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 »
Last week, I found myself on the receiving end of a big, fat, loud “Pshaw.”
I guess Pshaw is what you call it, that’s what it sounded like at least. An exasperated sigh plus eye roll; an unspoken, “Oh brother, give me a break.” Read the rest of this entry »
Halloween is a coming and it’s time for ghosts and goblins and all the spooky stuff that makes you quiver and quake! (I mean of course beyond the onslaught of bone chilling pink neon of October reminding you that A) you had cancer and B) there is still not a cure, but I digress.) I’m a pumpkin carving, costume making girl myself; a girl not too keen on hard-core horror shenaniganry. But it is Halloween and I realize some people enjoy that edgy fear that is brought on by terror and fear so, if you are NOT one of those thrill seeking people, this blog is not for you. And for you adrenaline junkies out there who crave a little foray into dark crevices of a psychological thriller, I won’t disappoint.
Follow me to a place where anxiety whips you around the craggy corners and “What Ifs” taunt you as they dangle from the trees like sinister Spanish moss come alive, waiting to grab you with its gnarly fingers. Let’s go to a place where cesspools of bubbling yuck abound, spewing slime on you as they percolate endlessly. In this little House O’ Horror, you’ll find that the unexpectedness of the path is the worse part, cause one second you are on the Pleasantville train all safe and buckled in, and the next you are hanging out of the window as it careens over a cliff and you holding on by your fingertips. Ghosts from the past whisper warnings of death, wrapping around you like a filmy, wet covering of doom you can’t wipe away and skeletons jangle their bones in a rhythm that is hauntingly familiar. You run, but you cannot hide.
You my dear, have entered the haunted hallows of my neurotic little mind. You timidly tread on a path worn by years of the anxious wanderings of the crazy woman in the attic and her vigilant pacing back and forth as she scans the horizon for what is to come. Madness drives her repeatedly back and forth back and forth as she screams her banshee laughter and cackles, “It’s coming!”
It occurs to me that I am a little neurotic. I know right? Big freaking surprise to those of you who have had the honor of standing next to me during what I personally perceived to be a high alert situation. Shocking to those who have felt the anxiety shed off of me like a constant molt of yuck and who have heard me endlessly repeat things, as if that could contain the worms in the can. Truth is, I come from a long line of anxious people, my momma and daddy were both Nervous Nellies; and I seem to have gotten a double whammy of the worrywart gene on my catastrophic death spiraling helix. Add to that mix a healthy dose of cancer trauma, and yep, you’ve got yourself quite a psychological horror story.
Quick psychology lesson. DSM-IV will tell you that the trait known as Anxiety shows up in a host of outfits; Obsessive Compulsive Disorder, Panic Attacks and Phobias are some. Post Traumatic Stress Disorder (PTSD) and Social Anxiety are also members of the family and Anxiety, not being chintzy can also give people a combo platter of several types. Me, I have always been a garden variety catchall Generalized Anxiety kinda girl, little bit of this and a little bit of dat; nothing special about me.
In an oversimplified version, Anxiety is controlled by a little almond-shaped thing in our brain called the amygdala.(ah mig dah lah)Powerful little nut that amygdala is; a little panic button per se. When a normal person sees something that feels worrisome like say a snake, that little almond is in charge of sounding the warning (or “Uh-Oh” response as Reid Wilson-anxiety guru calls it.) The “Uh-Oh” is the signal that sets off the adrenal glands, makes us fire cortisol, and engages all the other chemical responses to act; responses which are generally helpful in a normal threat situation. Note the word “normal.”
When someone like me has anxiety, a whole, whole lotta nebulous stuff has the ability to set off that “Uh-Oh” response, things that likely the average bear never even notices as she goes about her day. Experiencing a trauma, like say CANCER introduces yet a multitude of new, invisible to the naked eye of a normal non traumatized person items to set off the panicked feelings. When these triggers, the things that poke at the amygdala and shout “DO SOMETHING!” are related to past trauma, we professionals call the response hypervigilence and PTSD. I think its fair to say that most of us who have worn the pink dress have a wee bit of PTSD after almost dying and all. And its fair to say that a lot of the cancer related triggers seem to make absolutely no sense to us or our family and friends, until of course, you backtrack to the fall of the first dominoes in the series. Phobias are a little different in that they really don’t have an identifiable precursor, but triggers generally have trauma as the culprit.
Admittedly I had this cute, overworked lil almond of an amygdala long before cancer; but now I seemingly have a whole bag o’ nuts. Cancer and all the wonderful experiences that go with it, simply makes us scared of things that the normal chick probably never even notices, like illness, wearing hats or say the smell of band aids, sharpies or skin burning. Sometimes, we are scratching our now hair covered heads going, “What the hell? Why am I wigging out at a baseball hat?”
So add trauma to an already anxious girl, and my amygdala came out of cancer in “Uh-Oh” overdrive with a hair-trigger to boot. To manage it, I have decidedly taken an offensive stance to heading the “Uh-Ohs” off at the pass. Scanning the horizon as good PTSD patients do, I remain ever watchful on the widow’s walk of my mind. Then when I spot something on the horizon (whether real or conjured in my banshee imagination) I rapidly assess the “What If’s” to proactively diffuse it. I generate a plan a,b,c and d if “What If” happens. This serves, in my crazy little mind at least to stem the tide of adrenalin when it does occur by providing it with premade, neat little controlled channels in which to flow like levees in a hurricane.
Cancer made me start considering thinks I never thought before; new and improved“What if’s” materialized because in part, the notion was reinforced that small things can indeed rapidly become BIG things. Cancer also blindsided me, and made me feel I missed something, its cackle of BwaaHaHa! resonates to this day, echoing the notion that had I been on a more watchful guard, it wouldn’t have gotten to me.
Cancer made me crazier. Cause I now spend likely an unhealthy amount of my life in, “What If?” It is hard for me to imagine that a lump on my thigh could possibly be cellulite and not cancer.
I like to think, being the positive spinmeister that I am, that I spend so much time in “What If” to innoculate my brain with controlled little doses of adrenalin, so when real things occur they are not as overwhelming. (Sounds good in theory doesn’t it?) My dad always says that worry is money spent on a debt not yet owed, and boy debt scares me; I have gone bankrupt emotionally at times with worry. Ironically in the face of this habit, I will swear to you I am an optimist, because where some might see a pessimistic doomsday Eeyore I see a good Boy Scout. Albeit a good Boy Scout who annoys the hell out of others with endless preparedness drills.
Blindsides, of which I have had many over the years, make my free-floating anxiety worse and have put my amygdala on a constant state of heightened alert. When I get blindsided, I’m useless for days; I get paralyzed by the flood of adrenalin, like a deer in the headlights, I can’t move and think. See, I can handle a “What do we do now?” as long as “now” is played out in my head long before the event actually takes place. But when I am in blindsided like I was with cancer, I spend my time grieving in my angst and anger over my failure to see it coming. In the end, I am left not trusting myself, not knowing what is solid and true, feeling like the worst Boy Scout on the face of the earth. Blindsides have made me suspicious that the status is never ever really quo, and amplified my global need to take the pulse of everything, over and over cause certainly I missed something; some sign of sickness in the relationship or my body.
I am a shoot my ducks down as soon as they pop up girl, but now I have taken it one further, aiming my gun at the place I suspect they will pop up and sometimes even shooting rounds at the empty space. I am a pre griever, a pre worrier, a preparer for the worst. I exhaust my friends, my dad, my kids and Grandmother Willow. And me. Sigh. I blame cancer.
Cancer did a lot of bad things to me, it took a chunk of my body, it made me have to get poisoned on a regular basis, it burned my skin, it financially devastated me and it stole a few years of my life by making me too sick to do anything. But one of the worst things it did to me was reinforce the notion that a limp in the dog could mean he will die tomorrow, that someone not calling me means they ending their relationship, that a fever could mean meningitis, and that I could die from a dog bite. It made me afraid of normal life events, like checkups and even getting a cold and made me live in “What if?” A friend admonished me the other day when I talked yet again, about Scout dying. “Jesus Lauren,” he said with the beleaguered exhaustion well-known to my friends, “You have had that dog in pine box at least five times in the last three years.” And he’s right, and I have had me there too.
Cancer made me a bit of a drama queen I guess.
Cancer leftovers suck. They are cold and even yuckier when reheated. And the trouble is you never know when your mind, like the frugal,well-meaning grandma is gonna pull the foil off an old unidentifiable clump covered with mold and say, “Oh yes, this will be yummy reheated.” Your mind smells it and says, “Uh-Oh.” Hell, your mind just hears the crinkle of the foil, or the refrigerator door open and you are off to the adrenalin races.
And you know what? Cancer stocks our fridges to the gills with that shit.
I talk a lot in this blog about the PTSD that comes with cancer. The smells and feelings and visual things our minds and muscles secretly recorded unbeknownst to us, and meticulously covered with foil and stuck in the freezer drawer. Vapory, ghostly wisps that covertly reheat later to poke and prod at our sweet lil’ amygdala, sometimes without us knowing it until it boils over. Double, double toil and trouble for sure. Yeah, I am a drama queen alright, but damn it, I earned it.
David Sedaris does this hilarious piece about a purchasing a genuine human skeleton as a gift for his artist partner, Hugh. He suspected Hugh would take the skeleton his art studio but Hugh instead decided he wanted to keep it in the house, hanging it in their bedroom. David writes that every time he sees it, he hears it whispering to him, “You will die.” In fact, he can hear it whispering from the other rooms in the house, pestering him as he works….”You will die.”
A few weeks ago I was talking to a friend on the phone. He had a head cold and as we talked, I could feel my amygdala kicking in and I got all squirmy. I got kinda freaky in that weird way that your body feels fear, but you don’t know why. I wanted to hang up quickly and I did.
It has started to occur to me that I get a little too hinky about getting sick, about being around people who are sick or by being exposed to things that I think will make me sick. While the germaphobe thing was likely always there for me, it was dialed up a thousand notches by cancer. Illness, and all the smells and feels of it are all too familiar and I spend a lot of time and energy avoiding it. The potential of catching something, of getting sick is the first domino; it tips all the rest of the triggers and let me tell you, it’s Guinness Book qualifying long line of them after cancer.
Getting sick scares me now because my mind travels down that well-worn Path O’ Terror to the place where small things can morph in a millisecond into big things. It is hard for me to believe now that strep throat won’t kill me by attacking my heart. I tend to pay way too much attention to small things that are wrong, a tiny red bite that may be a harbinger for lyme disease or even the interplay of my stress levels causing cancer. Because I realize how what I wrongly assessed as a small thing in the past, was in fact a big thing and it blindsided me.
So now it’s all BIG. Cancer makes it hard for small things to stay small ever again, working like a trick mirror on the haunted trail, distorting…distorting and magnifying. “Uh-oh” comes with the slightest sniffle, with the smallest pea of a nodule in your thigh and with the slightest murmur from a lymph node.
When you are trutzing around with a grand total of about fifteen white blood cells circulating through your system, you suddenly realize a small thing like a cold can take you out. A fever can put you in the hospital, where you are susceptible to even more illness, and funny as the notion sounds, being sick delays chemo treatments, and that too can kill you. And when you get sick now those fears, silently recorded, get played.
Cold’s whisper, “You will die, I will kill you.” And your amygdala does not forget that lesson. Sneezes by the guy behind you line at the grocery store scare the shit out of you, even after five years.
I have had this little heart flutter thing of late. While I got checked and was told it was normal, but it still has a stranglehold on me when it happens. It feels like when Herceptin almost killed me, like the day 38 treatments in, when my heart almost stopped. One minute I said to the chemo nurse, “Hey Marci, listen to this,” and the next minute there was panic in the chemo lounge as my line was pulled and I was whisked to cardiac care.
Flutters rattle the skeleton and he whispers, “You could die from this.”
By week 32 of chemo you feel like you have had the flu for well, 32 weeks. Feeling sick, fatigued and vomity, swallowing oodles of pills and feeling dizzy all becomes a constant. When you look in the mirror, a sickly ghostly being looks back at you whispering, “You could die from this.” And suddenly, all the things associated with being sick, become cattle prods to the amygdala.
Now, just feeling sick scares the hell out of me. It rips the foil off the old stuff from the back of the fridge and makes me taste it again as it shoves it down my throat. The few times I have had colds or illness since cancer I am miserable, not a whiny sniffling way but in that edgy free-floating fear as you walk through a haunted house kinda way. Like a pink-eyed zombie, any illness has the ability to grab me and takes me back to the visceral depths of the places I hoped never to visit again by mimicking what I felt all those months. The muscle memory kicks in, the hard wiring fires, the tape recorder hits play and you hear, “You will die.” And even if in your mind you know better, stopping adrenalin is like stopping a train; no can do.
Scan the horizon I do, for coughing ducks.
The good catholic girl in me would like to believe (and does) that the avoidance is not so much of death, as much as it is avoidance of the ghosts of cancer; of the tastes and smells and fear and fatigue and feelings that whisper with their haunting familiarity, “You have cancer. You will die.” I will do anything to prevent those bones from rattling. I will do anything to manage ahead of time that of which I am most fearful. An acrobatic and exhausting avoidance of the haunted place where I once lived and almost died. Avoidance of anything that makes me, my muscles and my sweet little amygdala hear, “Cancer.” Anything… to avoid fear. A fellow blogger coined the phrase, “My fear kicks my other fears ass.” Boy ain’t that the truth?
Skeletons in my closet indeed. Boo.
“You got serious thrill issues, dude”
I’ve been avoidant.
Okay, maybe a little lazy with a capital Z mixed in as well.
A little unfocused. Perhaps a little scattered and overextended.
Despite the urging and friendly Yoo-Hoo’s of others to come back out to play, I have dug my heels in and looked away.
In fact, I have a confession to make. Please forgive me y’all. I’ve been avoidant of reading the other bloggesses blogs as well.
Truth is, way back yonder in December I promised I’d be back soon. And “soon” by any stretch of the definition well, “soon” has done come and gone. And I still sit here, avoidant.
At first I thought I just needed a little break. I really loved writing my lil blog every week, and kinda got to where it was a part of me. Initially, it felt good to empty out the trash can, and to spill out the rummage left behind in my head by cancer. I felt humbly, that I had figured out why I was still here. At first.
My little über analyzing brain has tried and tried to figure out what’s up with the delay of my return to the blogosphere. After a year of writing about the ick and nonsense and cancer drama, I can only describe to you more what I didn’t feel than what I did.
What I didn’t feel anymore was the gratification of the purge; I didn’t feel the expected satisfaction of succinctly tying up so many loose ends and setting them free. At the end of it, I no longer felt the organized glee of putting them all into neatly categorized drawers and boxes and sliding the drawers shut.
No, I didn’t feel the satisfaction of the emptied attic. It left me with nothing to do with my hands. And really, what’s the point of being the crazy old woman in the attic if there is no fodder, if there are no chests to open and frantically grab and wildly throw the contents about while screaming about cancer?
The empty space, albeit peaceful, haunted me more some days than a head chock full of trauma bits.
I mean, who was I if I wasn’t the girl with cancer? What should I do with a mind born to dissect and analyze everything to death when there was thankfully, no apparent death to analyze?
Perhaps (I entertained but for only a moment) I am a tad histrionic after all, thriving on drama and needing crisis to feel like I was alive, forever needing something to do with my racing mind and hands. Perhaps it’s why the stillness, which I did not really resent, felt odd.
What I felt was nothing. Not good or bad, not relief or angst. Nothing. A void. An absence of something that had taken up a whole lot of space. Emptiness where the cancer was, a big empty attic previously taken up by the cancer.
And a reluctance to refill the room with those thoughts again.
Early on in my cancer diagnosis, I was sitting in Grandmother Willow’s office. This was shortly after the dirty little secret of breast cancer was whispered in my ear; that the trick is not it getting rid of it the first time, but in keeping it away. Grandmother Willow was trying to stem my rapidly racing thoughts as they made loop after loop, trying to assure me that one day this cancer would all seem an afterthought.
Because I can sometimes be a Little Miss Know It All, I often tend to call bullshit on theories that don’t match up with my picture of the world, and that day was no different. I remember thinking maybe she was the crazy old lady in the attic because I could see nothing but a life from here on in with the grim reaper as my constant traveling companion, forever bound like members of a chain gang with his endless whisper distracting me for eternity.
I distinctly remember her telling me about woman who recently came to see her who, after a whole first session of spilling her current emotional history said, “And oh yeah, and I had breast cancer ten years ago.” “Oh yeah,” like she had forgotten about it. “Oh yeah,” like it was an afterthought.
“Bullshit,” I thought.
Sitting bald and frightened on her couch, it seemed inconceivable that cancer would one day take up so little room in my life; that it would become such a non entity in my identity. That in the game board of Lauren’s life, cancer would become such a non player in my current emotions on any given future day.
Yet, this is how I have felt these last months. I have felt the absence of cancer.
After years of thinking about nothing but cancer, I have somehow managed to get to where it is not part of the complexion of my being. One day last week, a neighbor stopped to tell me she had gotten her port out that morning. I felt this blankness when she said it, not lack of empathy, but more a situation where I was unable to summon the empathy because I had forgotten how it felt to be in her shoes. I knew she must feel relief, but I couldn’t feel the taste of it in my mouth anymore. When I started to try to remember what I had blogged about ports, I couldn’t even remember what I had written. All I could remember was how hilarious it was that Wendy had made hers into a daisy.
When I went back to read that blog, I swear to you, it was as if someone else had written it. Sometimes this happens with my mom; I can’t remember what she looked like until I look at pictures, and then I am surprised at features in her face that I forgot.
I was detached from cancer. Detached from the chain gang.
Years ago, big surprise, I had to take Concerta for my ADD. With that drug, the thought of food and hunger vanished. I’m not saying I wasn’t hungry or my appetite was curbed, I am saying that the thought of food no longer crossed my mind. I’d be sitting there feeling faint and go, “Oh, yeah, I haven’t eaten in two days.” This little pill took away the emotion and rituals and grooves in my brain that were attached to food and eating; it eliminated the craving and the timing and desire to indulge in this so familiar and daily ritual.
This little blog did the same with cancer. I don’t indulge in cancer much these days. But, it’s not healthy to not need food, nor is healthy to avoid part of your being.
I remember reading how Lance was in an doctor’s office finding out he was just covered with cancer. It seemed insurmountable, yet a few days later after he talked to doctor after doctor about what each intended to do with each and every metastasis he proclaimed, “We had talked this thing down to size.”
Blog by blog, a bite of the proverbial elephant (or grim reaper) at a time, I too had talked the memories and trauma, the cancer down to size.
While the bell can never be un-rung, somehow, somehow….swirling my pen around in the well un-cast the dye. Like a magnet, my pen pulled the dye cast long ago from the water, bringing it from pink to very, very pale, almost indiscernible pink.
Perhaps I lived my way into (at least some of) the answers.
Perhaps I am just reluctant, not avoidant. Perhaps I am detached; not sure that I want to re-attach, or how to re-attach without it filling the room up again.
Perhaps, I have just moved seamlessly, as we do with grief, into acceptance.
Perhaps, I have indeed outlived it.
So in these last months, my life has been filled with all the stuff of teenagers. Colleges visits, college apps, obsessing about the right high school and college choices, proms and dances, driving lessons, graduation preparations for two and undergoing some good old-fashioned teenaged drama teaching me I better grow some thick skin real fast. (Suddenly, I have become a whole lot less smart and a whole lot less funny.) My pop survived another wicked pneumonia, and Scout is still the best dog ever made at the dog factory. Through all of this, I have worn some very good friends down with my new looping obsession; my anticipatory grief that life is gonna change real soon as the kids and people and dogs I love fly away. But in all this, we are busy, busy, busy here at the ranch distracted by life not death; indeed life is moving forward at warp speed.
And oh yeah, six years ago I had cancer.
A little at a time, so as not to fill the attic,
but I’m back.
‘Twas the night before Christmas and all through the house,
This blogger was tired and so was her mouse!
The blogs of the year had been posted each week,
With the goal that 52 would end as the peak.
Yes, a goal had been hung, like a stocking with care,
A blog a week for a year, and she was quite nearly there!
“I’ll continue on,” she thought; but while all snug in her bed,
Visions of junior mints and a blog break danced in head!
Last January she came, dressed in pink from her head to her foot,
Her mind was from her cancer was all tarnished with soot!
When she started to write, old thoughts served to remind,
Of the icky days of old, but Oh! The gifts she would find!
When out of the blogosphere there arose such a clatter,
It seemed what she said, to lots made the matter!
So onto her laptop each week she flew open the sash,
And her WordPress publish button, she nervously mashed.
She said not a word, but went straight to her work,
Writing about PTSD, grief (and some really big jerks!)
For after five years, she had a head full of ideas and hair,
And the scars and the lessons of cancer to share.
The keys of the keyboard; Oh! how they danced!
As the emotions of the big C trampled and pranced!
She wrote and she wrote of feelings both wise and quite fearful,
And a few posts about her wee ones, which made her quite tearful!
This new little blogger so lively and quick,
Knew in a moment, she was no longer sick!
Finding mirrors and perspectives alike in the blogosphere,
And humor, frustrations and commonly held fears.
And then in a twinkling she saw on her screen,
The comments of the bloggesses so sweet and serene.
New friends o’er the world were nestled all snug in their beds,
While Blue Geckos and Underbellies danced in their heads!
She made more friends than imagined (and all she quite fancies,)
Like Wendy, Katie, Marie and both of the Nancys.
Philippa, and Beth, and Brenda and again,
We mustn’t forget Jan, Terri, AnneMarie and Renn!
They giggled about chemo and “twang arm” and more,
And shared the experience of fear to your core.
They talked about thigh cancer and things lost and found,
And they shared cancerversarys, and how klunkers abound!
They shared their frustrations at finding a cure,
And found peace in numbers, of that I am sure!
They found new friends in the most extraordinary of places,
Like Yangon and Ireland, and lots with no voices or faces!
They talked about bedazzled bald heads and daisy dressed ports,
and they found in each other, a worldwide cohort!
They held virtual hands as “Captain Anxiety” danced in their heads,
And celebrated after those quite harrowing rechecks, the finding of NED!
But after working her goal of a year full of blogs,
She needed a break to refresh, from unleashing the clogs.
Yes her little chemo brain-brain needed a rest,
And she needed to cuddle her wee ones, in their little Who-nest.
And what to her wondering eyes should appear,
As she hit publish on this Christmas morning so dear?
As she glanced out from her laptop, while wishing for snow,
She looked back and saw, “Hurray! It’s your 52nd blog!” in the glow!
More rapid than Komen, all year the bloggers they’d came,
And she knew in her heart they’d continue the same!
So she rode out of sight shouting, “Carry on Y’all,
And blog away, blog away, blog away all!”
“On Philippa and Wendy, Annemarie and Renn
On Katie and Nancy, Beth, Terri and then,
Do you recall, the most famous blogger of all?
Marie the red-headed blogger; she led the blog ball!
For a month (maybe two) she’ll be gone but return,
With new blogs on life’s other travails, and fresh ideas to burn!
But for now laying a finger on her laptop to close,
A break from her blog, was the path that she chose.
As she hit “publish” today with a quiet Christmas morn’ tap,
She found her goal in her stocking, and settled for a long winter’s nap.
And she exclaimed with such love as she drove out of sight,
“Happy Christmas to y’all, and to all a good-night!”
When all the noise is gone there is only God. ~Author Unknown
Who knew such a benign and gentle hue could summon such strong emotions, and could wield such power? Read the rest of this entry »
Yep you read that right. Five Ears. Not five Years.
Y oh Y, you might ask, did I drop the Y?
Because I’m talking mouse ears silly, that’s why; Mickey Mouse ears to be exact.
As I hit “publish” on this beautiful orange juicy sunny Florida morning, I am sitting poolside at our very favoritest hotel in the world, the Pop Century Resort in Disney World. Enjoying a big cuppa of Mickey Joe and a tummy full of Mickey waffles, I am both overshadowed and comforted by the familiarity that is a four stories tall Mowgli and Baloo next to our hotel room. I have achieved Disney nirvana here next to the Hippy Dippy Pool; yes indeedy, I have all the bare necessities for this bear to rest at ease.
This trip marks the fifth pilgrimage to the House of Mouse for us since I was diagnosed with breast cancer.
As it is for everyone, cancer treatment was hell for my little family. Looooong months of the drip drip drip of chemo, surgery, weeks of radiation but the worst for a mom was the pain of lots of the fun things that kids like to do like sleepovers and other potentially germ ridden activities being put on hold. My kiddos were so little when cancer came to our house, and I promised their little faces that when the treatment was over, we were going to go to Disney.
Disney World became our carrot, or more correctly our cheese.
Now I had a lot of naysayers about the wisdom of me taking that first trip when I had just finished radiation and still had the drip of Herceptin going, the loudest of which was the voice of reason in my own bald noggin. I realized that I was in no physical shape to trutz two little kids through the massive undertaking of flying, touring four parks in four days, and lasting through 12 hour days in the heat. Beyond broke, I was digging into rapidly dwindling emergency savings to take the trip. But as with most things in life that I really want, when my Pop or other logical adults like my alter-ego voice in my own head reminded me of the sensible thing to do, I didn’t listen.
For some reason, going to Disney represented so much more to me than a vacation. It was about being normal again and bonding with my kids in that familiar way that we had about us before cancer came. It was about giving them the tradition of joy my mom and I had there together. It was about saying that cancer was behind us and promising them that good times were just a day away.
It was mostly about too, I suspect honestly, the fear that it was the last chance to get them to Disney World. It was hard for me to believe in the future.
As I think back on the evolvement of our trips over these last five years, it seems that the tempo of each one has mirrored much of where my life and healing was at that point. That first year out I led my life at a frantic pace, wanting to squeeze ALL of life in because I was scared I’d miss something, scared there would be no tomorrow. And too, that first trip to Orlando was kind of an awful Disney Overdrive, a busy bee buzzing through the parks. Sometimes now, as I look back on it I feel sad when I remember the intensity of the trip, how much I crammed into it so that they would see every last thing, and do every last thing, and remember every last thing– afraid we’d miss something; afraid it would be, well, our last thing. We got up early for magic hours, and stayed up late to see every fireworks show, every parade. Exhausted, hot, tired and cranky kids racing through the parks in a way I doubt they remember much more than a blur.
Truth is, much of my life at that time is still a blur.
Cancer had made me lose trust in body, and this fear showed up on that trip. I sent my son on rides alone because as much as I LOVE rides, I worried about the trustworthiness of my Herceptin saturated heart, and did not want to poke the skunk on Expedition Everest with two little ones in tow. Cancer, despite being told to stay home, wound up coming with us anyway; refusing to be left behind and bringing with it the heavy luggage I carried through each park every day, baggage that contained my ID, insurance card, my oncologist info, my cardiologist, the kids’ dad’s emergency contact info, and list of all current poisons being infused…just in case.
How we did that trip said a lot about how tenuous my life felt at the time. Even though I went to there to feel normal, I couldn’t find normal, or even the illusion of normal, not even in Fantasyland. There were no big adventures had in Adventureland and Tomorrowland well, it just made me uncomfortable, because it made me think too much about how there may not be a tomorrow.
As the years went by however, and I got a foothold on life, the tempo of our visits to Disney also fell in step with the cadence of my healing psyche. There was no longer this mad rush to see and do everything, to cram it all in. Adventures were found at last, fantasies came true, and cancer was not allowed admittance into the Magic Kingdom ever again.
And eventually, I began to trust that there would be a Tomorrowland for we three Mouseketeers.
My kids grew, right along with my confidence in living. They got to where they packed and carried their own luggage and we rode all the thrill rides. Back when my pace to see and do it all was frantic, I remembering wondering why if you came all the way to Disney you would waste a day at the water park or the hotel pool, instead of being at one of the parks. And what do you know, last year Amelia and I went to Typhoon Lagoon for the first time ever, and had THE BEST time; I have discovered the glory of sliding down Summit Plummet, unceremoniously plucking my swim suit out of my butt as I stood up, and then polishing off a giant turkey leg in its wake. I found that a lot of good conversation happens on a lazy river and during quiet afternoons at the hippy dippy pool.
The memories our family has stacked up now, after five ears, are more than even Dumbo could carry:
Embarrassing my kids each year with the extensive diorama I create in our hotel room window, hot days where we hit “the wall” and formed a mini flash mob-ish hat search in the Emporium for the goofiest goofy hats to sport for the rest of the day. Surprising my little ones with giant icees with Mickey feet while they were sitting and waiting for a parade to start, garnering a collective kid eye roll by standing up and clapping when Barack Obama stood up for the first time in the Hall of Presidents. Popcorn for dinner, Princess breakfasts where I asked Colton who that Aladdin looking guy was and he said, “Uh that would be Aladdin mom,” and the look on Amelia’s face when Belle hugged her told her she was pretty. Going into the animation studio to draw 5 times in a row, and sharing Pixar joy with Colton while watching Luxo pop out and perform while waiting for the Toy Story ride. Light up ice cubes at the Sci Fi restaurant, Soarin’ in the smell of orange groves and devouring, well, more than one or two French pastries in Epcot.
We girls still giggle about following a drip drip drip of chocolate ice cream trail along the pavement back to our hotel room one day, finding a smear of chocolate ice cream on the door frame, and then opening the door to find quite happy Colton on the bed with his chocolate ice cream cone…(finally a good kind of drip.)
How each day I gave them a souvenir allowance and took glee in seeing how carefully they picked their parts for Mr. Potato head to fill the box, and how they danced around when I surprised them one evening with a bonus allowance for an extra little somethin’ somethin’. Watching my princess become even more of a princess at the Bibbidi Bobbidi Boutique, seeing them laugh face to face at as they spun in the teacups together, and a tiny Amelia clapping with giant Mickey hands at Fantasmic. Finding every Hidden Mickey the park with Colton, and riding in a giant honey pot 42 times in a row with my own little Lilo and Stitch at the Halloween party. The “Paging Mr. Morrow, Mr. Tom Morrow,” announcement on the People Mover perfectly chimed in on by mom on cue, giant clear balloons with a blue Mickey heads inside and the thrill we felt when we traded for the pin we had searched high and Lilo for. Watching my kids pretend to be completely appalled at how boring they think the Carousel of Progress ride is each year when I make them ride with me, and how I make the ride even worse by singing, loudly, along with the song, “It’s A Great Big Beautiful Tomorrow.” Louder and louder each year, as I become more convinced in tomorrow. More grateful for tomorrow. More confident that tomorrow will be great and big and beautiful things.
We did indeed find new frontiers in Frontierland after all, and normal found us, nested us in the soft white gloved hands of Mickey.
But what I most remember most aren’t the rides, or the things we saw, but the times. The times. And the very best of those times were always, always Mickey gloved hands down, the evenings back in the hotel when tired fits of giggles overtook us and we laughed until we cried. Oodles of giddy giggles launched from the deep comfort of being in this insular, happy place; a place where, as we slept in the shadow of Baloo we did indeed forget about our worries and our strife. The times I thought we may never have again.
In our home, a long narrow ledge surrounds our stairs. Lined up on that ledge, in a mini mouse-like timeline, you’ll see our Mickey ears from the all the years of Disney trips. Cute pink little girl ears, Kermit the Frog ears, Steamboat Willie ears, and Toy Story ears. Ears that look like a Pumpkin, and ears with a Sorcerer Mickey Wizard Hat perched between them. And lastly, classic Mickey and Minnie ears with “Colton” and “Amelia” and “Lauren”embroidered in gold thread on the back. On the doorknobs to my home office hang lanyards loaded with Disney trading pins, each of strand telling a unique story; a tale of what we loved that year and what made us smile and laugh, of what calmed us and what made us find us again.
These things represent so much to me, they hold so much meaning….healing, longevity, a visual measure of a life coming to pass that I wasn’t so sure would do so, five years ago. Our own personal Disney vault of memories; the times…the times where we were overshadowed by Baloo and the simple bare necessities, instead of cancer, the times where we lived, no basked in a great big beautiful tomorrow. Cancer no doubt, takes a lot from us but sometimes, sometimes it gives us something, or just plain allows us to find something that was right in front of us all the time. It urges us to find the time.
It’s hard to see, but sometimes, cancer allows us to live.
Sometimes, it takes soaring above it all on the Astro Orbiter or on an Aladdin Magic Carpet to see it, and sometimes we must climb to a perch in the Swiss Family Treehouse to spot it. Sometimes, it is found deep in the space of a mountain, but mostly, it is found right next to us in the excited breaths of those we love, and in the deep pull in, of our own breath, as we Splash down a Mountain.
Without cancer, I don’t think this Disney thing would have ever gotten started in the first place. It would have been just another one of those things put off indefinitely, to when the kids were older, to when there was enough money to do it, till I was totally healthy…. till tomorrow.
Walt used to say, “I only hope that we don’t lose sight of one thing – that it was all started by a mouse.”
Yes Walt; a mouse, a single cancer cell and a woman who didn’t lose the sight of one thing, one dream-living to see her kids in mouse ears, spinning with glee in teacups and flying high above it all in Dumbo.
One pair of ears at a time, I lived my way into Tomorrowland. And it is for sure, A Great Big Beautiful Tomorrow.
“Paging Mr. Morrow, Mr. Tom Morrow,” Lauren is looking for you.
There’s a great, big, beautiful tomorrow
Shining at the end of every day
There’s a great, big, beautiful tomorrow
And tomorrow’s just a dream away
Man has a dream and that’s the start
He follows his dream with mind and heart
And when it becomes a reality
It’s a dream come true for you and me
So there’s a great, big, beautiful tomorrow
Shining at the end of every day
There’s a great, big, beautiful tomorrow
Just a dream away
~The Sherman Brothers
I am so sick of talking about breast cancer.
In fact, Grandmother Willow and I recently had a fifty minute-ish chat about it as I crawled all over my psyche looking for clues to my blues. This little Suzy Sunshine was très dissatisfied with her last months of little black rain cloud funkity funk and darn it, I told her, I needed to find the source of my gloomy river and fix it pronto. I speculated, as I have during several recent chats that the business of tiptoeing around the mine field that is cancer while writing this blog has had a little something to do with my sad state of affairs. Maybe even a big little something to do with it.
A minefield indeed; a desolate battleground from a long ago war. A place where still, even years later, I must tread carefully as mines are left that have yet to be detonated. Shards of shrapnel remain, ready to slice into my still tender skin as I wander through, and the remains of what was lost still litter the ground creating sometimes massive obstacles to my progress. A land where I occasionally find a bullet in the soil; a tiny yet lethal missile that missed its mark many years ago, which in my hand weighs heavier than I would speculate of its tiny mass, as I mentally gauge the potential it carried as it was fired in my path all those years ago.
I spend most of my days in my professional life seeing and talking about very ugly things; cesspool of human failure things. Over the last 20 or so years in working with abused wee ones, I have learned a little about the cost of caring, the cost of going over and over traumatic events and quite awful things. Compassion fatigue has often been an unwanted traveling companion in my life. It takes a toll on your psyche to care and listen, and it is the high internal price you pay for dealing with highly emotional traumatic events of others over a long period of time.
Like with the artist formerly known as Prince, PTSD is the reaction formerly known as Battle Fatigue, (the cost of dealing with your own highly emotional traumatic events over a long period of time.) And you know what? Cancer is a long ass battle for sure, its got physical and mental staying power. The endgame (that is really the never-ending game) is that dealing with cancer and thinking about cancer and worrying about cancer is freaking exhausting. Revisiting the war zone that is and was cancer, even years later, is exhausting.
I my friends, have cancer fatigue. Cancer has done wore me out.
Because even after five years, there are still bombs that have yet to detonate and that scares me. Daily, I find a bullet in the soil and pick it up and realize how close it came to taking me down; while that act of holding the bullet in hand is in itself is frightening, more terrifying is the realization that there may still be bullets in the gun.
As I write this blog, I realize that I have been anxiously and cautiously tiptoeing along, carefully calculating each step and holding my breath even as I sleep. I’m feeling physically exhausted and mentally fatigued by the constant mindfulness to cancer, from the perpetual heaviness of the armor I attempt to don as I write, and by the tiny yet constant effort needed in the hunch up of my shoulders as I tread.
Years ago, when I got fired for having chemo brain and then opened my own practice I found, as cliché as it sounds, a gift in it (I mean besides not having to work with really dysfunctional people anymore.) I made my own schedule, and likely worked 100 more hours a week but all the sudden one day I realized that my 20 years of amassed compassion fatigue had virtually disappeared.
Now, statistics people could find all kinds of confounds in the causal nature of this phenomenon in my life, such as I was so focused on cancer that work ick seemed small next to it, or it was because I had a break from all the yuck during treatment. But because I know me better than anyone knows me, I will tell you my theory. In owning my practice, I can schedule cases as I like. I can review quite ugly photographs when I am ready and I can say no to the task when I am not ready. I can set boundaries about when and where and how I talk about the sometimes very violent/graphic details of sexual and physical abuse. I can set the pace of cases I see, and take breaks as needed (although I find I don’t need as many breaks as I thought I would.)
The compassion fatigue evaporated as the trauma was more in my control. Work and trauma no longer controlled me; I controlled it. I could control the ebb and flow of kids and cases, and set boundaries about not talking about child abuse in the walls of my house or on weekends or at cocktail parties for that matter (and not look like a bad/rude/chemo brain employee for doing so.)
When I first got sick, my oh so wonderful Pop and bestest friend MJ called me at least once, if not twice, if not three times a day through diagnosis and in those early weeks of the crazy firehose of test results and treatment plans. Cancer was coming at me from all angles, as you all know it does when diagnosis is fresh, and tests and results are being done, and war strategy is being made. I talked cancer, and ate cancer, and I slept cancer, and like poor Jan Brady lamented with sister Marcia, “Cancer Cancer Cancer,” was all I heard.
One day I just got to where I wanted to talk about something else, anything else, but cancer. Heck, discussing toenail fungus or dead pets would have been infinitely better than talking about cancer at that point. I had to set the limit and say, “Look, I want to take a week off of talking about cancer okay? Let’s take a break and talk about something else, anything else for a while when you call.” And because they are good people they did just that, and it helped. A lot.
The moral of the story here is that sometimes you just have to take control and set a boundary with cancer, even after five years. Sometimes, you have to place a moratorium on cancerspeak, and that goes for you, the people around you and for that neurotic little voice in your head.
One of my girlfriends told me that right after she was diagnosed and just before chemo started, she and her 12-year-old daughter (with her onc’s blessing) took a long before cancer came a knockin’ planned trip to Greece. My girlfriend really has the coolest kid; I adore that little cutie pie for her effervescent and eccentric grooviness. Don’t you know that girl took a piece of paper and wrote “CANCER” on it, put it in a box and placed it on the mantle in the house. As they left for the airport, this cool kid was pulling the front door shut and she turned back and said to the box, “Cancer, you are too heavy to carry all over Greece. We know you will be here when we get back and we will be ready for you.”
After five years, it is sometimes still all about cancer. Some months it’s worse than others (if you get my potentially ungrateful sounding drift.) So for the rest of this week, I am declaring a moratorium on cancer. I am instead painting my toenails a delightful shade of robin’s egg blue and with my sweet daughter, I am boarding a plane to Disneyworld.
And with that I will say, “Cancer, you are too heavy to carry all over Disneyworld…even in an elephant that can fly.”
Look out! Look out!
Pink elephants on parade
Here they come!
They’re here and there
Pink elephants everywhere
Look out! Look out!
They’re walking around the bed
On their head
Arrayed in braid
Pink elephants on parade
What’ll I do?
What’ll I do?
What an unusual view
I can stand the sight of worms
And look at microscopic germs
But technicolor pachyderms is really too much for me
I am not the type to faint
When things are odd or things are quaint
But seeing things you know that ain’t, can certainly give you an awful fright
What a sight!
Chase ’em away! Chase ’em away!
I’m afraid, need your aid
Pink elephants on parade
Pink Elephants on Parade~ Disney’s Dumbo