When you are married to a cancer patient you go through as many changes, at least mentally, as the patient herself. Neither of you invited cancer into your life, yet you are subject to all of the fear, worry, and sleeplessness as your partner: with a little guilt thrown in for good measure. There are a lot of us out there, a fairly silent minority of people who find kindred spirits in other cancer spouses. We are on a journey with our mates and still trying to move forward with our own lives. It’s a tightrope. You still need to work, raise your kids, have a little fun, and take care of yourself; knowing all the while that this is all subtext.
You have an unwanted visitor in your house and it won’t leave.
I’m not trying to soft brag here, or look for sympathy, or even get attention. I’m just saying that I haven’t run into a lot of people who understand our role as well as someone who is running, or has run, a parallel journey and I’d like to try to express it for you. Maybe someday it will help you, although I wouldn’t wish this on anyone. The gamut of emotions is pretty much as you’d expect. We marry someone with words that go something like, “for better or worse, for richer or poorer, in sickness and in health,” and you are young, in love, optimistic, and filled with hope and promise. The truth is, if you stay married long enough you experience all of these things. You deal with them as they come along. The sickness one is the one you think about the least, because, hell, you are young, and in love, and optimistic, and filled with hope. Then cancer kicks in the door and begins its occupation.
Unless you are a saint, your first emotion is one of self-preservation, I think humans are wired that way. “Okay, what do I do if I lose her?” That emotion doesn’t last long, if you have any love for your spouse at all you realize that this is not the time for selfishness and you’d better rise up, ready or not. Not everyone gets to this second step, I’ve had a number of people tell me stories about husbands who have headed for the hills when their wife’s diagnosis came down. (While trying not to judge; I almost always say about them,”If you ever even driven past a church you should know that’s the wrong way to go.”)
So; we take a breath and proceed down the path of learning what is required of us. Mostly, it involves letting go of any sense of control. You are not the person who decides what happens next: you have been superseded by doctors, technicians, treatment schedules, insurance company clerks, and cancer itself. You read everything in sight but try not to learn so much that you think you are smarter than the doctors (because you aren’t). You pay attention to your spouse in ways that you never did before; you learn to recognize the good coughs from the bad ones, the times she is silently in pain from the times she is actually sleeping, the times when she wants to push herself further than you know she needs to. You learn that sometimes she wants to do more for you, just you, but she just can’t, and you love her more for it. You learn that honest talks are one thing, but hope and love are always the best resolution to those talks. You come to appreciate the beauty of bald women and the knowing look that passes from one cancer victim to another when complete strangers see each other in public: its a sisterhood. (I can’t tell you how many hugs Teresa has gotten from people who don’t know her; its a beautiful combination of awkwardness and ecstasy for the by-standing spouse.)
We try to be a combination of patient advocate, cheerleader, nurse, guardian, chauffeur, and lover. Through it all you come to understand that none of us is promised tomorrow and we might as well enjoy everyday. In that small sense, cancer is a gift, obtaining a certain level of consciousness and awareness is possible once you face fear and tell it to back the F. off. You learn to be more patient with some people, especially the ones who would rather talk about anything other than your wife’s health, and you learn that there are times for righteous anger and taking action. You know the difference between standing up for yourself and the times when you have to sit back and observe, you leap into action when you find battles that are worth fighting; whether they are directly related to cancer or not.
We aren’t alone, our kids are even more helpless than we sometimes feel and you have to help each of them find a role in the care giving process while moving on with their own hopes and dreams. Our extended families want to help, as do our friends, but they don’t know exactly what to do. They have their own lives yet they think of you often. In my case, I’ve found that long, physically punishing bike rides are my best coping mechanism and I appreciate my riding buddies and anyone who wants to share a drink and a laugh with me otherwise. Laughter, by the way, is the absolute best thing, humor is a powerful form of love, but you are a little more sensitive to some forms of humor than you used to be.
In the end, the lesson you learn is that acceptance is much more powerful than denial, and the question, “What’s next?” is the first step in moving forward and moving forward is better than not moving at all. At least so far. My wife, if you are wondering, is expected to live a long time (with treatments every three weeks for the foreseeable future.) We met a remarkable couple a few weeks ago and the wife has been on the same treatment regimen as Teresa for 7 years and is going strong. That’s led us to the rather ironic conclusion that we might go through all of this and then die together in a horrible hot air balloon crash or some other death totally unrelated to cancer: so we might as well live everyday as if it is our last and love each other like tomorrow may never come. I will go on knowing that I have done everything I could to make my wife’s life as happy and meaningful as I could, no matter what happens, and that makes looking in the mirror easier. To be safe, however, I’m NOT booking any hot air balloon excursions.
If you are ever faced with this journey, I wish you the inner peace that we have found, I hope you understand that anger, denial and surrender may all have their place in the process, but faith, hope and love are your best tools. Don’t be afraid to ask for help either: many people would love to help you if you would only tell them specifically what you need; this isn’t time to expect people to anticipate what you might want; they aren’t on your journey, they may not know what to do. Whether it is asking for a meal to be prepared, a ride to be given, or a bottle of wine to be shared, I bet you’ll find someone who is eager to do what they can. People have a knack of rising up. You will too!