so i'm hearing that people start to get a little crazy when i don't write for a while...
it's hard because compared to the diagnosis, the surgery, and the oncology appointments...it feels like there's nothing going on. i'm sitting and waiting for the results of the test. (holding my breath for a LOW score.)
what have i been doing?
well, kitty and i hang out ALL the time.
i've been emailing like crazy with all of my friends who are pregnant and due either yesterday or in the next few months.
and i've been researching the oncotype dx test and my options after that, providing my score is low.
my cousin laurie's husband, steve (mentioned last post) is a big wig oncology guy. :) so i've been talking to him about all the possible options. (it's been such a big help...i can't even tell you. to have someone in the family going to bat for me? compared to the oncologist who didn't even want to answer my simple questions? it's amazing.) steve used a connection he has to one of the top breast oncologists in the world - a dr. at dana farber cancer institute.
(which do you like bettah: dana fahbah oah kaisah?)
in talking with steve, it seems like if i get a low score on the oncotype dx test, i have a few different options: 1) stay with kaiser in denver and take tamoxifen, 2) get a consult with the dr. at dana farber, 3) potentially get involved in a clinical trial that is related to the dr. at dana farber.
the clinical trial idea is actually, at this point, the most intriguing to me. it may be because i haven't been able to use my social work skills in the last few months...and that i'm jonesing for a way to make a difference. it also may be that i've just been reading a lot about how there is so little research on younger women with breast cancer. if i could take this crappy experience to potentially help other people in the future...that might be a really good thing.
BUT.
i'm NOT getting my hopes up. there is still the full possibility that i will have to do chemo.
but it's all about waiting right now. waiting another week or two for the test results to come back.
until then i will keep hanging out with kitty, keep emailing pregnant ladies, and pick up my friend jessica at the denver international airport on friday. not too bad, right?
xo
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.
Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
-Mewlana Jalaluddin Rumi 1207-1273, written in 1230
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4 comments:
Meghan,
It's wonderful to hear your "voice" again. You're right, we all do go a bit crazy when we don't see your news. So it's good to know you are hanging tough, doing your research and also having some good quality time with Kitty. I continue to think of you daily and hold you close. I think you are doing the right thing in getting a second...or maybe third opinion. And I'm glad Steve can help navigate this craziness too!
Thinking of you and sending lots of love,
erica xx00
Well, I'm glad to hear you want to use your social work skills in this endeavor. However, I'm not sure if being a test subject is one of the best ways to do that.
I'd rather see you volunteering to help others or maybe work in the field if you are so inclined.
Anyway, I finally found the right combo of user name and password to get this posted. I will probably forget what I used, since I had to go through about 10 combinations to get the right one and I didn't write it down at the moment.
C'est lavie (or however they spell it in French).
You keep us informed and we will bombard you with supportive comments.
Ken
Just so you know, the frequency of my checking your blog is inversely proportional to the frequency of your posts.
In English, this means that if you post two days in a row. I will check once each day, see the posts, and be happy.
If you do not post for several days, I will check increasingly more often each day until it gets to an obsessive once or twice an hour until I am rewarded with a post.
This confirms what you already know... that we go a little crazy when you don't post!
I'm a big supporter of second opinions so I'm happy to see you go that route. Some wise person in an earlier comment said something about this being much about intuition and what your gut is telling you. It's true - your gut will be a good guide. It's just hard to hear it with all the "noise" of the information. You need both though!
Do what you do - yoga, meditation, playing fetch - and let the decisions come. You've got a good strong compass. Just listen. And be confident. As you have discovered with your first oncologist - on paper, there may be a formula - but real life is real life and it's a bit more complex! You know you best.
We love you most!
Much love and hugs as always,
Julie
It's about your fan club.....Yes, we all wait anxiously (even your mother who talks with you frequently either in real time or through email) to hear your latest thoughts! You are a star. What you write grounds us in your strength and stabilizes our feelings. It is a powerful tool with which to communicate and we all wait with bated breath. Blog on....
More love than you can imagine!
Mom XXOO
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