The scan yesterday appeared to be clean. There is always a chance that something small went unnoticed. The detailed report should uncover that but it always includes statements which are conservative. The report will never say: ‘You are clean! congratulations!’ Better stick to the happy expression on the face of my oncologist.
Hope for complete recovery drives me to stay motivated and handle inevitable setbacks. Every 3 months a scan is made and many patients get anxious. I have come to accept the blips caused by metastasis. I have to admit, it’s been a while that a new one appeared, even the false alarm in my lungs.
Acceptance, patience, expectations, confidence, desire to recover fully. All are supported and fired by hope. Depression caused by constant pain undermines hope. It clouds or narrows the mind and stops you from undertaking new things. All these feelings and emotions are not easy to manage. With a still mind, trained by breathing and meditation, one can take a step back though.
Taking a step back is required to realize the tricks the mind plays. How to handle the situations is what can be influenced, not the sickness itself. As I wrote earlier, doing the right things will provide peace of mind that you are doing everything possible to get healthy. It’s important to make constructive decisions how to handle news, and not fall back in old trusted patterns.
Friday, October 04, 2019
Wednesday, September 18, 2019
Doing the right things
Last week I caught a cold which turned into something nasty and infected my lungs and sinuses. Having lack of sleep from pain in my shoulders, I thought can it get any worse? Barking away all night with a deep dry cough caused painful spasm jolts in my shoulders. I just had to get up and walk around until the itch dissipated.
I listened to soothing music and listened to talks of Sadhguru. One talk caught my attention as he answered questions on how to fight cancer. He turned the question around deftly and said why fight? When you want a flower to bloom, do you fight the earth to make it grow? Take the fight out of it and make the experience pleasant.
It reminded me again that the goal is not to get better, or to be cured. The goal is to have a pleasant experience in whatever you do. So make the struggle with pain and recovery a pleasant one, as much as you can of course. Pain is never pleasant. Do the right things, have patience in continue doing them. Time passes, and the body heals itself with help of medicines.
This message needs repeating. It’s important to apply it in all aspects of life, not only when you’re sick. Practice it when you feel well and it’s easier when you don’t have the energy or will due to pain. Doing the right things sounds so simple, but it is the foundation of happiness.
I listened to soothing music and listened to talks of Sadhguru. One talk caught my attention as he answered questions on how to fight cancer. He turned the question around deftly and said why fight? When you want a flower to bloom, do you fight the earth to make it grow? Take the fight out of it and make the experience pleasant.
It reminded me again that the goal is not to get better, or to be cured. The goal is to have a pleasant experience in whatever you do. So make the struggle with pain and recovery a pleasant one, as much as you can of course. Pain is never pleasant. Do the right things, have patience in continue doing them. Time passes, and the body heals itself with help of medicines.
This message needs repeating. It’s important to apply it in all aspects of life, not only when you’re sick. Practice it when you feel well and it’s easier when you don’t have the energy or will due to pain. Doing the right things sounds so simple, but it is the foundation of happiness.
Saturday, September 07, 2019
Wonderful!
On Thursday I went to see my oncologist, joined by my wife. I explained the nurse my pain levels and location. My wife went on to provide details where the questions became too complex. All this in Japanese.... they wanted to know if my pain had anything to do with the change in treatment interval.
Meeting the doctor, he and the nurse were all smiles, including my wife. Only I was not happy due to my chronicle lack of sleep. Blood test results were perfect, except for signs of inflammation. I knew that! So off I went for a nice soba lunch, and another infusion. The next morning started with yoga, and pain treatment. After another nap I still felt groggy from the medicines.
I got new medicines to help me sleep and got involved in the remote discussions regarding work issues. Lucky I could escape from the stress and could focus on my health. My wife was busy so I had a nice diner with my daughter, playing uno, having French fries, ice cream, and all other delicious things we could find on the menu. I slept early, at 8pm!
This morning I felt completely different. I could even say I felt great! Working with the plants, clearing up old bushes while drinking tea and a croissant on the terrace. Keeping the mosquitos at bay and listening to the crickets, birds and singing children passing by. Pain is under control.
Stress from retirement next year flared up, as our HR shared many interesting offers: develop project delivery structure in Bio economics, restructure Japan team in India, restructure Security business, etc. Interesting in itself but not sufficient to support my family. I informed my bosses, who told me they would discuss a contract structure upon return. No need to worry.
The mind is your best friend and your worst enemy. Listening to the Gita and Upanishads puts everything’s in perspective again. My reaction to tough periods needs to be steered by a mind which is in contact with Him, part of Him, and in contact with my wife and children. We are going though this together, and as such my reactions should help us all.
Peace of mind is coming back, depression fades, awareness of happy moments returns. Wonderful!
Meeting the doctor, he and the nurse were all smiles, including my wife. Only I was not happy due to my chronicle lack of sleep. Blood test results were perfect, except for signs of inflammation. I knew that! So off I went for a nice soba lunch, and another infusion. The next morning started with yoga, and pain treatment. After another nap I still felt groggy from the medicines.
I got new medicines to help me sleep and got involved in the remote discussions regarding work issues. Lucky I could escape from the stress and could focus on my health. My wife was busy so I had a nice diner with my daughter, playing uno, having French fries, ice cream, and all other delicious things we could find on the menu. I slept early, at 8pm!
This morning I felt completely different. I could even say I felt great! Working with the plants, clearing up old bushes while drinking tea and a croissant on the terrace. Keeping the mosquitos at bay and listening to the crickets, birds and singing children passing by. Pain is under control.
Stress from retirement next year flared up, as our HR shared many interesting offers: develop project delivery structure in Bio economics, restructure Japan team in India, restructure Security business, etc. Interesting in itself but not sufficient to support my family. I informed my bosses, who told me they would discuss a contract structure upon return. No need to worry.
The mind is your best friend and your worst enemy. Listening to the Gita and Upanishads puts everything’s in perspective again. My reaction to tough periods needs to be steered by a mind which is in contact with Him, part of Him, and in contact with my wife and children. We are going though this together, and as such my reactions should help us all.
Peace of mind is coming back, depression fades, awareness of happy moments returns. Wonderful!
Tuesday, September 03, 2019
Feeling blessed
The last months have been different. The treatment has killed the cancer cells, and I constantly think that I should feel healthy. This belief appears logical right? I have been fighting for more than 2 years for clean scans. Then why does my body hurt all the time? I never felt this way the last 2 years.
As I wrote, I have to accept it, be patient and be confident in my recovery. Unexpected pain is apparently part of recovery. This acceptance is the basis of finding purpose in life as a cancer survivor. Side effects of radiation and immunotherapy can be permanent. The effects are not documented as the treatment is too new.
One way to help accept that I need time away from office to recover is to find the benefit of taking a step back. Work provides me a chance to forget about the recovery process, and time off is obviously meant to enjoy my hobbies. The mind never stops, and I have learned to direct it at useful things instead of trying to make it stop.
Work has provided me the much needed change of focus for my mind, a change of mind so to say. The same is now happening at home when I need a break to treat my pain and do the strengthening exercises. I think over the difficulties I face at work and the solution presents itself and I write mails immediately to share the idea. The mind then loses interest in work, and I can enjoy my time off.
That’s it! I now enjoy the time to recover at home, and many a times need it to resolve complex issues. I have to admit that I was able to do this at work before I became sick, and miss that professional capability.
I am mourning the loss of my health and my energy at work. I feel depressed and tears come when the endless pain is keeping me awake at night. But when the sun rises again, I learn to appreciate this new balance. It’s what motivates me to become strong again and get ready for a beach holiday with my family and play in the breaking waves.....
As I wrote, I have to accept it, be patient and be confident in my recovery. Unexpected pain is apparently part of recovery. This acceptance is the basis of finding purpose in life as a cancer survivor. Side effects of radiation and immunotherapy can be permanent. The effects are not documented as the treatment is too new.
One way to help accept that I need time away from office to recover is to find the benefit of taking a step back. Work provides me a chance to forget about the recovery process, and time off is obviously meant to enjoy my hobbies. The mind never stops, and I have learned to direct it at useful things instead of trying to make it stop.
Work has provided me the much needed change of focus for my mind, a change of mind so to say. The same is now happening at home when I need a break to treat my pain and do the strengthening exercises. I think over the difficulties I face at work and the solution presents itself and I write mails immediately to share the idea. The mind then loses interest in work, and I can enjoy my time off.
That’s it! I now enjoy the time to recover at home, and many a times need it to resolve complex issues. I have to admit that I was able to do this at work before I became sick, and miss that professional capability.
I am mourning the loss of my health and my energy at work. I feel depressed and tears come when the endless pain is keeping me awake at night. But when the sun rises again, I learn to appreciate this new balance. It’s what motivates me to become strong again and get ready for a beach holiday with my family and play in the breaking waves.....
Sunday, September 01, 2019
Patience and confidence
In April I had a sudden attack of muscle cramps in my arms and shoulders. That’s now almost 5 months ago. What started as a painful nuisance, slowly deteriorated in frozen shoulders. Everything I tried made it only worse. Small accidents reversed progress, sleepless nights became the norm and made me loose confidence.
As I wrote, my oncologist wasn’t sure about the cause and gave me painkillers. Confidence however didn’t return, and I lost strength and resilience. My mind lost its edge and soon I was visiting a physiotherapist and a chiropractor. Medicines to help recover from nerve pain and muscle cramps just suppressed symptoms.
Only during the holidays in August did I feel something change. I was able to stretch more and more. I felt lucky that I had been able to establish regular yoga sessions after I became 50, which I started using as a benchmark. I could kind of sense how far away I was from my normal full stretch.
Both in the clinics and at home I gradually pushed myself through the pain. Muscles had become weak and stuck, and needed a change of posture to get them operating again. Not pleasant, but the result was that I could find better positions to sleep, followed by better rest.
I am now resting one or two days before I exercise and stretch again. The intestines and sinuses are still regularly inflamed by Opdivo, which makes me extend the period of rest. Work stress mixed with the summer heat which feels like 35-40° makes progress very slow.
My body needs time to recover. All I need is patience and confidence!
As I wrote, my oncologist wasn’t sure about the cause and gave me painkillers. Confidence however didn’t return, and I lost strength and resilience. My mind lost its edge and soon I was visiting a physiotherapist and a chiropractor. Medicines to help recover from nerve pain and muscle cramps just suppressed symptoms.
Only during the holidays in August did I feel something change. I was able to stretch more and more. I felt lucky that I had been able to establish regular yoga sessions after I became 50, which I started using as a benchmark. I could kind of sense how far away I was from my normal full stretch.
Both in the clinics and at home I gradually pushed myself through the pain. Muscles had become weak and stuck, and needed a change of posture to get them operating again. Not pleasant, but the result was that I could find better positions to sleep, followed by better rest.
I am now resting one or two days before I exercise and stretch again. The intestines and sinuses are still regularly inflamed by Opdivo, which makes me extend the period of rest. Work stress mixed with the summer heat which feels like 35-40° makes progress very slow.
My body needs time to recover. All I need is patience and confidence!
Friday, August 23, 2019
Turning a page
2 years of Opdivo treatment have passed and most traces of metastatic Melanoma activity have been removed. This is great progress so we discussed with the oncologist how to proceed. He mentioned the option to continue the treatment with 2 weeks interval or to increase the interval to 4 weeks and wait for the next scan to decide on how to proceed after that.
The benefit of the latter is that it might alleviate the continuing shoulder pain caused by inflammation and related nerve and muscle cramps. This is recorded to be a possible side effect, so I am happy that some action is now taken to get that under control.
The other benefit is that I can start having a bit of a life without having to go for treatment every other week, and reserve the weekend afterwards for possible side effects. Having a change in treatment is also is a tangible sign of progress, which makes a lot of my family and friends happy.
Truth being said, the progress is so slow and the shoulder pain has lasted for so long that mentally it’s hard to be cheerful and turn a page. After 2 weeks of summer holidays I have come to realize however, that if I don’t accept this change as a milestone what will?
I therefore decided to start planning hikes and day trips on Saturdays, and my daughter is looking forward to join. This change in spending my weekends is a clear break from treatment centered planning. (I.e. only go if I have no treatment and spare energy)
These trips with my daughter or with friends will generate a new lust for life!
The benefit of the latter is that it might alleviate the continuing shoulder pain caused by inflammation and related nerve and muscle cramps. This is recorded to be a possible side effect, so I am happy that some action is now taken to get that under control.
The other benefit is that I can start having a bit of a life without having to go for treatment every other week, and reserve the weekend afterwards for possible side effects. Having a change in treatment is also is a tangible sign of progress, which makes a lot of my family and friends happy.
Truth being said, the progress is so slow and the shoulder pain has lasted for so long that mentally it’s hard to be cheerful and turn a page. After 2 weeks of summer holidays I have come to realize however, that if I don’t accept this change as a milestone what will?
I therefore decided to start planning hikes and day trips on Saturdays, and my daughter is looking forward to join. This change in spending my weekends is a clear break from treatment centered planning. (I.e. only go if I have no treatment and spare energy)
These trips with my daughter or with friends will generate a new lust for life!
Saturday, July 13, 2019
History update
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 tumors.
Apr’19 : Blood is normal. CT-scan showing same continued progress. Some spots in the lung require PET-scan.
May’19 : PET/CT scan shows that all activity in the body has cleared except for a spot in the maxillary sinus.
Jul'19 : CT scan shows all is clear. The detailed report is also all clear, only some remaining traces in the bones.
Sep'19 : Start Opdivo with 4 weeks interval. Next scans in Oct'19 and Jan'20 to check the impact.
Sep'19 : Start Opdivo with 4 weeks interval. Next scans in Oct'19 and Jan'20 to check the impact.
Dec'19 : End Opdivo treatment. Bloodtest every 2 months, CT-scan every 4-5 months.
Jan'20 : Blood is normal. CT-scan, all lesions are shrinking.
Jun'20 : Blood is normal. CT-scan, all lesions continue shrinking
Dec'20 : Blood is normal. CT-scan, tumor in brain appears to be growing, MRI in Jan'21
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