1. Can you share with our members what your life was life before you were diagnosed with MBC and how you got to the Stage IV diagnosis?
In early 2017, I was running my law firm and settling into parenting my boys, who were 1 and 3, and still tandem breastfeeding; my husband and I owed multiple properties and we’d just opened up the real estate closing part of the firm in addition to the divisions that addressed family law and foster care cases. We were busy every weekend, hosting play dates and networking functions at our house and office (sometime sat the same time!). In short, we were both juggling lots of balls in the air.
On March 8, 2017, after feeling a lump and seeking answers, I learned that I had Stage IIB breast cancer and was headed into some significant treatment options. Before addressing the medical issues and treatment, I had to abruptly wean both of my boys and dry up my milk. That started the process with a lot of sadness and loss. We were still adjusting and juggling differently as I started chemotherapy in June of 2017, after multiple surgeries and learning that I had an oncotype score that meant chemo would be helpful. On June 27, 2017, after a medical mistake led to evaluating tumor markers in my blood, I learned that I’d been Stage IV from the beginning and within a week, I was in surgery to insert titanium rods into both femurs. Overnight, everything changed yet again.
I do want to mention that as part of my initial testing, my surgeon tested me for BRCA 1&2, which was negative. After we found out that I’d been Stage IV from the beginning, we did the full genetic panel and discovered that we carry the ATM germline mutation in my family. Multiple members of my family have had to make decisions, including for prophylactic treatment. Later on, we did genomic testing of the original tumor and discovered a list of somatic mutations, mutations that just show up in the cancer, including the PIKC3A mutation, the only actionable mutation.
What is your official diagnosis? Tell us about your current treatment.
Testing on the original tumor in my left breast, led us to understand that the cancer in my body is categorized as Invasive Ductal Carcinoma with lobular features (a/k/a mixed type), I have a very high percentage of estrogen and progesterone receptors, making me very sensitive to hormone therapy, and I have a low amount of Her2 receptors, meaning that I am Her2 low and may benefit from some treatment targeting those receptors at some time. The original tumor was grade 2 and I’ve had mets to my bones only since my original diagnosis. Further biopsies have not been successful since it is very difficult to biopsy bone mets due to the calcification process.
Because they thought I was stage II initially, I completed intravenous (IV) chemotherapy at the time of diagnosis, Adriamyacin and Cytoxin in 2017. Once we knew that I was actually Stage IV, my team decided to skip our initial planned 12 weeks of Taxol and instead moved to targeted therapy (pills) Ibrance and Letrozole as my first line of treatment. I was stable from August of 2017 through August of 2019, when I experienced the first progression, still in my bones. Since we’d already done genomic testing on my original tumor, we knew that I had the PIKC3A mutation and shifted to Piqray and Faslodex, my second line of treatment. Intitially, it looked like Piqray would be effective, but by the second PET scan, the tumors in my bones were waking up and becoming more active. So, instead of initiating my 3rd line of treatment, my medical oncologist decided to add Kisquali to my regimen. As of March, 2020, I was put on this new regimen, which is still working and keeping just about all the mets in their place.
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
While I don’t embrace the idea that cancer makes anything better, including life, the one thing that I do embrace strongly is the idea of silver linings. The significant silver lining I’ve seen from MBC is that my decision making is easier. The “fluff” or things that don’t matter as much overall are so much more clear. Within a week or so of my diagnosis, I made the decision to close my law office and “retire,” so that lifted so much stress and focus away from me that I could then put all of my energy towards my kids. Within a few months, we’d (my husband, two kiddos and cat) from Orlando to Miami and moved in with my parents.
After that moment, where I knew what I needed to do, the last 4 years have been an ongoing learning experience and application of my new outlook. Yes, I still make mistakes and get involved with organizations or projects that aren’t a perfect fit, but I’m much better at seeing that and pivoting to either removing that item or shifting to a better focus. Having additional family time and the ability to drop balls that I’m juggling has been so key in my quality of life.
How do you live your best life now, thriving with a metatastic diagnosis?
The best answer I have is that I put myself first. As wives and mothers, this is often extremely difficult; and yet, I see clearly that I have to put myself first so that I have some energy to give to my husband and children. What this looks like is prioritizing not only the traditional cancer treatment, but also and in addition, the complimentary care that Ive sought out to ensure that my body and organs are strong enough to deal with the traditional cancer treatment.
What makes you happy, and where do you find the most joy? Is this different than BC (before cancer)?
As an introvert, I get my energy from recharging on my own and that hasn’t changed. I have found that I do need more time on my own to build up energy for dealing with things/people. The first answer to this question is my kiddos — being with them gives me the most joy and that hasn’t changed since before cancer although they have grown up so much since my diagnosis. The second answer to this question is those in the MBC Community — this is different, obviously, since my diagnosis, since I hadn’t met anyone in this community before 2017. The joy and happiness that come from these relationships has surprised me in so many ways and remains the main thing I seek out now.
People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing someone has said to you?
Variations of — you are so strong/you are an inspiration/you are so brave, courageous, etc — all of these comments are, to me, cliches that people get away with too often. I know that I’ve been guilty of saying things that make me feel better but don’t actually mean much of anything to the people who are struggling. In dealing with the most difficult thing I’ve ever had to face, I do have to be resilient and strong, etc., but remarking on that is just so not helpful. I feel weak, I feel forced into a corner, I feel inadequate, etc., and it’s not helpful for people to point that out.
What did or do you find most helpful for those wanting to encourage or help you?
I find that genuineness is the key, I can really tell if someone wants to just leave a comment on a post to make themselves feel better or if they really want to engage. Saying “I don’t know what to say, but I’m here to listen” or “I have no idea how you do all that you do, how can I support you.” These are true statements, but lead to a further conversation. I’m not always good at expressing what I need, but knowing that there are people open to listen is huge.
Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
I do feel marginalized and overlooked by the pink tide of “awareness” not just in October, but all year round. It feels to me that the only “valid” experience is the one where we are celebrating with a smile on our faces and that overlooks the truly dark side of dealing with a terminal diagnosis. It also communicates inappropriately, I believe, that breast cancer is the “easy cancer,” which severely affects our ability to advocate for further funding for research.
I would change the focus as follows: 1) eliminate all funding for any study that looks at “awareness,”; 2) invest 75% of all funding towards research in addressing MBC rather than early stage questions; 3) ensure that wherever breast cancer is discussed, MBC patient(s) are present; 4) establish fines and other consequences on those organizations that falsely claimed to be seeking a cure, when that is not the focus; and 5) include MBC patients at all levels of care and research as advisors.
What do you want people to know about YOU and your life living with this disease?
I am living with cancer, cancer has not taken over my life entirely. Yes, I do a lot of patient advocacy and this is important to me and so many others, but what is really important to me are those people living with me in my house. If I cancel something or require treatment or other efforts to fit around my kids’ school schedule or their activities, that’s a decision that I won’t budge on because they are my first priority.
What is one “action” point everyone could do TODAY to promote awareness of MBC?
Every single person is able to support and promote the efforts of many organizations like METAvivor or Project Life or Living Beyond Breast Cancer who are working to raise awareness about MBC. This could be sharing a post on social media or suggesting a new place for education or donating money (even sharing a birthday fundraiser for one of these organizations is helpful). Any time someone wants to get more involved, each of these organizations have opportunities.
Do you have a favorite poem, quote or work of art that you would like to share with us?
A few years ago, I stumbled upon the poet, Anya Silver, who was murdered by MBC in 2018. Her poetry became the framework for the play, IV Our Lives, which was drafted after her widower, Dr. Andrew Silver, interviewed over 100 men and women living with MBC. If you want to learn more about the play, you can access the website: www.IVOurLives.org. I was cast as the one reading her poetry, which has been one of the greatest honors of my life.
One of my favorite poems is:
"How to Talk to a Sick Woman
Do not make me your nightmare. Refrain from invoking me among
the A,B,C’s of your fear.
(There’s no cure, it’s true. That’s why I’m so blue.)
I’m not your “it could be worse”
or proof of the smallness of your woes. My bad luck is not your good luck. (And by the way, fuck you.)
Your pity, though meant to be kind, undoes me. I find it dreary.
Nor am I the Madonna of cancer, your bow-arched Amazon.
Make me your inspiration
if you like, but I don’t deserve praise. My days are as ordinary as yours.
And when I die, what will you do?
You’ll have lost your light-strung Santos. Cede me back my story.
My veins open, then close like magic.
I don’t dread death more than you do. Only I get to say I’m tragic."