My great uncle Joe’s testicles…

I’ve been thinking about why I post to this site.

I don’t have cancer. I don’t live with Andrea and Kelly and the kids. And I’m not that different from many of Andrea’s other friends.

But, like Andrea, I really want to write about this experience. Kelly’s post made me realize this. He’s having a rough time, and I don’t really know how he does it. I’d be hard pressed if I had an eight month old. I’d be struggling if I were coparenting five kids that weren’t “mine”. I’d be out of my mind if someone I loved as much as Kelly loves Andrea were suffering and I couldn’t do anything about it. And he’s got all of this. I hope you know, Kelly, how much I love and respect you.

Andrea’s living with cancer, but we’re all having to make sense of what she’s going through and how it affects us.

Last week, when Jesse and Don and I were with Andrea at chemo, her “chemo buddy” Christine was there. There’s one thing that they were supporting each other with and it’s a story that I’ve been thinking about all week. It gets at the heart of why I feel the need to write.

They’ve both had the experience of people telling them things like, “I have a sister who had cancer and she beat it.” Or, “My neighbor’s wife had cancer real bad and these miracle drugs saved her.” Or, “My great uncle Joe’s testicles were the size of grapefruits from tumors. He’s all better now. He’s 105 and training for a triathalon.”

I said things like this to Andrea in the first few weeks. I was worried that she didn’t want to live and that it would impact her recovery. I was in denial and was trying to make things alright. But Andrea, like her buddy Christine, has the kind of cancer you don’t just recover from. Our best hope is that chemo and surgery and radiation and more chemo and more chemo and more chemo will help them to live the lives that they want to live for as long as possible. As Andrea has said, there’s no “remission” for this cancer, there’s only “no evidence of disease”. And it doesn’t help me live alongside Andrea if I’m not accepting this.

That’s a lot to deal with.

It’s made me think about survival versus living. We’ve focused so much – as a culture – on “cancer survivors” that maybe this is why we don’t see people going through chemo. Maybe this is why IBC isn’t discussed as often. We’re still forcing people who are living with cancer into closets. But Andrea has balls the size of Uncle Joe’s and won’t be pushed into a closet.

Like her, I don’t want to just survive this. Yeah, we’ll all get through it. But there’s so much more than that possible. We can live it. And, in the living, carve out some space for one another to figure this out. Carve out some space to support one another. Maybe even carve out some space to make the things that all of us real people go through normal.

This is why I write. It reminds me. And it empowers me. I hope it empowers you. Kurt Vonnegut once said that he wrote to let you know you’re not alone. Knowing his work, I think he also appreciated the company. I know I do, so, please, let’s not go through this alone.

I hope to see many of you this Sunday at the benefit. We need a celebration together. And what better thing to celebrate than Andrea living her life?

2 Responses to “My great uncle Joe’s testicles…”

  1. Siobhan says:

    Very well said.

  2. Renee Khan says:

    Very well said indeed. I mentioned in an earlier reply that I also have IBC. Not often do you come across someone who really GETS IT. But it sure seems that you get it now, even though you may not have in the beginning. I am glad you stuck around and invested yourself in the experience to see what it must be like for Andrea. People care but are usually so self-absorbed that they care only until they get bored. Nice writing.

    Renee Khan