Terminal, incurable, alive.

It’s a heady mix. You have advanced cancer which is, by definition, both incurable and terminal. And yet, thanks to ‘the wonders of modern medicine’, you’re alive–aka–not dead yet.

Because you prescribe to not just a glass half full but rather a ‘my cup runneth over’ mindset, you always try to stay focused on the bright spots. First, waking up in the morning. Never, ever, taken for granted. The chance to see your children even a few minutes longer–mind blowingly awesome. Meeting fellow travelers on this friggin ‘journey’–others who’ve been smacked upside the head with cancer–your life has been made oh so much richer by each and every one of them. And then there is the fact that you get to hang with your oncologist (a goddess) and a bunch of swell nurses—perk and more perks.

So yeah, you’ve been fortunate. And at the moment, you are on a targeted therapy that is keeping your cancer in check. You don’t even look as if you’re sick, let alone terminal.

Which, by the way, makes it very easy for those around you to forget that you have cancer at all.

But you, you’re always aware. Friedrich Nietzsche once said “That which does not kill us, makes us stronger.” Bullshit. Sometimes it just keeps on trying.

Each day you continue surviving is an achievement. It is also a tremendous struggle–physically, mentally, emotionally, financially. An endless struggle too, as there is no top of the mountain, no victory lap, no cure in sight.

The heady mix becomes a mind fuck. If you are lucky, you have adequate support. Enough resources so that you don’t live in a constant state of anxiety; friends and family with sufficiently long attention spans who don’t drop away when terminal becomes chronic.

Because the truth is, nobody wants to think about cancer all the time. My marriage ended, in large part, because my partner found our lives too ‘cancer-centric’. I’d break up with cancer this very moment if I were able to, but it seems we are one and the same. Cancer doesn’t just inhabit my body, on a cellular level, it is me. My own selfish, nihilistic and wildly dis-obediant cells.

Sigh. Living well may be the best revenge and most of us do whatever we can with what we have to work with. I’m certainly not interested in becoming a schadenfreude. However, when living itself (liv·ing: a : having life) is a big fat uncertainty, then living well often requires more psychic energy than a person can muster.

Short of curing cancer there’s not much you can do other than to be understanding. And supportive. It’s not easy living with the knowledge that you are terminal; harder still to remain happy while doing so. Honor that.

39 responses to “Terminal, incurable, alive.

  1. You lucky ALK gal – go the distance for me, Linnea! Over the last two and a half years since my diagnosis, you inspired me to start my own blog so that, hopefully, I can contribute to the conversation and get those researchers busy, busy, busy in their labs! The more voices are heard, the louder we lobby – the better the chance for those who come after us. Because, dammit – there will be more! Myself, I glory in each sunset – each one is special because, well – just because!

    • Jeanne Marie, so cool that you are blogging and yes, make your voice heard! And don’t stop glorying 🙂


  2. Kristen Aliotti

    You are one heckuva communicator. I am in awe. As usual.

  3. Theresa Smith

    You speak the words I think. Thank you. I am 4 years since diagnosis- ALK too. Been on Xalkori for 25 months!!!!! It’s still working. But it’s a struggle every day.

  4. Brilliant. Exactly how I feel. Thank you for expressing it so well.

  5. Thank you for expressing so well what I would like to tell those around me. Seven years from diagnosis of multi-focal lung adenocarcinoma – like so many others, as a non-smoker, I have never really recovered from the initial shock.

    • Mary, life will never be the same. We persevere and make a new, good life but that initial loss of innocence changes everything. xo


  6. Thank you again and again. You continue to be able to say clearly what I think and cannot seem to explain. You remain my champion.

    • Roni, thanks friend. We’re living an alternate reality–but thank goodness we all have each other. xo


  7. Wonderful writing! I have very medically ignorant in laws. They think the danger of my premature death has past. So they have gone back to benign aloofness with me which had been the norm. for 29 years. While my husband travels a lot and they know that. My Mom in law never calls me or comes to visit when I ask, she has an excuse. Bill’s 2 sisters I have tried to befriend, ignore me.

    Our best friends for decades before we lived in Europe for 10 years. They even came to visit us in London. Then, we came back 5 years ago to a home we built while we lived in Germany. Three years into this terminal cancer journey; I had brain surgery. Bill emailed Colleen about it, still no call, no email, no card nothing. I want to get over the hurt, so far, and I have tried hard, I can’t. I don’t know why. Maybe because the family are suppose to be good Catholics. Which Bill and I are too. I know I could never walk away from a friend with cancer like me.

    I rarely discuss it with anyone else especially my husband. I have to walk around with a well mask on at all times. Because the real me he he prefers to forget exists, at least until the next scan and clinic visit in NYC rolls around for the clinical trial. Which is a drive to a Baltimore then a round trip journey to NYC 3 times every 6 weeks.

    That is stressful. Now, since breaking my tibia plateau, which is just under your knee. Between a brace and crutches and my husband, the restrictions in my life have been prison like. Now, after months in the brace, I am allowed to walk with just crutches. The other day, my husband had a nervous fit that I was dead heading a rose bush, actually already walking through some grass to the walk was already too much for him. I don’t understand why I, and others like me, like you can’t be cared for or about the way we want to.

    We do have the ability to be good friends and good spouses, etc… and not talk about who we are all the time. We have other interests like most people. We have real live, living goals. I wish we had more friends and family along on our ride!

    Dace J Brennan Westminster Maryland


    • Hey Dace, it can be really isolating–I know. As I said, no one wants to think about cancer all the time but we have little choice. Stay in love with life (smell those roses)–and know that there are people who understand.


  8. Thank you for sharing it certainly hits home with me. I am stage 4 adenocarcinoma of the lung 24 months out on targeted therapy Alk thank you.

  9. Jeanette Devon

    Thank you for sharing your witty take on a grim situation … it really made my day with lots of laughs . Having advanced metastatic lung cancer myself I resonate with many of your thoughts.

    • Thanks Jeanette. I am deadly serious (no pun intended) but also can always find the lite side of things as well.


  10. Sending much love Linnea. What else can I say. XX

  11. ❤️❤️❤️

  12. Such powerful words Linnea. Sending you prayers,positivity and strength.

  13. Linnea,a heartfelt “thank you!” You hit the nail on the head.Im six months into a targeted therapy afatinib with all its accoutrements.I am not able to speak to my brother& sisters either.I have chosen to live my life my way.I now actually get excited that I’m having a good day.
    I have anxiety only for a week before tests/Dr. I’m 74.5yrs old This is my first attempt at responding to a blog.Computer illiterate as I am its important that I connect. I’m out here,scared spitless but determined to live my best life. Hello All😀😱😩😍 Sir Wesley

    • Sir Wesley, I think your attempt was successful! Welcome to my blog and know that until cancer, I was a luddite–having no use for the computer whatsoever. Now it is my go to for information, news and community. Best of luck on afatinib 🙂


  14. Hi Linnea, Thank you for writing this. You are absolutely right on. I look perfectly fine except gaining 20 lbs. from the current trial drug. I gave all my unsolved problems to God. So I live every day peaceful. I still do my shopping and cooking for the family. Friday is our family day and get to see my two sons and grandkids. I hope to live longer to see my granddaughter to grow up.
    To all the cancer friends here, do take good care of yourself and enjoy every day.

  15. I loved your perfect description of this life and the constant readjustment to whatever new “normal” becomes after the next clinic visit/scan. I just keep trying to view this cancer as dandelions in the lawn, whenever a new met pops up treat and move on. Of course I give myself the requisite 24-48 hours of anger, sorrow and general freak out before I pull up my big girl pants and deal. I have a great family and friends but unless you are unfortunate enough to have walked this path I think it is impossible to really understand what it takes.

  16. Hi Linnea. My husband has Stage 4 (BAC) with mucus and no mutations. He is computer illiterate and doesn’t want to be literate. So I am here as his caregiver and give him as much information as I can. He is a private, quiet person who rarely wants to talk about his cancer. He is always “fine” although I know differently. I as his wife of 42 years I know better. Thank you for letting me know how he probably feels. I know I feel the pain/anguish of Cancer. It changed my/our lives and I hate it but I embrace it. Each day with my husband is a blessing.

    • Gloria, he is lucky to have you as a partner as he navigates this terrain (and we all do so in our own way). Hugs.


  17. Hi Linnea,

    This is a great piece! I just want to say, Cancer patients don’t have a monopoly on being “terminal.” Everybody is terminal — born that way. I heard the statement decades ago from my late father-in-law’s oncologist before cancer said “hello!” to me. The statement is forever etched in my mind and it’s a good thing.


  18. Hi Linnea, I am new to WordPress and was browsing through the “Reader” page where I found your blog. I myself have Stage IV NSCLC Adenocarcinoma, and I am four months into Afatinib treatment. This post spoke to me greatly, and thank you for putting how I feel deep down into words. Good luck with your treatment, and I hope to read more of your posts soon.

    – Rebecca xo.

  19. Awesome blog post. My comment comes as an outsider who only watches the misery and only absorbs it as a bystander.
    I have seen a few people in my family with end stage cancer and they all were gracious people, kind and regarding of their caretaker’s time and resources. They were all gentle people.
    I read your post and tried to understand my husband of some 40 years. He has Stage IV NCSLC with mets in lymph nodes and has become progressively meaner and uglier. He explained to me today that he is tired of pretending to be who he is not, and to please people around him. He did became verbally very vile and mean. After 40 years of marriage, and spending the last 10 years supporting his many catastrophic, unrelated, illnesses, from recovering from being paralyzed, to this lung cancer, today, I met a man I never knew. A very evil and ugly person who delighted in verbally stabbing me in the heart. He is on this 10th day of Afatinib, steadily improving. I dread this new found honesty that he says he owes himself, because he is surviving cancer and nothing matters any more but surviving this cancer. He told me I don’t matter. The kids already don’t come around with the grandkids, because of his previous “honesty” towards them, and I am his only punching bag until “his” family (father mother sisters) come to visit. I hope not too many end stage patients turn like this. I am mentally devastated, having cried over his many near death experiences during chemo, and having dealt with his departure for over 2 years now. Preparing, emergency room, worrying, losing my job over making him a priority … Yes, today I feel a bit selfish and deeply hurt, because I wasted my time supporting someone who does not deserve it, in my opinion.

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