I know right? Can you believe it? December 12 marks ten years since I was told, “Unfortunately, you have cancer,” and 5 years since I began the blog. When I began writing, my intent was to explore (and work out in my busy buzz-buzz little noggin) the trauma and heebie jeebies of living in that precarious space that is the first five years after breast cancer. Writing, I found, was like letting the steam off a pressure cooker. Bit by bit, week by week, with each new post, the pressure lessened and the intense push of emotional junk in my brain against my skull ceased.

After Five Years in Cancerland, I indeed, had accrued a hoard of emotional junk. A friend politely said after listening to my weepiness, “Jesus girl, you have a LOT of stuff rattling around in that head of yours.” Indeed it often felt like ALL OF IT MIXED TOGETHER–a crazy aunt in the attic- a banshee screeching senselessly as she wandered.

Writing, it turned out for this scattered and exhausted looping mind, turned out to be one of those Major Organizer ladies. She efficiently walked in and stopped the hoard in its tracks. She spent weeks thoroughly sweeping through all the junk drawers, sucking the dirt out of the nooks and crannies in my brain and tidily putting things various marked boxes. Labels, like “Thigh Cancer” and “Cancer Fatigue” emerged, and it became easier and easier to toss things in where they belonged, as I wrote and wrote.

Emotions and crazy thinking were released like bags of trash to the universe, a week at a time.

And then something more magical happened. Salve for wounded places in my heart and brain came back to me, as I listened to the songs and echoes of my blog sisters in Cancerland in comments each week. My readers, mostly Cancer chicks, sat patiently with me each week (like those nice psychologists do on hoarders) as I picked up each item, one item at a time to sort.  They quietly waited as I turned stuff over  and over in my hands, and listened to what it meant to me. They heard my reluctance to deal with it. With no shaming, and in so not judgy way, they helped me dig through my trash—helping me chose what to keep, what to trash, what had value, and what to donate to the universe. I am eternally grateful for those who sat with me through that tedious sort, and for those offered labels when I had exhausted all those my wee brain could muster. “Twang arm” and “Grumblers for the Cure” being some echoed back.  I wrote and wrote each week, until finally the looping stopped as I was finally, out of gas.

I credit those women for getting me to After Ten Years. One would think the second five years would be easier to cope with and keep organized…but I am here to tell you that there are still so many lessons in that space of still uncertain, but not quite as uncertain as the first five years, space.

But I have lived.

I have lived to see things I literally begged God in the dark of the night on a pillow wet with tears, to live to see–proms and graduations and homecoming dances, just the day-to-day life of teenagers and kids fledging from the nest. I have lived to see the joy on my wee ones faces for 5 more Christmases and 5 more birthdays. Disneyland, San Francisco, Niagara Falls….are all now off the bucket list.

I lived to see losses great and small. I have lived to lose the most important people in the world to me– to death, and in other intangible ways. I have lost my dad and my beloved Scout the Wonderdog, and while not rocket science that people and dogs don’t live forever, it is still deeply sad. But I am glad I lived, to hold their hands and paws, as I walked them home.

This last year, the year I was sliding into year ten, has turned out to be worse than Cancer. Yet, I find, I have now lived my way into perspective. Because I lived, cancer has been talked down to size; an itty bitty dot on the horizon behind me at times. See, I once thought (like say, five years ago) that Cancer was the worst thing, the hardest thing, the cruelest thing that ever happened to me. My handy yardstick, attached to my hip, used to be, “Well, it’s not Cancer.” That yardstick has been replaced now. I am glad.  Cancer is not the worst thing that can happen to you, losing your Pop and sweet, sweet dog in a month are, as are losing people you love in other ways. But still, I lived through it. I am lucky.

I lived on and learned how, even after ten years, cancer and PTSD still change to this day how I deal with illness– in anyone, dad, dog, friend, myself or my kids. How “illness” still has the power to flip that switch, to set off old familiar alarms and anxiety and make me kind of cray-cray. The smell and feel of hospitals is overwhelming to me still, stealth, like carbon monoxide seeping into my cells.  It’s invisible to others, but inside the medical doors I am in constant anxiety; feeling sick and dizzy. I have lived to learn that even being put on antibiotics, being around someone with a bad cold freaks me out, as do routine doctor visits. Thigh cancer also still looms in the rear view mirror, bouncing around in the back seat like an unruly kid, sticking its tongue out at me from time to time.

I have lived into the wisdom that PTSD is worse when anxiety robs sleep. It is completely paralyzing when I am on the losing end of the battle. And it rears its ugly head as I insist that ALL BE DONE to help, because I realize at one time, I was a lost cause and had I not insisted that ALL BE DONE to kick my cancer, I would not be writing this.

After ten years, I have learned a big lesson though. To forgive myself for the cray cray.  As far as other people forgiving me, not so much, but that’s understandable and okay. A veteran recently said to me, “I don’t have PTSD, I earned my PTSD.” I don’t know that anyone can or even should be expected to understand the nuances and horrors of however you earned yours and how it shows up–which makes it mine to navigate, not theirs. I won’t beat myself up for it leaking out here and there. New cracks develop as you age and LIVE, like wrinkles on the skin.

I have realized too, that gentle and kind people recognize it for what it is and catch your tears (even though they are sometimes caustic and burn smoky holes through their hands.) They will still hold you in their now holy hands; a blanket of warmth as their words surround you like a nest. I have lived to see how lucky I am. In blogging, I heard a chorus of, “You too? Gosh I thought I was the only one.” And that is helpful. It makes you feel less cray-cray.

I have lived on these last five years, to feel the cognitive dissonance of recognizing how lucky you are, being juxtaposed with depression.  How can a person who survived cancer be depressed for God’s sake? But I have lived on these last five years to feel so beaten down at times by life– the very life I begged God to let me live. I would be a BIG FAT liar if I didn’t admit that coming off this year, I was often plagued with thoughts of “Why go on?’ when everyone I loved died. This creates quite a fucked up dichotomy in your head, when you have been given the gift of more days, and now feel like they don’t matter, or are too painful to endure. But I have lived through this too.

See, we always think about and bargain with god about the fabulous things we want to live to see when we are diagnosed, but forget we will live through these hard things too. I am grateful to have lived through both.

I have lived to find inside me an endless font of compassion, created by the tears I have cried. I am less judgy of others, realizing fully for the first time very deeply these last years, the walk in the shoes thing. I reach out more. I always was built this way, but now, it bubbles out to the tenth degree. This empath has become even more empathic, and better so, even more empathetic. I am glad that I lived to have my edges smoothed, and to have lived my way into laser clarity about why I am here.

What else?

After ten years, I have lived to reflect and realize how much people did for me in that space and time, to see not just how cancer affected me, but others.  How kind people laid their bodies down to make bridges for me to walk on through cancer sewage, so that I can be here writing this. I get weepy when I think about how much my Pop did for me; he was my Wingman and my North Star. I am standing, fully and solidly, physically and mentally, because of him. In the quiet of my house, I weep too, when I remember a friend who saved Christmas. I have lived now five more years to decorate at Christmas with sock snowmen made when she arrived, bringing in her bags of joy to a house of a single mom with two wee little kids where cancer came knocking, blowing its toxic black smoke over everything that sparkled, just two weeks before Christmas.

I have learned that in the first five years, life is lived with a wide-angle lens, capturing a whole lot more than you would normally capture. Statistics dictate that there is a valid need to capture a bigger picture in those first five years and that is not necessarily a bad thing.  But in the next five years, I have (mostly) gone back to living life with a normal lens. Yes, I still have a perpetual colored filtered lens that makes ALL things more vibrant, but life is more normal in scope.

Cancer offers less permission these days. In the beginning, Cancer was quite manic and reckless as it yelled, “Go ahead do it! You don’t know how long you have!” Nowadays, cancer shrugs its shoulders and says, “It seems like a great idea, but don’t do it on my account.”

Cancer is less of a taskmaster. Where once my life was lived with weekly chemo for a year, shots to myself in my bathroom, surgeries, daily radiation and endless re- check appointments…now we are whittled to once a year where the Big Guy (my oncologist) is thanked annually for saving my life. And I while I get a little cray-cray at those visits, cancer doesn’t rule after ten years.

I sleep soundly now.  In the first five years, it was routine for Anxiety to jab its gnarly finger at me until I woke up yelling, “What? What is it?” for it to yell with its windy, halitosis-y breath, “CANCER, THAT’S WHAT!” Now, occasionally, it wakes me and whispers “cancer,” and I say, “Oh that’s all? Go back to bed, monsters aren’t real.”

I have learned that after the first five years of recklessly driving the car, CANCER has now acquired operative equivalent highway hypnosis. Its eyes drift shut periodically, nodding off as life moves down the highway. But at times, admittedly, just when there is sound sleep, its eyes snap wide open, re-righting the car back into the Cancer Lane. But mostly, after ten years, cancer has finally moved to the back seat Some days, I don’t even see cancer in my rear view mirror, and suspect it has even moved to the trunk. Some days though, there it is in perfect focus, as I glance back; it sticks its tongue out at me with its arms crossed, sullen that I don’t engage it anymore.

I have lived to fully grasp that what Scout the Wonderdog tried to teach me every day of his life was so very true–that you don’t have to be whole to be whole.  That we aren’t what happens to us, we are what we make of it.

I have lived into wisdom, becoming wise to the Wiley Coyote ways of cancer with its anvils and bombs. Cancer has simply become one of the many, many merit badges on my sash. It has been lived down to size. I have lived to gather more badges, infinitely harder ones to earn, since then. Perspective comes with years of survival.

The point of all of this is that I have lived. Something I never thought I would do literally (or figuratively) after the initial “all clear” was given.  I never thought I could mentally live life again, and have moments of joy again where Cancer wasn’t photobombing an otherwise idyllic moment.

Cancer hasn’t died, but has finally hibernated. Cancer has mostly left the building that is my head. Five years ago, I wondered if that would ever happen. I am happy to say that reports of cancer’s death in your head after ten years, have NOT been grossly exaggerated. Years ago, I wrote a blog called Outlive It. It didn’t mean outlive the cancer and survive, it meant, outlive the ability of cancer to haunt you, to define you. I have, after ten years, outlived cancer.

I have lived on to notice in every moment, the feel every last drop of life on my skin. Still after ten years it is there. That feeling it. In a speech at a college commencement called, “This Is Water”  David Foster Wallace tells the story of two goldfish swimming along, and an older goldfish coming upon them saying (to their confusion), “How’s the water boys?” I feel the wet every day. The water is life that is not taken for granted.  After ten years, I am still wet. That never goes away. This is a good thing.

But what next? This year, sliding into year ten, I suddenly realized that I only had a ten-year plan. That I never got beyond “seeing my kids graduate and not leaving wee children motherless.” Both kiddos are launched now into life plans. I never dared to consider life after ten years, perhaps thinking I would jinx it, and after all, I only asked for ten.  I saw a quote today I love, that perhaps will be my motto from here on, “You didn’t come this far, to only come this far.”

I don’t think of these last ten years as a journey, but as an adventure…where initially I burst out of the gates like Carl and Russell in the movie Up, with the mentality that Adventure is Out There!  My adventure began ten years ago, and continues, even after ten years. Life remains definitely sweeter. Every minute and second is still recognized and given its due honor as something I could have lost. Something I am damn lucky to have. As something I get to do, not have to do. In the first five years I felt a little like Russell—now I feel like Carl. Wise about what was given to me, wise about the need to keep looking forward to what will be, instead of getting stuck in what was, and in what happened to you.

Indeed, I have come so far after ten years, and still have many more to go, because after all,  I did not come this far, to only come this far.

Thanks for listening all. You all have become my adventure, and my world.

(My dad passed away on February 23…this was his eulogy)

A couple of weeks ago, after endless weeks of setbacks and difficulties and trials, my Pop told me this story. He said there was this farmer who hired two little boys to do some work. Their first job was to move a huge 8 foot tall mountain of manure. The first little boy dejectedly picked up a shovel and was crying as he shoveled.

The second little boy ran up and quickly picked up his shovel. He started shoveling away, eagerly, scoop and after scoop with excitement and a big smile. The farmer looked at the kid and said, “What the heck are you so happy about?” and the kid looked incredulously at him and said, “With all this poop there has to be a pony in here somewhere!” Classic Howard, I know.

A few days later, I was trying to encourage dad through yet another setback, and said, “Look for the pony Pop, look for the pony.” He said, “You know Lauren, I am starting to think I might find a zebra in all this.” This of course launched one of our discussions about life, and about how answers and gifts don’t always show up looking like you want. And that sometimes what we find, is even better than what we ever imagined.

Our conversation, this joke, highlighted that wonderful thing about my dad, his eternal optimism and humor, his belief that we must always hope for, and actively look for, the positive. He said a thousand times these last weeks when encouraged about outcomes, “I hope so, I hope so, I hope so.”

I believe my Pop has found his zebra.
.
My brother Tom, also noted last week that it is in adversity that someone’s true character reveals itself. When we see how they conduct themselves when their chips are down, when they are in pain.

Dad had lost his left side. He knew deep inside he would never golf again. But even when faced with adversity, Classic Howard remained class act. Indeed, it is what our family saw in my dad throughout the last months and days that confirmed really, what we already knew about him our whole lives. That he was one heck of a guy.

When nurses, or Sheridan or any of us would do the smallest gesture for him; he said, “Thank you.” Even on the day he passed, as people were doing things to make him more comfortable, still it came out, that kind and now soft and gentle voice, “Thank you.”

He remained concerned with how his illness had impacted others, telling Jenna he was sorry he missed most of her 5th grade year, telling me over and over how worried he was that Sheridan had sat for hours with him on a folding metal chair every day, and expressing concern about us coming to visit when there was bad weather. He was insistent that we send Olympia chocolates and get vouchers for golf lessons to the nurses in the ICU in Baltimore. Classic Howard.

About 3 months ago, dad was lying on a gurney in pre-op in Baltimore, ready to go in to get a PEG tube put in. It was quite a serious procedure actually, and we had asked Father Colin to call and pray with him before the procedure. Father Colin nicely said a prayer over the phone as we held it to dad’s ear, and we waited quietly for a response from dad. And dad blurts out, “Fr. Collin we still are going to organize a St. Mary golf tournament and I bet I can raise 25K for the church the first year!”

Classic Howard was always, and remained about the other guy; about what you can do for the other guy. About gratitude, being considerate, and manners, and humor, and kindness.

How lucky we his kids were, to be the “other guy” our whole stinking lives.

He called me a few weeks ago in the middle of the night and announced, “Lauren, I decided that even though I may never be half the man I used to be, half of me is good enough and I will be grateful and take it.”

He quoted endlessly of late, a line from an old John Irving book, “This can’t change the me in me.” And it didn’t. The stroke, and age really, never stole a single ounce of the Howard in Howard. And every time he repeated that line to me, I thought to myself, “Thank God, thank God. Lucky us.” Because having just “Half the Howard” still left us all… way ahead of the game.

My brother Tom called Dad “The George Bailey of Hagerstown.” So the astonishing part to all of us through these last months, was witnessing his internal struggle, not with the stroke and losses with it, but with the thoughts that I suppose we’ll all have as we sense we are in our sunset years. “Did I lead a good life? Did I do the best I could with this life? Was I a patient and good father? Could I have done more?” Those nagging questions baffled us because they seemed to convey that he didn’t grasp what an astonishingly good life he had led. Not just as a friend, or a husband, or a civic leader, but to us, as a fantastic dad.

It wasn’t until my long drive home to NC that I realized what it was that those questions really highlighted. It occurred to me that it is only a truly, humble man who sincerely asks those questions. It’s not that he wasn’t sure that he made a difference; it was that it was always so important for him to always challenge himself to do better or more, so much so, that those questions never went away.

It is no secret that I think my Pop hung the moon. The depth of our relationship now resonates in a lyric from his favorite show Les Mis. As Marius sings, “You would live, a hundred years, if I could show you how.” And Eponine replies, “And you will you will keep me safe…and you will keep me close…and rain, will make the flowers grow.”

It wasn’t that my dad was perfect or that he never did anything wrong-he would be the first to tell you that. His honesty about his own flaws was a lesson in itself.

But he got an awful lot right. He taught us how to handle the hard stuff and take inventory of our actions. But most of all, he taught me the quite-perfect lesson that life is easier when you look for ponies, and happier when you understand that rain, does indeed, make the flowers grow.

That’s classic Howard. He’s the guy who told his kids, “Keep your eye on the donut and not on the hole.” The guy who reminded us over and over, “That turtle didn’t get on the fencepost by itself.” The guy who nudged us to always, always take the high road. Classic Howard was the guy who told us repeatedly as kids, “I would cut off my right arm for you;” and the guy who played endless games of Monopoly to I suspect, teach us investment strategies.

He was the guy who threw endless bags of baseballs to my brother each night to teach him to pitch. The guy who turned jump ropes for hours for me, and the guy who talked cancer down to size for me, sometimes twice daily for 42 weeks. He was a guy with an innate gift for knowing what we needed to feel loved and nurtured and supported and cherished. And he did those things, every day of our lives. We had the happiest of childhoods, and that gift, has lasted us a lifetime.

My Dad absolutely adored the Legend of the Starfish. His favorite part of the story, the closing line, was a line we heard him say many times in our lives, “Well, it made a difference to this one.”

My dad was a man who walked the beaches of life and with every single step forward, paused to fetch a starfish, and with love, toss as far as he possibly could out into a new life. When others might be too busy moving forward, dad actively kept his head down seeking them. Yes that slows your forward movement in life, but gosh does it improve the width of your life. Even in his last days, I witnessed him bend to pick up, the last lucky starfish.

He liked to say he still had it in him to change one more life for the better. Everything he did, it seemed, was about making a difference for just this one. It was about big things, like adopting the apple of his eye Jenna later in life. It was about stopping what he was doing to talk, whenever we kids needed advice or solace, and tossing us out to where we could swim and breathe again.

It was about making a point of choosing to play golf with the people who really needed partners. It was about helping someone solve a financial problem, or giving someone a mulligan, or signing up to volunteer for United Way board at age 81. It was about quietly and anonymously saving someone’s dignity. It was about teaching other men to fish, and feeding them as they learned. Giving buoyancy. It was about jumping right in and shoveling with a smile to help someone else, find their pony.

It was about always reaching, to change one more life for the better. That was our dad. That, was classic Howard.

I was a starfish. Pam was a starfish, Tom was a starfish. Jenna was a starfish. The grandkids were all starfish. We feel so lucky.

So, I am going to ask you now, if you were a starfish, if you knew of one of his starfish, if you were taught to fish, or touched by Classic Howard in some way….If you were one of the ones he was talking about when he said, “Well it made a difference to this one”…I will ask that take a moment, and think of him, and lift him up now, as we walk him home.

This week Marie, from Journeying Beyond Breast Cancer attempted to stoke us bloggers who had fallen into a blogging funk. Her “Mojo Monday” writing prompt: “If you could have an hour on a bench with someone from the past, who would it be?” I will admit, I saw the prompt and thought, “Oh come on now, give me more than that!” But then, here and there, my thoughts began to roam. “If I was to write about this,” I mused, “What would I say?”

Of course without a doubt, the person I would pick would be my mom. But my read of the question went beyond the who it would be, to wondering, “How would I spend that hour?”

My mom died when I was 30; she had just turned 60. The events of her death punctuated immediately for me what my life would be like from then on; an empty space in a pew in the front of the church. Always, forever, an empty space where she was supposed to be. For 22 years now.

You hear people kvetch about their moms; moms interfering in their adult lives, moms telling them how to parent. So you need to understand that my come-from is absent this peripheral view. I did not have many years to grow into an adult-adult relationship with her. No, my vision tunnels into a wonderful childhood and memories of this unbelievably supportive, nurturing mom. She was so loving and fun–naturally emitting the things that feel and taste like love to a kid; undivided attention, magical Christmas seasons full of traditions, the smell of food cooking after school, waiting at the bus with me on really cold days, baking, crafting and giving hugs for no particular reason.

Things I realize, now as an adult, are my infrastructure; the stuff my bones are made of.

So, I can’t imagine that if she had lived she would have ever been bossy about my kids or negative about my life choices. I imagine that she would have been simpatico on my parenting and quite supportive in fact, but I really don’t know.

My mom got diagnosed with cancer three weeks before I was to be married. We cancelled the wedding without a second thought, as she was to have surgery that would keep her in the hospital for several weeks. And besides, who wants to get married without their mom there? The wedding was pushed out six weeks, after being assured by the docs the new date would be a safe bet post-op. Yet, she died suddenly 3 days before the new wedding date and I found myself instead on that day, standing in a cemetery in Western Maryland, burying my mother.

So from the get go, the big hard stuff of adulthood has been done without her-with her inside me and watching over me, but not physically here. My wedding, childbirth, postpartum exhaustion, colicky babies, unanticipated divorce, cancer and chemo, job loss and even now with the sharp painful loss that takes you down after putting your best out there as a person and parent and lose.

I am certain that all the good stuff has happened under her watch as well-wonderful trips with my kiddos, special Christmases where we repeated her traditions, and the successes my kids have experienced. Oh yes, I am quite certain she has giggled along with us in those magic moments that we three have shared and that further, she had a hand in them-too many inexplicable good coincidences have happened in our lives to believe anything other. I know she has cried and cheered and prayed and felt proud with me and has delighted in my kids every step of the way. I know this because I knew her heart and what made it delight…as she knew mine.

So, on this bench, given an hour with her, I wouldn’t feel the need to catch her up because I truly believe she is caught up.

Perhaps it is because of where our relationship was when she died, but I think in that very parent-child, selfishly lopsided way, I would only need something from her; to simply be held and hugged. For just one hour, to absorb like a little dried out and forgotten sponge, 22 years worth of unspoken, absolute and without-a-doubt assurance that I am lovable and am loved. Loved unconditionally despite my foibles and faults.

What I have craved since she has been gone is the very sure feeling that I am not alone in this world and that I am believed in. I have ached to feel her steadfast belief in the goodness of my heart’s intent without having to convince her as I have to do with others, because she knew it as real from its infancy. I have weeping sore places that need her salve, her mothering, to calm the questions that have looped endlessly in my head for 22 years now- Am I a good mom? Am I a good person? Why is life so hard? Why did all these things happen?- -the weighty, adult worries that only a mother’s unconditional love can vaporize when she hugs her 52-year-old daughter, even if just for an hour.

To be for an hour, simply, a child who is loved by her mom.

So maybe Marie, the person from my past I would also want to sit with for an hour is actually me, that child like me who felt so loved and sure and cherished. But of course, it would take two people to make that happen.

Just one person? I am sure Marie, you can give me more than that.

“I love the kind of hugs where you can physically feel the sadness leaving your body”

Anonymous

Of note, this post was in response to the Keller’s negative op-eds regarding a breast cancer survivor tweeting her cancer. It is a tongue in cheek letter to them, regarding the topic of blogging/tweeting about your cancer.

Read the rest of this entry »

Yesterday, after a fantabulous and snuggly and insular holiday with my kiddos, I was riding in the car with my sweet Amelia. She said, “Mom, can you believe next year you will have a junior in college and a junior in high school…doesn’t that make you feel old?”  I hesitated, considering that she was now old enough to know my true answer. “No,” I said, “Because years ago when I got diagnosed with cancer, honestly, they weren’t really sure I would make it. I prayed to live to see these things come to pass. Yes, I know lots of people who complain about getting older, but not me, because everything I get to live to see is a bonus to me.” Read the rest of this entry »

Imagine if you had a sweet, little cozy house. You tend it well, doing all you can to keep it all pretty and quaint. While it’s not the house you imagined yourself owning, you have found yourself loving it; loving the simplicity of it. Outside you have planted a yard chock full gardens for all things to grow, all surrounded quaint little white picket fence. Read the rest of this entry »

Yesterday, I was in T.J. Maxx with my wee one and she wanted a flat-iron. She selected one, describing it to me as “a breast cancer flat-iron.” I told her I would buy it if she could find anywhere on the box that it said the money raised with this pink-ribboned wonder went to research. She read the cheerful synopsis on the box out loud, explaining all that her purchase would do for breast cancer. It ended with the word that makes my skin crawl, “awareness.” Read the rest of this entry »

You know, you’d think that after about 7 years you would have your hands around something and have regained some semblance of control. There you are walking along, your cool-collected self, sticking your toe back into the cancer pool. A thing of the past it is, the trauma now seems manageable. While not always nonchalant, you can begin to at least chitchat casually about the experience of cancer without totally losing your cookies. Read the rest of this entry »

Read the rest of this entry »

I have had a wretched six months or so; actually almost a year now as a friend gently reminded me last week. It was good of her to do so, as I had lost track of my wallow and it is time to get on with it. Read the rest of this entry »

Follow

Get every new post delivered to your Inbox.

Join 186 other followers

%d bloggers like this: