How did you find out you have breast cancer and how old were you?
I was diagnosed with Breast Cancer shortly after my 29th Birthday. In February of the following year I discovered that it had metastasized to my bones, after going through 7 chemotherapy treatments. Two years later I had a palliative single mastectomy because of a very complicated series of events. I opted for a symmetry surgery but decided against a third surgery to rebuild my nipple. I still have only one.
I felt the lump in my chest while I was lying in bed with my (now) husband, on a special birthday trip to telluride. I had just had my yearly OB/GYN appointment where there was nothing there, so I knew as soon as I felt the cauliflower-like lump in my chest that something was very wrong. If you do find something, rapid change and asymmetry are important signs that it's not something benign like dense breast tissue or a fiber adenoma.
I know this is a sensitive subject, but can you tell us about your treatment plan?
Because my cancer is metastatic (meaning it spread to my bones) it is considered incurable. That said I've had clear scans every year since I had the breast lump removed.
The problem is that on a cellular level, the bones (where my cancer metastasized) provide a measure of protection to the cancer from the chemo. The good news is it also works the other way around. Our main goals are to keep the cancer from spreading to vital organs, or enzyme producing organs, which is what would be lethal. People don't die from Breast Cancer in the breast, they die when it metastasizes to other organs. Because of this, I tell people it's like I'm a diabetic. There something in my body that isn't working properly (in this case, the cancerous cells) but as long as I take care of myself and the medicine continues to work I am doing pretty well. It's very different managing cancer like a chronic medical condition. It's a lot of trying to mitigate the side effects so I can tolerate the chemo for as long as possible. My current treatment involves a form of chemotherapy every 21 days, hormone control in the form of a daily pill and a shot that throws me into chemical menopause every 3 months, and a lot of diet, exercise, and self-care. I also do a lot of eastern medicine to help with side-effects including acupuncture and herbs.
Where did you get your strength and resilience from?
My parents. My dad was a Holocaust survivor, and it's from him I learned the power of storytelling to enact change. He spoke about the horrible things that happened to him in a way that inspired people to action, and I hope I am doing the same with my activism around “Positive Beauty” - doing things because you love and want to care for yourself instead of punishing yourself for the things you have that don't fit into a very narrow standard of beauty.
My mother, without whom I could never survive. She supports me in a billion different ways, but most importantly she taught me that you cannot control all the things that happen to you, all you can control is how you react to it.
My husband, who besides being my best friend allows me to share a lot of very private things, and constantly provides me with the support and resources I need to put all my energy into staying positive.
My friends, who remind me that we are not in competition with each other, that we all benefit when we lift each other up, and that laughter really is the best medicine.
My readers, who are a constant source of support, and who make me keep going when I wonder why I should at all.
My extensive home facial resources, because when I'm not feeling good the right face mask/microcurrent facial/bath/serum can really reconnect me to my gratitude for everything my body does.
What has been most helpful to you in the support you have received?
Besides all the comments, texts, DMs, and love I get from the universe, which is just everything to me, I'd have to say money. Just having a little money for a pedicure or a new brow pencil, and not worrying how I was going to pay for co-pays and food, just being able to afford all kinds of care, including retail therapy, was everything. People always ask me what presents they should get for people going through something like this and I will always say cash or gift cards. The list of things you can't do is so much longer than the things you can, and it can take so much energy to explain that to people. Your skin, digestive system, even your taste buds change. Also, you have so little control over so many things, it's nice to have control over shopping (laughing at herself.)
Are you open to sharing if you were tested for the BRCA gene?
I was tested for BRCA and I am negative. The science of genes is so new, there's still so much to do. When I was diagnosed 5 years ago they tested for 16 things, now the panel is 32 (I just got retested for free, hot tip - if you've been tested in the last 5 years a lot of places will redo with the updated panel for free if you didn't get the most up-to-date one.) That said, healthy 29 year olds should not get cancer. So the final conclusion so far is “unknown genetic influence.”
What are some ways you would advise young women to do to help lower their risk for breast cancer? What is your message to other women about the importance of screening? Especially younger working women?
People always ask me this. First and foremost is what they call Breast Self-Awareness, knowing what your breasts feel like during different parts of your cycle, and noticing changes. Then asking a doctor to check those changes out. If you're lucky you see a doctor once a year, so they are much less likely to notice early signs of changes. But if you shower/apply body lotion and pay attention you're more likely to notice the changes. This is really the best/only early detection method for young women, with breast tissue that's too dense for mammography.
I think the second thing is to support breast cancer research. Not awareness, which is great but very well-funded at this point (75% of all funding goes to this nebulous category) but scientific research. There is still no cure for metastatic breast cancer. There is still no early detection method for young women. Breast cancer has the highest mortality rate of any kind of cancer in people aged 15-30. We just don't catch it early enough. We need hard science**, not just pink ribbons.
** I also support direct services, because the average cost of a breast cancer diagnosis is $140k with health insurance. Getting care is expensive, and with so many women impacted by this disease it's a great way to help.
Lastly, I think it's not to be afraid. I know how scary it felt to find the lump. I did not want to go to a doctor, even though I knew immediately it was something. My husband had to force me. Even though it was too late for me by then (my doctors believe the cancer had already metastasized when I began chemo, even though the spread was too small to show up in my scans at the time) I am so glad I didn't wait any longer than I did because it could have been so much worse. Notice a change, go to the doctor as soon as possible. It's most likely nothing, but better safe than sorry. Stress makes everything worse, so it's worth it just for the peace of mind.
What message do you have for others who have been diagnosed with breast cancer?
I think I'd have to steal from my mom. You really can't control the expletive life throws your way, all you can do is choose how to react to it. I smile and moisturize often. I hug my puppies, friends, family, and whoever else will let me as often as possible. I try to be gentle with myself, and to be grateful for all the things I do have instead of letting myself get dragged down into a shame spiral about what I don't.
“I try to be gentle with myself, and to be grateful for all the things I do have”