On 22 Oct 2021, I was scheduled for 4.5 hour Ipi/Nivo infusion, (combined Opdivo and Yervoy) with 10 days full brain radiation. It’s target was a blob on of Metastasized Mucocal Melanoma in my CSF (Cranial and Spine Fluids) which dampens shocks inside the meninges and keeps the pressure in the brain light and stable.
The. procedure sounds and is simple. Just lie down and let it happen to you. Wait for the dreaded and feared nausea to take over your life and everything you do.
These are my experiences as I encountered them, probably not in chronological order.
Brushing teeth becomes a chore, Reaching all your teeth becomes a balancing act with a quick dash to the toilet bowl.
A 1 hour train ride to get the next radiation. That’s the duration of how long I cannot reach a toilet in the crowded Japanese subway, keeping plastic bags handy. I have no idea how the crowd around me would would react, but my best was that they would give me space to recover. A dash out of the train to the toilet was the next best option. (Note: For my first two radiation treatments in January and April I had stayed in a hotel nearby to continue working, but I’d felt lonely and the nausea was not helping me go for evening walks without tremendous force of will. So I opted for care at home after treatments, taking the ride in stride.) I changed to surface trains to be able to control my nausea and keep focus on something bright. That I had learned from my days at sea while getting my sea legs on every trip. Not knowing the l (radiation, chemo, combination?) made it hard for my doctor to decide/provide relief with steroids. After things got worse, he said it’s the first time someone is so allergic to Yervoy. Opdivo was always well accepted and had trained my immune system to clear als metastasis in my organs and bones.
Making a mistake. I sat down in the station to rest before going for the exit. Bending over to get a candy to appease my stomach resulted in s sudden urge to vomit. I ran up the escalator’s empty right steps (bless the Japanese habit to stand politely on the left,(and let rushing commuters pass by on the right). Kneeling in front of a pot in a loo in a station is the worst to imagine anywhere, except in spotless Japan. Then the urge subsided, returned, subsided, it’s just a staring game with whatever comes in view. Then the final feeling of relief that your stomach stops contracting. You get up, thank the bowl, check your knees, and walk home where its invitingly comfy.
Feeling reduced to a crumble of yourself. The center of your life become your bowels, which did not want or intend to calm down. A complete sense of lethargy starts to set in and nothing can urge you to move or use your body functions other than waiting for a next motion or other. This state of being is accompanied by a fetus position with a bowl or bag nearby in case I needed it.
Inflammation and swelling of organs. The next stage of Yervoy allergic rejection by my body was swelling of organs. It travelled through my body, starting with my stomach, the the liver, then my heart causing a sense that the end was near (more about that no my testimony blog), my lungs, (causing short breath for weeks), swollen intestines, starting severe hemorrhaging accompanied by external piles, luckily without the bleeding.
Loosing sense of when to go to the toilet. Constant leaking caused me to become insecure of myself, feeling like an old man, and staying in the vicinity of toilets for other reasons than throwing up. Emotions of incompetence and others went through my head. Dreadful…
I felt like dying. That’s the only way I can describe it. There was nothing to cheer me up, except for the loving messages from my brothers, sisters and close friends. That’s when I realized how much I relied their daily apps… but at one point even that became too much to answer every time, and I just asked them to send me some cheerful apps, with bad jokes, or funny meme’s. I knew they would understand, and they did their best…
Feeling someone deeply care for you. While just lying there for 5 days in a row, my wife kept asking me what I wanted to eat, to keep providing me the nourishment my body needed. I just asked for soup, and asked her to but the astronaut, or runner energy and protein packs. Those were easy to take in, and keep in. When I was young I also went on broth and crackers while covering from stomach upsets.
Images of helpless humans. While waiting for my turn to get radiated, I saw many beds around me with patients with a similar fate in the hospital. It reminded me that my fate wan’t perhaps the worst that could happen. I person was lying fetus position around a small basin where he throw up in without having to bring his weak body into sitting position. another my radiologist talked in comforting words, that he would have to stand only another 3 days… well 3days can be an awful long time, so the patient just groaning lay turned away.
A story I remembered so vividly. It’s about a patient in Singapore, who spent time with her husband in the bathroom, unable to control her bowel movements and vomiting. Her husband lovingly kept cleaning up around her and just stayed with her until her body calmed down. This story has stayed with me in case I had to go through a similar experience for my fist dreaded chemo. Lucky mine wasn’t as bad… But I learned a lot from the love, and support, my partner provides by simply being there and silently confuse to watch over me, worrying, encouraging to get well soon… it could break my heart to look her in the eyes too long, so I broke off and walked back to bed, determined to beat this thing.
These are my experiences as I encountered them, probably not in chronological order.
Brushing teeth becomes a chore, Reaching all your teeth becomes a balancing act with a quick dash to the toilet bowl.
A 1 hour train ride to get the next radiation. That’s the duration of how long I cannot reach a toilet in the crowded Japanese subway, keeping plastic bags handy. I have no idea how the crowd around me would would react, but my best was that they would give me space to recover. A dash out of the train to the toilet was the next best option. (Note: For my first two radiation treatments in January and April I had stayed in a hotel nearby to continue working, but I’d felt lonely and the nausea was not helping me go for evening walks without tremendous force of will. So I opted for care at home after treatments, taking the ride in stride.) I changed to surface trains to be able to control my nausea and keep focus on something bright. That I had learned from my days at sea while getting my sea legs on every trip. Not knowing the l (radiation, chemo, combination?) made it hard for my doctor to decide/provide relief with steroids. After things got worse, he said it’s the first time someone is so allergic to Yervoy. Opdivo was always well accepted and had trained my immune system to clear als metastasis in my organs and bones.
Making a mistake. I sat down in the station to rest before going for the exit. Bending over to get a candy to appease my stomach resulted in s sudden urge to vomit. I ran up the escalator’s empty right steps (bless the Japanese habit to stand politely on the left,(and let rushing commuters pass by on the right). Kneeling in front of a pot in a loo in a station is the worst to imagine anywhere, except in spotless Japan. Then the urge subsided, returned, subsided, it’s just a staring game with whatever comes in view. Then the final feeling of relief that your stomach stops contracting. You get up, thank the bowl, check your knees, and walk home where its invitingly comfy.
Feeling reduced to a crumble of yourself. The center of your life become your bowels, which did not want or intend to calm down. A complete sense of lethargy starts to set in and nothing can urge you to move or use your body functions other than waiting for a next motion or other. This state of being is accompanied by a fetus position with a bowl or bag nearby in case I needed it.
Inflammation and swelling of organs. The next stage of Yervoy allergic rejection by my body was swelling of organs. It travelled through my body, starting with my stomach, the the liver, then my heart causing a sense that the end was near (more about that no my testimony blog), my lungs, (causing short breath for weeks), swollen intestines, starting severe hemorrhaging accompanied by external piles, luckily without the bleeding.
Loosing sense of when to go to the toilet. Constant leaking caused me to become insecure of myself, feeling like an old man, and staying in the vicinity of toilets for other reasons than throwing up. Emotions of incompetence and others went through my head. Dreadful…
I felt like dying. That’s the only way I can describe it. There was nothing to cheer me up, except for the loving messages from my brothers, sisters and close friends. That’s when I realized how much I relied their daily apps… but at one point even that became too much to answer every time, and I just asked them to send me some cheerful apps, with bad jokes, or funny meme’s. I knew they would understand, and they did their best…
Feeling someone deeply care for you. While just lying there for 5 days in a row, my wife kept asking me what I wanted to eat, to keep providing me the nourishment my body needed. I just asked for soup, and asked her to but the astronaut, or runner energy and protein packs. Those were easy to take in, and keep in. When I was young I also went on broth and crackers while covering from stomach upsets.
Images of helpless humans. While waiting for my turn to get radiated, I saw many beds around me with patients with a similar fate in the hospital. It reminded me that my fate wan’t perhaps the worst that could happen. I person was lying fetus position around a small basin where he throw up in without having to bring his weak body into sitting position. another my radiologist talked in comforting words, that he would have to stand only another 3 days… well 3days can be an awful long time, so the patient just groaning lay turned away.
A story I remembered so vividly. It’s about a patient in Singapore, who spent time with her husband in the bathroom, unable to control her bowel movements and vomiting. Her husband lovingly kept cleaning up around her and just stayed with her until her body calmed down. This story has stayed with me in case I had to go through a similar experience for my fist dreaded chemo. Lucky mine wasn’t as bad… But I learned a lot from the love, and support, my partner provides by simply being there and silently confuse to watch over me, worrying, encouraging to get well soon… it could break my heart to look her in the eyes too long, so I broke off and walked back to bed, determined to beat this thing.
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