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Topic: Confessions of a hospice patient

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

Posted on: Jul 31, 2009 09:08PM

mrs_X_Sunneedazee wrote:

I have been away from the boards these past few months because I have been afraid to confess that I gave up fighting my cancer, and made the decision to go on hospice.  I was afraid of the responses I would get from those stronger women who have fought cancer longer than I have, and I didn't want to upset anyone. I have checked the boards a couple times a week to see how everyone has been doing.  I have mourned when other sisters have lost their battle to this horrible disease.  I have missed chatting with you all, but simply have not had the energy to stay on the computer, and typing is difficult because I have lost about 75% of the use of my right hand due to tumor growing in my armpit and shoulder that are compressing the nerves.   

After doing 2 years of continuous treatments, each of which failed to beat the cancer, I decided I was sick of being sick from chemo, and not from cancer.  As I made the transition from fighting the cancer, to treating the pain and problems from the cancer, I have felt better than I have in years.  I am sleeping more, and I know that my body is being taken over by the cancer.  My hospice team keep me very comfortable, and are able to manage all of the pain and discomfort that I have.  

When I quit chemo, my oncologist gave me 3 months to live.  It has been more than 3 months now, and I am doing surprising well.  With the aggressive IBC cancer that I have, my prognosis is grim, but for some reason it doesn't seem to be progressing as fast as everyone thought it would.  I have been able to enjoy the summer and go on a couple of trips with my family, and a cruise to Mexico with my husband.  I never would have been able to do these things while I was doing chemo.  I would have simply been too sick.   

I am truly at peace with my decision.  I know it was the right decision. I am a woman of faith, and I know that God's plan was not for me to beat my cancer.  I know He has a purpose for calling me home early, and I know that I will be my children's guardian angel after I die.  I know that God will take care of my family, and that they will be comforted through this difficult time.  

There are days when I long for heaven, and days when I long to stay here on Earth.  It is hard to deal with emotionally sometimes.  I have been reading a lot of books about death and dying, and life after death.  I know that there is life after death.  And I know that the life after this one is peaceful, wonderful and beautiful.  I don't WANT to die, but I know that this is what is meant to be.  

I will try to check in with everyone more often.  I love all of you, and am so grateful for all of the support this site of sisterhood has given me throughout my battle with cancer.  

Like the heading of this forum, I am trying to live well, and trying to die well.  It is a difficult thing to do. 

Every day is a gift...........www.amberchase.weebly.com Dx 5/10/2007, IBC, 6cm+, Stage IV, Grade 2, 3/5 nodes, mets, ER+/PR+, HER2+
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Jul 31, 2009 09:46PM dlb823 wrote:

Amber ~ I was actually thinking about you earlier today, wondering how you're doing.  I was going to check to see if you had posted at all recently, so I was really happy to see an update from you tonight.  As usual, I am overwhelmed by your perfect faith, as well as your ability to communicate your feelings as beautifully as you always do.  I truly feel blessed to know you.

You and your family are in my prayers.     Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jul 31, 2009 10:17PM makingway wrote:

Amber-I truly support your position. Others may tell you what 'they' think you should do, but it is YOUR body and YOUR mind. I wish you peace and comfort, and no scary days or nights :)

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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Jul 31, 2009 10:28PM barbe1958 wrote:

Amber, You have been in my prayers before sister, prayers with angst and concern for your well-being. My prayers for you now are more of peace as you share your faith in your God. You have truly taken the road less traveled, one that many of us may chose to follow. I have said before, we are all on this road of life together, some just walk faster than others. I pray you walk in the glory of God with Jesus by your side. Thank you for giving me the opportunity to say God Bless and God Speed.

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/16/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/11/2016 Arimidex (anastrozole) Radiation Therapy 2/17/2016 Whole-breast: Lymph nodes, Chest wall
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Aug 1, 2009 12:57AM ElaineD wrote:

I'm another who completely supports your decision. It's one we all at stage 1V will have to do sooner or later, and it's one which must take a huge amount of courage. I hope nobody attempts to persuade you to do otherwise-as it's a decision that only you and your immediate family can make. I'm so glad that your QOL has improved as a consequence of this-may you have as much time as possible enjoying all that gives you pleasure. Please keep us updated, when you feel able,x

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Aug 1, 2009 01:47AM dani52 wrote:

With deep appreciation

I am so happy to hear from you and to have this opportunity to thank you personally for creating a wonderful forum for lost sisters to find their way.  I found peace and hope and courage and strength through your posts on IBC and from all those walking in your footsteps.  Even at this most difficult time you continue to show us the way, with grace and love, with honesty and humility. 

With great admiration      Dani 

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Aug 1, 2009 03:14AM navygirl wrote:

Amber, all I can say is; WOW. I echo the thoughts so eloquently stated by your friends. 

life is short, play hard
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Aug 1, 2009 11:22AM konakat wrote:

Amber, thank-you for posting this.  Thank-you so much -- your words inspire me now and will inspire me when it's my time.  I hope you continue to find joy and peace.

With love,

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck). Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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Aug 1, 2009 11:34AM kbugmom wrote:

Amber you are brave lady. One who does not worry so much about your decsion and that may be part of why you are still here. I am glad you are still around. Thank you for joining us here again and updating us. May God continue to bless you.

Susan

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Aug 1, 2009 02:06PM mason204 wrote:

God bless you.

I was moved by your thread.  Each person is entitled to do what they think is best.  I'm glad you found peace as it's often so elusive and there's no need to justify your decision.

What I'd give to have a good night's sleep.  One cannot discount the importance of rest and the impact it has on healing.

One of my greatest fears is not being able to "die well" if that makes sense.  I'm glad to hear that hospice is meeting your needs.

Although it's difficult, thank you for taking the time to post your update.

Cheryl.

Cheryl - Mets dx Aug/06 (lungs, liver, bones, abdomen) Dx 12/23/2003, IDC, 5cm, Stage IV, Grade 2, 4/10 nodes, ER-/PR-, HER2+
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Aug 1, 2009 02:13PM hollyann wrote:

Amber, God bless you, sweetie....I too support your decision.......It seems you have made the right choice since you are able to enjoy life and not be sick from chemo.......You know I have always been told that doctors do not know our expiration dates, only God does......i am glad to see you posting....I too wondered what had become of you........I want to thank you, Amber, for all you have done for me.....You have given me inspriation and strength through your posts.....You have shown me dignity and selflessness.......Even when you were sick from the chemo you took the time to post and help your sisters......I PM'd you,sweetie.....

Hugs and Love....Lucy Dx 1-15-07 IDC stage 1b grade 1, 1.6 cm.....Also DCIS grade 3, both in left breast Dx 1/15/2007, IDC, 1cm, Stage IB, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Aug 1, 2009 04:20PM spar2 wrote:

I ditto hollyann.  You, Amber are awesome and with God for us who can be against us.  Enjoy life and who knows God may surprise you and give you many months to enjoy your loved ones.  You have such joy and dignity, you are just amazing.  There are just no words.  What faith.

www.spar2.multiply.com Lets help make each other's life better
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Aug 1, 2009 04:33PM arnie wrote:

Amber...I just went through hospice with my dear sweet sister, Margee, last fall.  Even though it was a different form of cancer, she too decided that she would do no more treatment.  She outlived her prognosis and left her immediate and extended family and friends the gift of a strong faith, courage and love.  I'll keep you and your precious family in my prayers...

((((((((((hugs))))))))))))

Dx 2/24/2009, DCIS, 1cm, Stage IIA, Grade 1, 2/22 nodes, ER+/PR-, HER2-
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Aug 1, 2009 04:44PM pip57 wrote:

Amber,

Your words expressed your sense of peace very well.  You remind me of my daughter who said much the same thing when she was told she was terminal at 16 years of age.  She truly had an aura of peace about her and a conviction that she was on her way to a better place.  People would visit her and feed off of her serenity.  I can tell you that she had some incredible insights and a tremendous faith.  I can also honestly tell you that the moment of her death was a beautiful moment, as odd as that sounds.  It was as magical as her birth.  God bless you and your family.  

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex Dx 2/1/2007, DCIS/IDC, Left, 3cm, Stage IIIB, Grade 2, 9/16 nodes, ER+/PR+, HER2-
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Aug 1, 2009 07:16PM WingsofHope wrote:

Hi Amber,

Glad to see you here and I too respect your decision.  I was concerned about you a while back and went searching for ya....  so I read your blog.

I am glad you are at peace with your decisions and your posts certainly inspires others. 

thinking of you more than you know......  I guess it is true that we bless others by our experiences both good and bad.

~dana~ Dx 11/12/2008, IDC, Stage IV, ER+/PR-, HER2-
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Aug 1, 2009 07:45PM kenzie57 wrote:

Hi Amber:

Thank you so much for posting.  It gives me support in which ever decision I need to make.  I am so happy you have had the nice trips that you have had and wish you many more.

Thanks again and take care,

with love,

Linda

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Aug 2, 2009 08:12AM lovinmomma wrote:

Amber,

I have been following your blog and I am happy to see you here. I am praying for you and for your family. You are brave in the face of a terrible choice and circumstance. i only hope that when i get to this stage that I can handle all of this with the grace that you have. You have inspired me to blog to leave a written legacy for my children.

Kimberly 45 yo fighter Dx 10/1/2008, ILC, 6cm+, Stage IV, Grade 3, 26/26 nodes, mets, ER+/PR+, HER2- Chemotherapy 10/2/2008 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/7/2009 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Hormonal Therapy 5/12/2009 Femara (letrozole) Surgery 7/10/2011 Reconstruction (left); Reconstruction (right) Chemotherapy 9/24/2012 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 1/28/2013 Halaven (eribulin) Chemotherapy Xeloda (capecitabine)
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Aug 2, 2009 10:14AM swimangel72 wrote:

Amber you are a beautiful person, inside and out - as is your family! Thanks so much for sharing your "confessions" and your blog. I have sent your information about IBC to my college-age daughters - we will all be praying for you!

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53 Dx 2/5/2008, IDC, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Aug 2, 2009 12:20PM lexi4 wrote:

Dear Amber,

Thank you for posting and sharing with us. You are a strong woman. I am so happy to read that you are being kept pain free and are able to enjoy time with your family. You knew when to say "enough". What a tough decision.

Thank you for sharing the terrific pics of you and your beautiful family. I hope that you enjoy many more happy memories together.

Hugs,

Lexi

Dx 8/22/2005, IBC, 3cm, Stage IIIB, Grade 3, 5/6 nodes, ER-/PR-, HER2+
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Aug 2, 2009 12:29PM leaf wrote:

It is so important to honor your wishes.  The palliative care doc at my hospital says there are studies that show that, overall, people who are considering hospice, and choose to go into hospice, live longer than those who choose not to go into hospice.

You have made a decision that the quality of your life is very important to you. You have articulated your feelings beautifully.  

I fully support your decisions.   I know almost nothing about sailing, but it sounds like a boat heading off to calm waters.  We all have our own  journey, and it sounds like you are following your way. Gentle hugs from far away.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 2, 2009 12:37PM coonie wrote:

Amber,

I admire your grace and dignity.

Some day....when it's time, you will be a wonderful Guardian Angel.

God Bless you and your family!

Chemo: (4 AC) (4 Taxol); 1 Year Herceptin; Bilat. Mast.; Ooph; Last Arimidex Pill 5/31/13 Dx 11/14/2007, IDC, 2cm, Stage IIA, Grade 2, 0/15 nodes, ER+/PR+, HER2+
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Aug 2, 2009 03:16PM hollyann wrote:

Amber, thinking of you today, sweet sister.....I am calling your secretary to try to get your addy to send you cards......Like Coonie says, you will make a beautiful Guardian Angel...........Gid bless....

Hugs and Love....Lucy Dx 1-15-07 IDC stage 1b grade 1, 1.6 cm.....Also DCIS grade 3, both in left breast Dx 1/15/2007, IDC, 1cm, Stage IB, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Aug 2, 2009 03:37PM sheila888 wrote:

Amber.God bless you and your family. I admire you for your strength.

Hugs and more hugs.......

Sheila

Sheila♥ Dx 4/8/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ Dx 8/21/2015, IDC, Left, 1cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 10/13/2015 Mastectomy: Left; Prophylactic mastectomy: Right Surgery
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Aug 2, 2009 05:59PM happy29 wrote:

Thank you for sharing this. You are so strong through this and have amazing faith. I admire you. I am happy to hear you are having good days with your family.

 

Dx 6/9/2009, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes
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Aug 2, 2009 06:01PM flash wrote:

Amber,

You may not remember some of our conversations back in the very early days on chat.  At that time you felt the quality of life was important.  Good for you for following your convictions and doing what is right for you.

May all go well for you and your family. Peace and blessings to you

multifocal multicentric IDC, DCIS, pagets et al. - er+,pr+ her2+++, mast,chemo, ooph, hyst Dx 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+
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Aug 2, 2009 07:26PM EGAL wrote:

Hi Amber,

  I just checked your blog and few days ago and was sad to read what is happening but totally understand your decision.   I saw the pictures of your beautiful children~how sweet.  Loved the photo of you and your son kissing.  What a special mom they have!  You are in my thoughts and prayers~

Ellen

EGAL 10/06 dx'd with IDC Stage 3, 10/08 brain mets Dx 10/19/2006, IDC, 6cm+, Stage IV, Grade 3, 15/17 nodes, mets, ER-/PR-, HER2+
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Aug 3, 2009 06:59AM faithandfifty wrote:

What a treasure to have your "confession" recorded here, as a couragous & faith filled response to the unfathomable decisions that must be made along this journey on Planet Earth.

Amber. Thank you for your willingness to expose yourself to others who might not share your sense of calm and your sense of acceptance. That is an incredible legacy that will resonate for years as others come to similar crossroads and consider all possibilities.

I rejoice to hear of the trips & adventures you've been blessed with. Those memories will be the rock of peace to your husband and family upon later reflection.

May you be given the strength to read these posts and share other insight as you consider your awaiting "Guardian Angel" status. May the training for that new job description go smoothly here as you complete it's preparation.

We are all in admiration of your grace and dignity.

You're teaching us well.

Thank you.

xx00xx00xx00xx

Strength and courage.

Strength and courage.

Strength and courage.

((((((((((((((((((((((((((((((((((Amber))))))))))))))))))))))))))))))))))))

Keep up with my travels at: www.rainbowswithinreach.blogspot.com
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Aug 3, 2009 07:08AM hollyann wrote:

Thinking of you today, Amber......I feel blessed to know you and thank you for showing me what dignity and selflessness looks like......You are a brave Warrior Sister and I ma honored to call you "friend"......My prayer for you today is that all your needs are met and then some....I pray you are blessed with more time awake with your family today with renewed strength.....Sending you gentle hugs through cyber space.......My only regret is that we did not get to meet in person.......I am sure you are just as beautiful in person as you are on this board..........

Hugs and Love....Lucy Dx 1-15-07 IDC stage 1b grade 1, 1.6 cm.....Also DCIS grade 3, both in left breast Dx 1/15/2007, IDC, 1cm, Stage IB, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Aug 3, 2009 10:22AM 2timer wrote:

What a beautiful and thoughtful post.  I am sorry the chemo didn't work and you felt you had to take this step but it's your right and things seem to be working out for you.  I am glad you are feeling better and are able to enjoy the summer.  I will pray for you that things continue to go as well as they have.  Hugs.

Dx 3/19/2007, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Radiation Therapy 6/26/2007 Breast Hormonal Therapy 11/1/2007 Dx 7/2/2013, IDC, 1cm, Stage IIA, Grade 3, 1/9 nodes, ER+/PR+, HER2- Surgery 8/28/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 10/24/2013 AC + T (Taxol)
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Aug 3, 2009 10:32AM wackyjackie wrote:

Amber,

You were an inspiration to me from our radiation treatments and I am in awe of your decision.  May God bless you and your family.  I hope you realize how much you have helped me and many many women on this board.  You are truly a special person.

Hugs and hugs and lots of love and prayers for peace,

Jackie

Dx 5/25/2007, IDC, 3cm, Stage IIB, 3/13 nodes, ER+/PR+, HER2-
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Aug 3, 2009 10:34AM nanneranner wrote:

I hope your pain stays managable... All my love to you.  I watched my mother take this road, and she traveled it with dignity and grace.  I can only hope that I will be able to have the courage and wisdom to say "enough" and go with peace.  Thank you so much for writing about your journey, and giving those of us who are looking for answers some comfort. 

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