Riding the Wave

girl-surfer

(transferred from my CaringBridge site created on 3/9/13)

“Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.”

~ Helen Keller

It seems like “chemo-Thursdays” always falls on a birthday or holiday.  This past Thursday was my birthday and it was wonderful to have some ultra-special people with me:  my mom and my sister in addition to my three little princes.  As per normal, we livened and lightened up the infusion floor . . . birthday presents and all!

Tired of the cold and feeling a touch of Spring fever (even during the lovely chemo-induced fatigue and allover malaise), I’ve been busy thinking about warmer thoughts . . . like surfing.  I love watching surfers being challenged by huge waves.  To the ordinary swimmer, like myself, being in the midst of such a wave would frighten me to the core.  To the seasoned surfer, however, that same wave is precisely what produces their tremendous thrill.  Many of you may remember “soul surfer,” Bethany Hamilton, who in 2003 at only 13 years old, while relaxing on her surfboard waiting to catch a good wave—in a split second, lost her arm from a great white shark attack.  Amazingly, this talented, faith-filled girl got right back in the water, surfing with one arm—less than a month after the attack!

Thrill-seeking has always been the subject of much speculation, from Sigmund Freud’s “innate death drive” philosophy to some modern psychologists’ view that dangerous activities make us feel more alive.  In reality, though, thrill-seeking behavior can mean different things to different people.

Though I still have a bit of a risk-taking drive in me, I’ve grown more conservative over the years—especially as a mom . . . in a way hoping that my boys will not completely follow in some of my crazy footsteps.  John will laugh while attesting to some of my craziness, like on the slopes.  From the moment we started skiing together, even as a beginner, I would hit the slopes—racing to the finish, often times on trails I had no business being on.  For me, it’s all about the thrill and challenge, and ultimately the whole experience in the moment.  I guess most people will both seek and avoid risk at different points in their lives.

Now if my slope were instead replaced with that ultimate wave, a surfer’s dream . . . I’ll be honest, I’d be running for the hills.  Cancer, in many ways . . . has become my wave.  I would love to run far away from it . . . or simply remain in the still waters.  Some people will say of one going through a cancer trial as “brave.”  I laugh when people say that to me because the truth is bravery is about the furthest from the truth in my reality.  A firefighter running into a burning building is what I envision as brave.  I would do anything to run far away from this, not toward it.

Though Bethany describes that tragic morning on her surfboard as her Tsunami moment, infringing on her pro-surfer dreams, she also realized that bad things happen to everyone.  “But for me, knowing that God loves me and that he has a plan for my life—that no shark can take away and no contest result can shake, is like having solid rock underneath me.”  Wow . . . what an amazing young woman.

I desperately seek to apply the same thrill-seeking behavior I’ve often sought in life to meet me on this latest adventure—the very wave I would love to avoid and fight against.  The truth is, tribulation, suffering, and persecution—are the very things that produce abundant joy in us.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.  James 1:2–4

God tells us that trials produce perseverance . . . perseverance produces character; and character brings hope, which never disappoints.

I’m on the board, ready to put my sights on the wave before me.

Thank you my friends for your constant prayers.  My regular chemo-Thursday will be changed to Friday this coming week as I meet with my oncologist to further examine the lymph node at the base of my skull.  Please continue to pray that this is nothing.

I in turn will:  Rejoice in hope, be patient in tribulation, and be constant in prayer. (Romans 12:12)

Mastering the Keys with Precision

piano keys

(transferred from my CaringBridge page from 3/5/13)

One good thing about music, when it hits you, you feel no pain.

~ Bob Marley

This weekend, I had the distinct privilege of experiencing one of my favorite jazz pianists and composers—Joe Sample.  Working with the likes of Miles Davis, B.B. King, Eric Clapton and George Benson (to name a few), Joe incorporates jazz, gospel, blues, Latin and even classical style into his amazing compositions.

Jazz.  There’s something about listening to it that brings such peace to my spirit—in many ways like a deep soul massage.  Just thinking about Joe Sample’s music relaxes my shoulders.  I’ve always found the best musicians to have a distinct sound that can easily be discerned from the ears of a true fan, even if you were blindfolded.  Sample could play a simple melody like Chopsticks on the same Yamaha as hundreds of other pianists, and still have it sound incredibly unique to him.  At one point during his performance, he talked about all the painful hours he has spent exercising his fingers.  He continued to share that the exercises were not about how well he could execute an entire piece of music, but instead how well his fingers landed on each key.  The precise placement of his fingers touching each key—determined the kind of sound only he can produce.

This past week was tough.  No sugar-coating . . . it was exhausting, trying and demanding of all my focus and energy.  “Mental drain” sums it up well.  In a moment during the week when my spirit seemed too weak to think let alone pray, it brought priceless encouragement to see one of Colby’s scriptures on my mirror:  “Cast all your anxiety on Him, because He cares for you.”  (1 Peter 5:7)  Because He cares for you.

I was doubly blessed to have my mom join me on Thursday for chemo.  While we were able to have some great one on one time, I was also able to share some of my struggles with her.  Though I can’t imagine the intense pain a mother must feel having a sick child with no way to fix it, my mom always encourages me while also allowing me to have moments of weakness, moments of human frailty—without going into meltdown zone because of my lack of optimism.  Though people don’t mean to communicate additional stress, often a sick person feels pressured with an expectation to be perpetually positive.  “Stay positive” is the mantra of choice.  The mentality behind the saying is sensible and wise, yet with it comes the added anxiety of probable failure.  Instead, my mom listens earnestly, never discouraging me from expressing honest pain.  She’s the perfect best friend/mother combination—loyal, unconditional, honest, loving and true . . . never letting me sit in worry and confusion, but also never dismissive about my feelings.  I thank God every day for her.

Sometimes we put our Faith in full compositions, instead of individual key strokes.  I often find myself busy praying over the big picture instead of the smaller, intricate steps that would be easier to hit with ease and precision.  I need to exercise my Faith the same way Joe exercises his fingers . . . not on a mission to perfectly execute my ballad of sorts.  Instead, the crux of this composition laid out before me is about the way my fingers graze each key.

I recognize that every step along the way of this trial is going to be difficult, even unbearable at times.  If I look too far down the road, it will be easier to falter.  Instead, I need to look at the placement of my feet, one step at a time . . . trusting the Lord’s lead.

“Faith never knows where it is being led, but it loves and knows the One who is leading.” ~Oswald Chambers

This week marks week 9.  Almost ½ way there!

 

A Tumultuous Privacy of Storm

snowed in

(originally posted on my CaringBridge page on 2/12/13)

Announced by all the trumpets of the sky, arrives the snow, and, driving o’er the fields, seems nowhere to alight:  the whited air hides hills and woods, the river, and the heaven, and veils the farm-house at the garden’s end.  The sled and traveler stopped, the courier’s feet delayed, all friends shut out, the housemates sit around the radiant fireplace, enclosed in a tumultuous privacy of storm . . .

~ Ralph Waldo Emerson (An excerpt from the Snow-Storm)

There’s something so romantic and nostalgic about being snowed in . . . the privacy and cozy isolation—blissful.  Yet in all the beauty that the endless blanket of heavy snow creates, like many things, it can be deceiving.  While many of us were comfy-cozy, bundled up by a radiant fire, watching the storm blow around outside . . . sadly, there were many people tragically hit by its force—some lost homes, while others even lost lives.

“Nemo,” apparently the name weather folk chose to call this blizzard of 2013, seemed an ironic choice to me.  After all—how does a blizzard of “epic proportions” get named after the Latin word for “nobody”?  How can something so big and powerful be a Nobody?  Nothing?  Null and void of existence?  Goliath, perhaps . . . but Nemo?  I guess, though, just like the very meaning of blizzard—sometimes a blinding series of unexpected, and often times, unpleasant occurrences find us along the way.  Life’s little nothings that come out of nowhere, turning our world upside down.

As you know, my “Nemo” of epic proportions decided to blow in around Christmas, disrupting my little corner of the world.  Just as this past weekend proved, in the midst of an epic storm, time seems to almost stand still.  Blizzards seem to force people into slowing down, allowing no excuse to be in a rush to go anywhere.  In a sense, they bring people together.

Late Friday night, in the darkness, as the winds were gusting and the electricity began flickering off and on, I wondered what would be waiting at the break of dawn.  Soon enough, when Saturday morning emerged, there it was:  a whimsical winter wonderland—decorated with over 2 feet of snow.  It sat heavy on the trees and in some parts of my backyard, appeared Narnia-like.  As I stood gazing at the sweeping “white” all around us, I suddenly gasped and winced as I noticed a massive oak had fallen from the neighbor’s yard through a fence into our backyard.  Ugh.  As time seemed to stand still in the allure of tranquility . . . very real destruction actively existed in the darkness.

What else will materialize from the wake of this epic storm named Nobody?  The aftermath of a blizzard sometimes doesn’t reveal itself until the snow melts—then a trail of surprises are left behind.

Will my personal “Nemo,” my tumultuous privacy of storm, leave a trail of dark surprises, or will it leave a lasting impression, a forever imprint on the hearts of those its impact has touched?  Will I one day be sitting back, recalling my blizzard of epic proportions as a life-changing moment of clarity?  A point in my life where time stood still and through its pause, my eyes were open wider to the real treasure all around me?

When the snow melts, I pray that my heart will urgently align with all that really matters . . . the Love that surrounds me . . . the “forever” treasure I wish to store for purposes beyond this miniscule stop along the path of eternity.

But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.  ~Matthew 6:20-21

 

He Remains

Ngong Hill

(originally posted on my CaringBridge page on 2/4/13)

Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever.

~ Isak Dinesen (Karen Blixen)

After Thursday evening, I’ve been thinking a lot about Isak Dinesen and Out of Africa.  It was prompted by a conversation with my dear friend, the precious “Nana” Lynne who I was privileged to have accompany me to Dana-Farber last week.  Without fail, my time spent with Lynne always begins and ends in laughter, fun and a whole lot of love.   Thursday was no exception.

Lynne is no stranger to Dana-Farber, recently completing her chemo sessions for a rare lymphoma, known as Waldenstrom’s Disease that she has been living with (symptom-free) for over 5 years.  Her unshakable Faith and desire to be where God is at work, is like a breath of fresh air on any given day, but gracing me with her presence during my treatment  . . . was an extra-special treat!

I hadn’t realized until we arrived, as we got out of the car in Boston, how very boring my repertoire of comfort must-haves for a potential 10+ hour day at Dana-Farber were.  My chic, (weak) “Big C” tote—as I refer to it, was no match for the swanky “ride” Lynne rolled out of her backseat.  Any and everything you could need resided in her little slice of heaven on wheels . . . from cross-stitch to techno-savvy equipment and everything in between.  I knew, if I was missing anything, it was IN that bag.

The great part of the day came with my little rainbow in the sky during the oncologist appointment.  The clinical research nurse met with me first, who reminded me that though I’d be examined by the oncologist, there would most likely be no change in tumor size until at least 6 weeks of treatment.  When my doctor came in, we discussed lab results etc., then she, too reminded me that typically we can only expect a softening of the tumors at this point, but not much more in the realm of size reduction.  As she started feeling under my arm, she was taken aback by the change . . . noticeably smaller nodes.   Once she started examining my breast, her eyebrows went up and she looked completely puzzled.  These were her words:  “This is a REMARKABLY different breast than our last visit—practically unheard of after only 3 treatments.”  I cried.  My words to her were . . . “That’s the power of Prayer!”   In the waiting room, I celebrated the news with Lynne and we practically ran to the infusion area for chemo . . . “Bring on the juice” was our little anthem!

Lynne’s Mary Poppins’ bag on wheels didn’t disappoint as she got her game on with some fun.   We were going through some conversation cards while waiting to be called in for chemo, and one of the questions had something to do with naming a movie that you can’t forget, one that left a lasting impression somehow.   Though I love movies and could list many favorites . . . the first movie that came immediately to the forefront was Out of Africa—something I haven’t thought about it in a long time, but it hasn’t left my mind since.  I laugh because I seriously woke up Thursday night with the echoing remnants of my dream . . . “I had a farm in Africa, at the foot of the Ngong Hill.”  Ahhh, Nicole’s movie moment.

I understand the film was rich in every way, enticing the senses with the amazing African scenery and passionate drama . . . but what made it leave such an impression on my heart?  Knowing that the film was loosely based on the real life of Karen Blixen, better known under the pseudonym, Isak Dinesen, added a definite intensity to the story.  Then there’s her brilliance . . . a gifted writer, who had an amazing, earnest craft in storytelling.

The main impression that resonates with me, however,  is that like many of us, Karen Blixen put a lot of value in her “things” . . . she actually had trouble separating herself from them.  Yet, in the end, she was left with nothing.  Everything was stripped away.  I think of how often I’ve based my own joy, even my identity on things.  For some, being without a smart phone for more than an hour may send them into withdrawals.   Then there’s the vanity.  Will I still find joy when my hair is gone?   My breasts permanently altered?

Today, we shaved my head.  It was time.  I’ve been shedding more than Miles and the anticipation of losing it, coupled with the heightened tenderness of my scalp—every strand of hair feeling heavy, tugging on my head, made it an easy decision.  John was my Barber, with additional assistance from the boys—they were thrilled to participate in the process, each having a go with the razor.  I cringed a bit, when they were smelling my hair as it came out, talking about how much they loved the smell of my hair and how they’d miss that.  It was tough, but my head feels much better, and the “anticipation anxiety” is over.

Isak Dinesen wrote:  “But by the time that I had nothing left, I myself was the lightest thing of all for fate to get rid of.”

Are we weighted down so much by the things of this world, that in the end, we are but the lightest? When all is gone, what remains?

Lynne and I had a funny but very real divine appointment as I was being infused.  We got a knock on the door from the interfaith Chaplain.  This sweet girl was blown away by what we shared with her.  We talked about our joy in the midst of our trials, though difficult.  She seemed fascinated, unable to leave . . . even taking little notes.  By the end of chemo, we pretty much had to send her on her way.  We had to laugh as we marveled, knowing without a shadow of doubt, God called us to respond and share with this girl . . . her intent to reach out to us, in turn allowed us to reach out to her.

I pray wholeheartedly that I may be so unshaken in my Faith that I will stand firm . . . ready and willing to lose everything, with the blessed assurance that the very thing that matters most will never leave nor forsake me, on this side of heaven and beyond.  He remains.  In the end, when all is stripped away, He remains.

 

Nina Speaks . . . and I’m Feeling Good

Nina-Simone

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

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

~ Nina Simone

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

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

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

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

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

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

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

Staying Gold in my Winter Season

Stay Gold

(originally posted on my CaringBridge page on 1/26/13)

Seize upon that moment long ago … one breath away and there you will be … so young and carefree … again you will see, that place in time—So Gold

~ Stevie Wonder

Being a music lover . . . everything from Gospel to Jazz, there are certain songs that move me in a way, releasing a level of intimacy in the core of my soul that is hard to even express in words.  When reviewing a discography of a magnificent legend like Stevie Wonder, it’s difficult to find one song that doesn’t move you at some level.  However, one of his least “famous” songs moves me in a way that few songs ever have or will:  Stay Gold.  The song was originally written for the memorable Francis Ford Coppola movie, based on the coming-of-age novel by S. E. Hinton—The Outsiders.

Michelle joined me on my trip into Dana-Farber this week, and let’s just say . . . we livened up the joint—double trouble in the infusion room, (pretty typical of any outing we undertake together).  We were our naughty selves . . .  laugh-crying in hysteria over things that certainly lightened the heaviness of the environment.  I was blessed.  She was my little slice of Gold in the moment.

I guess my love for Robert Frost and his brilliance kept me company all week, as I pondered yet another poem from memory that always visits me from time to time over the years . . . Nothing Gold Can Stay.

Nature’s first green is gold, her hardest hue to hold.  Her early leafs a flower; but only so an hour. Then leaf subsides to leaf.  So Eden sank to grief, so dawn goes down to day.  Nothing gold can stay.

Ahhhh.  The poem may read almost depressing at first glance, but in fact . . . though the delicate, early golden leaves of spring will turn green, spring turns to summer, dawn will turn to day, youth becomes maturity . . . you can still hold on to the wonder, the “goldenness” of memories and moments, staying gold through each season’s changes.  We will find a blessed increase if we embrace the cycle of flower, leaf, bud, fruit—into the full life that includes loss, grief, and change.

…for I have learned to be content whatever the circumstances.  I know what it is to be in need, and I know what it is to have plenty.  I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through Him who gives me strength.  ~ Philippians 4:11-13

This is my season of change . . . a winter season where the gold of spring may seem buried, but I can still ponder and reflect on all that I’ve been blessed with.  I have truly learned to be content only in Him who gives me strength.  When my content takes a downward turn to sorrow, I need remember to Stay Gold.

. . . Life is but a twinkling of an eye yet filled with sorrow and compassion . . . though not imagined, all things that happen will age too old—Though Gold

Miles to go Before I Sleep

Woods

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

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

~ Robert Frost

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

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

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

<sigh>

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

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

(Jeremiah 29:11)