can’t sleep (by Judy)

I can’t sleep tonight. Thoughts swirl around my mind — the cancer, the hope, the fear, our lives. Our lives are not composed solely of cancer, but cancer can’t seem to NOT permeate nearly every aspect of our existence. I am a person. I used to be “just” a mom, wife, librarian — someone who could exist amongst the world of the healthy people, living with certain words describing me and not being Someone Who Has Cancer . . . Stage IV Cancer, at that.

*sigh* I hate cancer. I hate the way it robs of of things in our lives even when we’re living and I hate how it robs people of their very lives, the way it will most likely rob me of my life before I’m ready to leave this earth.

So I can’t sleep. Despite my best efforts: despite Angry Birds and Facebook and turning the light off to go to sleep, and trying to relax, my mind won’t stop tonight. It’s full of thoughts of friends who are sick and friends who have died and my good friend’s mother who died and my father who died many years ago and so many people who have died of this terrible disease, cancer, in its many many forms.

I think and I sigh. I know both oncologists that I’ve seen have told me that many woman live many years with the kind of cancer that I have, I know this . . . . but I didn’t have the courage either time to ask what “many years” meant because I have a suspicion that “many years” to me may be a totally different thing to the oncologists. So I live in some kind of suspension, thinking, hoping I can beat the odds AGAIN and live a long time. Yet at the same time I project into the future and always think of how old Energy Boy will be when it’s time to quit the treatments, when it’s time to call in hospice, when it’s time.

When it’s time.

I don’t know if it will ever be enough time, not with Absent Minded Professor and especially not with EB, for raising a child is really a life-long job that moms never quit doing. That they never want to quit doing. It’s the best thing I’ve done, being a mother. He’s the best part of my life, he and AMP. I don’t want to quit at some time just because cancer has worn down my body and made it time to quit.
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I think people expect certain things of me. I think people expect me to be “up” because most of the time the world sees my smile and not my tears. I think people want me to be a fighter when sometimes I just wish I could call on someone else to fight for me, just to give me some rest. I think people want me to be able to do all the things I used to do when the reality is that my energy level and stamina are so much worse than they were Before Cancer. I may now have hair and I may “look good,” but the fact is that I still have cancer and even if I don’t go into the Chemo Room for infusions, I’m still on chemotherapy; it just comes in pill form.

I think people think I’m brave when I feel anything but. I think people people think it’s wonderful that I’m working full-time when all I can think about work is how much it saps my energy and how I have nothing left for my home life . . . and how sad that makes me. And I think there are some people (not many, but some) who wish I would just stop talking, stop writing, stop sharing my life so openly.

But that’s not me.

This — the sharing, the late-night posting, the telling of fears and vulnerabilities — that’s me, and I’m not ashamed that’s me; in fact, I’m proud that’s me. I’m proud that I can work things out online, that I can think out loud, live out loud, and put it down on the computer screen while I’m thinking things, that I can figure things out as I’m typing the very words that you now see.

That’s me.

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The house would be quiet if it weren’t for AMP snoring like a freight train. The air just went on again so I hear the whir of the air coming through the vents, keeping us cool when it’s hot outside. I wish I could take a short walk or wake someone up to get together and chat over coffee (decafe for me, at this hour) or tea and just talk about life and be witnesses to each others’ lives. I write this down so any readers can witness my life; the thing is, I don’t know about most of the witnesses. I just keep writing and assuming people are, if not drawn in, at least interested in the mundane and not-so-mundane parts of my life.

I am tired. I am tired most of the time, but if I stay up late like this, of course I’ll be extra-tired the next day. However, when the old beast Insomnia comes and keeps me up, it makes this sleep stuff difficult.

I am living. I am writing. I am sharing. I am here.

I am here.

I am still here.

And maybe that’s what matters most.

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Cross-posted to Just Enjoy Him.

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6 Responses to can’t sleep (by Judy)

  1. Shannon Kelly says:

    Judy, I read all of your postings. We’re alot alike. I am an outloud person as well and i also have cancer. I also have a 10 year old boy to whom I am a single mom. I just finished 14 months of treatments and 3 surgeries including reconstruction 1 month ago. I’ve been hospitalized 5 times during this. I supposedly have stage 1B. I want a pet scan but they won’t give me one. My body hurts so badly and now they’re sending me to a Rheumatologist. I don’t know what’s going on but I live in fear most of the time and I also live outloud. I share my story with anyone who will listen and keep no secrets from my son. I had no help during all of this because I live with my 90 year old Father who has lymphoma, the same lymphoma that took my mom 30 years ago. I just want you to know that I love reading your posts. You’re articulate, interesting and like I said, alot like me. I feel what you talk about and I know what having an EB is all about. Keep writing because it helps. Not only does it help you, but it helps me and who knows, maybe alot of others too. Love and Light to you…
    Shannon

  2. […] Cross-posted to Mothers With Cancer. […]

  3. Rachel says:

    Thank you so much for posting this… I, like you, am Stage IV, and reading your post felt like reading into my own mind. I’m working full time, have 2 sons (2 and 3 years old), and “look good” so people expect me to just go on as normal. But I’m so tired… Stay strong, and know that you aren’t fighting alone.

  4. I love your posts Judy. I love your insight and the way you say exactly what is on your mind, and as it usually turns out, mine too. There’s nothing harder than living with cancer – too many of us on this website understand all too well. So keep sharing and keep letting us in, because we are here too. For you. And you for us.

  5. Jessi says:

    Hello, I do not have cancer but my sister (age 29) does – and her breast cancer is stage IV. She qualified, quite easily due to the stage IV bit, for monthly disability payments, and due to this was able to quit her job to better enjoy her life. I know the payments aren’t as much as some’s salary, but just in case you hadn’t considered it, I’d encourage you to look into that option and how much money you might be able to receive from that! For my sister, being able to stop working has been a huge blessing allowing her to feel better physically but also emotionally as she has more time to spend with family now. Just stumbled across this blog today, but please know ALL those with cancer remain in my thoughts daily. We need a cure! Thank you for sharing your stories. Best wishes.

  6. lisa says:

    keep writing, God is giving you a voice to be heard. thank you

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