“Bell” Of The Ball

Lymphedema sufferers, this is our time! We need to seize the day! Gone (for now) are the days of sleeves that are too tight; that constrict our already restricted flow. Dare I say, lymphedema fashion is en vogue?  Bell sleeves, slouchy sweaters and kimonos are in! And I just can’t get enough.  Like seriously, I have $2000 worth of clothes in my Anthropologie cart (narrowed down, embarrassingly) that I’m waiting to go on sale. But there’s so much to choose from! I might need to start a GoFundMe for a new wardrobe!!! I just can’t help thinking that I should stock up now before everything gets so skinny and tight again.

I have gathered an array of clothes that I’m just simply in love with that will let our arms breathe and that we will look absolutely adorable/beautiful/sexy in. All of the tops I have chosen all come from stores or websites where there are several styles to choose from, not just one. I tried to represent a range of budgets, from the very affordable to sell your kidney. Whatever you decide, if you end up getting one, send me a picture. I’d love to see it!

To say that I’m obsessed with everything on Anthropologie right now is a gross understatement.  They have so many options for beautiful tops that would be comfortable and forgiving on any lymphie arm. And right now they are having a 20% off sale on all tops and sweaters!

ASOS is an amazing site with too many choices. I find that some of their clothes are a little “out there” and trendy but they also have some wonderful basics and statement pieces. I love this site because they range from very affordable to pricey and carry a range of sizes including petite, tall and plus size lines. In their search bar I put in “bell sleeve” and “kimono” but just a basic search of their sweaters and tops revealed a plentitude of options.

I’m starting to really adore Eileen Fisher. The look is so easy going. I’m obsessed with the velvet wrap dress. All the clothes, though, are very expensive but I’ve heard the quality is great so if you can afford a piece or two, it will probably be a staple in your closet for years. They also have outlet stores so, maybe you can get lucky there.

I recently went into Madewell in Williamsburg, Brooklyn and was really impressed by the style and quality of the clothes. I was so excited to see so many choices in lymphedema friendly styles. I think they’re pretty affordable as well.

Oh Target, how do I love thee? Let me count the ways! I can’t ever leave target without a ton of stuff in my shopping cart. And these days, they have so many choices that fit so well. I just can’t help myself!

Finally, if you type in “bell sleeve top vintage” or “bell sleeve sweater” on etsy, you get an array of amazing and affordable (mostly) items that are one of a kind. Now, of course you don’t get to try anything on this way but oh, my god!!!! It’s so much fun!

So, I think I need one of those closets that Carrie got in the Sex and the City movie in order to get all the stuff I want.  It’s never going to happen but I will get some.  I’ll post when I do.

Where do you shop for clothes that fit your Lymphie arm?

If given the choice, what would you buy from above?

Do you have any great resources to share? Share in the comments below.

Oh, Snap!

There is a sound.  It’s not quite a sonic boom but it’s fast and forceful.  The camera cuts to birds flying out of the trees, fleeing from the danger that the sound must bring.  The camera cuts to me, standing in shock.  As the camera pans to a closeup of my face, you can see tears welling up in my eyes slowing, promising an overflow within moments.  As dramatic music begins to swell in the background, I breathe in suddenly, as if I’d been holding my breath for hours.  Suddenly, a single tear escapes my eye, my face relaxes and the audience realizes that this is a moment of relief.  A release.  That all is well again.

This has been one of my many fantasies that I’ve had about my cords, or axillary web syndrome, breaking or snapping.  I have suffered from persistent and stubborn cording for almost three years now.  And I do mean “suffered.”  While I have had excellent range of motion, the cords have been extremely painful.  Especially my armpit.  Every time I lifted my arm, it was a tight, stretching pain.  I could feel the pull go deep into my chest wall beneath my once upon a time breast and into my scar tissue, down my arm and into my hand and fingers.  Does that make your skin crawl?  Well, it’s not pleasant.  But it was my normal.  I actually got used to being in discomfort.

For those of you who don’t know what cording is, it can occur resulting from a sentinel node biopsy or axillary lymph node dissection during a mastectomy.  One can develop rope or string like structures in your arm.  This can inhibit range of motion and be quite painful.  It is usually diagnosed by a physical therapist or lymphedema therapist (it is separate from lymphedema but can sometimes go hand it hand).  It is posited that most cases for cording resolve within a few weeks to a few months with stretches and therapy.  Read more about axillary web syndrome here.

But I stretched.  I stretched every day.  I went to therapy once or twice a week.  We pulled the cord.  We massaged the cord.  We dug into the cord.  We sang to the cord.  We breathed deeply into the cord.  And we definitely begged the cord.   And each time, nothing.  It would not move.  It was intent on staying exactly where it was.

Then, last week, I was laying on my couch watching tv and I was stretching my arm and with my left hand, stretching the cord as my OT does at her office.  I do this a lot in hopes that it will do something.  It never does.  But last week, out of nowhere I felt the most gentle pop.  It wasn’t even a pop.  It was an effervescence.  And suddenly, in the area where I was experiencing the most pain, the pain was gone.  There was some soreness where the cord had been but the rope like structure in my arm had suddenly disappeared.

Had I done it?  Had I achieved the impossible?  I went to be in disbelief, thinking I might have given it a good stretch.  But when I woke up, it was still gone.  I did it.  “I got you,  you fucker!!!!!!”

I had won the battle but not the war.  There were still more cords.  I still stretched every day.  One day I felt a pop in my wrist by my thumb.  I could always feel several cords there.  The pop felt like when I crack my knuckles (which I sometimes do with my wrist but near my pinky, never my thumb).  When I went to feel the cord, it was gone.  GONE!!!!!!

Then the other day, I was stretching again, and there was a thin cord.  Thin but mighty.  It caused a sharp pain every time I touched it.  But I was used to that pain.  I pulled it.  I tugged it, I dug under it and pulled it up.  Nothing.

But when I woke up in the morning, it was gone.  GONE!!!!!  Another one bites the dust!

I always imagined that when these cords went away, that there would be tears of relief.  But, the snap was so subtle and undramatic, that I didn’t know what to make of it.  With the last cord, I just continued putting cream cheese on my son’s bagel as if it were a normal morning.

I know that there are still more cords that I need to snap.  I can feel them and they are deep in my arm.  Really deep.  But I don’t feel hopeless anymore.  I know that I will get them one day.  My cords might be stubborn but so am I.

 

Did you have cording?

How long did it take for your cords to snap, if they did at all?

Do you have any magic tricks to make them disappear?

A photo taken of one of my cords. Please excuse my hairy armpits, lol! It was winter and I couldn’t be bothered.

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.

The Never Enough Doctor

Two days ago I went to see my physiatrist.  He is the doctor who monitors my lymphedema.  When I first went to see him when I developed lymphedema, I liked him a lot.  I liked how he took a whole body and whole mind approach to my care.  He’s the one who helped me start therapy when he could see my distress and depression.  He made it happen.  He talked about helping me get a healthier lifestyle to help with cancer prevention.  But the last few times I saw him, I felt like he had an unrealistic view of my life and how I can fit lymphedema care and a healthy lifestyle into my every day.

To my young or youngish survivor friends, I don’t know if this happens to you as well but I have found that throughout my cancer journey there has been a lack of understanding of what it’s like to have cancer and be a working mother.  I know that the majority of patients that are seen are in their 50s, 60s, 70s and older.  50s and 60s is not old in my mind but these women are often at a different point in their lives.  They don’t (usually) have very young children.  They are not (always) building their careers.  To raise a small child and still try to define myself professionally and creatively while having cancer and lymphedema has been my greatest challenge.  I succeed sometimes but feel that I fail a lot.  That’s because I have way too many priorities.  I’ve written about this before.  What do I prioritize?  My health?  My finances? My career?  My son?  My mental health?  My emotional health?  My relationships?  My free time to be me?  I’m often overwhelmed by these questions.

Nevertheless, because I have gained a considerable amount of weight in the last few months, I have chosen to put my health front and center.  I’m unhappy looking in the mirror and unhappy with the way I feel.  I wrote two blog posts ago that I’m having a lot of difficulty losing the weight despite exercising 4-6 times a week and eating a plant based diet (not vegetarian, not vegan just way more veggies and fruits).

The last time I saw the “never enough doctor,” I was told that I needed to exercise more.  I couldn’t figure out when to find the time, especially with the work schedule my  husband had at the time.  I was only weeks out from my DIEP Flap and feeling like hell physically and emotionally.  He told me to “call on my community” to help me get it done.  What he didn’t understand was that my community is also made up of working mothers who have very little (if any) free time.  This pissed me off.

With that being said, in recent months my husband and I have discussed the importance of my health and what sacrifices we could make to help get my health back on track.  This means that my husband is not running as much (he loves to run) so that I have time to work out.  He has also put on weight because he is not running as much as he did previously.  I am also rarely putting my son to bed at night.  When he was in preschool only 2 days a week and I spent more time with him, this wasn’t a big deal.  But now he is in summer camp 5 days a week and will be starting full day pre-k in the fall.  My time with him is getting less and less.  With having to exercise at night, I’m sacrificing some of that time.  But I’m doing it not so that I have more minutes with him but more years.

I’m also sacrificing some major sleep so I can go out, get my work done, do the dishes, pump my arm and wrap it at night.  It’s a lot!

I’m also now seeing a nutritionist.  She agreed that my eating habits are healthy and we are monitoring my progress.

I have to say, I think I’m doing a hell of a lot here.  But according to the “never enough” doctor, I’m…well…not doing enough.

“How long are you exercising,” he asked me?

“35-40 minutes, 4-6 times a week,” I said,

“What exercise are you doing?”

“I’m run/walking and when I can’t get out, I’m doing a kickboxing video.”

He stopped, turned to me, looked me in the eyes.  “You really need to do more.”

“More?  More than 4-6 times a week,” I asked?

“No, not more times a week.  You really need to do 60 minutes.”

What???!!!!????

“You need to do more land based activities. Are you exercising in the gym?”

“No, I run outside.  I go to the park.”

“You really need to join a gym so that you can monitor your heart rate.  It’s more disciplined that way.”

“But,” I said, “I’m having a hard enough time finding the time to do the exercise I’m doing.  Back and forth to a gym is 45-1 hour plus an hour of working out, not to mention waiting on line for a machine…we’re talking at least 2 hours 4-6 times a week!  When am I going to do that?”

“Well, you do what you want to do but, if you really want to lose weight, this is the way you are going to do it.”

Fucking Asshole!!!!!!!!!!!!!!!!!

So, I’m finally figuring out a way to get exercise into my life, which is what he asked me to do last time.  I’m pumping my arm every night.  I’m wrapping most nights.  “You’re not wrapping during the day as well?”  WTF!!!!!!??????!!!!!!!  But instead of trying to find ways to get more exercise into my life (a pedometer to watch my heart rate and this thing called youtube which, I’m sure, has a lot of videos on how to do more effective work outs at home or outside), he just said I need to do the thing I can’t feasibly find the time to do.

It’s not enough.  It’s never, ever, ever enough.

His message: You can’t have cancer and lymphedema and still have a life.

What I say: There has to be a balance.  I can’t do it all and I can’t live for my condition.  What kind of existence is that?

He said that he doesn’t need to see me anymore but I can come back if I ever need anything.  I don’t think I would go back anyway.  I need to surround myself with people who will help me live with lymphedema and the side effects of cancer treatment, not for it.

 

2 Year Cancerversary

It was two years ago that I walked into a breast surgeon’s office to have a lump in my right breast checked out.  I remember telling myself “It’s just a blocked milk duct.  You just finished breastfeeding.  They’re going to tell you it’s nothing.  You’re going to be fine.”  Your mind tells you one thing.  Your soul tells you the truth and prepares you for what is coming.  I remember the nurse or the resident or whoever she was looking at my sonogram.  Her face didn’t change.  It didn’t budge.  Her pupils did.  I remember them narrowing with knowledge.  “I’m sure it’s just a blocked duct,” she said.  “But I’m going to get the doctor.”

The doctor came in and looked for himself.  He wasn’t quite as adept at hiding what he was seeing.  He was all business.  After a quick look, he told me that he’d like to do 4 biopsies.  One for each lump he saw and two for my lymph nodes.  WHAT?????!!!!!!?????  My lymph nodes?  Why they hell would he want to check those?  The lump is in my breast!  There was so much I was about to learn.

I remember crying hysterically as he did those biopsies.  I couldn’t believe what was happening.  My life was changing and there I was, being punctured over and over again.  Once it was over he asked, “Do you have to be anywhere?  Can you stay for a mammogram?”  He called in a favor downstairs, asking if I could be seen right away, even though it was the end of the day.  He let me know that he’d have the results of some of my biopsies the next day, “just in time to ruin your weekend.”  He asked me to come back and to make sure someone was watching my son.  He then walked me down to get my mammogram.

The next day in his office, he said, “Well, it is cancer” as if we all knew it already and it was no big thing.  But it was a big thing.  It was a huge thing.  That day, my life changed forever.

That was two years ago but it feels like yesterday.  Time has gone so quickly yet so slowly.  It’s hard to explain.

At my one year cancerversary last year, I was still reeling from the trauma I had experiences both mentally and physically.  In my post commemorating the date, I chose to thank all of the people who helped me get through what was the worst year of my life.  I am still grateful to all of those people.

But this year is the year where I have tried to get back to living my life.  I have accomplished so much.  This year, I finished my weekly Herceptin treatments.  They didn’t really cause any side effects but they kept me going to the hospital every three weeks.  It’s hard to move on when you are constantly going to these appointments in the hospital but it kept me close to Nina, my chemo nurse who I always love to see.

Even though my lymphedema progressed into a non-reversible stage, I advocated for the kind of care I wanted.  I left NYU Rusk for physical therapy and found the amazing Cynthia Shechter at Shechtercare who is helping me learn to manage this condition.  It reminded me to trust my instincts and to never settle for sub-par quality of care.

I went back to work full time.  It was exhausting.  I still experience harsh fatigue and my body was still weak.  I also still have some lingering chemo brain.  It’s not horrible but I still forget to do things and can’t remember people’s names.  But I love my work and am glad that I can continue to do what I love to do.

I’ve tried to be a great mother to Oliver.  Many would say I accomplished that.  Being my own worst critic, I can think of a million things I did wrong or about all of the projects I didn’t get to do with him or all the places I wanted to take him, but there was never time.  But, he’s also so bright, funny and caring.  He did so well in his first year in school and grew so much.  I think I should take even just a little bit of credit for that.

This year has also been extremely challenging.  I had my DIEP Flap surgery.  I was warned that it was difficult to recover from but I didn’t quite believe it.  I should have listened.  I’ve never experienced that kind of pain before in my life.  I also underestimated how long it would take for me to recover.  Even though I went back to work after 6 weeks, I still feel like my body is healing.  I’m also still not used to the scars and dissatisfied with the results.  I know that it is a work in progress but, no matter what the plastic surgeon does, I will still be unhappy with the massive scarring on my body.  I just can’t get past it.

Emotionally, moving past cancer has been hard.  The good news is that I don’t cry every day anymore.  Up until about six months ago, I cried every day since my diagnosis.  That’s a lot of crying.  A lot of trauma.  I still think about cancer every day, several times a day but the thoughts and emotions are no longer paralyzing.

Cancer has made me feel stuck in life.  Right before I was diagnosed, I was starting to think about the next steps in my career.  I had to put that on hold, of course.  Now, I have no idea what I want.  I’m trying to work through all of this with a therapist but I’m having trouble moving on.  I’m still mourning and I’m trying to understand what this new normal is.

They say that each year, dealing with the aftermath of cancer gets easier and easier.  That one day, I won’t think about it all the time.  It will be a distant memory.  At two years post diagnosis, I don’t find this to be true.  I have my life and I’m so grateful to be able to do many of the things I love but I’m having trouble moving on.  It’s all still so raw.  I’m still so bitter an angry.  It doesn’t feel good.

I’m going to try to keep busy all day tomorrow.  Hopefully I won’t think too much about the significance of tomorrow’s date.  My hope for myself is that I find as much joy as possible.  Maybe I should do something nice for myself.  Get a mani/pedi or take a long walk and window shop.  I don’t know.  But what I do know is that I need to start turning this frown upside down.  I need more joy.  More life.  Or why did I fight so hard?

 

What Defines Me

I was riding in my car this morning, listening to WNYC, and a commercial for Memorial Sloan Kettering Cancer Center came on.  It was talking about survivorship.  I can’t remember the exact words of the commercial suddenly (chemo brain!) but it was something like, “After cancer, people call you a survivor.  But after cancer, at Memorial Sloan Kettering, we want you to do more than survive.  We want you to live.”  On the Staten Island Expressway, 10 minutes from the school I would be teaching in, I started to cry.

Recently, I have been thinking about my life post cancer.  It’s been a year since I’ve finished major treatment and although my trips to the cancer center are less frequent, I still feel like it’s a major part of my life.  I remember after being diagnosed that I was told that I would have “a bad year.”  I don’t know if I was told the next part or if it was something I assumed but, I thought my doctors told me that after the bad year, my life would go back to normal.  My hair would grow back and look super cute with short styles.  My energy would be back.  I’d feel good and I’d be cancer free.

What a load of bullshit!

While the side effects of past and current treatments are awful, it is the emotional toll of the experience that is now hard to live with.  When I started this blog, I wrote in my “About Me” page that I wouldn’t let cancer define me.  I meant it, too.  Just two weeks into my diagnosis, I’d bought into the idea that cancer was not permanent and that while it sucked in the present, it was something to be overcome.  And when I did kick cancer’s ass, I could continue with life as usual.  Cancer was like a “Breaking News” interruption of my favorite program; it was annoying and I wanted to get back to my regularly scheduled programming (my regular life) but I had to get through the necessary detour.  That is what I was promised.  That is what was sold to me.  So when I said that I would not let cancer define me, I meant it.

Oh, naive, Carrie!!!!!  If you only knew then what you know now.  If you only understood the damage cancer treatment can do.  If you only understood what was in store.

Cancer completely defines me.  I think about it all the time; with every hot flash, every time I see my scars, every swollen sensation in my ugly ass lymphedema arm, every time I see the new curly, dry hair (previously wavy and shiny) that I can’t control, every time I put on mascara (I never needed it before), every time I eat (is what I’m eating a good choice?  Will it stop my cancer from coming back?  Is it feeding my cancer?), every time I work out and my body feels like hell, every back pain, every disappointing moment and even in every moment of joy.  Cancer is always there.

Cancer is a part of almost every conversation I have.  No matter the topic, it always comes up.  I think to myself as I talk to people, “Just don’t mention it!!!  No one wants to hear about it!  They’re all sick of it.  Stop talking about it!  Stop! Stop!  Shut the fuck up!!!!!!”  But I can’t help myself.  Everything for me comes back to cancer.

It is who I am.  It is so much of what defines me, I often don’t remember the person I was before.  This leaves me with the particular conundrum of having to redefine my life.  I’m suddenly in the position where what I thought I wanted, I either don’t want anymore, am not sure if I want anymore or if I can make it work in my post cancer life.  The things that brought me joy before cancer don’t bring the same amount of contentment.  I feel like I should now do great things with this second chance I have been given but, what is this new goal that I must surmount?  What must I achieve to make my life meaningful again?

I believe that in our lives, experiences can change us and make us analyze our current lifestyle and goals.  We should redefine ourselves.  We should always be growing.  But when the impetus for change is something so violent, invasive, and permanent…that redefining can be overwhelming.

I’m trying to get to know myself again.  I want to know who I am and what I will become.  But right now, the old me is holding the new me back.  She doesn’t want to let go.  She doesn’t want the cancer, or, more accurately, the experience of cancer, to win.  But it’s who I am now.  It’s everywhere!  Even in my morning commute.

 

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.

Waven Imma Clean Denim Kimono Jacket.  asos.com

Noisy Mae Denim Kimono Jacket. asos.com

North Channel Jacket. anthropologie.com

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

Vegan Suede Kimono. anthropologie.com

Trench Cape. jcrew.com

Deconstructed Trench Coat. cosstores.com

Grosgrain Detailed Parka. cosstores.com

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

Drippy Linen Jacket. freepeople.com

Josie Natori Jacquard Wide-Sleeve Coat. saksoff5th.com

Reversible Dot Inverted Pleat Dot Techno Jacket. saksfifthavenue.com

Taffeta Trenchcoat. saksfifthavenue.com

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

 

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

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

 

Bits Of Happiness #24

I can’t believe the overwhelming response I have gotten to my last two posts about lymphedema.  Last night, I saw my post come up on Facebook as a “related link” and it said that it had been shared 754 times!!!!  And by tonight, close to 1000!!!!!  These posts, by far, have been the most read and commented on my blog.

This makes me thrilled because it helps me feel less alone.  Lymphedema can be so isolating; sometimes I feel like I am the only one to be going through such a horrific disease, even though I know I’m not.  Seeing all of the views, shares, comments and likes have made me feel less alone.  And I’m letting you all know about this because I hope it helps you feel the same way.  We are definitely not alone in this.

I encourage all of you to continue sharing your stories.  The more we share, the more we raise awareness about lymphedema.

Thank you all, a million times over.

My blog post, right over Kathy Bates!!! Hi, Kathy!!!!!

Everything You Wanted To Know About Lymphedema But Were Afraid To Ask: An Interview With Cynthia Shechter, Breast Cancer and Lymphedema Rehabilitation Specialist

Wow!!!!  I am humbled by the overwhelming response I received in response to yesterday’s post, Lymphedema and How It Has Changed My Life.  So many of you have shared your experience with lymphedema, whether you got it as a result of breast cancer treatment, another surgery or trauma or as a hereditary condition.  This has made me believe, even more strongly than before that we need more research, education and awareness for this disease.  What an incredible community we are creating when we share our experience.

Today, March 6, is officially World Lymphedema Day, which makes me even more thrilled to introduce to you, Cynthia Shechter of Schechter Care.  Cynthia is an OT specializing in breast cancer and lymphedema rehabilitation.  She is not only the OT that has helped me manage what I thought was a condition that would only get worse with time and could not be helped, she has become a dear friend.  She is also a fierce advocate for the disease.  

If you have any additional questions for Cynthia, I hope you will leave it in the comments section or feel free to email me (see my contact information above) if you would like your question to remain private.  And continue to share your experiences.  Knowledge is power.  

It is my honor and pleasure to introduce Cynthia to you all.

Photo of Cynthia Shechter, taken from shechtercare.com

 

What is your full name and what do you do? Cynthia J. Shechter and I am an occupational therapist specializing in Breast Cancer and Lymphedema Rehabilitation

What is your training and are you licensed? ? I received my bachelors degree in clinical sociology from Ithaca College, my Masters In Occupational Therapy from NYU and have trained and been certified by The Klose School for lymphatic education. http://klosetraining.com. I also trained with the Academy of Lymphatic Studies and with Linda Miller, a true mentor in the field. I am licensed to practice in New York and New Jersey.

How long have you been practicing? I have been an OT for 14 years and have specialized in this field for over 10.

There are so many specialties of physical therapy. I am an OT, not a PT, although the lines definitely blur, with this particular specialty Why did you choose lymphedema and breast cancer as your area of focus? It was really by chance. I thought that I wanted to be a hand therapist and while working in hands I identified that I could help my patients more effectively if I could better control their swelling. Since lymphatic drainage is only touched on in graduate school, I decided to go get trained so that I could help improve orthopedic surgical outcomes by getting rid of swelling rapidly, increasing range of motion and functional hand use. In my first few training courses I learned a lot about lymphedema, breast cancer, treatment, etc. I extended my clinical focus to include breast cancer and lymphedema, and found my true passion in doing so. I realized that I could do so much more for this underserved population of patients by advocating for them, helping them through the healthcare maze, using my psychosocial training, and by thinking outside the box in terms of treatment. The more I treated breast cancer and lymphedema, the less I wanted to treat hands, and here I am today, evolved into the therapist I always hoped to be.

Is everyone who gets a mastectomy or lumpectomy at risk for getting lymphedema? Unfortunately, yes.

How long does it take to get lymphedema after a mastectomy? Researchers say that lymphedema typically occurs in the first 2 years post op, but the risk is lifelong. I have many patients whose swelling didn’t begin for 20 years post.

When it comes to breast cancer, is lymphedema a woman’s issue or can it happen to men as well? Lymphedema does not sexually discriminate, anyone can get it regardless of gender.

What signs should women who have had a mastectomy look for to detect lymphedema? Lymphedema can be subtle at first, and I believe strongly that EVERYONE who has had surgery for breast cancer should receive rehabilitation, even if only or a short period of time. Here are some what to look for from the ACS:

“Signs and symptoms of lymphedema can include:

Swelling in the breast, chest, shoulder, arm, or hand

Part of your body feeling full or heavy

Skin changing texture, feeling tight or hard, or looking red

New aching, tingling, or other discomfort in the area

Less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist

Trouble fitting your arm into jacket or shirt sleeves

Your bra not fitting as well as it used to

Your ring, watch, and/or bracelet feeling tight, and you haven’t gained weight

Early on, the skin usually stays soft, and raising your affected arm might relieve the swelling. But over time, the swollen area may become hot and red and the skin hard and stiff.

If you’ve had any type of breast surgery, lymph nodes removed, or radiation treatment, look at your upper body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color. Get to know your body and what’s normal for you. This way you can spot changes and get treatment right away.”

How is lymphedema typically treated? Lymphedema is traditionally treated with Complete Decongestive Therapy, CDT.This link from breast anger.org gives a good description of each component of CDT http://www.breastcancer.org/treatment/lymphedema/treatments/cdt

You tend to “bend the rules” when it comes to standard care of lymphedema. Can you speak to your philosophy of lymphedema care? My overall philosophy is to assist patients in living WITH lymphedema, not FOR it. it Is important for a clinician to listen to what each individual says regarding their care and tolerance of bandages, including time spent wrapping and being wrapped. Nothing in this world is black and white, we all exist in the gray areas, lymphedema is no exception. I think that it is important to treat patients as people, not as a condition. Although CDT is a proven treatment, I think it is so important to modify recommendations to work with a patients lifestyle, and, not everyone responds to traditional therapy well. I believe that it is important to use my training as a guide, but not as a definite set of rules. This helps me respond to the progress each patient is making. I modify my manual therapy, by changing the amount of pressure that I use on the tissue, which helps decrease the amount of tissue fibrosis that individuals have. I change whether or not I use a compression pump, foam for bandaging, sleeves are often not tolerated, and bandaging techniques can vary. When treatment is not modified, patients are often nervous, depressed, and angry about their condition. I find that my patients are more in control of their condition, and less afraid to live their lives.

Is lymphedema reversible? Please explain. If swelling is identified early, it can be reversed.

What is your opinion of how doctors are educated about lymphedema? Unfortunately, doctors do not receive much training about the lymphatic system in general and although there is a lot more awareness of the condition, patients are just not educated early.

How can doctors better educate their patients about the risks of lymphedema?  Doctors should refer their patients to a clinical specialist in rehabilitation after breast cancer surgery. I think doctors have to understand that lymphedema – this is an unfortunate side effect that will affect some of their patients. That early intervention is important, that prevention is possible; that it is insane to tell someone that they cannot lift more than five or ten pounds forever, that all patients who undergo total hip replacement or rotator cuff surgery receive rehabilitation therapy without a second thought, and breast cancer surgery should follow the same protocol. That we all deserve a chance to move freely and pain free after mastectomy; that we can work to decrease a patients risk of developing lymphedema; that rehabilitation therapists are an integral part of recovery from breast cancer.

Can lymphedema be dangerous? Yes. The lymphatics are responsible for filtering out impurities in the body. When they are not functioning properly, patients are at risk for developing cellulitis, lymphangitis and other serious systemic infections.

What are the physical and psychological effects of lymphedema? I treat my patients based on their lifestyles, activities, needs, and a realistic plan for them to be able to manage their swelling once discharged from active treatment. When patients come to me, they tend to feel helpless with the condition. Lymphedema can be unpredictable, and can flare up at times you would never expect. Also, especially for those individuals with leg swelling, this condition can and does limit basic things that we all take for granted, like what pants we wear, or what shoes we wear to the office. Depending on the severity of ones swelling, and despite use of compression garments, swelling can worsen simple because an individual is standing or sitting for too long. Patients with lymphedema may experience pain caused by the swelling and pressure on nerves, loss of muscle tone and function, range of motion limitations, and/or scar tissue formation. It is important to note, however, that not all individuals with lymphedema have pain. Each patient is treated like an individual. Once a patient is evaluated, I continue to re-assess visit to visit to ensure that what I am doing is actually helping. There are times where I use a vaso-pneumatic pump, teach self bandaging, compression garment use, self massage, brushing, etc. I think the most important thing for me to do as a clinician is LISTEN to my patients’ feedback and modify what I do so that I can help them more affectively. Effective lymphedema treatment is dependent on the patient/clinician relationship. Here is an article written about the overwhelming affects of lymphedema on psychosocial health and lymphedema.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153404/  I’m not a a mental health practitioner, but often I find that my patients are more distraught about their lymphedema than they are about having had a mastectomy or even breast cancer. I believe that this I correlated to the fact that they are educated about their breast cancer, they were educated about their reconstructive surgery and made an educated decision regarding their treatment and surgical plan. Unfortunately, especially with the finite set of rules and lack of flexibility in the way lymphedema is treated, this is the one area that patients truly have no sense of control. It is overwhelming. What I hope is that in changing the way that lymphedema is treated, I can give people back their sense of control, and help them find options and a management regimen that will work within their lifestyle. Patients with lymphedema tell me that this insidious disease is a constant reminder of their cancer, and affects self esteem in ways that no one could imagine. Lymphedema and the rules associated with the diagnosis of lymphedema can create an incredible fear to go on with life, lift your children, climb a mountain, run a marathon, or simply carry your groceries.

If you could give women one piece of advice about lymphedema, what would it be? Don’t give up on managing your lymphedema. Find a therapist who can listen to you and respond to your individual needs.

If you could give doctors one piece of advice about lymphedema, what would it be? Go for therapy post operatively to help prevent it and if you have swelling already, please don’t be defeated by this insidious condition. It’s a matter of finding the right care for you.

What should a woman/man do if she suspects she might have lymphedema? Find a therapist and begin therapy early.

If a woman does not live in an area where there are many resources for dealing with lymphedema, like here in NYC, what should she do? Go to the national lymphedema network website to find care.

What is the future of lymphedema treatment? I don’t know, but I am excited to find out!

You can contact Shechter Care directly at

shechtercare.com

18 E 48th St. ste. #801

New York, New York 10017

212-421-1969

Lymphedema and How It Has Changed My Life

It’s the side effect that’s barely mentioned.  A whisper in passing by the surgeon and radiation oncologist.  Spoken nonchalantly as if not talking about it means it won’t happen.  But many of us know that this is not the case.

Today it was announced that the U.S. Senate unanimously voted that March 6th will be World Lymphedema Day.  This landmark decision is the first step in bringing awareness to this awful condition.  I wanted to use this opportunity to not only tell you all about lymphedema but how it has impacted my life.

Lymphedema can happen to anyone who has lymph nodes removed during their mastectomy, a sentinel lymph node biopsy or radiation to the area.  I’m not even talking about those who are born with or develop the condition as part of a hereditary trait or those who get it as a result of another bodily trauma.

Lymphedema is the swelling of an extremity that occurs when lymph fluid is trapped and can not flow properly.  I got lymphedema in my right arm and hand about six months after my mastectomy with axillary lymph node dissection.

I asked my surgeon about lymphedema, concerned about the risks.  “Do you see anyone in the waiting room with a sleeve?  It’s extremely uncommon.”  She then handed me a pamphlet about lymphedema prevention and sent me on my merry way.

Let me say, I love my breast surgeon.  What she does, she does brilliantly.  She’s warm and caring and when it came to my cancer and mastectomy, she was knowledgeable and giving.  Her job was to get the cancer out of my body and she did that.  What she had to do to my body is not pretty, but that doesn’t matter.  Her job was to save my life and she did that.  But that’s not where the story ends for many of us, is it?

Getting lymphedema has been traumatizing in many ways, more so than the cancer itself. Cancer was something to be beaten or overcome.  With my cancer I could have a mastectomy, chemotherapy, radiation, herceptin and tamoxifen to help make sure it never comes back again (although even all of this is not a guarantee).  Lymphedema is for life.  It’s something I am going to have to manage.  At this time, there is no cure.

I’ll repeat that in all caps.

THERE IS NO CURE!!!!!!!

Knowing I had done everything I needed to do to save my life and many of these life saving measures have caused me to have a painful condition that I will have to live with for the rest of my life has been unbearable.  When it was first happening, I fell into a depression and cried all the time.

I couldn’t imagine how I was going to live my life with a limb that unpredictably swelled when I lifted my child, ate a salty meal or the weather went above 80 degrees.  I was afraid all of the time; afraid when I tried to imagine what my future might look like.  It was hard to imagine my future at all.

I felt ugly.  Like a teenager who’s uncomfortable in her developing body I began to hide my hand.  I’d fidget with my clothes so that they’d hide my swollen hand or how one sleeve was tighter on my arm than the other.  And feeling even more ugly than I already did after my mastectomy was a major blow to my self worth.  Sometimes, I wondered if life with lymphedema was worth living.  I never contemplated suicide or anything like that and I didn’t want to die.  But I wasn’t sure I wanted to live, either.

I kept a lot of these feelings to myself.  My husband, who knows how hard this has been on me doesn’t even know I was having these thoughts.  He’s going to flip the fuck out when he read this. (Don’t flip out, honey.  I’m ok, I promise.)

But that’s the problem with lymphedema.  Many people don’t know about it, not even doctors.  They don’t know how to talk to us about it and they don’t know how to help us prevent it from happening, although, sometimes it is unpreventable.  They also don’t know how to support us when and if it happens.  Like many medical conditions, we don’t need to simply treat the ailment but all of the mental and emotional baggage that comes with it.

That is where Cynthia Shechter comes in.  Cynthia is an amazing physical therapist who specializes in breast cancer care and lymphedema and she runs and owns Shechter Care here in NYC.  Before I met Cynthia, I was told that I would need to wear a compression sleeve every day for the rest of my life and go to sleep each night with my arm bandaged.  I told my previous PT that I couldn’t live like that.  Cynthia agreed.  Her goal is to find ways to manage my lymphedema and still be able to live my life comfortably.

Since meeting and working with Cynthia and her team, my lymphedema has improved.  Any time there is a flare-up, she doesn’t freak out.  She just says, “Oh, don’t worry about it.  We’ll get it back down.”  She means it and she does.  This has changed my whole perspective and outlook on life.  You see, now I don’t cry myself to sleep every night.  I don’t wonder if life is worth living.  I know it is and I can find a way to live happily with this condition.  Life will be hard and it won’t be perfect but there will be more joy and happiness than I thought I can have.  This is a huge gift.

Coming soon, I will have an interview with the amazing Cynthia Shechter about lymphedema.  I’m hoping that by bringing her expertise to my blog, many of your questions will be answered about lymphedema and care for women who have undergone breast cancer treatment.  With awareness and education, it is my hope that no one will have to feel hopeless like I did and will be able to advocate for their own care.  I can’t wait to introduce her to you all.

Did you develop lymphedema after breast cancer surgery and treatment?

How has your life changed as a result of lymphedema?

What is one thing you would like people to know about your lymphedema experience?