Saturday, December 20, 2014

from last island day to first chemo day

2 weeks ago, it was the last of the island days. the photo above is from the morning of the flight, with the sky turning overcast.

1 week ago, it was the day after getting my "Port", this medical appliance that will make infusions easier during chemotherapy. The port, it isn’t really painful, and it will be more comfortable (or rather: less upsetting) than receiving infusions through the usual injection devices they put on the back of your hand. Also, it is safer, as the risk of a wrong injection that spills into body tissue is less likely)

And today - is the day after the first chemotherapy session. Here's a photo from the chemo room, the application is for running the different medical infusions, some of them run parallel. Such a different scenery.

"You are so brave," a friend worte. "I don’t think I am really brave", I wrote back "it’s just that there isn’t much of an alternative. The recurrence risk of the cancer I have, and that I would live with when I wouldn’t do the treatment is rather high. And on the other hand, the chances with treatment are high for me, as it is localized and detected early. I just looked for a chart, here is the sum of it:

In German, the number they give for that is 95%, but it’s really good. I just wish they wouldn’t name the charts “survival rate”. But then, that’s what it comes down to. If you detect it later, and it isn’t localized any more, chances start to fall. So to sum it up: it’s not really a question of being brave, but of doing what you need to do to get into this safety zone… 

So: chemo day. I was a bit nervous, not really knowing what will happen, and how my body will react to it. On the other side, I was curious for it after the waiting, as it also will give a better idea of the time coming. Altogether, it turned into a mixed day. the chemotherapy session itself went well: we were 6 patients in a friendly room, all of us in breast cancer treatment. The nurse had already prepared things for everyone, and we sat in comfortable chairs that are like tv-chairs, with a rest for the feet that is moveable, and a moveable back, and a cushion.

The treatment for me was 5 different infusions, one was fluid that ran all the time to water the body. the first real infusion is a medication mix for the side effects, and the other were the real chemo stuff, and other additions. The infusions, they worked well with the port. And sitting there together gave a good space to chat and connect, and share experiences. I was the only “first”, the others were further in treatment. I had brought my e-reader, like some of the others, too.

The whole procedure took about 3,5 hours, starting at 8.30. Here's a photo of the infusion list, that's the medical roll I am on. The 2 lines marked red are the actual chemotherapy, the others are accompanying medications for side-effects (more about that further below.)


My partner picked me up after afterwards, and my sister was arriving, too, shortly after we were back. She had brought fresh bredrolls. I felt good, and had appetite to eat, so we had lunch together, which was really nice, this togetherness after the first treatment. After lunch, we went for a walk. It was good to be outside, in the fresh air, and it's nice that it isn't really cold yet. 

Back home, I had a cup of tea,  then my sister left, and I thought I would watch a bit of tv and relax – and about half an hour later, I felt that my body starts to react, feeling a light dizziness. That was still okay, and I dozed for a while. And woke up feeling my with nausea and a tight stomach. I went into bed, and waited to see what would happen, and dozed on and off, and then finally slept for 1,5 hours. Afterwards I felt better and was up again, and had a banana-honey bread and tea.

Today is better, with a slight dizziness, but otherwise I feel okay. We went for a walk, and my appetite is back, too. I also did some yoga, which helps to get back into balance and relax. I am glad I looked for an online yoga channel in summer during the pause of my local yoga course, and now can choose from single sessions with different themes (here's the link: Yoga online). One of their current courses is a Healing Course, and there a short meditations, too, which work really well for me right now.

Next week, there will be an after-chemo-blood test, and then another one in the following week. The next session will be in 3 weeks, so that's okay, giving time to rest and recover before the cycle starts again.

I now started to mark all blog posts about this shadow journey with a tag, you can click here to read them: C is for cancer, and for courage, too 

And here are more more moments from Lanzarote island 


Infusion list / Medication
And here is more about the medication - I got curious for that today, and copied short descriptions from wikipedia. Nausea is the most common side-effect of therapy, and the first days are supposed to be the most affected. The cellular effects of the chemo meds run for a longer time, so my blood levels will be on a low probably about day 10, which also will be the time my hair will fall.

Epirubicin is an anthracycline drug used for chemotherapy. The anthracyclines are among the most effective anticancer treatments ever developed. It can be used in combination with other medications to treat breast cancer in patients who have had surgery to remove the tumor. More here: Epiburicin

Cyclophosphamide is used to treat cancers and autoimmune disorders, here's more.

Aprepitant is effective in helping to prevent CINV ( chemotherapy-induced nausea and vomiting) because it antagonizes the NK1 receptor. This receptor is located at the brain stem nuclei of the dorsal vagal complex and is a crucial part of the regulation of vomiting. . Acute or delayed CINV is an unpleasant side effect experienced by over 80% of patients undergoing initial and repeated highly emetogenic cancer chemotherapy.

Dexamethasone has anti-inflammatory and immunosuppressant effects. Dexamethasone is used for the treatment of many conditions including: rheumatologic problems, a number of skin diseases such as erythema multiforme, severe allergies, asthma, chronic obstructive lung disease, croup, and cerebral edema, in addition to other medications in tuberculosis and a number of other infectious diseases.

Granisetron is a serotonin 5-HT3 receptor antagonist used as an antiemetic to treat nausea and vomiting following chemotherapy. Its main effect is to reduce the activity of the vagus nerve, which is a nerve that activates the vomiting center in the medulla oblongata. Granisetron is metabolized slowly by the liver, giving it a longer than average half-life. One dose usually lasts 4 to 9 hours and is usually administered once or twice daily. This drug is removed from the body by the liver and kidneys.

Mesna is used therapeutically to reduce the incidence of haemorrhagic cystitis and haematuria when a patient receives ifosfamide or cyclophosphamide for cancer chemotherapy

In addition, I got 2 pills for each of the following day, one to prevent CINV, and one to support the immune system.

Tuesday, December 16, 2014

the hum of memories & moments

today: 5 days until solstice
today: memories of past snow
today: all this painful world news  
today: a rose waiting at my doorstep
today: tears and smiles


the hum of distant traffic
the hum of memories and moments
bits and wheels of now,
moving a/long
__________4 o'clock
__  __ dusk

Saturday, December 13, 2014

getting ready for chemotherapy & getting to know the emperor of all maladies

Getting ready for chemotherapy...
Just some steps now, then it is time for the upcoming treatments, and with it, for the jump into the unknown land of chemotherapy. After the island time, I feel now more at peace with the idea. It was good, to have this "away"-time to let things settle, and prepare mentally for it. Now that the island time is over, it's all about the logistics of the upcoming treatments, and preparing for it. And there is a whole row of things to prepare.

Here's a very short version of this week:
  • Yesterday, I was at the cancer centre of the hospital, to have a longer talk with one of the assistants in the chemotherapy, about the logistics of the treatment, the how and when, the things to think of. We now also fixed the date for the first session: Friday next week.
  • The day before that, I was at the surgery department of the hospital, to prepare for getting a "port". The surgery is situated in another town, just to add some mix of locations to things. The "port” is “a small medical appliance that is installed beneath the skin to make injections easier”. Here’s more: wiki/Port 
  • The operation itself will be ambulant, and will happen today around noon. I will stay in hospital for 2 hours afterwards, so the docs can see if everything worked fine, and then I can go back home. So I will finally see an operation room from inside, which I was curious about when I had my first operation, but missed it then due to the general anaesthesia.
I just looked for a photo that fits this week better than the one above - maybe this one, with me in the mirror, and this structure which could both relate to the complexity of our bodies, and to the complexity of medical treatments. And it fits that my hair is in it... for that's another thing that will change, and leads to a date that happened earlier this week:

On Tuesday,  I visited a hairdresser who specializes in wigs. That's another item from the list of things I never wanted to get personal knowledge about (apart from fun-carnvial-events). But it makes sense to take care of that now, while I still look like I do. The hairdresser was lovely, she took time for me. She made tea, and then we started with me trying a wig, to see how it is made and how it feels. And then we looked through the choices of wigs together in catalogues, to find those that are kind of similar to my haircut and that I like. We picked 3, and she orders samples now in different shades. The samples will arrive next week, then I will try them. My hair probably will remain for 2 weeks after the first chemo treatment, then it will start to leave me.

Getting to know the Emperor of all Maladies
Parallel to all this, I am reading a book that is both fascinating and intriguing by the way it is written, and by the way it wraps up so many historical and medical happenings / discoveries / developmenents and details, and the personal stories of doctors, scientists and patients. It's called "The Emperor of All Maladies: A biography of cancer".

Here's a bit about it:
"The Emperor of All Maladies is a magnificent, profoundly humane “biography” of cancer—from its first documented appearances thousands of years ago through the epic battles in the twentieth century to cure, control, and conquer it to a radical new understanding of its essence. Physician, researcher, and award-winning science writer, Siddhartha Mukherjee examines cancer with a cellular biologist’s precision, a historian’s perspective, and a biographer’s passion. The result is an astonishingly lucid and eloquent chronicle of a disease humans have lived with—and perished from—for more than five thousand years. It is an illuminating book that provides hope and clarity to those seeking to demystify cancer. It was described, by the magazine Time, as one of the 100 most influential books of the last 100 years, and by the New York Times magazine as among the 100 best works of non-fiction."
(more at Goodreads & Guardian review)

It's good to get a clearer understanding about how cancer works, and how the treatments are working. Since the 1950ies, scientists and doctors are confident that they can develop a cure soon. But so far, that didn't happen - it's a complicated task, as cancer is not a virus or bacteria that comes from "outside" and thus can be targeted by medicine directly. It's own body cells that stop to function properly. They ignore the balance system of our body, and start to duplicate out of their normal cycle of cell growth. Here's the short definition of this complex cellular drama: "Cancers are a large family of diseases which involve abnormal cell growth with the potential to invade or spread to other parts of the body"

The line also tells about the problem of curing cancer: you can't really target those cells directly, as they are not that much different from normal body cells. And in the beginning, it is hard to identify cancer - the cell growth produces no symptoms. Signs and symptoms only appear as the mass continues to grow and spread, and even then, few symptoms are specific. (The advantage with breast cancer is that you can feel it at some point.) As for the cure: the concept of chemotherapy is to catch the cancer cells by stopping their cell growth, as this is a characteristic behaviour for them. But the medication affects the growth of other body cells, too, especially those that also have a higher growth rate: like hair, skin, mucous membranes: that's why side effects include loss of hair, skin problems, stomach problems, etc.

Here are two videos that explain what cancer is, how it is treated, and why it is happening more often as we grow older: What exactly is cancer? + Why Don't We all Have Cancer?



I now started to mark all blog posts about this shadow journey with a tag, you can click here to read them: C is for cancer, and for courage, too 

And more reading notes are online here: bookshelf 2014

Friday, December 12, 2014

Why is the sky blue? (and other blue questions)

Sky & ocean & a sailing boat & a palm tree in the wind - yes, this photo is almost "kitschig" in its beauty, but that's how the view from the southern end of Lanzarote island looks on sunny days: blue sky, blue ocean, and the blue silhouette of Fuerteventura island in the distance.

Why is water blue?
While there, a question of the obvious came up: why is water blue?  I first guessed that the blues of the water is simply the blue of the sky, reflected, but that only leads to the next question: why is the sky blue?

Later that day, and reconnected to wifi, I looked for the answer to the blue. Turns out, water itself is blue - or rather: water looks blue. Here's the explanation: bodies of water appears blue from above, as they absorb the red component of the light that is reflecting from the bottom of them. The effect is stronger when the water is deeper. If you put the same water in a smaller bucket it only looks slightly blue.

But that is only part of the answer. In addition to that, Lakes and oceans appear blue as the surface of the water reflects the color of the sky. Which leads back to the other tricky question:

Why is the sky blue?
Nasa has the answer, here's a short version: "Sunlight reaches Earth's atmosphere and is scattered in all directions by all the gases and particles in the air. Blue light is scattered in all directions by the tiny molecules of air in Earth's atmosphere. Blue is scattered more than other colors because it travels as shorter, smaller waves. This is why we see a blue sky most of the time."
More about it, here:  nasa/sky

More skies from everywhere: skywatch friday
More blue moments from everywhere at photo friday

Have a beautiful sky week ~

Tuesday, December 9, 2014

depth of field, change of sky

A summer moment, for photo friday's theme "depth of field":


Summer, it feels as far away as the island time now. I arrived back home on Sunday evening, and together with the change of place, the focus of things changed, too: from open time and bay walks to catching up and getting things organized and sorted.

I will put a longer blog post together at the end of the week. The next days come with doctor dates, to prepare chemotherapy, one of them is for the insertion of a longer-time "port": a small medical appliance that is installed beneath the skin to make injections easier and not end up with dozens of needle sticks. All those things that are fascinating, but that I didn't really want to need to learn...

But back to the depth of field - here's another photo, a double "depth of field", from a rainy day in Lanzarote:


More moments from Lanzarote island
More "depth of field" at photo friday

Saturday, December 6, 2014

this special sky moment + a silent poem

 A special sky moment i never get tired of: sunrise.
 And double special: ocean sunrise.

Just 40 minutes later, arriving back from my sunrise walk, I took this second sky / ocean photo: this is almost from the same place: a little zen-like stone tower someone created at the beach, Which reminded me of the small stones writing. So I tried, and looked for word to capture the moment and feeling:

At the edge of the bay 
Nine stones turned 
Into a silent stone poem

Good I had the photo with me when walking past it - today when I looked for it, it was – gone. Which somehow is sad, but also fitting from theme: tomorrow our plane home is waiting, and we will be gone, too, and with it, summer. Back home, winter is waiting. (And now, a smallstone-photo is waiting, too, in the sidebar, with the smallstone-link to the previous moments.)


More island moments: life as a journey – Lanzarote 2014
More skies from around the world: skywatch friday
And a new link: the stone tower now turned into a sidebar-link to bring back the previous smallstone moments.

Thursday, December 4, 2014

a new place, you-are-there-reading, mermaids & "to simply live those moments"

A new place 
Since Monday, we are staying in a different corner of Lanzarote: in Playa Blanca, the southern tip of the island. It's the first time we are here, and it feels like a lucky move  - the weather is sunnier since we are here (and supposedly, this is the "sunny corner" of the island, even when clouds are lingering further up the coast. And the the place itself is lovely, it's not a hotel, but it's holiday bungalows. The description of the place sounded good, but then you never really know until you are there if it's only the description that sounds fine (just like with books and their promising blurbs)

A nice thing is that the bungalows here don’t have simple numbers, but names. Ours is called “Christian Andersen”, relating to the fairy tale author from Denmark. Next to us is Pablo Picasso and Leonardo di Vinci. There also is Agatha Christie, John Lennon and Fred Astaire, and various other.

In the photo above, you can see Playa Blanca from the southern end of the settlement. Our bungalow belongs to the first patch of houses you see, with the palm trees in front. It's indeed "at the end of the island". Beyond it, there is just the walkway that leads to the lighthouse at the southern tip, see photo below - that's taken from the same walkway, just some minutes further towards the opposite  direction.

Ocean Read 
To stay in a bungalow named by a writer reminded me of a this essay on books I read a while ago, about "You Are There - Reading" - the special joy and passion to read a book in a place that appears in the book. I looked it up, here's the quote from it: "The practice of reading books in the places they describe" - like reading Homer's Odyssey in Greece, Henry David Thoreau's "Walden" in Walden, James Joyce's "Dubliners" or "Ulysses" in Dublin. (from Ex Libris, Anne Fadiman)

Hans-Christian Andersen is from Denmark, though, but when I looked up his biography, I remembered that he is the author of the “Little Mermaid”. There is an online-version of the tale in the web, and it was a joy to read it, with the view to the blue ocean, which connected perfectly with the starting lines:
"Far out in the ocean the water is as blue as the petals of the loveliest cornflower, and as clear as the purest glass. But it is very deep too. It goes down deeper than any anchor rope will go, and many, many steeples would have to be stacked one on top of another to reach from the bottom to the surface of the sea. It is down there that the sea folk live.."
Here’s the link: Hans-Christian Andersen: Little Mermaid

A Portuguese Nobel Lanzarote writer:  Jose Saramago 

Following the idea of you-are-there-reading, I browsed a bit to see if I can find an author from Lanzarote. There probably are Spanish authors, so looking in English wasn't too helpful at first, but I learned that a rather prominent author lived here for years: the Portuguese author Jose Saramagao, who received the Nobel Prize for literature. There's an interview with Saramago in the Paris Review, which took place on a sunny afternoon in March of 1997, at his home in Lanzarote, just some miles from here. Here's a bit from it:
Interviewer: "When you moved to Lanzarote, away from the surroundings in which you had lived and written for so many years, did you accustom yourself immediately to this space, or did you miss your previous work space?"Saramago: "I adapted easily. I believe myself to be the type of person who does not complicate his life. I have always lived my life without dramatizing things, whether the good things that have happened to me or the bad. I simply live those moments."

(and here is the second photo, with the counterpart view)

Carmen LaForet + The Week in Culture
Another writer who is related to Lanzarote is Carmen LaForet, who wrote a book with the tales from the Canary Islands, combined with a travel guide. Her most known work is a novel, though: "Nada" / "Nothing". I hadn't known her, she wais " a Spanish author who wrote in the period after the Spanish Civil War. An important European writer, her works contributed to the school of Existentialist Literature". When I looked for an interview with her, I arrived at the Paris Review again - but then first thought: wrong link, as the page that popped up wasn't an interview, but a blog-style culture article with various themes.  Turned out, this is a series, and the one that popped up was again a you-are-there-read: A week in culture - writer Carlene Bauer, who recently has been to Spain, and writes about learning Spanish, reading LaForet, and various culture encounters, like this one with a note on the spell of reading books:
"Appointment in the city with an editor. After Spain, I have been wanting to read more Spanish-language fiction. Recently read Carmen Laforet’s Nada, which is a dark haunted attic of a novel set in post–Civil War Barcelona, and then, finally, after meaning to do so forever, have just started Roberto BolaƱo’s The Savage Detectives. It is my subway companion, and the thunderous hurtling of the train is the perfect accompaniment to the book’s hectic, shuttling sentences. I am having the terrible and embarrassing problem of instantly realizing a book’s genius, but also failing to find instant purchase in the narrative. I’m trusting that I will soon come to love this, though. Editor I meet with sees that I am carrying book, says 2666 had her under a spell that made her prefer its company to that of humans."
Here's the whole series: Paris Review / Week in Culture

Now, for an island walk, to enjoy the ocean moments, and to take some photos. (which now are included above. i also learned a word: "lighthouse" in Spanish is: "faro".)


Related links:

Tuesday, December 2, 2014

La Isla, or: i is for i/dentity

The story below, "La Isla", is a story I wrote a while ago. I thought of it today when I walked along the ocean. Another thought I had: that I want to revisit more of my stories in the next weeks, both short stories and travelogues. And turn the time to come, the time after the journey, into a time of a revisiting journey.

Reading the story now, in this different contest, also brings the reflection on how my life will be shaped by the illness I am going through, both in subtle and not-so-subtle ways. I am so used to my long hair. How will I feel with short hair, and without hair? How much is my identity defined by my appearance? How will this "I" feel that otherwise never would happen? And strange to think that nuns do the same, letting go of their hair, and so turn visibly into another person

Right now, the thing that worries me most is that I don't know how the coming weeks will shape out. If the therapy  (and I still am not used to typing the word: chemotherapy) will leave me with enough energy to see it as a different kind of journey, one that I wouldn't have chosen, but that will bring its own kind of encounters and reflections, and places that I havn't been to before. If the therapy will allow me to read and write, to go for walks, to drive, to work, to not feel too miserable.

There's no real way to know it beforehand, though. Which actually is true for most of life: we don't know. The weather here is a playful reminder of that: it has been a strange and rainy summer and autumn in Europe, with forecasts often promising weather that never arrived. It's the same here on the Canary Islands this week: there is an unusual amount of rain, and the weather models don't seem to fit. So despite checking forecasts, you just don't know - while the sky keeps teaching its own lesson: after rain, there will be sun. And after sun, there will be rain. And so on. And on and on. The very way it always has been, both for the weather, and for life.

But now, the story:


La Isla

There was something magical about the island. Maybe it was the closeness to the elements that made the difference, the presence of those fire mountains that were only sleeping, that would wake again one day.

Isla de fuerta, the island once was named. Now it is called Lanzarote. She had been there years ago, in the time before digital cameras, in the time of just taking a few photos with a pocket camera. The intensity of its colours remained in her memory anyway. The white houses. The black beaches. The red hills. The green plants that were growing on lava earth. The blue water. And the sand that sometimes was carried by the wind, all the way from the Sahara, white like snow.

When she woke the next morning, she looked out of the window, and was drawn to the beach. She walked through the sand barefoot. Picked up a black stone and a white shell. Like back then. She even remembered the words she had learned, all those years ago, those Spanish basics of life: Yo soy - I am. Tu eres - You are. And the common greeting phrase: Buenos Dias. Good Day.

Everything was moving there, every single grain of sand. That's what she realized some days later, at the beach, where she stood still and watched the wind move across the ground. And was stunned. For what she saw was the miniature of a dune desert: the beach, a lake of motion, a genesis of sand, following the path of the wind. She kneeled down, and touched one of the tiny dunes, wondering where it came from, and how far it could travel. The dune gave its answer by gliding on underneath her hand.

Back at the bungalow, she looked for a book to read and picked up the one she brought from the library, a book of essays from Adolf Muschg, titled „Die Insel, die Kolumbus nicht gefunden hat“ – „The island that Columbus hasn't found." The book, it was about Japan, not about Lanzarote. She knew that much when she picked it, without idea how fitting it was nevertheless: one of the places Kolumbus wanted to find was Nippon, this city Marco Polo told silver roof stories about. And the islands Kolumbus started his journey from was - the Canary Islands. The very string of islands Lanzarote belonged to.

In those days, Lanzarote was covered with forest. Later, the forest was turned to sailing boats by the Spanish sailors and the army. A fact that was hard to believe when you saw the effort it nowadays took to just grow one single grapevine.

To protect the plants from the wind, and with it, from the moving sand, the farmers built strings of stone circles on their fields, which made the fields look like landscapes of abstract art. The wind didn't seem to mind. It kept blowing, across the fields, across the mountains, changing its direction with the names of the days, lunes to jueves, viernes to domingo.

The story of Columbus made her curious for more snippets of history, and so she headed towards Teguise, the oldest town of the island.

There, she learned that the first settlers of Lanzarote probably were Arab Berber groups who sailed to the islands from North Africa. After the Berbers came the Spanish sailors, in the 13th century. And with them came colonialization. And the slave trade.

Walking down the streets, she tried to imagine life back then, and arrived at the church in the middle of Teguise: Nuestra Senora de Guadalupe, it was called. She tested the doors, but they were closed.

In a sidestreet, she noticed a flag, it’s presence a reminder of the closeness to Africa and the ongoing conflicts there. The flag, it carried a plea for a different life, noted not in Arab or English, but in French: Sahara Libre.

Back in her apartment, she looked up Arab key phrases and words, something she had never done before. The first word she learned was marhaban – which meant Hello. And next, in the unyielding logic of being, ila al’likaa – Goodbye.

That evening, in good time for sunset, she went for a walk along the shores of the island. She watched the seagulls while she followed the curved line that separated water from sand. The sky kept changing its color as the sun neared the horizon. She took a photo, then another, and kept walking, on and on, until it was only her and the ocean, her and das Meer, her and la mare.

Walking back, she followed her own trails for a while, and couldn’t help but wonder how it would have been to grow up here, on this island, surrounded by water. She would have been another Yo, that much was sure.


Related links: