Getting some things in order

Looking back, I see that I began my previous post with the words, “First, the good news”.  What I didn’t get around to saying was that I’d been struggling again with an old demon of mine, depression.

The day after my return from Colorado, David off for work and Peter at a friend’s house, I was resting on the couch, quite alone with my thoughts (sometimes a treacherous place to be). Without warning, a tidal wave of grief just rolled over me; literally taking my breath away. Suddenly I was sobbing and gasping for air, absolutely panicked.

Fortunately, I had the good sense to call my daughter Jemesii, who assumes an incredibly calm and capable demeanor in times of crisis. She talked me off the wall. As luck would have it, two of my closest friends chose that particular day to also check in and I managed to pulled myself together.

However, one thing was clear. I was feeling completely overwhelmed.

While in Boston on Monday, I ran into my favorite thoracic social worker. We had a brief chat about both the wonder and the very real strain that accompany extended survival with a terminal illness. It is increasingly difficult, I explained, to maintain a constant state of gratitude, when in fact the very things I am grateful for are taken for granted on a daily basis by healthy folk. And how those of us with advanced cancer have necessarily adapted our expectations (as have our families). Unable to rid our bodies of disease, we live with it; an uneasy cohabitation at best.

During my recent convalescence, David and I had some meaningful conversations about practical steps that could be taken to help me feel more in control again. Twice a month, someone will come to clean. David and I will begin marriage counseling with a therapist who is schooled in cancer related issues. Although not our first go around, we could really use a refresher. And, we are looking into boarding school for Peter’s junior and senior years of high school.

As strong as my resolve to continue surviving may be, the hard truth is it may not be doable. And, should my health deteriorate, it will be very difficult for David (who travels quite a bit for business) and Peter to get by. It would really ease my mind to know that Peter had an established community and a supportive environment to fall back on, particularly in the event of my passing. I feel there is real potential for the right boarding school to provide that.

And as for me? My anxiety has greatly lessened now that some proactive steps have been put in motion. Being able to get back on trial came as a great relief. It wasn’t just my physical self that was out of balance; I’d been long overdue for some major housekeeping in the emotional department as well.

32 responses to “Getting some things in order

  1. Linnea –
    Your post brought tears to my eyes. People don’t understand how emotionally draining it is to be living with a terminal illness. Knowing that things are ok for today, but that they will not stay that way. My husband goes to work every day and somehow that means (to other people) that things are alright. But they aren’t and they never will be. He is still fighting Stage IV Lung Cancer and at the moment he is stable. But living with cancer is not the same as beating (or surviving) cancer. When you are beating the odds (the “prognosis” for my husband was 6 months to 2 years – we will be at 3 in October) everyone forgets. That is everyone except for your family…

    You are right to put things in place that will ease your mind. Having someone come in and clean is a small thing that will help. Sending your son to boarding school…if it right for all of you, then it is good. Counseling can only give you the chance to explore your feelings in a safe environment. Please know that you are not alone in your feelings.

    • Robin, I do think that some of those who are in my inner circle have in their way become complacent; assuming that because I have survived for this long I will always do so. On the one hand, I appreciate the optimism. On the other hand, the reality of my situation never goes away for me; all I have to do is look to one side and there is the edge. It is hard, isn’t it? And part of what I also discussed with my thoracic social worker is how difficult it is to define my place in the world of ‘survivors’. Fortunately, I have been able to connect with quite a few others who are living with the same uncertainty, and we have been able to have some really meaningful dialogue (such as you and I are having now).

      Anyway, thank you for the support and know that I am here for you as well. May that three years become four and so on…


    • Robin, thanks for sharing the link–it will indeed be helpful to others. And as I said to Kimmywink, one of these days I’ve got to get in a post about all the other wonderful, heartfelt blogs out there.


      • Linnea –

        There are so many people who are dealing with cancer, you could spend days listing the great blogs. I don’t know that mine is any better (or worse) than any other. Mine has a different perspective than yours – I am the spouse. Your post got me thinking about being lost in that dark place and not feeling you can get out. I’ve been there. It isn’t a nice place to be. But we all make choices – you choose to keep fighting and my husband chooses to go to work each and every morning. I choose to write about my feelings, not only about Chris’ cancer and how we are dealing with it, but my life. It is an amazing thing, being able to connect with people all over who are dealing with similar situations. Your blog helps me to feel like I am not alone in this. I hope that mine does the same for someone (although I write about a lot of other things besides cancer).

        Here is one more posting that may help – it is titled: Helping a Family that has Cancer…

        Sending you strength and peace.

    • Robin, I thank you for the second link as well and I do think it is important to hear about things from the perspective of the caregiver. If you would like to call out any other blogs that have really struck a chord with you, please do. And again, thanks for sharing.


  2. Dearest Linnea,

    As someone who has suffered with panic attacks, I am awestruck by your strength. I know, if I found myself in your shoes, I would be curled up in bed unable to move. Yet, you appear to enjoy life to it’s fullest, as I wish everyone, including myself, would do without taking for granted those little moments that should never be missed by anyone.

    You are entitled to a melt down and wouldn’t be normal, under the circumstances, if you didn’t do so. So…I say, embrace the meltdown! You’ll feel better and it will motivate you to take your next steps forward! So May It Be!

    Blessings to you as always,


    • Tracy, I had a few panic attacks in my youth and the events of the other day likely qualified–I certainly had to reach for my inhaler. Frightening when it all comes crashing in on you so quickly! Fortunately, the moment passed and yet, I think I learned some things: our bodies have so many ways of making certain we are paying attention. Also, I would guess that with your deep appreciation of the workings of the world (magical and otherwise) you too embrace the moment. Onward!


  3. LInnea, we both know the demons of this disease all too well. And how everyone deals differently, yet I imagine somewhere within struggle with many of the same issues regardless of how they are dealt with. I always appreciate your very honest and real way of dealing with your disease. Ugh, I even hate to type those words. I am glad that you have your daughter (my youngest bio daughter Jesse is my “go to” girl, and it is a blessing to have someone in my life who can handle me even as she knows I’m not fixable). I am also glad to hear that you are taking steps to give yourself the best possible peace of mind in this situation. sending lots of love my friend, Lorraine

    • Lorraine, it is sometimes humbling (but oh so gratifying as well) to lean on our children. I’ve always said that the most important lessons I’ve learned have come from my experiences as a mother.

      And as for depression; it often had its way with me before my diagnosis so it is no surprise that occasionally it rears its ugly head now. These days, due to the liver issues, I am no longer taking an antidepressant (which was quite helpful for me)–so I think when the blues hit, they hit hard. There is always a moment when I think I just can’t wade through–and then, I do. That’s life Lorraine, is it not.

      love you,

  4. Linnea,
    I’ve been reading your blog for months. I found you via a twisted fate, due to a family member with lc. I am amazed at your talent in writing and in awe of your candor, warmth and class through it all. I wish you the absolute best in your continued efforts and please know that you have the support of people you don’t even know who have grown to care and love you through this wonderful blog. Thank you for being an inspiration by allowing us to know how you navigate through such a time.
    very fondly,

    • Dana, thanks for introducing yourself and I am sorry about that particular twist of fate–hell of a way to meet someone 🙂 I also thank you for your kind words and support. Every once in a while I question my decision to be so ‘public’ with my journey, but it is my real hope that it will make others feel less alone. Also, I have the (initially unanticipated) benefit of a growing community of my own, many of whom are ‘silent partners’ until and unless they come forward as you have. It is, I confess, a huge comfort.


  5. Sending HUGS and BLESSINGS your way Linnea

  6. Dear Linnea, I was/am so moved by your posting; I so appreciate your candor. As you know, I am also writing a blog ( – about living with stage iv lung cancer (now for over 4 years), and my postings are all pretty upbeat: optimistic and hopeful as I am beating the odds (like you). Reading your post helps me realize that anxiety and sadness are just under the surface. I think it’s important to acknowledge ALL our feelings, including the scary ones, and not sweep them away focusing on “gratitude” or on “the gifts of cancer.” Thank you for helping me accept ALL of myself. You’re my hero.
    fondly, Laurie

    • Ah Laurie, thanks. And yes, you are very upbeat (but that is a good thing). However, I can tell you from experience that when I share those times when I am low, the outpouring of support and understanding is remarkable. We each are who we are, and maybe having cancer just makes us more ourselves. Although primarily an optimist, I do take the plunge sometimes and want to let others know that it is ‘ok’–you can go there and come back again and frankly, it is part and parcel of this journey.

      So, keep being (all of) your (wonderful) self miss Laurie, but don’t stop dancing.


  7. Thanks for sharing all that Linnea. All your feelings would be expected under the circumstances and expressing them I’m sure has been a great relief and has led you to some clarity as to what to do next. A lesson we all should learn.
    Many Blessings and love to you and all your family.

  8. One would think “living with cancer” gets easier over time. I suppose it is more accurate to say the challenges evolve.

    Glad to hear you are back in fighting mode! (From the previous post.)

    One more thing, can you have grapefruit on LDK378?

    • Kimmy, and it will evolve differently for each of us. The truth is, I couldn’t have seen this far into the future when I was first diagnosed (me, 52? Impossible!) So–that is good news, but I still struggle occasionally with how to keep sure footing when the terrain is so unpredictable.

      BTW–I love your blog (and soon I plan to write about my fellow bloggers). You are such a fine writer, succinct but spot on.

      And no, grapefruit is verboten. Damn.


  9. love you mamma, and I’ll always be here when you need me ❤

    • You always have been girl, and hopefully I for you. It’s been a long time now–the Jemesii/Linnea connection (which began early on the morning of February 16th, 1984!).

      love, Mom

  10. “This being human is a guest house. Every morning is a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor…Welcome and entertain them all. Treat each guest honorably. The dark thought, the shame, the malice, meet them at the door laughing, and invite them in. Be grateful for whoever comes, because each has been sent as a guide from beyond.”
    ― Rumi
    At yoga, our instructor always reads something before we begin. This is one of her favorites…and mine. Feel the hugs that Will and I send to you, dear Linnea…..they come wrapped in love. Pat

    • Pat, that is a wonderful piece (so true) and I shall share it with my yoga instructor and class as well. And the hugs are swell!!

      love, L

  11. Hi Linnea-
    I am checking in a little late, but I had to think about your words for a bit. Your description of grief as a wave is apt; the wave is so far beyond anyone’s control, and like Rumi’s description, an arrival. You can’t simply shut the door on something so enormous. To function as you have, so well and for so long, amounts to more than any accomplishment I can think of. Living with my husband’s illness for 2.5 short years, I remember waking up every day and thinking: one more day for Chris, but also one less. I had to slap on a smile like a scar. It is hell on Earth to live this way, in such harsh consciousness. It is a wonder that you have come through with such grace and beauty.

    I have wept every day since October 30, 2011, but these days, the tears spring not from my own misery, but from imagining what Chris felt in all those months, fighting and then letting go, eventually coming to know his that time was at an end, and that he had to leave us. He kept his sights on me and the kids, just as you are doing with your spouse and your children. But who knows Linnea, you could be here for a very long while. That’s what all of us who love you are hoping for, every minute.
    Love and strength to you, dear friend,

    • Joan, your comment touches my heart on so many levels. You are a wonderful person and I am loathe to think of you crying every day. And yet I do not wonder–as it is obvious you had an incredibly tight bond with Chris. “I had to slap on a smile like a scar” is a highly evocative description of what you were going through–words beautiful in their way but so very painful.

      My guess is that Chris made a sort of peace with his leaving. It is a process that begins almost as soon as you are diagnosed. Even as we fight to stay we are preparing to leave–you have to believe this. And we are sad, of course, but we are also okay. We are on the same journey as everyone else, we just know a bit more about our personal itinerary. If anything, it sharpens our perceptions and we cram so very much into the time that is left. So, cherish your memories and keep on living–that is an image that likely provided Chris with much comfort.

      I love you Joan,

  12. Thanks for that guess, Linnea. It does help. When Chris could no longer walk, helpless in his bed, I used to take his face in my hands and ask him “Who loves you more than me?” and he would answer “Nobody.” A few years earlier, Aspie that he was, we would have argued about the grammatical incorrectness of that question. Idiots! We were definitely idiots, back then.
    As the LC blogger Doreen Schmitt used to sign off:
    Love you more,

  13. Enjoy today and you are my inspiration. Tina LDK378 patient Full Brain Radiation Survivor!

  14. Linnea, thank you for being out there! Though I wish I could say my anxiety has lowered from finding you. But then again blogging is about sharing what we know. Here I was just posting happily about my post lung cancer surgery CT scan finding no evidence of disease and then wow! I read your post surgery story.
    I know I hesitated to use the word survivor in my blog because it has only been a story of months but after all we are all a collage of survivors. Thank you for sharing you courage and most importantly reminding me that living as a cancer survivor is always with eyes wide open.

  15. Linnea , please excuse if this is a duplicate I always find myself Word Press challenged.

    Thank you for being out there! Though my anxiety was much less celebrating no evidence of lung cancer following my four month post surgery CT scan until I read your about me section and your story. Wow! Blogging is the only way we can share what surviving means and does not mean.

    Your courage is inspirational and most importantly you have shocked me into a benchmark moment here, living as a lung cancer survivor is always about living with eyes wide open,

    Though just a newbie as a survivor, I took the liberty of recommending your blog in my blog’s sidebar.


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