If you don’t know part of my story, here’s a quick recap. In 2021, I expressed to my doctor that something wasn’t right. I received a diagnosis from a different doctor. It was a logical conclusion based on tests and their experience. When I went for my annual visit with my primary care doctor, I kept saying this doesn’t seem right. After several blood tests, a referral, and an MRI to rule out a tumor, they found a walnut-sized tumor on my pituitary, crushing my optic nerve and pushing into my brain.
Surgery was scheduled. Then seven months later, after I started feeling better, I was cleared for radiation. Knowing nothing about radiation, I thought it would be 2-3 times a week for 2 weeks. Nope. Every weekday for six weeks. Here are the six lessons I learned.
1 – Following Care Instructions Doesn’t Make You Weak
Working in medical devices and MedTech, I know from speaking with doctors that patient compliance with treatment and aftercare is a big issue. I’m not talking about the patients who need help with aftercare instructions.
People decide that they’re okay or want to be a hero. The doctor is being overly precautious and silly. So they continue doing what they want or return to regular activity before they’re ready. Doing that can prolong recovery by causing new injuries or not allowing the body to heal.
It’s not a weakness to stop. Radiation doesn’t have the same immediate impact as chemo, but when it kicks in, it goes full throttle. The side effects from radiation start about halfway through the treatments, and they ramp up. They don’t begin to subside until about a month or two after treatments end. It was primarily fatigue, an itchy, swollen face and scalp, and nausea for me. I was in bed by 7 o’clock at the latest.
I couldn’t push even if I wanted to. So I didn’t. I decided how much I could do for the day and stopped. Because I was still working during radiation, I had to build in breaks throughout the day. If I felt sick, I stopped. I once ended a meeting to hang out in the bathroom, if you know what I mean.
Listening to your body and doing as it asks doesn’t make you weak. It makes you your best advocate and your own hero.
2 – The Body is Designed to Heal Itself. Stop Stopping It.
The body is remarkable. It is designed to heal itself. It wants to heal itself. The body’s default is to operate at peak efficiency. When damaged, the body immediately goes into action to heal the injury. Though inflammation accounts for many chronic diseases and other ailments, it’s the body’s healing response. The inflammation is meant to subside. But it doesn’t because our actions continue to cause damage.
Some of the ways we continue to cause damage are smoking, drinking alcohol, ingesting sugar, being sedentary, and lack of sleep. You get the picture. When something like radiation comes along, you will struggle to overcome the effects if you don’t help the body’s healing process.
When I felt tired, I slept—a lot. To help my itchy, swollen face, I started getting into advanced skincare techniques. And for the nausea, the doctor prescribed something. The nausea wasn’t too intense, but it was more annoying than anything. I increased my protein intake and ditched alcohol.
When I started feeling better, I kept the new skincare routine and rarely drink now. Unfortunately or fortunately, the drinking was my body’s decision. I don’t tolerate alcohol like before. Most of the time, it makes me feel sick after half a glass.
The body wants to heal itself. Let it. But if you are constantly causing it injury, it will stay in a state of inflammation that ultimately has a negative impact. So ease up and let it heal.
3 – Radiation Sucks, Not Having Radiation Sucks
My circumstance required radiation because of the size and location of the tumor. The surgery was very delicate. The radiation was even more delicate. The margin for error was 1mm. It required that a custom-fit cage be placed over my face to stabilize my head by attaching it to the table. I could move the rest of my body, but my head was immobile. Claustrophobia activated.
The wonderful tech talked me through it the first time. After they got me all strapped in, I called them back into the room to let me out. I was not down for this Hannibal Lecter contraption on my face. We tried again. This was my routine every Monday through Friday for six weeks.
It sucked.
The techs were awesome. Eventually, I became accustomed to it. By the last couple of weeks, I was too tired to care. My body temperature was all over the place. I would get so hot I would lay on the cold tiles on the bathroom floor. Then I would get so cold wrapped in blankets. Then mostly cold. I mean freezing up until about a month ago.
While the radiation will have long-term effects, the tissue would keep growing without it. That means I would be right back here in two to three years. My neurosurgeon emphatically said he was not going back in. The first time was dangerous enough.
Sometimes the cure is worse than the ailment. We have to weigh the risks and rewards and make the best decision we can. But we can improve our odds by taking care of the things we can control.
4 – People Still Expect 100% from You Because You Give It
If you’re struggling or think you’ll struggle, speak up! Though it seems to be a lack of empathy or sympathy, people will expect you to keep showing up at 100% if you keep showing up at 100%.
Due to staffing shortages, I still had to work through my treatment. My choice so that all of the work wouldn’t fall on one person. I worked with my manager to not operate at 100%. I scheduled breaks in my calendar. I even built into my accommodation request not to be on camera for meetings because my face was swollen. But that doesn’t stop people from trying.
One person scheduled a meeting during a time marked out of office. My treatments were in the morning, and that time was blocked as unavailable every day. I explained I have a medical accommodation; please choose another time. (Their calendar was jam-packed). They chose another time. Again, a time marked out of office. Again, I asked to choose a time that is not blocked. After they did it a third time, I declined the meeting.
If you don’t act like a hero, people won’t treat you like a hero. Define the boundaries you require for your care. If you don’t advocate for yourself, people will continue to expect 100% from you. The majority of people will understand and comply if you ask them. You don’t have to go into details.
5 – Take Care of Yourself Before the Diagnosis
The doctors have been amazed at my recovery. They asked what I did aside from following their instructions and helping my body heal. The real game-changer was going into the surgery already healthy. When my primary care learned of the tumor, she said the good news is that I’m healthy.
Initially, I thought that was one of those toxic positivity platitudes. That is until after the surgery. The importance of being healthy going in is understated. My body immediately focused on healing from the surgery. My blood work was a little shaky initially, but that’s all my body had to focus on. It didn’t have to try to manage chronic disease or anything else.
As a result, I was able to get back to walking long distances within weeks versus months. My muscle tone was good and could support my movements. My good health helped me through radiation and helped me keep my energy up more than I thought I could. Within five months, my hair and nails started growing like crazy. One of my doctors said she had never seen that after radiation.
Don’t wait for something catastrophic to happen. Take care of yourself now. If the body has too many things to focus on, the recovery will take longer. The treatment may not work as well.
6 – Stop Comparing Trauma
One thing I found odd is people comparing their struggles with mine. What I mean is, if someone were having surgery, they would say what they’re going through isn’t as hard as what I went through. But that’s not true. Every surgery is a trauma for the body. Every illness is a trauma for the body. My trauma is no better or worse than yours.
The level of trauma may be more or less extensive. Radiation has different side effect impacts. The oncologic radiologist handed me a paper filled with potential side effects. It was a lot. Then he drew a diagram that explained what side effects and to what degree I would experience with brain radiation. While I felt tired and nauseous, someone with a greater radiation area would experience that to a greater degree and with more symptoms.
It was okay that when I arrived at the Oncology Radiation clinic, others in the waiting room were sicker than me, and I still felt ill. It helped me keep things in perspective, but I didn’t pretend to be okay when I wasn’t.
It’s all trauma to the body. Don’t downplay your experience by comparing your trauma to someone else’s. If you feel sick, you feel sick. If you feel tired, you’re tired. It doesn’t matter why you feel that way or why I feel a different way.
One of the most important things we can do when we achieve something big is to celebrate. This isn’t one of the lessons I learned. I’ve always felt this way. Some people don’t like to ring the bell when they finish treatments. Me? I practically knocked it off the wall. Ultimately, everyone rises to the challenges in their life in their way.
