Starting Chemo in JAN 2007

Jan try not to be too worried - (although I am plenty worried).  As I recall, I think Tina's DH Paul said in one of the emails to Rebecca that he would try to send out some information Monday night (that's tonight).  Remember Tina was scheduled for that heart MRI today, and the big gun doctors are probably all in today, so hopefully she's had some more tests and consultations...

Jan I also was thinking we should concentrate on the book idea and try to get it published in time for Oprah's show next October for Pink Boob Month- (and I am serious) - Skye, does this work timeframe wise?  I mean about getting a book together to be ready to release next October - would that be possible?

I also like the name The Campfire Girls - but I think we would would need to have something in the title indicative of our situation? - like the The Cancer Campfire Girls - and who knows if the Campfire Girls have a copyright on their name?  Again I am just surmising here... Jump in those who know...

Just a thought...but I think that getting together in person might be helpful in getting the book going.  Brainstorming in person might provide us with some inspiration, for one thing.  Meeting might bring into focus how much we have supported each other, what a difference our support group has made in our individual journeys. 

I don't see how we could get a book done and out before October.  I don't know anything about it, but I just don't see it happening.  But that doesn't mean Oprah wouldn't want to have us on anyway - what a great breast cancer awareness show that could be.  We might want to get going on pitching that idea now, as I'm sure her shows are planned well in advance.

Sure wish we'd hear something about Tina.

Congrats Rebecca on your good mammo results.  I'm relieved for you.

That is good news - but still very scary also! Tina, I am so relieved to hear that you are continuing to get stronger.

Tina, great news you are up and walking around. We hope you can feel our positive energy...keep getting stonger!

love and hugs,

Lynn

Very relieved that she is getting better, but it is also very scary to think that her ejection fraction was so low - those numbers really bring home what a serious event this was and is.  Anyway, Tina, we know you're one tough lady, so take care of yourself and rest and heal, and feel all the love heading your way from all of us, all across the US and Canada.  I'm glad the news today was good, relatively speaking.  Don't wear yourself out once you get your laptop, but it will certainly be good to read a post from you!

Nancy, I hope you are doing your best to keep that arm elevated, as well as wearing your sleeve.  Is it any better, yet?  I know that it is very hard for me to not lift heavy things, not carry my purse on that arm, not do everything I want or need to do, or used to do.  So this is a good warning for me, and I hope it is for you, also.  Lymphedema is nothing to fool around with - I have a friend that has it and I would hate, hate, hate to have it too.  So I'm going to try extra hard now to be good.  Thanks for the warning, and I hope you're better.

Hi all,

Good news about Tina, you are in all our prayers, to continue to get stronger each day.

Congrats Rebecca on the clean Mammo.

Jan great job on the google page.

Hugs to all...Joni

ps:  my bone scan is on Thurs Dec 6th, and they haven't confirmed the MRi date yet.

Tina, thank goodness your ticker is beginning its upward climb back to normal pumping! I'm praying your doctors are guided to do exactly the best and right things for you. And you are eating and walking around, yay! Thanks to Paul for the update, and can't wait to hear from you later.



Nancy also am concerned here for your arm. You need to rest and protect it! If mine hurt at all, I don't do anything with them, I even ask for help at the grocery store unloading the cart.



Debbie my mammo is also Thursday, we can keep fingers crossed for each other.



Caya I don't think we need to worry about copyright issues for Campfire Girls if we just use it for a group forum name. However now that you mention it I CAN imagine some little Campfire Girl googling the name and finding our discussion on mastectomy drainage tubes. So maybe we should modify it a bit. Instead of putting the word 'cancer' in front of it though, maybe we could think of something more funny and positive. I don't think we'd want to use it for a book name because while you can't copyright a title, they do have it trademarked, I can guarantee, and that is a different thing.



As for getting a book out by October, it depends entirely on the process. I think since we are using our posts for the main body of it, that it could be written before then. Getting it printed is another matter entirely. If we went through getting an agent and a big-time publisher, the time frame is probably two years. Small publishers can work more quickly but still can take a year or so. Self-publishing can be done very quickly but we wouldn't have distribution. Also, know that if you go with a publisher, they can title it anything they want to. So there are lots of pros and cons to think about, we can do that on the Google group.



It's a beauty of a sunny day here but we are about to get clobbered again with six inches of snow. So far I'm not pleased with this winter. - Skye

Wow Jan that is hilariouss!  What a tolerant teacher, and what a GORGEOUS dog.  I am sure your pooch will make you proud.  make sure you report back!

Jan,

Em is beautiful. The kids are going to be so excited- it reminds me of "Mary Had a Little Lamb."

Please let us know how it goes. Here's hoping for a great performance.

The google page looks great. Thanks for setting it up.



Okay, I have to get a few errands done-it is soooo cold and windy here but I have to take the plunge- my fridge is practically empty. At least it is not snowing. - time for scarf, gloves, hat and nice warm coat.



Tina,

We are thinking about you with positive and warm thoughts. Hugs to you.



Viddie

Whew…finally a moment to sit and write a post! 

I have had so much going on that it has been hard for me to find the time to articulate it much less endure it. 

I think I had a really bad case of “scansiety” (do not remember who coined that term, but it just sooooo perfect) and true to form I did not even realize how badly I was freaked out until it was all over and I felt better by comparison.  I really think that getting the immediate feedback of the diagnostic mammo instead of a standard screening one made all the difference for me and my sanity…..I am not sure I would have been able to hold it together if I had to wait for a letter to come in the mail.  Having the clean Mammo also makes my MRI next Monday a bit less scary….I am sure it will be clear as well.

Owen has been driving me to distraction as he is going through a rather unpleasant phase just now.  He seems to find it very entertaining to skulk around the house and find things that he can either take apart, drop on the floor, shred, or spill.  Failing that he finds the nearest available critter and harasses it until the poor thing is hiding under the couch (dog) or scratching him (Bella).  He can not seem to remember “the rules” anymore, and repeatedly does things that I have asked him not to do and/or punished him for doing.  For example, he has a very hard time leaving his toys at home when he goes to school.  I ask him if he has anything in his pockets, but he lies to me with a perfectly straight face, and I actually have to FRISK him at the door of the preschool to make sure that he is not smuggling little plastic gems, coins or action figures into the school where they can pose a choking hazard to some of his younger schoolmates. 

AAARRRRGGGGGHHHHH!!!!!

 My more experienced sisters….please tell me that it is a phase and he will grow out of it!  I am about read to ship him off, but unfortunately I could not find any takers.

So a few weeks ago I spoke to the billing person at my PS’s office to straighten out once and for all how much money I was going to have to pay him for my various procedures and office visits.  I have already paid a chunk, but we were waiting for the insurance to finish filtering in before agreeing on a total.  So we went over the procedure codes that were covered and not covered, negotiated and settled on a specific sum.  Last week I cashed in my “rainy day” fund, and used just about the entire (rather paltry) amount to cover a check that I then sent to my PS…for the full amount of the agreed upon sum.  I got a call yesterday from the billing office, during which I was informed that THEY made a mistake in my account and the amount that I sent is not likely to be sufficient.

I started to cry

“I have already given you the sum total of my savings” I told her.  “There just is not anything else for me to give you!”

She responded by informing me that I could work out a payment plan “$500 a month would work nicely” she says.  Veeeery sensitive.  I responded that if I could afford to pay her $500 a month, my husband would not be driving a 1990 volvo station wagon!

SO I called the insurance company, and they told me that the reason that the procedure had been denied was that they had “corrected” the claim by bundling the (denied) procedure with a different procedure that HAD been covered.  

The procedure they denied was “removal or revision of intact mammary implant”

The procedure they approved was “insertion of mammary implant”

I said to the lady “that makes no sense….the Dr had to REMOVE the tissue expander in order to place the implant in there, so they are two different, and necessary procedures”.  To which the lady replied…”Well, that is JUST what the Dr said!”  

DUH.

So she sent it back for reconsideration, recommending that it be paid.  I hope that they pay it, because otherwise I think I am going to have to pay the full balance

I am just so sick and tired of this stupid song and dance.  This is the guy who assured my DH that he “takes care of his breast cancer patients” and that we need not worry about how much it was going to cost.  I think wiping out my savings is FAR from taking care of me……I have made a command decision, and have decided to fire my PS for being an insensitive, lying toad who really did not do a great job on my reconstruction anyway.  I have found a PS practice that is in-network for me in a nearby town, so I think that I will go there for a consult to see if they can sort out my boob issues.

The worst part of it is that it seems like such a big deal when it is going on, but now that I have written it out and looked at it, I guess it is really not such a big deal after all.  Life will go on….my PS is a jerk with a fetish for big boobs and bigger bank accounts, but I am not permanently harmed just inconvenienced and not terribly wealthy.  I am, however VERY rich when it comes to what is important, and that is the love of my family and the awesome power and indescribable sweetness of my friendships.

Sorry to dump all this negativity on you guys….GROUP HUG!

Tina I hope you make it onto the board at some point today….I miss you terribly, even though your excellent and devoted husband has kept me well informed.

Hallelujah!  I am so glad to see you posting Tina! 

You had us all so worried....Welcome home.  You are NOT to step foot out of that hospital until you feel comfortable to do so.  I am also glad that it is such a positive experience there.  Much love and many hugs.   If you get your laptop by later on, try to get into the chat....we will be shooting for 9PM EST. 

I may or may not make it...tonight is the first night of Channukah, and we are having a little celebration...candles, latkes and jelly donuts for all!  Hope the rest of my jewish sisters are having a nice night as well

YAY TINA!  Soooooo great to hear from you...wow, your entire ordeal is pretty scary.  Kind of scares me for my surgery, but I didn't have AC (Onc had me do TC) and I didn't have Herceptin, so I'm assuming my heart will be ok.  You sound really upbeat, hope that continues and you keep getting stronger and better!  We love you and miss you tons!

Tina,

I'm sitting here crying, so glad you're back online.  Stay there until they figure out what is going on.  I know my doctor prescribed Epirubicin for me instead of Adriamycin as it is easier on the heart (not much, but every factor counts).  On Larry King last week, they had Wayne Newton on, and he is currently going thru something very similar, Cardio Myopathy brought on by a virus. 

Lynn,  what day is your surgery again?  Is it on Dec 12?  I can't remember chemo brain.  Anyways, you WILL be fine, we don't want any more scares.  My friend here in Calgary had her reconstruction 3 weeks ago, and she is doing really well.  She had her other breast removed at the same time, I'm not sure if you are doing that.

I went into the office today and had lunch with all my co-workers.  It was really nice, but boy oh boy, parking for 2 hours in downtown Calgary cost me $16.00.  That's just crazy.  It's so dreadfully cold here, I just can't believe my ancestors picked this part of the world to live in.  I think because they were from Scotland and Ireland, and they wanted to be just as miserable here as they had been there....hahaha.  Why couldn't they have picked Australia or Tahiti or someplace like that.

I think the title of our book should be something other than the Campfire Girls, because it doesn't really represent what we went thru.  I think it's very cute for us to use that term, but I agree with whoever said that if someone googled it, they would be pretty amazed to see we are talking about mastectomies, chemo and rads.

I have to apply for CPP (Canada Pension Plan), Manulife my insurance company is making me.  Oh well, more forms to fill out.

Jan, your dog is beautiful, and I love her name "Em". I hope your little girl does really well at Show Off time.

My kitty RC has not been very well the last few days.  She is 16 going on 17 and she is having trouble eating lately.  She also doesn't like the cold weather.  Thor is back to being my big "healthy" boy.  He's feeling lots better, but sometimes he gives me such sorrowful looks because he can't have any treats anymore.  He's on a special dog food from the vet.

Anyways, see you all in the Chat tonite.  Should be fun.

Big hugs to all...Joni

Tina, It's good to see you around. I'm glad you got a little shopping in even if it was just the Hospital gift shop. Keep up the work of healing. Rest when you need to. I went with my neighbor today to a diabetes Class at a small branch of Seton Hospital. During the break I went down to the gift shop for coffee. They had some neat stuff there. I might actually get more than coffee next time I'm there.

Rebecca, your stories about Owen are so funny. I get him confused sometimes with another on line friend's 3 year old boy. She has some good stories about him and her 10 year old daughter, too. I hope Owen gets better before he turns worse as a teenager.

Skye, sure we can be mammo buddies on Thursday. I'll be thinking of you, too.

Jan, I hope the dog behaved at school. I did a demo in English Class in 10th grade where I had my cat "beg" for cheese. I let go of him once and nearly didn't get him out from under a desk. My mom was kind enough to deliver him before class and pick him up afterwards. Let's just say my demos with inanimate objects worked better than that one with the cat.

Nancy, I hope your swelling goes down. These things have a way of sneaking up on you when you least expect them.

I'l try to make chat, too. I hope I remember. Otherwise, I'll see you soon.

A follow up to my dog post. The dogs name is "Storm" my daughters name is Emily and we call her Em. Guess I was typing fast and didn't make that clear.

Joni - I'm glad Thor is better and I hope the kitty gets warmed up and feeling better soon too.