Miscellany
I’ve got a longer post coming about well, finishing treatment and all, but for now here is some nice stuff I’ve found along the way that I wanted to share with yah’ll.
This was posted today via Livestrong’s twitter account (image source here)
Yup and don’t let the door bump your ass on the way out!
Also, some time ago a friend posted a link to a list that a woman name Lissa Rankin made called “10 Things I Learned From People Who Survive Cancer” (her original blog post)
When I interviewed women who had survived breast cancer for my art project The Woman Inside, I noticed that they all shared one remarkable thing in common.
They had all faced down death and decided to live every day like it might be their last. And then they all beat cancer.
The more interviews I did, the more I noticed that these women were living differently than most of the people I knew who had not been diagnosed with cancer. Here’s what I learned from those survivor women. Learning these lessons changed my life, and I hope they’ll change yours.
1. Be unapologetically YOU. People who survive cancer get feisty. They walk around bald in shopping malls and roll their eyes if people look at them funny. They say what they think. They laugh often. They don’t make excuses. They wear purple muumuus when they want to.
2. Don’t take shit from people. People who survive cancer stop trying to please everybody. They give up caring what everybody else thinks. If you might die in a year anyway (and every single one of us could), who gives a flip if your Great Aunt Gertrude is going to cut you out of her will unless you kiss her ass?
3. Learn to say no. People with cancer say no when they don’t feel like going to the gala. They avoid gatherings when they’d prefer to be alone. They don’t let themselves get pressured into doing things they really don’t want to do.
4. Get angry. Then get over it. People who survive cancer get in your face. They question you. They feel their anger. They refuse to be doormats. They demand respect. They feel it. Then they forgive. They let go. They surrender. They don’t stay pissed. They release resentment.
5. Don’t obsess about beauty. People who survive cancer no longer worry about whether they have perfect hair, whether their makeup looks spotless, or whether their boobs are perky enough. They’re happy just to have boobs (if they still do). They’re happy to be alive in their skin, even if it’s wrinkled.
6. Do it now. Stop deferring happiness. People who survive cancer realize that you can’t wait until you kick the bucket to do what you’re dying to do. Quit that soul-sucking job now. Leave that deadbeat husband. Prioritize joy. They live like they mean it.
7. Say “I love you” often. People who survive cancer leave no words left unspoken. You never know when your time is up. Don’t risk having someone you love not know it.
8. Take care of your body. People who survive cancer have a whole new appreciation for health. Those who haven’t been there may take it for granted. So stop smoking. Eat healthy. Drink in moderation. Maintain a healthy weight. Avoid putting toxic poisons in your God Pod. Get enough sleep.
9. Prioritize freedom. People who survive cancer know that being a workaholic isn’t the answer. Money can’t buy health. Security doesn’t matter if you’re six feet under. Sixteen hours a day of being a stress monster is only going to make you sick. As Tim Ferriss writes in The 4-Hour Workweek, “Gold is getting old. The New Rich are those who abandon the deferred-life plan and create luxury lifestyles in the present using the currency of the New Rich: time and mobility.”
10.Take risks. People who survive cancer have faced their fear and told it to go to hell. They know life is for living. Fear is powerless. And joy lies in taking risks. So go sky diving if you want. Bungee jump. Hang glide. Spend your savings. Live like you might die tomorrow.
Are you doing these things? Or are you waiting for cancer to test out how much you want to live?
Don’t wait for cancer, my love. Don’t tempt the Universe that way.
Be brave enough to live NOW.
Unapologetically and fearlessly living for today,
xoxo
Patient
Last December, I was diagnosed with a rare and aggressive form of breast cancer called inflammatory breast cancer. People abbreviate it as “IBC”. (As an aside, for some reason it is also something that hardly anyone ever talks about, which is quite strange and in fact eerie.) It is considered to be a different kind of disease than other forms of breast cancer. It also has quite different symptoms from other kinds of breast cancer in that although it can present with a lump, it usually also presents with a combination of other symptoms such as redness, swelling, “peu d’orange” (which means your skin changes in a way that looks like the skin of an orange), inverted nipple, and soreness. Sometimes it actually presents without a lump at all.
In my case it presented with redness and much, much swelling and soreness. Because I had never ever heard of IBC, I figured it was somehow a result of my period and the fact that I was in the midst of an intense month of school and work–staying up late drinking too much coffee and working on projects, so I waited awhile before going to the doctor.
The first doctor that I saw actually did not examine me, and then proceeded to tell me that it was a result of breastfeeding. I laughed. The man had my chart in front of him. I did not and had never had children. A small technical problem with his theory. He then told me it was due to a skin infection and referred me to a private clinic—something ridiculous in a country where we have universal health care.
Needless to say his “diagnosis” was not much help, but after much pushing and searching for proper medical advice, I finally found an excellent team of medical professionals (who I thank god for every day!), and a month and half later I was diagnosed with breast cancer—not at all what I had been expecting to have happen in my life, especially not in my mid-thirties.
I mention all this to give you some background, but also to bring up an aspect of being diagnosed with cancer, which is the mental construct of the “patient“.
When in that span of time of my life did I move over from my normal, everyday life to suddenly becoming a patient? For me the answer is complex, as I guess it is for most—hum… see I fumble with our language here because I am not sure what words I should put here: “most cancer patients”? “cancer survivors”?; both seem limiting to me. I often prefer to write “people who have gone through a diagnosis and treatment for cancer”, but that is a long phrase to write out multiple times. I guess “cancer survivor” works, but to me that carries with it much baggage and many imperfections.
Actually, for me the word patient has become a bit of an inner joke with myself. [uh-oh… the cultural studies major in me is saying that I’ve “re-appropriated” it.] 
See, when I enter the hospital for my many appointments, I accept that I am a patient. To me the word is fitting within this context mainly because being treated for cancer requires So. Much. Damn. Patience. So in those moments I am happy to agree—if somewhat sarcastically—that yes, I am patient.
But to me, as soon as I leave the hospital, I am no longer a patient. In fact I have even gotten in the habit taking a shower when I get home from the hospital–partly for practical reasons as it is a place of many germs and gooey things and I am currently immune compromised—but also partly as a symbolic gesture to make a break between that part of my life and the rest of it.
Furthermore… I must admit that I have never, in what is nearly a year now of treatment, thought of myself as “sick” (apart from my often twisted sense of humour). When I was diagnosed I remember remarking to my brother that the entire experience felt very confusing to me as one day I was my normal healthy self, and the next day I was a “sick cancer patient with an illness”. Thankfully, he very wisely told me “Well you are healthy! Look at yourself. Your body is healthy and doing great. There is just a small part of you right now that needs care, but the rest of you is doing great”. Ever since he said that, I started a little habit: whenever I was lying in the hospital for any kind of treatment, I would look down at my toes and wiggle them a little to remind myself how the rest of me was still here and still just as it had been and still healthy, dammit!
Even when I was in intense chemotherapy, I made an effort to make the mental distinction that what could easily seem like signs of “illness”—e.g. intense nausea, my hair falling out, exhaustion, etc.—was in fact NOT symptoms of illness, but rather side effects of the medications I was being given to cure me.
In short, chemotherapy for example, is designed to catch and kill fast-growing cells… so the loss of hair and problems with the stomach lining are a form of collateral damage in that the chemo sees them as fast growing cells and doesn’t know that they are good cells and therefore gets them by accident. I thought too, that to communicate this distinction to friends and family might help them as well, for example to know that the baldness is not because I’m sick, it’s because I’m getting better. 🙂
Some times it is easier than other times to keep these mental distinctions; sometimes, like when I’ve had to go into the ER, I’ll find myself exhausted, barely able to stand, in a room somewhere with florescent lights baring down on me, trying to tie my hospital robe so that it won’t swing open, and I’ll have trouble fighting for my sense of self and personhood as distinct from my position as “cancer patient”; and other times now I’ll find myself out of a stroll in the sunshine, with a perfect espresso in my hand, staring up at the sky and I’ll suddenly remember “Oh yeah, I have cancer—so weird”.
Anyway, just some thoughts for you… whether you’re going through or have gone through a cancer experience, either as a patient or someone close to one. Or even if you’re just a person searching for inspiration to take situations in your life and find new, creative ways to mentally mold them into how you want them to be. All the best to you all. xoxo
Hair
These days when I’m watching TV sometimes all I see is hair and eyebrows. I have hair and eyebrow envy!
You seriously never realize how much you’re attached to your eyebrows until you loose them.
…As I continue to step merrily into this story in an utterly backwards fashion…. I will briefly fill you in with a bit of background to all this:
My story with cancer began in December 2010, and with my particular kind of breast cancer (yes, there are different kinds… more on this later), the treatment starts with chemo first (rather than surgery)–it’s called neo-adjuvant chemo. So I basically started chemo 2 weeks after being diagnosed — and exactly one day before moving apartments! — in the week right between Christmas and New Year’s. Par-tay.
So… not much of an advanced warning for the chemo or to prepare for loosing my hair. Also it was freakin’ January so there was no way I was going to go and shave it all off preemptively as some people do.
Anyway, one thing I told myself and repeated to my family too at the time in preparation for loosing my hair was my realization that all these years, when I’d see cancer patients I’d always associate the bald head with the illness. As if the baldness was a symptom of being sick. But now, in undergoing treatment and learning about chemo, I realized that the hair-loss is just a by-product of the treatment. It’s really simple: cancer cells duplicate at an uncontrolled rate, so chemo is a way of stopping fast-growing and multiplying cells. It’s a systemic treatment, so it’s not going to only grab the fast growing cancer cells, it also knocks out the other fast growing (good) cells in the body — e.g. the things that our bodies regenerate quickly: like hair and our stomach lining (hence the nausea problems too). Anyway, realizing this kind of helped me with the hair thing.
In the end actually, my hair took awhile to go. It was only really noticeably missing after about 4 months into my chemo. This was because the first kind of chemo I was on wasn’t really the hair knock-out kind as much as the new one I’m on now (different kinds of chemo have different side effects).
It’s weird but hair can become a strange kind of commodity when you’re in treatment. Sometimes it can feel as if you have to be bald to be considered a “real” cancer patient, (haha… oh humans… yes, we really are capable of making *anything* into a hierarchy).
I was happy to not loose mine all right away, but that the same time in treatmentland it meant that it was more difficult to get people to believe I was actually a patient — even at the hospital, with volunteers or even other patients. Some friends who are on a pill form of chemo have said they have a similar experience because it doesn’t knock your hair out as much either. Being young doesn’t help either because people just assume you’re someone’s caregiver. But as my brother said “Well, look at it as a sign that you are looking good and healthy!”. So I’ve tried to view it that way rather than go all postal on well-meaning volunteers. 🙂
But you know, it’s so important to keep things in perspective. Loosing your hair really is a small price to pay for effective treatment. Like so many things in life there is always the possibility to take a certain situation and spin it — either to make it worse than it actually is, or even though the situation actually really does f*cking bite the big one, to play around a bit and spin it into something that’s a little more manageable mentally & emotionally.
So I’ve been playing around with different ways of thinking about the hair thing. That maybe I’m just going through a bit of a spy phase right now like Jennifer Garner… when I decide to wear a wig (or not).
Or as a very good friend pointed out, I can think of other eyebrow-less ladies, like Miss Jean Harlow…. the lady even looks like she’s rocking the chemo-turban in this one (with the fur-coat trying to over-compensate for the lack of “poil” elsewhere…hehheh).
All I can say is that when this is over and done I’m going to grow my hair back as long as it will go and enjoy each additional inch as I have never done before.
Garlic and sapphires in the mud
Well so, I have pondered the idea of a blog for about 6 months now.
I wrote that first post back sometime over the holidays and only now got around to posting it.
I’m just not entirely sure what this blog will be about. I mean obviously it’s about me being diagnosed with breast cancer and undergoing treatment and whatever, but I really haven’t been sure how to approach it.
I’m not the kind of person to write out every personal or physical detail of it all. So I’m guessing it will be most impressionistic — just my kind of random thoughts and reactions to things as they go along.
Although I’d never go and call this experience “sweet”, so far this experience for me retains the qualities of my previous life experiences to date: a sort of alternating and combining bittersweet quality.
So yeah, hence the Eliot: “sapphires in the mud”, baby.
Although I’m starting 6 months into the story (I was diagnosed in Dec 2010), a snapshot of today will give you an idea of what I mean by the above. It was:
– day 7 of being out at my family’s home, due to the intensity of my present chemo regime, and therefore needing their care and support and to not be at my place alone. (They are amazing)
– day 2 of my mom and I calling the EI people to try to sort out why I have to date only received a total of $25.00 for illness benefits, even though I have been on sick leave for nearly 2 months now. (This process is torture)
– also: although I had been having a good response to my chemo, today I had to really come to terms with the fact that it seems that my newest chemo (it is called “AC”) is not giving an effective response. This realization means that I have to step it up with my medical team and try to get some answers about where this is all going. (bleh)
And… though…
Contrast all of this with the extreme beauty of my family’s home and property — it’s like being in the country. And the true pleasure I am getting out of spending time with them; just hanging out like roommates, watching tv, going for walks, joking around, etc. They are amazing and I honestly don’t know what I’d do without them!
On top of that, although I’ve always been a pretty staunch pantheist, I’ve got to say that going through this shit has made me *even more* in touch with just how fucking much I love nature. It is so instantly healing for me, it’s unbelievable.
I can take no credit for these photos, (and for some reason they are displaying VERY small), but these are some scenes from my family’s home. The first is their annual visitor: a beautiful duck (usually with his mate by his side). And the second is, believe it or not, the view from their property!
visiting duck
- sunset
c is for celeritas
c, a letter also used to stand in for something our society still has a lot of trouble dealing with and coming to terms with: “the big c”. see, many of us are not even able to say it a lot of the time… cancer.
naming this blog was kind of random. I tried to find a word that described speed, because these days I’m moving at the speed of light. and in the end I came across a c-word to describe my experience of “the big c-word”.
a handful of days ago I was diagnosed with breast cancer—this was not what I was expecting. this was not what I was planning for my life these past months as I’ve pursued music school, work, making my own music, and enjoying friends and family.
I was diagnosed a week after I turned 35. this was not how I expected my 35th birthday to be. so it goes, I guess. it hasn’t really fully set in to me yet. it still seems unreal.
I’ve made this blog to try to reach out to you in some way. maybe you’re a friend or family member, or even a stranger who’s trying to figure out this stuff for yourself or someone in your life. either way I hope it will be helpful to you.
I am pretty tried and true introvert, so this is my way of keeping you in the loop without me having to add “heart attack” to my health concerns from me being overwhelmed. jo-king.
yes, this blog will include jokes. some might even be in slightly poor taste! honestly, in the time so far that I’ve been dealing with this, humour has been one of my biggest allies. so consider yourself warned.
you might also find some crassness and slightly bad-mannered language. these, well, what do you want, sometimes you need to swear, so yah.
I realize I haven’t told you much yet in the this first post, but I’ll get around to it soon enough.
I will leave you, though, with one thought … something I thought of a little while back while dealing with a previously difficult thing in my life, I thought: “Wow, this is some pretty random bad shit!”, and it was true, things were pretty bad, but honestly and truly, a couple of seconds later I was forced to admit that if life could bring me “random bad shit”, that it could also, equally bring me “random good shit”. and if there’s one thing I can say about this experience so far, it’s that although much of this definitely fits squarely into the first category, so far life has also be bringing me ample examples of the second category as well. well, so it goes.
c is for celeritas 