a rare tumor means that of all the possible tumors a body could choose to grow, only 1% are these phyllodes tumors. what comes along with that rarity is a lack of studies on them and very often, surgeons (even those who specialize in breast cancer) with precious little experience.
my surgeon in 2001 was good and very kind, but i was only the second phyllodes tumor in his 25 year career! so he didn't know, i can only assume, that even for benign tumors, proper margins have to be taken. to be safe, 2 cm of tissue around the tumor must also be removed.
is this comforting? strangely, it is.
what that piece of information means to me is that this thing is not a sign from the universe that i am on the wrong path with quitting my job and going for my studio full-time. the probability of reoccurance was actually written into my pathology report from the first tumor.
thank goodness for martha, who was able to interpret that report for me so quickly. and thank goodness for portland, for me here in portland, where i can find care experienced in the rare, the unusual, the weird.
today i meet with the surgeon, dr. naik. she has already requested the slides from my old pathology report. i love that, a doctor not taking any chances and going the extra mile to make sure we figure it out and get exactly the right treatment. i am thankful beyond words that a dear friend will come with me to take notes and keep a clear head if mine fogs up.
exhale.
i spent long minutes on hold and on the phone with insurance companies yesterday, trying to make sure my ducks are lined up just so. it's a tricky business.
and thank goodness also, for you out there reading and pulling for me. the comments and emails this week have been so, so encouraging. getting those messages of solidarity have calmed me like nothing else could.
even though i am calmer than a few days ago, what remains is this numb limbo state which has sucked out all my zip and motivation. i know i should be busting ass in my studio, i should be keeping busy -but i just want to hide in the safe cocoon of my apartment.
I can't see beyond the appointment today, i feel frozen until i know something, anything. a date. a date for surgery would be great. i hope i get that today.
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6 comments:
tay. although i am well-known for torturing cheerleaders in high school, i want you to know that i have a pompom in each hand, and a short skirt with built-in underpants. you are my home team, and i am on top of the f-ing pyramid for you, GO, TAY!
Oh my......built in underpants.... You have so many people rooting for you! Okay, to the cheerleaders outfit, I would like to add a Moroccan fez hat in bright red. And some Moroccan spangled slippers. I am also whispering powerful Moroccan spells under my breath....
Let's hope you get that appointment soon.
that is a little surprising to hear, it took me less than 10 minutes and a quick little google search to learn that removing the margins are essential, and I am not even a physician. it's called phyllodes because it resembles a leaf, with little veins and tendrils of cells reaching out. My curse is melanoma (family history and close calls of my own), and it's the same with that- dig as deep as possible to make sure you get those crazy, out of control cells, just one left behind will come back to haunt you.
And just another vote of confidence- if you had to have some sort of tumor growing in your breast, one that so infrequently metastasizes and is unlikely to recur (as long as you get all of it) is a blessing of sorts. I hope they can whisk it away and clear your system to return to your creative ventures in no time.
best wishes for health, healing, and the return of the creative spirit (it's inevitable, but you can't force it either. I know the frustration all too well...)
oh, ladies....thank-you! I am in tears reading your good wishes. I love picturing that cheerleading team with fabulous outfits. It's a great image to hold on to.
bless you all for holding me through this...
Hello Tay,
I've just come from listening to you share with all of us Ladies Who Launch all about blogging-for which I am eternally grateful!- and now here I am reading your postings about this challenge you are facing. I hope you've gotten that surgery date. And here's a thought. You might take this opportunity to 'invite' any other "distresses" that are in any of your bodies...physical, spiritual, mental, emotional....to bind themselves to that tumor and be let go of right along with it when it is *completely* removed. If this seems like a good idea to you, you can of course,'tweak' the visualization with your own personal style.
Meanwhile I'll be sending visions of healing and loving arms encircling you. And yes, OF COURSE you want your mother! Your sister is SO right on that one! I'm glad she will be coming.
Good night and sweet dreams dear Tay.
~~Marian
Hey Tay...
Your blog entry showed up on my "google alerts." I just had a turnip removed from my breast 3 months ago. They had to go back in a second time to get better margins I'm fine now, feel totally healed. I love my docs but they have nothing preventative to offer for recurrance - diet, nutrition, supplements, etc. All they can do is watch me every 6 months with screenings. It's rare and they just "don't know" why it develops and how to prevent it's potential "bad behavior." I MUST lead you to Kris Carr's website www.crazysexycancer.com and her blog and her book Crazy Sexy Cancer Tips and her awesome documentary Crazy Sexy Cancer. She was on Oprah a few weeks ago with Dr. Mehmet Oz. The community that is developing around Kris' site and blog is so educational and inspiring. I think you'd fit right in even though you've only had a cancer "scare." Check out the 8 minute trailer of her documentary on her website. Stay strong. You are not alone.
Dale
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