A scan and a plan; but first, a tribute

I had a message from Beryl, Guillermo’s wife, this morning. Guillermo Berazadi passed away on Wednesday morning July 13th. His wife and two daughters were by his side.

Although I have known for several weeks that this was an inevitable conclusion, I am beside myself.

Guillermo’s first contact with me was ‘I like your blog and I like you’. It was mutual, as I fell in love with this man of insatiable curiosity, humor, and zest for life. Guillermo’s comments were little novellas, and as he shared his own remarkable story, Gil built a devoted following. When he was silent for too long, I would receive personal emails inquiring as to his well being. I would then harass him (he like playing hard to get sometimes) until he burst forth with some fresh brilliance.

I am glad Guillermo is no longer in pain, but I shall miss him so. My life has been made richer by his friendship. I take comfort from the wise words of Stephanie (a member of the Guillermo fan club):

“G – as always, believe there is solid ground beneath us or that we learn to fly as we take that next step.”

Rest in peace, my friend.

And now, my own update.
Slight further progression compared to my scan of two months ago, however, rather significant progression in general. In other words, slow but steady.

As Alice (Dr.Shaw) said; she would have preferred stability, (oh hell, let’s just go for remission), but at least it’s not galloping. And, we now have a menu of options.

As my performance level is still very good, Alice would like to keep me on crizotinib until we know that it will receive FDA approval (for which it is currently being fast-tracked) that way, should other treatments fail, I have the option of returning to crizotinib (as it would seem to yet confer a partial response).

Once approval is certain, I would get in queue for a trial of Novartis’ LDK 378, the first second generation ALK inhibitor. LDK 378 is administered in tablet form, is a very selective inhibitor and exhibits five times the potency of crizotinib. In addition, a model of my mutation in the lab (from the cell line started with material from my last biopsy) was sensitive to this particular ALK inhibitor. So, it is very promising.

Another experimental drug from Novartis, AUY922, an HSP-90 inhibitor, remains an option as well, but would involve weekly infusions and possibly broader side effects. Although not specific to ALK mutations, my  secondary mutation model again showed sensitivity to this particular HSP-90 inhibitor in the lab.

So, on the one hand I am sad to be going down this path again, but I am also mindful of the fact that this time I have a compass, a map and Dr. Shaw by my side.

I will close today’s blog with some photos from an excursion I undertook last weekend with my friend Julia, to Strawberry Banke in Portsmouth NH. We had a wonderful time and I was much taken with one of the displays; an old home preserved in a marvelous state of decay. Just a reminder that there is beauty everywhere, every day, no matter what.

25 responses to “A scan and a plan; but first, a tribute

  1. HI Linnea….
    I also just lost a very good friend, Rheua, to cancer (lymphoma), so I really resonated with your recent blog. Rheua got diagnosed after I did with CLL (Chronic lymphocytic leukemia) which people can live with for years (“chronic”), so we certainly didn’t expect her to die before I did (with stage 4 lung cancer). But she went out with grace and dignity and quite peacefully. She told me she wasn’t afraid and was grateful that she had lived a full and meaningful and happy life. That’s all we can hope for, I think. She was a wonderful role model to me and helps me be less afraid of my own death, which will probably be sooner than later (altho right now, like you, I’m living with cancer).
    I’m sorry to read about your recent “progressions” but it sounds like there are many options you can try….so there’s always hope..
    I do hope you will read my most recent blog (not posted yet, but soon) where I reflect upon facing death. (search lauriegeary@blogspot.com – “Dancing through Cancer”)
    I love your blog and am so appreciative of all your inspiring, hopeful words…and admire your courage and resolve.
    sincerely, Laurie

    • Laurie, I’m sorry about your friend and I will definitely check out your blog when it’s posted. It is a difficult subject matter, but like all things, familiarity makes mortality less frightening, and therefore it is important to consider.

      Linnea

  2. Pat & Will Plattner

    Where there is life, there is hope, so you keep plugging along, you hear?
    So sorry about Guillermo. I read a quote recently that said, “We may meet only briefly in life, but if we touch each other with stardust…then that is everything.”
    We could all use a little stardust…catch ours..it’s coming your way!

    • Hey guys, thanks for the sentiment and the great quote. I’ll keep reaching high.

      Linnea

    • Pat and Will always have such a wonderful way with words so I’m just going to say that I’m tossing stardust your way also – thinking of you and the family often – love to all

      • Amy, a funny thing happened in Meredith today. We took our milk jug of change to the bank (bets placed were for 183, 200, 210 dollars–it was actually 344.35…) and we saw you come to the door and try to enter–it was after hours. OOps–I can’t believe we were the jerks to bring a jug o change just as they were closing (after all my years of waitressing and dreading those parties of ten, five minutes before we closed)…they (the bank staff) were exceedingly pleasant none the less (and even engaged in some betting of their own–being professionals, they were not as far off the mark as us) but WE were disappointed that you could not gain entry and give us a hug 😦 Maybe next time.

        Linnea

        yet your neighbor in heart

  3. Linnea,
    I’m sorry to hear Guillermo’s passing. It’s always heartbreaking to hear another one of us retired from the battle.
    On the other hand, I very much liked your game plan for your future treatment. LDK378 is 5 times more potent than Crizotinib!? Wow!! Sounds really hopeful.
    Lastly, I admire your photograph-taking skill to even make parts of an old and decayed house looking cute and pretty in the picture. When you come to visit me on the island, you’ll probably find interesting things in and around my old and decaying house to take pictures of!

    • Yuki, thank you on all counts. Hope is important and I do hope that someday I will get to visit your (picturesque) home.

      Linnea

  4. I feel sorry for your friend. Losing a person who you got to know , respect and learn from.. If we meet people with the same disease and got to know them, it is hard to realize the chance is big we will lose them, or they will lose us.
    Your plans for further treatment seems promising!

    Love caroline

    • Caroline, Thank you. I hope you are doing well; you are one of those people I’ve had the pleasure of getting to know.

      Linnea

  5. Dear Linnea,
    I’m so sad to hear of Guillermo’s passing. But I’m convinced he learnt to fly with ease and grace. There are so many fascinating and beautiful people we wouldn’t have met (like YOU), unless we’d been struck with this disease. But the loss of the friends we make on this journey is so hard.
    You and Alice seem to be a well-tuned team, and you seem to have a plan – I’m glad! So now I’m cheering on the FDA – they are welcome to do the galopping any time! – so that you can get started in a trial soon, and still have a good fall-back.
    Strong hugs for you!
    Anja

    • Anja, thanks for (more) of those strong hugs. If anyone could fly, Guillermo could. And yes, I am constantly amazed by the wonderful people this terrible disease has brought me together. A true blessing (disguised as it is).

      Linnea

  6. Dear Linnea,
    I am so saddened to hear about Guillermo. I felt as though I had a window to his soul through his writings…and it was indeed beautiful. The power of the written word is amazing and I felt that he “touched me with stardust” too and happy that I got to know him through your blog. I will miss him.
    As for your treatment plan, I wish you the best. Needless to say I am following close behind you. So thank you for all the information that you share in that regard. Thank you too for your beautiful posts and the wonderful caring community that you have created for all of us. It means so much.
    Evie

    • Evie, I will miss him as well. He added a magic to this experience of blogging that was entirely unexpected and I’m glad he found a forum on which to share with an appreciative audience. He will not be forgotten.

      The future looks ever more hopeful Evie, as evidenced by the very existence of not one, but two (and counting) reasonable courses of action. As always, thank you for your kind words and your presence; they both mean worlds to me.

      Linnea

  7. Farewell Guillermo. I also said good bye to a acquaintance this week as she succumbed to this disease. Bea had a great, husky laugh, a wicked sense of humor, and a soft spot for the many dogs she rescued.
    As for you, I am so glad you have Dr. Shaw there keeping you apprized of these new trials and maintaining your very good performance level. We have too many more small conversations to continue – it may take us decades!
    I paraphrased from this poem (supplied by the blog of a young acquaintance being treated for NHL):
    EDGES

    When we walk to the edge

    of all the light we have

    and take the step into the

    darkness of the unknown,

    we must believe one of

    two things will happen – –

    There will be something solid

    for us to stand on,

    or we will be taught

    how to fly.

    – – Claire Morris

    • Stephanie, I’m sorry about both our friends. Let’s keep talking and no disclaimer (or attribution, as it may be) was necessary. You have a beautiful way with words.

      Linnea

  8. Linnea, I am so sorry to hear about Guillermo’s passing. It is indeed the risk we take with loving; and while the loving is well worth the pain, the pain is still something to be reckoned with. I really like the quote Stephanie wrote here. It is something I will hold onto in my continued grief with missing Silas. I am also sorry to hear of the progression with your cancer. As you mentioned, you are in good hands with Alice Shaw, and your options sound promising. Always good to have options, and to know that your cancer has a good chance of responding to these treatments is something to keep in mind. Meanwhile, take time to grieve the loss of your dear friend, and be good to yourself. A woman in my grief group, who had lost her daughter of 21 years (her daughter was born with profound physical challenges); wrote something about strength and I wish I had her exact words. Well intended people were telling her to “be strong.” She wrote something to the effect that strength looks like many different things; in fact, some days it may look like finding it in you to get out of bed and make yourself a cup of tea. I don’t know if I have shared this with you before, but it struck a chord for me. Although it seems clear that not much slows you down. The work you continue to do is amazing and I am grateful for the progress you have helped create around breaking the stigma of lung cancer. Hang in there my friend, much love is being sent you way.

    • Lorraine, thank you. There was a time in my youth where I insulated myself against hurt by affecting an attitude of not caring. It was a misguided effort, and in truth, caring is simply part of who I am. It always carries the risk (or perhaps the guarantee one way or another) of hurt, but I can no longer imagine any other way. Love begets more love; and is an intangible not bound by mortality; it lives on in our hearts.

      I can relate very well to the tea story too. I was at a group for people with cancer a week ago, and one of those present protested that people with cancer weren’t brave, because we really didn’t have a choice. True, but I tell you what, just getting through the day sometimes requires actual bravery; something I know you are no stranger to. I am not one to dramatize a situation…but to go on living in the face of fear and hurt, to try to make something good out of what is handed to us; that sometimes requires incredible courage and I feel we can all feel proud of our efforts to that effect.

      Linnea

  9. Joan Zimmermann

    Hi Linnea- I am so sorry to hear about Guillermo’s passing. It is clear that you shared a wonderful friendship, and I looked forward to his posts just to hear what he would say to you next. It was lovely to witness a wooing of two mirrored souls.
    I am very glad you have solid options on the table for the next plan of attack against your disease. I have every hope that you will continue to do well for a very long time to come. How about a whole lifetime?

    Unfortunately it appears that we are past the point of options for my husband, who is now in hospice care. There is no expiration date stamped on his posterior, however, so we cook, clean, fold laundry, do needlepoint (well that would be me, not him). Beyond his immobility problems, his mind continues to shine, and he does remain employed while housebound.

    I think of you and Guillermo when I think of shining minds.
    Best to you,
    Joan

    • Joan, I am sorry for the lack of options, yet admire your attitude regarding the lack of expiration date. Carry on, and may your husband continue to polish that shining mind. You are, for me, an example of a wonderfully optimistic soul in a world where such a viewpoint is sometimes rare. Keep polishing that as well.

      Linnea

  10. Hi love,
    I think you meant July 13th, not June?
    Such a loss transcends everything we relate to day to day; you know what I mean? So strongly? The irony of his passing is so poignant. It is his perspective on the fullness of life…cherished…that resonates so strongly. Let this spirit of his swallow us all up and take us for a long, long ride with him at the helm…hold on tight!
    Love, David

    • Dear traveling husband, thanks for the fact check 🙂 We will miss the ‘read alouds’ of Guillermo’s comments and the joy, humor and delight he added to our lives. So happy that we had the privilege of knowing him and we shall keep his (spirited) spirit within our hearts.

      Love, Linnea

  11. I’m glad the list of options for your treatment is getting longer and not shorter.
    I’m sorry that you lost your dear friend.

  12. I’m sorry to hear of Guillermo’s passing. His writings were filled with tremendous insight & sincerity. I try to make sense of all this disease, but I’ve decided to focus on being thankful for the time I’ve spent loving, fighting, laughing with all those afflicted with this disease.

    My father died from lung cancer last year. My mother was recently diagnosed with lymphoma. She had a radical nephrectomy and the pathology determined that it was not kidney cancer but lymphoma.

    But, she is determined to fight and live.

    I’m glad you have new options. I’ll continue to root and support from afar.

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