~Chemo Begins Once More For Mighty Oak~5/8/09

[Believe51]

Friday marks yet another chemo regime for Ed and with that I say here we go again. For the first time since diagnosis I was and still am a little apprehensive about this regime. I am going to do what I do best and follow my heart to guide him through the Ixempra treatments. I feel something deep down that says this is okay. We will do 2-3 treatments and scan. If his tumor markers do not decline we will immediately change his course.

I still ponder the Herceptin getting added but want to wait to reintroduce, if we reintroduce. This month marks 32 months, much more time than we ever thought possible. For this I am grateful but we feel that this nutrition/weight issue will finally break him. He now is a mere 191 pounds and with his height he can no longer wear shorts in public comfortably.

I am afraid once more as I watch his health diminish before our very eyes. He is sleeping most of the time and does try to eat as much as possible. When he does he is either full right away or never gains the weight. This is the major reason for waiting to go on a chemo but we are no closer to gaining weight than we were 8 weeks ago. This frightens me because I am feeling the nutrition problem will steal him from me far before the cancer will.

Tumor markers steadily rising into oblivion. CEA is slightly above normal which in our experience does not represent the cancer in the bones. In fact, recent scans do not find any cancer in the bones. We know it is there in his body but no scan tells us where. It is there though, somewhere. He will not be doing anymore radiation anywhere, although Gamma is still on the 'will do list'.

I so worry about his brain and that will be getting scanned in a couple of weeks. Right now we are praying that this cancer is not in the brain and that this chemo is tolerated enough to buy us some time. Although we had little choice but to wait to start chemo I am just constantly praying that has not travelled back to the brain. This hide and go seek game is tiring.

Anyway, once chemo starts we should be able to get the pain under control again. He can barely keep up with that and has had little choice but to be very well medicated. I miss his so much and cannot wait to be reunited with him once again. Please pray that he is healthy enough to survive this treatment enough to get him to a comfortable place in life. I worry about this damn (yes I said it~lol) treatment beating the little life he has out of him.

This post was meant to inspire a bit but it has not proven effective (smiling). So here goes.....this man has gained some form of time from most of the treatments. Whole brain radiation worked wonders for the hundreds, yes hundreds on micro brain mets that were salted on entire brain. Two Gamma Knives proved what miracles this procedure really is. Radiation for assorted issues helped with pain and extending the time between treatments. Through that time we have had things not work, so we move on and quickly. We have had 32 months together since diagnosis and we are shooting for more.

I love you all and thank you for listening. Of all the time we have been on this wild ride, I must admit, I have never been this scared. I have this sick feeling I cannot shake about the other organs but with okay scans and no symptoms, I need to chill.

Once again hurry up and wait. But with a man like this in my world it is worth every gray hair and bellyache. I never thought I would say this in today's world but thank God I am unemployed, everything else is irrelevant. Toodles for now.>>Believe51

PS: How wonderful it feels to be worrying only about Ed right now, how could he do treatment and visit me in the looney bin at the same time??

[schoolteacher]

Marie,

I am glad to hear from you this morning. I will be praying for the Mighty Oak in the morning more than I usually do. I can hear sadness in your voice along with your fighting strength.

God Bless Bless You and the Mighty Oak. I ask for a miracle for him too.

Your friend,
Amelia

Amelia

[WomanofSteel]

Marie take a deep breath and remember we are all with you and Ed. I will be saying an extra special prayer that Ed's new treatment should be as kind to him as mine seems to be to me. Hang in there honey!

[Pam P]

I am praying that this new treatment will be very gentle on him but kill those cancer cells wherever they're hiding. Yes a miracle is due. I hope Ed can also gain some weight and strength even on the treatment. You are brave, couragous and the best medicine Ed can have. Pam

[pattyz]

Marie...

Two issues that I may have suggestions for, or not... don't know if you've gone over these already with someone else.

1) Wgt loss. My solution has been Megace. A nasty taking liquid that added 10 lbs. to my weight in just four wks.

It used to be the #2 in hormonal tx to Tamoxifen. The dose is small per day, 20ml= one swallow. I make sure I'm ready to down it, then drink water. It somehow also makes the food taste better. To me atleast. Don't know about others exp. I go off and on as my wgt. decrees...

2) Brain mets. Since my current-for-sure 6 have been in slight size progression, I have a folder named: Last Options. Most are oral. Many in studies or trials. There are 7 in that folder which I've faxed to my onc.

I will be adding something in the near future. These six brain mets have been with me, without noticeable symptoms, for four years now. Waited to treat them, yet one more 4! - months this time) until the very day I became 24/7 dizzy. (Only symptom) That began to clear after just about 10 days of my Xeloda/Temodar combo. My onc 'created' the dose and schedule for me as there is no standard.

Forgive me for being clueless: I would send these "Last Options" to you via email if you'd like, or if I KNEW how!! Just say the word.

xoxoxpatty

[Ceesun]

Marie, you, who do so much for all of us are in my prayers and best wishes and of course that goes for our dearest Mighty Oak. Hope the new chemo does the trick for you. You are loved and admired here. ceesun

[Believe51]

Thanks ladies, I knew I could get the prayers and positive healing energy flowing, I just needed to ask.

Patty, the Magace never worked for Ed as well as we planned. I am so happy you mentioned this because it is important for others to learn this name just in case. We have been to a nutritionist in the past also but that did not tell me anything new. My career background is in cooking and baking, and I have always had a weakness in learning about nutrtion.

Nothing has helped. We know how we should be eating or atleast what we should not. Ed has been at the point that the OncoMan and the nutritionist is not too concerned with what he eats. Anything he can get down, even if it is full of sugar, doubled-edged sword if you ask me but vital for his survival. Even in the beginning when he was eating like a champ, all his life actually, he lost mega amounts of weight. The healthier he ate, the more pounds he shed. WomanofSteel, at one point I told Ed we were going to contact Stephen King and ask if Ed could be the star in "Thinner" if he ever did a remake. HoHum.

Some wives might bring home a 6-pack of beer for their husbands.......I bring home Ensure Plus (smiling). Mighty Oak is such a terrific patient and does all in his power. I guess that is why we feel so powerless. Thanks for keeping us safely in the channels of your hearts. Love>>Marie

[Mary Anne in TX]

Hope you will feel this long distance touch on your shoulder, Marie. Nothing can be harder than watching those we love hurt. Ed is so lucky to have you and I hope that you can feel the love and hugs we all send your way lady. Much love and peace to ya, ma

[Becky]

Oh Marie

My heart goes out to you both and all you have endured.

I will keep my fingers crossed on this newest treatment (consider adding the Herceptin back in).

As for nutrition - add secret calories wherever you can. Gravy on meat, butter on vegetables, real cream instead of 2% for coffee or tea.

Make small milkshakes and smoothies. In the smoothie used full fat yogurt (yo baby) for babies. Anywhere you can squeeze extra calories in without volume. Right now its more about calories than just getting good nutrition. Use that blender though. You can whip up some delicious, nutritous, high calorie drinks with it.

Think mashed potatoes too. With the butter and whole milk or light cream - its more caloric and easy to eat.

Cheese too - melt in, on and mixed in. Any types.

Also soup - homemade with lots of veggies and add barley. Just a cup (and you can freeze it in baggies to always have it on hand). Privately email me for potential recipes if you want.

Peanut butter on a cracker or two with sliced bananas. Just 2 crackers. Try lots and lots of very small snacks. A cup of soup - an hr later 2 crackers with peanut butter or full fat cottage cheese, 2 hrs later a small milkshake or smoothie, 2 hrs later a veggie and a cup of mashed potato.

Little bits often might add up and if he is willing to please you, he might take a few bites every hr versus having to try to eat alot at one time.

Love and hugs to you and Ed

[Shobha]

Marie,

Praying hard for Ed and you. You both are in my daily prayers. You give us all so many positive vibes and lift our spirits when we are down.

I pray that God will bless Ed so that this new treatment works wonders and destroys the cancer.

Hugs,
shobha

[Ellie F]

Marie
I will be praying that angels walk with mighty oak today and every day that he needs their help.
He is blessed to have you to support him through this difficult journey.
You are both in my prayers
Ellie

[Lori R]

Dear Marie,
I believe there have been other on the site that have used Ixempra and found it to be just the trick. It is so difficult to change courses but the upside is there is another direction for Ed to pursue.

Ed is so fortunate to have such a wise, compassionate care giver. I pray that Ed is able to regain an appetite and that the treatments go well.

Praying for you and Ed...Lori

[StephN]

Dear Marie -
You know you have only to ask us.
Any many are praying without asking!

Boy, Becky was a fount of snack ideas, and we are a fount of prayers for Ed's treatment to search and destroy!

[Believe51]

Could have not said it better Steph and I need you all to know that we are not discouraged about our choices. I am almost positive that we will be adding Herceptin back into the mix but we must tread easy, I fool you not when I say he is a skeleton. There have been such great results with this drug being used alone which is comforting.

I feel so much better with each passing moment. I always feel so well protected by this family, I have gathered strength from just having you all in my life. How blessed that we are not doing this alone, to have a fort full of warriors treading these enemy lines with us. Cancer aside and the restrictions and battles Ed faces, our life is one of great happiness, a life without regret. I am sure the course of Ixempra, either alone or with the big 'H', OR if we need to change that course.....no regrets.

I shall lead Ed with the feelings in my heart to the future we fight to experience. We shall do our best with the situation at hand and the complications that go along. He is more than ready to start tomorrow and knowing we have researched and assessed his health vs. heavier, more toxic potions......we trudge forward to make history. For each month that he is alive he has already beaten his prognosis and the statistics!

Besides all My Sweets, I know there is too much Hope to give up, many more options. So our story does not end here, it simply gets more interesting. From this day forward. Now we will meditate later and enjoy a tea together. Talk about nothing and know there is no looking back just forward. When and if this treatment works Ed will use all fortitude to break this nutritional issue. Again, an issue of great intensity and almost out of his control. And if it does not work I will jump to his rescue and change the mix.

Thanks for being here at a very large crossroad in this journey. Would never want to do this without this site and its family members. You are a great contribution to the quaility of Ed and my lives. Love>>Believe51

[chrisy]

I never thought I would say this in today's world but thank God I am unemployed, everything else is irrelevant.

Marie, grace does abound and sometimes where we are least likely to recognize it.

My heart goes out to you, and more than anything I just want to reach out and wrap you in loving hugs. Since I can't do that, I will have to settle for wrapping you (both) in loving prayers. I say that like it's a small thing, but of course it's not.

I usually agree with Steph on everything, she got it half right; I think you don't need to ask, you are always in our prayers.

Hang in there, breathe in, breathe out.

Much love
Chris

[Laurel]

Marie,

I have nothing further to add except my prayers and to say that your post was absolutely beautiful. I admire you greatly.

[RobinP]

Oh ,Marie,I will pray for you and Ed, too. I am sorry for your roller coaster ride journey and encourage you to keep posting for support and hope. Love to you and Mighty Oak.

[caya]

Sweet Marie, I am praying for you and the Mighty Oak.

Good luck tomorrow with the new chemo regime.

all the best
caya

[CindyE]

Marie,
I am praying for Ed and you that all goes well. It's in God's hands and I pray that He will grant you both peace and comfort.

[Patty F]

Marie
I am praying for you and Ed. May peace surround you both tomorrow.