About one year ago (March 23, 2023) life as I knew it was upended by a terminal brain cancer diagnosis. What started as trouble with balance and walking escalated into a visit to my local hospital's emergency room. By the time I was discharged, I'd had an MRI that showed a tumor the size of a tennis ball in my right parietal lobe, I'd been told that without surgery I'd die in three months, I'd undergone brain surgery, then I had to pry what the doctors suspected from them with a crowbar. I'd fallen hard in the hospital due to not understanding the scope of what had happened. The period after hospitalization was marked by cognitive and physical impairments, rehabilitation, a possible hallucination, a lifetime's worth of medical procedures, and an up-close look at how the medical sausage gets made.

Beyond this, I'd come to understand that my experience was similar to what about fifteen thousand Americans face each year. The post-surgery treatments for my particular tumor are not very effective, some doctors are less than up-front about the situation, and medicine seems to be in denial about the suffering that it can inflict when terminal illness and high-tech medicine meet outdated views on death and dying.

Patients who receive a glioblastoma diagnosis are treated more or less the same in the US and indeed the world over. The centerpiece of this treatment is the standard of care. Its foundations stretch back more than two decades. To cut a long story short, patients with tumors like mine when treated with the standard of care have a median life expectancy of 12.6 months after diagnosis. My diagnosis was made with tissue collected during a surgery on March 26, 2023. 12.6 months from that date would be April 12, 2024. I think of this as my median, and I'm about to cross it.

"Median" is a term from statistics. Wikipedia says the following about it:

In statistics and probability theory, the median is the value separating the higher half from the lower half of a data sample, a population, or a probability distribution. For a data set, it may be thought of as "the middle" value [when values are sorted]. The basic feature of the median in describing data compared to the mean (often simply described as the "AVERAGE") is that it is not skewed by a small proportion of extremely large or small values, and therefore provides a better representation of the center. …

Assuming that I'm still alive on April 12, I will have outlived half of patients like me in the standard of care clinical work. To put it another way, April 12 marks the date at which half the patients given a diagnosis like mine on the same day as me would be expected to have died.

I feel compelled to emphasize that median survival is a metric that comes from statistical analysis of clinical data sets. It's not the midpoint of life expectancy for any particular patient.

To make this more concrete, let's say that 15,000 new glioblastoma cases are diagnosed every year in the US. That works out to 41 new cases diagnosed on the same day as me, March 26, 2023. About half of that cadre (let's round up to 21 patients) lacked MGMT methylation. On the day I was diagnosed, so were about 21 other patients whose tumors were unmethylated. On April 12, I will have outlived ten of them. The remaining ten will have died.

Given all of this, you might wonder how I'm doing. My go-to answer is "not as well as I'd like, but better than I have a right to expect."

On the plus side, I have few mental impairments. This allows me to carry on conversations about complex topics, to enjoy reading both fiction and non-fiction, to be interested in and concerned about the well-being of people I care about, to play poker and other games of skill (and win), and to write articles like this one from scratch without help. I do notice greater difficulty in paying attention to things that I don't care much about. 2023 Income Taxes, I'm looking at you. Fighting against it results in mental fatigue.

On the minus side, I have physical impairments, notably some of the same things that brought me into the ER one year ago. Strength and precision on my left side continue to degrade. It's most pronounced in my leg from the waist down. I can still walk, but these days I feel a bit wobbly and must focus intensely on it. I recently re-started physical therapy in an effort to stave off further degradation. Both left and right hands shake enough for others to notice, and this is most apparent when what I'm doing requires delicacy such as handling letters and envelopes. Writing with pen and paper has also become challenging. I find that it works best when I'm seated and can use certain stabilization hacks that I've developed. Fortunately, I can still use a computer keyboard and mouse, but again only when stably seated and by cheating.

There are other things going on with glioblastoma and me, but I'll defer a discussion of that to a future article.

Two treatment factors make my case unusual. First, I refused adjuvant temozolomide (TMZ) and have never taken it. I did take TMZ during chemoradiotherapy, but I would have turned it down without hesitation given what I know now. Adjuvant temozolomide is an optional part of the standard of care. Up to six rounds are recommended, but any number might be deployed in practice. You might think that turning down part of the standard of care has cut my life short. Based on my reading of the clinical data, I disagree. According to the published literature, TMZ offers little to no survival benefit for patients whose tumors are unmethylated. Why it remains part of the standard of care for these patients is something doctors should be discussing with patients.

The second unusual treatment factor is that I'm still self-administering sodium dichloroacetate (DCA). I'll have a lot more more to say about DCA in a later article. For now, I'll just say that I've noticed no obvious side-effects.

Glioblastoma is a terrible disease that no person should have to experience, either as a patient, or as a loved one. It's nice to know that statistically I'm doing well. But statistics can hide more than they reveal. I'm glad to have been spared the worst of what's on offer. But at the same time I know that luck eventually runs out and even best efforts are no match for a disease as relentless as this one.