Acquainted With The Night

BY ROBERT FROST

I have been one acquainted with the night.

I have walked out in rain — and back in rain.

I have outwalked the furthest city light.

 

I have looked down the saddest city lane.

I have passed by the watchman on his beat

And dropped my eyes, unwilling to explain.

 

I have stood still and stopped the sound of feet

When far away an interrupted cry

Came over houses from another street,

 

But not to call me back or say good-bye;

And further still at an unearthly height,

A luminary clock against the sky

 

Proclaimed the time was neither wrong nor right.

I have been one acquainted with the night.    

Getting Into The Spring Of Things

There’s nothing like starting to exercise again after a long hiatus to make you feel like a total and utter failure.  In your mind, you can sprint for miles while in reality, your body will only take you to the next tree, or car, or lamppost.  It’s discouraging to say the very least.

I know that I should be forgiving and kind to myself.  Not that long ago I underwent a huge surgery and this is after 6 months of chemo and radiation.  That’s not a small thing.  And the recovery from this particular surgery, the DIEP Flap, was especially rigorous and intense.  I couldn’t move for weeks.  Exercise was out of the question.  I mostly lay on my couch and binge watched Scandal, The Good Wife and How To Get Away With Murder.

I did all of this without caring much for what I was putting into my body.  I didn’t go crazy or anything but I certainly didn’t measure the amount of ice cream that I was ingesting.  Well, I guess I could measure it but in pints rather than small measuring cups.  I did try to eat a balanced diet with lots of veggies, though.  But when you’re not moving it doesn’t matter so much.  Between being a couch potato and the side effects of the tamoxifen, I have gained a little weight and I’m really unhappy about it.

Getting out and exercising is really hard.  For starters, between work and raising my son, I don’t have a lot of time left over to exercise.  I would love to take a class but my husband works long hours so he’s not home in time for me to get to a class.  I also don’t know what kind of exercise I can do without hurting myself.  The last time I tried to exercise in a slightly vigorous way was during chemo.  I put on The 30 Day Shred on my dvd player and somehow, despite low hemoglobin counts, got through the video.  But it wasn’t long after that my cording and lymphedema developed.  I’m positive that this vigorous exercise is what triggered the issues.  I was told by doctors to exercise.  I was told to take it easy.  So I modified the pushups and did some of the exercises with light or no weights.  But that wasn’t careful enough.

I didn’t have any guidance when it came to how I should exercise.  When I am told to take it slow or easy, what does that look like?  When can I get back to the things I love to do, like boxing?  I love the idea of punching something but I can just imagine swinging my right arm out for a hard jab and feeling that awful pull of the cord that begins in my breast and goes all the way down into the pit of my arm and to the webs of my hands.  I don’t need more cords and I don’t need my lymphedema to worsen.

So, that leaves me with running.  I hate running.  No.  You don’t understand me.  I HATE RUNNING!!!!!  But, my husband loves running.  He loves it so much that he runs half and full marathons.  He makes me come out and watch him.  He talks about running constantly.  CONSTANTLY!!!!!  If you know and love a runner, I know you know what I’m talking about. A runner has a myopic view of life…running is great and everybody should love it.  They can not, in their egocentric state, imagine how one can not love running.  They live for the euphoria that comes from pushing through the pain.

Me?  I never hit that euphoria.  My endorphins don’t kick in.  They never have after a run or workout.  In fact, it’s the opposite.  I get pissed of when I run.  Like, really angry!  I curse, I cry, I hate it.  Does this happen to anyone else?

But here’s what I do love.  I love being outside.  I love watching all of the people in the park with their babies, children, friends….I love seeing the trees bloom in the spring and the leaves turn bright oranges and yellows in the fall.  I love it more than I can express.

Today, I went out and ran for the second time since my surgery.  It was awful.  I barely made it through.  But as I huffed and puffed through Prospect Park, I noticed some of the trees were pink with flowers that must have just bloomed.

It’s spring.  It’s time for a fresh start.  It’s time for things to begin their cycle toward life and beauty again.  Some of the trees are still bare, with not a bud in sight.  They are lagging behind.  I know how they feel.  But inevitably, in their own time, they too will bud and grow leaves.  If all of these things in nature can grow and have their fresh start, why can’t I?  So I will go out again soon.  I will do my best.  I will try to be kind and loving to myself.  Even when I’m running.

Bits Of Happiness #26

I have a love/hate relationship with NYC these days.  I love it because there’s always something to do, somewhere to go.  It’s hard to get bored here.  I love the arts, the culture, the food and the people.  I hate it because it has become so overcrowded, unaffordable and a series of chain stores where small, gritty, independent shops used to exist.  It’s hard to live in the place where I was born and know that, in many ways, it’s no longer for me.  It’s pushing me away.

But not this weekend.  This weekend was filled with arts and culture for me and my family.  On Saturday, we celebrated my mother’s birthday by taking Oliver to see a wonderful production of Eric Carle’s The Very Hungry Caterpillar.  I became so emotional as he watched in awe as the actors manipulated the colorful puppets.  I felt so lucky that I am able to expose him  to theatre at such a young age.  Then today, we went to The New York Historical Society’s opening weekend of the Mo Willems exhibit.  If you don’t know Mo Willems, he is a children’s author and illustrator.  He is best known for his books, Don’t Let the Pigeon Drive the Bus, Knuffle Bunny, and the Elephant and Piggie series.  They now have an exhibition that features his artwork and has a replica of the bus that appears in his book which is FILLED with his books for children to read.  And this weekend, they had art projects out for the children to participate in and they got to meet Elephant and Piggie.

I wasn’t sure if Oliver would like meeting the life size characters but he was so excited to see them!  He went right up to them and showed them the wire sculpture of the letter F he made (his favorite letter).  He couldn’t believe it was really them.

Then, later, as I was perusing the artwork, I recognized a voice and realized I was standing next to Cynthia Nixon (of Sex and the City fame) and her wife as we looked at the same picture.  How cool is that?

It’s days like these that make it impossible to leave NY.

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My Life In Two Parts

When I go on vacation, I take thousands of pictures.  I can’t help it.  I love looking at the world through the camera and I’m afraid that if I don’t document every moment, I will forget it.  This drives my husband crazy.  He just wants to keep moving and exploring.  I want to take a picture of that beautiful flower bud with the river in the distance.  We differ in that way.  But always…always…when push comes to shove, we have amazing memories to look back on.  Inevitably, when we look back, we come across a picture and we realize that it shows a moment that we had forgotten.  A moment that, without that picture, might be lost forever.

The other night I was looking at our first and last vacation as a family, just Ken, Oliver and I.  We went to Oregon.  I had always wanted to visit the Pacific Northwest and we decided that this would be the perfect first trip to take with a toddler.  There’d be lots to see and do, great food to eat, wine tasting, hiking, culture, ocean…everything.  And this vacation delivered.  It was June of 2014.  Oliver was 18 months old.  It fell on our 6th anniversary.  But after it ended, one week later is when I found my lump and our lives changed forever.

I haven’t looked at these pictures in a very long time.  It feels like a lie.  A fraud.  Looking at our smiling faces…we were ignorant of what was coming.  Of what was already growing inside of me.  I look at those pictures and I know what in the next chapter.

I see those pictures and I’m scared for the people in them, as if it wasn’t me or my family.  They are another family.  It’s going to happen to someone else.  I cry for them because they don’t know what’s about to hit them.

I think about my cancer then…laughing…mocking me…like a thief hiding in your closet only to come out when you’re not looking to take everything that’s precious to you and turn your home upside down.  Cancer stole so much from us.  It turned our lives upside down.  But when I look at those pictures, all I see are those unknowing, unsuspecting people.  And I just want to scream at them to beware of what’s lurking.

I now think about my life consisting of two parts; before breast cancer (BBC) and after breast cancer (ABC).  I often look back to the time before breast cancer and long for what I had.  It wasn’t perfect. Is anything ever perfect?  But we were happy.  We were traveling, which was a goal of mine for Oliver.  I was satisfied with my career and beginning to think of the next steps.  I started thinking about the possibility of having another child even though I had said, “one and done.”  My life was developing and moving forward.  These pictures remind me of that.  It breaks my heart.

After breast cancer is much different.  I have trouble seeing the future in the way I used to. I don’t know what my life is supposed to look like now.  I don’t know what I want to do or where I want to go.  What are my goals?  What are the next steps in my life?  It’s like cancer is the glue that sticks me to this past year and half and won’t let me move forward. And these photos, however beautiful, however memorable, remind me of that.

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Do you view your life in two parts; before breast cancer and after breast cancer?

Bits of Happiness #25

I don’t think I’ve told anyone, but I’m going to be a warrior!!!!!!  I am teaming up with an amazing organization, Hidden Warriors, to tap into my inner goddess and become a warrior for a day.

Hidden Warriors mission is, “We are committed to increasing self-esteem in and empowering women who have been affected by cancer. Together, we create an experiential and transformative adventure which tap into the Hidden Warriors they already are. The Warrior Makeover Workshop model is achieving this goal!”

I will be spending the day with volunteer makeup artists, costume designers, occupational therapists, yoga instructors, photographers and other amazing cancer survivors.  I absolutely can’t wait.

Yesterday, I stopped by the studio of the mad who makes the head gear.  Darrell is a seriously talented artist and it was so hard to choose which head piece I was going to wear but after trying on a bunch, this one is the one that felt right to me.  What do you think?  Isn’t it amazing?

I’ll be transforming on April 3rd.  I’m not sure when I’ll get the photos but I can’t wait to show them to you.  In the meantime, here are some past photos they have done.  What do you think?

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Zoladex Was Supposed To Be A Pain In The Ass (Plus Another Anniversary)

I have to admit, I’ve been planning the title of this post for several weeks, ever since I last saw my oncologist we decided to get me started on Zoladex.  The title was supposed to be, Zoladex Is A Pain In The Ass, but it can’t be anymore.  I’ll explain why.

Zoladex is a drug administered by monthly injection and in combination with Tamoxifen in premenopausal women, lowers the risk of recurrence when diagnosed with early stage, hormone positive breast cancer.  It is an ovarian suppressor so it stop the ovaries (or lowers) production of estrogen.  This will put me in complete menopause.

My oncologist has been bringing up this drug to me for over six months now and I have been very resistant.  “Why,” I asked on many occasions,”do I need to do something else?  Why do I need to put another drug in my body?  Haven’t I done enough?”  It was really that last question I was asking.  “Haven’t I done enough?”  Why isn’t a mastectomy, chemotherapy, herceptin, radiation and tamoxifen enough to keep my cancer at bay?

The answer she gave me is that Zoladex is one more thing that can help prevent recurrence.  While it doesn’t improve my chances a huge amount, my oncologist feels that the benefit it is statistically significant in women who were diagnosed under the age of 35 (I was 37 so, close enough) when in combination with all of the treatment I have had.  It took a long time for me to come to the conclusion to try it but I promised my son that I would do everything…EVERYTHING…to make sure this cancer never happens again.  So, I need to at least try it.

I had heard that there is a “technique” for administering the injection so I was very curious about that, so I asked my oncologist.  Her reply was, “How graphic do you want me to get?  Are you sure you want to know?”  I felt the blood leave my head but I said that I’m not good with surprises and that I’d rather know than be caught off guard.  So she informed me.

WARNING:  If you do not want to know how this is done, stop reading now.  I acknowledge that this information is not helpful for all.

“Well, it’s a big needle.  A really big needle.  Whatever you do, don’t look at it.  Because it’s a big needle, after sticking it in the skin it needs to be twisted.  Then we inject the liquid which is more vicious that others.  It is going to hurt but only going in.  And when it’s done, it’s done.  That’s it.  And we inject it into your backside.”

My ass!!!!  MY ASS!!!!  They wanted to stick a huge needle into my ass?

Hence, the title I’ve been planning for weeks.  Zoladex Is A Pain In The Ass.

But, yesterday, when I got the injection, I was informed I was going to get it in my belly and not my bum.  “Are you sure,” I asked my nurse?  She was positive.  I was simultaneously elated and disappointed; elated because I got to keep my pants up and avoid the humiliation of getting a shot in the ass but, disappointed because what was the title of this post going to be?

I informed my nurse, Nina my chemo nurse, of course, that I didn’t want to see the needle.  She agreed it was not a good idea.  But let me tell you what I did see.  The box!!!!  I saw the box the needle came in.

I am of the belief that anything that is going to enter your body in any way while you are still conscious should not come in a box that size.  I started to sweat.  I wasn’t sure I could do it.  But amazing Nina kept me talking (probably so I wouldn’t faint), sprayed some numbing solution on my skin and did it.

It didn’t hurt.  Maybe a slight pinch but that’s nothing.  And it was done in seconds.  In fact, it hurt more after (a little soreness) than actually getting the injection.  It was done.  Now I just have to see if I get any side effects…more hot flashes, night sweats, that sort of thing.

I had been psyching myself out for weeks over this injection.  In my mind, the needle looked something like this.

Or worse, this one.

My imagination really got the best of me.  I’m still happy that I was prepared for what was coming.  If I had seen that box and didn’t know what was in store, I think I would have flipped out.

It’s also ironic that I started this new treatment on the anniversary of my last chemo treatment.  I can’t believe that one year ago, I said goodbye to chemotherapy (hopefully) forever!  What’s amazing to me is how quickly this year has gone by.  From the time I was diagnosed and throughout treatment, it felt like the world stopped turning and I was stuck in time.  And since then the world has been spinning uncontrollably forward.  This is good in the sense that I have been getting back to normal life, to the best of my ability.  But it’s also had me scrambling to catch up.  More on that in another post.

But today, I want to celebrate how far I’ve come.  Even though I’m starting a new treatment and I don’t know what the side effects will be like, I have to remain hopeful.  I have to trust that it’s one more thing keeping me safe.  It’s one more thing ensuring that I see my son graduate college, get married and have his own children.  And for that, you can stick any size needle into me whenever you want (not really but yes really).

Enjoy some images taken one year ago.  And you can read about my last chemo day and how I celebrated here and here.

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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.

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?