Personal skinny

I had my every six week oncology appointment yesterday. Echocardiogram, labs, and a consult with Dr. Shaw’s nurse practitioner Jen Logan followed by a visit to my social worker.

It was an opportunity to double back and clarify whether or not the way I perceive my current situation is accurate. And, it would seem, I hold no illusions.

In a nutshell. My cancer is yet ALK+, and therefore partially responsive to inhibition with lorlatinib. However, the two newly acquired secondary mutations are preventing the lorlatinib molecule from binding as completely as before. Hence, the resistance. And–unfortunately–these acquired mutations are not actionable; there is no effective inhibitor for either of them.

Fortunately, my cancer is not aggressive. Nor is it indolent–but after fourteen years, we have a pretty clear understanding of how fast it grows.

Simply put, barring any new developments, I figure two years.

That can feel like a little or a lot, depending on your perspective. And as I have already wrapped my head around a much shorter time frame (3-5 months) I can do this.

However, it is also important to remember that although I am talking about a probability, possibility is not out of the question.

To this end, Jen assured me that Dr. Shaw is reaching out to both chemists and researchers urging them to come up with a magic molecule. It could just happen.

If it doesn’t, we can try a combination therapy. However, unless there is some not yet identified synergistic effect, it is unlikely this approach would be successful for my increasingly resistant cancer.

Worse comes to worse, I could return to chemotherapy (this would be the third time) in an effort to abate symptoms and possibly stabilize the cancer.

As we finished talking about possible scenarios, Jen asked me if there was anything I was particularly scared of or worried about.

I told her that I was sad but not afraid. And still hopeful. As for worries, two things. I’m not crazy about the way I’m going to die. I’d like to remain calm and I understand that not being able to breathe is going to make me feel panicky no matter how much self control I exercise. But my biggest worry is my three kids. They are all grown-ups now (something I am so grateful I got to experience) and I know they’ll be fine but we’d all prefer to have their mom hang around.

It was hard but also good, to speak of the future and the potential lack thereof. Jen asked me how I keep my cool and I told her it was time and practice. This is not my first death rehearsal.


22 responses to “Personal skinny

  1. Prayers for the magic drug. A cure would’ve even better. Stay strong❤️

  2. You are an inspiration. My all best wishes are with you.

  3. gauravkantgoel

    You are an inspiration. My best wishes are with you.

  4. Keeping you in my thoughts! Life is definitely a challenge no matter what kind of problems. Mine was having a husband with dementia, which lasted for over eight years. Fortunately he knew me and our children to the end.
    I marvel at your strength!

  5. I feel that I have someone walking besides me and that is You. I have been on this lung cancer journey 2+ years now, ups, downs, life, near death. You seem to tell it like it should be told, not sugar coated because cancer is not nice, in fact it it probably if not one of the most fucked up thing that will happen to us. For now I am o.k. After my oncologist last summer telling me I probably only had a year to year and a half to live I was matched to 2 immuno drugs and after 5 months my lung tumors are “resolved”. I still need a year and a half more of immuno and 12 week PET scans so I am not celebrating, been there done that and then after successful radiation cancer reappeared. I , too, think about death and how it will be and I also think of my grown children and how it will hurt them to not have their mom around.
    I hope your oncologist (and all the other doctors and scientists that play a part in keeping us alive) can come up with another life prolonging treatment for you.
    Linda Cunha

  6. You are very strong. Stay like this.
    By chance do you practice meditation? This can help calm the mind down, and also there is a believe that practice can heal psychosomatic diceases. I really recommend to learn about vipassana. Just give a chance this might be not only physical matter. Really interesting to hear from you. And sorry if this question will bother you.
    Kind regards from snowy Tallinn

    • Ivan, this question does not bother me at all. I learned transcendental meditation when I was nineteen and it has stuck. However, I am always learning. Buddhism has provided guidance for me, I shall look more into vipassanna. And thank you.

      xo Linnea

  7. Before my unimaginable diagnosis, I would have read this post with an entirely different slant, different kind of empathy(obviously), today I totally get it. I hear you, have the same kind of sadness and concerns…. not ready to die damn it!

    • Nancy, we are seldom ready. That is part of what makes life so special–our reticence to leave it.

      xo Linnea

  8. L. I’m not going to offer anything here that you don’t already know, but I offer it as a reminder. You know how far we’ve come in lung cancer treatments in the last 10, 8, 5 and even 2 years. Just the accomplishments in the last year have been amazing. So, you know that you’ve needed to be on the bleeding edge of that research for your entire time dealing with this awful disease, and that your participation there has been what has kept you with us all these years.

    I don’t know of a next step beyond lorlatinib, but I doubt I would have known about lorlatinib a year before you were trying it either. But, and this is a huge but, there are now far more people actively working in lung cancer research than there were just five years ago! It’s a crazy cycle, but more success in research brings more funding, and more funding brings in more researchers!

    So, I won’t claim to know where you’re at emotionally. When I was told that I might have 6 months – maybe 9 – I know it was a mix of emotions, but mostly it was just sad. And there was so much value in having someone I could honestly talk to about death and dealing with its approach. But, like you, I had had my brushes with it before, and had managed to eek my way past it each time, so the conversation was less desperate than it might otherwise have been.

    So I offer you the reminder of hope. 2 years is becoming a long time in lung cancer research, and there are so many more possibilities than there once were.

    Like so many that follow your posts, and so many that call you friend, I’m here if you ever need me. And you remain in my thoughts and prayers daily, though I sometimes don’t know why I continue to pray, or who I’m praying to.

    It’s Ash Wednesday, two of my girls and I will be walking into a service in a few minutes, and you’ll be in my prayers there. And I’ll light my candle and include you in that prayer as well.

    Hang in there little sister.

  9. We are going to Italy in May and either before or after Portugal and we will make some ridiculous and lovely art while we are there. We will share energy, eat glorious food, drink magnificent wine see absurd reliquaries, be serious and silly and conspire. These are givens are they not?❤️✊🏼

  10. To one of my oldest friends. Really happy to hear of your success. Every day is a gift and I wish many more for you.


    • Mike, how wonderful to hear from my 5th grade boyfriend. Elephants, hole punches, roller rinks. I think the last time you saw me it was a bitterly cold night in college and I was wearing a silly groucho marx nose and glasses to keep my face warm. You recognized me by my very long legs. You were an important part of my youth–thank you.

      xo Linnea

  11. Sandra Domenichini

    Hi Linnea, this is Sandra from Italy. I’ve read your latest post. I don’t want to seem lame, but you know I’ve read all your blogs, and a few medical/scientific books in the past, and let me pass this message on to you: a two years window, for Research, could be (and hopefully will be) enough time. In the meanwhile, you’ll do what you’re best to: live and love! A big hug to you. Sandra

  12. Bonnie Addario

    Linnea……sobering and heartfelt. If we all lived every day like we are dying imagine what a beautiful world it would be!

    A dose of HOPE. More new drugs have been approved in the last few years than the last five decades! Researchers are full of hope and excitement about the future. More are joining lung cancer research because it is leading the way in innovation, genomics, artificial intelligence and more.

    Love to you and Thank You for your beautiful and thoughful words.



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