Today’s guest author is someone very near and dear to my heart. Holly and I met in high school, and she remains my soul-sister to this day. In honor of October being Breast Cancer Awareness Month, we are kicking off our “Queen Bee” series with her story – Life lessons learned from the minefield of breast cancer. Prepare to be encouraged!
Life Lessons Learned From the Minefield Of Breast Cancer
by Holly Wintrip
My breast cancer journey started long before my diagnosis at age forty-five. During my thirties, my friend Amy was diagnosed with breast cancer in her left breast. Amy was a kick-ass woman from Texas who ferociously loved her boys, family and friends. She was never afraid to speak her mind, always helping other people.
When Amy was diagnosed, she insisted I feel her tumor so I’d know what it felt like. She endured a lot during her journey, but I remember her distinctly telling me she should have had a double mastectomy instead of a single one because her cancer showed up in the remaining “good” breast forcing her to have another major surgery.
Sadly, Amy passed away in October of 2005, but little did she know that her words and actions would later save my life.
A lump in Las Vegas
In September of 2015 while on a trip to Las Vegas, I decided to do a breast self-exam. You know the kind where you’re lying in bed and you think “Oh, I’ll just do a quick boobie check.” I’d been doing self-exams for years but this time I felt something, and I froze in fear.
I kept touching and feeling the spot while my husband, Scott, looked on with concern. I told him immediately that something wasn’t right and made him feel the spot, too. We both knew that in that instant our lives were changing.
Knowing how your breasts feel is so important. Mine were always dense and lumpy. What I felt didn’t feel like a tumor. It was a hardness with no defined outer edges. I knew it was off because I had never felt that before. And, I knew it was something wrong because I had felt Amy’s. Her tumor was in the 12 o’clock position in her left breast… and so was mine.
Keep fighting, keep advocating
Getting my diagnosis confirmed was incredibly stressful because I had to strongly advocate for myself and ask for second opinions. The first radiologist and my gynecologist’s PA both told me it was a fibroid cyst. Had I listened to them, the cancer would have gone unchecked. Thankfully, I insisted on an appointment with my gynecologist who ordered further scans. I went to the same center and had an on-call radiologist who didn’t dismiss me. He confirmed what I felt with an ultrasound and said I needed a biopsy.
The results of that ultrasound-guided biopsy were not good. Sure enough, I had breast cancer. By now, it was almost ten years to the date of Amy’s death. I could hear her voice telling me to fight and keep advocating for myself.
The week of Thanksgiving, I had a lumpectomy and three sentinel nodes removed. My doctor ordered a Mammaprint test on the tumor to see what the rate of recurrence would be. I was told my tumor was Stage IIA, Hormone Positive with IDC and DCIS. All nodes and margins were clear, but the Mammaprint came back with a high chance of recurrence. My oncologist said I would need four rounds of T/C (Taxotere/Cytoxan) chemotherapy and then radiation.
Cold capping
A friend and fellow cancer-warrior told me that she saved her hair during chemo by a technique called “cold capping”. Here’s how it works. Scott put the caps in a cooler of dry ice the morning of chemo. Then we arrived at the center at least two hours before my infusion to set up. The caps had to be kept at minus 32 degrees Fahrenheit. I wore the cap for one hour before the infusion started and at least two hours afterwards. Scott had to put a new cap on me every thirty minutes. By the end of the day, I was exhausted, frozen, nauseated and had ice in my hair. I did, in fact, save my hair which really helped me emotionally to see “me” in the mirror.
Ready to quit before round three
I had a port inserted before my second chemo session and came armed with a heating blanket and peppermint oil. It all went okay, but I was ready to quit. When I went to my oncologist for my check up, I told him I was out. Finished. Done. I was not doing this anymore. He calmly redirected me and said that everything would look better a year from now and then made the appointment for the next chemo session.
After the fourth and final chemo session, I could barely keep anything down. I vacillated between constipation and diarrhea. After a few weeks of this, my oncologist ordered a colonoscopy and endoscopy. My dad had just passed away of colon cancer, and he wanted to make sure that nothing else was going on. Thankfully, everything was fine.
Time for radiation and more meds.
My chemo symptoms finally started to abate by the beginning of April, and then it was time to start radiation. I qualified for a shortened but more intense round of radiation – 4 ½ weeks versus 6 weeks. Radiation for me was a breeze compared to chemo. I did get a bad burn on my left breast and had some fatigue, but nothing that kept me from working.
The next step was to determine which long-term cancer medication I should take. My oncologist initially put me on Arimidex with a monthly shot of Zoladex to suppress my ovaries. Chemo had put me into menopause, but in order to be on Arimidex I had to be kept in a menopausal state.
I was not told that the monthly Zoladex shot was to go in my belly. Imagine my surprise when the nurse led me into a room and told me to lie down and pull up my shirt. This was not something I wanted to do on a monthly basis!
I was now on summer break from my teaching job, so I had more time to catch my breath and think about all of this long term. That’s when I realized that going to the cancer center every month was stressful for me, and I didn’t want to be beholden to getting medication every month. I had issues with my periods prior to chemo, so I met with a new gynecologist to discuss having a full hysterectomy. There’s a lot of cancer in my family, and I knew there was a connection between breast, colon and ovarian cancers. I opted for a hysterectomy in July 2016.
I was so happy when I finally healed from my hysterectomy, because it meant my journey was over. But my body had other plans for me.
Another lump
I was due for my six-month, post-chemo mammogram in September. So, like a good girl, I did a self-exam prior to my mammogram appointment. Wouldn’t you know it, I felt the same damn hardness as in Las Vegas, but now in my right breast. Through a flood of expletives, I heard Amy’s voice, “I wish I had done a double mastectomy.”
I had a surgical biopsy and thankfully it was “only” LCIS. – a type of breast change involving cancer-mimicking cells growing in the lining of the milk-producing glands of the breast. Fortunately, these cells do not invade through the walls of the glands, and are more easily treated. The LCIS was removed, and my surgeon said I was fine. My medical team followed me closely from here on out which meant more scans, more doctor visits, more
biopsies and on and on and on. I felt like my breasts were ticking time bombs.
My oncologist switched me from Arimidex to Aromasin and increased my treatment duration from five to ten years. He also supported the watch and wait approach. I took that time to get second medical opinions. Most plastic surgeons were not too keen on doing reconstruction because of my history with radiation. All conferred that I most definitely needed at least a year between my last radiation and any surgery. Radiation affects all of the tissues in the breast and can inhibit healing and cause capsular contracture with implants.
Another complicating factor was a genetic blood clotting disorder that I have which kept me from going on Tamoxifen. The doctors didn’t care to embark on a surgery with that hanging over their heads. None of the doctors would recommend a double mastectomy. They all said I could “watch and wait.” Still Amy kept whispering, “I wish I had gotten a double mastectomy.”
A new fantastic road
I continued to research using breastcancer.org for much of my information. There I learned about the Center for Restorative Breast Surgery in New Orleans. I initiated a conversation with them, joined a private Facebook group and continued to research their approaches. If you had told me a year prior that I would be considering an eight hour surgery, out of state with a surgeon I had only talked to on the phone, I would have said you were crazy. But here I was going down that road. And boy was it a fantastic road to travel!
This group of doctors are specialists in micro-surgeries using flaps for reconstruction. They only work with breast cancer patients and their hospital is attached to their offices. I scheduled my surgery for June of 2017. I was to have a bilateral mastectomy with SGAP reconstruction. SGAP uses the fat flaps from the top of the buttocks/hip region.
Breast reconstruction is not a boob job
Many people think breast reconstruction is like getting a boob job, but it is far from it. They don’t realize that a vital part of your body is essentially being amputated. Each woman goes through a wide range of emotions when making the decision to have reconstruction or remain flat. More life lessons learned from the minefield of breast cancer.
My surgery was almost nine hours long. I had four drains, compression garments, leg pumping calf cuffs to ward off blood clots, and who knows what else coming out of me. It was insane.
Moving forward without my parents
During this entire time, my mom was slowly deteriorating from her own lung cancer diagnosis. We bonded and took care of each other as best as we could as cancer patients often do. I took time off work to fly to Minnesota to see her, and talked with her daily about her needs and desires for her funeral. She passed away in October of 2017 with me by her side.
I now had to continue on alone to my last surgery without my parents – my original A team. I lost both of them to cancer within two years.
My final revision surgery took place just before Christmas in 2017. This entailed a butt lift to correct the indents from the flap removal, a boob lift, port/hysterectomy scar revisions, and liposuction to smooth everything out. It was “only” four hours long, and I still had four drains and compression garments afterwards. I now had a fabulous perky butt and “booty boobs”.
New Year, New Me! Amy would be proud.
Putting myself back together again
Closing out my mom’s estate and closing out the end of another school year became my tasks. During this time, I realized that I was physically and mentally spent. I had nothing left to give. And I needed to recover and breathe. So, I quit my job, and began physical therapy, grief counseling and brain training for “chemo brain”. I started to work on putting myself back together again. Honestly, I am still doing this as we speak since there is no time limit for “getting over” any of this.
My post-cancer phase has been harder, because I look “fine.” I am in remission, so I should be “fine”, right? I am told I am strong and brave, but no one sees the fatigue and emotional PTSD that trails along with me like a child’s droopy blanket. I usually hold back with my story because it is “too much” for many.
Mortality is a scary thing, and once you’ve been through the personal hell of cancer or sat with someone as they take their last breath, you realize that you’ve moved into a new stage in life. People will either move forward with you or they won’t… and that’s okay. Life lessons learned from the minefield of breast cancer.
Living as nomads around the globe
Cancer forces you to re-evaluate everything in your life. As a result, my husband and I sold most of our belongings a year ago to live as nomads. We have no house and no cars. We go where the wind takes us around the globe, and stay until we are ready to move on (before COVID-19 anyway). Interestingly, I’ve met other breast cancer warriors who travel similarly as a way of life.
Surviving is hard and takes a lot of time and patience. Pushing forward into a new way of living is both exhausting and exhilarating. It can be a challenge, so go easy on yourself when you think you should be doing something different – a different way of eating, exercising, looking or feeling. It can also feel defeating when we see others pass away from cancer. We often wonder, “Why them and not me?”
Life lessons learned
So, what are the life lessons learned from the minefield of breast cancer? Know that your journey is unique, and your way is okay. You are not alone. Breathe. Give yourself space and time to grieve. Ask your questions. Research your options. Advocate for yourself (it’s actually okay to fire your doctor). Lean into your tribe, and find other women walking a similar journey. And be sure to look for the magic everywhere – in a cup of coffee, getting out of bed, a smile, or a chance to share your story to help another.
Amy insisted I feel her tumor. In a sense, her selfless act saved me. In turn, I paid it forward the same way with my female friends and family. Relationships matter. Being authentic and vulnerable matters. Knowing you are not alone matters. For it is through our connections that we save each other.
About Holly
Since her initial diagnosis in 2015, Holly has beaten her cancer into remission, lost both of her parents, left her teaching career, and sold most of her earthly possessions to travel the world with her husband. While living a minimalist “nomadic life” abroad, she has welcomed a granddaughter, learned to surf and gotten very close to her goal of visiting fifty countries before turning fifty years old. (She made it to forty-five different countries before COVID-19 impacted international travel. And just before turning fifty in June.) Holly continues to navigate healthcare systems on other continents to address her ongoing cancer remission – and one broken ankle from surfing.
Want to hear more? Holly has told her inspiring story on Breast Cancer Conversations, a podcast produced by Survivingbreastcancer.org. Look for Holly specifically in three episodes. #75 – What Life Can Be Like After Breast Cancer – Traveling The World With Holly (September 13, 2020). #76 – Losing Your Hair During Chemo vs Cold Capping – An Interview With Holly Wintrip (September 13, 2020). And #77 – Superior Gluteal Artery Perforator Flap Breast Cancer Reconstruction (September 27, 2020).
Next weekend our month-long series continues with another guest author and friend of the thankful bee. Subscribe directly on the blog (thethankfulbee.com) to receive an email alert when our second Queen Bee lands. Join us October 10th to hear about Kristen’s struggles within the fashion blogging industry and her own self-image. It’s going to be fabulous!
