7th Cancerversary

Amazingly enough, today marks seven (7) years, eighty-four (84) months, three hundred and sixty-four (364) weeks, two thousand five hundred fifty-five (2,555) days, sixty-one thousand three hundred, twenty (61,320) hours, three million six hundred seventy-one thousand two hundred (3,671,200) minutes, and two hundred twenty million seven hundred fifty-two thousand (220,752,000) seconds since I was told “you have breast cancer.”

Whew, just typing all of that out was a lot!

Every time I think about milestones and how much has changed since March 8, 2017, I am blown away. That was the day when I heard that I had cancer and that we thought it was early stage such that I would undergo treatment and emerge on the other side to re-engage with life as I knew it. I remember that Elliot and I walked out of the room where the breast surgeon (who was also an interventional radiologist) gave us the results and then into another room where her nurse set us up with more information and more appointments than we knew what to do with. In the blink of an eye, I had an entire team of doctors used to working seamlessly together, communicating via cell phones and arranging care.

And everything began to happen so very fast. I had to make so many decisions about every aspect of my life in a short period of time with limited understanding of what was going on. And we now know much more about just how limited that understanding was. Whether it’s who I am or my personality or whatever, I’m not the type of person who normally looks back and regrets decisions that I made with the information I knew at the time I made a decision. To me, there is little point in bemoaning what could have been when all my energy is required to face today and what is.

At the same time, here’s a few things I think could have been done differently.

First of all, that original breast surgeon who told me that I had cancer was amazing; at the same time, she only did genetic testing for BRCA 1&2 rather than the entire gene panel associated with genetic breast cancer risks (even back in 2017, we knew more than just BRCA although we know even more now). It would be a few months later that we realized that I carry the ATM genetic mutation, as well as being Stage IV, and my care had to be adjusted from there. If I was in the office learning that information knowing what I know now, I would have asked for the full panel along with a PET/CT.

Secondly, I would have reached out to more people going through the same experience. Back in 2017, I thought that my business would be too negatively affected by me disclosing openly that I was being treated for breast cancer and I kept the news very very private. That also meant that I had little interest in attending support groups or connecting with other women who knew what I was going through. I’d be more apt to reach out if I had it to do over again.

Third, I would have focused on adjusting my life and the things I was involved with to give myself the space to truly accommodate the experience of breast cancer rather than forcing the breast cancer treatment to revolve around the things present at that time in my life. At the time I was diagnosed with breast cancer in March of 2017, we thought I was stage IIb and it was reasonable to assume that I’d finish treatment and be done with it. What I didn’t understand then was that there was no going back to “normal,” that life changed irrevocably and everything needed to be re-evaluated through that lens. It’s taken me a lot of those intervening years to understand what is really important.

Fourth, I had so many expectations of how others would step up to support me given what I’d done over the years for others. While I can’t say that I did things in order to receive something back, I did have a sense that those I’d supported over the years would feel some sort of pull or desire to pay it back. When that didn’t happen, I struggled with the relationships and struggled to understand why I was struggling. I’ve learned to adjust my expectations of others and not to impose what I would do on them. I’ve also learned to put my energy in those people and relationships that are truly reciprocal.

Fifth, I know that some people in my life didn’t (and often still don’t) know what to do and I didn’t know what to tell them. Even some of the struggle in point number 4 above might have been ameliorated if I’d been able to communicate better and point number 2 above would have helped me to gather the information that would help me better communicate. I’ve learned over the last seven (7) years that being clear and specific about what I need is so much better than being upset that someone has trampled on an expectation that I didn’t communicate. I’ve learned over the last seven (7) years that I have to put myself and my own needs first and that’s ok, not selfish or wrong.

That’s my top 5 things and I don’t spend time beating myself up over not doing these things because I did the best I could with the information I had. If you are newly diagnosed and attempting to figure out how to navigate this brand new experience, I hope these nuggets might give you a starting place to figure out your next steps.

For now, I’ll bask in the fact that I’ve lived for seven (7) years with malicious cells running around inside my body unsuccessfully trying to kill me. With everything that I’ve done from traditional treatment to complimentary care to diet changes to eliminating stress and toxic people and expectations from my life, I’m still alive and even though I’m now being treated for heart failure and I don’t know if Enhertu is working, I’ve outlived every statistic available. I don’t know what the next scan, the next treatment, the next experience will bring, but I can say to death, #NotToday.