Tuesday, January 3, 2012

No Hopeful Flourish In This Post. Otherwise Known As Progress.

The steroids they give me to prevent an adverse reaction to one of my chemo cocktails gives me so much energy that I finally know what it feels like to be Type A+++.  I don't know if I should be jealous or offer condolences.

It's 11:30pm and I'm nowhere near sleep.

I lie in bed and stare at the ceiling, listening to the petulant little five year old who stomps up and down the hallways of my brain braying thoughts like a deranged donkey.  She won't leave me alone. Writing sometimes quiets her, so I'm giving it a try.

Today was a double-whammy day; both chemo and radiation treatments mean a full day at the hospital.   I had blood work, a consult with the chemo nurse, radiation treatment, then back up to the oncology department for the chemo administration, which takes about three to three and a half hours.

Long days like this mean that our fabulous new sitter, I'll call her Laura, will be stepping in to be me for the day.   She will meet Finn off the bus, be there when Greta gets home from a play date, help with homework, take Finn  to karate, feed snacks and start dinner.  She is a true God-send, more than capable, and the kids (and Steve and I) adore her.  It will be a dark day in this household when she goes back to college later this month.

As I'm snapped into the immobilization mask, preparing for my 7th radiation treatment, I glance at the clock, and realize they are probably getting Finn into his karate uniform and getting ready to head off to class.  I lie there, pinned to the table like a science experiment, and let little sad waves flow over me.

Treatment is forcing me to let go in so many ways.  Sometimes I go gracefully.  Other times, not so much.

Did Greta have fun at her play date today? Did she start her homework?  How was the first day back from vacation?   My minds spins as the radiation beams hum and hiss in my ear. I treasure the first moments home; that's when I get most of my tidbits of information.  By the time I drag myself in the door at close to 8pm I barely have time for a hello before it's their bedtime.

They are totally okay; Laura is cool and fun, but firmly in charge. I can tell they get a rush being with her. I'm  happy for them - for us -  but my heart still breaks a little.

Damn cancer.

Bedtime arrives, at least on paper - I'm not tired at all - but I dutifully climb into bed and wait for sleep.  My legs feel jangly, odd.  My thoughts refuse to stay in the moment, pinging far ahead into scary, unchartered waters. Then the pendulum swings back to the weekend.  I fought and railed against my dual diseases- alcoholism and cancer - for most of this past weekend.  I was ungainly, volatile, jealous, resentful, victimized.  I was angry.  You'd never know it to look at me in public, but behind closed doors I was not a pretty sight.

I'm terrible at falling apart, because I let it go too long before I realize I'm over the edge.  Then it's all snotty-cries and bubbling resentment and self-pity.

Eventually, I beat myself up enough and ask for help. But not before paying a price with my sanity, with the balance in my family, with a little piece of my soul.  I'm like an ogre, and I know it, and I can't get out of my own way.

I finally, stubbornly, reluctantly and with more than a little shame, reached out and got the help I needed.  I went to a meeting, and spent a lot of time on my knees in my room surrendering over and over and over.

Today, the clouds parted a bit.  Today I feel emotionally shaky, but in touch with what's really going on inside me.  Today the gratitude is back, weakly waving her hand and whispering, "remember me?"

I have to remember, though, this is just today. Twenty-four hours.  Tomorrow I have to get up and do it again - surrender, ask for help, touch the truth, give the ogre - I dunno - a hug?  A primal scream?  I don't think she's going away anywhere soon, and I have a lot of work to do.

It's hard for me to write here about the ugliness. Not because I want to appear perfect - not even close. It's because the ugliness scares me so much I don't really even have access to it.  I prefer to live in gratitude, serenity and peace. It's so much nicer there.  But the ugliness is there, simmering beneath the surface, and if I don't respect it, talk about it - even acknowledge it - it corrodes my spirit, my sanity and my sobriety.

The ugliness makes me feel very, very vulnerable. And vulnerable is hard.


  1. thank you for talking about the ogre, and about not being able to get out of your own way, and for reaching out. and for sharing your inner monologue about lying on the table during treatment. so grateful to have these intimate details in the midst of what you're experiencing. I think of you often, and send prayers for strength. *HUG*

  2. Ellie, Ellie. Your words heal you. Keep them coming. Thank you for writing it all down. XO

  3. Vulnerable is hard. So, so very hard.

    But your truth? Is beautiful.

    {Yes, it is. Transparent, revealing, and beautiful.}

    Still sending you what I've got.


  4. There is nothing wrong with talking about the ugliness or to be gained by denying the ogre is there. The ogre, like the angel, is there for a reason and by letting them have a little bit of room to work it really does help to keep us sane - especially with all that you are going through.

    It is unfair to deal with so much and miss so much as a result. However, the long term view and what that doctor said to you at the beginning is the life jacket you wear - "you are going to go through hell, but you are going to beat this."

    Looking for a way to let the ogre stretch his arms, let out a scream and cry a bit - that is always a good thing. Often when you can do that the opportunity for gratitude to step back up and grab your hand quickly follows in its wake.

    Simply said, "acknowledge its there, let it out, let it go and then count the blessings that remain."

    THinking of and praying for you,

    Take Care,

    {Noel Ratch}

  5. Oh Good golly Ellie. I don't know what to tell you. Except that I liked your post about 5am thoughts. But 5 am thoughts are okay - I can deal with them....I just get up and start my day early. It's the 2 am thoughts that make me feel like I am on the edge of nerves and crumbling. I'm AAAAAA+ - it is no fun. And my advice to you when you are climbing the walls at that hour in the night is to GET UP, read a book, watch tv or something because all you are going to do is spin yourself in to a knot.

    Hugs and love and healing thoughts your way.

  6. Thank you for posting, Ellie. I've been thinking about you and your treatments.
    Sending positive energy your way!

  7. Vulnerable is indeed very hard. Reading your post brings me right back to those all night mind ordeals... thinking I should be exhausted, knowing I am exhausted, but nonetheless nowhere no way was I getting any sleep. My two bedtime companions were anxiety and fear, with frequent visits from pain and nausea. It all sucks... but try to keep reminding yourself that this is a temporary, not permanent state. It gets worse for awhile, but then, it keeps getting better. That's the right order! Someone told me... when you are going through hell, keep walking! It wasn't like a stroll through hell, it was like a roller coaster ride through hell. A little relief now and then, and then it gets wild and crazy. I remember lying in bed and the only way I got through some of those nights was thinking about how to write about what was happening to me in the blog. I think you are very courageous to write from the heart, and writing this out will help more than you realize. The love and prayers and comments will help keep you going! If you have to be vulnerable (and what choice is there, really), then you might as well be vulnerable when you are surrounded by love! And you obviously are. Your family, your friends, your cyber-friends, and your God... all with you!

  8. I know what you say about the ugliness being hard to write about because it's so scary, about letting to go too long. More than I hate the ogre, I hate the damage it does.

    Vulnerable IS hard as hell.

    I hope writing helped.

  9. Yes. Being vulnerable is so f-ing hard. And it would seem that you had already done quite a bit of that, and you did it beautifully. Only time will tell, Ellie, why you need to do this, too. And once again, you are doing it publicly, exquisitely and in a way that is so very real.

    So thank you. Again and always, for just being you and letting us go along for the ride.

    Holding space -constantly- for peace and ease and all the courage you need, every day.

  10. Ellie, I have been absent from the BFB board for quite some time, but I read this post and the one before just the other day. I just wanted to let you know that even though we're relative strangers in life, I am keeping you close in my thoughts and meditations. You speak such beautiful truth and I see myself in so much of what you write, so keep up your healing talent of putting words into the universe. I have an ogre too.

  11. Thank you for sharing it all with us Ellie. You are always in my thoughts, even when you are not posting. Huge hugs, Sister.


  12. Such wise words here. I hope you feel uplifted knowing that so many are thinking of you.
    Easier said than done, but try not to beat yourself up. You're human and no one expects you to be serene and peaceful all of the time.

    Gentle, warm thoughts headed your way...

  13. I recommend making friends with the ogre, maybe get her some ice cream. We've all seen Shrek, you could name her Fiona. Okay that sounds a little crazy but I have a friend that uses that in her recovery, she named that part of her that still wants to drink every day Bertha and even her family knew "oh, that's just Bertha talking, mom'll be back soon".

    Be gentle with yourself, and remember that this too will pass, it just sucks sometimes.

    Head up, shoulders back, deep breath and onward!

    Michelle (@mjbutah)

  14. Anger is a normal part of the grieving process. Experience it, and it will eventually pass.
    I usually prefer to leapfrog from denial (one of my favorite places to be!) directly to acceptance. Impossible! In between are the messy countries of anger, bargaining and sadness. I often say that acceptance is just another word for exhaustion. I finally get tired of my own whining and get to acceptance. It can't be forced.
    You are doing so well! I love your writing about this journey. You probably don't want to hear it, but you are a power of example to me and to so many others.
    Prayers and love to you.
    Cathy Corcoran

  15. Thank you for writing. Whether it's ugly or not, I love to "hear" your voice here. Otherwise I worry. Hold on, be-it an ugly moment or a grateful one - just hold on, hang in there. Lots of love.

  16. Ellie, you are a blessing to all of us! I'm on the other side of that radiation mask, as my daughter had that...the steroids, they take on a life of their own, a love/hate relationship, and they become your other partner. I'm an alcoholic, who was blessed to read Redbook, and find you!! I'm angry,bitter,heartbroken, as my husband left me because of my alcoholism two months ago. I pray that you find your way to heal and that I find mine. I believe we are two very strong individuals that can take this, and over come it. I look forward to your posts, and God bless you in this journey, which so many are sharing with you :)
    LuAnn Hultgren

  17. I just had this crazy thought..

    What if your ogre is like Shrek? Let's say Fiona? Everyone who's unfamiliar is terrible, but once they let her in they adore her.

    I have this strange feeling that inviting your ogre in--truly and finally--is going to unlock magnificence.

  18. Yes, one day at a time, one hour, one minute ...

    And some days, yeah, the stomping, braying five-year-old will show up. I don't blame her. She's scared. Treat her like you'd treat any scared child. She's no ogre. She's just a kid. All this shit that you are going through, she has to go through, too. It is so damned unfair. But she'll be OK ... and so will you.

    Hang in there, Ellie.

  19. Gee, Ellie, to my way of thinking you sound pretty normal! I know what you are going through and it isn't fun, but you seem to be handling it with grace that is most becoming.

    I suspect the two worst parts are not having the time with the kids, and not being able to sleep at night. Don't know why not sleeping is so fearful for me, but it is. I am learning to just go get on the computer and read some blogs, or the comics, or even the news, and when I get sleepy go back to bed.

    I also know the ogre only too well. I also know that he doesn't want to hurt me or make me afraid of him, which I am, but that is just his nature, nothing either of us can do about it. Once I recognized this the nightmares quit, and while we are not friends, neither are we any longer enemies. Perhaps at times we even work together to accomplish something.

    Thinking of you often,


    Mike L

  20. Ellie, I am so amazed and inspired by your ability to write how you are feeling and, yes, to let yourself Be so very, very vulnerable. You are cutting a path for so many of us who will follow in your footsteps someday. I hate that you are one of the people who will do it, but you have taken it on with great courage. Your generosity in sharing your experience is astonishing. I love you.

  21. All I can say is what my counselor told me when I went to see him "to help my husband" and found out it was really "to help me." When I had poured out my story he just looked at me and said, "Judy, what you are feeling is perfectly normal for everything you've been through."

    Ellie, what you are feeling is perfectly normal for everything you are going through. Or, more succinctly put, "It is what it is." And I'm one of those who thinks that for your honest and open reaction to it being what it is, and for your willingness to share that with us, you are way-freaking-awesome.

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