Thursday, January 22, 2009

First Support Group

I went to my first support group today and everyone had stage IV breast cancer. I had the newest diagnosis and two of the women were diagnosed over 10 years ago. I was also reminded by an old friend woes mom fought it for 10 years with so much courage. All these people give me hope and strength. They all were excited about my stories of CTCA. They couldn't get over that Travis was so included, that my doctor spent over an hour with us, that i have his cell phone number, and that several of my side affects are already better including my energy just from supplements.

Although i will have this forever, so do people who have diabetes. I think the thing that is so frustrating is the days i feel good i get so excited that i might be "normal" again. Then i have my bad days and dread that this could be forever. It is difficult to get into a routine. For example, I can't just run 26 miles when I feel like it. I have to keep up with a schedule so i don't hurt myself. So if i miss three weeks of running, i cant just pick up where i left off and that is very frustrating. I am working on being flexible with myself, but cancer is getting in my way.

As for that pathology report...apparently Emory never did the tests on my biopsy to see if i was actually her2 and er/per. So my doc at CTCA he order that tissue be sent to him and they are going to do the tests themselves. Very frustrating.

We are on our way to a comedy show tonight to support a new friend that we met at CTCA. He is an attorney and a comic, funny in itself.

7 comments:

Robert said...

I am so glad you guys found CTCA and it turned out to be what you were hoping for. Sounds like they are totally patient oriented... not to mention on top of things. It's really surprising that Emory seems to have dropped the ball with the pathology report.

Try not to get too down about an occasional change in routine. I can tell you, turning 62 has a similar effect. "Normal" is a relative term... most of us aren't exactly normal to begin with!

Have fun at the comedy show. Catch you again soon.

We love you,
Robert

Robert said...

P.S. High fives to Travis!!!

Lowa said...

so I am curious, did you confront your doctor about what you learned at CTCA? if so, did she have a response?

Laura said...

I still need some more info such as which sample they are talking about because I have had two biopsies at two different hospitals. I do see my current doctor in Atlanta on Thursday and I am curious to see what she thinks... She is still negligent for not confirming the path report and only relying on the summery from the surgeon, but she never did nor ordered either biopsy.

Julie(t) (Coberly) Farmer said...

i hope the support group helps. i tried several before i found one i clicked with and then went to that one for over a year. it helped a lot. i still keep in touch with some of them! hugs, j

Unknown said...

Hi, Laura. Just wanted to let you know, in case you haven't seen it yet, that I sent an e-mail to your home e-mail address re: something you mentioned in your blog.

love,

Karen

Julia said...

I'm an endurance athlete also Galloway run/walker diagnosed with BC in 2007 at Emory --or should I say misdiagnosed? Emory path failed to find micromets in my case. I fled to HOPKINS where I underwent a (hopefully) life-saving bilateral mastectomy instead of lumpectomy recommended by Emory. Shame on GA for not having a Nat'l CAncer Center and quality care. Most cancer patients "with means" go elsewhere. Yes, there are good docs at Emory but organization communication/back office support is lacking. Happy you've found reliable treatment. Not testing for HER-2 neu is negligence IMHO. btw, I walked the Nat'l BC marathon in JAX w/galloway and will do your race after reading about it in newsletter. Hope U take comfort in those supporting you! Feel free to contact me. Julia