Don't Just Put On a Happy Face

WANTED: Someone who will let me speak my mind about this terrible disease, without having to be brave or positive or sun-shiny. Someone who will let me blow off steam and rant, someone who will let me feel negative and speak my fears about what lies ahead.

 
DESPERATELY SEEKING: Someone who will let me say that I am scared about what might be. That this disease freaks the crap out of me. Someone who will let me not be tough for a few minutes, but break down and cry about my anxieties.

I may get some static for this post, but I think that there is too much pressure on cancer patients to stay upbeat and cheerful all the time, dancing through treatments and smiling during scans. "You can beat cancer with a positive attitude!" Bah, if only that were true, I wouldn't have lost so many friends to cancer. On the contrary, it is perfectly natural – even healthy – to allow yourself to imagine various possibilities of what could be. If you have ever watched children play, you would notice that they act out "scary" scenarios as a way of understanding the world. Virginia Koste tells a powerful story in her book Dramatic Play in Childhood: Rehearsal for Life, about two children pretending to drown in a swimming pool. Their mother was alarmed at first, wondering why they would play at something so terrifying. She came to realize that by acting this out, they were diffusing their fear, and working through what they would do in that situation.


Few adults play-act these kind of scenarios as expressively as children, but we still run through them in our minds. How many times have you mentally rehearsed a difficult conversation before having it? How often have you played out "what if" scenarios in your mind? We instinctively know that these rehearsals help us feel ready to deal with challenging situations.


I understand the impetus from well-meaning friends who interrupt with "don’t say that, just stay positive!" when you talk about fears of what may come to pass in your cancer treatment, but they don't seem to understand that speaking about these anxieties is a means of release. The patient ends up feeling like she has to act happy and fine all the time, and stifles the desperate need to talk through all of this. Unfortunately, oftentimes caregivers feel the same responsibility to put on a happy face around their loved one with cancer, lest they bring him down or pierce the bubble of positivity. It ends up becoming a farce-like scenario you might read in a "Missed Connections" ad, where both people are looking for the same thing and don't realize that it is right in front of them.


As I mentioned in "Dedicated to the Caregivers" I have a phenomenal caregiver for a husband. And while he is often the one who brings me up when I'm feeling blue, I cherish the conversations we have where we let each other know how f---ing terrifying this is. In fact, one of my favorite memories happened a few months after my diagnosis, when it had finally all sunk in. By this time, we had cried rivers of tears and we were starting to accept our new cancer landscape, coming to grips with how totally bizarre and surreal our lives were now. We were talking with a friend about my diagnosis, and the friend said,

"But they caught it early right?"

"…No, no they didn't."

"But they can treat it and you'll be okay, right?"

"…No, no it's actually pretty bad."

And then my husband and I burst out laughing. Really, you can only cry so much, then you just have to laugh. If we hadn't been able to talk to each other freely about all our fears, we wouldn't have been able to share a laugh over how absurd this all was. (Our poor friend looked a little startled.)

Of course, this goes far beyond cancer. How often do we hide what truly bothers us, pushing aside what we really want to say or do because we are afraid of how others will react. I say, go for it! Speak about it. Be bold. You may find that you are less alone than you think, and you can laugh together rather than crying alone.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dont-just-put-on-a-happy-face

Hope vs. Acceptance: The Metastatic Cancer See-Saw

When I was a kid, the playgrounds had the wonderfully simple see-saws that were nothing more than a plank of wood over a pivot point. We would play a game where one person would be all the way down, and the other all the way up.  That child would say,

"Farmer, farmer, let me down!"

The other would respond,

"What will you give me, Charlie Brown?"

And then a negotiation would ensue, with poor Charlie trying to get back down to earth. If the Farmer chose to, she could jump off the see-saw, sending Charlie plummeting into the hard cement. Ah, childhood.


As a metastatic cancer patient, I ride a see-saw between hope and acceptance. Thankfully, on my current treatment, there are days that feel almost normal, where cancer takes a back seat and it easy to hope that this could go on for some time. Then, of course, there are days that the knowledge of what I am facing leaps into my face and refuses to be ignored. The unrelenting nature of this disease can feel just enormous. Month after month of medications, scans, lines of therapy, side effects, weighing pros and cons of treatments, decisions and difficult choices, marching on into eternity. It's why the battle terminology rubs a lot of stage 4s the wrong way. Fight as we may, our "war" doesn't have a clear victory at the end. This is a marathon that lasts a lifetime, and the finish line is six feet under.

Yeah, acceptance.

Much has been written about the danger of false hope, about of the importance of accepting one's diagnosis and prognosis. I think doctors fear we don't understand the gravity of what we are facing, but perhaps they don't fully understand the sensation of sitting at the end of a miles-long see-saw, suspended stories above the earth, waiting to crash down.


The cancer has spread to your hip, your ribs, your spine and your liver.

Surgery is not an option.

There is no cure.

"Farmer, farmer, let me down!"

I have come to believe that hope is vital for those of us living with metastatic cancer. Without hope, the weight of our truth becomes too much to bear. I think there is nothing wrong with hanging on to a ray of hope to beat back the fear, to let you down more gently into acceptance, to, in the words of Dr. Martin Luther King, Jr., "hew out of the mountain of despair a stone of hope." That's one doctor that understood the power of hope! Hope allows us to dream of what might be. And dreams allow us to survive this nightmare.


Stage 4. Metastatic. Terminal.

Fear that every ache could be progression.

Another friend lost to cancer.

"Farmer, farmer!"

…and then I meet someone who has been living with this disease for over nine years.

… and I learn of a promising clinical trial.

… and I meet a stage 4 lung cancer survivor who has been off treatment for two years.

And I am lifted back up, Charlie Brown.


I am well aware that everyone's case is different, but hope softens the crash of acceptance. Perhaps there is a way to get that see-saw to balance acceptance of this disease with hope for more time here on earth. I strive to find that equilibrium.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/hope-vs-acceptance-the-metastatic-cancer-see-saw

Cancer: the World's Worst Houseguest

You are sitting down to a nice dinner when you hear a knock on the door. That's strange, I wasn't expecting anyone. You open the door a crack to see who it is. He shoves the door all the way open and barges in.

It's Cancer, the World's Worst Houseguest.

He walks right past you and leaves muddy footprints all over your carpet. You are in shock. You didn't know there was any chance of him coming over. It was the last thing on your mind, but here he is, lounging on your couch like he owns the place. Who is this? What is he doing here?

Once the shock wears off, you try to talk to him. How long will he be staying? Why did he pick you? He just shrugs, rolls over and goes to sleep, snoring loudly.

You start to question yourself. If only you hadn't left the porch light on, maybe he would have gone right past your house. The neighbors whisper that you never should have bought that welcome mat. And the charming walkway lined with flowers just encouraged him.

The visit drags on and on. The days turn into weeks, and before you know it he has been there for months destroying your house and turning your life upside-down. You are exhausted because he wakes you up at all hours of the night. He walks around in slippers and thick socks, saying that your floors hurt his tender feet. He has puked on the carpet and clogged up the shower drain with his constantly shedding hair. He alternately eats everything in sight and complains that your food tastes weird. You notice that a few friends have stopped coming over, and you know that it is because they can't stand being around this guy. You can hardly blame them; you don't want him here either.

However, you also discover that you have an amazing community that offers to bring meals, help out around the house, and even drive your nasty houseguest all over town to his various appointments.

As time goes on, you meet other people who have experienced this terrible houseguest. Yeah, the same thing happened to me. He showed up totally unannounced and made me adjust my whole life to accommodate him. You discover that you now have membership in a club that no one wants to join, and soon you are swapping tips with others. When he kept complaining that my food tasted funny, I got rid of the metal cutlery and started serving it with plastic. He said it tasted much better! You find that together you can even laugh at his bizarre quirks.

After a while you start to get used to him hanging around, but you never forget that he is there. When you are feeling relaxed and happy, you hear him run to the bathroom. Your quiet book and cup of tea are interrupted by his hacking cough from the next room. He is always present.

Finally, after a seemingly endless string months, you kick him out of the house. You celebrate your freedom, but even then you find yourself checking the closets, peeking into dark shadows to see if he might be hiding somewhere. You think you hear him following you late at night. And every few months you get a message from him. He's considering stopping by again for a visit, but he's not sure. You peek out the window and think you catch a glimpse of him turning the corner.

One thing is certain: your life is never the same again after you receive a visit from the World's Worst Houseguest.


Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/cancer-the-worlds-worst-houseguest

Dedicated to the Caregivers

Last night renewed my admiration for caregivers.

My husband and I were getting ready for bed when we heard a strange noise coming from our daughters' room. We ran downstairs and found one of the three-year-olds standing outside her room, mouth hanging open and making a horrible gagging, coughing sound. At first we thought she was throwing up, but then she kept trying to suck in air, and it almost sounded like she was choking. "Can you breathe?" She shook her head and tears rolled down her cheeks.

My husband donned his superhero cape while I grabbed her coat and hat. He whisked her into the car. I scraped the ice off the windshield while he buckled her into the car seat. And they were off.

I stood there and watched them drive away, feeling totally helpless.

How do caregivers do this?!?

Her sister had woken up, so that snapped me back to my senses.

Okay. Focus.

Get her sister back to sleep.

Run through nightmare scenarios in my head.

Check on the kids.

Feel like throwing up.

Fold laundry.

Check on the kids again.

Stare at the clock.

Calculate how long it takes to get to the ER, check in, see a doctor.

Check my phone to see if I missed a message.

Check on the kids 1,000 times.

Sit down.

Stand up.

Scroll through adorable pictures of the kiddos.

Turn my phone buzzer to max.

Stare off into space.

Jump out of my skin when I get a text.

It's just croup, she's going to be okay. They will be home in a few hours.


Finally exhale.

Breathe.

Breathe.

Focus.

Find humidifier.

Clean out humidifier.

Reflect on how caregivers live in this space of terror, being responsible and powerless at the same time.

Feel humbled and amazed.


I've been living with stage 4 lung cancer for a year and a half now. My husband has watched me struggle to breathe, seen me puke my guts out, taken me to countless doctor's appointments, taken over cooking a meal mid-stir when I was too exhausted to go on, run from floor to floor of the hospital parking ramp looking for a wheelchair for me, all the while keeping our household running and parenting our three small children. I have no idea how he does it. In sickness and in heath, indeed.

To all the caregivers out there, all you unsung superheroes, my admiration for you is greater than ever. Watching someone you love struggle to breathe, battle side effects, and deal with endless pain is its own kind of torture. We patients go through this because we have no choice. You do it out of love.

That, my friends, is truly inspirational.



Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/01/dedicated-to-the-caregivers

Superhero image courtesy of vectorolie at FreeDigitalPhotos.net