This page has remained blank as I don’t quite know how I want to handle it but it is apart of my story and it may help someone out there going through something similar so here we go.
Five years ago my husband was diagnosed with Non Small Cell Lung Cancer T1 and they removed his lung. They genuinely believed that they got all the cancer as it was only T1 (stage 1) and that his prognosis was excellent. He went every year for a MRI to evaluate and they were all clean. On February 10, 2025 we got the “You are cancer free” email as he had been cancer free for five years.
In the meantime, my husband had been having some issues with his memory, forgetting simple things which he chalked up to a heart medication he was taking and then he began having headaches with vision changes and went to the eye doctor. The doctor saw considerable swelling behind his eyes and ordered a Cat Scan. The next day, February 11, 2025, we got the news that he has metastatic carcinoma of the brain with six tumors, inoperable.
We were crushed to say the least, and our journey began. Blood tests, MRI’s, radiation, the works were all ordered without even speaking with someone. He canceled them all as he wanted to speak with someone to hear what all this looked like first and to hear what his prognosis was. We were finally able to speak with his oncologist who at that time gave his approximately eight months to live. He told us that he would be sending his prior cancer off to a lab to have it tested for a genetic marker to see if there was hope for immunotherapy and if there was a genetic marker there were other options available to us but for now our only option was radiation which we agreed to. The radiation would be whole brain and it would last ten sessions. We completed the radiation and got word that indeed there was a genetic marker for EGFR and that immunotherapy was available, chemo, so more decisions needed to be made.
The chemo drug that they wanted to put him is/was experimental and has many side effects, as they all do, and there was only a small percentage that it was stave off his symptoms for a short time, this was not a cure. Having said that, we opted to try for two weeks with the understanding that if the side effects were too great we would stop. After two weeks the effects were not awful and so we continued but after three they were unbearable. He became a shell, unable to get out of bed, unable to eat, sore covering his face and mouth and depressed and we reached out and they took him for a week to let his body rest. During this week he made the decision that he would not be going back on the medication, that he would take his chances without the chemo.
We are four months into this journey, four of the eight given, and the cancer has progressed as it does. We are at what I would consider the beginning of the end. I don’t anticipate I will have my husband another six months. This is my journey grieving the loss of the man I love while he still here while caring for him and attempting to care for myself. I will update this page as I can, as is necessary, as I feel I can.
The Neurodivergent Path to Recovery 