Breast Cancer Isn’t Pretty

We know that time of year when the leaves change, the air is crisp, the skies darken early… and there is PINK… everywhere. Ribbons, shirts, bandanas, food; you name it, it’s pink. We march, we chant, we hand over our money to Susan G. Komen. “Fight Like a Girl!” “Save the Tatas!” We see commercials and stock photos of beautiful women thriving, glowing, drenched in pink from head to toe, with beaming smiles plastered to their flawless faces. They cup their smooth, bald heads in their perfectly manicured hands, gazing into the camera with long lashes and bold brows. That’s not reality.

The real cancer isn’t what people want to see, it’s not easy on the eyes. It’s a multitude of things. Dark circles under your eyes from exhaustion and poor nutrition. Weight gain/loss from the lack of exercise and limitation of foods that are appetizing (usually things like potatoes, chicken tender, etc). Sores dotting the inside of your mouth. Skin breakouts due to the harsh chemotherapies wreaking havoc, causing you to look like you’re going through puberty again, including the top of your head. Hair that has fallen out in patches, looking like a baby elephant at the time (sounds cute, but it’s not). Finger and toenails discoloring, loosening, and sometimes falling completely off. Deep red, puffy, painful hands, or feet. Never-ending bloody noses. You are dry everywhere… and I mean EVERYWHERE. Your eyelashes are sparse, but partially there, making you look like an old baby doll whose owner plucked them out in a fit of boredom. It so, so much more than all of that too, but I digress.

In December 2018 I felt a lump when I gave a big bear hug to my SO when he got home from visiting family for the holidays. I got in with my GYN and she did a physical exam. Slightly concerned, she sent me to get a mammogram and an ultrasound. None of us were too worried though; my mom has a history of cysts, so we figured that was it. We remained calm, because there is nothing that irritates me more than someone who makes a big deal out of a lump, only to find it’s nothing, and then claim they had a “cancer scare.” (Please, for everyone’s sake, don’t ever do this).  They decided that biopsies were needed based on what they saw in the scans, just to be safe. The doctor set up an appointment for the following week to go over the results, whether they were good or bad because no one should ever get bad news over the phone, ESPECIALLY devastating news. (However, it’s common practice to get a phone call with results, and this practice should absolutely die). I was 28, young and healthy; I was training for a triathlon for Pete’s sake, it’s probably going to come back clear!

My mom went with me to the appointment (my SO was at a work conference across the country), and we got the worst words you could hear: You. Have. Cancer.  HER2+ Invasive Ductal Carcinoma, a very aggressive type of breast cancer that 5-10 years ago would have been a death sentence. This was the beginning of an onslaught of appointments, non-stop information, and literally no time to breathe or think. Within 24 hours I was talking with an oncologist about treatment options (well, more being told what my treatment would be, there are no options with HER2+ breast cancer. You either do the treatments, or die), and then being sent to a different branch of the hospital system 35 minutes away to make a decision about my fertility options and eggs. At this point in my life, I haven’t even thought about if I want kids or not, and now I have to decide what to do about my eggs. I made the (very expensive) decision to freeze my eggs. I went through a couple of weeks of fast-tracked hormone treatments, which involved me and my SO having to stab me with needles multiple times a day at specific times to ready my eggs for harvest. It’s extremely stressful on top of the stress of cancer. Once that was done, I had a port placed and my chemo started 2 days later, on a very fresh surgical site.

Chemo came just a few days before my 29th birthday. We had a party the weekend that followed to celebrate my birthday and to shave my head so I wouldn’t have even more trauma of seeing my hair fall out. I endured 6 rounds of aggressive chemotherapies. I actually GAINED weight during chemo, despite food barely being appetizing. So I was bald, sick, and fat; talk about kicking you while your down. Chemo made me lose my hair and almost all of my eyelashes and eyebrows. None of the whiles has come back the same. So for those who so very rudely say to cancer patients, “it’s just hair, it will grow back!” Just don’t. It’s doesn’t “just grow back,” it doesn’t come back the same. It’s been over a year since my last chemo and I still don’t have anywhere near my full eyebrows back. I still have issues with my finger and toenails loosening. I went through a single mastectomy and painful radiation. I still have a very uncomfortable tissue expander in, over a year later, waiting to have my reconstructive surgery in October.

Cancer forever changes you, and the loved ones in your life. It’s not something you ever get over. You mourn the life you had pre-cancer and try to navigate your new life. You live in fear of it coming back, and though that fear may quiet down over time, it will forever be in the back of your mind.

So what should/shouldn’t you do as a bystander to someone going through cancer?

Be part of a meal train.

Pay for a house cleaner, lawn, or snow removal service.

Don’t say “let me know if you need anything.” Just find a way to help and do it without being asked. We don’t like to ask for help, it’s uncomfortable.

Give money to a Go Fund Me that’s been set up (because our healthcare in the USA is abysmal and we can’t afford any of this on our own).

Do not offer stories of anyone you know who has been through cancer. It’s not helpful. Offer a contact instead so they can talk to a fellow cancer patient/graduate.

Don’t say someone “lost a battle with cancer.” The person’s strength has absolutely nothing to do with it, and this type of language can be extremely harmful, especially since we have zero control over the outcome. Simply say that they died from cancer, don’t sugar coat it.

Avoid toxic positivity: “Everything happens for a reason.” “It’s all going to be ok.” “You’ll be back to normal before you know it.”

Do not, for any reason, say anything like “save the tatas/boobies.” Save the human, not the body part that is trying to kill them.

Do not say “at least you get new/free boobs out of this!” or “oh, nice, you get a tummy tuck too!” This isn’t something we’ve chosen to do. Just refrain from any comments like that.

Do not comment that you love their bald head/short hair and that they should keep it. This just delegitimizes their pain and loss.

Just simply be there and LISTEN.

by msimenc

Maggie is a 30 year old breast cancer graduate. Lover of all things sweet. Bleeding heart. Very much a dog person. Regulatory Specialist by day, baker by night. She/Her.

Maggie lives with her wonderful partner in crime and their rescue dog Sawyer, who is a 100%, pure-bred mutt.

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