By Holly Wintrip
My breast cancer journey started long before my diagnosis at age 45. During my thirties, my friend Amy was diagnosed with breast cancer in her left breast. Amy and I became friends through our kids when they were in preschool. She was a kickass woman from Texas who ferociously loved her boys, family and friends. She was never afraid to speak her mind and was always helping other people. When she 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.
In September of 2015 while on a trip to Vegas to the “Life is Beautiful” music festival, I decided to do a 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. 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. Amy’s tumor was in the 12 o’clock position in her left breast….and so was mine.
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 said I needed a biopsy. I told him I wanted him to do it, not the other guy. He made room for me in his schedule for an ultrasound guided biopsy. Sure enough, it was 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.
One of the best things I can recommend is building a group of people to help you through this. These people be it friends, family, and medical professionals help ease the burden on your main caregivers, mine being my husband followed by my daughter, Mackenzie. My friend, Sharon, was the first medical person to join my team. As the search for doctors started, she called me and said “You need to see Dr. Blumencranz. He’s the best.” She would know as she had been his nurse anesthetist for years. When I heard his name was Peter William (my dad’s name) and met him, I was sold. Sharon helped me navigate the surgeries and was always on hand with good drugs to put me out! She brought a sense of humor and lightness to each surgery, and I couldn’t have done this without her.
Throughout all of this, I continued to teach middle school and only my principal knew what was happening. One day my fellow homeroom teacher, Liz, asked me if I was ok and wondered what was going on. She was new to the school, and I was hesitant to share my diagnosis with an acquaintance. I got over myself and told her my story. Thank goodness I did because she had just finished treatment 6 months before using the same surgeon and oncologist that I had been sent to! She became a vital part of my team as my medical journey ramped up.
The week of Thanksgiving, I had a lumpectomy and 3 sentinel nodes removed. My doctor ordered a Mammaprint test on the tumor to see what the rate of recurrence would be. I was told I 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) and then radiation.
Liz told me that she saved her hair during chemo by cold capping. So, Scott ordered the cold caps and took charge of managing them because my chemo center did not have the Dignicap system. It was quite an ordeal to cold cap on my own. Scott was in charge of putting caps in a cooler of dry ice the morning of chemo. We had to arrive at the center at least 2 hours before my infusion to set up. The caps had to be kept at -32 degrees. I had to start wearing the cap 1 hour before the infusion started and at least 2 hours afterwards. He had to put a new cap on me every 30 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.
To be able to navigate treatments while working, I started chemo on December 31st. This way I wouldn’t have to take much time off due to the holiday break. The cold capping combined with the timing of chemo on a holiday meant we had to leave the cancer center when it closed at noon instead of staying there until the end of cold capping. I was just plain miserable from it all. Mackenzie and Scott had to support me through intense nausea and a breakdown upon my return from the cancer center.
I also thought I could do chemo in my veins and not get a port, which was a poor decision on my part. My arm bruised and my good vein blew out. I did ok with the Neulasta on-body injector, but I did have bone pain afterwards. Claritin helped with this. As for neuropathy, my onco told me to take Alpha Lipoic Acid and ice my fingers. It worked and any mild neuropathy that I did have went away.
I had a port inserted before my second chemo session and came armed with a heating blanket and peppermint oil. It all went ok, but I was still ready to quit. I went to my oncologist for my check up to tell him I was out. I’m done. 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 third session (jerk :).
At the third session, he gave me an infusion of iron to boost my red blood cell count. This went well because of the steroids given with chemo, but I needed a second infusion a week later. This resulted in an allergic reaction with hives and my throat swelling. I had to go back for another infusion of different meds to settle things down. At the end, I was still having some symptoms and my onco sent me for a CT scan to make sure I didn’t have a pulmonary embolism. It was a long two days and my tummy was a wreck from then on.
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 onco had me get a colonoscopy and endoscopy. Mainly because 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.
Throughout all of these treatments, I continued to teach. My school was incredibly supportive. I would take the week of chemo off and return to work for the two weeks before the next infusion. The students, teachers, and parents all rallied behind me. I’m not sure they learned much world history, but they did learn from me how to be resilient when facing a difficult time.
My chemo symptoms finally started to abate by the beginning of April and now 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 onco 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 and had some time to catch my breath and think about all of this long term. 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 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 of 2016. As I was in preop waiting for surgery with no hearing aids or glasses, I was surprised by a voice saying “Mrs. Wintrip?” It was the father of 2 active kids that I had taught and also the head of anesthesiology! He offered to recuse himself, to which I replied “No way! You owe me.” He took such good care of me, made sure to check on me in recovery, and gave me his cell number in case I had questions once I went home. I was so happy when I was finally healed from this because it meant my journey was done!! Woo Hoo!
But my body had other plans for me. I was due for my 6 month, post chemo mammogram in September. So, like a good girl I did my self-exam prior to my mammogram appointment. Wouldn’t you know it, I felt the same damn hardness but now it was in the right breast. I said a lot of expletives after that and then I heard Amy’s voice, “I wish I had done a double mastectomy.”
I had a surgical biopsy and thankfully it was “only” LCIS. It was removed and my surgeon said I was fine. He and my onco would follow me closely from here on out which means more scans, more doctor visits, more biopsies and on and on and on. I told Scott that I felt like my breasts were ticking time bombs. (He didn’t really care for the visual of boobies blowing up.)
My oncologist switched me from Arimidex to Aromasin and increased it from 5 years to 10. He also advocated the watch and wait approach.
I took the time to get second opinions from MD Anderson and plastic surgeons. Most plastic surgeons were not too keen on doing recon because I had had 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.”
I continued to research using breastcancer.org for much of my information. It was 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 8 hour surgery, out of state, and 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 recon. 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. Many people think 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 in effect, being amputated. Each woman goes through a wide range of emotional processing to make the decision to have recon or remain flat.
My surgery was 8-9 hours long. I had four drains, compression garments, leg pumping thingies to ward off blood clots, and who knows what else coming out of me. It was insane. The hospital nurses, Stacey and Brittany, became my go to women. I cannot say enough about this hospital. I felt like I was loved and taken care of like my mom would do it. They even had a chef on staff who would make me something that wasn’t on the menu! The recovery time was long and arduous, and still Mackenzie, Scott, and my friends and family remained by my side.
My insurance covered a lot of the surgery and the Center worked with me every step of the way so I understood what my financial output would be. It also helped that I had bought a cancer policy with AFLAC when I was 28. This turned out to be a Godsend during the entire process. I knew a second revision surgery was in my future, but the end was finally near. Not a year later like my onco had said, but still. There was a light at the end of the tunnel.
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 do. I’d take time off work to fly to Minnesota to see her, and would talk 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 after having lost my parents, my A team, both to cancer in 2 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 lipo 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 “butt boobs.” New Year, New Me! Amy would be proud!
One thing no one tells you about chemo is the effect it has on your vagina. Dries it right up like an old lady. “Sorry folks! Park’s closed!” It was very uncomfortable. I jokingly told my gynecologist (my third in 3 years) that I now had 20 year old boobs and a 70 year old’s vagina. She recommended laser treatment called Mona Lisa Touch since I couldn’t use any hormones. I did four sessions of this over the course of 6 months, and I was returned to almost normal.
I was now tasked with closing out my mom’s estate while nearing the end of the school year, I realized that I was physically and mentally done. I had nothing left to give and needed to recover and breathe. I quit my job, began physical therapy, grief counseling, and brain training for chemo brain. I started to work on putting Humpty Dumpty back together again. I am still doing this as we speak since there is no time limit for “getting over” any of this.
The post cancer phase has been harder because I look “fine.” I am in remission, so I should be “fine.” 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 blankie. I hold back with my story because it is “too much” for many.
Mortality is a scary thing, and once you’ve been through personal hell of cancer and sat with someone as they take their last breath, you realize that you’ve now moved into a new stage in life. People will either move forward with you or they won’t...and that’s ok. After all my treatments, I made sure to contact Amy’s sons to share my story and remind them of how she is living on in all of us.
Cancer forces you to reevaluate everything. My husband and I sold most of our belongings a year ago to live as nomads. I’ve met other breast cancer warriors who travel as a way of life. We’ve shared stories and tips for navigating living abroad. Joining expat groups to get medical facility recommendations. I’ve learned is that medical care is usually just as good outside of the States, and it’s often cheaper with faster results.
Surviving is hard and takes a lot of time and patience. It can be exhausting and exhilarating at the same time because you can push forward into a new way of living. It can be a challenge so go easy on yourself when you think you should be doing something different be it a different way of eating, exercising, looking or feeling. It can feel defeating when we see others pass away from cancer. We often wonder, “Why them and not me?” Know that your journey is unique, and your way is ok. You are not alone. And just like Amy, I made sure all of my friends felt my tumor before it was removed. It is in reaching out that we save each other
Recommendations for navigating the minefield of cancer:
1. Second opinion and third opinions. You are hiring your doctors.
2. Research... Knowledge really is power
3. Grieve
4. Find your tribe and forgive those who fall away
5. Get someone to fight for you when you can’t
6. Take someone to all appointments for another set of ears. Info is overwhelming.
7. Write down your questions and concerns. There are no stupid questions.
8. Schedule surgeries and treatments in the same calendar year to max out your deductible
9. Watch out for your bone, dental, vaginal, and thyroid health. Chemo and meds take a toll on these areas.
10. AFLAC was a Godsend for me financially.
11. Breastcancer.org and their discussion groups were helpful to me.
12. Dr. Google and communities on Instagram and Facebook can be both helpful and cause anxiety. Tread carefully.
13. Drink LOTS of water before and after chemo. Ask if you can get an IV infusion of fluids a few days after chemo. It helps tremendously. One of my nurses recommended this.
14. Find other women in treatment to talk to.
15. You can save your hair if you want to with cold capping.
16. Watch out for shaming. Be aware of this as it’s insidious.
“If I’d only eaten better.”
“My stress caused my cancer.”
“I didn’t work out enough.”
YOU did not cause your cancer. It just is. Take on one small thing at a time. You do not have to change your lifestyle all at once or at all.
17. Do what you need to do to heal and process.
18. It’s ok to say NO. (I found meal delivery to be stressful, so I asked for gift cards.)
19. Breathe
20. Look for the magic be it in a cup of coffee, getting out of bed, a smile, or a chance to share your story to help another.
Share your story and be the inspiration and light in someone else's journey.