Sunday, October 30, 2011

4, 3, 2, 1...

Four, three, two, one
Earth below us drifting, falling
Floating weightless, calling, calling home...

I'm trying not to jinx myself. Trying to stay healthy. Trying to stay focused because as of Friday, I have only four more treatments left.

This is huge. Huge. HUGE.

So, I'm not writing any more about it here, but this song has been zipping through my brain on a daily basis.

Love to you all.

Major Tom

Sunday, October 23, 2011

What Comes Next

I have been thinking a lot about what comes next. Obsessing, a little. Five weeks left of treatment.

Five more times in the chair.

I keep envisioning that last day. What will it be like? Will I cry when it's over? Will I laugh or clap my hands or do a little dance? I don't think I can do any of those things as there are people far sicker than I sharing that space, sitting in their own chairs, clinging to hope and working through whatever musters them to be there. That would be rude, wouldn't it, to celebrate end of this leg of the journey when others have so much more to face? But I can't imagine how I will feel at the end of this very long run. When I think of it, tears spring to my eyes.

It will have been twenty four weeks that I will have been in chemotherapy treatment. Nearly six months of my life. Nearly a marathon. In some ways I feel like I am going to be the guy whose body shuts down on the last leg, cratering under the exhaustion and stress from the experience. In others, I feel like I will finish at the end with my chest out, arms held high. Who is to know until I get there. I'm not tempting the Fates again with too much advanced thinking.

But this leads me to the next thing (ah HA FATES). What comes next? How will I know if I have cancer again? I asked my nurse practitioner the other day and she said "well, we look for signs and symptoms." Signs and symptoms? That's all? We get to wait until things are far enough along that I really start to notice that something is up? What about tests? What about some sort of imaging? Wait and see? What the hell?

A few weeks ago, Ava and I were standing in a local bagel shop behind another woman and her daughter. This gal had the telltale bald head so I looked over at Ava and said "See, this lady has no hair just like mom!" The woman and I struck up a conversation and she asked "Is this your first time with breast cancer?" I must have looked a little shocked as I said "uh, my first" because she said, kind of softly, "oh, it's my second. I mean, I had a good ten years in between..." and her voice kind of trailed off. I looked from her beautiful daughter who must have been only 18 to my beautiful daughter who would only be 15 if I had ten years and my blood ran cold.

Ten years.

Being this close to the end also makes me realize that I don't know if I can go through this again. I know I will if I have to because I love my children and my husband and my people and don't want to leave them, but the thought of going through this again just is kind of beyond me.

I know it's hard for my friends who are surviving breast cancer to read this blog because it brings back too much stuff. I have an acquaintance on FB who is struggling through recurrence now. This is the part that I didn't want to think about. This is the part, near enough but far enough away, that scares me.

Ten years.

If I could be so lucky? Is that the way to be thinking about this?

Maybe it will mean I will live my life better, differently. Maybe I will make better choices with my time, think about the future in shorter chunks, not waste energy on situations and irritants that do nothing to fill my bucket. Maybe thinking in terms of ten years would be a blessing.

But ten years is not enough time to do the things I want to do with my life. I have plans, people. I have things to see, I have trips to take, I have communities to build, I have people to love, I have kids to marry off, I have grand babies to hold, I have a retirement home in Seattle to buy...I have plans.

So what comes next? What do you see for me?

Friday, October 14, 2011


My bonus mother-in-law Ginny had that Ginny look on her face...the one she gets when she's got something to tell you or share with you. "I have something for you," she said as she slid a black bag across the table. We were sitting in the sunshine, drinking wine and enjoying the afternoon on Federal Hill. "Open it and tell me what you think."

I opened the bag and the box inside to reveal a thin wire bracelet bearing a medallion with a breast cancer ribbon etched on to it. When I looked up, she held up her wrist which bore the same bracelet. "I bought them for us all," she said. "Pat, me, Maryann and Lynne, Katie, Alyssa, Jenn...we all have them. We all just feel really helpless because we aren't there with you during all of this. This way we are connected to you every day and you know that we are with you too." Katie held her's up, as did Jenn and something passed between all of us that remains deep in my heart.

So today, hundreds of miles away, I'm thinking of those special women and how incredibly lucky I am to have them in my life. I'm thinking of how my life is enriched by the time I spend with this family who I was so lucky to gain as part of the excellent husband deal I got. Today I am feeling really lucky.

Saturday, October 1, 2011

Navigating Who I Am (in this space)

Little hands crept around the door frame. "Mama?" her voice called tentatively. "Can I ask you something?" I was in the shower and panicked for a moment. Ever since my first surgery, we'd made an agreement with the kids that time in the shower and getting dressed time were "personal time". "Dad doesn't watch Grandma Pat get dressed. There is a time when you get old enough that privacy becomes important," was my reasoning to them, but it was 100% that I didn't want the children to see what had become of my scarred and destroyed body. I thought it would scare them. Because, in all honesty, it still scares me.

But here she was, my little girl, needing something.  "Come in, sweet girl," I called. She came in, fully in the middle of her thoughts, and stopped. She looked. She looked puzzled. Then, taking in what she saw in this new landscape of her mother's body, she started in with her question. I smiled, she smiled. It was ok.

Dealing with the reality of what happens to your body during breast cancer treatment is one of the most difficult aspects of living through this journey. You feel sick from the treatments, you fear death, you fear the unknown, you have to work through all sort of emotional issues with friends and loved ones about your illness but one of the hardest things, every day, is to deal with the body that you inhabit. For me, that is feeling stripped down, genderless, alien myself. I remember seeing a picture of Ralph Fiennes as Voldemort in the last few Harry Potter movies and being horrified because I identified so strongly with his bald, pale, almost genderless presence. That's the shit side of what body image in this space does to you. I've mourned that in previous posts, but it's something that is always with me.

Yesterday, a friend sent me an article that spoke so clearly about what its like to feel the tug and pull of these body changes. Even if you are right with it (which, obviously, I am SO not), there are others whose opinion, feelings and thoughts you have to navigate. Children, partners,'s overwhelming. My means of dealing with it have been to turn inward and just try to put my head down and get through it, figuring that at some point the new normal will kick in (post-chemo, new surgeries, weight loss) and I will be able to deal, or at least deal with what is permanent. But its hard and lonely working that way, even though daily I hear from friends that I look beautiful. It's a mind mess I that I am still working to resolve.

So this article and the Scar Project in general has done a lot for me. These are *beautiful* women, lovingly photographed by a fashion photographer. Some look amazingly beautiful, some are just who they are. I remember seeing the photo of the pregnant woman on a poster in Cincinnati and being shocked and horrified before I myself was a double mastectomy survivor.

Now, I want others to see so that we can make this all more normal. It's there and it's the truth. And there is no shame. And there can be beauty. But shit, it's hard.

Article here:

The Scar Project website here: