Archives for category: Breast Cancer

Stories of pain, of fear.
Uncertain and dark places.
Sharing gives solace.

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……

A few weeks ago, spurred on by all the discussion surrounding testing, the SCOTUS decision, and yes – sigh – Angelina Jolie, I revisited the idea of genetic testing with my oncologist. It seems that in my initial meeting with him early in 2011, i neglected to tell him not only did my mother die of breast cancer, so did one of her five sisters. (I told him about my mother, not my aunt). This sparked some concern on his part and he suggested I see a geneticist.

So, last week, I found myself sitting in a geneticist’s office, within a very swank gynecologist’s office with modern furniture and a coffee bar, and lots of pregnant patients. It was surreal, to me, long past the age where children are a possibility. But also the swankness, funky new furniture in bright colors, a shiny coffee machine next to a multi colored play area for patients’ children.

My father was an Ashkenazi Jew – of eastern European descent. Right away that puts me in the high risk pool for BRCA genes. Although my cancer profile, and the fact that my mother had breast cancer weakens this likelihood (we don’t know if breast cancer runs in my father’s side). No, what interested the geneticist more was the fact that my sister had thyroid cancer, I had breast (in addition to our mother), and the size of my head. Apparently my head circumference is in the 90th percentile compared to Swiss women. Of course I am not Swiss, and I do not know how I compare to North Americans of eastern and southern European descent. Apparently, there is another mutation, PTEN, increasing my likelihood of breast, thyroid, uterine cancers, and carriers often have big head circumferences. So, if I am a carrier, this is the more likely scenario, according to the geneticist.

Notice that I have not yet been tested. Before i choose to be tested, I want to be absolutely sure I will act on the information, and for this, I want to speak to both my gynecologist (who did my surgery) and my oncologist. If i carry the gene, i will have to consider my actions.

Testing in Switzerland is not an issue – my Ashkenazi Jewish heritage puts me in the high risk group, as well as my family history. And unlike the US, there is no quibbling from insurance about payment. And if i carry the gene, I will likely have my uterus removed to reduce the risk of uterine cancer – this can be difficult to detect early.

Even if i carry the PTEN form of the gene, I may not have a prophylactic mastectomy. This is where i have to balance risk. And this is where i need to talk to my other physicians. PTEN does not carry as high a risk as BRCA – i think this is penetrance – you may have the mutation, but it doesn’t always express itself. I see my oncologist and gynecologist every three months. If i add to that an endocrinologist for thyroid issues, will increased surveillance be enough? The geneticist seems to think so. I’d like to see if this is a real possibility, so I am doing more research. I’m inclined to have the test, however.

I’ve already had breast cancer. Is my risk of another breast cancer high enough to warrant prophylactic mastectomy? Whether or not I have a prophylactic mastectomy will not impact my existing risk of metastasis – that cat is out of the bag. I don’t know, but i hope to find out enough soon to make an informed choice. Watch this space.

And I have other questions too. Could i be unlucky enough to have BRCA on one chromosome and PTEN on the other? That could suck.

the indignities of breast exams.

Two weeks ago I had my yearly mammogram. Squish and zap. No deodorant. Stretch that boob onto the shelf. Squeeze the armpit in there. Yeow! Three images of each boob. The radiologist was happy with them, I figured nothing warranted a second look, so I left there, and then, figured I would breeze through my gyn/post surgery appointment. No problem. It’s nearly two years since my diagnosis.

But, it’s not seamless. Turns out there were two wonky spots on the mammogram. It gets weirder. The spots each appear on one view only, and my doctor, an imaging expert can’t find a thing on the ultrasound. Ugh. I’m sort of scared, sort of hopeful. My doctor is hopeful but can’t dismiss it. Once you’ve had breast cancer, it has to be monitored carefully. I’ll write a more serious post about the feelings I experienced, but the whole medical testing process as it relates to breasts is surreal. Is it like this for testicles? I have no idea.

Next step in the process – a breast MRI. Do I know how to have fun or what?

A long time ago, when I was a chemistry student, I probably could have told you what an MRI does. All I remember now is that it creates a magnetic field and causes the hydrogen nuclei to align, and with repeated images and computer processing – voila – you have almost 3D images of structures. It’s a good thing that we have so much water inside, and that different tissues have different amounts of water. That’s what makes the MRI so useful. All those different water concentrations help to create representations of our internal structure.

But because it’s a giant magnet, you first have to remove all metal from your person, and make sure the staff know if you’ve got metal/electrical bits inside you such as hearing aids, pacemakers, artificial joints, shrapnel. And tattoos. Do tattoos have metal in them?

So anyway, there I was, undressed for success and in a lovely hospital gown. I have a blood test to make sure I can pee out the contrast medium. This too shall pass. A needle is placed into my arm so they can insert the contrast medium. Contrast medium is absorbed at different rates by different tissues. I can only guess that cancer cells light up the image, so it helps identify the buggers.

Have you ever seen movies where criminals receive lethal injections? Contraptions consisting of multiple bottles mixed into a single IV? When I saw the contrast medium/saline dispenser, that’s the first thing I thought about. But wait! I’m not a hardened criminal!!!! Not yet anyway!

Hooked up to the dispenser, I go into the MRI. Since this was an MRI of my boobs, I was positioned face down and my boobs fit into two matching square-ish receptacles that I can only describe as a bizarre duo of cake pans, lined with something similar to cupcake liners. Hands behind my back, they tell me to relax (As If!) and hand me a rubber ball to squeeze in case of emergency. Oh, and i have earplugs, too.

It’s a tight fit in the MRI, but not uncomfortable and I can relax a little. I’m glad I took that omeprazole, because the machine digs right into my diaphragm. Fortunately, I didn’t feel like eating, so there won’t be any barfing, because reflux would really suck in there. As it is, the whole thing provokes some anxiety.

Now the noise starts. All sorts of sounds. Pounding and banging, high pitched whirring, stopping and starting. The earplugs help. I’m thankful I’ve practiced meditation, it helps me relax and concentrate on the different layers of noise. I must have been in there for half an hour, I really haven’t a clue. It’s not comfortable, but neither am I fighting discomfort. And at the end, the noise stops and I hear water rushing, cooling the magnets.

I get up awkwardly. There’s no other way. I’m dizzy and have very little leverage. They remove the IV and I get dressed. I was supposed to find out my results then, but they were running behind. So I went home. A little numb, and very tired.

But that’s it. And everything turned out fine. My doctor called me the next day on her afternoon off to tell me the good news. Next post, i’ll talk about my feelings and the outcome.

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!

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.

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?

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.

The loss and regrowth of my hair was the most obvious outward sign of my treatment and treatment progress. Many women who have breast cancer go through reconstruction, but I followed the lumpectomy – rads route. No need to reconstruct in my case. So, for the end of the year – here it is – the year in hair.

When I first lost my hair, I swore that I would start to color it as soon as I could. I’ve colored my hair for more than 20 years. As it grew back, I realized that it looked quite good as it was. There is nothing wrong with coloring your hair, but there’s nothing wrong with leaving it alone, either. We talk a lot about being positive with our bodies, the way we look – being comfortable in our own skin is important. And I feel comfortable. Very comfortable.

Not sure I’ll post again till the New Year – we’re getting ready to move and I’m packing. So Happy Holidays! On to 2012, and thanks so much for reading this year. Your support and comments have meant so much to me….


The pics are in chronological order from 18.12.2010 through 23.12.2011 – my last haircut was 06.02.2011.

A little update. I actually have enough hair for a real haircut, so here it is – 19.01.2012…time to change my avatar too

And another update – the last is my hair, november 2012.


And so is the other one. Mammogram and ultrasound are clear. This is the first anniversary of my biopsy. I guess it’s the anniversary of my diagnosis too, though I didn’t find out till the next day. How do I count such an anniversary? Should I count the anniversary? Not sure….

I was thinking that I’ve come full circle, but that’s not entirely true. What’s more important though is that it doesn’t matter. It’s a different circle, a somewhat different plane.

I’ll write more later. Now, I just want to enjoy the holiday and finish this mad rush to pack.

Lots to be grateful for.