I’ve been gone for awhile now and I feel a stranger in my own blog. I apologize for such an extended silence—I know that in this community the lack of an update is worrying. So let me start by saying I’m okay: not exactly jump up and down great, but hanging in there.
By way of explanation; I am happy, happy, happy. Mentally, I have never been better. However, physically the situation is a little more complicated as it would appear I’m not responding to treatment. Although I’ve not had a CT scan since starting back on Xalkori, my cough, nocturnal bronchorrhea production and a troubling shortness of breath suggest that my cancer is spreading. In a few weeks, I shall likely start my third clinical trial for an inhibitor that targets both ALK and ROS-1 mutations: PF-06463922.
I am mindful that it is a blessing to continue to have options. I am also entirely cognizant of the fact that if I don’t respond to the trial drug, those options will be rather limited. It is a sobering realization and yet I continue to focus primarily on the positive aspects of my ongoing survival.
For instance, yesterday was not only Easter, it was Peter’s seventeenth birthday. I was diagnosed with lung cancer in 2005 just before Peter turned eight; two weeks ago I quietly marked nine years of surviving post-diagnosis. Happy Birthday Peter and I am thrilled to be able to celebrate with you!
Life really is remarkable—in all its ups and downs. My own has been topsy turvy for some months now and at some point I felt the need to pull back from blogging and simply concentrate on the day to day business of restructuring existence; more on that later.
First, a little personal history: it was just over fifteen months ago when I resumed chemotherapy. Simultaneously, my marriage was hitting the skids. I felt sick, scared, lonely, trapped and was well on my way to becoming someone I find intolerable—an unhappy person.
Without a doubt, I had hit my personal low point and for the first time, I considered stopping all treatment and simply saying enough. Briefly, that. Instead I took a step back and assessed the situation. It wasn’t going to be easy, but I began to formulate a plan to not only survive, but to prevail.
prove more powerful than opposing forces; be victorious.
“it is hard for logic to prevail over emotion”
My first priority was Peter’s immediate future, and to that end much hard work went into the private school process. As you know, he was accepted to Phillips Exeter Academy where I am happy to report he is thriving. I am particularly proud of the fact that he qualified for the novice crew team this spring—it turns out rowing is something that Peter really enjoys and has the potential to be quite good at.
My second goal was rather short term, and that was to get through chemo. I did, and after six months of infusions, enjoyed almost nine treatment-free months. Even though my cancer progressed, my body got stronger, and I really needed that physical strength when it came time to move.
And what a move it was. Deciding to separate and ultimately get divorced after more than twenty one years of marriage was huge; particularly under the circumstances. Obviously, it is not a decision that was made lightly.
My dear friend Melinda has remained my guardian angel throughout this process, offering counsel as well as emotional and financial support at various junctures. We’ve been pals (and partners in crime) for almost five decades now and I simply can’t imagine life without her.
I’ve also had some help from a surprising source. At that low, low point many months ago, lying in bed one night after chemo, I felt the need to be both protected and held. I searched my imagination for the appropriate companion and found that it was a bear that I was looking for. I could not only see this bear, I could feel its presence beside me. And I asked this large animal to hold me close; to keep me safe. In exchange for this protection, I told the bear that when I died, it could eat me.
Now this may sound really bizarre—a little crazy even. But, to me it was a perfectly fair exchange. I truly believe that we are all part of one living system, and that when we take our final breath, our energy is dispersed. To be eaten by another creature is a logical repurposing of energy—we do it ourselves every time we dine on something that was once living (plant or animal). I realize some of you may be horrified—and once again I offer my apology. However, know that for me the current tradition of embalming a body is anathema–and cremation is not much better. If I cannot be eaten, I would rather decay and become part of the soil.
Some weeks ago, there was a social quiz on Facebook–‘What is your spirit animal?‘ I took the silly thing out of curiosity. It was already obvious to me what my spirit animal was and I was certain the quiz would get it wrong.
Well, surprise, surprise, my spirit animal is The Bear. Ha! The questions really were seemingly random, but somehow, someway, it turned out right.
Bear really does have my back.
Bear Down…..can’t wait to se you soon. Mom’s Birthday? (sounds like it could happen)
Dear Linnea, thank you so much for this post. Your longevity and your care of your son are inspirational to me. I was diagnosed just this past September with Stave 4 , have had permextred and Almita and am now on just Almita. I have no mutations. The cough and hoarseness returned immediately. My next scan in a few weeks will be telling, of course. I want to live- am now 73 and healthy and busy- but can see that the hoarseness is a bad sign. I, too, am going to focus on doing my best on just me and my family and stay happy in this day. I was brought to your post by New Hampshire friends, the Curriers, who are Yoga friends with someone who has worked with you. Take care in living forward. Thank you. Nancy Gleason
Sent from my iPad
I stumbled across your blog when I was diagnosed with stage IV NSCLC in early December and feel honored you share your life and more importantly, your feelings and thoughts with others. I gained a sense of peace and strength in reading past entries as I am trying to better understand and acclimate to the new normal my life now is. I am happy for you that you have options (trials) available to you and thank you for updating your blog to assure the community and your followers you are prevailing!
I have followed your blog for a long time now but never commented. Now is the time to change that!
I totally identify with what you say about the bear as I have always told my family that I would rather be eaten by a bear than be cremated. Actually any wildlife that could use my old body would be good. My son has always said he would do his best but of course he’d be in big trouble with the authorities if he did such a thing.
I am healthy at present but I hope when my time comes if I can, I will walk into our forest and lay down. Luckily we live in a forest and are isolated.
I don’t think you sound crazy at all, just realistic and very caring. I wish you the best going forward. It can’t be easy.
I have your back too. I can see that bear, and I doubt he/she/it sees you as anything more than an unripened berry for the time being. I marvel at your strength, my dear Linnea. So good to hear your well-crafted, beautiful words.
Glad to hear from you Linnea – as always you strength & perseverance no matter what the Universe throws at you has been an inspiration for not only us cancer survivors but everyone else as well! I have high hopes that the new Pfizer drug will help you be a trailblazer yet again! I love your Bear paragraphs at the end – in terms of the social quiz, I don’t believe it was a coincidence – yes, I think the “bear” you so much needed for support has made it clear that he/she has your back! YSP – DK37
So wonderful to hear from you. You were in my thoughts big time yesterday and I awake this morning to your blog post in my Inbox. Divine. I’m so glad you took time for yourself and always trust in your wisdom to know. Just like the bear. What a fabulous idea and so glad you have that protection and comfort. I can’t imagine a better source. Take good care, bear.
Praying for you. Know that God always has your back. He is always there.
Linnea..your post is so moving, so well-written, so beautiful. I’m all over the place with emotions reading it. I’m so happy you’re happy…glad you’ve been creating a new life for yourself! I am worried about your physical health, but you still have a good option – that’s hopeful!
Your strength and courage does shine through it all. You are my hero and role model!
I love your bear.
sending hugs, Laurie
I Was Diagnosed with NSCLC ALK+ in Sept 2013. You have shown me that there is hope. You have been a candle in the darkness. I also share your worry about the future of children. I have 2 small boys (3 yrs 1yr) and they keep me moving. You inspire me there as well with your “never stop moving” attitude. Hang in there. The bear is not hungry.
Three words…. I LOVE YOU……..
Four more……. You are an inspiration!
Very good to get your latest (eloquent, beautiful) (and okay, kinda weird but in a good Linnea way) post. Miss you a lot. Went to Duarte’s the other day and thought of you and naturally wished you’d been there with me and my crab and beer. Keep up the happy — it’s your gift. Love you a tremendous amount!
Welcome back. Good to read your post.