For a while now, I’ve been thinking of writing a post that describes what cancer is like for Eli and our family. I had preconceived notions about cancer and treatment before we got to experience it up close and personal, so it isn’t surprising when others we talk to have questions.

Elaine’s preconceived notion #1:

Cancer treatment makes you feel sick most of the time.

I’ve learned that how one feels during cancer treatment varies from person to person and depends a lot on which particular meds one is taking. For Eli, the meds that make him feel nauseated are administered rarely and he recovers within 24-36 hours of receiving this particular set of chemo meds. I don’t want to make it sound easier than it is, but Eli usually doesn’t want to take anti-nausea meds by the afternoon following these particular chemo meds, which usually end up being administered in the evening.

The rest of the chemo meds he receives usually don’t cause nausea. So, for weeks at a time, Eli has little or no nausea. He gets tired more easily than before, but is generally eager to be doing things.

Elaine’s preconceived notion #2:

Cancer is painful.

As it turns out, it depends. Whether cancer is painful depends on the type and location, whether it is affecting other parts of the body, how advanced and many other factors. Eli’s cancer initially presented with one, generally non-painful, symptom (swollen lymph node). When he developed a second symptom, which led to his diagnosis, no pain was involved, even though it looked like it should hurt (swollen leg).

When Eli goes in for one of the more intense chemo treatments and is admitted to the hospital for an overnight stay, they always set a pain goal to which Eli sees no point. For him, it is always about nausea management for those more intense treatments.

The only pain we’ve dealt with is related to the initial biopsy and the more recent tumor resection, neither of which was directly caused by the cancer or chemotherapy.

Elaine’s preconceived notion #3:

Chemotherapy makes you go bald.

When Eli askee the doctor if he would lose his hair, she responded saying, “100% guaranteed, yes, you will lose your hair”.

This is a common assumption and is frequently true, but not all chemo meds have this side effect. Eli happens to be on one of the meds that guarantees hair loss, but some chemo meds only cause some hair loss or none at all.

Elaine’s preconceived notion #4:

Chemotherapy drugs are pretty much all the same and treatment lasts until the cancer disappears or until the meds stop working.

I had never thought much about what chemotherapy drugs were other than knowing they are pretty much poison designed to kill fast growing cells. It never occurred to me that there are a large variety of different medications that are considered chemo meds. I wasn’t really surprised by the variety of chemo meds that comprise Eli’s chemo regimen, but I did feel ignorant about the finer details of how different each cancer can be treated.

In reality, specific chemo meds are used in specific regimens for specific lengths of time, all dependent on which cancer is being treated and which stage or risk category the cancer is at the time of diagnosis.

I am not an expert on cancer meds, but I do know that Eli’s chemo regimen consists of three different chemo meds administered over the course of 42 weeks, all at specific times over the course of treatment. Even the timing of radiation treatment, in conjunction with chemo, is precisely timed at a particular point in the chemo schedule to avoid excess toxicity. Eli’s blood levels are monitored on a regular basis to inform the doctors as to whether a delay or blood transfusion is necessary.

The general idea is to administer the poisonous drugs according to the predetermined schedule unless it is too toxic, at which point appropriate measures are taken to get the body healthy enough to tolerate more poison.

One of the medications Eli takes occasionally is administered orally in liquid form. When asked what it tastes like, he responds, “like a bee sting”. This is a very creative way to describe a taste, and doesn’t make sense to someone who hasn’t tasted the stuff.

He threw up one of his doses once, a couple minutes after he had swallowed it. I used gloves to clean up the mess, but wasn’t careful enough, so a very small drop splattered on my wrist. It irritated my skin and left me with a rash for the rest of the day. Yes, I believe Eli when he says it tastes like a bee sting.

Do you have any preconceptions about cancer and its treatment?