GBM Patient Currently Under Hospice Care

I was diagnosed with a brain tumor in May 2022 after arriving at the Northwest Hospital ER with headaches, nausea, and vomiting. I had a partial resection a week later, and several weeks after surgery, I received the final biopsy results.

The diagnosis was glioblastoma multiforme with mutations MGMT unmethylated, IDH wild-type. These results are basically the worst-case scenario. My doctors never told me that I had any specific amount of time left, but I understood that it probably wouldn’t be more than a few years and could be as little as a few months.

I went through the usual standard of care, including eight months of wearing Optune during the adjuvant phase of temozolomide (TMZ) chemo. I then had a recurrence in the spring of 2023, followed by about six months of bi-weekly Avastin infusions. My first MRIs after starting Avastin showed that the tumor was stable, but my last MRI just before Thanksgiving showed that the tumor was growing again — by 30% since the previous MRI. Therefore, I abandoned the treatment and decided against trying other options for additional chemo, opting instead to initiate hospice services and prioritize quality of life.

Currently, I am happy with this decision, and I’ve been highly satisfied with the quality and type of care that I’ve been getting through hospice. In terms of symptoms, I’ve been losing the use of the left side of my body. It started with my fingers and my mouth just before diagnosis, but over the past few months (and worsening in recent weeks and even from day to day lately), it has spread to my whole hand, then my arm, my foot, then leg, and even to my core.

My biggest challenge these days is getting adjusted to the semi-gradual loss of my independence and mobility. I have been documenting my experience on a YouTube channel, and this has helped me stay occupied now that I’m cooped up at home most of the time. I am grateful that I have few other symptoms. My energy is lower than usual, my cognition is a bit slower, my memory and attention span are a bit worse, and I sometimes get headaches.

TAGGED WITH: glioblastoma

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.