My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Lymphedema: 2 Years Later And Still Not Over It

Last year I wrote a very popular post, Lymphedema And How It Changed My Life.  It went viral…well, as viral as a lymphedema post was going to get.  It resonated with a lot of people.  I wrote about how angry I was at getting lymphedema after being diagnosed  with breast cancer and going through hell to get it out of my body.  I wrote about how uncomfortable it made me feel in my own skin; how ugly I found myself.  I wrote about how its very presence was a daily reminder of my cancer and the fact that it could always come back to my life in a terminal form.  I wrote about how sometimes I thought I would rather not live at all than live with lymphedema for the rest of my life.

I want to say that a year later all is well.  I want to say that a year later I’ve come to terms with this condition and the fact that it’s never going away.  I want to say that it no longer reminds me of the cancer that is in my blood stream right now, hiding, sneaking in and out of my organs.  I want to say that a year later, it’s under control.  But I can’t say these things.  I just can’t.

It’s a year later and I’m still pissed off.  I’m pissed that I have to take time out of my week, twice a week to keep my lymphedema under control.  I love my OTs at Shechter Care with all my heart and they are amazing, but even they are hoping that soon they can get me to the point where I don’t have to come so often.  I’m pissed off that I have to take time out of my day, nearly every day to pump my arm.  I’m pissed off that I have to go to sleep every night with my arm wrapped.  I’m pissed that I have to roll my wraps every night.  I’m pissed that when I look in the mirror, one of the only things I see is my big arm.  Nothing else.  I’m still pissed off that this was done to me.  I’m still pissed off that I didn’t get the care I needed at a time when this could have been kept under control.  I’m pissed that I don’t feel beautiful.

I’M PISSED!!!!!!

There are some positives.  This year I learned to wrap my bandages myself.  While I hate doing it, it gives me a sense of control.  I’ve been able to get swelling under control that way.  I believe that with hard work the swelling will decrease.  It already has.  It’s just take a super long time on me for some reason.

I also think that there are a lot of advances happening within the medical field.  More and more doctors are starting to understand this condition and are acknowledging that it’s a terrible condition to live with.  There are more studies and trials happening.  They are perfecting the lymph node transfer and other surgeries (although I don’t feel confident enough in the science to do it myself yet).  There is hope on the horizon.  I truly believe that there will be some real help for men and women like me in my lifetime.  Maybe not a cure but something that will make living with this condition so much easier.

I struggle every day knowing that I have to live with lymphedema the rest of my life.  I get depressed often.  But at the same time, I have hope.  I have hope that science will make advances.  I have hope that my body will finally cooperate and that there will be a turning point in my care.  I have hope that I will get this under control.

Maybe not today.  Maybe not tomorrow.  But maybe next year, on March 6, World Lymphedema Day, I’ll be writing a different blog post.  Maybe I’ll write about how I don’t hide myself.  Maybe I’ll write that I don’t think about my arm and cancer all day long.  Maybe I’ll write about how I feel like I can live my life confidently again.  Maybe, just maybe, I’ll be able to write about a major medical breakthrough.

One year…I can do one more year.


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1, 2, 3, Attack

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It happened at the gym a couple of months ago.  Earlier that day, I read about another young mother who had lost her life to metastatic breast cancer.  I followed her on Facebook and commented on her posts often.  I’m not sure she knew who I was but through her posts I felt I knew a bit about her and her life so the loss hit me hard.  And to see any child left without his or her mother just devastates me.

On that same day, the news was replaying a story of a young woman who lost her life to colon cancer (I think), but not before fulfilling a lifelong dream of being a contestant on Jeopardy.  I saw the headlines on my Facebook feed but didn’t really pay attention to it.

At the gym, I was doing my normal treadmill routine.  Running, walking, sprinting, walking….  I was doing fine, listening to music and watching the news silently on the screen in front of me.  I started one of my final sprints of the workout and on the news was the story of the young woman who died who had appeared on Jeopardy.  Suddenly, and seemingly out of nowhere, I broke down in tears.  I could not stop crying.  I had to hit the emergency stop because I couldn’t run anymore.  I was done.

The next time I went to the gym, the moment my heart rate went up, I started to get short of breath.  My heart began to flutter.  I felt weak and light headed.  It paralyzed me.  I tried to push through and I couldn’t.  I walked away from the workout.

The next few times I went to the gym, the same thing happened.  The moment I increased the difficulty of my workout, my body would shut down.

I mentioned this to my therapist and she said I was having a panic attack.  She advised that I alter my workout, either by going on a different machine or slowly working up to a more vigorous workout on the treadmill.  If I felt the attack coming on, to not stop but to slow down.

Her advice worked the first time.  I haven’t had an attack since.  But it shocked me that this happened.  I thought I was doing so well at managing my anxiety.  I guess the fear and anxiety of cancer is always there.  It might be dormant for a while but the monster could always be woken.

Has anything like this happened to you?

Did you start getting panic attacks after you got cancer?

 


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Two Places At The Same Time

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You may have noticed that I’ve taken a blogging hiatus.  I just haven’t been able to bring myself to sit in front of my computer and write about cancer lately.  I’ve had things to write about.  Nothing major, just life’s little post-cancer experiences.  It’s just…I don’t know.  I’ve opened up my blog to a blank page, stared for a while and decided that I’d rather just watch some tv or do thing online.  I haven’t even been reading the blogs (sorry friends, I haven’t forgotten about you).

I think this is coming from the fact that I’ve been all consumed with life post-election and Trump being inaugurated as our 45th president.  I haven’t been sleeping.  I’ve been obsessed with the news, both on television and of the printed variety.  I’ve been feeling helpless so I have been spending hours on the phone trying to get through to my Senator and Congressperson.  I’ve been signing petitions.  I’ve been sharing news stories on Facebook and commenting on others.  I’ve been going to protests and marches.

This obsession with resistance is the same obsession I had with breast cancer.  When I was diagnosed and up until a few months ago, I scoured the internet for information.  I lost sleep over it.  I read every article, blog and commented on everything.

But now, I just don’t have the mental and emotional space for both cancer and my new America.  I think my brain would explode if I spent too much time in both worlds.  So, I’ve left Cancerland for a while.

I’m not gone for good.  Even as I write this (it feels good), I’m thinking of all the things I haven’t written about in the last month.  Some good.  Some not so good.  But it seems, at least for now, my head and my heart can’t be in two different places at the same time.

I hope to write again soon.  I’m having my next surgery on Thursday, the next step in my reconstruction and Lymphedema Awareness Day is coming up.  I definitely want to write for that.

I just wanted to say, I’ve missed you all.  I hope you have missed me.  And don’t be offended if I haven’t read or commented on the things you have written.  It’s not personal.  You are still my community.

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This was at The Women’s March On Washington.  I’ve loved being part of the resistance and raising my voice.

 


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On Making It To 40 and A Birthday Wish

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Today is my birthday.  Today I turned 40 years old.

40.

40!!!!

I hear that number and I feel conflicted.  On one hand, I don’t feel like I’m 40.  I feel more like 25, like I’m still finding myself and getting comfortable in my skin.  40 used to seem so old.  And I’m not old at all!  I still have so much to learn and discover.  I can’t be 40. On the other hand, I’ve made it to 40.  Just over two years ago, I wasn’t sure that was going to happen.  I heard the word, “cancer” and didn’t know if I’d reach any milestone.  But here I am, and it seems to me that 40 is something to be celebrated.

I wish I have given some thought as to what I want to define the next decade of my life.  Beyond being surrounded by my loved ones, creating theatre and traveling, I don’t know what I want.

I do know that I want this year to be filled with the new; new restaurants, new routes through the park, new travels and more.  I want to expand myself.  I want to grow.

You all know that I am not a “cancer is a gift” kind of gal and yet, I feel as though I have been given a gift to continue into this new decade.  When so many of our brothers and sisters have been lost to cancer’s oppressive power over our bodies, I can’t help but reflect on the fact that, in many ways, I am one of the lucky ones.

I have but one birthday wish from all of you.  Many of you who are reading this went to school with me, which means that this is the year that you also turn 40.  The American Cancer Society has decided that women who are not high risk for developing breast cancer begin mammograms at age 45 and those with family history and other risk factors begin at age 40.  I have mentioned on this blog before my dissatisfaction with these new guidelines.  As a young breast cancer survivor who found the lump through a self exam, I think we need more tools and resources, not less.

So, what I want from all of you, women and men (yes, men get breast cancer, too), is for you to feel your boobies.  Know your body.  Know what is normal for you so that you can identify when something is wrong.  Advocate for yourself.  If you feel that you need a mammogram, find a doctor who agrees with you and get one.  Do it every year.  Every. Year.  Feel your breasts every month.  Every. Month.

If 1 in 8 women will develop breast cancer in their lifetime, then I am not the last one that I know who will go through this ordeal.  We need to be vigilant, to do the best for our bodies that we can so that we can remain as healthy as we can.  We need to educate ourselves and each other and support one another.

So please, this year, get schedule and go to your mammogram (it’s not that bad) and learn how to do a self breast exam.


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A Letter To Oliver On His Fourth Birthday

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Dear Oliver,

I think I start every year by telling you that you are the light of my life.  This year is no different.  It’s amazing to me that I can be just as in awe of you, if not more so, as the day you were born. I feel like you are the same incredible little boy that you have always been, but now you are a year older.

This is the year where I feel like you have really become a little boy.  You have strong opinions and wants.  You speak with so much expression.  You are dramatic like me.  Your talents are starting to show.  I’m getting a glimpse of the person you are going to be.

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You still love to make people laugh.  You like to make up stories and words.  You like to dance around making funny sounds.  You like to call people silly names.  Your number one goal in life is to see people, especially me, laugh at your jokes.  And you truly are funny.  When we came home from parent teacher conferences this year, we said, “Your teacher said that you are doing a very good job at school,” to which you replied, “And they said that I am a funny guy?”  They did, in fact, say that.  They said that they whole class laughs at your jokes and that several of your friends said that you are the funniest person they know.

 

You continue to be one of the most gentle, kind hearted people I know.  You are always taking care of me.  After my surgery this year, you never left my side.  You would walk me to the bathroom so I wouldn’t have to walk alone.  “Walk slowly, mama.  Be careful.”  And you wouldn’t leave me until I was safe back in bed.  You always ask about my “swollen arm” and kiss it to make it better.  You are still trying to wrap your head around the fact that I will have this condition my whole life and that a kiss doesn’t make it all better.  But that doesn’t stop you from trying.  You are always talking about friends who have felt sad or angry during the day and how you have hugged them to make them feel better.  Your love is what this world needs.  I think when you grow up, your love and caring for others will be the thing that shapes who you are.  I think you are going to change the world!

This year you have become more adventurous.  You like roller coasters and other rides.  You like to run right into the waves at the ocean, even in your clothes in the cold weather.  You take risks that you have never taken before.  It’s awesome to watch you push your limits and discover that you can do things you never thought possible.  You are beginning to understand that taking risks can reap rewards.

You still are obsessed with trains.  You like other things like blocks, legos and puzzles but you are passionate about trains.  You love learning all about them, from old steam engines to modern bullet trains.  You can’t get enough!

You have learned so many new things this year.  A few of them are…to put on  your clothes and shoes by yourself, to poop in the toilet, to write your name, to begin to read and spell, to add and subtract, to put a puzzle together by yourself, to ask life’s deep questions (“Am I going to die?”  “Why am I here?”  “How was I born?”  “Why does night happen?”  “Why does the mood follow us?”), to use big words like, “frustrated,” and “deflated,” to gallop, to sing whole songs that aren’t nursery rhymes (“Let It Go”), to reenact parts of the musical Oliver, for which you are named, and to make yourself cry on cue.

You love to play with your trains, take train rides, go to the park and run around, ride on your scooter, play with your friends, play with babies, go to school, sing, make up songs and eat sweets.  Your favorite books are The Big Book of Trains, Insects, Snakes, Train Song, The Gingerbread Man, How Do Dinosaurs Say Happy Chanukah?, The Three Bears,  and so many more I can’t even remember them.  Your favorite foods are muffins, lollipops, pancakes, runny eggs, peas, corn, turkey burger, tortellini, ham and cheese sandwiches, ramen (not the cheap, $1 kind but the real stuff), grilled cheese, mac and cheese, ice cream, bananas, grapes and blueberries.  You love to bake with daddy.  You are starting to love the arts; singing, dancing and acting.

I am proud of you every single day.  There isn’t a moment that goes by where I don’t realize how lucky I am to have landed a son like you.  You are my everything.  I love you to the moon and back, the stars and back, the planets and back and the galaxies and back.

Happy 4th birthday!


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The Droopy Boob

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“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?


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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

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            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.