A very personal legacy

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My journey with lung cancer has involved a lot of ups and downs and sometimes the downs have been a slippery slope indeed. In the summer of 2008 I was told I had only three to five months left to live and death quickly became my familiar. Fortunately, crizotinib intervened just in the nick of time. However, because I am so far out on the medical frontier, whenever I have started an experimental therapy it was with the knowledge that there was not yet a plan B. Each time my cancer has crept back, so has the specter of dying.

Several years ago my health had taken a serious turn for the worse again and I started thinking about the way in which I would die. The most likely scenario was that I would be in a hospital bed, hooked up to a lot of tubes. And I decided this was not what I wanted.

Alice and I had already spoken about my desire to donate my lungs after I died. At my next appointment I had a question for her. If my tissue was frozen, would it still be viable? I then explained to her that in order to take back some control, I had come up with an exit plan. Simply, that I would walk out into the woods (it was winter) and lie down in the snow until I had frozen to death. I went on to say that I had given this a lot of thought. As the daughter of someone who had committed suicide (my first stepfather flew his plane into a cliff on his sixty-fifth birthday) I knew how devastating it was to have to deal not just with a suicide, but with one in which your loved one’s body is disfigured. That I felt my family would understand suicide under these circumstances (as a way to avoid suffering and a loss of control). That I had done some research and although I would be blue (and crystalized, kind of cool), it would not be like dealing with a gunshot wound or some other violent form of death. But I needed to know if frozen lungs would be ok.

I told you Alice can just roll with things. Her response? ‘I’ll have to look into it’.

Months ago I was interviewed for an article in STAT about the ups and downs of life (and death) when you are dependent upon targeted therapies. Bob Tedeschi was the reporter for the piece and the first time he interviewed me I told him my story about walking out into the woods. Bob, like Alice, is someone who just rolls with it. I am happy to say that I did not frighten him and that we have, in fact, become friends.

Bob is a tremendous writer and he is tackling all sorts of issues pertinent to end of life. His latest article is about rapid autopsies; hence my rather weird (but not if you know me) share.

It’s not easy thinking about our personal demise and harder still to discuss it. However, my own experience has been that the things we fear the most are those which we don’t understand. Talking about death–making it my familiar–has eased much of my personal anxiety. And as for those biopsies? I don’t want my personal contribution to medical research to end with my passing. I urge each of you to take the awkwardness out of this dialogue (for both family and your oncologist) by bringing it up yourself. Consider it part of your personal legacy.

21 responses to “A very personal legacy

  1. I too have lung cancer – non smoker-both lungs. Being treated at MDAnderson in Houston and am now a five year survivor. I have given a lot of thought to end of life options. One of them is not in a hospital hooked up to a bunch of machines. I am donating my body to a university medical school for research purposes.
    Anyway the “death with dignity ” option is the one that appeals to me the most. I live in a state that does not as yet have this option. There are about five states now on the website. When, and if I am told that my months to live are limited, I plan to take up residence in one of the states. There, with a physician ordered cocktail, on the day of my choosing, I will end my life. Being from the Deep South, Vernont is my first choice because I envision beautiful mountains, snow, winding country lanes etc. 😊😊

  2. As usual a poignant posting, Very good advice – It is a subject I would like to breach with family members. Not easy is it

    • No, it’s not easy. But I guess I look at it like the more we can take care of in this way while we are here, the easier it will be for our families when we pass.

      Linnea

  3. Hey Mary, one of the most difficult parts about our disease can be the lack of control over what is happening to our own bodies. I plan to own my death and it sounds as if you do too. I applaud you for researching this most personal of choices.

    xo Linnea

  4. Thanks for opening up this conversation, Linnea. It makes a lot of sense to me.

  5. I am totally in agreement with your statement and don’t find it weird one bit. I am also a lung cancer survivor of 5 years…I did not yet go that far in my thinking but happy and re assured that it could be a topic for discusssion. For a funny reason I feel a need to be buried but I have no issues having parts of me left behind. Thanks for bringing up the subject.:-)

    • Thank you for your comment. I have a need for part of me to go into the ground as well (back to mother earth, I guess) and I need to work on a way for that to be without embalming, something I also feel strongly about. And hey, congrats on that five year part.

      Linnea

  6. Thanks for the congrats! But it seems that I have slow progression and going back to pulmonologist and all that nice stuff in 2 weeks…like you I have BAC but not the ALK type…mine is adenocarcinom with predominant lepidic growth non-mucinous..(.most likely EGFR but not yet tested) .that is a mouth full…I much prefer BAC…anyway, this slow progression brought back all kinds of reflexion including my demise….being planted as a tree is appealing:-) Thanks for answering my comment….you were the very first hope for me back in 2011 and for that I will always be gratefull.
    Christine in Montreal

    • Christine, I hope all that nice stuff results in a solid plan. Yeah, mine is now called invasive mucinous adenocarcinoma. Big mouthful but not quite as big as yours. And hey, thanks for the kind words and keep the hope.

      xo Linnea

  7. These are important thoughts that you speak so well. I was a bit confused, but clicked on the link to Bob Tedeschi’s article anyway. Ah-ha. It is about “rapid AUTOPSIES”, not biopsies. Very interesting stuff.

    • Oh boy, I should have had you proof read! Sorry for the confusion but I am glad you clicked on the link anyway. Now I will go correct!

      Linnea

  8. Linnea, I thought I was by myself in ending my life when the time comes. Thank you for being so open. I never thought of donating my body or lungs to science. Great idea as we are in the process of changing our will.
    Katie

    • Katie, I would imagine we are not alone but it just really doesn’t get talked about—part of our (unhealthy, to my mind) cultural separation from death. Just because we have cancer we should not be expected to suffer and when it comes to that time, I will find another way. That’s great that you might consider changing your will per the donation.

      Linnea

  9. Hello Linnea, your share struck a chord with me. When I went through the winter of brain mets, surgeries and gamma knife sessions, I had plenty of time to come to terms with my own passing. Now, I have,to remind myself that not everyone has had the benefit of my experience, and death is very difficult for most people to discuss.I don’t want to die with tubes hanging all over me, either, rather, I envision a party in a right to choose state, maybe with my friends and family “roasting and toasting” me, and I, them, before I take the deep sleep. But i don’t believe we always get to choose, we have to be lucky.

    • Dora, you are right. We have had more time to think about passing then most; not just the manner in which we will pass but the opportunity to come to terms with it. That is, in a way that is not immediately obvious, an advantage of sorts. Of course, we would prefer to have not had this opportunity.

      Linnea

  10. Kristen Aliotti

    Brilliant as always. And to think I’ve been learning all this stuff about lung cancer when all I did was read something you wrote about Marfa, TX! – ha ha – Good topic. No, excellent topic! And thanks for sharing your ideas. xoxo (Have not experienced lung cancer issues in my family but 2014-2015 was a period filled to the brim with my 30-something daughter’s thyroid cancer; it did not follow the normal, easy pattern (when you’re lucky) of thyroid cancer but as of Cinco de Mayo 2015, cross fingers, all has been very nicely quiet! Anyway, thanks again. All topics with which we need to be comfortable talking! xoxo

  11. Kristen, I think we need to meet someday—it is simply too serendipitous that a search for Marfa led you here. Glad to hear that your daughter is coming up on a year of things being less eventful and oh how tough that must have been for you, as a mom 😦 So—one of these days—you, me—same time, same place!

    xo Linnea

  12. Such a great conversation to have. So necessary. So important. Thanks for for sharing this personal topic on your blog! xo Kimmy

  13. As my husband was diagnosed at Stage IV, the first thing he asked me was if he could pass at home. We were blessed to have the time to talk about everything. He did pass very peacefully at home in the middle of the night with only me at his side. I consider the corner of the living room where his hospital bed was to be Holy Ground. For the first few months I would sit there and try to breathe him back into me. I provided his dignity in death and it was the hardest thing and the holiest thing I have ever done in my life. I will never be that good again. However, I do respect everyone’s right to choose.

    Lovelovelove to you,
    Deborah

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