Take Your Tumors to the Movies: Deadpool

I love going to the movies. I sill believe in the magic of film and cinema, and the movies is a small joy that is there for me even when I feel at my worst. My husband and I bring up the armrest and hold hands the whole time.

The thing about the movies is that before being diagnosed, the depiction of cancer in movies wasn't something I thought of often. It was there in stories, as passing plot points, but something changes when you have it...you become hyper-aware of its use as a plot device. It is everywhere. I mean, everywhere. It is almost shorthand for "the worst possible thing in the world happened to this character" so you can accept why they help / kill / love / others. It's hard to explain since I don't remember all instances, but rest assured, the second they mention it my husband throws his hands in the air. He hates the reminder.

I saw Deadpool this weekend, knowing full well this was a big plot point, but it looked like crazy fun. I wasn't sure how they would treat it in a superhero movie and was kinda curious, kinda apprehensive. Usually, the movie cancer patient is a sad, withering, one-dimensional person - everyone talks real low, cries alot, soft-focus shots...you know the drill. I think of Cloe from Fight Club.

Deadpool was...surprisingly poignant. Yes, for a movies that includes insane violence and the words "...sandpaper dildo", it was surprisingly poignant on this front. I couldn't stop thinking about it at the end. Ryan Reynolds scenes with his girlfriend felt very real to my experience because they were multidimensional - there was fear, pain, and humor, and love, hope, all swirling around together. There was the apprehension of how to properly deal with a diagnosis that gives you no hope. He says at one point, it's not what it does to you , it what it does to those that love you. I have said the same thing, I can handle what it does to me- but seeing what it does to those that love me, that is the hardest part. And the fact that Deadpool got that, made me oddly happy. Seeing someone on screen handling late stage cancer with such a range of emotions, including humor, was nice.

Vague Spoiler Alert: So he gets promised a cure that will also make him superhuman. He willingly undergoes tremendous pain in the hopes of being cured, so he can come home to the woman he loves. It ends in fire, and we see him emerge from the ashes. Cured, but changed. Scarred from the journey. I teared up, because it felt like such an analogy. I don't care what hell I have to go through, I will do it if it just gives me the chance.

And if I can be a wise-cracking superhero at the end, even better.

Check out the PSA on early cancer detection from Deadpool. There's one for the fellas, and one for the ladies.

The Blog Where I Talk About Sex

I hope I don't make too many cheeks red, but I want to talk about sex. Yes, I said it! SEX.

Sex and intimacy are important topics, and they are often ignored in very important contexts because it simply not polite conversation. Not having those conversations though can have a real impact on people's lives- so I prefer to giggle nervously but just move forward.

Disability and illness are rarely included in the conversations we do have. We assume, falsely, that those facing medical issues, or those that are disabled, are asexual. Society has a way of mentally castrating people it no longer considers generally desirable. This is a difficult stigma, and surely a person who is just at the start of hardship might assume this is the role they must play.

A few years ago I bought my friend a book about sex and disability because she was rehabilitation counselor and I thought she would find it interesting, and potentially be helpful to another someday. While it sat in my house, waiting to be gift-wrapped, I looked through it. One diagram showed how to put a condom over a catheter. I was kinda shocked and a bit grossed out at first, but quickly realized that was the reaction most of us carry around and it is, plainly wrong. I read about how people with spinal cord injuries find that new erogenous zones develop when they lose the ability to feel below the waist. An elbow, a spot on their neck, they can cause feelings of orgasm when a vibrator is placed to them. This information was fascinating to me, and eye-opening. Why should anyone be deprived of basic pleasure and intimacy? Why should we assume that a person going through disability or illness isn't capable, or desires, of those most basic of human emotions and needs?

But internalizing that when you are that person is harder because that stigma is reflected everywhere.

When I first received the colostomy it was a blow to my self-image. I wanted to continue life as it was, but when my husband looked at me I assumed that he just saw the clear bag and its contents...saw cancer and sadness. I couldn't imagine anyone could find beauty there or desire that, even though rationally I knew better.

During one of my chemo's, the nurse navigator came over and - with a whisper - asked if I was interested in a book about colostomies and sex. I laughed, but she was genuinely afraid of offending me. I welcomed it though, no one else broaches the subject and I had so many questions and insecurities in my head. The book was It's in the Bag and Under the Cover by Brenda Elsagher. More than anything truly sexy, it was a wonderful collection of couples telling their stories of acceptance. Not only within established relationships, but new too. 

Just a week prior I had read a list of "Worst 1st Dates" and one was "A girl told me she had a colostomy." 

It isn't about sex really at the end of the day. It's about acceptance, of intimacy, cuddling with someone and feeling loved completely. It's finding a partner who can see past disability or illness and see the beauty in you.

The Virtues of Being An Old Fart

My mother looks in the mirror and whines about her gray roots. She squints at the wrinkles, and studies her face like a topographical map.

"I'm ooooold..." It's both a statement and a complaint against time. She punctuates it a second time with: "Ceci, I'm old." Her tone makes it seem as if she is revealing a new fact to me.

This makes me think about the people I see around me at chemo. I am a rarity, you see. People my age don't get seen very often in the GI clinic because we just don't get colon cancer as often. Part of me is suspicious that this elicits a bit more attention from nurses, a bit more encouragement, a bit more pity because I am "so young". They say it like that, they stretch it out and let it linger in the air.

Everyone around me looks about 50-80 and I must be honest, dear reader...that ugly part of my soul finds a tinge of jealousy. A tiny seed of anger and pettiness. It's terrible, I know, but I can't help but feel it creep into my heart. All I can do is acknowledge it, fight it back and swallow it down. I think of them raising their family, buying a house, going on cheesy cruises to the Bahamas, celebrating 30 years with their spouse, getting that promotion at work...they had life. Chances.

When I see grey hair, I see a life lived. I see stretch marks and wrinkles, I see a body that went places. I see creaky bones and stiff fingers, I imagine they did something. Whether they made mistakes or took those chances, I don't know- but they had them. And right now, it's what I want most. It's the only reason to fight. I guess, I am simply no longer interested in the cult of youth.

Your grey hair, those 30 extra pounds, those stretch marks...next time you lament having gotten old...remember that someone out there wants nothing more than that. Be proud of your birthdays, of your memories, of the people you have known, and all the facets and versions of yourself that you got to be.

It is a beautiful and truly envious thing.

Defiance and Unicorn Farts: An Update

For more than I month, I have known that a scan would be coming up to evaluate how treatment was working. I was very anxious during this time, as my head raced between all the possibilities. It could get better, worst, stay the same...

I can try to remain positive and upbeat, but I can't outright control what my body actually does. I have tried. In the quite still of the night, when nothing is around but your thoughts...I contemplate what this all entails, my future, those I love, and often find myself indulging bizarre notions.

I imagine...the white blood cells in my body all taking attention, being directed to my liver, and destroying the tumors with a flash of white light, sparkles, and the *ting* of a fairy's wand. It isn't something beautiful or mystical in a zen kinda-way, it looks more like those 1950's commercials for toothpaste or floor cleaner, where a little animation flashes and the housewife beams at her so shiny linoleum floors.

"Mr. Clean can make even the ugliest livers sparkle again!"

The nurses tried to prepare me to expect no change. The fact that it wasn't growing was a triumph in itself. But that wasn't good enough for me. It felt like the longer I fought this, the lower my chances. I wanted this out NOW. 5% shrinkage? 10%? 80%! My mind teetered between the meager and the impossible in a matter of seconds.

When we started, I was informed I had a KRAS mutation: in simple terms this meant my tumors would be somewhat resistant to chemo. I was told surgery would not be possible. Every bit of news I got during the initial prognosis felt like another nail in the literal coffin.

At that point, I committed myself to defying them. It wasn't that I mistrusted the doctors, but I knew they could only speculate what my outcome was against the statistics. Someone wins the lottery despite the crazy odds, but you got to play to win, no? I refused to ask for odds when I spoke to the doctor (I have seen them online without meaning to, ugh) but he spoke his words slowly: "possible....but a long-shot" and nodded as if to add "You understand...no?"

Pardon the French but... Fuuuucccck that! I got a husband to love, family to spend time with, and a goddamn elephant to ride in Indonesia or India.

This elephant right here...mine. I'll call him Tiny.

Thursday morning was my CT scan. If you have never had one, its a big donut that whirls around you and takes pictures of your guts. They inject a contrast in you that makes it feel like lava is flowing through you and they warn you that you will feel like your pissing yourself, but no worries, your not. Your swimsuit area is on fire, but no worries.

The doctor saw us that same day.

1/3rd he said.
Almost 30 percent smaller.

One of the largest tumors had gone down by inches! Such a dramatic response in only three months in was a great sign. He said that in two months I have another cycle and this would determine if I could potentially go into surgery for a liver resection. Or, we could do an ablation and fry or freeze them. (The caveat though, is that more than six months of chemo makes you a bad candidate for surgery, but it's not necessarily impossible.)

You have to understand:
 I was told that surgery was my only option for a "cure".
And I was told it wasn't possible.
And here we were, talking about surgery.

We were ecstatic. I'm not out of the woods obviously, and I have no guarantee that in two months surgery will get a green light, but having proof that things can change was a revelation. It no longer felt like hope was build from a foundation of pure defiance and unicorn farts, but had a real medical possibility. All the sucky chemo days, they were doing something. Progress existed and so did good news.

Finally, my linoleum floors are looking much brighter.

Those That Care for You

When sickness rears it's head, you really become aware of how much people love you. Your family, friends, and sometimes even strangers, rally around to send their love and well-wishes. But the caretaker is indeed the one that bears the brunt. The caretaker is there to make sure you got your meds, your comfortable, your eating, you can reach the remote control when it's like...just...rigghhht... there.

My husband, mother, and brother help me immensely.

My mother and brother take turns coming up for two weeks at a time. They leave their lives to take me to chemo, they do the grocery shopping with me and cook, help clean up. But beyond the tasks, they just provide much needed company when my husband goes to work (and a bit of peace of mind for him.) Each of them has their super-power too. My mom is positive and sweet, always looking to organize everything to be easier (even if I really don't want the black dresser in my closet and yes, I am planning to put more hangers in there, and please don't re-organize my wardrobe).

My brother doesn't ever wake up in time to make breakfast, but he has long, candid talks with me about the dark and ugly things that swirl in your head during these times. Getting those things out is cheap therapy, and his squeaky "I love you, sister!" is all I need some days to smile. When I was in the hospital, my brother spent long days and nights listening to my drug-induced rambling, handing me juice boxes, and even walking me to the bathroom and holding me steady. He did all of it with all the love and patience in the world.

My husband has endured the most though, he is here with me every day and night. He has to face the physical challenges, my emotions, as well as his. There are so many little things he keeps track of: He keeps an alarm on his phone to make sure I am eating consistently, he massages my hands and feet every day in the hopes it will keep the nerve damage away, he tests the water temperature before I can wash my hands so it doesn't hurt, and makes sure I take my anti-nausea pill exactly every 8 hours. He wakes up at 2 in the morning, pill and water in hand, to be sure I get it. At the hospital, when they gave me that jerk of a stoma, the ostomy nurse came in to teach us how to care for it. I remember how he asked all the questions, made sure he understood, and told me " Don't worry, I will always do this. You don't have to worry about it for as long as you have it." Every time he helps me with it, I feel tremendous gratitude that he can both help me deal with it and simultaneously, look past it. I wish they had a "Love Is" that said "Love is cleaning your spouses poop."

That's alot of poop.

The people that care for loved ones during illness, they need just as much love and support as the person with the illness. It takes a lot of energy, strength, to selflessly give oneself over to the needs of another. To see them suffer and feel the impotence of not being able to fully help. I understand this, and it's a constant reminder that every glass of water handed to me is an act of love.

As I said at the start, friends, family, and even strangers, have made an impact. From chicken soup, to cards, GoFundMe donations, care packages with helpful things, and just plain understanding...all these things show that people care. And that makes such a tremendous difference.

The Magic Yarn Project

I just came across an super cute initiative to provide Princess wigs to little girls who are currently undergoing cancer treatment. The wigs are made of yarn, adorned with flowers and glitter, and resemble each little girls favorite Disney Princess. I absolutely love how these gals are using their creativity to bring a little brightness into these lives.

I used to routinely donate my hair to Locks of Love since I knew someone out there would care about it more than I did. Unfortunately, it wasn't long enough when I cut it this last time- so I made a small contribution to the Magic Yarn Project instead, and I think you should too!

The money raised covers supplies, or you can donate yarn, and if your the knitting type- they take contributions as well!

Check out their website, donate, or share!
www.themagicyarnproject.com/

And Apply the Snake Oil Liberally on Your Colon....

Hearing about amazing remedies is common place, and easy to tune out usually, but when you have an illness- miracle cures come out from the woodwork from all directions. With cancer especially, whose treatment is universally known to be long, difficult, ugly, the potency of these claims is even stronger.

"There is a tea in the mountains of Venezuela..."
"All you have to do is eat 20 pounds of raw juiced vegetables a day, along with a coffee enema!"
"Eating up to 70 live beetles a day can cure cancer."
"Eating Dandelions cures cancer.
"Injecting Baking Soda into your bloodstream cures cancer."

The list literally goes on and I have heard all of these, and more, as viable treatment options.

Don't get me wrong, I am not saying that healthy eating doesn't help in recovery, or that the natural world doesn't yield curative powers. Pirates would have had a much better quality of life with just a handful of lemons. I mean, majority of our medicine originated there in some form or another before being harnessed into pills and such. That is not my argument.

My father told me that while his former girlfriend had cancer, they were given a glass jar with moldy bread and beetles inside. You had to eat +1 beetle everyday, until you got to 70 beetles on a day, and then you were cured! He said mixing them into ice cream made it easier to get down. I know how that cure ended, but let's not discuss it. 

The danger behind these supposed treatments are that they are treated as magic bullets, panacea. They tell you  "Chemo is poison! It's expensive and the doctors are getting rich of you!" They offer to be instantly cured by something innocuous, cheap, painless, and guaranteed! You know the saying though, if it's too good to be true, it probably is. A healthy, balanced dose of skepticism is needed when evaluating these claims. You can eat all the dandelions you damn please, but if you are foregoing treatment to do so- I have a feeling dandelions will be sprouting 6 feet from you in a short time.

Sure, people going through conventional treatment die. But, the lady drinking tea from a mountain in Venezuela and rubbing goat excrement on her stomach- I am going to assume that risk goes up. By a lot. That is why these notions are serious and to be considered dangerous.


There is always a paranoia that cancer treatments are being kept hidden by the faceless pharmaceutical companies and doctors. How would anyone keep that secret? How cynical do you have to be to assume every single person who does research, every single oncologist, all of they are greedy assholes that laugh at you as you wither away? At the same time, people let some crazy doctor in Italy inject them with baking soda (who, btw, believes cancer is a fungus!?) Why trust him? Because everyone wants an painless absolute. People want to be "in" on the fight between "us" and "them", whoever "them" is.

These doctors think your debilitating nausea is hilarious, and profitable.

Also, cancer is a constellation of diseases, not one. There is no absolute singular cure for cancer. If you have a genetic etiology, carrots aren't gonna fix that hot mess. They were supposed to make my eyesight better, and I am suspect of even that as I squint at my screen.

These alternative treatments always lack sources and are often anecdotal in nature. Some guy's aunt who had generic cancer ate nothing but radishes for 20 days and all the tumors were gone!!! The people behind these supposed therapies can even set up official sounding institutes and have "doctors"- but their claims don't have studies to support them, lack adequate tracking of progress, and rely on the few that survive without ever discussing how many didn't. If dandelions go through rigorous testing tomorrow and show they are the real deal, well, hallelujah.

My mom says to me "But its natural!" So what? So is hemlock. Doesn't mean it will help me. If anything, sometimes the supposed cure can be just as deadly. On researching the Gerson therapy at my mother's request, I discovered that daily coffee enemas have caused the death of over 7 people to date. Not a lot, but I for one don't want to die from a jittery colon.

Next time you read some article about the new wonder therapy for X disease, consider:
- Is it presented as a easy, painless alternative?
- Is it a cheap and commonplace ingredient? 
- Is it predicated on a nearly sociopathic distrust of the entire medical establishment?
- Can it cure your gout, arthritis, and amputated leg all at once?
- Is it an Italian doctor with a shaky understanding of what he's trying to "cure"?

And then, after you consider all these points, do your friends and relatives a favor and do not share.