Thursday, March 15, 2012

Just An Update on Where My Head And My Heart Are These Days

I don't have any profound writing in me today, so this is just an update.

We consulted with the Head & Neck Oncology Surgeon (one of the best in the country) last Friday, and we are all in agreement that the remaining lump in my neck needs to be surgically removed.  I'm four weeks post treatment now, and it is still the size of a small almond.

The doctor explained that this surgery is made a little trickier because we're doing it after radiation, so the skin and the tissues involved aren't in tip-top shape; this will likely prolong my recovery period slightly, too.   He then went on to say quite casually that he will remove the lump, the lymph nodes surrounding the lump, and my jugular vein on that side.

My brain went white at this news, and I placed a hand gingerly on my neck.

"Isn't the jugular vein something you need?"  I asked, fearfully.

"Nope," he answered, calmly. "You don't need two, and we're just taking one of them. In fact, it used to be standard procedure to remove the jugular vein during this procedure, now we only do it depending on the placement of the mass".

Right. Whew. For a second I was concerned.   READ:  sarcasm

I will have another CT scan and pre-op physical the week before the surgery, which is scheduled for April 4th. The external skin on my neck is completely healed, at least as far as I can see, but I still have a lot of internal mouth/throat pain from sores/burns, so those will need to heal up more for us to stay on track and have surgery on the 4th.

I will be in the hospital for two or three days, and then likely in full recovery mode for a couple of weeks after that.

These are all the facts, all straightforward and simple-sounding.  They don't touch how I feel about all this, which I'm still trying to sort through.

I'm mostly tired. Emotionally tired. I'm tired of feeling like there's just one more thing between me and recovery.  I'm tired of worrying.  The fact that the chemo and radiation didn't fully destroy the tumor worries me.   The surgery, while I'm in the best hands possible, sounds draconian and scary to me.   The voices that whisper bad outcomes to me are harder to keep at bay.  

I'm tired of pain. The inside of my mouth and throat are in near-constant pain.  The medication I take helps a lot, but it doesn't get rid of all of it (which I'm grateful for, actually, because I do not feel like a drooling vegetable on this pain medication).   I still receive most of my calories through the feeding tube, but on occasion I have a drinkable yogurt, cream of wheat or some finely diced scrambled eggs.    I can only drink water and - interestingly - Pepsi - comfortably.

Basically, this has been going on since early October (when I found the lump) and I'm Just. Plain. Tired.

It's hard to sustain strength, hope and positivity that long.   The longer this goes on, the more my worrying gets a foothold.  Did I mention I'm also tired of worrying?

There is one thing I'm not, though, and for this I'm grateful.  Despite how this post may sound, I'm not feeling sorry for myself ... feeling like "why me?".    I haven't felt that way once through this whole thing.   It's my turn, and I'm going to stand up and face it without whining about the unfairness of it all.  This sort of thing is NEVER fair - why would it be more fair to wish that it happened to someone other than me?

And so I'm in a waiting period, again.  I'm hoping that my mouth/throat do heal enough to allow me to have surgery on the 4th.  In the meantime, I will do what I've been doing: sleeping, reading, making jewelry and praying.  

I did end up losing most of my hair in the end.  After radiation was complete, which was a real kick-in-the-pants.  I'm not bald on top, but it's so thin there is very little I can do with it but wait for it to grow out.  There is too much hair on top for a wig, but not enough hair on the bottom to NOT look like a cancer patient.

For some reason I wrote that last paragraph with tears streaming down my face.  That's how close to the edge I am these days.

On a positive note, though?  Yesterday my Mom took me shopping and I slip easily into a size that I haven't worn since high school.  I'm not gaunt - at least not yet - but I am damn skinny and it's nice to walk into a store and have every. damn. thing. look good on me.

So that is where I am.  Thank you all for listening to me, for hanging in there with me.  It helps to vent it all here, although I'm also tired of coming here and writing about cancer.

Someday I will write about what it's like on the other side of cancer, though, right?  Right?

That is my wish.


  1. Yes you certainly will. Many prayers to you. I'm so glad you shared your story, and the truth of where you are at. We are here with you.


  2. Oh honey. Hugs and more hugs. I can only imagine how mentally exhausting this must be, not to mention physically. We will help as much as we can to pull you over to the other side of cancer. We want you to be there too.

  3. Oh, Ellie, I am praying for you and thinking of you. Know that there's so many people out there sending you strength to help carry you along. Alongside the AMAZING strength you have already. I look forward to reading what you write about life on the other side of cancer.

  4. You'll make it through this. It's just a lot of bs to deal with first, but it is going to be ok. One day at a time.

  5. Huge hugs and lots of prayers. Know that you are surrounded by love.

  6. Yes. Yes. And absolutely YES!

    Still thinking of you and praying for you.
    Can't wait to hear about the jewelry you've been working on :)

  7. I love how surgeons talk about removing a body part like they are changing the batteries in a flashlight! "Oh, we used to use a chainsaw, that was the standard procedure, but now we just tie one end of the tumor to a door and slam it shut!" They don't always realize how scary they sound, at least I hope they don't. I will keep on praying for you.

  8. Lots of love and hugs and positive thoughts coming this way. And you know you have another angel looking over your shoulder now, as well. You will get through to the other side.

  9. You will. You are strong and wonderful and beautiful. I have been thinking about you so much. So much love and light coming your way. xoxo

  10. A couple of months ago a friend's dog was in a fight and sustained a terrible bite to the neck. The result was one lost jugular for him. At the time I goggled and couldn't see how that was possible. Then I wondered if it was true for all animals with jugular veins and I guess it is. Doesn't make it any less frightening to think about, though, as far as I'm concerned. Dogs aren't people but we sometimes test things on them so I can tell you that he's doing great. The vet told us "the body finds a work around." Our bodies are smart. Your body will start to use its powers for good I'm sure. I'll be thinking of you.

  11. Yes you will!! There will be so much to write about write about on the other side. It is coming.

    Sending hugs and praying for you!

  12. You certainly will. And while I don't wish this had happened to someone else, I do wish it happened to no one at all. (We're going to need to see some of those new outfits, when you're up to it ;-)

  13. I want to tell ya that my friend A said similar during her cancer treatments. She didn't think "why me" - not once. In fact, she thought "why NOT me" as she had an amazing support system and relationship with God and some of the best docs in the world. Glad for you being so graceful.

  14. pro·found (from the online dictionary)
    1. Situated at, extending to, or coming from a great depth; deep.
    2. Coming as if from the depths of one's being
    3. Thoroughgoing; far-reaching:
    4. Penetrating beyond what is superficial or obvious:

    Friend, you are always profound! Praying for healing in your mouth/throat, strength for the next hurdle, and that you'll have a continued desire to keep writing with such grace and profundity on the other side of cancer!

  15. Through your blog you have touched me -- a nobody lurker -- so much. Your journey through life has covered great ground, filled with love and a search for wisdom along the way. I'm praying for you... for your healing and for the peace that transcends all understanding. I have felt the power of Christ absolutely take away my own fear at a very fearful moment of my life, and I pray that same peace for you now.

    "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4:6, 7 NIV)

    God will carry you through. Just keep holding on. <3

  16. Keep holding on. You'll be there soon.

  17. Wishing you all the are amazing!

  18. Praying for you and YES you will be writing about something else soon.

  19. right, the answer is exactly that "right". You are an amazing person Ellie. I would never pretend to empathize but I do sympathize with your frustration and that feeling of "Can't we just get this over with and move on to the next portion of the program people?!"

    Fuck Cancer and you did and you will continue to do so.

    xoxoxoo from across the land.

  20. Hang in there, Ellie! Glad to see an update from you. Saying a prayer for you and your family. You will soon be on the "other" side of this!

  21. That's right. Yes. You WILL write about more than cancer, you WILL get to the other side of all those "just one more thing"s, you WILL move on to more, much more. And you WILL get your life back ... well, better than ever because you have been through the fire and have known the presence of One far greater than you, walking through it with you.

    So pleased to know how you are BEING (as opposed to doing) - know that you will soon be crossing the finish line. . . .one day at a time. :)

  22. You will make it through to the other side! Your attitude is totally amazing.

    Always thinking of you!



  23. Oh my took me from tears to laughter when you wrote about being so damn skinny and trying on clothes. As a girl who has to work so hard on her weight that made me laugh. You deserve some perk after all this awful stuff. will write from the other side at some point and I can't wait to hear what you have to say.

    I'm glad you're making jewelry again. I'll be placing some orders soon.

    Hugs, love and healing prayers always.
    Atomic Momma

  24. I can only begin to imagine how tiring/painful/scary this has all been but your attitude is so perfectly upbeat in your posts.

    Inspires a lot of people like me to really root for and admire you. You so rock :)Keeping the faith you are going to come out the other end just fine. If not improved. Just sorry you have had to go through it to begin with.

    Just keep swimming, just keep swimming...

    Your comment "it's nice to walk into a store and have every. damn. thing. look good on me." made me smile :) You have freaking EARNED it my dear, keep on counting the positives as you have.

    Cyber hug to you.

  25. I'm amazed how far you've come. Oh how I wish I could take the pain away as I read your words.
    Love and strength to you and your family.
    June B

  26. Yes, Ellie, you will soon write about what it is like on the "other side of cancer." And we will all rejoice with you. Don't look at the entire picture. Just look at one small piece at a time, and remember: we are given strength for the task just ahead of us.
    Lee Ann

  27. So I just read Heather's post and was in tears, then I came to more tears. I have a cold too so the sniveling at my desk is obviously very attractive. As always, thinking about you and praying for your continued strength. So grateful to found this put so many things into perspective for me!

  28. I'm just so pissed off at that little almond. Love you Ellie.

  29. You will be a shining example of fortitude and determination with grace. Thinking of you and sending love every day from the wilds of northern California.

  30. RIGHT you will write on the other side, wearing fabulous clothes most of us can only dream about and look on the bright side you will be less appealing to Vampires in the meantime ;)

  31. Thanks for the update, Ellie. Sorry to hear you need surgery now, too. Damn.

    Sorry, too, that this is so tiring. So much letting go. So much to accept. So much to just trust.

    The hair loss was traumatic for Mom. The wig shop people wanted to buzz cut what was left and she wouldn't let them. I say go ahead and look like a cancer patient. Be who you are. That's OK. Your beauty will shine through whatever look you don! And at least you get to wear skinny clothes now! I only dream of that.

    Keep looking forward, Ellie. You've had such a great attitude through all this. Even a tiny bit of hope makes a big difference. Hang in there!

    Prayers for you from Missouri. All shall be well ...

  32. I had no idea that you can actually have one of your jugular veins removed! I am thinking of you & praying for your recovery! Hang in there...

  33. To correct your first line you still amaze us with your profound thoughts and words. You express part of this journey that many of us struggle with and just can't get into words. For those on the other side of the camp cancer fence it's hard for us to relay what it's really like in here. Glad you are enjoying your babies' simple pleasures. We get through our days noticing little things we took for granted like a beautiful sunrise. Before we just expected it to be there. Thinking of you in the next round of attack on that damn almond! xx S&K

  34. I've been thinking about you and i'm so sorry to hear about the surgery. I wanted to write because i'm an orthodox jew and wear a wig for religious reasons, with my own full head of hair underneath. if you're interested in a wig, orthodox women wear really nice ones and I would be happy to ask around for someone in you're area. You can reach me at

  35. You will write about life after cancer. You will. You will. Just hold on. Sending healing thoughts your way. Lots of love to you.

  36. Yes Ellie. You will be on the other side of cancer. You will. So much ahead of you but also so much behind. You've endured sooooooo much. And you will endure more. Because you can.

    We went to Ojai yesterday and found a new magical place for CA '12. Last weekend in September. Can't wait to see you there....

    In the meantime, do we need to film another rap for you?


    Love you sister...


  37. Yes. Someday you will write from the other side, and all of this will seem further away than you can imagine right now... until you read someone else's exquisite words and it all comes tumbling back.

    It has been a long time, and you are doing it incredibly well, and with such grace. Thanks for sharing it all with us.

    Love to you...

  38. Thanks, as always, for your honesty. You'll be on the other side of this soon. I just know. LOVE YOU SO!