Friday, April 25, 2008


The dark, mournful figure of Grief has been elbowed to the side of the stage today by stark Fear, who clutches at me with chilly, grey fingers. Or maybe it's the cold rain outside. Today, it's not the sorrow at the thought of dying and leaving my family to cope without me that washes over me; it's the terrifying idea of how much pain and destruction my body is in for as I embark on this course of radiation and chemotherapy. It's the idea of laying waste to my body with drugs that sound like weed killers. Drugs that will give me nausea and mouth sores. Drugs that will rob me of my energy and my white blood cells and my hair.

I dreamed last night that I started chemo without knowing anything about my treatment plan. I just swallowed a couple of big, white pills in the doctor's office and waited to see what would happen. I kept asking for the plan, and a nurse finally handed me a piece of legal pad paper with a hand-written schedule on it. I found out I'd be taking a very toxic double-drug combination every day ... until November. Six months! I freaked out. It turned out the pills were just the less-toxic half of the combo, and I asked if I could just do that one and not the other. In fact, I think I demanded it. I woke up feeling desolate and afraid.

I wore a new, green, cashmere sweater to my appointment with Dr. S. this morning. Somehow, I feel I should be wearing bright, life-filled colors right now, not black. Maybe the rainy day influenced that choice, too. It looks like I'm going to have two weeks of moderate-level radiation on my hip to alleviate some of the pain before starting chemo. So at least I have a little more time to prepare myself emotionally and mentally (if not physically) for what's ahead. Dr. S. said that he would recommend starting me on a combination of Doxil and Ifosfamide, which, indeed, is a fairly toxic combination. Thinking about it makes me want to throw up. It sounds like I could probably just start with Doxil, too (like in my dream); we'll probably discuss it further as we go along.

On the plus side, Dr. S. signed off on the form for me to get a handicapped parking sticker. So at least I've got that going for me. (Well, that, and tons of people who are coming forward, so generously, to help us.)


Anonymous said...

I am so sorry you are going through this. My heart breaks thinking of you and your family, because this should be the happiest time of your life. I will be sending positive vibes, prayers and thoughts your way, hoping that you recieve the outcome your family deserves. A wonderful healing miracle that keeps you with your husband and boys for many years to come. Please take care of yourself.


Diva Mom Vicki said...

Please know that you and your family will be in our prayers!

Ellen said...

Your new sweater sounds really nice. You will find you are stronger than you realize.

Aunt Becky said...

Oh darlin', I can only imagine what you're going through.

You should know that a complete stranger is holding you in her heart and sending healing vibes your way.

Lots of love today and everyday.

Anonymous said...

Words simply fail me every time I try to comment. I click on the link to leave one, then spend so much time backspacing. I hate to say something cliche or inadvertently insensitive. Just know that I am praying for you way down in Texas. Hugs to you.

Coach Megan Thomas said...

"And I know I am solid and sound,
To me the converging objects of the universe perpetually flow,
All are written to me, and I must get what the writing means."

-- Walt Whitman

LutherLiz said...

I'm glad there is some prep time for the chemo to wrap your mind around it all. Much love to you guys and you know you can always call!

susanalexandermyers said...


I'm thinking of you tonight and wishing for you great strength, faith and peace along your journey. Your boys are just beautiful - what a blessing!

Cousin Susan

elizabeth in mississippi said...

Emi, I was trying to think of something to type to make you feel better...

The way you described Fear as a living, breathing being (with gross grey fingers) kinda creeped me out, but then I thought, "who could fight the monster Fear?"

You will laugh at who popped in my head.

The cartoon boy from School House Rocks! "Knowledge is Power!"

I don't know what's weirder, me thinking a cheezy 70s cartoon could be your superhero, or the fact that I truely believe that Knowledge really is Power for you.

The NOT knowing is giving you the nightmares. Once the doctors & you get the plan in place & you feel comfortable that the decisions are right for you and your body, then hopefully you can FACE FEAR with your brain & wipe him out.

Anyway, you know what I mean even if nobody else understands these little ideas that pop into my crazy grey matter.

Love you, & you know I mean it.

Elizabeth in Mississippi
(can't wait to see more smiling faces posted in the blog!)

Jamie said...

I can't remember who wrote it, but 'Fear is the mind-killer'. It's such a natural response, but your mental image of it as a Dementor is perfect. I wonder if that's what JK Rolling had in mind when she came up with them? Anyway - I think your new sweater sounds wonderful, and I do agree that bright cheery colors help. So does the sun, but that's for another day :)

I'm glad that they are starting you with something that will give you pain relief - that should make the mental and physical preparation less daunting. And won't it be fun to have a more smily face as your "pain number" next time you go in to the dr?

We're thinking of you!

Jamie (& Mike too)

Alex & Jill said...

Looking at your hair color, I bet the green sweater looked gorgeous!

You're at the top of my prayer list... *hugs*

"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind" 2 Timothy 1:7.

Madwoman of Preserve Path said...

G'mornin', Emilie! You amaze me. I'd be paralyzed with this headache load of information, and you're throwing around explanations like you're the M.D. I know you've been around this block before, and you've probably done enough reading about it to be a specialist yourself, but holy info, Wonderwoman! It does help, doesn't it, to dissect "the known"? I've always been fearful of not knowing things, too, whether it's driving in an unfamiliar neighborhood or embarrassing myself at a cocktail party when I couldn't remember who the bad guys were - the Tutsis or the Hutus. Maybe the more you know about all of this, the less your fear will start with a capital F.

Prayers from this blogsister ...

Ordinary Mom said...

I don't know you personally but came across your blog while I was visiting another blog...anyway I am praying for you!! You and your family will be in our daily prayers!!

Anonymous said...

Emilie and all,

I followed a link for a Team Sarcoma event that Mary (ABC Survivors) included in a recent comment, and found a sarcoma fundraising event that will take place in St. Paul in July. Here is a web address for those who are in the area, and are interested in attending:


Anonymous said...

Hi Emilie,
I remember you from one of the ttc boards. I am Shanie (ChlobelleTwo). Someone on another board posted your blog and I've been reading it with tears streaming down my face. My heart goes out to you and your two beautiful boys. I will hard and every day for you...I will pray that God works one of his miracles and the doctors are wrong. Sending you lots of hugs....

Anonymous said...

....that should say I will "pray" hard.....

Chris said...

HI Emilie,
I "know" you from the old TTC board. It's Chris (1219bride). I just wanted you to know you have a whole bunch of people praying for you and thinking of you every day. We are all wishing we could do so much to help you out right now.
We are sending you lots of positive thoughts and huge ((HUGS)). Please take good care. I wish I could say and do more.

Elena said...

I had to laugh when I saw Jamie's comment. That quote has been one of my mantras for years. It's from Frank Herbert's Dune: "I must not fear. Fear is the mind-killer. Fear is the little-death that brings total oblivion. I will face my fear. I will let it pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has been there will be nothing. Only I will remain."

I've always interpreted this to mean not that one should suppress one's natural fear, but rather that one should acknowledge that fear is a powerful and potentially disabling force, allow oneself to feel it fully, and then let it go so one can see a situation with full clarity and presence of mind.

Your grace, humor and bravery are inspiring, darling Em.

Anonymous said...

I loved the "Dune" realization that the sand is the worm and the worm is the sand. Can that apply here somehow, too? The cancer is the fear, and the fear is the cancer, and if you can eliminate the fear you could eliminate the cancer? I'd love that for you.

-Laura S.

Anonymous said...

Hi Emilie,
this is Gloria (Ivygalore2002) from the TTC MSN board. I am so sorry that you are going through this. I have been checking your blog for updates since last week (when someone posted it on our board). I am praying for you and your family. You have already endured and overcome so much!!
God Bless you!

Piccinigirl said...

You are never far from my thoughts and so as you prepare to go through this, get going on getting better, I am here.
You are stronger than you know and being afraid doesn't diminish that, it just reinforces it.

Ahuva Batya said...

I found myself driving along this weekend and suddenly gripped with fear... for you, for how scared you must be. I wish I could take it all away.

Kerry said...

I just don't have the words to express the range of emotions I am feeling for you, Steve, Daniel, and Ben. Most of all I guess I would like to express love for all of you. Please know we are thinking and praying for you every day.