September 21, 2011

Pouring My Heart Out

There's something I've been meaning to write about for a long time, but I haven't known how to say it.

And, for a not-quite-as-long time, I've been reading some posts from Pour Your Heart Out with Things I Can't Say.  The idea is to just let it out.  Say all those things.  Or, at least, write them.  So... here it goes...

People never seem to know how to react to the information about my husband's medical history.  It comes up fairly frequently when meeting new people, because of the standard litany of questions that people ask.  It comes up a lot at the beginning of a semester.  It comes up a lot when you see somebody you've known for a while, but only vaguely or professionally.

I feel like I have this rehearsed speech, "Hello, my name is Lea, and my husband is recovering from brain cancer.  No, it's not in remission, it's not the sort of cancer that goes into remission, but it's essentially gone.  They haven't been treating this kind of cancer successfully for long enough to know what 'cured' means.  He's doing fine.  He's doing great.  It's a miracle."

And so on.

And as people get to know me, or us, they start to ask questions... questions that people who knew us before would never ask.  Questions that are just plain ridiculous, but people want to know.

When you meet somebody, there's just a big question mark for their entire lives before the day you met.  You don't know how they've changed, what they used to do, how they used to act.  And when you hear that something BIG happened to them, it must be hard to simply assume that before they were pretty much exactly the same as they are now.

And so, once in a while, somebody asks me a question like... "If you had known that M had brain cancer, would you still have gotten engaged to him?"



M and I got engaged about 16 hours before the events that led to his diagnosis.  I had known that I wanted to marry him ever since we started dating.  It wasn't exactly love at first sight, but he knew it, I knew it, and most everyone who knew both of us knew it.

Something as stupid as cancer wouldn't have made any difference.

I say that now, with the full hindsight of knowing that he survived.  That he is surviving.  Knowing that he got through it.  That he's come out the other end fundamentally the same person.

So far.

There are still questions.  We had been told at the very beginning of treatment that there would be side effects.  You can't irradiate somebody's brain and not expect some... well.... brain damage.  And we'd been told how long it would take to see it.

Well, now we can see it.  It's little things.  A bit of short term memory loss, fatigue, tiny changes that don't change who he is, but when you know somebody inside and out you notice.  Like no matter how many times I tell him what we're doing this weekend, he's still going to forget what we're doing this weekend.  Tiny little things that don't seem important, his brain is willing to just let go of.

And, as they told us four years ago, the long term side effects are completely unknown.

They hadn't been curing people of malignant brain tumors for very long.

Uncle Mouse and I had a talk about this.  We were in the car, I was bringing him to the airport to propose to his (now) fiancee, and he asked about M's short term memory.  And what the future looked like.  And if I was scared.

He's the one person who can get away with asking me the questions that came next.  He was on his way to propose, and the same summer that M was diagnosed with brain cancer, he was diagnosed with a bizarre and (so they said) fatal condition of his own.  He had a calcium deposit growing inside his spinal column, and the doctors had estimated he had two years before it completely severed his spinal cord.

And after all his own experimental treatments, after all the turns his own life had taken, he was about to propose to the girl who had been by his side throughout the ordeal.  While the choices M and I made involved me quitting my job and having kids right away, the choices that Uncle Mouse made were about his own career goals- a person who becomes randomly paralyzed can't very well become a fire fighter.  He had been through depression, addiction, and so much pain....

He had the right to ask what it's like to marry somebody when you don't know they're going to live.

I told him that if somebody had told me that he would die six months after our wedding, I would still have married M.

That if somebody had told me that they KNEW the long term consequences, that in ten years my husband would begin to lose all of his long term memories.  I would still have married him.

That if somebody told me that he would have a resurgence of the cancer in five years, that we'd have to go through it all again (if we were lucky), I would still have married him.

That maybe I'm young and stupid, or I was young and stupid, but that I thought that marriage was about taking care of somebody in sickness and health.  And as far as I'm concerned, promising to promise to do something is the same as promising to do it.  Which means that the moment I told M that he had two months to pop the question or I was going to do it first, in my own mind I'd already walked down the aisle.

I have no idea what the future holds.  Nobody does.  When you're in love, and especially when you're young, you have this idea that you're going to live happily ever after once you get married, but that's just not true.  Once you get married, you live.  And sometimes that means you get sick.  And inevitably, it means that you will die.  Someday.  Somehow.  It's not something that most of us ever want to think about, but there it is.

Could M's cancer come back?  Yeah, it could.
And he could also develop Alzheimer's.  And he could go blind.  And he could become a diabetic.  And he could get in a car accident.

And I could get in a car accident.  Or I could get breast cancer.  Or I could have a heart attack.

Or something could happen to our children.

Or our house could be hit by lightning with all of us inside and we could burn to death in minutes.

That's the nature of the future.  You just don't know.  No matter what has happened in the past, you can't extrapolate the future.

I married a man with brain cancer,  believing with every fiber of my being that he would get better.  And he did.  I suppose he just as possibly could have not.  And that would have changed nothing.  Except that instead of an ache in my heart where the ideas of life without him live, I would have a much bigger pain, an unimaginable pain, of having lost him.

But it would never change my love for him.


  1. Beautiful and brave and honest and true.

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  3. Lea. Oh Lea. Thought not the same, my mom has a fatal disease. I know the odd questions, the uninformed questions, the clueless questions, that come. I know the feelings of helplessness and loss. But I don't know any of the pain, feelings, that my stepdad has to go through to take care of her. Yet, I am sure he could have written this same post.

    And seeing someone so close to me go through this, and now you, I know that love might not cure disease, but love is what makes life worth living.

  4. I like Lisa am also watching this "as the child". Constantly worried about my father having to take care of my mom (who suffered brain damage this very summer). One thing I am sure of, he would never have left her, even if it had happened 45 years ago.

  5. This is absolutely beautiful and heartfelt. Praying for you guys and your friends! I'm sorry that you guys have had to go through this.

  6. Thanks for sharing this with us all! I am one of the people that ask questions, not to offend, but to find out. You have probably helped a lot of people know more about brain cancer and loving someone through it.

  7. Loved this post, made me cry.

    My baby sister buried her husband 3 1/2 weeks ago. They were only 23, and hadn't even made it to thier one year anniversery. I know without a doubt, if she would have known he would get in that accident and pass on, she would have married him anyway. Because when you love someone, you love them no matter what. With everything you have.

    Thank you for sharing, it was a beautiful post.

  8. And that is what marriage is all about. If you aren't ready to truly take the bad with the good then you shouldn't get married. You and M are lucky to have found each other.

  9. Love is really the most important thing. Such a strong one that you two have.

  10. Wow. This is truly amazing. What a gift you have in his healing and your unconditional love for eachother.

  11. I just stumbled upon your site today and I'm taking it as fate. Your writing is inspiring and this post made me cry. I just spent a bit of time justifying my marriage to some friends after admitting to a really rough patch my husband and I went through. You have put into words that beautiful feeling of love, that has no explanation or rationality, and that drives us all to be BETTER, despite the circumstances. Thank you. I'll be following you! :)

  12. Wow, what a beautiful post.

    I am so happy you stumbled onto my blog too, as I am enjoying reading yours.

    :) Nice to meet you!

  13. My memories of that period about you two were that it was beyond remarkable that you two had chosen to forge ahead with the wedding and the family. It displayed a maturity that a lot of people around me didn't have. I didn't get it completely until I met my spouse. You may have been young but you weren't stupid - you have a great love. And it's a blessing beyond any words I could come up with.

  14. We are going to be great friends. I married a man with a disease thinking he would never be cured. He was cured just this last year in a way we never expected.

    We chose a love that was the hard road but filled with reward! I am so glad to meet you.

    Julie from Just Jules

  15. What an honest and heartfelt post. Just found you and followed. Im on the other side of the road so to say. I have been married for 9 years now. We have been together for 14 years. During an ultrasound of my last pregnancy, I was diagnosed with liver failure. While at first it seems life had gone completely off track, we have managed to pull it together and are stronger than ever. My husband has been my rock. I don't know if I will ever be able to thank him for getting me this far. I am blessed. Just as your husband is to have you. Sending hugs and prayers for continued healthy and love.

    1. This is so strange! I was just reading your blog while you were commenting on mine! So nice to "meet" you! I was wondering about your transplant needs... can you do partial transplants? Or do you need the entire organ? I thought livers you could do just a part of somebody else's...

      I am very dedicated to the idea of/practice of organ and tissue donation. I'm on the bone marrow list, and I donate blood whenever I can. I'd love to learn more about your situation, and find out if there's any way I can help.



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