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Harbin in Hospice

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    Posted: Aug 11 2013 at 10:47pm
Dear all,

I have been agonizing over this post for days. I received permission from the family to post this today. It is only because Harbin had such a supportive streak in her that I am doing so. I know she would always want to help others and perhaps her story will help a few. If it does, I think we would both be happy. Incredibly, I have found her beautifully compassionate nature for others intact despite her difficult journey. It is just who she is and perhaps that is why we have become close friends. I so admire her for that trait.

This palliative care journey started about 6 weeks, or so, ago when Harbin's Breast Medical Oncologist told her that additional chemotherapy would probably do more harm than good and she was recommending that, after Harbin's awful progression, that she seek home nursing care. The oncologist did not use the word hospice because "Harbin never mentioned it so I did not think she wanted me to say anything. She was always such a fighter."

Shortly after this consultation, Harbin's DH asked me to try to help them find a Home Hospice program but to, please, not to speak to Harbin about it. He wanted to gather the facts and then present various options to her. I got the information and passed it along to him and then went to visit Harbin in her home.

After a beautifully warm welcoming hug she asked me "tell me everything about Home Hospice" and I told her "but I was told not to say anything to you." "No, no...my husband and I spoke last night and he knows I want to talk to you." We spoke for several hours, as always, honestly. Her daughter was present for most of the talk and all I wanted to do was try to comfort her and tell her "this will be o.k." but I could not do that and she and Harbin understood that this path would be the best 'quality of life' path for her, but at the same times were realistic about the future.

A nurse from a Hospice Facility came to their home the next day and I was on the phone with them. It turns out that in the last few days prior to this meeting that Harbin was experiencing very significant chest pain. When she told me she had "a lot of pain" that was so very, very significant because she very rarely complained. Her medical team suggested that Harbin have 5 fractions of 'palliative' radiotherapy to relieve her pain. At first the Hospice nurse said that would be fine(meaning Harbin could enter Home Hospice and have the 'palliative' RT at the same time but then she checked with her superior and found out that for 'insurance' reasons it would not be fine and that she could only start Home Hospice after her five days of treatment.

She began her course of radiotherapy as an out-patient and was totally, totally wiped our physically after the first treatment and was also experiencing great difficulty breathing. It took her about 4 hours round-trip to go to the hospital and when she came home I spoke to her and I had never heard her sound so tired. I suggested to her that when she went the next day she should have her radiotherapy but to then go to the Emergency Dept and tell them that she was having great difficulty breathing, which she did and her Breast Medical Oncologist got her admitted.

The Emergency Dept. strategy was told to me by a Breast Medical oncologist who could only make an appointment for the patient I was accompanying to have a Brain MRI ten days from the consultation. The patient lived 1500 miles away and was experiencing terrific headaches and we were advised to go to the Emergency Dept. The ED folks were not too thrilled to admit her but she had her Brain MRI that night and it showed brain mets and treatment started immediately. An important lesson learned.

The other thing is that there seems to be some sort of economic advantage to staying at a critical care hospital (for at least 72 hours) and then being directly admitted to a skilled care nursing facility rather than going home and then being admitted to a skilled care nursing facility. I think admission is easier because the nursing home knows that Medicare will pay the first 30 days if you go from critical care hospital rather that your home.

Perhaps there are other here who are more knowledgeable about this? I went through this whole process a few years ago with a patient who was admitted from her home.

In fact, Harbin made the three days, and then some, but she had to battle with the hospital who wanted to release her the day before. Hospitals, these days, will make you leave even though you are terminallly ill

In any event, Harbin was admitted to the in-patient Hospice unit of a skilled care facility where where she is getting "excellent" care as her DH reports to me. Fortunately, the radiotherapy had worked its magic and she is pain-free. However distressingly she has several other issues that are not solvable. Under the circumstances she is as comfortable as possible but this journey is coming to an end. 

The other very important thing is that Harbin and her family received counseling from Hospice professionals on psycho-social aspects of this journey. I think the fact that her family understands the path and is sadly resigned to the future is better, in my opinion, than encouraging their loved one to enter new treatment plans even after an oncologist says it, most likely will not work, and then praying for a 'miracle.' That is just my personal opinion. I know others may disagree and of course, I understand and support your right to feel differently. For this family, their main prayers, recently, have been for Miha to be pain-free and as comfortable as possible. And unfortunately, most oncologists, from my experience rarely suggest Hospice, even when clearly needed. 

The other lesson in all of this was one I was told by a very dear oncologist friend of mine many years ago. I wanted to visit a friend with advanced colon/liver cancer who lived many thousands of miles away, and I was planning to be in his country 5 weeks down the road and I asked the oncologist if he thought I could wait the five weeks to see my friend. He said "with advanced disease I always tell loved ones to visit as soon as possible...you just never know what may happen..If it is important for you and your friend to have the visit, I would suggest you go now." I followed his advice and had the most extraordinary two days with friend. For the first time in months he got dressed and I drove him to the house where he grew up which was in a very ragged part of town. I saw the outhouse the 9 people in his family used and he described the three bedrooms where the nine of them lived.

We then went for lunch and he had a beer which he thoroughly enjoyed "don't tell my wife" Smile and then we went to see a James Bond movie. First time to a movie for him in over a year. He slept through half of it but I brought him up to date and we talked about it on the way home. He also told me that the one thing he really really missed was going to Mass as it was an hour away and he could just not make it. I was able to speak to his Archbishop (who was a childhood friend of his) and he was able to arrange visits from his priest, sister and various congregation members who came over to pray with him and comfort him and his wife. I believe the in-person conversations we had were so very, very important. Somehow, I don't think he would have shared this with me on the phone.

It was also important for him to ask me what I thought and to tell him honestly about his prognosis. I told him what I thought but that no one knows with any exactitude what the timing would be. He told me that he disagreed with me...but it was a friendly discussion and we were both glad he could bring it up. 

I went back five weeks later as originally planned and found my friend greatly weakened. We could not of had the same two days. He was just too fragile.

Sorry to write so much but I feel the point is important. Miha's daughter was able to take home leave to be with her Mom and I am so glad she did.  Her dad is also taking home leave and will also have 10 working days of bereavement leave. 

If there is a loved one on the end-of-life journey please try to show them your love by your presence, if possible, sooner than later. And incredibly, Harbin always tried to find the beauty in each day. I believe that each day she saw the love her family has for her was cherished as was our friendship. 

I am filled with many, many, many beautiful memories of Harbin. I shall hold on to them till my last breath. An extraordinarily lovely woman.

Harbin, my dear, dear friend, I love you and pray you are peaceful. I am deeply saddened that things are where they are but I believe in choosing Hospice you chose the right path both for you and your family.

always,

Steve




Edited by steve - Aug 14 2013 at 8:12am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2013 at 11:17pm
Harbin and Harbn's Family,

Continued love, prayers and gentle hugs,

Harbin, thank you for being YOU.


Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2013 at 10:12am
I've been involved with Hospice many many times and a dear friend of mine is on the local Board of Directors. I have found the nurses and staff to be wise beyond what most of us could endure and they are able to navigate the system with deft efficiency so as to ease the stupidness the system sometimes insists upon. It is indeed, once that bridge is crossed, an emotional cradle as well as a physical security that lifts one.
 
A note, the Hospice staff were able to work out a physical therapist to visit once a week. That may sound strange but we found that the stress of anxiety and pain knotted muscles up and having a specialist come out to help loosen up the knots and soreness, as well as rub the bruised areas from shots etc was greatly helpful. Besides that, it was one more wise person to join the team.
 
A story I've told often. We had one non Hospice nurse who was NOT a good choice. She was not gentle. I had bought a kitten for my dad which had bonded very very strongly with him. She was a tigress when it came to her best friend and slept on his chest most of the day. But one morning the nasty lady was particularly rough with dad while I was in the kitchen making breakfast. I heard dad cry out and then the nurse scream and ran into the room where dad's kitty had jumped on her shoulder and was biting her neck. Dad had a smile on his face and said, "That's my kitty". I pulled the kitty off the nurse, she jumped up to her guard position on dad chest. It was her last day at our house but the kitty remained at her post. 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Dear Mainy,

well I didn't think I would ever laugh reading a post on this thread but then again I am dealing with a marvelously bright, caring woman who knows the value of humor to keep one's sanity and therefore posts Tim Conway/Carol Burnett/Harvey Korman utube videos that have often brightened my day. 

So thanks for the laugh. I totally agree...hospice nurses are my heroes but at times Nurse Ratchett can rear her ugly head. Glad kitty was there to protect.

I have found that palliative care specialists (as in both supportive care services while in treatment and end-of-life hospice care) often have more knowledge than an oncologist regarding ways a patient can be more comfortable ranging from pain management and the, often, resulting constipation, assistance with breathing, massage therapy (as you mentioned) and psychosocial support. Understandably the oncologists normally don't have the time for it and are not trained to do it properly so why don't they suggest their patients see palliative care experts more often? Instead, often, I have seen them micro-manage the patient with less than optimal results. ASCO is aware of the problem and has been trying to change the landscape. Recent ASCO conferences have had sessions on palliative care and they have been well attended.

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2013 at 1:35pm
Thanks Steve. For most (hopefully) of us, the Hospice experience is a new journey and it is bewildering to figure out who does what and who and where to call for explanations and help at midnight...I'm one that has learned that doctors are indeed wonderful and caring people who (and I believe rightly so) stay in their niche of the treatment and care we receive. Understanding that has always been difficult for me to wrap my head around, I have believed that my doctors have been my Everything.
But I've come to understand that the Hospice people and those that they are networked with are the best at the frontlines of this portion of our treatment. They are brave when I shake with frustration, love and fear.
 
Dad's kitty also developed a habit of meeting people at the door. She would sit on the couch arm and leap up to everyone's shoulder. If she approved, she would ride back to dad's bedroom with her arms wrapped around the 'alarmed' person's neck and look over their shoulder at dad. Darndest thing I've ever seen.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2013 at 7:32pm
Harbin,

Dear friend, I am saddened to hear the news, but glad you have entered hospice.  I pray that this next phase will be peaceful and painfree as possible.  Both my parents sought hospice care and I can say it was the most wonderful experience for all of us.  The compassion and caring administered by all was truly remarkable.  All I wanted for my mother was to be as pain free and comfortable as possible.  I believe they helped us achieve it for those last two weeks after her stroke.  

Love you Harbin.  You've been such a good friend to all of us and showed us what courage is battling this horrible disease.  Thank you for always being here for us and helping us out.

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2013 at 7:49pm
My dad has been on hospice for the last two weeks, and I cannot say enough good things about the nurses and aide who have been seeing him and managing his care.  He has been in a skilled nursing facility for over five years, and while his care there has been pretty good for the most part, it is much, much better now that he's on hospice.  People who work in the hospice field are special people -- it takes so much compassion, love, patience and understanding to work in this field.  One of my dad's hospice nurses, who found out that he had been a song leader in our church for 50 years, sings hymns to him every time she comes (has a beautiful voice too).  

Harbin (and family), I pray that you find much comfort and peace during this journey.  Thank you for what you have done for all of us and for the inspiration you are to so many.  

DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Dear Rachel,

Well your broke the dam with your story of the nurse singing to your Dad. It was ready to break...on the cusp for awhile...but that beautiful vision put me over the edge.

I can't properly express the admiration I have for Hospice nurses. Truly extraordinary professionals. 

One friend of mine is now earning, as a Hospice nurse, 1/3 of what she made as administrative head of all nursing services at a major hospital. "Best move I ever made" she told me..."I am so honored to accompany patients on their final journey." 

warmly,

Steve

p.s. and to one of my favorite folks on the planet...senior administrator at an important cancer center who moonlights 4 nights a week as a volunteer Hospice nurse. I still don't know how you do what you do, but all I can tell you is that I am honored that we are friends and thank you on behalf of the family and myself for your recent guidance regarding Harbin. 






Edited by steve - Aug 12 2013 at 9:59pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2013 at 10:29pm
Keeping Harbin and her family in my prayers and thoughts.

Wishing you pain free days filled with peace, Harbin.  

Love,
Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dldlogan Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2013 at 11:05pm
Steve,
My sister had breast cancer in 1995 and died at age 42.  That was before they classified anything TNBC.  She was already stage 4 when diagnosed.  She was under hospice care at a facility for the last few months.
 
I lived 4 hours away and had to work, so I would make the trip every weekend.  I would leave home on Friday right after work and stay at the facility until I had to return Sunday night to begin work on Monday.  The people there were extraordinary.  They would see I had a place to sleep in her room and food to eat.  Some of the workers would even take me out to eat to get away for a while.
 
Her husband had the hardest time with her illness.  He was sure she would recover and return home with him.  It was like something or someone was holding her here, so we finally contacted his church to have a prayer service to release her from this life. 
 
I told my boss at work that I was given a "gift" by being able to be with her in those final hours.  Though I was not there when she died, she knew I had released my hold in order for her to cross over and not be in pain anymore.
 
I wish the best for Harbin and her family.  I hope when the time comes they can find peace knowing they did everything they could and release her into God's hands.
 
Lots of Love,
Diana 
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV
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Dear Diana,

I am so sorry for your loss.

I know you were not there physically at the very end but I believe you were there in your sister's heart and I am sure you will carry her in yours as well and always shall. I believe that somehow there is a permanence to some loves. Next year will be the 50th anniversary of my Mother's passing and she remains part of me.

Sure it is not as raw as it was at the time, but it is still there..sublimated well, at times, but at times I still ache. I have had to give up on thinking about "it is just nor fair." My mother gone at 46. So many young women like your sister. Countless others. There is no 'fair' here. It just 'is what it is' at times and all we can do is try our best to fight the fight and hopefully receive some guidance as to when to stop fighting. 

love back at you,

Steve



I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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   Dear Steve,   It is reassuring to know that Harbin is in good hands in Hospice. We have a wonderful Hospice here and it is amazing how it is run by so many of the people of this city who volunteer there in one capacity or another.   The nurses are exceptional as well as all of the staff from what I have come to know. I plan on becoming one of the volunteers as soon as I am able as I have always wanted to work with the dying.

                 My prayers remain for Harbin and her family and that every one of their needs are met.
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Keeping Harbin and her family in my prayers...
Wishing for pain free days comfort and peace for you,Harbin you are a special person.
hugs
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Dear TNBC Foundation family,

Driving to dinner tonight with my wife my phone rang and I saw it was Harbin's DH. The first thought that ran through my mind was "she's gone" and she is. He told me that she died at 10:15 this morning and in accordance with her wishes (as she had expressed privately to me) she did not want any ceremony and instead she was cremated today and her ashes are already in an urn in a special niche in her resting place for the next 5-7 years. After that, again according to her wishes, her ashes will be scattered near the Golden Gate Bridge.

I am not going to post a Memoriam on the board as I believe that would not be her wish. 

Harbin's DH told me that he and the girl's are o.k. They were prepared.

I guess one blessing is that she "was totally peaceful when she passed away. No pain, we didn't even know she had died." 

Miha, I shall miss you my dear friend. You valiantly fought and fought and fought, rarely complaining, and along the way you helped many. You shall forever inspire me.

Thanks to all for you wonderful support for Harbin on this thread and others before. We have a beautiful family. You all inspire me as well.

Taking a few days off for my personal bereavement period but I shall return and if any of you need me I shall still be available. Just need a break. I ache.

with my love to all here,

Steve




Edited by steve - Aug 14 2013 at 12:10am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Harbin,

May you rest in Eternal Love and Peace.
I am Grateful for knowing you through the forums.

Grateful for today...........Judy

-------------------------------

Steve,

Please convey my love, caring thoughts and deep sympathy to Harbin's family.


Grateful for today............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2013 at 8:06am
Harbin,

All your posts will be your memoriam to us.  You were a friend to all of us and helped and supported us when we needed it most.  You are now at peace, pain free my friend.  You were a special person and your family will have a lifetime of memories to hold them close.  Hugs.

Donna

PS:  Steve, please take care of yourself.  You give so much and I know it takes a toll on you.  Be gentle and rest.


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jude Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2013 at 10:13am
Steve,

I am so sad to learn of Harbin's passing. Though new to the forum, I could tell from the many posts about her these last few months that she was a special friend to the entire TBNC family. Her bravery in the face of this horrible disease is an inspiration for all of us. Please send my sincere condolences to her family. May they find solace in the knowledge that she meant so much to so many.

Judy
Dx TNBC 1/20/13; age 60 BRCA-, 4.7 cm, stage 2A, grade 2
lumpectomies 1/24/13 and 2/15/13 clear margins not obtained; SND 0/6
TAC chemo completed 6/21 bilateral mastectomy 7/25
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2013 at 10:25am
Remembering and thanking God for Harbin. She was a friend to all on this forum. May her family be comforted by the grace of God. Praying for her family.

Hugs,
Genie
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2013 at 12:27pm



        Harbin, May You rest in Peace and Eternal Joy and know the Happiness that never ends!
              
                 My prayers go out to the family and Steve, do get some rest...Love, Annie
              
           .     
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Status: Offline
Points: 650
Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2013 at 3:23pm
Harbin,
You are such a beautiful soul and i feel blessed to have shared your time here. May you rest in eternal peace. My deepest sympathy goes out to your family.


Thank you, Steve for helping to carry us along this journey with our sister Harbin.

Love and Peace, Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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