Living with Glioblastoma

As November of 2023 rolled around, I was running out of good options to treat the tumor spreading throughout my brain. In late March I went to the ER seeking an explanation for a bizarre mix of symptoms. Imaging and surgery yielded a diagnosis of glioblastoma, an incurable and highly aggressive form of brain cancer. This is not the kind of cancer you beat. It's the kind of cancer that kills you. In trying to resolve balance and mobility issues I'd ended up with a terminal diagnosis.

By August 2023, chemoradiotherapy, part of the standard of care, had failed. My symptoms worsened while the tumor grew. This happened while my brain was irradiated with megavolt X-rays and poisoned with a potent alkylating agent. Modern medicine had deployed the best weaponry it could muster, but my tumor just shrugged it off. Now it was spreading, unchecked.

The treatment options that remained were all problematic. I may explain this in a later post. For now, suffice it to say that stepping onto the treatment merry-go-round for another spin seemed pointless. For most practical purposes I was done with treatment.

This left the problem of how to actually live with glioblastoma.

My biggest problem was not angst over my impending death — it was the symptoms. And there were so many of them. I should point out that I'm much better off than some patients, and I'm thankful for it. But what others may or may not experience doesn't necessarily help me get on with life.

I group my symptoms into seven categories: (1) weakness; (2) imprecision; (3) dead and/or scrambled sensations; (4) muscle spasms; (5) headaches; (6) going offline; and (7) the shakes.

Weakness, imprecision, sensory malfunction, and spasms are concentrated on my left side. Back in March it was the sudden inability to pick my left foot up off the floor that led me to seek treatment. Over the last several months weakness has spread up to my calf, lower leg, upper leg, and all the way up to my left hip and buttock. My left abdomen has also become weaker. While weakness was spreading throughout my left leg, it also spread to my left arm and hand.

Weakness is often accompanied by imprecision. I define "imprecision" as my inability to make the affected body part go exactly where I want it to go. One aspect is lack of muscular sensation. When you move a muscle, you become aware of this movement. This feedback allows you to keep track of your body parts in space and thereby precisely place them. I've lost at least some of this ability in my left arm and hand, and especially up and down my left leg.

Left-side weakness and imprecision have made it difficult to walk. Balance is one problem. If I'm not paying attention, my body veers to the right as I walk. This is counterintuitive because the right side is stronger than the left. But then again, very little of what's happened makes sense. Another problem is injury. Sometimes when I get out of bed in the morning it seems as if my left foot could either be pointing forward or flexed backward and I'd never know the difference. If the foot were bent back, I'm not sure I'd get the pain signal correctly. I can barely feel what's going on with my left foot when wearing a shoe and this has resulted in bruised toenails due to toes curled forward without my noticing. I've had numerous muscle cramps and strains on both the left and right leg. Fortunately, massage and heat worked wonders, and heat alone is often enough.

The sensations on my left side are numerous and hard to describe. My left leg and foot, and left arm and hand are now in almost constant discomfort to varying degrees. Sometimes I feel burning. Sometimes I feel as if muscles are being stretched beyond their limit, even when relaxed. Especially on the underside of my foot and heel, the feeling is one of being stabbed repeatedly with a retracted ball-point pen. Then there's the itching sensation that can't be quelled by scratching. Sometimes, it feels like I'm stepping on a metal plate, and this can happen even when lying down. I've experienced tickling on the bottom of the left foot as pain. I've experienced pain in my abdomen showing up as pain in my leg. These scrambled sensations come and go, and stay without much of a pattern I can detect.

Starting around August, left-side muscle spasms started and have since intensified. These take the form of usually a single isolated muscle contraction. There can be as few as one and as many as two dozen in an hour. They occur mainly in the leg, arm and abdomen. My face has also been affected, but more recently on the right side as well.

All of this affects my sleep. Strange sensations and random muscle spasms make it hard to fall asleep and stay asleep. Usually I can tune these useless sensations out, but sometimes I can't.

Even so, the biggest obstacle to sleep has been the return of headaches. I had these regularly before being diagnosed in March. They ranged in intensity, but the worst were 8 or 9 on a scale of 10. They tended to go away within an hour of getting out of bed. They're one reason I became a morning person. Over time I learned to ignore and even forget about these pains. Little did I know that persistent headache is a commonly-reported symptom of a brain tumor.

My morning headaches went away after surgery, but by October they were back and gaining in intensity. Recently, one of these morning headaches didn't go away after taking Tylenol. This was a first.

Scrambled senses don't always manifest in pain or movement difficulties. A newer symptom is diminished appetite. Never in my life, except for bouts of the flu has this been a problem. Now I notice myself getting full soon after meals start. Nor does hunger bother me as much as it used to. Sometimes the idea of eating doesn't seem very pleasant. I've lost weight as a result.

Given this long (and still incomplete) list of symptoms, you might be surprised by how I look and act. I've had a lot of practice at compensating for the mess my nervous system has become. I walk without assistance from lifts, wheelchairs, walkers, or canes. I take stairs whenever possible. I go about all aspects of my daily routine (showering, dressing, doing chores, serving customers in my business, writing, researching, socializing, traveling) without assistance of any kind. I don't look emaciated, and I've even managed to build some muscle. Most of my hair has grown back.

I don't drive, but that's by choice. If I were to suddenly become incapacitated I could hurt others (a carfull of kids coming home from a soccer match, for example) and I'd never forgive myself for it. I've experienced two periods of what I call "going offline." I was in the middle of doing something when the state of the world advanced without me for about a half minute. Then I was back. I gather the working hypothesis is that these were seizures, but I'm not sure.

Luck has something to do with the abilities I kept and retook. The location of my tumor does not appear to affect speech, involuntary muscle contraction, cognition, memory, hearing or vision.

But luck doesn't explain all of it. For one thing, I've never backed down from the Principle of Least Convenience. My left side may be squirrely, but it gets worked at least as hard as the right. I've also continued my at-home physical therapy program, even expanding it in recent months. I now walk typically four miles a day, but sometimes more than eight. My workout includes stretching, coordination, strengthening, and speed exercises. I'm currently working up to my first full-length pull-up and trying to master the balance beam.

I can still do a lot, but there are risks. Walking at times feels unsafe, and memories of my fall still haunt me. I do my best to ignore the insecurity and fear. It's important to keep pushing, especially if it feels unsafe. Giving into fear is the fast track to spending all day at home, then spending all day in the bedroom, then spending all day in bed. For me the choice is easy.

More than this, I feel that pulling back in the slightest would quickly unravel all my previous effort. In the hospital after surgery I was schooled in the shocking speed with which the human body and mind degrade through deconditioning. Better to risk injury than to give in to fear and the mess that comes from it.

Despite all that glioblastoma has taken from me, I'm grateful for what I haven't experienced, including:

• nausea and vomiting
• loss of bowel and bladder control
• distortion or loss of vision
• inability to speak
• inability to write
• inability to go to the bathroom by myself
• inability to dress myself
• inability to walk
• loss of executive function
• hallucinations
• delusions
• inability to comprehend speech or writing
• emotional outbursts
• personality changes
• debilitating headaches

Sooner or later luck and my best efforts to avoid these symptoms will fail. But I'm learning to distinguish between the things I control and those I don't. I don't control the speed or trajectory of the tumor through my brain. But I do control my reaction to the things this awful disease keeps throwing at me.