My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


7 Comments

The Droopy Boob

droopy

“Droopy boob.”  This is not the title of my new book, my rock band or my porn name.  It is what was described to me this week about my remaining original breast.  The good breast.  The one not sliced off and then fried.  The one with the nipple.  The one that still has feeling and sensation.  The one that, while imperfect, is perfect to me because it’s mine.

When I first started seeing my plastic surgeon two years ago, I remember that after my mastectomy and we starting talking reconstruction, he mentioned that he would like to do a lift on my left breast to make it symmetrical.  He said that my breast was, “a little droopy,” to which I responded, “well, that’s because it’s sad because it misses his friend.” Funny, right?  I thought so.  He didn’t get it.  Or doesn’t have a great sense of humor.  Or both.  I never thought more about it.  The DIEP Flap was such a big surgery I told him that I didn’t want him to touch any other part of my body.  Slicing me in half was quite enough, thank you!

Before breast cancer, I liked my breasts.  They weren’t too big and while they weren’t quite as high as they were when I was 18 (I had just finished breast feeding for 17 months, after all), I thought they still looked pretty good.  It never occurred to me to do anything to my breasts to enhance them in any way.

This past week, almost a year after my DEIP Flap, I went back to my plastic surgeon to discuss a follow-up surgery to make my right breast, the one that was chopped off and reconstructed, look more like, well, a breast!  Because isn’t that the point?  My surgeon did a great job of matching the size and the symmetry is pretty good.  But the top of the breast is flat.  I described it to him as a blown up pancake.  There’s no cone shape.  I want that changed.

He’s not sure that he can get it exactly like that but he suggested that if I want more symmetry, that I do a lift on the other breast because, “it’s a little bit droopy.”  He called my breast droopy again!!!!!!!  For real!

Now, when I think of a droopy breast, I think back to when I was 9 years old and my mom sent me to a babysitter after school.  She was a mom with three children.  She was overweight and had large breasts.  I remember (I’ll never, ever forget this), one day I was at her house after school.  She was in the kitchen cleaning.  I asked her something and when she turned around, I could see her nipples hanging out from the bottom of her shirt. I remember being completely shocked.  I had NO IDEA boobs could do that!!!!!  I remember thinking, “how are her breasts at the bottom of her shirt?”  It didn’t make sense to me!  So, when I hear the term, “droopy boobs,” that’s exactly what I think of.

In comparison to my babysitter, my left breast is alert and perky.  It’s still in the chest area and that’s pretty good.  But according to my plastic surgeon, if I want true symmetry, I’ll have to do some work on the good breast.  He said he could try to get some droop on the right one but “why would I want to do that?”  Really?????

I asked what the lift would entail.  He said he’d have to cut a crescent above the nipple and would do a lift from there.  Another scar.  In a very noticeable place.  I forgot to ask but it seems that if he made this surgical cut, I’d lose some sensation in the nipple.

I want nothing more than to look like myself again.  I thought that was the whole point of reconstruction.  But as I go on and move closer to the end of this cancer experience, I’m reminded that, once again, I’ll never be like I was.  My rebuilt breast will never look like the original.  It’s a fraud.  And now it’s likely that one nipple will be pointing straight while the other a little more south.  I’ll be like a Picasso.

I know that my surgeon kept mentioning this because he is a perfectionist.  As well he should be.  I get it.  But my body is not my own anymore.  I still look in the mirror and don’t recognize the reflection.  I think that another major scar would break me.  What would it be for, really?  Symmetry when naked?  What if I still can’t look at myself without being disgusted?  Then what’s the point of that symmetry?  What’s the point if it’s at the expense of my peace of mind and my self worth?

I am taking into consideration everything he said but my gut is telling me to keep the cutting to a minimum.  I have been through enough.  I have done enough.  It will have to be enough.

My next surgery is scheduled for February 16.  It will be much easier that my DIEP Flap.  He said that there’s even a possibility that I won’t have to be put under general anesthesia.  That would be great.  And barring any complications, I’ll be ready to go back to work in a week.

How many reconstruction surgeries did you have?

Did you have a lift on your breast to match the reconstructed breast?  Are you happy you did it?  Do you regret it?


16 Comments

Life After Breast Cancer: The Other Side Of Pink

 

This post was written for an organization that I am a part of, 5 Under 40.  5 Under 40 helps breast cancer survivors and those with the BRCA mutation age 40 and under with beauty and wellness services.  In addition, they host support groups and meet ups.  They have helped me in so many ways so when they asked if I could write something for them, I jumped at the opportunity.  I want to thank 5 Under 40 for all of their support and for giving me a voice in their community.  Please check them out at 5under40.org and if you are in the NY/Tri-state area and would like to be connected to 5 Under 40, please let me know

.IMG_8558

            I know what I was told.  I was told that it was going to be a hard year; a mastectomy, chemotherapy and radiation.   I was told that I was going to lose my hair but it would come back and while it did, I’d get to wear cute hairstyles.  I was told that I’d lose some energy and might feel sick but once it was done, I’d return back to normal.  Normal.  That’s a word that I heard a lot referring to what would happen when I finished treatment.  I found “normal” to be far from the truth.

I was diagnosed with stage 2B breast cancer in my right breast and lymph nodes at age 37.  My son was 19 months old and we had just weaned from breastfeeding.  I was working full time as a teaching artist, my passion, and beginning to consider ways I might advance in my career.  Secretly, I was also beginning to think about what life might be like with another child.  Originally I had said, “one and done,” but, as Mother Nature tends to do so well, I forgot about the lack of sleep, the spit-up and the aching raw nipples.  I remembered the cuddles, the first giggles…the first everything.  But when you are diagnosed with cancer, many of your plans for the future get put on hold or changed forever.

I endured my treatment like a trooper.  I made jokes, smiled (and cried and threw a few temper tantrums) through the tough days and created a mantra to get me through the hellish days, “a blip in time,” to remind myself that all pain and discomfort would pass.  Through my six months of chemotherapy and 15 sessions of radiation, I checked each treatment off my calendar until the end, when my life would go back to normal.  I looked forward to spending long days with my son without feeling completely warn out.  I was excited to work and not be afraid that my chemobrain would completely derail or ruin me professionally.  I wanted to hang out with my friends, drink wine, eat sushi…hell, I just wanted to be able to taste my food again!!!!!!  I was excited to not spend time every week at the cancer center and to get back some time for myself.  I was ready to look normal again, to not look like a cancer patient and to get my body back.

When you are going through cancer treatment, you are surrounded with support; support from your medical team, family, friends and, if you are lucky like me, colleagues and bosses.  But, when treatment ends, a lot of that support goes away.  At one point you are seeing your oncologist every 2 or 3 weeks and suddenly, it’s every three months.  Of course you can call whenever you need something but, in their eyes, they have done their job.  Now your job is to get back to living life.

Or now that your hair has grown back, your colleagues figure that the worst is over and that you are feeling better and can return to work as you did before.  What they don’t know is that cancer related fatigue can last for years.

The offers for home cooked meals, laundry help, childcare also start to dissipate.  When treatment ends, so does a lot of the help that came with it.

It wasn’t long after treatment ended that I realized returning back to my normal life was unrealistic.  I no longer looked like myself, even with my hair growing back.  I developed major body image issues (remember sixth grade people?) because of treatment related weight gain and the whole one boob thing.  I looked in the mirror and didn’t recognize the woman staring back at me.  This was disconcerting.

I didn’t feel like myself.  I remember one-month post chemo, I tried to take a bike ride for exercise.  My husband encouraged me to go for a long ride.  I almost didn’t make it home.  My body was no longer capable of doing what it had done just six months prior.  This included exercise or for daily endurance which was for things like raising my son, grocery shopping, scrubbing the bathroom…whatever.

I can go on and on about why life wasn’t normal.  But I think the hardest thing for me after cancer was dealing with the trauma of what had happened to me.  I fought so hard for so long and suddenly, it was over.  I didn’t know what to do next.  I didn’t know what was supposed to come next.  I kept thinking I would feel the same, think the same and look the same as I did before cancer.  None of those things happened.  Instead, I felt like I was living in a body that wasn’t my own and having thoughts and feelings that were different than what was normal for me.

Depression post-cancer is very common and it was happening to me.  I was afraid every day about recurrence.  I was afraid every day that I couldn’t live up to everyone’s expectations of me or the expectations I had for myself.  And managing post-treatment side effects like lymphedema and fatigue were more difficult than I anticipated.

I don’t write all of this to scare people.  I write about it because it is the truth for many of us.  I think what is hard is that breast cancer is depicted as this “happy” cancer or “party” cancer.  I mean, what other cancer is celebrated with pink feather boas and t-shirts that read, “fight like a girl” or “breast cancer warrior?”  We see images all of the time bald women surrounded by their friends, covered head to toe in pink and smiling and cheering.   We hear stories about women who say that cancer was a gift and has changed them for the better.  We see these images and hear these stories but that is not everyone’s reality.

Some people hate the color pink (who me?) and don’t feel empowered by pink glitter and cosmopolitans.  Some of us don’t like to walk with Komen with every girlfriend we’ve met since Kindergarten.  And some of us think cancer was a curse and feel that it didn’t change us for the better.  Some of us are angry about what happened to us.  Some of us, instead of not sweating the small stuff (we aren’t supposed to sweat the small stuff anymore, we’ve been through worse) feel that each wound, no matter how small, cuts more deeply.  And some of us, after cancer, have a hard time.

This is not true for everyone.  I have met so many people who have gone back to living their lives and living them well soon after treatment was done.  We read about these stories in the papers and the breast cancer websites and blogs all the time. Many of the stories we hear are the ones where there is a happily ever after.  But, if you are not living happily ever after, after having cancer…you are not alone.

Here’s what I will say.  I am two years post diagnosis.  As of just two months ago, I stopped crying every day.  I still think about cancer every day but I’m not crying.  That’s a big step.  I am also finally starting to think about my future and with the help of a therapist, I am defining my new normal.  It’s hard work to redefine yourself but I’m finding the effort worth it.

Life after cancer might not be what you expect. Know that whatever you are feeling, thousands of others feel the same way.  Know that there’s no right or wrong way to do cancer or to feel after breast cancer.  Also know that there is help for you if what you feel isn’t like a “warrior” but like you have been defeated.

You are not alone.

You are not alone.

 


3 Comments

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!!!


13 Comments

What Lies Beneath

“In an art form that deliberately conceals the enormity of effort that goes into its creation, we are not meant to see behind the curtain.  But I think that this does a great disservice to the dancers, and that having a sense of what lies beneath both enhances our experience of the performance and leads to a more profound appreciation of the dancer’s essential being.” -Rick Guest, photographer

Ballet-dancers-51__700

The thing I admire most about ballet dancers are their ability to make the super human look effortless.  The leaps, the spins, the balancing on toes from movement to movement…it’s as if their bodies are being carried by the wind.  Or their spines are jelly rather than bone.  Their legs are pulled up straight by a string controlled by an invisible puppeteer.  But what is not often known to, or considered by the audience are the hours upon hours of grueling rehearsal.  We don’t see the bruises or see the winces from the sore muscles.  We never see the sweat wiped from faces and chests backstage between entrances and exits.  We never see the blistered or broken toes that are hidden by the delicate, pale pink pointe shoes.

It is the job of the dancer to dance through and in spite of the pain.  Just like an athlete who must still get a goal, a touchdown, or land solidly, without faltering from the uneven parallel bars despite sprained and broken bones.  The show must always go on and it is the job of the artist to hide the hard work and the pain beneath the costume.

After six weeks of taking a medical leave of absence to recover from my DIEP Flap reconstruction surgery, I will be going back to work.  While I love my job and can’t wait to see my students again, I’m feeling trepidatious about getting back to normal life.  I have recovered well, without much incident, but I feel like I’m still recovering.  I can get around and move normally if I’m careful but I don’t have the same energy or endurance as I did before my surgery.  I get really tired in the middle of the day and find it hard to focus or get my energy back without resting.  Each week I experience dramatic improvements and I have every reason to believe that within the next few weeks my engery and endurance will return.But for now, I feel like I have to hide what I feel.

I am always saying, “fake it ’til you make it.”  I say it to students who tell me that their too tired to get up from their seats to play a game or perform a scene.  I tell them that if they fake having energy, that soon they really will be energized.  It’s mind over matter.  If you put on a smile, eventually, you will feel happier than you did a few minutes ago.

I did this throughout chemo and radiation.  I had to hide my fatigue under the costume of smiles and exuberance.  It ended up working for me.  And now I need to do it again.  I must put on my costume and conceal the awful scars that lie beneath; the scar from hip bone to hip bone, that show all of the hard work and healing I have had to endure these last six weeks.  My students don’t care if I was cut in half on January 8th.  And they shouldn’t care.  I’m there to do a job and the show must always go on.

So, on Monday, the alarm clock will go off.  I’ll groan and complain as I walk to my shower.  But by the time I get off the train and walk into school, I’ll have a smile on my face.  I will teach effortlessly, with grace.  No one will see the work it’s taking for me to keep going.  And maybe I’ll get so lost in the moments, the laughter and stories, that I’ll forget for a little while myself.  No one will see what lies beneath.


4 Comments

Over The Hill and Through The Year

happy new year

Dear 2015,

What a year it has been.  I knew it was going to be hard.  I knew I was going to have some challenges.  I also knew you were going to be filled with beauty and joy.  You were all of these things and more.

In 2015, I was still undergoing chemotherapy.  It knocked me out pretty hard and even gave me some severe anemia.  I managed to avoid more blood transfusions, like the one I got in 2014 by eating a lot of kale and liver (which does not taste great when on chemo, by the way).  But I kicked cancer’s ass and finished chemotherapy only 2 weeks behind schedule.  I celebrated by taking to the streets of NYC with a sign that said, “My Last Chemo!  Take A Picture With Me!”  And people did and shared their own stories about dealing with, caring for someone or losing someone to cancer.  It was a powerful moment for me.

Then I started radiation.  I had heard from many people that radiation was a piece of cake compared to chemotherapy.  In many ways, it was but it also kicked my ass.  The position I had to be in for the treatments were extremely painful.  And having to go five days a week nearly killed me.  I had my first official freak out at the cancer center before a radiation session because they never told me how late they were running and I needed to get home to Oliver. It was not my best moment but hey, sometimes you need to scream and cry to get things done (just not too often).

The hardest physical part of 2015 was developing lymphedema and cording (axillary web syndrome) in my right arm.  I had heard about it.  I asked every doctor and nurse about it but was told not to worry about it.  But I got it.  I started physical therapy and it only got worse.  This lead to some major anxiety and depression.

I learned that survivorship is hard and in many ways more difficult than having cancer.  Once I was done with treatment, I was left to deal with the trauma and aftermath of what had happened to me.  I felt like I was expected to move on and get on with life.  But cancer still had a tight grip on me.  I could still feel the side effects of treatment and this was not letting me move on.  I’m still working on this and imagine I will be for a quite a while longer.

The hardest emotional part of 2015 was losing friends to cancer.  I only met Christine once at a party but her spirit and love for her son made a huge impact on me.  She had gastric cancer and diagnosed terminal immediately.  I think about her often and give Oliver an extra squeeze when I do.  I also lost my good friend, Jessica.  Jessica had Ewings Sarcoma and while her life with cancer was difficult, she fought all the way with a thumbs up and a smile on her face.  Her positivity through cancer’s rough times was a model for me on how to “do cancer.”  I don’t think I could have gotten through my own experience with as much humor and grace if was not for her guidance.  I miss Jessica terribly.  Sometimes, when I can’t sleep at night, I still check to see if she’s on Facebook for a chat.  Then I remember.

Amidst all of the pain, fatigue, and desperation that cancer can bring, there was also so much joy.  In the spring, my hair started to grow back.  And even though it came back white, I was just happy to have hair on my head so that I wouldn’t need to wear a scarf in the warm weather.  I took a much needed family vacation to Martha’s Vineyard.  I needed that time away from cancer to relax, lay on a beach, eat lobster and snuggle with my family.  It was an incredible trip.  I celebrated my one year cancerversary on August 1.  I remember thinking that making it to the year mark would be an impossible task and I wasn’t sure how it would happen.  Somehow it did though.  The year had gone slowly but I was able to reflect on how strong I had become and how powerful.  I also celebrated my one year mastectaversary on September 5.

Of course, the best part of 2015 was my son, Oliver.  I’ve said it before and I’ll say it again, he is my everything and I am so proud to be his mommy.  This year, he started preschool for the first time and he loves it!  We took Oliver to see his first movie, The Good Dinosaur.  We filled our days with trains and train rides, even going as far as Peekskill to see Amtrak and a railroad crossing!  But, most importantly, I have been healed by his daily hugs.  

2016 will be here in a few short hours and with it will be coming new challenges and new joys.  I will be having my long awaited breast reconstruction, the DIEP Flap surgery.  I will be starting Zoladex, an ovarian suppressor, once I am healed from surgery.  I don’t know what side effects these will bring but I’m hoping for quick healing and no side effects.  I deserve a break.

This year, I’m hoping to partner with my amazing new physical therapist, Cynthia Shechter of Shechter Care (I’ll be introducing her to you on this blog soon) to change the ways doctors prevent and treat lymphedema pre and post mastectomy.  Cynthia has changed my life in so many ways and she fights for women with lymphedema every day.   I can’t wait for you all to meet her.  Hopefully, we can get things changed in this country around lymphedema and lymphedema education.

I don’t know what else I am hoping for in 2016.  I used to plan so much ahead but it’s hard to do when you are still dealing with cancer’s leftovers.  I hope to keep on living life joyfully and to gain new experiences.

Finally, I want to thank all of you who have been reading and supporting me and my blog.  I have so much respect for those of you who have been blogging long before me and who have paved the way for breast cancer advocacy and education.  For those who have just been diagnosed and have found my blog, I wish you a year of strength and healing.

Happy New Year to all of you!

Welcome, 2016!  Let’s kick some ass!!!

 

Love,

Carrie


1 Comment

Enjoy The Rest Of Summer

coney

Friends,

Ken, Oliver and I will be taking a staycation for the rest of the summer.  While I can’t quit social media cold turkey, I will be taking a break from blogging until we get back…unless something incredibly dramatic happens, of course.  Enjoy the last days of summer!  I know we will.

Here are some older posts to look back on in the meantime.

How I found the lump.

On bravery and cancer.

Preparing for hair loss with cute scarf ideas.

Chemotherapy sucks.  Here are the side effects from weeks one, two, three and four of AC.

That time I had to explain hair loss to my not even two year old.

An eyebrow tutorial, because I had fabulous eyebrows before this shit show called cancer.

Dealing with the prospect of not having any more children.

I got NYC to celebrate my last day of chemotherapy with me and it was awesome!

The day I decided to take my scarf off and let the sun shine on my head.

What to expect at your first radiation treatment.

I have been dealing with axillary web syndrome or cording.  And it sucks.

We can’t all be perfect, positive outlooking (is that a word?), brave cancer fighters all the time.  Sometimes we get to lose our shit.

10 ways to entertain a toddler while undergoing cancer treatment.  Because even cancer doesn’t give you a day off.

15 random things about me.

And finally, wise words from Dr. Seuss.


11 Comments

That Time I Lost My Shit At The Cancer Center

If you have never been through cancer treatment and chemotherapy, you would think that 4 weeks is a long time to heal.  Four weeks in cancerland is nothing.  Well, not nothing.  It’s enough time for my white blood cells to bounce back and protect me without daily shots of Neupogen.  It’s enough time for my hemoglobin to return to normal so I don’t feel like I’m going to pass out once I reach the top stair of the train station.  It’s enough time for you to heal just enough for the next phase to begin: radiation.

Radiation, in many ways, was much easier than chemotherapy.  There weren’t many side effects.  I would get tired but I’m always tired.  I work, raise a two year old and get cancer treatment.  Any of those things can be causing my fatigue.  In other ways, it was much more challenging.  Having to be there five days a week meant that I would have less time at home with my son, more commuting on the subways and in traffic (if I was driving), less time to do my work, cook, clean…  Personal time?  What personal time?  Just thinking about it stressed me out.

They did not love me, down in radiation.  I do not think they were used to the full time working mom who did not have an open schedule.  I booked my appointments weeks in advance since each day I’m in a different place at a different time.  The woman on the phone who booked my appointments was very kind but I could tell, as each day I would give her a new window of free time, she would get a little annoyed.

To my own credit, I called to book my appointment with the radiation oncologist 2 1/2 to 3 months before I was due to get the treatment.  I told them that my work for the spring was booking up and that, if I needed to be at the hospital daily, I would need to schedule as early as possible so I would know what work I could accept, what I should turn down and also, to arrange child care.  “We don’t book that far in advance.  The oncologist won’t see you until you’ve finished chemo.”  “You don’t understand!  I work and have a two year old.  I need to plan ahead.  If you don’t book me now, I probably won’t be able to be flexible.  You understand that, right?”  She said she would speak to the doctor and call me back the next day.  I never got a return phone call.

Flash forward three months later and low and behold, booking appointments was tough.  Not only were they fairly booked, they were just getting rid of their early morning and late night hours.  Imagine!  In New York City!  Having to go to the hospital for treatment five days a week but they are only open during business hours!  I don’t know why, but I took this as a personal offense.

No, I did not like radiation treatment at all.

But I went.  I went at my scheduled times and, unless the MTA had it in for me that day, I was on time, if not early.  One day, the day I had gotten the results of my genetic testing (I did not get much sleep the night before and even though the results were good, it was an emotional day) I got to the cancer center 15 minutes early for my treatment.  To celebrate the good results of my genetic testing, I had gone out for wine and oysters right before.  After about ten minutes of waiting in the waiting room, because I’m a cheap date, I put my head down and dozed off.  45 minutes later I woke up.  They hadn’t called me in.

I walked up to the receptionist’s desk.  “Hi, my appointment was 45 minutes ago and I’m still waiting.  Do you know how much longer it’s going to be?”  She called to the back where the radiation machines were to inquire about the wait.  She hung up.  “It’s going to be at least another half hour.”  Her face was blank.  Unapologetic.  Frozen.

“Excuse me?”

“Your machine is backed up.  It’s going to be a while.”

“But I have to pick up my son.  I was supposed to be in 45 minutes ago.”

Blank stare.

“What am I supposed to do?”  The tears started to form.

Blank stare.

“I’m not asking a rhetorical question!!!!!  I have a two year old at home, I have to let the sitter go, but I’m told that skipping radiation is a dangerous thing so I need you to TELL. ME. WHAT. TO. DO!!!!”

Blank stare.

I started hysterical crying.  “What am I supposed to do?!?  Can’t you put me on another machine?”

“No.  And those are backed up, too.  We can’t just take someone off the table.”

“I understand that but, what am I supposed to do now?  WHAT AM I SUPPOSED TO DO!!!!!!!

I started freaking out.  A very nice old lady, who was just as upset about the situation as I was started yelling, “Give her my spot!  Give her my spot!  She has a child at home!  Can’t you get her in?”  It was very sweet but she had a different machine than me.

I sat back down in my chair, angry, resentful of the situation and helpless.  What was I supposed to do?  I really didn’t know.

Finally, the chief of radiation came out to talk to me (that should give you a clue as to the scene I must have been making).  I told her everything.  I told her how I tried to schedule these appointments months ago just to avoid this very situation.  I told her that I was assured that if my machine was running late, I would get a phone call so that I could make arrangements.  I told her that it was not fair that, with the cut in hours, the wait and my time on the table, I was being asked to choose between my finances, my health and my family.  “Which would  you choose?”  I asked her.  “Which would you choose?”

I was sobbing uncontrollably at this point.  She was very calm and patient with me.  She was doing her best to calm me down but all I wanted to hear was some sort of solution.  That wasn’t what was happening.  “We let you know when you make the appointment that you should leave an hour.”  “It’s been an HOUR AND A HALF AND YOU STILL HAVEN’T LET ME IN!!!!”  She couldn’t argue that.  She just apologized.  She gave me her card and told me to call her if there was a day that I was coming in where my schedule was tight or I needed to go home to my son.

15 minutes later, I was on the table.  I got home over an hour late, exhausted from my ordeal.

I have been through so much since my diagnosis.  I’ve cried.  I’ve yelled.  I’ve laughed.  But through it all, I think I’ve kept it pretty much together, considering the circumstances.  This was the first, and hopefully the only time where I really and truly lost it.  Uncontrollably.  The kind where you hear your voice and it’s like an out of body experience.  You hear yourself yelling.  You feel the vibrations in your chest.  But it’s outside of you.  Outside your control.

Part of me felt a little guilty for letting my emotions get the better of me rather than just finding a way to deal with the situation.  The other part of me feels like I was due for this kind of freak out.  That it’s strange that it hadn’t happened before.  Things have gone wrong in this process of having cancer.  But this was the first time I felt threatened and disrespected and that sent me into a rage faster than a bolt of lightening to the ground.

The next day, I came in at 10 am for my appointment.  “Hi, my name is Carrie and I have a 10:00 appointment.”  Suddenly, the door opens.  “Carrie!  Right this way!”  A man I had’t met, with a big smile on his face stretched out his arm, welcoming me inside.  As if they were waiting for me to come in.

There was this one time I lost my shit at the cancer center.  It totally paid off.


3 Comments

First Days Of Radiation

You’ll remember that a little over a week ago I posted about my experience getting fitted for the radiation machine.  On Monday, I started my first of fifteen sessions of radiation treatment of my right breast and clavicle.  There can be some side effects like a burn similar to a sunburn where radiation is being applied and fatigue.  But the general consensus is that if you have done chemotherapy, this will be a walk in the park.

Even so, I went into this experience just like I do with everything that is new and unknown to me in this cancer journey; nervous and apprehensive.  What if the radiation beams hurt?  When if they turn it up too high and it burns me?

Where did I get these ideas from?  We all know that I have a creative and vivid imagination.  It’s in these particular situations where it doesn’t serve me well.

Putting on a happy face so I wouldn't feel scared.

Putting on a happy face so I wouldn’t feel scared.

So chic, as always, in the hospital robe.

So chic, as always, in the hospital robe.

Ken showing his support by posing with me in front of the radiation machine.

Ken showing his support by posing with me in front of the radiation machine.

Once I got called in and changed, I met my radiation nurses, Heather and Horris.  Just like all the staff at NYU, they are wonderful.  They took time to show me around the radiation room and the radiation machine, pointing out what each part of the machine does and how it moves.  They told me that I could ask any question at any time.  This really put me at ease.  Ken gave me a kiss, bid me farewell as he headed into the waiting room.

I was then placed on the table where Heather and Horris attempted to put me in position.  This is where things started to go downhill.  It took a very, very long time to get me into position.  I knew from when I was being fitted that the way I had to lie on the table wouldn’t be comfortable but suddenly it seemed very painful.  My arms are stretched above my head as far as they can reach, my head is turned to the left and my right breast is angled down through a hole for the radiation beams.  This is the position of contortionists.  I even think I saw this used as a form of torture on The Tudors a while back.

When I go into this position, my right shoulder starts to twitch and, after a while, spasm.  But I’m not allowed to move.  Not a muscle.

That’s only part of it.  For some reason on this table (not the one I was measured on), the edge of the opening digs into my rib cage and the cuts across my diaphragm making it very hard to breathe.

Imagine not being able to move…AT ALL!!!!….being stretched and contorted in completely unnatural ways and then being told you were going to have to hold that position for 25-30 minutes while they took x-rays and delivered treatment.  “WHATTHEFUCKAREYOUKIDDINGME????!!!!????” is what I think I said.  They weren’t kidding.

But it wasn’t a half hour.  Because I was in such discomfort and they couldn’t get me into the right position for the machine, I was lying there like that for a good hour.  I don’t think I have been in that much pain in my life.  I thought this was supposed to be easy!!!!

When I talked to my radiation oncologist about this, she said I had to be in that position.  “Well, can’t I just turn my head?” “No.” “Well, can’t I just move my arms down, just a bit?” “No.”  Basically, it’s tough titty for me (ha! get it?).  I have to be stretched out in that position because that is how the beams get to my breast and clavicle accurately.  If I were to turn my head or move my arms, the radiation beams might hit my lungs and that is something we don’t want.  She showed me some pictures.  I’m not sure I can accurately describe each one, but I’ll try.

All the views of my insides.

All the views of my insides.

View of my breast, lungs, ribs, spine.  The box indicates the area that is being radiated.

View of my breast, lungs, ribs, spine. The box indicates the area that is being radiated.

Imagine that hole is where my head should be.  You get a birds eye view of how the radiation beams are hitting my body.  1)Through the back and out and 2) from the side (indicated by the yellow beams).  The blue and purple colors indicate where the radiation is hitting my breast and body.

Imagine that hole is where my head should be. You get a birds eye view of how the radiation beams are hitting my body. 1)Through the back and out and 2) from the side (indicated by the yellow beams). The blue and purple colors indicate where the radiation is hitting my breast and body.

This image also shows where I am being radiated.  You can see clearly that it is affecting the breast and then, at the top, my clavicle.

This image also shows where I am being radiated. You can see clearly that it is affecting the breast and then, at the top, my clavicle.

Finally, it's as if you are looking down and into my body.  That big thing in the center is my heart, my lungs are on either side.  You can see my breast and clavicle getting the radiation.  You can also see that the radiation is hitting some of my ribs but just barely missing my lung.  This is why I need to be stretched out the way I am, so that my lung does not get hit by the radiation.

Finally, it’s as if you are looking down and into my body. That big thing in the center is my heart, my lungs are on either side. You can see my breast and clavicle getting the radiation. You can also see that the radiation is hitting some of my ribs but just barely missing my lung. This is why I need to be stretched out the way I am, so that my lung does not get hit by the radiation.

Getting radiation therapy does not hurt.  I do not feel the beams.  If the machine didn’t buzz, I wouldn’t know it was happening at all.

So why put myself through this?  Why get radiation?  According to Breastcancer.org, radiation therapy, “is a highly targeted and highly effective way to destroy cancer cells in the breast that may stick around after surgery. Radiation can reduce the risk of breast cancer recurrence by about 70%”  Cancer cells that are undetectable can linger after surgery and if left untreated, can cause a recurrence or spread somewhere else in the body.  Since I am high risk (I have a grade 3 which is a fast growing, poorly differentiated tumor), we need to give me every therapy known to man that will attack my kind of cancer.  For me that means chemotherapy, radiation, and hormone therapy.

And what is radiation therapy exactly?  It is the use of a high-energy beam to damage cancer cells.  In the process, it can also damage normal cells but it does more harm to cancer cells that are, “very busy growing and multiplying — 2 activities that can be slowed or stopped by radiation damage. And because cancer cells are less organized than healthy cells, it’s harder for them to repair the damage done by radiation. So cancer cells are more easily destroyed by radiation, while healthy, normal cells are better able to repair themselves and survive the treatment.”

Tomorrow marks my first week of getting radiation.  Although the treatments are not as long, they are not getting easier as far as discomfort goes.  It’s just something I have to suck up and deal with.  But so far I have not been experiencing any burns or unusual fatigue.  I hope that continues.

What was your experience like with radiation?


2 Comments

Prepping For The Next Step In Treatment

This week is the first week (I think) since my cancer diagnosis that I have not been inside a doctor’s office, an infusion chair, hospital bed, etc….  This is the first week I have been free from all things cancer.  I have gotten to pretend, for a bit, that life is back to normal.  No more prodding, poking or sticking.  This week some of my energy has returned.  Maybe it’s because I’m not running around all over the place but yesterday I took a nice brisk walk and it felt energizing.  This time last week, the same walk would have sent me into complete exhaustion, although, I never would have let anyone know.

This is all short lived because next week I start my radiation treatment.  I am fortunate to qualify for yet another clinical trial where I will be getting stronger doses of radiation at a time for a shorter total treatment period.  It is my understanding that women with breast cancer who need radiation must get it for 5 days a week for between 5 and 7 weeks in a row.  In this trial, I will be getting radiation for 5 days a week but for only 3 weeks.  The other thing that sets this trial apart from most other radiation treatment is that the radiation will be administered while on my stomach rather than my back.  This is a technique that was in part pioneered by a radiation oncologist at NYU, Dr. Formenti.  This face down position makes it less likely that the radiation will affect the lungs or heart, which can happen in the back lying position.  And I’m all for that!!!!

Dr. Formenti is leaving NYU so she will not be my radiation oncologist but my current doctor, Dr. Perez is continuing the trial and seems wonderful.  I can’t complain.

Last week I was fitted for the radiation machine.  Yes, I get a custom fit!  I’d rather get a custom pair of shoes or coat but hey, I guess radiation tailored especially for me is ok given the circumstances.  I was really scared going into this day but there really was no reason for that.  So I’ll share my experience here just in case any of you will be starting this process soon and want to know what to expect.

IMG_0651I had lay flat on this bed.  What you can’t tell from this picture is that on the right side, there is a hole for where my breast would be.  This is where they are going to radiate.  I walked in and saw this machine.  It was intimidating and all I could think was, “It looks like a big vagina!!!”  I didn’t share my thoughts with the nurses.

I was asked to disrobe (I was naked from the waist-up) but it was weird because there was a male technician in the room with me.  The nurse saw me give a sideways look but assured me that he’s seen it all.  He told me that he has been doing this for 30 years and that he’s seen it all.  I believed him so off came the robe.

At first, I was asked to lay on my back.  This felt vulnerable to me.  They placed stickers with wires in them on my breast and on my scar and I waited there until my doctor came in to make sure all of the stickers were in place to her liking.  Then they asked me to turn onto my stomach.  They told me not to move, that they would move me from that point on.  I know that they were doing this because they have to get my position perfect but it made me feel like a helpless sick person.  I didn’t like the feeling so I made a joke about how I wouldn’t help them if they asked anyway.  I’m sure they’ve heard that one before but they laughed anyway.

IMG_0654IMG_0655 IMG_0656

IMG_0652This is the position I was eventually put in.  I have to hold onto a bar in front of me and turn my head to the left.  This doesn’t look so bad but when you are told you can not move a muscle and have to hold this position for 10 minutes, it starts to get a little painful.  Next, I was inserted into the machine where my measurements were taken.  This will give them the parameters for when I start my radiation treatment next week.  At some point I must have taken a heavy breath and I was told not to do that again, that the machine measures within millimeters and that a big breath like that could throw it off.  Yikes!!!!!!

This part of the process took about 10 minutes or so.  As I was taken out of the machine, I was able to relax my arms.  And then (here’s the exciting part!!!!) I GOT MY FIRST TATTOOS!!!!!  I didn’t know until I met my oncologist that I would need tattoos to mark the parameters for the machine.  But I do so, I got 5 little dots.  My first tats!!!!!  I asked if they could write, “Tough Bitch” while they were at it.  The answer was, predictably, “no.”

IMG_0653Can you see the little dots there?  I hate them.  I think they look like big blackheads but, what can you do?

After that, I was free to go.  I got to check out the imaging center as I left.  This is what they were looking at while I was in the machine.

IMG_0657 IMG_0658On the left, that’s my insides!!!!!!!!  Right next to that is my breast.  Then on the bottom is an aerial view.  You can see my breast, my spine, my heart and my lungs.  So cool!!!!  I liked being able to see what my doctor’s saw.  I don’t know why but, it makes me feel in control.  The nurses were happy to tell me about it, which was great.  And they were also excited to take the pictures for my blog, “Shoot it this way!!  Oh, get the machine in the next shot!!!  That will look really cool!”The NYU staff is great.

I’m scared going into this next step, but the end of my cancer treatment is only a few weeks away.  That is something to look forward to.  Soon, this will all be over!


Leave a comment

More Diagnosis News

Today I met with my breast surgeon to check on my breast that is no more and to learn about some results I was waiting on from pathology of the tumor.  What I didn’t realize when I was first diagnosed is that when you get a biopsy, MRI, mammogram, PET scan, you only get a part of the story.  To tell the whole tale, at least with my cancer, we needed the whole tumor, the whole breast and several lymph nodes.

The first thing I was hoping for was to get my drain out today.  It is very irritating and I’m aware of it all the time.  But in the last 24 hours I was still releasing a little too much fluid for them to remove it, so they didn’t.  GRRRRRRRRR!!!!!!  I am looking at my drain right now and there’s almost nothing in it.  I know that they were going on the only information they had and none of us remembered to bring our crystal balls but it would have been nice to say, “See, nothing left!  Get it the fuck out of my body because it’s pissing me off and it’s gross!!!!!!”  No such luck.

As for the rest, we have some positive news and some not so terrible but not the news I was hoping for.  There was the potential that my stage would be upgraded to a stage 3 from a stage 2B if the shadow that appeared on my MRI between my two masses was part of one of the masses or one complete mass.  Thankfully, that is not the case. I have two masses, one measuring 3.0cm and another 2.1cm.  However, what the MRI was showing was that there were cells in that area that were pre-cancerous.  Another one of those suckers was trying to grow.  Yay, we got it in time!!!  Boo, for what that probably means for my treatment.  They also found cancer in 2 lymph nodes when we were sure of only one.

Now, this is not terrible.  The news could have been worse.  But my surgeon said that this means that my oncologist will probably recommend radiation in addition to chemo.  That sucks.  I don’t know much about radiation but I’ve heard that physically it’s not to hard to take.  It’s just an inconvenience.  I will have to have treatments every day, Monday through Friday for several weeks.  It’s a real PITA.

There’s still more I don’t know.  In my original biopsies I got a result of HER2 negative, which is good.  But we needed to test the whole tumor to make sure that both tumors had the same status.  I forgot to ask about this today but I’m sure it will be discussed on Monday when I see my oncologist.

So, we know a lot more now but we still don’t know everything.  Not the worst news today but certainly not the best.  I seem to be taking it really well.  I always prepare for the worst.  So I was prepared to hear the word “radiation.”  I was also prepared to hear “stage 3” and I didn’t get that, so there’s my glimmer of light.

I have my pathology report in front of me now and it’s like a different language.  I started to google it but stopped myself.  It’s a dangerous path.  I just hope my oncologist sets aside a few hours because I want to know and understand everything it says.  I want to know what I’m dealing with, what I’ve avoided by having this mastectomy, why I will have to endure treatment, will it come back?

So many questions.  So much to worry about.  So much to be grateful for.

This is me hoping that the news I was about to receive was good and I asked my facebook family to send good vibes.  You all delivered!

This is me hoping that the news I was about to receive was good and I asked my facebook family to send good vibes. You all delivered!