by Belle Piazza
I always wondered how a cancer patient comes to the conclusion that they’re ready to decline all further treatment and let the disease take its course. I have a husband and two beautiful children who love me. I have an idyllic life living here in the beautiful northwest. I am surrounded by friends who love me – both near and far. So how – HOW – do you say enough is enough? I’m done. I’m ready to go.
For me this decision was reached at 2 a.m. on a Thursday morning, lying in bed, silently crying, with back and chest pain that meds couldn’t control. I had a thoracentesis earlier in the week and despite my initial impression that this was a minor procedure, it was pretty major for me. Between the side effects I was dealing with from the clinical trial drug and now the aftermath of the thoracentesis, I could barely make it from my bed to the recliner in the living room, where I sat all day watching T.V. and playing on my I-Pad. I wasn’t driving myself anywhere and I had friends taking my kids to and from school and running errands for me. My husband was out of town on business. Despite all the support I was receiving, I felt so alone.
And so it was that long, painful night that I finally let down my guard. I gave myself permission to consider a decision that up until that point I forbid my mind to ponder. I had blocked this thought from my mind the way you’d set up parental controls on your kids T.V. and electronic devices. I just wouldn’t go there. Until that night, when I did. I put others thoughts and opinions off to the side and thought only of myself. What did I want? What was I gaining from living like this? At what point does a person say “enough is enough – I’m done”. And after considering my situation in great length, I decided, at maybe 3 a.m. that morning, that I was done.
Later that morning I got the kids off to school, thanks again to a close friend of mine. I dragged myself out of bed and into the living room where I’d spend the next 12-14 hours sitting in my recliner, thinking about the night before and watching Dr. Phil reruns. I called my friend Carol and asked her if she could come over – I needed to talk. Carol showed up shortly after our phone call and I proceeded to tell her about my decision and how I had come to it. I cried a lot, she cried a little. Carol is a strong woman and I knew I could talk to her about this and I knew she’d support me and understand me and hold me when I cried. Just hearing my voice out loud and receiving Carol’s assurance that it was okay made me feel better.
Later that day I told my kids. I didn’t go into great length. I just told them that I was stopping my participation in the clinical trial and that I wasn’t going to do any more chemo. They understood, the way a 12 and 14-year-old child could understand. We all cried and held each other. I told them this wouldn’t change anything immediately. I told them I might have months, I might have years – we just don’t know. But what I do know is I can’t go on like this. My quality of life was terrible – and I didn’t want to live like this anymore.
My husband got home later that week and I told him. He was angry that I had told the kids without him and that we should have talked about it first. I was angry that he didn’t understand what I was going through. There’s no manual on how to handle these things. I told him I feel as if I’m left to figure all of this out on my own – and that he picks and chooses when to be involved. He was angry that I keep things to myself and don’t involve him. He’s right about that one. We talked and cried and got past it. He talked to the kids and assured them that he would be there to take care of them and that as a family we’ll get through it.
It’s been several weeks and life at home is back to normal – or as normal as things ever are when one parent has a terminal disease. I told my oncologist I wanted to stop treatment but he said since it was the holidays and I was suffering so much from the clinical trial drug that now was not the time to make big decisions like that. He made an appointment for me to see him the second week of January and said we’d talk about it more at that time.
I told those friends who are closest to me so they could tell their children what my kids are going through, and be there to support them. Everyone I told about my decision has surrounded me with love and support in whatever ways they can. I am so blessed to have such caring friends and family in my life.
I’m writing this blog because I know there are others like me trying to figure out when to have these thoughts – these conversations with ourselves, asking when enough is enough. It takes great strength and courage to let down that wall and allow yourself to think about such things. I know this, but I don’t feel strong or courageous. I’m mostly just scared. Quality of life is of the utmost importance to me. I don’t want to live in chronic pain. I don’t want to be a vegetable – moving from bed to recliner and back again. I don’t want to watch others live my life around me – doing all the things I’m unable to do. So how do I exit gracefully with as minimal pain to my friends and family as possible? I can’t say for sure – I’m still figuring this all out. There is no manual – no “Dying for Dummies”.
The first step is to allow yourself to have the conversation – either with yourself alone, as I did, or with your spouse or a close friend. Assure yourself it’s okay to be selfish in this instance. No one else is living the life you are, so no one else can determine when enough is enough. Only you can make this decision. You may come to this decision and then change your mind again – and maybe again. Whatever course you take, whatever decisions you make, remember to show as much love for yourself as you show to those around you. Cancer requires us to make many difficult decisions and declining treatment may be the most difficult of all – since only you can make it.