Poetic License

This weekend I need to do a hard thing. I need to complete an advanced directive and living will so that I can make the decisions now rather than leave them for my loved ones later. Most likely it would be Sean making all the decisions, and I don’t want to leave him in that predicament of what to do in case I crash. This isn’t what I want to be thinking about, but it’s the most unselfish thing you can do in the situation.

Monday I’ll be having more tests, the last ones before I meet with my oncologist again and get a treatment plan. I’ve been meaning to call this other doctor for a second opinion, but I keep waiting until all the testing is done. Should I wait? Should I call him Monday, between tests? My insurance company wouldn’t approve a PET scan. Instead I’m being sent for a CT of my entire trunk and a bone scan. Thank goodness I have my port (and some lidocaine cream to apply 45 minutes before the poke) or else I’d have even more bruises after the tests are done. I’m trying hard to be brave, but always in the back of my mind is the fact that I have cancer–and so many of my relatives have died of the disease that it’s impossible not to let my mind go there. So yeah, advanced directive time.

When my mom was dying, she had no such document. We had to work it out with the doctors what kind of measures we should take in light of her condition. Most of us (her children) were there with her, but it was easily the toughest decision we ever had to make. I don’t want Sean to be put in that position. No one should have to die the way Mom did. We did our best to make sure she got morphine at the least sign of pain. But it was a lingering death like nothing I’ve ever seen. She suffered. We suffered. In the end, she waited until all of us had gone to the hotel to get some sleep except for my older sister. It’s like she wanted to spare us or wanted to spend her last moments with just our sister. Whatever her reasons, she hung on way past the point the doctors thought she would. I pray I don’t linger that way.

I have lots of loose ends in my life. The last 11 years has been brutal. I turn my face away from things that are hard or unpleasant, things that I can let go. I often isolate because of the depression and because of my other health conditions. Chiari malformation can land me in bed for a day or so with unrelenting head pain. I have a serious bladder issue that means every so often I’m doubled over in pain from an infection (which happened this week). My life is a series of trips to CVS. I never thought it would be this way.

Before I lost my daughter, I was a hard charger, driven. I was on my way up the corporate ladder. I published two books and a couple of articles. I got my masters degree (though I finished it after she died). I wrote a portion of a textbook with my project group. I heard that one of my networking books was translated and used as a textbook in Europe. But grief and illness can derail you. From the outside, maybe you can’t tell how hard I work to stay somewhat positive, but I do work at it. This latest challenge is a tough one, though. I can’t write my way out of it. I can’t tough it into submission.

So I will tie up as many loose ends as I can. I’ll try to be brave as they pour toxins into my body. I’ll try to stay strong when I’m dealing with the side effects. I’ll try to let people help me when I need it. And I’ll try to make those tough decisions so that my son (or my sister) don’t have to.

As helpless as it feels to have cancer, it’s just as tough to watch someone you love battle cancer. I know that. So I’ll do this hard thing.

And I’m going to be honest on this blog. No sugar-coating. I hope you’ll stick with me and cheer me on from the sidelines. I’m going to need that.

Namaste, J