~Husband's Journey Update....

[Believe51]

As you all now by now, Tykerb/Xeloda failed for dear Ed. He has been in treatment for 14 months and although we have come close no luck yet. The A/C recipe will be his third treatment option and although we know there are many combos I am getting concerned. The weight loss is a major concern for us at the moment, Friday he will be seeing the Nutritionist again. He is so good too girls, he drinks his Ensures without being asked, plenty of water consumption, eats small meals; tries hard to get himself better.

He is off his chemo schedule for 2 weeks and begins his A/C regime. I am so glad that Tiptoe was with us because in all seriousness, I felt her healing powers. Yes, I held her close and I cried for a moment in diappointment, frustration, fear. You would think that in 14 months that we would be in a better spot. I do thank God for the wonderful MRI results, for the brain mets that shrunk down to 2mm, that it has remained in the bones. No other organ besides the brain has been effected, but the way I see it is: Isn't that enough????

I look at him sitting quietly in his chair with Mookie and push back tears more now than before. I am okay girls, I still believe. I really do believe that he will buy some time out of this adventure. But I also know that he has Inflammatory Breast Cancer and stage IV at that, I know the implications of this type of breast cancer. The realities are sometimes some of the negative thoughts I find myself pushing away. I must remain positive and strong, I must believe, I must trudge on forward so I may see him through. But I also know those hard truths.

I do not know why I am writing today besides the point to speak to our NEWBIES and to express these overbearing emotions. They need to know that there is hope, that we can not look at the statistics (I literally want to puke when I look at them!!). The law of averages proves that statistics are just that, a rough number as a guide, kind of like those tumor markers. Many more men are getting properly diagnosed, have their numbers increased or are they actually becoming aware or not being misdiagnosed??...just a guide. I am planning on Ed to dance with NED, I truly believe he will. And if he does not....well then I know that we did everything possible to try to get him there.

We shall not hide from cancer, we face it head on day to day. We ask all the right questions, we make decisions based on the answers, we hold positve thoughts. Daily we pray, we ask for time and patience, we include ourselves and others in those prayers. I need all of the new friends on the site to know that just because the other 2 combinations did not work for him, does not mean a thing to you. Brenda is a fine example of what Tykerb/Xeloda does when it works.

Please do not lose heart. Keep the faith and fight every day. Remember that every day he fights this he is a survivor, for the dance of NED may never come for him (our reality). ANDI, I am not talking negative, just with the truth that I must live with. I would hate to go on this journey blinded because if that day comes when the fight is over, I never want to say that I did not see. I think that I will be content with the fact I was never in denial. Denial can sometimes take the form of negative thinking (not in this case). I am a positive person trying to be honest.

My words to all: I want you to remember that our journies are all different but our missions are the same. We want to live and shall fight for every moment we can get. This site is the best place I can come to for gathering strength, questions, helpful hints, love and prayers. It is from all of you that I live up to the name Believe. It is the one word you can use to sum up my personality, my life and it was always my nickname (imagine that, and I must live up to it now..hehehe!!).

Thanks girls for listening to me ramble on and on. The point was to let everyone know I AM FINE. Also for our new friends, hopefully I inspired some HOPE. And girls....thanks for loving us. Without you I will not even imagine were I would be. I am certainly a better person because you love me. I am stronger because you have nutured me into this wonderous person. Of course I always had the potential...ROTFL!! I love you more than all of my wordy novellas could ever state; I will love you an eternity. I have been distant lately because of the turns of the recent findings, and that I do appreciate. Do not fear, the prayers are always here whether I come to the site or not. I am a HER2support-addict, Andi and I are getting help though...tehehe!!

Thank you especially PinkGirl for allowing me to share Tiptoe on our journey. Hugging her and sharing the news empowered me almost as much as you have.

I LOVE YOU ALL>>Believe51

[Mary Anne in TX]

Marie....some precious angels are so worth fighting for! Your Ed is one of them. Sometimes this special people take a little more figuring out to get them healthy. They are simply wonderful, but so complex. It may take some doing to get the right concoction for your guy, but his journey, his tough battle blesses others day in and day out! You're commitment to faith and belief are just the right medicine for so many of us. The journey is hard, but each of the days you battle, you bless us all. May God stretch out his arms and gather you up for a giant hug and reassurance. Lots of love, mary anne

[hutchibk]

Hi Sweetie Dahling! I have missed you. Thanks for your post, NOT A RAMBLE... it is so very powerful and you have a talent for writing. I understand how you must feel as you check new chemo regimines off the list. As of recurrance #3 for me, I worry that I will go through a new one every year or less, furiously checking them off the list. But I know that you continue to Believe, and so do I. And you never know when one will suddenly be the exact one to rein it all in. That is what Ty/Xel has become for me, after not getting the desired response to the other regimines that came before. You and Ed are remarkable people. All my love and prayers....

[Patrice]

Thank you for sharing your thoughts - whenever I read what you have to say, the tears just flow - what you say is so eloquent, heartfelt and touching. I'm keeping you and Ed in my prayers that this is the treatment that gets him to NED.

All my best, Patrice

[Mary Jo]

Hi Marie,

Words cannot adequately express how I feel for you and Ed, so I will simply offer you my heart and a hug. I pray for our Lord's Peace to surround you both.

Love from my heart to yours,

Mary Jo

[Andrea Barnett Budin]

Marie honey, I am not in a contest to out distance you in posting longgggg messages, but here's *my* rant. You know how much I love you. And, your words are never considered a rant. They are full of wisdom, truth and love.

My arms are around you. I know you know this. And I can feel your frustration. It is only natural. But I want you to know that surely I too live with my moments. I am not even close to perfect, and never claim to be. 8 1/2 yrs of being STABLE, dancing w/NED, has left me living with humble grateful for that reality. But I also live w/moments when I FEAR I will stumble. Recurrence is always a possibility. Though my SPIRIT is standing guard!

I experience the hard Truth of metastasis and then consciously choose to push such mental meandering off a cliff! I can look down and see it crashing to its demise! I somehow remind myself that IF ONE PERSON HAS SURVIVED YOUR KIND OF CANCER -- YOU TOO (I TOO) CAN SURVIVE! And I reason out -- just WHO ARE LIFE'S VICTORS. I have this Knowing deep inside me that the winners in Life are the ones who clearly envision their triumph, who immerse themselves in thoughts of triumph (vs faltering) ALL DAY LONG, EVERY DAY -- sending out an intense signal to the Universe full of positive energy. I happen to believe that as our thoughts are energy, they are emitted from us from and go out from us on varying frequency waves. Positive energy travels at a higher vibration (you know those *vibes* you sense from others?). Such energy goes out on higher and faster waves -- and is sensed -- and responded to -- by the Universe.

The Universe responds to our signals IN KIND. So, I Know that positive energy draws more of the same right back to you. And therefore, it EMPOWERS us to command our desired destiny to us. So I am passionate about what I allow the occupy space in my brain. I don't deny. I don't hide. I don't suppress. That is not healthy. But I move beyond my fears, which exist to be sure.

I BELIEVE that what we dwell on all day becomes our reality! That is why I have that 20 pound rock that has BELIEVE etched in to it, in case I forget. That is why I have that big 2 1/2 foot long sign that says BELIEVE that I am going to put in my office -- in my face, but for now travels around the house with me. (YOU ALL SAW PICTURES OF THESE WITH TIPTOE THAT PINKIE POSTED FOR ME WHEN TIPSY VISITED BOCA...)

The intensity of your belief, of your INTENTION and your EXPECTATION are full of might! Just think what all that passionate energy calls to you!! We all have our weak, human moments, when we are full of uncertainty, the sense of defeat, statistics that taunt and torture us, anxiety and fears of the worst case scenarios and possibilities. But I'm here to tell you that we each can surmount those negative hauntings and stomp on them -- just as the chemo, and the power of our thoughts, will snuff out those *!#% malfunctioning, out of control cells!! We have a degree of control in determining our fate! Don't negate your power! Don't forfeit it to being a *realist*! We have the power to HEAL our bodies. We must constantly remind our bodies WE are in charge, and give it its orders precisely! Stirred by our SPIRITS and discharged by our minds!!

+ WHAT WE THINK ALL DAY DETERMINES HOW WE WILL FEEL! So our WELL-BEING (emotional and physical) depend on what we consciously choose to fill our heads each day! We must consistently troll our mental chatter and reprogram what needs to be corrected, authoring and re-scripting our psyches and our attitudes. *WE* rule! Never forget that.

My money is on you Marie, and Ed, for overcoming all the towering obstacles and prevailing! And you two have been handed far too much, in my opinion! But so much love and so many prayers are being sent to you and out in to the vapors in your name
-- that will be sensed, and responded to! Don't forget that either...

As for my hopeless addiction to this site, I have decided not to entertain the idea of REHAB for this! I must give in to my need to stay in touch with all the extraordinary people who populate this board! I love their energy, their support, their fighting SPIRITS and their intelligent, informed advice. It is priceless. I admire you all more than I can express.

It fascinates me that each of us feels the other has been through so much more than we have! And we've all been through hell. We don't give ourselves credit for being the Warriors we are. Superheroes all! HEROES AND SHEROES!!

And, I also know, that being a SURVIVOR is not a forever thing that is simply bestowed on us. It is a daily battle! Regardless of what stage we are at, no matter if we have reached remission or not. This is a fight we must wage with as much grace and courage as we can. And being at war while never losing sight of the joy within each day. There is the need to be vigilant (knowing the sooner you arrest cancer, the greater your chances of being victorious) -- that somehow must be balanced with the need not to become so obsessive that we lose the beauty and awe of Life itself. We here they found a cyst, we feel pain in our spine, joints, ribs, we feel fuzzy-headed -- and we begin by panicking. Then, we settle down and think it through. Or we post, asking for input. And we receive such wonderful support, acknowledgement, validation and fabulous medical advice, we almost don't need to seek an actual doctor. We have access 24 hours a day, 7 days a week. AND THAT'S ALL THANK TO CHRISTINE AND JOE (may God bless them with long, long lives for their gift to us all!).

It is a neat trick to walk that tightrope, performing that balancing act, but it is the way each cancer Survivor must learn to live. It is the way each of us must come to accept as a new normal and stop struggling against. Why? Because resisting this reality creates suffering. Plain and simple. So we march forward and upward. We plant ourselves in The Now, because if we look too far ahead we scare ourselves to death and we feel totally overwhelmed. And because The Now is where HAPPINESS is!

Mostly, I have from Day 1 -- lived AS IF what I wanted was already here. This mindset allowed me to live with a special bliss and serenity that befuddled those who met me. They told me they could see something ethereal in my face. They'd tilt their heads from side to side studying me and wondering aloud what they were looking at. They'd sincerely and seriously ask me, How can I get what you've got? And I'm talking about people who never had cancer!

I LIVE IN THE LAND OF YES. Where all worlds exist and all possibilities and miracles are available to us! I invite all who wish to bless their lives to please join me...

Sent with much love, as always,
Andi

[dhealey]

Marie, my heart goes out to you and your husband. May god wrap his healing arms around you both. I needed to read your post as it has given me hope which I am losing as we wait to see what treatment options there are for my son-in-law. You have given me strength today. Praying they find the right combo for your dear husband.

[chrisy]

Rant on, I love you all.

[Barbara H.]

Hi Marie,
My thoughts are with you and I wish there were something I could do to help. My cancer is currently only in the bones and the trial at the Dana Farber I am on has been a miracle drug for me. It is also very easy to tolerate and it does not make me sick. I don't have to take any premeds. I think it would be worth trying if Ed could get into this trial.
Best wishes,
Barbara H.

[tousled1]

Marie,

You were not ranting. You were speaking from the heart as you always do. I'm praying that the A/C regime will be the magic chemo that Ed needs.

[Cathya]

I have heard of Herceptin DM1.....I think they call it Super Herceptin. There is a chemo type substance attached to the herceptin. I will be praying for you.

Cathy

[lilyecuadorian]

Dear MArie and Ed ...dont give up, when thing are no going the way that we want it ...rest if you need it but dont give up the live maybe change on the next block you never know how close ED is to be NED to get the other 50% ....listen to barbara H. maybe Ed qualify for that trial ???

[caya]

Marie,

I am praying for a quick and complete response for Ed for this new chemo regime. A dance with NED is in your future, I pray.

all the best
caya

[nitewind]

Marie, just wanted to let you know that you and your dear Ed are always in my prayers. I believe in your miracle.
Hugs

[IRENE FROM TAMPA]

Your signature say's it all honey - BELIEVE

and that is all that we can do

Keep the faith my friend and we love you and are always here for you and Ed.