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:
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.
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.
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.
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.💛
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.
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.
This is the face of someone with early stage breast cancer. It’s also the face of someone who is going to kick the sh*t out of cancer and give it nowhere to hide in my body. And in the process, I’m becoming a warrior of women’s health.
This is the longest I’ve ever been away from this blog since I started it in 2007. Now I’m back to tell you what’s happening. I have cancer, early stage breast cancer to be precise. I went for my biospies on September 28th and 29th, got a preliminary diagnosis of cancer, and then on October 5th received the confirmed diagnosis. 100 hours later, I had a full medical team, a surgery date, and a preliminary treatment plan that will be confirmed after surgery. NYU Langone Health moved mountains, and fast, to make it all happen and I’m so grateful.
It was the most terrifying week of my life. I wish none of us ever had to be on this journey at all, though since we’re here at this point I will make something meaningful and beautiful from it that helps me heal, helps other people heal, and helps the planet heal.
First thing’s first—I need this cancer gone from my body so here’s the plan:
– I will have surgery on October 27th. I chose to have a bilateral mastectomy with reconstructive surgery. I knew this procedure was right for me as soon as I was diagnosed. I will live a very long, healthy life and not give cancer any place to hide.
– After that, the doctors will run the pathology post-surgery and we’ll come up with a course of treatment. With all that information, we’ll be able to figure out a combo of chemo, radiation, immunotherapy, and/or medication.
– I will have a few subsequent surgeries in the coming year both for treatment purposes and reconstruction. (If, like me, you really geek out on the science, here it is in a nutshell: my cancer is estrogen positive, meaning cancer feeds it. To shut down its supply line, we’ll use a combo of medication and removal of my ovaries. In a world of crappy breast cancer this is a good thing because it’s an added layer of treatment that wouldn’t be available to me if my cancer was estrogen-negative. Small victories that actually aren’t so small at all!)
What I do know with absolute certainty is that I’m shutting down this cancer party with a top-notch medical team at NYU and that your love and support is what got me to this headspace where I feel strong and empowered.
I’m suited up for battle. Now let’s do this. The dawn after the darkness is coming and we’ll be ready to meet it when it does.
A little news. I went for my 3D mammogram and ultrasound on Monday. My doctors want to do further testing in 3 areas that look a little suspicious. I’m having biopsies on Monday and Tuesday.
To be honest, the news was a shock. I just didn’t expect anything to come of this second set of tests and I broke down in the doctor’s office. Then I was counseled by many very wise friends, family members, and doctors that this next set of tests may very likely prove to be benign.
For now I’m counting my blessings that I have incredible care at NYU Langone and Caremount Medical, health insurance, and many friends who have shared their experiences that are very similar to mine.
A younger me would have bottled up these fears I have. I would have just carried them on my own because I didn’t want to burden anyone else with them. Over the last few years I’ve been trying to be better about asking for help, even if it’s just for good thoughts.
Asking for help is hard for me but if 2020 has taught me anything it’s that we need each other to make it through. And reaching out to people to ask for advice and help really helped me today. Doing what was hard was absolutely worth it.
For the next week, I’m planning to compartmentalize all of this and keep living my life as I would have before this new testing recommendation. I’m sure scary thoughts will creep in here and there. I’m sure I’ll cry. And I’m also sure that I’ll keep going—enjoying each day, taking care of myself, and taking care of others.❤️
The GOAT. Forever. For always.
Justice Ginsburg will be the first woman to lie in state. Even in death, she breaks barriers.
Her fierce support of others, determination to beat disease over and over and over again, and passion for creating a better world for all people is a model we should all aspire to. We are powerful, in our own person and as a community. We matter.
She is gone now, and her memory must be both a blessing and a revolution. She stood up for all of us for so many years. Now it’s time for all of us to rise for her legacy and for each other.