Friday, July 3, 2015
July starts with a heat wave here in Germany. "Extreme temperatures," warns the weather forecast. Tropical nights. Blazing sunny skies. The best time to enjoy the weather is in the evening, when you can sit outside until midnight, and watch the moon and the skies in a warm breeze, something that is unusual for these regions.
The heat reminded me of this short flash story I wrote in another summer, with the same heat, while it was world soccer cup in South Africa:
It was the summer of vuvuzelas. The ball rolled on and on, down there in the South of Africa, between all those countries of the world. Huge screens glowed in the night, green reflections of success and failure.
Then suddenly, it was over. The TV channels returned to their normal daily and weekly schedules. The heat kept lingering, though. It turned lawns into patches of prairie: yellow and stubby the grass stood, as if waiting for antelopes and hyenas. Still hesitant, you went, and bought one of the last vuvuzelas on sale, and we finally learned to do the rain dance.
More skies from around the world: skywatch friday
Sunday, June 28, 2015
"Soft" is the new photo challenge. My first thought was: icecream and dandelion fluff. And then I remembered another soft moment, the largest soft sculpture I've ever seen, too large to fit into a single photo. This was at Tate London, while the "Cruel and Tender" exhibition was on:
and another moment from that day: the light reflected in the Thames river:
More soft moments from around the world at photofriday
and another moment from that day: the light reflected in the Thames river:
More soft moments from around the world at photofriday
Friday, June 26, 2015
this afternoon, i almost got into the car to drive back home, then i saw this walkway and followed it for a bit - and just 2 minutes later, the city felt far away, and all i saw when looking up was trees and sky.
i also tried a video, to capture some of the birdsongs:
more skies from everywhere:
Wednesday, June 24, 2015
This is where I am right now:
- 4 weeks ago, I had my last chemotherapy session
- 2 weeks ago, my chemo port was removed in an ambulant operation
- 9 days ago, my radiation therapy started
- altogether, it's about 250 days of treatment so far
And here's a reflection on all that, first the rational part, and then the emotional part (basically, the thoughts and emotions I am going through every other day in some way or another, to get a grasp of all those invisible things).
From a rational point of view...
...the finishing line is finally starting to come closer: at the end of July, the treatments are complete. Well, at least the direct treatments. There still will be medication afterwards. That's the way you deal with cancer: you use all the options you have, one after another, to keep it from returning. Because the troubling fact is: even when you are lucky and have a nice, well-defined tumor that can be completely removed, there is still a 50% chance that there are single tumor cells that have spread already.
Up until the 80s, the standard treatment for women diagnosed with breast cancer was a mastectomy (removal of the entire breast), in the hope to "catch it all". Only that cancer can't be wiped out that easily. So even after a mastectomy, there is the ongoing risk that it will return, or rather: that some single cancer cells remain somewhere and start to grow again, because that is what they can best.
One of the risk-areas for breast tumors is the lung. Hadn't know that, even when they did the standard x-ray after the initial breast cancer diagnosis. The full scale of what it meant that my x-ray doc said "your lung looks good" - that's something I only realized later, when I started to understand more about cancer cells, and the therapy.
(my daily radiation date leads to this place: the radiation centre is in the basement of the hospital.)
So that's what chemotherapy does: it catches those potential cancer cells that spread to another, unknown point of you body. It's also the reason why it is given as infusion: to circle the entire system.
In contrast to that, radiation is focused right on the nearby tissue, but with the same plan: to catch potential cancer cells that might have spread from the initial tumor. And like chemo, it also damages the healthy cells of your body, but it damages the cancer cells more severly, as your healthy cells have the ability to recover.
Here's the matter-of-fact explanation of it:
"Radiation therapy is commonly applied to the cancerous tumor because of its ability to control cell growth. Ionizing radiation works by damaging the DNA of cancerous tissue leading to cellular death. .. Radiation therapy is in itself painless. Most side effects are predictable and expected, side effects are usually limited to the area of the patient's body that is under treatment. The main side effects reported are fatigue and skin irritation, like a mild to moderate sun burn. The fatigue often sets in during the middle of a course of treatment and can last for weeks after treatment ends. The irritated skin will heal, but may not be as elastic as it was before."Altogether, radiation is easier than chemotherapy, and much shorter, too. It's daily, though, and it will probably be like developing a sun-burn, and then still going into the sun on a daily basis, and watch the effects while counting down sessions.
On the other hand, it's "just" skin in a defined area. And after the treatment, the skin will heal again, and the burn will fade.
Side effects for me will probably start this or next week - yesterday, the nurses asked for the first time how I am. They probably already noticed something before I did, as in the evening, for the first time, the skin looked a bit reddened, yet that faded during the night.
And I notice that I need a bit more sleep. But otherwise, I feel okay, and am still able to recover from chemo.
I looked for a video that gives an idea of the treatment, here's one. The radiation machine is called "LINAC" (linear accelerator), and the one they have in hospital is almost identical to the one in the video.
The emotional side of it
That was the rational side. The difficulty is that most of all those things are not visible, and beyond our ability to notice and feel them. Both chemotherapy and radiation happen on a cellular level - all you direclty feel are the side-effects. So from impression, it's the treatments that make you sick - the cancer itself didn't feel like it caused any harm, it was just there, a little lump of tissue. It's like a dark thing underneath the skin that was there, lingering, and after the operation it was gone - but the ghost of it is still hovering, and with it all the havoc it can cause.
It's such a strange abstract illness. And at the same time, it's not something that comes from the outside, like a virus or bacteria, but it is own body cells that turn disfunctional, without direct cause. And of course, this makes you wonder how it happened. Why me? When was the turning point for those cells?
Going through all those treatments also continually takes me into this parallel world, where most people are either ill, or are doctors and nurses. Where meeting people who happen to be beyond cure is happening on a weekly basis. All who are there are dealing with health obstacles, either with their own, or with those of the ones they try to cure. And yet, this world isn't all sad or painful. There is laughter and silliness, and boredom and eagerness, and together with the pain, there is hope.
In some ways, it is like being on a long journey, meeting others who are on their own journey, and sharing the experiences. It's not lost time, not at all. It's probably one of the most intense times in my life, and - in some ways - one of the most important, as it puts everything in a larger perspective, and shifts the focus to the major life questions.
This weekend I visited the "Buddha" park again, and it was good to be there, in this place of quiet peacefulness. And we went to a birthday party on Saturday evening - it was the first real party I went to since ages. It was good, to be there, being part of the "normal" world again, with others. Especially as radiation is a rather lonely treatment, compared to chemo: all my chemo sessions were group sessions, a time of meeting and talking with the others, and of going through it together. While with radiation, you are mostly alone, you go there, wait for some minutes, are called, get prepared, and during radiation everyone else leaves the room - so you are alone with that machine. Which gives all a strange film-like feeling. Altogether, it takes about 20-30 minutes from arriving at the radiation centre to leaving. Here's the note I wrote after one of the first sessions:
"That sci-fi-like moment when you are spotted by green light pointers in a radiation-tube-machine-thingie, and the doc and nurse leaves the room, and you look up to a sky of stars and then the machine starts to move with a low hum and the lights turn to green for "Action".
The suggestion from the radiation team is to rest after the radiation, and take things easy. Which brought back the idea I once had: to put up a hammock in our garden. Only that there are no trees... but that problem now got solved, I looked for hammocks that has a frame - and it works really well. So this is me after radiation:
Previous blog posts:
- Here is the link to the previous blog posts: "Deported", chemo dreams, and a life lesson in a bubble"
- And the one before, from the last chemo: "Final chemo, snapshot of me, and a flashback forward look"
Tuesday, June 23, 2015
Saturday, June 20, 2015
Reading this week: reads to drive along to. Since this week, I have to drive about 1 to 1,5 hours on a route that often comes with traffic jams, and the destination isn't that great either: to the hospital and back, each day of the week, for 7 weeks. To make that drive less frustrating, I now revived my old e-book reader. Which comes with a really nice feature: it has an audio setting. So it can read stories and books to me while I drive. Works pretty well, and makes the drive easier. To add some spin to that, the idea is to read stories and books from different countries.
Here are the books and stories I read this week, and the places they took me to:
LAOS, VIETNAM, AUSTRALIA...
"Scared to Life: A Memoir Paperback" by Jillian Webster
This is a beautiful and reflective memoir of a long world trip, a trip that leads from Europe to Asia, and to Australia. What I enjoy is the mix of places, some I know and been to myself: Ireland, France, Switzerland, Italy...and also the South-Asian loop: Thailand, Laos, Vietnam, Cambodia, Thailand. Reading those chapters brings back my own memories of travelling in South Asia, while the chapter about Australia takes me to a continent I've never been to myself.
Beyond the places, the book includes the time before and after the journey, which gives the book a larger horizon. Here's the summary: "After years of heartache, she walks away from the Jehovah's Witnesses, losing her family forever. Forging ahead with nothing but her backpack, Jillian sets out on a global journey across Europe, Africa, Southeast Asia and Australia in search of the life she risked all for."
Jillian Webster also has a website about her travels and the book: scaredtolife.net
PACIFIC CREST TRAIL
"Thru-Hiking Will Break Your Heart"
Another book I came across while browsing and searching for good "driving" reads is about a long-distance hike. Carrot Quinn is a long distance hiker, and like Cheryl Strayed with her memoir “Wild”, she wrote a book about her trail experience – and now is blogging from another trail. I started to read her current blog entries, and now bought the memoir "Thru-Hiking Will Break Your Heart", which starts near the border of Mexico and leads to Canada.
Just reading about being out there and reaching out to the horizon brings a freshness to the day. Plus, I hadn't thought about it when ordering, but some unexpected parallels between those long hikes, and long times of treatment come to mind: that you need to keep going, and get up each morning. That it's not comfortable, but that you do it anyway. That no one can take that walk for you, but that there is a solidarity growing between you and all other who are on that walk. And that there is, somewhere in the distance, the point that waits to be reached.
If you want to read a bit of the hike, Carrot Quinn's website is "Dispatches from the wild". She also blogs there from her current hike.
Next to the books, I read some short stories - and just looking for interenational short stories was interesting.
When looking for a story from Armenia, I arrived at a new online magazine: The Amenite, which is "an online media outlet of Armenian news, culture, politics, society, and history, with showcases of art and literature,"
Here are two links from it, the first is an essay on language and storytelling, and the second is a short story that reaches from Syria to Armenia and the US:
- Learning Armenian: The Art of Telling an Armenian Story by Kharmun Khoo
- “Saved From What?" by Elizabeth Mkhitarian
The same happened when I looked for stories from Morocco: I arrived at an online magazine of Moroccan writing. “al-hakawati Arab Cultural Trust is an independent non-profit educational organization. Management and staff are located in Beirut, Lebanon, and New Jersey, USA. al-hakawati is the Arabic word for “the storyteller”. They feature an online anthology of Moroccan stories called "The Moroccan Dream". The first dream is a dream about writing and stortelling: The Interpretation of Dreams
Global Reading Challenge 2015 + Currently Reading:
For 2015, I try to read books / authors from different countries, the idea is to visit all continents. Here's more about that plan: 7 Continents, 7 Billion People, 7 Books.
In a previous book post, I put together some reading statistics and book memories of 2014 - so if you are into geeky reading statistics, try this link: A year in reading in geek statistics + book memories
Friday, June 19, 2015
Solstice is upcoming - the day that is the longest day of the year, or rather: the day of longest light-time, before the days start to "shrink" again.
The photo is from the archive, will try to catch on Sunday, though (and hopefully it will be a sunny day)
And to go with solstice, a multi-lingual sun story I wrote some summers ago:
Early morning. The swimming pool is still asleep, its surface a reflection of the sky above: clouds moving in water, tainting it in sunrise colours, orange, yellow and pink.
Like a water colour painting, she thinks, like a water colour painting that leaves no traces, that appears and vanishes again, soft like a dream. She considers to change, to leave the scene for some moments, slip into her bathing suit, head to the pool and slide into the water, to become a part of it, to feel the sun on her face, the water on her skin.
But she doesn’t want to disturb the picture, doesn’t want to disturb the quiet of the morning. And she doesn’t want to miss the moment the sun comes up, she couldn’t be far.
The sun. El sol. Strange, she thinks, how in Spain the sun is male, and the moon female: la luna. For her, it was the other way round, always has been. The sun she, the moon he. The ocean neutral, just like the sky.
more skies from everywhere: skywatch friday
Saturday, June 13, 2015
"Breathing in I calm my body. Breathing out I smile." - These are the lines that I noted down on a colorful piece of paper earlier this month, to keep in mind again. I am smiling quite a bit these days, though: two weeks ago, it was my last chemo session. But the thing with chemo is, it takes a while until the body processed it all, and until side-effects start to fade. There is good news, though: my bloodcount is now rising again towards its former level. Which feels like reaching both a milestone and a turning point.
Below is a (geeky) spreadsheet. The first column is my leukocyte count before chemo: around 8000. Leukocytes are the white blood cells, they are part of the immune system. Their number should be around 4.400 to 11.000. Chemo affects them, and that's why chemo patients are more vulnerable to infections. During the first phase of chemo, my leukocytes were down to around 2000, and I needed some extra meds to kick it up every now and then. (And yes, each column is a bloodcheck, and each came with that bit of worry of how the count will turn out, especially in the first half)
In the second phase of chemo, my leukocytes were stable at around 4000. Now they are starting to rise... and are at 6300. So I am back in the normal range, and hopefully next week they will return to my pre-chemo-level.
It's really a good thing for chemo infusions, as it makes them safer and helps to spread medication. And just in case something goes wrong during treatment, they can directly give other meds, or infusions etc. But it also is just about as comfortable as it looks, at least in my case.
So this week, I had the counterpart ambulant operation to the one in December, when it was inserted. They cut up the scar again, and removed the port. And then asked "Do you want to keep it, or not?" - Curious as I am about all things related to the treatment, and after carrying it underneath my skin for all these months, I surely wanted to keep it and see it. This is how it looks (they cleaned it for me and put it in a neat litte box), and I held it in my hand to take the photo to give an idea of size and proportion. So I am officially "deported" now.
About the port: the lower platform is the part where it gets fixed inside the body at 4 points. The upper part is made out of silicone rubber, that's where you can insert injection needles, and like skin, the the rubber closes again after the injection. (If you are curious, there is more about ports: basics and details.)
While going through chemotherapy, my sleep was different - I hardly remembered any dreams, often it felt like I didn't really dream much. Medical-sleep, it kind of was. Now that chemo is over, the dreams return. This morning I woke early with the memory of a lovely dream: I was in a festive place, some kind of event in a lush surrounding, with this sensual vibe in the air. There were colorful cocktails, and I was there, feeling good, feeling the breeze in my long hair.
In the dream, I didn't even know that it could be otherwise.
I fell asleep again, and then had the counterpart dream: I was in a medical centre, the docs and nurses had to do some extra tests, and one of the test came out with a troubling result. Right there, they started to prepare an infusion and gave me a first set of medication. Then they explained: "We are sorry, you have to get 8 more chemo sessions. And we can't help it, this time, all you will be able to eat is mashed potatoes."
When I woke, both dream memories were present like films. I guess it doesn't take a therapist to figure out which hopes and fears, joys and sorrows these two dreams are about.
(from my first visit of the radiation centre)
A therapy session with a life lessonBut actually, I had a therapy session last week, an important one that helped me to see things clearer, and it happened at just the right time, too. The thing was, my final chemo was on a Friday, and the following week started with a preparation appointment at the radiation therapy centre, right on Monday morning. On the one hand it was good to get an idea how treatments will continue. But on the other hand, I felt like entangled in treatment dates, without real pause.
So good that just the next day brought a therapy session for me, and through some luck it turned out that I was the only one there, so I had a solo-session with the art therapist, which turned out very insightful. I was a bit early, and she had started to prepare the room, but wasn’t in it – so I finished the preparing, and then started with a first sketch, drawing the answer to the question “how are you?”
It’s somehow a mixed state, chemo finished but the side effects still there, the worry about when they will leave and if they will leave completely, the slight pain in the fingertips and nails... and then the radiation upcoming, and the port removal. I drew a sketch with marker, with the therapy centres as houses/places I have to go through, and the thoughts and worries as bubbles.
Then my art therapist arrived, and we talked – and in the talk, she guided me to another view: that right now I am in between those theraphies. “And what would you need now, what would help your body and your mood?” – the answer was easy: a pause. Healing. Light. Joy. and the thing is, that’s what i had time for at this point: a pause.
She pointed out that I have already included a space between the therapies in the sketch, and suggested to work with that, to open that space and insert the elements that would nourish me now. That’s how the second painting evolved:
The 2 paintings, and their symbolism, they also carry this general truth: that it is up to us whether we fill the space we have with worry, or whether we reach out to the things that help to ease the worries, to nourish us, to arrive at joy and peace, and open space. I think this is true for so many things in life, for all those other times of potential obstacles waiting. It felt like a life lesson, to work through this and put it in the images.
Upcoming now is radiation with daily sessions. The doc told me that generally, side-effects won't show much in the first 2-3 weeks, so hopefully I can still recover some more first.
And looking at the calendar, it is 2 weeks now since the last chemo, which was on Friday, 29th May. From start, my chemo was always on a Friday, so it's probably no surprise that it influenced my dreams on a friday night. (here's the blog post from the last chemo: "Final chemo, snapshot of me, and a flashback forward look". And here's more about my art therapy sessions, they turned into one of the really good side-effects of this time).