A Fly in Love

This week has been largely...positive. There have been a few stresses - unraveling the bills coming in, fighting insurance, making heads or tails of the binder I keep for it. I swear, there needs to be an app for that! (Note to self: Build app; get rich).

I am on less chemo (not necessarily a victory, even though it might sound like it) but it does afford me somewhat of a respite from side effects. By the Friday after chemo I am usually on the couch in hardcore sleep mode. This time I organized my closet. My hands and feet though have peaked - there are ten ice cubes (or...fingercicles?) attached to me that feel gross (if they feel anything at all), and fail to open bottles, containers, and who have epic battles with buttons.

I went to work most of the week. Being there helps distract me from the weirdness of my life. I feel like I slip back into the world I knew, only everyone is super happy I am there. I try to pretend it just another day and they just really like me.

I tell my husband that my priority is living a normal life. I have started doing my artwork again, reading a good book, pursuing my ambitions. I think the fear that paralyzed us in the beginning begins to wear off and...slowly, we return to doing human things like us humans do. There are still hard times - but I tell my husband my fears and he tells me everything will be ok. And some days, we switch off...I hold him and tell him the same.

There is one thing I will say - and if I may ask permission to get mushy - is that I feel lucky to have Michael as my partner in crime. We all believe our spouse loves us (hopefully) but it's under extreme stress that you really see the raw person at their core. We are very different people, but we share an absurd and obscene sense of humor, a love of building forts out of our couch cushions, and just the right amount of bourgeois sensibilities. I married him pretty soon after we reunited, but I never looked back. Not once.

Fast forward to now. This man gets up every morning and makes me breakfast, opens every jar that may vex me, puts lotion on my hands and feet to stave away chemo's effects, and he kisses the spot where my stupid liver is every night - in hopes that it too will know its loved. The power of love will do what the doctors can't is what we secretly tell ourselves.

My mom's boyfriend told her that he has great respect for him since he found out that my husband helps me with my colostomy bag. My husband furrowed his brow. "I only do what any husband would do. Nothing more." I don't think he realizes that he is not "every husband." Not everyone signs up for "in sickness and in health" even if it was in their vows. In the beginning, I could not even look at my stoma, much less care for it. It felt like some sort of terrible horror movie transformation, like Jeff Goldblum watching himself turning into the fly. Michael would clean it, change it, make sure it was healing...he could look at that giant fly he now had for a wife and tell her she was beautiful. Even now, when he is helping me, I look at him and feelings of love rush through my brain. Feelings of awe, of joy...I see a man that loves me unconditionally.

And being loved makes all the difference to me.

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Our (unofficial) song from when we were kids. They took down the official video but a great song by Maxwell. It's made me think of him for the last 16 years.

Triumph over the Bagel: An Update on my Second Scan

I had my second scan yesterday. I was prepared this time, I guzzled two giant cups of spiked coke like a champ. When I got hooked into the CT Scan, I knew that the warm sensation I was about to experience was definitely not me peeing my pants. At the end, I went and devoured an omelette. All the while, I checked my work email. I got this shit down.

My husband and I went this morning to find out the results. If you read my last post, you know I wasn't all cool like cucumbers.

I had a 15% shrinkage. In my head I was a bit bummed, hoping for more, but our doctor made sure to assure us this was good. Early scans will show big progress, later scans are more of a slow and steady game. We will continue with a modified regimen until progress halts or reverses. There is a path ahead, but it's unclear, it twisty and turny. We just don't know what lays ahead till we get there.

To give you an idea, my largest tumor starting out was 8.2 x 10.3 cm. 10 cm is about the size of a freaking bagel in width. I had a tumor all around slightly larger than a baseball! And that is only one of several. Ewww. That same one is now about 7.6 x 6.3 cm (the diameter of a soda can). All the others are currently the size of a banana slice. (I am referencing a website on Cervical Dilation.)

I know its good but I am impatient. I just got to keep moving ahead. Everything is normal. I need for it to be. At the same time I yearn for the extraordinary. Can I keep my job and simultaneously live on a Caribbean island?

I am trying to keep up with work, my art, life.

On a brighter note, I picked up a new book for the first time in a long time. Mary Roach writes a weird science book and I love it. She first wrote Stiff: The Curious Lives of Human Cadavers which detailed the weird things that cadavers have been subjected to through history (for example, ballistics testing for the military in the days before ballistics jelly was invented - spoiler: it's a terrible test subject, or practice for plastic surgeons). This book won my loyalty, science is at its best when it honestly indulges your worst questions.

Her new book was Gulp: Adventures in the Alimentary Canal. This book covered the science of saliva and fart research, megacolons (Elvis died from constipation caused by a colon three times the size of a normal persons...the gut that he had in his late performances were not from eating fried peanut butter sandwiches. In fact, he could loose 20 lbs between performances by pooping alone. He died trying to do just that) and more intestinal oddities.


My favorite part? The colon cancer ribbon is a Navy Blue color. When I first found this out, I laughed that this was a missed opportunity to make it brown. Apparently, according to the book, it had been at the start (as bladder cancer was yellow) but patients complained that it was insensitive. Clearly I am not a majority.

Facing the Monster: An Honest Exercise in Being Un-Positive

I felt that momentary weightlessness that lets you know your air bound. I giggled, held on to my husband, and with a look, demanded he look at the airplane window as well to witness the earth going small, miniaturizing, people becoming ants. An hour later, I watched tiny ships make their way around a tiny Lady Liberty. From the air, New York was a dense landscape of buildings.

We were visiting my aunt and uncle at their new home in Long Island. It was, as usual, a beautiful and cozy creature, with tasteful furniture and a touch of Ukrainian accoutrements. To a lazy body, it was hard to leave the comfort of fireplaces and good cheese in favor of walking around freezing city streets.

On Saturday we saw my cousins new play, Hyena. It was genuinely fascinating, hard to pin down in words...and the talk of the house since. I was very proud of her and her accomplishment. Vicariously, I remembered the feeling of being young and wanting to eat the world, make it yours, to create.

It was a welcome respite to being home.

I haven't written in a bit, I have thought of it but...I have a second scan coming up on the 5th. It will determine what options will be available to me moving forward. A drug is being taken out of my cocktail, and next steps are complicated. One option can knock another out, all carry risks, there is little clarity from where I stand. This fact brings out the anxiety, the fear, the instability of a woman trying to remain positive as she is torn from the ground by a whirlwind. I have days of long calm, punctuated by an engulfing terror. It makes it hard to write witty bits.

I asked the doctor about the people I have heard- who live 10 or 15 years treating cancer as a chronic condition. It was a mistake, as he seems to wince. To the medical establishment, the hourglass is marked in mere months. I can't condense a lifetime into such a small place. So I negotiate with the universe - give me remission...give me 10 years...give me 5...give me one.

My husband does not read my blog- which is best. I think my honesty would be difficult for him. But it's hard to hear, I know. I showed my sadness to my mom, and I saw it just made things worst. I talk to my brother, he is stronger- but I am sure it is no easier. It's hard to convey these thoughts without feeling your swallowing the world. So you say nothing and slowly, you isolate yourself without realizing it.

Waiting the scan, you become hyperaware of little aches and pains. You become sensitive and cry at commercials. At work I make dark jokes about them having to find a replacement soon and that my co-workers terrible files structures are what gave me cancer. Maybe I make too many jokes, but they are my way of dealing with the streams of thoughts that haunt me. My jokes aren't jokes, I wonder often of the disrepair that I would leave behind if something happened.

Sweet moments are interrupted by terrible thoughts. Happiness is damped by the stray "What will happen to my stuff? Will my family have to sift through it all? I hope I have nothing embarrassing laying around...I wish I had finished this thing, that thing." These thoughts float by casually, non-chalantly, and are often irrelevant. They seep out of that tiny dark hole in my heart that just cannot be blotted out by all the positive thoughts in the world.

I still have hopes to reach what the doctors term NED (No evidence of disease). It's not remission exactly, because liver metastasis has like an 80% recurrence rate....but it gives me hope that I could spend a few years living normally...and maybe, beating those odds.

Despite this hope, my brain twists pretzels out of the future.  I don't want to give the impression I have given up, I haven't, but I do think about all the possible outcomes. I think, it tries to reconcile itself with death as a way of gaining the upper hand. It wants to feel as if, no matter the outcome, I don't let it win. What bigger monster is there than the darkness? If I can stare him in the face, say "I'm not scared of you- you can't hurt me" then I can stop worrying about when or if he will come.

Sometimes being strong is facing those fears inside you. It's scary, scary as shit, but it has to be done.

So everyday I tell it "I am not scared, you can't hurt me" and everytime I stutter, close my eyes, tremble, doubt, but I think I am getting better at it...I am getting better at it.

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I keep listening to this song. I know Mike hates that I listen to it, but in some weird way, it gives me peace.

Ice Cream Hurts Like a Bitch

"How are you doing?"

I get that question a lot and I, honestly, I have no idea how to respond to it anymore. I am never sure if the person asking wants a polite answer ("Good...good.") or a real answer (My hands are numb, I taste metal, and some days I experience highs and lows at breakneck speeds.) It is tricky social waters I try to deftly navigate.

How am I really? Honestly, I am in a weird in-between sort of purgatory. The doctor tells me my symptoms are on the milder end of the spectrum. This kicks my empathy into gear, as I imagine what the deeper rings of hell must look like and the souls lost wherein. And really, these symptoms do feel like bizarre punishments you would find in Dante's Inferno.

"At the 7th circle, your hands and feet will be on fire, ice cream will hurt your mouth (but still be delicious), and ants will fly out of your rectum! Muahaha!"

Which, if I can take a detour, dear reader, I will let you know that ice cream, physically, literally, hurts me. And I still can't stop eating it. I love Drumsticks - so imagine - I have someone remove it from the fridge, wrap it in a protective paper towel so I can hold it, and I take tiny bites. You know the intense sting of super strong minty mouthmash? Imagine a chocolate version of that feeling. How do dieters stand a chance?!

Where was I? Oh yes. Purgatory...

Aside from the hands, the bag, the ever-present discomfort...I am happy. I love my family, friends, my husband. I feel intense and real love. I feel supported. Lucky even. I realize that people go their entire lives with health and wealth, and still yearn to have what I have. But sometimes, I waiver...

This next month I get a second scan. It is a milestone and it kicks up a lot of anxiety and fear into my world. It is both hope and the dancing of hell flames on my door. If it goes well, it opens up other options for me, such as chemo-embolization. This is where they run a catheter from a vein in your leg up to your liver and then pump in some chemo. Fun, no?

Now, if the scan doesn't show great progress...I have options of maintenance. The word terrifies me because the possibility of remission slides away from the landscape. Like in those time travel movies, you see yourself fade from photographs that haven't been taken yet.

I have days where I worry, I break down and cry at small, insignificant things. Your optimism and fear collide and swirl into strange beasts. How can I feel so lucky and so damned at the same time? I laugh at death, I deny it, defy it, but I cannot pretend that it doesn't ever sting. I don't want to imagine my husband coming home to an empty house, an empty bed, and being alone. It breaks my heart.

It is surreal. It is complex...trying to express the weird slice of life I am in. Trying to express what I go through and still avoid pity, avoid being consumed or consuming others. That is why this blog helps me. It helps me avoid the awkward conversation, but lets me get all of it out.

As I think about it- maybe life is like ice cream, regardless of how painful it can be - I'm always happy to have it. So, I guess, I can say I'm pretty good.

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Bonus: A Real Conversation Between My Mother and I

Mom: How did you sleep?
Me: Ok, I had a weird dream that I shit myself.
Mom: Oh, when you dream about poop it means you will come into money!
Me: No, I'm pretty sure it just means I want to shit out of my butt again.

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.