~We Are Back From Radiologist Regarding Second WBR Or Radiation Options~

Believe51 · 06-18-2009, 04:19 PM

We went into this appointment with hope today but were not expecting to leave with 'second WBR' as an option. It is important to go to every appointment with hope and to take something home with you. As a whole we have considered all appointments let us leave with something even if it means we leave without an option. We have walked away from each session feeling full and content and that goes for some of the worst meetings we have had to face.

We met with the RadSquad today and the evaluation was to monitor symptoms, discuss the brain and to dismiss a second WBR. Depending on the person and their situation it still is an option for some, please note. We could have kept this for the last, last, last option but we have entirely let it go.

The mets are seeded everywhere and are all bigger than a grain of salt. This is an uncomfortable place to be but we were not surprised about the size or the amounts of infestation. Good thing is that he still remains symptom free and there is no edema yet, but will be expected to follow and it will consume the brain if not responsive. They are extremely dense and not the case with all brain met situations.

The team stepped aside for the most important part of this appointment, our RadMan. His conversation encouraged us to concentrate on a chemotherapy agent to help. Ed's initial WBR was given with an extra punch that pushed the limits. He said that he could give him a second WBR and.....he knows he could do no good for him.....but he does know that he could most certainly do bad for him.....he would steal all the things that make 'Ed' the person he is and that it would rob his complete essence. He does not recommend this as an option in Ed's case. Notice I said Ed's case, WBR in the manner in which we needed to initially attack with, left this as a sure 'no repeat'. It is still a dangerous endeavor but can still be an option for some and all radiation has its dangers of sorts.

We have taken tumor markers and detailed blood work on Tuesday (OncoMan) and their results will answer a few questions. One being to check to see if the Ixempra is working for Ed systemically and I cannot wait to see those TM's. Another is to continue to monitor the blood during this treatment and how the organs are continuing to function. It is not yet known if Ixempra passes the BBB so these mets could have potentially become bigger without it, start to die, or even become dormant. Since we do not know I will not concentrate on this but I will keep it as a potential source of hope.

I have a sick little boy on my hands and there are times great sadness which overwhelms my being. Somehow, someway, hope lives inside me....inside him. We push away the possibilities of what this reality could bring. I have no room, no time for this and surely no place to put that now. Cancer has already stolen from us and we have lived much differently than ever imagined, but it will never take our hope. It is all we have and I shall guard it like lioness.

With that all being said I leave saying this to you....Hope lives, courage carries and faith allows me to always believe. Let us all stay strong.>>Believe51

Midwest Alice · 06-18-2009, 04:31 PM

I am praying for you both.

Patty F · 06-18-2009, 06:26 PM

You are both in my prayers.

eric · 06-18-2009, 06:48 PM

Unfortunately (for both of us, Caryn and Ed), I understand what you're going through and it stinks. Ed's lucky to have someone like you by his side; someone that loves and cares for him so much.
I'm glad you keep hoping because I can tell you from experience, it's better than depression and ... you never know. Keep hoping!!!
I hope you get the results you're looking for.
Eric

chrisy · 06-18-2009, 07:38 PM

Marie,
Now you have more information - that a second WBR is not a viable option for Ed.

Now focus that energy and hope on potential systemic options.

As always you are in my prayers.

Eric- as are you and Caryn.

Much love
Chris

06-18-2009, 08:29 PM

have tried to log in before twice, seems very slow for some reason

anyway, you are both so brave and courageous in the way you are dealing with this, an example to all of us, I only hope if I were in the same situation I could do half of what you have done.

You are in my thoughts and prayers. Enjoy the Rhode Island summer, it is special and wonderful, I grew up there, and every time I go back there, although infrequently, for a visit, I am amazed at how beautiful it is.

caya · 06-18-2009, 08:39 PM

Dear sweet Marie, all I can offer you and Ed are my prayers and big hugs coming from Canada. As Chrisy said, focus now on the systemic treatments available, and keep up your strength.

Eric, prayers for you and Caryn too.

all the best
caya

sassy · 06-18-2009, 09:42 PM

Marie,

We are holding you hand and holding you and Ed in our hearts.

karenann · 06-18-2009, 10:29 PM

Praying for both of you and hoping for the best.

Love,
Karen

tricia keegan · 06-19-2009, 05:13 AM

My thoughts and prayer's are with you both Marie

Mary Anne in TX · 06-19-2009, 05:25 AM

Good Morning Marie!
You continue to build your life's education with your love and courage. You two are wonderful! I think I'd like to adopt you both and claim you as relatives forever. I send prayers for sunshine to fall upon your next doctor visit and for you to have your hope fulfilled.
Much love to you both, ma

Lori R · 06-19-2009, 05:36 AM

Dear Marie,
Your posts are always beautiful and inspirational.

I am in awe of the grace you've exhibited through this challenging journey.

Here is to a glorious day spent with Ed. Stealing memories from the clutches of cancer.

Love...Lori

Yorkiegirl · 06-19-2009, 05:51 AM

Marie & Ed the only thing I have to offer is SUPER CHARGED PRAYER's for you.

alicem · 06-19-2009, 07:29 AM

As always, prayers are coming your way from me.

Diane H · 06-19-2009, 08:49 AM

Dear Marie and Ed, I have followed your courageous journey and taken inspiration and comfort from your strength and faith.
Know that you are in my prayers.
Hugs and blessings,
Diane

Shobha · 06-19-2009, 09:42 AM

Dear Marie,

Praying very hard for both Ed and you. Your strength is truly inspirational. The very fact that you are taking to time to choose your words so carefully regarding WBR so as to not frighten others who may be considering it as an option is just amazing.

May god walk beside you for ever and be your guide.

Eric - you and caryn and your children are always on my mind and my prayers!

Love,
shobha

Believe51 · 06-19-2009, 07:57 PM

Dear Shobha, I try to choose my words with whatever I write because I know this is so important for us all. If I want you to know the real me, if I want you to learn or feel inspired, then I must be careful. I write these posts to keep everyone updated but I do it mostly for others to learn something that may help them or a loved one. I remember when I first found this site, Ed was direly ill and my posts were frantic. It was time and learning to breathe that helped me to become 'stronger' as you put it. Education has helped to, my knowledge of breast cancer lets me feel empowered. All in all, there are times I feel so damn scared and there have been periods of depression that passes. I do not consider myself as strong as you view me. I do what I do and say what I say because I love. I love him...that was always my answer to his Mom. Guess it is true when they say you find the strength. We used to panic about scans and waiting for the results. This may sound like I am just saying this but we very rarely have scanity like we used to. Ed and I just get the results asap and whatever they say, we know what the next step is, we are ready. I try not to focus on cancer like I first did in the beginning, the less attention and recognition I can give it, the more I feel like I am claiming my life back. Even now when I may be facing the last stages of this journey, I refuse to keep thinking about it. Life as normal as I can make it. I am so sick of cancer I almost did not go to the Relay tonight with my Mom. I went because we are survivors and I did it for my Mom, my Hubby and all of you. Remember you are growing and that you too are strong, time will only make you better!!>>Believe51

PS: God does walk by my side and so do you, what is better than that??

Believe51 · 06-19-2009, 09:44 PM

Ma in Texas, I am glad I found where I seen this post from you. I thought you already adopted me in the past but I can now see that we have to get that paperwork going quickly. I do not know what happened but I would hope you could straighten this out fast. Don't you be making me go for a scream ride without ya! (smiling) Thanks for the compliment. You do know I am demanding and high maintenance, right??>>Believe51

Mary Anne in TX · 06-20-2009, 04:15 AM

Oh, yes!!!!!!! I know you are high maintenance! That's one of your nicest qualities!
I read about the super/duper coffee machine and was so glad to see the news! I love the smell of all coffees, but never learned to drink it. I do candles instead to "take me away" to other places and times. I try new ones all the time and try to keep my ol' favorites around for "emergencies!
Oh, and yes, I did fill out the papers once before, but the agency said you were in such demand that I would have to wait in the long line to apply! I've resubmitted again and found much the same to be true, but decided to turned mine in with all the others!
Now, on the scream ride thing......I think Chris said it perfectly! Whenever the ride is needed and however it is needed, get in that car girl!
Stress and protecting others is our enemy. Sometimes the ol' scream ride is just the ticket!
Much love to ya, girl. I'll be prayin' and expecting ya to take care of you every day. ma

suzan w · 06-20-2009, 10:16 AM

your positive attitude has once again made me smile at how we all value the little things and make the most of every moment we have. thank you! Ed's courage (and yours!) must make him one of the mightiest of oaks...perhaps even going for the distinction that the US Forest Service places on those really special BIG TREES!!!