Today is National Cancer Survivor’s Day. I guess “national” refers to the US, but what the hey. I’m one of these people too.

I’ve been inspired to write by Marie at Journeying Beyond Breast Cancer, a really super blog. (Reminds me that I need to start a blog roll and I’ve been really sloppy about linking my blog. Ooops!

Today’s post, about Reframing Cancer Survivorship inspired me to think again about the framing of cancer.

Almost exactly a year ago, I wrote a couple of posts about the war metaphors, and I’m going to borrow heavily from myself. So the transitions might be a fuzzy and incomplete.

For background, Susan Sontag’s Illness as Metaphor and the first few chapters of of Lakoff and Johnson’s Metaphors We Live By (the stuff about characterization of metaphors) are great references – a bit esoteric, propeller head stuff, but still, worth the read.

I have a problem with the whole War on Cancer/Race for the Cure/Cancer Survivor thing. Military frames play a big part in medicine – we fight disease, we win or lose wars against this, that and the other thing, and we survive. So the assumption is that you can win or lose against cancer (and other diseases). Winning is a cure, and losing is death or maybe recurrence. But also, as Sontag points out, cancer is evil, wicked. The enemy. Those of us with cancer have this evil in our bodies. It must be exorcised, excised, poisoned, removed, stopped. And treatments do this – chemotherapy aims to cease cell division and thus growth. Radiation targets, blasts, shoots. You’ll hear lots of people talk about the “slash, poison and burn” method of cancer treatment, pretty much the state of things.

The problem is in our bodies. Does that mean there is something intrinsically bad about us that has caused this evil to invade our bodies. Invasion, takeover, etc, etc. I don’t like the idea of assessing blame when the cause is so poorly understood. While some of us may have a propensity for cancer, I believe that its development is still probabilistic.

I want to help my body heal. I don’t want to kill parts of my body, and I don’t want this conflict within. I continue to search for the words that I am comfortable with, but I still can’t find them – war and battle images are too strong.

As it happens, war and disease seem to mirror each other In the 21st century – even in the late 20th, we began to experience conflicts without a clear-cut enemy. Think Vietnam as one of the first. Maybe even earlier wars had this – I am not a student of military history.

After the cold war, we lost our bad guys – no more communists. Who are the guys in the black hats? It’s no longer clear. Just as cancer becomes a chronic disease that is treated multiple times, war becomes a series of engagements, interactions. Blasting the enemy off the face of the earth becomes less effective, so often because the good guys are blasted away too. And this is a metaphor of chemotherapy. Especially with the older anthracyclines and the other stuff like cytoxan (alkalyzing agents? ), “good cells” such as white and red blood cells, mucosal linings in the digestive system and mouth, and hair are killed off during cell division. Chemotherapy as yet does not differentiate well between cancer and non cancer cells – it seeks out, finds and stops cell division no matter the sort of cell. It is rather like shooting fish in a barrel.

I still don’t like the idea of war in my body. Fighting is so ingrained into the language of disease. Sometimes I try to treat, manage, deal with it, rather than fight. I am happy to be “strong”. Now, however I view strength as listening to my body, and taking care of it – getting enough rest, eating well, and making sure I call my doctor when I don’t feel well. Not letting myself suffer needlessly. I am giving my body all the resources and strength it needs to manage the disease. It sounds so awkward. Fight is more active, quick, clear. But cancer is anything but clear. And I refuse to be called a victim.

So then I had the idea of incorporating the phrase “Make Love, Not War”.

With your body, anyway. And hopefully with someone you love, but that’s a different blog!

Sometime near the middle of my chemo, I started to look forward to my treatments, rather than fear them, or be bothered by them.

I told my oncologist this and he said that so many patients look at just the toxic elements of chemotherapy. And yes, it is a bunch of poison being loaded into your body. But this is how we treat the disease. We don’t know quite enough to single out individual cancer cells and kill them off. Not yet. Maybe someday, as medicine, like everything else, evolves. I remember Dr. McCoy on Star Trek talking about the brutality of 20th century medicine. He’d probably say the same about medicine in the early 21st. Remember how he’d just take that little metal thing and it would buzz, diagnose and treat? You didn’t remove a speck of clothing, either, or mess your hair.It probably rearranged the cells and made them happy again. We cringe when we think about the brutality of 19th century medicine – no handwashing, little anesthetic, no idea of sterile procedure. Medicine has certainly progressed since then. Although people still need to wash their hands. And if you live in the US you have to fight with your insurance to cover your treatments, it sounds a lot like a war. Haven’t had to deal with that in Switzerland yet. Yes, I know I digress. It’s part of my creativity. ;-p.

As I thought about this more, I was thinking of how this perspective (and I’m sure I’m not the first to think about it in this way) differs from a cancer as war perspective. When we think of cancer as war, and fighting, we are at war with our body. The treatments are violent, cells are killed. But I like to think of this as loving myself enough to care for myself, and to do what I need to to separate myself from my cancer, or potential cancer. And it’s still killing cells, but it’s more like separating out the potentially harmful cells and getting rid of them. Like trash removal. Or maybe organization where you get rid of what you don’t need. There’s nothing wrong with tossing stuff out. Maybe it’s not necessary to have a metaphor or an image, just think of it as loving yourself enough to take care of things. Although metaphors simplify the thought process – so there is a need to consider how we frame treatment processes and think about developing new metaphors – and maybe someone has already. I’ve not been trolling the literature these days.

For now, though it’s enough to say that loving yourself is better than fighting a war inside your body.

Various pictures of our dog, Lily the Pup. Most taken in our old apartment in Belp. She spends a lot of time sleeping and generally looking beautiful. Wears a wig well, too. Likes to eat, but have no pics of that.

My various plants from Belp, mostly in 2010, almost all arranged and planted by my sister Eileen. Beautiful, aren’t they?

We had the most amazing view in Belp. Here are some views between 2007 and 2011 when we lived there. Lots of beauty in the sky.

Two years of my head

Two years of my head, April 2010 to April 2012. Cancer dx was December 2010, a couple of days after the second picture top left. Most pics are from 2011, except for the bottom row – those are all 2012.

I’ve been moving ahead with life post treatment. Doing a little activism, hanging out in social media, making life decisions, you know – the usual stuff.  My hair continues to grow like a weed, I have more energy, and I’m more active. All in all, pretty good. I feel good.

These past two weeks have been my quarterly medical extravaganza, as I call it. Trips to primary care, my gyn-surgeon, my oncologist for a checkup. The news is all good – Arimidex does not appear to have much of a negative impact – certainly cholesterol, blood pressure, yada yada are all fine – actually quite good.   I have some stiffness in my joints – in particular, my hands are rather stiff and my right hand little finger is recalcitrant. It doesn’t like be part of a fist. Sigh. So much for boxing. More immediate, however, is the fact that I cannot make a fist and pound on the knife to smash garlic. So, I’m learning to use my left hand to smash down the knife.

Even my knee has been improving. Left knee has very little cartilage on the inner joint surface and I am looking at a replacement at some point. But for now, I’ve been doing a lot of physiotherapy, walking, and the knee has felt quite a lot better. I walked a lot over the weekend, and might have overwhelmed it, however.

On Monday I went to the oncologist. Again, everything was fine.  As he said, I am “healthy”.  In cancerspeak, I’m NED (No Evidence of Disease). And I had a Zometa infusion. Zometa is a biophosphonate, which, if I understand this correctly, is an antibody that helps strengthen bones and gives a little added protection for the prevention of bone mets.  Breast cancer, especially hormone positive such as mine can keep on giving years after with distant mets. 

That’s why it’s critical to encourage and support more research into metastatic disease, and to support women and men with metastatic disease. But I’ll write more about that soon.

Treatments like Zometa are used twice yearly in patients who are at risk of bone loss, more often in patients who’ve actually got bone mets.  I guess I still am a patient in this sense.  Oh well. I’ll get it twice a year as long as I’m on Arimidex (the estrogen eliminator) to keep as much bone as I can. And the infusion itself was fine. A little wiggy after the infusion (which contained my favorite steroids), but made it fine home on the train, and fine to sleep. Ok yesterday morning, too.

But at some point yesterday, both knees began to hurt_like_hell.  Hard to get up. Left knee worse than the right. I have meds for pain, and I took a small dose of steroid, so now it seems to be improving. Sucky way to start the day, though.

I have a huge stash of movies, books and endless hours of amusement on the internet. I’m making myself get up every hour at least and walk around the apartment. The more I walk, the better it feels. I am stretching when I’m sitting still. I’m doing as much as I can to make this last as briefly as possible.

The dog is enjoying a sleepy day too… she’s sacked out on one of her 3 beds. Hmmm… I have only one bed. What’s wrong with this picture?

It occurs to me that this blog is in need of a little reorganization. I can’t find past posts easily and I want to include some new links…. so for the next few days, deconstruction, derangement and reconstruction!

 

Boobstagram. Is this what we’ve come to? Let’s show pictures of boobs to raise awareness about breast cancer. And how does this work exactly? The founders of this site rather pompously announce that they will raise awareness in a fun rather than fearful manner by showing lots of boobs, and thus contribute to both primary and secondary prevention.

We don’t know how to prevent breast cancer. The two biggest risk factors are gender (female) and age. Sex change and suspended animation don’t cut it.

You want to look at boobs? No problem, look at boobs. But don’t cover it up with disingenuous talk about awareness. It’s what it is… Another disembodied female form – boobs in space. Nameless, faceless boobs. Just drool at the boobs, don’t worry about the person behind the boobs. If you visit the facebook page, you see are comments like “bigger is better”. What has that got to do with prevention and awareness?

If you want to understand the toll of breast cancer, especially on young women, there are more worthy pictorial images, images of the entire person, not a random pair of boobs. The scar project shows young women affected by breast cancer. You want to talk awareness? Look there.

Today’s HAWMC challenge is to select a theme song.

Here is my theme song. It’s an interesting choice for me, a fairly non-religious person, but somewhat spiritual I suppose. At least I believe in the power of internal thought to calm. I think we take meaning from events and use them to make sense of confusion.  Early on in the breast cancer adventure, I found myself sharing dates of importance with my mother’s experience of breast cancer more than 20 years ago. I wrote about that earlier – you can read it here….

https://3lainess.com/2011/01/24/one-of-those-twilight-zone-things/

I’ve been re-watching the TV series “The West Wing”, and there’s an episode where one of the characters is talking to his rabbi about the death penalty. In the background, a woman is singing a prayer, the “Hashkiveinu”.

It’s a beautiful prayer, asking for peace. Here is a link to the article where I found the text – there are many other links too…

http://www.beingjewish.org/magazine/winter2001/article5.html

“Hashkiveinu Adonai Elokeinu l’shalom,v’ha-amideinu malkeinu l’chayim. Ufros aleinu sukkat sh’lomecha.V’tahkneinu b’eitzah tovah mil’fanechah.V’hoshiyeinu l’mah-ahn Sh’mecha.  


Lay us down to sleep in peace,Eternal One,our God,and raise
us up, our Ruling Source, to renewed life. Spread over us the shelter of Your peace. Set us aright with good counsel from Your holy Presence, and save us for the sake of Your Name. Shield us, remove from us any foe, plague, sword, famine,and woe. Remove any spiritual impediments, either from the past or the future, and shelter us in the shadow of Your wings. For You, O God, are a gracious and compassionate Ruling Force. Safeguard our coming and our going for life and peace from now to eternity.” 

Here’s a version from a shul in Pittsburgh. You can also find the West Wing clip –  episode 14, season 1.

http://www.youtube.com/watch?v=l64fNfWKPjU&feature=related

I love the way the music sounds, mystical and minor, beautiful.  I love that it refers to a gracious and compassionate God, that it focuses on the present and asks for peace and rest.  And that’s something we can all use.


Best conversation of the week! (HAWMC 7 or 8 – I’ve lost count ;-p)

M and I (M is my husband) are in the car – I’m taking him to the train so that he can catch a plane and go off to a conference: 😦

Various soppy goodbyes

And then, M looks at my sleeve and says

“Your sweater is on inside out”

“Oh yeah, so typical.” I roll my eyes and laugh.

“It just proves we were made for each other” (he’s been known to wear clothing backwards too).

And that’s it – no criticism, just something to laugh at and enjoy and appreciate. Why I love him so much. ❤

Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? Then go to
(http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.

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Day 9 of the HAWMC
poster text – stay real and enjoy stuff

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http://bit.ly/IpIzNy

Day 10 of HAWMC – Letter to myself at 16… (yeah, ok I did it at day 8)

Don’t worry so much, although  it’s your nature to worry. And worry fuels your curiosity, and your inquisitiveness. So worry is a good thing. But still, you don’t need to worry quite so much.   There is a lot to look forward in this life – in your life, and you’ll do a lot of things to be proud of. Don’t worry about doing everything. No one can do everything. But try to get things done – albeit imperfectly. And focus on now. It’s the best place to be.

Don’t stress about your diet so much. Don’t try to loose weight and then eat when you don’t succeed. Balance your diet the best you can and go outside a lot. Walk, walk, walk. Drink water. Don’t let what people say about your weight bother you. I know it’s hard and it’s hurtful, but there is more to you than that. Don’t even worry about loosing just 5 pounds. Don’t eat when you feel bad, either. Learn to eat when you’re hungry. But it’s not a failure – it’s who you are.

Write as much as you can, and think. Enjoy your thoughts.  Allow yourself to be amazed by beautiful things, saddened by unkindness, untruth, wrong.

You have some very good friends, don’t worry about having a lot of mediocre friends.

It’s so hard to be a teenager, so much awkwardness. Remember that you are a good person, smart and kind. You’ll do good things. You’ll make people laugh, too. Don’t worry about things being perfect either. Nothing, and no one is ever perfect.

You’ll be happy. Remember to laugh and smile.

It’s hard to learn to love yourself, but it’s a good goal to work toward.

Check back, I’ll probably add some as I think of them….

Make your threats into

Opportunities and you

Will feel much better