Starting the marathon with a rock in my shoe.

After I was diagnosed with Cancer, it was like I was sucked into a huge machine. Appointments were being made, procedures and tests happening. Unlike with the vets sucked into the maw of the VA scandal, I haven’t waited a minute for anything.

There’s a cost for that, however, as the insurance statements arrive, signalling the start of the “Who’s paying for this in the long run” kabuki dance. Don’t get me wrong, I have fantastic doctors. The two hospitals where I’ve had tests and procedures are clean, accessible, and welcoming. The workers, to a person, competent, efficient, caring. I haven’t met a soul that’s gotten on my nerves – other than the one appointment lady from my earlier post. However, we’ve yet to meet.

One of the best pieces of advice that we’ve gotten is to start a binder, and take notes. There’s a ton of information to absorb. And it turns out, when we looked at my wife’s notes we had forgotten a pretty important piece of what one of the doctors said when it came to nutrition boosters. Basically, the stuff he was recommending isn’t found at the local Kroger. Same brand, not same type. We’ll get back to that in a moment.

A power port

Chemo and Radiation doesn’t happen like a tooth extraction, or other procedure. There’s a lot of planning and some pieces parts that have to be in place before everything starts. First is, for Chemo they install a “Port”.  This device is essentially a docking station for Chemo. It prevents the nurses from having to find a vein for an IV every time. Just like with a junkie, too many hits on a vein with an IV needle and it collapses, making it unusable. By using the port, access is always there and working painlessly. More or less.

The picture doesn’t do it justice. In reality, it’s under the skin. (Google it!). But that line travels under your skin, over your collarbone, and into your jugular. It’s as uncomfortable as it looks. If you turn suddenly, or roll on that side when sleeping, you feel it like the reaper probing your neck.

The next thing that had to be installed was a feeding tube. Since my head will be blasted with radiation, my throat will be sore. In addition, I’ll lose my appetite and won’t want to eat as many calories as I will apparently need. There’s a small chance, also, that things could go pear shaped and I can’t eat at all. This is a preventative step – it’s there if I need it. The thinking here is that if the time came during this process where I needed it, it would be more painful, and the learning curve using it would interfere.

Feeding tube. Not mine.

That made sense. Now that I’ve been through it, if I weren’t feeling well, this process would be a suck-factor accelerator.

And, it too is every bit as uncomfortable as it looks. Sore isn’t a good description of the first days after it’s install. And since it tethers your stomach, you feel every move. It’s especially weird when you wake up hungry. That growling stomach moves the tube. And, if it’s on the opposite side of your port, you can pretty much give up sleeping on anything but your back.

Another issue with a feeding tube, at least mine, is that it made an already sensitive stomach much more so. So now even mildly acidic or spicy food makes my guts feel like I went on a night long tequila and Mexican food binge. But this is where the nutrition boosters come in. They get shot into this port as well as liquefied real food. Yummy. Stomach issues without actually tasting the food, which I’m told will taste like eating rust soon enough.

The hospital called with two more appointments for me. Two ancillary things I remember chatting to the doctor (couldn’t find the notes), but not “must do” things as much as “good idea” things. I put the kiebash on those. Each one of these preparatory steps has a cost, and a benefit. The cost isn’t only in money, but time, pain, and spirit as well. Now I’m of a mood to get this pain train rolling, I don’t need to decide if I like the color of the paper in it’s bathrooms, so to speak. I get all these steps. Many have made sense. But I’m in worse mood, I’m uncomfortable, and tired. This race hasn’t started for real. And although I’ve managed to dig out the rock in my shoe, I’m starting out in worse shape than I could be, at least in my head.

So we’ll see. Since there was a bit of a delay this week, the good ship Misery will leave port first thing Monday.