When Patient Becomes a Verb

Today, my wife completed her second week of healing (radiation) sessions, so one third of her radiation treatments down. Although she has experienced very minor side effects (mostly light fatigue), we’ve come to understand why they use the term patient to describe receiving medical care. The dictionary tells us that the root of the word patient is pati (to suffer). In the medical setting, I have usually thought about patient as a noun; but after two weeks of these sessions, we’ve really experienced it more as a verb.

The actual radiation treatment is very short, but the full daily process (medications, travel, waiting (and waiting) and finally radiation typically takes about 1/2 the day. This is a minor annoyance for the “Driving Miss Lisa” transportation team, since each of us generally takes her once a week, but my wife, obviously, has to do it every day. She must be the patient patient, who suffers doubly.

Here are a few tidbits of a typical day:

1) The medications need to be taken in a prescribed sequence and timing. She needs to plan eating around the medication timing. Often that means missing a normal meal time and even taking chemo pills on the drive down to the hospital. My wife is a born rule-follower, so she has tried to follow the timing very precisely. Luckily there is some margin for error, since it has not been uncommon for the actual radiation to be as much as an hour later than scheduled.

2) They want us to arrive 15 minutes before her scheduled appt, but we also leave additional time, since it is difficult to predict the traffic. Hence she often arrives well before her appointment time. When she checks-in, she is given a beeper (like at the Cheesecake Factory). When the beeper goes off, we head back to the gown changing area, so my wife can put on a hospital gown (actually two - one forward and one backward). She is not a fan as they lack style. She once asked why the gown is necessary, since they are radiating her head, not her body. They said it was their procedure and allows them to easily identify you as a patient. I could be wrong, but I doubt anyone who is not a patient is looking to sneak in for a quick radiation session.

3) Once in the gown, there is another waiting area and another wait for the beeper to go off. This indicates it is time for her to go to her designated radiation room, in her case Room 4. Lisa is receiving Proton Radiation Therapy which allows them to control how far into the skull the radiation goes so what follows may not apply to other radiation types.

Outside the room there are four lighted signs, like you would see in a broadcast studio, but these say: BEAM OFF, BEAM READY, BEAM ON & X-RAYS ON. One of the causes of some delays is that there is just one Cyclotron, that generates the Proton Beam, (reasonable since it is 3 stories high and weighs 60 tons), so the five treatment rooms all share one Proton beam. If there are any issues with a patient in one of the rooms (typically getting them in the correct position), it affects all the other patients.

On one visit, I got a chance to accompany my wife into the room to see the setup. It is very nice and high-tech with wood paneling and cool lighting. If you have to get radiation, you might as well do it at the Four Seasons of medicine. She doesn’t get to enjoy the ambiance very long, since she needs to put on her full-head mask that they then attach to the table -- so the radiation beam hits the correct spot. Once in position, they take an X-Ray which is used to double-check the positioning. “Measure twice” seems pretty reasonable when directing a high energy beam into your brain.

4) When done, a quick change and we can then return the beeper (required for parking validation) and we are out of there. Unless it is Monday (typically my day to take her), when she also sees the radiation oncologist.

Although time consuming, the radiation treatments have not been bad and my wife is feeling fine. She does experience some of the expected side effects. Some fatigue which might just be from the grind of her daily ritual. Some head/skull pain that seems to get worse as the week goes on, but is easily managed with some Tylenol. The most upsetting side effect is that she has started to lose quite a bit of hair in the radiation area. My wife has a lot of hair and so it is easy to cover the growing bald spot but she will have to be patient again while she waits for the regrowth of this hair.

About the Author: Douglas Schoenberg is the Founder and CEO of SofterWare. His wife, Lisa Schoenberg was diagnosed with GBM in August of 2024. The Schoenberg’s have been very busy since Lisa’s diagnosis and surgery with their new mission in life — improving the treatments and resources available for GBM patients.