Living with Leukemia part 8: The Ugly Truth

The thing about cancer is that it completely changes your life, whether you’re the one to have it or someone close to you. What’s surprising is the extent to which it changes you, I can honestly say that I’m a completely different person now than I was two years ago, and I have no idea whether I will ever go back to being the person that I was then. Probably not. Another surprising thing is that, at least in my case, most of the changes aren’t positive, I truly wish I hadn’t become this way.

I used to be pretty judgmental, motherhood took care of some of that attitude, and then cancer took care of the rest, so you won’t find me judging as readily anymore. At the beginning of this whole cancer debacle I was talking to my therapist and telling her I was upset with myself cause I felt like I wasn’t doing enough, and that it bothered me how often people would come up to me and say I was so strong, and I was dealing with this so well and what with a new baby and all, and my answer was always, well, what the hell else am I supposed to do? And my therapist said that I’d be surprised at how many people leave when they find themselves in my situation. 

Obviously, my initial reaction was disbelief, I mean, really leaving a loved one who’s just been diagnosed with leukemia? Who does that? What sort of horrible human being abandons another in a time of need? And then you start hearing things, because you start paying attention, and you realized that you’re surrounded by “people who leave”, the husband who runs off never to be heard from again when his wife is diagnosed with breast cancer, the girlfriend who breaks off the engagement… there are so many, more than one can even imagine. I was appalled, who does such a horrible thing, I’d think, why would you react like that, how can you leave?

They say you shouldn’t judge until you’ve walked a mile in another man’s shoes, right? Well, now I’ve walked that mile, and I’m not so quick to judge. Cancer changes things, a lot. It’s a long, sad and sorry process with no guarantee of anything at the end. There are days, there are many days, when I wish I could be one of those people who leave. Have I shocked you?

Cancer changes things. I love my husband, I always will, he’s the father of my children, but we’re barely husband and wife anymore. We live our lives beside each other, but not together anymore, and we have no energy and no hope to look to the future anymore. So, yeah, the truth is sometimes I wish I could leave because I’ve realized that leaving would be so much easier. 

A few weeks ago, at my Mom’s wedding, one of my cousins who I hadn’t seen in years, said to me that I was the column of the family, always taking care of things, always doing what I’m supposed to. How sad is that? But, uncomfortably true. I need to take care of things, make them work, make them right. I’m not a person who leaves, but god do I wish I was.

I got an email a few weeks ago from a girl who reads this blog, I have yet to find the words to answer her. She finds herself in a situation similar to mine, which in a way was comforting to me because it made me feel much less lonely; now I’m not going to get all up in her business here because it’s not my place, but her email got me thinking (among many, many things) this: her boyfriend has leukemia with a very similar path to my husband’s but the thing is, they hadn’t been together very long when this all started for them, they’d only recently moved in together… and lately all I want to say to her with all the strength in my body is get out, get out while you still can. I can’t even imagine facing this whole, long, terrible ordeal without the strength of years together to help you through. I’m barely making it and I’ve been with the husband for twelve years, we have two kids, we stood up in front of church and state and swore to stay together in sickness and in health. And most of the time I feel like I’m a strong wind away from it all falling apart. 

But the truth is, I don’t think she’s one of the people who leave either.

I realize there’s no limitation period for leaving, one can up and go at any time, but there are people who can and people who can’t. Sometimes I try and look to the future and it depresses me to no end, because this illness is one step forward two steps back the whole way. Last year I used to think in terms of when the husband gets better, when we’ll get back to normal, when we’ll be able to do this or that, this year, after the second transplant, I cautiously thought if we get back to normal, but now, now I have no hope. Nothing specific has happened, his blood work is good, but he still feels pretty consistently like shit. And let me tell you, a person who feels like shit all the time tends to be an asshole most of the time. Through no fault of his, let’s be clear, but still it’s a normal and consistent reaction.

And now before you judge me, think, seriously think about living with someone who feels ill most of the time, who can’t eat because most foods and smells disgust him and you’re the one cooking, who acts normally one minute and then yells at you the next because he’s trying to act normal but snaps because he’s just uncomfortable all the time, but you’re the one getting snapped at, who always shuts you down when you suggest something because his initial reaction to everything is negative. Of course I understand that he’s like this because he feels like crap ALL THE TIME. I get it. And I also realize that I can’t really know how he feels, because, well, I’m not in his shoes, and I don’t want to be, I thank God every day that I’m not. I get that it’s not his fault. I get that he’s struggling more than I am. I get it. My brain understands all of it, I swear, but my heart is tired and sad and lonely. Cancer changes things more than I thought possible, and now I’ve found myself waking up in a panic at night wondering if things will ever go back, if they will ever get better. And that’s why I wish I was one of the people who leave. Because if you leave you may well feel guilty and ashamed but you’re living your life, you’re working towards something, you’ve got a future to build and at this point I honestly can’t say which is the better trade off.

The point is moot, of course, cause I can’t leave. I don’t know if it’s genetic wiring, if it’s an overwhelming sense of duty, if it’s love, but for now leaving is not an option for me, but let’s not judge too harshly the people who can and do leave. Having cancer is terrible, it’s undeniably worst for the person who has it than for anyone else around them, but being the person taking care of things, picking up the slack, being the sounding board, the shoulder to cry on and the punching bag isn’t exactly a walk in the park either. Being the person next to someone who is fighting cancer is sad, and frustrating, and exasperating, and tiring, and it’s very, very lonely. Cancer changes everything, and that, my friends, is the ugly truth.




I'm linking up today with Shell at Things I Can't Say.