NEDenise Has Died

[NEDenise]

Wow, what an outpouring! Denise's brain related symptoms had been worsening over the last few weeks although she was sure it was the dreaded steroids that were to blame. Her balance had become more suspect, she had a few days when her eyes wouldn't coordinate to focus correctly, had debilitating fatigue but most worrying her speech had become not quite slurred, but certainly not normal. She did have the lumbar puncture and cancer cells were found in the meningeal fluid. With that diagnosis, her medical team discontinued the Tykerb and Avastin in preparation for the Ommaya reservoir and a new course of chemotherapy.

She was discharged on the 14th and we came home. She was OK although not really herself through Saturday evening. Sunday she slept almost all day and wasn't able to get up off the couch even to use the bathroom. Monday I helped her get cleaned up and dressed to leave for the hospital, but she was just so weak that when she tried to stand her legs buckled under her. I tried to get her up and carry her the few feet from the couch to the door but when I lifted her up, she was in a great deal of pain and described the experience as if a thunderstorm was erupting in her head. Denise being Denise, she decided she did have the strength to "scoot" across the floor in the sitting position as long as I could back the car up to the front door so we'd only have to try lifting her one time. When she tried to stand at the front door threshold, she pitched forward and must have had a seizure, because I thought for all the world as if she was having a stroke - face went scarlet, eyes wouldn't focus and she started an incoherent babbling. Called 911 and she was rushed to the local ER where they got her stable and air-lifted her to HUP.

After determining that she wasn't having a stroke, more CT and MRI were done Monday night. Docs were going to meet with us on Tue am to discuss next course of action. When I arrived around 10 on Tues. I had already spoken with the neurosurgeon and oncologist briefly by phone. Neurosurgeon took me aside as soon as I arrived to tell me that the previous evenings scans had revealed a large mass at the base of her brain and that she wouldn't likely survive a surgery that wouldn't be able to do much more than relieve the pain that she was in. We decided to medicate for the pain rather than going through surgery and by mid-afternoon she had slipped into a coma. She was transferred to an in-patient hospice floor in a nearby building around 8. There wasn't anything more that they could do for her in the neurosurgery ICU. Hospice was able to keep her comfortable with a morphine drip and some other medication to reduce buildup of mucus and she passed a few minutes after 5 am on Wednesday.

The speed of her decline and eventual death was both shocking and terrifying. Fortunately, her brother was able to get the boys to the hospital in the afternoon when she was sleeping and relatively comfortable, so their last images are of her sleeping comfortably. I'm absolutely astounded at their resiliency and courage. Both are understandably sad and stunned. I feel so bad for them that at 14 and 16 they've had to mature so quickly, having lived with the damn disease hanging over us all for the last 3 years.

As was posted, we are having a memorial service for her on the Friday following Thanksgiving - she wanted to be cremated rather than buried. For those of you who want to call to talk, the number my mom gave out is the home phone and probably not the best way to get a hold of me. Call me at 215-530-7674, that's my cell.

A wave of tears and grief come over me when I read through the wonderful posts that you've added, so I'm not sure I'll be back here for a little while. Rest assured though, that I will check in from time to time if that's OK with you. Until then.......

Ted

[BonnieR]

Ted, I'm astounded at YOUR resiliency and courage You have been an absolute rock throughout it all And so gracious and considerate to share these last days with us You are just like Denise, thinking about others and their needs. It means a great deal to us to have "closure" and understand what happened to someone who was so loved here. God bless you for sharing with us. I understand why you might want to stay away for awhile but you are always welcome here. God bless you and the boys in the days ahead. You'll be in our hearts
Keep the faith

[Bunty]

Ted, Jack and Ben - you are all amazing, and so blessed to have had your beautiful Denise as wife and mother! As you can see, we all LOVE Denise so much as she gave so much to us. Thank you for your post Ted - Denise reached out to so many of us here, we would love to be able to do so for you and your boys now, so thanks for giving us the opportunity to do so. As Bonnie said, it's incredible that you are helping people here - your post at this very sad time is aiding many of us here to come to terms with the shock. Ted, you and the boys will continue to be in my thoughts and prayers, particularly in this week ahead.

God Bless.
Marie

[Laurel]

Thank you, Ted, for showing us such compassion as to come here to explain Denise's last days. You must be as kind and gracious as your dear wife to put us before your own grief. I am confident that I speak for us all when I express gratitude. Knowing how things turned for Denise is comforting as it will enable us to sort it out in our minds and will serve to sooth the ache in our hearts to know the "why" of it.

You are most welcome here anytime. I am sure you and the boys will be alright with Denise watching over you from above. Please stop by in a few months to let us know how you are getting along. The memory of your Denise will be cherished here forever. She is one of our most legendary warriors.

Laurel

[caya]

Ted, I can only echo exactly what Laurel said. Thank you so much for relating your dear wife's last few days, she meant so much to us here. Just needed to hear the "why", as you said " the speed of her decline and eventual death was both shocking and terrifying." Very gracious of you to let us know, and so soon afterwards.

May you and Jack and Ben take comfort in each other.

all the best
caya

[karen z]

I do not have words. I did not see this coming. My best to Denise's wonderful family. Our thoughts and prayers are with you. I, like others, are in true shock.

[Mtngrl]

Dear Ted,

Thank you for taking the time to give us these details. I am newly saddened, but it helps so much.

You can come back to visit any time you want. You and the boys are part of the "family" here. We'd love to hear from you, and to have your perspective on how cancer affects those closest to the person who has it.

I remember meeting you and Denise at that restaurant in Philadelphia (though I can't remember the name of it.) I know I had some delicious comfort food, and the three of us had a great time.

I am glad I got to know Denise and, through her, you and your sons. She lit up this board, and I will always carry a part of her light with me.

I am so very sorry for your loss, and so grateful that you were able to reach out to us and answer our questions. Thank you.

[MJsHusband]

Ted, I'm sorry for your loss. Sorry for our loss too. I've been on this site for 3 1/2 years, mainly reading but occasionally posting, supporting my wife in any way I can. Denise always was so positive and a bright light for us when we were facing the next thing that popped up. I've always seen your photo with her and knew you were dealing with just about what I have been. Again, I'm sorry and pray that you and your family find some comfort somehow at some point.

Greg

[Andrea Barnett Budin]

Dear sweet NED TED -- bless you! Midst all you are going through in your life, with darling Denise, with your sons, you have taken the time to give us some understanding of what happened, which we deeply craved. A remarkable man, obviously, and who else would Denise have chosen but a man like YOU!

Your generosity of Spirit touches each of us. I can see Denise scooting (as my husband decided to do when he kept passing out). It's the safest mode of transportation!

Her docs never gave up on her I see, and that is gladdening to my heart. She would never give up, she had a team that would not either! Good job, Denise! Brilliantly thought out and selectively chosen, you surrounded yourself with Ninja docs, of course.

A thunderstorm erupting in her head (yes, we hang on her and your every word, Ned Ted!) -- her descriptive abilities fully in tact and far above the capability of most, even midst her calamity! Denise has never failed to astound us with her tales and depictions, and of course, to make us smile if not snort out loud!

The scene at the front door that you have generously shared with us clutches at my heart and must have scared you tears! A 911 call alone shakes us to the core. And the ambulance -- and then airlift, oh my Lord, Ted, how blessed she was to have you!

You and the doctors did all you could, and in the end, keeping her comfortable was the best you could do. So glad Jack and Ben got to say their final goodbyes to their sleeping comfortable mom. So important!

We are sad and stunned from afar, but you Ted lived through it, obviously shocked and terrified yet her gallant hero and strong under fire dad to your boys. You have set a standard for them to live with forever; it's a gift you've given them. You and Denise have obviously done an outstanding job in raising extraordinary young men.

I so wish none of this had happened and I offer all I can, my unconditional love and caring for you, the boys and your whole family... Plus my admiration for the person Denise was in this life and for who you very obviously are, Ted. God bless you and help you get through this.

I'll hold off on calling you for a bit, let you gather yourself together and properly grieve your profound loss. But please know that I will be thinking of you (having seen your picture every day for years with Denise on the HER2 site). And again, I am thanking you with gratitude I can't adequately express for extending yourself midst this horrific ordeal, because you seem to understand our need as Sisters who loved Denise more than words can say.

Return to us whenever you are ready, Ted, and as often as you'd like, any hour of any day. We're here for you. I glorify all caregivers, as I know with my husband, I swear I worried more about him than I did myself (seeing expressions on his face, the face I know so very well, that I had never ever seen before). He was so scared. I understood how helpless he (and all caregivers) feel, wanting to do anything and everything and yet unable to make it all go away for us.

I know you'll stay strong. It's obviously your nature. And I know you know that your boys need you now more than ever. May their love for you, and Denise, and your love for them all keep you close and help you navigate through this storm of your lives. A true thunderstorm as we can only imagine.

With love, which is the most beautiful emotion in all the world,

Andi

[norkdo]

As others have said... I have no words. Holding you and the boys in my heart. Knowing that her wish was for her boys to be able to afford college, and her setting up that fund so recently, despite her brain malfunctions, gives us something to do with a tiny piece of our pain. For the three years of my cancer journey it was Denise who steered my ship in this s&(&storm (as she put it). I've been hearing "Sail on Silver Girl..." all weekend through my tears, courtesy of Amy. Listening to "Bridge Over Troubled Water," thanks to Amy, will be forever attached to that beautiful, feisty redhead in my head. As many have said here, Denise's spirit will be indelibly etched in our hearts for the rest of our lives: her humour, her feistiness, has not left this earth. It's circulating coast to coast in the States, in Canada, New Zealand, all parts of Australia, England, Ireland, Scandinavia, Paris and all over the world where this weekend and all next week, everyday we are telling our family and friends why we are so so so sad....and why, right after we tell our mates and friends about her we smile and share a joke or a hilarious depiction she gave us of herself coping over her 1700 posts, and thousands more Personal Messages and emails. Thank you deeply, Ted, for giving us the details we were craving....
Nora

[Catherine]

Oh my goodness. This is way too sad to have a strong, vivacious warrior leave this earth. Denise had a great attitude and a gift for sharing it with all of us. I am truly sorry for her dear family. I love the picture of her and Ted. I just wish she could still be here. She fought so hard and shared so much. She will be missed by all of us.

Hugs to all,

[Ceesun]

Dear Ted, All through church today all I could think of was you, your boys, and NedDenise. Thank you for sharing the last week or so of this disease. Speaking for myself, I was worried about her symptoms and afraid things had taken a turn for the worse. Please accept my heartfelt sympathies and good wishes to all of your family. I so admired Denise's wit and spunk and fortitude. Having been on the board for some years now, I notice some caregivers return, some do not, and some perhaps read and choose to remain incognito, so to speak. You are very generous of heart and please feel free to drop by as much or as little as you like..whatever is best for you going forward. I am trying to take comfort today knowing that Denise did achieve her goal...she is now and forever NED! Still I feel choked up.... I will be thinking of you all the day after Thanksgiving...with the deepest respect, love, and light. Sincerely, Cathy aka Ceesun
Dearest, Andi thank you for posting, I knew you would "appear" when ready.

[tricia keegan]

Thank you Ted and you and the boys will be in my thoughts and prayers in the coming days xx

[jacqueline1102]

Dear Ted,

I wanted to convey my deep sadness for you and your boys. Indeed, your family appears to display the same generous trait as your lovely bride. As here you are sharing the information with all of us on this board when clearly you did not have to. The holidays this year will be difficult. Quite frankly, I wish to say they will suck. While we here enccourage you to pop back as you wish, it is certainly understandable to take time away whether temporarily or permanent. I wish you and your children some peace. I never met your wife or spoke with her but I read her posts. But, what struck me about your wife was how her light just shined. Her humor, wit, and joy was evident despite metastatic disease. I am sure that many would say she would light up the room. And she appeared most passionate about her life with you and the children. On this board, she was known and beloved for her support and perhaps one would say even her cheerleader spirit. Her resiliency despite horrific circumstances needs to be bottled. But then again, there is no one like her. I am truly so very, very sorry.

Jackie

[sassy]

Ted, thank you so much for posting and sharing the rest of Denise's story with us. It helps to bring closure to so many of us who felt Denise as a force and a friend in our lives.

I will keep you and the boys in my thoughts and prayers. Please come here whenever you care to. You will always be a a part of us.

[Mtngrl]

Hello, all.

Denise wrote this on February 27, in a thread she started about the possibility of new brain mets. She had said something much like it to me in person, but I wasn't going to mention it until I found that she had already said it on the board.

"KsGal - I'm right there with ya. Really, I am. Until someone walks where we are, I'm not sure they can truly understand the violation we feel. Now, we not only have the beast in our bodies, like all our sisters, but in a very real sense, it's trying to kill not just our bodies, but the person we are. It's trying to scrape away at our personality, our memories... in an instant, it could rob us of the person we are...one bleed...one seizure...and the person we are, could be gone forever. Our bodies might survive but that's not what I want for my family. I admit freely, that I don't feel as 'sick' as many of our sisters with mets in other places...their SEs are a misery for them and those who love them. But, for me, having an invader in my brain is horrifying. I don't want to lose me. So, you can bet, I'm praying for both of us to get the kind of news we need to pick ourselves up and fight on! Sending a HUGE hug, filled with strength!"

She didn't want to die. She wanted to see her sons grow up, maybe go back to teaching. She had everything in the world to live for. But if she had to die, she wanted not to be so altered by either the cancer or the treatment that it robbed her of herself. It came far, far too soon, but otherwise she got the kind of death she wanted. At least there's that.

The quote also shows how she always was. She wrote to us about what was going on with her, but she always, always had kind and affirming words to say to everyone else. It was never just about her. She was an angel of mercy to every one of us.

[dearjilly]

I came on here to tell Denise and Ted that I was thinking of them, as I was watching the Grey Cup. I couldn't believe what I read about my friend Denise. I have been crying all night. Ted, please know that I am thinking of you and the boys. Strength goes out to you all. Thoughts are with Denise too. I am just in shock. I miss her. She was there for me. We were going to get together. I was looking forward to meeting her in person. I was going to say "thank you" to Denise to her face. She really helped me. If it wasn't for her, I wouldn't be on Avastin and I wouldn't be getting better, I would be getting worse. Denise...this place will not be the same without you. Thank you for being there for me girl. xoxo Jill

[JillaryJill]

Ted, I went to mass yesterday and dedicated my mass to Denise, you and the boys. All of my prayers were offered specifically for your family yesterday. Denise, loved you 3 so passionately, that came through her posts loud and clear. It was so unselfish of you to post the details of the progression that led to Denise's passing. There is so much sadness on this board, but we are also all about the science of what is happening to each of us, hopefully to help someone communicate with their doctors more effectively, or perhaps discover a new treatment plan going forward. Denise would have loved that you shared this information on the board with such grace and candor. Denise and I had private messaged each other a couple of times. She was a person of faith and she communicated that to me. There is a song by Mercy Me, called I Can Only Imagine. It makes me think of Denise. "I can only imagine what it will be like, when I walk by Your side. I can only imagine, what my eyes will see. When Your face is before me, I can only imagine. Surrounded by your glory, what will my heart feel? Will I dance for you Jesus? Or in awe of You be still? Will I stand in your presence, Or to my knees will I fall? Will I sing Hallelujah? Or be able to speak at all? I can only imagine...."
I have this vision of Denise dancing and singing Hallelujah!!!
Ted, yes what a tragedy for you and the boys to lose Denise so young and go through the last 3 years of watching Denise suffer. Denise spoke so highly of you and the boys, and I am sure she was comforted by the fact that someone of your kindness and character would be raising those boys.

[mamacze]

Horrified and shocked. How we will sorely miss the musings of NEDenise - who was always such a bright spot of joy and hope and always embracing the sadly elusive goal of a long slow dance with NED.
Number 1 on my list of things to debate with God ... Where is the Justice? How is it that such a beautiful spirit and giving heart embodied by Denise can be taken from a loving husband and 2 living large sons? To rip such a bundle of joy from the heart of a close and loving family; I just don’t get it.
Ted - you and your boys will always be cherished by the daughters and moms on this board because we cherished Denise. If you ever need or want some lovin’ up or motherly or sisterly advise just chirp out here and we will be all over it.
God speed to you Ted and to your loving family. Your angel has certainly earned her wings and left some deep and loving roots.
Love and hugs,
Kim (from CT)

[KG1993]

Dear Ted and family,
I do not check the support group on a regular basis, but felt something was not right because I had not seen a post from Denise in some time. My heart is breaking for you. She was a huge support for me on this forum.
Sincerely,
KG