Has anyone started a forum for Chemo in Dec 2008?

Firni, I have been doing amazingly well at not looking online about trying to freak me out! LOL! You are right a chronic condition that could mean surgeries after surgeries would not be great, but hubby says it's better than mets! I am really learning about trusting God right now, he has a plan and it's the prefect one for me. That's all I have to hang on right now so no matter what, I will be ok.

Caroline, I'm glad you are just putting your trust in the Lord.  Really, what happens happens.  Not much we can do but get thru.  And good for you for not looking up a bunch of stuff that will just scare you.  You and Busqueen are an inspiration to all of us!!!!

Caroline ~ Yay! for a full night of sleep.:-)

I got a port put in this past thursday.  My veins are such a mess that even a simple blood draw would turn into a traumatic event.  My onc finally called yesterday to say that the new spot{s} on my right leg are definitely cancer. Duh. I thought we had already established that fact.  So anyways, I have an appointment Wednesday morning to decide what to do next.  My left leg is starting to hurt again, so I have a feeling those spots are acting up.  I have a feeling some chemo is in my not-so-distant future.:-(  Strangely enough, the thought of that doesn't terrify me.  I think I just want to do whatever I can to keep this nasty stuff out of my organs.

I hope all of you have a great weekend!  Love and peace to all of my sisters.:-)

Busqueen, sorry to hear that chemo is again in your future. We're here for you!

Thank you for your encouraging thoughts and prayers.:-)  I don't know for sure yet that I'll get more chemo, its just a 'feeling' I have, and so far all of those 'feelings' I've had through this whole experience have been straight on.  I think my onc might give me the choice to do chemo or rads plus additional hormones.  And I would choose chemo.  Because I will do anything I have to do to keep this crap out of my organs for as long as possible.  If 6 months of feeling icky gives me even 1 or 2 more years, then its worth it.

Caroline ~ how are you feeling?  Any luck with your phone calls this morning?:-)

Well, it's official, I talked to the nurse this morning, I have Melorheostosis. She said pathology was cut and dry, no need to send it out for another opinion. I should get the report within a couple of days. I still have 2 weeks before my follow-up for the dr to explain it all to me and I'm not allowed to walk on my foot before my follow-up so it added another week of no driving. Although, I'm getting another boot tomorrow that will allow me to walk without crutches, so I'm finally regaining acces to my hands, It will be nice to be more mobile. I'm not sure how to take it, my friend was shocked I wasn't happier it wasn't cancer! LOL! I am, but at the same time, I wasn't expecting to get a weird rare disease that would affect me for the next 50+ years.

Thanks Mandy

I just got back from the pharmacy and got a cam walker. It's alike a full airwalk boot. I can finally walk around the house without crutches I'll still take it easy and do the same amount of walking as before and stay off my feet to let my foot heal properly, but it's so nice to be walking without hurting my armpits and being able to carry items. I am thinking about getting a walking cane though, it would have been really helpful the past few weeks to help take pressure off my foot. So sad, walking with a cane at 35!

Oh Hell, Carie, that just sucks.  But if it keeps that monster at bay, then that's what counts.  You are in my prayers daily.  

Caroline, glad you're back on your foot so to speak.  A cane is no biggie. And it wouldn't be forever, right?  You might even heal faster if you kept some of the pressure off of your foot.  Hey at least you don't need a walker.  Hmmm  If you used a walker, you could always have a chair with you.  And a little basket to put things in.

Ah, Carie, sorry to hear about chemo, but chemo works so we'll pray it will knock all those cancer cells down.

Well, I'm not worried about a cane, I still think it sad I'll need one. I'm ok now with the boot, I'm thinking down the road, when it flares again. And I did see that they make colorful cute ones, my feeling about things like that has always been "if you can't hide it, make sure everyone can see it!". Had I needed more LE sleeves, I would totally get the Lymphedivas one, so I'll probably end up with a bright pink cane or something like that

Where did everybody go?

Caroline, how is your foot feeling?  I hope it is much better.:-)

I start chemo on Thursday.  I will be getting just taxotere, once a week for 3 weeks, then 1 week off.  We will do that 'cycle' 3 times then do another scan.  If things look good I will continue with the taxotere, if things look worse we will try a different chemo.  So I'm getting the feeling that I will be getting some kind of ongoing treatment for the rest of my life.  Dramatic sigh. But I think this chemo will be easier to deal with, and I won't have the stress of feeling like I need to get back to work.  I know what to expect and I know how important it is to get the rest I need.  I'm going to try to walk everyday and cut back on the sugar and stuff.  I've lost 63 pounds since I finished chemo last time, and I'm hoping to prevent any of those pounds from creeping back on.

I hope you are all well.:-)

Sorry Carie, we'll have to pray that chemo takes care of the cancer and no need for plan B! And yes, get some rest, weekly chemo might get rough so don't feel bad if you just watch movies on the couch every once in a while!

My foot is doing well. I get to remove the bandage tomorrow.. woohoo!! I'll be able to wash my foot Now, I still have a week before I meet with the dr so still one more week wearing the big boot and not driving. I finally got a copy of my path report and he will have to do some serious convincing about the melorheostosis, all that the path report says is "sclerotic bone". I'm not sure yet how I will present my doubts, I don't want to to think I'm questionning his position. Otherwise, I'm doing great, the boot has been so helpful all week, it was well worth getting it.

Love to all my bc sisters! xo

Sending hugs and love to all my sisters on this board.

Mandy

Carie,

Sending you a hug. Hope all went well.

Mandy

Hmmm.  you kind of forget about the real experience of chemo after its all done.  But ya, that funky feeling, the Decadron buzz and the headache.  Blech.  Hope you're feeling better in a couple days.  It seemed like day 2 was always my worst.  Then by day 4 or 5 I was feeling more normal.  I am surprised that your PS didn't have you checked for the pain.  I guess they see a lot of whiners and just brush it off as low discomfort tolerance.  An MRI would have been nice tho.  Not that it would have changed anything.

I think our weather here is going to be in the 60s and some rain.  Starting to feel like fall.  Finally.  I have way too many hot flashes to enjoy the summer heat.