Prayers needed for Sheila

[Jen]

Please keep my Mom Sheila in your prayers. She hasn't been able to get her chemo lately due to low platelets, etc.. She called me this morning and said she was going to be admitted to the hospital for IV's and pain management. Please lift her up with the strength of your prayers you've done it before please do it again!!

[NEDenise]

Prayers and much love headed her way!
Please keep us posted.
Denise

[sarah]

hoping she can get her chemo today and pain is being managed.
hugs and love
sarah

[Patb]

Sheila is in my prayers and I hope the hospital
can releave her pain and give her strength to
get chemo. What a wonderful person and such
a fighter, you go girl.
patb

[StephN]

Thank you, Jen.
This is a hard time for some of our long-time members and good friends. Sheila's loyalty to this site and loving help offered here will be repaid in many, many fervent prayers for her body to recoup and be able to keep fighting as she wants.

I know she is not yet ready to give in to this pernicious disease.

[BonnieR]

Adding my prayers. Keep the faith.

[Jackie07]

Thanks for the update, Jen.

Please let your Mom know that we are all praying for her. Hope her platelet count will improve and she can get her next infusion soon.

[Ellie F]

Prayers being said and sent for Sheila. At the moment it's really upsetting to hear that some of our long term sisters on the board are having such a hard time. I hope Sheila's blood improves and they get her pain under control
Ellie

[Paty]

My dear Sheila, hope that time in hospital goes fast and smooth. I love you dearly. Hugs and good vibes.

Paty

[Mary Anne in TX]

So willing to pray for such a faithful warrior. Sending lots of love too. ma

[Ceesun]

I will be praying for her. Ceesun

[Soccermom]

Add my prayers for Sheila also.. Hoping she will be able to rebound!
Marcia

[karen z]

Thank you Jen,
Your mom is in my thoughts, prayers and heart.
K

[michka]

My heart is heavy to know Sheila is suffering. I hope the Drs are able to put the pain under control and that they can get her back on chemo. I will keep Sheila in my thoughts hoping for better news. Michka

[Redwolf8812]

praying...

[tricia keegan]

Sorry to read this and Sheila will indeed be in my thoughts and prayers. xx

[Jeanette]

My thoughts and prayers go up for Sheila. Pray that she rebounds soon, we need her here, Jeanette

[Becky]

Many prayers and much love for my dear friend Sheila. May she drawn on all of us for strength.

[KDR]

My best wishes for Sheila to always feel good, let them take good care of her at the hospital.
Karen

[Mandamoo]

Sending love and healing thoughts that Sheila's pain can be managed and her bloods improve for chemo.
Another inspirational sister - my heart is full for you.
A xx

[Pray]

My heart is greatly sadden for Shiela! The thought of this wonderful woman being in pain is simply heart wrenching. Gods blessings to you Shiela. I am praying so very hard for you.

Peacem my friend,

Love,

Nancy

You took my fear away, I pray to God he can take your pain away!

[Andrea Barnett Budin]

Thank you Jen for including us! Sheila, You know I have loved you and your indomitable strength and courage for so many years. I remain a loyal fan, ever grateful to you for all you've given of yourself.

Now it is our turn to give to you, our fervent prayers, our continuing love and admiration.

Praying that you will soon feel relief from the pain and able to get your chemo. I remember the amazing prayer for chemo despite low blood counts and being stunned that I would ask for such a thing. I knew -- it is what was needed. And I know, you are fighting as best you can, because that is who you are! A valiant Warrior Women of mythical proportions.

Prayers. Love. More prayers. More love... I promise...

[chrisy]

Jen,
I had just checked in with her this afternoon via text...too much. Sheila is always in my prayers and stalks my thoughts all day long, all the time. What a strong lady, good friend, and beautiful spirit.

Much love and prayers
Chris

[JennyB]

Many prayers to get the pain under control and the platelets up so this brave woman can carry on the fight
Xx

[alicem]

Jen,

Thank you so much for letting us know. I have been following her posts on facebook and I just hate that she is in any kind of pain at all. I hope this hospital stay is able to get things under control, and bring her platelets up for a chemo treatment. I'm sure this is what she is hoping for.

I want you to know that I adore your Mom. Thank goodness I was able to meet her in person once in San Antonio. I love her like a sister and I wish and pray nothing but the best for her. She is the picture of courage and strength and I wish I could do something more than just pray, but I believe our prayers our powerful too. I continue to pray for her comfort and for peace.

~alice

[sassy]

Much in my prayers, Sheila.

[Yorkiegirl]

Many prayers going out to Sheila.

[Nancy L]

Jen,

Your mom is a very very special human being--never complaining and always worried about everyone else. Anyone who has read her signature knows she is a fighter. She and I communicate regularly because we both have neck node metatasis and resulting pain.
She has given me strength several times recently and I am a lucky woman to have meet her on this site. Please give her a big hug and let her know how much she is loved by all of us.

I am saddened to learn that her pain level requires hospitalization but that is probably the best place to turn this around. Please keep us posted on her progress.

[lkc Gumby]

prayers going out for dear Sheila!

[caya]

Prayers coming from Canada for our dear Sheila!!

all the best
caya

[Mary Jo]

Praying for my "sister," Sheila. Peace, strength and healing.

Love.....

[ElaineM]

Hugs and a prayer going Sheila's way from me.

[yanyan]

Prayers for Sheila! I remember Phil posted some advice on how to get the palets up for Lorraine while she was on getting ready for Tdm-1. Maybe he can help.

[SoCalGal]

Sheila, sending prayers for pain relief and healing...sending love, too.

[NEDenise]

More prayers...
More love...
Can't stop thinking about Sheila being in pain...so wrong...

Sheila, who spends so much time and energy comforting others...
Hoping all our prayers are answered soon.
And, hoping Sheila can feel our love surrounding her as she heals.
Denise

[Barbara H.]

Hi Sheila,
My thoughts continually are with you and I hope that you receiving help to control your pain. You deserve a break from this. I hope you will able to start treatment soon and that it will shrink those nodes.
Kind regards,
Barbara H.

[Laurel]

Jen,

I LOVE your wonderful mother! She is such a stalwart, pillar of this site dedicated to offering encouragement and hope to others while she suffers herself. Will you please tell her that I am in her corner and holding her before the Father? Please let her know that we love her and are praying for wellness and healing.

[Gerri]

Thinking of you dear Shelia and adding my love and prayers to the others.

[mmoons]

Jen-

Thank you so much for letting us know. Please update us when you can.

Your mom, Jen, if just one of the most wonderful people! I know you know that. She has been such a kind friend to me.

Please report back to her that there are a bunch of serious prayer warriors out here that are funneling lots of prayers and loving, healing energy her way.

Maureen

[KristinSchwick]

Sheila & Jen,
May God look down upon you and hold you in his arms and send waves of healing power her way. She is such an amazing woman- please Lord let her heal so that she can continue to inspire us all down here on earth. Amen

[ammebarb]

Sending many prayers and the hope that Sheila knows that there is much, much love surrounding her.

[bejuce]

Adding my prayers to the list. Sheila has always been there for us and is a beautiful soul inspiring us at every moment. You will pull through as always!!!

[Jen]

I talked to Michael (Sheila's husband) today he said they are trying to keep her pain under control she is very nauseated from the pain meds. Hopefully the doctors can get this under control and get her well again!!

[tricia keegan]

Thank you for the update Jen and I continue to keep Sheila in my prayers and do hope they can make her more comfortable. x

[Jen]

Talked to Mom tonight on the phone she said they were going to switch her medication around tonight to manage her nausea better. I told her I posted a thread for her on here and told her many of you are lifting her up with your love, prayers and support. She is very thankful and greatful to all of you in her "Her2 Family" CUZ IT IS A FAMILY to quote my Mom. I was very sad to learn of hutchibk's passing I have not been able to bring myself to tell my Mom about it as she was a good friend of my Mothers. Mom hates to lose sisters to this disease. Please pray for a miracle Mom's neck nodes are progressing since she has been there her counts aren't good enough for chemo. She needs prayers for STRENGTH to get through this!!

[Mary Jo]

Thank you Jen for keeping us posted. You are such an wonderful, caring and loving daughter to your mom. She is blessed to have you as you are to have her.

I am praying and will continue too. I am so sorry you are all having to go through this.

Love and Peace,

Mary Jo

[Laurel]

Thank you for the update, Jen. Your mother is a wonderful person full of warmth and wisdom and courage. Prayers for healing coming her way.

[Jen]

Thanks Mary Jo. I found out last Friday that Jasmine broke the rod in her back AGAIN 6 months after her spinal fusion surgery which SHOULD have been the last one. :-/
I still NEED my Mom we ALL do. She needs strength to carry on her work HERE!!

[StephN]

Dear Jen -
So many of us are turning our prayers in Sheila's direction, that she is able to fight her way through her current set back.

She is a fabulous mother and knows all too well how very much her family needs her and vice versa.

Wish I could come and sit with her. I know if she can, she will make it!

P.S. Jen - so sorry to hear about Jasmine and her new trouble. She needs her grandma.

[Paty]

Dear Jen,

thank you for the update. My heart breaks knowing that your mom is going through a difficult time. i keep praying for her and for all the sisters in this group. Your mom is such an inspiration to me. i have had the chance to share time with her at the SABCS, wonderful lady. Please give her a hug on my behalf and tell her that I am praying for her. I love her and send her kisses and well wishes.

[chrisy]

Dear Jen,
Thanks for the update - and I also am sorry to hear of jasmine's latest setback. She is a real inspiration to her grandma, as Sheila is to all of us. I remember Christmas shopping with your mom in San Antonio for a Michael Jackson t shirt for Jas.

Sweet Sheila, old roomie and H2B, my prayers and thoughts are always with you as you know. Lifting you up in prayer right now. Know that you are wrapped in God's love as well as mine.

Cris

[Lori R]

Dear Jen,
Thank you for the update on your mom. I am glad you were able to let her know how much love and positive energy is coming from our merry band of warriors.

Your mom has always lead the charge for many of us and we are anxious to see her posts on the site once again.

Sending one more powerful hug to let her know how much she is loved.

[Pray]

Hi Jen, My heart goes out to you and your Mom! I would love to send Your mom a card! Should I send it to her home or hospital rm? If the hospital could you tell which one? I too love your Mom dearly and she has helped me also so much! I'm praying every day for her and your family, and wait for her posts again here.

Thank you,

Nancy

[Emelie B]

I too would love to send a card to our dear Sheila to lift her spirits and give her a tangible reminder how much she is loved and thought of.

Please let her know the multiple hugs she is getting all day long.
Emelie B

[Shobha]

Praying for you, Sheila! You are such an inspiration to me and your posts have always guided and helped me when I was confused and afraid of the future.

hugs,
shobha

[Jen]

I don't know the address or room # for her but if you would like to send the cards to my address I will make sure she gets them. My Address
ATTN: Sheila
%Jennifer Evans
705 S. Vermillion St.
Streator IL. 61364

[Pray]

Thank you Jen! It will be in the mail today!

[Joanne S]

Sending love, healing thoughts and many prayers. Love You Sheila!

[Paula O]

Daer Jen,

Please send our love to your Mom. How is she feeling today? Does she have a Caring Bridge site or similar for updates?

(((Hugs))),

Paula

[Jen]

Talked to Mom for a couple of minutes she sounds a little better they are going to be giving her blood because her count is low. She may get to go home in a day or 2. I pray that she can strong enough again to fight. I CAN'T lose her!!

[tricia keegan]

Praying hard, as I love your Mom to bits and I 'm so worried for her! Sheila will do it and come around again I'm sure! xxx

[Laurel]

We can't lose her either, Jen! Praying hard!

[chrisy]

I'm with Laurel on this.

I'm praying for your mom right now.

Love
Chris

[KsGal]

Sheila has always been such a source of strength for me. She has given me such great advice in her responses to my threads, and has always been such a great example to everyone who reads her posts. Im so sorry she is in so much pain. I send many prayers that she will be surrounded with God's love and divine protection. Please let her know we are all thinking of her..all the time.

[Pam P]

Sheila has been such an inspiration ever since I found this site. Prayers for pain relief and improvement in her counts to continue on with treatment.

[JillaryJill]

Jen,
Your Mom is special. I have never met her, but we have the same doctor. She is in good hands. I will pray for her...and you. Daughters need their mom's. Hugs to you!

[Catherine]

Dear Sheila,
May all of our prayers reach you and help get you through this hospital stay. May your platlets get stronger and may the pain subside. We love you and are praying for you to get better. You are such an inspiration and voice on our Her2 site. We are all behind you. The best to you and your family at this crummie time. I wonder if Tiptoe is out there and could come by for a visit.

With love, Catherine

[Patb]

This is Pat in Louisville and Tip has been with me
to the Derby and all summer with horses and blue-
grass. I will be glad to send Tip anywhere or take
him to Fl again where I got her from Suzane in May.

Has not been in any trouble and my dog Madi has
sometimes wanted to take over the care.
patb

[ElaineM]

Sheila is still in my thoughts and prayers.

[KsGal]

Prayers and positive energy....

Does anyone know if Sheila has been able to return home?

[Jen]

Talked to Mom yesterday afternoon she said she they were sending her home. Please continue to pray that there are more options out there and she can get strong enough to continue fighting. I can't lose my Mom.

[StephN]

Thank you for the good news that she can come home, where I am sure Sheila will get more and better rest than in a bustling hospital!

Nothing like your own bed, family, dogs and hubby to see to your needs in the peace of home.

[chrisy]

I agree, there is no place ike home and nobody like family...

[karen z]

All so true.
And we are all praying and sending healing thoughts.
K

[Jen]

I fear she is giving up. This KILLS me. I don't know what to do.

[Paula O]

Big hugs and prayers for all of you, Jen.

Paula

[StephN]

I am STILL keeping dear Sheila in my prayers.
She has been so strong for so long, fearlessly forging ahead with anything new that would knock back the beast.

Her body may have reached all it can take, much as I hope this is NOT true.

[Joanne S]

Huge Hugs Jen,
Although you don't know me, I know how you feel and my heart goes out to you. I know it is so very difficult for you right now to see Sheila like this and how helpless you feel. Her pain, pain meds and nausea have been rough on her body, and compounded by low counts, her body is weak. She is really tired now. All of this has knocked her down, but she has not given up. She needs a break for peaceful healing rest.
As you know, she is surrounded by great hope and love. We continue to have faith and pray for her pain relief so she does not suffer, as well as comfort, nutrients, and strength. Jen, try to be strong while you continue to be there with her and for her. It's important you take care. Please make sure to eat and get some rest. Let us know how you and Sheila are doing tomorrow. My heartfelt thoughts and prayers are with you tonight. Joanne XXX

[chrisy]

Dear Jen,
Your mom is such a special person, and along with everyone else, I pray for her continued strength. She has been through so much...a true lover of life driven by her love for you, Jasmine and the rest of her family.

I think Steph, as usual, has said it perfectly. Joanne too.

You say you don't know what to do; and how could you? When what you really want to do, probably, is make it all go away, somehow fix it. I think your job is easier, and harder, at the same time - to just love your mom back. take care of yourself. Stay strong. Breathe.

Remember, you and your mom are wrapped in our healing prayers and love.

Chris

[Jackie07]

Jen,

Please tell your Mom that we are thinking of her and remembering both of you in our prayers.

[Bill]

Hi Jen, please tell your Mom she's been in my thoughts and prayers. You too. Please try to take care of yourself, too, when you can. You need your strength so that you can be there for your Mom. Give her a hug for me, ok?

[KsGal]

More prayers and positive energy and hugs and love for Sheila. Im glad to hear she has been able to return home. Lets keep this prayer chain going and going...Being in the hospital is exhausting. Now that she is home, I hope she is able to be comfortable, rest and get some strength back.

[Mary Anne in TX]

Praying for and loving you both.

[Jen]

Talked to Mom tonight she sounded a little better she is resting at home. Nancy I received your card in the mail today. God bless you too and you're welcome I will get the card to her as soon as I can.

[karen z]

Jen,
Is there an address (yours/your mom's) that we can send cards to?
If so, please post and we will flood the mail.
K

[NEDenise]

Jen,
Sending love and prayers for you and your Mom. Sheila has a special place in my heart...she's a fighter, and I'm sure she'll do everything she can to stay strong, and heal. I hope all of our love and prayers is a comfort to her.
Denise

[Jen]

Karen Z my address is:
Attn: Sheila
%Jennifer Evans
705 S. Vermillion St
Streator IL 61364

[Jen]

Just want to say thank you to everyone who is sending their love, support, prayers, cards, hugs, etc.. to my Mother Sheila. Sheila as well as her family sincerely appreciates it.

[LoisLane]

Been away and just came back and checked boards. Sending love and prayers to dear Sheila. Sheila you are such a wonderful woman you have always been so caring and helpful to all of us on this board. As we have come on to this board when first diagnosed your words of wisdom and kindness have always given hope and strength to carry on. I am thinking of you. Lois

[karen z]

Jen, thanks for sending along this address. Why don't we all send cards and notes so that something or some things arrive each day? K

Karen Z my address is:
Attn: Sheila
%Jennifer Evans
705 S. Vermillion St
Streator IL 61364

[sassy]

Love, prayer and cards to Sheila!

[tricia keegan]

Jenn I've been offline for a few days but will send a card off tomorrow but from Ireland may take a few days but praying for your Mom and wishing her well. xx

[Jean]

Dear Jen,
Of course!!!
I met your wonderful Mother on a SABCS trip.
She is one special lady (but you know that already).
Payers of strength and healing are being done and some for you also.

Hugs,
jean

[Jen]

My heart really breaks tonight for my Mom, Sheila. I want her to get better but I can't stand to see her suffering. Please continue to keep her and her family in your prayers and pray for Jazzy too because she broke her rod and needs surgery~Thanks Jennifer

[Mary Jo]

I am praying Jen. I'm so sorry you are all going through such a difficult time. Having had cancer and losing loved ones to cancer, I do now how you feel. It's hard. Watching our loved ones suffer is the worst. I don't know what to say. Only that I will pray. Praying peace and comfort for you all. I'm sorry this is happening. My heart is sad and I just don't know what to say.

[Jen]

Jasmine said to me a couple days ago "I hope Grandma doesn't give up on me" it broke my heart. Jasmine has developmental delays and is handicapped she has known Grandma all her life and Grandma has been there with us thru surgeries and hospitalizations.... What am I suppose to tell her? She asked me today if it was her fault Grandma had cancer. I explained to her that it was no ones fault that Grandma has cancer. I just wish my Mom would get better and be the Mom I have knew.... Sorry I just had to vent a little.... This is really hitting me hard and I know you guys will understand as my Mom Sheila would understand as she lost her own Mother to cancer a couple years ago almost.

[Mary Jo]

Dear Jen,

I understand oh so well. We need to vent....we need to say, "it's not fair"...."why her"...."I want life as I know it back"...and many other things that go through our minds.

Know that I care and know that my prayers are with you.

Mary Jo

[Jen]

I feel bad for venting as I don't have cancer but I would trade places with Mom if it would save her..

[NEDenise]

Jen,
Please don't apologize for venting. We all understand the pressure you are under.

You may not have cancer, that's true...but you're having to stand by and watch cancer drag your mom down, helpless to stop it. I lived that with my own mom a few years ago...and it's every bit as hard as having cancer yourself...believe me.

I hope all the love and prayers we're sending to you and to Sheila are a comfort. And, of course...I'm praying for Jazzy too.
Denise

[Jen]

I just got a text from Sheila's sister Sheila's husband and father had to take her to the hospital because she was short of breath and needs oxygen. Please continue to keep her in your prayers.

[lkc Gumby]

Hi Jen, I am sorry honey for the pain you and your Mom and family are going through. Your Mom is a special person and I know first hand how hard it is to watch mommy in pain. ( I lost my mom to BC, and she lost her mom and only sister to BC)
I am praying for you all.

[radiant]

Wow Jen -

We r SO sorry to hear of your moms situation.
Cancer robs it all from us and others around
us.

Hugs,

Kim

[Andrea Barnett Budin]

Dear Sheila, Just want you to know I haven't stopped streaming a multitude of loving, healing energy to you!!! May all that you have given for all these many years be returned to you -- 100-fold...

My love to you too Jen, as what you are going through has to be so very hard. Your Mom is such a special Spirit. I know she is trying her best to stay positive which is truly a challenge when in pain and feeling overwhelmed with all that she has been going through. It can overtake you, if you aren't on guard. May she soon find her footing again. Really really really soon!

Still, if anyone can do it -- I believe in Sheila! Warrior Woman extraodinaire. A shining Light in our lives, and in your family's life I have no doubt!

I am always so touched by and proud of Sheila's grace and tenacity. You just can't keep that Woman down!

Stay strong Sheila, please. I am deeply sorry you have to go through all this. It's too much. Hard to keep your chin up. So, I pray for your strength and resolve to persevere, anyway. Cause that is who you truly are.

Please stay focused on healing, darling Lady! Not so simple to reject all other thoughts as they are in your face and in your head, but that is what you must do my Sister.

With Love and Light, and a giant hug,
Andi

[chrisy]

Dang. I wish I was eloquent like Andi...

Sheila and Jen, lve to both of you...

[Laurel]

Jen,

Please know we do understand your fears, fatigue, and frustration having to sit ideally by while your mother is in the battle of her life. The helplessness of it all is overwhelming, and fear is exhausting. I met your mother 2 years ago. She is an amazing women, vulnerable and honest about matters. I found her so refreshing and counted myself in awe of her. I imagine you have inherited a few of those fine qualities. You sound brave and selfless like your mom. Sending love and prayers to both of you.

[Midwest Alice]

Sending prayers Shelia

[karen z]

Andi said it all and very well. Thanks Andi for expressing all of our thoughts so beautifully.

Love, the best thoughts, prayers, and cards are coming your way Sheila.

[v-ness]

dear sheila - you barely know me, if you know me at all, but i have seen and read many a post of yours here over the years. i am so sorry to hear that you are admitted to the hospital and i am proud of your daughter for calling upon the her2support group to lend you their love & support. that can only feel deeply, richly good amid all the troubles you are experiencing. you are very well loved here and highly respected. people would come out of the woodwork to do anything for you. that shows how special you are, and i hope you gather your strength and the doctors do some magic and heal you. yours, valerie

[Kim in CA]

Shiela,

Sending my most heartfelt prayers and lots of love your way. You are very special to all of us.

[DonnaD]

Dear Jen,
Your Mom is so important to us all. We understand how hard this is for you and your whole family.

I can't believe all this has happened. Just a little over two weeks ago we (Sheila, Michael, Loren and I) met in Ottawa at one of her old haunts for pizza. We had a great time chatting and laughing.

Many prayers are coming your way. Please tell your Mom we love her!
Donna
The flowers in my photo were from Sheila, celebrating my Cancerversary

[Ceesun]

Keeping Sheila in my heart and prayers. Ceesun

[Jen]

Thank you everyone for your continued love and support. It is very hard to see my Mom like this. I think she will be going home from the hospital today they kept her there overnight until they can get oxygen delivered to her home.

[Andrea Barnett Budin]

Dear Jen,

You are an angel for keeping us all posted. Do not hesitate to vent on this site. We are Sheila's sisters. You too are family. Where would any of us be without our caretakers and biggest supporters -- on the front lines?!

We all understand that when one member of a family is stricken, the whole family suffers. It is so painful to watch someone you love dearly fight for their lives and struggle doing so! It is the hardest thing in the world.

Even as I watched my Mother deteriorate with Alzheimers (not cancer) I was heartbroken. We feel so helpless in certain situations and all we can do is advocate for our loved one and be there for them, with all our hearts.

Jen, you are welcome here any time so vent away. Our hearts are with you. We are grateful for your posts, for the information and for the feelings. Wish I could do better than a cyber hug but that you have. I am holding you tight, cheek to cheek.


Andi

[Jen]

Just talked to my Aunt (Sheila's sister) She will be coming home today when they get oxygen delivered and she is signing up for hospice care. Continue to keep Sheila in your prayers.

[jml]

Oh Sweet Sheila~
You are my sister in this Stage IV Decade-long odyssey and I'm heartbroken over how much you are enduring now.
As has been so eloquently said by our sisters here, we are lifting you up in prayer and comfort, honoring and celebrating your incredible friendship and support you've given us over the years.
Rest easy, my friend, and know how much we are all here praying to ease your burden.
Keep the Faith~

Jessica

ps- Hang in there Jen. I know the burden must be unbearable, but lean on us here. We're here to pray for you and Jas too.
God bless~

[Laurel]

Dear Sheila,

All I can say is that I love you. I am praying.

Laurel

[Pray]

Dearest Sheila, I too love you so! I'm hoping and praying they are able to keep you comfortable. Just wanted to let you know what a wonderful daughter you have in Jen. What a kind loving woman she is we appreciate her so. I'm sure you couldn't be more proud of a daughter than you are of Jen. My heart is breaking for you and your family. You are so well loved. May the peace of the Lord be with you always

[Emelie B]

Hello Jen,
I wanted to chime in here and tell you about my experience with hospice since June of this year. Everyone that I have encountered has been wonderful to me. Very supportive and on top of everything I need to stay comfortable. I have been on continous oxygen since the beginning of Sept. and morphine has been the drug that allows me to live a pretty normal life. I also take dexamethasone for the inflammation in my lungs from the cancer. There are other med's that I take on a daily basis, but I don't think I should post them here. If you want to know more about that, please email me or private message me. I would be glad to share.

As for how I am doing, I am good. I can tell it is progressing because of the lack of oxygen and the fatigue, but we are managing to tile the master bath and have dinner with friends. Pretty good for me. I have to really pace myself and know when to rest and when to go for it.

My nurse visits me once a week to review my meds and make sure I am NOT in any pain and that I am doing well. She also checks in with me at least twice a week just to say "hi". I feel like I am getting better care now than I ever did in regular treatment.

I hope you got my card and passed it on to your Mom, and that you will contact me with any questions you have. We are all here for you Jen, no matter what.

Take care and love to your Mom you are all in my prayers,
Emelie B

[Mary Anne in TX]

God bless you Sheila, Jen and all your family. And God bless and grant peace to all of us here who love those in pain and transition. May we each find a way to cope with what we do not want. I realize more each year that no others can understand as this band of warriors do the journey taken. Luv to each and all.

[Andrea Barnett Budin]

Mary Anne, your post was so well stated! Those of us who love someone "in pain and transition" must indeed find a way to deal with unwanted realities. How true that simple idea is! And how towering a goal to reach for!!

I know hospices across this country do the most amazing job at this delicate time. They are angels with a special wisdom that most of us just can't begin to fathom. For the patient, and for the family standing by.

Jen, keep talking to your Mom. Tell her how much she is loved, by so many, and especially by you. (As a Mom, I surely know that there is nothing sweeter than my daughter's lovingkindness to me.)

We all have seen how you adore her, and that is an understatement. I feel certain as well that your Mom treasures you and is beyond proud of how strong you are. The apple doesn't fall far from the tree... Good for you, Jen. You are a role model for others in your family. Never forget that. It is that very concept that kept me going strong throughout my personal battles.

We all send you and your family our support and loving admiration, which will never falter. I am trying, as Mary Anne says, to cope with this most unwanted news about Sheila. Her resolve is such a beautiful thing we've all seen demonstrated over the last decade -- time and time again. Positively remarkable how resilient Sheila has shown us all one can be! The might of the human Spirit is awesome!.

Surely her Spirit is willing, in fact eager, to go on. Her body just isn't cooperating. I pray she will continue to talk to her body (and yes I mean that literally) cause I do believe it's the body's job is to follow the commands of the mind.

I am sending much love,

Andi

[Becky]

Please tell Sheila again how much I love her. We spent many years as roommates at the San Antonio BC Symposium. Very happy times talking about everything. I consider Sheila one of the best people I know. For many years in a row, we roomed, shopped, did booth duty, saw presentations, ate and drank chocolate martinis together. She is courageous and strong. She loves you and your sister and brother. Her sister, father and husband. She is a true and loyal friend and loves everyone on this board and we love her. Her heart has always belonged to Jasmine and she told me once she got her strength and courage from her - her struggles, fought and overcome one by one.

I am praying and thinking about Sheila continuously.

[Jen]

My sister, brother and I will all be going to see Mom tonight as she requested. She is slipping away she isn't the Sheila we knew. As much as it hurts to lose her to this terrible disease that robbed her of who she was before it kills her it hurts MORE to see her in pain and suffering. I have received cards in the mail from: Hillsgrove, PA., Farmington Mi., Ketchikan, AK., Denver, Colorado. I will be bringing them with me to give to her. Thank you all for your loving support. My Mom loved each an every person she met thru BC. Mom said that getting BC was a blessing because it made her appreciate each and every day she had that much more.

[Pray]

Your family will be in our prayers tonight. Gods blessings are all around you.

[Ellie F]

Jen
Here in England I am praying for your mum.she is a heroine of the first order, full of love for her family and so supportive of others facing this disease.
We are all holding her close
Ellie

[Mary Jo]

Just read that Sheila is entering hospice. I have tears and truly do not know what to say. Everyone else has said it all so well. I can say that Sheila was a friend I could count on for support and help when I needed it. She purchased her Harley the same place me hubby purchased his....we had fun chatting about that. With tears I pray God's most wonderful Peace to be with Sheila and her family and friends. Life is too short....as Sheila has so courageously taught us, - live each day to the fullest.

[Barbara H.]

Hi Jen,
The news of your mom has just stunned me. Although I have never formally met her, I always thought of her has a guide and a friend. She was so helpful to me when I was trying to get approval for Tykerb and Herceptin. She wrote numerous emails of advice and also called and spoke to my husband. We are both upset about this latest news.

I am still teaching and therefore have not been able to make to the conferences. I wish I could have met her. Your mom is truly a hero. My heart goes out to you. I know this is not easy.

Thinking of you,
Barbara H.

[sassy]

My thoughts and prayers are with Sheila and all of her family and friends. Sheila has always been a source of strength for many of us here.

May God hold you in the palm of His hand.

[SoCalGal]

Hi Jen,
My heart goes out to you and your family...I so admire your mom, she has given me so much these past 5 years. Sending prayers and much love to you all.
Flori

[SoCalGal]

Aside to Emilie, thank you for sharing so openly your own experience in hospice care. I just read your signature, and see the last item written is planning your own memorial. I sense a great deal of peace and acceptance from your words...this cannot be an easy time for you or your family either. Wishing for miracles for all of us...Flori

[chicagoetc]

Jen and others... Same here. She is a hero. Melanie

[rhondalea]

Dear Jen,

I am so sorry. I have not known your mother well in my time here, but her fortitude and courage have been an inspiration to me. And you are an inspiration to daughters everywhere. I will continue to think of you both every day.

Rhonda

[NEDenise]

Sending love to Sheila, and a gentle hug.
Prayers heading out too that God will give her peace, and relief from her pain.
Love you Sheila
Denise

[alicem]

Jen,

My heart goes out to you and your family. I cannot begin to tell you what your mother means to me. I love her like a sister, and am so glad that we were able to meet at SABCS in 2009.

When I first came to this forum she was so welcoming, not just to me, but to every newcomer. Over and over again there would be a new post from someone saying they were frightened and scared of the unknown. Sheila would be there to give words of wisdom and reassurance. How I love that about her.

Sheila has been so strong throughout her walk through cancer world. She has left no stone unturned and has done everything she possibly could to kick its butt. What grieves me so for both her and for Brenda, is that Herceptin was not available for early stage cancer when they were diagnosed. I know I shouldn't play the game of "what if", but I can't help it... and I cry because of it. Oh how I have cried.

Her love for you and for her granddaughter has touched me so. A song from the end of Les Miserables keeps coming to mind right now. Jean Valjean is dying, and his daughter Cosette is telling him "Papa, you're going to live...", he responds "Oh, Cosette...forbid me now to die. I'll obey, I will try...". Jen, I know that your mom would do anything in the world for you - if she could.

It is hard to be in this position. I was in your place in 1999 and remember not knowing what to pray for, Mom was suffering and had no quality of life. I did not want to pray for her to die, nor did I want to pray for her to live if it meant continued pain - just because I didn't want to lose her. My Pastor gave me great advice. He told me to pray for that peace which passes all understanding which only God can give. That's what I did and it got me through one of the most difficult times in my life. So, that is what I pray for you and for Sheila and for all of your family and loved ones. I pray that Sheila has no more pain, she has endured enough.

Please give her a hug and a kiss from me. I will miss Sheila's presence on this board and on Facebook. Please check in here from time to time to let us know how you and Jasmine are doing. When we lose a sister, it makes it a little easier to know that their family is doing okay.

With a very heavy heart I send my love,

Alice

[Ceesun]

Jen, Please know I love Sheila, too, she has always been so kind and supportive. I pray she is at peace and I pray for a miracle....I hope. Ceesun

[chrisy]

Sheila as been such a support and special friend to me over the years. We also spent much time together at SABCs -shopping, eating, laughing and crying, and fighting over having enough kleenex in the room when we were both on avastin! Sheila, Brenda and I were very close, and we appreciated having a private space where we could share anything - good or bad. And always with some humor. I don't know if you know this, but a year ago her doctor tried to have the hospice talk with your mom. Sheila old her in no uncertain terms "you don't understand, I am a member of an elite group the h2b's (her2 bitches) and we don't give up easily". Took her doctor aback a bit, but Sheila did not give up, and kept at it for another year.
I am incredibly sad that Sheila's body is not as strong as her spirit, but then how COULD it be? But grateful to have been able to bask her light and draw strength from her humor and spirit.

I love you Sheila, but you already know that!

[Redwolf8812]

I'm having such a hard time knowing what to say. Sheila means so much to me. Praying for her and her family, and doctors and care-givers.

- Penny

[laureen]

I too will pray for peace. Sheila has been there so many times for me, as she has for so many others too. My heart is hurting for you and the family. Thank you so much for the updates that are so honest and courageous.sending love , prayers and peace.

[Paty]

I keep praying for Sheila, she is an incredible lady. I had the chance to meet her at the SABCS during two consecutive years, what a great gift meeting such an amazing warrior.
I ecco the words of my friends in this board, Sheila is just amazing!

Chrisy, loved the H2b comment.

A hug for Sheila, her family and my sisters in this board.

Paty

[karen z]

Chrisy,
Wonderful post and so true (and I can JUST see Sheila delivering that line to her doc). I was very lucky to have met Sheila in San Antonio- very tough and very sweet woman.
Love you Sheila. Jen, your mom is the best and you are too.
K

[michka]

Dear Jen
I never met Sheila but she means so much for me. She was on my side right from the first day when I joined this board. And she always was for over 5 years. I admired the way she went through years of taxol and so many other treatments. I was sure that one day I would meet her. I still see her picture from 5 years ago. I cannot stand the idea she is suffering. I am mad her body is giving up. What a fighter. I feel very very small when I think of your mother's courage and kindness. I love her. Michka

[KDR]

Sheila is the stamp of tenacity, perserverance, and regeneration. She has truly been an inspiration to many and I sincerely wish her peace at this time of transition.
Warmly,
Karen

[LoisLane]

Beautifully said Kare. As I read these posts it is amazing how we all feel that Shiela was our welcoming beacon as we all arrived on these boards at different times. My heart is very full as I read all the posts from all the people here. It has been an extremely difficult past few months on here. It certainly does feel like a family. Most of us have never met but we feel we know each other through the marvelous, funny, witty and sad posts. Thinking of all at this time. Lois

[tricia keegan]

Dear Jenn, I've been offline for a week and so sad to see this, your Mom and I were close and she told me of her Irish roots! I feel for you all and prayers to Sheila right now! xxx

[Mtngrl]

Dear Jen and Sheila,

I'm joining this conversation late, and so sorry I didn't know earlier. I, too, have been blessed by Sheila's beautiful, strong, loving spirit. I never met her in person, but I so admire her tenacity and grace.

It is terrible to think of going on without her. I am so sad for you and your daughter and the rest of your family.

I pray for peace, love, light and hope for you, Sheila, Jasmine and all of us.

[Jen]

Mom isn't giving up but there isn't anything that can be done right now because of her blood counts she can't get the chemo. Thanks everyone for your continued love and support for my wonderful Mother.

[chrisy]

Jen,
Just have to say, again, how much I love your mom and am praying for her as well as your family. She is one wicked warrior woman, I always picture her in her pirate skull and crossbones scarf! Give her a big hug for me.

Love, Chris

[StephN]

Oh, Chrisy, I forgot about that one. She is our fashion plate here, with her matching lymphedema sleeves for every outfit, and snazzy headgear.

So, now let's all do our best Pirate Impression.

Lots of loving energy directed to Sheila and her wonderful family.

[ElaineM]

Love, hugs and prayers for Sheila going her way from the middle of the Pacific.
Hugs to Jen and the rest of Sheila's family during this stressful time.

[Soccermom]

Sending strength and prayers to Our Sheila and her family.
Marcia

[Joanne S]

You are in my thoughts Sheila. Praying for your peace and comfort, and a healing miracle for you!
Hugs and love to you and your family!
<3 & +
Joanne

[michka]

I keep hoping.
Come on blood counts, please please raise!

[Marlys]

I had a stroke on September29, and this is the first time I have had a chance to check up on everyone. I am praying for you and I know that works because it has for me. I love you!!
Love & Hugs,
Marlys

[Jen]

https://www.facebook.com/mobileprotection#!/groups/460503277326617/?fref=ts

This was started for Sheila on Facebook. If you want to add me on FB my email address is shorty.61364@gmail.com you can find my FB page thru my email I can add you to this group.

[Mandamoo]

I've just asked to be added - amanda

[chrisy]

I think I just requested to be added..but I'm pretty facebook challenged

[StephN]

I clicked the Join Group button at the top right.
guess I will get an email of acceptance? Have never done this before.

[prolifejoan]

I am new to this forum, but I am praying for Sheila.

[tricia keegan]

Like Steph I think I just requested to be added!

[Mary Jo]

I, too, requested to be added. I went to the FB page and clicked on send request.

Thank you.

[Jen]

I saw your request an added you StephN I haven't seen any other requests but if I do I will add you. I didn't create this FB page but thought it was a good idea to post it HERE.

[alicem]

I sent a request too Jen.

[Pray]

Jen I pm you. Please help. Your friend, Nancy

Joan where did you get that beautiful baby? I want one too!

[rhondalea]

I'm also waiting to be approved.

[Mary Anne in TX]

me too, Jen.

[Jen]

I haven't seen any new requests last time I checked. I will add all requests as I see them.

[Mandamoo]

Hi Jen - sometimes the requests are a little difficult to find especially if you are using FB on a mobile device or iPad - you need to go to the member section and if you are n administrator it should show all of the requests. I just checked the page and it says my request is still pending. :-)

[Jade]

For those of us not on Facebook, could someone keep us in the loop? Thanks kindly...

[Jen]

I am not an administrator of the group. I have invited people from my FB list that is the only way I know how to do it. A few times I saw requests on the page to be added so I added them. I don't have any new news to report about Mom. I am however very disappointed in her Dr for not doing SOMETHING, ANYTHING. (To my knowledge) Mom's cancer isn't in her internal organs. I read signatures of members on here whose cancer HAS spread to brain, liver, etc.. who are STILL in tx. Why haven't YOUR doctors given up on you like it seems to me Mom's Dr has obviously given up on her. I hope I NEVER meet this doctor I wish the Dr Mom had before wasn't retired she at least seemed to want to SAVE my Mom.

[caya]

Jen, I am so sorry that you and your family are going through this with your dear Mom.

Is there another oncologist on the team, or board, that you could please your Mom's case to?

all the best
caya

[Lani]

Why can't your mom switch Doctors?

Even if she placed herself in hospice, one is always allowed to change one's mind.

Has your mother been disheartened? It may be an effect of medication.
Is she now being overmedicated? Is she "herself"?

Some (very few) here have relatively "happily" given up. Sheila always struck me as a fighter except when faced with the decision as to whether/how to radiate her brachial plexus, when I felt she didn't explore her options as vigorously as I felt she should have (but who am I to have an opinion, really!)
Since I am not qualified to give advice I never expressed mine regarding that choice, but kept posting more literature to review/ questions to raise

I wish her and you the best. Let us know if there is anything any of us can do eg. recommend another oncologist close to you, give info re getting into/out of hospice, etc

[rhondalea]

There seems to be one administrator for the group. Unfortunately, she has made herself impossible to contact (you can subscribe to her personal page but it's not possible to write on her page or send her a message unless you're already a friend). I suspect that she is seeing many requests from people she doesn't know, and she's ignoring them (and with all the "fake" people on FB, this is a smart choice).

I'm sure that an existing group member is able to contact the administrator, so if Jen or someone who has already been added contacts her and lets her know about this thread, it might help speed approvals for those of us who have sent a request.

[Jen]

If you would like to give me your FB names in PM I can contact the administrator for you to get you in the group.

[Jen]

Here is the message I sent to the person who created the page..

Hi Rena I know there are gals from a website called her2support.org that my Mother Sheila has belonged to for many years that would like to be added to your FB page prayers for Sheila they aren't on my FB list so I am unable to invite/and or add them to the group. I know many of them have found your page Prayers for Sheila Rawlins on FB and are waiting to be added. I don't see the requests to be added so I thought since you started the page maybe you could add them also.

Thanks
Sincerely,
Jennifer

[rhondalea]

No need to clog your inbox. If my stalkers are looking for me, they'll find me no matter what I do. ;)

Rhonda Lea Kirk Fries

[Jackie07]

I've only got 102 'friends' on my FB - several of them are friend's friends whom I'd known nothing about... But I don't have any of my Her2support group members on my friend's list.

It's kind of nice to have my 'social' life [limited friends allow me to write more 'personally'] and my 'support group' life separated. I'd prefer to read the updates on Sheila here. Sheila's friend is entitled to her own privacy setting and 'friends' choice. She doesn't need to 'invite' bunch strangers even if we consider ourselves Sheila's 'sisters'.

Just my 2 cents.

[rhondalea]

It's a group. You add the group, not a ton of people. You can also adjust your settings so that you receive no notifications and so group news stays out of your feed. (In other words, you can read group news only on the group's page, if that's what you want.)

This is FB's answer to message forums. For some purposes (like this one), it's probably superior to standard message board format. For others, not so much.

[Laurel]

You know, Jen, sometimes it seems those who have fought the good fight for a protracted period of time come to a point of resignation (?), acceptance(?), weariness(?). I am not certain about this, but I believe there comes a fatigue with the whole treatment rat race. Your mom is one heck of a fighter. This cannot be disputed. However, it seems that with humans as well as animals there is an innate sense of when the need to rest and be at peace has arrived. Perhaps your mother is there now. Maybe she instinctively knows her physician has suggested a fair and wise choice?

Like Lani, I want to shout across the miles begging your mom to battle on. It was all I could do not to shriek for Brenda Hutchinson's family to keep on fighting with her....NO! Not hospice! Not for Brenda! Wake up, Brenda, wake up! But they knew it was time to let go. The race was run.

It is the letting go that is so hard for us. Selfishly we want them to stay HERE, right here with us....forever, but we know there are no forevers in this life. I do believe there is another life that is eternal. You'll see you mother again in that life.

It is brave of you to help your mom walk out this last walk. I can tell you it is a terribly difficult thing to do. I know you will rise to the occasion and manage it all beautifully.

[Lani]

My comments came not from a personal knowledge of Sheila...I had none.. but from your exasperation which I assumed was shared with your mom at her new
doctor not making any suggestions.

Many Stage IVs offer themselves as trial participants in Stage I trials which have virtually no hope of helping them...feeling by doing so they are at least helping the next person to come along. When there are clear reasons and evidence for the drug to be particularly effective, sometimes it proves effective and provides additional quality time.

If your mom was up to it AND WANTED TO ie, is not resigned to giving up/in , and if it were available, I found the following(just published by the Journal of the NCI) There is every evidence that the same dosage which is tolerated well and given to thousands if not millions daily around the world may prove effective :


Selective inhibition of Her2-Positive Breast cancer cells by the HiV Protease inhibitor Nelfinavir
Joong Sup Shim, Rajini Rao, Kristin Beebe, Len Neckers, Inkyu Han, Rita Nahta, Jun O. Liu
Manuscript received July 22, 2011; revised August 8, 2012; accepted August 16, 2012.
Correspondence to: Jun O. Liu, PhD, Department of Pharmacology and Molecular Sciences, Johns Hopkins School of Medicine, 725 N Wolfe St, Hunterian Building 516, Baltimore, MD 21205 (e-mail: joliu@jhu.edu).
Background Human epidermal growth factor receptor 2 (HER2)–positive breast cancer is highly aggressive and has higher risk of recurrence than HER2-negative cancer. With few treatment options available, new drug targets specific for HER2-positive breast cancer are needed.
Methods We conducted a pharmacological profiling of seven genotypically distinct breast cancer cell lines using a subset of inhibitors of breast cancer cells from a screen of the Johns Hopkins Drug Library.To identify molecular targets of nelfinavir, identified in the screen as a selective inhibitor of HER2-positive cells, we conducted a genome-wide screen of a haploinsufficiency yeast mutant collection. We evaluated antitumor activity of nelfinavir with xeno- grafts in athymic nude mouse models (n = 4–6 per group) of human breast cancer and repeated mixed-effects regression analysis. All statistical tests were two-sided.
Results Pharmacological profiling showed that nelfinavir, an anti-HIV drug, selectively inhibited the growth of HER2- positive breast cancer cells in vitro. A genome-wide screening of haploinsufficiency yeast mutants revealed that nelfinavir inhibited heat shock protein 90 (HSP90) function. Further characterization using proteolytic footprinting experiments indicated that nelfinavir inhibited HSP90 in breast cancer cells through a novel mechanism. In vivo, nelfinavir selectively inhibited the growth of HER2-positive breast cancer cells (tumor volume index of HCC1954 cells on day 29, vehicle vs nelfinavir, mean = 14.42 vs 5.16, difference = 9.25, 95% confidence interval [CI] = 5.93 to 12.56, P < .001; tumor volume index of BT474 cells on day 26, vehicle vs nelfinavir, mean = 2.21 vs 0.90, dif- ference = 1.31, 95% CI = 0.83 to 1.78, P < .001). Moreover, nelfinavir inhibited the growth of trastuzumab- and/or lapatinib-resistant, HER2-positive breast cancer cells in vitro at clinically achievable concentrations.
Conclusion Nelfinavir was found to be a new class of HSP90 inhibitor and can be brought to HER2-breast cancer treatment trials with the same dosage regimen as that used among HIV patients.
J Natl Cancer Inst 2012;104:1576–1590

Nelfinavir is a first-generation hIV protease inhibitor approved by the uS Food and Drug Administration for an oral dose regimin of 750mg three times daily for AIDS patients. however, it was modified to a regimen of 1250mg twice daily, as recommended
1588 Articles | JNCI
Vol. 104, Issue 20 | October 17, 2012
Downloaded from http://jnci.oxfordjournals.org/ at Periodicals Department/Lane Library on November 4, 2012
by uS Food and Drug Administration in 1999. the efficacy of nelfinavir was proven to be equal in both regimens in a large, ran- domized trial (46). extensive pharmacokinetics studies have shown that nelfinavir has an average peak plasma level of 8–10 μm, which is approximately twice as high as its IC50 for the her2-positive breast cancer cell proliferation (3–6 μm), suggesting that it may be effective in breast cancer patients with the current dosage regimen. With a relatively low toxicity profile and much available informa- tion on its drug–drug interactions and on pharmacokinetics, nelfi- navir is ready for clinical testing in her2 breast cancer patients. In conclusion, the discovery of her2 selective inhibition of breast cancer cells by nelfinavir and the elucidation of its unique mode of action through binding to a new site on hSP90 have important implications in the development of nelfinavir and its analogs as new anticancer agents.

I do not know Sheila but I appreciate her decision to end active treatment and understand it IF INDEED it was made despite being depressed by her new physicians' approach and with knowledge and understanding of whether or not other meaningful options remained.

I provide the following reference to a recent op ed in the NYT on a different but related matter for you to consider. Pass any/all or none of this on to Sheila as you see fit.


NEXT week, voters in Massachusetts will decide whether to adopt an assisted-suicide law. As a good pro-choice liberal, I ought to support the effort. But as a lifelong disabled person, I cannot.




There are solid arguments in favor. No one will be coerced into taking a poison pill, supporters insist. The “right to die” will apply only to those with six months to live or less. Doctors will take into account the possibility of depression. There is no slippery slope.

Fair enough, but I remain skeptical. There’s been scant evidence of abuse so far in Oregon, Washington and Montana, the three states where physician-assisted death is already legal, but abuse — whether spousal, child or elder — is notoriously underreported, and evidence is difficult to come by. What’s more, Massachusetts registered nearly 20,000 cases of elder abuse in 2010 alone.

My problem, ultimately, is this: I’ve lived so close to death for so long that I know how thin and porous the border between coercion and free choice is, how easy it is for someone to inadvertently influence you to feel devalued and hopeless — to pressure you ever so slightly but decidedly into being “reasonable,” to unburdening others, to “letting go.”

Perhaps, as advocates contend, you can’t understand why anyone would push for assisted-suicide legislation until you’ve seen a loved one suffer. But you also can’t truly conceive of the many subtle forces — invariably well meaning, kindhearted, even gentle, yet as persuasive as a tsunami — that emerge when your physical autonomy is hopelessly compromised.

I was born with a congenital neuromuscular weakness called spinal muscular atrophy. I’ve never walked or stood or had much use of my hands. Roughly half the babies who exhibit symptoms as I did don’t live past age 2. Not only did I survive, but the progression of my disease slowed dramatically when I was about 6 years old, astounding doctors. Today, at nearly 50, I’m a husband, father, journalist and author.

Yet I’m more fragile now than I was in infancy. No longer able to hold a pencil, I’m writing this with a voice-controlled computer. Every swallow of food, sometimes every breath, can become a battle. And a few years ago, when a surgical blunder put me into a coma from septic shock, the doctors seriously questioned whether it was worth trying to extend my life. My existence seemed pretty tenuous anyway, they figured. They didn’t know about my family, my career, my aspirations.

Fortunately, they asked my wife, who knows exactly how I feel. She convinced them to proceed “full code,” as she’s learned to say, to keep me alive using any and all means necessary.

From this I learned how easy it is to be perceived as someone whose quality of life is untenable, even or perhaps especially by doctors. Indeed, I hear it from them all the time — “How have you survived so long? Wow, you must put up with a lot!” — even during routine office visits, when all I’ve asked for is an antibiotic for a sinus infection. Strangers don’t treat me this way, but doctors feel entitled to render judgments and voice their opinions. To them, I suppose, I must represent a failure of their profession, which is shortsighted. I am more than my diagnosis and my prognosis.

This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.

And in a sense, it is rational, given the dearth of alternatives. If nobody wants you at the party, why should you stay? Advocates of Death With Dignity laws who say that patients themselves should decide whether to live or die are fantasizing. Who chooses suicide in a vacuum? We are inexorably affected by our immediate environment. The deck is stacked.

Yes, that may sound paranoid. After all, the Massachusetts proposal calls for the lethal dose to be “self-administered,” which it defines as the “patient’s act of ingesting.” You might wonder how that would apply to those who can’t feed themselves — people like me. But as I understand the legislation, there is nothing to prevent the patient from designating just about anyone to feed them the poison pill. Indeed, there is no requirement for oversight of the ingestion at all; no one has to witness how and when the lethal drug is given. Which, to my mind, leaves even more room for abuse.

To be sure, there are noble intentions behind the “assisted death” proposals, but I can’t help wondering why we’re in such a hurry to ensure the right to die before we’ve done all we can to ensure that those of us with severe, untreatable, life-threatening conditions are given the same open-hearted welcome, the same open-minded respect and the same open-ended opportunities due everyone else.

Ben Mattlin is a freelance journalist and the author of “Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.”

A version of this op-ed appeared in print on November 1, 2012, on page A31 of the New York edition with the headline: Suicide by Choice? Not So Fast.

[rhondalea]

My understanding was that Sheila wants treatment but is unable to have treatment because of her low platelet count.

Is she being treated for the low platelets, Jen?

[Jen]

Thanks Lani for the info. Rhondalea no she isn't and evidentally they check your counts when you are in hospice.

[Nancy L]

Lani,

Can any oncologist administer this drug off label or does it have to under a clinical trial? My current experience with the T-DM1 trial shows me clinical trials are not set up to make it easy for the patient. Thank you for the discussion about assisted suicide--very emotional piece.

[Lani]

As I understand it, any drug approved by the FDA for one purpose can be prescribed by any licensed Dr, At least one whose federal prescribing licensure allows him to prescribe, that drug for any other purpose "off-label"

That does not force insurance companies to pay for the drug, however.

[ElaineM]

I am still keeping my fingers crossed for Sheila and hoping she will get the help she needs soon.

[rhondalea]

Jen, I cancelled my request to be added to the group. I'm guessing that the admin prefers to add only those she knows. Her personal page does not offer any way to contact her, and there's no way to send a personal message from the page she has set up for your mom.

I will continue to hope that your mom's platelets multiply like bunnies and that she is comfortable. I also hope that you will keep us posted about how she is doing.

Rhonda

[Pray]

Lani, Outstanding! I am in awe! What an amazing life you are living. I believe in every word you have written. Your wealth of knowledge here and on Life, such powerful stuff. I have seen these situations played out in life, and I have been blown away.
When a mother in her early sixties son can not watch her with her cancer and gives up on her and she is fighting so hard. She is unable to speak but has the ability to write and she surrenders because she knows her son is uncomfortable with her situation and is (as he says) unable to visit her any longer. She went so quickly. To take our God given right to fight and hope for as long as We see fit. Then have someone make it theirs. I just don't get it.

Gods blessings to you Lani. Thank you so much for your truely heart felt message.

You are so appreciated for all you do and all your are! Priceless.

Peace my friend,

[Jen]

Rhondalea I sent you a message and added you on my Facebook.

[rhondalea]

Added back and replied to your message. (I love your timeline.) Thank you so much.

[Jen]

You are very welcome Rhonda please feel free to share my posts and pics on my FB timeline. It's always great to be in the company of like minded individuals. ;)

[Jen]

Today Mom wants all of her children to help her plan her funeral mass. I am very sad to have to report I don't think it will be long until Sheila earns her wings and can fly forever NED....

[caya]

Jen, I am sending prayers and love from Canada.
Your dear mother Sheila has been a shining inspiration to me since I joined this site...

all the best
caya

[Becky]

Please tell Sheila I love her again

[Jeanette]

So many passing too soon. Shiela was an inspiration to many of us. Many God hold you in the palm of his hand, Blessings , jeanette

[SoCalGal]

"Today Mom wants all of her children to help her plan her funeral mass. I am very sad to have to report I don't think it will be long until Sheila earns her wings and can fly forever NED...."

Oh gosh, Jen. I cannot imagine the strength it must take to go through this with your mom.

As Elenor Roosevelt said, We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face...we must do that which we think we cannot.

That sums up everything about the cancer experience for ME, both sides.

Sending you strength and prayers. And love to Sheila.

[Soccermom]

Sending strength and love for Sheila and her loved ones . May her days be filled with love.
Please tell Sheila I too hold her in my heart.

Marcia

[LoisLane]

Jen love and peace to your Mom

[Jen]

I will bring all your love and prayers from the "HER2 Family" to my Mom when I see her today.

[prolifejoan]

Thank you so very much. God bless you.

[Mary Anne in TX]

Love and prayers to each of you.

[Paula O]

How we wish this wasn't happening to Sheila.

Thanks for passing on our love to your Mom, Jen.

(((Hugs)))),

Paula

[prolifejoan]

Sheila is in all of my prayers. I am still hoping for a turnaround.

[fullofbeans]

Sheila is such a fighter and she has been positive for so long but this desease feels like a undeserved curse and it is so hard sometimes, you wish for the curse to stop but there is no way out, sometime this is simply too much for one person . I agree with the wise comment above all you can do Jen is show your love and give her hope for better days to come. Sending positive healing vibes from accross the pond

[Laurel]

Jen,

Please tell your great mother that she holds a special place in my heart. I count myself as blessed to have met her. I have such enormous respect and admiration for both of you. You hang tough and take care of yourself.

[Paty]

Jen,

Please give your mom a hug on my behalf, tell her I admire her so much and that she has a very special place in my heart. Love to both of you.

Paty

[karen z]

Thank you Jen.

[Mary Jo]

Jen, I'm so sorry. I wish there was more I could say or do to take away your pain. Soon, your mom will receive her healing and will be at peace and joy forever. Sadly, her loved ones are left behind and grieve her loss. I'm sorry. Sincerely, I am so, so sorry for you all. Peace be with you all.

[Yorkiegirl]

Sending out lot's of prayers and love to Sheila.

[StephN]

God's grace be with her.
Sounds like she is the "organizer mom" all the way through. I am sure she has some thoughts, and would like you all to know how she is thinking for her send off.
I am sure it will rival the best and she will have many adoring fans to lift her away.

[adelay]

Many thoughts and prayers for your whole family.

[Jen]

Today was one of the hardest days of my life but I am thankful I spent time with Mom and was able to tell her things I needed to tell her and to hear from her things I needed to hear. I told Mom about Emelie B's passing as well as KrisVell. Mom remembered Emelie went into hospice on her own. I also told her how much her Her2 family loves and is praying for her and how she has been an inspiration to those here on this board. She told me she wants to be remembered for how much she tried to help others even through this disease. I know her (her(2) family will always remember what a kind and helpful person she always is/was. At this time I would like to ask each one of you to perform a random act of kindness in honor of Sheila whose signature reads "Be kinder than necessary for everyone you meet is fighting some kind of battle" which is very befitting for her as this is how she has lived her life as you all know.

I don't know how to post pics on here but would love to post a pic that was taken tonight of my Mom and I can anyone help me with this? I can email you the pic and if you could post it for me in this thread it would be much appreciated. Thanks in advance.

Jennifer Evans

[Jen]

StephN can you please post the pic of me and my Mom I posted on FB here in this thread. Thanks~Jen

[Patty F]

Jen
I am so sorry to hear this about your mom. When I first started on this board she was always very helpful and answered questions I am sure that she has heard about a thousand times. I pray for her and your family.

[Jen]

I was glad I was able to pull my head out of my "EcclesiASStes" tonight for Sheila as she believes "Time for Everything
3 There is a time for everything,
and a season for every activity under the heavens:

2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.

9 What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet[a (http://www.biblegateway.com/passage/?search=Ecclesiastes+3&version=NIV#fen-NIV-17371a)] no one can fathom what God has done from beginning to end. 12 I know that there is nothing better for people than to be happy and to do good while they live. 13 That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. 14 I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.
15 Whatever is has already been,
and what will be has been before;
and God will call the past to account.[b (http://www.biblegateway.com/passage/?search=Ecclesiastes+3&version=NIV#fen-NIV-17375b)]

16 And I saw something else under the sun:
In the place of judgment—wickedness was there,
in the place of justice—wickedness was there.

17 I said to myself,
“God will bring into judgment
both the righteous and the wicked,
for there will be a time for every activity,
a time to judge every deed.”

18 I also said to myself, “As for humans, God tests them so that they may see that they are like the animals. 19 Surely the fate of human beings is like that of the animals; the same fate awaits them both: As one dies, so dies the other. All have the same breath[c (http://www.biblegateway.com/passage/?search=Ecclesiastes+3&version=NIV#fen-NIV-17379c)]; humans have no advantage over animals. Everything is meaningless. 20 All go to the same place; all come from dust, and to dust all return. 21 Who knows if the human spirit rises upward and if the spirit of the animal goes down into the earth?”
22 So I saw that there is nothing better for a person than to enjoy their work, because that is their lot. For who can bring them to see what will happen after them?

[Bunty]

Thank you so much Jen for sharing this final journey of your amazing mother, Sheila. We have all been blessed by her kindness and wisdom, and likewise you and your family have been blessed by having her in your lives. And Jen, Sheila is blessed to have you.
Wishing Sheila peace.
Marie

[rhondalea]

I'm so sorry.

[Ceesun]

Jen, I am choked up right now....please tell Sheila that "Ceesun" Cathy loves her, too. We have corresponded here for many years. "Faith, Hope and Love" The greatest of these is Love.....

[Mandamoo]

Sending love to you all. Sheila remains an inspiration to me. Facing our death is difficult but it is in doing this that we live and die well. How lovely you spent such a beautiful time together. May you all find so,e peace in this difficult time. A xx

[DanaRT]

Please give my love to Sheila and to you, too, Jen. Your mother is a very special woman- strong, smart, beautiful.

[3twins]

My deepest prayers are with Sheila and with you.

[StephN]

Dear Jen -
You are so brave to come here and keep posting updates. But that is the echo of your mom - she would follow through on a thread here and people could count on her.

Sorry I did not see your request to post the photo. I was busy last night getting my hubby ready for his wrist surgery today. So, time was taken up when I might normally have a few minutes to check this site.

I am so glad you and Sheila got to have some alone time and she can still do what she does best - be a mother!

[Mtngrl]

Jen,

I love the "random act of kindness in honor of Sheila" suggestion. I will do that! I completely agree that we should all be kinder than necessary.

Sheila is always kinder than necessary. She walks her talk.

[lkc Gumby]

I am very very sad to hear this. I wil continu eto pray for God's grace and peace for dear Sheila, Jen and all family members.. so so sorry.

[tricia keegan]

Jen, holding you both in my prayers and thoughts and in my heart, I love your Mum and she's an amazing lady and has been a friend to me too. xx

[sassy]

Sheila and Jen,

My thoughts and prayers are with you both and your entire family.
Sheila you are love and light.
May God hold you in the Palm of His Hand.



Jeremiah 29:11
New International Version (NIV)

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

A future that extends well beyond this life.

[Mtngrl]

For Anne Lamott and All My Other Teachers

She says there are only two prayers:
“Thank you, thank you, thank you”
And “help me, help me, help me.”
The psalmist says help comes from God,
But God works through people.

When I close my eyes and summon them
I see the God-bearers in my life
And feel their love,
God’s love
enveloping me,
enlivening me,
sustaining me,
sustaining the world.

They have names and faces and stories of their own
But for me they’re also the face, voice, hands of God.
The grandmother who always had time for me,
who always made me feel capable and worthy.
The babies I conceived and birthed and suckled
whose warm little bodies once curled against me,
trusting me completely.
The little girl with the broken, battered spirit
who didn’t trust me at all
sent by the God with whom all things really are possible.
The lover who showed up at such an inconvenient time
and showed me
how to be fully present,
how to love with nothing held back,
and then how to let go but never stop loving.

Loving, letting go.
Cherishing, learning, being present.
Treasuring, remembering, reminding.
Opening my hands, my arms, my heart;
Surrendering control
Then learning there’s no need for it.

Help? It’s already here
I already know what I need to know.
“It’s alright, it’s alright, it’s alright”
is God’s answer to prayer.

[Jen]

Today my sister Heather and I are taking Jasmine and her children to see our Mom. I will bring all the love for her here on Her2 Support with me and give it to her for you.

[Jen]

Looks like we will not be going to see Mom today with the kids. My sister spent the night with her last night said she isn't waking up at all so they are going to try and cut back on the pain meds to see if she will wake up a little. Please keep Sheila and her family in your loving thoughts and prayers.

[tricia keegan]

I'm sad to read this and will of course remember Sheila in my prayers.xx

[Laurel]

Thanks for the update, Jen. Keeping all of you in my prayers.

[ammebarb]

Keeping all of you in prayer, Jen

Barb A

[chrisy]

You are always in my prayers.

[JennyB]

Thinking of you all often xx

[Catherine]

Praying for you and your mom and family. Please give your mom a gentle hello and touch from all of her Her2 friends.

Hugs and love,

[ElaineM]

Sheila is in my thoughts. May God protect her and comfort her and her family.

[Redwolf8812]

Praying for your heart's desire.

- Penny

[StephN]

The ladies here at the San Antonio symposium are all thinking of Sheila constantly. She has our undying love.

[Gaver]

I am praying for your mom Sheila.....prayers best wishes for her....She will have the strength to bounce back !!!!!!!!!

U must have courage...for her.....

[jml]

Dearest Sheila~
Sending you prayers, so,so many, but mostly for your peace and comfort.
You have so often been my guide in this 10 year journey, as my diagnosis date was a few months after yours, way back in 2002. I have looked to you for courage, for treatment options, for experience, for guidance, for a soft place to fall or a kick in the a** when I needed it, shared celebrations of good treatment respone, but then all too often the disappointment of another treatment that has failed or just stopped working.
I am heartbroken at the thought of losing you. This disease has taken too many of our sisters, one more loss is too much.
You have been so strong for so long.
I promise you I will continue to carry our Ten Year Torch, and light the way for our sisters (& brothers) that may follow in our footsteps, to help smooth out the bumps in this unpredictable journey.

And to sweet Jen and your entire family, prayers for your comfort. Thank you for allowing us into your lives and support and pray for you during such a difficult time.

God bless & Keep the Faith~

Jessica

Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
11/1 - Echocardiogram looks okay, but still nervous about SVC obstruction/compression.
12/7- Chemo break bc of cont'd low plateletts & pushing PET scan date up to bc
SVC symptoms increasing.
Scared.

[Barbara H.]

Sheila,
I send you my heartfelt thoughts and love. You will always be my hero. Jen, my thoughts are with you and your family.
Barbara H.

[chrisy]

Sheila,
You know you like a sister to me - making mischief, laughing, crying, getting royally po'd at this stupid cancer. I love you and carry you always in my heart.

Jen - my continued prayers for you and your family. You may not feel like it all the time, but you are one strong bunch o women. Your mom and I would use another word, but Jasmine is a little young for that yet. Peace on you all.

Chris

[Mary Anne in TX]

Tons of love and prayers for Sheila who has give so much for so many for so long.

[DonnaD]

Dear Sheila, Jen and your entire family. Please know you are in my thoughts are prayers through out the day. May God surround you all with comfort and peace.
Donna

[Gerri]

Shelia,

I have always loved your positive energy and fighting spirit. Thank you for all you have contributed to the Board through the years. Praying for peace and comfort to surround you.

Much love to you Shelia.

[karen z]

Your mom and you (and family) are always in my thoughts and prayers.
Love,
karen z

[AlaskaAngel]

Jen,

You are so much of all that your mother is, including being your own person. As the leaving behind is near, that sharing between mother and daughter is precious, and she knows that you both have that forever. Please know we continue to hold you in our hearts.

AlaskaAngel

[Cathya]

My prayers for Sheila and all the family. So kind of you Jen to allow us to share this journey with you and your mother.

Cathy