Tag: cancer

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

How I support cancer patients and caregivers at Hope Lodge in NYC

Christa Avampato
Hope Lodge NYC. Photo by Christa Avampato.

On Monday night, I held my first conversation group at the American Cancer Society’s Hope Lodge in New York City. Cancer patients and their caregivers stay there for free while the patients receive treatment in New York. My twice-a-month conversation groups are a safe space where any of the patients and caregivers can come to talk about anything that’s on their minds. I bring homemade baked goods, coloring supplies, and a willingness to listen. On Monday, a lovely group of volunteers from the skincare company La Roche-Posay also provided dinner for everyone so our 1-hour group turned into a 3-hour group.

As a cancer survivor, I’ve been searching for a way to give back and help other people on their healing journey. I love talking with people, hearing their stories, and helping them work through challenges (if help is what they need). I was very lucky to survive cancer and regain my health. This is my way of supporting others as they rise.

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

What a new health scare taught me about living

Christa Avampato
Photo of me in Prospect Park, Brooklyn.

This week, I had a short-lived health scare. A recent test came back with abnormal results. I was asymptomatic, as I was when diagnosed with cancer 4 years ago, so this threw me for a loop. It turned out to be a new side effect from my long-term meds that prevent cancer recurrence.

My doctor prescribed medication for a month to clear the inflammation and dietary changes to manage it since I have to stay on the meds causing this. It’s annoying. It’s also a relief that it was caught early and is reversible. I learned a lot with this recent scare. I’m leaning into these insights:

Slow down
I’m terrible at sitting still. Between the election in less than 2 weeks, climate change, and a myriad of other challenges in the world, there is a push to go go go. Do more, and faster. While this is true, it is also true that we have to rest. Take a walk. Eat well. Care for ourselves and others. Health is the greatest wealth. We are no good to anyone if we aren’t also good to ourselves. It’s not either or. It’s and.

Mortality
No matter how well we take care of ourselves, none of us will live forever. Time is our most precious resource, and we would do well to spend it on who, what, and where matters most to us.

Write
Around this time of year, I set my near-term priorities and creative focus. While writing is always a big part of my life, in 2025, it’ll be the central work I’ll do because storytelling is the work I love most & the greatest need I see in the world. I have quite a few writing projects in various states. It’s time to get them all polished up and out into the world. More on this soon.

Betting on me
Betting on myself is the best bet. I’ve never regretted it, even when things went horribly wrong. This is how I’ve learned and grown the most in my career and life. This is another reason I’m focusing on my writing in 2025.

Community
Caring for ourselves and betting ourselves is not work we do alone. It takes a village. My community and my medical team is central to my health, well-being, and creative work. I’m never alone in it. Neither are you.

Thank you for being on this journey of discovery with me. Let’s enjoy the ride. We’re all just walking each other home.

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

New data shows Europe has more cancer incidence and mortality than the U.S.

Christa Avampato
Photo by National Cancer Institute on Unsplash. “KRAS Protein Structure. RAS genes are mutated in approximately one-third of all human cancers.”

Did you know cancer incidence and cancer mortality rates are higher in Europe than the U.S.? I was shocked to learn this since I often hear the exact opposite. The World Health Organization’s International Agency for Research on Cancer compiled a study of 2022 data and the disparities cross the world are stark. Considering men and women, and all types of cancer, Europe had 4,471,422 cases in 2022 (22.4% of global cancer cases) and the U.S. had 1,832,550 cases (9.8%). When looking at mortality from cancer, the picture is even more disparate: Europe 1,972,982 (20.4%) and the U.S. 600,970 (6.2%). This ranking holds even when standardized for age. 

As a cancer survivor and advocate, I spend a lot of time poring through statistics. Lately I’ve been reading a lot of about cancer disparity between countries. I was prompted to investigate this after a cancer survivor in Canada told me one of the medications I took to prevent recurrence (Verzenio) is only available in Canada to those who have much more advanced cases than I had. 

Why are there global disparities between Europe and the U.S.? 3 main reasons: 

1.) U.S. Medicare covers cancer screening and treatments more generously
Once Americans hit age 65, they receive Medicare benefits. Since cancer afflicts more people over 65, they have access to benefits like cancer screening and treatments such as immunotherapy and clinical trials through Medicare. These Medicare benefits in the U.S. are more generous than those in Europe. This means cancer is caught earlier and there are many more options for treatments in the U.S. Both of these factors help detect and treat cancer more effectively.

Is Medicare perfect? No. It can and must be improved. In the case of cancer, it’s actually doing well when compared to care and coverage in Europe.

Smoking rates
We’ve heard it for decades now: smoking increases the risk of many types of cancer. In Europe, 26% of the population aged 15 and over smokes daily. In the U.S., 11.5% smoke either daily or some days. 

The U.S. market and government structure prompts cancer research and treatment development
Cancer research and treatment development requires significant financial investment because only 13.8% of medications make it through the first phase of clinical trials. To get the scale they need to conduct and fund cancer research, European countries need to collaborate. 

However, each country maintains its own regulatory policies, procedures, and data collection and analysis processes for cancer treatment. To collaborate they need to agree on these policies, procedures, and processes, and they must agree to share data, which has proven difficult. This causes delays and the scrapping of research projects. 

The U.S. regulatory system grinds slowly as well. Still, it needs only to contend with itself, not with another country’s issues. 

A global vision for cancer detection and treatment
As a cancer survivor, it’s been challenging and emotional for me to consider all of this global data. I’m privileged that I live in New York City, I had insurance through the Affordable Care Act when I went through my cancer diagnosis and active treatment, and have access to the best cancer care in the world. Had I lived anywhere else, my cancer likely would have gone undetected until a later stage. I may not have had access to the many treatments I’ve had (and will continue to have for another 7 years). 

There is a lot of hope and promise in the Biden Cancer Moonshot, started by Dr. Jill Biden and President Joe Biden. While the initial focus is domestic, there are already global efforts underway to expand access to screening and treatments to every corner of the world. 

We may never be able to completely prevent cancer from happening. We can vastly diminish its power, transforming it from the “Big C” into something that happens that we can manage and cure. That will take a global effort, and I know I want to be a part of that journey. 

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

How I endured 2 years taking Verzenio

Christa Avampato
My last dose of Verzenio. Photo by Christa Avampato.

A little over two years ago, I wrote an article about my decision to take Verzenio to prevent breast cancer recurrence. On April 14th, I took my last dose of the medication and now I feel like a new person. Taking Verzenio at the maximum dose for two years was one of the most challenging parts of cancer treatment. Still, I’m glad I took it as part of doing everything I possibly can to stay healthy. I’m beyond grateful that the medication was delivered to my door every month free of charge to me because my health insurance paid the entire cost – $14,000 per month for a grand total of $336,000.

The indignities of cancer treatment are many, and I’ve experienced most of them. Verzenio certainly caused me a lot of anguish. Every day I had at least a low-grade stomach ache, and often much worse. I carried medication to deal with these issues everywhere I went, and often had to use it. Alcohol and grapefruit were off limits. I worried about everything I ate because anything could make me sick at any time. I had to constantly manage fatigue that sleep couldn’t fix, insomnia, depression, hair thinning, dry and sensitive skin, weight gain and aching joints, decreasing bone density, and the possibilities of developing liver and lung issues, being immunocompromised, and having anemia. Mercifully, my blood work was always normal when it was checked by my oncologist every three months – partly from my constant management of my diet and partly because I was very lucky.

Despite all that, that were bright spots, too, when I would discover something that helped, at least for some amount of time. Probiotics lessened the stomach issues, and I stopped drinking coffee, paired everything with carbs, upped my protein intake, and limited spicy, acidic, adventurous food. Audiobooks, an eye mask, and meditating helped me sleep, or at least rest. When I couldn’t sleep, I would often imagine myself traveling over coral reefs in the company of my dog, Phin, with a whale tour guide whom my imagination named Blue. Creativity was a great help on sleepless nights.

Shampoo and conditioner bars from Kitsch slowed the hair thinning. The dryness of my skin was eased by products from Good Molecules, Cetaphil, and HyaloGyn. Daily exercise and fish oil supplements eased my aching joints. The Zometa infusions I get every six months are helping me regrow the bone density I’ve lost. I kept anemia at bay with daily protein shakes. I bought a digital scale to monitor my weight every day, and experimented with recipes that were high nutrition, low-calorie, economical, and not too complicated to make.

Managing depression required a daily recalibration. My dog, Phineas, was my biggest support in that effort. Losing him in January of this year was a devastating loss and the grief at times felt unbearable. Verzenio made his passing even worse. To keep my head up, I did something every day that brought me joy – I spent time with friends, listened to music, watched movies, read books, visited museums, and did things I loved to do – writing, learning from and about nature, running, taking long walks, making art, and studying for my master’s program in sustainability. Joy was one of my saviors during active treatment and it helped with Verzenio, too. Though sometimes I had no choice but to just let myself feel sad, frustrated, and depressed. I cried a lot. Knowing the depression was driven by the medication helped. Knowing this was my now and not my forever encouraged me to keep going, to keep moving.

If all this sounds exhausting, I can assure you it was. Now that I’ve been off the medication for nearly a month, I can see how much effort it took to be on it. In the moment, I tried my best not to acknowledge that. I’ve spent most of the past four years since my diagnosis with my head down, focused on getting to this finish line.

Now that I feel better and lighter, I’m lifting my gaze. Right now, the field of my future is wide open. That’s equal parts exciting, and scary. I don’t know what lies ahead. Sometimes I feel like I’m on the edge of a cliff. And that’s okay because even on the cliff, I’m dancing, fully alive. I’m just glad to be here, and to be healthy. Verzenio was a part of making that possible.

So, if I had it to do over again, would I take Verzenio? Absolutely, unequivocally, yes. This is a life worth fighting for.

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.