I’ve been on drug (LDK378) again for over two weeks now and my liver enzymes look great. Business as usual, but with a less than subtle change; it is increasingly obvious that my formerly sunny attitude has lost some sparkle.
Sustained stress can be a real buzz killer, and we are attempting to address several sources of anxiety on the home front. However, even as the potential for greater serenity becomes a reality, I am aware that something else is missing.
Somewhere along the line, between work and worries, joy has been neglected. The Merriam-Webster online dictionary defines joy as such:
1
a : the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires : delight b : the expression or exhibition of such emotion : gaiety
2
: a state of happiness or felicity : bliss
3
: a source or cause of delight
As I read these words, joy seems very far away indeed. Although relieved that I could stay on trial, I cannot shake my unease as to what is next. With scans every six weeks, and automatic expulsion from the trial once statistical progression has been reached (20% by RECIST standards), I am unable to settle.
It has been my intention to channel the underlying angst I am feeling into proaction; I am staying very busy, with particular focus on researching and realizing some opportunities for Peter. Last night David expressed gratitude for my hard work, and to have his recognition felt good.
However, even a flurry of productivity isn’t always enough to keep sadness at bay, and on those occasions when depression simply flattens me, I grab a book and head to bed.
Pema Chodron, a Tibetan Buddhist nun, is the author of several books in which I found great solace following my initial diagnosis with lung cancer. I am reading those books again, starting with When Things Fall Apart–Heart Advice for Difficult Times. The following paragraph offers apt resonance:
“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. And then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”
The word joy shines like a bright jewel at the end of that passage. Regard the company it keeps; grief, misery, and the somewhat pedestrian relief. All mixed up together.
I think, perhaps, I have become preoccupied with fixing things. In a rush to identify what is broken, my perception has become selective. Seeing what is wrong, I am missing what is right. It seems obvious, and simple really.
But it’s not. Life is complicated and so am I. However, a determined student, I find myself ready and willing to take my lessons when and where they come. I shall start by welcoming joy back to the table; to let wonder and delight be part of the conversation again.
Beauty and the background
life and breath: outliving lung cancer 
Wonderful, wonderful, wonderful! Beautiful post, perfectly on the mark! Love you! m
Thank you miss M.
love, L
PS LOVE the photo!
As I’ve commented before, you are a courageous soul in every sense of the word. Your writings, curiousities, feelings, concerns. solutions, adventures, questionings, all reflect your endless talents to be, and to share with us out here. Thank you for allowing me to be the recipient of your many gifts.
Cheryl
P.S. I will be a participant in this years Lung Cancer Advocacy Summitt (because you wrote about it in one of your blogs).
Cheryl, you are so good to me and I am glad to count you a friend. And I am really pleased you will be attending this year’s NLCP advocacy summit; I believe you will find it an amazing experience.
Linnea
what a lovely and moving posting, Linnea; thank you again for your honest sentiments….my heart goes out to you…I wish you joy wherever you can find it.
and I, too, will be a participant at the Lung Cancer Advocacy Summit thanks to your mentioning it in your blog!
Laurie, thank you. It’s out there, joy. I’ve just had blinders on.
And I am so glad you will be an advocate as well! It will be great for you and Cheryl to meet each other and I am certain that you too will find it to be an extraordinary experience. NLCP has gained two powerful advocates!
Linnea
Linnea – I love your photo and the tag “choosing joy”!
My 4 year old daughter was having problems with anxiety nightmares this past winter. Since I always was in charge of her bedtime (book reading etc.) – an idea popped in my mind: right before lights out, I asked her to tell me her “favorite thing that happened that day” to put her on positive mental footing right before sleeping. It worked like a charm – her nightmares went away immediately.
When I was recently diagnosed with cancer, I went to a “Cancer Patient 101” class at the local Cancer Center. That class recommended to write a daily gratitude journal while on chemo to help keep positive. What I ended up doing was a hybrid of their idea & my daughter’s tradition. Every night as I lay in bed, I mentally say thanks for whatever list of things pop in my head that I am thankful for. I try to focus the nightly list on anything “good” that happened that particular day (including if needed small stuff) but that being said, some days kind of suck for all of us, so on those days, I focus on listing “big picture” things that I am thankful for.
As someone prone to clinical depression myself, this “forced” mental exercise each night has worked to not allow me to exclusively focus on the bad, even on the sucky days, which we all have-
BTW my daughter quickly came to love her nightly tradition – she really gets into it now, sometimes (as only a 4-year old can) she ends up reciting a LONG list of “great” things that happened to her that day. It is intriguing (and often very funny) to see the simple things that “make the list” of daily JOYS to a 4-year-old! Listening to her, I think adults can learn a lot from 4-year olds sometimes – we often ignore the simple joys of everyday life, that are still so new & exciting to a young child. And yes… the tradition is now expanded: she now forces me to tell her MY favorite things from my day too before I am allowed to say goodnight to her. Which is a great tradition for the two of us to share.
Dk–this is a wonderful strategy you have come up with, and an incredible way to facilitate bonding as well. I love that your daughter has required your participation (a strong woman on the right track at an early age).
I have employed a similar technique just to kick-start conversation with both of my sons (my daughter has never needed prompting!). When I would pick August, now an adult, up from school I would always inquire about his day. Inevitably, he would have little to say. So I became more specific and would ask, ‘what’s the best thing that happened today?’ And, if that provided no stimulus, I would move on to ‘what’s the worst thing that happened today?’ Generally, at least a brief conversation would ensue. It works with Pete, our youngest, still.
Thank you for sharing this–the practice of gratitude is good at any age; I needed this gentle reminder.
Linnea
Strong, strong hugs for you, dear Linnea!
The photo is pure joy – you capturing it, for us to admire.
Miss you, hope we can talk soon.
Love, Anja
Anja, yes, I am behind in emails yet again, but I think Skype is a great idea, let’s make a date!!
love, Linnea
It’s so hard to suddenly realize joy requires an effort. I’m sorry you are struggling with depression – I hope joy remains that bright jewel in your mind, and more and more you can find ways to access it. Wishing you some good recuperation reading, and some strong cups of tea. Personally, I’ve find reconnecting with the quiet moments a good first step towards feeling better.
Catherine
http://www.facingcancer.ca
Catherine, thank you for the empathy as well as the good wishes. It was silly of me to think Joy would just ‘happen’, particularly when I am not looking for it. Time to get my eyes and mind wide open to this particular possibility, and I believe you are correct; quiet moments may well be the place to begin.
Linnea
Dear Linnea – before logging onto your blog today, I came across a Maya Angelou quote. “If you find it in your heart to care for somebody else, you will have succeeded.” You have cared for so many people and I hope you find joy. It’s always fleeting, but the most wonderful feeling in the world.
Beryl
Beryl, it is a beautiful quote. And, if love is joy, I have never actually been bereft, because there are so many people who mean so much to me, you among them.
Love, Linnea
Thank you for making the time to share.
Patrick
Patrick, thanks for taking the time to comment–it means much to me.
Linnea
I love and admire how you always learn and grow…best to you,
Pam
Heck, I’m in remission and struggle with sadness and anxiety everyday. It’s normal. Always waiting for the other shoe to drop. I follow your blog and pray for you everyday.
Melanie, obviously I’m right there with you, but I’ve set my personal bar high. I accept that feeling sad and afraid is normal, but that doesn’t mean I won’t fight against it–ultimately, it is just not how or where I want to be.
Thank you for your good wishes and for sharing my journey–I wish you the very best on your own.
Linnea
Dear Linnea, this blog absolutely resonated with me. I’m totally with you! I myself battle with the emotions – mainly sadness – everyday. Like you, I find solace in Buddhist teachings. I love you. And, thank you for sharing your feelings. Yuki
Yuki–I miss you!! The sadness is a tough one, isn’t it. But we are fighters so we go to battle–the buddhist way! It is good to hear from you and I love you too. Stay well my friend.
Linnea