Roos, Rust en Regelmaat

Pinballs of stress

2012-02-11T13:44:00.007+01:00

Left - right - back to the left - left - back to the right - right - up - down and almost through the hole - back to the right - left - and finally... the ball is out.
I lost.

My life these days is like a pinball machine. Filled with balls of stress. I get shot from one bumper to another, and try to stay in the game as long as possible. Yet I know the moment is coming where I'll lose.

Cooking is challenging: not only is Kenji barely eating, íf he manages to eat something, his food has to be rich in protein, calories and potassium and low in sugar. With every bite he hesitates and I stress out - even more when he confessed this morning how he has already lost a kilo since he's home.
Cleaning is obligatory: Kenji's immune system is next to nothing and the house has to be kept clean on a daily basis. Only my arm muscles hurt and I can barely hold my grip on a ladle when stirring the soup, let alone moving a floor mop. Every bit of dust and speckle of dirt reminds me that I should do more. As do the empty underwear drawer of the boys and the full garbage bin.

And the emotions? Are running high. No need to elaborate further. Being the one who it all comes down to is nerve-wracking (and frankly almost impossible).

Glad versus sad

2012-02-10T11:07:00.000+01:00

I haven't seen the boys smiling this broad in a long, long time. They cuddle up next to Kenji on the couch and read a "car book" with him (he orders glossy Range Rover or Mercedes sales catalogues for them, a brilliant act of cancer-customized-fatherhood). Early this morning Big Brother yelled from his bed: "Papa, are you there?" Kenji made an affirmative sound. "I'm so glad you are home."

Fifteen minutes later Big Brother is in tears. "I'm sad that papa is still ill." The boys cannot explain the puffy Prednisone face or the strange frizzy hair growth. The fatigue. The struggle with food intake during and in between meals. The stressy toilet visits.

I can. And nevertheless I feel the exact same way as our boys. Happy to wake up with Kenji and gloomy to have an ongoing reminder of the unwanted life lying next to me. Kenji is still Kenji, as papa is still papa, and yet everything is changed. The confrontation starts as soon as I open my eyes: there isn't a single moment of escape anymore.

Adjusting to a four person household is all about 'Glad' versus 'Sad' - except it's unclear which one of the two will take over.

Connecting (the dots)

2012-02-09T13:45:00.004+01:00

Early Christmas morning, when I woke up on my own once again, I found a picture in my inbox. Buddha and a lit candle, "from our home to yours".

A phone number saved on my mobile. I intended to call so many times, yet I didn't.

Today there was soup. And hugs so firm I never wanted them to end.

For over a year I've been explaining. Explaining the circumstances and explaining myself. Because I have changed. Not a little but an awful lot. As grateful as I am for the 180 degree change in my life, the life that caused the change was one I not at all envisioned as mine. Some are able to sympathize with the abrupt adjustment, some want to (yet cannot help but miss the 'before' Roos), and others silently move on in a different direction. One that would have been mine as well, if it hadn't been for those rotten circumstances.

I talked. And noticed after a while that I wasn't explaining. She and I were connecting the dots.

Probation [edit: or release]

2012-02-08T17:26:00.000+01:00

If hospital is a prison, Kenji is out on probation.

"Why is papa coming home just for one testing night? I want him to be home
for lots and lots of nights." Little Brother speaks up his mind. And apparently there are many why's on his mind. "Why are grandpa and grandma coming?
Why does papa need to go back to the hospital? What is happening tomorrow?"

I explain that papa and mama have an appointment with the doctor. Maybe we can convince him to let papa return home. "Can I come too?", Big Brother asks. "And me?", adds Little Brother. Our two mini diplomats would be more than happy to plead papa's case.

"It is grandpa and grandma time already?" Little Brother cannot shake off the feeling of having to say good-bye to papa again. Neither can the rest of us. I sense how my calm could benefit us all: being fully in the present moment and celebrating the reunion of our family, instead of anticipating tomorrow's events. Little Brother gets his first lesson in mindfulness; I tell him to focus on "now" only.

Yet at night I lie awake. A heavy brick of fear is pressing on my chest: "What is happening tomorrow?"

[Edit] I handed in the boys' petition and the doctor accepted it with a smile. After an intense hospital month in which Kenji showed über magnificent fighting skills, Kenji was discharged for real this afternoon. Even though we're nowhere near recovery, I want to shout the news from the rooftops: Kenji is home! HOME!

School of life

2012-02-07T10:30:00.000+01:00

When Kenji and I started looking for primary schools for Big Brother, he was not even one year old. Living in the big city has its price: as absurd as it may be, signing up your child at one is obligatory. We found a relatively small Catholic school and immediately felt at home. Its atmosphere reminded us both of our own primary school back in the eighties, so we let our gut decide for us.

Yesterday I set foot in the building again. I was supposed to talk about Big Brother and 'the circumstances' but the conversation ended up being about me. Dealing with leukemia and a stem cell transplantation is serious business, but when it comes to regular cancer stories, also rare business. I hesitated where to begin explaining the story without turning Big Brother into a weird case...
The supervisor set my heart at ease like nobody else could have done. She took me into her confidence and shared how in the past her little daughter was diagnosed with ALL and had undergone a stem cell transplantation as well. What are the odds?

Due to 'the circumstances' I meet strangers, from every corner in the world. And after shaking their hand or reading their words, I wouldn't dare calling them strangers anymore. The line between a stranger and a friend is inconceivably thinner than I éver held possible. As I plowed through the snow, the brightest sun light shined on my mind: "Not only am I not alone, I am surrounded by friends."

Mirror Monday #38 [@ Lloyd Hotel]

2012-02-06T13:17:00.000+01:00

Over coffee at the Lloyd Hotel I pondered my blessings. How things continue to work out perfectly by themselves. The house got cleaned and the fridge got stocked while I was at the hairdresser. My friend who picked up her empty casserole offered to lubricate the lock of the cargo bike and - hurrah! - it wasn't frozen anymore this morning. My boys could share cool snow stories at preschool; even though they didn't play with me, at least I had no guilty feelings of having had to deny them any outdoor fun.

Over the weekend I broke down and by doing so, I didn't even have to ask for help anymore. The message was loud and clear.

Magazine spotting

2012-02-05T19:49:00.001+01:00

I so felt like cancelling my hairdresser's appointment. Voluntarily looking at my pale face and especially at the bags under my eyes for an hour? I didn't see the asset of going at all, yet it was too late to cancel. After an confrontational mirror session of 70 minutes, I was quite relieved to step outside again. The frosty air lifted my spirit and suddenly I noticed how the new haircut gave me just a tiny
bit of va va voom.

Enough to cross the street and enter the American Book Center, my all time favourite bookstore. I browsed the magazine section and spotted the latest issue of Monocle, Kenji's current most preferred magazine. And it had a special on travelling in Japan! I grabbed my mobile and called him: for sure, he wanted the issue. I treated myself to the January and February issue of Martha Stewart Living and smiled when heading to the counter.
On the street I was hit, not only by the blistering cold but mainly by reality. Obviously I experienced the whole life with cancer shabang outside, which nevertheless meant that it had been absent inside. I had done something from 'before' (both Kenji and I used to hop inside the ABC on a regular basis and would call each other upon spotting a good read) and it was still equally good right now.

No need to delude myself with a feel good story from the past. A haircut and a dash of Martha, that's all.

New York in my hands

2012-02-04T11:30:00.003+01:00

One look at the alarm clock: only 08:05... Why didn't I sleep longer? That was
the main purpose of this weekend, right? Sléép. Before next Tuesday the house needs to be cleaned. When am I'm going to do it? Should I hire a cleaning lady?
I should go over the finances and see if I can afford one. The finances, yes, that is on the list for this weekend. Calculate this months expenses and do the tax stuff. Oh, and the bills that I need to sort out. Maybe I should ask the accountant a discount again? He won't do it, he already gave me one last year. Besides I have to look up if there are any tax benefits to apply to our medical costs of last year. The fridge! I should clean the fridge too, haven't done that since Kenji came home after the transplantation and it should be done every month. Maybe I can do it on Monday morning if the boys are at preschool. But then I'll need the cargo bike to go back and forth really quick. And the lock is frozen. So latest tomorrow I should go out and try to fix the lock with some defrosting oil. Let's hope that works. Oh damn, I have to go to Big Brother's primary school Monday morning so I cannot do the cleaning on Monday. Maybe tomorrow before the boys return? But then I cannot lie in and I should catch up on sleep. When am I éver going to sleep?

When I put my glasses on, the alarm clock states 09:26. Time for a double cappuccino in my Starbucks Central Park mug. I hold New York in my hands, cover my to do list with yesterday's preschool coloring sheets and take a breath. I do my utmost best not to cry and prepare another double cappuccino.

Saddening snow

2012-02-03T19:09:00.003+01:00

On our way to preschool we spot the first snowflakes. Big Brother is super excited: ever since last winter he has been longing for snow so he could make a snowman again.
I'm meeting Big Brother's teacher to evaluate his education and skills, since he'll be leaving for primary school soon. As expected, she tells me that he's thriving there. That he feels safe enough to approach her whenever he gets sad. That there have been periods where he sat on her lap, whimpering, and only played on his own, silently in a corner. In short, I heard about a grieving Big Brother whom I never encountered at home the past year.

When I leave the building, a tiny layer of snow has fallen. I swallow my tears. The last time I walked in the snow was in France, December 2010. Location and date are irrelevant: it was in my 'before life'. The four of us made snowmen in the garden of the propriété privée; Kenji's father took family pictures. Kenji however looked thin and strangely pale, but his proud smile while holding his little boys and wife made you forget his unusual appearance. Twenty eight days after that picture the 'after life' would come knocking on our door.

The boys are off to their grandparents for the weekend. I packed serious snowmen building gear for them to be able to play outside as exuberantly as possible. The first snowman of 2012 won't be build by mama, let alone papa. If only we were still in that French garden.

Tell me more

2012-02-02T20:14:00.004+01:00

Once upon a time, in dark times, I received an email titled "Tell me more".
And it continued saying "I can take it. Please give it to me."

Those three lines were three life lines. Even before my fingers began to move on the keyboard of my computer, I experienced immense relief. To be blessed with a listener who sends her love unconditionally (my reply of course could have contained anything and to be able to take that as a starting point was truly liberating) was and is a tremendous gift.

My times are still dark. But regardless the darkness, there is light in my heart. So when an old friend briefly emailed me about her fears for her unborn child, I knew I wanted to pass on the love. Without hesitation I repeated the three life lines to her. Please let me take it.

Karen Maezen Miller once wrote me "My life is yours". I didn't quite get the full meaning of those words until I felt the deepest compassion for my friend in her serious struggle with her pregnancy. She faces the fear of 'what if' on a daily basis - just like me. And she would go to the end of the world for her husband and her two boys - just like me. Expressing my love not only brought me more love, it also created a little hole in the darkness for my light to shine through.

The asking hurdle

2012-02-01T08:40:00.001+01:00

I don't order take out; I order a neighbor. I have the sweetest neighbor who makes even sweeter lasagna and when I find myself below zero and in need of a shot of love, I ask her for a meal. Yesterday she dropped off another casserole and I couldn't utter a single normal word. I was so tired I didn't know where to point my gaze and how to express a proper thank you (not that she expected one, but I wanted to).

That brief moment at the front door was a red flag. Despite the fact that I'm nowhere near recovery - I actually caught a cold as well - I jumped right back in the pool of dirt that presents itself in front of me every morning. No one else takes the boys to preschool, cleans up the mess, or irons Kenji's laundry. Plans meetings with doctors, thinks financial strategies and organizes the weekly meals. It is a lot - and it's even a lot more because I've been doing all of it for over a year. With a smile.

I hate being the one who asks. Over and over, and yet I have no choice but to do it again. And to give me a hand in taking the 'asking hurdle', there was this amazingly colorful love in my overflowed mailbox. Love that underlined that I'm worth asking for and getting help.

I know what I want

2012-01-31T08:44:00.000+01:00

It's often forgotten that I used to run my one man company. As an independent art adviser I chose the non conformist kind of working life: almost always without money, but a permanent ticket to freedom in my pocket.
Since my turnover tax form was due yesterday, I was back in business for a change. I hired the trusted team of Tinky Winky, Dipsy, Laa-Laa and Po for the boys and turned the kitchen table into an office. Plowing through bills - zero debtors unfortunately - I quickly found my working vibe again despite my pounding headache.

My inbox still contains invitations for exhibition openings from local and international galleries, for art fairs and conferences. I never go but they loosely connect me to what was. To what I had, that priceless ticket.
While I'm cooking dinner with my last bit of energy, an email from the Courtauld Institute of Art pops up, a prestigious institute in London where I attended a conference years ago. The subjects makes my heart skip a beat: Buddhist Art Forum (11-14 April). I read about "a major event of an exceptional kind, seeking to address the philosophical issues concerning Buddhism and art in a profound and holistic way". And I know what I want.

My ambition hasn't left me, not after the boys were born, nor after Kenji got cancer. Except ambition isn't the ultimate ticket to freedom anymore. Tears flow in abundance for having to miss out on this opportunity.

Mirror Monday #37

2012-01-30T12:26:00.000+01:00

After sharing the gory details, I might as well show you the gory details. When I started Mirror Monday, going bare was totally unthinkable. I put on make-up even before I take out the trash or go out for a carton of milk. Yet the aim of the series is to document what I look like on Mondays. And today, I look like this.

100% sadhaustion guaranteed.

Gory details, or: Who stole my hammock?

2012-01-29T19:47:00.001+01:00

I cannot recall a blacker day solo than today was. Pitch black.
From sadness.
From exhaustion.
From sadhaustion - because where one begins, the other ends and vice versa.

My mood was way below zero. The 24 hours in bed were divine: the fever and the vomiting were the combined free card I had been needing for weeks. But where both Big Brother and his uncle (the happy trooper who cleaned up his nephew's vomit) managed to get rid of the virus after a day or so, I was knocked down entirely. Sheer exhaustion prevented me from recovery and the slightest movement caused dizziness and nausea again.

Calling for help was the hardest thing I did. The second day it was even harder, not to mention the third. And on day four I still was as helpless as when fever hit me. To be surrounded by two toddlers who wake you up several times at night and cry, fight and whine non-stop while you are too tired to get engaged in play or take them outside, made me feel a total prisoner. Not to mention the fact that I haven't been able to visit Kenji in days and that sharing my frustration and sadness over the phone was a bad idea...

I need my hammock back - and fast. However, another break to catch up on sleep is nowhere in sight.

Sleeve

2012-01-28T19:53:00.001+01:00

Time has become a crucial factor in our lives. We keep on counting, and yet the counting is leading us nowhere. Kenji is in the hospital for three weeks now and according to the hospital's plan of approach, a couple of more weeks will follow. We simply have to take time as it is.

But the minute I got sick, I missed my love more than ever. And suddenly the boys wanted their papa much harder. They didn't understand why on earth their auntie was changing mama's sheets. Papa should do that, right? It comforted me beyond words to see that Kenji in their minds is still fighting fit too.

Me being temporary off duty stirs up another round of questions from Big Brother. "Why is papa still in the hospital? Why is it taking so long? Why does he need tube food?" While I'm answering my eldest as best as I can, I see from the corner of my eye that Little Brother peeks in his sleeve. Kenji's tubes [the ones of his PICC-line, that contain his parenteral nutrition] are visible to the boys from the opened cuff of his shirt. And I immediately get how a worried Little Brother is double checking if there aren't any tubes coming out of his own pyjamas' sleeve.

Little Brother's simple gesture breaks my heart. Life shouldn't have to be like this for a toddler.

Single [2]

2012-01-27T19:52:00.002+01:00

After a year of single parenting - some days more single than others, but not
one day like it was before - I thought I knew what this kind of parenting was like. Until yesterday morning I felt what it was like.

After another round of nightly vomiting I notice how dizzy I am. Close to fainting, so I waddle back to bed. Except there is no rest for the mamas: Little Brother's green diarrhea is all over his diaper and pj's and a little later Big Brother throws up in the double bed next to me. I clean up the mess as best as I can and try to get the boys at the breakfast table. In spite of my feverish efforts, every single cell of my body clearly refuses to cooperate.

I literally cannot move forward and it scares the hell out of me. I face the point where trying just a líttle bit harder isn't working any longer. No magic boost button to be found. And I feel desperately alone. As if a big black hole is opening in front of me and is ready to devour us all. My mind races to come up with a solution for the boys; I think of the few single moms I know and what they would do. Call for help. And so I call.

Afterwards I sleep for the entire day and the entire night. If only there were more days like yesterday.

Today's recap

2012-01-26T19:40:00.000+01:00

Sleep. Vomit. Sleep. Vomit. Sleep. Vomit. Sleep.
Sleep. Vomit. Cleaning up Big Brother's vomit. Sleep.
Sleep. Almost faint. Vomit. Sleep.
Sleeeep.

After exactly a year and a week, fever did knock on my door. I crashed.
And since it took me so long to get here, I crashed with flying colours.

Shot in silence

2012-01-25T08:34:00.001+01:00

Our health centre doctor is from Russia and wears a vintage Cartier watch combined with an original designer dress - this time I spot Moschino. Her Dutch comes with a very thick Russian accent, however she also assesses the language development of toddlers. Not your average doctor I would say.

At his check-up Big Brother builds the obligated block tower, passes the eye exam and plainly refuses to draw. Excellent overall score! I didn't mention the vaccination at the end to him though - and the minute the doctor approaches with a yellow syringe container I get totally queezy. One exactly like that was in my kitchen cabinet for the chemo syringes, another in the sink cupboard for the blood thinner syringes and these days there's a mini one in the linen closet for the insulin needles. All of a sudden I'm done. Kenji and syringes, uhm O.K., but my boy? Oh no.

The doctor tries to distract Big Brother - "Lljook, lljook at ze doll!" - and tells him the shot will be over before he knows it. He's not listening and closely watches the syringe heading for his left upper arm. I in turn have my eyes fixed on the doll. I only realize my brave boy is done when I hear the syringe falling down in the container. Big Brother himself didn't make a sound.

Thank heavens the health centre has butt-ugly plastic dolls with pink hairs at hand. For the mamas, that is.

Mesenchymal stem cells [2]

2012-01-24T07:51:00.000+01:00

"Your stem cells have just arrived. Do come over and have a look!" What better party invitation for the fourth time we're standing face to face with stem cells.

I don't remember much about the arrival of cord blood unit #1, except Kenji's hematologist who offered to take pictures the next day. So after the stem cells
of unit #2 had entered Kenji's body, I watched an alienating slideshow on my camera about the defrosting and preparing. By the time the mesenchymal stem cells were issued, we were in a hurry and in no mood for picture taking. In hindsight it wasn't so bad that evidence of round number three was lacking: the mesenchymal stem cells failed to do the trick...

Kenji's in for yet another stem cell transplantation. The two of us take a seat in a room that is dominated by a huge nitrogen filled canister. When the thick white smoke evaporates and the frozen mesenchymal stem cell bag appears, we feel like we've ended up in a really weird movie. Kenji rushes back to his bed, while I'm allowed to witness the defrosting process.

After two rounds of rinsing the little stem cell bag is empty to the last drop. The male nurse confesses how he has silently blessed the bag: "Over the years I have seen a lot of inexplicable things happening here." We aren't of his religion but that has never been more irrelevant, so we respectfully thank him. And cling to his hope.

Mirror Monday #36

2012-01-23T10:54:00.000+01:00

When I found myself on a stepladder in the bedroom at 10 PM, hanging Ingrid's garland above our bed and rearranging Martine's pompom, I wanted to hold on to that moment forever. Interior decorating (or casually messing around with furniture) is so me - yet that part of me hasn't been around much lately.

Time, it's always about time. As soon as I sit on my pillow, all sort of plans bubble up. Instead of quieting down, I get excited as if my body is in the starting blocks, ready to go go go! The true me resides on that pillow, the Roos who isn't a mother, who isn't a wife, who is 'just' Roos.

Of course I'm all of the above - and that's more than O.K. But after that brief worry-free moment on the stepladder I whole-heartedly missed myself.

Taking out the trash

2012-01-22T14:04:00.000+01:00

Apparently I allowed myself one Procrastination Week - and by writing about it,
I put a halt to it.

Yesterday I tackled as much laundry as possible and wrote a decent grocery list. After dinner the kitchen table was covered with folders, bank statements,
tax papers and the like. I faced the financial facts and was blessed to have two pairs of eyes watching with me. They drank Diet Coke straight from the bottle,
I was given an excellent Châteauneuf-du-Pape: whatever makes your creative mind tick!

We talked and calculated until after midnight - nevertheless I had a new project waiting for me first thing in the morning. Together with the boys I filled garbage bag after garbage bag, and ended up with a cleaned out bedroom. Big Brother and Little Brother took turns in carrying the bags to the front door and looked like little super heroes. In the absence of the master of the house, they were the ultimate stand-ins.

I expected to find monsters under our double bed, just as I did when unriddling our finances the evening before. There was nothing but fluffs of dust.

Good night phone call

2012-01-21T13:07:00.007+01:00

K: "I'm doing my very best."
R: "I know. So do I.
Guess what, when my mind drowses off I suddenly find myself in a street
in Pienza. Or Lucca."
K: "I was thinking of New York today."
R: "That's even better, New York. Good for you!
We did it. We did all of it."

K: "Do you still know who I am?"
R: "I do. Of course I do."

Kenji ordering huge chunks of meat at the butcher shop in the Via San Zita or Kenji waiting in line for his Double Shackburger at the Shake Shack in Madison Square Park. How could I ever forget? The love of my life is not someone who requires digging in my memory: in my heart Kenji lives on fighting fit.

Procrastination avalanche

2012-01-20T19:59:00.003+01:00

Last year Kenji bought me an issue of Real Simple that had 'Stop Procrastinating' on the cover. It became a running gag in our household, because Kenji himself is without a doubt a Master Procrastinator. Not me, I'm always known for being well organized and not satisfied before I get to the end of my to do list.
And so the article didn't bring me new insights - the one person who cóuld have benefited from reading, laughed every time I waved the issue under his nose. Stop procrastinating became our slogan when we needed to stirr things up, with a smile.

Over the past few days the procrastination avalanche came tumbling down and has covered me completely. I'm so tired, I keep putting things off; like hiding under the duvet for five more minutes in the morning. And press the snooze button again. My every action is preceded by a 'in a moment', 'not now' and more of the like. I keep reaching for the proverbial duvet, for the non-thinking minutes to take a rest and recharge.

As a result my fridge is empty and remains empty. I freeze in my summer clothes because my winter ones reside in the laundry basket. My hair is in a continuous pony tail since my intention to refill my styling products dates from, umm, a while ago. Patching up each temporary solution with another temporary solution isn't working. But to come up with a solid one? I'm way too exhausted to start. Maybe tomorrow.

One year

2012-01-19T15:42:00.001+01:00

I'm ironing Kenji's shirts and my thoughts go to today's piece. Numerous angles to tell the story of the anniversary we never asked for and at the same time the anniversary we thought we weren't given.

Let's stick to ironing. In eleven years I have not once touched Kenji's shirts. Not once - it's worth repeating. Kenji does his own ironing, in his own pace and with his own peculiarities. His shirts cost a small fortune and are treated as relics. Objects of religion. Style as faith, far from dogmatic and always inspiring, is one of the main things that characterizes Kenji.

Yet I should write 'characterized'. Because the old Kenji is gone. I do the ironing - as I do, and continuously have been doing, anything and everything for the past year. The new Kenji knows. Regardless his frailty or my facade, he knows damn well to what cruel extent his life with cancer has affected mine.

And the worst thing? That I don't know how to iron. Seriously. And that I long for a wrinkle free life.

Future

2012-01-18T10:10:00.004+01:00

I am alive.
I am healthy.
I am strong.

Being alive, from the simplest effortless breath to the most intense confrontation with the evanescent, made me feel guilty for a long time. Because, surely, I did look death in the eye, but it wasn't my life that was on the line on a daily basis.
Only now I realize that 'being alive' means 'being in life'. Living. Acting. Changing. Growing. Laughing. Moving from one minute to the other, but with a vast perspective. 'I am alive' in consequence equals 'I have a future ahead of me'.

And all because I am healthy. Over the past year I haven't called in sick for one single day. There was no one to call to, no one to cover - yet at the same time my body performed miraculously well. A stunning 365 days without even a hint of fever.

I've proven my strength. To myself, and maybe unintentionally to others as well. Cancer has made so many aspects of my old life disappear, though I have gained a deep sense of trust. Belief in my capabilities and my vision. If only those finds could make up for what I've lost. Nevertheless, on the eve of the first anniversary of acute lymphoblastic leukemia, it dawns on me that me and my future are definitely worth fighting for too.

Notes to self

2012-01-17T19:11:00.001+01:00

#3
People, people, people.
My plate is so absurdly full that it could easily contain a ten-course dinner.
"When faith in your Self is lacking you find yourself hurried by others in every possible way. At every encounter you are no longer your master: you are driven about by others this way or that." *

* Zen Master Rinzai, The Rinzai Roku (The Sayings of Master Rinzai, translated by D.T. Suzuki)

Mirror Monday #35 [@ Lloyd Hotel]

2012-01-16T13:29:00.002+01:00

I had to do some research and instead of buying newspapers, I spent the money on cappuccino while reading newspapers. The best of both worlds, especially in a stimulating environment like the Lloyd Hotel. And since it's Monday I packed my notebook ánd camera and took this weeks portrait in the ladies' room.

Even though me and my camera were having fun - I kept hoping no one would enter and sneak up on me! - my eyes on the picture tell me that fun is the furthest thing from my mind. Making this portrait series has turned out to be such a profound way to pause, step back and quietly face the truth. (The lovely scarf is a gift by the even lovelier Anki and Casper.)

Rock with you

2012-01-15T13:37:00.004+01:00

I leave the house for my Sunday-morning-shower-duty at the hospital. A relieving break from the various medical actions - to my surprise I found myself shaking 14 blood collection tubes upon Kenji's latest hospitalization. His warm blood in my hands made my stomach turn. A washcloth and bottle of body lotion belong in my comfort zone way better.

The commuting brings me music, much needed groove for the day to come. Kenji introduced me to 'pre-Bad' Michael Jackson, right after we met almost 11 years ago. Our age difference of three years gave him a head start of two LP's and I remember Kenji playing the early eighties Mike to me. "Quincy who?" I asked when Kenji pointed out groovy basslines and kept on talking about the marvels of Quincy Jones' production.
'Off The Wall' sets my feet in motion and makes my mind drift off to the happy days when Kenji tapped his fingers on the table on the rhythm of the drums, moved his hips and his shoulders on the bass and sang along while looking me in the eyes. When my guy dances, he owns the world.

The Kenji who occupies a hospital bed couldn't be farther removed from the Kenji who rocked with me. Yet I am so determined to cling on to his smile and bright lit up eyes that used to come with his cool moves.

And when the groove is dead and gone

You know that love survives

So we can rock forever on.

Stamp

2012-01-14T09:15:00.003+01:00

I had an hour to get ready. Threw a pizza in the oven, touched up my make up and found peace with my outfit - there wasn't time to change. From business to hospital to cocktails. Why not?!

The boys were gone for the weekend. I again had to leave Kenji behind on his desolated island. In order to forget I chose to leave the empty house as soon as possible. Hop on the bike and ride into the darkness. Accompanied by a friend who doesn't ask but listens. Who has concert tickets for two and takes a picture of my hand with a stamp on it. For your blog! Because in the midst of grief, frustration and fear I went to see Lianna La Havas. A lady who's opening song not only gave me the chills but actually made me cry in secret.

Air

2012-01-13T19:06:00.002+01:00

This morning I hopped on my bike and my legs loudly protested. No matter how much effort I put in moving the peddles, it felt like my last bits of energy were vanishing into nowhere. Slowly I plowed through a sunlit Amsterdam. Ah... sun!.

Until I passed a bicycle repair shop, descended and asked for a bicycle pump. I was allowed to borrow one and while my arms were moving mechanically, my held back emotions took over. I firmly put my boot down on the pump stand and gave the stupid pump my all.

What followed was an effortless ride to my first business meeting in two years. There was nothing wrong with my energy level or my leg muscles - flat tires simply won't get you anywhere. Over coffee the line "It's O.K. to be ambitious" hit home in a way I never assumed possible. Apparently not only my tires were filled with air.

I didn't ask for help. I stopped and asked for air.

Weeks on end

2012-01-12T12:45:00.000+01:00

Last Monday morning when Kenji was still at home Big Brother said to me: "Mama, I have a good idea. If papa is in the hospital, the three of us can go to the zoo again, O.K.?"
"Yeah!!" concurred Little Brother.

Hearing the truth spoken to you like that is nothing else but heartwrenching.

Well, luckily for the boys, the newest medical plan of approach comes down to Kenji staying hospitalized for weeks on end. Plenty of opportunity for them to spend some quality time with mama, who won't be distracted by caring for papa.

The problem is that I'm distracted by grief now. It isn't the time span of the hospitalization per se, but the ever increasing distance between our life with cancer before the transplantation and the one after. Kenji drifts away further and further and I am facing more and more 'us-things' on my own. In some aspects the solo life I feared so much has already begun - that painful realization momentarily takes my breath away.

Pasta through a straw

2012-01-11T08:28:00.007+01:00

At breakfast I have to break the news to Big Brother and Little Brother that I will be leaving for the hospital soon. I didn't even get the chance to tuck them in last night and I hate to go already.
"I need to talk to the doctors because they have to take better care of papa."
"Why?" - the most common answer nowadays.
"Because papa needs to get stronger."
"Sure, then he can play 'Car Town' with us again. And exercise again!"
'Car Town' is the boys' favorite game with papa. Sit on your knees on the carpet, display the fleet of cars meticulously and subsequently drive them around the four sides of the carpet, one by one - with a lot of "wroo-hoom" noises like only papa can wroom of course (according to the boys I utterly fail to deliver a proper wroom). Kenji hasn't been able to come off the couch for weeks, let alone sit down and play with his sons, who beg him for 'Car Town' every single day.

At dinner I fill the boys in on my diplomatic mission of the day. I love how they are getting older which enables us to have real family meetings like this.
"I'm sorry I was gone so long today, but it took the doctors a lot of time to come up with a plan for papa. You know how papa is having difficulty eating right?"
"Right."
"Papa will be getting his food through a tiny tube. Then he won't have to do his best so much when it comes to eating real food. Something like the 'shakies' [Kenji's additional feeding, bottles with a straw] papa drinks, but then áll the time. Because, what do you think, can you squeeze pasta through a straw? Or rice? Or potatoes?" - that leaves Big Brother and Little Brother puzzled for a while.
"Noooo!"
"See, that's why the doctors have come up with food that runs through a tube and makes you stronger."

Explaining total parenteral nutrition to toddlers is a piece of cake.

Dull thud

2012-01-10T08:22:00.000+01:00

I had just lifted Little Brother on the toilet, when I heard Kenji approaching. He mumbled something about making way, so I grabbed Little Brother who had no choice but to hold his pee. Then there was a dull thud: instinctively I ran across the hallway, briskly put Little Brother on the floor with this pants still down, and witnessed how Kenji had fallen on hands and knees. He wanted to run for the toilet but his weak limbs couldn't carry him anymore.

My heart broke into a thousand pieces.

Little Brother was forced to listen to Kenji vomiting loudly. Forget about an escape route; I couldn't protect my boy from seeing his papa's weakness, in spite of my instincts telling me this was hurtful to Little Brother. The culmination of being trapped. My fully grown man fell down - in so many ways.

I wanted Little Brother out of the house as soon as possible, so I left without knowing what was going to happen to Kenji. A year with cancer makes one do things like that, easily. We picked Big Brother up from preschool and by the time we arrived home, Kenji could utter: "Hospitalization at three o'clock."

At the hospital, I had to push Kenji in a wheelchair. His entrance made quite the impression.

Mirror Monday #34

2012-01-09T11:01:00.003+01:00

Last weekend I bumped into my yoga teacher. I hadn't seen her in ages, because the last time I went to class was - well, I don't even remember when. And even though I knew she was well aware of my circumstances, I apologized for not attending classes anymore.
So in honor of our meeting, I finally rolled out my mat yesterday. And again early this morning. Meditating before bed and a quick round of yoga upon waking. On some days it does work out just the way I like it!

If only, if only, if only... I could say that about the rotten circumstances too. Because from what I'm seeing, there isn't much to like at all.

The brothers are back

2012-01-08T19:21:00.001+01:00

LB: "It's fun, Mater said."
BB: "Yes, Sally said, not there, there aren't any flowers. Then I'm going home."
LB: "Wé go outside."
BB: "I'm going this way. Ah, maybe we should look up in the phone book if there is a spare tire. What's going on here? Well, said Sally, I cannot drive on my rear wheel, because that is still missing."
LB: "I cán drive."
BB: "I'm going fa-hast!"
LB: "I need to go a bit fast too. Careful, right Mater?"
BB: "I can carry áll tires by myself, because I'm Scoop. I'm everybody's boss."
LB: "I'm going to the fire-brigade."
BB: "Then you need to dump those cars first, otherwise that won't work."

And at the word 'dump' the brothers get engaged in a huge fight over the dump truck that is filled to the brim with cars. I sense trouble, stop taking notes and run over. Scream "No-hooo!" - it's too late. In slow motion I witness the nastiest bite ever in brotherly fighting history: Big Brother's teeth marks show up on Little Brother's nose and upper lip.
After a weekend at their grandparents, the boys seem to have returned as two perfect little angels. Playing the cutest invented stories in full harmony for hours on end. How reassuring to see that Big Brother and Little Brother are still their good old selves...

On illusions and resilience

2012-01-07T13:15:00.001+01:00

"Ciao bello!"
"Ciao bella!"
We wished each other goodnight by the living room door, as we weren't going to sleep together. Kenji on the couch, me in the double bed with the missing pillow.

Acceptance brought deep surrender. I held Kenji in my arms and we cried - maybe because the boys were on a safe distance from papa's and mama's tears, or maybe because grief had become so overwhelming that we couldn't outrun it any longer. We decided to give sleeping apart a shot, something we have never done since we live under one roof. Regardless the threat of the re-hospitalization, we saw how rest was more important than waking up next to each other.

Seeing what is right in front of me has a strangely calming effect on me. I ab-so-lu-te-ly don't like what I see, yet I'm not turning my head away. I'm opening my eyes instead of letting my mind function as a magical box of illusions, in a superficial effort to cope with the present. There's no point in wishing that Kenji is someone he is not. Because he simply isn't. To be free from these illusions all of a sudden provides me with the resilience I was so desperately looking for.

At this point, seeing is accepting. My shoulders lower a bit - except where fear and anger were lying, now dwells the pain of grief.

It is time [2]

2012-01-06T20:29:00.002+01:00

It is time to look each other in the eye.
To accept.
To slam a fist on the table, inhale and fight.

We lie awake in the middle of the night. Nuzzled as closely to one another as possible. My hand on Kenji's head, the tip of my nose against his. I look into
his sad eyes. He sees mine watering up.

No words are necessary: in opening our eyes, we accept the impossibility of the situation. The vicious circle that has become a vicious downward spiral. Kenji weakening by the day. Our family that gets dragged down with him. And I promise Kenji that I will do all that lies in my power to find a bit of breath for him - and us.

There's nothing left but to slam my fist on the doctor's table, just as I did when Kenji was discharged last Monday. To tell each doctor that I can get my hands on that Kenji's condition is truly worse than it appears. Screaming for help at this point, is doing my utmost best. Even when it means waving the boys good-bye for a sudden sleepover, or considering having to kiss Kenji farewell in a few days. Fighting is never easy.

[Edit] I'm not often sharing medical details here, but we might be facing a re-hospitalization in a day or in a couple of days. Who knows... Please don't misread my last lines, I was simply mentioning how much we all hope that Kenji will regain some of his strength to continue his fight from home!

Trump card

2012-01-05T19:39:00.005+01:00

Upon waking I felt a pang in my stomach: facing reality always hurts like hell. Especially since I dined out with my cousin the night before and truly had been able to enjoy my meal ánd a nice bottle of Rioja. Saying good-bye was much more harder than I had expected - having her love so near, I realized how much I'd miss her once she would be back down under.

So it became one of those days. Where I put one foot in front of the other with my teeth clenched and my eyes half closed. Where I went through the motions but wanted to hide under the blankets and grieve.

To keep me on my toes, Little Brother picked today to rebel. He is a stubborn little fellow and knows darn well when he's breaking the rules. And he did, with a naughty smile, time after time again. My warnings and reprimands didn't seem to impress him - so I pulled my trump card. "Listen now, or there won't be any Cars TV time before dinner." Surprisingly enough, Little Brother's ears still refused duty.

O-oh. Big Brother pleaded Little Brother's case and looked at me with his big brown Bambi eyes: "Please let him sit on the couch mama and watch Cars with me mama, please!" I was ready to give in, if Kenji hadn't spoke first. "Stick to your promises Roos, or he'll never learn." Right. Right!
Parenting together - even it's for one crucial line a day only - makes this life a bit more bearable. Despite his dreadful condition, Kenji still is by far the best dad in the world.

It is time

2012-01-04T14:14:00.007+01:00

It is time to speak up.
To confess.
To sigh deeply, inhale, and act.

My big cousin is in town. Sounds quite ordinary, except she lives in New Zealand and I haven't seen her for years. A chance of a lifetime, considering that she
flew especially to Amsterdam to come visit me in this barren situation. Yet meeting her means putting myself first - and leaving Kenji behind.

It is time to speak up. To confess to Kenji I cannot do it all. To sigh deeply, inhale, and act. Like my life depends on it. And so I introduced my beloved cousin to my precious boys in the botanical garden this morning. Together we spotted the first snowdrops, with their buds still closed but ready to sprout.

Then and there I remembered my teacher's words when she wrote about roses: "This ceaseless bloom is what makes life beautiful even in the harshest of circumstances." The bursting bud of the snowdrop showed me the first vital sign of life after frost. Maybe letting myself melt in order to bloom isn't so bad after all.

Vicious circle

2012-01-03T19:44:00.005+01:00

I pack and unpack.
My sleepover bag and the one of the boys.
Kenji's hospital bag.
We are all home again.

I stock and reorganise.
The kitchen cabinet gets refilled with another two bags of medications.
The utility room now stores 90 bottles of additional feeding.
The linen cupboard had to be set up as medical area as well, for insulin syringes and a glucose meter.

Kenji returned home with steroid-induced diabetes. A kind of diabetes where oral meds won't do the trick and insulin shots are his only option. The vicious circle he is in, is staggering: the additional feeding is highly necessary but contains loads of bad sugars, which in turn demands a lot of insulin during the day.

I wish I could pass on every sugarfree crumb of 'ease' to him.

Mirror Monday #33

2012-01-02T11:35:00.000+01:00

I hope you all had a wonderful New Years weekend. Wishing you a light-filled 2012!

No matter if it's 2011 or 2012, Mondays are always hectic. I'm having a quick espresso and am off to the hospital in minutes. For those of you who can, do take an easy start of the year. My own wish for 2012? More ease - then a dash of easy will hopefully follow.

Reflection

2012-01-01T16:19:00.000+01:00

The hospital window turned out to be a magic mirror. Two beds squeezed tightly in a single room. Kenji's feet hidden under the blankets, mine on top. A bottle of fake champagne and paper cups. My handbag. The empty bulletin board.
An extraordinary hospital entourage surrounded by fireworks in the distance.

The boys were more than happy to stay at their grandparents. The nurses were more than happy to put an extra bed in Kenji's room. Whatever New Years Eve was going to bring, I knew a midnight kiss was secured.
I didn't have high hopes for the evening though. Kenji was totally fed up with feeling crappy, which made celebrating definitely not the most obvious way to kill the hours. Still I was determined to watch the New Years Eve lottery draw on Kenji's bedside TV. With the volume maxed out and the headphones in between us, Kenji mocked me every time our ticket didn't have a winning number. And by the time a nurse came in with a real bottle of champagne for us to pop at midnight, we felt at ease.

I kissed my guy. And he kissed me! We softly said "Happy New Year", fully aware of the finer nuances.
And the ultimate advantage of the oncology floor? Watching the fireworks over Amsterdam. It had never been more beautiful.

18+347 Days

2011-12-31T08:22:00.008+01:00

2011 brought us 18 days of ignorance.
And 347 days of cancer.

No matter how many times I reassured you (or myself) that I was doing fine,
it was bad. In-de-scri-ba-bly bad. This year I was forced to hop on the roller coaster and was forbidden to step out.

This year I met fear. Fear so big that my heart beated in my throat and simultaneously prevented me from breathing. Fear that pinched off my brains and froze my limbs. And not once, no, innumerable times.

This year I befriended grief. Grief I'd only known from childhood and that I'd confused with fear all these years. Not only was it O.K. to grieve, it turned out to be essential to recognize my needs when it came to grieving. Crying to inhale clean air.

This year I saw joy. Joy appeared to be everywhere around me, on the most tiny and insignificant places I never thought I would find it. Opening my eyes to joy allowed me to count my blessings every single day.

This year I found a teacher. A teacher in Zen Buddhism who walked with me and took me in. Who planted me a rose garden and said services for Kenji in her serene Zen garden.

This year I held on to love. Love was my motor and motive. My love for Kenji and the boys grew vaster and vaster, but also my love for life. Love became a powerful weapon in my struggle against self-criticism and loneliness. I opened the door and welcomed you in.

In hindsight it feels like 2011 contained only extreme opposites. "Light and darkness are a pair like the foot behind and the foot before in walking. Each thing has its own intrinsic value and is related to everything else in function and position." (The Identity of Relative and Absolute, 8th century Zen poem)

Wishing you all a light-filled 2012!

Mesenchymal stem cells

2011-12-30T15:57:00.002+01:00

"We are alone, the two of us. Do you feel it too?" I sit on Kenji's bed and nod. It's only a couple of minutes before the mesenchymal stem cells will arrive and his hospital room has become a alienating vacuum. I mumble something on Zen and living without expectations, but there's no time for talking.

Nurses and doctors are gathering and once again a holy stem cell bag is brought in. After the stem cell bag is attached to Kenji's PICC-line, the nurse manager holds it up in the air with one hand to let the cells find their way down and strokes Kenji's arm with the other. I am moved by her gesture: combining medical and emotional needs in one.
The contents of the small bag quickly seem to vanish into nowhere and the solemn silence gets broken by a bad joke. Judging by the volume of everyone's laughter, we're all relieved the procedure is over.

After October 15th we assumed we were completely done with stem cells; two and a half months later they had to be supplied again... Letting go of expectations once more proves to be essential - yet I so wasn't looking for a Zen lesson in the hospital yesterday. Kenji and I are together alone in this stupid fight.

Jumping

2011-12-29T09:14:00.000+01:00

One afternoon we were given. To make another important decision regarding stem cells.

The hematologist mentioned how young 'neutral' stem cells could possibly reset the earlier transplanted ones that are attacking Kenji's bowels.

Another stem cell transplantation.
Another medical experiment.

The hematologist told us not to get our hopes up. Treatment would probably not be available before the end of the year. However the Utrecht hospital unexpectedly gave the green light: mesenchymal stem cells are on their way by express delivery.

Kenji will be jumping in a few hours - again without a parachute.

Little Brother's view

2011-12-28T08:26:00.002+01:00

"I don't want papa to be in the world."

In the world.
Floating in the big great unknown.
Far away from the papa he used to be.
Somewhere in the distance.

When after months on end Kenji's medication against acute graft versus host disease still isn't working, he is adrift. Foreign cells attacked Kenji's body in October and keep on firing their ammunition ever since. We are slowly getting used to the off and on hospitalizations - Kenji hasn't even been home with us for a full week after his grand exit in November.
After the chemo train and the transplantation train, another enemy jumped aboard. A cunning disease that persistently proves to be steroid resistant, which forces us to walk the medical experimental way again.

"I want papa to be home."

In retrospect

2011-12-27T09:02:00.003+01:00

And in the end I did forget all about Christmas. Not in a negative way, because I did surprise the boys with a decent celebratory breakfast, where Big Brother's flickering Christmas arrangement took an honorable position at the usual spot of papa's plate. Before serving the stollen (or the remains of it) I texted Kenji a picture of our table: showing we were doing our best, just as he was doing his.

It were simply dates. A chance for the hospital caterers and nursing staff to put on a Santa hat and serve chocolates and bags of IV meds with an extra smile and pat on the back.

In retrospect? A Christmas to remember. In my darkest hours the littlest signs of unexpected love turned into comforting blessings. A friend shared how her two-year-old had spotted my weekly picture on her mother's computer and had exclaimed: "Look mama, it's mama Roos!". And how she kept saying "mama Roos" upon seeing women with my type of hair colour and dark-rimmed glasses. It broke my heart wide open: the girl saw right through me.
I am a mother of two, unasked and unawaited of 'three' these days, and there is love for so many more.

Mirror Monday # 32 [Christmas edition]

2011-12-26T13:10:00.001+01:00

My eyes hurt from crying. I had another portion of tears yesterday, and wondered why these two nights alone differed from the other numerous nights Kenji has been hospitalized the past year. It was the 'everybody-is-with-their-loved-one(s)-at-Christmas-except-me' thing I guess. The emphasis on harmony and peace while being ruthlessly separated. And the hidden fear of maybe not having Kenji with me next Christmas once and for all.

Instead of a close-up, a portrait with golden rays from the convex mirror in our hallway. A feeble effort to surround my face with a Christmassy touch.

On 'stollen' and tears

2011-12-25T13:10:00.004+01:00

I grew up in Arnhem, in an area where I was the only child among mainly elderly people. Also our neighbors were in their eighties, two German Jews who had survived the Holocaust with their daughter (writing this piece I stumbled upon her amazing survivor story here), and loved having a young girl living next door. Came Christmas time, they always gave us some traditional German food including a stollen.

The taste of my childhood was long gone, till I entered Kenji's family. Kenji's father is from Luxemburg and happens to be very fond of stollen too. Last year when we visited them in Paris around Christmas time, he had found a Parisian shop specialized in German food and very proudly presented us a proper stollen.
This week Kenji's father handed me a blue box with an "Echter Dresdner Christstollen" and I had trouble hiding my tears. Such a sweet reminder of our last carefree family time together, and how nice of him to order stollen all the way from Germany for the entire family.

On Christmas Eve 2011 I was home alone - only accompanied by two feverish little boys. I cried my eyes out. And continued to cry until all my mascara was gone and the tissue box was empty. I was really about to dismantle the tree and fling all Christmas decorations on the floor... Not the smartest plan, I told myself. So I decided to open the blue box before Christmas breakfast. Never before was a stollen so soothing.

Clinging to the light

2011-12-24T13:13:00.002+01:00

I had been warned. At the preschool Christmas brunch Big Brother's teacher approached me with a worried look: she felt it as her duty to inform me that five children were ill. All having a nasty flu and one of them, Big Brother's favourite playmate, even had to be admitted in the hospital for pneumonia.
How relieved the teacher was to hear that Kenji wasn't at home - and how concerned and focused I was on the slightest cough coming from my boys.

Hand in hand with the boy's fever, came the coughing fits. And it's the coughing that prevents them from visiting Kenji and that obliges me to wear the damn mouth mask again. In an hour I'll be on my way to the hospital and I already know I cannot kiss my love.

I cling to all glimpses of light in order to let my own light shine, at home and in the hospital. So thank you S. for rushing over last night and having a glass of wine with me; for your heartfelt comments and emails; for keeping your candles burning; and for staying with me and the boys, and with Kenji, for the holidays.

In return I spread some light by showing you Big Brother's pride and joy [click on picture to enlarge]: his first uber glitsy Christmas arrangement, topped with a plastic flickering tealight. Whoever looks at it, smiles!

Christmas preparations [edit: or forget all about it?]

2011-12-23T14:57:00.007+01:00

The fridge is filled. The kitchen cupboards are stocked.
The house is decorated, with preschool crafts making it totally Christmassy.
My bed is empty.
There are days when life cannot be simpler than that.

Kenji was supposed to be discharged today, when he suddenly phoned me in the middle of the night. I always sleep with my phone next to my bed - even though it seldom rings. But it did and I instantly knew he wasn't coming home. Fifteen minutes later my night shift had started in all its intensity: Big Brother had trouble breathing, coughed like crazy and kept wetting his bed because of his fever. He was lost.
This morning Kenji and I talked over the phone again. Little Brother overheard some of the conversation and burst out in tears. I actually had to end the call because he kept throwing himself off the couch and crawled all over me, crying. His grief turned into panic - and there another of my boys was lost.

Now I'm having trouble not to lose it. Kenji's doctors are deliberating over his case as we speak. None of their theories of the past few days have made Kenji feel any better. And we miss each other so much.

[Edit] The final verdict is bad: Kenji's acute graft versus host disease struck up again and he cannot leave for days or longer... Both boys have a fever now and it seems like they won't recover soon: forget about celebrating Christmas in the hospital. I'm all for safety regarding Kenji's health - but my heart is breaking.

Pay attention

2011-12-22T12:24:00.000+01:00

One 'advantage' of Kenji's absence is having the boys in bed with me in the morning. Some sort of mini lie-in and another portion of their scent to inhale. The boys nestle up next to me: Big Brother always wants to lie on papa's place, Little Brother prefers my pillow. I get a rough massage upon waking by four little feet kicking me without interruption - that's part of the game though.

"I don't want papa to be ill." Little Brother speaks for the three of us. No matter how nice the quality time, we all know what would be so much nicer...
"Papa has to pay good attention." I instantly get what my little boy means. "I don't want cancer to get through my mouth", he mumbles, chewing on the hat of his cuddle gnome.

The boys are given the strictest instructions to cover their mouths when they sneeze or cough. Preventing infectious bacteria from spreading is of the utmost importance in our household. I keep telling them how they have to pay attention that other people won't get ill from snot that's flying around. And now Little Brother's mind is having trouble combining the pieces.

Little Brother speaks so fluently for his age. All I need to do is listen.

My boys

2011-12-21T19:54:00.000+01:00

My boys are my all.

A tram ride where Big Brother and Little Brother are invited to the conductor's cabin. Big Brother goes wild!

A unexpected pleasant visit to the Hema. Big Brother is just so cheerful about
a simple package of batteries for the Brio locomotive at home, Little Brother proudly holds his new cardigan. To top that off, I lift the no-coffee-no-sugar-ban (don't worry, I know my needs these days!) and we have the best of times in the Hema restaurant. It's my turn to go wild: I treat myself to a tompouce. My childhood favourite and instant comfort food.

A waterfall of happy high-toned voices when I return home. Their bright eyes sure lift my mood after some exhausting hours at the hospital. When I rub their little bodies with Weleda Baby lotion before they go to sleep, my hands are spreading my love. From head to toe I cover my boys with tenderness - and make sure to press my nose against their freshly bathed skins and hairs. That smell outshines any tompouce.

Full house

2011-12-20T08:21:00.000+01:00

Minutes in the ER take longer.
Hours in the ER take longer.
It's a prison inside the safe walls of the hospital.

I stare at the kids toothpaste's stains on my jeans, proof of my life as a mom, while I listen to incoming ambulances and screaming voices. I had just put the boys to bed when all of a sudden a call to the emergency room needed to be made. Back to being Mrs. Handhold.

I wait and my ears are scanning the footsteps. One by one they are passing by. To the trembling junkies, the shrieking babies and the moaning men. Amidst the noises Kenji is silent. The noises turn into rumours whispering 'the hospital is chock-full'. No bed on whatever floor is to be found for Kenji, the transplantation patient with a fever under immunosuppressants.

I wait in silence and watch the day turn into night.

Five hours later the prison gates open. The nursing staff of the sixth floor has cleared a bed by exception.

Mirror Monday #32

2011-12-19T11:08:00.000+01:00

Here's the thing: I never imagined I would be doing it all on my own. Being kind of a single mom of 'three', living with the daily risk of becoming an actual single mom of two. Caring for the entire household ánd providing for our family.
To me that vision has long been unimaginable. More something that belonged on the Oprah show: American bright and busy moms who have two jobs, multiple kids and still manage to write books. I know they are out there and soon I'm going to be one of them. Well, perhaps not exactly alike, but you get the gest of it...

I simply never pictured myself as the strong point of this family. Stupid maybe? Now I'll be the spindle.

Take it slow

2011-12-18T15:43:00.002+01:00

There's no need for procrastinating. There's no need for panicking either.
Yet I do both. Maybe it's the lack of caffeine - if only I could pop in an appealing shiny golden or deep purple little Nespresso capsule - or the splitting withdrawal headache that makes my mind slacky.

In less than three months I will have to add a new job to my list: a Real Job. No more ironic metaphors when it comes to describing my life as full time stay-at-home mom and caregiver. My savings are running dry, which implies miraculously digging up some billable hours in the 24 that are given each day to get back to business.
Post-transplantation life has painfully showed us how slowly Kenji is recovering. Actually 'recovering' is too strong of a word. Slowly being would be better. How tempting it is to stay in the moment, but with my eyes squeezed tight. To ignore the future that demands só much more of me: bringing in a pay check that covers my share and perhaps part of Kenji's share too.

Neither the care that Kenji needs and will continue to need, nor the boy's demanding double (pre)school schedule, nor the break I desperately long for and know isn't coming, should prevent me from opening my eyes. From seeing that there's no valid reason to get ahead of my panic, instead inhale and take it slow.
Slowly being for two.

Reboot

2011-12-17T14:35:00.008+01:00

When three cups of caffeinated coffee in a row won't provide a boost anymore; when facing wet coats and soaked pairs of jeans after a rain shower is making you burst into tears; when you're nagging about the benefits of yoga to others but haven't been practicing yourself for months, it's time for a reboot.

# ctrl
Control my daily moment for practicing Zen. Sitting is the only thing which keeps me sane, but I often postpone it to the end of the day when I'm só incredibly tired that I can't seem to make it for a decent minute.
# alt
Alter the way I spend the little spare time that I have, even though I'm hardly ever on my own. Passive screen time has to make way for 'me-things' like yoga, to keep me awake instead of slowing me down.
# del
Delete caffeine and sugar in its entirety again. December might not be the most obvious (or easiest) month to do it, but why hide behind a calendar to do what's right for your body?

And I won't start tomorrow - I'm starting today.

White knight

2011-12-16T20:04:00.005+01:00

Kenji and I didn't need to give it much thought this year: we decided to skip Christmas all together. Who needs lavish family dinners when graft versus host disease is messing up one's bowels? Or fancies wine or champagne when post-transplantation life rules out alcohol? Yet for the boys we obviously go through the motions. Happily.

After putting up the tree, it was time to bake. (Remember how Little Brother wished for cookies?) And no, I'm not much of a baker, so I was relieved to find a prefab Christmas cookie mix on the shelves. I assembled all the ingredients - which meant cutting open one bag - and was ready to add the requested amount of water. Except my weary mind had mixed up 'ml' and 'cl' and in one big splash I ended up with cookie soup instead of dough. Kneading with my sweet gooey hands was pointless.

And there he was: my knight. Kenji stepped in, grabbed the flour and added a whole lot to my liquid mess. Ever since he's home from the hospital he cannot do much, or actually nothing at all... But with this heroic gesture he saved the day. We ended up with twice as much dough, enough to make two batches of cookies ánd to save some leftovers for Little Brother and Big Brother to play with.
High five! My guy and I still deliver some good old-fashioned teamwork.

Pores

2011-12-15T20:08:00.001+01:00

Looking at the calender, the year is drawing to an end. Moreover we're heading to eleven months of leukemia; in over a month it will be ALL's first anniversary. Hurray...
In a year's time cancer has permeated through each and every of our pores: subconsciously with the boys, all the more consciously with Kenji and myself.

In the store Big Brother noticed peppermint mints in a cellophane wrapping. "Pills for papa!", he exclaimed. How could he have known the difference, because they look exactly alike. Every breakfast he sees his papa swallowing nine pills in all sorts of shapes and colors. Pills that look like candy - poisonous pills we have strongly warned the boys against. Cancer has been present in their little lives for so long that it's no wonder that Big Brother stumbles upon 'pills' outside the pharmacy.

In the hospital I noticed a new publication on leukemia, aimed to offer support right after diagnosis. Would we have benefited from such a book a year ago, I wondered. I flipped through and concluded: not. Back then we read all the information on acute lymphoblastic leukemia we could get our hands on and we have talked to so many specialists since. Yet no medical article nor haematology professor mentioned the vast and perpetual impact that cancer would be having in our day-to-day life.

Sometimes it seems that only now our eyes are opened.

I've got my love

2011-12-14T13:44:00.005+01:00

Big Brother and Little Brother are staying at their grandparents' house, so no dirty diapers or urgent demands for peanut butter sandwiches to wake us first thing in the morning. Too bad we couldn't lie-in: even though Kenji's pills kept nicely silent, they still managed to kick us out of bed.
Strangely enough the post-transplantation meds have taken over the peace and regularity of the boys' schedule. What an ironic concurrence of circumstances.

After breakfast utmost exhaustion is totally clouding my view. Gone are my plans of undisturbed cleaning, doing some yoga, taking stuff to the basement, crafting another doll for our 'nature tray' (a smaller version of a Waldorf season table), reading my Shambala Sun magazine that has been laying around for weeks and so on.
I cannot move a muscle - so I nestle myself on the couch with Kenji's blanket. I feel slightly guilty for taking it, but Kenji encourages me to come closer: "You'll keep me warm". That immediately reminds me of Big Brother's favourite Christmas song, Dean Martin's I've Got My Love To Keep Me Warm, that he adorably sings along phonetically.

A nap on Kenji's lap changes everything. Waking up and seeing his eyes looking into mine is heavenly. My anonymous bagel angel provides me with an excellent sustainable salmon and cream cheese bagel for lunch and I'm good to go! Although with my late start I suspect none of my plans will get finished today...

Perspective

2011-12-13T14:57:00.003+01:00

The boys were already fast asleep when I tripped outside. Shivering I found the same red car on the same spot near the pavement where I entered it with Kenji last Thursday night. "If we drive you to the hospital, we also take you home", my friend joked. She handed me his bag, another bag with medications and the bill - the standard combination upon discharge these days.

We sat on the couch and I couldn't take my eyes off him.

A full week in the hospital, with a disastrous interval, has left us shattered. "I am still here", Kenji mumbled. Those words were again so well put and had such an impact on me. I wanted to stroke his hand, but Kenji pulled back in pain: the several vain attempts to draw blood had left his hand bruised. Part of him was sitting next to me, but the greater part was sort of still in the hospital bed.

A revised medicine cocktail should do the trick for at least a week - however after everything that has happened, it is not self-evident to lay back and relax. To fully trust that we are given a new perspective, an opening where the clear blue sky is showing through.
Our heart rate will need to slow down over time and then our breath will come along.

Mirror Monday #31

2011-12-12T13:18:00.001+01:00

It took me more than just one good night's sleep to recover from the three hours of sleep following the emergency hospital visit. In fact, I still hadn't recovered when last night right before bed Big Brother surprised me with a sudden attack of croup. Luckily he was quite easy to calm down and found his way back to bed soon.
While I listened to Big Brother 'barking', there were some obligated phone calls to make. Any viral infection could possibly harm Kenji, so I spoke to several doctors and nurses before I could call it a day. And this morning my job as troubleshooter continued almost uninterruptedly on another really hectic Monday. I'm off to close my eyes for a few minutes...

What better way to keep my throat comfortable than with this nice crocheted scarf from Vicarno's mama?!

Cold coffee

2011-12-11T12:54:00.002+01:00

Before putting down my laptop on the kitchen table, I stumble upon another half empty cup of coffee. Grown cold of course. Without hesitating I swallow the last bit: this black one contained caffeine and I'm in need of my rationed portion.

Is there ever time to sit down and enjoy a freshly made cup of coffee? Or, do I ever make time? In all honesty I have to admit that the latter is often the case.

Obviously this isn't just about a cup of cold coffee. It's about putting myself first, even if it's for a really short time span. To explain to the boys that I need a minute, which means they have to wait (although I skillfully assemble broken cars or Duplo vehicles with one hand, holding my cappuccino in the other).
Yet I feel so bad for Big Brother and Little Brother in these turbulent hospital days, that I don't want to deprive them of anything. As a result I go on and on - both at home and in the hospital - without a break whatsoever.

Dealing with the 'guilt' of taking a few minutes off isn't easy for me. "Guilt is your fabrication", my Zen-teacher wrote months ago. And so I'll chew on that one as if it was handed to me right now - like a cookie to dunk in my coffee.

All I want for Christmas is you

2011-12-10T19:24:00.001+01:00

I'm doing O.K.. Really.

Hard to believe? Let me give you some proof. From 1987 on I've raised a huge aversion to Christmas. That year my father died, five days before Christmas Day. Since then my mother put on a brave face and desperately tried to be festive. Yet the moment the tree entered our house, I always bursted into tears. And wanted to run.
Nevertheless I was determined to continue the Christmas celebrations. One year, I told myself, one day the time will come that I will be able to genuinely enjoy putting up the tree. And so I bought one in my student room - and cried. Kenji and I had a tree in our first apartment, where the tears flowed even harder now that I had a shoulder to cry on. Brace yourself, Christmas is coming.

At Ingrid's pop-up shop I found the loveliest vintage Christmas decorations. When I returned home with my treasures, the boys had already assembled this year's tree: a 'bacteria free' fake one. The smell of pine was absent, and so were my tears...
Big Brother turned out to be a natural talent when it came to decorating. Very precise and very dedicated: I looked at him and truly saw myself. I lifted Little Brother who pointed out branch after branch for his crafted paper decorations. Dancing on Maria Carey with my two angels I counted my blessings like never before.

Unbelievable how much 2011 has already brought me. Today I was a happy mama.

Up for grabs

2011-12-09T08:16:00.000+01:00

At 2 o'clock this morning I'm waiting for a cab outside the emergency room.
I look at the moon that is almost full. Somehow the moon is very significant: its beauty is the only thing that lights my day.

Yesterday afternoon I welcomed a very weak husband to our home and secretly wondered (or worried) how many days (or hours) it would last.
I made the first phone call to the hospital right after dinner. The doctor taught me some tricks for Kenji to hopefully make it through at least one night at home. My second phone call? Only hours later, when I had not choice but to announce our visit to the emergency room. A night with Kenji by my side was up for grabs and brutally taken.

It took four painful attempts to get an IV drip needle into his ruined veins, which made me sick to my stomach. After the tormenting emergency room Kenji was transported to the oncology ward - and put in the exact same room where he had spend six weeks on end after the transplantation. I kicked the hated green door with my boot as vigorously as I could.

Deep grief has come over us. Grief at its highest peak. Grief that opened our eyes: Kenji isn't doing well, nor has he ever been since he was diagnosed. We were trying so hard to see something that wasn't there.

Little Italy

2011-12-08T08:07:00.000+01:00

One of my blog readers is living in Florence - how enviable - and asked if she could send me something "from the city where you and Kenji met". Well of course! The Poste Italiana must for the first time ever have been working properly, because within a week an amazing surprise box with yummy gifts arrived.
All bought in the Esselunga, our favourite Italian supermarket. (For those of you who don't know us 'before cancer', do read this kissing story of our last Tuscan holiday.) The 'Essa' is pretty damn special so I was ecstatic to find the Esselunga Christmas magazine in the box as well.

Watching Italian food commercials and flipping through local supermarket flyers is considered heaven by both Kenji and myself. All the more reason to handle this Esselunga relic with the utmost care and stretch its contents into eternity.

The magazine ads and some meters of artist tape turned our bare utility into a kissing room: a little bit of 'Essa' in our own home.

Still

2011-12-07T13:08:00.000+01:00

As soon as Kenji was gone, it was like he had never been home at all. The bed wetting, the fighting and competitiveness, the noctural inconsolable cries and the mealtime drama's: they all popped up so easily that I wondered whether they had ever been gone for good.
Being torn between a wounded Kenji and two raging boys for yet another period of hospitalization. Been there, done that.

With this week's Rohatsu (an intensive meditation retreat) in mind, I aimed to find more time to practice. To join my sensei and fellow Zen practitioners all over the world in silence. Yet the duality of the situation and the gravity of the demands on both sides ate away my good intentions. On waking this morning I pondered on the word 'silence': if I couldn't seek out silence, at least I could be still. I could be still and look within.

And when I honestly faced my inner self, I saw that my reactions were so similar to those of the boys. I too had been angry and irritable ever since Kenji was forced to leave. Dumbfounded and scared. How we all were the same!
I asked Big Brother what he would pick if he could have anything in the whole wide world. "A happy mama", he answered in a split second. Little Brother added: "For me? Cookies, right!?" We kissed and made up.

Untenable

2011-12-06T11:00:00.000+01:00

After the sheer joy and excitement of opening his Saint Nicholas' presents, Big Brother cried. And cried. And kept on crying, for hours on end. He nearly (or quite frankly, let's skip 'nearly') drove us crazy. Little Brother was upset too, simply because he wanted Big Brother to be happy. He urged me to go find his brother and when I found Big Brother on his bed, he was curled up like a little
ball of anger.

I softly stroked his back to calm him down and Big Brother confided his frustrations to me. "My playing isn't working. Papa needs to go. To the bedroom. Or gone." My gut had already told me the situation was untenable - for the benefit of the whole family something had to happen.
Then Kenji got seriously ill on Sunday night. An emergency hospitalization was set up and all of a sudden nothing was untenable anymore. We were left with a broken family, again.

I pushed Kenji's hospital bed through the hallways and I saw people staring. I remembered the time a new patient was brought in and Kenji and I exchanged the same kind of looks: that guy is doing really bad. Overnight my guy has become 'that guy'.

Mirror Monday #30

2011-12-05T09:30:00.000+01:00

A quick and dirty edition of Mirror Monday this week: after a worrisome weekend, I'm about to accompany Kenji to the hospital. How right I was to save yesterday's pictures in the end...

The early morning portrait leaves nothing to hide.

't Heerlijk Ochtendje [2]

2011-12-04T13:55:00.000+01:00

Never mind the traditional 'Pakjesavond' [Present's Night], in our home Saint Nicholas prefers to arrive at dawn. Unwrapping presents and eating as many 'pepernoten' as you can before breakfast, shoving in a quick slice of bread and play non-stop for the rest of the day. Excellent.
We left the downstairs neighbors a note, saying that Saint Nicholas was arriving this Sunday. Two bouncy boys at seven o'clock isn't everybody's ideal start of the day... And how elated Big Brother and Little Brother were: 'pepernoten' as far as their little eyes could see as well as cars - ánd Cars!

Sorting through this morning's pictures made me cringe. I instantly wanted to press delete whenever Kenji or myself popped up. The pictures didn't bother to hide any flaws: the both of us looked terrible. But then I realized how Kenji's presence at Saint Nicholas' morning shouldn't be taken for granted, just as from now on nothing is certain anymore. Neither should I erase my appearance, marked by fatigue and worry.

Seeing my brave mama smile, on the edge of breaking, absolutely hurts. I didn't put on a fake smile for the boys, yet with all my powers I could only pull off such a thin and fragile one. I guess sadness is given the upper hand by my December spirit.

Let it be

2011-12-03T16:53:00.000+01:00

Letting Kenji be might appear to be the hardest Zen-lesson of all. The muscles
in my arms and legs hurt from running from daybreak to sunset and beyond. From fetching drinks, preparing slightly different meals for one, filling hot water bottles and washing and cleaning whatever and whenever time lets me. My mind spins from remembering medication schedules and counting pills, but most of all from pondering over something which would cheer Kenji up.

It's no use.

Wanting to help someone this weak is not working, neither is trying to make someone so utterly sad a bit happier. Nothing separates me from the boys here: the three of us deeply desire the same thing. A strong papa. A smiling Kenji.

There is no changing, there is no saving: I have to let him be.

I Remi, you Remi, he/she/it Remis

2011-12-02T08:15:00.000+01:00

Does anyone know that to Remi is a proper verb? Well almost, since a dear friend of mine invented it years ago. To Remi means to feel alone, as in utterly lonesome. Like the protagonist in "Sans Famille", Hector Malot's novel.
I Remid in waves, back and forth, but the next wave was never far. I didn't see how the waves could maybe wash my loneliness away; I only worried when the next wave would come rolling in. Because the feeling, deeply anchored in my core, had accompanied me ever since I was a child and learned the meaning of the word 'alone'.

My Zen-teacher said to me: "It only appears on the surface of things that we are alone. We are all one thing." How I wanted to believe those words! So I tried chewing on it, but ended up grinding my teeth: the nasty little voice inside my head kept telling me I was just as alone as before. As approaching the words with my mind was useless, my heart was yet too tightly closed to let them in.

Then came the roses. One after another. And another. And anóther. Each stranger with a rose in his or her hand spoke directly to my heart. Not in a corny or obligated way, but expressing the purest love.
Bells were set ringing: it has dawned on me how to Remi just won't stand anymore. If so many people from all over the world have reached out to me and my family, how can I ever seriously believe I'm alone again?

The perfect gift

2011-12-01T14:33:00.000+01:00

Kenji and Big Brother are a match made in heaven. They are so much alike though, that whenever Kenji is feeling bad, Big Brother gets uncomfortable too. And lately Kenji has had very few bright spots, to put it mildly... Much to our regret our eldest boy suffers visibly from having his ill papa around.

With Saint Nicholas in mind, Kenji confides his plan to me. He might not be able to fulfill Big Brother's desires when it comes to playing and frolicking with him, but he can whisper his boy's biggest wish in my ear. I'm the saint, remember? So Kenji orders a miniature Lightning McQueen, Big Brother's favorite Cars character.
After searching for weeks (really, how hard can it be to buy thé most popular toy car among three-year olds?), I had to tell Kenji I his plan was a no go - until I finally spotted one this morning. I tricked Little Brother in looking the other way, hurried to the cash register and texted Kenji the minute I stood outside again. He instantly replied and I could sense his enthusiasm from a distance.

When Kenji peeked inside the plastic bag I saw such a priceless smile on this face! At this point I don't know who is going to be happier with Lightning McQueen in a few days, father or son.

Out!

2011-11-30T13:25:00.000+01:00

On the morning the boys found something sweet from Saint Nicholas in their wellies, I discovered a wrapped present in the mailbox. From the saint as well? It had my name on it and my heart started beating a little faster. Someone anonymous dearly surprised me: the present contained a.o. some vouchers for Bagels & Beans (my favorite local lunch spot where the best decaf cappuccino is served). No roses were raised, but actual coffees ánd right for grabs.

When Kenji put on Little Brother's coat, he started to weep like crazy: his papa hadn't helped him since late September. By late November this simple gesture made quite an impression. The four of us went out again! It was only a walk around the block, to the Bagels & Beans to pick up some (free) bagels for lunch. Maybe the boys noticed that Kenji was not able to walk any further, but that didn't matter. We had a family outing, regardless the duration or distance.

I turned the kitchen into a bagel making station and everybody got to place their order. With immense gratification I prepared four plates and felt once more so blessed by the support of strangers. When Kenji's doctor called to check up on him, he could truthfully tell him that he already had his walk in the sun. Today two white paper bags with sesame and sun-dried tomato bagels made all the difference.

Happily ever after

2011-11-29T16:02:00.001+01:00

We are doing our best. The best we can and at times even a little bit more; the bit that means pushing all your boundaries. The bit that lets you discover that
you again had what it takes to go the extra mile.
For Kenji to decide for a risky stem cell transplantation instead of against it, was making the greatest effort. Pulling himself together and getting out of bed every morning since, is a bigger achievement than anyone knows.

For me to stand by Kenji's side is nothing. Obviously this is what marriage is about. Where "In sickness and in health" at first seemed to have transformed our marriage, I don't see a change anymore if I look at it objectively. I see a clarification.

Walls have disappeared. Not because I administered syringe after syringe of chemo, or because I shaved Kenji's head so many times. It wasn't because I nearly gagged when supporting him at the umpteenth bone marrow puncture, or any other medical procedure I attended. The tears both of us shed or the fears we shared, didn't bring down the walls either.
Time revealed that freedom is the key. The freedom to let Kenji be as he is, terribly sick, and as he will be. The freedom I really should have given Kenji from the first day we met. Because precisely for who he is,
I chose to be with him.

Mirror Monday #29

2011-11-28T12:17:00.000+01:00

No currency converter in the world will do justice to the true value of each euro and each dollar that was donated for Raising roses: love is simply invaluable. Just as your warmest generosity cannot be properly measured, the words to express my gratitude would never suffice.

Drinking a comforting cup of coffee in the horrible hospital or turning up the heater when Kenji is still freezing no matter the layers of clothes and blankets, without having to worry about the extra costs any longer. Feeling all loving hands extended and softly floating on your net of support: it moves me more than I could ever say.

I'll blow all of you a big thank you kiss!

Rest assured that in time I'll thank each and every one of you properly. Your roses you have made the difference ♥ (The beautiful crocheted flower garland on the mirror was a gift from Ingrid).

Speed dial

2011-11-27T10:51:00.001+01:00

We now sleep with a fully packed hospital bag next to our bed. Just like the last days before delivery - except the baby is already born. The latest doctor's order causes commotion; much rather would we ignore this visible sign of insecurity.

On Tuesday Kenji had a scheduled hospital appointment. Then on Wednesday I had to make an emergency phone call. On Thursday Kenji saw another doctor, who called us back on Friday. Early Saturday morning Kenji called the hospital again and was summoned there immediately. Several hours later he was discharged again. Today another hospital call is scheduled and then what? For the next 48 hours a hospital bed is set aside in his name.

We don't live by the day anymore, we're back to living by the hour. Sublime mindfulness with the oncology ward on speed dial.

Yesterday's breakfast turned into a family meeting where we had to be open to the boys about Kenji's worsened state. Tears were running down our cheeks. Totally collected Big Brother grabbed our hands, mine in his right and Kenji's in his left. Little Brother followed his example and together we formed a circle. Moving on to the next hour.

Sitting and counting

2011-11-26T08:32:00.002+01:00

At the end of a long day, and an even longer week, I poured myself a glass of red wine and leaned back. Ate a delicious sugary speculaas flavoured macaron, freshly delivered by our organic farmer that afternoon, and then had two more. If you are tasting the forbidden fruit, why not go for an overdose?
The sugar and the wine produced the much desired "Ahhh..". So I poured some more, lit a couple of candles and took out my nail polish container.

While I was painting my toe nails, I looked at Kenji sitting at the couch across of me with his blanket pulled tight, freezing from cold and exhaustion. And I wondered: what is his reward at the end of the day? He who fights so much harder than I'll ever have to, who undergoes his life rather than living it at this point. He isn't allowed a drink. One macaron is already too much for his stomach. He is too tired to watch TV or read a book. He just sits; his eyes sometimes open, sometimes closed.

Kenji counts the hours. From the pills at 8.00 to the ones at 12.00. From the medicinal drink at 16.00 to the pills at 18.00. From the pills at 20.00 till the final round of pills and drinks at 22.00.
The only thing I'm able to do is counting with him - and serving each round with a kiss on his bald head.

Gratitude

2011-11-25T13:12:00.000+01:00

Five things to be grateful for:

#1. Kenji's hospitalization that seems to be averted for the next 24 hours - even though it's clear by now that acute graft versus host disease has struck again.

#2. Little Brother and Big Brother who out of the blue have found each other in a mutual imaginary world of play. They mother over their cars like they are dolls and sing them lullabies!

#3. The communication between hospital and pharmacy that for once is going smooth. New meds will be delivered at our doorstep which saves me a trip through the rain to pick them up.

#4. A picture of a beautiful Buddha statue, covered in autumn leaves, texted to me by a friend: the perfect pick-me-up during my weekly cleaning session.

#5. The ability to truly find peace in the littlest things. Whatever the future holds remains unknown, but the present moment is blessed for bringing us togetherness.

Popping the bubble

2011-11-24T13:38:00.001+01:00

Last night the emergency phone call to the oncology ward put my feet straight back on the floor. Pierced the bubble with a loud * pop * and cleared my overwhelmed mind. Armed to my teeth I realized that the battle is on again.

When I was finally ready to go to bed and switch off the light, I all of a sudden recalled the two wellies waiting for Saint Nicholas. I burst out laughing - the first loud laugh in days! - and hurried back to the kitchen. I wrapped presents, hid chocolate coins in the living room and was grateful that my spirit was instantly lifted by this Saint's tradition.

Today at preschool I found Big Brother singing as loudly as he could in front of a paper chimney, covered with paper crafted shoes. He was completely under Saint Nicholas' spell and didn't notice me entering.
My eyes filled with tears and I remembered how Big Brother made his first painting ever in preschool last year, one of Saint Nicholas. That portrait of the saint was an interesting collection of brush strokes..., this year's is a decently painted one within the lines. Singing in public? It took Big Brother forever to join the preschool group in their daily good-bye song and rhyme. Seeing how he has found his own safe place away from his trusted home made me sooo proud.

I needed the warmth inside my heart as fuel for the upcoming battle. Either the new stem cells that are misbehaving badly or an unknown infection: I'm ready to face the enemy.

Living the change

2011-11-23T10:01:00.000+01:00

On some days life is like a dream: not an horrendous nightmare anymore, but also not a pleasant one, like when the corners of your mouth curl while you're sleeping. Just a very weird and distant dream. A bubble that is surrounding you and seemingly separates you from 'normal life' and 'the others'.

Walking next to your bald-so-obvious-cancer-patient-husband in the hospital.
Stroking his knee during the first of a series of at least 52 weekly checkups with the haematologist.
Picking up more meds in his name, when he is actually sitting right behind you in the pharmacy.
Being ábsolutely ástonished about the massive response in words and actions on Raising roses.
Whatever direction I look, I cannot believe that what I see is for real my life.

We're not living the dream, we're living the change. And right now I'm overwhelmed: it's all a bit too much.

Raising roses: the Roos & Kenji Medical Fund

2011-11-22T07:54:00.006+01:00

Having laid our financial cards on the table, deep down I knew that all I had to do was ask. Yet asking for money is the hardest thing to do. And then someone else stepped up and asked for me. For us.
Without me knowing, my beloved Zen-teacher in the USA Karen Maezen Miller, set up a fund in our names: the Roos & Kenji Medical Fund.

On her blog Karen Maezen Miller calls to "raise roses": money to cover the unforeseen costs of cancer. From medicines that won't be fully reimbursed to a simple (but much needed!) cup of coffee during a long hospital day. "I’ve never launched an appeal before, but I know from growing roses that every bud blooms. This ceaseless bloom is what makes life beautiful even in the harshest of circumstances."

Read more here or donate directly below: truly every little bit helps.

It’s time to raise roses. Let me assure you that we are more than grateful for every opportunity to bloom that is coming our way!

To donate in Euros:

To donate in US dollars:

Thank you for spreading the word via your blog, Facebook or Twitter ♥
And feel free to grab the button too (thanks Casper for your great design)!

Mirror Monday #28

2011-11-21T10:47:00.002+01:00

Last Monday when I took my picture I was secretly keeping my fingers crossed that Kenji would be discharged. And hours later he was. Instead of my husband I was handed a newborn baby - or at least so it felt. New pills, new side effects and those wondrous new cells led to a whole new level of exhaustion.

Never before have I seen Kenji so utterly weak, not even during his nastiest chemo treatments. His new condition unintentionally puts new pressure on me. Let me confess: I'm more than done with new.

All week I've been dreading the next portrait picture. I was afraid what the mirror would tell me.

Thank you for your comments and emails about the costs of cancer. Very useful! I might look into the paperwork (if time permits...) and maybe even consider some way of making money with my blog...

The costs of cancer

2011-11-20T10:33:00.007+01:00

I often think how we would have been long bankrupt by now, had we been living in the United States. The costs of our medical bills surely must have gone so over-the-top that we would not have survived leukemia, and by that I mean all four of us.

To my dismay I was handed a huge bill when I picked up Kenji's bags with medications at the hospital pharmacy. The fact that Kenji's doctor ordered the prescriptions and each medicine is part of the transplantation protocol was totally irrelevant: that specific type of medical drink simply wasn't covered by health insurance. One bottle would have been fine, paying
€ 6,70 isn't bad. Except Kenji uses two-thirds of a bottle a day, which means € 87,- for a monthly supply.

We're facing six months to a year of this crazy amount of medications. Add to that the taxi costs and the recently raised health insurance premium and own risk. The yearly energy bill that will be much higher than last year's due to the numerous extra laundry cycles on high temperature. My travel costs from commuting to the hospital plus the essential meals and cups of coffee. And the list doesn't end here, not by a long shot.

Summing up these costs not only makes me sad, it also worries me. The chapter 'Unforeseen' won't be closed for a long time. No financial alarm bells started ringing when the diagnosis turned our life upside down, but I wish we were warned in advance - even in the Netherlands where the social system is supposed to be so sufficient. The unforeseen medical part is already quite enough to deal with...

Movie night

2011-11-19T09:35:00.001+01:00

It's our first movie night since Kenji is home. Both of us are exhausted, but we are forced to stay up late for the last round of pills. To kill time - and for old times' sake - we decide to watch Fred and Ginger in Follow the Fleet (1936).
Kenji is freezing and sits shivering on the couch, my (d)ecodeken wrapped around him as a big multi colour cloak. I want to crawl next to him, but his body is too weak to have mine leaning against it.

Fred and Ginger aren't the same. Nothing is the same anymore.

I look back and forth from the television to Kenji's bald head, his tired complexion and his sad eyes. The grand finale sails past us unnoticed: we cry. A roll of paper towels in my hand, some proper tissues in his.
While Ginger gets lifted by Fred as light as a feather, my man mumbles: "All I ever wanted was to make you happy; and now you are so sad."

After one pill and two medicinal drinks, I fall asleep in Kenji's arms. Still sniffling.

Telling it like it is

2011-11-18T14:49:00.003+01:00

Months ago a mother from Belgium wrote us, since her little boy was diagnosed with ALL as well. We stayed in touch ever since: a 6-year old and a 37-year old, fighting hand in hand. She mentioned how grateful she was for me to dare
'telling it like it is', for not hesitating when it comes to sharing the harsh reality
of our daily life.

We live in a box. A box where there is only room for four people.

Our box has no windows, although others believe they can have a peek now and then, and get some sense of what life inside the box is like. They cannot understand - no matter how compassionate they are. I very much struggled with the need to overly explain and illustrate; to make living with cancer more accessible for those who haven't encountered this enemy in their lives. I figured that if 'they' would just understand, our own battle would somehow get easier. Yet any misplaced remark or critical note, intended or not, hurts more than an innocent bystander knows.

The longer our battle with cancer lasts, the more I am convinced that our box has no door as well. We keep going to in circles to find our way out. So what's left? Facing the inside of the box: our four hearts.

What to expect

2011-11-17T14:20:00.001+01:00

I only knew a little bit about what posttransplantation life was supposed to look like. At least I was given some sort of lead, because I didn't have the slightest clue when cancer came barging into our lives.
I expected complete weakness and whims of despair. I foresaw disappointment and worry. Besides that I feared the expectations of others: the transplantation
is over, Kenji is still here and now he is even home. Jolly good.

I did my utmost best to let go of my expectations (and I still do). The weakness-and-despair-part? Check. Disappointment? Speaking on behalf of the boys, for sure. As Kenji succeeded in finishing his plate, Little Brother asked him: "Are you strong now?" A bit stronger than before, that's all we have to offer. Worry? Flowing in abundance. The fact that everything did turn up, doesn't mean that letting go in the first place was unnecessary. On the contrary, I don't know how I could have stayed sane if my whirling mind had taken over.

Yesterday Kenji had to return to the hospital; another visit is scheduled for tomorrow. Even though we're strongly rooted in the present, we couldn't be more aware that nothing is done yet.

O kom er eens kijken!

2011-11-16T09:25:00.003+01:00

Kenji consists of bits and pieces. And that isn't a metaphor: there isn't a whole Kenji yet, only fragile parts that are loosely clinging together. He's bravely going through the motions, tries desperately to be the man he was.
Kenji is not. It is the house of a newborn indeed. I sleep, but watch over him at the same time. I set out pills with utmost attention six times a day. Having eyes at the back of my head whenever he's around, and even when he isn't, is O.K. - all of it is O.K..

The other two babies need my attention too. Well, there's more than enough for everybody.
Before bed, Big Brother and Little Brother place their wellies in front of the kitchen window. Carefully insert a big carrot for Saint Nicholas' horse. Big Brother surprises us with his adorable singing, apparently he has picked up some traditional songs already at preschool.

This morning they are stunned to find 'pepernoten' and a present in each wellie. [O kom er eens kijken! = O come and see! a title of a Saint Nicholas song] A Saint Nicholas booklet and cd, that of course has to be played right after breakfast. Big Brother literally dances with joy: "I am so happy I can feel it in my belly!
I like Saint Nicholas!"

Being a saint is the most marvelous job of all.

Home

2011-11-15T13:44:00.002+01:00

Our first proper kiss after a month tasted weird and amazing at the same time.

Kenji was waiting for me in his room, along with a huge pile of prescriptions.
I packed his bags and went to the hospital pharmacy where I obtained another bag, full to the brim with medications.

The autumn cold hit him when he walked out of the hospital.
Actually the outside world hit him.

The boys ran in into his arms and in an instant Kenji became papa again. However after the initial joy, Big Brother was even more angry than during his absence. 'Papa at home' wasn't 'papa is recovered', which saddened him to his core. Little Brother was mostly dazed: he was so sure papa still had to leave again.

Now that we are reunited, the six weeks separation and its continuing effects become clearer and clearer.

This morning I opened my eyes and Kenji was there, right next to me. Really there! We had an ordinary family breakfast - except I had to sort out the dosages of eight types of medication and cut up some pills. The obvious start of posttransplantation life.

Kenji is home and everything has changed. He is holding a frail new life in his trembling hands.

Mirror Monday #27

2011-11-14T09:19:00.000+01:00

The smile is still there. Because as time goes by, I feel my spine grow slightly taller. My eyes opening a bit more. My mind calming down little by little.

I don't do things 'just to some extent', I always do them as passionately and as fully as possible. Maybe it's the regularity I love so much that I want to do éverything well, maybe it's my subconscious Zen nature that is beginning to blossom now. Practice good.
So when I've set my mind to something, doing half the job is never an option. As easy as pie for me - although my choices rarely turn out to be easy: I'm practicing.

And it starts to show, I think.

Mamas are brave

2011-11-13T17:10:00.003+01:00

My body is still freezing from watching the arrival of Saint Nicholas. The fact that I alternately lifted Little Brother and Big Brother for one and a half hour should have helped - yet my overactive arm muscles couldn't warm my heart.
I had to swallow my tears several times. Going to this year's arrival was a clear case of showing my bravery.

I cried last year. And the year before. Big Brother was only nine months old and managed to get his first 'pepernoot' [a typical Saint Nicholas gingerbread-like cookie]. But by the time Saint Nicholas rode by on his white horse, he had fallen asleep in the BabyBjörn and looked the cutest. Ah, reliving your childhood memories through the eyes of your children is obviously an easy tearjerker.

I remember how strangely pale Kenji looked at last year's pictures. How he kept on complaining about not being able to properly lift Big Brother. How utterly exhausted he was, again, and how utterly fed up I was with his ongoing fatigue. The horrible nightmare called acute leukemia had already started and we knew nothing about it yet. I wrote: "Het geluk was even zo groot dat het pijn deed." [For that moment happiness was so vast that it hurt.]

The more the date of Saint Nicholas' arrival approached, the more nervous and sad I became. I knew I had to go there, without Kenji, and be brave. Apparently mama's are blessed with an overdose of bravery.

Lighting my heart

2011-11-12T19:41:00.002+01:00

I took a 48 hour break from the hospital. It wasn't so much Kenji who was wearing me out - on the contrary, I would love to spend every minute of the day in his presence - it was the oncology vibe. The scent of chemo. The look of heads covered in turbans. Being surrounded with seriously ill people on a daily basis isn't a sinecure and after ten months it was simply enough. I was done with cancer.

Kenji's body is no longer hopelessly fighting, it is building itself anew from scratch. Every cell in his blood is performing at its highest powers without interruption. We keep watching the figures, the blood values, and the charts - and ignore the bloody miracle. Literally.

When you're confidently looking ahead, it somehow doesn't feel right to be on the oncology floor anymore. Kenji of all people knows the feeling, yet he didn't get a chance to take a break. I grabbed mine. Intensely enjoyed the boys their first St. Martin's feast where they proudly paraded with their paper lantarns.

Their lively eyes were the biggest lights of all: lighting my heart like never before.

Sometimes you need...

2011-11-11T12:51:00.001+01:00

A new haircut.
To view a soothing garden.
The ringing of the doorbell and a surprise bunch of flowers.
To tell your husband you're taking a break.
A toddler fever to disappear overnight.
To sob and face your raccoon eyes.

Sometimes you need it all.

Sometimes all you need is a teacher, to lovingly blow away the fog.
"It's autumn. Everything has to fall first."

Descending fog

2011-11-10T13:57:00.000+01:00

This morning it took me almost half an hour to get dressed. I kept lingering in front of my closet and as the minutes passed, the boys got more and more annoyed with me. I couldn't blame them. I couldn't blame myself.

Sadness prevails.
Sadness hurts.

Somewhere at the end of the tunnel there must be a light. I knów I have seen it before and deeply trust that I will see it again, but this very moment sadness has clouded my sight - to say the least. It's more like slowly moving in circles in dense fog: I cannot directly see what's in front of me and whatever I'm touching seems to be slipping through my fingers, into the foggy air.

No weather report to warn me the fog was approaching - it literally happened overnight. Yesterday the doctors were slightly optimistic, a day later they overtly express their disappointment about the meagre results of the bone marrow puncture. The light at the end of the tunnel crawls away even further.

Mrs. Monitor

2011-11-09T19:42:00.000+01:00

Hospitals are a serious learning place. I've been coming and going there for five weeks now and just like that I acquired a new skill today. Who'd have thought it was time for something new?
In exchange for a steaming hot cup of black coffee I get to stare at a monitor for a full hour. Checking up on Kenji's heartbeat and saturation. Pressing the reset button every few minutes if the saturation meter stagnates. Well ain't that cool...

After ten months of hospital experience I sort of know where the numbers are supposed to be - and when to push the emergency button. I actually monitored Big Brother like this when he was in the neonatal unit. But watching my husband? On his chest lies a weight wrapped in a plastic blanket to firmly press the wound of his puncture. Red rash marks his skin: another manifestation of the acute graft versus host disease. His beard consists only of some left over stubbles and besides his hair, half his brows and lashes are gone. The chemo, the transplantation with it's creepy complications, but above all the in-fi-ni-te waiting have turned him into a shadow of his true self.

I'm supposed to keep a close eye on the monitor but I cannot stop staring at my love.

Pil(l)ing up

2011-11-08T16:41:00.001+01:00

Remember last Friday? The yet-another-bad-news-day? It was complication time. An expected complication, nevertheless one that makes you hold your breath. In hindsight that's the stupidest thing to do, because to stop breathing isn't going to get you anywhere.
Complications after a stem cell transplantation are the foremost reason to give up and stick with good ol' chemo. The morbidity ánd mortality risks are never far - yet people often forget that each day of cancer is one of living with high risk.

So Kenji has acute graft versus host disease that is manifesting itself in his bowels. Newly transplanted cells are attacking Kenji's body... The only way to look at the disease, is as 'nothing unexpected' and so I start to breathe again after a few days.

Pills, and more pills, imply side effects, and more side effects. My preferred antidote to Kenji's tumultous mind? A dress. The Maison Scotch dress I wore at our last dinner in La Rive. If I am meant to shine, then I better do it as elegantly as I can. All good intentions aside, in the end it isn't the dress that does the trick. Two cars, one of Little Brother at Kenji's left and one of Big Brother at Kenji's right side of his bed, perform miracles.

Mirror Monday #26

2011-11-07T13:26:00.000+01:00

Time to think, time to let the seeds of my wildest dream sprout. On Sunday morning Kenji and I took a long walk through the deserted hospital. With each step I thought out loud. And I decided to lovingly embrace all thoughts that came up instead of burning them down and censuring myself.

I can be anything I want to be. Add to that the notion of already being perfect - the Buddha-nature - and I cannot wait to open up even more. See why I wrote myself some notes yesterday? I strongly envision a future, for the first time in ten months of cancer.

Lo and behold: a little smile! (The fab wintershawl is by Maartje van den Noort, a gift from dear Anki.)

Notes to self

2011-11-06T19:51:00.001+01:00

#1
You have to wholeheartedly believe that you can be anything you want to be
(and not just say the words), if that is what you will want to pass on to your children. If there continues to glow even the tiniest glimmer of doubt deep inside you or if you let yourself be held back by previous mistrust and criticisms, you are depriving your children of the truth.

#2
Buddhahood does not exist outside oneself as an object to strive for, since we are all Buddhas from the very first. "If one did not have the Buddha-mind within oneself, where would one seek the true Buddha?" *

* Roshi Philip Kapleau, in: The Three Pillars of Zen, quoting The Platform Sutra of the Sixth Patriarch

These boots are made for talking

2011-11-05T19:29:00.000+01:00

A spare room filled with Italian handmade boots, all waiting to get tried on: is there a better way to spend a morning off? When friends invited me at a fitting where I would have first choice, I knew it was a guaranteed way to leave my cancer world behind. Simultaneously I entered their cancer world though, which in fact made me feel right at home.

Not having to communicate in ways of constant explaining and elaborating, but to quietly talk. Looking cancer in the face and knowing that our marriage isn't the only one where sleeping with the enemy is the order of the day. The relief of almost guessing what the others are thinking when it comes to cancer or cancer related subjects; stuff that is often too heavy for outsiders.
No matter how hard even my best friends try to fully 'get' my life at this point, they cannot. And that has absolutely nothing to do with their utter willingness to sympathize or with my communication skills: there is simply a hurtful clash both sides need to acknowledge.

Bright pink cowbow boots, or plain brown ones. Or maybe the pair out of navy suede. Wriggling my foot in each brand new boot with the help of a plastic bag was hilarious and so uplifiting.
We were friends before we became insiders. However to have insiders as friends is a life-saving blessing - not to mention the absolutely stunning boots that came with it!

Breaking the rules

2011-11-04T20:04:00.008+01:00

No matter how you roll the dice, the outcome is always: risk. For the past few weeks after the transplantation we have done everything we can to avoid risks. Strict hand hygiene, the mouth masks, keeping our distances and skip even the slightest kissing or - when it came to the boys - stop seeing Kenji altogether.

When loved ones are ill, one often tends to bargain with medicine. To persuade a doctor to make an exception, honestly believing that they deserve better than any other patient. Trying to get medicine on your side.
That is not why I kept a passionate speech in front of Kenji's haematologist to break the rules. Yes indeed,
I asked him politely whether we weren't a bit too strict when it came to the isolation rules. Well aware of the huge risks of infection, I still pleaded for an opening - literally. And the doctor heard me. He understood my strong concerns perfectly and with a "Whatever is necessary to get you through a couple of more endless weeks in this room", he permitted Kenji to be a papa again.

This afternoon Big Brother and Little Brother extremely brave managed to suppress their instincts and run straight into his arms. They washed and flapped just as I learned them, and then got fully rewarded by an enormous papa hug.
Kenji needed to be someone else than just a patient. And Big Brother and Little Brother's visit couldn't be more well-timed: another portion of bad news reached him minutes before his sons entered his room.