My Medical History

At age 29 I was diagnosed with a slow-growing, malignant brain tumor called a grade 2 astrocytoma.

A neurosurgeon specializing in brain tumors removed the tumor.

My tumor is primarily located in the left parietal lobe, which effects the right side of my body related to nearly all-things sensory, ability to make mathematical calculations, and some motor functions. This has stayed consistent over time, but gets increasingly worse with each surgery.

At this time, in 2008, tumor biomarker information was not “a thing.”

Note: “Malignant brain tumor” is another way of saying “brain cancer.”

In addition, I am both-handed, or mixed handed, or ambidextrous.

My tumor recurred in early 2009 and I underwent another surgery to remove the tumor. My diagnosis remained the same: grade 2 astrocytoma.

The best in science at the time did not have strong recommendations about whether to do radiation and chemotherapy, or do chemotherapy alone.

Again, at this time in 2009, tumor biomarker information was not “a thing” available to most patients throughout the world. I could not base treatment decisions on this information (or lack of information).

My medical team and I decided to put me on a chemotherapy drug called temozolomide and watch to see if it worked without radiation.

Since I was so young my doctors did not want to radiate my brain if we could avoid it.

I took temozolomide (chemotherapy) for 24 months. I did very well on this drug, and did not require radiation.

Today, most people in this scenario (“recurrent grade 2 astrocytoma”) would likely go on a combination of radiation and chemotherapy.

Even though I was still living with a malignant brain tumor during this period, I was living my best life.

I experienced no seizures during this time and remained symptom-free.

My maintenance MRIs were initially spaced at every 3 months, then 4 months, then 6 months.

In 2017, I switched my brain tumor care to UCSF. As a new patient my neuro-oncologist requested to see me every 9 months. We eventually switched to annual visits by mid-2018 per my request.

In 2021, imaging revealed my tumor had recurred for a second time. (Learn how I felt the last time I learned I was having neurosurgery.)

I underwent an awake craniotomy with language and functional motor mapping, and then the tumor was removed. (Learn more about my recovery period.)

Tissue extracted from surgery revealed I had a grade 2 astrocytoma… still.

New science developed over the last 5-10 years revealed my tumor has “favorable” mutations (IDH1), which directed us to not pursue radiation and chemotherapy and rather watch the tumor via regular imaging over time.

A routine brain scan showed my tumor had not changed since surgery.

A routine brain scan revealed changes over the previous 3 months, which greatly worried my medical team.

I had my fourth craniotomy for tumor removal. Pathology, biomarkers, and genomic reports reveal I still have grade 2 astrocytoma with the IDH-1 mutation.

I received radiation therapy for 6 weeks in June-July. After radiation the plan was to have 4 weeks of rest, then do a follow-up MRI and see my neuro-oncologist to plan next steps.

After a brain MRI and continued luck with no physical symptoms indicating tumor growth, my neuro-oncologist and I decided on a treatment plan together.

The two of us agreed the best next step was for me to begin temozolomide (chemotherapy)… again. I took the drug for six months. After month six my maintenance MRI showed no active growth. I was returned to my life and to “watch and wait.“

By the end of January 2023, I had experienced a total 30 months of chemotherapy in my lifetime.

I am back to living my best life and will return to my neuro-oncologist for scans every three months. If anything interesting comes up I will update this space.