Going in

So tomorrow is the big day; my fifth needle core biopsy.

Rather like a space probe, the purpose of this procedure is to look closer; to learn more about the nature of my cancer so that we may make informed treatment decisions. 

My very first biopsy was the most memorable. Four days earlier I had heard the word neoplasm for the first time. In the days hence, I had read up on lung cancer. The statistics were dismal but my differential diagnosis had left room for other conclusions–a recalcitrant pneumonia or a fungal infection.

When they wheeled me to the biopsy room, the patient before me was a prisoner; cuffed and accompanied by two officers. The physician who performed the procedure first marked the point of entry with a black dot–a dark star of a tattoo. As he guided the needle between my ribs he studied the image on the CT scanner and remarked ‘I am almost certain this is a fungal infection. There is no way a young non smoking woman such as yourself could have lung cancer.’

Post biopsy I was to lie still without speaking for several hours. This was made more difficult by the fact that one of the attendants recognized me–she had been a clerk in a store I patronized–and she, apparently unaware of my restriction, kept trying to engage me in conversation.

The next morning my world turned upside down, when I learned that the radiologist was so very mistaken. Young, non smoking women such as myself could get lung cancer.

My next biopsy was almost three years later. It confirmed metastatic spread and I, a IB at diagnosis, was restaged to IV. However, we would also learn that I was positive for an EMLK 4-ALK fusion gene; ALK+. Four months later I went from having no options to enrollment in my first phase I clinical trial, for crizotinib.

Three years later, prior to enrolling in a phase I trial for ceritinib, I was biopsied yet again, in order to better understand my mechanisms of resistance to crizotinib. An acquired secondary mutation, S1206Y, was identified.

After progressing on ceritinib, I had yet another biopsy. The hope was that I would be positive for PD-L1, making me eligible as an early participant in a clinical trial for immune checkpoint inhibitors. Disappointingly, I was not, however it was revealed that I had now acquired yet another secondary mutation, G1202R. This particular mutation was more problematic than S1206Y, as it conferred resistance to all available ALK inhibitors and it was at this point that I returned to chemotherapy, carboplatin and pemetrexed, until lorlatinib (which shows efficacy against G1202R) became available in trial. Some of the tissue from my biopsy was used to attempt to start a cell line as well as build a mouse model of my cancer, but neither proved successful.

So, here I am, once again at a crossroads and seeking direction. Tonight I will sleep at my friend Diane’s house and in the morning she will drive me to MGH. I look forward to the anesthesia (yeah, I’m kind of a sensory freak and I’m not gonna lie, I like going under 😉 ) but I dread the part where you wake up with a dry mouth and then have to lie there unmoving/not speaking. If the biopsy is uneventful, I will go back home with Diane. However, every other time I have suffered a partial pneumothorax (collapsed lung)–a ticket to one night’s stay in the big house.

It is what it is. I am a traveller who’s had a long run on a clear stretch of road; for that, I am exceptionally grateful. Now it’s time to get my bearings and to figure out the best path forward.

xo 


43 responses to “Going in

  1. You get to go under? Wow, I wish. All 3 of my lung needle biopsies were done while I was awake, with only a little local anesthesia. They would not even give me anything to just help me relax a little. I was told that I’d have to be alert to carefully follow breathing instructions. I cried like a baby as soon as they gave me the go-ahead to speak after the last one. Best of luck to you in avoiding a partial pneumothorax—that hurts a lot. It only happened once with me. Much love to you. Thank you for writing this blog.

    • Molly, I always get twilight (after atigan—I can’t believe they don’t even give you that) but it is enough to knock me out at a certain point (I’m easy 😉 ) I am aware of the biopsy itself but then I just kinda slip under. And you’re welcome. It is a privilege to share my journey.

      xo Linnea

  2. Many of us will be thinking about you as you journey forward. You are the sky. Everything else is just weather.

  3. Thank you for sharing your journey. It reminds me that it is not always easy, but there is always hope. I will keep you in my thoughts and prayers. You got this!

    Shelly

  4. Linnea, I so admire your clarity and matter of factness when it comes to your situation. Your ability to express your feelings, both good and bad, your frustrations and your ethical questioning of big pharma and the role of clinical trial participants, somehow makes it easier for others who find themselves in the same boat as you.

    I know that you were both an inspiration and a reason for hope for my wife Suzanne when she was similarly afflicted. Her ride was much shorter than yours, but perhaps yours has been prolonged to give hope to the hopeless.

    Keep doing what you do and continue to find the joy in the life that you have.
    Good luck tomorrow. Wishing you the best.
    Ray Shefska

    • Thank you Ray. I am always humbled by the generosity of spirit in those who have lost someone to this disease and yet continue to walk this path with me—I am honored.

      xo Linnea

  5. sending healing vibes to you for a way forward….

  6. I hope the procedure is uneventful for you and that the results will reveal something actionable to maintain control as long as possible.

    And if you do need to stay in the hospital, I hope it’s just overnight and not for the eleven nights I had last time (which was worthwhile despite the discomforts because it was educational and in a weird way entertaining).

    Best hopes,

    Craig

    • Craig, eleven days is too many but I am glad you found it both educational and entertaining. In my own case I anticipate nothing but that potential minor complication—it has always been more about keeping me there for observation, that’s it. And actionable is what I’m hoping for. Beautiful word/concept, that.

      xo Linnea

  7. Dear Linnea,
    Please promise you will write and publish your book – your eloquence in describing your journey is so beautifully unique and always hits that damn nail on the head. You put my feelings into words for me! Our arms will all be around you tomorrow.
    Bless you,
    Kate

  8. Good luck, my friend!

  9. Thinking of you and wishing you the very best next step.

  10. Linnea, I have had the honor and joy of being your friend for a few years of your “Straight Road” journey. I have no doubts that whatever changes in that road might appear, if any, you will be able to stay on track, regardless of how that track may waver. I and numerous others are here to help you as best and as much as we can.  Sending you my Love and good Karma!

  11. I have been reading your last posts faithfully though I have not been responding, since it’s mostly been on my iPhone. This time I’m near a computer. Just taking the opportunity to say that even though I only know your from your (brilliant!) online posts, I am always thinking of you, admiring your talents, in awe of your courage and honesty. Right now, I’m with you in spirit. I wish I believed in prayer – (I would be on my knees saying your name!) – but I do believe in LOVE and am thinking of you with lots of that RIGHT NOW! (Do you remember how I found you? You were living in MARFA, TX! I was obsessed with Marfa at the time – a decade ago?? – and only later learned about your lung cancer journey! – i have learned so much and that knowledge will always be there to support myself, and my friends and family, in the future.) Buen viaje these next few days! xoxoxoxoxoxo

  12. Thinking of you Linda xx

  13. Sorry auto correct Linea

  14. You’re a warrior — sending positive energy from Montana.

  15. I wish you so much luck tmrw Linnea xx

  16. I am much, much earlier on the journey, but your courage is inspiring. Wishing you the best tomorrow. I will be at MGH myself tomorrow morning, bloodwork and checkup with Dr. Gainor. I hope your procedure is uneventful and I really hope they have more good options for you!

  17. Sending complete love xx

  18. Linnea, you are in our thoughts and prayers.

  19. Cristina Thorson

    Oh, boy… we’ll be thinking of you and and awaiting news.
    Much, much love.

  20. Karen cunningham

    Sending hugs and good thoughts your way, Linnea.

  21. Rooting for you, Linnea! Thank you for paving the way for more options for me and others who came after you. I pray tomorrow’s biopsy will go smoothly, reveal new possibilities and not wreak any further havoc on your body! ❤️ Greta

  22. I’m only just seeing this entry, Linnea (Friday PM). I had your biopsy on my calendar for Monday. That may sound creepy, but in some weird ethereal way, praying and rooting for you; following your journey, is somehow connected to Peter. A win for you, is a win for everyone ever plagued with this horrible disease.
    It’s almost certainly over by now, and perhaps you’re even able to speak by now. I hope that everything went well, with no collapsed lung!
    Now waiting for the results, is yet another torture to endure. I hope and pray that whatever the findings, you will transition to a new effective treatment with minimal side effects and years more of a generally good quality of life, with scans, only when absolutely justified! Fingers & toes crossed. XXOO

    • Not creepy,Jon, comforting. I love knowing you are out there and I do feel connected to everyone who has or who has had this vicious disease. Just want you to know that I let Alice and Jen know how you are doing and they send their love.

      xo LInnea

  23. Thinking of you!!

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