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

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”

1 comment:

Linda said...

Bless you! Alternative care can be a great help, and much of it has been around for many years. It sounds like you are doing plenty of things to strengthen your spirit so keep up the good work.