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.
Thursday, November 29, 2018
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!
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.
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.
Tuesday, October 09, 2018
Worries and itches
What if it gets worse? When will it begin? How will it feel? How to prevent? How to make it easier to bear? How to reduce sorrow of my loved ones? Where will I go? What if?
I am being haunted by worries, as I cannot sleep. My left side of the nose is so itchy, it seems some cat hairs have gotten stuck in it, or I have some sort of allergy. No idea why it suddenly starts. I kind of started to believe, or hope, that my health has stabilised and now this. It's driving me wild. I can't stop my mind, it simply keeps on going in circles, like a vulture.
This writing brings a kind of serene silence in an otherwise noisy space, brimming with thoughts. I try to understand how Iris Murdoch describes and analyses it. Not easy and certainly not using simple language. I fall asleep with it, and that was the reason I put her book at my bedside. I also hoped that there would be some hidden nuggets of wisdom, waiting for me to be discovered. Perhaps.
I have flushed my nose and sinuses with salt water, using the nozzle I used for months after surgery. It somehow relieved the unreachable itch inside. The itch is also caused by nerves growing back. This itch is deep in the skin and tissue, and it cannot easily be described. It is a sign of healing, which is about the only comfort I have.
It's 1am now, and I am growing sleepy while writing and drinking cups of green tea. Autumn is here, and the evenings are getting colder. Its a blessing after the humid summer heat. Let this tired body find peace in sleep as I want to bring my daughter to the train tomorrow at 6:30 and I want to go to work at 8:30.
Why I have this compulsion? To get on with a more or less normal life, free from spending time resting and idling. Rest is what I need, but it I also need to find meaning and purpose as life continues, balancing body and mind. I am truly blessed these moments of worry are now sporadic, but they still sneak up on me. I am glad it has now passed. Goodnight.
I am being haunted by worries, as I cannot sleep. My left side of the nose is so itchy, it seems some cat hairs have gotten stuck in it, or I have some sort of allergy. No idea why it suddenly starts. I kind of started to believe, or hope, that my health has stabilised and now this. It's driving me wild. I can't stop my mind, it simply keeps on going in circles, like a vulture.
This writing brings a kind of serene silence in an otherwise noisy space, brimming with thoughts. I try to understand how Iris Murdoch describes and analyses it. Not easy and certainly not using simple language. I fall asleep with it, and that was the reason I put her book at my bedside. I also hoped that there would be some hidden nuggets of wisdom, waiting for me to be discovered. Perhaps.
I have flushed my nose and sinuses with salt water, using the nozzle I used for months after surgery. It somehow relieved the unreachable itch inside. The itch is also caused by nerves growing back. This itch is deep in the skin and tissue, and it cannot easily be described. It is a sign of healing, which is about the only comfort I have.
It's 1am now, and I am growing sleepy while writing and drinking cups of green tea. Autumn is here, and the evenings are getting colder. Its a blessing after the humid summer heat. Let this tired body find peace in sleep as I want to bring my daughter to the train tomorrow at 6:30 and I want to go to work at 8:30.
Why I have this compulsion? To get on with a more or less normal life, free from spending time resting and idling. Rest is what I need, but it I also need to find meaning and purpose as life continues, balancing body and mind. I am truly blessed these moments of worry are now sporadic, but they still sneak up on me. I am glad it has now passed. Goodnight.
Saturday, October 06, 2018
Status of the metastasis
Every scan there is an update on the progress of recovery. Its quite hard to understand the overall picture, so I summarised it as follows:
Friday, October 05, 2018
At age 4 the world was waiting to be discovered.....
Yesterday I had a CT-scan and the contrast fluid made me glow from top-to-toe. Some allergic reaction in nose and throat was a concern but they eventually let me go. The sweet nurse spoke fluent English with British accent as she had studied in England. While waiting for hours in queues, I sneezed and sneezed for all to hear. The scan shows no surprises according to my doctor. The detailed analysis will follow in 2 weeks. Blood test was also normal also so I had my 29th Opdivo infusion in the afternoon.
Yesterday's routine: a quiet 10min walk to Mitaka station, a 45 minute train ride by Tozai-line to Tsukiji station where the fish market is, a 10min walk to the hospital, queueing for the insurance document check, queuing for the blood test, queuing for the CT-scan document check, queueing for the scan, queueing to see my doctor, queueing to get lunch, queueing to get my infusion, queueing to complete documentation, queueing at the cashier, queueing for the 10min bus ride to Tokyo station, the 30 min train ride to Mitaka and then a quiet walk home. I am glad I live in Tokyo where no one jumps queues.
This week Dr Honjo received the Nobel prize as he discovered 20 years ago that the immune cells (T-cells) have a blocker (PD-1) which the smart cancer cells activate. The developed Opdivo quietly does its work to switch the blocker in the T-cells off so they can trace and kill the tumours cells.
This consumes most of my energy. My sister said the aging process may have set in earlier for me, hence the similarities with her tiredness and lack of energy to undertake new things. Apparently I alway had the false notion that getting older would pass me by, and that I would just start pushing daisies bursting with energy. I wonder why it never dawned upon me what aging actually would do to my body.
Anyway, I don’t plan to think about that too much. It comes day by day, and age is s mindset. Being young at heart means accepting change immediately as ideas will pop up how to handle it. Sticking to trusted patterns and comfortable ways is tempting but creates a flawed sense of security. The recent earthquakes and typhoons reminded me and my family once again to be ready for the worst, always.
I cherish the days my parents guided me down the stairs of my grandma’s house. Don’t I look like my dad?
What they went through to raise 5 kids and prepare us for what the world has to offer....
Yesterday's routine: a quiet 10min walk to Mitaka station, a 45 minute train ride by Tozai-line to Tsukiji station where the fish market is, a 10min walk to the hospital, queueing for the insurance document check, queuing for the blood test, queuing for the CT-scan document check, queueing for the scan, queueing to see my doctor, queueing to get lunch, queueing to get my infusion, queueing to complete documentation, queueing at the cashier, queueing for the 10min bus ride to Tokyo station, the 30 min train ride to Mitaka and then a quiet walk home. I am glad I live in Tokyo where no one jumps queues.
This week Dr Honjo received the Nobel prize as he discovered 20 years ago that the immune cells (T-cells) have a blocker (PD-1) which the smart cancer cells activate. The developed Opdivo quietly does its work to switch the blocker in the T-cells off so they can trace and kill the tumours cells.
This consumes most of my energy. My sister said the aging process may have set in earlier for me, hence the similarities with her tiredness and lack of energy to undertake new things. Apparently I alway had the false notion that getting older would pass me by, and that I would just start pushing daisies bursting with energy. I wonder why it never dawned upon me what aging actually would do to my body.
Anyway, I don’t plan to think about that too much. It comes day by day, and age is s mindset. Being young at heart means accepting change immediately as ideas will pop up how to handle it. Sticking to trusted patterns and comfortable ways is tempting but creates a flawed sense of security. The recent earthquakes and typhoons reminded me and my family once again to be ready for the worst, always.
I cherish the days my parents guided me down the stairs of my grandma’s house. Don’t I look like my dad?
What they went through to raise 5 kids and prepare us for what the world has to offer....
Thursday, August 23, 2018
26th anniversary !
Today I am back in the hospital for my bi-weekly infusion. No 26 means I passed the 1year mark of being under treatment. It feels great to have received the gift of life and every infusion feels like a dose of life elixir. Nothing compares to this.
As I mentioned many times, my mind is now well organized and this supports my recovery. Keeping my body fit is a challenge as I am lazy by nature. Nothing better than a walk in the park or along the sea. So we decided to drive to Izu every month and spend 2 days near the ocean.
It’s those small adjustments which make life wonderful. It’s so easy to go on. Also at work, I have passed a certain point that I will travel again. First trip to Singapore, 7 hours, day travel, single hop. Can be done! Life settles down, new patterns emerge, a new hobby brings deep satisfaction.
Thank you for your support, wherever you may be. Your thoughts and prayers help, every time. Thank you
As I mentioned many times, my mind is now well organized and this supports my recovery. Keeping my body fit is a challenge as I am lazy by nature. Nothing better than a walk in the park or along the sea. So we decided to drive to Izu every month and spend 2 days near the ocean.
It’s those small adjustments which make life wonderful. It’s so easy to go on. Also at work, I have passed a certain point that I will travel again. First trip to Singapore, 7 hours, day travel, single hop. Can be done! Life settles down, new patterns emerge, a new hobby brings deep satisfaction.
Thank you for your support, wherever you may be. Your thoughts and prayers help, every time. Thank you
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