Faith and doubt, hope and uncertainty
 

Dearest Marie,

I have been speechless, yet I feel you know I often think of you and Ed and send out loving prayers in your names. I send hugs as well. But I feel I have little to add to the wisdom offered you on these pages. I simply have been sitting beside you in silence, which is at certain times the best that friends do. Hold your hand. Feel your hopes, fears and concerns. Suffer with you and support you. I am here nodding my head in understanding and profound compassion.

It appears to me that you have been given a number of solid avenues to consider from our Sisters. A lot of them scary and unconventional, but sometimes that is where we must go anyway.

I know you know, we here are all uniquely like-minded peers who nourish and fortify one another because we truly care. We help each other endure the pain, heal our wounds and continue to say YES to Life.

I would add this -- IMHO, to be realistic is to limit yourself. Let go of the judgments of others (docs included, standard medical opinions included) and believe in your ability to make your destiny become the truth you will live with.

I just read that FAITH and DOUBT are both needed to take us around the unknown curves. It resonated with me! When nothing is sure, everything is possible. So, Marie, retain the courage of your doubts as well as your convictions. Honor your doubts, and move forward anyway.

Hold fast your dreams. Without them, Life is a broken-winged bird that cannot fly some bright person wrote. Believe in your dreams. They come from your Soul and are being written at this very moment in the Book of Life. Dreams can open hidden doors.

We are all with you, Marie. Keep putting one foot in front of the other. One step at a time. One hour at a time. One day at a time. Breathe. And hug your husband for me, please...
Andi

)(*&!*&^!$&^%!^%$@!*(&$@(*&%!@*&$^@$(&!@)*&^
 

Marie, I am just numb right now. I realize that GammaMan must have called shortly after we chatted last Thursday. That evening a friend gave me a combined birthday/end of chemo party. Then we left on Friday for Missouri to attend a wedding and did not get in until late last night. I'm just now checking in on my Her2 family.

I am also speechless, unless you consider profanity a form of speaking. This !(&*(&$^&^!%@(*&@(@#@#) DISEASE! I am encouraged by all of the ideas that everyone is proposing. I love all of the love and thoughts of hope that is coming your way. My love and prayers are added in along with everyone else.

I cannot walk in your shoes, but I can certainly send prayers your way that God will be there to carry you and lighten your load.

I am thinking about you always my dear friend.

Love, Alice

Alice and Andi

You are both so eloquent...

Thank you

Intrathecal Herceptin
 

I have looked into this for myself if the brain mets continue. I had a port dye check and the Interventional Rad dr that did it reccommend someone in Oregon, he trained under him.
Neuwelt, Edward A.: Oregon Health & Science University - Portland, Oregon

http://www.ohsu.edu/health/meet-our-...r.cfm?id=11097

I have also checked into this through my Gamma/neurosurgeon at Barrows in PHX, AZ, he says it is plausible, they do it with injecting mannitol to open the blood brain barrier. I rescan in 1 week, at the last scan the 1 lesion that I have had gammed twice showed little change. And I as well have had WBR. already. So that is why I have looked into taking hercepitn in that way. Dr Barranco (Barrows) says that the risks are stroke, increased ICP pressure. Good Luck to you and I may not post often But I read and pray and cry with all of my Her2 members. Darita

Marie and MO - sending fierce warrior woman prayers for peace, for miracles, for blessings and for courage and strength.

It's important to remember that while not everyone can be cured, we can all be healed. The love, friendship and support that surrounds us in life is a big part of that healing. Feeling whole, holy, loved. With love, Flori

Darita, thinking about you today as I too explore brain options for Ed. Please keep me updated on your continued plan, I know you are about due for those scans.

I have been researching brain options for almost 2 years now. If there is anything I can help you with please let me know. The amounts of new treatment options and open clinical trial information I have makes me hopeful...

..that is until I read,

"Innumerable supratentorial and infratentorial brain metastases are seen. The largest measuring approximately 8mm, are in the middle frontal gyrus and in the left cerebellum. There is minimal edema associated with both. A small number of the metastatic foci demonstrate hemosiderin staining. Ventricles are unchanged in size."

"These is osseous metastatic disease in the left parietal calvarium and in the superior cervical spine-the odontoid marrow appears completely replaced by tumor."

Impression: "Interval progression of metastatic disease with innumerable new supratentorial and infratentorial brain metastases which are all subcentimeter in size. In addition, there is metastatic disease burden to the skull and visualized cervical spine."

This report has forced us to explore options that are not conventional. Here is to swimming against the waves. I am praying that we come home with more hope by being able to stay afloat. Wish us luck Sweetheart, we are going to break the rules.>>Believe51

My Heart is so heavy
 

marie,

I have been following you and Might Oaks story for two years and have prayed for both of you. I have no words to say OTHER THAN I LOVE YOU BOTH AND PRAY FOR GOOD NEWS.

Your journey has been long and hard fought.

Please know that I'm here right in Boston if you need a shoulder!!!!!!!!!!!!!!!!!!!

Marie,
I understand the tough challenges for you and Ed with those brain mets. Sometimes a list geared towards brain tumors could help. (But don't leave our list!!) In case you have not checked, a large one I know of called BRAINTMR, has the following email address to send posts to BRAINTMR@mit.edu and for info or assistance, see
http://www.braintrust.org/braintmr.htm
or contact mailto:braintmr-request@mit.edu
They may know of other lists too. Warmest wishes, Lida

Thoughts and prayers...
 

are with you both always.

Barb A.

Thanks Ladies for the added 'ummph' I need for today. Our list contains breast cancer brain mets and brain tumor information. It has medications used for brain mets for other cancers, medicines for other problems. It is conventional and reaching for the stars.

We will grab at many straws today and we are going to pick the biggest ones. We are coming back here and probally with an option that will pave the way for others. I mean it when I say we are doing this as much to save his life as to save others we love.

So friends, here is to reaching for the stars, for swimming against the waves, for drawing at straws. Some of the finest miracles happen when we hold on tight to faith, hope and love. I am praying for our miracle, for his as well as yours. Here we go into the uncharted waters.

And NootiesMom, I am touched at your offer. I will p.m. you with my phone number. I would love to talk with you while I am in town and let you know the score. Thank you for following our journey and for replying to this post, I appreciate it so.>>Believe51

Marie,
I am so sorry to know about Ed's brain mets. I pray that you find the right treatment for him soon and that Ixempra crosses the blood brain barrier. I'm also praying for your miracle, I know you will get it. I believe in miracles too.
Hang in there. Have faith.
God bless you both.
A big hug,
KarlaV.

Kavy, a close relative to Ixempra does cross the blood/brain barrier. These drugs are in a new class of chemotherapy medications. I pray for us all that this is the case here also.

Cannot wait to hear our options today and to celebrate with the hope I bring home for us all. There is no better place to share our miracles than right here. Guess you will talk to us at the celebration!>>Believe51