This piece may sound grim and imply that we are still in the thick of it. We aren’t. We are moving to a place of health and trying not to look over our shoulders too much. My hope is that our process can help someone else, and it also helps me evaluate where I’ve been and where I’m headed. Transitions are hard. Letting go of dynamics that have served you well in the crisis but might be detrimental now that it’s over is not an easy trick. We are all students. I’m learning too.
Analogy has always informed the way I view the world and life with cancer is no different. The best way I can describe how my family lives with cancer is with the analogy of a house. Very early on Garry built us a house of cure. He needed to live in a house of cure, and he quickly laid the foundation for it. BD and I moved right in and that is where we live. Life happens in the house of cure. But within the house we each have a private secret room of our own. I call them the “what if” rooms.
All the hard work happens in our “what if” rooms, but they can be dangerous places. It’s where I have to contemplate the potential of life without Garry. How will I get BD through it? How will I help him with his math homework and teach him to drive, when I’m no good at either? I’m really good at taking care of a little boy, but I don’t know how to raise a man. What will Garry need if his body fails him? If he can’t mind over matter it anymore. Will he ever forgive himself if he reaches the point that his mind doesn’t matter because his body can’t help him. I don’t think he will. I think he will always see it as a failure, as a frailty. How do I support him and bring him peace if he has the impossible task of saying goodbye the to the life he wants with us? These are my “what if’s”. This is the work I do in my “what if” room.
After his diagnosis it took me a solid nine months of focusing on tasks and what Garry and BD would need before it dawned on me that I could lose my best friend. He’s my best friend and he’s fighting the beast that killed my dad. I sit with that in my “what if” room, and I want to vomit. I think about what it means to be a widow. I write his eulogy in my mind and it doesn’t begin to honor him, so I rewrite again and again and I still hate it. I think of ways to keep him alive for BD and our grandchildren, and myself.
Please, don’t misunderstand. I don’t plan on him dying. We live in the house of cure, because we want him to live. The plan is that he lives. Our intention is for him to live, but I have to be prepared for him not to. BD will need me prepared. Garry will need me to be prepared. I can’t afford a blindside, and I know this beast. I’ve watched it kill throughout my hospice career and then personally with my dad. I know this beast. It’s this familiarity that built my “what if” room. Maybe if I didn’t know what we were facing I wouldn’t have such a robust “what if” room. When my dad was sick he liked to say that if he never went to the doctor he’d either be happy or dead. I never liked that philosophy. I don’t care how ugly the truth is. I can’t affect what I don’t know. I’m getting good at doing hard things, but it helps to see them coming.
This is what makes me a paranoid optimist. I am in a constant state of failure planning. I realize that sounds pessimistic, but it’s really not. I have a goal, an outcome, a mission, and failure planning will get me there. There is a lot in life you don’t control. You can’t build your plan on around uncontrollables. A failure plan helps me focus on what I can control when the uncontrollables kick in. I do believe I can affect enough opportunities in life that I have the ability to reach a positive outcome, or not (it’s a choice). It may not be pretty or exactly what I had hoped for, but things can always be awesome again. I do have enough at my disposal to impact how quickly I get back to awesome, and that is why I failure plan, all the time, everyday, because things happen. In many ways my “what if” room is my war room.
BD has a “what if” room as well. I don’t think he spends too much time there, especially not lately. I like to think he invites me in most of the time, but I’m not sure about that. His “what if” room is a place of quiet contemplation where he honors his sadness, but only briefly. I hope. He was six years old when his dad was diagnosed and that summer our dog died of cancer. One Saturday Garry had volunteered to take kids with life limiting illnesses rafting (I love this because he was probably the sickest person on the boat and no one knew it). BD and I were home alone. I was watching TV and he was playing at his Lego table. He suddenly turned to me with eyes full of tears and said “Mommy, if Daddy dies this is how it will always be. It will just be us.” I said, “come here baby” and opened my arms, but he didn’t come. He shook his head and turned back around to his Lego’s. He will sometimes mention how sick daddy is and the “what if’s” that circulate in his head, but he quickly follows it with “I don’t want to talk about this anymore” and moves on. We’ve never made him any promises that we can’t keep. I feel like the best thing I can do is ensure he has the information he needs and the reassurance that dad and I will make sure he is ok. No matter what. That’s our number one job. I think he knows I’m his soft place to fall too. I will catch him. I will carry him. If I can give him anything to take with him into his “what if” room, I hope it’s the knowledge that I will tell him the truth and be a safe place.
Honestly, BD’s “what if” room is an easy place for me to navigate. Experience builds empathy and his “what if” room is not that dissimilar to mine. Additionally, although I was in my thirties when my dad was diagnosed, I do know what it’s like to have a dad with cancer. I know what it’s like to have a dad with very nearly the same cancer. The problem for me was being a hospice nurse with a lot more skepticism and first hand knowledge of disease and death and dying. BD doesn’t have that, and he has a stronger dad fighting the disease. He also has better medical and scientific methods to fight than my dad did. BD’s “what if” room is hopefully the least used one in the house. I hope it’s more of a dusty closet he frequently forgets about. When he runs across it he briefly pops his head in just to see if anything has changed.
My husband has a “what if” room as well. This is the scariest “what if” room. It’s the worst “what if” room. I hope it’s not the most frequently used “what if” room, but I suspect it is. His room is vastly different than ours because his worst case scenario is not the same as ours. In a worst case scenario, we will still be here. He will not. They are both variations of hell, but they are not the same hell. To be honest I try very hard not to consider the “what ifs” from his perspective. It’s too hard. It hurts too much. There are too many things we don’t know about what is beyond us, and there is so much we have planned in this world. Together. With our son. People like to remind me that “our God is a God of restoration”, to which I reply “I want the God of keeping what I have”. It’s true. I don’t want restoration. I want what I have. However, if I’m a widow I will keep much of what I have of what I know and brings me comfort. When you are the one leaving you don’t take anything with you except hopefully the love and wisdom of the life you left. Cancer is already isolating, and I worry about anyone facing these “what ifs” alone. I find there are very few people willing to take a walk on the dark side with me, and there are even fewer probably willing to walk with him.
As spouses we don’t often share our “what ifs” with each other for all the right reasons. We want to protect each other. We know the other person is hurting and we don’t want to burden them with additional pain. It feels loving to keep them out of your “what if” room, but I don’t think it is. It shuts down communication when you need it most. However, like all things under pressure sometimes “what ifs” escape their rooms and explode out on the other person. It’s not fun. It strips you down and makes you vulnerable. It’s incredibly uncomfortable, but it’s also healing and validating and can turn into a place of love and growth.
There are people that I do freely let into my “what ifs”. I’m grateful for those willing to explore the darkness with me. I was surprised by who in my life has been willing and who ran for the hills. I don’t judge them. If you can’t do it, you can’t. You won’t do anyone any favors if you pretend you will be all in and then have to retreat. But if you have capacity for it, and are ever asked to take a stroll in the valley of the shadow of death. I hope you do it. It’s an honor to be invited in someones “what if” room. It’s messy and ugly, but so is life, and if you can be the source of light in a dark place, you should.