A New Four Letter Word

We are starting to learn more about next steps in treatment. We knew that radiation therapy would likely be next, but we weren’t sure what it would entail. We got some details on Friday and had to make some tough decisions.

We were told that there were two main options in my case: 1) whole brain radiation and 2)targeted radio-surgery to the site of the tumor. Whole brain radiation, as the name suggests, involves radiating the whole brain, so that if there are any stray cancer cells outside of the tumor site, it would treat those too. Unfortunately, there are some major side effects including irreversible cognitive difficulties (short term memory loss, difficulty processing information). With option 2, cognitive difficulties are far less common, and apparently not a major concern. But it only treats the site of the tumor so if there are some stray cancer cells, it won’t get those. It was a hard decision to make, and originally, I was leaning towards whole brain radiation because even though I do not want to suffer from irreversible brain damage, I REALLY don’t ever want to have cancer again. (what a choice to have to make!) But after talking to several doctors about my options, it seemed clear that the tumor I had was very aggressive and it made sense to target it specifically again so it did not come back. Plus, having radio-surgery now does not mean that whole brain radiation is ruled out as a future treatment if necessary (if any new growths appeared in an MRI scan).

Friends, I have done my best to stay positive and strong in the face of insane challenges, and I feel that I’m reaching a sort of threshold. I am close to my limit. The radio-surgery involves  a surgeon sticking pins into my skull and attaching a frame of sorts to my head so that I am unable to move at all during the procedure. They do not use general anaesthetic for this procedure, just local, so I will be lucid during the process. That’s it, I’m at my limit. Someone is going to attach pins to my skull while I am awake. I have felt fear this year many times. But I am feeling it in a very intense way about this procedure. I try to keep it at bay, but it has become a real presence in my life, a new four letter word: fear. There is the fear of pain and side effects, but also the fear that even if I am doing my absolute best to fight this disease, it may not be enough. For the last few days, I’ve been easily overcome with emotion, bursting into tears when I think about this past year and the weeks ahead. I am that woman crying into her food at the restaurant, the one crying as she walks down the street. I’m trying to keep it together, but it’s hard. When I feel overcome with emotion, I try to focus on the present and the goodness of the moment: the wind on my face, the taste of delicious food, the warmth of a loving family. I know it is normal to be afraid and to feel sad, and it’s probably good to have a few good cries.

Thank you, friends, for letting this blog be a space where I can be honest about this experience. I believe that fear is normal, and that it can be harnessed. Just writing about it, and getting it out, helps me to feel stronger. With your help, I will turn fear into another four letter word: hope.

Speaking of hope, check out these photos:

Little dinosaur.

Little dinosaur.

Mommy penguin. Baby dinosaur. (my face still looks a little swollen, and my smile looks a bit off, BUT I am dressed as a penguin!)

Mommy penguin. Baby dinosaur. (my face still looks a little swollen, and my smile looks a bit off, BUT I am dressed as a penguin!)

Nate lovin' life.

Nate lovin’ life.

Me, looking more like myself. Thanks to T'ai!

Me, looking more like myself. Thanks to T’ai!

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About Naomi

Writing about health/wellness and motherhood at www.everybodyhearts.com and academia and research at www.tracingmemory.com
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25 Responses to A New Four Letter Word

  1. hensleton says:

    Another amazingly honest post. I hate that you are having to deal with this and can’t even imagine this level of fear (It’s your head dammit!), but I know how strong and resilient you are and you will get through this. Just admitting you are afraid is an incredible act of courage and strength. Oh, and you look like a movie star, so there’s that. So, so much love to you!!!

  2. hensleton says:

    “Life is both dreadful and wonderful…How can I smile when I am filled with so much sorrow? It is natural–you need to smile to your sorrow because you are more than your sorrow.”
    ― Thích Nhất Hạnh

  3. I love you and feel for all of you. Best of luck. Continued strength even though it’s so horrible.
    Love Arlene

  4. Lillian Tolensky says:

    When I read what your options are for treatment, I can empathize with the emotions that you are feeling. I would be petrified as well. You have to trust your doctors and believe that they know what the positive outcomes are for each of the treatments available. You are very brave and you know that it is better to be able to cry (anywhere that you want to) and not have to justify the reasons for your tears and not keep your emotions bottled up. Stay strong – we support you!

  5. snodv says:

    I am sending you all the positive energy I can muster. You are an inspiration.

  6. I’m sending you all the positive energy I can muster. Fear is ok. Being away it’s there is good, because it means you can see it, and you are not letting it make decisions for you.
    I really wish you all the best.

  7. Just wanted to add to the mix another shout of Courage! Even your telling of your situation, and your choices, is so brave. You are an amazing woman, Naomi. I, like all of your friends and your wonderful family, am sending hopes and wishes and energy to you. You can bear the pins– I’m sure of it– but I’m really sorry that you have to.

  8. Duff says:

    Naomi,

    I cant imagine how hard it must be to have to go back in for radiation especially after all that you have gone through already. It does sound like you are making good decisions moving forward and know that as hard as it is, this too shall pass.
    Im happy you are finding joy in spending time with Nate and Mitch.
    Know that we are thinking of you always and sending warm healing energy.

    Duff and Annie

  9. dejawoo2 says:

    I was playing “Words with Friends” when I got your latest blog. Thought you’d like to know that FEAR is 7 points and HOPE is 9. Let’s put HOPE on a triple word and best the crap out of fear.

  10. leila says:

    I love you. And being scared but still full of hope sounds just right. And I just came back with a cupcake to help you remember the sweetest parts of life. I will deliver it soon. ❤

  11. Mary says:

    For you, Mitchell and Nate…with love, from us:

  12. Yulia says:

    Dear Naomi, I just hate to learn that you have to deal with the insane options. Just remember the doctors usually do know if it is ok not to have anesthetic so you WILL be ok. I wish my English was better but I am very sure that you gonna curb, tame, beat, burn, kill the stubborn thing, just keep doing what you have been doing. I wish I could somehow CALM YOUR FEAR and GROW YOUR HOPE, but you are the bravest and the smartest and the kindest woman alive, and you will win this battle, and then the war. it is normal to be afraid and you have a myriad of reasons to stay positive and HOPEfull. I am sending you hugs, many many many hugs. You are an inspiration! LOVE

  13. Kathy says:

    Naomi, I just wanted to send you some hugs during this difficult time. We are all rooting for you and very hopeful for your full recovery.

    P.S. Nate is so adorable. I love the pics. 🙂

  14. JJ+ VC says:

    Sending you all our love and positive energy.

  15. Estarisa Laye says:

    Dear Naomi,
    The Laye Family sends lots if love and healing wishes to you in your next set of challenges. May you continue to conquer each one as you journey toward renewed health. Thank you for sharing on so many levels. As you inspire all of us, so may you be inspired to believe in healing. The photos are wonderful! Nate is a beautiful child and you look radiant despite what you have been through. Love & cvoxoxox Estarisa & Ron & Family

  16. Marilyn says:

    Dear Naomi, each time I see a new post from you I hold my breath until I begin to read. This time I continued to hold my breath as I read through to the end. I believe that hope, love and the best doctors will help you battle this great obstacle, and you will be well once again. You have been and continue to be so courageous. Please know you are loved and we think of you and Mitchell (and little Nate) often. We send you big hugs and loving thoughts. Love Mike and Marilyn

  17. Yulia says:

    Trick-or-treat!!!
    Are you guys going out with Nate tonight? The costume is way too cute to stay in 🙂

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