And this is on a good day

I’ve been out of control the past few months—driving, flying and riding trains. Taking care of shit and visiting folks. Having adventures. Tying up loose ends. And damned if it isn’t fabulous that I have the energy to do all this.

PF-06463922 has been my drug of choice (makes it sound a little bit sexier, no?) for more than seventeen months now and my cancer remains stable. That’s the longest I’ve ever gone on a therapy without progression and continued stability is my new mantra. The troubling side effects that I experienced initially have mostly disappeared although time management and memory remain a challenge and the neuropathy in my hands and feet is not going away. Some days I feel like I’m living with a very young child and someone who is elderly—they’re both me.

I am sharing my latest radiology report to lend some perspective. As I look so very healthy, (healthier than most healthy folks) it’s easy to forget that since the beginning of this journey (April of 2005), I have never been cancer free. That’s right—removal of my lower left lobe and four rounds of cisplatin and taxotere was not enough to push this crud out of my lungs. Since then I have always had a varying degree of cancer hanging around. At the moment, the situation is pretty good but this is what a good day looks like:

Lungs and Airways: Central airways are patent. A 1.9 x 2.8 cmlingular subpleural opacity and 5 mm subpleural right upper lobenodule (image 40) are unchanged from 10/7/2014. Several 3-4 mmpulmonary nodules are unchanged from 10/7/2014 and are found in theright upper lobe (image 29, 37, 46, 52) and left upper lobe (image45, 54). A 5 mm subpleural anterior right upper lobe ground glass nodule (image 48) is unchanged from 11/19/2014. Subpleural ground
glass nodule in the anterior right upper lobe measuring 6 mm (image
45) is unchanged from 10/7/2014. A 4 mm superior segment right lower
lobe groundglass nodule is unchanged from 1/19/2014 (image 43).
Additional left upper lobe groundglass nodules measuring up to 6 mm
(image 50) are unchanged from 10/7/2014.

If I was just being diagnosed we’d all freak out. As it stands, this is a great report.

My cancer and I have been sharing the same body for almost eleven (known) years now—that’s 1/5 of my lifetime. Wrap your head around that. During that time I have been to the edge of possibility and back again, a looping cycle of dying, hope, disappointment, loss, more hope and a whole lot of living mixed in.

It can be a real mind fuck.

The Boston Globe has a new online medical magazine called STAT. I was interviewed (print and video) for an article about the emotional roller coaster faced by terminal patients who are given the opportunity to try high risk experimental therapies. Clinical trials offer hope (our favorite word) but responses are not guaranteed and when they do occur, are of unknown duration. All that uncertainty can really mess with your head.

http://www.statnews.com/2015/11/04/for-cancer-patients-breakthrough-drugs-are-saving-lives-but-wrenching-souls/

28 responses to “And this is on a good day

  1. I watched the video last night on the eve of another clinical trial appointment, and it resonated strongly. I especially identified with your experience when you talked about your daughter. That is what brings me to tears – the truncated time I will likely have to be with her and see her adult life unfold. Thank you so much for sharing your experience.

    • Anita, that part just never gets easier. However, more and more I think of time as a continuum. My father has been gone for ten years now and yet he is as real as ever for me; the same is true for my mom. I believe that those we love live on in our hearts and it will be true for our children as well. That offers me some comfort.

      Linnea

  2. Linea, I continue to be awed and inspired by you. Our journeys are very similar and I’m also an artist. I’ve been fighting this beast for 5 years. The mental challenge and uncertainty far outweigh the physical part. I raise to you and your courage!

  3. So happy you are doing well.  Thanks for the report.  Sending lotsa love.

  4. Linnea, so glad to hear your good news… You are always in my thoughts.

    LDK378 (ceritinib) seems to be coming to the end of its usefulness for me. I have 2 new brain mets in frontal lobe and appearance in lower left lung.. I’m being scheduled for stereotactic radiation but continue with LDK And see where it brings me. So fighting on…

    You continue to be my inspiration and I vow to see my children grow up.

    Stay strong and enjoy life, you so deserve it.

    Sending a huge hug, your inspire friend.
    Simone x

    • Simone, I am sorry to hear about the new mets but hopefully the trial I am currently on will be an option for you as well. Stay strong my beautiful friend!

      Linnea

  5. Hi, Linnea, I saw your marvelous article online last night and then today in the Globe. Thanks for talking about this conundrum we face — I haven’t seen anything else from this perspective. I sent it on to my nurses at DFCI. Thanks for this post too!

    Also, I grew up in Lowell and now live up at Hampton Beach. I’d love to visit your store and meet you! What is the name and where is it? I come to Lowell once a month or so, to visit aunts, uncles, my niece and her new baby, etc., and would love to stop by. Thanks, Deb. (I tried to send this as a direct message on Twitter, but was unable to)

    Kind words can be short and easy to speak, but their echoes are truly endless. ~Mother Teresa

    >

    • Deb, it would be fabulous to have you come visit. My ‘shop’ is called the House of Redemption and it is in the Western Avenue Studios (#113).

      Linnea

  6. You are so lovely, Linnea! Thank you for being able to express the ups and downs, and the anxiety accompanying us, also when we are enjoying “stable”.
    Strong hugs for you,
    Anja

    • Anja, I am ready to collect one of those hugs in person. Any chance you and Ingo are coming this way in the spring? ❤

      Linnea

  7. Hi Linnea, so glad to hear your latest scan shows you as stable! It was a pleasure to be able to meet you, though I think we could enjoy lunch a lot more than meeting for scans!

    You are my hero, I had more shrinkage, Opdivo appears to be working for me & I keep thinking ” somebody has to be an outlier, why shouldn’t it be me? ”

    The uncertainty of this illness and it’s treatments can be maddening. I am using CBT to help me cope. I also force myself to put cancer away for the day to focus on pleasant things. I can’t paint ( you do so beautifully) but I sure can review a phone & use my social media voice to advocate for us all.

    Hugs to you!

    • Jean, keep on advocating! I love shrinkage and outlier is a fabulous status to aspire to. No reason we can’t schedule lunch sometime.

      Linnea

  8. I still read your blog, even after he’s dead, because I want to know. It’s funny how words like subpleural opacity, cisplatin and taxotere, ground glass nodules and so many others become part of our regular vocabulary over time. Then, after he passed, I did everything I could to erase them from my mind, as though somehow making the words go away will make all the bad stuff go away.
    It didn’t (doesn’t) work.
    I am amazed that you are doing so well. A testament to you & your strength & determination, as well as the crap shoot of experimental medicines.
    I am happy for you & your continued success at keeping the big bad wolf at bay.
    Love, hugs & healing alway~G

    • Hey G, I know it must be difficult—I am talking about uncertainty and yet I am also so fortunate—something I am only too aware of. Crapshoot is right and there is no algorithm to predict response. I am determined but so much of this is luck.

      Linnea

  9. Hi Linnea, Your story is my story too. I am always inspired by your courage and strength and hopefulness. You articulate, so well, the emotions and trials for those of us on a Stage IV cancer journey, especially the fears and the sadness. Thank you for being the voice for all of us – articulating what it’s like to live with terminal cancer. I also try to be a voice and an inspiration for others since I am living remarkably well – so far – with lung cancer. Just last Sat. I spoke on a panel at MGH about my experiences (diagnosed in 2008). Now on my 2nd clinical trial for the EGFR mutation, I’m thankfully told there are more treatment options if it doesn’t work. Anyone interested in my story (to see video clips from the conference) can contact me at or read my blog: http://www.ingearcoaching.com/blog
    sending hugs to you, Laurie

    • Laurie, that is so cool that you spoke at MGH—and boy do you look great (you’re not really 70, are you?). May stability reign for you as well but it is good to know that you have options. Hugs back and let’s figure out a time to reconnect.

      Linnea

  10. So happy you are doing so well. Unchanged is a great word to read on a radiology report, isn’t it? And, life continues to happen as you know but as one person said to me long ago, circumstances are fluid, always changing. Sounds like you got through some unpleasant issues and are stronger than ever in ways you never expected. Continue to live life and enjoy.

    • Cheryl, my favorite is unremarkable. Only in cancer would unremarkable be a good thing and progress bad. My life has gone down paths I never could have imagined and I’ve just come through a tough patch. To life!

      Linnea

  11. Glad you are stable. Very nice interview. Thank you for sharing. All the best!

  12. This certainly does help to put a “good day” into perspective, Linnea, especially for those of us that have not had the opportunity to deal with the enormity of your situation. Thank you for sharing. The video was so well done, your incredible attitude and wisdom shine through. I am grateful to have the opportunity to learn from you.

    • Hey Robin, good to hear from you and to see the face behind PeopleSense. Matthew Orr shot the video and he did a fantastic job—I love that he captured the bees! Thanks for hanging in there with me even though I’ve been so inconsistent writing.

      Linnea

  13. I know how you feel.
    I am a singer. I certainly didn’t want to get this diagnosis. Supposedly, I am OK now. However, there is always that uncertainty now, and it definitely wears on the mind.

  14. Your are absolutely right. It is hard not to think about it. At the same time that this happened to me, a friend (who sang with me in the Washington National Opera) was diagnosed with Triple Negative Metaplastic breast cancer. I had never even heard of that before! She went through surgery and chemotherapy, but the outcome was not so good. She just found out that the cancer has spread to her brain. She was on the local Fox 5 news a few nights ago, tearfully saying what her one wish is (which is focused around her young son). I sat down and cried. Cancer is so fearfully unpredictable! After all that she has been through…to get this harsh diagnosis now. This troubled world needs this beautiful voice. If you want to listen, video is posted here: https://www.gofundme.com/katekeem

    • Mary, I am so sorry about your friend but am hoping that they can go after that cancer in her brain. It is a frightening disease; in large part because of the fact that it is so unpredictable. Thank you for sharing the link to the video.

      Linnea

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