STACEY’S JOURNEY

HI! I’m Stacey Spillum, owner of PURE hair + beauty lounge. I’m a wife and mother of 3 little sweeties (11,8 &and 5).

On April 5, 2022 I was getting into the shower and felt an itch on the outer side of the right breast. As I grazed it, it felt tender. I pressed harder and felt a blueberry size lump. As the day went on I pressed more and more on it and in continually felt more sore. That evening a messaged a client of mine that is a nurse practitioner. ‘Hey Jo, I think I found a lump’.

After a few questions, she didn’t hesitate and I was able to get in for a mammogram 2 days later. On April 7, 2022 at 38 years old I received my first mammogram. Proceeding the initial mammogram, I was asked to come back for a second, then an ultrasound, then a biopsy. It was at that time I had to ask the dreaded question… ‘it’s not good is it?’

They then confirmed to me that it was definitely NOT a cyst or gland and that they are anticipating the results in a few days to confirm that it is CANCER. That was one day in time, a combined 4 hours, that will forever change my life. And so in fact that’s what it was… CANCER. I was diagnosed with Invasive Ductal Carcinoma.

Everything from that point forward was a whirlwind. LOTS of appointments, biopsies, tests, scans and FEAR. It took 5 weeks to get all of these things put together to give us enough information to make some decisions on how to move forward. Here’s what we knew-

-BRCA negative

-ER/PR positive, HER2 negative (my cancer was the most common. 80% of breast cancer are in this

category which means my cancer is fed by hormones and is said to be the ‘better’ type to have)

-My tumor was looking around 3cm, MRI and biopsies confirmed at least 1-3 diseased lymph nodes in

arm pit.

-Elston-Ellis tumor grade 2 (how aggressive it is on a scale of 1-3)

-PET/CT scans confirmed no known metastatic disease elsewhere in the body

With confidence I made the hard decision to begin fighting this CANCER by removing it first. On June 1, 2022, I had a double mastectomy with immediate implant reconstruction. Because of my placement of tumor and conservative sizing desires I was a candidate to have the immediate reconstruction. During the 9-hour surgery, my surgeon continued to have more and more lymph nodes come back from pathology positive for disease so she continued on with a full axilla dissection.

All in all, my surgery was longer than expected but all went well. So now it was a 2 week wait for a full pathology report to come back to let us know officially how large the tumor was and the amount of disease spread. This would give us an official staging and a treatment plan.

On June 16, 2022 the official report was in and they were tough to digest. My tumor was 4.1cm and 18 of the 24 lymph nodes removed were positive for disease. This put me at Stage 3B and grade 3 on the aggressive tumor scale.

Never in my wildest dreams would I have thought the small chested 38-year-old ME would be diagnosed with STAGE 3B BREAST CANCER! But sadly, I was, and only one way to get out of it…. FIGHT. I was suggested to begin 8 rounds of chemo. (4 AC, 4 dense-dose TAXOL) Then follow it with radiation.

July 11, 2022 I had my first Chemo treatment. Every other week till mid October would be my course of action.

Chemo is rough!! Not fun at all. Not only a physical challenge, but a mental and emotional one as well. Life goes on for all those around you while yours comes to an abrupt halt. You are healthy and feel great one minute and the next you are in surgery and injecting poison into your body. Its all very hard to wrap your mind around as you see and feel your body change every day from this horrific journey. Constantly questioning the why and how. Trying hard to stay strong and positive for my little kiddos and all those around me.

Chemotherapy presented almost every symptom under the sun for me. Extreme dizziness, vision impairment, rashes, fainting, hemorrhoids, loss of taste, mouth sores, neuropathy (tingling/pain) in fingers and toes, puffiness and bloating, weight gain, nausea, fatigue….. just to name a few. October 17, 2022 will forever be a monumental day as my last day of chemo. I was celebrated with a huge surprise welcome home party by so many loving friends, family and my sweetest team members!

I enjoyed a brief break and began my 28 rounds of radiation on Nov 14, 2022. Being burned everyday is quiet a journey. It starts off by wondering if anything is even happening, then the redness begins, followed by itching and burning and ends with thinking your skin will literally fall off. I was adamant about the constant application of lotions to help with the burning. Your body is having cells burned and killed everyday to which it needs to discard the waste and immediately rebuilds new. So, this is very exhausting on the body. I experienced extreme fatigue along with nausea and diarrhea. But over all was feeling way better than Chemo!

December 21, 2022 was my last radiation treatment and I celebrated by officially ringing the bell with my family! YAAAYY! We took off after Christmas for a relaxing trip to Mexico to celebrate!

As I settled into what a non-treatment life would look like, I had some new challenges to overcome.

First was to begin the recommended adjuvant care plan (treatment after chemo & radiation). I was recommended to start a drug called VERZENIO for 2 years. This drug is known for stage 4 metastatic breast cancer, but studies have shown great risk of reoccurrence reduction for stage 3 patients. This drug is also known for gastro toxicity among other challenging side effects. Within 3 days of this drug, I was in the ER with an intestinal infection. Ugh, can’t catch a break vibe for sure. But some antibiotics and a lowering of my dose and I was finding a new normal. I experienced extreme nausea and dizziness on a daily, which resulted in weight loss and an understanding of my body that even if I don’t feel like I can, I have to eat. I also began a drug called LETROZOLE to eliminate hormones in my body. I will remain on this for 10 years.

February 26, 2023, I had a follow-up PET scan to confirm our hopes and assumptions that I was disease free…. And it did just that! Nothing popped up and I was confirmed NED!!

Proactively, and with the help of my team, I decided to have a full hysterectomy April 28, 2023. Remove it ALL! This would further more eliminate hormones and prevent my cancer from popping up in any of those other women organs! This also helped eliminate the need for a monthly shot called LUPRON that medically put me into menopause since I was only 39 at the time. Now I’m legit in menopause. UGH.

This surgery was harder on me than I had expected. Not only physically, but I was struggling a lot mentally going into this surgery. Which for an outsider would seem odd. I just finished all my treatments; I was confirmed NED and I was getting back to normal life. Seems easy…. Be happy, be excited… your alive!!

This is the thing many people don’t talk much about. It’s like the after shock of an earth quake can almost be as bad as the original, its just you are already dealing with the aftermath of the first hit, you don’t realize how bad the second is.

From diagnosis to treatment, as a cancer patient you are rallied around and supported with so much love and care. You have so many people cheering you on and checking on you. Additionally, its obvious you can’t function how you used to, so the expectations of you are less as you put our focus on your health and this fight in front of you. But the trauma that I experienced while I was operating in a ‘fight or flight’ constant state of mind comes in like a tidal wave given, I was too busy fighting to deal with it at the time. Everything finally calms down and you have time to feel, think and grieve the life and body you had. You start to realize the trauma you experienced and all the pain, tears and fears you had all along the way. Additionally, you are done… so you should be ready to jump back to life as you once knew it. There is a big expectation on you for how you should be.

February through June 2023 was the hardest mental struggle I’ve experienced personally in my life. Then, throw a life changing and irreversible surgery in there while you’re at it! But, with the help of my husband being unbelievably supportive and aware, I finally snapped out of it. And for me, that was what it took. I’m very lucky. I had just had enough. I was tired of being tired and sad. I was waking up everyday counting down the hours till I could get back in bed. I was focusing on all the things cancer took away from me and all the things I couldn’t do any more. So, I had to shift my mindset. And it takes a lot every day to consciously choose to shift my mindset. Somedays are defiantly better than others, because let’s face it… Cancer took a lot from me and the life I once knew. The most significant… my career and my life’s passion….. DOING HAIR.

I had 24 lymph nodes (18 with cancer) removed under my right arm. My cancer was an over achiever and spread like wildfire under there. Lymph nodes serve as a drainage system to move important fluids around in your body. Removing that many in my armpit left me with little to no ability to do that in my right arm… so fluid collects resulting in pain, pinched nerves, and limited mobility. Medically it’s call Lymphedema… I call it a fat dead arm. I do physical therapy and morning and evening routines to attempt to help lessen the discomfort. But, most importantly is watching for infection. With the fluid being stagnant, risk for infection is high.

Unfortunately, the side effects from surgeries, chemo and radiation have short term and long-term effects. In addition to the lymphedema, the scar tissue from surgery and damage from radiation has caused pain in the right chest wall and under arm. I will have surgery October 4, 2023 to try to mediate some of this discomfort.

All in all, there is not a better flex than to have conquered what has been put in front of me. But the reality is also paralyzing. Many women just like me have reoccurrences, fight a second or third or fourth time. Many live with more challenges than me. Sadly, many will leave us all to early due to this terrible disease and not for a lack of fighting. And unfortunately, many more after me will continue to be diagnosed and have the unfortunate challenge ahead of them. I truly believe with the right awareness and some self-diligence; we can significantly minimize late-stage breast cancer diagnosis (stage 3 &4). Know the warning signs, pay attention to yourself, go to the appointments, take immediate action, advocate for yourself and please make sure to tell your friends. We need to take care of each other and hold each other accountable to put our health first!!