Tag Archive: cancer


robrunningonbeach

i love this picture of my buddy Rob [who died just over a week ago from cancer] and everything it expresses – carefree, full of life, plus the symbolism of running off into the distance is not lost on me.

But i miss him a lot and it’s only been just over a week. Only? Yeah, something like that. And i think words are my processor so this is really for me, but you’re welcome to eavesdrop, especially if you knew my buddy. Continue reading

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Aaron Fullerton pic

Continuing to share some of Aaron’s story of his journey with and away from testicular cancer which you can find in full over here, i decided to grab three sections from three longer posts to share some of the insights he gained along the way as well as some of the challenges he faced and encouragements he received along the way. There is something for us all to learn here:

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With no power comes much less responsibility [which is nice]

Mind over matter extends to attitude and optimism, and I still feel very optimistic about this whole cancer thing. But mind over matter isn’t about control, and it’s been truly humbling to learn that. Cancer and chemo are going to battle inside my body for awhile – that’s the deal. I can view it through whatever-colored lenses I choose, but I can’t control the process. I can’t make the pain submit to my will. I’m not an Expendable.

I’ve touched on this before, but recognizing how little you’re in control? It’s a valuable experience. More than ever, I have to accept that I’m not in charge. I’m not God and my plans may not be His.

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It’s cancer but you can call it “Terriballs” if you want to

“Cancer’s not the bad word it used to be.” That’s what one of the lab technicians told me as I had to do insane breathing exercises that simulated blowing up balloons underwater or something. “Yes,” I told her, “you can even say it on network television now.” We went on to discuss health care, our faith lives, and how much she loves Bones, but I keep thinking about how she casually downgraded the word “cancer”… and how badly I needed to hear it.

Cancer. That dang word has been one of my biggest obstacles. I fear pity and I hate worry, so I want to distance myself from a word that carries such weight and stigma. I wish I could call my condition something like testiculitis, or terriballs, or a bad case of the nutz. (Probably the first one.) Most of the time, when you drop the word cancer, it lands on the floor with a shatter, sending shock waves of seriousness through the conversation. It hints at mortality and suffering. It turns goofy laughter into tight, serious smiles with sympathetic eyes. That never happens when you just have terriballs.

Chemo, too. The moment I name drop “chemo,” I know people are trying to imagine me 20 pounds lighter and minus a head of hair. In movies, characters who go through chemo almost always die at the end, especially if Abigail Breslin won’t give them her bone marrow. American vernacular has given the word a ring of hopelessness.

I’m not trying to say chemo and cancer aren’t serious or difficult. They are. But they’re large, encompassing words that include a variety of experiences. I’ve been feeling owned by these words, by their ability to put me in a box, to define me in the eyes of others.

But now I’m realizing: I’m the one with the mouth. I’m the one with the pen, the keyboard. I get to define cancer as it applies to me. I don’t have to write “cancer” or “chemo” apologetically. I don’t have to say them carefully, with a wince. They’re my words now and I will use them in whatever flippant fashion I SO PLEASE. “Yeah, dude, just zippin’ on over to chemo to do a little cancer blastin’, then we can ron-day at Chili’s and watch the sports contest.” I don’t really talk like that, but I think you get the idea. Cancer? Chemo? You guys are mere nouns to me right now.

Maybe it’ll still stop others in their tracks. Maybe the words will grow heavier on me as time passes. I’m not sure yet. But if I precede those nouns with odd, pregnant pauses, then I’m giving power to something that doesn’t deserve it. For now, the only time I’ll say “cancer” with a somber tone is if I’m trying to get a free appetizer at Chili’s.

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Hairless & Magically Healing like E.T.

I’ve spent most of 2013 either in bed or in a medically reclining chair. Chemo, especially as you get deeper into your cycles, zaps you of energy. And when you’re lacking energy, you start to feel like you’re lacking your own personhood. Narcissism creeps in and you start to believe that the world won’t really keep going while you’re down. Nothing all that important will happen without you – you write topical tweets about the news, for Pete’s sake! But the world forgets and the days fall by the wayside and when time passes without you and you’ve contributed nothing to the world, you feel like the disease is stealing some of your personality. (I mean, looking through these tumblr posts chronologically, I can see my joke-to-paragraph ratio fall to a point where I worry if solemnity is becoming me.)

But then, like E.T., something comes along with a magical healing touch (and bald head) and helps remind you who you are. As you may have seen in my twitter feed, my co-workers made the incredibly touching decisions of shaving their heads. It’s a tried-and-true move of solidarity, but it still feels (and is) incredibly personal. As they sent me pictures of their half-shorn heads through the evening, a tear may have formed in the crinkle of my eye. It’s not just that it was for me – it’s that it had the goofiness, whimsy, and, yes, ballsiness I would have wanted it to have. It reminded me of who I am day-to-day, when I’m not stuck in a bed. It was a welcome jolt, a refreshing laugh. It was a deeply felt and appreciated act. It made me feel like maybe the world is spinning without me, but damn it there are people who are determined to make sure my mark on it doesn’t easily disappear. Somehow, I keep getting luckier.

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You can follow Aaron Fullerton on the Twitterer at @AaronFullerton

[To read some more of the posts i have shared from Aaron’s blog, click here]

[For other Taboo Topic stories of people struggling with cancer, click here]

Continuing to share some of the stories from the archives of Aaron Fullerton to be found in full on his blog, Aaron Laughs With Cancer, and in this one Aaron takes some time during the chemo, to mention some things he is appreciative of during what is a tough and scary journey:

Aaron Fullerton pic

THE COOLER SIDE OF CHEMO

I’m typing with my left hand because my right is hooked up to an IV that’s pumping me full of supercool chemical solutions. So far, chemo has simply been drinking through Krazy Straws through my arm, but I know I’m at the beginning of this crazy ride and it’s easy to feel like the safety bar is still in the locked position. That bar may come loose and this coaster may get rickety, but I know it pulls into the station at the end.

When things get rickety, though, I may need to remind myself that, besides CURING MY BODY OF CANCER, chemo has some sweet benefits. I’ve compiled a definitive list, both for my future-self and those who may worry about me.

First, there’s the snacks. Fun size candy bars? I’m tossing ‘em back like shots. Soft cheeses? More like yes-pleases. (Wow, sorry.) I’m munching on trail mixes you’ve never even heard of. These are not just oncologist-approved, but oncologist-encouraged. Kindergarten me would be so jealous.

I’m also a book nut, although that’s waned in recent years. But now I’m getting an opportunity to dive back into the stacks on my shelf. I’ve lined up a mix of fiction and non-fiction to attack over the next twelve weeks and I can’t wait. Creatively, nothing inspires me more than great writing. Bossypants, Fault in our Stars, Gone Girl… you’re finally gettin’ read!

It’s also given me hours to delve deep into writing; at Graceland, we’re currently breaking story on the episode I’ll write. This quiet, focused time in the morning has allowed me to let my synapses crackle with ideas about our wonderful characters and storylines. I began this dream job in August and chemo, of all things, has strengthened my passions about it even more deeply.

Control can also be an, um, issue for me. For example, I have strict rules about which foods should go on which shelves in my fridge. (Juice on top! Hummus in the middle! That’s just food logic!!) Chemo is reminding me, though, how helpless I am sometimes… and that there’s actually a lot of freedom in that. I just sit back and let fluids work their miracles. It’s refreshingly peaceful to not be able to do more.

Last and most importantly, there’s the people. The nurses, the doctors, and the little old lady next to me carrying a dog named Cinderella – remember, I’m in LA – have all been warm, open-hearted, and good-humored. Everyone online, too: you guys add so much to the chorus of encouragement everyday that it sounds like a down-home gospel choir. (I’m so glad they let me tweet during chemo.) And Sarah, who’s beside me everyday, committed to this adventure with her whole heart. Her laughs undo any pain from the needles, her concerns cut through my bravado, her presence is a joy. Plus, she’s the one who brings the snacks.

I may get mad at chemo later. I’ll yell at it resentfully, like Dana Brody after spilled milk. So you guys will have to forward me this link. Remind me of my good luck. Just don’t mention that, without my right hand, this took me five hours to type.

[For the next part which looks at encouragements, challenges and insights, click here]

Aaron Fullerton pic

The first of our Aaron Fullerton journey stories was published two years ago and is reblogged with permission:

The original title: Laughing With Cancer, Not At It:

When Lance Armstrong fell from grace a few weeks ago, I didn’t really care. I’ve always appreciated him for the icon he is, for the modern miracle of his health and success, but when I think of Lance Armstrong, I think of three things: bracelets, Michelob Ultra, and high-fiving Matthew McConaughey. But now that there’s an odd, shameful shadow looming over his legacy, a void has been created. Who will be the new face of kicking testicular cancer’s ass? I’d like to nominate myself. Because, you see, I have testicular cancer and we’re going to make this fun.

I know people are going to bristle at the words “cancer” and “fun” so close together in a sentence, but that’s my personality and this is my story. A couple weeks ago, I was annoying my co-workers by blatantly trying to massage my own back in the middle of the writers’ room; I had what I believed was a knot in a muscle and it was aggravating me endlessly. That night, I visited my girlfriend, Sarah, and, before I knew what was happening, I was on the floor, crippled with back pain. She took me to the ER – my first time ever – and after a seven hour wait, I finally saw a doctor. They ruled out muscle issues. They ruled out kidney stones. They gave me morphine and I started talking like a Daily Show correspondent. They did a scan and found a mass which, after some laparoscopic surgery to get a tissue sample, they determined was a germ cell tumor. As the one in pain, I didn’t really care what they called it – I just wanted them to make my back feel like Thor’s hammer WASN’T being whipped against it.

After one week of painkillers, my back felt great and I haven’t needed to take another pill. (But if anyone wants a cupcake with lots of extra sprinkles, let me know.) Considering the tumor is still there, this new pain-free Aaron is a miracle. But the miracle was accompanied by the official diagnosis: testicular cancer.

Let me note, for the record: I am not used to talking about my balls. My general rule is to avoid bringing them up in conversation. When people ask how my balls are doing, I usually just say “fine” and then change the topic to this week’s episode of Homeland. But I guess God needs me to break my rule, because my balls have been front and center (yes, also literally) in my life these last few days. Here’s the deal: this morning, at 7AM, I had the offending testicle removed. (And for the curious among you, let me just say that yes, I’m still symmetrical.) That was the first part of my treatment; the second part will be a few rounds of chemotherapy that zap the tumor in my abdomen. I’ll be rocking the Bruce Willis haircut for awhile, but I can always ask my co-workers to steal me some hats from the White Collar set. If you’re gonna wear a hat, go big, right?

My real treatment, though, is going to be writing. Because no matter what I’m doing, what I’m living, what I’m feeling… writing about it makes it better. Even when it’s about my balls. I’ve been beyond lucky to make my living as a writer and I truly believe that if I’ve been given cancer, it’s because I’m supposed to write about it. (My surgeon was named Dr. Fallas and my urologist is Dr. Sacks, so clearly this all a grand comedy.) Assigning the cancer a purpose may seem self-deluding from the outside, but I believe with total conviction that a whole crapload of good can come out of a little bit of bad. So if the cancer’s going to use me, I’m going to use it right back. Sorry, cancerous cells, but now you’re “material.” Get used to it.

The fact of the matter, too, is that every statistic is completely in my favor. Ninety-five to ninety-eight percent of testicular cancer patients end up completely cured. Like, back-to-normal-in-every-way (yes-even-that-way) cured. If my experience was a Joseph Gordon-Levitt and Seth Rogen movie, it would be called “98/2” and the stakes would be incredibly low (and the humor would be even more genitalia-based.) All signs point to this being nothing more than a speed bump. I still get to work with people I love on a show I love (Graceland coming to USA in June 2013!). I still get to live in a city I love with a girlfriend, friends, and a family that I love. I get to write, I get to joke, I get to laugh, I get to tell the story.

I know there’s a comfort in shaping personal experiences into a narrative. When we give our lives the shape of a “story,” we turn ourselves into heroes; our point of view becomes something like narrator-ly omniscience, everything we do and feel is validated by context. But I think the greatest comfort comes from choosing the ending; we pick the happily ever after, or the thematic beat that defines our moralities. Me? I’m going to try to always end it on the punchline.

You don’t need to wear a rubber bracelet for me. Just wear a smile. Or, even better: laugh. Because we’ll be talking about balls, whether I like it or not.

[For the next part titled ‘The Cooler Part of Chemo, click here] 

[You can follow more of Aaron’s Journey at his blog over here]

aaron fullerton

This is going to be a little bit of a different one. i ‘met’ Aaron online, as much as you can ‘meet’ anyone online [i think you can] and i don’t even remember how although it might have been through Hashtag Game tweets or some other comedy moment. And we got chatting, which is a little strange for strangers on Twitter. And especially when it turned out that one of the strangers is a writer for a popular tv show called Graceland [Aaron, not me.] And he was super friendly. And somewhere along the line i found out that he had cancer, or had had cancer, and had a blog about it and he gave me permission to use some of his posts.

Aaron clearly has a strong gift for writing and is also a funny guy and so despite these posts being about cancer [which is completely not funny and a total bastard, let’s be honest] there is a deep focus on the life behind. And as much as his form of cancer has a 95 plus percent chance of ending in complete freedom from it, i imagine the percents that are not guaranteed still contain enough strength to bring some anxiety and fear.

What i like about Aaron is he is real and rough and raw and it’s great because it really allows us to get a glimpse of a real life story, which is what Taboo Topics is all about. i am going to be sharing a number of posts from his last two years of journey, that i find particularly powerful/encouraging/uplifting/challenging, but i encourage you to go and check out his blog and subscribe and become an even closer part of his journey. Who knows? He may one day be writing one of your favourite shows.

Friends, i give you Aaron Fullerton and the appropriately named Aaron Laughs With Cancer

Laughing With Cancer, Not At It – Two years ago, after having the offending testicle removed, Aaron started to write.

The Cooler Side of Chemo – Aaron focuses on some of the things he is grateful for during treatment

Glimpses and Truths – snippets from three different posts that share some of Aaron’s insights, challenges and encouragements

[i wrote this post a week ago because i wanted to get permission from Ray’s wife Rhian before posting it, but am glad to be able to share it now]

UGH, Cancer.

i woke up this morning to the news that an insanely gifted man i had befriended on the Twitterer had succumbed to the brain tumour that had taken him hostage, and died a few days ago. His wife Rhian, had just shared the news on the Twitterer. What can you say? There are no words, but i hope that my message of strength and love in the midst of a no-word time were the smallest bit of encouragement to her.

ray

His name was Ray Ferrer and he painted with spray paint some incredible works of art such as these ones:

i mean this guy was ridiculously talented. Spray paint? This work is incredible. And do a little googling and see a bunch of his other stuff. Phenomenal!

And with a following of 30 thousand plus people, he still took the time to interact with the individual. Which is why i kinda felt a little bit like i knew him. We back and forthed a bunch, especially when he started tweeting with the hashtag 

And why this day has been a bit of a difficult day. Thinking of him and his lovely wife and their people, having to do life without him from now on.

That is a strong testimony to his wife, Rhian, who was that rock for him.

As i said, i have no helpful words. Each and every day i hate cancer more and more. i just wanted to take a moment to stop and give some recognition to a kind and gentle soul, with an exceptional gift and a lovely wife who stood by him right until the end.

Ray Ferrer. You will be missed. And celebrated. And remembered…

[For some other cancer-related stories, click here]

WendyandXylon

I don’t know about you but growing up I believed that old people and other people got cancer.

My gran passed away from cancer when I was in my early teens. So I knew cancer existed. I just didn’t think that cancer would be part of the story of someone young, or of someone I love.

I guess that’s the first thing I’ve learnt about cancer. It doesn’t discriminate. It will attack rich or poor, young or old, dark or light, male or female.

To be honest I never wanted to learn anything about cancer. But it’s hard not learn when eight months into marriage your husband is diagnosed with lymphoma. All of sudden instead of “love”, “dinner” and “honeymoon phase” our vocabulary was replaced with “chemo”, “oncologist” and “white blood counts”.

We were in our late twenties and fresh off a plane from a seven-week backpacking holiday across South East Asia when we heard “cancer” used for the first time to explain a series of everyday illnesses my husband had.

At first we thought, like the naive, young newlyweds we were, ‘It’s 12 chemos. There is a 75% “cure” rate. It’ll just be a hiccup’. Yes, the oncologists went there, they gave a cure rate not a remission rate. How hard can this be we thought? Six months and then we’ll have our lives back.

Six months of my husband throwing up at the sight of the nurses who administered the chemo. Six months of me having to coerce him into “just one more session”. Six months of waking up in the middle of the night to make sure he was still breathing and sleeping with thermometer in the bedside table to check his temperature never rose above 38 degrees Celsius.

Six months passed and it was over. But it wasn’t. Because the second thing I’ve learnt about cancer is that it never completely goes away.

Even once you think you’ve beaten it, it hangs in there like a child clinging to its mother’s leg, asking for attention every 6 months to one year when the calendar reminds you it’s time for that scan.

The results of the first round of chemo came the same day as my grandfather’s funeral. The chemotherapy hadn’t worked. Xylon still had cancer. So we re-adjusted our schedules to more intensive chemo, four days a week in hospital this time, and a month long in-hospital bone marrow transplant procedure.

While Xylon lay in hospital for a month I learnt that cancer comes only to steal and destroy but Jesus came to give life, life and more life. I learnt that prayer is more than a nice idea, that sometimes it means praying the unthinkable and other times it means using worship as an act of war against the enemy of our souls. I discovered that even on my worst days I am never really alone and that even in the darkness God will find me. And I learnt that Jesus is still reckless with hope.

Cancer sucks. I hate it. There is not getting round that. I wish almost daily that cancer isn’t part of our story. We’re almost one year on from his first clear scan and I still get angry about all that cancer stole from us.

Yes, it’s taught us some things I hope we never forget like how not to take time with loved ones for granted. Or how to grab hold of the life you dream of and not wait for “someday”. It has reminded us to hold possessions lightly.

And it has helped put most of our petty problems in the right perspective.

And it’s taught me that God cares about us. I don’t know why he allows cancer. And I get pretty angry about death (and then I have to remind myself that God hates death too). But somehow while I’ve held my husband’s hand through chemo and fevers and blood transfusions I’ve felt that God is holding me.

Don’t get me wrong; there have been days when I’ve wondered if God exists. God hasn’t appeared to me in a vision or whispered in my ear. But I’ve felt held, buoyed up by a hope that is not my own. I can’t really explain it but it’s been real to me.

I guess this is maybe the most important thing I’ve learnt in the almost four years since Xylon’s cancer diagnosis: when the rest of the world is saying there’s no hope, Jesus is standing there saying, “They’re wrong.”

When everyone else is questioning if Jesus really cares about the hard things we’re going through, I listen for his voice declaring, “Don’t listen to them; just trust me.”

Sometimes that’s all I have. And the longer I walk this road with Xylon’s hand in mine and Jesus by side the more I’m learning that is enough.

[Wendy van Eyck writes at ilovedevotionals.com for anyone who has ever held a loved one’s hand through illness, or believed in God despite hard circumstances or ever left on a spontaneous 2-week holiday through a foreign land with just a passport and a backpack. The various links within this post are back to articles she has written on those specific aspects of her journey]

[For other stories relating to different aspects of Cancer journeys, click here]

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