Boo(b)...cancer
To start, thank you so much for the birthday wishes and for all the love and support sent my way. Life has been life-ing and I am only just now catching my breath. But please know, even if you haven’t heard much from me, how much I appreciate everyone.
Ok, so cancer update…
From the very beginning of my breast cancer journey, I was impressed with how quickly everything moved forward. I was able to get appointments with doctors within weeks of my positive biopsy. And then when I met with the doctors, they were able to tell me the type of cancer, how fast it was growing, how large it was, and whether it would be responsive to hormone therapy. All from a biopsy and some imaging.
In contrast, it took months to get my medically-complex daughter, Adelaide in to see the right specialists. And after doing every test commercially available, and then every test only available to researchers, we still couldn’t determine the cause of her seizures, where they were originating from in her brain, or how to treat them. In our early days navigating the medical world, I was shocked to realize how little the doctors understood about the brain. At how much guesswork was involved in her care.
But with my breast cancer diagnosis it all felt different. My regular annual screening had caught the cancer before it was life threatening. The doctors were exceedingly sure of their treatment plans because they had the necessary data to back it up. My surgeon never even sat down in our first few appointments with her, telling me if you have to get cancer, “this is the kind you want to get.”
When I brought up this vast difference between my epilepsy vs breast cancer experiences to my surgeon, she said, “You can thank the millions of women that came before you who walked billions of miles to raise money for breast cancer research.”
That’s the difference, I thought. Research is the difference. This early diagnosis, basic treatment plan, and best-case scenario outcome is because of the billions of dollars that have been spent on breast cancer research. How incredible to be on the receiving end of actualized research.
And then the test results from the tissue sample taken during my lumpectomy hit my MyChart account. I didn’t know what all of it meant – but I knew it wasn’t good.
“You’ve never had breast cancer before, Kelly.” Miguel tried reminding me. “Let’s wait to see what the doctor says before freaking out.”
At my lumpectomy follow-up appointment, when my usually confident, bordering on arrogant doctor finally sat down with the energy of a deflated balloon, I braced myself.
“The tumor was over three times the size of what we saw on the imaging….because it was slow growing…didn’t show on imaging…not stage one, actually stage two…margins were clear of the tumor, but there were pre-cancerous cells in over half the margins.”
Meanwhile, in my brain… Is this actually happening? What does this mean? She’s saying I need more surgery. But I don’t want more surgery. Kelly, stop thinking and listen to her! You need to listen to what she is saying!
The good news is that I am going to be ok. I am going to survive. Also, the cancer never made it to my lymph nodes, which means I won’t need radiation or chemo. The bad news is that because of extensive pre-cancerous cells (DCIS), I will need to undergo a mastectomy to prevent future tumors.
I wanted this diagnostic and treatment journey to be straight forward. But treatments are only as good as the science behind it and even very well researched science is not a finished product. Medicine is practiced, never perfected. To be clear, it has still been a million times faster and more effective than anything I experienced with Adelaide’s epilepsy and multiple other rare diseases. Well-funded research makes life and death differences – as in, I’m going to survive and my daughter didn’t.
So, I am now staring down a bi-lateral mastectomy. The surgeon will take both breasts because I’m not risking going through this shit again and also I’m vain and want my boobs to look somewhat similar after reconstruction. Oh my goodness, is that going to be a wild blog to write – getting breast reconstruction recommendations from different plastic surgeons has been bizarre. And then there is grappling with the emotional implications of losing my breasts, (which I did not think would affect me as much as it is).
As always, I’ll bring you on this ride along with me. I am incredibly grateful that I am going to be ok. That said, this still really fucking sucks.
ID: Kelly in a hospital gurney, wearing a hospital gown and surgical hair net. Miguel is sitting in a chair next to her wearing a blue long sleeved henley. Both are forcing smiles. This picture was taken just before Kelly went into surgery for her lumpectomy in March.
