My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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?

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

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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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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.

 


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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?

collage

 


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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.

 


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Spring Coats For Women With Breast Caner Related Lymphedema

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

Fan-fucking-tastic!

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

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

coat 1

Waven Imma Clean Denim Kimono Jacket.  asos.com

coat 2

Noisy Mae Denim Kimono Jacket. asos.com

coat 3

North Channel Jacket. anthropologie.com

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

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Vegan Suede Kimono. anthropologie.com

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Trench Cape. jcrew.com

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Deconstructed Trench Coat. cosstores.com

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Grosgrain Detailed Parka. cosstores.com

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

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Drippy Linen Jacket. freepeople.com

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Josie Natori Jacquard Wide-Sleeve Coat. saksoff5th.com

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Reversible Dot Inverted Pleat Dot Techno Jacket. saksfifthavenue.com

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Taffeta Trenchcoat. saksfifthavenue.com

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

 

coat 1

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

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

 


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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.

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