Cancer is not a battle – for me

Cancer isn’t a fight for me. I’m not battling anything. It’s not a competition, there is no trophy to take home, and really, do we call people who die from cancer ‘losers?’ No, we don’t.

I am not being courageous. I am just a woman dealing with a curve ball thrown at my life. This is temporary. Everything we think we own or have is temporary. I am one of over 13 million people who found out they have some form of cancer last year. 232,000 women were diagnosed with invasive breast cancer and 60,000 with non-invasive DCIS, and that’s just in the United States. Those are big numbers. These numbers tell me that I am not alone. I am now connected to every single person with cancer. I recognize their sadness, struggle, and confusion as if it was my own.

There is a very intense and deep sadness that I have experienced with my cancer. My sadness doesn’t go away. It doesn’t stop me from doing anything, or make me wallow, and you wouldn’t know it was there by talking to me. It’s difficult to put put into words. I don’t speak it or wear it, I feel it.

There is no right or wrong way for anyone to deal with cancer. It’s a very personal journey and anything goes. How I handle it is right for me, and I try not to judge anyone else’s choices. I say ‘try’ because I am far from perfect and yeah, I judge people for what I think are bad decisions. Like my friend who thought he could make melanoma go away by doing coffee enemas and getting his tonsils taken out. He died within months and I was pissed for a long time about it. I write this and realize that I’m still pissed. But it wasn’t my life, and he did what was right for him. Like I am doing what is right for me.

 

 

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Knock, knock. Who’s there? Cancer.

No one is exempt from cancer:  toddler, grandparent, serial killer, neighbor, asshole, rock star, plumber, homeless person, new parent, cop, cashier. I am not exempt. You are not exempt. Cancer is like a monster creeping around the house, waiting to scare the bejesus out of you when you least expect it and then refusing to leave like an uninvited house guest.

The number of people I know who have or used have cancer seems to be increasing by the month. Off the top of my head I just counted 12 people. It’s becoming a common occurrence. We can chock it up to so many things and debate causes and treatments, but one thing is for certain; cancer isn’t going away anytime soon.

Me getting cancer is now what I call a direct hit. It’s one of those things that you truly do not understand until it happens to you. For me a direct hit is something that happens to myself or Amelia, someone who I live with and see every single day of my life. I love my close friends and family, but when something bad happens to them, it’s a little more of an indirect hit. At least it was prior to my diagnosis. Now it’s different. When even an acquaintance gets diagnosed with cancer, I feel like my heart is taking a direct hit. Now I understand. Now I get it.

 

 

 

Creativity and cancer

I have epiphanies all the time. Most days I have at least one exclamation of, “I have an idea!” or “I need to….”  This morning’s epiphany was pretty simple, but quite loud, actually it was booming so I paid close attention. It was this: I need to get better at the things I am already good at. I need to immerse myself in three of my favorite things: woodworking, cooking, and music.

Each of these three activities feeds me in a different way, but the one thing that ties them together is creativity, which is a daily requirement in my life. My daily dose of vitamin C.

Time moves differently with cancer. The glaring fact that we are all time-limited is magnified. Mortality is real and sometimes there is no rhyme or reason to when you die and how you die. But the fact remains: we’re all going to die. So how do I want to spend my time? I want to be in a constant state of learning and sharing what I’ve learned. Leisure time really isn’t for me; it never has been. Most people’s bucket lists include traveling somewhere exotic and drinking expensive champagne. This week I want to master a hand-cut dovetail joint, learn Japanese scales, and make miso from scratch. This week. Next week, something new.

My morning epiphany wouldn’t have come on so strongly had it not been for cancer. Am I starting to appreciate the role cancer is playing in my life??? I’m not sure. But I do know that I’m listening more closely to everything now.

 

Cancer and Star Wars

Social media has done a good job at connecting people who may otherwise never know each other. It also has the potential to really screw things up. It’s amazing the shitty things people can just pound out on the keyboard that they would never, ever say to a friend – or stranger – face to face. Most people would never go up and yell at a stranger, but somehow people feel like it’s ok to do so behind the safety of their little computer. Don’t be too proud about the technological terror you’ve created. -Darth Vader

It is so common to see people get bashed and hated on by something that excites them and makes them happy. Take Star Wars, for example. I will go see The Force Awakens and for two hours and sixteen minutes I will not think about my cancer. It will be a wonderful escape. Amelia will be happy. But people have to mock the movie and its fans on Facebook for some reason. I’ve got a bad feeling about this. -Han Solo 

I admit it, I have been a basher before. Harry Potter? Twilight? Role playing games in the woods with make believe magic powers? Yeah, I’ve made fun of all of that. I have bashed their joy. I was wrong. Your feeble skills are no match for the power of the Dark Side. -Emperor Palpatine

What does this have to do with cancer? Nothing. And everything. Life is short, and cancer magnifies that fact. Luminous beings are we, not this crude matter. -Yoda

Having cancer has made me a more compassionate person. I know I have to actively work on my outlook and judgement of others. It’s not enough to not speak it; I need to change what I think. I need to practice it. These aren’t the droids you’re looking for. – Obi Wan

My final thought: Don’t wait until you have cancer or some other negative life-altering event to have more compassion and actively work on your judgement of others. Do, or do not. There is no try.  -Yoda

And yeah, I kinda like Stars Wars.

Light Saber

Change is good

Cancer is changing me. I tend to move through things quickly, but cancer is a different story. I can’t move through it, it has to move through me. At the same time, I never realized how adaptable I am.  I’ve already adjusted to being bald. It’s not so bad, and do I tend to change my hair style every year or so. So this year will be the No-Doo.

It’s the process of losing things that’s hard for me, not the aftermath. While I’m losing things, I feel the utter sense of having no control and that something is being taken from me. I accept it when it’s done, but I fall apart during the process.

I am more ok with the idea that everything has an apparent expiration date: my breast, my lymph nodes, my hair. They all bit the dust sooner than I would have liked, but I’m ok with it.

Cancer has forced me to re-evaluate so many things and every time I dig a little deeper I find something new. I’m becoming someone who lives for the moment, I just wish cancer wasn’t the reason. I would have rather chosen that that path on my own, but I am grateful for the opportunity to challenge myself.

Life is fragile

Life really is this fragile. I’ve said it, I’ve seen it, I’ve known it, but now I am experiencing it. Sometimes it’s hard to accept that one tiny cell is tearing me apart. Being vocal about it helps. Every emotion I have has a purpose in this, even the negative ones. Now is not the time for silence.

All of our lives intersect somehow, somewhere, all seven billion of us. Even if we don’t know each other, even if we’re on different continents. The same things happen to every single one of us: we’re born, we live, we die. Death truly is the great equalizer.

When Amelia first asked if having cancer made me think about my own mortality, I immediately said no without even thinking. It was a 100% scared and reactive response, a denial of the true worst case scenario. There are things you don’t want to speak out loud or hear, words like metastasis. And words like brain, bone, liver, and lungs: those are the words that make you think of your own mortality. Those are the words I don’t want to hear. Those are the common places HER2 positive breast cancer likes to spread to.

Amelia and I are opposites in many ways. She is incredibly comfortable with death. She’s worked with death on many levels from toddlers to the elderly. I often call her a Guide to Death, because that is exactly what she is. She is the person you want around in medical situations. I am not so comfortable with death, but I’m much more comfortable than I used to be because of Amelia’s incredible perspective.

I can admit now that cancer does make me think about death. I realize that nothing is mine. I possess nothing. Everything I think I own will sooner or later belong to someone else: my house, my clothes, my truck, my banjo, my furniture. Some of these things already belonged to other people who are long since dead. It really is a circle of life and death, and in between we’re just borrowing time. Does it sound like I’m at peace with it? I’m not.

 

Expectations

When the shit hits the fan in life – and I’m not talking about losing a job or a wrecking your car. I’m talking about serious, permanent life-changing shit – we have to prepare for the many expectations that come with our new lives and the huge disappointments that will get in our way. There are people that you assumed would be there who just disappear. And there are the people who you would have never thought would be right there in the trenches beside you.

At first I was judgmental and irritated about the bubble that most of us live in. What, you don’t know anything about cancer?! What’s wrong with you people? But, now I think, Why the hell would you want to get to know cancer unless you really had to? 

Expectations can’t exist in cancer time. I am at the mercy of my surroundings, my doctors, my infusions, my meds, my side effects, my tidal wave of emotions. I can’t assume anything now. With cancer, there is discomfort in not knowing what the future holds, even though before cancer I was okay with not knowing. I even thrived on it.

Leah before cancer was very unpredictable. I am difficult to keep up with. I don’t do schedules, I don’t do lists. I kind of fly by the seat of my pants and somehow get a lot of things done. You cannot slow me down and you cannot pin me down. Well, goddamn if cancer hasn’t stopped me and pinned me down.

Giving in to the unpredictable nature of cancer is going to be the hardest thing I ever do. It’s like getting into a car and letting a stranger drive me around at 100 mph – with no seat belts. We have to trust strangers with our lives when we have cancer. Trust is something that is usually built, but right now I have to blindly trust the people driving my car.

The Community and the Sisterhood

I don’t really like crowds, cliques, groups, or labels. I’ve never been interested in being cool, hanging out with the ‘right’ people, acting a certain way, or following what everyone else does. Image and status have never impressed me. I’ve usually avoided labeling myself because I’ve thought that the minute I put a label on myself as anything other than ‘person’ I’m alienating myself from so many other people. It sounds simple, but it’s hard to pull off. I don’t mean this in a pretentious, I’m-an-individual-and-I’m-so-unique-and-special kind of way, because you know what? We’re all goddamn unique and special, every single one of us.

I’m no more special now that I have cancer, but now I’m standing in a different place. Now I’m standing with the Community of Cancer, and the Sisterhood of Breast Cancer. We’re all here, spread out over the entire world. We’re all on our own paths of angst, confusion, anger, sadness, grief, and terror, but we’re not alone; all of our paths merge. I read other people’s stories and I feel the cancer connection that we share. It’s a pretty intense feeling. I will embrace this label because my life is now forever changed. We all hope that our cancer is temporary, but the changes in our lives are forever. We will never be the same, and that’s ok. As my surgeon put it so well, “When this is over, you won’t be the same Leah, but you won’t be Cancer Leah.”

I want to make sense out of it, to try to figure it out, but there’s nothing to figure out and I have to learn to give in to this tumble. Cancer levels the playing field for all of us. It takes away any sense of control we thought we had. Cancer demolishes walls and strips away the things that keep people separated whether it’s gender, money, age, religion, sexuality, or race. Here we all are, naked in a room together. With cancer. We are now equals. There is strength in numbers, even if we are unwell. Is this what it takes for us to feel connected?

The other war

Each person with cancer or any other illness has their own individual set of strategies. We can call it anything we want: war, journey, battle, pit stop, path, detour. Our illnesses are our little unwelcome pets; we get to name them and treat them however we want. There is no wrong approach. We do what’s right for ourselves because in the end we want to feel better by whatever means necessary. No matter what we call it, we know this: we want our bodies to win.

The United States seems to be moving backwards right now. There are so many other wars raging: racial, social, basic civil rights. The list goes on. The war that’s pushing my buttons is the war on women. Right now, yesterday, and since the beginning of time, a small group of men (and some misguided women) have been trying to regulate our bodies. In 2014, there were approximately 500 restrictions introduced by state legislators intended to limit, control, or otherwise regulate women’s reproductive rights. Our bodies are getting talked about behind closed doors – and publicly – by Congress, the House, the Senate, the White House. Our vaginas are being discussed in legal terms. By the way, in 2014 there were no comparable bills introduced to regulate men’s reproductive health care. Zero. Zip. Nada.

Clearly, women are just baby making machines. We are nothing more than a womb to these people. They’re trying to pass more and more laws about what we can and cannot do with our vaginas and uteruses. They are encroaching deeper and deeper into our personal territory. When will they start legislating our breasts? Oh, you want regular mammograms? We decided we’re not going to pay for them until you’re 50. What’s that, your breast has cancer in it? No, you can’t have it removed; It’s against our new breast laws. Breasts first! What’s to stop these politicians from creeping 12 inches up our bodies? Women make 70% of what men do, politicians keep trying to re-define the word rape, aid is cut to low-income mothers, the life of a fetus is put before the life of the mother. What’s to say our breasts aren’t next?

I’m not sure who I’m more pissed at, the politicians or the people who vote for them. They keep working to take away my rights away year after year, bill after ridiculous bill. Billions of taxpayers dollars get spent to regulate things like a woman’s reproductive rights, gay marriage, and immigration, and we can’t cure cancer or eradicate the common cold. Good job, America, good job.

I’m on Cancer Time now

Acknowledging that there may be cancer cells floating around inside my body waiting to land, divide, and multiply is hard. I want to ignore it and not think about it but the thought nags at me throughout each day. There’s no way of knowing, no tests that could find such tiny things. Aches and pains that seemed normal before September 3, 2015 now easily turn into a quiet paranoia. I find that when something is really truly wrong, there is a stillness and calm that sets in, a dead quiet in my mind. Not really what I would call peaceful; it’s more like an intense focus on the situation, whether it’s that I drilled my thumb, cut a two-inch gash in my hand, watched Amelia’s face swell after a bee sting, or witnessed someone get hit by a truck. Panic doesn’t work in these situations – a purposeful calm does.

The fact is, I’m two stages closer to the real worst case scenario than I have ever been, and it’s an uncomfortable emotional state to be in. I am not usually a time-focused person, but cancer is now forcing me to think about things in more of a time-critical way. When will I be 100% recovered from surgery? When will I adjust to not having a breast? What will the scar look like in a year? What will chemo be like? When will I recover from chemo? When will I lose my hair? When will my hair grow back? When will a day go by that Amelia and I aren’t consumed by cancer? When will I feel normal again? When can I say I am cancer-free? When will I feel safe?

Preach it, Sister

If it looks, smells and sounds like religion in any form I can guarantee you I will not be interested in it. A “practice,” on the other hand, is something I can embrace. The word practice says something powerful to me. It says I’m still learning, growing, and evolving in mind and body. I take full credit and full responsibility for my massive screw-ups as well as my tiny triumphs. I am thankful and grateful to everything and everyone. But an unbending belief in something – in anything – is a thing I reject.

People can get incredibly devout and preachy on subjects they feel passionate about. To me this often feels patronizing and at times derogatory. Rigidity and the thought that there’s only one way to do something has never worked for me. Let me tell you how right I am: I’m vegan. I love God. I eat paleo. I do crossfit! I do yoga. Sugar is evil. Do you see my beard? White food is evil. I bike 50 miles every day at 5:00AM. I love God. I am God. 

I know one thing pretty well: myself. And I can get preachy, too. I’m going to preach about getting your damn mammograms every year from age 40 on. I’m going to preach about being your own patient advocate and learning about your diagnosis. I’m going to preach about taking as much responsibility in your treatment as your doctor does. I’m going to preach about politics staying the hell out of of my body. I’m going to preach about our fucked up health care system in the United States. I’m going to preach about women’s body image. Recovery is my new practice.

Food makes it better

No matter the life situation – good or bad – there is one thing that makes us all feel better: Food. The amount of delicious food that has been dropped off to us has been pretty awesome. We go to weddings, we eat. We go to birthdays, we eat. We go to funerals, we eat. We have babies, we eat. We don’t feel well, we eat. Eating good food makes problems seem smaller.

Thank you to everyone who made or dropped off food, or offered to make food (we only decline because we don’t need that much). But also thank you for the cards. Thank you for the e-mails. Thank you for the texts. Thank you for stopping by. Thank you for offering to help. Thank you for thinking good thoughts. Thank you for the side hugs (beware the left side). Thank you for the distractions. Thank you for the outpouring of love. We may not need a lot of help right now, but we greatly appreciate all of the offers.

If there’s one thing I’ve come away with, it’s this: a really, really good meatball greatly aids in the healing of anything, and could possibly end wars. Do not underestimate the power of a meatball. Embrace the meatballs! Plant more meatball trees! (Sorry vegetarians.)

I am not angry

I’m very aware that anger doesn’t belong anywhere in the cancer equation for me. It didn’t belong anywhere before cancer either. Anger to me is usually a byproduct of some other emotion. I’d rather figure out what my true underlying emotions are than to let anger bubble up through the surface and take me down some dark path at 100 million miles an hour. Anger is lightning quick; emotions are grandma slow. I like to follow speedy cars when I drive, but emotionally, I like it just fine hanging out with grandma.

I could see how people that don’t know me well could assume that I am an angry person in general. I have a way of marching through life that’s a little aggressive at times. I see this as a necessity as a woman. It may be 2015 but we still have to work at least twice as hard to be taken seriously and get paid 30% less. WTF? I will not be meek and lady-like. I will not be small. I will meet you head on, whoever and whatever you are. I will be myself. I’ve always liked the quote, “Well-behaved women rarely make history,” because it’s spot on. Women that are deemed “aggressive” usually get that other fun word attached to them: Bitch. But somehow I get away with it. In fact, the way assert myself is expected and accepted by the people around me. I’m not sure how or when this happened but somehow I got taken seriously. Strange that when a man walks through life aggressively it’s considered a positive thing.

I reserve anger for very few things, like the idiots I have to share the road with or turning it towards myself. My own worst enemy is and always will be me. Irritation and annoyance? Now those are my things. But even this is beginning to change. I don’t think I can justify feelings of annoyance and irritation now, certainly not anger. It’s an energy suck, and I need all my energy right now.