When Ted was first diagnosed, I told everyone we didn’t want any help until Ted started treatment so things would stay normal for the kids. When the doctor told us, “It was everywhere,” I figured things would move quickly. It was two months between diagnosis, making the decision, and actual surgery for Ted. We were so underwater for those two months. There was not one thing normal about those two months. It was so, so bad. Granted we had a one-year-old and a three-year-old, so we were underwater on the best of days but, boy, it was rough. We could barely function with the stress, grief, and anxiety. So, this time I asked for support when I’m less underwater and it feels really good to have. So very helpful, even decadent and lovely to have. Thank you.
Whew. I woke up so sad this morning. My body really wants to run away. Like escape reality. I guess that’s normal, right? Makes sense to grieve the parts of my body I will no longer have. I think so. And it makes sense to be scared even when I know it will all be okay. Cause it will. It will all be okay.
A week from now I will be in the hospital recovering from surgery. (I want to add, “with a butt in my gut”) 😉 It seems to me surgery is a very vulnerable place to be. Knocked out in a room with a bunch of strangers who are there to remove a pretty important part of my human anatomy. Sounds like vulnerability to me. Ugh. Maybe I should change that narrative. Does anyone have a different one I can borrow?
Do you know, and I kind of doubt you do, yesterday March 9th, is the “birthday” of Barbie? (She’s only 61 yrs!). And did you also NOT know people who have APR surgery (at least some people) refer to the result of it as “Barbie Butt”? Or “Ken’s Butt”. JaysusMaryandJoseph. That makes me so very uncomfortable. I mean, really? It’s accurate but… There was a time in life when looking like Barbie was a subconscious aspiration, but I don’t think it ever included her lack of butt. (And that waistline had to require some organ removal.)
Some of you have asked what’s involved in the surgery. In an Abdominoperineal Resection (APR) surgery they will remove my lower colon (hope only for the sigmoid colon), my rectum, and anal canal. Yep. That is everything. Yes. They will sew “me” up. Barbie Butt indeed. Surgery will last four to six hours assuming all things go as planned. They do it robotically unless something happens, like they slice my bladder by accident, in which case they make a long incision, and then blah blah blah. Recovery is somewhere between 2 and 12 weeks. No, it’s really not 2 weeks. It’s a long-assless recovery. It’s major surgery. It’s going to take some time. I’m told I shouldn’t sit for six weeks. (Holy wow!) That is a long time to not sit. I hope I can go camping this summer.
Surgery is on Monday, starting at about 11:10 AM PST. I’m guessing the surgeon is going to knock out a bunch of colonscopies in the morning and then end the day with me. That’s how I’ve scheduled his day.
Man, I don’t want to do this. Audrey reminded me this morning, in her most gentle, wise, and loving way, not only how much this sucks, but also how grateful we are to have this option. So, I am remembering it’s my best worse option. I am remembering that having an ostomy is not really a big deal, once I make the transition. I hope I don’t cry and complain too much. I likely will. That’s okay. My family is understanding and prepared. And my kids are amazing humans. Both have made themselves emotionally and physically available for me with such loving generosity and kindness. Sort of makes me excited for when Ted and I are old and grayer and living with them. In the addition they built for us. The one with a VIEW. We’re going to have a sweet set up, Ted. I’m sure.
I learned a couple of days ago that an old friend died of cancer last week. He was the kind of guy that you wanted as a best friend. Someone you really wouldn’t mind seeing every day. You know those people. They are rare. He had this way of making you feel safe. And seen. And understood. (Which is what all of us want. Seriously, do that for your kids and they’ll be awesome people.) He was a truly kind, kind person. I am so sorry and saddened by this loss. For his family, his kids, his friends. For humanity. Cause he was a good man.
Man, I feel like I can touch his grief but I can’t feel it exactly. This reminds me that the amount of grief and sadness and fear that comes with looking right at my death is so profound that it’s impossible to hold. My remembering self cannot conjure that up again. It’s too much for this human brain. If I could hold it, I think there are things I would change in my life. I know people have this same cancer experience and then make big (or small) changes in their lives. So, either those people can actually remember and feel that great depth of despair again, and make changes, or feeling it one time was enough. I’m curious to see if twice is enough for me, FFS.
In the past six months I’ve had several people very close to me diagnosed with cancer. Some with horrible cancers. It’s been a doozy of a year in my world. And the pan-damn-demic is only part of it. Although it sure makes having cancer a lot harder. Fuck cancer. Really. Fuck cancer. And all the stupid things that give us cancer.
I stood in the shower today and silently screamed “fuck” about 1,000 million times. I’ve taken a few pictures of my abdomen, which is odd, I know. My body won’t be this way again. And, I’m weird. Tears stream down my face at random times of the day and night. I’m occasionally in a complete state of disbelief. And sometimes so mad at the stupid virus that gave me this fucking teeny tiny tumor that requires the removal of such important and integral parts of my body. And sometimes I’m so disappointed that there isn’t a better worse option. Deep breaths help. Distraction helps a bit but my mind drifts now, too. As the day gets closer it’s harder to stay distracted. And it’s harder to sleep because I want the days to stretch out as long as possible. I want surgery to be as far away as possible. But I also want it over.
I’m sad about this change for my body. I really do use it a lot. I lay on the floor at night and stretch and contort. I stand in the kitchen in the morning and do “yoga”. I sometimes dance before the house is awake. I move and kick and stretch. I stand on my hands a lot. I lift weights. I regularly walk 10 miles a day. (Damn dogs.) FUCK! (Sorry. Do I swear too much?)
And still. I’m lucky. I know this. I know how lucky I am to have this choice. To have my body change this way. To have this option. To be able to create a new normal. To able to struggle and cry. To be able to love/hate having a colostomy. To be able to feel anger and gratitude. To feel joy and grief and sorrow. I’m so lucky to be able to figure out this new way of living. Lucky with a heaping lifelong dose of privilege.