The Day I Found Out I Needed Chemo
You hear cancer, you probably assume chemo. But as HealthCentral’s Sabrina Skiles found out, treatment IRL looks different than the movies.by Sabrina Skiles Patient Advocate
Hair loss. Wigs. Fatigue. Sickness. Heartbreaking. These are just some of the words that swirled around in my head on the day I found out I needed chemo.
When you hear the word cancer, you automatically think chemo. At least that’s how it was for me. And being a 35-year-old happily married woman with two young kids, my next thoughts were, “my husband won’t find me attractive anymore,” and “what are my boys going to think?”
If you’re going through this, and you’re thinking that, too, I’m here to tell you, it’s OK. Those thoughts that you’re having about your appearance and about feeling sexy for your husband are not vain. You are not a terrible person for wanting to keep your beautiful hair and eyelashes (that was my thing!). You’re just human.
And it’s normal to worry about how it will affect your kids—of course you worry. You’re a mom. But really, you don’t need to. Your kids will always recognize the brave, strong and beautiful woman you are. Read that again.
I Have Cancer, Do I Need Chemo?
When breast cancer spreads to your lymph nodes like it had with mine, chemo is a must. It’s just deciding which chemo drug (yes, there’s more than one) and how many sessions you’re going to have. I wish I could tell you that taking the guessing out of whether or not I needed chemo made it easier. But it didn’t. I remember my doctor explaining the course of treatment I would need. It just sounded like a repetition of words I didn’t quite understand yet. Adriamycin. Eight weeks. Extreme fatigue. Dose dense. Port placement. Surgery. Taxol. 12 weeks. Neuropathy.
I held my husband’s hand, while tears streamed down my face. The doctor just kept talking. I wanted her to finish. I felt like I had done something bad and was sitting in the principal's office. You know that feeling. They keep talking and you really don’t know what to say and you just want your parents to come rescue you.
Thankfully, my doctor was very patient. She wrote everything down—I still have the sheet of paper and reference it a lot when friends and family ask about my treatment. Arming myself with information and being able to explain it back to everyone made me feel like I was in control. That’s the thing about cancer. You feel like it takes control of your life. And any little thing that makes you feel like you are still in charge, you grip with an iron fist.
First Things First
The way chemo drugs are administered is either through a port that is inserted in your chest or intravenously. (You and your doc will decide which way to go.) If you remember from my first post, I had a lumpectomy. During this surgery, they also placed a port on my left side. Two birds, one stone. You gotta find humor in the little things, ladies! I was glad I didn’t have to have a second surgery just for the port.
While many breast surgeons place the port just below the collar bone, my surgeon put it a little lower on the left side so that it would be hidden under my bra strap. This way, I can wear tank tops or a bathing suits with confidence, she told me, because the port—and later my scar—will stay hidden. When she mentioned that to me, it brought a human element to this whole crazy #cancerlife. I appreciated her taking the time to think that through.
It still feels so weird having the port in my body. It’s a foreign object. I’m still not used to it. I’m counting down the days when it can be removed. But it does make administering the chemo drugs and drawing blood much easier. By the way, make sure to ask your oncologist to provide you with a lidocaine cream prescription. You rub the cream on your port site at least an hour before your chemo infusion. This helps ease any discomfort that may come when accessing your port. You can also see my five tips for starting chemo.
It’s Not Like the Movies
Let’s just debunk this myth right now. Sitting in the chemo chair is not like the movies. At least not the ones that I have seen, where you’re sitting right next to someone else getting chemo. It’s also not like the newest episode of New Amsterdam where Max gets chemo and is sitting there playing cards with his chemo friends. I was like, “Oh cool, maybe I’ll make friends like he did.”
But honestly y’all, I’m glad it isn’t like the movies. I wasn’t sure if I was going to feel up to “entertaining” or “making friends” with others. This is completely new to me and I wanted to tackle this by myself, no social strings attached! My sister, husband, and one close family friend are the only people who come with me to my treatments.
This Is How Chemo Really Is
At the first hospital when I was still living in Houston, I was in my own private room, and I’m so glad I was. The first round of chemo I received is called Adriamycin, a.k.a. A/C, a.k.a. The Red Devil. I don’t know who named it that, but I kept reading The Red Devil everywhere which doesn’t exactly evoke positivity! The first time I said those words to my nurse, she said, “No, we like to call it the red warrior.” From that day on, it was the red warrior. Changing the association of that chemo medication was probably the best thing I did for mental health. Instead of thinking of it as the devil, it was a warrior helping me along this journey.
The chemo infusion room in my new hospital in Colorado is an open layout, but you still have your own private space. When you’re meeting with your breast surgeon and oncologist, they will most likely give you a tour of the infusion center where you’ll get your treatment. If not, ask so you can feel comfortable before that first day.
Before I got my first treatment, I had to have labs done to check my blood to make sure my white blood cells were in the right range to get chemo (you’ll hear this a lot). This can be done a day before or the day of your chemo infusion. White blood cells help fight infections, so if they aren’t high enough, it means your body might not be strong enough to fight off any infections that result from chemotherapy.
Once my labs were done, I received “pre-meds” and steroids via an IV. The pre-meds help with any allergic reactions that might happen, and steroids are used to treat and prevent chemotherapy-induced nausea. This took about half an hour (it typically takes anywhere from 20 to 45 minutes). My advice: Always ask your nurse or doctor which pre-meds and steroids they’re giving you and how long they will take to administer. It will give you a sense of relief — and control!
Next, came the actual chemo drug. Receiving chemo took three hours, from start to finish. That can vary, though, depending on your weight, height, and type of cancer. Ask your nurse how long it will take. Don’t be shy!
And with that, my day of chemo was done. Sounds easy, right? Sort of.
Tips I’ve Learned
Having gone through 13 rounds of chemo now, I’ve learned a thing or two along the way. For example, make sure to bring a family member or close friend with you to at least the first appointment (my husband came to my first; my twin sister sat with me through my last). Why? Well, you don’t know how you’ll react to pre-meds and you don’t how how you’ll react to the actual chemo drug. You want someone there who can be a support system for you so you don’t have to go through it by yourself.
The pre-meds I took before my treatments included Benadryl, which knocked me out. So I was glad someone was there to talk to the nurses when I dozed off (and take me home when I couldn’t drive). If, for whatever reason, someone can’t be with you at any of the appointments, tell your doctor or nurse: There are many resources, like the American Cancer Society Road To Recovery program, that connect you with someone who can drive you to and from appointments. My insurance had a program for this as well.
As for what happens in the days between chemo, it goes something like this: Eat. Drink. Sleep. Repeat. Your body has just been through a lot and you really don’t know how it will react. Make sure to listen to it and honor what it needs.
For me, each round of chemo got tougher on my body. Days two through five after treatment were the worst. I was extremely fatigued, had very low energy and a very small appetite. Those were also the days my tribe came together to help me. My sister picked up my oldest son from school, helped with baths, and made dinner for all of us—and made sure I ate. My mother-in-law picked up my youngest from school and let him stay the next few days with her. That way, I was able to stay on the couch, watch TV, read a book, and get the rest I needed. It was extremely hard emotionally because I didn’t like feeling as if I couldn’t take care of my kids. But I knew I needed solo time to get stronger and be able to take care of them later.
And that’s my last piece of advice: Be OK accepting help. If your Aunt Mary wants to bring you dinner, just say yes. If your neighbor offers to clean your house, just say yes. For me, that meant letting a close friend set up a cleaning service for me and having my husband’s coworker bring us dinner after work one day. That meant having a “couch party” with my boys, or what they lovingly called our TV-watching-because-mom-needs-rest days.
Remember, it’s what the doctor ordered.
What’s an Oncotype DX Test?
To decide whether or not you need chemotherapy, you’ll likely take an Oncotype DX test, which evaluates your risk factors and arrives at a recurrence number (the odds of your cancer coming back), which then falls somewhere on an Oncotype sliding scale. Here’s how to interpret the numbers if you are a younger woman (50 and under) with breast cancer:
Recurrence Score of 0-15: The cancer has a low risk of recurrence. The benefits of chemotherapy likely will not outweigh the risks of side effects.
Recurrence Score of 16-20: The cancer has a low to medium risk of recurrence. The benefits of chemotherapy likely will not outweigh the risks of side effects.
Recurrence Score of 21-25: The cancer has a medium risk of recurrence. The benefits of chemotherapy are likely to be greater than the risks of side effects.
Recurrence Score of 26-100: The cancer has a high risk of recurrence. The benefits of chemotherapy are likely to be greater than the risks of side effects.