Taboo Topic: Cancer – Journeying with Aaron [Testicular Cancer] – Part Glimpses and Truths

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]

Taboo Topic: Cancer – Journeying with Aaron [Testicular Cancer] – Part The Cooler Side of Chemo

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:

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]

Taboo Topic: Cancer – Journeying with Aaron [Testicular Cancer] – part Laughing With not At

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]

Taboo Topic: Cancer – Journeying with Aaron [Testicular Cancer] – Intro

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

Taboo Topics: Infertility – meet Melanie and Willem

Answering the ‘baby’ question

The way I work through things is different to how many others do. I experience something, think and pray about it and when I feel that I’ve heard God about something, I write about it. Sharing what God has taught me in challenging situations is like the ‘acceptance’ phase of grief. This blog post has been several months in the making and tells the story of something that we have battled with in 2012. But in the end, there is great hope.
A strange thing happened after Willem and I got married. Babies started to act differently around us. They’d giggle and smile at us and coo adorably. We would never hear loud wailing or witness tantrums, only sweet parenting moments like a mother and baby giggling together or a father taking his daughter out for a stroll in her pram.

It was like a conspiracy – these babies sensing our newly-married-ness and using cuteness propaganda to convince us that we wanted one too. They’d look at us with an expression saying, “Have one of us, one of us.”

Then, the family and friends joined in by asking us questions like, “So when are you going to have children?” When you start dating everyone questions you about when you are going to get married and as soon as you get the wedding band, the baby question comes up. It’s like people are constantly pushing you into the next life stage. They have good intentions, but sometimes they aren’t aware of the pressure that places on people.
Willem and I have been married for five years. We have our own place, secure jobs and a steady income. He’s in his early thirties and I’m in my late twenties. This makes us prime candidates for the ‘baby’ question. I have even had a friend tell me that my biological clock is ticking so we should hurry up! So, why haven’t we started a family yet?

We can’t.

That’s the simple answer, but the journey to this answer has been anything but simple. It started over two years ago when Willem and I decided that we were ready to start a family. We were emotionally, financially and spiritually ready to enter the next life stage – parenthood.

Almost immediately, life became all about schedule and watching the calendar. We changed our diet and tried to get healthier. Life became about sacrificing anything that could get in the way of us having healthy children. I even refused to take any medication that wasn’t safe for pregnant women in case I was pregnant. I made mental lists of pregnancy symptoms and every hint of nausea became a sign.

It was an emotional time of negative pregnancy tests and anxious prayers. It was so difficult to be disappointed every month. During this time of heightened health awareness, Willem discovered a lump in his testicle. It was malignant – he had testicular cancer.

He had surgery to have the lump removed. Thankfully, they managed to remove all the cancer but he went for radiation treatment as a precautionary measure. It was the most difficult experience that we had been through as a couple (you can read about how we got through this time by reading my blog post ‘The One you can cling to.’)

Willem’s treatment finished and all his blood work came back clear. Earlier this year we had a scare, but, praise God, the cells they were concerned about were benign. We felt comforted by the fact that the cancer was gone, and that the treatment wouldn’t have affected our ability to have children.
But still, I was not falling pregnant. In our desperation, we decided to get professional help. We visited my gynaecologist and Willem’s urologist and went for several tests. Willem also went for a biopsy. In a two week period it was discovered that Willem’s body does not produce sperm cells and that our chances of having a baby are very close to none. The only possibility we have of conceiving is a very expensive and invasive surgery with a very slight chance of being successful.

It’s difficult to describe how I’ve felt since getting the news. I’ve gone from feeling devastated because I’ve always had the desire to be a mom, to feeling guilty for not being strong enough for my husband whose own sense of loss was magnified by my sadness. I’ve had mornings when I just wanted to stay in bed and cry.

I have learnt that I am not strong enough to deal with difficult times but that God is the one who is strong and I’ve needed to draw on His strength daily.

Our friends, colleagues and family have been so amazingly supportive. Our church family has been so wonderful with their prayers and encouragement. The first place we went to after we got the bad news was church where our pastor’s wife prayed for us. It was just what we needed – to stay God-focused during such a painful time.

I’ve had people tell me not to give up, that it’s God’s will for us to have children. Others have encouraged us to adopt. It’s been tough to really figure out what to do. I really felt strongly that God wanted us to have children and I’ve had prophetic words from others backing that up. I started to question whether I heard from God or if it was just my voice, or whether He meant that one day we would adopt and that’s how we’d become parents.
I’ve had to let go of the schedule, ignore the calendar. It may seem strange to find this difficult. For two years I had made trying to have a baby a huge priority. I’ve had to let go – and it’s been hard. I’ve learnt that it gave me a sense of control and being able to have this control made me feel more secure.

The truth is that we can’t control this situation. There’s nothing we can do to fall pregnant. This is out of our hands now. It’s been very frustrating…but also freeing in a way. We have to take a step back, there’s nothing we can do. We can only leave it up to God. After months of pain, I feel at peace with this. I feel secure in trusting God with this matter.

There are times when I do get emotional about the situation and all the pain floods back, but I then run to Him for comfort. My focus is on entering into His rest – a place where I don’t forget His promises amidst the negative situation I’m in. He has promised to give me life, and life to the full (John 10:10.) He has promised to prosper me and give me hope and a future (Jeremiah 29:11.) Whether these plans include us becoming parents, or not – they are perfect.

So, if someone asks me when we are going to start a family, I will say, “I don’t know.” I don’t know if we will conceive naturally of if we’ll adopt. I don’t know if it’ll happen next year or when we’re in our forties. All I do know is that I trust in a God of the impossible, in a God whose timing is perfect.

It’s all in His hands now. And I’m finally okay with it.

I’d really like to thank my dear friends who have been on this journey with us- friends who I have confided in from the beginning; friends who comforted me when I’ve struggled or had moments of weakness in the marking room, who have asked me if I was okay when I needed to vent. Thank you for your support and prayers, thank you for your understanding and patience. You are amazing blessings.

[to connect with Melanie or follow her and her writing, you can visit her blog here]