First, a blanket apology to anyone whose birthday I have forgotten this year. Same goes for all those unanswered emails, texts, phone calls, missed appointments and other no-shows.
Once upon a time I and my ability to recollect were reliable. As a child, I possessed an eidetic memory and when I wished to retrieve an event it was almost as if I were watching a movie of the past in my brain. According to literature the ability to remember things in an almost photographic sense disappears in adulthood, but I am a highly visual person and always utilized a sort of Hansel and Gretel bread crumb approach; when trying to remember something I would visually retrace footsteps in my mind until I came back to the thing I was searching for.
That is, until I started my current therapy, lorlatinib. A small molecule designed specifically to cross the blood brain barrier, lorlatinib is able to deliver drug to tumors within the central nervous system. This is great news for individuals with brain mets but it also means that there may be accordant cognitive side effects. I started early in the trial during dose escalation and at a previously higher dose than I am now taking, and those cognitive side effects were so pronounced that a few weeks into the trial I felt as if I could no longer process or reason. Fortunately lowering my dose improved that scenario but I still felt as if my memory had been completely wiped and that I had suffered something akin to a brain injury.
Because I was also in the midst of a nasty divorce it was hard to parse the stress from the effects of therapy, but suffice it to say that life was challenging.
Two years out I am not only still alive, I feel almost as smart as I used to be. However, my memory is still completely shot. Add advancing age into the mix, and I think it’s fair to assume that I will continue to do things like purchase airline tickets to the wrong city (last summer) or for the wrong day (upcoming trip). It’s a little unnerving and yet you know I like to look on the bright side (cue Life of Brian). Historically I was a mental ruminator, and often made myself miserable by reviewing unpleasant situations over and over. Well guess what! Not being able to remember shit sometimes comes in handy, and I no longer dwell on much of anything.
Although my memory challenges make life less predictable, I am learning a lot about flexibility, personal forgiveness, and a whole lot of scrappy. In the case of the flight to the wrong city, I rented a car (first time ever, alone) and drove the additional 400 miles to my intended destination.
So even if I miss the boat entirely (wink wink–see above), I know I’ll still get there. I just might not remember how.
Thank you for sharing your journey with others. I really enjoy reading about your journey with cancer. I am also on my own lung cancer journey with ALK mutation. It has been 21 months since my stage 4 diagnosis where my doctor told me that my cancer is incurable and most only live to about 18 months as an average. Reading your blogs give me hope for the future! I admire your courage and your ambition to help others as you make your way through your own challenges. Please know that you are making a difference in other people’s lives! I see you as one of my heroes! Please know that I will keep you in prayer for continued healing in all ways.
Many blessings to you,
Julie, a pleasure to meet you although we both would have preferred it be under other circumstances. Don’t pay too much attention to people (even your doctor) who make predictions per your longevity. Consider yourself exceptional and then just keep on keeping on. Big big hugs.
I’m sure you remember me, the guy you said you would loan that $5 million, and that you said was the most handsome man in DC? Yup, that was me. What? Really? You don’t remember? How can you forget the most important night of your life?
So really, it’s not like we’re forgetting shit that matters! I have dates on my calendar to remind me of those event’s I probably shouldn’t miss, and the rest is like taking a trip without a map. It can get a little scary at times, but the stories when you find your way home are priceless!
You have lots of people that love you dear. If you find yourself forgetting that, well, we’ll just have to remind you!
Thanks for the story!
Jim, you must have made a big impression on me because I DO recall you 🙂 And I don’t mind being reminded once in a while that I am loved—consider it mutual.
You are such a wonderful writer! I know you will always find your boat, too!
Thank you Robin. And even if I don’t, I’m a strong swimmer 😉
Hi Linnea, Thank you for sharing the very funny comic and your experiences. I could totally relate. Just read an article on resilience and I think that’s what you exude….resilience! It takes courage to be resilient and continue on! You are my inspiration!
Peace, Love, Joy and Happiness!
Thank you Elizabeth—resilience is one of my favorite concepts. Here’s to our continuing resilience!
Thanks for sharing Linnea. Yesterday I spoke with a friend about my chemo brain. It worries me but you made me smile!
Katie, it’s no fun sometimes but honestly, you don’t need to be brilliant to be happy—but you do need an open heart. That we can do 🙂
Thank you Linnea for putting a face, a narrative, and some pretty intense hard-hitting reality to your treatment. As one of the colleagues at Pfizer that helps to develop the oncology drugs that you have/are taking it means so much to have this level of personal interaction and to see both the upsides and the downsides of what we produce. Again, thanks for keeping it real.
Hey Pamela, thanks for reading and commenting! And of course, for your help in developing those drugs that have extended my life beyond what I once thought imaginable. It has been a privilege to be an early participant in clinical trials but that participation has not been without risk and a price as well. I hope to be a voice of hope but also awareness (the keeping it real part). And trust me, the upside (I’m here) outweighs any downside. Keep those novel therapeutics coming 🙂
I hear ya! xoxo Kimmy
I bet you do!
big xo Linnea
Thank you so much for telling your story, it is so inspiring for us who are new to this condition. My wife was diagnosed with the IV stage ALK+NSCLC; when we got the news, it was like we were ran over by a bus. Our son is only seven, though the daughter is 14 already. We are on crizotinib for a month and are aware it has its limits, so we are thinking about switching to more efficient drug. Clinical trials are way too expensive these days, so we pray for crizotinib to work as long as possible.
Fazil, I am sorry and also all too familiar with that feeling (the bus). Hopefully crizotinib will be effective for a good, long time. Fortunately there are several ALK inhibitors now–like money in the bank should crizotinib fail.