Beaujolais nouveau 2017

Today is that day, and we celebrated quietly with a bottle and some cheese. Since I switched from white to red wine, I start to enjoy the reds. It took a while to get used to the tangy taste, but now its getting easier on the tongue.

This is one more of those small things in life I am learning to enjoy. My father in law had plenty idling bottles and they found a new home. Now I am drinking a glass or two and the rest of the bottle is used for cooking.

Life has enriched me with new taste buds and all articles praise the good effect of red wine on health. The anti oxidants fight the free radicals as a good friend told me a long time ago. Cheers Thomas!

Scan results came in. Great news!

It had been 2 weeks since I became aware that I would not be clean from this disease. So I felt rather numb and let my wife do the talking. The doctor was satisfied with the results as all grey areas indicating tumours had reduced in size.
Afterwards we had a nice lunch of sashimi, from next door Tsukiji fish market.

After the 7th infusion, I went home in a great mood and translated the report. I found to my surprise that melanoma had metastasized into several organs beside the bones. I had not been aware of that.....

CT-Scan of Aug 09, 2017 compared with the result of the Oct 30 2017 inspection.

• Nose/sinus: Soft shadow is recognised in the surgery scars. 
• Brain: The tumour found in the right cerebral bridge artery has shrunk from the previous time. 
• Liver: Low absorption nodules found in the left lobe of the liver are unclear compared to the previous scan. (progress cannot be observed) 
• Kidney & spleen: Metastatic lesions of the left adrenal nodule and the retroperitoneal cavity of the dorsal side of the spleen are shrinking from the previous time. 
• Gall bladder: There are numerous deep nodules in the gall bladder cavity. There is a possibility of metastasis shrinking from last time. 
• Bones: Multiple metastasis found in bones of the whole body is slightly osteoclastic change progressing from the last time. (osteoclastic activity = repair activity in the bones)
• Lymph: No significant swollen lymph node in the neck and chest. 
• Lung: No pulmonary metastasis. No pleural effusion. (Water outside lungs) 
• Abdomen: No significant swollen lymph nodes in the abdomen. No ascites. (accumulation of fluids in abdomen)

Brain, Liver, Left Kidney, Spleen, Gall bladder and bones: spine, upper arms, upper legs, ribs and hips. Quite a Christmas tree....

Nothing can get me down, and I will undergo the second set of 6 infusions. End January the next scan and then I hope it will all have shrunk even further. Hope, Love and a newfound purpose in life pulls me through. No more tunnel with some light at the end, no, light is now all around!

it works

On 1 November I woke up, brought Marika to school and went to work like it was a year ago. Full of energy, not looking at the clock and the just completing the day's tasks. Great.

Next task is to continue my guitar lessons and study Japanese. Life is smiling at me again, sitting outside in the sun with 21degc.

It works! Mind over matter.

a plan has come to me

Today is the rest day after infusion. As per my experience, I have to be ready for any side effect. This time the fatigue isn't that bad, the fever isn't coming, the headaches are minor, the rashes stay away, the itching eyes are bearable and the stomach is as always noisy and painful. If ever I will be able to overcome the emotional shackles that come with this sickness, I will have to take a bold step mentally. A step to decide enough is enough.

I therefore decide now that I believe I will never be cured and that I stay chronically ill. I will take infusions the rest of my life and scans every 3 months to keep an eye on metastasis. As part of the bargain, I will resume a normal life now, return to work and I stay aware of fatigue attacks and other side effects of Opdivo.

This new lifestyle is wonderfully different from what I went through the last 9 months. It is the way to live life again as it can be, and should be lived: Enjoy every moment and be happy with what I have. Live life as if it can be lived only once! Thats my renewed goal in life.

Join me!

Silly fun after the 6th infusion

The scan brought news that there are still grey spots visible (affected by cancer) in the spine. It was not a PET scan, so it was not easy to see for me if those spots were still active. In a few days I will get the detailed report, which will provide a conclusive description. In the meantime I agreed to continue the Opdivo treatment as the blood tests show that the body reacts to the treatment and all measures have almost returned within normal limits.

Not much to be happy about, but also not so bad. I shared the news with my brothers and sisters on the way home. I felt numb, tired, unable to feel positive. I had hoped for clear improvement and without the details I couldn’t move on yet. I was left in limbo, unable to make sense of it.

I will have to find a way to get used to this type of result, and stop expecting a cure or conclusive answers. The good thing about the long train ride home is that the news (or lack thereof) had time to sink in. I took a hot bath and went for diner with my daughter, braving the cold wind after the typhoon.

We had so much fun while enjoying our favorite salad bar, being serious and silly. She asked me if ‘Wow’ is a word. I answered that it’s more like an expression like ‘hoepla hoekstra’. She laughed so loud and long she almost peed in her pants. Such silly fun with my lovely daughter is what makes life worth living.

Typhoon

I realized that I stopped thinking,
beyond the day I get a next scan.
It’s not a total blank in November,
but what’s missing, is a plan.

No thoughts about newfound passions,
no reading what retirement will be like....
It’s like the future has just disappeared,
there is no visible trail, to take a hike.

Now, the spring of my inner strength,
is not fed by promise or premonition.
What I have, provides me happiness,
kindles my flame, is my daily ignition.

The edge of my world is 9 Days away,
beyond lies a veiled outline, a new start?
Perhaps I can start dreaming again,
and my hope will not come apart.

Like a typhoon, pounding relentlessly,

cancer demands respect, leaving a deadly trail.

Hope provides shelter, from nature’s forces,

I used to sail, challenge myself, now I feel frail....

Being honest with myself, drives me on,

it releases my energy, my slowing chains,

We are passengers, keepers of knowledge,

we pass on, what’s in our children remains.

The 5th infusion

Side-effects of infusions are getting less
Blood test results are getting better
Infections are slowly disappearing
Dehydration is getting better
Itchy eyes are improving
Autumn chill feels great
Energy is coming back
Work is still tough
Getting better!