Monday, September 15, 2014

Are We Terminal?

When my friend Brigid died earlier this month, I found myself thinking a lot about my own mortality. (As these things go.) I've been living with advanced breast cancer for more than three years now, the last ten months in chemo-induced remission. But the average lifespan for someone with my illness is still twenty-six months. I've never thought of myself as terminal, but many people will describe this disease with that word. I began to wonder if I was just being wishful in my thinking.

I reached out to a group I belong to online, a support group for people with metastatic/stage 4 breast cancer to pose this query: Question for you all: how many of you think of yourselves as "terminal"? I don't know if I'm just a naive optimist or blindly mistaken but it's just never been a line of thinking I've been able to go down. After losing a (yet another) friend this week, I'm wondering if I've got blinders on.

I was surprised by the number of responses my post elicited. It received dozens of comments, mostly optimistic and all thought-provoking. I got permission to share a few of their comments here, to share their wisdom and the breadth of their experiences with all of you. These are the women who inspire me on a daily basis. You can see why.

(And if you want to donate to research for metastatic breast cancer, Metavivor is a great place to start.)

[photo credit]

I'll occasionally find myself saying in my head 'I have a terminal disease.' Honestly though, I'm not even sure what that means. I don't feel like I'm dying. My husband took a turn too fast on our motorbike a couple of days ago and we splayed out all over the road - I was definitely a lot closer to death then than I am now! Plus, most of my friends aren't even married yet. We're just starting to have acquaintances with kids. I can't be old enough to be terminal, so I'm just not, at least not right now. - Anonymous

I like to live in a healthy state of denial. I'm pretty sure I know what will kill me but I'm not dead today. So, I know the gravity of my situation but don't allow it to define me. It's a fine balancing act.....  I take it a scan at a time. I live in 3 month increments.... When that's too much, I take things a week at a time. Too much? A day at a time. Still too much? Take it an hour at a time. I get it. This isn't the life I had planned for myself or my family. But it's the life I was given. - Cristin

I've been NED for 7.5 years and still consider myself terminal. I think its because that's how it is "officially" classified. I just accepted it and mourned it and then as the years went by kind of just got on with it. I didn't think I'd make 40 and spent my $ like it too..lmao. I tell people it's terminal also to not minimize it but only when someone really probes. I also subscribe to the everyone is terminal mantra...I've had so many sudden losses and seen "well" people die while I'm still on one I know anything can happen to anybody at anytime. - Teresa

At least I have some idea of how I will die and what to expect (even though it sucks) and I can plan - I have already done my bucket list - and yes - some people will hate me for saying this but I feel lucky at the moment - it has me more in tune with others and what they are going through - it is important not to totally let it be only about YOU - I think more of others now. - Carter

I think of it as living with a dual awareness. I am completely aware that my disease is terminal but I think of myself as living with advanced cancer. Saying that, I do say 'I have terminal breast cancer' because I find for the most part people don't understand how serious it is and that I will never be cancer free. Right now I look well but that doesn't change the fact that I'm 99% sure I'm going to die young of breast cancer. - Anna

Not terminal right now. I'm in complete remission.... I think it makes women "feel" better if their cancer is one pathology over another. Or only in their bones versus their liver. It is like they are putting their hope that they might not die soon in the characteristics of their disease, when that is completely unpredictable. I personally prefer to put my hope in God who alone knows when I am going to die and trust that will happen in His good and perfect timing. - Roberta

I consider myself to be living with a chronic disease. Living with...not dying of cancer. Heart disease actually kills more woman than MBC [metastatic breast cancer]. That being said I'm pretty sure what will take my life...eventually. - Roxanne

I think of myself as living with cancer. When I go into hospice that will probably be when I consider being terminal. - Lori

I do refer to myself as terminal just to make a point to others, but the more drugs that aren't working the more discouraged I become. I do live each day to the fullest and enjoy every moment, but certain days I'm scared shit especially when tumor markers go up, scans show progression, horrifying side effects happen, etc. - MaryAnne

I subscribe to life is terminal, none of us are getting out of here alive. Every day is a blessing and I love life. Until they say sorry we can't do another thing and I agree, I am not terminal. If this is naive so be it! - Janie

I don't mean this in a downer way, more of in a Buddhist way. We're all terminal, dying. We don't know how or when. Life is fragile. Appreciate each moment, each day. - Laura

Never even thought of it as terminal. - Deborah

When I decide that it's time, then the life threatening part will take over, and there will be Hospice for me helping me to still live to the best of my ability until I actually die. I intend on being happy throughout this! - Mary

I'm so sorry about your friend. It is impossible at times to process all the losses..... I try to walk through yet wear them loosely, if that makes sense. To answer your question, no I don't think of myself as terminal at this time. I'm living with metastatic disease. Although it's in my stomach, lymph nodes and bones I'm still on the first course of therapy prescribed. I hope -- but can never be sure -- to have years between now and the time when I am terminal. Like all of you I live with that great uncertainty and most of the time it's ok. - Jody

I just never went down the road of "terminal"..... I always knew I would not die from Stage IV breast Cancer even when I was diagnosed with stage IV! I decided I would fight with everything in me and that started with positive thinking.....blinders - maybe. Whatever works. Six years later I am now NED! The doctors say I have far surpassed their hopes for each of my treatments.......I attribute it to my positive thinking, many prayers and yes my blinders or what I believe each and every one of us lives with to get through each day - a little bit of denial..... Healthy denial. - Serenity

I also don't consider it terminal like most of the ladies above me have commented. Life comes to an end at some point and it might be cancer that ends it or it might be a herd of unicorns stampeding over me. Life's tricky like that. I do try to explain to people that even though I am currently NED that I am not "cured," I will be on herceptin/perjeta for as long as they work and I might still have surgery and radiation coming up. Usually people don't understand which I'm coming to terms with. - Tricia


  1. Hi Jennifer,
    Thank you for sharing these thoughts expressed by others living with metastatic disease. Definitely much to think about here for all of us.

    1. It was such a revelatory exercise for me! In a cancer world that can feel very isolating, this query helped take away some of that loneliness (as reaching out to others in this community always tends to do).

  2. I think we need another word other than terminal because we tend to think of that as someone who will die within months or a year.
    But, chronic does not seem to fit either. I have a number of friends who have lived with chronic diabetes for 20+ years, others with chronic asthma for life, my hypothyroidism is chronic. Out of my many friends with those kinds of chronic diseases, none have died of them, and treatment is highly effective for living a normal life, not disabling through treatment induced pain and fatigue. I did have a great-aunt who died of diabetes complications in her mid-90s, but that was after being diabetic close to 40 years.
    Metastatic cancer, with life extending treatments, just does not seem in the same category as other diseases we consider chronic.
    I feel like we often live too long to really be considered terminal (thank God), but chronic just does not seem to fit either. Maybe we need a new word?
    Elizabeth J.

    1. Elizabeth, I agree 100%. My oncologist has said we'll treat this "like a chronic illness, like diabetes or heart disease," but that doesn't mean it IS chronic (although I have hope). "Incurable" is one possibility, but -- to me -- it seems to have a ring of hopelessness. I am open for suggestions, because sometimes I truly do not know how to describe what it is we're living with.

  3. I had just read a quote from you (in my book) on how you thought we need to watch the language we use around illness. If we are busy writing our stories and working to create our future, we have to hold on to the power we have to influence what will happen.Forget the "terminal." We are going to dance at Quinn's wedding. :) Believe.