Purpose of this blog

My name is Cor and this is my story dealing with mucosal melanoma (MM) in my nose which was diagnosed on 10 Jan 2017. I am married and have 2 kids, aged 22 and 12. I write and update this blog to reach out to all my loved ones far away with updates and my state of mind and also to share information with other patients. Summary of what happened so far:
6 Jan'17 : surgery in Singapore to remove a polyp, Melanoma is discovered
16 Feb'17 : maxilliary sinus and nose surgery in Singapore to remove Melanoma from nose and left sinuses
1-19 Apr'17 : proton beam radiation (5 sessions) in Kashiwa Cancer Center Tokyo
1 May'17 : starting work again (part-time)
25 May'17 : MRI scan finds possible metastasis in the spine
1 July’17 : Move permanently to Tokyo for treatment.
7 Aug'17 : MRI/PET scan, cancer in sinus and nose is gone! Melanoma has metastasized in the spine and other bones
9 Aug'17 : Melanoma specialist in Tsukiji Cancer Center proposes treatment for bone metastasis: one-shot strontium drip, followed by check-up after 3 months and then decide on Opdivo. Admission tests: blood, X-ray, CT-scan, ECG test.
14 Aug'17 : Strontium IV is not suitable for me as I have no pain. Also because the short/long term side effects are bad for the bone marrow.
21 Aug'17 : Start 3 months immunotherapy. 6 infusions of Nivolumab (Opdivo)
30 Oct'17 : CT scan, priliminary diagnosis of treatment effect, continue with Opdivo as there are many grey spots (tumours).
1 Nov'17 : Decided to start a new life. Erasing the past in my mind and focus on living life as it should be lived: once. Enjoy the small things.
13 Nov'17 : CT-scan shows all tumours have reduced in size: brain, liver, left kidney, spleen, spine, etc. Start 2nd set of 6 infusions.
25 Jan'18 : CT scan shows shrinking tumours, ongoing repair in bones and a new swollen lymph node. Start 3rd set of 6 infusions.
1 Feb'18 : Start working full-time. Energy is restored.
5 Apr'18 : The detailed report of the CT-scan is not in yet but the oncologist said it looks good.
10 Apr'18 : My radiologist is very positive that primary site is clean. Metastasis is also shrinking continuously, so he is convinced I will make it.
19 Apr’18 : Detailed CT-scan report, infusion no18. Continue infusions for another 1.5 year (probably).
11 Jul’18 : CT-scan looks great. My radiologist is so happy to see us and says a miracle has happened.
18 Oct'18 : Blood is normal. CT-scan shows continuous shrinking of tumors, infusion no30. Keep on going!
Jan'19 : Blood is normal. CT-scan shows continuous shrinking of tumours.

Saturday, February 02, 2019

Background noise

It’s been a remarkable start of the year. My sister and niece visited, bringing coffe, candy and love. Their week-long presence was great yet exhausting. I pushed myself beyond what I could do before. The empty feeling after their departure was filled with smiles from my wife and daughter, enjoying the candy and lots of fond memories.

Somehow I had gotten over an invisible barrier which can be described as habitual rest. This habit had become a trusted ally in battling unexpected side effects, which I could thus handle at any time. Having my sis and niece around me most of the time changed a narrow recovery focus to enjoying doing stuff together. This sudden widening of my spectrum of activities, made me realize I could actually handle it. My body had recovered more than I had thought.

Now it’s 2-3 weeks later, and I am having a tough time with headaches, pain in joints and muscles. Under normal circumstances these are merely annoying as a kind of background noise. This week I missed 2.5 working days because of combined attacks of heavy head, surging heartbeat, gastritis, and stupid stress from work. The background noise has caused other side effects to stack up.

My capacity to think coolly was affected by all this. Every new event was stacked on top of everything else, which normally would not happen. In short: I need to find a way to reduce the background noise caused by pain. When I recall my comparison of cancer to other chronic illnesses, pain management is a very important part of treatment. Negating this can cause depression.

I will need to stay more active, but how to do that when energy levels and winter temperatures are natural demotivators? Will power is again the key success factor. It needs to be fed with simple motivation. A useful exercise for my mind the coming weeks at home and at work. Some initiatives I am working on could be a source of passion if I change my mindset. Let’s give it a go!

Sunday, January 06, 2019

Wisdom of a teenager

I am now 16mths on intensive and aggressive treatment which has reversed the damage of metastasis.   On NewYears morning, I was hit by the fact that the year ahead would be completely filled with hospital visits, infusions, side effects and regular scans. Another year of survival existence was a depressing thought.

I discussed this with my daughter over breakfast and she answered she had not enough wisdom, as she was not old enough. I didn’t agree with that, and said she had lots of experience living in Singapore, India and Japan, and that I would very much like to hear the wisdom of a 13 year old.

So she thought a bit and answered: survival is like bland tea. You need to add sugar and milk to make it tasty. So why don’t you live life a little by spicing it up and overcoming your fears? I wrote our conversation down, for her to keep, and to appreciate her support to me, and being my motivation to become healthy again.

That loving and wise advice is pulling me out of a bout of depression. Action is the only thing I believe in, so I started my 10,000 step walks again, visited my in-laws to help pruning the garden and had a movie night with my daughter. I feel exhausted, but more alive than in a long time. Thank you Marika!

Thursday, December 27, 2018

2019

It’s the season of singing carols, watching movies, eating good food, visiting family and above all thank Him for everything we received. It’s amazing how easy it is to forget that last important bit. 2 years ago I couldn’t travel due to the infections, and was home alone while Yuka and the kids were in Thailand.

2 years later it’s all back to normal, although flying is still not a good idea. Work is at 60% and life about the same. My wish for the coming year is to reach 100% life again, with hiking, meeting people and hobbies.

Work will be different, as it’s the last year full-time under the labor laws of Japan. May 2020 I will take a step back and pass the baton to the next generation. I will go on contract and do projects. Since that is what I already do, there will not be much change.

My New Years resolutions (新年の抱負 Shin'nen no hōfu) are in line with the above, and I will put in my best effort to make it happen! No alcohol, no stress and lots of exercise. Let’s pray our wishes are heard, and let’s hope they will come true. All the best in 2019!

Sunday, December 16, 2018

Being ready and prepared for side effects

I was reading about the changing treatment required for fellow patients in my Mucosal Melanoma fb group. She had Opdivo like me for a year and suddenly tumors in liver and lung started to grow. Now she is going through chemo therapy and radiation. It makes me aware not to underestimate my situation. Be prepared and rest well.

Other patients talk about loss of memory due to immunotherapy treatment. Difficulties adapting to this as 50-60-70 year olds sounds very much the same as what my father goes through, and he is 93. I wrote this as a comment:
“I am getting foggy (a detached mind) every 2-3 weeks. It passes after I go home and rest. I just had my 34th bi-weekly Opdivo infusion. I can’t do multi talking as I used to. One task at a time, and follow-up/through is missing and easily slipping. It’s frustrating. I now accepted it and my staff support me a lot. At home my wife has to repeat things, and I forget appointments. She reminds me patiently but has another kid in the house now. I got mad at a times, with myself mostly, and now just say ‘yes mam’ with a smile and we all live with it now. I am 58 and prepping my mind with games like sudoku and language lessons.”

Again, just being prepared and accepting the side effects.
On the other hand, today I went shopping with my wife, looking for Christmas presents and realizing both that we have everything we could ever wish for. Shopping like this has been a long time ago, actually 2 years, before I was diagnosed. Just relaxed and without any thought about being sick. We are blessed with this progress!

Thursday, November 29, 2018

Brain fog, dizzy, disconnected

Aaah, I thought I was ready for some serious work related stress! I thought I could engage again and lead Engineering work automation change management, digital transformation, new business models, etc etc. My passion for this stuff is tremendous, as is the resistance to change in every corner of our company.

So I have strange symptoms of dizziness, disconnection, strange lapses of presence and so on. When I explained this to my oncologist he nodded and suggested that it just might be related to work stress. My resistance to continue trying to work 5 days a week from my desk, and again pull my weight everyday started to crumble. I nodded in agreement and wrote my bosses a note to have a chat about this next week Monday.

So there you have it. I am facing the reality of the imbalance between my super strong spirit and my struggling body. It sounds so simple to write, but when I realize I am in a deep dip it’s already too late. Not that the damage to my body is irreversible, no, but the damage to my confidence has been done.

And that’s where the darkness starts at the bottom of an empty well. Slippery walls surround me and there is no light up there. The only strength I have left in me is my spirit. I go on my knees again to pray and thank Him for that gift.

So, I need to climb out again, as so many times before after facing reality of my current limitations. I say current, as my hope of recovery is strong and unwavering. There is light up there I realize, as soon as I close my eyes, stop my will, and start enjoying the moment of peace. It’s not imagination, it’s real, it’s visible and I can feel the warmth of the sun shining straight down on me.

So, another setback has come and gone. Staying strong and finding strength inside in a still mind is what heals all wounds. Recovery and healing only happens in a body which is at rest and is not fighting battles which others can fight. I need to remind myself of this, and not slide down the slippery slope of work induced stress. My basic integrity to do my part at work is getting in the way again, and again.


Monday, November 19, 2018

Stages of battle and recovery

Before I was diagnosed with cancer, I led a normal life. A definition for normal cannot easily be given other than itt describes the state of mind you are in. Activities are planned, delayed, enjoyed and remembered. All without any sense of urgency or time constraint because why worry? There is so much time to enjoy life isn’t it?

Well, that phase came to an abrupt end when the surgeon said that Melanoma was found in the tissue removed from my nose. Slowly I started to realize that a phase of my life had come to an end. A phase which everyone takes for granted and which one only appreciates fully once it’s gone.

I entered a phase of survival. Everything I did, every plan I made had this singular goal. All socializing, enjoying, loitering, etc had suddenly gone. Something had come in its place, and that something was completely new. When reading experience of other patients, it can be read that life is never the same after diagnosis.

A year of studying options of treatments, undergoing treatment, fighting and recovery passed by without realizing it. Everything was happening in a blur, a fog, and without many memories. Somehow the immunotherapy treatment worked for me and when 2018 came about, I felt a deep sense of relief. I had never thought I would be able to think and plan beyond the next week and month.

Survival made place for hesitation to plan a trip, a short holiday, a meeting and so on. I realized i had enough energy to work almost full time again. Survival faded out , moved to the background very gradually, unnoticed and a new phase started where I found purpose in work again. Passion did not return but at least I could feel a sense of satisfaction I was contributing again. Good days came and went, and I started to get used to longer periods of well-being.

I still did not have enough energy to enjoy socializing, travel and hiking. All that had to wait another 9 months of recovery. But, like today, I realize that I start to feel bored with reading, painting the model of a yeacht, walking and work. I need more. I feel the sense of hunger for adventure again. Not the passion to change the world like I had felt in my travel and work, but a need to achieve a deeper sense of fulfillment.

A new phase has arrived. A phase of returning back to normal life. This time normal has a completely different meaning. Normal has a dimension which is linked to the passing of time. Normal now means living in the moment and enjoying everything I will undertake. This new phase brings the urge to study Japanese, to go watch a movie, to go to concerts, go hiking, and so on. It’s a very big relief again that I am given the chance to give normal life a new start!

Wednesday, October 17, 2018

The dilemma and green valleys

Yesterday we visited dr Zenda, the oncologist responsible for my Proton Beaming Therapy. It’s the regular checkup every 6 months. He is a gentle giant in his field and we shared the joy of Dr Honjo’s Nobel prize. He informed us smilingly that my miracle had made the department decide to treat all Melanoma stage VI patients, followed by Opdivo treatment. Until now they had only treated patients without metastasis. Yippie!

He went on to say that since the treatment was working, that the next phase of treatment had to be carefully considered. There is still no success reference which can be followed. Tomorrow I will visit dr Namikawa, the oncologist responsible for my Opdivo treatment, and I hope to hear a bit more about the actual healing progress in the detailed CT-scan report.

I was informed yesterday that my body cannot handle continuous Opdivo infusions for many years. Starting Opdivo again after treatment has ended may result in a different reaction in my body like acute organ failure. (Diabetes, Hepatitis etc). So there are 2 possible scenarios to end the treatment: reduce the amount of medicin per infusion, or increase the period between infusions. Tumors may start to grow again when the infusions are reduced to fast, so the progress of healing will continued to be monitored using CT-scans every 3 months.

Survival rate of Proton beaming is 1 in 2. Success ratio of Opdivo is 1 in 3. A new treatment is becoming available now in my hospital. It’s personalized gene mutation analysis, with targeted enzyme treatment for mutated genes. It looks very promising. Hope of full recovery is ever growing. It’s still a long and winding path on a narrow mountain ledge, but I can now see the green valleys on both sides.

I trust in providence and the protection of my God. Thank you for all the prayers, thoughts, wishes, words of support, sending dropjes with colleagues and all messages. It all helps me to stay flexible and resilient. It’s been 1.5 year since proton beaming, and more than a year of Opdivo infusions. As they say, I am living on borrowed time, and owe my life to Dr Honjo’s discovery.