My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


5 Comments

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.


1 Comment

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

coat 1

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

coat 1

Vegan Suede Kimono. anthropologie.com

coat 1

Trench Cape. jcrew.com

coat 1

Deconstructed Trench Coat. cosstores.com

coat 1

Grosgrain Detailed Parka. cosstores.com

coat 1

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

coat 1

Drippy Linen Jacket. freepeople.com

coat 1

Josie Natori Jacquard Wide-Sleeve Coat. saksoff5th.com

coat 1

Reversible Dot Inverted Pleat Dot Techno Jacket. saksfifthavenue.com

coat 1

Taffeta Trenchcoat. saksfifthavenue.com

coat 1

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

coat 1

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