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Write every day: Election Day 2020

Hello loves. It’s the middle of the night. It’s quiet. It’s dark. I’m awake because my head slumped a bit because I currently sleep on an incline to help my drains function properly. This causes my hands to go numb and my muscles to spasm. It’s temporary. I get up, I take meds, and it passes pretty quickly.

This is a common side effect that happens as part of the healing process but it’s a side effect with a huge upside! It means the swelling from my surgery is way down so now my muscles are aware that there is a lot of tubing in me that was not there a week ago.

Basically, I’ve got a network of tubes in me that’s similar in design to the NYC subway system in lower Manhattan around Fulton Street!藍藍藍 It’s all temporary and my great hope is that my plastic surgeon will take it out on Wednesday at my follow-up appointment.

Now, speaking of Wednesday…I know many of you (myself included!) have a lot of anxiety about this election. There is a lot on the line. More on the line than we’ve had in any other election in modern history. So I thought I’d tell you a little story that will maybe help ease your mind and heart.

No matter what happens on Tuesday, there is likely to be a period of time that will feel uncertain and frightening and unstable. We might feel hopeless or powerless or paralyzed.

When I went through my apartment building fire 11 years ago, I felt that way every moment of every day for over a year. But no one knew that except my wizard of a therapist. I was afraid all the time. But I had to go to work. I had to keep up the charade of strength because we were in the middle of a recession, I had $100K in student loans, and I had no one to help me financially. My life was a literal house of cards. And it was fucking terrifying.

At one therapy session, I broke down and I told my therapist how much I hated therapy because it felt like every session I was just tearing off a painful bandaid in the name of truth that was just giving me more pain.

In his wise and calm demeanor, he listened and simply said, “Well now we’re getting somewhere.” And as always, he was right. We were getting somewhere, even though it was somewhere I didn’t want go. It was a road I couldn’t avoid.

I was building emotional muscle. I was learning what hurts, being able to face it, name it, and not flinch. That practice took away my fear of pain and replaced it with curiosity, compassion, and gratitude. I learned that I could be scared and still take action to take care of myself one small step at a time.

For me, 2020 has been a version of my 2010 but this time I had tools and skills I didn’t have before. I know now that being soft and flexible and caring is a kind of strength that can withstand and grow under intense pressure, that it can absorb shock and make something meaningful and beautiful and joyful from it that helps me and helps others.

This is not an easy path but it’s one that’s given me confidence and courage to face anything and everything that I must face, even cancer, even death.

So if you find yourself today, or any day, struggling to breathe, struggling to even imagine how you will get from moment to moment, close your eyes and remember you are the light that illuminates your own path. The answers aren’t out there. They’re in you. They’ve always have been in you and they always will be. And know that as you close your eyes and breathe, I’m doing the same. I’m with you and you’re not alone. We fight together for each other as we heal.

My meds are kicking in now so I can get a few more hours of sleep before the dawn arrives. Whatever the day holds, I’m here.

Write every day: Releasing grief

Yesterday I hit a big goal! By Halloween, I wanted to be able to take a walk around my neighborhood. I took 2 walks with the help of my sister, Maria, and my dog, Phin—one for an hour in Central Park and another for 90 minutes in Riverside Park. These were my first walks outside since my breast cancer surgery. It felt glorious to fill my lungs with fresh air and to feel the sunshine on my face.

And then, this morning happened. I had a nightmare last night that I was surrounded by my friends but no one could see me or hear me. I was already on edge from that when I mistakenly dropped one of my chest drains, painfully pulled at my stitches, and caused some pins and needles in my hand. And to top it off, I got my period.

Together, those three things broke me right along with my concerns about the election results, the “what-if” scenarios that haunt me, and the spaghetti tangle of tubes under the skin in my armpits that remind me of the NYC subway system.

My sister rubbed by back and I just wailed out of pain, fear, frustration, and anger. It felt like a dam just broke in me and an ugly cry poured out of me. It passed pretty quickly, as many things do, and it was needed.

“You can be grateful and still be upset,” my sister said. “You have to let this out and it’s okay.” And she’s right. We hold so much in times of difficulty, emotions and concerns that are at constant odds with each other.

We’re all holding so much right now. We’re grappling with massive uncertainty and uncharted territory in which it often feels like we have little to no control.

I learned today it’s okay to feel all that and then some. To admit it to ourselves and others. To cry over it. To do whatever we need to do to get through it so we can keep going. It’s not easy and that’s why we have and need each other. The only way we’re getting from moment to moment and day to day is together. And I’m grateful to be with all of you.

Write every day: I lived

This is where our story begins.
Fade in: exterior NYU Langone Health hospital on the east side of Manhattan. Day.
This is the setting where I physically walked in alone with cancer.

This morning, I watched the sun rise behind the thick cloud cover over the East River. I asked my queen of a nurse, Esther, if she would take me to their picture window she had showed me last night so I could see the coming of the dawn. I have fewer body parts now but my heart has grown exponentially. Gratitude, gratitude, gratitude for every moment, every breath, every kindness.

I cried watching the coming of the dawn because the only words that kept coming to mind were, “I lived. I lived.”

In a few hours, I’ll walk out of the hospital on my own two feet without cancer. In about a month, Act 2 begins with a set of treatments to kill any microscopic cancers that are trying to hide from me. My stunning medical team at @nyulangone will turn over every cellular rock to crush this cancer. Science and I are in it to win it, and we will.

The operating room was incredibly cool. I felt like I was in NASA mission control! Before I went under, my surgeon held my hand, and said, “Sweetie, we are getting every single bit of this cancer today and you are going to heal.” That was the last thing I remember.

When my surgeon came to see this morning, I started to cry out of gratitude. She said to me, “Friend, I am so glad to be on your team. I know this has been difficult & painful to go through. It’s been hell. You have a whole team of people here rooting for you. Your surgery went exactly as planned. You are young. You are healthy. You are strong. We will get to the other side of this.” I cried thanking her for saving me.

I cried again saying goodbye to my nurse, Esther. My heart is so full. There’s so much compassion in this world & we can gift it to others. We’re all just walking each other home.

Write every day: Genetic testing saves lives

I spoke with my genetics counselor at NYU. The science of genetic testing and how it impacts health is fascinating. Happy to share that my genetics, at this time, show I have no definitive predisposition to any kind of cancer. There is one gene that has an ambiguous result that may or may not be an indicator in some people. More scientific research studies by geneticists are needed to make a determination one way or another on that gene and my test results will help that research.

Every day we learn more about genetics and there is much more we don’t know than we do know. Every year, I will have a follow up with my genetics counselor to see if they’ve learned anything new related to my genetics.
Now that I’ve been tested, I’ll be eligible to participate in scientific studies that will further the science of genetics and will be used to help others.

My results will also be helpful to my siblings and to my nieces so that they can be properly screened and tested to protect their health. One huge lesson I’ve learned in this cancer ride is that the two best things we can do is take care of our bodies and detect health issues early.

For more information on genetic testing, here is an informative link from the National Cancer Institute:
https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet

Write every day: Curiosity Stream for healing

A week from today I’ll be in surgery. I’ll be home the next day to begin recovery prior to treatment. What will I be doing in that time? Sleeping, eating healthy food, snuggling with my dog, and watching Curiosity Stream thanks to my friend, Ken, who gifted it to me. Curiosity Stream is a collection of documentaries—my favorite genre of film—in all my favorite subjects: science, nature, history, and technology. I’m ready to activate my imagination, curiosity, and joy as part of my healing regimen.

Write every day: Matthew McConaughey’s sleep story

With my cancer diagnosis, I was having some (understandable) trouble sleeping. One thing that’s helped me tremendously is Matthew McConaughey’s sleep story about the power of wonder. Dinosaurs & stargazing included. It’s now my nightly ritual.

Listen to this sleep story by clicking here.

Write every day: Brains. Heart. Courage.

Wicked the Musical

T-minus 14 days to surgery. When I was on my way to my appointment where I would be formally diagnosed with early stage breast cancer, I walked through a near-empty Times Square subway station and saw this Wicked the Musical advertisement. Brains. Heart. Courage. This is how we survive.

Broadway shows and I are resting, healing, and protecting ourselves, and will be through the Spring and into the beginning of Summer. I timed out my possible treatment plans and it looks like Broadway and I will emerge around the same time renewed, restored, regenerated, and recharged. We’re building back better than ever.

Write every day: Falling apart, falling together

When things are falling apart, something new is falling into place. A cancer diagnosis feels like this. It’s a long and winding road that you have to take one step, one day, at a time because the next step is all you can see. Uncertainty abounds.

You put your trust and faith in science. You pay attention to your body like never before. You lean on friends. You rally, you fall, you rally again.

It’s a rollercoaster mentally, physically, and emotionally. You learn what matters most. And in all the difficulties, you do find joy and gratitude and light. They aren’t always easy to see and sometimes you need a good cry to clear away the haze.

So you call a friend and you cry and then you get up again because that’s all you can do. The sun rises every morning and so do you.💛

Write every day: Knowledge is power in healthcare

Me at New York Public Library with the lions, Patience and Fortitude

Knowledge is power, my loves. This journey to kick early-stage breast cancer in the a$$ will require patience and fortitude. I’ve got my lions and we’re going to rooooooooar! We’re also going to vote because every person deserves the kind of care I’m getting at NYU Langone.

I went for an MRI and it wasn’t bad at all. Sort of sounds like a cacophonous modern classical composition. On a medical espionage mission, we are going to use the best science to find out what the hell this cancer is up to and show it no mercy.

My MRI results showed that there might be a second lymphnode involved in my breast cancer. I had it biopsied and it’s completely normal. I was so happy I could’ve done cartwheels down 5th Avenue.

As I looked around the hospital room at NYU, all I saw was a sea of people who have dedicated their lives to restore my health. There was such a swell of gratitude in my heart for all of them. In a world of cancer, there are many blessings on the road to wellness. My care team is a gift.💜

It feels odd to celebrate anything just after being diagnosed. Brian, my therapist, said celebrating every single win is crucial to healing. It’s a part of the journey. It’s medicine I’ll gladly take.

Now let’s go crush cancer.

Write every day: How to advocate for cancer care

So many incredible people have asked me what they can do to help me through this time. I’m so grateful for the love and support and I know I will need a lot of it in the year ahead. Today, here’s what would help most:

– Vote on November 3rd to protect healthcare and the environment

– Write to your representatives—federal, state, and local—to advocate for better access to early health screening

– Call your doctor to get your annual physical and discuss the screenings you should get

– If you’re a woman 40 or older and haven’t had a mammogram in the past 12 months, please make an appointment to get one. It could save your life, just like it did mine.❤️

****

If you’re wondering what to say in a letter to your reps, this is the letter I wrote to New York’s Governor Andrew Cuomo yesterday.

Dear Governor Cuomo,

I have appreciated all you’ve continued to do to keep New York safe during the COVID-19 pandemic. Now I’m especially appreciative because on Monday, October 5th I was diagnosed with early stage breast cancer. I’m 44 years old and this was my first routine mammogram. I have no symptoms and had no idea anything was wrong until I was screened.

Within 100 hours, I went from diagnosis to care plan with a top-notch medical team at NYU Langone. Exemplifying New York Tough, I’ve chosen to have the most extensive surgery—a double mastectomy with reconstruction—so I don’t give cancer anywhere to hide.

Despite a cancer diagnosis during breast cancer awareness month in the middle of a global health pandemic and less than a month before the most critical election in modern history, I’m lucky. I was able to get an appointment to be screened despite COVID. I have insurance that I buy through the NY Health exchange because I run my own business, and I have access to the best medical care that exists. Every person going through cancer should have what I have. Most don’t, and that has to change.

I also advocated with my doctor for a mammogram before one was due. The CDC and and American Cancer Society guidelines recommend mammograms starting at age 45 for women of average risk. If I had waited a year, who knows where I would have been by then. And sadly, that’s where so many people find themselves. We can change that, and we must.

I’m writing to you to find out how I can assist in the following:

Change the guideline for routine mammograms from 45 to 40 in New York State and make them easier to get

– 4 years ago, the CDC and the ACS changed the guideline from 40 to 45. I have read the medical research on why this decision was made. Given my own personal circumstances, I believe that New York should issue its own recommendation of age 40. Though people who work in cancer care adamantly opposed the change to 45, it was made anyway. This has put thousands of young women like me at risk of having their cancer undetected until a much later stage.

– Additionally, the process to get a mammogram is absurd. You have to get a prescription to a screening center from your doctor. In my case, my insurance changed in January and my former doctor doesn’t take my current insurance. So I had to find a new doctor, which can be a difficult process in New York, to get a prescription in order to get a mammogram. I was extremely lucky that I got a referral from a friend, could get an appointment with a doctor who was accepting new patients, and doctors’ offices finally opened again now that the COVID numbers have dropped. A woman should not have to jump through this many hoops and pray for good luck in order to take care of her health. We should be able to walk into any screening center, present our insurance card, and get a screening once per year. The process should be as routine as getting a flu shot because our lives depend on these screenings.

Mitigating climate change to reduce the impact of cancer

– Every two minutes, a woman in the U.S. is diagnosed with breast cancer. Most of them have no family history of the disease and their cancer is environmentally-driven. We are surrounded by toxicity in our air, water, soil, food, and consumer products, and most of it is difficult at best for any of us to escape. We are not apart from nature; we are a part of nature. We need policies that show we understand that.

As a biomimicry scientist and product developer, I’m determined to help New York City become the healthiest and most sustainable city in the world. I know this is a goal you also believe in and I’m hoping there’s a way I can be a part of your broader plan for New York City and the state as a whole.

Again, thank you for your leadership and commitment to the people of New York. I don’t know what we would have done without you at this time. When there is so much to worry about in the world, I’m grateful that in New York we’re taking care of each other by being smart, united, disciplined, and loving.

I look forward to hearing from you or a member of your team, and helping make New York healthier for all people.

Ever upward,
Christa Avampato

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