TIME TO CIRCLE THE WAGONS GIRLS

NS, can I come to Your place?

xoxoxoxo

Pupster

All,

Warren had his 6th grade CCD retreat tonight. At the end, they passed a candle and each child got to say who/what they would like to pray for. Not surprisingly, Warren's was, "everyone who is suffering from breast cancer." On the way home I asked him if he had my friends on this board in mind (I figured he did as he just received an afghan) and he said yes, but that he didn't know your names. Many kids prayed for a specific aunt, uncle or grandparent, and I have to tell you, at least 80% of the kids prayed for someone with cancer.

Here's the best part (listen up AMY), then he said, "I should have said to pray for that lady in Ohio who has the goat." Ohio, Alambama, apparently it's all the same to us up here in New England. LOL

I can't remember what the post was exactly. It was a poem someone wrote for Amy, before Christmas, and Warren happened to walk into my office and saw that I was a little upset, and said that IF he got a guitar for Christmas, when he learns how to play it, he would write a song for the lyrics and send it to "the lady with the goats."

Now, I'm not completely delusional, the kids was SERIOUSLY angling for that guitar, butit was still sweet. And it just really made me smile that he remembered it.

Good night all,

Colleen

Just a cut-and-paste post....tired and need to make dinner.... 

Quick update.....I spent about 20 minutes on the phone with my Onc today.  Have I said recently how much I love my Onc?  She called me on her day off!  Anyway....she put the brakes on all the tests.  I am going to see her on Thursday.  We are going to review all the scans and she is going to give me her opinion.  One of the ideas I floated is waiting a couple of months and then doing a PET.  That way we would have some time to see if there are any more changes.  That would give us more information than an immediate re-scan.  It would also give some time for these nodes too shrink if their growth is just in response to my having a cold or something.  We are also going to spend some time talking about my pain symptoms and how to address them. 

SO...no real news, but I should have a better idea once I see her on Thursday.  Thanks again for all the hand holding, e-mails, prayers and PMs.  You guys are the best.

Hugs

Deb C

Deb - that sounds wonderful.  I am so glad she called and you got to talk things over with her.  I'll be away but will check up on you when I get home.

Hugs

Liz

I have reported the post also.

That's great Deb - such a nice feeling to have a good onc

Greetings all,

Well, my appt was a waste of time, as they didn't have my final path back yet. "Maybe the end of this week, or if not, definitely next week." (Are you kidding me?) I did learn that it is the standard 6 weeks of daily rads, but he was fairly sure (as sure as he could be with no freaking path!) that I could do the rads here at my existing onc instead of having to drive into Boston every day, so that's a good thing.

The one bright spot was that "in most cases, perineural invasion is associated with a greatly increased risk of local recurrence", which to an extent put my mind at ease. We all know that I am most definitely not a "in most cases" kind of girl, but this time, I'm really, really hoping that the path will be good (so crazy, but you know what I mean, as good as it can be for invasive malignant cancer cells that are spreading!) and at least I will be able to just do rads and then just primarily worry about local recurrence. I asked if I could just have a scan of head for nodes/masses (he could not feel any nodes, but didn't like the fact that I've had pain in the ear and headaches on that side) for my own peace of mind, and he seemed amenable to that, but wanted to wait until final path, which is entirely reasonable.

So, now I need to run out to fax the letter from my insurance company saying there is some problem with the $3120 bill for my genetic testing to Dana Farber. Surprise, surprise, yes this is the same ins co for which they allegedly received prior approval to do the test.

Oh yeah, and my dad was sent from the hematologist (? blood doc) directly to a gastroentologist today as he is still dangerously anemic and "low on blood" (whatever the hell that means) despite the transfusion on Friday. Apparently they are concerned about internal bleeding. He wouldn't allow my brother (who lives only an hour away, as opposed to 5 hours away like my sister and I) to go with him, so we have no idea what's happening. God bless him, the man doesn't even own a cell phone. We are hoping for some answers there as well.

I swear, when it rains it pours. And I'm sorry to be such a downer. I feel like I've been sucking up a lot of support from you all in this past week, so I'm hoping to turn that around and give some back real soon. I appreciate you allowing me to be selfish right now.

xo,

Colleen

Colleen, sending you a lot of cyber hugs.  I work in the research department of a biotech firm so if you need anything researched, let me know.

hello girls deb im praying for you sister i am still fighting this flu but have come to you ladies to ask a favor from al of you i recieved a phone call this moring from sister her only child has breast cancer at 38 years old with 2 small boys age 5 and 1 i am asking you my sister to please keep her in your prayers i know you will her name is lisa thanks and god be with you all love deb from ky

deb, I will keep lisa in my prayers...

hugs

MB

Hello All,

Just wanted to let you know that we deleted a number of posts today. We truly hope that the Circle remains calm and supportive, as it was intended.

We appreciate everyone working together to keep this a safe and friendly environment.

Best,

Melissa and Tami

Deb I too will remember your neice.



Amy

Deb I too will remember your neice.



Amy