It's the Big R now for me - UPDATE

[Bev G]

Thanks, guys! I've been on both 5fu and Irinotecan - just not together. One thing I'm really glad about is that it's an option and I don't have to do Oxaliplatin and Irinotecan which is another combo my onc mentioned. My immediate reaction to that was, "OH MY GOD!" I'd have to think long and hard before I did that one. I had no QOL with the Oxaliplatin. I still have gloves in my purse from that experience.

Believe me, I truly appreciate all the support, love, prayers, and encouragement. This has really hit me hard. I think it's the shock of new tumors and how fast they've grown.

God bless,
Guinevere

PS- Jeanette, thanks. I told DH that at least this time I'm going into chemo with really good red and white blood cell counts! Hopefully, that will stay the case for a while. Oh yeah...I just remembered a side effect I had forgotten about with the Iri - hair loss...oh joy...

Gwen, I know this is not true for everyone, and I know I didn't have much of it, but my counts were always fine on the FOLFIRI/Avastin. Had a couple little issues with the Avastin that were easily controlled. I never even needed a shot of Neulasta. xxox

[michelle c]

I'm sorry to hear your latest scan results. I hate that you have to go through this. I hope and pray that your new chemo regime knocks them down! I know that you're doing what you have to but you are such an inspiration to others and so generous with your caring ways.

Love and hugs,
Michelle xox

[michelle c]

Funny that you mentioned The Brady Bunch. I was watching some episodes with my daughter just today - school holidays here. She has all five series on DVDs. I used to love it as a kid. I've seen every episode a 1000 times! I know it's a bit corny but still quite enjoy watching it - It's light hearted and kinda makes me feel good to watch it, if that makes sense. I especially love Alice.

[jeanette57]

gwen
I hope they give you Erbitux - it was the cancer CEA drastic downward killer. My CEA dropped fast. The worst the rash and it was BAD the lower my count went. The blood is not so much the red and white is the total loss of Magnesium (spell)) - FOR me I have to get IV of the stuff as it STRIPPED it out of my blood. When the Mag went down the Potassium went way up so who knows.

I am off for the chemo bomb today. It will be interesting to see what I get today as I felt good so may have retained some MAG from last week. Just had a good breakfast and ready to rumble that than cancer! Now if only I could cure the GI blues. Not winning that fight even with Imodium added to the Atonphine.

[Guinevere]

Thanks, guys! I've been on both 5fu and Irinotecan - just not together. One thing I'm really glad about is that it's an option and I don't have to do Oxaliplatin and Irinotecan which is another combo my onc mentioned. My immediate reaction to that was, "OH MY GOD!" I'd have to think long and hard before I did that one. I had no QOL with the Oxaliplatin. I still have gloves in my purse from that experience.

Believe me, I truly appreciate all the support, love, prayers, and encouragement. This has really hit me hard. I think it's the shock of new tumors and how fast they've grown.

God bless,
Guinevere

PS- Jeanette, thanks. I told DH that at least this time I'm going into chemo with really good red and white blood cell counts! Hopefully, that will stay the case for a while. Oh yeah...I just remembered a side effect I had forgotten about with the Iri - hair loss...oh joy...

Gwen, I know this is not true for everyone, and I know I didn't have much of it, but my counts were always fine on the FOLFIRI/Avastin. Had a couple little issues with the Avastin that were easily controlled. I never even needed a shot of Neulasta. xxox

Avastin didn't do anything for me so I don't have to deal with daily headaches, nose bleeds and jaw pains. Praise the Lord, I've never had to ha e the Neulasta shot either. It got close before I went on the chemo break. My RBC count went pretty low too. I don't think my counts had gotten back to normal before I started chemo in September 2011 and so I was always running behind, I guess. The Stivarga didn't affect my counts so I'm good on those scores - at least here at the beginning.

Jeanette, I was on Erbitux from June 2012 to June 2013. It shrunk the main tumor a little and later kept stable but quit working when I went back on it in March after my chemo break.

I think I've identified one of myriad of emotions that's been roiling through me - sadness. I guess I'm sad for myself and that's new for me. Mainly today, I've just tried not to think about it and have had a little success, thank God.

God bless ~
Guinevere

[jeanette57]

Guinevere

Sadness is a positive thing! Feel it and move on! Hard to do! Please don't get mad, but this is my opinion! This will sound odd, but I think my mission in my death is to lead, show, bless, fearkilling, and all those words I am not good at writing. I don't know how this sounds but MY death journey is showing in grace and belief - that death is not the end, the great fear. PAIN - big time fear, but death not. WHY; I guess I am spiritual. I have faith NOT religion, but a positive belief- I believe in ONE God, he/she may have many names, many people pray to those name(s). It is something I just feel. I am not brave, but I see and hear this stupid theme....how powerful I am under this monster, how strong I am in this journey" hum, wasn't just me- Cancer do NOT own my soul. My little light of God. I hum some kids song I learned ...this little light of mine.... etc.

Now great readers, not a good bible reader, go to church - love the messages but we use the bible as a guide - not law. So stating this - this next part is crazy. I was given a small white soapstone at Easter, blessed by the Jewish - some type of marker from the area Jesus was buried. I was told to hold it in a quiet place. Wow, the word SILENTs was given to me over and over until I thought the chemo drugs were ruining my mine. Ok, so I turn off any noise in my house, car and listen to the silence. It has become a friend now. I understand this lesson almost completely. I went from "grateful, to silence - now the out of the blue the came another word.

[jeanette57]

""" I was given a small white soapstone at Easter, blessed by the Jewish - some type of marker from the area Jesus was buried. I was told to hold it in a quiet place. Wow, the word SILENTs was given to me over and over until I thought the chemo drugs were ruining my mine. Ok, so I turn off any noise in my house, car and listen to the silence. It has become a friend now. I understand this lesson almost completely. I went from "grateful, to silence - now the out of the blue came another word.""

The word was DISCERNMENT - wish I could understand this - closest I get is John 7:24. The quote goes some thing like this=== We can either use our power of judgment to look at things from our human consciousness and declare them "bad", wrong", or such condemnation, or we can follow Jesus' teaching that we do not judge by appearances with right judgment.'

I am not sure how to do discernment, but Gwen, I think it means let people feel the "true" feeling. When you are sad, be sad, when you feel anger, or love, feel it to the max. I personally had a life of stuffing my feeling - I now try to own them. I am still scared of my rage. I am letting only tiny safe amounts go. I raged against my cancer. Now I am using it to learn the lessons I can while I have this time. I woke up in this midnight - with a need to say the word, pickup the strange card from Charles Fillmore and learn this new concept. hugs to all on this interesting journey called life

[Guinevere]

Thanks, Jeanette and, believe me, I'm not offended. I think I was surprised that I could feel sad for myself. Lord knows I feel enough sadness for other people.

Your speaking of silence made me think of last night as I lay on my daybed, due to insomnia, and listened to the breeze make the chimes outside gently tinkle. That was the only sound for a while. Such a soothing sound! I did finally go to sleep between 5:30 and 6:00 and slept until about 9:30.

Discernment usually means using the wisdom and the judgment we have learned in our walk. Like I used to tell my boys, "Time and place" and I get so tickled when they parrot it back to me!

I so appreciate your post.

God bless ~
Guinevere

I finally figured out how to put UPDATE in the title of the thread. I think I see a nap in my future.

[jeanette57]

Guinevere

Thanks, chemo was really bad with way to many steroids so I have only had a few hours sleep in 48 hours. I don't feel tired, but my body is walking like a drunk sailor...hum! Silence has been the hardest to learn, I turned off everything and listen to source.

I just sent my pastor a letter reply - I feel ok, I am not feeling bad, I am learning my lessons but the by product is not making me happy. I can't explain well but there is a veil when I close my eyes some times and it is filled with faces watching me. Some beautiful, some animals watching (hope it is those on rainbow bridge) and some so horrible Hollywood would make a fortune.

I have asked them to leave and have done the sage burn, sweet grass, had my house blessed but some time the light one are a bit to pushy. It is like looking at hundreds of faces through the finest of flesh color silk. not fun - Guess saw a video on Abraham in lady called Hicks. Freaked me to no end. great message but not my style of delivery.

hugs, trying to go back to day bed and get my feet back up. so sore! you know.