Tuesday, May 20, 2008

frustration

Setbacks, communication breakdowns, tears, frustration with the oncology nurses, anger eating at me as I fall asleep. "That's what the doctor wants." "Are you telling me I don't have a choice?" "That's what the doctor said he wants." "Well, can I speak to the doctor, then?" I'm not going to go into detail about the crap that's transpired in the past 24 hours. The end result is that instead of having a Power Port in my chest, I now have a PICC line hanging out of my arm — a 43-centimeter catheter threaded through a vein and running to a larger vein near my heart. I'll wear it for the week that I have chemo, and then they'll get the port in me for the next cycle. The nurse who put my PICC line in this morning, a motherly woman named Sally, wasn't above giving me big hugs, and that helped a lot. And they put Pride and Prejudice (the Kiera Knightley version) on a portable DVD player for me to watch during the 15 minutes it took to put it in. It hurt less than I thought it would.

What else? Chemo starts tomorrow. I got an answer to my night sweat question: Don't sleep next to my children, and wash the sheets every day. So that's one more thing to add to the long to-do list of chemo care. I'm totally overwhelmed. I'm still reading up on nutrition. My friend Shannon gave me a copy of Entertainment Weekly devoted to the new Sex and the City movie; reading it last night in the tub made me forget, for a few minutes, that I have cancer.

20 comments:

Anonymous said...

Grrrrrr. But now you're going to start the treatment, and I suppose that's what matters. Grrrrrrrrrrr.

--Laura S.

Anonymous said...

Kiera Knightley played in a version of P & P? (I should know these things.) She's so beautiful.

But not as beautiful as you'll look even without hair. I'm praying (so are people at my church, and Chelsea at work), crying over the general overwhelmingness of it all, and will be thinking of you completely tomorrow.

Sorry you have to (temporarily) have that hideous tube deal.

- Susanne

- Susanne

Monkeymama said...

I'm sorry that non drug related things are adding stress to this process. I knew very little about chemo before you started blogging about it. I didn't realize that it would impact your home life so much.

Can you guys can have a live-in helper for the treatment weeks. Someone to help with the manual labor.

Anonymous said...

How frustrating! I truly believe that compassion should be a job requirement for all oncology staff (at least those who see patients). I hope and pray that you run into many more Sallys as you go through your treatment.

Lollipop Goldstein said...

Sending so many good thoughts for tomorrow.

Anonymous said...

So seriously. I dont know you, and I say that everytime I post, but I think you are amazing. Chemo sounds like it sucks big time, but I think all of your fears, worries and wonders are completely normal. Like Laura S. said - the treatment is starting and that's what is important! Keep mental images of the your little guys smiles and they will warm you and get you through the toughest of times! Thoughts and prayers, hugs and squeezes to you!
Heather H

Amy said...

Emilie - I'm sorry that you have to go through this extra b.s. It's certainly not needed at this point - you've already been through enough.

I'll continue the prayers for you from across the pond first thing in the morning - I'll have 7 hours on you.

Thoughts of peace to you. Good luck with everything.

Amy Mimick
Orleans, France

Sully said...

best of luck tomorrow!

Heather said...

I sort of stumbled onto your blog "accidentally" but wanted to let you know that you have another heart praying for you. I am a former ECFE Mom as well. (We just moved to Kansas.) I think we have boys about the same age to we may know some of the same people. My oldest boy is 2 years and 4 months. Anyway, I am sending you all kinds of healing energy and strength. Blessings for happy, healthy cells.

maresi said...

ugh, it seems like every time you find something to encourage you (your list of why chemo is your friend), something happens to bring it back to the crushing reality. I'm sure also you'd like the feeling of SOMETHING just being the way you thought it would be in this new reality of yours, like the Powerport being installed the way you thought it would. I can understand why you are frustrated.
I only know you through this blog and yet I wish I lived nearby - I truly enjoy washing and folding sheets and making the bed with fresh ones. I wish I could do that for you.

battynurse said...

I'm sorry that all of this is not going the way you thought it would be or wanted it to be and I can imagine it is very stressful. Sending many healing thoughts and hopefully some peace your way.

Tea with Tiffany said...

I am sad to know the battle continues.

I pray others come alongside you and help you do things like wash sheets. I am sorry.

Kristie said...

I'm so sorry Emilie.

Christina said...

This must be hard enough without unexpected setbacks! I'm SO sorry to hear you've endured so much frustration in these hours before chemo begins.

I admire how you're focusing on the bright moments, like hugs from Sally. Here's sending healing thoughts and fervent prayers as the chemo begins. DIE, CANCER! DIE!

kristine said...

I'm sorry Emilie. Again, wish I knew what to say.

Anonymous said...

Oh goodness! A PIC line. Hmmmphh! That just sucks.

I am more than happy to wash the sheets and be your cinderella for the week. You can be Anastasia or Drezella (sp?) You can boss me around. I can hear it now...JenniFFERRR...CLEAN MY ..... !

Oh Emilie-
You can do it. Think little engine... I can do it, I can do it...

Go ahead and piss and moan about it whilst you DO IT.

Hugs-
Jennifer V.

Marketing Mama said...

Oh Em, that totally sucks. Good luck tomorrow, I'll be thinking of you.

Heather said...

I'm glad your doctor lets you do your protocol outpatient. I had to be inpatient each time, which meant time away from the kids. I'm sorry about the line...that kinda sucks, but maybe this port will have a little time to heal before they have to access it. Accessing a fresh port can really smart.

Hang in there as you start chemo today...and take some hard candies or mints. The ifext can cause a weird taste in your mouth amost right away.

Kir said...

sending every good thought, every ounce of love to you as you start chemo.

*I'm also not above sending virtual hugs to you...HUG*

Unknown said...

Emilie - we are sending all of you hugs too! we love you!