Tuesday, November 10, 2009

Hospice

So here I am. On hospice. But at home. Where my husband and my family are my caretakers. Wondering how I got here. Why I got here. Wanting to go back to how things were, even a few months ago. When I was free. Independent. A social butterfly. A soccer mom. On the go. Multitasking. Not being fed intraveniously, on a short leash because I have an NG tube hanging out of my nose, hooked up to a pump 24/7. Back to when I was just Shauna with stage 4 cancer, not Shauna, homebound on hospice. It's really cramping my style.

I've not settled in well. Into this lifestyle. I'm not used to being homebound. On a short leash. Going from the couch to my bed to the couch again. I've been angry. And depressed. Distracted. Unable to concentrate and enjoy things I used to. Like reading, blogging, writing, crossword puzzles, facebooking and the sort. I just don't find joy in them anymore. So I've been watching TV and too much of it. And it isn't pretty. Any of it really. It gets old really fast.

So there is no resting on hospice. You have a revolving door. They start calling you at 830am to make appointments and then a steady stream of hospice nurses, infusion nurses, chaplains, social workers, physical therapists, bath aides etc. visit you throughout the day and week. It gets quite tiring. Especially if you're not feeling well. Sleeping through the night is impossible, hooked up to TPN, my liquid diet, from 6pm until 1030am the next morning. Infused daily through my port in my chest. On top of being hooked up to the NG TUBE suction.

So that's my life lately. Exciting. NOT.

xoxoxox
Shauna


22 comments:

Paris said...

Thank you for sharing with us. Hate that you have to go through this more than you can imagine. Would do anything to make it go away. So glad to have you writing again... it is always such a gift. Love you, my dearest friend. xoxo

Hilary Hoover said...

Shauna,

LOVE, LOVE, LOVE that you are writing, even if the circumstances are so, so awful. We are thinking of you so much.

Love,

Hilary (and the rest of your high school gang)

Rachel F said...

Hi Shauna

I am please you are back on here, have missed your updates as I don't have facebook. I am sending you big *HUGS* and love and although I have never met you I think you are an amazing woman and hope that I can send you some strength and love so that it might help in some small way.
Just know that we are thinking of you here in NewZealand

Nightscrapper said...

Even when you are down you still have a way of lifting up the rest of us. You are a remarkable person. I'm looking forward to the day when energetic, soccer mom Shauna is back. Thinking of you daily.

Rosalyn said...

Well dang. Isn't there some way to just tell them to let you rest? Getting well is such hard work. You are so brave and strong; I admire your fortitude and persistence. Hang in there girl!

KR said...

I can't imagine. SO glad that you are writing.

This is from Louis: I hope you get better. I made my mom a flower.

He feels very connected to you, which I think is sweet and I hope comforts you. Nothing like the spirit of a five year old.

So - I continue to hope, pray, for you, send love to you.

All our best - Kathy and boys

Jean said...

I hate that you are going thru all of this.Reading your story is just so heartbreaking! I hope and pray each day that you will be better soon. hang in there, keep writing, you are amazing!xoxoxo

Laura said...

Shauna,
Its OK to be angry and depressed at times. That is when you reach out to all of us and let us help and encourage you back to where you need to be. You need to know its OK and that we are here for you...through the good, the bad and the ugly.

You are loved,
Laura Metz

John said...

Hi Shauna:

We've met only briefly -- I'm John Mayer's wife -- but have been reading your blog and Facebook postings, not to mention the work you've written with Write Around Portland (I think that reading was where we first met). Just wanted to say that we were at the documentary premier tonight (your mom did a great job!). You were absolutely there in spirit. The whole audience was rapt the entire time, and not a dry eye in the place at the end. You (and Brian, of course) got a bigger round of applause than the Academy-Award-nominated doc that screened just before. (But that's just how Write Around rolls, right?) You shine in the movie. It was so inspiring, I'm sitting down now to do some writing of my own. Keep on fighting—what's the line? "Like the warrior you are."
Love, Hanna

Anonymous said...

Good Morning Shauna,

I am a total stranger to you but I came about your blog in the oddest way. My father passed away Dec. 2 2008 but during his fight he tried a treatment by the name of Salicinium. I typed it in this morning on my computer and the second hit was your blog. Reading your different posts I see that you have struggled so hard and your attitude is admirable. My father also loved life immensely and made it his perogative to enjoy life despite the diagnosis. I partially credit the salicinium for extending his life 3 years, in contrast to the few weeks he probably had to live when he was diagnosed. I wish you the best and I hope that if you have not tried the salicinium you give it a try while there is still time. Many others have also been sent home as you have but have come out of it survivors because of this compound.

Sincerely,
Noemi Maese noemi_maese@hotmail.com

Anonymous said...

Hello my dear friend. Watching the "Shauna movie" last night was such a highlight for both Alexandra and I. You were soooo gorgeous on the big screen. Your courage of sharing the good and the bad of your journey with this wicked cancer is amazing, just amazing. You are such a talented writer Shauna! I hope you continue to write for all who are fortunately enough to read your stories...as Paris says, it is such a gift!

You are one of the most loved people that I have ever met due to your vast heart. Just remember you are not alone in this battle, you have Shauna's army to use whenever you want, we are here for you my friend!

Love you! Jaci

Anonymous said...

I gotta feeling things are going to turn better for you soon. Can't explain why I have this feeling, but I do.
Amazing things happen all the time and for some reason , I feel in my gut that in a month, you will look back and say, "wow, we rallied!"

I plan to be right so keep getting better a little at a time, maybe 5% per day and you'll see a great positive difference very soon!!!

Anonymous said...

Shauna,

You don't know me and we will never meet. I am a 49-year woman with metastatic ovarian cancer. I am probably only a few steps behind you in my own journey. I have followed your blog since my own diagnosis and it has meant a great deal to me. I have missed your updates too. I am sad it has come to this and I wish you peace in your own journey. I just wanted to know what your words have meant to me.
Kathy

Anonymous said...

Shauna, I am thinking of you and so hoping that your recovery will take a turn for the better and soon.

Love,

Jane xoxo

Fabscrapper said...

Shauna...you've been in my prayers and thoughts. What you're feeling is normal...I admire your honesty and courage. It's hard to understand why bad things happen but you're journey has touched so many. Take care of yourself and know that you are thought of often. Kathryn

Sonja said...

Shauna, I have missed your updates...I am not a facebooker:) I am so blown away by your strength and courage. You are an amazing mother, wife, daughter, and friend. From the time you were first diagnosed you educated and inspired each and every person who knows you(and many who don't). Instead of sitting back and letting the disease control your life you have kept living every day to its fullest and documented your life lessons for others along the way. You keep fighting girlfriend. Don't give up...I'm not! I will see you on November 30th.

Love,
Sonja

Anonymous said...

Shauna,

Thank you so much for your honesty. You are going through so much and it must be so hard to share these thoughts with the world when we all picture you as smiling and brave. I am so sorry about all the tubes and pumps and stuff. Please keep up your blog when you feel like it. We all love to hear from you.

Big hug,

Becky

Heidi said...

Hi Shauna,
We love you and are keeping you in our prayers this Thanksgiving weekend. Peace and comfort to you always,
Jim, Heidi Wilcox and family!

laura said...

love you to pieces. xoxo

Diane said...

I admire you Shauna for continuing your blog and sharing with us your thought, feelings and struggles. You are such a strong person. I know that although we don't understand God's will, he has a special plan for you. I have you close to my heart and you and your family are in my prayers. I don't think we have ever met but I have heard wonderful things about you from Laura. :)
Sending hugs my scrap'n friend.

Anonymous said...

Dearest Shauna,

You are so strong. I love your honesty and grit. I'm so sorry about you feeling like your are on a leash. I always looked forward to your FB profile pics and updates with your beautiful smile. I picture you at your favorite bookstore meeting your posse of friends having coffee. I can imagine it takes a lot for you just to have the energy to put one foot in front of the other. You are always on my heart, my dear. You have made a difference in so many people's lives. Whenever i meet someone with a difficult diagnosis i tell them about my amazing friend Shauna. How you write about your journey and how funny and brave you are.
Love you,
Holly

Allen said...

Miss you, Shauna. Hope the Angels met you with Starbucks in there hand and a Peddie appointment. I hated to see the cancer take over these last few months. I miss the little get togethers we were having and I miss your FB messages on my wall. Your free now, Shauna. Spread your wings and soar.......

Love,
One of your 2 best fairies........