Keeping to myself

You know, it’s been a hell of a year. Enormous change, too much loss and an awful lot of heavy lifting—both emotionally and physically. I am stronger for it all but weary as well. Make that exhausted.

Mom’s death knocked me out of orbit more than I could have imagined—as I feel I may have lost the person who cared for me the most.

I say that in a quantitative sense: Evalynn loved her children heaps. However, from a qualitative perspective, our mother did not always love us well. Strong willed, occasionally self centered and histrionic, her affections were like a wild fire, and sometimes we got burned. Once upon a time I tried to reason with her: ‘Mom, just because you will do anything for me, it doesn’t mean you can do anything to me.’

Grieving has been complicated. I miss the hell out of her but am also tasting that bittersweet broth of relief and confusion that happens when a very passionate but emotionally destructive relationship falls out of one’s life.

Make that two relationships. David and I were a couple for over twenty-five years. There are many parallels between the bond I had with my mother and that which I shared with my husband. Duration, intensity, depth of love, degree of difficulty–but also importance.  My mother and my husband have in many ways shaped the arc of my life.

Perhaps because I am the one who moved out of our home, there are those who felt my decision to leave David was selfish. I may go into more detail at a later date but I can assure you that getting divorced was never my first choice. And under the circumstances it was and is hardly easy. Again, a conversation for another day.

I realize most of you come to this blog to read about lung cancer, and that some of you have been on pins and needles as to what is going on with my lung cancer. I am feeling well—unexpectedly well—and I am also acutely embarrassed and even ashamed that I have not shared that update with you sooner. However, my illness has not been foremost in my mind these days.

There is an op ed piece in the New York Times this morning, The Problem With Collective Grief. In reference to the response of the Dutch public to tragedy, it struck a personal cord with me:

“The sad thing about mourning is that it really is quite unshareable, that it involves an extremely individual emotion. People have the right not to show their emotions and not to share them, even when it comes to soccer and calamity.”

And then this:

“…that we are often indifferent, that we are busy enough as it is trying to provide emotional succor for those closest to us, and often don’t even succeed in doing that, seems to me not so much a sign of our inhumanity, but of our humanity. Were we to actually allow the world’s suffering to sink in, we would quickly become psychiatric cases…”

I share these observations with you because they help explain my own emotional state. I’ve been grieving one very important relationship only to suddenly have another come to an end. And because life doesn’t hold still, I’ve attempted to maintain some semblance of order and sanity, all while starting a clinical trial, working on a fairly contentious divorce, attending to my children’s needs, worrying about my financial future and contending with the side effects of treatment. I’ve hit most of the high notes, but it’s been a bit hit and miss when it comes to communication. At least one friend has jumped ship and others may follow suit. I’m saddened by this inattention on my part—but it’s been all I could do to take care of my own.

Last week Peter got his driver’s license and the two of us have been busy painting walls and moving vintage clothing into my new studio space. Yesterday I had the Moh’s surgery for the basal cell on my shin. There will be a memorial for Mom in Fort Collins on Saturday and Peter and I will be driving to Colorado. We were to leave early this morning but I just couldn’t get it together in time.

It’s a good thing sometimes; pushing pause. An extra day gave me that space I needed to finally get this blog written.

We will hit the road first thing tomorrow, with Peter doing his fair share of driving. Should be a fine mother/son adventure.

23 responses to “Keeping to myself

  1. Dear Linnea,
    even if you keep to your self, you are never alone. I’ve been quiet as well. but I’m still with you. Always your friend sending you strong hugs!

  2. Safe travels.

  3. Always in my thoughts.
    Stay well and strong.

  4. Always in mine too Linnea – I think of you so often – and admire you so much. Travel safely on that road trip! Xxx Liz

  5. Hi Linnea,

    I was just thinking about you yesterday and wondering how things are going for you. Sorry to hear about your Mom.

    Happy trails on your road trip.


  6. Safe travels. It’s a lot to deal with, and you have to do what’s best for you. Blessings.

  7. That is a lot to process in a short time. I would love to treat you to lunch or tea while you are in Fort Collins.

  8. Thinking of you. I grew up in Ft Collins and my family is still there. Wish I was there to see you. I, too, am fighting the saw fight. Did you grow up there?

  9. Georgann Casey

    Because you call your blog “outliving lung cancer” I am happy to read about your life, as well as your updates on your cancer. But mostly I like the life. It means you ARE out living it. I lost my husband to lung cancer only 6 months after his diagnosis. I started reading your blog while he was in treatment. It gave me hope even when I knew there was none. And now it gives me hope in daily trials. In the time he was sick, and for 6 months after, I lost him, 8 close friends, my dog and survived Sandy here at the beach in RI. and through it all cared for my mom with alzheimers. She is still here now. although it’s not really her.
    Of all the reading I’ve done, your blog is the only one I’ve stuck with.
    And today, when you spoke of losing your mom, I totally related. She could have been MY mother. And the thought of losing her for good is at once heartbreaking and then has me thinking that maybe then I will be able to breathe again.
    Thank you for your honesty and for sharing the brutal truths of your life.
    “The sad thing about mourning is that it really is quite unshareable” is something I wish more people understood.
    Just keep writing & sharing & venting & feeling all that you do. You are a remarkable person. I wish you all the best.
    Hugs & Healing~G

  10. Hey L- I have too many responses to this brilliant post; I will share them with you offline. You are so generous with your observations, and you have obviously processed them in a way that 99.9% of us mere mortals cannot. I don’t know how you do it. Happy trails tomorrow with your wonderful son. Enjoy every well-earned minute.

    Sending you more love than I can express in words,

  11. grayconnections

    Losing a parent is a major addition to your already full plate. I’m sending you hugs, warm thoughts, and support as you process your grief and the changes in your life.

  12. Dear Linnea – so good to read your post and know that physically you are well. Grieving is always complicated. I do want to share with you some wise words from Dr. Don Anderson, a psychiatrist I worked for many years ago. When my father died I had not had contact with him for about 12 years but yet his death hit me very hard. Don told me that often the death of those we have not had the most positive relationships hit us unexpectedly hard because its final and we no longer have the option of fixing things. So be kind to yourself and let the grieving process take its own time and its own way. There is no right or wrong way to do this. Enjoy your trip with Peter. love, Beryl

  13. Wonderful to hear you’re feeling unexpectedly well and have seen dramatic shrinkage in some places and either some shrinkage or stability in others! Sorry to hear about the coughing up blood — I’ll hope that that is a result of demolition work being done by your new miracle drug rather than a side effect of the drug on your lungs.

    Best hopes,


  14. Your thoughts about life are so meaningful, Linnea. Thank you for sharing your open heart with all of us. You are a real role model to follow. Much love to you during all these challenging times.

  15. I so relate to you’re words.. Keep strong and smiling.. We are hear to listen when you are ready to talk x

  16. You sound great even in the midst of it all. While you say that people want to read about lung cancer, I think they want to read about life and dealing with all of life’s challenges and that is what you are doing — elegantly and honestly. Good luck with the memorial and have fun on the trip.

  17. Dear Linnea,

    I feel the same as others here. I have lost a parent who hurt me, yet loved me more than life itself. You write so succinctly. What you teach me through your blog is how I am not alone in the way I process my losses and more. Thanks for sharing.


  18. HI’s so good to hear from you, finally, although it seems you have had such a tough time with all that you’re dealing with…You articulate everything so well; I’m always touched by your words..
    I’m sorry to hear about the loss of your mother – and I know how tough it has been to create your new life as a single person – a big loss even if it was your choice.
    Your lung cancer update is not terrible – clinical trials are a trial! (you know that I have been learning to manage the very difficult side effects of the clinical trial I’m on – not easy!)..
    I am still hoping that you will be able to join me for another sail here in Gloucester before the season is over…I’ll give you a call.
    Thanks again for sharing – yours is also the only blog I read (altho I hope some of your readers might want to visit mine: Dancing through Cancer).
    Sending hugs, Laurie

  19. Linnea,
    Life is like a winding road. We never know what is around that next bend, but we keep driving anyway.
    My trial drug (AF802) has finally lost its effectiveness after 1-1/2 years. I start Zykadia tomorrow. Any major side affects to look out for?

    • It was hard on my GI tract, upper and lower. I found that taking it with food helped, but even then I’d have a bad day every week or two. Best of luck!


    • Note to Larry: Best hopes to you with your new line of treatment.

      FWIW, I assume you needed to try another inhibitor without delay or less difficult to travel to than the trial of the 3rd generation drug PF-06463922. (PF-6463922 was designed to inhibit even a particularly stubborn mutational variant of ALK that often emerges after trying other 2nd generation ALK inhibitors, but there are only two trial locations in the USA, the waiting list can mean months of waiting to try to get in, and its trial eligibility rules require participants have tried no more than 2 prior ALK inhibitors; for example, Xalkori (crizotinib) then Alecensa (alectinib, CH5424802, AF802)) or Alecensa as one’s first drug and then Zykadia (ceritinib, LDK378) second.)

  20. Linnea, Stand Strong, Lady.

  21. So sorry to hear of the loss of your mother. No matter how well you get along with a parent, you love them unconditionally and miss them deeply when they are no longer with you. My prayers are with you as you continue to live a life filled with radiance and vitality. Enjoy your travels and I look forward to your next posting …God Bless!

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