In late September, I had the privilege to attend the ILC International Symposium in San Francisco. It was so great to hug my fellow advocates in real life, to brainstorm with researchers and clinicians, and to hear about the amazing work being done to crack the code of lobular breast cancer.
I came home and went about my life as I do even during Breast Cancer Awareness month - work, dogs, house chores, and it has been so warm here that outdoor swimming is still a thing. I put on a swimsuit - and there they were. 2 giant lymph nodes sticking out of my groin, wildly larger than the other side and visible to the naked eye. Once before, 7 years ago, I felt a lump in my breast that made me sick to my stomach. I had that same feeling seeing those nodes.
I've had a few days to spiral out of control, to see my oncologist, and get an ultrasound all of which just confirms what I already know. These are bad. They can't tell from ultrasound exactly how bad, but they have some very bad characteristics on the pictures that indicate what they are - most likely metastatic deposits of cancer. I've gone down the differential pathway that has ruled out infection, other swollen lymph nodes (none), don't see any weird moles or skin changes on my leg, and now we're left with the exciting game of "find the cancer".
This would be weird for breast cancer - usually. For ILC? It loves the bladder, the uterus, the outer lining of the GI tract - all things in the area that could be full of my breast cancer. It also could be an entirely different cancer - vagina, cervix, rectum all drain into those nodes. The differential is wide, and it is bad. How bad? Don't know. But cancer in lymph nodes is cancer that has spread from elsewhere (except lymphoma), and that means metastatic cancer by definition. Sure, they could be "local" metastases, but that isn't very reassuring. If they are cancerous, they are spreading.
Here's the part where it's not my first rodeo - I've already had the freak out of a first cancer diagnosis, and part of me always expected this shit to return. I just didn't think it'd be so soon, or that I'd have an entirely SECOND cancer at the age of 51. I'm not sure right now what these are and my brain is out of control with the possibilities, but I've always been a "more info is better" person and thus am already planning for the absolute worst outcome.
I'm supposed to get on a plane tomorrow and fly 1/2 way around the world for a scuba trip that is my dream - sharks, night dives, wrecks, beautiful corals. My brain knows that not diagnosing this shit for another 12 days will make ZERO difference in my life expectancy - which is entirely dependent on what type of cancer cells these are and how aggressively they behave, not making the diagnosis tomorrow. So cancelling the trip makes no sense from a medical perspective. But I don't think I have enough mind control to put this out of my head and enjoy the trip - though the thought of this being my last scuba adventure for a while does make me think about just going.
Wherever this is headed, it's not good. Once again facing scans, needles, biopsies, radioactive tracers, maybe surgeries, maybe radiation, maybe chemo. And then, of course, facing death. It's too soon and it's too much after only finishing treatment for breast cancer 5 months ago. I was finally starting to see the possibilities of a few years between now and later when we could enjoy our lives, our home, our travel, our puppies, and each other.
When I think about dying my biggest heartbreak is leaving my husband - whom I met in 2016, and with whom I've only had 10 years. I want more time. I want to die of old age with him by my side 30 years from now. I want us to be able to enjoy all of the benefits of the brutal work we did in healthcare for 20+ years. We met so late in life, and my only hope was to have as much time together as possible. I don't want 5 years of bliss followed by 10 years of a slow fight against a cancer I can't beat, that ends up defining whatever time we have left. So today I am deciding not to let that happen.
Maybe I have metastatic cancer. It's sitting there in those nodes and 12 days from now it'll still be sitting there. But if I could have gone scuba diving with sharks in the meantime, I don't think I want cancer to take that away from me. I don't want it to define what's left of my time on earth, to ruin my marriage and my family any more than it has. I want people to think of me as the person who has traveled to 6 continents, reduced her own shoulder dislocation, got lost in the New Hampshire wilderness in the winter, and loves animals and mountains. I tried not to let breast cancer define me, though it changed me. Trying to destroy metastatic cancer has a way of defining one's life whether you want it to or not - but I think I'm going to try again to be that person I was before and without cancer.
Fiji - here I come. Carpe all the fucking diems. And fuck cancer.
