Sunday, November 22, 2015

the news around the corner, 5 years, and my personal mortality curve, or: Wherein I try and catch you up on everything

Sometimes it it good that we don't know what kind of news is waiting around the corner. Until about a year ago, I was a healthy person, with only the usual colds and allergies in my health file. Then, in October 2014, I received a cancer-diagnosis after finding a lump in my breast. The diagnosis lead to several months of treatment, which were concluded by a cure stay for recovery and rehabilitation.

A month ago, I was arriving back home from Mallorca, feeling rested after the cure in September, and the additional days of island time, and looking forward to normality.

I still feel the side effects of the long time of treatments, of chemo and radiation, but altogether I feel good, with my energy returning. "We made it," was the general feeling of the two groups I became part of during the time of treatment - one is the art therapy group, the other the group of friends from the cure stay.

Then came last week. Which brought the news that one of our art therapy group - my closest friend there - has liver metastases. She felt that something was wrong since a while, but this she didn't expect. She wasn't even in the cure yet. It was a blow, to all. (I blogged about it last Saturday, two posts down, the news arrived the day before Paris happened: Paris skies and more troubled news)

It is one of the big fears that is part of cancer: that even when you did all you can, went through the operation and the chemo and the radiation, there still is a risk remaining. It's odd to put life in statistical number, but that basically is how the risks get measured. To make it more complicated, each individual case of cancer is different, and no one can tell you which side you are on.

So bascially, in my case this is:

With just the operation, the chances of my cancer returning is 50%. Which is about the general average chance for breast cancer returning after the operation.

The pro for me is that I found it early. The con is that it is not on the slow-growing, not-aggressive side. Pro is that it was well-capsuled, without blood vessels leading into it. Con was that the rim of it did touch the breast muscle (some years ago, that would have meant a complete operation, to be safer). Big pro was: no lymph nodes affected. I didn't even realize how much that meant back then, after the docs told me the bit of news after the operation.

So: 50%, personally and generally. In our times, and in countries that provide the health care for it, the treatments for early stage breast cancer, with the combination of chemo + radiation + medication, make it possible that this risk can be lowered by about 40% to 45% percent, to a rather low level of 5%-10%. Which is about the average risk of getting breast cancer.

So things look good. (Well, relatively good. just like everything gets a bit relative when you deal with it. Just to think that about every 8th woman gets breast cancer is more than scary).

There also is an official point of being registered and counted as healed and surviving: that isn't after the final treamtent sessions - but after 5 years. So basically, it is like: your immune system failed in catching the cancer, and the docs then try to catch all cancer cells - the one in the direct tumor area with the operation and radiation, and the ones that might have spread with chemo therapy. And then it's wait-and-see-if-it-worked. If all went well, all cancer cells were caught and either cut away or radiated or brought to cell death with chemo therapy, and you live happily ever after, or rather: with the usual risk of dying that is part of life, only that it's a bit higher after cancer.

There are online websites that allow you to figure the numbers for your personal diagnosis. Here is how mine looks:

There are a lot of different cancers, and therapy plans, and medication options - so the 5 years both are a practical time span (because you aren't cured after the last radiation, but only if the treatments really worked, which only time can tell). And the 5 years help to make all studies and cases comparable.

So, for me, with the core factors of my diagnosis, and with standard treatment, I am in the 10% cancer mortality range, and I now also know my life expectancy: 79. (And yes, it feels weird to look at such curves).

I knew all that. It's what rings in your mind when you start treatment, what lets you agree and get through chemo and radiation. And when you completed that, it's what you lets you start the follow-up therapys, in my case hormone therapy. Basically you agree to all the docs have to offer as treatment for your case (sidenote: not all need chemo. and more about the hormone therapy, and statistcs, below).

When I returned from the cure time, and started to get back to "normal", I knew that my normal would be a different one than the "normal everyday" of before the diagnosis. That's one of the reasons for the "Making November Mindful" idea.

The daily mindful practice, for me it helps to bring balance, and to create a more peaceful "normal".

And there was a sweet event upcoming: to celebrate that we made it through all the treatments, and met each other during cure and turned into friends, our group from the cure stay wanted to meet up next weekend. The Christmas Market in Stuttgart would have been our place to go, and we had rented a nice holiday appartment so that we had time and space together. All was booked an planned. Then, last weekend, after what already was a difficult week, the news from one of our cure group came: her cancer is back. So that makes 2 in a week in both my close circle of friends.

She is thirty. 30.
But cancer doesn't care about age. And really, each life is precious, no matter the age.

So we now switched plans. And will go and meet her together. And be together, and catch up, and share our experiences, and probably also cry together, but also laugh together, like we always did during cure.

It is scary, this week. Even though both aren't in the found-early-no-lymph-nodes-affected-group. I am just glad we will meet up. It's good to have this support, for all of us.

Parallel to all that, I am having my first check-up dates. And try not get afraid. Here's a passage from a mail I wrote during this week, about both good news, and bad news, and dealing with fear, and how a friend thought that our chemo sessions or the recent occassions of meeting might be sad and sorrowful, but they aren't really.

"The good things, they are so important now in this time of bad news. It’s the same when we meet up in our group: we start with the good things. My friend asked about Mallorca, about the sunshine there. She tells about her cats, and about things like finding that article of her former professor which lead to good memories of her study times.

We talk about the difficult things, too, of course. But we always also talk about the good stuff. It’s always been like that, during the blood checks, during chemo, that the themes move through the whole spectrum of emotions. That someone shows photos. That we laugh. You don’t want to walk around in a “this is all so tragic” mood for days and weeks. I guess, even on the difficult days it’s more the conclusion “it is like it is”.

And yes, it’s unfair. And such a devastating illness. But if you spent your days arguing in your mind with it and with fate, you miss the beauty the days hold despite all. And it doesn’t help. It’s like in the quote from Etty Hillesum: if you want to have some peace in this troubled time, you actively need to help to create that.


It’s what we talked about on our walk yesterday – the fear of something happening. That one day, there will be a call from our aging parents, or from friends with bad news. And there always is the risk when my partner is on a bike ride that there is an accident. Plus, now there also is more of a real risk that one of my check-ups might come with troubled news. “I don’t feel like that, though. I don’t live in the fear of it”, I said. “I feel that my body is healed, that it is “heil” now. Plus, at some point I made the conscious decision to not let cancer take over in that way, to turn into a constant fear.”

My partner somehow wasn’t sure if I just said that, or really meant and felt it, but when I drew the parallel to his biking, he understood: of course he knows that it involves a risk. And it is good to be cautious, and watch out. But you don’t let that take over. Otherwise it takes away the joy of biking, and in a wider sense, the joy of living. It’s also what I was reminded of when I read “Wild” again, when Cheryl Strayed writes about the fear of going into the woods alone: that there are wild animals, small and big, and then there is the risk of having an accident out there, without the option to call help, or of being attacked as a solo woman out there – and she wrote: “I decided to not be afraid.” As otherwise, she explained to herself, she wouldn’t be able to do go on that hike, to go into the woods, to be out there.

And to be out there: I am still glad for yesterday’s walk, that the sun came out for a while and that there wasn’t rain, that we could walk the long loop and see birds, and see the Alb plateau in the distance, and walk back to a more normal atmosphere after the emergency morning.

Back home, I looked through some photo files and then started a new photo-book – I had this in mind since a while, to continue with the painting-books. And yesterday then turned into the day for beginning it. It starts with the sessions of painting the large wall paintings, and then moves to Waldsee. Here’s a moment from it, my first large wall painting, starting in black cray, and then turning colorful, even with a touch of butterfly.

Such good moments. Really, this year, despite all the difficult hours, it also brought so many good things that wouldn't have happened otherwise."


And now, for the final part of the post, and the scare this night brought:

Thing is, one of the diffuse but typcial symptoms of having cancer is night sweat. Didn't know this before my diagnosis, when I woke in the nights sweating every now and then, but later I learned about it.

Now, just to add some irony, some of the common side effects of hormone therapy is: hot flashes. Which is logical, as the hormone therapy induces a change of estrogene levels. So it's a rather large step to take, but it is an option for long-term protection, if you have cancer cells that are repsonsive to estrogene, which was the case in my diagnosis. So if there are any cancer cells that might have travelled through the body and attached themselves to another organ (like lung or liver), and are still there despite chemo, their potential growth is slowed down considerably. Plus, as there probably is  a genetic indication in my case for breast cancer, the occurence of a new case is slowed down, too.

Here is the effect of the hormone therapy with Tamoxifen on the future prognosis:

So: another 5% of chances gained.

The largest gain of chances, though, was to find the lump early - or early enough, before it affected the lymph nodes. For every affected lymph node means an additional risk of +5% - as the cancer cells have started to travel the body then already.

Back to hormone therapy: one of the typical types of medication for this is Tamoxifen, and if you want to get a bit frustrated, you can read about the side effects here in a nicer short version, and here is the more scary long version.

Yep, just reading that could give you the one or other bad dream. But then, in some ways, you get used to those lists with chemo, and also learn that most side-effects aren't going to happen to you.

Plus, my docs will do a check-up every 3 months, to make sure that things are okay, or to detect side-effects early.

The suggested time-span for hormone therapy is 5 years, and recent studies even suggest 10 years. It's probably a 1-2% difference in overall statistics, but this means: 1-2 more survivors for each 100 cases after 5-10 years.

And this is one of the things that is difficult to grasp and deal with when you have cancer: that there is no way of telling. And that this illness is so complex. That there are daily news articles about research, but on the other side, doctors believe since about 50 years that there is a cure "soon". And then, there are all those numbers.

Just to go through all possible options, and to explain statistics: I could also have agreed to the operation, and then ended the treatment. Which had meant that I would have 50% chance that the cancer would have erased completely by the operation. But there also would have been a 50% risk that some cells had remained. And that number is far too high to go for that risk.

It's those statistits that you have to keep that in mind when you run into articles that feature alternative cures for cancer, and "prove" that they work by quoting some cases which probably were those lucky ones that went for the risk, and were on the safe side. To really compare, you need the large studies and cases. And even with all the numbers - and this is a kind of irony - you know so much about your average prognosis, but no one can tell you how your case will turn out.

If cancer would give that option, I'd rather try the alternative way first. And if that doesn't work, go for the tougher treatment regimes. But cancer doesn't offer that choice. Here's a recent news article, which suggests to consider that when you are dealing with cancer, it is a lot about getting quick treatment: Cancer patients are losing valuable time — and risking their lives — with alternative therapies, doctors say.

Yet it makes a lot of sense to see who alternative methods can support you during this time, in combination with the standard therapies. And for sure, the effect of being able to do something is important, too - if it's a bodily level or placebo effect, anything that helps to activate the immune system helps.

Altogether, I think it's important to see the whole picture and understand how cancer develops and how the treatments against it work, even if it's a complex and difficult and sometimes frustrating theme.

And one more link: I came across this dharma talk about living and dying, and while listening I thought: at least cancer gives you that, even when it takes the bad turn: you get a time to reflect on life. It's not like an accident, or tragedies like Paris, when neither you or your family or friends have time to say goodbye, and find some peace before it's over.

So these are basically the thoughts that spin in my mind these days, when I think about how things changed since last year, and how when people ask me "How are you doing?", the question leads to so many answers that I usually only say: "I feel better, and can feel my energy coming back". Looking at how long this post turned makes me also realize how much my world and my everyday life changed, how there are topics in it that are hard to grasp and hard to put into words. And again, how it helps to find the words and reflect on things.

Beyond all that, I am glad that I had so many beautiful years so far in my life, with all those journeys and moments, and that even this year, despite all the difficult hours,  also brought so many unexpected good moments. And that so far, I was lucky with side effects, and can keep writing, and reading. That so many people reached out to support me, to help in so many ways. Starting with my doctors, with all the nurses, with the therapists - from physiotherapist to art therapist. But also family and friends (both online & offline :). And my fellow patients. If I would put all together, it would be like film credits, really. And that I can be here. Now today, and hopefully also in 5 years, and beyond. How nothing is as normal and ordinary than it was before. This time, it is probably altogether the most humbling experience of my life so far.


Here are some more links: 

My mindful November blog: Making November Mindful

The previous post, about the first bad news, and Paris: Paris skies and more troubled news

About my time of going through chemotherapy and radiation: c is for cancer, and for courage, too
(sidenote: not all breast cancer patients need chemo. but for most, radiation is suggested. All other therapies: hormone therapy, antibody-therapy, etc. depends on cancer type and individual risk statistics. More about how cancer works, and how the therapies work, here: getting ready for chemo)

Link to the life expectancy calculator:

The blog title is partly borrowed from long-distance hiker Carrot Quinn, who blogged this morning about coming home from her long-time-hike and trying to catch up:  “Wherein I try and catch you up oneverything”

Friday, November 20, 2015

friday sky rituals

It's Friday - so good that the weekend is upcoming. The week has been rough, what started with the stream of bad news last week (Paris + more troubles news) sadly kept continuing. I hope to get a new blog entry together with an update tomorrow.

But Friday also means: it's sky friday. So I went looking for skies. It's good to have those rituals.

yesterday's morning sky

last week's Friday morning sky

sky with Venus and a second planet, that was on 10th November
wanted to blog more about that and check planets
still glad that i caught that one.


Saturday, November 14, 2015

Paris skies and more troubled news

It's a painfully sad week. The first blow arrived during the week already: a fellow-patient-who-turned-into-a-friend - we met while we had chemo together - received the news that we all are afraid of: that despite all the measures taken, despite operation and chemo and radiation and medication and all, the cancer survived. And its terrible way, its nature of survival is: to move to another, healthy place in the body. Into an organ, or into bones. And then start to grow there again. only that this means a much more difficult scale. There isn´t a cure for that stage so far. There is just the hope that the body will find a way to deal with it for a longer while, with the help of medication. And chemo again.

I visited her in the afternoon when her case was discussed at the tumor conference. In that odd bubble of time when the docs already know about the details of you and your treatment, but you don't know yet. When you are in that place of both hope and fear. "Life will go on," she said. "Whatever they say, the world will keep turning."

We sat outside that day, looking at the photos of her summer birthday party. Talking about life. About the way you never can know.

It was on the way back home that I cried, and was reduced to 2 words: "Please, no". "Please, no". As if there was an arguing possible.

Over 500.000 persons get diagonsed with cancer each year, just in Germany. I am 1 in the statistic of 2015. And about 220.000 die of it each year here. That's 600 tragedies per day.  It's hard to imagine the scale of it. It's hard to deal with even a single case of it.

And then, as if our world wasn't troubled enough, Paris. The place I've been to when I was 18, and then afterwards several times, the last time in 2011. It's just 4 hours by train from here. I remember crossing the bridges, thinking of all the people who have been there, in this city of love and of human ideals.

Liberté, égalité, fraternité -  this slogan of the French revolution that turned into the national motto of France: "liberty, equality, fraternity" and was one of the keys to a change in Europe, to a more social and democratic place.  

Like so many others, we watched the football game yesterday evening, Germany vs France. There was the bomb warning in the early afternoon, but I guess most assumed it wasn't real. And then the game. And the explosions. And the tragic stream of news. At least they didn't make it into the stadium, where 80.000 persons had joined to watch this friendship game.

Even though everyone knows of the ongoing terror risk, it is still unbelievable when it happens. It's such a devastating concept: to go and kill who just happens to be there. Man, woman, child, no matter.

I watched the news, thinking of all those who are out there that Friday night, who found themselves in this mess of confusing and troubling news. And of those who just had some minutes or seconds left to realize what is happening, to say goodbye to their life. Those who won't wake anymore. And those who wake up this morning in the hospital. And all the families and friends that are troubled by this. 

I also thought of the ted talk I watched this week, one of those that are hard to watch, by Melissa Fleming of the UN's refugee agency - about one of the refugee ships that sunk at sea on the way to Europe. Or rather: that was drowned by the crew, while 500 people were on board, far from shore. And how some miraculously survived, one of them a young woman who also helped 2 children handed over by strangers to stay afloat. The tragedy, it was news for a day, and then vanished. Like the refugess on board. At least there is this memory now: The story of two survivors.  

This world. So beautiful and full of magic and heart sometimes, with people going out of their way to help strangers. And so cruel sometimes.

And then, here, Saturday morning. I make tea and hear an ambulance. And forget about it already as I walk into the living room. 10 minutes later, the phone rings. It's 8 o'clock. Either a telephone marketer call, or a wrong number. Or bad news. I pick it up. And it's the bad news: the mother of my partner, saying that the ambulance is there, and that her partner has pain in one side of his body, that they are driving to the hospital now.

My partner is there now, too, to be there with her while they wait in that bubble of hope and fear. At least the first news is good: it turns out he had pains in the side since some days, and the doctors think it doesn't look like a stroke.

Will go and light a candle now. For peace. And another one, for a cure for cancer.

I want to light 100 candles.

At least there is this bit of good news: it wasn't a heart attacke, and wasn't a stroke. the docs aren't sure yet what caused the pain, but it's not life threatening. they are glad, though, that he called an ambulance to be on the safer side.

My partner is back now, and we will go for a walk. And hope it's a quiet day from now on.


more skies: sky friday

Friday, November 13, 2015

links that touched me: Music, Angkor, Cancer, Nurse Blogs, Asteroids & Art

When I come across an interesting link / video / story that touches me, I often copy the link to blog about it at a later point. Yet by then, there's already another interesting link that is waiting... to keep the links from vanishing unblogged, I started this "links-that-touched-me" series.
Here's the next part:

Tuesday, November 10, 2015

Minimalism island

The new photofriday theme is Minimalism...

which made me think: if Minimalism was a place, it would probably be Lanzarote. Especially the area of Timanfaya Nationalpark, which has a touch of landscape art:

There, every single green plant is a small spectacle:

More moments from Lanzarote in this blog

More minimalism: photo friday

Monday, November 9, 2015

Making November Mindful

The days are finally starting to feel normal again. So nice. And while catching up once more last week, I came across a lovely-sounding web initiative, the Mindfulness Summit, which happened to be in October – so I missed that.

But it sparked an idea: I want to make November my personal month of mindfulness, and post a mindful post, image, painting or link each day, over in my neglected photo blog.

The first posts are online. For the start, I created a mandala, which now also turned into the icon for this month. Also included are: videos, photos, notes, a mindful app and more. It's all online here:

Once upon each day: Making November Mindful

Nov 1: Mindful November Mandala
Nov 2: This mood of autumn: yellow leaves falling (+ yoga video)
Nov 3: to feel calm
Nov 4: Handmade chain reaction (or: cookies)
Nov 5: Perspectives on Mindfulness (research summit link)
Nov 6: the same place / a different place
Nov 7: Spaces + Borders (art therapy moment)
Nov 8: Insight Timer (meditation app)
Nov 9: Ornate Mandala
Nov 10: life is..
Nov 11: chalk leaf patterns
Nov 12: moon strings (blog memory)
Nov 14: a troubled world (Etty Hillesum)
Nov 19: do more of what makes you happy (flow magazine)
Nov 20: sky friday rituals (sky friday)
Nov 21: nothing & the ocean (ocean quotes)
Nov 22: life is made of moments (Instagram)


I also want to put a reflection together on the time since the cure - or rather: a longer post on the whole year of going through the breast cancer diagnosis and the time of chemo and radiation. But so far, I didn't find the right mood for it. Right now, the mindful month feels like the way to go, to play and explore and enjoy.

Parallel to that, I started to sort through things in a sort of November-spring-cleaning. Or rather: returning-from-the-shadowland-cleaning.

Step by step...

Friday, November 6, 2015

3 november moments: walk, sky, sunset

November is a festival of colors right now. So good. 
It feels like the colors of the leaves are stronger this year -
maybe due to the rather warm and dry summer?

Or is it my mindfulness practice, or the effect of having been away 
for 10 days, and thus seeing the change not gradually,
but in contrast to a landscape that was mostly green?

Probably a combination of all of it.
Here are 2 more photos: 

Walking along a scenic country path, watching sky patterns:

And a sunset moment: 

more skies from around the world:

Friday, October 30, 2015

october light, returning, and catching up once more

The final days of October, here they start foggy and everything looks grey. It takes a while, but at some point the fog dissolves - and suddenly everything is aglow in light and color. Like in a natural color festival of yellow and orange and red.

When the sun came out, I went for a walk, and then just stood there for a while, watching the yellow leaves whirl down from the tree, one after the other. It made me think that the very same place can be full of clarity, or full of haziness, That the difference sometimes is just an hour in time. And patience.


Still catching up, but it feels that things are now starting to be smoother. All the bags are unpacked now. And I returned to a collaborative art project, with the image and note above, following the theme "clarity". It was good, to make that step. Today I looked for the pumpkin candlelight to put outside for Halloween. On Wednesday I visited the library - it's a time of returning.

This weekend, I want to put a longer blog post together, with a reflection on the last year - it's one year now since my diagnosis. It feels now would be good moment to look both back and forward.


And some links: during the island stay I didn't browse much. But since yesterday, I keep running into links that I want to return to this weekend. So I thought, I might just include them here:
  • The Mindfulness Summit (which happened in October and was free then, so I missed almost all of that, but what a mindful project) 

It was this link that then brought the idea to turn November into my own Mindful month, and post a mindful post, image, painting or link each day in my photo blog Once Upon Each Day. The first posts are up already, and they include (surprise)... a video of leaves falling, which together with the photo above is my contribution to photo friday's current theme "Signs of Autumn":

And now, back to the original blog post and the list of links:
Also, Coursera has a new course that look interesting: Introduction to Genomic Technologies
And this one is still on, I guess I will have a look: "Sleep" - "The objective of this course is to give students the most up-to-the-date information on the biological, personal, and societal relevance of sleep." (There was an info session at the cure stay about sleep, and some of the insights were so valuable. Like: waking up at night doesn't mean that you don't sleep well)