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!

The 4th infusion

I went to Tsukiji hospital with a cold. I felt quite terrible with a swollen throat, and bad night rest and all. I did bring Marika all the way to school which was so sweet and relaxing. It was 15° or so and really weather for jeans and a sweater. Without turbines in my left nostril, the cold air went straight up my sinus and caused a kind of brain freeze. Seeing Marika turn and wave made me fill with fatherly pride and love. What a girl!

Refreshed with completely new energy I was ready for a day of blood tests and infusion. The results were quite good. Except for minor stuff like anemia (low red blood cells) and high lipase (fat burning enzyme) all was normal. With a beaming smile I felt elated, so powerful. The doctor and nurse smiled  listening to my new found research on the web and plans. He said: ‘It’s too early to decide..’ I countered instead that it’s a positive development and smiled. Nothing would get me down today.

The rest of the day was waiting and drowsy infusion, followed by a bus ride and train ride. The diner planned by Marika in town was less of a success. She wanted to meet me in the station and I was visibly tired and not really in the mood. Her expecting smile changed everything and we celebrated a little with pizza. I went to sleep early after enjoying the cold autumn evening.

NLR indicator

The neutrophil-to-lymphocyte ratio (NLR) is an independent factor for overall survival (OS) in patients with metastatic melanoma, whether they receive targeted therapy or immunotherapy. In a retrospective analysis performed in patients treated at a single institution, Overall survival was markedly improved in patients with an NLR <5 at a median of 14.8 months compared with those who had an NLR >5, in whom the median OS was 5 months, according to research presented by Elizabeth Blackley, MD, at the 2017 ESMO Congress.

My NLR was 3.4 when my treatment started and is now 2.2. 

As there is nothing written about results of immunotherapy for Mucosal Melanoma with metastasis in the bones (stage IV-C) patients like me, this is one of the first really tangible positive indicators. Yes!

Reference article.

The break of dawn

Awakening is but a moment,
an instant, and it’s gone

What happens is a miracle,
a stir, a hesitation of life

Glorious is the first breath,
so fresh, felt consciously

It’s a moment to cherish,
powerful, it invigorates

To break with the past,
a fresh chance, for change...

Time....

Time has lost its meaning in defining me,
also in deciding my happiness.

Life stretches and compresses.
No time involved.

Just: now.