Tuesday, August 12, 2008

changing course

The results of yesterday's CT scan weren't very good. More tumors (two in particular) are growing in my lungs. Miniscule or undetectable on my scan two months ago, they've grown to at least a centimeter or more in diameter. Like last time, the chemo was able to halt (or slow) the growth of the larger tumors, but it hasn't stopped these new ones, which means they must be resistant to this particular form of chemo. So the doctor isn't going to have me continue the chemo I've been on. Instead, I'll start another combo next week. (Edited to add: The new drugs are Gemzar and Taxotere.) Whether the new chemo will stop the new tumors or even the old ones is anyone's guess.

The thing is, it's all a guessing game from here on in, like shooting in the dark. This type of cancer is so rare that there isn't really a standard course of treatment that's known to work. The chemo drug combo I was on this summer is typically the one the doctor tries first, but if that doesn't work, he'll just try a couple of other combos and see if they work. The chances for success aren't as high, but Dr. S. said you never know when something might work. He agreed with us that this is probably the time when getting a second opinion would be a good idea, at least so we feel like we've explored our options. I'm going to call the Mayo Clinic and see if we can get an appointment there. That's as far as I'm allowing myself to think right now. I can't think about going to Houston or Boston or the other sarcoma centers yet. I wish I had the power and clout and money that Edward Kennedy did to call in all the national experts to my bedside.

I'm feeling pretty dejected about this news. Kind of numb, not really fully processing it, even a day later. The grey rain that's been falling steadily all morning feels like it's falling right into my heart. As soon as I finish posting this, I'm going to go crawl back into bed (with Daniel, who is sleeping there), sip a cup of tea and read my Nora Roberts novel.

74 comments:

darcie said...

oh Emilie - I'm so sorry. You don't know me but I've been lurking around since finding you via Cribsheet. I have no words for you and I won't pretend to - but please know that you are in my thoughts and my prayers. Do snuggle that little man of yours - there is nothing better to soothe your soul than the snuggling of a little one - Take Care Emilie - darcie

Vicki (aka Kodi's mommy) said...

I'm sorry.

G said...

Oh Em, I am so sorry. I am keeping you in my thoughts. I hope this new course works better.

Kristie said...

I'm so sorry Emilie. I was hoping and praying that the news was better.

Aunt Becky said...

Oh, Em. I'm sorry.

Lollipop Goldstein said...

Sweetie, I'm so sorry. I wish it had been better news, more clear-cut news. That there were answers instead of tries. Go curl up and take care of your heart today.

EasyMac said...

Emilie
I am so sorry. You continue to be in my prayers.
Kathy

Katie said...

I'm so sorry, Emelie.

Sue said...

So sorry the CT scan didn't provide better news.

Monica said...

i am so so sorry.

Monkeymama said...

I'm sorry Emilie, I wish there were something I could do more than offering more prayers.

Beth said...

So sorry, Emilie.

Is surgery on your lungs an option? I only ask this cos when I was battling my cancer and developed lung mets, my surgeon removed what they could from my lung, and then continued with the chemo afterwards. I live in S.Africa yet slides of one of my lung mets (one discovered years after my initial disease, burnt out by the chemo) was sent to Mayo Clinic for their opinion.

Thinking of you...

Molly said...

So sorry, Emilie. I'll be thinking of you and your family.

Heather said...

Emilie,
Know that you're in my prayers right now.

It's hard to go wrong with Mayo. However, for what it's worth, the most agressive/cutting edge research guy for sarcoma is affiliated with UCLA and has an outpatient clinic in Santa Monica. He was my first doctor and has taken on cases that others have seemed overwhelmed by. His name is Sant Chawla.

You may also try emailing Gina D'Amato in Atlanta...she's a bit of a whiz in the field as well. I have her contatct information if you'd like.

I related SO much to your dismay at the loss of your lashes and brows...it was such a "last straw" kind of thing for me. I also lost all of my nose hair...and gained a constantly dripping nose during the winter.

Hang in there.

Heather

Not on Fire said...

I am so sorry.

Jill said...

Emilie,
I'm holding you and your family in my thoughts and prayers. Snuggle those babies of yours and the awesome community of friends and family around you will continue to support you in any way you need.

MrsSpock said...

So very sorry. You are in my thoughts. A cup of tea and a good book sounds like a good idea today.

Anonymous said...

Darn, darn, darn. I'm glad your health team is going to quickly change courses and try another angle. Mayo might be able to help, and they may be able to lead you in another good direction, too. As Dad said, "Pick a destination and run fast to it. If when you get there you realize it isn't the right place, run fast to the next one and don't dawdle." Sounds like they and you aren't dawdling. Rest up and fight on, Emilie. We'll all help as best we can.

--Laura S.

Cindy said...

Sending prayers.

Jenn said...

*hugs*

Christina said...

What hard news! I'm so sorry, Em. I admire your tenacity. Contacting Mayo sounds like a great idea.

I bet it's hard to be patient as you await chemo results and devise new plans.

I am optimistic that one of these combos is gonna work very well, and you will find it soon!

Co. said...

I'm so sorry. Cancer sucks. Wishing you all the luck in the world.

liz said...

Oh, crap. I am so sorry.

If you need some help navigating Mayo, I know a couple of people who work there. I wouldn't go so far as to say I have an "in," but I'm guessing they could help me figure out how best to get one's foot in the door. Let me know.

annacyclopedia said...

I'm so sorry the news wasn't better and there isn't a clear path ahead right now. I do keep you in my family in my thoughts and prayers, and I'm wishing you peace and gentlness with yourself as you process this latest stuff.

Madwoman of Preserve Path said...

Damn. Well, what can you do? Sounds like you're doing it. The doctors at Mayo are quite wonderful, and hats off to your doctor for inviting you to get some extra opinions. I know this news is hard to swallow, Emilie, begging for all your patience and resolve. Bon courage, my friend. I'm sending a hug with my prayers.

LutherLiz said...

I'm so sorry. Please let me know if there is anything I can do. I'd gladly drive you to mayo, watch the boys or just go to see a distracting movie with you.

Hopefully the addition of some other doctor minds can find the combo to work for you!

Piccinigirl said...

oh Emilie, my heart is hurting with your heart today. Snuggle Daniel today and take care of yourself, I will be praying.

Anonymous said...

Oh Em, thank you for posting this. I doubt it's easy to get out of a comfy bed to write this, so thank you doing this so we all could be updated.

A cup of tea and a Nora Roberts novel sound good right now. What about sipping some wine? Fuck what anybody says about the effects of alcohol.

battynurse said...

I'm so sorry. You will be in my thoughts and I hope that the next combination works for you.

Nissa said...

*de-lurking* I'm sorry.

Sully said...

I am so sorry to hear this. You and your beautiful family are in my prayers.

Roxy said...

oh Emilie - I am so sorry the news wasn't better. You guys are in our thoughts and prayers.

sharon said...

I'm so sorry Emilie. I will continue to say prayers for you and your family. Take care of yourself and feed your soul on a daily basis.

Sharon (ChiTownie from TTC)

Ahuva Batya said...

Shit. That's all I have to say right now. Love you.

Jen J said...

{{{Emilie!!!}}}

I'm so sorry to pop on today and read this news. You, Steven, Daniel & Ben will be in my thoughts & prayers. Mayo is a wonderful, awesome place and they do have the resources there to consult with the national experts. Enjoy that cup of tea! God Bless!

Mary Z said...

I'm new to your blog, Emilie - but I'm so sorry to hear this latest news.

Re going for a second opinion, my cousin has just finished a course of treatment (started in March) for salivary gland malignancy at MDAnderson in Houston. I was there for the start of it. Everything was done SO well, and everything was done to make him as comfortable as possible. He's finished his chemo and radiation now, and goes back next month for further testing.

Anyway, I would highly recommend them for any treatment. Best wishes for whatever you decide.

Marketing Mama said...

That really sucks. A second opinion sounds like a good next move. Thanks for sharing the update, Emilie.

kristine said...

I'm so sorry Emilie.

Chris said...

I'm so sorry Emilie. I hope you were able to escape for a while with your Snugglebug and good book. My heart is full of prayers for you.

Jennifer V. said...

CANCER SUCKS!


I hope your snuggle with your little guy gave you warmth today. You and your family are ALWAYS on Jaime and my minds. Please be sure to call on Don and Cyndy, they were a great help last summer, while we were at the Mayo.

Anonymous said...

Im not really sure what to say, but I want to say something ... so here goes nothin ...
1. Cancer DOES SUCK
2. Sorry to hear about those new little bastards in there.
3. A second opinion and Mayo both sound like fantastic things to act on.
4. As always - thinking of and praying for you.
5. Nora Roberts is sometimes the best girlfriend you can have at times like this! Enjoy her company, and the little man snuggles! :+)

Hugs and smiles for you!
God Bless!
-Heather H

Soupy said...

I have much more strong words of the cursing brand to say but I'll refrain. No that you're in my prayers (always) and my heart is in little shatters right now for you and all. I'm hoping something sticks it to those nasty tumors.........bah.

GrandmaK said...

I visit via A Catholic Mom in Minnesota. I simply want to say, God bless and keep. Cathy

Heidi said...

Glad you live close enough to Mayo to check it out. Can't get much better than that. Keep fighting, Emilie. You and your family are in my thoughts and prayers.

Wish I had some good news but we got our own version today, too. More problems with our adoption. Will I ever be a mom?

Tracy said...

I just don't know the right words.. I'm so sorry.. know that you are in my prayers and so many others as well.. ((Hugs))

Cibele said...

I ma so sorry.

Skerry said...

Another lurker coming out of hiding to let you know you and your family are in my thoughts and prayers. I have been reading daily for a while now and have enjoyed your posts, the sweet ones about your children (they are beautiful) and the sad ones about your battle with cancer. Take care.

MIP said...

All my good thoughts and hopes headed your way.

tonya said...

I hope you find a combo that works to fight the tumors quickly, You are in my thoughts.

Agape said...

I am so sorry.. I don't know you but I have appreciated your blog and am very sorry to see you going through this. I am a cancer survivor- 15 year now and 4 kids later.

I hope you will take a day to cry and curl up and just be still with your beautiful children and then find the strength to get on the phone and find the best doctors and cancer centers out there. You have to fight this for your children. It isn't over. You are amazing! Just last week you were painting your bathroom!! Most healthy people don't do that!

May God give you the strength to carry on and the patience to find the doctor that has some answers for you.

I am praying for you and your precious family. Please don't delay run don't walk to the best sarcoma center out there.

May Christ guide you and give you comfort and strength!

Geohde said...

Reading for the first time.

I am so very sorry.

xx

J

Jamie said...

Emilie, I'm sorry. I hope they can get you into the Mayo quickly so you can begin to explore all of your options. Please know that you continue to be in our thoughts and prayers.

Jessica Griffith said...

I wish the news were better. Prayers with you as you explore the options at Mayo.

Jessica

Anna's Mommy said...

I'm so sorry, to say this sucks is an understatement. I'm glad Mayo is not far away.

Anonymous said...

Emile, like Darcie, I have been lurking around for some time. Seems to me that you have rec'd all the "I'm so sorry's" that you can stand, so I will just say that you draw me back time and again to your blog with your writing style and I find myself wondering how you are doing so I have to come back. I keep praying for the best that God can provide for you and you are constantly in my thoughts. Looks like you are blessed with a wonderful family and now the only thing left is to get you cured. Good luck and may God bless you.

Anonymous said...

Emile, like Darcie, I have been lurking around for some time. Seems to me that you have rec'd all the "I'm so sorry's" that you can stand, so I will just say that you draw me back time and again to your blog with your writing style and I find myself wondering how you are doing so I have to come back. I keep praying for the best that God can provide for you and you are constantly in my thoughts. Looks like you are blessed with a wonderful family and now the only thing left is to get you cured. Good luck and may God bless you.

anne said...

I have been reading your blog for a while now, checking in hoping for good news for you and your family. As I read, while my little man takes his afternoon nap, tears come to my eyes for you and your family. I am so sorry.

Journeywoman said...

I have no words.

I'm thinking good and peaceful thoughts for you.

Ellen said...

Oh Em, I am so sorry. I'm glad you're getting a second opinion. There are options out there for you!! Is there a way to stop chemo until you get your second opinion? Your mind must be in a fog. Go enjoy the novel!

dana said...

I am so sorry, Emilie.

I have no words...but want you to know that you and yours are in my prayers.

Not Strictly Spiritual said...

I checked in with your blog today hoping to hear that you received good news. I'm so sorry. I will keep praying for your and your family.
Peace,
Mary

JustKrisAgain said...

Hi Emilie--

I read your blog often and we have your name on our 'sticky note' prayer fridge. Just wanted you to know that you have many out there praying for you and your family. I read your articles in the Catholic Spirit and love your perspective. You write so well and from the heart. I hope the prayers lift you and your family up and bring you strength on this journey.

Anonymous said...

You and your beautiful family are in my thoughts and prayers. Just another lurker-delurking.
Kasie

brian said...

oh God, this was the post I didn't want you to have to post. I so want to believe that our good thoughts help you. I just want to help you, and I don't know how. I don't even know you, but I feel I do.

Amy said...

Emilie - I'll ditto what most have said already. You were in my thoughts yesterday and today as I was looking out on Lake Superior. I know how much you love it up north. Your blog was the first thing I checked after walking in the door.

I can't come up with anything original that will provide you comfort, ease your worried mind and take away the disappointment, except I'm sorry.

I'll change my prayers tonight that this next course of treatment and a second opinion will provide you with some peace of mind.

Damn it. This is so challenging from a faith perspective.

Amy

Rebecca said...

So sorry, Emilie.

V's Momma said...

emilie-
I'm sorry to hear this. you have been in my thoughts so much, and I am still praying for you.
your attitude, outlook and amazing spirit will guide you through this.

I wish there was something more I could say.

if there is anything at all ... just ask.
amy

Anonymous said...

I am so sorry to hear this news. I will continue to keep you and your family in my thoughts and prayers!

If you do decide to go to Boston for treatment, we have a lake house in NH (30 min +/- outside of Boston) and you could stay there.

You are such a strong woman. So brave! You amaze me!

-Amy
ames143@hotmail.com

Anonymous said...

So sad when I read the updated blog. These were not the words I wanted to see. You inspire me to live my life fuller, hug my family closer. Praying for you, your husband, and those wonderful boys.

Stephanie

Joy from Plymouth said...

Hello Dear, Like everyone else, I am saddened to here the news on your cancer struggle. You are in my thoughts and prayers. Say, have you ever read any of LaVyrle Spencer's books? A most talented Minnesota author. Oh, they are so good, you will love them.

Roxane B. Salonen said...

Emilie,

Thanks for continuing to share your life and thoughts with us. You are giving so much through keeping connected with us out here. God is right with you, in the touches of your sweet little boys and husband.

E-hugs from North Dakota from a fellow writer and sister in Christ,

Roxane

Jo on the go said...

Sometimes it seems like dealing with something so unknown and scary is like throwing darts in the dark without any idea how far away the target is. I hope that miraculously one of the darts hits the bullseye soon and eradicates this beast that's taken up residence.
Huge hugs.

Betty M said...

Veryy sorry to see this update. I hope the 2nd opinion gets some new ideas. Often they just don't know what will work for whom so always worth trying different combos. Hoping they will find the right thing for you soon.

Queenie. . . said...

I'm sorry the news wasn't better, but keep your chin up. They never know what is going to work with any given person, and the next treatment may be just the thing for you.