Confirmed: Waiting is the Hardest Part

I feel better now than I have in a long time. My back is bothering me less, and my shoulder is almost functional. The fact I feel better is the only tangible evidence I have that I’m gravely ill.

Monday, medical science is going to address that issue, by making me feel like shit. The plan is to drip a chemical into my bloodstream that almost kills me, to make me well. Six times (at least to start with). In the next half-year I will suffer greatly to defeat a disease I don’t feel at all.

The Official Sweetie of Muddled Ramblings and Half-Baked Ideas has been preparing. Ice packs for hands and feet; apparently during the infusions extremities can ache like hell. Calcium for bones. A bin to puke in while in bed. Preparation for whatever happens in my gut (it could go either way). I got a shirt with sleeves that open up to allow access to my veins. Beanies to cover my bald head.

Today we officially ran out of ways to prepare. We laid out the changes to my medications for the next few days in my big weekly pill organizer, and from here on, at least for a while, we will be reacting, rather then preparing. It’s all crazy and I would be so lost in all of this without The Official Sweetie by my side. In conversations with the health industry, I introduce her as my manager. This maze is bewildering and confusing, and without her I would likely spin in circles and fail.

But preparation is a big part of how Official Sweetie copes with shit and now the preparation is done. Monday big things happen, but that’s not until Monday. We are both rudderless as the river sweeps us along. We have nothing left to do but imagine the future and pass each other incredulous looks about the present and cry a lot. Tomorrow I will smog my little convertible and Try Not To think About Stuff. I think I will shave my head, because it may be years before I have a long beard again and I want to see myself with that look. I’m also curious about the scars I have up there, from past foolishness.

But tomorrow the ticking clock will be especially loud.


Health Insurance is the Same as Health Care

At least in this country it is. The care you get is entirely based on the insurance you have. Better insurance, better care. Because of that, the care you get in the United States is entirely dependent on where you work.

Where you work should not dictate the health care you get. Maybe I should say that louder. WHERE YOU WORK SHOULD NOT DICTATE THE HEALTH CARE YOU GET.

You don’t have a job? Tough shit, Skippy. Maybe you can get enough care to survive and let the bankruptcy courts give you a chance to move on. But probably you can’t. Even if you had a job but the insurance was inadequate you are hosed. Maybe you leave your widow in an impossible situation, struggling for years to catch up with the bills, only to finally give in.

I am not well, and it is impossible to imagine facing this if I didn’t work where I do. I just read more than one opinion that my insurer sucks in the biggest way, but my employer has paid extra for the “suck-less” version of the plan.

It is a privilege I’m happy to have at this moment, but it is absolutely privilege. It should not be. Staying alive when sick seems to fall under the inalienable “life, liberty, and pursuit of happiness”. It’s even the first one mentioned! And while the Declaration of Independence is not legally binding, that phrase is an anchor of Who We Are.

We all have the right to live. And that means we all have the right to health care. I am wealthy, so I get better care than most. That is wrong.

There are people who want to change this. They want everyone in this land to have equal access to health care. Ironically, they are blocked by voters who generally would benefit from the change.

Insurance companies make absurd bank off the current system. They want it to continue. Maybe a few people die needlessly, but the money is bigly. Look past their sponsored candidates, look past the strange vibe that only worthwhile people should have health care, and the worthwhile are employed by big companies.

The biggest losers in the way things currently work are, in order: people, and small businesses who can’t afford the suck-less level of care.

Let’s just stop this whole thing. Tying health care to employment is demonstrably disastrous.


Sparkle and Fade

It is late now. The house is quiet except for Sleater-Kinney abusing me through my headphones. Before that was Airbag, and before that, Hog. It will probably be the Raveonettes next.

Tonight, I can feel the glow of the monitor as I type. It almost hurts — it wants to, maybe, but it can’t.

Here and there, throughout my genome, there are genes that tell each of my cells, DON’T BE CANCER. You have them, too. In each cell, DON’T BE CANCER is a constant struggle between the interests of the individual and the interests of the whole. It is best not to forget that the alliance between the cells that compose our bodies requires billions of independent contractors to take the long view.

But if you take the brakes off, any of those little fuckers will run wild and consume you with their voracious hunger, forgetting their role in the greater organism.

It just takes one.

As we age, our cells are copies of copies of copies. Sometimes the copy isn’t perfect. Mutations creep in. If one DON’T BE CANCER gene is compromised, that’s all right, they come in pairs. But if in subsequent generations the co-pilot gene also mutates, then the cell throws off the shackles of civil society and Mad Max enters the building.

I am Thunderdome.

In my prostate, one goddam cell lost both sets of brakes. The odds of a mutation are tiny, but the number of cells is huge. I don’t even know why my goddam prostate exists, let alone why it should be such a hotbed of insurrection. As far as I can tell, it’s a janky-ass clamp. I should probably read up on that.

[Everclear is now punching me in the eardrums.]

But tonight the house is dark, except for the aggressive glow of the screen I’m typing this on, and quiet, except for Sparkle and Fade in my headphones, very loud, and I wonder, what the fuck? That is the question I have no answer for.

We are, ultimately, composed of billions of wild animals. These wild animals have accepted genes to enforce constraints that benefit the larger organism. But they are always pulling at the leash, and if one gets loose then, well, you have cancer.

I have cancer. Still working on figuring that out.


A Picture I Took

A partial eclipse passed through town the other day. Perhaps someday scientists and astronomers will be able to predict these things, but on that morning I was woefully unprepared. But I have a nice camera, a steady tripod, and a ND-100000 filter that makes it safe to point a camera directly at the sun.

In my rush to set up the camera to catch the eclipse at its eclipsiest, I didn’t use the tripod mount on the lens, which made my setup pretty front-heavy, but fortunately my ball head was up for the task with only a little cursing.

In my previous tests taking pictures of the sun with the ND-100000 filter, I found that autofocus was pretty helpless. I’m pretty sure there are focus points on the sensor that are suited for this, and I had intended to read up on focusing on the sun with my camera, but then the clock was ticking and I just did a manual focus bracket.

Hanging in the middle of a black sky, a partial eclipse is actually pretty boring without some context. Had there been any warning that the eclipse was coming, I could have planned a shot with some terrestrial context. Luckily for me, there were some high clouds visible even through the black glass when directly backlit by the sun.

There were shots with really interesting clouds, but the sun was out of focus. Then there were shots with a tack-sharp sun and boring (or no) clouds. Yawn.

This shot, however, was pretty ok. The clouds excuse the slight softness of focus, and they’re doing interesting things.

I like that there are layers of darkness, and there is a feeling of motion. It takes a little thought to realize that no crescent moon could ever look like that. Still, in a way, it is a picture of the moon.


Many Years

For those catching up, I have cancer. Recently I went though a science-magic machine and the cancer in my body was mapped in 3D. After a frustrating delay, I had a conversation about the results with the urologist who had done the biopsy and established the need for the scan.

“As we expected,” he said, though to this day I’m not sure who we includes, “the cancer has spread to…” I won’t get the rest of the quote right and it doesn’t matter anyway. I’ve got cancer up in my shit. My shoulder that has refused to get better? It’s got cancer in it. Suspect vertebrae? Cancer.

Doctor One, the urologist, spoke briefly about the cancer busting loose from the prostate, and then very quickly turned to reassurance that what I was going through was ordinary. Missing was the connective, “You are in mortal peril,” part.

Doctor two, the oncologist, did not miss that step. After a week of relative optimism, Dr. Two set the level. “You are stage four, the worst stage. We are not going to cure you. The goal is to give you more, better years.”

Well, fuck. Stage four. In cancer jargon, that’s when the shit’s got loose. Medically, you’re not trying anymore to defeat the cancer, you’re playing a delaying action, buying weeks or years. Doctor One, the urologist, knew this, but didn’t square up with me.

Of course now I’ve turned to the internet for answers. Everywhere it says, “[people in this state] often live many years with treatment.”

Many years. HOW MANY? Can you give me a mean and a standard deviation? This is really important. What are the odds I am going to retire? I have plans for that. Lots of plans. I know that there is no crystal ball giving the exact date of my demise, but any sort of range would be helpful.

But to all the Muddleverse, I promise I will keep shouting into space for many years.


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.