Friday, January 16, 2009

Last Day

We have had an incredible week. We met so many people that have similar stories of doctors that don't give them all the info, aren't willing to do the tests they want or even worse is how their issues are just dismissed. It is extremely frustrating to hear so many people that get screwed by the system. That is why i am so glad we decided to come. Dr. Citrin said that what we have been doing is correct. He tapped on my liver, measured it, and did blood work and said it was all positive. They will do a PET scan in a few weeks and I will come back up here the end of February to get my results. Then we will really know how well everything is working. If not he has two studies going on i could try.

The naturopath has been my saving grace. She gave me several supplements to help boost my immune system, increase iron, D and B6, help my guts function better, and two that will help with my hand/foot issues. I love that everyone here has multiple degrees. My doc has a MD and PhD, the naturopathy is one of 6 in the nation that is an oncologist/naturopath, the CEO has a MD, PhD, and MBA. Even the mind/body person has her PhD.

The really weird thing that happened to us yesterday is that our doc here cant find from either of the hospitals in Atlanta if i am actually Her2 + and I have been told this entire time that i am estrogen -. The report he received from Emory is that i am estrogen +. He is eagerly trying to track down these results since this would change my course of action. The report stated that they "ASSUMED" that i was Her2 + and that is what really concerned my doc here. Emory still has tissue on file encased in wax to retest if need be, but a little disconcerting. These are the kind of stories we have heard over and over from patients here. "This is crazy, this is crazy." If you don't know this quote, you should really see Vacation a few hundred times.

If you haven't guessed, we decided not to go into Chicago today due to the sub degree temps. Just walking across the street is almost unbearable. Our boogers froze in our noses, our ears under our hats were freezing and my eye balls were stinging from the cold. These people are crazy to live here and the Flemings (my other family), you are all crazy to have lived in MN for 10 years. I really do not know how you did it. We are going stir crazy after one week. Michigan Ave will have to wait until our next trip. Sammy wanted me to take pictures of the American Girl store here, but i am not sure hypothermia is worth it.

One last note... we spoke to the insurance company to see if they would make CTCA in-network and they said no but I could go to their "Centers of Excellent" instead. These include Sloan Kettering, Moffitt, Mayo, Northwestern, etc. and i finally said all the people at CTCA have been been to these places and are now here. I know there are other great cancer centers, but this is the only one i have found that integrates alternative medicine by licenced doctors and where they all work together. Before i sat down with three different people yesterday, they had already heard about the "missing file." I was also held up in Dr. Citrin's office due to the confusion of the "missing file" and the nurse called my next three appointments to let them know i could be late. I saw the next doctor one hour after my scheduled time and she still made time to see me. I love that.

I will have to tell you the rest when i get home. We are off to qigong.

Love to you all,
Laura

8 comments:

Unknown said...

Laura - I'm so happy that you and Travis found this facility! It sounds like they really have their act together, unlike what you've been experiencing heretofore. And your experience just cements my feelings about insurance companies. Bet if the insurance company's CEO's wife was faced with your situation, they'd make that facility in-network in a heartbeat.

Coincidentally, I received an e-mail from a friend forwarding pictures of the snow in Chicago (her hometown), and when I responded that you and Travis are there now and told her why, she asked me for the name of the facility. Turns out her sister has stage IV brain cancer. I'm not sure whether the sister lives there now or not, but my friend has forwarded CTCA's URL to her to check into. I was so glad that I had mentioned your trip to her. She sounded very excited at the possibility that her sister might possibly benefit from treatment there.

Stay warm - as best you can - and have a safe trip back to Atlanta. I know you're anxious to get back to Sam and Gavin! My love to you both and I hope to see you soon.

love,

Karen

Temple said...

If all these people are so brilliant, then why the hell didn't they build that place in sunny Florida or something? Just kidding.

The whole vibe of your message warms my heart - I am so glad you guys made this trip. I've seen documentaries about places like this and it's frustrating to hear what people go through and then how magical these alternative centers can be - even just on an emotional level.

Travel safe. Big hugs.

Robert said...

Wow, sounds like you guys have had a pretty interesting trip... lots of encouragement, a few surprises and a little frostbite for good measure. Your and Travis' posts on your blog since you've been there have been great! Sounds like everyone is totally patient/family oriented and accomodating. I'm really glad you decided to check it out.

High fives for the naturopath and there can never be too many PhD's, MD's, MBA's and ESPN's when you're dealing with this stuff!!

The missing files and "assumptions" in Atlanta just piss me off! What do those people think they're doing, for crying out loud?! And, once again the freaking insurance company steps up with their crap. I really wish they would just do what they're supposed to do. (Whew... I'm sure that did't help anything, but it felt good!) Stay on them about it, though and don't let up. Become the squeaky wheel! Maybe if they get tired of listening to you constantly, they will come around.

Sorry the weather put the siteseeing on hold. I know you and Travis were looking forward to it to finish off the week. Maybe the next trip will be a little more balmy.

Stay warm, thaw out the boogers and have a safe trip back to Atlanta. Give Gavin and Sam a kiss for us.

We love you all.
Robert

Britt said...

Sounds like great news!! Thanks for keeping us posted! I have a friend whose mom went to Sloan Kettering and loved the doctors but you have to go with your gut feeling!! They also did not go there seeking alternative medicine. My brother's fiance went to Boston and loved it, again though not seeking alternative meds. You just have to go with what your heart is telling you, regardless of the money. It will have a way of working itself out!! Stay strong and we will continue our prayers!!

Lisa said...

Hi Laura and Travis, Glad you're home - but did you have to bring this awful weather with you? (hah... I grew up in chicago - loved it then... don't really like the cold now - Florida has a way of spoiling you). Glad to hear your trip was good... I need some new targets for our Tribe Karate practice - let me know if you you can suggest some here in Atlanta (like some dopes at a particular institution that "can't find" their doo-doo"... just kidding).
You're in our thoughts!
Love Lisa & Tribe Stacholy

Tabetha said...

Laura,

I just typed out a post and for some odd reason it got lost somewhere in cyber space. Anyway, I was out of town last week too. Thanks for all the informative posts. I am sorry to hear about the missing file and the incompetencies. Unfortunately, that happens way to often. Stay on the insurance company. Bummer the weather was so cold. I hope it is warmer in Georgia, of course it is warmer in Georgia. I bet the kids were excited to see you!!! Take care of yourself. Thinking of you!!

Tab

jo said...

I am so glad you all found this place because it sounds like they are going help you get rid of this terrible cancer. It is impressive that you have so many caring and extremely educated docs to take care of you. I feel like you can somehow get the insurance company to cooperate...they just have to. I can tell from you blog that they are already helping you by giving you the encouraging information and care that you need. I know that Sam and Gavin are glad to have you home. I will call soon.

Love, Aunt Jo

Unknown said...

Hi Laura
It has been so many years but my dad recently told me of your situation so I wanted to check out your blog. I wanted to send you a message of strength and support and many many prayers that my family and I are sending your way!! You have A LOT to fight for so be strong and keep a positive attitude. My mother was given six months to live at her diagnosis..she was also stage IV she lived for ten years because she REFUSED to let cancer take her from her family, she fought hard everyday and thank god for that because that fight kept her with us for ten years!...so KEEP UP THE GOOD FIGHT!! You will remain in our thoughts and prayers!! Love, Amy "Devincenzi" Cleghorn