Tag: breast cancer

creativity

The 4.5-Mile Walk: What Cancer Taught Me About Resilience and Love

Christa Avampato
Me at Macy’s in NYC 5 years ago, right after my second surgery

Five years ago, I was marching from the subway to NYU hospital for yet another surgery—two weeks after a bilateral mastectomy—with the high-stakes knowledge that if cancer cells were hiding in my body, my surgeon was going in to find them. This photo memory, which Google popped up yesterday, was taken right after I left the hospital and showcases the hope I felt that day.

I had this second surgery because the lymph nodes that biopsied negative for cancer came back positive in the pathology. Out of an abundance of caution, my surgeon said she wanted to remove all the lymph nodes under my left arm to see if any of those axillary nodes were positive. (She removed all the lymph nodes under my right arm during my mastectomy, and they were all negative, thankfully.) If any nodes under my left arm were positive, that would mean the cancer could have spread. This also meant that I would be at risk of lymphedema (swelling) not only in my right arm but now in my left arm as well. 

My surgeon was devastated that this happened to me. She said, “I hate that every time you come into my office it’s a horror show. I keep pulling the rug out from under you. But I promise you this – if there’s cancer in you, I’m going in there to get it.”

While I was disappointed to have another surgery so soon and with such high stakes in the outcome, I wasn’t nervous. My surgeon’s confidence in her abilities gave me confidence in mine. I marched from the subway to NYU hospital that morning, ready for battle. I felt powerful and strong, like a warrior. I remember thinking, “Cancer, if you’re hiding in me, we’re coming for you. You can’t hide from us.”

I woke up quickly in the recovery room after surgery, completely alert and sobbing. Crying is a common reaction from anesthesia. The nurse was concerned I was crying with worry. I explained I was crying with relief and gratitude. A wave of peace washed over me: whatever the final pathology report said, we had done everything we could.

My sister came to pick me up, and she said, “What do you want to do?” I said, “I want to go for a walk.” 

We walked to Macy’s to see the Christmas decorations – that’s where she took this picture of me. Then we walked home to get my dog at doggy daycare and back home to my Upper West Side apartment. It was a total of 4 1/2 miles. Those twinkling lights, the love from my sister, and that long walk made me believe that against all odds, I’d be okay. 

We waited for a week for the results. I should have been panicked waiting for the results of the surgery. Again, I wasn’t nervous. We’d done everything we could. The results would be the results. 

While we waited, my sister and I watched every episode of The Great British Baking Show. I took naps. We walked my dog. Friends called, brought food, and sent care packages. I knew my sister was scared. She was making plans to stay with me longer, preparing for the worst.

My surgeon’s nurse practitioner called me a week later. There was a delay in the results because the lab was backed up. She was so upset I was waiting this long, and I told her, “Don’t worry. I’m not worried.”

She called me back 10 minutes later. I could hear her crying. The results were in. All the lymph nodes were negative. No sign of cancer. 

I did have some evidence of cancer cells in my breast tissue trying to escape to the rest of my body (this is called “vascular invasion”). With the mastectomy, we’d stopped them in their tracks. Still, with vascular invasion, chemo was recommended for me by a panel of oncologists that my team had consulted, not only at NYU, but at top cancer institutes across the country. So, chemo would start in a month, just before Christmas. 

Though I didn’t know at the time that the coming chemo treatments would nearly kill me twice, in that moment, standing at the precipice of a new fight, I was simply and profoundly grateful for my surgeon, the dream that drove me to get tested in the first place, my sister and friends, my dog, and every breath I took.

Last week on another long walk, I went by Macy’s on my way to meet friends for dinner. How far I’ve come since that long walk five years ago. Their theme this year of “Give Love” is spread across the outside of the building in bright lights. I smiled at those words because 5 years ago cancer showed me that giving love is the secret of life. To love and be loved in return, in all the ways love shows up in this world and in our lives, is a gift beyond measure. It’s a gift I give and receive in greater amounts every day, everywhere I go. It’s the gift that keeps on giving.

creativity

Living in gratitude on my 5-year cancer journey

Christa Avampato
Me outside the Perlmutter Cancer Center in NYC on October 29th after seeing my surgeon on the 5-year anniversary of my discharge from surgery

Last week I celebrated 5 years since the bilateral mastectomy that saved my life and removed any sign of cancer from my body. My friend, Wayne, describes journeys like this as a log flume. When we begin, we’re at the top of a terrifying drop. We’re scared, nervous, unsure, hopeful, confused, anxious. All the emotions of the human condition are raw and tumbled in our minds and hearts. We’re trying to keep our head up and our eyes ahead. we don’t want to take that plunge into the unknown. But we have to. We can’t turn around. The only way out is through.

And so, we take a deep breath, and we let ourselves fall. We face all the things we were afraid of, and then some. In every health challenge journey, circumstances arise that we never expected. In my case, I had to have another surgery 3 weeks later because lymph nodes that biopsied negative came back positive in the pathology. All the nodes from that second surgery were, thankfully, negative. Then I nearly died, twice, from a life-threatening allergy to Taxol, a common chemo drug, that shut down my lungs in the middle of COVID. My oncologist at the time thought I was being overly dramatic about my side effects when in fact I was suffocating. (I fired her from my care team, and she no longer sees patients.) My pulmonology team thought my lungs might be permanently scarred and I may need to have an oxygen tank for the rest of my life. Thanks to science and diligence, I fully recovered and now I’m healthier and stronger than ever.

I spent the evening of my 5-year surgery anniversary producing and hosting NYC’s Secrets & Lies – Ghost Stories. The irony isn’t lost on me—that I nearly became a ghost myself with so much life I still wanted to live and that storytelling and creativity have been two of my greatest teachers and healers.

In the wee hours of the morning after my surgery, I woke up in recovery. High as a kite on a massive amount of drugs, my nurse ran around the hospital to find me a turkey sandwich and to this day it’s the best thing I’ve ever eaten. I happily gobbled it down, watched a Harry Potter film on my tablet, and cried enormous tears of gratitude. There was less of my body in the world, but I was still alive, still breathing, and cancer-free. My greatest wish that morning was to see the sunrise so my nurse got me out of bed and wheeled me to one of the lounge spaces in the recovery wing so I could see the sun come up over the East River and the FDR Drive. I will never forget that view.

My surgery team members came to see me before I was discharged. My plastic surgeon who had placed the first installment of my reconstruction – the tissue expanders that would go on to cause 14 months of constant pain – told me that I woke up from anesthesia very quickly, before I’d even left the operating room. I began gushing how grateful and thankful I was to the whole surgery team. She said the entire team was laughing and crying right along with me. I have zero memory of this, and I wish I’d been fully conscious to remember it. Leave it to me to bring the funny in the darkest of times!

Then my breast surgeon came to check me before discharge. Through our masks, I thanked her for saving me and she said, “Sweetie, I’m just part of the team. And every person in this hospital shows up every day with the only goal being to help you heal. And you will heal. And how you feel now – the pain and the fear – it won’t always feel this way. We’re going to get through this together.” My dear friend, Marita, picked me up from the hospital and drove me home to where my sister and my dog were waiting for me. In the following months, so many beautiful friends sent me care packages, messages, cards, and food, and came to visit me from a distance – outside and masked. The trying times we made it through! I’m so thankful for everyone who cheered me on and helped me in a million different ways. I wouldn’t be here without you.

It’s fitting that exactly 5 years at that exact time she came to see me in recovery that I had my 5-year check-up with my breast surgeon. She gave me a clean bill of health, and we talked about the next 5 years of meds. She eased my mind and soothed my heart, as she always does, with science and compassion. We have a plan to keep me cancer-free, and I feel ready to start this next chapter.

I left her office with tears in my eyes and my head, heart, and spirit filled with gratitude for every second of these past 5 years. I’m even grateful for the worst days on this journey because I got to live them. Every morning, my first thought is, “Whew, I got another one!” Long may that tradition continue.

Below are photos of me on the day of my surgery and the morning after when I woke up and saw the sunrise

creativity

Using science to build strong bones as a cancer survivor

Christa Avampato
Me at Ravinia when I visited friends in Chicago this weekend

Some personal health news and a story about the power of science. 2 years ago, I went for a bone density test. Unsurprisingly it showed that my current “f*ck cancer” meds had decreased my bone density numbers into the osteopenia range with 1 number from my low back on the border for osteoporosis.

At that point, my oncology team and I decided to play defense. I added the equivalent of Harry Potter’s Skele-gro to my arsenal of daily weight-bearing exercises, a very healthy diet, and no alcohol that I was already doing. The hope was the new med would stabilize my numbers and keep osteoporosis at bay.

I just had my 2 year bone density test. Some of my numbers have improved by a lot. A couple stayed the same. The number for my low back tipped by -.1, taking me into osteoporosis.

I bursted into tears. I spend an incredible amount of time and effort looking after my health. Ani DiFranco wasn’t joking when she sang, “self-preservation is a full-time occupation.” How was this fair? What else was I supposed to do to stop this?

I pulled myself together and messaged my oncologist to ask about next steps.

I took myself for a walk and gave myself a pep talk. The med is working. Healing isn’t linear. I know this. Like an arrow, sometimes we have to be pulled back a bit to fly forward.

By the time I got home, my oncologist had responded. I expected to see a recommendation for more meds. “This is status quo. You’re on protective meds and will be done with the meds causing this side effect in a year. This will get better.”

The new medications I’ll switch to in a year, which will mark 5 years since the end of my active cancer treatment, don’t diminish bone density. They will likely protect my bone health and possibly improve my numbers. And my oncologist will keep me on the Skele-gro until I’m out of osteoporosis land.

My bone health isn’t where I want it to be. Not yet. I’ll get there, one day at a time, thanks to science.

creativity

New research to relieve radiation fibrosis for cancer patients

Christa Avampato
Photo by Oksana Taran on Unsplash

Some nerdy science news! Ever since my early breast cancer diagnosis in 2020, I’ve participated in a number of scientific studies and new medical treatments. Last week I began a new one after one of my doctors suggested it as a way to help support my body’s ongoing healing.

I had my bilateral mastectomy in October 2020. When the pathology was done, the research team found that lymph nodes in my left breast were positive for cancer cells even though they had biopsied negative. Additionally, I had something called “vascular invasion” on my left side. This means a few pesky breast cancer cells were trying to make their way out of my breast tissue by traveling through my blood vessels and lymphatic system. I was fortunate that my surgery removed them and brought their journey to an end before they could do any more damage. We also did a second surgery under my left arm 2 weeks after my mastectomy to test those lymph nodes. Thankfully, all of the lymph nodes under my left arm were cancer-free (just like the ones under my right arm!) However, there was a very slight possibility that one or two of those cancer cells on the left side got away without us knowing. On the off chance that this happened, my radiation oncology team suggested radiation just on the left side to ensure we stopped them. (There was no vascular invasion on my right side, so radiation on the right side wasn’t needed.) Also, there was one lymph node very close to my lung and heart on the left side that was a tiny bit enlarged. Because of its location near my heart and lung, it was too risky to biopsy or remove it. So, radiation would be used to kill any cancer cells that might be trying to hang out in that lymph node.

In total, I had 6 weeks of radiation, 5 days each week, for a total of 30 radiation sessions. The last 5 sessions were a “boost” week meaning the radiation was stepped up to a higher level and aimed right at that lymph node near my heart and lung. Though I’m grateful for these lifesaving treatments, the side effects were a bit rough. I got a 3rd degree burn the size of a baseball in the center of my chest and it caused the muscles, ligaments, and tendons on the left side to tighten up considerably. Though I’ve regained almost all of my mobility in my upper body through a lot of hard work, those muscles, ligaments, and tendons on my left side are still very tight and my left shoulder rolls in very slightly as a result. This condition is called radiation fibrosis.

All of my medical cancer care is through NYU Langone Health in New York City. They recently hired Dr. Yingrong Zhu, a physiatrist who specializes in breast cancer survivorship. A physiatrist, also known as a physical medicine and rehabilitation (PM&R) physician, is a medical doctor specializing in diagnosing and treating conditions affecting the musculoskeletal system, nervous system, and other bodily functions, with the goal of restoring function and improving quality of life.

I went to see Dr. Zhu this week and had a fantastic experience. She explained that the effects of radiation can persist for 20 years – I had no idea! – so this issues I’m having with tightness deserve attention. She also explained that because I work out and stretch every day (including stretches given to me by my physical therapy team right after my active treatment), more physical therapy wasn’t likely to help me. However, she told me about some small scientific studies that show a 6-month course of vitamin E 1000 i.u. supplements combined with a medication called pentoxifylline ER can help release tension in muscles affected by radiation fibrosis and lead to increased mobility.

Together, Dr. Zhu and I decided it was worth me trying this new medication combo. The side effects are minimal, and she’s had a few other patients who have benefitted from it. It’s too soon to tell if it will help me, but I’m always willing to try anything that helps support my health and well-being. I also see this as an opportunity to not only help myself, but also to help others by sharing my experience with this new treatment. I’m excited about the possibility of regaining more of my mobility and improving my quality of life. Here’s hoping that someday I’ll be able to do my beloved yoga backbends again!

creativity

What I’ve learned in the 4 years since my bilateral mastectomy after breast cancer

Christa Avampato
Me today — 4 years post-surgery — outside of Perlmutter Cancer Center in New York City

Sunday marked 4 years since the bilateral mastectomy that removed cancer from my body and saved my life. I dropped off my absentee ballot for the election on October 26th, 2020 during early voting and in the depths of the pandemic before vaccines. The next day I went to NYU Langone Medical Center. The surgery was long and difficult. The recovery was painful. The many months of treatment and two additional surgeries, life-threatening setbacks, and healing were even worse. I didn’t know about any of that when I arrived at the hospital that day. All I knew then was I wanted to live, and I might not. My only goal was to wake up from that surgery and see the sunrise. And I did. Step 1, done.

After I woke up from anesthesia, I watched Harry Potter on my iPad, trying to invoke some kind of magic of my own. My angel nurse, Esther, ran all over the hospital to find me a sandwich since meal service had ended. To this day, that ordinary turkey sandwich was the best damn thing I’ve ever eaten. Then she showed me how to care for the 4 drains coming out of my body, a necessary evil after an extensive surgery.

When Dr. Schnabel, my surgeon, came to visit me, I thanked her for saving my life. Neither of us could see each other’s smiles because we were both double-masked. I remember her eyes looking deep into mine. “I’m just part of the team. Everyone in this hospital has one goal — to get you up and over the mountain. It won’t always feel like this. Someday you’re going to be very grateful you chose to take the hard road today.”

My friend, Marita, picked me up at the hospital and gave me the gentlest of hugs. I had a giant bag of meds. “How do you feel?” she asked me once I was settled into her car. I said, “I don’t know.”

Marita drove me home and handed me off to my sister, who dropped her whole life in Florida to take care of me (and my dog). My next goal was to be able to walk around my neighborhood by Halloween with my dog dressed as a pumpkin and my sister to see all the decorations and find some joy in my favorite season. Step 2, done.

My next goals — stay alive, restore my health, and thrive. Steps 3, 4, and 5, done, done, and a daily process.

I went for my annual check-up with my surgeon this morning. All clear! It happened to fall on the anniversary of that conversation we had about the choice to take the hard road. As I walked to the subway to head home in the sunshine, I thought about how right she was — she’s always right. I don’t feel the way I felt 4 years ago. Today, I’m hopeful and thankful for all of it, even cancer. We got up and over that mountain. There are so many people who made this trek possible. I was never alone in it. There were angels, guides, and teachers everywhere. There still are. The journey continues, and I’m very grateful for that.

Below: images from four years ago pre- and post-surgery.

creativity

Getting through breast cancer awareness month as a survivor

Christa Avampato
Photo by Angiola Harry on Unsplash

Today is the 4-year anniversary of my breast cancer diagnosis. Everything is pink as far as the eye can see. It’s breast cancer awareness month, and the awareness is everywhere. If it exists in solid form, it can be made pink. This month helps raise awareness around the importance of screening, early detection, research, causes, and symptom identification. 

As a breast cancer survivor, all this awareness can be triggering. It can bring back difficult memories, re-ignite fears, and cause those dreaded what-if questions that are often just a breath away. As a survivor myself, I use every day to advocate for cancer survivors and those who know a survivor. Here is a list of how survivors can care for themselves during this sensitive month, and how you can provide support for the survivors in your life.

For survivors:
1.) It’s okay to acknowledge fears. Acknowledging them is the first step toward moving through them. It’s also important to remind yourself that these are future fears. they have not happened. They are not your present. 

2.) Be kind to yourself. Spend time with others. Go for a walk. Eat nutritious food. Do something you love. Find joy. In moments of difficulty, don’t judge yourself. Give yourself grace. 

3.) When those what-ifs creep in, remind yourself how far you’ve come and all you’ve overcome. Getting through cancer and treatment is a long, often-lonely journey. When you look back at your road, be proud of all you’ve faced and how you’ve grown.

4.) Remind yourself of the gifts. Cancer is terrible. There’s no way around that. It also gives incredible gifts. I grew closer to people during and after cancer. I have even more gratitude. My heart holds even more love. I don’t have bad days anymore. Every day is a good day because I get to have it. It wasn’t so long ago that I almost didn’t get a tomorrow. At several points in my journey, I was on the brink of dying. That I’m here at all is a miracle my doctors still don’t fully understand. As my surgeon says, “We don’t question the good.” Just live. Really live. 

5.) Share your story. There are people who are where you were. Be a symbol of who they can be on the other side of cancer. This helps you and them. 

For those who know a survivor:
1.) Check in on them. Ask them how they’re doing. Be a safe person for them to open up to. Being there for them is an incredible gift. 

2.) Donate to breast cancer organizations in the name of the survivor. No amount is too small and it means a lot to survivors that other people are being helped in their name. Research saved my life and I’m part of multiple research studies that are helping others. It’s empowering. 

3.) Do something special for them. Have a coffee date or a meal with them, plan a fun day out, give them a call, or send a card or text to tell them you’re thinking of them. All these small gestures really make a difference. Time is our most precious resource so if you want someone to know they matter to you, give them some of your time. 

creativity

Celebrating National Cancer Survivors Month

Christa Avampato
Superpower by Brian Andreas

This year I learned June is National Cancer Survivors Month. I ended active treatment (for me, that was the end of primary surgeries, intravenous chemotherapy, and radiation) at the end of May 2021 so it perfectly coincides with my official cancer-free anniversary. 3 years on and I’m feeling terrific!

Being a survivor is daily work. Diet, exercise, medication, meditation, mindfulness, sleep, and stress-reduction are incredibly important parts of my routine helping me stay cancer-free. It can sometimes be a lonely road. Unless someone has walked this path themselves, it’s difficult to understand how it feels. My body does not look nor feel the way my pre-cancer body did. It never will. I’ve had to make peace with a new normal, scars and all. I miss my pre-cancer body and I’m grateful for the one I have. We can simultaneously carry mourning and gratitude. I carry them every day.

What I never lose sight of, not for a single moment, is that I’m extraordinarily lucky to be here at all. Even luckier still to be living a life I love and to be healthy. 2024 thus far has been challenging for me — personally, academically, and professionally. The world is a difficult place. My corner of the world is difficult, too, albeit for very different reasons. And still, I’m finding and cultivating beauty, wonder, joy, and love every day, in my work and in my life.

It’s a beautiful coincidence that this morning Brian Andreas, one of my favorite artists, posted this image that he created called Superpower. I’ll be buying this one to hang in my bedroom. It’s me. My superpower is waking up every day constantly amazed at being alive. Long may it continue.

creativity

The benefits of Zometa for early-stage breast cancer survivors

Christa Avampato
Me getting my recent Zometa infusion at Perlmutter Cancer Center

This is me at Perlmutter Cancer Center this week getting an infusion of Zometa, my own version of the Harry Potter Skele-Gro potion. The medications I take to prevent cancer recurrence have the unfortunate side-effect of decreasing my bone density. Zometa has the dual benefit of regrowing bone and reducing the risk of breast cancer recurrence. Isn’t that cool? The hope is I’ll only need 4 infusions (once every 6 months) so I’m halfway there! I also got all my annual bloodwork done and it’s perfect.

I get this infusion once every 6 months in the same chemo ward I went to during those dark days of active treatment in the midst of the pandemic before vaccines. I remember how sick and scared I was, how my dreams were on hold, and maybe out of reach. I’d flip through pictures of University of Cambridge and University of Oxford having put my graduate school applications to study environmental sustainability on hold, hoping I’d live to pursue those dreams.

Now I’m 3 months from finishing my degree at Cambridge Institute for Sustainability Leadership. The dream came true. It was a dream delayed but not a dream denied, thanks to the incredible care I received and the many people who made it possible for me to heal. Science and medicine are incredible. Better living through chemistry.

Managing through ongoing care can be exhausting. I’m also extraordinarily lucky to have access to the best medical care in the world. There are so many who don’t. And if this is what it takes to maintain my health and live the life I imagine, that’s fine with me. There is so much I’m learning on the journey, and I’m grateful to be able to use it to help others.

creativity

How I came to see cancer as a gift

Christa Avampato
Filmed by Jen Aks for The Power of Gesture

As breast cancer awareness month comes to a close, I wanted to share this clip of me that was filmed by Jen Aks from The Power of Gesture just as I completed active treatment in 2021. (You can see the full interview at https://www.youtube.com/playlist?list=PLF8SWzj5Blq1S8KGan6FXCl8tvxTPUVZm). My hair had started to grow back after chemo and I was on heavy doses of steroids to repair my body from a near-lethal case of pulmonary pneumonitis (lung inflammation) caused by chemo.

Healing and hopeful, I turned my attention to my mental health, something we don’t talk enough about as it relates to physical illness. I made the conscious choice to see cancer as a gift, something that honed me as it harmed me. Though I don’t want anyone to ever go through cancer, I wouldn’t erase it from my own history if I could. It made me stronger, wiser, braver, kinder, and more compassionate. It taught me to ask for help and advocate for myself and all others who walk this road.

Because of what I went through, patients at my cancer center now have better care. My personal health data from this battle has been presented at medical conferences and written about in medical journals to better train doctors and researchers. I continue to contribute to research for better treatments and cures.

From food drops at my front door to gifts of comfort to messages of encouragement in every communication channel I have, my community had my back every step of the way. Though physically alone for much of my journey, they made sure I was never spiritually alone. They brought me joy and hope, and many times that was all I had to hang onto. There is no healing without grieving, and so I gave myself the space to grieve and mourn everything I lost. That process allowed me to recognize that while I can never get back my pre-cancer life and body, I can have something better—the life I have now. If we can let go of a dream that’s died, we can create something new and better.

Healing isn’t linear nor easy, but now on this side of history I can say that it’s absolutely worth every ounce of effort. So no matter what you’re going through now, keep going. There’s something beautiful waiting for you.

creativity

3 years cancer-free today

Christa Avampato
Me happily cancer-free for 3 years

3 years ago today I had the surgery that eradicated cancer from my body – a bilateral mastectomy with reconstruction. I had my annual checkup with my brilliant surgeon, Dr. Freya Schnabel at Perlmutter Cancer Center – part of NYU Langone Health, today and I’m happily NED – no evidence of disease. Forever grateful and enjoying my life and health to the max! Thank you to everyone who’s been in the trenches with me and helped me up and over this mountain. So happy to pay it forward and help others on their journey.