Re: NEDenise Has Died
 

Jill,

I love that song by Mercy Me! Absolutely beautiful!

Re: NEDenise Has Died
 

Im sorry I waited so long to post. Im just so sad. I will so miss Denise. Even though she had been posting, I absolutely was not expecting this. I was under the impression that the scans did not show any mets, and she had something else going on that would be treated. Denise and I had our scans at the same times, and we both had had brain mets, so she was such an inspiration to me. Her positive attitude, her sense of humor, her skill in communicating with the written word, and the true beauty that radiated from her heart are just a few of the things that I will miss. My prayers to her family, especially her husband and children, and to all of us for peace and comfort. In a way I rejoice in the fact that it was not a prolonged period before she passed, because it kills me to think of her suffering and in pain, but for those of us left behind on this side of the great divide it is such a shock when things turn so quickly. Im just so sorry for everyone hurting, and I send big hugs and lots of prayers.

Re: NEDenise Has Died
 

Dear Ted,

So sad to hear of Denise's passing. My heart goes out to you and your family. Denise will forever be in our hearts.

Love,

Adriana

Re: NEDenise Has Died
 

Ted, I'm so very sorry about your immense loss with the passing of dear Denise. What a woman, huh?! You and the boys must be missing her terribly. Us too.

(((((((Consider yourself cyber hugged by everybody here)))))))

We're here for ya if/when you ever feel like talking.

Lifting your family in prayer right now,

Paula

Re: NEDenise Has Died
 

Friends I just had a thought I would like to share. You know how, when someone here was having a particularly difficult time, Denise would often say she was "pounding on heavens door with prayers"? Well, can you just imagine the earfull God is getting, dare I say tongue lashing God is getting, now that Denise is in his house and commanding his attention?

Denise my friend....if the cure is suddenly found....I will know it was your doing. I have missed your voice this past week.

Re: NEDenise Has Died
 

So sorry to hear this news. Ted, thanks for sharing the details. I know how hard that must have been. Your wonderful wife was one of a kind and a true blessing to this site. She will be missed. You and yours will be in my thoughts and prayers.

Re: NEDenise Has Died
 

I have not checked in in a couple weeks and am shocked and saddened to hear this news. Denise was a joy, and upbeat, wonderful spirit and she was the person whose posts I looked for on this board, the ones whose threads I never missed. I'm terribly, terribly sorry to hear of this loss. I had no idea she was so close - she seemed to be fine.

My heart goes out to her family.

Re: NEDenise Has Died
 

I have been away and have just learned of Denise passing. I am shocked and saddened. I pray that Ted and her boys are comforted by the happy memories and the knowledge that she was much loved here and will be surely missed. so so sorry.

Re: NEDenise Has Died
 

I don't check the threads often but when I do I always look for updates from Denise. I am in disbelief and so very sad to learn of her passing. She was one of the strongest, wittiest, most graceful warriors I've ever known. My thoughts and prayers are with her family. Denise, you are and will forever be missed very much.

Re: NEDenise Has Died
 

LeahM love your thought , thanks for sharing. I have quite a visual of what you describe. It makes me smile. I hope your right about the sudden cure, if anyone could persuade our Lord to hurry it along! she could.

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Dearest Ted, if you are rereading this, or your boys are....
I still hurt everyday about darling Denise. I still find it a bad dream, as I am sure you three do. Please know that I am there praying for your pain. It's the first few minutes upon waking that are the worst, I find. Please know that for so many of us on this website, we are STILL hurting and cannot just "unhurt." (I am sure you know what I mean.)
Nora

Re: NEDenise Has Died
 

Dear Ted,

Count me among the hurters. I think of your dear Denise every day... and pray that you and the boys are coping as best you can.

all the best
caya

Re: NEDenise Has Died
 

This is one of the hardest notes I have read. I had tried to provide support and some guidance on her treatment. It is frustrating that there was not an option for her to use to survive. I realize just how lucky Nina and I are to have a treatment team that was willing to go to compassionate care and treat the disease with something that was not well understood. I know there is a place in heaven for Denise. She was one of the most inspirational ones on the board.

Re: NEDenise Has Died
 

I too remain in deep contact with Denise. I somehow half expect to see her post, and look for it. Then -- miss it, and her with all my heart.

Paul, please help us be informed. I don't know what Nina was given. Arm us, please. Knowledge is power. No doubt we each know or will come to know someone in a similar situation and we'll want to offer help...

Re: NEDenise Has Died
 

I too have not been on the board for a while and am very saddened to hear that Denise has passed away. Like so many others here, I enjoyed her optimism, compassion and especially her humor. She was a very special lady, who will be missed. . . a lot.

Re: NEDenise Has Died
 

Have not checked in lately but am totally shocked and saddened to hear of Denise's passing.

I always loved reading her upbeat messages to all of us even during her most difficult days.

My thoughts and prayers go out to her family

Tracy

Re: NEDenise Has Died
 

It is frustrating that Denise was not able to benefit from some of the new technology that seems to be ongoing. Nina just went to a two year followup with the disease in full remission in both the spine and brain (on the brain surface). Four years ago she had a 5 cm spot on the brain and was told to make plans. All I can say is work hard to get the best treatment you can. Denise fought for this for herself, but was stymied as to how to get IT Herceptin like Nina has had. I am hoping the medical community hears enough cases to look more fully at this possible treatment method. Denise provided inspiration for many. We stayed in contact for the last two years. It is truly hard to lose a hero like her.

Re: NEDenise Has Died
 

Paul,

Please explain to me what IT Herceptin tx is about.

It is high dosages for brain mets, but I am missing something I know.

Hard to get into clinical trials???

Where did Nina go?

I know Denise did are damnedest to get into such a trial. No one could have fought more than she did!

Andi

Re: NEDenise Has Died
 

Denise and I tried to get her in to see people for the past four months. That is why it is so frustrating to hear about her death.
Intrathecal Herceptin is the use of an Ommaya reservoir or spinal tap to introduce drugs into the central nervous system (CNS). Spinal fluid is the solution that is used to move food and remove waste in the spine and brain. The solution can have cancer cells in it and these then deposit throughout the brain and spine once they penetrate the blood brain barrier. This is a part of the body where no blood cells can go, only spinal fluid. Unfortunately, cancer cells can somehow make it through the barrier in some HER+ patients. Since Herceptin, Pertuzumab, and TDM-1 cannot make it through the barrier, they now are able to grow without worry. Putting these drugs on the other side of the barrier does the same thing as IV treatment does in the rest of the body! The problem is that the dose needed to be therapeutic was not well understood. The new knowledge is that doses five to ten times higher in spinal fluid concentration than blood are needed because the spinal fluid clears these drugs so much faster than the blood system does. Clinical trials at the higher dosage are being developed, but right now treatment at the higher dose is only available through compassionate use (or compassionate care) on an individual basis with the treating physician. I am trying to have all individuals contact MD Anderson as they have acted to assist doctors and patients at this point in time.

Re: NEDenise Has Died
 

Thank you for all that, Paul! It's a fantastic discovery and your advocacy has helped Nina. We all appreciate what you tried to do for Denise. How heartbreaking that she could not find some "compassion" for herself. Heaven knows WE would have all signed a petition or done whatever to help.

They have to fix this problem!

Bless MD Anderson. Everywhere I turn I hear how wonderful they are at every turn. Good for them. Wish more hospitals could attain their level of "amazingness", if I may coin a term.

So appreciate you explaining this, as I keep seeing IV Herceptin and keep failing to grasp the concept.

Re: NEDenise Has Died
 

Rolepaul. God Bless you for all you have done for Nina and what you tried to do for Denise..I absolutely hate this disease!!!!

Re: NEDenise Has Died
 

This makes me heartsick. She was so funny and so courageous. I had no idea she was so ill.

Re: NEDenise Has Died
 

I thought this was a joke when I first read the subject line - like when Denise was "cured" by the insurance company. She always knew how to put a funny swing on things and ALWAYS had kind and loving words for everyone. I followed her closely because our treatment timing and diagnosis were so similar and she was so positive and upbeat in her posts.

I am still stunned with the news and am heart sick that she left behind such a loving family - and us - she will be missed.

Re: NEDenise Has Died
 

I just saw that I had a private message and it was from Denise. It was so thoughtful and made me realise again how much she will be missed.

Re: NEDenise Has Died
 

It's been almost a month since Denise's passing. Still can't find words ...

Re: NEDenise Has Died
 

It still feels unreal. :(

I miss her

Dawn. Xx

Re: NEDenise Has Died
 

Denise was always an inspiration for me. She was a role model and was very involved in this group. My sympathy goes out to her husband and friends and family because she was a special person who will be missed.

Re: NEDenise Has Died
 

Andi and Paul,
Thanks for posting. Noted.
"cyber hugs" in memory of our dear Denise.

Re: NEDenise Has Died
 

Today was christmas day.
As i put the turkey in the oven I started crying for denise, for ted.
cooking, cleaning, wrapping gifts, (planning a hawaiian holiday in Denise's case, probably), doing dishes or a load of wash....any housework or hassle, or preparation....denied denise for this day, this year. All the next years. All the next Christmases.
It was summertime sixteen months ago when she started a thread I reread tonight, announcing her brain mets. Sixteen short months ago.
Before she got home from the standard (for you americans, thankfully not us canadians) end of treatment base line brain mri , her oncologist phoned and said they found two tumors in her brain. She described her feelings, writing to us six hours later, on here, as "sad, not scared, or angry." "Just sad." Those were the words she wrote. She'd been crying for many of those six hours.
Tonight at my brother's place with my husband and my nephews and nieces I cried again for her. And I realized I am so identified, my stage and type of disease with Denise, that I am crying for me too. Like Denise I have no control over when or how soon this disease will take me. I can't predict. I just feel so damn sad.
I haven't had any testing other than a bone scan since my treatment ended at a time close to when her initial treatment ended. I've been childishly avoiding my oncologists' appointments, not showing up, dodging them. I finally, after being phone-spammed by the rads onc, saw him, had the bone scan, still no word from him on that, and am dodging the blood test and c.t.
Hospital sent a couple of appointment letters and I havent opened them yet and it's been a week.
I think the tears for Denise are also for me. I'm scared as hell by her death. Scared of dying.
I have "known" (whether time will prove me right or not nobody knows yet) deep inside me that I will not make the five year mark. I personally place zero weight by the five year mark thing. I just feel certain I too will die within the next three yrs. It's just a thing my body knows and my mind refuses to grow up and face it, get testing done etc.
I think the main reason, ( besides the obvious one...fear of dying...wanting to live out my natural lifespan)...is this one: I have decided not to get further treatment. If I go to stage four, I don't want further chemo, to be bald again, to be sick again. I just want to be treated for the symptoms that come from dying of the disease. If it gets too bad, I want to end things in Switzerland, I even know a place there, via a friend, where it is done.
Maybe I am just shaken by helping a friend have her dog put down on Saturday, at her house...the vet came to the house. I was there when life left the body and maybe it shook me and I lost both my dogs this year.
If anyone here is offended by my thoughts, bringing up my dogs at this time, please don't be as my dogs are/were my life, my only children, not having human ones, so please don't be offended by that.
But I just feel so damn sad.
So sorry Denise that you didn't make Christmas turkey this year. So sad for your family. But most of all for you.

Re: NEDenise Has Died
 

I keep having visions of Denise in Heaven doing the Hula and giggling while watching Ted and the boys try to as well....I don't know if the trip happened but I get some comfort from the vision.
Norkdo, I hope your wrong about your survival but impressed how honest you are with yourself. . Just maybe, all the thoughts and plans you have made will never need to be put in motion. I'm sorry for the loss of your four legged kids. Hugs and prayers coming your way.

Re: NEDenise Has Died
 

Dear Norkdo,

Christmas is a hard time because we can't help remembering the people we love who aren't with us anymore. Especially hard for you and some of the other higher stage girls who had been traveling the road with Denise for a long time.

I am not shocked about you making plans about what to do, or not do in the the event of a recurrence nor the contemplation of the Switzerland option. I am concerned about the depth of you grief and your despair. I am hoping you are able to reach out to someone in your family, a friend or a counselor to have a good long talk about your feelings.

Much love to you

Aussie Girl (Diane)

Re: NEDenise Has Died
 

My prayers fo her and condolonces to TED I know the effect of such parting.
3 group friends have joined Hema this month.I am really looking for words to express my anguish

Re: NEDenise Has Died
 

coux, diane (aussie) and pibi....thank you so so so so much. I feel you. Thank you very kindly. Apologies everyone for my selfish hijacking of Denise's thread. So sorry. won't do it agin. Pibi: I feel you. God bless you in your pain. I'm holdin' your hand, my brother. Thanks for holding mine, coux and diane. hugs.

Re: NEDenise Has Died
 

Dearest Nora,
Such a beautiful piece of your heart you left on paper for us. It is easy to learn who you are by such raw and human emotion.
Denise would have been so moved by your words. Your love for her and fear for us all is palpable. You respect life, all life, as do I. Do not apologize for incorporating your dogs. Love is love and living things are living things. Loss is loss.
Read Henry Beston's The Outermost House, wherein he describes the animal kingdom as nations among themselves. You, Nora, will appreciate this writing. It is how I live, apply these belief systems to all: people and creatures. It is what perpetuated my self-deleted post about thanking the mice that sacrifice for us, for they do.
A very well-published author friend of mine (40 books to his credit) has written much on the subject of relationships, culture, etc. And he once told me, "Karen, no matter what happens, everything will be alright." And in the long run, everything is alright. It must be. We are stars. Each and everyone of us. You are a star. I have always loved your face. I read it; I know it. And with this post, you gave us you.
Denise's love continues to be, look for it. Smile. She'll smile back.
Love,
Karen

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Karen, you are this light of love in what has been a dark tunnel. You survived 911 close up and personal, AND cancer, and yet you give, you give, you give. Aussiegirl, you may be very very right indeed about Christmas. I cannot share with the non cancer people in my life in a vulnerable way. I have to stay strong for them. Thank you for getting me this through this dark tunnel today ....tonight.
Oh how much love has been given me in my dark hours by yourselves. Thank you. Just like Denise did for me. Wow. The riches from this site keep piling up. Oh Pibi anc Coux and all of you who loved Denise, you are candles of great spiritual healing as we hold this vigil together in Denise's name on this thread. God bless you all who read here to honour a beautiful, loving soldier in this war on cancer, and you, my angels of kindness, whose kind wise posts teach me to walk in her fiery, red-headed, funny, wild, optomistic path.

Re: NEDenise Has Died
 

Nora,

I think what you shared was honest and heartfelt. The whole recurrence-monster thing looms large for everyone, especially for those that are Stage 111b, like you, but honestly none of us rests easily. I do want to remind you that mets to the brain usually occurs within the first 3 years with Her2 so you are past the halfway point. Believe. Simply believe until you must believe differently. Period.

I have a good feeling about you....

Re: NEDenise Has Died
 

Nora,

What more perfect place to share your fears and concerns than in this place where you are completely understood and cared for? Hopefully sharing those fears here can help to allay them somewhat. I agree with Laurel that your prognosis continues to look brighter as you travel down this path.

When those fears grab hold of you come here for venting and support and remember--

Do not let tomorrow's worries rob you of today's joy.

My best to you,

Re: NEDenise Has Died
 

Omg, Laurel and Rhonda, you put tears in my eyes. Only hearing it from fellow travellers can put tears of hope in my heart and i thank you deeply for your love over the cyber waves of this earth. Thank you so much for reaching over to hold my hand. God bless you so much for this. Big, big, rocking hugs of thanks.

Re: NEDenise Has Died
 

Hi All, Laurel where do you get that 3 year statistic with brain mets. I thought it often occurs late in the disease process. If course, I know this disease is unpredictable in its behavior. Thx Ceesun

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Ceesun,

Gosh, I know I read that in one of my endless searches. I just tried looking through PubMed to see if it might have been there. I confess I tend to wander through PubMed where one search leads to another good/interesting article and before I know it I have lost an hour reading. I will keep trying to find it for you, and hopefully one of our resident propeller heads (think seriously smart) like Lani, Hopeful, or Jackie will chime in!