Cancer (Caregiver) Feelings: Yin and Yang

The other day I was talking to my wife about my struggles with writing. I wanted to submit some short stories for a publication but I was having trouble coming up with things to write about. She asked me a very sensible question: “What do you want to say to the world?” I thought about it, and only one answer came to mind then, and I still don’t have a better one:

I’m tired.

I feel drained, hollowed out. Not all the time, of course, but it’s my default state now. Some days are good, some days are bad, but the common thread through all of them is a bone-deep exhaustion. Not exactly the kind of thing that a reader is dying to pore over. There’s good reason for it, of course, just like there’s a good reason for the depression, the feelings of powerlessness, the nagging question of whether life’s mundane responsibilities like paying bills and worrying about a credit score is worth it due to an occasionally overwhelming existential crisis that’s part and parcel of our every day.

The reason, obviously, is cancer. My wife wrote a great piece yesterday, sort of a primer on her cancer, what it means, and where it puts us. We get asked the same questions a lot, so she wrote an FAQ. It’s here, and I want you to read it, because it really explains what we’re dealing with. When you’re done, come back here. I’ll wait for you at the next paragraph.

Cancer Feelings FAQ

Welcome back.

My wife, over the years, has written several blogs exploring the various feelings that cancer has left her with. They’re really worth reading, not only because she is a very witty and talented writer, but also because it may help you gain insight into the world of a cancer patient, and you either already know someone close to you with it, or – unfortunately – you will one day. They’re on her blog, they’re funny, insightful, and very, very real and true. I’ve linked each of them below:

Anger

Fear

Gratitude

Isolation

The Dark Side

Parting Wisdom

Nervous

Round 2

Positivity

Back when she first started doing these, she’d wanted me to do some as well from my perspective as her caregiver and partner. I said I would, but I never did. I thought about them, kicked around some ideas, but I never actually started writing one. It was always too raw. It was like picking open the scab covering the deepest darkest festering wound in the very core of my being, or drawing water out of an unfathomably deep well of tears. I couldn’t think about trying to express any of those feelings – the shocked numbness of realizing our life’s ambitions had been snuffed out in a matter of hours, the mourning of the children that we’d never get to have, all of it – without crying silent streaming tears until I was a husk.

I was too afraid to go back to those moments. The 8 hour vigil awaiting word from her emergency surgery. Holding her hand as she came out of the anesthesia and her immediately asking me if her ovaries were intact, and having to tell her that we’d never have biological children of our own. Sitting beside her in a chair as she slept fitfully in her hospital bed at 3 am, holding her hand and feeling angry and cheated, not for my sake, but for hers, and thinking it should have been me.

Over time, as she went through treatment and was in the best three-letter state that a cancer patient can be in, NED (no evidence of disease), the idea of writing the blog lost urgency. I still thought about it from time to time, as a look back, but even in that blissful time I was afraid of the dark knot of pain those memories lived in and what would happen if I accessed them (I have a great memory in only one way: I can block out months, years, even decades of memories if I want to, just shunt them to the archives and keep a hammer ready for the times when they leak out and need to be battered back into the recesses where they belong. I’m sure it’s very healthy).

Then the cancer came back. We waited on hold for months, waiting to see when it would reach a point where it needed to be treated. And now we’ve been in treatment for six months, and as you know because you read the Cancer Feelings FAQ, this is essentially where we’ll be for a very long time. It’s now our life, our reality. And I finally think I’m ready to talk about it. The crying is no big deal. I’ve already done it three times since I started writing this, but it’s OK, because I’m sure you didn’t notice.

I keep trying to lighten this up but I don’t think I’m doing a good job. Here’s a picture of an otter.

otter-05

LOOK AT HIS TUMMY!

Better? I hope so. I really don’t want to make people miserable.

Anyway, I’m going to touch on a couple of different feelings that dominate my life as a cancer caregiver. There are a lot more, which I may get to one day, but I want to discuss two in particular because they are the yin and yang of every day since late July 2015. They are inseparable, and each contains within them the core of the other.

Powerlessness

There isn’t a word for this feeling that quite captures it correctly. Powerlessness comes close, as does impotence, helplessness, defenselessness, and a few others, but they don’t quite cover it. There is no word for the feeling that arises when you are holding the hand of the person you love most in the world who has to face the most terrible news, or another round of poisoning, or another surgery, and there is nothing you can do about the root cause of any of it. I can bring her blankets, I can be there every step of the way, I can do a million things, but I can’t do anything about the cancer. That feeling, that utter uselessness in the face of a thing that is trying to kill the most important thing in your life, has no word that encapsulates it or describes it accurately.

Nearly every other feeling that comes along with this journey ends up here. The anger – and there is a lot of it; as my wife often jokes, she and I have a lot in common with Bruce Banner – the despair, the fear, the anxiety, all of them come back to the sheer inability to do anything about the disease. No matter how strong I am I can’t choke cancer into submission, no matter how smart I am I can’t cure it, no matter how much I love my wife I can’t make the universe understand how fucking unfair it is and get it to change its mind. Nothing I can do will stop her cancer from growing.

Now, obviously there are things that I can do to make her life better. That’s what gets me out of bed every morning. It’s what keeps me going. But the powerlessness is always there, because I can’t stop anything, no matter how much I want to. I can’t take it from her, can’t instead put it on myself, can’t lift the burden on her soul from having to deal with it every single day. I’m like Sam to her Frodo, only there’s no Mount Doom we can go to get rid of it. Only the journey, as long as it lasts.

It fucking sucks.

And its twin feeling, that which is intertwined with the powerlessness?

Happiness

Here is something that is also true: I’ve never been happier in my life. Now, you might be wondering how fucked up and dark someone’s life has to be that dealing with cancer marks the happiest point in their life, and I won’t lie that my life hasn’t been the sunshiniest thing in the world. But ever since cancer burned down our lives, something wondrous emerged from the ashes.

Perspective.

Knowing that the woman and life that I love could be gone way sooner than I could have ever feared has brought into stark relief what truly matters in life, for me at least. It’s not work success. It’s not money, or fame, or cool cars and exotic trips and expensive shit. It’s time with the people you love. That’s it. The greatest success in life is to love and be loved, and I’m glad I realize it now. A walk in the woods holding my wife’s hand is better than any place I’ve been and anything I’ve done. I’m happy right now thinking about it, just being near her, seeing her laugh, listening to one of her puns that makes a part of my soul die, hearing her sing, watching her nuzzle our puppies. It’s a feeling of contentment and completeness that I didn’t know could have existed.

Every single day is a gift for us, and I take so much joy in being able to spend it with her. The happiness spreads to the other people in my life. The people that have stood with me in good times and bad, from the lowest depths to the soaring heights, and I try to make sure they know that I love and cherish them. The people I’ve met on the way, on cancer journeys of their own, who have let me know that I’m not alone and whose support and kindness has been indescribable. I am known for my snark, my rants, for things that I hate, but in actuality I’ve never had more love of life and joy in everything than I do right now. If you’re reading this, even if I have never met you, I want you to know that I love you, just for taking the time to read this.

All of that love comes from how happy my wife makes me feel. The wonder and joy and magic she has inside her – even now, after all of this shit – reminds me every day how lucky I am to be with her on this road. I’m exhausted, I’m angry, I’m bereaved, I’m powerless, but all of those things have a root in one simple fact:

I’m happy.

And I’m crying again, but that’s ok. Not all tears are an evil.

About Alan Edwards

Cancer caregiver, writer, accountant, gamer, poolboy, and dispenser of terrible advice that should never under any circumstances be followed.

Posted on May 9, 2018, in Self Reflection and tagged , , . Bookmark the permalink. 16 Comments.

  1. Savannah Slotnick

    I could not have asked for a better human to be the soulmate of one of my favorite humans. You are an incredible person. Thank you for writing and sharing this. Love you.

    • Alan Edwards

      And I couldn’t ask for better… I’m not sure what the word is that goes beyond friend or family to the realm of soulbonded loved ones, but that’s what you are. Love you so much.

  2. I sat here for an hour trying to think of something witty or sarcastic to say to try and lighten the mood, but ultimately saying nothing for fear of of trivializing a serious topic, or minimizing someone else’s pain, or (God forbid) making it all about ME. The truth is I don’t handle negative emotions very well–or at all really. My strategy has always been to run passed it all and ignore it, (maybe rant for a while or turn it into a joke occasionally), convincing myself that I’ll get through it and things will get better because it ALWAYS DOES. And that’s always worked for me; it’s always been true, because any “real” pain I’ve ever experienced has been tangential… through others who are actually going through it, so it’s fleeting at best, or relatively easy to put out of mind at worst. Maybe it’s comforting to hear “I know how you feel” and actually believe it, but I couldn’t possibly do it.

    The truth is that one day, my strategy isn’t going to work, and I understand that. I just don’t know what will come of it when it does. Will I be extra grateful for all the times it HAS worked (it was good while it lasted)? Will I continue to delude myself and go on believing that things will get better (denial is a friend of mine)? Will I regret putting off learning how to process and deal with negative emotions and collapse into a heap of “Give-Up” (yes, I made it a noun)? I don’t know. Maybe faith really is the most important thing in times like these. I don’t necessarily mean faith in a higher power, but faith in each other… that even if we don’t know how to convey it, people wish the best for everyone. To be able to understand people and care for them on a deeper level than just a shared love to hate things. Or even if that’s as far as a connection goes, that it’s worth something.

    At the risk of sounding even more pretentious with my introspections, I think I’ll just leave it there. I often don’t say anything in cases like these because I’m so convinced that silence is the better option than whatever crap I have to add, but that’s never been the case for me when the roles are reversed, so I don’t know why that’s always my go-to assumption. At the very least, I could let you know that I read your blog, it made me think, and I hope there’s a lesson in there somewhere that I can take with me, even if that lesson is unconscious–the best kind. That’s all an artist/writer can ask for, eh?

    So I guess that’s my perspective… the abridged feelings of a cancer bystander.
    (Yup… had to make it about ME. Success…)

    • Alan Edwards

      Hahahaha!

      I truly understand how you feel. Denial, suppression, deflection – basically it was how I lived my life. I still struggle sometimes with saying things when others are suffering because of all the reasons you laid out here.

      So knowing that feeling very well, I have to say that it means a lot that you did comment. You’ve been a supporter of my blog for a long time, and I can’t express to you how much that has meant and continues to mean to me. I won’t tell you that I love you, because that might be weird. But I did already say it in the blog, and I mean it. Thank you.

      • Pfft. Not weird. I’ll say it: I love you…

        No… no, you’re right. It’s weird. “Platonic.” That qualifier makes it okay. Have I mentioned my intimacy issues as well? lol. They should add a “like” feature here like on Facebook. That would have been enough. 🙂

        • Alan Edwards

          Hahahahahaha! It’s a shame that our society makes the expression of caring and support and affection for someone a weird and uncomfortable thing. At this point, I only refrain from saying it because I’m afraid of making the other person uncomfortable, and lots of times I make it less personal to make it less weird. Like this:

          Love you, girl *finger guns*

          • LOL! 100% works for me. I’ll gladly accept those bullets, sir. And in the meantime, I thought of the perfect way of saying it: “I have love for you.” Totally acceptable, serious tone, but totally non-commital. Muah! Perfection!

          • Alan Edwards

            That’s perfect! Well, it is if you add finger guns. Finger guns make everything better.

  3. Alan, I remember being pissed at yet another diagnosis for my son-I was ranting over how unfair life/god/the universe was that my son had yet another shitstorm to contend with-and his dr asked me who “should” have it instead. When I replied me, he said that then I couldn’t take care of my son as well… it sucks, big time, but kept supporting each other.

    • Alan Edwards

      I can only imagine the pain when it’s your child in those situations. It’s got to be gutwrenching in it’s own unique way that only a parent would understand.

      Your doctor makes a great point, but damned if it isn’t hard to accept most of the time. Thanks for sharing it. ❤️

  4. Everything you’ve said here is everything I’ve ever wanted to say about caring for my dad. I’m so sorry you and your wife have to go through this, but am happy you have each other.

  5. Your sharing is such a gift. Loving you right back.

  6. Joyce Burk Brown

    Thank you Alan…for sharing, caring and loving so deeply. Sending love to you and June.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: