Cancer Chronicles VIII: Things They Don’t Tell You

You know how when you’re pregnant for the first time or about to get married and you have no clue what you’re in for? Well-intentioned people try to prepare you but there is really no possible way their advice can prepare you for what is about to happen to you. Before you get married you think it’s going to be all romance and happiness and then you have your first major fight and you think…is this really marriage? Before you have a baby, you think you know what it is to be tired. Then you are two weeks in with a newborn and you realize you’ve never experienced exhaustion like this before. That’s what having cancer is like. People can give you advice all day long, but until you experience it for yourself, you don’t really know what you’re in for.

Just like with marriage and motherhood, there are things that are kept secret for some reason. Like until you’re in the midst of it, you can’t possible handle the truth. Like with marriage how sometimes you can’t stand your spouse but you still love them with all of your heart. Or with raising children, how some days it’s mind-numbingly boring and awful, but you love them anyway. Cancer is like that too.

To most people, losing their hair is a huge deal. I was upset, obviously, because I like my hair, but I wasn’t too worried about it. Guess what? I hate being bald. Sure it gives me an extra 15 minutes in the morning and I don’t have bad hair days, but I miss my hair terribly. They also can’t prepare you for the fact that your head hurts. It’s tender, of course, because you’ve had hair protecting it your whole life. I have to wear a cap when I sleep because laying on it hurts. I have extreme hot flashes all day long and when I have them at night, my head sweats like crazy and then I take off my cap and then I can’t sleep because it hurts to lay on my head. They tell you that you will lose your hair but it’s a totally different experience when you wake up one day and you have NO hair anywhere. Anywhere. It’s strange and you feel like an alien freak. At least I do.

They tell you you’ll be nauseous but it’s like nothing I’ve ever experienced. It’s nausea 24/7. But there’s nothing in your stomach. So it’s like that feeling that you need to throw up, and you’d feel so much better if you’d throw up, but you can’t. The anti-nausea medicine gives me a headache so usually I have to decide between two evils. You’re so achy it hurts to move. And you’re more tired than you’ve ever been in your life. I hardly ever took naps before. Now I need one every day. Need one. Of course I’m not sleeping at night because of a.) nausea b.) headache c.) hot flashes d.) acid reflux and heartburn so of course I need a nap. Oh and I have no white blood cells. That makes a person a little tired.

The one week I showed up and couldn’t get my chemo because of my white blood cell count really threw me for a loop. That’s another thing they can’t prepare you for. Now, every week, in addition to just worrying about getting through chemo, you’re worried that you won’t get your chemo and be a week behind in your treatment schedule. Because trust me, you don’t want to get behind your schedule. It’s like your pregnancy due date. You want that baby out by that date! You want your chemo over on the day it’s supposed to be over.

Mom and others might want to stop reading now because I’m going to talk about sex. That’s one major thing they can’t prepare you for. Your loss of desire for sex. It’s not just me either. Other friends have confirmed the same feeling. Of course you don’t feel well, so sex is never at the top of the list when you’re not feeling good. But the desire is totally gone. It’s an awful feeling that I’ve never experienced before. I miss the intimacy with my husband and I know he does too. It’s like all of sudden your sense of hunger or tiredness is gone. It’s just a weird unsettling feeling.

Cancer is hard on a marriage just like any other major traumatic event. Even a strong marriage will be tested by cancer. The person with cancer feels awful all the time, can’t do as much around the house and feels so much guilt. The caretaker is tired of watching their spouse feel bad, tired of picking up the slack and just wants their spouse to be back to normal. It’s tough. We’re managing and, thanks to tons of help from family and friends, we’re surviving, but it’s not easy.

I’m not saying all of this to complain. Although, trust me, I feel allowed to complain. I’m saying this because maybe someone who was recently diagnosed can maybe prepare themselves or maybe someone who is currently going through it won’t feel so alone. Because that’s the other thing they can’t prepare you for. How terribly lonely it feels to have cancer. Even if you find a friend or supporter who is going through or has gone through what you are going through, it’s not you. I know I feel very alone. So if I can help one person not feel so alone, I will consider myself lucky and helpful.