I took this picture on my weekend away. It was a few weeks ago and two whole nights by myself were glorious. Glorious, I tell you.
I wrote and I wrote. I guess I just had to be really still for the words to come. They came in droves.
I had a room right on the lake and I listened to the waves hit the shore. Water is so healing. I breathed in the trees and the sunsets.
At that point, I was just coming out of a fog. (I still am in some ways.) I had started to worry that I hadn’t had a big cry in a while and was afraid for what that meant. I worried that I had been stuffing my feelings down more than I realized. I really was in survival mode for the past five months. It was necessary and we did survive. And, in fact, I think the girls and I did more than just survive. I keep using the hashtag #futuresurvivor on Instagram. I suppose I’m a #currentsurvivor too.
One of the nights, I watched a Ken Burns documentary on cancer. (It’s excellent, as you would expect from Ken Burns.) I guess it was my way of trying to force the emotional release. It didn’t really do that for me, but it did something else much deeper: It helped me feel much more connected to this experience of cancer and to the millions of people who have been diagnosed with cancer. Some stories have great endings, with amazing breakthroughs in treatment. And also far too many of the stories have tragic endings.
But I’m no longer afraid to hear those stories. I can bear witness to those stories in a different way. Just like my conversations with fellow cancer survivors feel different on a cellular level, it feels like a sacred task for me to show up to hear those stories. And see parts of my own story in theirs.
The big cry came a week or so later. The timing on that can’t be rushed either, apparently. All things in due time.
So, tomorrow (Tuesday) is the surgery.
The plan all along was to have a double mastectomy, regardless of how well the chemo worked. There were “satellite spots” in the original MRI and short of doing a biopsy on every single one (nearly impossible) there’s no way to know whether some/any/none were cancerous. So, the surgeon recommended a unilateral (single) mastectomy.
I’m opting for a double mastectomy. Even though, it doesn’t statistically reduce my risk of recurrence, it was a pretty clear choice for me from the beginning. If I stuck with the single mastectomy, I would have either an ultrasound or an MRI every six months for the rest of my life on the side that remained. The tests themselves are no big deal (remember, I know how to do my own nose piercing now?) but waiting for the results is torture since my diagnosis. I don’t want to live with that every six months for the rest of my life. I still hold out hope that there will be a day in which cancer, treating it, or fighting it, is not top of mind all the time.
But, here’s the part where the chemo working really well becomes really significant: we know that the cancer spread to one of my lymph nodes. Had I had surgery first, they would have had to take all the lymph nodes out on that side. Now, because the chemo appears to have worked really well, they will do a biopsy on that lymph node in the operating room. If the pathology report is clear, the surgeon will only have to take a few lymph nodes from that side. So, if you think of me tomorrow, send good thoughts for clear results with the lymph nodes.
My treatment plan involves radiation beginning about 4-6 weeks after surgery, assuming the healing goes well. Because of this, I won’t be able to have reconstruction done immediately. They will put expanders in at the time of surgery, which will be filled over time. (As much as possible before radiation begins.) Radiation can do a lot of damage to the tissue in that area, so the final reconstruction surgery will happen about six months after radiation is complete.
I’m still feeling pretty ambivalent about the surgery. It is what is needed to ultimately give me the best long-term survival rate. A necessary evil, if you will. But I’m still also mourning a lot of what I will lose: I will likely lose most feeling in my chest, probably forever. I’m thinking a lot about what it will feel like to have foreign objects attached to me forever. Damn, I don’t even like having the port in because it feels like a foreign object.
Will hugs ever feel the same again? Probably not. And that makes me sad.
I’m also ready to do this and get to the healing part. I’m listening to the stories of my friends who have been through this before. I’m assured that the grieving will pass. I trust that it will.
Last night a group of my closest family and friends gathered in what we called it my Boob Voyage. It was going to be my farewell party to my boobs. What it ended up being was a group of amazing women showing up for me in the most amazing way. They filled me up with stories and laughter and it was exactly what I needed.
I’m convinced that this whole life experience is about nothing more or less than how we show up for each other.
Words aren’t adequate to express my gratitude for how many people - that I know and that I don’t - who are thinking about me, praying for me, sending their healing thoughts. It is truly overwhelming. Thank you so much. Please continue to do so.
Sean will post an update here after the surgery.
Love you all. Onward.
