Breathe in peace. Breathe out joy.

I hadn’t planned to write a blog post today. It seemed like an expenditure of too much energy, something I have so little of these days. But you wonderful people have been so kind and supportive all these years and months. The least I can do is keep you in the loop through this final stretch.

It’s been a really tough week for me. I’m not sure whether it’s the steroid dose reduction (I’m now at 0.5mg every other day and can finally start to see my own face looking back at me from the mirror!) or the many stairs I climbed in Lake Arrowhead last weekend plus all the time spent sitting in the car, but I’ve been in a lot of pain — in my legs, arm and shoulder, especially. 

The rapidity with which I lost function in my left arm also has had me thinking a lot about the next phase in the progression of this disease. I feel like I don’t really even need MRIs at this point to tell me what my body is already telling me, and yesterday’s scan confirmed what I already knew: My tumor is growing fast. Short of an unprecedented response to the immunotherapy, which I started yesterday, my time is waning. 

I’ve shed a lot of tears over the past week as I’ve worked to stem the rising tide of panic thinking about how intolerable life will become without the ability to dress myself, walk, or perform other basic functions.

Fortunately, yesterday brought a little relief in this regard. My oncologist told me that moving forward with the End of Life Option Act (EOLOA) is not incompatible with continuing with the immunotherapy treatment. It will be a number of weeks until we’re able to determine whether the treatment is working and worth any side effects I begin to experience. In the meantime, however, it gives me great peace of mind to know that if I begin to decline more rapidly and/or experience intolerable pain/other symptoms, I’ll have the option to avoid prolonged suffering (both my own and that of those closest to me).

Mike and I watched an episode of the Netflix show Grace and Frankie yesterday while I got my infusions. A friend of Grace and Frankie’s, who has terminal cancer, throws a big party to celebrate her wonderful friendships and time on this earth, just before ending her life on her own terms. Her joie de vivre in her final moments is just what I hope to achieve, regardless of how the end comes for me. I plan to adopt her manta, too: Breathe in peace. Breathe out joy.

How can you help it when there are views like this to enjoy?

(None of which is to say that there won’t be lots more tears, as well. This dying business is not for the faint of heart.)

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9 thoughts on “Breathe in peace. Breathe out joy.

  1. I’m so glad I met you Naomi, even if the circumstances that I did was painful and hard.
    (Sruli..) I don’t want to post anything that sounds like a platitude but really, reading your posts have been inspiring to me – the dignity and positive thoughts and energy that you exude is something I really admire. Sending you love, blessings and peace.
    Love,
    Chanie

    • I’m so glad to have met you, too, Chanie. You are such a kind and wonderful soul and you and your family certainly set an example for me of finding joy even amid tragedy. Thanks for your message. I hope all is well with you!

  2. Naomi,
    I know that we only know each other as casual acquaintances in high school, but I have been watching your story, although silently. I have a profound respected and inherent love for you and your husband. You both have an amazing amount of strength and the way you have chosen to handle this situation is something I’m not sure I could do. However, I am so happy to have met you and known you in my life. You are truly beautiful and that infectious smile you have always had stays on your face. If you’ve ever had a horrible, no-good, very bad day, I have never seen it take you and put you down. I admire you so greatly and I will continue to follow your journey. And I will be a bit more vocal in how much you mean to me in my life. Thank you for reading this and I have nothing but love for you!

    Melody Watkins

    • Thank you so much for reaching out, Melody. Your kind words and support mean more than you know. Please do stay in touch and know that I read and value every message even if I can’t respond all the time. 💜

  3.  Dear Naomi,  I’m touched by your courage, feelings, openness. love, honesty, inregard to what you are going through.  I love you, proud of you. uphold yourdignity and grace to continue on. You will always be admired and rememberedby many, and me of course.  I do keep you in my prayer.  With much love.. Lillian Sichler

    From: i am naomis brain To: lillian_sichler@yahoo.com Sent: Thursday, August 18, 2016 5:31 PM Subject: [New post] Breathe in peace. Breathe out joy. #yiv4044646399 a:hover {color:red;}#yiv4044646399 a {text-decoration:none;color:#0088cc;}#yiv4044646399 a.yiv4044646399primaryactionlink:link, #yiv4044646399 a.yiv4044646399primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv4044646399 a.yiv4044646399primaryactionlink:hover, #yiv4044646399 a.yiv4044646399primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv4044646399 WordPress.com | naomi sichler posted: “I hadn’t planned to write a blog post today. It seemed like an expenditure of too much energy, something I have so little of these days. But you wonderful people have been so kind and supportive all these years and months. The least I can do is keep you i” | |

  4. Dear Naomi-i was brought to tears while reading the latest post. Please know that we are praying for you every day and it breaks my heart to not only read of the pain,but also of the strength and courage that you are fighting this battle with. We will continue to cheer you on-you are an inspiration to us all. Love you

  5. Naomi,

    I don’t know if you even know who I am. Your dad and I were neighbors when we were kids. I have been so touched by your bravery and your willingness to share your journey. I wish you peace and happiness.

    Barbara Wafer

  6. Naomi, Hi there, thanks for keeping me in the loop with your updates/blogs, I’m honored. I just wanted to reach out, as I’ve tried a few times (in drafts) to say hi. I’ve been thinking about you a lot the last couple years really, and just wanted to know I try to put out positive thoughts and send prayers (atheist prayers, but nonetheless). You’re a brave soul and I’m honored to know someone of such resilience and strong character.

    I’m glad you and Andrea are still friends, I’ve seen her in a few of your pics and that’s a cool thing, you’re both amazing humans. Anyhow, was great getting to see you, along with your great parents, albeit tragic circumstances at Walker’s memorial. It was nice that Janine and your Dad struck an accord and talked for a while. He’s a cool dude and I remember Walker idolizing him and his pepper farming innovation. Janine and I are actually going to Santa Fe this fall, can’t wait for the food and coffee.

    I’ll hold myself back from any platitudes about keeping your head up (though they come-by honestly), as I know you’re in a profoundly different situation than I could ever understand. But please know I’ve thought a lot about you these last few years and I always read your posts, which I think so highly of in that you’re confronting the disease and being public about it. Not sure I’m articulating that, but I think how you handled this is exemplary. So I send my positive prayers, as well as asking my Mom up in heaven to do the same from there (she’s got some sway on things down here, I’ve seen it). Here in Culver City if you need a quick hand with anything as a nearby resource.

    Thanks Naomi- you’re a superstar, gabe

    Gabe 310-480-6357

    >

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