The 10 radiation treatments spread over 2 weeks are done! It’s all a blur now that I look back, but I do remember the desperation I felt every morning. Getting up and eat in time before nausea would stop me. Work became harder and harder, so I stopped in the second week. The trip to the hospital by train lasted more than an hour and being stuck while feeling sick was stressing me out.
I managed except for the near last day. Just before I had to leave home I became so sick, I cried while waiting for it to reside. Our sweet cats visited me and their loud miauws really pulled me out of my misery. I rushed to the hospital where I realized I had to overcome nausea while being pinned down by my face mask. Man, I have not felt more miserable ever…
Now that it is all over, I can deal with my cooked brain, red burnt skin, humming ears, falling hair, and annoying dancing black spots in my right eye. Appetite is gone, so I find relief in Japanese powders to kickstart my metabolism. I need that to make the immunotherapy protect me from spreading metastasis, like it happened in 2017 after Proton Beaming. Fear is hiding everywhere…
Living day by day has returned, and is saving me mentally. I remembered how I had worked my way through the nights after surgery, dealing with pain and fear of the unknown. No need for scenarios, just one: make it through this day, enjoy small improvements, laugh when I can, make bad jokes when I can, enjoy breaks in sleeping at night and be happy when daybreak comes…
Dealing with fear is easy now. I pray for help, easing of fear and nausea, and it works! I feel so blessed with all support I get, apps of support, mails, lovely prepared meals, smiles… There is no other outcome than peace, and enjoying having my loving family and friends around me. I just need to know it and be aware of it. Not shutting them out and try to do everything by myself. Let love flow both ways…
It was a special day, celebrating the end of the week while lying still. Pinned down by the mask has become a comforting feeling. They know what they are doing, with pin-point precision. Radiation 6 is done, and only four to go. My oncologist said that I could get steroids to ease the nausea, but it would affect the effectiveness of the immunotherapy. What a choice…
After having diner on the way home, just in time to suppress the nausea, I took a bath to wash away the hospital. I wonder now why my appointment with God is again delayed. Everyone has an appointment at the end of life, and mine has been postponed several times. It feels good of course, to be able to spend more precious time with my loved ones.
Deep inside I wonder what the end will be like. It has been postponed with surgery, medicines, radiation, and will continue to be postponed using latest developments still to present themselves. Gratitude is what I feel, and humility. This is not a test of willpower, no, it’s a test of patience, trust and spirit. Walking to the radiation room, makes me feel like a lamb, ready for the end. Everything is ready, because the end is near.
But, Everything is also very ready to continue... I am ready to continue for certain! So what will it be like when the tide turns, when the scan in January shows that it hasn’t worked? What will we do? Or not do? I believe it’s time to consider deeply how I will deal with that news, 5 years after the first diagnosis.
It’s like the old cliche: ‘What would I do if I had 3 months left to live?’ Perhaps a storyboard would help me put these depressing thoughts to rest. His Peace is stronger than my fears!
The last 6 days were like an experience with a slow ticking clock. The Ipi/Nivo infusion was doing its job in killing melanoma cells but at the same time caused bad nausea, intestine trouble and jolting backaches. Everyday was a different combination, with radiation headaches coming and going. It seemed it would never end.
Today I am going for the fifth radiation, and my body feels slightly better. Halfway point! Anything positive to hang on to…
Taking part of daily life by visiting the hospital somehow grounds me in reality; sitting in crowded trains, running to catch a bus which closes its doors in front of my nose... Life continues, peoples lives continue around me. So much news appears to me completely meaningless when I see the suffering in the eyes and posture of patients and caregivers. Everyone is bravely carrying their own hidden cross.
What is this type of cancer difficult to handle, both mentally and physically. It’s sleeping for months and catches me off-guard when it appears again on scans. I somehow came to terms that this is a companion for the rest of my living days. The amazing immunotherapy developments to inactivate the melanoma cellular attack mechanism is saving me time and again.
But still… it requires a special mindset, patience, while letting Peace of God overcome my fear for the unknown. It provides for a safe haven, where I am blessed with hope. This hope is the shelter for the storm I am in.
Prayers from all of you have helped so much, and I want to thank you for that. Without you, my loved ones, it would be impossible to get through this with a stable and strong mind. I feel strong because of your continued support.
Today is the birthday of my daughter, and I feel ok enough to join the diner to celebrate. Next week my son will start work after he halted his master studies. Startup engineer for ASML, covering all semicon factories in Japan. A bright future lies ahead for both of them, and I feel so blessed to be part of it…
The first shot of 10 minutes radiation was over before I noticed. After my head was pinned down by a mask. I had to control my breathing and urges to break free. A CT-scan had to be made again to position my head. The explanation was complex and I couldn’t follow it, so while I thought the scan was still whirring away, a blue light appeared a few times.
That was it. It left me feeling light headed and while leaning over to tie my shoelaces, I felt disoriented. Talking to the radiologist didn’t help much as he told me I would loose all my hair. Cheering me up would have helped a bit. Anyway, I had infusions on my mind and went on to find the office of my trusted dr Namikawa.
It was not his outpatient day, so he met me rather unexpectedly. I had expected his nurse to tell me the results of the blood test. The blood results were very good, even my anemia had disappeared with consistently taking ion supplements. Body was strong from walking, yoga and (small) weight lifting. Except from my facial palsy I felt like nothing was wrong with me.
The infusions would take 3 hours! It sounded a piece of cake, but after I had slept through the first 4 bottles, and still had 3 full ones to go I felt rather lost. The apps from my support team in Holland kept my spirits high, even though I couldn’t reply much with the IV holding my right arm down. I did have plenty of time to think about life in all it’s beauty, and how important strong, loving bonds are.
While waiting, and waiting, I felt nausea coming up and was not ready to go home. I tried to eat something and only the trusted apple juice helped keeping it down. After a short nap, I finished some more, and asked my daughter to pick me up from the station. With that motivating thought, I hopped on the bus and changed to the rapid train at Tokyo station.
Walking home in the rain, sharing an umbrella with my daughter, made me forget everything and soon I enjoyed the Japanese bath and a warm comfy bed. The side effects of Yervoy can be pretty bad, but for me the next day wasn’t too bad. Actually I woke up with the feeling nothing had happened the day before. That’s the thought I held onto, and it went pretty smooth.
Only 9 more bursts of blue light to go, and with a bit of luck the nausea won’t not be too bad…
My hope that the good progress made in the April scan would continue has been dashed.
The follow up scan in July was all clear, and it felt like a new life had started. The decision to stop Opdivo was made and after 6 months of infusions I was free from regular hospital visits. What a relief that was in the heat of the summer.
The scan made in October showed that a bunch of tumors had reappeared in the fluid inside the ventricles of the brain. This fluid, also known as cerebrospinal fluid (CSF), flows through the ventricles, around the brain (meninges) down into the spine.
As I explained in previous blog posts, the tumors in the ventricles were removed by pinpoint precision using the cyber-knife. This time this method is not an option due to the size and multitude of tumors. The only remaining treatment is full-brain radiation, combined with immunotherapy to prevent possible growth of spreading melanoma cells in the rest of the body.
Sounds like a good plan right? It does to me, were it not that this the last possible treatment. If the melanoma cells don’t react to this… This thought haunts me at night... Peace of mind comes soon after as I trust in God to guide me and make it work as he did so many times before. Let’s pray for that.
The treatment goes as follows:
Side effects are probably mild for me, including stomach upset, nausea, loss of hair, and tiredness. I plan to work in the morning to keep my mind occupied, and visit the hospital in the afternoon. Previously I stayed in a hotel nearby but that didn’t exactly cheer me up, so I will travel up and down this time (approx an hour from our house)
The next scan is planned in January, so we’ll have to sit tight till then. Christmas will be a time to reflect on the gift of life. Wish me luck, and let’s pray together for easy side effects and good results!
