Archives for category: Thoughts

I have a strong dislike of holiday hubub. Large crowds make me cringe. When I was a child, I would often hide out in a quiet place during the holidays when there were lots of people in the house or when I was around lots of people. I’m not really antisocial, but I am actually a bit shy. And uncomfortable around a lot of people and a lot of noise.

And then there’s all that holiday convention stuff – you have to decorate, buy presents and send cards. No wonder people like me welcome online shopping and electronic communication. I actually lost a friend because I wrote a Merry Christmas email and the reply was that this might not be an appropriate way to communicate Christmas greetings. Although I was an early adopter. Now, I think it’s easier. But I don’t send cards much either now – every once in a while.

I don’t like a lot of visual and aural stimulation. Although I love being in New York at this time of year, I love to see lights and I like sappy Christmas movies. But shopping and noisy parties, crowded churches make me long for a dark space.

There’s much to be thankful for and to enjoy, but in measured doses. And it’s important to do what each of us really wants to do, not be bound by conventions and endless obligations. Be with the people that matter. For some of us, it’s a smaller circle than others.

I really don’t hate people. But I really value my quiet and solitude.

I admit it, I’m in a rut. I have tons of things to do, but I can’t seem to motivate myself to get things done. And the truth is, part of it is that I’ve become accustomed to doing the minimum. Some of it is rampant disorganization. I can’t really blame it all on breast cancer. Well, i’m trying to not point a finger at anything, just move forward.

I’m not unhappy, depressed, or anxious. A little bored perhaps, unmotivated and overwhelmed by what I could be doing. Too many projects, too easy to check facebook, play angry birds or solitaire. After a while, I forget my good intentions.

I am very disorganized. Before i had menopause and chemobrain, I had this. I am dyslexic and I have ADD. My working memory is a little wonky. If i don’t create strong associative pathways for the stuff I want to do in my head, I get distracted and do other stuff. I know everyone does this, but for people like me, it’s extreme. And the cognitive impacts of menopause, estrogen depletion, chemobrain just exacerbate it all. On one hand, i need the stimulation and associations resulting from reminders, lists, planning. But, too much information and stimulation results in anxiety, confusion, inaction.

Mostly I’m writing this to motivate myself. I’m really very happy with myself, my life. I just know i could be doing more, and it makes me a little sad and frustrated when I don’t get things done. It’s also pushing 30 degrees C (high 80’s at least), and i’m hot and lethargic.

But once again, the idea is to take the mountain of tasks and create small tasks with a high likelihood of success. To that end, i make lists. But sometimes i forget where i put the list, forget I made the list, get distracted. It’s not really evidence of cognitive decline – it’s how I’ve always been. There is an element of practice in any efficiency. Another strategy that seems to work is to do as much as i can for 15 or 20 minutes, and then revisit. A Bayesian approach to organization.

The worst thing to do, however, is judgement. Someday I’ll write about why being judgmental is detrimental – in my view, anyway. And yet, it’s very easy to point those fingers and turn them in on myself.

So, writing this helps, it’s some action. I’ve mapped out some simple tasks i can do close to my fan. We’ll see how it goes……

If you’ve been following my blog, you might know that i decided to write and post at least one haiku per day, for the rest of the year. They won’t all be clever – indeed i am sure that some will be banal and repetitive. Lots are going to be weather related or perhaps about my search for entertaining topics. I guess I will go back and add tags for the topics – at the end of this I’ll have a crapload of haiku(s). And some will quite simply be, crap.

But anyway. Haiku are interesting to me, a highly disorganized person who doesn’t like too much structure. The predictable structure of haiku gives me a framework and within that framework, i have an enormous amount of flexibility to create. It’s very freeing. So i know the boundaries and when i think up a haiku – whoosh! Write and post. I like it.

I’m even considering moving on to lists of things to do, or the evil to-do list. Now that is scary.

Unless you live under a rock, or outside the US, you probably know that since it’s October, it’s Breast Cancer Awareness Month.  The world resembles a sea of Pepto Bismol, with sparkly, shiny things, dancing pink bows, cheery sayings and smiling victors over breast cancer by virtue of early detection.

Don’t get me wrong – as a person who’s been diagnosed with and treated for breast cancer, I’m glad we’re aware of it. But awareness does not go far enough. There’s a lot more to the story. We don’t talk about the (pink) elephant in the room – metastatic disease. And until we can prevent and/or treat metastatic breast cancer, it will continue to kill.  We have to talk about it; we have to face the reality of it; we have to insist that research be directed toward metastatic disease.  And, we have to do what we can to support women (and men) with metastatic disease and stop treating these people as “treatment failures”, or pariahs.

I’m not just a person who’s been treated for breast cancer – my mother died of metastatic disease almost twenty two years ago, in January, 1991.

Twenty-two  years ago, my mother was anticipating her 65th birthday, and we were holding our breath, hoping against hope that her metastatic breast cancer would just slow down. But it was like wild fire – down one side of her spine and up the other, lots of pain. Finally, she was having trouble walking, and a scan revealed brain mets. Some rads and physical therapy helped for a while, but those damn mets continued on their relentless course. My mother turned 65 on October 25, 1990. She wouldn’t live another three months. They sucked the movement out of her body, she became unable to walk. Her motor skills went, as did her speech. She had tumors pressing on her spine, and in her brain. I can’t imagine what it was like for her. It was horrible for us. It was cruel. Death came as a relief in some sense…but it’s never really a complete relief – you always wish there was something more you can do – something different, if only there had been more time.

I suppose that every death leaves many things unfinished. Metastatic breast cancer – like many other chronic, debilitating, terminal diseases – is such a thief. It robs people of themselves, families of loved ones, time, energy, resources. Because we don’t really understand the why, we cast about for justifications to explain what happened. We blame irrationally and without sufficient evidence. But there is no rest – and there won’t be till there is more information. More research.  We must focus our efforts.

I’m going to snark about Pinktober regularly this month. But I wanted to write a little about the cost of metastatic disease from a personal perspective.  And I know it’s not just breast cancer – there are lots of thieves – I guess life is a little like avoiding robbery  from the universe.

A good way to start the month. Pass the Pepto, please!

Lily the Pup. A dog of unknown lineage. Ordinary. But special to us. She smiles a lot when she sees us. Here she appears to be laughing, but she’s yawning. This is what I get to see every day – her sweet face, funny purple tongue, I feel a lick or a nudge from her nose, and get an expectant look and a wagging tail. She’s independent, but still follows me all over the house. When my husband and I are in separate rooms, she positions herself somewhere in between. She loves her treats. She loves her toys. She loves us too, in her own doggy way.

She sheds. A lot. She’s scratched floors, ruined seat belts and head rests. But it doesn’t matter.

I miss her terribly when I’m away from her. It’s funny, isn’t it? A pet can make a huge difference – even an ordinary dog adopted from a shelter during a half off sale.

I’m a little late. That’s fairly ordinary for me. Marie at challenged us to post a picture of something ordinary each day, and reflect upon it. More at

I just returned from vacation and missed the first three days. Our trip back home was not ordinary, it was beautiful, filled with amazing landscapes as we drove from the Pyrenees in Spain through France and home to Switzerland. But this morning, I took Lily for a walk. An ordinary walk. We live in a large apartment complex, set against a hill…a maze of concrete terraces. At the back of the complex, the top of the hill is another hill where some ordinary cows graze. I don’t have a photograph, so I’ll just write instead on the amazing and beautiful ordinary cows.

Gray-brown ordinary cows. They have floppy ears with a fringe of lighter, yellowish brown hair inside – it makes their ears stand out. And their ears flap back and forth, batting away flies. Sometimes their ears move together, but often not. It’s comical and sweet. And their faces are beautiful, with their large dark eyes, and dark noses. But here’s the surprise – there is a ring of white around their nose and mouth. It softens their faces, I think, and enhances their beauty – maybe providing contrast to their eyes and noses.

I love to watch these cows…they are beautiful. Mostly they are placid, chewing away, or staring off into space, often all pointing in the same direction. Someone told me that the proportion of cows laying down in a field is predictive of the probability of rain. I don’t know if that’s true – I’ve never put it to a test. This morning, the cows were quiet, but sometimes, they are testy…pushing each other. And one of the funniest things I’ve ever seen – cows running across the field in full gallop, their spindly legs hurling their rectangular bodies across the field. Efficiently, and faster than you might imagine. And every once in a while, one cow will point a snout to the sky and moo, a deep, soulful sound.

In Switzerland, where I live, cows often graze on rocky, hilly, steep fields. I admire their ability to balance and graze on steep slopes and at high altitudes. One of the things that I love about living here is the diversity …dense housing, small towns and cities surrounded by farms, forests, mountains.

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.

It’s been a while since I’ve written.

I have this dress. I used to like it, but it has bad karma. Really bad karma, death karma. I haven’t worn it since December 21, 2010. Last year, I wore it in January to a friend’s memorial service (she died of cancer), in April to my brother-in-law’s funeral (he died suddenly) and the day in December I found out my seemingly benign lump was malignant. Originally we were going out to dinner with some of Marco’s new colleagues. But we went to see the doctor instead because they called me. Yuck. But we move on, we deal with stuff, and this is how I’m dealing with this particular thing.

I pulled the dress out of the closet. I had a sudden dark feeling and then decided to give the dress to strangers. I’m going to drop it off in one of those clothing bins.

But I am settling into my post-treatment life. We’re moving first week in January and so I’m preparing for that, packing boxes and sorting through crap. I have a very obsessive sort of packing scheme where I label each box with a piece of colored duck (not duct) tape corresponding to the the room where it will go. I also have recorded the contents of each box in a computer file. But for a person usually living in a dervish of disorganization, this is not a bad scheme. And I have time.

My angry boob has healed. The scar is healed. All of my follow up visits were good. My hair is growing fast, it’s a bit curly and I actually like the gray color, something I thought I’d never say, but it doesn’t really look that old on me. It’s actually sort of chic. Although sometimes it has a wild Beethoven-finger-in the electric socket look to it.

Arimidex is a bit of a challenge. The worst part is that when I wake up in the morning and at different times during the day, my hands are stiff and a bit tingly. My moods are cycling a bit, and my blood pressure might be going up. . These are all possible side effects, so I just have to monitor and deal with them. I don’t have hot flashes, however. I want to take the drug, because I believe it will help me given what I know about its action and my tumor’s characteristics. I’m also trying to move around more, which seems to help. I’ve been going to Pilates and I’m trying to walk more.

It is weird to be done with treatment. I have a lot of follow up still, monthly visits to the oncologist – mostly to ease my own fears while I transition from one type of a patient to another. It is a little scary, because I feel cut loose. It’s not that I feel negative, but I’m no longer in that protective bubble (somewhat illusory, I’m sure) of treatment and monitoring. So I’m happy to have a monitoring transition.

My days are no longer managed around treatments or doctor’s appointments and I feel better, so I have more time. Time to live, and enjoy things, but also time to be anxious and think about the future. So I’m going to try to think about stuff other than breast cancer if I can, and enjoy each day as it comes. I’ll still be writing here, but less about breast cancer.

Actually, I’m doing NaNoWrMo (National Novel Writing Month), where one writes 50,000 words in the month of November. I’m just going to start to write and see where it takes me. When I’m not packing boxes, that is…..

Some random semantics.

Personally, I like the word boob. It’s a palindrome, the same word spelled backwards and forwards. Efficient. Upside down, it’s poop. So it’s a useful word. It makes a nice sound rolling off the tongue… a touch of otamatopia (however you spell that). Say boob slowly, and it sounds rounded, like, uh, a boob. It goes up and down like the shape of a breast. The word sounds like what it describes.

I want to giggle when I say “breast”. By itself, it makes me think of romance novels, but it might be because I know writers of such, and the word breast is usually in there somewhere. Or it’s a serious word, clinical. Breast. And right now, I associate the word with “cancer”. Breast cancer. It’s a hard word that doesn’t roll off my tongue, but sticks. Breast.

Another word that people use is tit. Also a palindrome, but also a hard word. You spit out the word “tit”. I don’t like it as much.

When I say boob, it feels comfortable, familiar. A little funny, with rounded edges. Others may find it disrespectful, but I don’t.

Well, the good news is that radiation isn’t so bad, and I’m a quarter done. Nine down, twenty-seven more to go. Next Wednesday, I’ll be a third done, and the following week, I’ll be half done. Sometimes it feels like forever, but it goes fast. And here I am, eight months into the year. A long time, and yet, not really.

But who knew that I’d become so obsessed, nay, dependent on tape throughout my treatment? Not me, for last January, I never even considered the importance of tape in my life. Especially waterproof tape. I have at least 10 pieces of waterproof tape on my breasts and chest area. The tape covers the marks, blue and red, that guide my position on the table (red) and the targets (blue). Sure don’t want those to be messed up, and get a zap in the wrong place. Tape is my friend, despite its annoying propensity to peel off at the edges.

I’m grateful that the tape is waterproof too, because that means I can have a shower…. carefully. And the world is grateful too since I can’t wear any deodorant under my left arm. The tape is doing a good job of staying in place, although it’s checked over during my radiation, and a few pieces have been replaced. I noticed that the radiation room has a generous supply of both tape and markers. Without tape, I guess I would have a tattoo. The markers will wash away, and I can’t help but think these extensive markings make it easier to position, aim and zap.

Tape was important during chemo, since it held my picc line in place, and again, waterproof tape enabled me to have a shower. Perhaps the most novel use of tape was during my initial hair loss when I would stick a piece of packing tape on my head and use it to pull out falling hair. That was fun. We find our fun where we can.

Anyway, I was a little nervous about my first radiation. The table seemed a bit narrow, but I’ve not fallen off it yet, and the radiation techs are all very nice. I’m usually done in 20 minutes. Very efficient. Almost always on time, usually early. I’m often done with the day’s zap before my scheduled appointment. I refer to radiation as zappage, it makes me feel more like wonder woman and less like plant life.

Because my upper outer left breast is zapped, I balance on my right hip a little bit, put my arms over my head, close my eyes and breathe. I also count off the seconds. First zap is in front, about 25 seconds, then there are two zaps on the left side, one lower than the other. Each left side zap is about 15 seconds. The last zap goes through a sort of filter – a triangle of metal that weakens the zap on one side, to protect the non-breast bits there. (Some important non-breast real estate in my chest, obviously). As a consequence, the last zap makes a different sound, sort of a whirring. The rad onc doc explained this to me when I asked him about the noise and the timing.

The radiation techs are amused with my shoes, too. I have a pair of Vibram Five Fingers. Shoes sort of like toe socks, but great for walking with my bad knee. These shoes will convince you of our shared heritage with monkeys and apes. My feet look like monkey feet, or some swamp monster. I think one of the techs was going to buy a pair for herself. It’s good to have something to laugh at.

To be honest, I don’t really think all that much about cancer per se. I think about being tired, I think about grey hair, I think about trying to get more exercise. I wonder if the middle of my right eyebrow will ever grow back. I think about finding a new place to live in Zurich early next year. I think a lot about moving forward. I will have hard work ahead of me because I’m in awful shape from my veg-out over the last 8 months. But I don’t think about recurrences or cancer cells growing in spots around my body. And that’s very, very good.