~A Mighty Oak Update~And A Note Of Thanks~

[Believe51]

Sorry I have been a bit distant for the last two weeks but I have been a Mighty Oak Mission. He did the spinal rads, 30 GUx10 but could not finish the last 2 treatments (total of 8). He had the normal 'tolerable' side effects but the main problem he faced was the throat. His throat was swollen shut so tight that breathing and even swallowing was an exhausting effort for him. It is important for me to add that these complications do not always happen with spinal radiation and I do not wish for this post to discourage or dishearten anyone, especially our new family members.

Four days he could not eat so much as a crumb. Water was choked on so bad that I cringed; one thing that I never want to do if the Heimlich Maneuver on this man's ribs. He did start drinking his Ensure, few days later added tomato soup, then stage1 baby food bananas and peaches. Finally he graduated to yogurt which at one point was too thick. Girls, he tried so hard to eat to maintain his weight and keep hydrated. Great work Mighty Oak, you be 'da man!!

I managed to get him some liquid pain killers to add to his regime. Including the patch he did fairly good with pain control. Now the radiation is working he has had great relief with some of the back pain in general. It is too early to downgrade pain medication since it took so long to get it under control for my Sweetie. Soon though, I will wean him back when he gives me the word that he is ready.

We love our new RadMan, who is the Chief Radiologist Oncologist at our Radiation facility. His support, bedside manner and knowledge has me flying on a cloud. We feel secure and protected, a feeling I was weighed down heavy with worry when our doctor left. He tried to tell us the importance of trying to finish those last 2 treatments. I must add: "This is the first time my husband used the words.....I can't.....in this whole trying journey!" I stood tall as I protected his choice. After all, I promised him that I would always push him to trudge forward, unless of course, he said STOP. He said stop and that is just what he did. I respect this choice because I see how he pushes himself. We all have the right to tailor-make our journey and I think his choice 'fits' him well (hehe)!

My Mother-in-Law is failing and I so wish we could intervene. She is a thick-headed woman with feist who refuses even so much as a homecare nurse. Uggh!! She keeps informing me that she wants to die before her son. Understandable, but I pray she is not giving up. Mighty Oak needs his Mommy right now. It was so cute to hear him on the phone with her. He basically begged her to fight, if not for her own self, then for him. I cried as I heard that 'scared six year old boy come out' again, a voice I have not heard since diagnosis. He needs his Mommy!

My father just got home from the hospital two weeks ago with his heart and went back in again last night. He contracted that terrible virus going around. The EMT's were excellant and I am in the process of writing a card of thanks for the local newspaper.

I have 2 major projects going on right now. One of them is a speech for Washington and other preparations for that trip. The other is helping Rose start her foundation and also to move forward with the Rexin-G quest.

Whew!! I reviewed this post thus far and I cannot believe how simple this all sounds on paper. I want to thank everyone for even noticing that I was gone, besides vacations and weekends Believe51 is here every day. I took the week out of work to stay with him. It was for the best because my neck and back are out of commission once more. Thanks for the phone calls, PM's, e-mails and mailed letters that I received. You all make me feel so loved and protected. Your support reigns supreme and I shutter to think of where we would be without you all. I love you all.>>Believe51

PS: I think it is time for a nap! Whew!

[chrisy]

OK Marie,
Take that nap - you must need it and certainly deserve it! You are the most amazing woman and deserve all the blessings in the world because you are a blessing TO the world.

love you so much
chris

[Jean]

Hi Marie,
If anyone deserves a rest - well you have won the award!

Do take care of yourself and take those energy naps.
I continue to pray for your continued strength, your mother-in law and of course for you're darling Ed.

Glad that you updated us, you were missed.
Jean

[schoolteacher]

Marie,

Thank you for the update. You are one of the strongest women I know. My prayers will be with you, the Mighty Oak, and his mom.

Amelia

[ElaineM]

I just want to say that I am sending you and your family some positive vibes. Mighty Oak is one great guy and you are one great gal. What a team !! I hope the rest of the family follows the examples you guys are exhibiting.

[tricia keegan]

Marie, I don't know how you do it but somehow you do!
Talk about Superwoman she ain't got nuthin' on you!
All my thoughts and good wishes are with you all through this, It can't be easy for you and yet you shine through and carry on.
You're a total inspiration lady!

[Kim in DC]

Marie, you are a SAINT!!!!!!! Remember, make sure you put the oxygen mask over yourself so you can help others


Kim

[Paty]

Marie,

You are a great woman and an inspiration to me!! God bless you and keep you strong and well for the great support you are to your family.

God Bless You,

Paty

[jones7676]

Take care of yourself. I hope he is well soon!

[Shobha]

Marie, it does not sound simple even on the paper. I was overwhelmed just reading. You are a powerhouse of strength and courage and an inspiration to all of us.

You, Ed and your family is always in my prayers. May god bless you all with peace and joy!

love,
shobha

[Donna]

Dear Marie,

However do you do it? You are SuperWoman in my book. And when you re-read your post and it sounded so simple on paper, I gasped! I want to be you when I grow up :-)

Love and continued boundless energy to you!

Donna

[StephN]

Right, as Kim says - put the oxygen on yourself first! So, have a can of Ensure for Ed and one for you. "Take a sip for Mommy, take a sip for Daddy ..."

Happy to hear the rads seem to have helped Ed's pain and the throat tightness is loosening now.

Please try not to burn your candle at both ends, as you need most of that flame for Ed and Mom.

Lots of love and strong hugs coming your way.

[WomanofSteel]

Marie thanks for the update on Ed. You are certainly a strong and wonderful caretaker. Ed is lucky to have you. Will keep everyone in my prayers.

[Bill]

Hi Marie! I've been wondering how you and Ed have been doing. I'm sorry I missed your update. You guys hang in there, and I agree with Shobha, it doesn't even sound simple on paper. You make sure to take care of yourself, too, sweetie.

[Joan M]

Marie,

You are a busy lady and have a lot of strength. You're an encouragement to me.

My prayers to Ed and your family.

Joan

[Mary Anne in TX]

Oh, rats, Marie!!!
Everytime I want to be a big baby, I remember your courage and endurance and just get mad!!!
I can't possibly stop now, Marie will know and shake her little finger at me....
You're a great example Marie Girl!!!! But you'd better take care of you or we'll all be shaking our little fingers at you!
Lots of love, Mighty One! ma

[Midwest Alice]

Believe,Hope this finds you two well. Thank you for your post, your strength gives me hope.

Love and hugs

[IRENE FROM TAMPA]

Marie - I think about you and Ed all of the time. I have not been posting much lately, but I do peek in once in awhile.

How you find the energy to take such good care of everyone is beyond me. Your spirit inspires me and your family is so fortunate to have you.

Tell Ed I am so happy he is feeling some relief .

You both take care.

Love you

Irene

[flynny]

Try to remember to take care of yourself!! A nap is a good idea, but a nice warm bath is also good. My prayers go out to you all.