My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Scanxiety

anxiety

Tomorrow I’m having my first MRI since being diagnosed a year and a half ago.  I was supposed to get one about six months ago but, that didn’t go so well.  I got there, undressed, took off all my jewelry, sat down in the big, cushioned, slippery faux leather hospital chair, they found a vein and injected the needle for the MRI contrast stuff.  They asked me a bunch of questions and then gave me a look over to make sure I didn’t have any metal on.  That’s when they noticed my tissue expander.

“What is that,” asked the nurse, concerned?

“That’s my tissue expander,” I said.

“You still have that,” she asked?

“Well, does it say anywhere in my chart that it has been removed?”

“I didn’t look.  I just assumed it was out by now,” she said.  “I’m so glad I checked.  Expanders have a metal piece in it.  That would have been bad.  You can’t get an MRI until that is out.”

“WHAT THE FUCK,” I screamed!!!!!!!!

It was a really big, WTF moment.  How could that have been missed?  I had been psyching myself up for a whole week for that moment and even got injected (and they hit a nerve so it was ouchy) and suddenly, I couldn’t get it!!!???!!!  I was not a happy camper.  It’s not that I was looking forward to an MRI.  Who is?  But I wanted the all clear.  I wanted to know that my months of chemotherapy and radiation had paid off.  At least, that was what I was hoping for.  But it was declared that I would have to wait until my expander came out.

3 1/2 months ago, that’s exactly what happened.  I got my reconstruction and my expander removed.  Two weeks ago, my surgeon ordered an MRI, this time remembering that anything that could have me recreating Alien, was out of my body.

So, here I am, trying to psych myself up again and I’m just as nervous as I was the last time.  I’m not scared of being in the little tube.  While I’m not excited by the noise, I know I can take it.  But my first MRI was scary and I’m terrified as to what could be seen this time around.

I also remember my first MRI like it was yesterday.  It was just a couple of weeks after I was  diagnosed, and maybe days (or a week) after I found my current breast surgeon.  I was booked for a back to back MRI and PET Scan.  Once my MRI was finished, I was sent out to the waiting room because the PET Scan machines were running late.  After an hour, I was ushered into the whole PET Scan process.  After 2 hours, I was released to my mother who was waiting for me in the waiting room with a sandwich (you can’t eat before a PET Scan and by that time it was late afternoon and I was dying of starvation).  The other thing that was waiting for me was several phone messages.

One phone message was from a nurse at the MRI station.  “We have the results of your MRI.  Can you please call us back at your earliest convenience?”

The other phone message was from my breast surgeon’s secretary. “Hi, we’d like to book your next appointment a few days earlier.  Call us back to let us know if you can switch your appointment.”

I almost threw up.  Why did I have all of these urgent messages on my phone?  Why were my results back so quickly?  Why did my surgeon want to book me as soon as possible?

Since I just got out of my scans, I went to the front desk and let them know that I got a message to call them.  “But I’m here so if someone can just come out to talk to me, that would be great.”

“I think you need to call them,” the secretary said.

“Look!!!!!  I just got out of both the MRI and PET Scan and got a message that my MRI results are back.  Why can’t someone just come out and talk to me right now?  I’m right here!!!!”

She realized that made sense and called the nurse.  I went to sit down next to my mother, looked her in the eyes and said to her, “You need to prepare yourself.  This is the moment we find out that I’m going to die.”

My mom looked stunned.  He eyes widened and face stiffened.  How can you hear something like this from your child?  “You don’t know that.  It could be anything.  It could be that they just got the results quickly and want to let you know so you don’t worry.”

“Why would Dr. Guth want to see me so quickly?  Something’s wrong.  It’s all over my body.  They’re going to tell me now that I’m going to die.  This is the moment I find out I’m going to die.  You better prepare yourself.”

I was convinced of this.  There was no other explanation.  No other possibility.  My fate had been set.

A nurse came out.  She sat next to me.  I felt the blood leave my face.  I felt still, unable to move.  I breathed so slowly.  She read the results.

“We could see the tumors in the right breast.” She talked about things we already knew about the tumors and how this scan confirmed what we already knew.  “But here’s the thing, we don’t see anything in the left breast.  I know that your mammogram came back inconclusive for the left, showing a possibility of some tumorous clusters but nothing is showing up here.  That’s odd.  We don’t think that there’s anything there.”

It turns out, she was right.  A failed attempt at a stereotactic biopsy a week later with 6 mammograms to try to find these elusive tumors that my first mammogram had spotted turned out clear.  There was no cancer in the left breast.  Just lots and lots of calcifications.

An hour after I left the hospital that day, I got a call from my breast surgeon.  She wanted to let me know that my PET Scan came up clear and that she was happy with my MRI results.  I asked her why she wanted to see me earlier then.  What was wrong?  It turned out that she just had a cancellation and wanted to get me in as soon as possible so that we could make plans based on that day’s results.

It’s crazy.  In one hour I thought for sure I was getting my death sentence and then found out that I was going to live.

Tomorrow, who knows what the results are going to be.  I hope that all of my sacrifice, all of my pain and suffering and fighting have been worth it.  But, as many of us know, it is not a guarantee.  I could have done it all just for the cancer to find a new home in my liver, my bones, my brain, my other breast.  Nothing is for certain.  Nothing is in my control.  I know this.  The MRI machine knows this.  It just tells the truth of what is brewing beneath the skin.

What is my truth?  Is tomorrow the day I find out I’m going to die or that, at least for now, I get to live with no evidence of cancer?

**Update.  My MRI came back clear.  So as of right now, I’m NED or cancer free, or whatever.  There’s no visible cancer!  I couldn’t be happier.  Thank you for the love and support!!!

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Warrior Pose

I’ve been a bit MIA lately due to being crazy with work and life.  I’ve missed many of your posts lately and I want to apologize for that.  I hope to find time to catch up.  It might be like this for the next month or so since this is my busy time with work.  I just wanted to put this out there.  Now, on to our regularly scheduled blog post!

Back in July, I was reading one of the blogs I had come across called My OBT (One Beautiful Thing), a blog that finds the beauty in every day.  She posted about these amazing headpieces that she found on Etsy.  They were incredible, intricate and fierce!  And in the post, she quoted the artist who mentioned her work with Hidden Warriors, an organization that works with women cancer survivors and treats them to a day of delicious clean food, power posing, and costume therapy.  I became obsessed.  I had to find out more.  I had to get a chance to wear one of those headdresses!!!  Last Sunday, it happened.  I became a warrior.

The mission of Hidden Warriors is “increasing self-esteem in and empowering women who have been affected by cancer. Together, we create an experiential and transformative adventure which tap into the Hidden Warriors they already are. The Warrior Makeover Workshop model is achieving this goal!”

The day started at 10 am.  I entered the building on W 26th St. and took the elevator to the 6th floor.  I was immediately greeted by Mayra, the mother of the Hidden Warriors founder and inspiration behind the organization whose bubbly and excited energy caught me the moment I walked off the elevator.  She was running around, making sure everything was set up and ready for us.  She wanted everything to be perfect.

First, a lovely vegan meal arrived with a kale salad, sandwiches, smoothies and snacks.  It was a beautiful feast.  One of the goals of Hidden Warriors is to show the benefit of clean eating.  I’m not a vegan but this meal was so delicious, I forgot about real cheese.  And I love real cheese.  IMG_5857

Once all of the other women arrived (there were five of us in total), the sessions began.  Marlene, who founded Hidden Warriors, welcomed us to the day and outlined everything that was planned and her vision for the future of the organization.  We were then treated to a session with an OT on channeling positive energy by tapping on certain parts of our body.  I enjoyed learning a new technique for meditation and the ritual was calming.  I’m not sure this specific method of meditation is my taste but I would love to incorporate more meditation into my daily life.  Even taking five minutes to clear the mind was rejuvenating.

Next, we were asked to think about gratitude and how “finding the gold in the darkness” of our cancer experience could be beneficial both for our physical and mental health.  Now, as many of you know, I hate cancer.  I really fucking hate it and, in my opinion, nothing good has come of it.  You know that I am of the belief that cancer was not a gift.  So, to hear that they wanted us to do this stiffened me up a bit.  What would they think of me?  Was I failing warrior 101?

I chose to be honest.  As we went around the circle reading from our list, I listened to the other women and their lists of gratitude.  Some truly have found the good in cancer and have come out the other side either with new perspectives on life or with positive experiences.  I envied them.  “I don’t give a shit about the small stuff anymore.”  Well, I still do and even more so now.  “I only see the good in people.”  I always did but the negative energy that people put out is now amplified for me.  So when it came to my turn I said, “Nothing good has come from cancer.  I have to be honest.  It has really been a curse and my life is worse off for it.  I am grateful for so many things but none of them because of cancer.”  I waited to be chastised or asked to leave or to dig deeper.  But, instead, my point of view was welcomed.  My opinion and my heart had a place there.  I felt accepted.  Even though my opinions might not conform to their philosophy per se, I was not seen as the Debbie downer, the poison, the pessimist.  I was able to say that everything good that happened to me during my cancer experience was not because of my cancer but, in spite of it.  It was empowering for me to say that and to acknowledge that I possessed the tools before cancer that helped me to get through it.

After our gratitude circle, we participated in a short yoga session.  It was simple and light.  I would have liked more but there was costume therapy to be done!

I was paired with makeup artist, Jose Lopez, who generously volunteered his time to be with us.  We sat down and introduced ourselves.  He asked me what I envisioned.  I didn’t really know but I told him that I was not afraid of color and that I like bold colors.  He asked me if I wanted to be pretty or dramatic.  My answer was, “If I want pretty, I’ll go to the Bobbi Brown counter.  I’m here.  Let’s do this!!!!”  It was the answer he was looking for.  I put my makeover completely into his hands.  I adored him from the moment I met him and knew I could trust his expertise.  This was the right decision.  For the next hour and a half, I watched Jose transform me from a breast cancer survivor who, that very morning could not look at herself in the mirror, into a dramatic, tribal like goddess.  It was incredible.  He kept adding on more and more.  And when I didn’t think it could get any better, he added on more lashes, more glitter, more eye makeup, more shadowing…AND IT WAS FABULOUS!!!!!  Here is some of my transformation.

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Before, with no makeup on.

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The beginning of the eye makeup

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With eyes closed

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Add on the glitter.

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Adding in the details

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A side view.

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Another side view.

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Adding glitter onto the lips.

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More time? Let’s add more eye makeup!

 

Once the makeup was complete, I was draped in sequins.  We had a wonderful fashion/costume designer working with us and custom making/cutting all of our outfits right then and there.  All of the fabric and his time was donated.  It was wonderful.

Finally, we had the headdresses placed on our heads by the amazingly talented artist, Darrell Thorne (check out his amazing website!)  He made each of the head pieces and donated his time to be there to make sure they fit perfectly.  My head piece was amazing.  It had rhinestones and twisted metal. It was simultaneously etherial, powerful and haunting.

IMG_5908IMG_5861warrior11warrior10warrior9warrior7IMG_5913IMG_5920IMG_5915

IMG_5900IMG_5905Once my headpiece was secured, I was escorted into the studio where my pictures were to be taken.  Before arriving, I was asked to share five songs that made me feel happy or powerful and these became the soundtrack for my photo shoot.  I won’t lie, even though I am an actress, I was totally nervous about my picture being taken.  I haven’t felt attractive in so long so this felt so vulnerable to me.  But there’s something about putting on a mask and costume that allowed me to channel what was deep inside; a confident, powerful woman.  I haven’t gotten any of my final, touched up photos yet but here are some pictures snapped from the computer.

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At the end of the day, what did I get out of this experience?  Number one, I met some incredible women cancer survivors who were inspiring.  I wish that more time could have been spent getting to know them.  That was the one thing missing for me.

The transformation was so much fun and Jose, my makeup artist, was the highlight of my experience.  I loved working with him and felt like he really got who I was and what my Hidden Warrior looked like.  Like Michelangelo, who could see the sculpture underneath the marble slab, Jose could see the warrior underneath the makeup and used his brushes to bring her out.  When the transformation was complete, I did feel empowered, no doubt about it.  But when the makeup, costumes and headpiece came off, I was back to myself again.  I wish that I could say that the warrior you see in these pictures stayed, and I look at her from time to time and feel beautiful and free, but at the end of the day, my scars are still there, my body is still torn.  It’s hard to get rid of that point of view in just one day.  I wish I could.

I do want to try to find a more positive outlook on life.  I know that I will never see cancer as a gift but that doesn’t mean I can’t find the good in my new normal…my after breast cancer life.  I’m not sure what a happy life looks like right now but I know it exists and I want to find it.

I also learned that power can be found in false lashes, glitter, a severe brow and rhinestones!!!!!  No, really!!!!

Thank you, Hidden Warriors for this amazing opportunity.  I’m so glad that you exist and are making it your mission to empower women affected by cancer.  Hidden Warriors can continue only through funding and donations so, if you have a few dollars left over this month after rent, consider donating to their organization.  If you are a woman cancer survivor and are interested in participating in Hidden Warriors in the future, you can get more information on their website.

Here are a few more pictures of some of the other women warriors.

IMG_6004IMG_6006Here’s what happens when you give me a wig….

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Here’s a picture of me and Jose.

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And if you’re curious as to what songs I chose, wonder no more!

Friday I’m In Love

Vivaldi’s Four Seasons – Winter

Smooth Criminal

Time of Your Life 

Edge of Glory

 

 


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Spring Coats For Women With Breast Caner Related Lymphedema

Lymphedema awareness month is coming to a close just as the weather is finally warming up here in NYC.  The trees are starting to bloom and the birds are chirping their springtime song.  I’m starting to transition my closet from chunky sweaters to lightweight frocks.  Last week, I was wearing my spring coat since it was a warmish day.  It was a day that I had to go to the PT to get my lymphatic massage and have my arm bandaged.  I always hate having my arm bandaged because I leave with my clothes feeling tighter and ill fitted.  I don’t have as much range of motion and I can’t go about life normally.  But it’s only for a few hours a week and I can handle that.  But this time, in my spring coat, I was feeling extra stuffed in.  I could barely bend my arm.  Anyway, as I was maneuvering to get my bandaged arm in my coat, I heard a rip.  The shoulder had ripped from the seam.

Fan-fucking-tastic!

It became apparent that this coat will no longer work for me and neither would any of the spring weight coats I owned.  I asked one of the PTs what women do when they need to get wrapped but need a coat and she said that they just wear oversized clothes.

Well…no thank you!!!!  I have suffered enough and I am not going to wear some oversized shmata just because I have lymphedema.  And so, my quest for a coat that would fit over my bandages began.  It wasn’t easy.  I eventually found a coat I loved but the pickings were slim.  But I wanted to share what I found with all of you so you won’t have to search as hard as me.  Let me know if you get any of my recommendations or if you have found something else that you love.

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Waven Imma Clean Denim Kimono Jacket.  asos.com

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Noisy Mae Denim Kimono Jacket. asos.com

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North Channel Jacket. anthropologie.com

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Cropped Swing Trench. I bought this coat but it didn’t work for my body. But the material loose and stretchy and it fit nicely over my bandages. anthropologie.com

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Vegan Suede Kimono. anthropologie.com

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Trench Cape. jcrew.com

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Deconstructed Trench Coat. cosstores.com

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Grosgrain Detailed Parka. cosstores.com

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Eileen Fisher Silk and Cotton Knit Long Sleeve Kimono Coat. nordstrom.com

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Drippy Linen Jacket. freepeople.com

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Josie Natori Jacquard Wide-Sleeve Coat. saksoff5th.com

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Reversible Dot Inverted Pleat Dot Techno Jacket. saksfifthavenue.com

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Taffeta Trenchcoat. saksfifthavenue.com

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I’ll get this coat when I win the lottery. Name Khan Embroidered Silk 3/4 Sleeve Coat. bergdorfgoodman.com

 

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I’m going to buy this raincoat! Like, tomorrow!!! zara.com

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This is the coat I ended up with. The color is gorgeous and it’s a great weight for these cool spring days. zara.com