Wednesday, October 19, 2011

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.


  1. Mi sono rivista in una parte del tuo scritto, perchè anche io in casa mia io sono quella forte, quella positiva, quella che sa guardare avanti anche nei momenti difficili......dopo un po' di tempo che i gemelli se ne erano andati, una mia amica mi ha confessato: "Sai, io non ero preoccupata per te, sapevo che avresti trovato la forza per reagire....perchè tu sei una donna forte, ma per tuo marito sì perchè lui è uno che si abbatte!" a nessuno mai viene in mente che anche noi cosiddetti forti avremmo a volte bisogno dei nostri momenti di debolezza? Che non siamo forti per contratto ma semplicemente perchè ci viene spontaneo, ma non obbligatoriamente deve essere una situzione permanente? L'unica cosa che posso fare è abbracciarti forte forte anche se da lontano.......Barbs

  2. Wow.  What an honest and reflective post.  Thank you for sharing so openly.  Wish I had some words of comfort or encouragement to give..  Here's a big virtual hug for you (squeeze).  I have not experienced cancer with an immediate family member, and I can only imagine and empathize.  I hope that you have a good support system for yourself.  It sounds like the cancer has turned your world upside down and shaken you and your family to the core.  I can only say, take it one day, one hour, one minute at a time.  I'm working hard myself on being mindful and in the present moment.  Sending your prayers and strength.

  3. Dearest Yara, 

    I ache for you, I really do. 
    Perhaps the upcoming vacation in Houston will give you a little time to decompress and work things out in your mind and heart. 
    Sometimes a mini-break can do wonders. 
    Looking forward to lots of cawfee tawk, hugs, Alcira

  4. ....mi conosci....talvolta (solo talvolta?) sono voglio consigliarti ancora di fare il corso Art of Living: ti aiuterà a 'fuggire' quel tanto che basta per recuperare le forze e stare meglio di prima. Ti voglio bene, Claudia

  5. I think marriage is hard enough when you are just going through "normal" life together. You add in all the extra stresses you are going through and it has to be so incredibly tough. 

  6. I would like to hug you.  I don't know you, and this is my first visit to your blog...but I would like to hug you.  I can not imagine going through what you are living through.  Marriage can be frustrating when both partners are mostly healthy, with one ill... Meh.

    I hope things get better for you.

  7. Oh how I wish I had something remotely useful or comforting to say. I would never judge your decisions and I can scarcely imagine how incredibly hard this must be for all of you. That kind of's beyond what anyone should have to go through. You are brave to stay, and incredibly brave to write this. I hope you have a good support system you can reach out to, so you don't have to be alone with all this. You don't have to and shouldn't have to carry it all alone. My heart is with you, my friend.

  8. I'm literally pouring tears as I'm writing this. There's clearly NOTHING I can say that would make even the tiniest bit of difference to your situation - but I'm sure your words would make a difference to someone else in a similar situation. Even if it's just to know that somewhere, someone is going through the same struggle. While you're carrying all this, who's being the sounding board for you? I hope you've got some support and people who you can shout at on the days when you need to. Because everyone needs a wall to shout to. You shouldn't always have to be the wall yourself.

  9. I don't understand what you are going through, I couldn't possibly. But I want you to know that I'm thinking of you and that I, for one am not judging. Staying is the hardest thing to do. Even though you might feel hopeless right now please know that I'm holding on to hope for you. xo

  10. This post made me cry. Your therapist is absolutely right - lots of people leave.  I am certain it's true, it  changes everything. And you can deal with terrible enough circumstances that they alter how you feel about the other person forever, even if you don't want them to. I haven't dealt with cancer, but I know from other tests that I'm not a person who leaves either. I do see leavers as being weak, though I might understand it. I judge more than I would like.

  11. I am at a loss for words. What a beautiful, sad, honest post. We have been friends for so long, good friends. Yet who is this amazing woman writing? I love the Husband dearly but I get every word you wrote,they resonated deep inside. Your honesty will change someone's life. That is all I can say.

  12. This is my first visit to your blog via 'Pouring my heart out' and I'm truly inspired.  I admire your complete and utter honesty.  I kinda understand a little of what your going through.  I've recently had surgery to remove a cancerous lump from my back and it has certainly put life into perspective.  For a few weeks now and for a few more weeks to come my husband has been put in sole charge of our household and I love him for rising to the challenge - we have four children (8, 7, 3 & 1) and one helluva busy schedule!!  Stay strong and continue communicating... I'm sure it must help!!

  13. I have never read anything as honest as your post.  As you said, cancer changes everything, and the closer you are to it, the more profound the change.  Like the other commenters, I hope you have a support team of your own, and take some hope in the fact that nothing in this life stays the same.  Life is constantly changing.

  14. Yara Bella, This post touched my soul. Your honesty and true humanity are one of a kind. Cancer does change everything, and but more changes will come..good changes. The light will come back to your life. Cuando menos el sol. Te quiero mucho. Muchos besos desde Miami.