Thursday, February 25, 2016

timelines, a 4-line-version of me, a different sky + my new normal

Timelines and gaps
Time is a curious thing. I just scrolled down in my blog, to see when I put the previous update-on-things-post together - start of January? Middle of December? I had thought about writing it time and again: a post about how life feels now after the long time of treatment, about the way the recovering is still going on - but kept postponing it until now.

I did some sorting in the blog in January, though, and put an overview-page together with all entries: c is for... cancer. The last entry listed there at the bottom, is from November 22: The news around the corner, 5 years, and my personal mortality curve, or: Wherein I try and catch you up on everything.

That was 3 months ago. It's the longest pause in my "c-notes". It somehow fits, though: I also paused with the art sessions at the onkology centre during this time. The last session I joined was in December. Last week, I was there again (the photo above is a detail from the painting I worked on). And now I am blogging about the theme again. It's probably not just coincidence, this pause in the words and images.

The 4-line version
So, how am I? The short version is: fine. Altogether, things are still slower with me, but I am finally getting back to some sort of normality. I still need more sleep, and when there is a lot going on during one day, I need some rest on the next day to balance that. But my energy is returning, step by step (or rather: 2 steps forward, one back - I am still learning what works well now, and what doesn't work so well, more about that later in this post).

Plus, the whole thing at least has also one good side effect: you enjoy everything double afterwards.
Well, almost everything. There is a part that is important, but hard to enjoy. Because, of course..

...the end of treatment... isn't the end of treatment
So this is what happens: after the initial diagnosis of cancer, you go through the main treatments. Depending on your tumor/grading etc., that is a combination of operation / chemo therapy / radiation. And while in that timespan, I still thought: once that is complete, life step by step will move back to normal, to the way it was before. I guess it's a bit of a trick the mind uses to get through rough times, to think: all will be well, all will be like before. That's probably also an effect of the length and stress of the treatment regime: it's difficult enough to deal with the immensity of all. So in each phase, I focused simply on the next step.

Of course, I knew that there is some schedule for the check-ups that follow afterwards, but it was only after the radiation ended, and I was recovering from that, that my focus moved towards that. So the basic schedule is: 3-monthly ultrasound check-ups, combined with a mammography each half year. Which sounds not too troubling, after a time of weekly chemo, and of daily radiation, to have a check-up each season. But the checkup-program will continue for 5 years. So: after each check-up, you already have the next date. And, in my case, I get a long-time-medication, which also goes on for 5 years.

The first check-up for me was in December. It included the mammography, a bloodcheck and an ultrasound of organs, "to see if all is okay.” Which is the more casual and nicer version of saying: To check for mets. Yep. You go there, and look at the screen with your doc, and hope nothing shows, because mets mean that your prognosis just took a nosedive, and you are in real trouble.

So each check-up opens the box of the whole theme again, both in your mind, and physically, too, as it brings you right back to the initial checks when your lump was found: the last time I was at the mammography lab, it was a place of dark news, and it lead to the hospital. "You probably will be nervous in the days before the check-up, and then things relax again," my doc explained. "I will be okay," I answered, in a mix of hope and positive autosuggestion.

The feeling during the check-ups, it's like walking to the edge of a cliff. And then you stand there for a bit, until you can breathe again, and the ground underneath your feet is forming into the normal ground again, and things go on.

The thing is, for me it's not directly in the bright daylight that the nervousness is present, that my mind starts walking. At that point, it is more the feeling of surreality, walking out of the doc's door, and then just walking on, into the bakery, to order pumpkin rolls. This contrast of what-might-have-been, and the usual normal everyday life. Combined with relief.

I am glad the last check-up was in December, so the new year started with a free space of no-doc-appointments-for-now (which probably also lead to the post-free space).

A different sky
Another thing that waited in the new year, to celebrate, after this year of troubles, was a different sky:

My partner had holiday-days left from 2015 as he saved them, in case that when things would turn really troubled, he could take time off then. Plus, we couldn’t really go anywhere anyway, we were glad to at least squeeze in some short trips between the major treatments phases, and a long week in October together.

So now he either had to take those saved days or the company would have paid them out. He was worn out from the year, too, and the way he felt helpless while I went through cancer therapy. In some ways, he probably worried more about me than I did myself: while I kept my focus on the next step - today, tomorrow, next week - and was sticking to "all will be well", the larger context and risks where more present toh him from start.

And so we said: of course we take the holiday time. And it was really good, to start the year on this different note, and have time in the sun, in Lanzarote, under a different sky..  

While in Lanzarote, I thought I would put a longer health post together - but the time there was more about reflecting and enjoying in the rhythm with the island days. I wrote a longer mail to a friend, though, about a frustrating realization - nothing dramatic, just some pains in my hands. But they formed a bump in my hope that I would be all-pain-free soon, and lead to a different view.

That winding way
The mail - reading through it now, it also makes me think that the fuzzing about the side-effects might be an indirect way of dealing with the whole situation, without adressing the main fears directly (that whatifitcomesback-fear).

So here's the mail, together with a photo, as one of the questions I most often get asked is: how does your hair look now?  -  My hair is curlier than before, and mostly growing back in its own color. To my surprise, I really like the short hair, the way it feels, and how it doesn't like to be tamed.

Friday, 5th February, Lanzarote island
Being here, it is just the right place to be. The warmth of the sun and the open time are so precious. It is a time-and-sky-luxury, to have those island days, and the space they bring to enjoy and relax and reflect.

A thought I had time and again when walking along the ocean: I came a long way. And: I am still recovering. Right now, there is a frustrating health issue I am dealing with:  "Tenosynovitis" - the inflammation of the fluid-filled sheath that surrounds a tendon. Symptoms of tenosynovitis include pain, swelling and difficulty moving the particular joint where the inflammation occurs. When the condition causes the finger to "stick" in a flexed position, this is called "stenosing" tenosynovitis, commonly known as "trigger finger". This condition often presents with comorbid tendinitis."

I don't have the full symptoms, and first I couldn't place what it is and where it is coming from. In one of those dominos-of-side-effects, I started to do muscle training for my shoulders, to actively help to release the tension they still hold, and since then, the symptoms in the hands are getting worse. I thought it was still a chemo side-effect, as chemo can affect joints, and hoped it would fade. I also felt it in yoga, in down-dog, that my hands start to hurt after a while. The situation left me wondering, though, as from training, this wasn't more or different compared to the cure-stay in Waldsee, and back then, the hands were no problem, but the knees. .

It was here, after a session of yoga, that I had the brainwave to google the possible side-effects of the long-term medication that I get (Tamoxifen), and that at first seemed to have no side-effects for me. But there it is: it can make tendons more sensitive.

Understanding that it's a medication side-effect was frustrating of course, especially as I will have to take Tamoxifen for a long time, for years. But then, understanding it helps to be able to deal with it.
So the sum of it is: I have to be more careful with my hands and joints. And since I do that, it really is getting better.
"Try to see it from that angle," my partner pointed out, "so far, your body found ways to deal with other side effects, too, and found work-arounds"

And it is true. Like with my knees or my neuropathy, both are chemo effects that almost all in our group had to deal with: numbness of fingers and toes, and joint pains. Luckily the numbness is fading now, and for me the effect altogether were (relatively) minor. Where it showed most was the initial pain after waking, with fingers that were stiff and hurting. And I couldn't sit with crossed legs until December, but now that works just fine again. I think it's a mix of healing, and that also my body rebalanced the effect. A key to that (withouth being fully aware of it) probably is the walking and the crosstrainer. From start, I felt the impulse to stay active, and new studies also have that as a main suggestion: to keep active during this time, so that the body is motivated to keep the whole muscle-joint-digestion-bloodpressure system up and working.

So I am now more mindful with the things I do. Another realization that I arrived at while on the island: I probably won't be able to start jogging again, as it would be too much strain for the joints. So it rather will be walking when outside, and the cross-trainer for inside. But I can start swimming again, and loved to be in the water while in Lanzarote.

The picture I found for myself is: a winding road. Of course it would be nice to have a linear development towards feeling-better each day, but the body is complex, and it's more like 2 steps forward, 1 back. Yet looking back, like I wrote above, I came a long way.

And the main realization of the last weeks was: my way, it is still ongoing. and it won't lead back to where I was. But to... .

...a new normal

There's a quote that moved me, from a longread that I came across by chance, and that hasn't "cancer" in the introduction note, but first looks like a dating story. In it, the "date" writes back after a first meeting, with some extra notes about himself his situation in 3 lines:
"I’m a cancer and cancer treatment survivor. I’m doing really well right now, but I do have regular blood tests and live with more trepidation than the next person. I have become a health food fanatic  and given up my love for single malt scotch." (from "My Last JDate" by Esther Schor)
To live with more trepidation, that sums a lot of it up, I think. Also, this turn to health food, or in a wider sense, to more mindfulness and care when it comes to one's body and one's emotions.

The nice thing was that I still had two dates with my physiotherapist scheduled after the island time, and was glad to discuss things with her directly. Turns out, she is doing a course in "Sensomotorics" - a slow body awareness training that is related to Feldenkrais. So I am now joining that course. It's also good to do something new, I realized, something that comes as fresh experience, and doesn't bring a direct comparison on a physical level to "how it was before", like trying do yoga postures like the classic greeting of the sun would do.

How to look at it 
Altogether, I try to be aware of my attitude and try to focus on the things that are good, that are working without problems, that bring joy. So maybe that is the other reason for the long pause in writing about my illness / healing: to have an open space for other themes for a while. To start the year with Joyful January, and to start to blog about books again. To bring newness into the blogs, too - the new template for my photoblog Once Upon Each Day, which is all about photos now, and each day makes me go and either take photos or revisit files.

In a nice wink, I opened a Chinese fortune cookie last week, and it said: "Don't lose your esteem for small things."

Another new thing is the revisiting of my own writing here in this blog, something I wanted to do since a while. Now I found a simple and playful approach: to pick each photofridy theme and go and look for a story that fits, too. I started a label for it: revisiting stories. The current one is more than a revisit, though - it's a flash story called "White". Reading through it was more than interesting, especially as it includes a line about starting to paint:
"On the way home, I buy a box of water colors. I make sure that all six colors are included, blue yellow red, green orange violet. I paint them on a boxless page, one after the other."
When I wrote this, I had no idea of how things would turn for me, and that I would actually go and buy colors and paint, but not for a reason I ever expected.

In that new context of my life, the original slightly frustrated ending of the story is didn't work for me anymore. So I changed it. (the original is still up in fictionaut, unchanged: White).

I like the new version better. It also made me think of the quote on paintings, that they are never finished - they just stop in interesting places.
Just like life.


More + Links

An overview of all blog posts about my time of going through cancer-treatments is online here:
c is for cancer, and for courage, too

On the theme of health: Coursera has a short course on, about Cancer. I started to watch it, and it is really interesting and comprehensive, they put it together in one hospital, with lessons from the different physicians and scientists there. Here’s the link: Introduction to the Science of Cancer

They also have another interesting course on: "Memory and Movies: Explaining the Psychology of Memory Through Films".

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