I am getting ready to get my stuff together so I can finally move out of this room. I'm not going home yet, though. I'm moving to the oncology floor from the lung and cardiac floor, where I've been all week. As soon as I'm settled in, they're going to start a round of chemo.
Steve came over this morning, and we met with the doctors, and yes, I have more tumors. In my lungs and outside on the chest wall where the fluid was. One of them is bumping against the cavity that holds my liver. Ugh, ugh, ugh. This chemo is a new combination of drugs. I don't know how it will be compared to past ones, but I think I can say goodbye to my newly grown hair.
I cried. It's been an emotional morning. I don't know how to cope, so I either try not to think too hard about it, or I cry. I cried when I got into the shower to shave my legs for the first time this week and sprayed water all over myself. (Plus, it's just humiliating to sit in a shower all naked and stinky and have someone help you bathe.) I don't think the aide helping me understood. "It's OK ... we'll get you all wiped off." I finally blurted out the stuff about the cancer, and then she backed off, and I thought she was going to cry, too. And we got my legs shaved.
On the plus side, I got the chest tube out, which makes me feel 80 percent back to normal as far as breathing goes. I still cough a little and have some sore spots in my back, but I can get in and out of bed easily.
And Kiersten, our summer nanny who is now in medical school here at the University of Minnesota popped over after her class with cookies. We chatted for a while, and that felt nice.
I finished Twilight and have started the second book in the series, New Moon. Quick reading and fun for a long hospital stay!
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41 comments:
I don't know what to say, I'm so sorry you are dealing with all of this and you are in my prayers all the time.
Emilie,
No one knows how to cope in this situation. I'm so sorry that everything seems to overwhelming now. I don't know what to say except that I continue to pray for you and think healing thoughts.
http://www.debbiefriedman.com/ I hope you find some comfort in the words and melody of the Mi Shebarach, the prayer for those in need of God's healing.
Although you don't know me I'm praying for you. I've been following your blog and keeping you in my prayers for a while. I just wanted to let you know.
I'm sorry.
Emilie - there are no words to say how sorry I am that you are dealing wit all of this. Cry all you need and want to. I think everyone here is crying with you. We are also praying for you - for strength and healing. We love you Em.
I don't normally swear, but I think I can speak for everyone when I scream one big collective "FUCK"!!!!!!
You do not need nor deserve this. I am so damn sad and angry that you are having to deal with all of this. It is not fair. Not fair. I try to believe that there's a reason for everything but I just don't understand this.
I'm so sorry for all of your pain, your suffering, your struggling and your anguish, Emilie. I truly am.
You and your family remain at the top of my prayer list. Is there anything I can do for your Oregon fam? Anything at all???
Emilie,
I sit here crying as I read this post...I know that there is nothing I can say that will make it better. I'm so sorry. I'm praying for God's healing on your body. I've read your blog for quite some time and I find you to be so strong. I know you probably don't feel strong a lot of the time, but you're a fighter and I love that about you. Don't give up.
Covering you in prayer...
Shit.
I am so sorry about everything that has happened this week. You must feel totally overwhelmed! Cry all you need to, honey. I'm crying too.
{{HUGS}}
I'm so sorry.
Emilie, the one and only comfort I can offer is that the cancer floor is a remarkably nice floor, much more so than the cardiac.
I have stayed on both floors at St. Vincent, at different times. The cancer floor is remarkably peaceful, quite, laid back, friendly nurses, etc. I remember, at the time, being quite impressed with it.
When I read this post, I started crying. My co-workers came in to offer comfort.
I'm so sorry your news wasn't better today, Emilie. I hope this next round of chemo works soon. We're thinking of, and praying for, you. Lots of love ...
I'm so sorry Emilie. I was really hoping that there would be no new tumors. Fucking cancer. I'm praying for you.
Emilie,
I'm so sorry. Please know that you and Steve are in our prayers every day.
Emilie, I'm really glad you have some answers now and can get an action plan for attacking. I suspect the oncology floor is nicer. If my sister-in-law is ever there I'll ask her to drop in.
We're still fighting colds so I can't visit in person. My spirit has been there frequently, though-- please imagine goofy, irreverent, french-accented words for all sorts of things in your room, your nurses, and your lehg-shavING assistahnts.
--Laura S.
I think Moosh said it the best. I am just so heartbroken that you have to face all of this, Emilie. I wish I were closer and could do something concrete to help. You are constantly in my prayers...
What a crappy week Emilie. And just when you're about to become a new fan of the big phenomenon - Twilight! Those nurses don't know anything about what you've been through. Keep coming back to your blog because we know what's up!
I wish I could say something helpful...
Not that this is helpful, but Twilight is absolutely the best of the series. Although I've heard good things about the 4th, you mostly have to slog through 2 and 3.
Oh Emilie, I'm so sorry you've got this incredibly painful and difficult path. You are in my thoughts and prayers.
there are no words... I am sorry Emilie....it isn't over yet , you have two lovely boys and a dear husband you love as do countless other people. I am praying for you and thinking of you. Don't give up. God Bless you and help you through everything
Emilie,
I am a long time lurker and a first time poster. I just wanted to say that you are in my prayers each and every day. I will think healing thoughts for you.
Dayna
Gah, Emilie. I'm so sorry that you didn't get better news today. Still keeping you and your family in my prayers.
I am so sorry, Emilie. I cried when I read your post. Even though we have never met, I think you are an incredibly brave and strong woman. You and your family are in my thoughts and prayers.
- Lynn in New Hampshire
I found your blog when I was searching for retroperitoneal sarcoma. My 47 year old husband was just diagnosed at the end of August. I am praying for you and your family and am sorry for all you are going through.
Oh man. Emilie, you're being covered with prayers right now and I can hope that's some sort of comfort during all this. It's just all so wrong.
Hi Emilie we are praying that your new chemo will help. I know Linda can empathize with your catheter (she has a port) difficulties - I'm not sure why people don't get that sometimes even supposedly "little things" (such as being attentive to a catheter or port) can help. Thanks for your updates,
Rob and Linda B.
you are in my contant thoughts and prayers. my heart aches for you, steve and the boys.
jill
Oh, Emilie. I'm just getting caught up on your blog. I wasn't even aware you were in the hospital. We are sending all our love.
I just wanted to say HI! I am missing you on Facebook:)
Allie says she knows how you feel about the chest tubes. She said that was the most pain with her recovery. I thought it was sweet that she was trying to relate. She also asked if we could go visit you in the hospital and bring pumpkin bread...I had to break it to her that you live so far away! Tonight at bedtime she included you in her nightly prayers.
You are always in my thoughts and prayer Em!
I am sending virtual pumpkin bread and lots of hugs. Email when you can! ames143@hotmail.com
I wanted to add my voice to the collective prayers, but I can't think of anything else to say. I'm so sorry it wasn't better news. I hope the next cocktail is more effective. I love you.
Emilie,
I am deeply saddened and sorry to hear what you are dealing with right now. I hope and pray that the new chemo does its job well. I also pray that the nurses on the oncology floor are better able to "get it" when it comes to your valid needs and concerns.
Emilie - Like many, I'm at a loss for words and sit here crying trying to think of something that will make you feel better. It's been a very tough week for you and I'm truly sorry for that.
I continue to pray for your healing. I hope that this upcoming week is better for you.
God Bless Emilie.
Emilie, My heart is sad for you. I had hoped and prayed for this to be a minor inconvenience, I am so sorry. I wish I had some encouraging words or way to help, I can pray and lift you up asking God to surround you with his peace, love and healing.
I am so very sorry the news was not good. I am hoping for good things for you from the new chemo. Thinking of you all.
Im praying for you.
I'm so sorry about the results from your scans, that you have to stay in the hospital, and will be starting chemo again. I'm crying too and will be keeping you in my thoughts.
Emilie, this post was so hard to read. I found myself thinking of you in bed last night after I read it. I have really come to love visiting your blog and reading whatever is happening with you, seeing the pictures of your precious family. You are embraced and loved by so many people in this world, even people you have never met. When you are scared or anxious, I pray that you will feel us embracing you...that you will purposefully feel all of the love that is in this world for you. There are so many other things you could focus on...the tubes, the pain, the grief, but you cannot change these things. The love is there for you every moment, and it can help you.
Hugs,
Mary
Hey lady. I am so sorry. The girls and I keep you in our prayers and love you very, very much. I hope being moved to the oncology floor means they will take better care of your Hickman catheter. That pissed me off so bad to hear how they were hassling you about that. And I hope Edward and Bella give your mind temporary respite. I loved those books!
Emilie, I read your columns in The Catholic Spirit and have been following your life on your blog for quite some time, but have never written. The latest messages made me want to reach out to you and let you know that another person, among what I perceive to be many, is praying for you and your family. I hope that at some point today you feel God's love through those who care for you and love you. Peace be with you. Cathy
As others have said...what can one say? I hate sarcoma! It is so unfair! I was sad to come to your blog today and seeing the hellish week you've had. Ugh! I've been thinking of and praying for you and my friend, Kathy, who are both really battling this dreaded sarcoma right now. Keep up your fighting spirit. Keep advocating for yourself. Hold onto the tiny amount of control you feel you have. (Having been through sarcoma myself, I know how important any and all small amounts of control are to one's sanity!) Keep blogging and talking and sharing your thoughts & feelings. Cry all you need to...and know this: you are strong, very strong...stronger than you even think.
Moosh said it best so I'm not going to even try to say anything more - except prayers are being sent to you from Superior, WI. I hope that you feel great peace from at least knowing that people are praying for you.
sorry I'm late getting here, and as always just thinking of you.
Praying for you too. Of course.
*hugs*
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