Breaking Radio Silence

I wish it were cancer.

That’s a cruel thing to say. Cancer is awful, the treatments are painful, the whole experience is a nightmare for the patient and their family. I know how stark and raw it feels listening to a love one be diagnosed. I know how cold the seats are in the oncology department when the doctor calls to tell you that it’s time to talk about the test results. I know the looks of sorrow on people’s faces when you arrive at oncology with a small child in tow to get another blood test done.

Been there. Done that. My mother is a cancer survivor; the last time she had a positive test result come back was the same day I got my first negative test result for cancer.

I understand how bleak it is.

But I wish it were cancer that were killing me.

Cancer has an ending. It has a time frame. It has a limit. You either get better or you die. Either way, it ends.

Cancer patients are fighters. They’re lauded and applauded. If a cancer patient says they’re too exhausted to move and that they just want to lay on the couch all week no one questions that. The cancer victim is given a fluffy pillow, a nice blanket, a light meal, a bowl to throw up in, and they watch a movie as they drift into an uneasy sleep. Sometimes you’ll see a cancer patient going to work, and everyone will talk about how heroic their efforts are. They’re held up as idols of humanity (which is a whole different rant).

When you have cancer there are ribbons, fundraisers, sympathy, and support.

When you have a chronic illness you get nothing.

No one cares that it’s hard to breathe and you’re so tired all you can do is cry. No one is going to tell you how tough you are for getting out of bed. If anyone remembers the most you’ll get is a curious look and a thoughtless statement.

I thought you were better.

Are you sick again?

Have you tried __________?

Just cheer up.

There is no end to chronic illness. That’s what makes it chronic. There aren’t limits. There aren’t sympathy cards. There is very little understanding. Sometimes there aren’t even treatments.

If cancer is a battle, chronic illness is a famine.

It’s exhausting just writing this, because what can I say? I have chronic anemia. It’s an aimless, almost blameless sort of condition. One that does nothing but suck the life out of me leaving my head foggy, my limbs achy, and my motivation gone. It’s like having the flu but it doesn’t get better. The doctors blamed my last pregnancy… that baby was born in 2012. It’s been nearly six years and my iron levels remain chronically low, frequently dipping so low that I spend eighteen hours a day asleep and the rest of the day in haze.

I really wish it were cancer.

Maybe if it were cancer the doctors would care. Maybe then they’d provide something other than an iron pill. Maybe they’d look for a cause instead of shrugging and telling me I just need to power through it. Because we all know human bodies don’t really need *that* much oxygen, so who cares if my iron levels drop? Maybe then it would be easier because I could count down until my last chemo treatment or my next blood test. There’d be markers, signs, indications that I was getting better or worse.

Wishing won’t make this easier. Hoping, praying, dreaming… I don’t have the energy.

In a few weeks I go back to the doctor. Again. For another battery of tests. Again. For another round of prescription iron pills. Again.

Maybe, if I cross my fingers and wish on a star, maybe this will be the last time. Maybe I’ll get better. Maybe I’ll feel like I used to before I was sick. Maybe.

For now? I’m going to curl up under a blanket, cheer on my writer friends, and watch a movie until I fall asleep. It’ll be okay… right? They say any day you aren’t dead is a good one. So being even half alive is a win I suppose. I’m not dead. I don’t have cancer. Doesn’t that make me one of the lucky ones?

For everyone out there whose trip to oncology wasn’t as good as mine, I’m sorry. You’re in my thoughts. Cancer is a battle that I don’t want you to lose.

For everyone in the famine lands of chronic illness, keep going. You never know when the rains will return and life will change. You just have to hold on until it does.

I love you.
– L

5 thoughts on “Breaking Radio Silence

  1. thank you for this. Your honesty is welcomed. Your words could be my words, except I would never write as well.

  2. Focus on what you can do and what makes you happier. We all hit a point in our lives where we are on the down hill slope. I have seen may people die in so many ways in the 24 years I have been a firefighter. This morning a 31 Yom was dead from an overdose. He was his mother’s only child. She had a stroke and could not tell me his name or birthday. I can still hear her anguished crying hours later in my head.

    To put it bluntly, we are all dying. No one can escape that fate yet. You have been handed a terrible chronic disease to deal with. You have a young family and husband to care for. You also have a great talent for writting and knitting.

    Nothing can change your situation, only how you handle it. Do you let this control your life or do you plan your time wisely?
    Research your illness and do your best to manage it. Your kids are getting to the age where they can be helping with the household tasks and food prep. Give everyone responsibilities and hold them accountable.

    Things to consider are quality of life, child care, mobility, living wills, wills, spiritual growth, funeral plans, insurance, etc.

    Live in the moment, and enjoy present the best you can. We can’t change the past and worrying just make you miserable.

    I have lost friends and family from accidents, cancer, Heart attacks, and aids. Not to mention work related stress from being a first responder and doing medical aid or CPR on children, teens, and adults who die.

    What you are going through is terrible, and I wish you the strength and the wisdom to handle it. You are brilliant, smart, and a damn good writer. Your family is fortunate to have you. Manage your illness and be flexible in rolling with the punches.

    All my love to you and your family.

    Flo

  3. Liana, I understand what you’re going through. I’m in the middle of a chronic illness famine, as well. There is no end in sight for me, either.

    Have you had your kidney function tested? Chronic anemia is a symptom of kidney failure, among other things. Not that I’d wish you kidney failure, but at least with dialysis, they treat my anemia with blood-producing hormones and IV iron, and keep my hemoglobin up between 8% and 11%. So there’s that, at least. It wouldn’t help with your EDS, of course, but that’s another issue entirely.

  4. I don’t really have any words of comfort for you, just wanted to say that I get it. Life sucks. You’re not alone, which also kinda sucks, but at least there’s company down here.

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