Words You Might Hear on a Cancer Journey

Let it be noted that oncologists and their friends often use words in unusual, unfamiliar, mysterious ways unknown to the general population. “Words you might hear” will stand in as an etymological broadening of such words.

Installment 1: Radiation

Simulation

Before radiation begins, there is a planning session called a simulation. No actual radiation is delivered at this time. In fact, the patient isn’t even in the actual room where radiation will be delivered. During the simulation, a cradle is created and tattoo markings are placed (see below), and the patient gets a tour of the facility. In my case, I also received a swag bag to bring every day containing a white robe (see pictorial tour) that I embellished subsequently.

First day of treatment

It isn’t really! They bring you in for another run-through (like a simulation in normal people language) to verify the setup from the simulation. I quickly re-named it the “dress rehearsal.” The bummer about this word use is that the course of treatment is specific, in my case, 30 treatments total. So the first day of treatment doesn’t count! Rude!

Cradle

A cradle is used during radiation. Sounds soft and cuddly, and that would be wrong. This cradle is custom molded to the patient’s body to bolster arms and maintain the posture/position required to deliver the appropriate dose of radiation to the desired body part. They are reusable and fairly nifty. You can see an example in the photo from the pictorial tour of radiation. Mine would be at the head of the treatment table nearest the stand mixer. The cradle has markings on the outside edges used to align it with the radiation machine.

Tattoos

These are not beautiful artwork tattoos, but rather registration marks. No choice of colors, they’re all black. They are placed by a radiology tech after determining latitude, longitude, and flatish, stable spots that are unlikely to change from day to day. Three freckle-like tattoos go on, one on each rib cage and one dead center sternum. For the record, these remain the only tattoos I have, and were acquired under protest. They are placed with a pre-filled ink reservoir with a needle. Disposable. These three dots line up with the marks on the cradle and the lasers in the walls and ceiling of the actual treatment room (very sci-fi).  All of that ensures that the radiation beam targets exactly the same bits each day, because bodies are mushy and weird.

Bolus

I thought I knew this word, but it has more meanings than I previously understood. In context, this bolus is a bit of material used to mimic skin during radiation treatment sessions. The bolus could be a gelatinous mat, similar to a reusable ice pack, room temperature. Or, as in my case, another custom-made, form-fitting bit of plastic, not reusable. Think: breastplate of righteousness and you’re on the right track. My dosimetrist preferred it because the soft one was not adhering to the skin as reliably as she wanted. Those pockets of air can burn the skin more and affect the ultimate dose. Either way, in the radiation suite, a bolus is neither swallowed nor pushed, let alone passed.

Dosimetrist

The most bizarre word, made of Greek parts with who-knows-what combining form! This word does not appear in etymology online. Help me out, Scripps Spelling Bee kids! A dosimetrist is in charge of monitoring the dose of radiation and its delivery. Like a pharmacist. She’s wicked smart because physics.  In any case, the word stuck out so I thought I’d share.

Photons

I know this word from my one and only physics class in college, which I enjoyed a good deal. Also from The Great Courses on the Higgs-Boson. My take away is as follows: particle, particle, photon, particle, field, wave, particle particle. At Lemmen Holton, radiation is delivered in a few ways. My dose came from photon radiation. Not electron, not proton. And now we have arrived at the end of my comprehension.

Less Shallow

A synonym for “less shallow” would be …. About half of my radiation treatments were less shallow. They want to radiate some skin, as cancer can recur in skin. Gotta burn that, Baby! Some lung tissue is also at risk. In pursuit of the less shallow dose, the radiation does not penetrate deeper, as the phrase suggests, but the shallower bits are not. Clearly there is wizardly magic that continues to elude me.

Radiation, Pictorial Tour

Lockers to the right, changing rooms to the left

Scheduling radiation is a trip. I chose a block of time (noon-3:00) for my usual radiation set. Each day I am given a time within that window for the next day's session. Printed on that half sheet of paper is any other appointment attached to radiation, eg: oncologist visit. I present the paper to the radiation tech who signs off or passes me off to the next agenda item. At the conclusion of the set, I trade in that day's agenda for the next day's agenda. Hence, my dance card.
I embroidered my robe. It became a conversation starter. I don’t know why I got one, but it was nice.

About scheduling. I chose a block of time (noon-3:00) for my usual radiation set. Each day I was given a time within that window for the next day’s session. Printed on that half sheet of paper is any other appointment attached to radiation, eg: oncologist consultation. I present the paper to the radiation therapist who either signs off or escorts me to the next agenda item. At the conclusion of business, I exchange that day’s agenda for the next day’s appointment. Hence, my dance card.

Wait here.

There is coffee available, but usually there is not enough wait time to bother with it. Across the corridor from the fireplace is one of four treatment suites. The bit you can see in this photo is where the techs manage what happens during radiation. They schedule patients in 15-minute blocks, meaning way too many people being treated for cancer. Everything from brain stem to bone marrow transplants, and me. They even have a way to radiate blood for transfusions so that recipients do not acquire infections from donors.

My main tech people told me (because I asked) that the mechanism that triggers this release is overly sensitive, and when it triggers, the entire department shuts down for the remainder of the day. It happens enough that my providers have experienced it. Inergen is a chemical that sucks all the oxygen out of the space.

Star Trek treatment room

As soon as I turned the corner from the alarm sign, this is what I saw. Where I’m standing there is a chair and side table to disrobe. There are lasers in the walls and ceiling that line up with the cradle* and the tattoos* on my sternum and either side of the rib cage. The table adjusts height and rotates on horizontal plane. A tech would place a bolus,* then everyone but me left the room. The only sounds are mechanical; this machine breathes as it goes about its business. There are lead “leaves” inside that adjust to shape the treatment area.

Stand Mixer

The machine also rotates as if the digital screen you see were the axis point. for 25 of the 30 treatments, I received 4 zappings, 2 energies from my left side repeated on the right side. The machine also takes x-rays every 5 treatments or so to check for any changes in the anatomy (Did I sign up for that?). I’d read Radium Girls about a year ago, not such a pretty picture! This monster has attachments too. More on that in another post. There is no radioactive material in this machine. The radiation is generated on demand electronically. A dosimetrist* monitors the photons* and the bolus* and there is math involved in magical ways that I heard but can neither reproduce or comprehend.

For our purposes here, nothing in this daily process is inherently painful. As the burns (which are cumulative) got more intense, positioning my arms above my head became uncomfortable, as skin does when it is burned and scars harden.

Words noted with an asterisk (*) will appear in a subsequent post.

On tap for July

I have finished chemo treatments! Now I’m waiting for side effects to subside, including tiredness and mild neuropathy (numb feet, sometimes painful). As a method of keeping one alive, I suppose chemo must work or they wouldn’t do it, but only the desperate should attempt it.

Yet to come this month, radiation will start with a “simulation” in which the machines are set up and my person is tattooed with marks for lining things up. Then I will start the course of 30 treatments. That means 5 times a week for 6 weeks. We expect that to begin around July 22 if all goes as planned. Fatigue and skin problems at the site are the big nasties with radiation.

In the meantime, hysterectomy is scheduled for July 17. Recovery is not too bad, no lifting (even laundry) for 6 weeks with no gym for 8 weeks given the type of gym I will resume ASAP. I am grateful to have it overlap the radiation, to compress the inactivity. I do have some physical therapy on offer, and that particular therapist will serve me very well restoring me to the life I’ve lost touch with since March.

This week I shaved what remained of the hair. It was still coming out and very patchy. Clean slate, no purple dye etc. We’ll see what comes back.