Solitude therapy

Solitude for me is the therapy I need to make sense of life.
All fears can be observed and analyzed in the quiet space and honesty of my own consciousness.
Fear for death is related to my body, not my spirit, not that space inside in which I live.
Energy is required to communicate with the ones I hold dear.
Energy is required to sing, to enjoy smelling what the autumn wind carries to me.
Loneliness is a state of mind which needs energy to vacate.
Willpower tips the balance between inertia and flow of energy. That will is not always there, especially not with meaningless pain.
Feelings, love and emotions are at play, and their playground shares the same space with solitude.

The day after, staying the course

This morning I feel like a punching bag. Swollen inside, from being hit all night by imaginary boxers. The medicine really brings the fight to every part of my system. The results of the blood test is now near normal, except for anaemia (low level of red blood cells) and ALP (enzyme indicating metastasis).  I had woken up many times due to dehydration, to clear my nose and throat and to drink. It's a common side effect, draining much needed energy.

So I stay at home after walking my daughter to school in the fresh, early autumn wind, warmed by the pale sun, feeling lazy and let the body recover. With foresight, I asked my colleagues not to count on me, and planned back-up for critical review meetings. This makes me feel relaxed and not guilty of chickening out because of a little discomfort. 

My quietly loving wife just gave me a delicious cake with whip cream to go along with the coffee (original Douwe Egberts, hand carried by my son form Holland). Sometimes that is all it takes to motivate me to get going again and 'kick the can down the street' so to say. Like my sister Tinelies, earthly sweet comforts have always settled my mind, mouth and stomach in times of sorrow and grief.

All my life I never cared much about winning. Also now. I care about harmony in body and mind, and socially, about all who love me and who need me. For all of you I fight so that I can be with you. That is also one of the reasons why we live in Japan as this society is based on social harmony. The quiet, selfless caring for strangers heals me unconsciously. It soothes my mind, and nourishes my spirit.

That deep drive for harmony, is my Brandaris, the lighthouse on the island Terschelling where we went for holidays as kids, and where I went to school to become a sailor. My mother who instilled this passionate drive for harmony in me, painted this lighthouse and it found its place on our wall in Tokyo. The reliable flash, every 5 seconds, provides the comfort to a sailor like me, when passing the treacherous shoals hidden under the white crested waves. That is the closest depiction of what life is to me, and what guides me through it in times of trouble. 

Not having a strong will to win can be tricky, because while lying awake in the quiet solitary hours of the night, it is easy to think: 'when the end comes it comes' and let go of all gritty spirit, feel like a small blink in the nightly skies, like a tiny fish in the wide ocean.

Its therefore important to take time to recharge, to re-establish 'the why', to stay focussed, stay the course and be strong......

The third infusion, effect of a day in the hospital

Yesterday was a long day waiting in queues in the hospital. Many patients lined up for infusion. It made me reflect on why I had written such (apparently moving) prose to my family and friends. Why would I want to invade their lives with my trouble and stir up all kind of emotions?

Honestly, I prefer to deal with it myself, and not be a bother to others. That is how my clock ticks and how I have dealt with major trauma's in the past. But as I have learned from my brothers and sisters, knowing what I go through makes it easier for them to connect and help me.
Still.... I felt the conflict of choice to deal with this in solitude. Anyway, wat is done is done.

Being among hundreds of cancer patients yesterday, their visible signs of surgery, their empty eyes, pale or black skin, sad but grateful smiles to visitors, quiet demeanour... I was energetic when I came in that morning, but was completely drained by the time I reached home.


ps: In the hospital I realised that the questions I asked myself in the previous blog (about what we are not, and what we are not given) requires more thought and I will write about this another time.

Live, fight, wait, accept and overcome.

When one contemplates that life cannot be lived without pain, when patience is meaningless and lost without finding and taking time?

Why is it that life flows naturally in time, and without patience life becomes a hasty obligation without horizon?

Which choice does one have in the morning other that enjoying the blurry gift, or routinely rush into it and greet exhausted sleep?

Who leads the way for those who are oblivious, and show them what is value? Who can teach love, giving and caring?

What isn't given, what cannot be learned, what is hidden, cannot be found, what is the book we can't read? What are we not?

Where lies the anchor of the spirit, the fresh spring of thought, the infinite goal of grace? Where shall we start?

It is easy to ask, and one day clear to see, but do act now, be an example and make inner strength count.

Go every mile, suffer every ache, fathom every fear, knowing that destiny awaits.

Be the radiating beacon. It's a calling, to guard what we hold dear.

Live, fight, wait, accept and overcome.

Dear family and friends

You are far away but close, I feel it as if all of you were by my side,
your daily thoughts, prayers, your messages, calls and cards.

We have moved to Japan and Yuka is organizing the house,
like I have moved to a new body, clearing it from cancer.

Treatments like surgery and proton beaming succeeded,
the cancer in nose and sinus have cleared, disappeared.

The difficulty of mucosal melanoma is its speed and aggression,
within 2 months, through my blood, it has spread to many places.

It appeared on the PET scan in  my bones: spine, ribs, arms, legs....
I call it mine, as I have come to live with it, accepted it as mine.

My body fights continuously, I can feel it, as I am always tired,
inflammations come and go, anywhere in the body. Itches...

My mucosal melanoma in the bones is a blessing I can say,
it's so rare that the specialized Melanoma hospital took me in.

Why is it a blessing? Mucosal Melanoma appears in the head,
or in our reproductive organs and nearby spaces. Dreadful.

The stories I have read, fearful experiences shared by fellow patients,
they are not for children to read, they make you cry, and cry again.

Hence, I feel blessed with my bones harboring my cancer safely,
fencing it off from my organs and make me live my life and love.

The Opdivo immunotherapy developed in Japan over the last years,
works well, especially for my type of cancer. It's a blessing.

Infusions, a train ride away, continue every 2 weeks until November,
a scan will be made to mark progress, and decide what to do next....

Can I thank you all again for believing in my recovery? Thank you.
It's His will that I am tested and that treatments work. I just fight.

He fuels my spirit, provides me with love from all of you,
I am the candle, lit by His light, warming those in need.

Welcoming every blurry morning, when opening my itchy eyes,
bringing Marika to school, and walking to my office next door.

Love, Cor

The day after the second Opdivo infusion

Yesterday was a very predictable day. Enough time for power naps during the long train ride, long waits and a long infusion. I had a comforting talk with my oncologist in a mix of english and Japanese as I had come alone. ALP levels are very high, but red blood cell levels are coming up again. I explained him about the increase in pain in the ribs and about the rashes on back, stomach, chest and arms.

According to cancer.org, pain in the affected bones is the worst at night when you don't move, and less when moving around. For me it is the opposite, so I am not so worried. And for the skin, there is no itch as long as I don't accidentally scratch it so I asked for a prescription for some cream. The itchy eyes are probably caused by the rash on the eye lids so he prescribed eyedrops to keep the eyes moist.

This morning I woke at 5am with pain in the ribs, and eyes refusing to focus. The head was very heavy and the neck stiff. Nothing really serious but its easy to link everything to cancer or side effects of Opdivo. I wrote my bro's and sissies that I refused to follow that mental path, and decided that various normal root causes could also be the origin of pain, like lack of exercise, normal infections and dry air. So the Japanese bath is the treatment of choice, soothing the stiff muscles and red skin. I apply vaseline on a super itchy sore on my back.

And so the 2 weeks after my second treatment commences with positive mindset. When I have the energy, I read metastasis stories on the FB site of Mucosal Melanoma Warriors which helps me prevent sticking my head in the sand and face the reality of this disease. Giving support to others makes me feel good and sharing my experience surely helps others based on the feedback. The story of the 2 terminally ill men in the hospital comes to mind. Wishing everyone a great day!

The 1st week

The first week started with fevers and tiredness. The heavy head was probably still radiation related, but possibly not. After a few days it all settled and I could slowly buildup my stamina by walks, yoga etc. it took about a week to regain my health.

I joined the melanoma warriors fb group to get into touch with patients and care givers in the same situation as me.