Gemcarb girl reports

[Joy]

Happy Halloween to all the ghosts and goblins out there! I chose not to scare you all as breast cancer is scary enough. I hope there is a high cute factor in your neighborhoods tonight. We have a 12 year old pumpkin queen and a 9 year old prison escapee at our house this year. A lot of excitement and orange hairspray and late night sewing lately. Luca has a 7 year old witchy-poo and a 10 year old Bob Marley-lively up yo-self.

I had my 2nd round of Gem/Carb/Herc/Zometa-decadron/aloxi. Is it not amazing how much crap we can dump into someone's body in one sitting? Sometimes just the thought makes me feel sick.

This time was harder than last, which was largely unexpected. *OH* the really good news, however, was that my platelets recovered beautifully (no small prayer of thanks there). So I was able to have the full dose of Gem. That night I was fine, but by the next day-ugh. I felt so fluish (chills pain, fatigue, blah, blah). My body hurt everywhere and I was somewhat nauseous and stayed in bed all day-which i don't like to do, especially since we are having BEAUTIFUL weather.

Then the next day (yesterday) was less pain, but more mild nausea and fatigue. Today is a bit better, but man is my brain fuzzy. I feel so demented and ungrounded. Anyone else feel like that with chemo side effects? Tummy is a bit sensitive too still. I get this other sensation of my guts being filled with cement. It has been awhile since I really felt chemo sick (thank goodness), but man does it bring back memories and emotions. I always get so emotionally tender when I feel like that. Like I am losing this battle. It is far less pronounced when I feel better, but the last few days I have cried on just about everyone. And when people do nice things for me, I just fall apart. Especially when it comes to helping my girls.

So I am feeling a little down about how much more my body can handle before it just gives up. I just start picturing my girls' lives without me. My wonderful man feeling sad and wishing he'd never started up with me. My cats without their favorite pillow (me). My family who has given so much for me to make it and then having to go through all my junk. Then I think I should get my affairs in order-which really would just involve a dumpster.

See what a goofball I am. And despite feeling so lucky as I mentioned before and knowing that I am, I get pretty mad at life sometimes and just really don't understand why. I hate to jinx the goodness as it can always be worse, but da%*it, this feels pretty bad.

I am very curious about Novalis for liver mets and have been looking at sites, etc. I think University of Colorado does this. What I can't seem to find is what determines a patient's eligibility with regard to tumors i.e. #/size/location. I would like to think that if this combo works and we get shrinkage then maybe I could get them zapped and buy some more time. And 'buy' it we do-don't we? Does anyone know that information?

And has anyone ever had a discussion over their CT's regarding tumor related cirrhosis? I have some of that and it scares me.

On a fun note, Luca took me to Steamboat Springs this last weekend for a quick trip. We soaked and soaked in Strawberry Springs-so beautiful. And ate and ate. The drive was beautiful and the weather sunny and warm. And when we were waiting on my platelet numbers he said, "If they are good, we will just have to repeat all that we did this last week on your next week off." Then they came back on the high end of normal so we are excited about a prescription for a cabin in Steamboat-you know the one insurance will pay for? And a lot more soaking in hot springs and dining out. So we got that going for us

Thanks for letting me vent about the same old stuff and I hope that today is full of fun for all!

[doh2pa]

Hi Joy,

My, you are having a rough time, but it makes me smile to see how you are still getting joy (is it the name??) from simple life things like Halloween and soaking in a soothing spring. Good for you. "Life is not about weathering the storm, but dancing in the rain".

As far as your stomach issues, I had Gemzar and Carbo but not together. They were rough enough by themselves. Iloxy did seem to work for me but I still had a lot of acid indigestion with carbo. Have you tried taking a proton pump inhibitor like Protonix to help with the stomach issues? This really worked well for me and there are many of these on the market to try.

I'm about to start Doxyl next week. I was headed to the Phase II trial you just finished, but my liver enzymes are just a little high from the Gemzar so I'll try to doxyl for a few months and then try to switch.

Hang in there. I think if you can fix the stomach issues your overall outlook will be better.

[Believe51]

Thanks for the update girlfriend. You have been on my mind so much lately as you embark on this regime. Not to mention that every time I brew for my famous lattes and my house is thick with the permeating aroma of Italian Expresso bean, I spledor in thoughts of you, Joy.

Any questions you need me to ask Lily for you since she is unable to join the board right now??

If so, send me a e-mail @:
Believe51miracle@yahoo.com

[Rich66]

Yeah, Joy. You are just a goofball..not
I am not clear on your situation, but it's clear multiple diffuse liver mets are the hardest to deal with. Best if you have a lobe or small section without mets. In that case the rest of the liver to a surprising degree can be removed since the liver grows back. There is also an approach where one lobe is starved off. MD Anderson is trying a multistep surgical approach that gradually gets rid of bad liver sections while good liver grows back.
Looks like the various radiotherapy treatments have many similarities. I came across this chart which may have a bias toward cyberknife:
http://www.sdcyberknife.com/comparison.htm

Have you been evaluated for Yttrium 90(spheres) or directed liver therapy such as: http://www.usclivercancer.org/region...motherapy.html

other links to peruse:
http://www2.mdanderson.org/depts/onc...ay/5-08-1.html

http://www2.mdanderson.org/depts/onc...ay/5-08-1.html

http://www.directtherapeutics.com/dti_015.htm

http://www.cancercenter.com/conventi...emotherapy.cfm

http://www.livercancertreatment.org/

[chrisy]

Joy, you goofball, there you go again. You ride the waves from sadness to despair to joy and hope better than anyone I've ever known.

One of the more subtle, yet toxic, side effects of these treatments we do is the number it does on our minds. So even as it is saving us, giving us more time - we imagine it running out. When I was getting T/C/H every Friday, by noon Monday I would be sobbing uncontrollably.

Somehow, Joy, it can't and won't defeat your spirit. Keep working with your medical team to get better management of the side effects so you can hopefully feel a little better more of the time. Then fill up that time with the good stuff.

I also cry when people show me kindness. A friend of mine once told me that when you cry at beautiful music, or in church, that's how you know that God is there. Not all tears are bad.

Sorry, now I'm crying, too - and I'm sorry if my post is not too uplifting - my intent was not to jump in a pity pot but just to let you know I'm right beside you.

I'll start working on finding insurance that will pay for your retreats.

Much love
Chris

[juanita]

if you took pix i'd love to see them. we live out in the country and don't get trick-or-treaters here. and i wasn't home last night anyway, had a sectional football game i went to.

[Jackie07]

Joy,

Thanks for the report. Glad you are doing well. Please keep us posted. I love your writings.

[Lori R]

Joy,
I too live in Colorado and I agree with the beautiful fall we have had. I think this is the first Halloween I can remember for a while where there wasn't snow. It is always so difficult for the little princesses to put a coat on over their glorious gowns.

I am glad that you could be there for the cast of characters!!! I'll bet the sugar driven energy level was quite high at your home.

The future for us Mets gals is an uncertain one (but then isn't it REALLY for everyone??? Even those without cancer.) You've done a FANTASTIC job with the fight so far, so please try to focus on the present / immediate future. I too find that the thing that sinks my balloon faster than anything is worrying about my daughter's future without me. WOW...is that ever an anxiety provoking train of thought that takes me to the bottom of the deepest, darkest place you can think of. So...the extent possible, try to gently guide your thoughts back to the present.

The present is so positive for you. I am liking this guy Luca. Steamboat Springs has to be one of the most beautiful and relaxed places in the state and I am glad that you were able to enjoy. Can you believe I've lived here for 20+ years and I've never been to the springs. I always end up just eating. Hmmmm...

So...focus on that next get away with your honey after this next round of treatment. One step at a time. Take a deep breath. Treasure the goodness provided by others and take it as a sign that all will be right.

Sending you warm, positive thoughts for more fun in the immediate future!!

Love, Lori

[freyja]

Thanks for that report, Joy.
I'm relatively new to this group so you're probably not familiar with me, yet...but I relate to some of what you're saying. I've had four out of six of my TCH treatments, and the first half of my chemo I have been the positive, inspiring, determined patient, busy active mom, caring wife.
This last week I caught a cold on top of some heavy side effects, and I've been so low. My mind wanders to some dark places. Then I go with my 5 year old to the in-laws place in the woods by the creek and sit by the campfire and listen to my son's stories and come home and my husband wraps me up in his arms and takes me out to eat.
Then I realize, this is really scary for everyone around us, and they are depending on us to stay positive and hold onto our hope, determination and will...not that we really lose it, it just gets a little clouded over sometimes with waves of fear, insecurities, dispair. I think it's healthy to recognize those waves, and then remember that's what they are...waves, and they will pass, and we'll soon be in calm waters again.
It kida reminds me of being in labor and one contraction seeming like it's just to much to bear, but then it's over and I realize if I can get through that one I can get through another one, step by step, one moment at a time, until before you know it, you've accomplished a miracle.
Now we're giving birth to ourselves. It's scary, because we don't know what this new life will be or where it will take us, but it can also be an exciting opportunity to discover things about ourselves and our lives that we never would have otherwise.
We are women, mothers, sisters, warriors...we can do this.
Love, Celeste

[Bill]

Hey "little Sis"! I wish I could comment on everything you've posted, but I don't have as much energy and fire as you do, sorry. One thing, though, Luca is NOT regretting having "taken up" with you, for sure. You are an awesome woman, and I can assure you, he is there because he loves you and wants to be there. That is one worry you can scratch off of your list. Hey, I've got a great idea, instead of worrying about whether Luca has any regrets about being with you, let's worry about where we are having Easter dinner. We have too many options. Like I told you before, honey, Luca checks out good.

[Joy]

Thank you Bill, that meant so much to me coming from you. I really mean that and I hope you are doing well and enjoying the Autumn. Always so good to see your name around here!!!