Friday, December 2, 2011

Growing Pains

My emotions have been up and down so much for the past couple of weeks.

The slap-in-the-face shock of the initial diagnosis, the dazed-and-glazed feeling of information overload, the slow-burn-panic of getting test after test, scan after scan, and waiting for results.

I can go from 'Yay Team We're Going To Beat This!' to knee buckling fear in the blink of an eye.  It's exhausting.

There are moments of profound gratitude - deeper than I've ever experienced before - as I look into my kids' eyes and simply wonder at the beauty of their existence, of how truly lucky I am.   Twenty minutes later I'm watching them play dress up together, giggling and worry-free, and I sink into a sadness so deep I feel I may never get out.

But, of course, I do.

Up and down I go, travelling this unknown road, and marveling at the unfamiliar sign posts; some are staggeringly beautiful, others fill my soul with fear.   It's all so new.

I cherish the moments of sweetness, of peace.  I don't care about mundane worries anymore, and there is a feeling of freedom in that.  I spent ten minutes marveling at my son's long eyelashes yesterday, lost in my deep love for him.

That would not have happened before.  

We had a couple of big decisions to make:  (1) whether or not to have surgery to remove the secondary tumor in my neck (the primary tumor was in my tonsil and removed during the tonsillectomy) before starting radiation and chemotherapy; and (2) where to receive treatment - the world class cancer facility 20 minutes from our house that treats only cancer but that doesn't see many head/neck cancers, or the world class facility in Boston that sees only head/neck cancers, but will be difficult to get to everyday for radiation.

Today we consulted with a team of Boston doctors who work exclusively with head/neck cancers.   I walked into that appointment feeling overwhelmed, lost and more than a little fearful and confused.

I left the appointment feeling lighter, hopeful, confident.  I walked out with a plan. I'm always better when I have a plan.

Not only do these doctors and nurses really know their stuff, they are full of compassion and humor.  The humor part matters to me.  A lot.  We talked for four hours like human beings, not like doctors talking at a patient.  

I do not need surgery before beginning chemotherapy and radiation, which is great news.  I was worried about what the results of my recent scans would show, and my chest CT scan was clear, so the cancer didn't spread to my lungs, which is where it goes after the lymph nodes if it spreads.   I sent more than a few prayers of thanks up for that one.

I can receive a different type of chemo than I had discussed with the other oncologists; one that has side effects that are MUCH less stressful on my body.  I won't lose my hair.  I'm embarrassed to admit how much relief I felt when I heard that, but it's the truth.

I will need the feeding tube in my stomach, but not before treatment begins, like the other team had recommended.  It will be put in about halfway through treatment, unless I need it earlier.  

Thank heaven for second opinions.  I'm so glad we took the time to get more information, that we didn't reject the idea of going into the city just because it's inconvenient.  

And I realized something today, sitting in the exam room, chatting with the physicians.  I'm adapting.  Eight weeks ago I was so nervous to go to my primary care physician just to have a simple check-up that my blood pressure skyrocketed.  Today I'm sitting in a room full of cancer doctors with no butterflies in my stomach.  I'm even laughing.

I can feel it - the stretching and growing in uncomfortable ways.  I don't like the pain, of course I don't, but I know that I learn the most when I'm stretching myself into places I don't like to go.   I spent so much of my life in fear, and here I am smack dab in the middle of it and I'm okay

The human spirit is a wondrous thing.


  1. This just goes to show how important it is to get a second opinion, and that it's OKAY to question your doctors if you don't like what you hear! I think we're programmed to take what our doctors say as set in stone, sometimes. Lots of love to you Ellie, thank you so much for being open and keeping us posted.

  2. Awesome. Such good stuff here, Ellie. xoxo

  3. I'm so relieved by this second opinion, I'm a little overcome. I don't know if you realize how much you've been on my mind lately.

    Love you.

  4. Yay that it's contained! And Yay! that you found a wonderful team of nurses and docs!

    Thinking of you, Ellie.

  5. I am happy to hear that you are okay. I know that I want you to be okay, and I think you will be okay, but it's nice to hear it from you as well!

    I didn't lose my hair, although it did thin. I did not suffer much sickness or fatigue (the meds helped to take care of that), but I do not envy you the feeding tube. I'm so glad that the second opinion recommended that you wait until midway to have that put in.

  6. Ellie,

    Four weeks ago my best friend died suddenly at age 40. When I read your recent posts, I am struck by how similar the grieving/adapting process has been. I struggle to find the good things about it, but when I do see them, I am so struck by them that I am immobilized. This post gives me something like hope that I can grow from this, even though right now it seems inconceivable.

  7. I can feel the bravery radiating off the words on the page, and I almost feel like I am gaining strength just reading them and absorbing them from you. Wow, what a woman you are. Praying for you as you take each step on this journey.

  8. Shit, Ellie. Everytime I read your posts the last few days, I get all weepy. It's all kinds of weepy: Unfairness, hope, inspiration, you name it. You fill up my heart with the good stuff. Thank you for continuing to keep us posted. I think of you so much of the time, it would probably give you pause. ; ) I love you and am so gratified by the hopeful news you continue to receive. I know it is a long road, but it will be filled with humor and hope, as well as the tough stuff. I love you to pieces, beautiful soul. xoxo

  9. So happy for the good news. That you are finding highs at all is a testament to your character. The first opinion my husband had involved removing all the lymph nodes from his face, but the second opinion was much less intrusive and only required lymph nodes from his neck to be removed. Whew, I feel your deep sigh.

  10. So happy to hear that good news has come with second opinions. Those highs and lows will always be hard to take and hard to get out of. So wonderful to hear that you do have good things in your life to hold on to and that you are okay.

    Take car and stay strong.


  11. I am so incredibly grateful for this good news on your chest scan! You just blow me away with your guts about everything in life and you inspire me in my own walk toward sobriety. Keep it up CHICK! You rock!!!!!!!!!!!

  12. Oh man. So sorry about your news, so glad you got a second opinion. Fingers crossed and thinking of you.

  13. i love the honesty and perspective and self awareness you have in this post. Thank you so much for inviting us along this journey with you. I think many of us will grow in new ways as well. Stretching our hearts and minds and compassion in different ways.

  14. Keeping you in my thoughts and prayers...

    Am happy to read in this update that it is treatable and the treatment is near to you, not thousands of mile and far far away.
    Peace and love,
    Siggi in Downeast Maine

  15. You will never know me, I think about you all the time. This is a privilege to witness. Praying for you. Xo

  16. I feel guilty because my case was so different than yours... My diagnosis was so different, so it feels like I'm trespassing on your experience to say this... But this resonates so much. The stretching that happens. The need to have not just a good doctor but a human doctor. The empowerment of looking beyond the care right in front of me and giving myself all the options I could and then finding a plan that I knew was the best. Praying for you here and I'm so glad you've found doctors that know the stuff they need to know to treat this with a path that will be less burdensome.

  17. Oh Ellie, must you be so amazingly fabulous and wonderful? Hang in there for the tough moments and savor the sweet ones (I know you already are - but what else am I to say?)
    Absolutely the right decision to head to the city. No doubt. Worth every moment in traffic, every penny of gas, and every irritating parking situation - I promise. Love, Love, Love to you.

  18. I once heard that while there is often no way to know that we have made the "right" decision, we can always make decisions in the right way: learning all we can, praying over it, bouncing the matter off of people we trust, people who have wisdom, knowledge, experience ... then, finally, discerning how we feel before choosing.

    Glad you got the second opinion! Glad for the hope and confidence this decision gives you for going forward. It may well make all the difference down the road, too. Hang in there, Ellie!

  19. You do the best you can with the information given to you, and check all avenues. God bless.

  20. I lost my hair, which was almost worse than losing my breast.

    No matter what you decide, you will be fine.

  21. Wow. Just ... wow. So raw, so naked, so beautiful. Thank you for sharing your experience honestly - throughout - without sugar-coating.

    I'm inclined to think that the inner healing process you have been going through since you got into recovery has prepared you for the ordeal you are now facing. Imagine trying to deal with this while you were still in addiction. Indeed, there is much for which to be grateful.

    Your story has inspired me, and continues to do so. I marvel at your depth of peace - and know that it is because you have tapped into a power greater than yourself. That power is the anchor.

    Real healing flows from the inside out.
    Blessing and complete healing be yours!

  22. Great post Ellie. I'm so happy it didn't spread to your lungs. You're in my thoughts and prayers.


  23. Such good news! YAY for hair! (because you really do have great hair.)


  24. "The human spirit is a wondrous thing."
    Indeed it is...
    hugs and prayers

  25. Ellie. Your posts are medicinal. I swear. I'm crying about your story when I read each update but I leave feeling so inspired and present and hopeful and faithful and life-filled and all that stuff. You are such an incredible courageous, yep, so freakin' smart and aware and I hope you feel that there are so many people walking this path with you near and far. I feel with you. I hope you feel it. So happy about that hair. I would feel the exact same way. But you're so truly beautiful through and through hair doesn't really make a difference but I'm so damn happy for you. Yay Boston doctors!!

  26. The humor part mattered to me, too and I'm glad I chose the Boston hospital over the closer one where my primary care doc is. Every single person at the Boston hospital made things so much easier to deal with. Taking the T in...that was a pain and kind of a no-no, but such is life.

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