My Life-Threatening Illness is Frighteningly Ordinary

After delays and frustrations, the results of the PET scan have reached the proper experts, and now I have a clearer idea what I am facing. There is an irony here – after two weeks of delays, accompanied by gnashing of teeth and rending of garments, the conclusion is… carry on.

The cancer has traveled from my prostate, in a pattern familiar to all who follow that sort of thing. From a medical point of view, I have a very boring sort of cancer

Prostate cancer cells gorge on testosterone, so step one is shutting down the supply. In my head, while this would shut down the cancer at the source, it seemed like wherever the cancer had spread a prostate-specific treatment would have no effect. Happily for me, that was not correct. Wherever the cancer spread, it brought that hunger with it.

The doctor who has been running the show up to now is a no-nonsense sort of guy, and his approach is entirely unemotional. Here’s the data, here’s what happens next. My disease is entirely routine and the path I am on is well-worn. Just another day at the office for the cancer crew.

That works pretty well for me, but the Official Sweetie has now been with me in a few meetings on the subject of my mortal peril and would prefer that emotional health be at least acknowledged in a conversation like this. As medicine and engineering continue to merge (which is a good thing), the emotional gap is likely to get more pronounced.

(I have been contacted by my insurance company by an oncology nurse who oozed empathy over the phone, and is pointing me to support resources, and other helpful stuff — so perhaps Official Sweetie isn’t the only one to realize this.)

So. I have been on a roller coaster, and now I get to the point where the ticket guy is waiting, and he’s telling me that the ride was flat all along. My legs are still wobbly, but sure enough the ground feels firmer now.


Through the Magic Donut

Thursday, after some delays I don’t fully understand, I spent an afternoon in the realm of science fiction. I was given a dose of a chemical from a heavily-shielded syringe, then put in the Radioactive Person Quiet Room for an hour, then my body was passed three times through the hole in a large, whispering machine.

The technology is amazing, and I will enjoy telling you about that. The experience of the technology is a bobsled ride down into your own head. I will tell you about that too, but it won’t be as fun.

As I describe the procedure to people, I get excited. The procedure is pretty amazing; the stuff of science fiction only two decades ago. Starting with the question “how can we detect where cancer cells are inside someone without cutting them open?” you quickly get to a place that has been a long time coming.

Medicine, you see, for the last century or so, has actually become a science. Cancer is now treated by the medical equivalent of engineers. Big Physics had its day, with massive particle accelerators and whatnot, but the priority has changed to using what Big Physics yielded to improve lives directly.

Take antimatter, for instance. Here’s the sequence of steps that led to PET scans:

  1. We need to find concentrations of cancerous cells.
  2. Cancerous cells are in overdrive, and consume lots of energy.
  3. If we can find cells consuming abnormal amounts of energy, we can find the cancer.
  4. Hungry cells demand lots of energetic molecules like glucose.
  5. Follow the money: if we can trace where the glucose is going, we can find the hungry cells. But how do we track the glucose?
  6. We can detect the source of gamma radiation very well, right through any intervening tissue. So if we had gamma-emitting glucose, we could follow it around.
  7. Hello, Fluorine-18. It is an unstable isotope, but its magic is that when it decays, it emits a positron. Antimatter! That positron won’t get far before it runs into an ordinary electron, and sure as you can say e = mc2, the m of the two particles becomes e, a gamma photon that can be detected.

After I waited for the tracer to make its way through my body, I was called into the Chamber of the Magic Donut. It is a room that is terribly ordinary — linoleum floor, fluorescent lights, standard drop ceiling — a surprisingly drab setting for the machine that filled the middle of the room. The machine itself, I didn’t stop to inspect when I got there. I had other thnings on my mind.

I thought perhaps there would be a bin where I could put my metallic belongings, but instead the Guardian gestured to a chair. “You can leave your stuff there.” I was a little bothered by the informality of it, but I put my stuff on the chair. I guess I was expecting something more planned – people will need a place to put their belongings. Or perhaps I was expecting something entirely more ceremonial.

I had been told to dress warmly, so I had worn sandals so I could put on winter socks when the time came.

“Don’t take off your shoes,” the very nice man said. He was large, and a little hunched over, and reminded me of a mythical creature tasked with guarding the sanctity of the chamber. “Your sweat is radioactive, and if you get it on the floor it could throw off the measurements.” It was not as cold in there as I had been led to believe, so I forwent the socks, and climbed up onto the Great Tongue Depressor – the platform that would pass me though the Hole of the Magic Donut.

So, loaded with 18L I lay down and allowed the Guardian of the Bridge to strap my hands to my side. I took a breath and closed my eyes.

The first two passes were quick; the first was just so the machines could measure my position. The second was a CT scan. Pf. That science fiction is old news now. Both those scans were over in a couple of minutes. Then came the PET.

It started from my thighs and worked its way up. By now many people had reminded me that it was important to hold still. So I did.

Another fun fact you might not know about me is that I have a skin condition on my face that can get itchy. It was only a matter of minutes before an itch on my face, unscratched, grew into something else. Like something was hollowing out a part of my cheek and replacing it with an ache designed purely to annoy.

But I held still, and every few minutes I would be moved a few inches. It was impossible not to think about where I was inside the donut and what the data it was gathering at that moment might mean. My pelvis, where there is certainly cancer – but has it reached bone? Then the gut, then the thorax (does my breathing make those images less reliable?) and finally the brain.

Shit. Please not the brain.

Each time the Tongue Depressor moved me within the Magic Donut, I had nothing better to do than imagine what it was seeing at that moment, and what that might mean. Imagination is a curse, sometimes.

There were at least two people in the control room; they probably shared knowing glances as the scan came to life in front of them, deciding when the image was good enough to move to the next slice.

But that was Thursday, and the weekend arrived before the radiologist could sign an assessment, so I have been waiting, less or less patiently. Tomorrow I hope I will learn the results, and see what the next phase of Science Fiction holds in store for me.


“It was CRAZY up there!”

I remember a time, long ago, walking along a beach that had a huge amount of rotting vegetation. My friend commented on the stench, and I wondered, not for the first time, if perhaps my sense of smell just wasn’t as good as most people’s. This week I got my answer.

If you have been around me for any amount of time at all, you know that I will sometimes sport a lingering cough that goes on for weeks. During the course of my malady my lungs are clear, but there is a steady stream of grot flowing down my sinuses and into my throat. Even when I don’t have a cough, I have an irritated throat most of the time.

In general, those coughs have been triggered by sinus infections. I recently began to wonder if there might be a structural issue in my face that made me more susceptible to infection, and made the infections linger beyond all reason.

So at last, after about 50 years of just rolling with the problem, I went to see a nose doctor.

Dr. Carter, who is a hoot, peered up my nostrils and said, “Yep, your septum’s deviated to the left.” I was a little surprised at that, only because in general it is the right side of my face that is more constricted. Dr. Carter then ran fiber optics up my nose and down into my throat, looking around. “This is gonna feel really weird,” she said as she guided the camera into my head.

She scheduled me for a head scan and when the results came back, I sat with her and we went over the image. It turns out my septum started to the left, but then veered back to the right and hammered directly into one of my sinuses.

I think perhaps to make the insurance justification easier, Dr. Carter first started me with a regimen of medications and shooting saline solution through my nose. But finally it was time to get the sumbitch fixed.

I mentioned I was having the procedure to a few friends, and two of them immediately set out to temper my expectations. Sure the results were great eventually, but both my friends warned me that the recovery could take a long time — even months.

Eight days ago I checked in at the surgical center and, after a delay, I was wheeled from a crowded pre-op holding pen into the gleaming, science-fiction-worthy operating room. As is procedure, the OR staff chatted amiably with me while the anesthesia did its magic. Vacations was the topic.

… and then I was somewhere else, not in pain, but profoundly uncomfortable, with unrelenting pressure behind my eyes. I reached up and began to massage my besieged eyeballs, really working on them, when someone said in an alarmed voice, “Don’t rub your eyes!” Apparently that was not the right thing to do.

That post-op time is a little hazy for me, but the Official Sweetie of Muddled Ramblings and Half-Baked Ideas got to meet the esteemed Doctor Carter, and was also impressed. OSMR&HBI reports that Dr. Carter used the phrase “all kinds of wonky in there” to describe the state of my under-face, but also she said that the surgery had gone well.

In my nose at that point were two splints, tied together by a suture through my septum. The splints had airways built in, but let’s not fool ourselves — all that blood and mucus was going to get in there and plug those suckers.

[Get-poor-quick aside: how hard would it be to create a tool to allow the patient at home to safely clear those airways? It would have made a huge difference to me.]

Home, I settled onto the couch, propped myself up, and that became my home base for the next four nights. For the first two nights, sleep was pretty much impossible. I could put my head in a comfortable position, but when I dozed off my tongue would block my airway and I would wake up after a few seconds in a suffocation panic, or I could tilt my head back, cpr-dummy-style — but them my throat was so open I would dry out after a few breaths and begin to cough (I wasn’t supposed to cough).

Eventually the inflammation lessened and I was able to get at least some air through my nose. That resulted in a suffocation emergency after a few minutes, rather than a few seconds, and that made a big difference. Never was I so glad to get two hours of sleep in a single night.

In the kitchen three days ago, I opened the container for my traditional second cup of the morning, a blackberry and sage infused tea, and… I smelled it. I mean, I really smelled it. Even with my nose stuffed with plugged-up hardware, I smelled it. Later, I ate a very-ripe banana and it tasted weird. Like no very-ripe banana I had eaten before. I almost chucked it when I realized that it wasn’t the banana that was different.

I got pretty excited. I had just been looking forward to breathing better and maybe not having a wracking cough 10% of the time. I had not considered that my actual sense of smell might be enhanced.

I mentioned that to my boss via chat, and his response was, “You should grab an IPA, really test that baby out.”

Which tonight I have done. I went in to have the splints removed this afternoon, and Dr. Carter regaled me with stories of just how messed up my nasal structure had been. “It was crazy up there!” she said. She described bony masses, chiseling, sinuous septums, and a bunch of other stuff. “How have you made it this long without having that fixed?”

I shrugged at that. How was I to know that breathing could be so easy?

Because holy dang, when the splints came out, the breathing commenced. And the smelling just got better. And the IPA? Magnificent.


The Ascendant Science

Medicine, it seems, is always the last science to the dance. While one guy was establishing the principles of electricity, one of his friends was being bled to death in the name of medicine. When radioactivity was discovered, health practitioners killed countless patients with it.

For most of the history of humanity, doctors were quacks. All of them. The discovery of tiny creatures that live inside us revolutionized the medical biz, but compared to the physics industry and its spinoffs, medicine was still mostly chanting and waving rattles.

Early in the last century, physical science went through a boom so loud our ears are still ringing today. The second half of the 20th century saw technology go nuts as those fundamental discoveries reached market.

That wave gave us the machines we needed to finally dig deep into how we work as organisms. Allow me to tell a rather long story to illustrate.

I have been working to lose weight. If you use the Internet, you’ve seen ads that read, “New scientific breakthrough can help you shed pounds!” and shit like that. I have long made a point of ignoring those ads, but I became curious about the scientific breakthrough. One night I clicked one of the ads.

I was presented with a video. Generally, when I want the answer to a specific question, I HATE video. But in this case, I understood that the video existed for the very reason I dislike them: the producer wants me to go through a lot of shit before providing me the nugget I want. From their point of view, video is perfect.

With the sound off, I watched as cartoon people were drawn and erased, showing a variety of body forms. Finally, a word came on the screen: Leptin. I stopped the video and fired up Wikipedia, where I was offered an explanation with lots of words I didn’t know. I knew enough of them, however, to understand that leptin was created by fat cells, and when leptin levels go up enough to be noticed by the brain, you feel full, and your metabolism cranks up. Injecting leptin into obese mice helps them lose weight; it doesn’t work so well in humans. Also, leptin was found in the 1990’s.

Then there’s Ghrelin, identified about ten years ago. Ghrelin makes you feel hungry, and slows your metabolism. The Wikipedia article about ghrelin identifies exactly which gene builds it, how it’s matched with a (perhaps unused) counterpart, and where it binds to receptors in the brain. There are drawings of the damn thing.

I trust the drawings, but it all seems vaguely magic.

I think this is just the beginning. The human organism is the most complex thing in the known universe, but we’re starting to figure out how it works. Next comes how to fix it when it’s broken; how to address the exact problem without mucking with other systems. We will move from drugs to viruses — those that attack specific bacteria and those that give the host the ability to produce a particular protein. It’s pretty cool.

That technology explosion? We’re starting to feel the biology echo, and it’s going to change everything.

Marketing Diseases

It’s October, and that means football players everywhere are wearing pink. Some in token gestures, others with shocking neon forearm and shin wraps. It’s part of an effort to end breast cancer.

Now, I’m all for that. Breasts should not get cancer. People with breasts should not get cancer. For the record, I’m against cancer. But, like General Motors, cancer sells under many names. Breast cancer is a killer, but lung cancer kills more women yet. Lung cancer also kills non-women. Lung cancer bites hard.

Maybe lung cancer doesn’t get the same attention because it’s perceived as a consequence of the afflicted’s choices. Hey, you chose to smoke, don’t ask me to feel bad for you. That’s tough to hear if you’re a non-smoker with lung cancer, but statistics are a bitch.

Because of the smoking connection, lung cancer is a tough sell. As a bunch we don’t pony up so well for diseases like that. Breast cancer is much more marketable, what with innocent women being brought down merely for having boobs. Most folks, myself included, are in favor of boobs, and are against women dying for having them.

But truly kicking one cancer’s ass will likely yield the keys to kicking the rest of them. Mad Cell Disease must have some common roots between manifestations. There are eleventy-bajillion different sorts of cancer, and it’s up to our generation to kick twelvety-bajillion tiny cancer nuts, and send them home to cry to their mommas. And then kick their mommas’ tiny cancer nuts.

We can fix this cancer thing, with the proper resolve. So forget about politics and don that pink ribbon with pride and vigor! Better yet, pony up a buck or two. It’s like voting, but your opinion actually matters. That lymph gland you save may be your own.

Penicillin – and What Comes Next

We’ve heard about the super-killer bacteria, the ones resistant to penicillin and all the derivatives. Nasty, nasty, little guys. But consider: those super-baceria are as dangerous as every damn infection anyone ever got one hundred years ago.

I mentioned once to friends that if I were to travel back in time to live in an earlier age, the thing I would miss most is dentistry. One of those assembled brought up antibiotics. To our generation the very idea of an infection is far less malign than what our great-grandparents knew. We worry about cancer today because we don’t die of starvation or infection first.

But now antibiotics are becoming ever-less effective. We just overdid it, and the nasty little guys still standing just give penicillin the finger. Are we foolishly squandering one of the greatest tools we’ve ever developed to improve the human condition? Absolutely. Antibiotics have to number among the seminal achievements of technology.

But check this out: There are viruses that attack specific bacteria. For instance, there’s a virus that attacks tuberculosis. Seriously! Now, that virus may not be gnarly enough to completely wipe out TB in a human, but that seems like a pretty promising start to a new way to fight infection. It also strikes me as poetic to fight germs by getting them sick.

Yeah, the fact that we can now imagine a world with home build-your-own-virus kits can be a little worrying. Let’s just make sure we’re afraid for the right reasons. Often when you hear about genetic engineering, hand-wringers focus on the possibility that a created life-form that was supposed to be benign mutates into something evil that destroys the world. I’m not saying it can’t happen, mind, but it’s far more likely that a virus that’s already dangerous to humans — flu or chicken pox or even the common cold — will make that leap than some organism who just hasn’t been practicing at hurting people very long. The viruses already inside us would require a much, much, muchmuchmuch smaller mutation to get to wipe-out-humanity status, and they have a way to make a living even if they don’t get the whole mutation in one jump.

No, the reasons to be afraid are twofold: One, bad people will have the technology to make a lot of people sick. They will start with flu and do it right. Two (and this is my own personal hand-wringing unsupported by any actual research), the therapy might work too well. Every once in a while humanity wipes out a pest only to discover it filled an important niche in the local ecosystem. Kill all the mosquitoes and suddenly beetles are eating your crops. (I have a very vague recollection of a chain of events somewhat like that, but don’t go quoting me here.) We could wipe out some bacterium only to discover that it had an important role in the world that we never guessed at.

But you know what? I’m pretty stoked about this. It will be a long time before the our buddies the bacteriophages are cheap enough to change the world health outlook, but a long time isn’t as long as it used to be.

Here’s an article that talks about other applications of custom viruses, and revives my hope of getting out of brushing my teeth.


Darth Vader returns!

My roommate Travis had a serious underbite, and he just had surgery to correct it. The procedure was called Upper Mandible something-or-other. I’d ask him what it was called but he wouldn’t be able to tell me anyway.

See, the thing about the upper mandible is that it’s attached to your head. Not just sort of attached, but really fused on there. Otherwise your upper teeth would move around, and we can’t have that. What happens if you wish to scoot your mandible forward a bit? You go to a doctor who starts by breaking your face.

Once you get your face good and broken, the doctor can scoot the ‘ol mandible around to his heart’s content. The next step in the chain of misery, however, is that once your choppers are correctly aligned, you want to nail down the mandible again so it goes back to its stodgy immobile old ways. This takes several weeks, during which time your mouth is wired completely shut.

Travis had his face broken Monday, and had to stay overnight in the hospital because he was bleeding too much and some of that was getting in his lungs. His pie hole is wired so tight he can barely even spit. When he got home yesterday his face was the size of a bowling ball and he had two tubes wedged into the sides of his mouth to help him breathe. He sounds like Darth Vader and looks kinda like him as well. You know, in the scene where he’s dying.

I believe the estimate for how long Travis will be eating through a little tube the he sticks back in the corner of his mouth is 6 weeks. Then, not only will his teeth line up like little pearly cheerleaders but I imagine he will be a new, trim version of Travis.

I’m not sure – I’m embarrassed to ask – but I think he got the surgery done on purpose.