Name: Alison Gareh
Breast cancer stage: Metastatic Stage IV
Occupation: Self-employed web designer
Age when diagnosed with breast cancer: 42
Breast cancer type: Triple Positive Metastatic Breast Cancer
Treatment: I completed six months of chemo (Taxol) in March 2019, and have continued to receive Herceptin and Perjeta infusions every three weeks – and will for as long as they continue to work. I’m also on Tamoxifen, and I receive a monthly Zoladex injection. Oh, and I get a good dose of daily kitten therapy!
TELL US A FUN FACT ABOUT YOURSELF THAT HAS NOTHING TO DO WITH CANCER
I am absolutely terrified of heights, but I’ve jumped out of a plane five times, and off of a bridge once! None of this has helped me to overcome the fear (I’m still terrified), but THAT RUSH that you feel when your body does something that your brain is screaming at you not to do, is indescribable … and slightly addictive.
WHAT’S YOUR GO-TO PICK-ME-UP SONG?
That’s a hard one to narrow down. I have a super diverse ear. But pretty much any AC/DC song will pull me out of a funk!
HOW DID YOU DISCOVER YOUR BREAST CANCER?
I found a lump in my breast in July 2017, and my doctor scheduled a mammogram and ultrasound right away. The results came back clean (a grouping of benign cysts), which I didn’t question as I’ve always had lumpy, bumpy, cystic breasts. However, six months later when that lump had gotten larger and much more tender, my doc attempted to schedule another mammogram, only we were told that because there was no family history I would have to wait until July 2018 (1 year in between scans).
Looking back now, I obviously wish that I’d kicked up more of a fuss. But because I’d had clean mammos before, and even two clean biopsies in the years prior, I didn’t push. I didn’t listen to my gut.
And who knows if my situation might be different if they’d caught it in July 2017. Or if I’d insisted that they booked me for the follow up in December, instead of waiting the full year. Who knows. But it is what it is now, and I’m not going to change anything by dwelling on it. And while I don’t want my story to instill fear, I do hope that it gives someone (anyone) the courage to listen to their intuition, and PUSH. No one is going to advocate for you, better than you!!
WHAT WENT THROUGH YOUR HEAD WHEN YOU RECEIVED YOUR DIAGNOSIS?
It didn’t really register at first. I heard the words (“we found cancer”), but it didn’t compute.
Even though I’d just had a suspicious mammogram, and was called in the day after the biopsy to discuss the results, I honestly didn’t expect to hear that. I wasn’t even nervous going into the appointment (denial is obviously not just a river in Egypt).
So when I did hear those words, it was almost as if they were telling me that I had a mole that needed to be removed. It was so surreal. In the same breath though, my ears started ringing so loudly that I literally couldn’t hear the nurse practitioner. I could see her lips moving, but all I could hear was the ringing in my ears. After a short bathroom break, where I paced back and forth a few times and processed the news (kinda), I went back into the exam room and we got down to business.
And I took on a pretty clinical approach to everything from that point on. I had a “well, I’ve just gotta do what I’ve gotta do” kind of attitude.
WHAT’S THE CRAZIEST THING SOMEONE SAID TO YOU AFTER BEING DIAGNOSED WITH BREAST CANCER?
“Well, let’s hope for the best.” #facepalm
WHO IS YOUR BIGGEST SOURCE OF SUPPORT THROUGHOUT YOUR EXPERIENCE WITH CANCER?
I’ve got an incredible circle of friends and family … however, in this particular case, I think that I have been my best source of support.
I woke up the day after getting my diagnosis, and got to work! I had (and still kinda have) tunnel vision. I didn’t want to know stats or worst case scenarios, but I wanted to know everything else there was to know about my particular type of breast cancer – which actually changed three times over the course of that first month, before I started treatment. And then when I found out what my treatment protocol was, I spent hours upon hours researching different ways to manage, or avoid, the potential side effects. I incorporated a plant-based diet, and had a holistic (onco approved only) and an over the counter remedy for just about every side effect that the paperwork told me I might experience.
Did I go a teeny bit overboard? Absolutely. But it gave me something productive to focus on. And I did most of this myself. I very rarely asked for help. I certainly didn’t want any opinions. And I didn’t even want people coming with me to appointments or treatments. I think it was my way of maintaining some semblance of control, in a super out of control situation. And I also think it was my way of avoiding potential let down from promises/offers made but not kept. And that worked for me, and kept me sane in the beginning while I was figuring all of this out.
WHAT IS THE MOST DIFFICULT PART OF BEING A YOUNG WOMAN WITH BREAST CANCER?
Figuring out how to navigate my new normal.
I don’t feel “stage IV terminal cancer” sick, but I don’t feel perfectly healthy either. I’m also not the multi-tasking queen that I used to be – which is a tough pill to swallow. And I now have to plan a lot of my life (trips, etc) around treatment. Plus, there’s not a day that goes by, where cancer is not a dominating thought.
All of this is manageable, but it’s definitely not what I imagined my life to be at 43 years old. And as much as I want life to carry on the way it did before cancer, I don’t know that that’s ever going to be an option. My life is different now. And it’s different from almost all of my family and friend’s lives. They can all be there for me, but they can’t possibly understand – nor do I hope they ever have to. And that’s all been kinda difficult to wrap my head around.
WHAT’S SOMETHING UNEXPECTED YOU LEARNED ABOUT YOURSELF AS A RESULT OF HAVING BREAST CANCER?
I’m pretty bad ass … which is both good and bad. Good in the sense that even when shit hits the fan, I can handle it. But bad in the sense that I’m too stubborn to ask for or accept help most of the time. And while being a strong independent woman is awesome, I’ve come to realize (only recently) that letting people be there for me doesn’t make me weak.
Cancer sucks. And it can be super lonely and isolating. I had such tunnel vision at first, that I didn’t realize this. But now that I’m almost one year out of chemo, and the monomania has subsided a little, I’ve recognized that I don’t need to keep everyone at arms length anymore.
So yea, this is something that I’ve learned, and am trying to work on!
WHAT WORDS OF WISDOM WOULD YOU PASS ON TO ANOTHER YOUNG WOMAN WHO HAS JUST BEEN DIAGNOSED WITH BREAST CANCER?
There is no playbook to having cancer, so listen to your gut, be your own advocate, and don’t worry about being a pain in the ass. If something doesn’t feel right, or you’re not happy with an answer you’ve been given, ask again, or get a second (or even third) opinion! And do so unapologetically.