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Honky Tonk Cancer

A Word to the Helpers: What She Needs Now

Helpers - Elaine Oyzon-MastShe’s headed into surgery. In the healthcare realm, she’s a patient. To you, she’s a wife, mother, daughter, friend, co-worker, or just someone you run into every now and again. No matter how you know her the compulsion to help is overwhelming, yet you feel helpless.

She’s feeling that helplessness too. She’s no longer in control of her own body. In the near-term, the daily routines she has carefully, lovingly, cultivated over a lifetime will be taken from her: kissing her husband as she heads off to work, making dinner for her family, tucking her babies into bed at night. After treatment, she’ll have to work twice as hard to cultivate new routines as she learns to live with side-effects that she can not possibly anticipate.

So she needs you. And you want to help, but you don’t know how. She’s so consumed by gratitude, guilt, and a hefty dose of propriety that she won’t ask you for help, and she certainly won’t tell you what to do. And just like those side-effects that no one warned her about, she doesn’t yet know what she needs.

The second largest determining factor for cancer survival (following relative health prior to treatment) is the patient’s support network. While love, prayers, and healing “vibes” being sent her way will certainly help her spirits, it’s not enough. The here-and-now needs to be attended to. When we break down the barriers of what is polite and proper to ask for, when we remove the presumptive attitude that she is “grateful for whatever help is given,” we can be frank about what “helping” her actually means.

She needs Money.  I don’t care how spectacular her medical insurance might be or how much money she has in the bank, cancer treatment is mind-blowingly expensive. Tens of thousands of dollars out-of-pocket expensive and it doesn’t stop when the initial treatment ends. The guilt she’ll feel over spending her kids’ college fund on rounds of pharmaceuticals is gut-wrenching. Give her money. Don’t even tell her where it came from, lest she try to refuse it. If you don’t have money to give, start a web funding campaign – I’ve seen people raise ridiculous amounts of money for less important endeavors. Have a bake sale, create a charity event, host a party with proceeds going toward her medical expenses. $20 across just half of your Facebook friends can be a huge help.

She needs Groceries. Taking her out of the day-to-day equation and adding daily doctor appointments and hours spent in bed means that ordinary life gets put on a back burner. No one realizes that the toilet paper is gone until you send your child through the house on search for a tissue while you sit on the toilet. Toilet paper, paper towels, dishwasher soap. Find out what detergent they use, what cereals the kids like to eat in the morning, what kind of milk they drink. When you buy your own groceries, pick up an extra bag of coffee and some filters, maybe a carton of orange juice and drop them off at their house. The most spectacular help you can provide right now will be the most ordinary.

She needs a Clean House. Her senses will be assaulted from all sides and she’ll be physically unable to do anything about it. Cancer treatment is messy. Vomit is inevitable, and there will be a lot of it. Her husband won’t be able to take this one on, even if he normally considers house cleaning an enjoyable hobby. Pitch in with friends and hire a housekeeper, or take on the task yourself. Once a week. This one is no joke.

She needs Meals. I know that everyone loves to sign up to bring a meal. It’s easy and it gives instant “I helped!!” gratification. Unless you know the family and their tastes, your covered dish is clogging their fridge/freezer. Her two-year-old doesn’t care how many people love your tuna casserole, he’s not gonna touch it and her husband will feel too guilty to either throw it out or to send out a list of likes/dislikes to those folks who are generous enough to supply food. For those of you who want to provide dinner, but you aren’t privy to the household table preferences, purchase a restaurant gift certificate – not a sit-down place, but someplace where they can pick up food to-go, barbecue, wings, burritos, etc. If you do make a meal, provide throw-away meal holders only. Don’t ask for your pan back. Just don’t.

She needs you to take care of her Kids. It will eat at her soul that she isn’t being the mommy she wants to be to her kids right now. Her baby will be screaming from the other side of a closed door trying to get to his momma and all she can do is put a pillow over her head to try and muffle the noise. You can’t fix this, but you can ease her pain, if but a bit. Help get her kids to school/the babysitter. Organize outings, playdates, trips to the zoo, the park, your house to bake cookies. Keep the kids entertained, occupied, and well-cuddled. Remind them just how much they are loved.

She needs you to Give Without Getting. If you find it rude that someone doesn’t send you a thank you card, don’t help. Seriously, don’t do anything. She doesn’t need to worry that you need her gratitude. She is grateful, beyond grateful. You don’t need an acknowledgement of your own kindness. If you think that not sending thank you cards is a travesty, offer to take on the job for her. Let her focus on her health while you focus on manners.

She needs you to Stick Around. A common misconception is that cancer treatment ends. Her body will never be the same, she’s expecting that. What she cannot possibly prepare for are mental and emotional struggles she’ll face for years after surgery, chemo, and radiation have taken their toll on her body. Paranoia, depression, post-traumatic stress, these are issues that she may need to work through long after she gets out of bed. Be her friend. Take her to get a pedicure. Check in with her and ask her how she is really, truly feeling. Offer up your lake house so that their family can go on a vacation together. Take care of her kids for the night so that she can go out with her husband. Her struggle hasn’t stopped, it’s just become less visible, continue to let her know she has support long after the casseroles have stopped coming.

(photo credit: Elaine Oyzon-Mast)

 

 

 

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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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