Saturday, November 1, 2008

what i didn't know, then

what a difference a year makes. this blog is one year old today. the story of the turnip has taken us on quite a journey. i have learned so much. i have suffered great loss, yet also experienced incredible blessings. for instance, you, sitting there at your computer screen, you are a blessing.

thank-you for being there. thank-you for being part of my circle. i couldn't have made it through this year without you.

in honor of this anniversary, i want to offer a little something more than words. leave me a comment on this post and be entered into a drawing for something fabulous, made by me. i'll draw the lucky name on november 27, the anniversary of my surgery. this idea came from another blogger and thought it would be fun!

there are so many things i didn't know when i wrote this, one year ago. i still had some innocence. i still had respect for my surgeon from before, nearly eight years ago now. i didn't know the truth about phyllodes sarcoma, my turnip's medical name. i walked through the world thinking i was safe, that it was nothing, just a tumor.

and what is a tumor, actually? well, it is cancer.

a tumor is a tent revival of rogue cells. maverick cells, really. normal, sensible cells of the body that turn crazy, get excited, then clump together and reproduce. in the case of a phyllodes sarcoma, they reproduce quickly, these tumors can grow from nothing to the size of a baseball in just a few months. it feels like they grow overnight.

after my first one years ago, which was thankfully on the benign end of the spectrum, my surgeon was very reassuring. he didn't even call it cancer. he patted my hand and told me what anyone would want to hear. he said i was more likely to win the lottery or be hit by lightening than to get another one of these very rare breast tumors.

a year ago today, i sure didn't feel like i won the lottery. being hit by lightening only hints at how surprised and blindsided i felt.

what i know now is much, much more about phyllodes sarcoma than the vast majority of general surgeons out there and probably most surgical oncologists as well. what i know now, is that if my surgeon had done his research, he would have gone in for a second surgery and taken more tissue. he would have had to get clear margins around the tumor, to prevent it's recurrence. my pathology report even spelled it out, that recurrence was a probability. not just possible, but probable! so yes, those sneaky rogue cells he left behind eventually re-grouped and formed another tumor, the turnip i have been writing about this year.

funny thing about those rogue cells, they took seven years to find each other, to re-group and start reproducing like crazy, but when they did? those cells were stronger than the first time. the second tumor wasn't benign, it was more aggressive. the second tumor was on it's way to being dangerous. that second tumor meant business.

i found both tumors because i touch my breasts. i know them, i examine them. i treasure my breasts and even though i don't have breast cancer in my family, i did self breast exams. most breast cancers can be caught early, most will not get to the dangerous point if treated early.

here is my advice for every woman:
  • no woman is too young for breast cancer. don't be naive, do your self-exams. don't allow any doctor to brush you off, or minimize your risks, because you are under 40. phyllodes specifically, even though a rare cancer, is more commonly found in younger women.
  • trust yourself. trust your gut and your instincts and your heart. doctors are not gods. don't take every first opinion, do your research as fearlessly as you can. find doctors you can trust.
  • know your breasts. love your body and learn it's landscape. tune in to the changes in breast tissue through your cycle and always self-examine the same time very month, ideally 5-7 days after your period starts. if you don't have periods, just pick a date on the calender and do it on the same day every month, without fail.
even though this year has been very difficult on many levels, i know now that i was lucky. i know that i was smart to continue my self-exams. i know that catching my cancer before it became a monster was really, really good. it could have easily been worse. for many women, it is much, much worse. women still die of breast cancer.

please don't let yourself or any woman you love become one of the unlucky. practice self-love through regular exams. be brave, face any fears you have around cancer and take care of yourself. you are the only you there is and this world needs you.

what i know now is that catching breast cancer early is still the best hope we have. it's in your hands. our hands.
images found here. thank-you, maryam, for posting them.


Leslie said...

I have been reading your blog for quite some time now, and I want to say that 1) I think it's wonderful, 2) happy blogiversary!, 3) I think you possess amazing strength and character, and 4) I'd love to be considered for whatever it is you're giving away.

Keep the faith.

Laura said...

Inspirational! And congratulations! And Thank you so much for sharing your journey. And I'm excited about your drawing! What a fun idea!

PetalsYoga said...


You take my breath away... in the BEST way possible. (and that's saying something from a Yoga teacher!) Thank you for continuing to inspire and write what needs to be said.



Elizabeth said...

Yo must be very strong to suffer so and manage to sound somewhat cheerful.
I admire your courage.
Yes, I think it is important to question everything you can aout your treatment.
All best wishes from New York.

Annie said...

Tay-I will try again :-). I just wanted to thank you for commenting on my blog. Happy Anniversary!

Maryam in Marrakesh said...

Hi darling Tay. Has it really been only one year since you started your God, what a journey it has been!!! You have come so far. Please don't enter me in the drawing since I already have one of your beautiful pieces (which I wore last week 4 days straight!) - there are limits to selfishness.

Keeping that November 27 date on my mind.

dig-it-designs said...

What a journey your year has been & thank you so much for bravely sharing each step of the way with the blogoverse...we might not always comment, but we're out here.

Sondra said...

You have traveled far in this last year. You have done some very hard emotional work. You have grown immensely. Keep up the amazing work and find Joy in each day. Your strength, your self knowledge, and your soul are being surrounded with light each day.

audreynyc said...

Tay - Thanks for sharing your story. I've recently been diagnosed with IDC and just had surgery. I have a very demanding job and am having trouble keeping it all together. I love your "surrender to healing" advice. I'm gonna try it!

Anonymous said...

Hello Tay!

I tracked back to your blog from your wonderful comment on mine! If you can get through this thing twice and still have a smile on your face, I know I can get through this once!

Robin said...

My friend Kaja recommended your blog to me and I have been a reader on and off for the last year. I had cystosarcoma phyllodes in my L breast in 93. I opted for a full subtotal mastectomy at 27 even though all the docs kept telling me to get a lumpectomy. My gut though told me different, I really had to fight the insurance for the more invasive surgery. Reading your blog really makes me glad I did. Like you, the surgeon down played phyllodes and treated it like it was hardly cancer.

Congratulations on your blogiversary, your beautiful jewelry and good luck with the job hunt. I'm out there with you. It's not easy, but reading about your experiences is helping me to keep the faith. Be well.
Warm regards,
Barb Ray