If Your Sad and You Know It, Clap Your Hands

I try not to hide sadness when I feel it. I certainly didn't on my last post. It's because I want this to be an honest place. Pretending everyday is peaches hurts me, and it hurts others by perpetuating dangerous expectations. I dislike to be called positive, and prefer to be realistic. Realistic with hope firmly held in my hands. I don't deny the whirlwind of feelings inside me, but try (key word: try) to remain centered once I acknowledge them.

"Positive" can become an oppressive force when used recklessly. It asks a lot of human hearts. It's not just me, a lot of cancer patients feel they can't give in to being sad, disappointed, without letting down those around them. Being "positive" can crush you. In extreme cases, showing sadness means that you harm yourself physically.

"Cancer can hear your sad thoughts," we are told by society, "and it will grow stronger from them."

 That pressure doesn't help, that pressure brings tired bodies and tired minds into even darker spaces.

As I usually point out, this extends past cancer. When we go through tough times we feel we have to put on happy masks. We tell ourselves that this protects our family, friends, ourselves...but underneath we fester. Crumbling edifices can't support their own weight, much less others.

In our heads, unspoken pains twist and turn into terrible monsters that don't always reflect reality. Being honest about feelings of insecurity, fear, sadness and disappointment take strength. Sometimes just acknowledging those fears shrivels them up in the light of day.

I feel better today about where I am in treatment.

I have an analogy I think of often, odd...perhaps, but one of those bits that stuck with me from reading random books. I studied philosophy and history throughout my life. One book I read talked about how the devil, in the Old Testament, was still an angel of god. He caused bad things to happen to people to divert them from their path, and through that manifest Gods will. I don't believe in the devil now, but it made me think about how things that look terrible on the surface may not always be so. Tragedy allows new opportunities to present themselves. Stagnation lifts. On the wings of chaos, comes a bit of beauty.

I hold new hope that these new drugs will cause a good response. Had I hung around for another year on the old chemo regime, making small gains, I might come out on the other side with a body too weak and damaged to go into surgery, even if I did had clear margins to resect. After that scan, I assessed my situation, faced my fear and reticence, and decided to start over with the same mindset I had at the beginning: Anticipate for the best response, minimal complications, and forge ahead.

Set me on fire...

...I won't tell you it doesn't hurt, that I don't feel fear, or sadness, but I will not back down until I get this done.

The Iceberg: Update on CT Scan #3

Before the News...

Today was my third CT scan. I knew the drill...guzzle own two contrast-spiked Coka Colas for "breakfast", sit, wait, get jacked into the machine via my port (somedays, I pretend I am a cyborg), and get ready to pee my pants. They warn me every time that I won't, and I joke that I already have.

We have been trying not to break down as scans near. We have planned going out to eat, the movies...productive distraction. We try to mediate expectations. I watch them, like balloons, float into the sky. Aiming steady arrows - pop - pop - pop - to break them down so that they will fall closer to earth. If i don't sacrifice a few, all of them will burst in the end.

My biggest fear, to be honest, is that even "good" is not enough. That 30%, 15% reduction...they won't change my fate. I feel like I am chipping away at an iceberg. I am impatient, I want more, a clear path out.

I think we can all relate to the wait. The anxiety of much needed news. A few simple words that alter the course of your life forever. It is a powerful moment.

...After.

We have assumed that the exercise, the energy, the small liver pains were signs of good progress. Unfortunately, my scan came out worst. We haven't lost a lot of territory, so to speak, but the tumors were "more pronounced" this time, and a lymph node nearby showed marked swelling. We hoped to ride out the current regimen for some time, but no such luck. I am on a new drug now, full dose again, and I can expect the usual menagerie of symptoms, plus uncontrollably shitting my brains out. Yay. *sarcasm*

Luckily, we were able to catch it before much progress was lost, but it does put a dent into your moral. The vague delusions of control that you have...all my balloons sagged and dropped to earth. My husband and I try to deal with the irrational feeling of failure and chaos, wildly bouncing emotions back and forth between us. It's a sad day, I won't lie. But I still hold inside me a feeling of hope, the need to forge ahead. A bump in the road, sure, but at least we have an option available. And talks are starting about testing my tumor for possible future clinical trials.

I sit here, morose perhaps, but in a few days I will try anew to populate my skies with beautiful colors.

Making Babies: On Infertility

I have a scan on Tuesday. I am, as usual, a bit nervous. My mind races with scenarios that get more and more optimistic, and when reality comes we deflate like souffles. The news could be objectively good, but we are impatient people.

Thinking about the doctor today I remembered a conversation we had early on. I can still clearly see him sigh, hesitate, and brace himself.

"There is a high chance," *dramatic pause* "that you will be infertile after treatment." I imagine that he saw a young, 30-something with a husband and assumed this would be a blow. Instead, I threw him off with a breezy "That's ok. What else?"

To me, the news wasn't as devastating as it might be to another woman. Since I was a child, I knew I was not destined to be a mother. It was a decision I had already made a long time before my epilepsy, and now cancer, put in the final nails on that decision. And now, since I had no clear idea of what my future was, the prospect of a child would be almost irresponsible. But I feel a strange relief.

Why? Because people are bizarrely invested in other peoples wombs. I used to get the "When are you having kids?" a lot as a young newly married woman. Telling people I was not interested was more trouble than you imagined. "You'll change your mind." "Children are a blessing!" and the most offensive: "I will pray to God that you change your mind" (I am sure he has better things to do!). It was an uncomfortable and circular conversation.

I feel odd relief in being able to just end the conversation with an "I can't". Although, this makes me think of the women that would grieve this. I wonder, how would I feel if I had been someone who wanted children? The questions and assumptions I have gotten as a child-free person are intrusive, rude, and potentially painful. And this was an active choice I made, so I can have a pretty thick skin on the matter. What if this isn't a choice? I would probably punch a lot of people in the face.

I resent the fact that women are painted as somehow "less than" if we are not able to have a child. I resent that this is a measure of being a "true woman". I resent that I am somehow "selfish". I have been more a mother to my brother than lots of woman who have been able to have their own biological off-spring. I resent that strangers feel they can argue with me on this point as if it were their evolutionary imperative. I resent that those who have not made this choice, as I had, are put through this same crap, and worst.

Will I ever miss my chemo-fried ovaries? In the long run, I don't know. I have, in some ways, made a Faustian bargain. I get to see another day in exchange for my hands (and my art), any semblance of  comfort, some bits of sanity, and ultimately, my fertility as well. At least I can be content with being a wonderful aunt to someone. But...that was my choice and nature just happened to align with it...but choice is everything.

So next time you go to ask a coworker, a stranger, etc. "Are you having more than 1?" or "Why haven't you had one yet? Children are joyous and beautiful!" I would implore you to shut your mouth unless you clearly know this line of questioning is welcomed by that person. Otherwise, your words could be, at best, annoying, and at worst, extremely painful.

A Tiny Boat in a Vast Ocean

Sometimes life feels like your out in the middle of an ocean during a storm, just you and your tiny rowboat...and there just went one of the oars. "At least" you think to yourself " I have the other one to knock myself unconscious with." And just like that, the ocean swallows up the other one.

In my case right now its disease, but the ocean is many things to many people. It is financial instability, uncertainty, abuse, it is the limitations of racism and sexism, bigotry, it is fractured families and personal stagnation. We all find ourselves in vast oceans from time to time. And it might seem like a pond to your neighbor, but when your inside it the horizons disappear and you just see water all around.

But, I do find a curious thing happening to me. As the ocean tides climb and toss me from wave to wave, I can still find an odd comfort. I find joy in the tiny cracks of my vessel. The waters might be vast, the sky might be black, but me and my tiny boat endure. I have become proud of it.

I am proud that my body has taken so much and still endured. Last Saturday, I got up and danced at a wedding. I wobble more in my heels now, but I can still do the Twist like no ones business. I am proud that I can still work pretty much full time and contribute. I am lucky to have relative financial stability now that we both work full time- more than I have ever had  in my adult life, even with the medical bills. I am grateful to have the family and friends I do, and discover I have more of both along the way. I have a partner that I know with all my heart is meant for me. All this overjoys me. All this can overshadow the difficulties and make those stupid clumps of cells in me look pretty insignificant in the grand scheme.

So next time your alone in the ocean, look at your tiny vessel and admire it's fine construction. You may be broke, but you have the skills to forge ahead. You may have been hurt, but you are strong enough to heal. You have family, or friends, or the confidence, the skills, and fortitude to help you brave the night. You have perspectives, strengths, and privileges in places you don't even realize.

Floating out there in the storming darkness, you might just spot another tiny oar-less boat out in the distance. You might see a girl, soaked to the bone, and wonder why she is smiling...

Because, my friend, this storm can rage all it wants...but it can't blot out the sun that lives inside me.

On Being a Selfish Jerk

Empathy. I have always considered myself to have some level of empathy. Maybe not above and beyond, but the usual level that strikes a balance somewhere between aloof and Mother Teresa. But like all people, I have quick judgements.

"That person should take better care of themselves"
"You really need to get ask the waiter twenty questions, lady?"
"That guy parking in the handicapped spot doesn't look handicapped."
"That bum needs to get a job."

We all have these thoughts. It is human. And when we have them we are making quick assumptions, instead of analyzing all angles. Why? Because they probably doesn't fit our evolutionary needs to consider how X things affects Mary, Joe, Lupe, and Hubert down the street. We are inherently selfish, and consider things predominantly from our vantage point in  the universe (which I remind you, is not a bad thing, it is just our view out of the narrow window we have available). Only through effort, love, and experience do we get a hint of another view- and usually through the vectors of our family, friends, etc. This is how we develop empathy.

Lately, I realize some of my actions may seem bizarre to strangers, since it lacks context to them. Snap judgements could be made about me which do not reflect reality.

I used to work in a restaurant. People who made twenty substitutions on their dish, asked 50 questions about what was in it, I saw them as picky and petty. And I wasn't alone in this view. But, I go to the restaurant now and ask twenty questions. I can't eat raw fruits or vegetables, and it usually causes confusion because that's not a recognized standard dietary restriction. "It has cilantro, are you allergic to cilantro?" It seems easy to answer "Yes" but then they wont tell me that maybe the sauce has uncooked items in it too. I substitute the side salad, the thing on the side, please don't add this...I have even had the manager come out to clarify my requests.

When I went to the supermarket and rode around on the motorized cart, I was afraid they management would tell me to stop fucking around on it, that people need it. And some days I can walk twice around the mall, and the next week our parking spot in front of the house can feel like a hundred miles. Would I be seen as faking it because my disability is not constant? "I saw her walking around, she's fine."

I used to sit by old people on the train that smelled strongly like pee. I was disgusted. And now, I have a colostomy bag I can't always control. Someone might sit next to me on the wrong day, and maybe I'll smell terrible. And I will know it, feel anxious to get home, feel embarrassed. I feel bad for that person now, I realize they probably have no more control over their bladder than I over my bag.

I abruptly change seats in public when people cough. I don't "look sick", so what must they think?

There is a picture making the rounds of these oranges at Whole Foods. You see it and wonder "what kind of lazy asshole would buy that?"

Its easy to dismiss it, but I have read blogs by people with disabilities who appreciate a peeled orange. They can't enjoy an orange otherwise. And now that I rely on my husband to put on my earrings or open a container because I physically can't, I totally understand. Hell, peel everything in the world.

I can go on. But the point is, I cant walk around with a shirt that says "CANCER!" any more than others can when dealing with mental illness, abuse, other disabilities, etc. Instead, I rely on strangers to consider that I am not a picky, weird, lazy asshole, but that there might be legitimate reasons for my actions. And that makes me wonder about the people of the world I have judged through quick assumptions...who also relied on me.

I can't, from my tiny window in the universe, see the whole story. But I know now beyond a shadow of a doubt, that what I see is an incomplete truth with invisible strings that reach far beyond my knowing. And strangely enough, that might be the most important bit of knowledge there is.

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.