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August 2015

The Least Dramatic Cancer Experience in the History of Cancer

My father is a cancer survivor. I do not use the term lightly – he had more than one brush with death during his treatment. Now, several years after being declared cancer-free, his life is still impacted by the disease. It has been an ugly, tear-filled, dramatic experience for my father and our entire family.

In contrast, my entire cancer experience from diagnosis to the “cancer free” designation took less time and heartache than most kitchen renovations.

It doesn’t feel appropriate to say I’m lucky (“lucky” and “getting cancer” just don’t jive), but fortunately for me, my cancer was entirely treatable with an impressively high five-year survivor rate of 95%. That’s not to say that there weren’t some dramatic components to my cancer experience. I was only 37 when I was diagnosed. I had four children, the youngest of which was only 18 months old. I was diagnosed at stage IV with a rare cancer that usually only preyed upon grizzled old men who spent the majority of their lives inhaling nicotine and whisky. Treatment was brutal. My throat was burned to a crisp by radiation and pain meds made me vomit. I lost weight. I lost hair.

And then it was over.

Really. Just like that.

I went for my first run (ok, jog)  just three weeks after my last dosage of radiation. Less than five months after diagnosis, I was given my cancer free card. Two years later, memories of my treatment are similar to those of giving birth. I have distinct recollections of pain and suffering, but no real association to it. Those friends and family who were witnesses to my treatment and recovery remarked on my strength, courage, and determination. For the first time in my life I was told that I was inspiring. I was a survivor.

Only I wasn’t. There is probably some statistic out there that could claim that I was more likely to die in a car crash within spitting distance to my house than I was to die of tonsil cancer at 37 in an otherwise amazingly healthy body. I’m not a survivor for being cancer-free any more than I am because I managed to get my minivan home in one piece. Rather than survive cancer as so many can rightly claim to have done, I endured it.

Enduring is so not dramatic. There are no ribbons to wear for tonsil cancer, no three day walks. There is only endurance, but that’s the point. Cancer isn’t always a death sentence, though we all treat it like it is. While that attitude can be helpful when sympathetic family and friends come out in supportive droves, it can also lead the person with cancer to believe that to go from diagnosis to cancer-free is some miraculous, dramatic journey where only the strongest, toughest souls will survive. Sometimes cancer isn’t a life-or-death war that needs to be fought. Sometimes it’s just a really crappy illness that you have to get through.

I believe that there is a time that comes for all cancer victims when we need to decide whether or not the disease defines who we are. The drama that surrounds cancer can be a heady drug – it can make us feel very special to hear others tell us how strong, courageous, and inspirational we are. It can make us lonely to watch the well of sympathy run dry as friends and family return to making meals for their own tables. Getting back to normalcy after treatment can be physically exhausting.

Some, like my father, will always be defined, in some part, by his cancer experience. His physical scars serve as ever-present reminders of his sickness. For those of us who aren’t like my father, we should embrace our good fortune and work to help others take the drama out of their cancer diagnosis. No one wanted to tell me, “No, really, you are going to be FINE.”  What if I was one of the 5% with tonsil cancer who wasn’t fine? Would I spend my eternity rising from the grave to whisper into the ears of my well-intentioned friend “You were wrong. You were wrooooooooong!”?

Maybe. But mostly I think that taking some of the drama away from the diagnosis would have dissipated much of my anxiety. I might have shed a few less tears, spent less time thinking that I was going to die. My experience with cancer wasn’t a freakish anomaly. There are others like me out there. We aren’t superheroes, we experienced no miracles, we performed no magic. We just happened to slog through a particularly intense shit storm, after which we dried ourselves off and moved on.

Cue dramatic music. We endured.

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Beware of Campsite 529

Murphey’s Law of family travel: No matter how practical, methodical, prepared, and organized you are, be prepared for a zinger that will cause your head to ache, your back to break, and your soul to whimper, if just a little.

Campsite 529 was absolutely perfect in every aspect. Flat, not too far from the bathrooms, within sight of the playground and the camp host.

Perfect.

Until it got dark.

No, that wasn’t the moment that some deranged ax murderer started stalking the campsite. Such a menace would have never stood a chance near Campsite 529. What we failed to notice during the scenic, beautifully sun-lit day was an extremely large, extremely bright lamppost towering directly over our sweet home away from home. We waited, convinced that an automatic timer would switch the beacon off as the night wore on. As the hours ticked away, however, the phosphorescent sentry continued to glow, burning its yellow haze into our corneas.

By ten o’clock, the older children were tearfully bemoaning the ineffectiveness of the 50 glow sticks that they insisted on breaking open the minute we set up camp. Our tent had become a front row seat at an insect rock concert, their seemingly gigantic skeletons plinking loudly against the hard plastic shell of the world’s biggest bug lamp. Worst of all, nothing could convince the baby that, though it looked like it was noon and therefore time to play, it was actually several hours past her (very, very, necessary) bedtime.

Whether setting up or taking down, campsite work is arduous. The thought of moving our carefully placed tent and our ten million other belongings to a new campsite filled us with dread. We listed the pros and cons of such a move. We hemmed…we hawed… As we attempted to convince the baby to sleep with yet another round of off-key lullabies, my husband looked at me, the red veins in his eyes clearly visible, and offered the dreaded “I’ll do whatever you want to do.”

I could bear it no longer. The thought of spending another night cocooned in the gruesome haze was too onerous to bear. We had to move.

Once my watch told me that the sun had risen, I searched for a new home. I found just one open site. It was on the opposite side of the campground, it was not flat, it was far away from the playground, and it was even further away from the bathrooms. The kicker: between it and the big beacon of light there were trees. Lots and lots of leaf-filled, light shielding trees.

I could feel the husband’s unspoken grumbles as I walked him to this less than idyllic location. Somehow, I channelled Mary Poppins from deep within my psyche. With “A Spoonful of Sugar” ringing in my ears, I was playful, I was entertaining, I was helpful. I was even NICE. Like, to everyone. And they ate it up.

We carelessly tossed our gear into the van. The kids became miniature sherpas, canvassing bags, clothing, towels, and sacks of food across the campground. My husband shoved the half-broken-down tent in the back of the van and drove it, back door open, to our new campsite. The entire process was complete in 30 minutes. A campsite establishment record. We grilled up a lazy man’s hot dog dinner that night, shook up another 50 glow sticks and waited. It got dark. Then, it got darker. The light from across the campground at Campsite 529 could not make it through the tree line to assault our tent. It got so dark we needed to use both our lanterns just to get the kids into their pajamas.

By the time my husband and I fell asleep that night, I couldn’t see my hands in front of my face. I groped blindly in the dark for the bed next to mine and touched upon the best possible payoff of changing plans on the fly:  the baby, deliciously, completely, and utterly, asleep.

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Don’t Pray for Me, Argentina

[Context Commentary: In September of 2013, I was diagnosed with Stage 4 Tonsil Cancer. I was pretty pissed. While I wrote this musing in anger, the only part I disagree with today is that I might live to braid my daughter’s hair. At three and a half, Ella still looks like a freshly-shorn Army recruit. I might miss out on that one.]

“I know you don’t believe in it, but I’ll be praying for you.”

I’m about to commit the ultimate taboo of telling someone else really shitty news. I’m going to tell you not to pray for me. Let me repeat that really slowly so that it sinks in completely: I DO NOT WANT ANYONE (this means you, your church, your grandma, and your scout troop) TO PRAY FOR ME. Though I put this request (command) in all caps, please don’t use an angry voice to read it. It’s more of an “Enough already, I really don’t want another brussel sprout on my plate” kind of tone. Rolling your eyes while saying it will get you closer to my intent. Telling folks you are very sick seems an opportune time for many to tell you all the good things about their god. Telling me that you are going to pray to your god for me is akin to “Oh, did you know I can do magic?”

I am a pragmatist, a realist, one of the most practical minded people you’ll ever meet. My husband not-so-jokingly calls me “dream killer” around the house as he and my children create elaborate schemes and compilations and I listen patiently before intoning “Yes, but…”. This isn’t sad and doesn’t mean that I lack vision, it’s just that this is the way I am hardwired. You are going to tell me your one step plan and I am going to break that plan down into 1,366,999 other steps that you didn’t even realize could possibly be there. Yes, it can be annoying. It can also be simply brilliant.

Where my pragmatic nature leads me is to understand and accept that prayer simply doesn’t work. If you absolutely must believe then please, prove me wrong.

Do it.

Right now.

Make it work.

Go ahead, I could use a win.

Prayer, in the sense that you ask for something and it’s given to you, is easily testable. Please pray for my cancer to go away, right now, before my body is racked by radiation and chemotherapy. Before my children have to see me as a walking skeleton who needs a feeding tube for sustenance. Before my husband has to manage work, house, children, and a sick wife for weeks on end by himself.

Yep. That’s what I thought. Tumor is still there. Shocking.

Now, I’m completely familiar with what we say when prayer doesn’t work. I grew up Catholic, spent many years in Catholic schools, including two colleges that required theology courses for graduation. That’s not how prayer works, I’ve been told over and over again. God is mysterious and he “has a plan.” He only gives us what we can handle and he helps those who help themselves. He will make sure that we have what we need rather than just handing over what we think we want.

Wait for it, I’m about to hit taboo #2….if any of the above is true, your god is an asshole. Bonafide. If you can justify your god allowing a mom of four small kids suffering from cancer while child rapists live to be 80 without issue, you are an asshole too.

While I currently have no more evidence that your god exists than I do fairies, Santa Claus, Zeus, Vishnu, or the Loch Ness Monster, I do accept that with proof, the burden of “belief” disappears. Worship of said entity, however, is something that I just can’t do. Given what he allows to happen, what that big boring black book gives him credit for, I have to tell you, I think he’s a real dick. I realize that in breaking these taboos I am offending you. I’m supposed to remember that: 1. your heart is in the right place, 2. you are only trying to help, 3. prayer certainly couldn’t hurt the situation.

Taboo #3: I find your prayers offensive. By saying you will pray for me, especially when you know that I don’t happen to believe in the power of prayer, you are telling me that you do not respect my beliefs. To know that you’ll make excuses if I don’t get better rather than admit that your prayers didn’t work makes me want to punch you. To think of people sitting around thinking, hoping, and wishing, instead of taking action irks the hell out of me. To consider that if I don’t get better you’ll attribute it to “god’s plan” and that will be ok with you, makes me more than a little nauseous. And prayer does hurt. It gives people a sense that they are helping and therefore gives them justification for doing absolutely not one other thing that actually does help. Prayer won’t mow our lawn tomorrow, or get me to radiation therapy every day for six weeks. Prayer won’t make sure that my kids get outside on cool fall days when I can’t get out of bed. Prayer won’t pay our medical bills.

I believe that my doctors will cure me of cancer. I believe that their task is 95% of the fight and that while I only need to fight the other 5%, it will be the harder fight. I believe in the power of my mother to get shit done to pick up the pieces I can’t pick up. I believe that by surviving cancer himself, my dad has paved the way for my own fight. I believe that my friends and family, no matter where they are, will come to our aid as we plug through the next few months.

I believe that my husband is an absolute bad ass.

I believe that I will live long enough to braid Ella’s hair.

These are the beliefs that I hold on to. If you are going to come in to my life at this time, please respect my beliefs and keep yours on the other side of the door. If you really want to know what you can do for me, let’s start with that.

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The Art of ReInvention

The last time I wrote a resume, people were still stuffing their basements with apocalypse supplies in preparation for the anticipated Y2K disaster. That resume landed me a great job with a great company where I worked for many years. I made friends, travelled, earned promotions and made lots of money. The stuff career dreams are made of.

Then I had babies.

I tried, after the first baby, to maintain my prenatal workload despite the introduction of nursing bras and zero sleep. Even after the second baby I kept going, maintaining some sense of balance by  reducing my work hours. By the third pregnancy (yes, we know what causes it, and yes, it was planned), my career had completely taken a back seat to my family. I opted out of the workforce. I was tired of being jealous of the nanny, tired of feeling like I was doing a crappy job at work, and tired of feeling like I was doing an even crappier job at home. I was just tired.

I’ve now been a stay-at-home parent for six years. It’s been a lovely six years and I actually (honestly) have no regrets. I’ve been a better parent and a better – I’ll say it – person since I’ve been at home with my kids. We’ve had one more kid since then (yep, that one was planned too) and added a dog. My staying home to take care of our family full-time was the right decision, without question.

Then came this, a game changer: My youngest child started preschool. For the first time in the six years that I have been a stay-at-home parent, I don’t have a child to stay at home with.

For those of you who don’t have kids, let me make one thing perfectly clear. “What are you going to do all day?” isn’t the right question. My family eats at home – I cook. One income doesn’t afford us a maid – I clean. Six people dirty a lot of clothes – I launder (oh, so much laundry). Schools need tons of support – I volunteer. I grocery shop, fix broken things, help with homework. My day isn’t lacking for “things” to do.

The right question is, “What do you want to do all day?” For six years, I’ve devoted myself solely to parent-y, household-y activities. While I know that none of those things are going to disappear now that all my children are in school, I don’t want them to command my focus. Yes, without children at home it might, just might, be possible for me to be caught up with laundry, at least most of the time. Hell, I bet I could even learn to master the most dreaded of household chores: fitted-sheet-folding. But I don’t want to. (Irresistible aside: does it really matter if your sheets are rolled in a ball? have you ever had someone come over and look in your linen closet and remark on the mess that’s there? have you ever had someone come over and look in your linen closet?). I’m not saying that running a household isn’t important, just that I don’t want it to be all that important to me.

The beauty of my situation is that my family isn’t dependent upon my income generation (although more money would be really, really nice to have). Without dollars clogging up the equation, I feel no pressure to walk a path that isn’t ideal. For now, I get to ask the question “What do I want to do now?” and enjoy the pursuit of uncovering the answer.

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