness. Every. Single. Time. I don’t like my boys using the word hate…because we should teach (and model) the fact that we should never hate anyone, even our “worst enemies.” Everyone has something good about them (even it’s like digging through 70 tons of muck to find it). Find the redeeming quality and love the person for that. Always remember a smile or a hello could make someone’s day…perhaps even be the one happy point that gives someone the hope or encouragement they need. Imagine if your smile gave someone the courage to reach out for help? Make a difference…every day.

In one of the final episodes of the series, the main character, Clay says to the school counselor:  “It has to get better, the way we treat each other and look out for each other. It has to get better somehow.”

Imagine if we all did just that…would the world still be so dark?

#6—One Authentic Friendship is Far More Valuable Than 10 million Facebook “Friends”

“The truth is, everyone is going to hurt you. You just got to find the ones worth suffering for.”
–Bob Marley

People always disappoint. It’s a given. The sooner we come to terms with that fact, the more time we’ll have to start improving our own character flaws. Authentic friendships are the “gems in the rough” of relationships which have the power to save lives. Seeking deeper, trusting friendships instead of popularity, allows you to be yourself with ease. Having an authentic friendship allows you to not only notice changes, struggles and out-of-character behaviors in that person, but that person can notice changes in you too—which can be lifesaving. When we are vulnerable, others feel comfortable to be vulnerable too. Encourage your children to make meaningful connections with their peers—letting authenticity guide the way.

#7—There’s Wisdom in Going With Your Gut

“Trust instinct to the end, even though you can give no reason.”
–Ralph Waldo Emerson

Teach your teens to trust their instincts. When they find themselves in a situation that doesn’t feel right or look right, change course. If someone’s behavior concerns them or seems off, teach them to not be shy to ask or seek help with compassion.

I encourage my boys to pause and pray when they feel that gut instinct kick in.

#8—Create an Atmosphere of Love and Trust

“Parents can only give good advice or put them on the right paths, but the final forming of a person’s character lies in their own hands.”
–Anne Frank

For my boys, roughly 10 hours of every day is spent on a bus, in a classroom or on the field for sports. Combine that with sleeping and homework and that’s a lot of time during the week without active family communication. So while I need to trust and pray that they are making good decisions when they leave the house in the morning, we as parents need to make the time we do have together count.

It’s easy for a teen to lose a sense of comfort when communicating with you if they know that anytime they open up they will be met with the third-degree. Be open, so they’ll feel comfortable to do the same. Don’t get me wrong…I am definitely not saying we need to create a more laissez-faire relationship when it comes to discipline with our kids, but teens need to know that talking to you and advocating for themselves will be met with love and respect.

If your child was being bullied in school, would he or she feel comfortable telling you? What if they were sexually assaulted? What if your child made a terrible mistake, one that might even be illegal, do you trust that he or she would confide in you? Remember, our kids are watching our responses to our own struggles and missteps. I’m preaching to myself when I say: be your best self for your kids. Admit your mistakes in front of your kids, so they see that it’s okay to share and discuss our imperfections.

#9—Turning a Blind Eye to Underage Drinking and Drug Use Has Deadly Consequences

“We are only as blind as we want to be.”
–Maya Angelou

It’s never okay to allow underage drinking and drug use…regardless of the liberal viewpoints you hold dear. Rationalizing substance use and abuse with things like, “They’re going to drink anyway. They might as well do it at home” is a poor excuse for parenting and simply WRONG. Condoning illegal (and potentially addictive) behavior puts children at risk for SO many things. Let’s face it, even adults under the influence make bad decisions. Turning a blind eye to the illegal drug and alcohol use of (still-developing) teens puts them at a heightened risk of hurting themselves and others.

#10—Your Identity Should Be Rooted in Faith, Not Peers

“Be assured, if you walk with Him and look to Him, and expect help from Him, He will never fail you.”
–George Mueller

Teens need to root their identity in something stronger than their reflection or their peers. While the world is full of counterfeit truth claims, the most important thing you can teach your teen is choosing God’s reality rather than fake versions of reality.

Teaching your teen how to discover what it means to live out their faith is a lifelong journey as we integrate what we believe with every area of life…including middle and high school. In my house, we feel it’s imperative to help our boys understand that God is personal and desires to reveal His truth to them. Prayer, scripture, church and meaningful discussion help provide the necessary tools to let them know that He communicates with us all the time when we acknowledge His powerful presence in our lives.

#11—There’s Value in Positive Interactions with Others

“All positive interactions with other human beings involve, to some degree, the experience of visibility– that is, the experience of being seen and understood.”
–Nathaniel Branden

It is important to encourage healthy interactions among peers…in the classroom, on the basketball court, and even through our technology screens. We all want our children to associate with kids who will have a positive influence on their lives, and obviously we want them to stay away from those who will do the opposite. Make an effort, to support their peer relationships by giving them unconditional love, time, boundaries, and encouragement to think for themselves. Above all, get to know their friends…what their interests are, where they live, etc. While you don’t have to stalk the families, casual conversations around the dining room table on a Sunday night may spark more insight.

No matter what kind of peer influence your teen faces, he or she must learn how to balance the value of going along with the crowd against the importance of making morally-based decisions.

When the only interactions for your teen come in the form of screen time through video games, Twitter, Snapchat, Facebook and Youtube, your kids will never achieve the level of interaction necessary for real communication, connection, admiration, or respect. Encourage them to be involved in healthy extracurricular activities that give them a break from the fake realities society wants to sell them.

#12—Don’t Shy Away from Talking About Sexual Assault

“No” is a complete sentence.”
–Anne Lamott

Raising Princes in a Pauper society (as I like to say) is no easy task, but should certainly be every parents’ goal. Bottom line, we need to be intentional in our parenting. While I want my message as a parent to inspire my boys to return God’s love with a lifestyle that loves Him, we have to invest the time and attention to model the right behaviors ourselves, so that we become the muse to instill that message. Let’s face it, none of us are perfect—despite the fact that you may try to convince the world otherwise on Facebook.

“Sex talks” are not nearly as important as crafting a lifestyle for our children that leads them naturally into making the right choices that produce good consequences. Just as we teach our children the importance of proper hygiene and how to brush their teeth, sexual health has to be part of an overall approach to wellness. One thing should always be crystal clear when talking about difficult subjects like sexual assault. We need to instill the message that it is never acceptable…ever…for one human to force his or her body on another human. Say it often…and then say it again.

#13—Suicide is the Second-Leading Cause of Death in Teens

“When people kill themselves, they think they’re ending the pain, but all they’re doing is passing it on to those they leave behind.”
–Jeannette Walls

Suicide is the second-most common cause of death among American teens ages 15-19. While suicide itself is not a mental disorder, it is a leading cause of death for people seriously affected by mental illness including Depression, Bipolar Disorder, Schizophrenia and Substance Abuse Disorders. When Hannah’s spirit becomes absolutely broken, she begins to embrace the emptiness of not feeling anything at all. While life’s under no obligation to give us what we expect, hope exists and it’s stronger than anything coming against you. Sadly, talking points on mental illness cannot cause someone to “snap out of it,” instead, it’s watching for indications of depression and hopelessness that can prompt medical treatment to restore one’s hopefulness of life.

The warranted controversy surrounding the suicide scene in the series was too painful to watch…and I closed my eyes for part of the scene. It was too real. But don’t we need people—maybe those who have become so desensitized by society’s temptations—to see and acknowledge the horror of taking your own life?

There is nothing…I repeat NOTHING glamorous about killing yourself. While there is much controversy over the thought that the show romanticizes suicide, personally, I didn’t walk away with that message. I wanted to. I wanted to be enraged by yet another senseless Hollywood drama instilling more notions of violence and hatred in our kids. Instead, I walked away with the simple fact that Jay Asher, author of the book leading up to this story writes:

“Everything…affects everything.”

We are all part of that everything and need to be accountable for the affects our interactions have on the everything we touch in our lives.

When our teens are equipped with the right tools, they can combine their gut instincts with some basic, but distinct warning signs to spot if a friend or school acquaintance may be at risk for suicidal or depressive thoughts:

  • Hopelessness
  • Rage/anger
  • Acting reckless or engaging in risky activities
  • Feeling trapped (like there is no way out)
  • Increasing alcohol or drug use
  • Withdrawing from family/friends/society
  • Agitation or intense anxiety
  • Dramatic mood changes
  • No reasons for living/no sense of purpose in life

According to the American Association of Suicidology, a warning sign is the earliest detectable sign that indicates heightened risk for suicide in the near term (i.e., within minutes, hours, or days).

The Butterfly Effect…

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conceptualizes the theory that even the most subtle and unobtrusive change effects other things, which build upon each other, and may eventually result in a massive change, which for some, would be quite unexpected or even tragic. In the fictional story of Hannah, the cumulative effect of the actions of others and her inaction to seek further help resulted in her tragically choosing hopelessness.

The Butterfly Effect is one of the most important reasons to believe that a single life can have a profound impact on the world. It’s really our call to action. 13 Reasons Why makes poignant points about what we owe one another as humans. Let’s make our daily actions and interactions become the Butterfly Effect for change by altering the tapestry of the world in a positive way.

Even the smallest step one takes in his/her life can change the course of said life immensely.

Gioie della Tavola

Tuscany

For Italians…the dinner table always serves as reminder that we’re connected to each other and to life itself.

Evoking feelings of nostalgia isn’t a hard task. One scent, one picture…or even one smile can drift you back to that sentimental place or time in the past. After a recent conversation with my Mom, I took a little nostalgic journey back in time, back to a period in my childhood where the “Council” existed. The Council, as it was known, was a regular gathering at my Great Aunt Rita’s house—made up of mostly Italian women—who would congregate around a large dining room table and talk and talk…and talk (usually in debate-style) about life, love, family, politics, memories—all while naturally being encouraged to mangia, mangia over the Italian yummies laid out before them (and yes…I can recall the redolence of anisette in the air from those fresh Italian cookies).

When it comes to Italians or Italy, let’s face it, the first thing people usually think of is the warmth, joy and utter magic created around the dinner table. It’s well known that Italians are accomplished in the gioie della tavola, or “the joys of the table.” In fact, the dinner table is one of the most steadfast images and emblems in Italian art—celebrated in our paintings and films, from the Renaissance to present day.

If you were an outsider looking in on those gatherings of the council, you’d likely be dizzy with confusion—because just like many large Italian families, all gathered around that table would not only talk at higher than normal decibels, but also all at the same time…and don’t forget the hands, which also spoke volumes. But it was there at the table, where hearts would open, and life’s greatest celebrations and sometimes even dramatic battles would unfold.

We all seem to crave time that will create nostalgic memories, like our winter bones crave the warmth of summer. Time with family. Time with friends. Time to reconnect to oneself. Just. More. Time. Yet the irony comes during the week when all we wish to do is speed that time up…a magical fast forward to Friday, where the challenges of the week can be left behind.

For me, with work and school dominating our days, and homework, sports and activities dominating our evenings, there often seems to be little room for creating memories as a family around our dining room table—but they’re a necessity. My boys crave “family nights” in the dining room during the week and they always become the high point of any day. There we connect. We laugh. We pray. We share our struggles and joys…and ultimately we strengthen the bonds of love and friendship.

There aren’t many members of that beautiful Council left on this side of Heaven, and though the table is still there in my Aunt Rita’s house, all you can really see is what is not there anymore. I guess a table is not simply an object in a room, it’s the people gathered around it that bring it to life.

Time is short and precious. Embrace more moments in gioie della tavola…appreciating the magical synergy that is created when the joys of conversation and intimacy commingle with the pleasures of amazing food and drink.

“What must be broken apart in order to bring a family close together? Bread, of course.”

The Swollen Truth about Lymphedema

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Lymph–what?

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

So what exactly is it?

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

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

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

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

So lymphedema has joined my world. Permanently.

Now What?

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

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

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

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

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

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

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

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

Side Effects to Side Effects? Really?

russian-nesting-dolls

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

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

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

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

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

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

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

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

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

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

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

Suffering in Silence

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

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

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

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

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

Lymphedema Resources

Books:

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

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

Websites:

National Lymphedema Network, lymphnet.org

National Cancer Institute, cancer.gov

Smiling from the Valley of Shadows

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

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

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

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