Living with an illness for which there is no cure

For the past fifteen years, I have had an incurable form of leukemia.

Such diseases used to be called terminal illnesses, but we don’t hear that term as much anymore. With all the new drugs and treatments available, doctors have become more reluctant to refer to diseases they can’t cure yet as “terminal.”

In the years just after my diagnosis, when friends and family would ask what could be done for it, I used to say that nothing could be done, adding: “It’s terminal.”

I was trying to be honest, to say, “Come now, we must face this.” People’s reactions of shock and sadness, though, made me wish I’d put it some other way. But what other way?

My father, who’d died of the same form of leukemia at age forty-three, had never known what he had. It was a secret my mother kept from him and from my sister and me–and as with many such family secrets, each of us paid a high price. So I wanted to be all about honesty.

I continued to use those words, yet they never felt quite right. I began to sense that there was a lie in them, and eventually, I realized what it was: aside from bouts of fatigue, I was feeling fine! The looks of pity I was receiving just didn’t match my physical state, and once my initial shock and fear had dissipated, they didn’t fit my emotional state either.

As time passed, I felt more and more of a disconnect between the concept of someone living with a terminal illness and the actual realities of my life. After the first six months, I wasn’t even thinking about my illness all the time, and after more time had passed, I felt and behaved pretty much as I had before being diagnosed. It seemed almost fraudulent to claim to be “terminal”–as if I should wink or make little quotation marks with my fingers when using the word. I began to question why I was telling people about the leukemia at all.

One day a good friend came right out and asked me how it was to live with the knowledge that I was going to die.

I took the question seriously and prepared to explain as best I could. What came out instead was something like: “Well, you know, I live with it pretty much the same way you do.”

She seemed genuinely taken aback. After frowning thoughtfully for a moment, she said, “That’s true”–but without much conviction. Neither of us knew what to say next.

What I’d realized just before speaking was this: we all know that we’re going to die, and yet we make our breakfast every morning, shop for curtains, go on trips, write poems, get married, see the dentist, attend our children’s school plays and so forth. We don’t focus on our death all the time. It isn’t natural to do so–not because we’d be sad and frightened all the time but because it’s not in our nature.

What’s natural to do is to live. Other kinds of creatures know perfectly well about death and will go to great lengths to avoid it, but when they’re not busy avoiding it, they carry out their normal routines, living their lives. Humans facing the possibility of death up close for a significant chunk of time, as during wars or living in places near volcanos or earthquakes, etc., will find a level of normalcy that allows them to go about their business. The life force will assert itself.

The truth about having an illness for which there is no cure is that you’re not dying of it most of the time. Dying is a very particular state in which the body is clearly losing or has lost the battle with the forces breaking it down. Most of the time, I’m not much sicker than people with a mild cold. When my disease waxes and I become more sick, I’m still far from dying, even if I look like a frog with mumps.

I did come close to death, before my last treatment a few years ago. Some nodes inside my abdomen had become large enough so that both my breathing and elimination were in a spot of trouble. Without doubt, I felt much more authentic!

But once I began treatment, the situation abated, and once more I felt fine. As with the memory of pain, I hardly recall those few weeks, and now again I’m no more dying than you or you or you.

Lately, if I have to describe my disease to someone other than a nurse or doctor, I’ve been saying that it’s a chronic form of leukemia that can be treated for years. I remind people that I’ve lived a full life for almost the entire time since I was diagnosed in 1998.

I no longer need to point out to others that their lives are terminal, too. None of us likes to be reminded about that. Not even me.

Ellen Diamond holds degrees in counseling and social work. Her father died of CLL at age forty-three, and another close relative is now facing treatment for it.  This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission. 

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  • Elaine Jesmer

    The fact that we all seem to forget is that cancer is not curable. It never has been, and it’s likely that it never will be. Using the words “curable” or “uncurable” is a disservice to all of us who have a disease like cancer. For people deemed “cured”, they may take their eye off the ball. For the “uncurable”, they will live for as long as they live, with the idea that they will die of their disease. It’s just wrong. Unless the medical profession says “There’s nothing more we can do for you,” you are living with a chronic disease. I’ve had metastatic breast cancer for 8 years, starting my 9th year in July. I am not dying of this disease. I’m not even living with it. I’m just aware and vigilant. And I have a lot more time left, even at the age of 74, than the person who gets hit by a car crossing the street today. As far as this disease is concerned, there is much we can do: make sure we’re getting the best treatment available, and refuse to accept bad news on face value. Either cancer determines my future, or I do. So far, just as planned, I’m in charge.

    • Kelly

      I think that is a great outlook you have but I do believe that people can be cured of cancer. I say that because my neighbor had breast cancer and has been cancer free for 20+ years. I know that is unusual and she still follows up to make sure it doesn’t come back.

  • Molly_Rn

    Life is just a crap shoot. You don’t get medals for being a martyr and not even credit for living a good life. You are a very brave person and your courage is admirable; I wish that meant you could be cured. I hope you stay strong and continue to live for each day. We all should be grateful every day when we awaken and are still here.

  • liz4cps

    I have an ordinary chronic illness, upper airway resistance syndrome (or UARS, which is like sleep apnea but not as easy to manage with current cpap/autopap technology), and that affects my life more than your leukemia seems to affect yours — that has me shaking my head. Mind you, I’m glad I don’t have cancer and that I don’t need chemo! But I’m still amazed at how well it sounds like you’re doing.

    Day to day, I’m too tired to hold a normal job; at times, I have trouble simply staying awake. Nearly always, I have a lot of fatigue, and I have to say no a lot…

    I do connect with other chronic illness patients on the website, Peace in Chronic Illness, and we have recently decided to allow cancer patients to join. For years, it seemed too different — cancer was more acute and you either recovered or died in a relatively short time — months or a year rather than the many years we typically deal with. But that’s not true any more. We tend to define chronic as something that can’t be cured and usually not effectively treated either, but isn’t necessarily terminal or at least isn’t for a very long time, like Parkinson’s.

    Interesting how diseases considered chronic come and go — we don’t get nearly as many people with fibromyalgia as we did 4-5 years ago, as I guess treatment is more effective now than it was then. And now many cases of cancer have become chronic…

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