Has it really been that long?

I can’t believe my last post was on March 7—I knew it had been awhile since I’d written but yikes! I would like to apologize to those of you who may have worried in the absence of an update. The good news is, it’s all good news!

Way back in April I quietly marked the ten year anniversary of my diagnosis with NSCLC. That’s right; a decade. I am absolutely understating when I say that I never, ever thought I’d live this long. Heck, my oldest child is thirty now and my youngest turned eighteen in April. I’m fifty-five—old enough to qualify for a senior discount at the Salvation Army Thrift Store (a privilege I don’t let go to waste).

Speaking of kids, my oldest son August came for a wonderful-if-too-brief visit in mid May and I had the pleasure of all three of my children’s company for a blissful 24 hours. We threw a party in my loft and celebrated any number of momentous occasions.

Peter, Jemesii, Linnea, August.

Peter, Jemesii, Linnea, August.

I’d also like to do a little bragging about my other two children: Jemesii manages a store on Beacon Hill called December Thieves—they just received Best of Boston and Boston Best Awards. And Peter is interning at the Koch Institute this summer—doing research on pancreatic cancer! Proud, proud mama.

May was also the month that my excruciatingly painful, protracted and expensive divorce proceedings culminated; everything is signed, sealed and submitted and will be final on September 1st. I shall write a bit more about this particular part of my journey at a later date. In the meantime, I am just so happy that the most difficult part is over with and that I can turn my focus to other things.

Fortunately, I am feeling really, really well (more than a year of stability on the PF-06463922 clinical trial) and my physical energy is generally exceeded only by my creative energy. I’ve got so many projects in the works, and one of the biggest is The House of Redemption: my combination studio/second chance clothing venue. I’ve been working behind the scenes for more than a year now, but the doors shall (actually! really! finally!) open on July 31st. Inside will be a splendid selection of both vintage and fine used clothing and accessories—as well as an artist (me) painting away in the back of the shop. More details and photos to follow!

Home of brave new art and second chance clothing.

Home of brave new art and second chance clothing.

In some ways I feel as if I am experiencing an unprecedented personal renaissance. The art school atmosphere of the lofts is a big part of why—this community is creative 24 hours a day. Much interaction is delightfully spontaneous—conversations, meals, sitting around an outdoor chiminea. There are also movies, parties, museum visits and gallery openings. And it’s not just about art—If we are in need of something, a request goes out on the community email (a ride, a pet watched, an extra pair of arms). If we have something to share with our neighbors, a similar email goes out. Frequently I come home to flowers (Rufiya!), some food treat left outside my door or an invitation to dinner. Sometimes I feel as if I have found my Oz (as in, Land of).

I am also doing my part to maintain good health by staying active; walking remains one of my essential pastimes. I am always shooting photos on these jaunts (my camera being my iPhone!) and shall soon be printing and displaying a large number of these images on the wall outside my loft.

Pipe dreams

Pipe dreams

In addition to exercise, I pay careful attention to how much I sleep. An interesting side effect of this therapy is that at higher doses it seems to induce a state similar to sleep deprivation, which might explain some of my cognitive challenges early on. At this lower dose I have few troubling side effects (neuropathy and some arthritis—still to be determined if the latter is drug related). However, I do require a lot of sleep—a minimum of ten hours nightly.

I am also increasingly mindful of what I eat. Sugar and white bread are for special occasions only, meat is kept to a minimum and vegetables rule. I have a plot in a community garden and a raised bed here at the lofts as well, so the salads I eat each day are grow your own.

Writing remains my greatest challenge; sadly it no longer comes easily. However, I am well aware that there is only one way to get over this hurdle—put one word in front of another.

67 responses to “Has it really been that long?

  1. Donna Giardina

    I was just thinking about you, Linnea. I’m so glad that you are doing so well with your new treatment!

    Take care from a follower in Colorado,

    Donna G.

    Donna Giardina Graphics/Production Coordinator work> 303-443-8696 x104 cell> 720-841-3943

    etown ~ building a better world through music & ideas http://www.etown.org

    >

    • Thank you Donna, and say hi to Colorado from me!

      Linnea

    • Thank you so much Linnea, for being brave enough to document your thoughts and experiences and put them ‘out there’ world-wide. I’ve just come across your posts while researching the clinical trial that you’re on. My newly-diagnosed husband has been offered a place on the trial because his cancer has the Ros1 genetic mutation and we are deciding how to proceed, as he’s had no treatment as yet. Your experiences have really encouraged my husband to give the trial a go, first up. He’s actually gone to bed smiling for the first time in weeks! Congratulations on ten years of courage and perseverance and giving others hope!

      • I am so sorry your husband has been given this diagnosis but tell him to stay hopeful. The only other comment I might make (and I am not a doctor) is that given the fact he has had no treatment yet, he should ask if it might not be smart to start with crizotinib (Xalkori) which is available by prescription. I have friends who are ROS-1 + who have gotten several years of stability from crizotinib. I would ask the rationale for starting with a trial versus using what is available by prescription (I look at it like you want to use every tool in the shed). Every situation is unique but it is good to ask a lot of questions too. Best of luck with whatever modality he chooses!

        Linnea

      • Thanks Linnea. Yes, I understand what you’re saying. My husband was diagnosed at Late Stage 4 and a CT scan 2 days ago showed that the cancer has already metastasised to his brain, as well as his adrenal glands and lymph nodes. We are rapidly running out of options, especially for effective control of the brain tumour, Unlike other drugs,this trial drug does cross the brain/blood barrier, so we are hopeful that it will knock that tumour on the head, excuse the pun. Besides, the oncologist told us that if we delay going on the trial, the enrolment option will close and we’ll miss out. I understand that the trial completes in February 2018 and the drug may not be available to the estimated 295 participants after that. So it’s scary stuff, but just in time for you, my husband and a lot of other people, who will have more time now, to wait for more effective treatments to become available and they will. It’s an amazing journey of hope, perseverance and love for each other, isn’t it!

      • Well, you have done your homework and that is the important thing. And yes, this drug was designed to cross the blood brain barrier so here’s hoping it goes right after that brain met. Hugs to you both.

        Linnea

  2. Lovely, lovely, lovely to find your new post!
    I’m thrilled to read about all the wonderful things you pursue – I’m looking forward to take a look at all your projects in a, hopefully, not all too distant future!
    Love and strong hugs for you,
    Anja

  3. Congratulations on 10 years! That is quite an inspiration. And good luck with your studio!

    Valerie G. (a follower from Boston)

  4. Dearest Linnea,

    I think about you often. I can’t tell you how thrilled I am to know you are doing so well!!!
    Blessings to you always!

    Tracy

  5. Congratulations Linnea! You are a true inspiration! Congrats on the clothing store, 24 hrs with all kids, & glad to hear you will be able to put the divorce behind you!! Your post is so positive!

    Hugs, Katie

    • Katie, it took me a long time (even once I’d starting writing it!) but yes, it is a positive post!

      Linnea

  6. Linnea Dear —
    So exciting to see your new post!!!! We are so thrilled and happy for you!
    Sending much love and support…
    ❤ Melinda & all the fam

  7. Linnea, kicking cancer’s ass by really living! This is fantastic. Your kids are beautiful, your studio is exciting, your life rocks. Blessings, my friend. Stand Strong. Hedy

    • Thanks Hedy. It is a good, good time. And you know what? Two years ago I never could have predicted this. I had to swim against a hard current (including my own inertia) but I am finally getting to where I really need to be.

      Linnea

      • “Swimming against your own inertia”, I think maybe that is what I’m doing. I don’t seem to be getting anywhere. Just turned 66, I don’t want to be wasting time but I’m so wishy-washy on what to do with this new life. You are an inspiration. I’m so happy your life is good. Hedy

  8. YAY, YAY, YAY!!! Not only a new post, but a GOOD post. I am so happy that you are doing well. I have been thinking/ worrying about you. Enjoy the rest of your summer and post again soon, or at least sooner!

    • Tracey, I apologize for the worry part. Writing this felt a bit like that end of the term paper you just can’t get started on—I don’t completely understand why but I’ve got a serious writer’s block to chip away at.

      Linnea

  9. Love the good news! Hope the Pfizer drug keeps working for you a good long time, and your energy and creative inspiration keep growing. Hugs.

    • Janet, fingers crossed all the way around. Hugs back and I’m looking forward to seeing you in September!

      Linnea

  10. Such much good news to report. I loved reading it all and hearing from you. Cheers for many more decades ahead.

  11. Ha — meant to say ‘so much’, but such much is kinda fun, too.

  12. So GREAT to hear from you Linnea and BEYOND JOYFUL to hear how great you are doing!!! I’ve had a smile on my face all morning after seeing your post email! You continue to inspire me DAILY! My personal blog has snowballed since we last talked and check out my new “professional blog” to explain oncology science to fellow patients – “The Currently Incurable Scientist” – I never would have become such an active cancer writer (and FIGHTER) without the daily inspiration of you!! So so happy today… http://fightcolorectalcancer.org/research-treatment/currently-incurable-scientist/an-introduction/
    YSP

    • Tom, my response to you has disappeared so let’s try that again: woohoo! Glad to see these projects you have underway and happy to think we have a mutual admiration thing going. Without your research and contribution to drug development I would not be here my friend. Keep up the good work!

      YSP

  13. Anita Figueras

    It’s uplifting to read about how well you are doing. What a great world it would be if everyone could find their Oz, and I’m happy for you that you have found yours.

    I’m a relative newbie to the world of NSCLC and clinical trials. Thanks for being my Facebook friend, you post beautiful, mind expanding links that remind me that there’s more to like than this pesky cancer.

    Anita

    • Anita, I have discovered that one of the secrets to finding one’s personal Oz is to be flexible. If you saw my Oz you might laugh, but it works for me!

      Linnea

  14. wow! wow wow!!! It is so great to read your blog & inspiring updates. Then, your words are always an inspiration Linnea. Still, this one hit me as just how important it has been for you to find your heart home and do what you are passionate about. I can’t wait to see more photos, and hear updates on your children as well as your business venture. I love you my friend ❤

    • Lorraine–I love you right back. It’s been a long time coming, this getting centered. But worth every ounce of struggle. Hugs!

      Linnea

  15. So good to seed you posting here. It is important to me to feel a connection to you. You are a beacon leading the way. My son was just schooling me on sleep, eating and exercise, he is 11. I am going to tell him you agree. Love!

  16. I am so happy that you are not only living but thriving!
    Congratulations and thanks for the update.

    • Thank you Karen. You know, I have gotten pretty good at surviving but this is going to be my time to thrive—in some ways a very different (and somewhat heady) concept.

      Linnea

  17. Thanks for posting LInnea- My husband is on the same targeted therapy as you are. He is also feeling so much better than on previous therapies. Thank you for caring enough to put yourself out there for all of us in can love you and wish you well! You certainly are an inspiration to many.. Congrats on 10 years and wish you many more..

  18. I am so happy to hear how well you’re doing! I’m close to the 5 year mark of living with stage four lung cancer and have every intention of reaching 10 and more! You’re an absolute inspiration! I raise a glass to you for your bravery and perseverance. YOU ROCK!!!

  19. My heart leaped to see you in my blog feed this morning!!! To find out you are doing so well fills my soul with JoY that cannot be contained. Good for you!!! Amazing You! I can only hope to begin again like you. I still find myself in the Widow ChaCha; one step forward, two steps back. But if you can accomplish all this – the very idea of you fills me with HOPE.

    Sending all my love on the wings of a desert sparrow,
    Deborah

    • Deborah, I was thinking about the word forgiveness the other day and what a bizarre concept it is (although well intended). Some things can never be forgiven, merely acknowledged. The same is true for certain losses—that hurt will never heal and yet we do find a way to live with it. I guess I view my cancer that way—neither forgiven nor healed—and yet my life goes on. The wings of a desert sparrow sounds so beautiful…

      Linnea

  20. Kathleen Gereghty

    Soo good to hear from you. Life sounds very good. I’m so happy for you.

    Sent from my iPad

    >

  21. Glad you are doing so well.

  22. Linnea,
    great post.
    say are,there any lofts for sale there?
    I’ve always wanted a live/work space.
    It’s a shit storm today…Cancer.

    • Kyle, sorry to hear about the shit storm 😦 I rent my space, but Lowell is full of lofts—way cheaper than Boston or NYC. Hugs.

      Linnea

  23. All sounds great Linnea and good to here you are well and happy. Also good news on your new PF TREATMENT.

    Stay well and enjoy your rennaissance.

    Simone

  24. Nice blog, Linnea. It’s so great to see you thriving, despite the challenges.

    Luna

  25. HI LInnea…how wonderful to read about how well you’re doing! I am so happy for you. I MUST go up to see your place! and you MUST come back for another sail before the summer is over.! I’ll be in touch.
    Sending happiness hugsooooooooooo
    Laurie
    p.s. I’m doing equally well..the best I’ve felt since my diagnosis 7 1/2 years ago! lots of energy, which I’m taking advantage of!!

    • Laurie, first it is good to hear that you are feeling so well. And yes, do come and I would love to go sailing with you again!

      Linnea

  26. Hi Linnea – So glad to hear that you are doing so well! I’ve been following your blog for 3 years now (I also with NSCLC) and continue to be inspired by you. Thank you for sharing your life’s journey with me. You are a ray of sunshine!

    Joy and Peace,
    Elizabeth

  27. I check on your blog regularly Linnea and I was very happy to see a post today. I am glad you are sounding fulfilled. I hope the opening of your shop/gallery goes well. My best wishes for continued contentment.
    Beryl xxx

  28. Hi Beryl—I am really looking forward to this next phase of my life. Hope you are having great adventures of your own! xo

    Linnea

  29. Hi Linnea, I’m new to your blog and want to thank you for being so inspiring. My husband was diagnosed with EGFR+ Stage 4 NSCLC in December 2014 so we are relatively new to the whole experience. I am trying hard to keep positive and it cheers me greatly to hear of people like you at the decade mark, feeling good, and keeping inspired. Thank you!

    • Mary, I am generally good about responding to comments but just discovered a whole slew I’d missed—I apologize. I hope your husband is feeling well and positive as he comes up on a year since diagnosis. Wishing you a strong and hopeful holiday season.

      Linnea

  30. Hi, Linnea. I feel very inspired by your journey. My dearest sister was diagnosed with NSCLC last year when she was 36 yrs old in China. She has been struggling with cancer for one year. But she is not lucky enough to wait for the latest drug in time. Now she is showing the resistant to the crizotinib and metastasis. She is in emergent need of PF-06463922 which is not available in China. I am in U.S. now. Could you kindly plz tell me how to get PF-06463922? Thanks a lot~~~PLZ~~~~God bless you!!!

    • Yuan, I am sorry that I did not see your comment earlier. I hope that you have figured out a way for your sister to have access to PF-3922. It is frustrating that the same treatments are not available to all. Best wishes.

      Linnea

  31. Hello Linnea, On the day you posted this I was given a tentative diagnosis of NSCLC. Tentative in that my surgeon was certain it was an adenocarcinoma but unofficial until he removed it and made it official. On 9/2 he performed what was originally going to be a wedgectomy but subsequently turned into a lobectomy of the upper lobe of my right lung and confirmed that it was a stage 1 adenocarcinoma. On the plus side, there was nothing in the lymph nodes so no chemo or radiation required and it appears that a total “cure” has been attained.

    This is all, of course, good news; however, there is an “area of concern” in the lower lobe of my left lung that lights up in a pet scan. I discovered your blog because I’ve been trying to find some reference, any kind of reference, to treating cancer in both lungs. The key question is, if the “schmutz”, (I believe this is the awesome technical term you used) in my left lung is, in fact cancer then can you have lobectomies on both lungs?

    As I said, I’ve spent hours trying to find information on the internet without any luck. The only response I’ve had is unofficial from a friend who says that it is almost unheard of which is why I’m having trouble finding information. She said that typically either one lung or the other has a tumor or both lungs have multiple tumors but that this scenario is unusual. Any info you might have would be appreciated.

    Congratulations on your decade of fighting off the demons. You are an inspiration to those of us just starting the battle. I am 57 but I have a 14 year old daughter who just started high school and it is my intention to see her graduate from high school, college, and walk her down the aisle.

  32. Bob, I am late to respond to several comments and perhaps by this time you have your answer. I do know someone who has had two lobectomies although generally the treatment of choice would be one that spared lung tissue. At any rate, you should be scanned every three months at this stage and hopefully will have some clarification soon.

    Linnea

  33. Linnea, this drug Lorlatinib is amazing! But it’s also crucial to have a positive mindset while on it. My husband Robert’s cough abated after just 7 hours from the first dose! He’s on 100mg daily. Within 24 hours his energy began to come back. In 1 week his swollen lymph glands disappeared and he could take a deep breath without coughing. In 2 weeks he could feel the tumours in his lungs separating from the surrounding lung tissue. He’s been coughing up bits! We know the tumours throughout his body and brain are dying, because he feels better than he has done since 2008, when he first realised something wasn’t ‘right’ in his body. His cholesterol and blood sugar is up and he has some neuropathy in his toes, but now has amazing energy and a zest for life! I’m so grateful that both you and he are doing so well on this drug. It was your blog that encouraged us to give the trial a go first up after diagnosis.
    In comment to Bob F., Robert HAD cancer in both lungs (positive thinking). So, there is treatment if you qualify and more drug trials upcoming next year.
    We get follow-up scans in 3 weeks’ time and I’ll be sure to update this community when we get the results, if that’s OK with you, Linnea. Thank you so much for providing this forum for others. Please keep us updated on your journey. You are an inspiration through the bad times as well as the better ones.

  34. Glynis, I am so pleased to hear that your husband is feeling better and responding to lorlatinib. What a great gift in time for the holidays! And although scans are important, I still feel we are generally able to provide the best assessment as to how we are doing by noting how we are feeling (yea!). Please do keep us posted!

    Linnea

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