Twelve. And counting.


Twelve years ago today I was forty five years old, my youngest child was seven and I was sitting in a hospital bed. I’d been admitted four days earlier after several weeks of antibiotics for a walking pneumonia that just wouldn’t clear up. A CT scan the previous Monday had revealed a large mass in the lower lobe of my left lung and the differential diagnosis was recalcitrant pneumonia, fungal infection or a neoplasm.

I didn’t know what a neoplasm was but my husband’s face had fallen when my general practitioner spoke that word. After she left the room he explained that it was another word for cancer. We’d then driven directly to the local hospital where I was placed on IV antibiotics.

Those first days were awful. I was in a room with three other woman, one of whom was dying and another who’d had a severe asthma attack. As I lay in bed I worked incessantly on my laptop researching everything I could about lung cancer. One thing stood out–the dismal five year survival statistics–15%.

The day of my biopsy the patient before me was a prisoner, handcuffed to his wheelchair and accompanied by two officers. When my turn came the surgeon performing the procedure told me that it was highly unlikely that I, a young never smoker, would have lung cancer and that what he was seeing on the CT scanner looked like a fungal infection.

After the biopsy I had to lay very still for several hours without speaking so as to minimize the chances of a pneumothorax. This was difficult as one of the attendants was someone I casually knew, and she kept asking me questions. My lung did partially collapse, as it now has every single time I’ve had a biopsy.

On Thursday morning my doctor came to my room first thing. My husband hadn’t arrived yet and she stalled, telling me a protracted story about her daughter and some dramatic production that featured a field of sunflowers. She said “You know, a sunflower represents hope.”

When my husband entered the room my doctor got right to the point. “I’m sorry but you have lung cancer.”

I really don’t remember anything she said after that as both my vision and my hearing seemed to have suddenly constricted. I had this sensation that I was in an airplane and it was going down. My husband would end up having to call my family members–I was simply too devastated to speak to anyone.

However something incredibly fortunate happened later that day, something that changed everything.

I was assigned an oncologist, who spoke to me only briefly. That evening my husband called him with a question and this oncologist was incredibly rude. We decided that he was not someone to whom I would like to trust my care. And so my husband immediately called one of my dearest friends, whose husband was a surgeon, asking for their opinion as to a good doctor.

Her husband had done his residency at Massachusetts General Hospital, and he gave us the name of the thoracic surgeon he had worked under. And that is how I ended up at a major research center rather than a local hospital. Because of one rude oncologist. To whom I actually now owe a thank you.


25 responses to “Twelve. And counting.

  1. Prayers for your next years! Thank you for writing this blog. Your readers are blessed by your sharing.

  2. Happy Birthday! I know it’s not, but it has that kind of significance. I’m so glad that doc was rude! All love dear!

  3. As always, well written and truly an inspiration! Your strength and perseverance is something I’m so glad you can continue to share with the world!!

    • Thank you Anna. I’m glad that writing is no longer so difficult–that it’s beginning to come naturally again.


  4. Hi Linnea!! You are so open and kind to be sharing all that you go through. HAPPY BIRTHDAY!!! I tell all my family and friends about YOU. I recently have had three YOUNG women friends diagnosed with lung cancer. You and your story are always shared with them. What an amazing blessing for you and your family to be where you are today. Although I have NOT gone through your experiences, I do understand lung cancer. I am going on 9 years this June with no reoccurrence. Being monitored for several new spots on the other side of my lung, but not worried at this point! Your new dog is another blessing even if she wants to bolt!! Hey, I’m sure you would love to bolt at times too!!!! All my love, Linda

    • Thank you Linda. I am so sorry about your friends and wish them all the best. Nine years for you—fabulous. Keep em coming. xo


  5. Ive been following your blog for about 7 years and counting! You’ve been a sunflower to me! We met in Boston a few years back…and I sat with you at lunch and chatted a little about stuff and Camp Kesem! Wishing you many more years Linnea -keep up the hard work and as always thank you! xo

  6. A Branz -Spall

    Happy Anniversary

  7. Thank you for your blog.My husband has got alk positive lung cancer..unfortunatly crizotinib doesnt work any more .In russia there is no choice for him so he will definetly get into clinical trials

    • Best of luck to him Alina—I wish access to all medicines was equal. However, clinical trials have remained my best treatment option, because of timing.


  8. Wonderful! Bravo… My mother has recently been diagnosed with Stage 4 Adenocarcinoma of Lung, ALK+ Your blog is an inspiration to me. Thank You

  9. Belinda Scruggs

    SO SO HAPPY for you Linnea!!!
    I’ve followed you since my diagnosis in 2013. Even bumped into you at Dr. Shaw’s office one time at Mass General.
    You’re an inspiration to me and SO many others.
    Thank you for ALL you do!!!
    Keep living life.
    I’m trying to follow your lead. 😊

    Prayers for continued good reports and a full life!

    Belinda S

    • Thank you Belinda—I am just catching up to old comments after an eventful month. I would love to run into you again!


  10. Chris Van Burgh

    Wow! “Found you” from an entry on Lung Cancer Survivors. I have not been on there in a long time. Guess life with cancer kinda got “normal.” Anyway-in December I was also 12 years out from diagnosis and still in active treatment. Happy when I find others who are still kicking butt!! Congrats! (Chris in Wyoming)

  11. Your story shows great encouragement while I’m going through my own battle against this horrible curse. Your blog brings a lot of hope for me. Would you please share what types of treatments you went through? I would like to compare it to the type of treatments I receive here in my country. What stage are you on the scale of this disease?
    I wish you all the best,

    • Nani, I am stage IV and have had a variety of treatments—starting with a lower left lobectomy. That was followed by chemotherapy (cisplatin and taxotere). Then I went on tarceva (an EGFR inhibitor, before we knew I was ALK+) and then on crizotinib followed by lorlatinib, both while in trial. Then back to chemotherapy (pemetrexed and carboplatin) then back to crizotinib before starting lorlatinib in trial—the drug I am still on. Best of luck to you.


  12. Pingback: Blog - Health Stories Project

  13. Hi Linnea. Congratulations on such a milestone. My mom recently found your blog. She was diagnosed with NSCLC this year at 59, first as stage 1B, then stage IV. We are devastated, but hearing a story like yours gives hope, though I’m sure the road to 12 years has been anything but easy. My mom has been a remote patient of Dr. Shaw (we live in NC), but I am moving to Boston next year to start a doctorate, and I’m really encouraging my mom to relocate so she can receive full time care under Dr. Shaw, who seems really special in this field. If they do relocate, do you have any suggestions for local cancer support groups/other resources in Boston? Best wishes to you for a bright future.

  14. Linnea, this was a very inspiring blog. You are beating the odds. It gives me hope. Thank you for sharing.
    Shelly Allen

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