A few steps closer

We were in Mattapoisett this weekend for a dedication ceremony at the local historical society.  My mother-in-law, Polly Phipps, donated a nautical chart painted by the artist Clifford Ashley and the restored artwork was unveiled and celebrated for the jewel it is. This canvas mural had graced the ceiling of the ‘whaling room’ in the family home for almost a century, on a glassed in porch with a whale tooth for a doorstop and paneled walls where harpoons once hung (a number of which can now be found in the New Bedford Whaling Museum).

In addition to the cultural shebang and schmoozing with the family (my husband wryly noted that at least half the one hundred or so in attendance were related to him), we enjoyed time at the waterfront, lobster rolls, fried clams, a Chippi from Mirasol’s and a leisurely stroll through Ikea with Jem and Pete (sans David; he’s allergic to Ikea).

We needed to scurry back to Amherst on Sunday evening as David had to fly to Albuquerque on Monday morning and I had my weekly appointment at the Benson Henry Institute in Boston.

So that’s the garden variety news for the moment, but I’ve got a few things to report on the cancer front.

Sadly, Dr. David Servan-Schreiber, author of Anticancer, has passed away after surviving brain cancer for almost 19 years. One of his contributions to the literature on cancer was the facile way in which he broke down the science supporting his theories, making the information comprehensible and user friendly. I found inspiration in  both his holistic approach to disease, as well as his prolonged survival. Nineteen years was amazing; I would have wished him more.

And now two tidbits more curious than anything. First, researchers at the University of Oxford in England have announced that tall women are at a greater risk for cancer. In fact, for every four inches over a base height of five foot one, the risk increased 16%. Blimey. I thought adolescence and shopping at Shelley’s Tall Girl Shoppe were enough of a disadvantage. Of course, if you read the article carefully, smoking related cancers are not included (I’m not clear if that addresses those of us with lung cancer who didn’t smoke). Another study is mentioned which indicates that long legs are associated with an increased lifespan. So, there you go–it all balances out, and life really is fair.

The curiouser:  A molecular and cell biologist at UC Berkeley, David Duesberg, posits that cancer is actually an example of speciation, and can in fact be compared to a parasite.  It is an interesting if rather creepy concept but I feel there are more than a few holes in it. I also have a personal quarrel with this quote from oncologist Dr. Mark Vincent, another proponent of the view that cancer is an evolved species:

“I think Duesberg is correct by criticizing mutation theory, which sustains a billion-dollar drug industry focused on blocking these mutations,” said Vincent, a medical oncologist. “Yet very, very few cancers have been cured by targeted drug therapy, and even if a drug helps a patient survive six or nine more months, cancer cells often find a way around it.”

Excuse me? Six  or nine months? Ce n’est pas vrai! Leave the (billion?) dollar drug industry alone! Some of our very lives depend on said industry…

Which brings me to my final bit of news. On Monday Alice (Dr. Shaw) called to tell me that she’d already placed my name in queue for the Novartis LDK 378 and that two slots had opened up. If I were not to fill a slot, it was possible that I might wait several months for another chance.

I mulled it over for twenty-four hours. Physically my decline has been slow, but these things have a tendency to pick up speed and lately I am aware of building momentum.

When I emailed my affirmative  to Alice, she responded immediately in support of my decision.

That night I felt an anxiety lift that I hadn’t even known I’d been feeling. My sense of relief lasted until the following morning, when I really began to think about the implications of my situation. I felt a little bit afraid, and not so much about enrolling in a another phase I clinical trial, but about what would happen if I didn’t.

I’ve visited my mortality enough times now that you might think we’d become a tad familiar.

But no. I prefer to remain strangers as long as possible.

In a few weeks, I will be traveling down an unfamiliar path once again.  I’m hoping it leads to another miracle.

27 responses to “A few steps closer

  1. Carolyn Kersten

    Linnea, I suppose people have told you what great photographer you are! Thanks for sharing your talents.
    I also thank you for sharing your journey in fighting cancer. I’m proud of you! You are a strong woman. You will survive!

  2. HI Linnea..
    I love reading your blog and appreciate your openness and sense of humor too. I’m thrilled that you get to be part of a clinical trial, albeit Phase I. You’ve responded well in the past, so maybe your luck will continue.
    I was also very sad to read that Dr. Servan-Schreiber died; I loved his book and all that he shared about his cancer journey.
    On another note, my recent cat scan was all-clear once again (thanks to tarceva); it has been over a year. Tarceva is a miracle drug when it works ( you and I have different types of lung cancer, so I know it didn’t work for you.
    The bad news for me, however, is that I am so sensitive to the sun (because of tarceva) that I now have severe lip swelling/bleeding and a horrible rash. I am told I have to stay out of the sun which is torture for me as I love to sail, kayak, swim, bike…anything outside. We have been having such fantastic weather, it is torture to just sit inside and watch it.
    I guess I should be grateful for the side effects because it means the medicine is working to keep the tumors away…
    Nothing is easy when you’re battling cancer.
    I’m still hoping to see you at the Omega conference in September!?
    Laurie
    p.s. you might like to read my blog at lauriegeary@blogspot.com
    where recently I wrote a couple of interesting blogs about “dancing through cancer:’ one is about “Facing Death”…the other about “what to say to someone diagnosed with cancer…”

    • Laurie, sucks when the side effects are intolerable. I hope this passes and that you can get back to your incredibly active lifestyle. No Omega conference for me this year…maybe next?

      Linnea

  3. Whew. More miracles please.

  4. Linnea,
    I can’t tell you how often you cross my mind. My sister and I were just together for a week and we talked about you. About your wonderful spirit and how drawn I was to it and therefore to you.
    I will continue to pray for good results from this next round of treatment for you. I have had one infusion of Alimta and had very few side effects. For that I am grateful. Next scan is first of September.
    Sending all my love.
    Sara

    • Sara! Here’s hoping for a clean as a whistle scan. I think of you and your sister often as well. Wish we were all neighbors and could get together for a tea and chat. Here’s to more side effectless (not a word, but should be) infusions. Love, Linnea

  5. Waiting, uncertain future the hardest things to deal with in a cancersituation..I will cross my fingers for another miracle for you!

  6. I really like this post about the gathering,painting family and friends.Such life and love you bring to our sight.Have I told you I am so honored to have you in my life and that you share your family with us.About the trial,I think your right to follow your intincts.I am having bone scans,My usual Ct’s etc so onc can seee if we can change things for me on tuesday.So I will think of you my friend,AndiB

    • Andi, I hope you got some definitive answers and a direction in which to go on Tuesday. I am honored to have you in my life as well…feels as if we’ve known each other for some time now. Take good care…love, Linnea

  7. Linnea – I am an ALK+ patient diagnosed about a year ago and started Crizotinib 135 days ago. Scans so far show I’m responding well. I’ve followed your story since early on, when I first found it. You, and others who share, are just as important to me as my own Drs. This is just selfish of me because I have nothing to offer back to you besides encouragement, admiration, and in some crazy way even love, but please keep sharing as much as you can as you continue your new treatment. I hope you find that it’s not just new, but a thousand times more effective than what you so boldly undertook as “new” two and a half years ago. Ken_B

    • Ken, I just found your (unapproved and so dormant) comment. So, so sorry! It is such a sweet comment, too. I’ll take all the crazy love I can get! Hope you are yet responding; I am now two weeks in on the ALK inhibitor LDK 378, and I’m keeping my fingers crossed.

      Best, Linnea

  8. Joan Zimmermann

    Hi Linnea- Love all your recent photos- I particularly liked the two older fellas having a confab.
    Good for you, choosing the unfamiliar path. May this one be as successful and productive as your previous adventure- perhaps you will be leading the way, once again! I certainly hope so.
    Thinking of you,
    Joan

    • Joan, a confab. I like that. I’m hoping this path has some interesting scenery and yet sure footing. Thanks for the good wishes and thinking of you as well.

      Linnea

  9. Pat & Will Plattner

    Travel down that new path knowing that friends go with you, if only in spirit. We are rooting for you, as always.

  10. Your post had a huge impact on me at many different levels. I had to make sense of it for me. Firstly, by my calculations you will have been on crizotinib for almost three years. That’s 3 years of really living life… from flying airplanes, visiting Sweden to many many wonderful events with family and friends. That experimental drug has helped you (and many others including me) manage this illness much like people who manage other chronic illnesses. Dr. Vincent’s comments seem very nihilistic to me. And crizotinib is just the first stone in this “fast moving stream” we are crossing. I am firmly convinced that science has stayed many steps ahead of us and there are options now for the next stepping stone(s). I am optimistic for our future and believe you will find your next miracle.

    • Evie, absolutely do not be discouraged. Great strides are being made and yet there will always be people who discount extending life versus an actual cure; I just don’t get it. Sometimes I think ‘cure’ is a magical word anyway, and I am more than grateful for the past three years (some of the best of my life), when I was in fact hoping for a few months. If I spend the rest of my life hopping from one experimental treatment to the next, so be it. Life is life, and I’m grateful for every moment of it.

      Linnea

  11. Kathleen Gereghty

    You go Girl!!!

  12. My dear brave friend, constantly traveling those unknown roads. I’m glad you decided to choose that path again. Focusing all my hopes for a miracle for you. And yes, more of those strong hugs!
    Anja

  13. you know, I didn’t actually read the full article about the tall woman’s increased chances for cancer. so now I’m doing the calculations and I have an increased risk of 32%…. I think a career in chihuahua apparel is seeming more and more healthy!

    and I am so glad you are staring this trial, and we will all be here for you on the ride. (I bet Olive will give you good luck kisses)

    ❤ jemesii

    • Jem, ignore those stats. There must be something out there about the virtues of long necks and torsos…besides the fact that they are so very striking. Love you hon, Mom

  14. I find it hard to believe tall women are more prone to have cancer.
    But being tall it encourages me to make the most out of the apparently short time I have left on this planet 🙂

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