While we, at The Band, work tirelessly to bring you expert resource pages, sometimes the best advice is from someone who has been where you're standing. What follows is a mixture between a resource and a post.
I introduce to you, The Band, a Demo Tape.
Take what you need and leave the rest.
You've seen those commercials featuring celebrities shilling for diet plans? You know the ones, right? It's the commercials that show a now-slim and sexy celeb bragging about how this diet plan helped them lose 100 pounds.
They're the same commercials that, in tiny print at the very bottom of your screen, inform you "results not typical."
That same disclaimer should run in any piece about cancer treatments: there is no typical cancer treatment experience.
The following is a demo tape about my experience undergoing radiation treatments to the head and brain.
Two things make my experience with radiation of the head and brain unusual.
First, I actually didn't like my first oncologist. He blew us off as he told my husband that he "didn’t have time to hold our hands and walk us through everything.
I didn't make a big deal about it - I simply told my neurosurgeon that we had a "personality conflict" and asked how to go about changing oncologists.
It was the best decision I've ever made. Anyone with cancer should feel that their doctor has their best interests at heart.
Secondly, I needed a second skin graft before treatments could begin, which meant that my radiation treatments were delayed by a few months.
Once you've been diagnosed with cancer, you can expect several appointments with the oncologist before radiation treatments begin.
At your first appointment, the doctor or their nurse will take a detailed medical and family history. After that, you will discuss your cancer and your treatment plan.
After my first appointment, the oncologist scheduled a CAT scan to determine whether or not my cancer had spread. When the results showed an enlarged lymph node, he scheduled a needle biopsy as basal cell carcinoma does not show up in PET scans.
The biopsy came back negative and after deciding to change oncologists, the simulation appointments began.
Simulation (SIM) Appointments are the appointments during which your radiation team will prepare for your radiation treatments.
At your first SIM appointment, you can expect to be taken for a CAT scan. During this exam, you will lie on the table, while they will use the CAT Scan machine to pinpoint the area requiring treatment. There are no dyes used, which means that you won't have an IV inserted.
While the radiation team performs the CAT Scan, it’s very important to lie still so the team can accurately set the treatment area.
During your SIM appointment, the radiation team will create a mask which will be used to secure your head in place during treatments. This sounds scarier than it actually is.
The mask composed of a mesh-like plastic that will feel warm and wet as they mold it. It’s important to remember that while scary feeling, it is not painful. It may be a little uncomfortable, somewhat claustrophobic, but not painful, as it's not uncomfortably tight. However, it is snug.
When you're finished with each day's treatment, the pattern of the mesh will be on your face. Don’t worry; it fades after an hour to two. You can find a good description and images of what the table and machine look like and how the mask fits into the table here.
This is my mask.
When your treatments are over they give it to you to take home if you want to (you don’t have to take it if you don't want to).
I did take mine home.
Eventually, when I have a moment of creativity, unlimited time and money, I’m going to bedazzle it and frame it as a testament to what I’ve overcome.
This is the mask from the front, as it will look on your face and the inside as it fits over your face.
This is the mask from each side.
After this appointment, you'll have a few more follow-up SIM appointments to tighten your treatment plan.
These appointments are to ensure that everything is perfect; that the radiation team will be treating the correct area. Clearly, the radiation team doesn’t want to radiate healthy tissue and they don’t want to miss any of cancer cells, either. Be patient, the appointments become more streamlined as the process goes on.
During the SIM appointments, and for the first few radiation treatments, you can expect to be on the table for a longer period of time. Ninety minutes for the SIM appointments and an hour for the first few radiation treatments. When those are done, it should be about fifteen minutes for the daily treatments. During the SIM appointments, you will receive your treatment schedule.
I requested morning appointments, but remember: nothing is set in stone.
At my first radiation treatment, the technicians set me up, called my oncologist to check everything out. She made some changes and they treated one side of my head.
The radiation technicians set me up again, called my oncologist back in, she made her changes and they treated the other side of my head. The technicians set me up and did a short treatment and finally - almost two hours after walking in to the hospital - I was done.
My oncologist wanted to tweak a few more things, so my second appointment was moved to the afternoon as well.
Be prepared to be flexible - don't focus on the end date too much, radiation machines break down, adjustments need to be made to the treatment plan.
There is no standard radiation treatment day.
One day each week, the radiation team will take X-rays to ensure they're treating the correct area. It's important to note: these X-rays do not check the growth or shrinkage of the cancer, they are expressly performed to verify that the correct area is continuing to be treated.
Another day, you will see your doctor for your weekly checkup. Remember that there are ups and downs and days of feeling sorry for yourself, but there are plenty of good days, too.
It's important to remember that the radiation treatments aren't painful and there are no loud noises like an MRI.
Things To Remember During Your Radiation Treatments:
You are going to be tired. Of course, not everyone is the same and I wasn't "can’t-get-out-of-bed" tired, but I did find myself napping in the afternoon. The nurse told me the fatigue came from my body working to regenerate the surrounding, healthy cells the radiation was killing along with the cancerous cells.
The list of side effects was terrifying: brain damage, blindness, nausea, and so on, but it’s important to remember that not all side effects are common and that not everyone experiences all or even some of them. Thankfully, I only experienced mild nausea and mild burns on the skin on my head and left ear from the treatments. The burns can be treated with an over-the-counter Vaseline-like moisturizing product, Aquaphor, which is available at most pharmacies.
Once treatments end, you will have follow-up appointments and additional testing to ensure the cancer is gone and stays gone. I'm scheduled for follow-up MRIs every three months for the next two years.
I know it’s all so insurmountable and terrifying, I get it.
But I made it through radiation treatment and so can you.4 Comments