My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Over The Hill and Through The Year

happy new year

Dear 2015,

What a year it has been.  I knew it was going to be hard.  I knew I was going to have some challenges.  I also knew you were going to be filled with beauty and joy.  You were all of these things and more.

In 2015, I was still undergoing chemotherapy.  It knocked me out pretty hard and even gave me some severe anemia.  I managed to avoid more blood transfusions, like the one I got in 2014 by eating a lot of kale and liver (which does not taste great when on chemo, by the way).  But I kicked cancer’s ass and finished chemotherapy only 2 weeks behind schedule.  I celebrated by taking to the streets of NYC with a sign that said, “My Last Chemo!  Take A Picture With Me!”  And people did and shared their own stories about dealing with, caring for someone or losing someone to cancer.  It was a powerful moment for me.

Then I started radiation.  I had heard from many people that radiation was a piece of cake compared to chemotherapy.  In many ways, it was but it also kicked my ass.  The position I had to be in for the treatments were extremely painful.  And having to go five days a week nearly killed me.  I had my first official freak out at the cancer center before a radiation session because they never told me how late they were running and I needed to get home to Oliver. It was not my best moment but hey, sometimes you need to scream and cry to get things done (just not too often).

The hardest physical part of 2015 was developing lymphedema and cording (axillary web syndrome) in my right arm.  I had heard about it.  I asked every doctor and nurse about it but was told not to worry about it.  But I got it.  I started physical therapy and it only got worse.  This lead to some major anxiety and depression.

I learned that survivorship is hard and in many ways more difficult than having cancer.  Once I was done with treatment, I was left to deal with the trauma and aftermath of what had happened to me.  I felt like I was expected to move on and get on with life.  But cancer still had a tight grip on me.  I could still feel the side effects of treatment and this was not letting me move on.  I’m still working on this and imagine I will be for a quite a while longer.

The hardest emotional part of 2015 was losing friends to cancer.  I only met Christine once at a party but her spirit and love for her son made a huge impact on me.  She had gastric cancer and diagnosed terminal immediately.  I think about her often and give Oliver an extra squeeze when I do.  I also lost my good friend, Jessica.  Jessica had Ewings Sarcoma and while her life with cancer was difficult, she fought all the way with a thumbs up and a smile on her face.  Her positivity through cancer’s rough times was a model for me on how to “do cancer.”  I don’t think I could have gotten through my own experience with as much humor and grace if was not for her guidance.  I miss Jessica terribly.  Sometimes, when I can’t sleep at night, I still check to see if she’s on Facebook for a chat.  Then I remember.

Amidst all of the pain, fatigue, and desperation that cancer can bring, there was also so much joy.  In the spring, my hair started to grow back.  And even though it came back white, I was just happy to have hair on my head so that I wouldn’t need to wear a scarf in the warm weather.  I took a much needed family vacation to Martha’s Vineyard.  I needed that time away from cancer to relax, lay on a beach, eat lobster and snuggle with my family.  It was an incredible trip.  I celebrated my one year cancerversary on August 1.  I remember thinking that making it to the year mark would be an impossible task and I wasn’t sure how it would happen.  Somehow it did though.  The year had gone slowly but I was able to reflect on how strong I had become and how powerful.  I also celebrated my one year mastectaversary on September 5.

Of course, the best part of 2015 was my son, Oliver.  I’ve said it before and I’ll say it again, he is my everything and I am so proud to be his mommy.  This year, he started preschool for the first time and he loves it!  We took Oliver to see his first movie, The Good Dinosaur.  We filled our days with trains and train rides, even going as far as Peekskill to see Amtrak and a railroad crossing!  But, most importantly, I have been healed by his daily hugs.  

2016 will be here in a few short hours and with it will be coming new challenges and new joys.  I will be having my long awaited breast reconstruction, the DIEP Flap surgery.  I will be starting Zoladex, an ovarian suppressor, once I am healed from surgery.  I don’t know what side effects these will bring but I’m hoping for quick healing and no side effects.  I deserve a break.

This year, I’m hoping to partner with my amazing new physical therapist, Cynthia Shechter of Shechter Care (I’ll be introducing her to you on this blog soon) to change the ways doctors prevent and treat lymphedema pre and post mastectomy.  Cynthia has changed my life in so many ways and she fights for women with lymphedema every day.   I can’t wait for you all to meet her.  Hopefully, we can get things changed in this country around lymphedema and lymphedema education.

I don’t know what else I am hoping for in 2016.  I used to plan so much ahead but it’s hard to do when you are still dealing with cancer’s leftovers.  I hope to keep on living life joyfully and to gain new experiences.

Finally, I want to thank all of you who have been reading and supporting me and my blog.  I have so much respect for those of you who have been blogging long before me and who have paved the way for breast cancer advocacy and education.  For those who have just been diagnosed and have found my blog, I wish you a year of strength and healing.

Happy New Year to all of you!

Welcome, 2016!  Let’s kick some ass!!!

 

Love,

Carrie


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Bits Of Happiness #15: Happy Holidays!

It’s a balmy 70+ degrees here in rainy NYC but it’s still Christmas time.  We haven’t let the weather dampen (no pun intended) our holiday spirit.  Here are some pictures from our holiday frolics including the Rockefeller Center Christmas Tree, St. Patrick’s Cathedral, The Saks Fifth Avenue Windows and an amazing art installment, Luminaries.

Happy Holidays, everyone!


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Feeling Guilty About Feeling Happy: A Holiday Tale About Survivor’s Guilt

As we get to the highlights of the holiday season, I often reflect on how far I’ve come.  At this time last year, chemotherapy was kicking my ass.  I had just gotten out of the hospital for some unknown virus, my white blood cell count had dropped to almost non-existent and I could barely move.  Parties were continuing without me.  The holiday lights were shining, even though I couldn’t enjoy them.  Dinners were being eaten and wine was being poured, but not into my glass.  When you are going through cancer, sometimes you get a glimpse of how life will go on without you.  It’s unsettling.  Disturbing.  Macabre.  But that was my holiday season in 2014.

This year is so much different.  Treatment is done and while I can still feel it’s effects, it doesn’t change my day to day activities.  I can pretty much go about life normally (pretty much).  I’ll be going to friend’s houses for Christmas Eve for feast of the 7 fishes and then to my oldest friend’s mother’s house for Christmas Day.  Ken will be working so it will be me and Oliver but I will be surrounded by friends and fabulous food.  I will be celebrating rather than writhing in indescribable fatigue.  I will be laughing rather than begging for the pain to end.  I will get to go out with my son and see the Christmas lights, the Rockefeller Center christmas tree, the famously glamorous windows at Saks 5th Avenue and the festively unique and quirky stalls at the Union Square holiday market, my favorite Christmas activity.  There is so much joy in my life right now and that is not fair.

This month seems to be plagued with bad news from those who are enduring metastatic breast cancer.  Several women have died recently and even though I didn’t know them, it is a constant reminder that things can change at any time, without warning or reason.  It is a neon sign that flashes in my face, telling me that nothing is permanent and no one is safe, especially me.  Young women have been forced by cancer to leave their small children.  This is my biggest fear and it’s happening all the time.

But I’m here celebrating.  It’s not fair.

Other’s are receiving bad news.  The cancer is back.  The chemo isn’t working.  The cancer has spread.  More treatment is needed.  And on and on.

I am going to parties while others spend their days on the infusion floor.  It is not fair.

And then there are those who I loved who have recently left us.  My friend and partner in cancer crime, Jessica, left us less than two months ago.  I think about her every day and although I never met her family, I keep them in my heart.  I can’t imagine what this holiday season must be like for them.  I don’t want to imagine.

I am here, enjoying the city that Jessica loved.  I am seeing Broadway shows, eating the food, taking in the spectacular views…all of the things she would want to do.  All of the things she was hoping to do again.  But she is not here.  All I can do is try to enjoy this city in her honor.  But that is not enough.  She should be here with me.  It’s not fair that I get to go on and she doesn’t.  What makes me so special?

What makes me worthy enough to have this time when so many others do not?

I do not have the answers to these questions.  All I know is that I’ve been loving life and loving my city, my family and my friends this holiday season.  And while I wouldn’t want to change a thing about it, I want to change everything.  I want to change everything.

 

 


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Bits of Happiness #14: Birthday Parties and Birthday Traditions

Each year for Oliver’s birthday, since he was a year old, we take a trip to Dyker Heights, Brooklyn to see the amazing Christmas lights that the rich people put up on their homes.  It’s truly a sight to see.  This is the first year that we brought Oliver to see them that he really appreciated them.  He loved seeing all the Santas!

This year was his first school birthday party and it was a blast.  I came with him in the morning and read one of his favorite books, Popcorn by Frank Ash.  Then we used our bodies to act out how a corn kernel becomes popcorn.  It was super cute to work with three year olds and pop up all over the place.  Then I brought in my popcorn maker and we watched popcorn pop!!!  They had a blast.  Then we sang Happy Birthday to Oliver with daddy’s famous brownies and the popcorn we made.  How cute is he in his birthday crown?

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Oliver’s first school birthday party. He loved being at the center of attention!

Then, on Sunday, we hosted a birthday party.  We had to cancel last year’s party because I was in the hospital and sick because I had no white blood cells left.  So we really did it up this year.  We had a train themed party.  I didn’t take a ton of pictures.  We had close to 40 people over so I mostly socialized but Oliver loved having all of his friends over to play.  He was such a little social butterfly!!!  It was a really happy birthday!

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We had about 35 people at our home. It ended up being fantastic and he loved his birthday cupcakes.

Cute quotes from the day:

This we heard from our beds at 7am: “Mommy!  Daddy!  Wake up!  I’m 3 years old!”

“Mommy, I’m three years old.  Can I drink coffee now?”

To his friends that walked in: “Did you bring me a present, please?  Thank you!”

 


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A Letter To Oliver On His Third Birthday

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Dear Oliver,

This year has been a whirlwind of growth and development.  You wake up from a nap and you are taller than when you went to sleep just a few short hours before.  You learn new words and phrases every day.  For the first time, we can have conversations about things that interest you.

You ask so many questions.  You are passionately curious about your world.  You are especially interested in the moon and it’s phases.  You know when it is a crescent, half moon, 3/4 moon and full moon.  You love to go out at night to chase the moon, to see if it’s out or being hidden by the clouds.  You love geography and always want to know what street or highway we are on.  Your favorite bridge is the Brooklyn Bridge and you love it so much, you said that when you grow up, you want to build bridges just like the Verrazano Bridge (just like your great-grandfather did).IMG_0912

You are obsessed with trains.  You can turn anything into a train; chopsticks, a roll of wrapping paper, string beans….  Your world is one big subway station.  You especially love the F train, Amtrak, Metro North and railroad crossings.  You can watch a railroad crossing all day, every day, if we gave you the opportunity.  DSCN2610

You love to make people laugh.  You make up words, sounds and dances because making people smile is your mission.  You love to give everyone hugs, it doesn’t matter if you know them or not.  This is because you have a pure soul.  One time, there was a man standing on the street with a serious look on his face.  “He is not happy,” you asked?  I didn’t know but thought that he might just be thinking.  You ran up to him and gave him a huge hug.  “You are happy now,” you asked him?  And he was.  That is your magic. IMG_3133

You favorite foods are cereal, cookies, ice cream, cake, apples, bananas, blueberries, turkey burger, peas and corn.  Your favorite books are Dr. Seuss’s ABC, Subway, Ten Little Dinosaurs, Foodie Babies Wear Bibs, There is a Bird On Your Head and Stop, Train, Stop.  You favorite things to watch are Super Why, Curious George and Dinosaur Train.  Your favorite songs are Shake It Off by Taylor Swift and Uptown Funk by Bruno Mars.  When you dance to them, it looks like you’re doing “the maniac” from Flashdance.

 

Everyone who meets you tells me that you have the kindest heart and the most beautiful smile.  People are always impressed by how caring you are for others.  You are always concerned about other people’s feelings and making other people happy.  You share your toys and snacks.  If another baby is crying, you try to make them feel better.  IMG_2862

I am so lucky to have such a loving, gentle and caring boy as my son.  You have been so patient with me this year as I learned to heal physically and emotionally from the scars of cancer.  You still kiss my boo-boos and ask if I am feeling well.  IMG_1202

If I get up in the morning, it is because of you.  It is because of you that there is always joy in my life, even when there is so much pain.  You continue to light up my life with your looks of wonder and amazement at the world.  JEF_6612JEF_6429JEF_6618

I love you to the moon and back.  I love you more than cake.

Happy Birthday, my darling 3 year old!

Love,

Mommy

 

 


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Run Away

I’m the type of person that likes to face a problem head on.  The best example I have of this is (and my husband LOVES this story) when I was in my early 20s and some man (boy?) delivering flowers whispered something inappropriate to me as he passed.  I don’t remember what this man said to me but it set me off.  I remember that I had received several catcalls that day, something that angered me beyond words so I just wasn’t in the mood for it.

“What did you say to me,” I hissed!!!!

He just stared at me.

“No, say it again!  Repeat what you just said to me.  Out loud so other people can hear.”

He stared at me for a moment, smirked and began to walk away.

“No, say it again!  Say what you said to me!!!”  I might have added a few curse words in there.

I began to follow him.  He walked faster.  So did I.  He began to run and I followed.  I followed him until I got an apology.  I think it was two city blocks.

I think about this now and how crazy (and stupid) it was for me to do this.  This is NYC!  I could have gotten shot or, at the very least, slapped across the face.  But I hate injustice and when people are treated poorly or unfairly.  That day, I felt like I was being objectified and that felt unjust to me.

Even though I’m a little less intense now that I’m in my 30s than I was back then, I still get a fire in my belly when things piss me off or I have been treated unfairly.  It’s how I get things done.  In many ways, when it has come to treating my cancer, I have been much the same.  My anger at this crappy situation has fueled my drive to advocate for the best doctors and treatment.  I never take anything at face value.  I push to know more about everything they suggest for me and the things that I suggest to them.  I have stared cancer in the face and said, “What did you say to me?  That you want to kill me? ” and chased it out as far away as I could.

I have fought and continue to fight against this disease but have oftentimes wondered, what would happen if I just…ran away.  If I just ran away from it all.

I know that running away from your problems doesn’t solve anything.  The rational part of my brain knows that you never leave your problems behind, especially when those problems are rogue cells rapidly growing in your breast with the goal of whole body domination.  But that other part of my brain, the one that prevents the panic attacks and the depression that holds you in you bed all day against your will, believes that running away is just what the doctor ordered.

Sometimes I dream of going to a secluded island.  And island where the only sounds I hear are the crashing waves, the sound of a bird in the palm trees and my own breath.  I can be alone and quiet without people constantly asking questions about my health or bowel movements.

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Photo from willtogo.com

Other times I dream of escaping to Bangkok, being one among millions of people.  I see myself wandering the streets, passing golden temples, taking in the smells of food carts on the streets serving rich broths and roasted meats.  No one would find me there.

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Photo Courtesy of jackandjilltravel.com

Then I dream of India, being embraced by a sea of colored saris and pungent spices. I can taste new foods, see art, go to a yoga retreat (I don’t even like yoga that much).  So many others do it and no one asks why.  I’d be hidden in plain sight.  It would be perfect for me.

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photo from nbcnews.com

But I am a rational person.  I’ve never ran away from a problem and never would.  I know the fantasy of leaving everything behind does not reflect the reality.  My fantasies are often short-lived and I snap to the realization that running away from my problem, from my cancer, from my treatment, would end up making my problems worse.

As I prepare for the next few weeks of my life, I have to go against my instincts to run in the other direction and get as far away from my problems as possible.  Although doing so would feel so good.  I need to get angry again.  Angry that this should never have happened to me, that I’m in daily pain, that I can’t look at myself in the mirror, that my self worth has diminished.  This should piss me off.  It does.  But I need to get more angry so I can face things head on. So I can grab my problems by the balls and say, “What did you say to me!  Tell me again,” and chase them out of my life.

Paris sounds better, though.

 


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Side Effects From Chemo

This was shared with me by the good people at Healthline and I agreed to post it to my site.  I remember looking at this when I was going through chemo.  It helped me think of questions to ask my oncologist about treatment.  Thank you, Healthline, for reminding me of this.  I hope it helps other.

Effects of chemotherapy


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Asking a Favor From The Blogging Community

facebook-censorship

I have a favor to ask all of you. As you may have read this morning, Facebook removed my posts that linked to my latest blog post. My guess is because it contained pictures of breasts. The pictures were not in bad taste and were meant to educate. I feel that by removing and blocking my post, they are censoring me. There are many posts out there of practically naked men and that’s allowed. There are photos of scantily clad women laying suggestively on sports cars. That’s allowed. I think my post about something thousands of American women and probably millions of women worldwide go through should be shared. If you agree with me that I have been wrongly censored, I ask that you go to my blog, www.littlebsbigc.wordpress.org, link to my post, “Decisions, Decisions,” then copy the link and post it to your page with the message I will provide below (or you can write something original if you want). Please add the hashtag, ‪#‎facebookcensorship‬. Thank you!!!

Dear Facebook,

On 12/11/15, Carrie Ellman-Larsen, posted a link from her blog, My Little Bs Have the Big C on her personal page and breast cancer page. The post was about her upcoming reconstruction surgery following her mastectomy. The post was removed and blocked by Facebook, likely due to the fact that the blog post contained pictures of breasts.

Carrie’s blog is used to educate, share stories and build community. This post was indicative of her mission to share and educate others through her personal experience. As such, all of her photos were from medical sites with links and photo credits. None of the pictures were offensive or in bad taste.

By removing and blocking her post, not only are you censoring, you are sending a message that breasts are something to be ashamed of and hidden. You are saying that they are symbols of sex and sexual desires and nothing more.

A mastectomy is an amputation of an important and necessary part of the body. If someone had an extremity amputated and shared photos of prosthetics, that would be allowed. That was what was done here, but with breasts.

I ask that you unblock the link to the post and reshare them on Carrie’s personal and blog page. #facebookcensorship

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My Last Post Removed From Facebook

Hello friends,

My post below about the decisions I’ve had to make recently about my breast reconstruction and further treatment have been removed from Facebook.  I suspect because it contained pictures of breasts.  I’m shocked and appalled that they would remove such photos since the content was not pornographic in nature and, in fact, was taken from a medical site.  Shame on Facebook for this but allowing Donald Trump to spew words of hate and racism.  That’s messed up.  If you know how I can pursue this matter, please let me know.  Below is the message I wrote to Facebook and the link to my blog post.

Hi,
Earlier this evening, I posted a link from my blog about my upcoming breast cancer reconstruction. My posts have been removed and blocked. In my blog, there were pictures of breasts. They were posted from an accredited medical site, breastcancer.org and were credited with the photo. These were not pornographic in nature whatsoever. They represented what happens to breasts after a medical procedure. My blog post linked to medical sites for medical information about the procedures as they were described to me. I know that Facebook is very careful about what content it allows. I’m shocked that it has removed and blocked a post that is about breast cancer and a traumatic breast cancer experience. I ask that you unblock my link and post them again.
Thank you

https://littlebsbigc.wordpress.com/2015/12/12/decisions-decisions/


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Decisions, Decisions

Oftentimes, when facing cancer treatment, you do not have too many choices.  You can choose to have a mastectomy or not.  Go through chemotherapy or not.  Get radiation or not.  These don’t really seem like choices.  At least, for me, they were not presented as such.  When speaking to a nurse about whether or not I would need radiation, he said, “Oh yeah, you’re getting radiation.”  And it was decided.  But recently, as I move into the final phase of my treatment, it seems like I have had to make a lot of decisions that can affect the rest of my life.

When I met with my plastic surgeon, Dr. Saadeh, after being diagnosed in August of 2014, he presented me with all of my reconstruction options.  When I say “all,” I mean two.  1) I could get an implant.  The pro of getting implants is that it is a simple, outpatient surgery with a short recovery time.  I’d be able to get back to normal life, including raising Oliver, in a few short weeks.  The cons of implants are that they need to be replaced about every 10 years or so, assuming that they don’t burst or deflate (REALLY?) before that.  That means several surgeries over my lifetime.  I could develop scar tissue around the implant which would make the breast hard.  Also, if I were to gain or lose weight, only one breast would show change while my reconstructed breast would remain the same.  2) Either DIEP or TRAM Flap surgery (I write both because I honestly can’t remember which one has been offered to me although I’m pretty sure it is the DIEP Flap).  A TRAM Flap reconstruction involves removing fat, tissue, vessels and muscle  from the lower belly area and moving it up to reconstruct the breast.  The DIEP Flap surgery is similar to the TRAM Flap except it is muscle sparing, meaning they take the tissue, fat and vessels but don’t use any muscle.  This can be done by a surgeon who specializes in micro-surgery.  The pros of this surgery is that the reconstructed breast is very similar in feel and look to the remaining breast.  If I gain or lose weight, it will show in both breasts since it is my own tissue.  While this is a more invasive surgery initially, I will have less surgeries for maintenance over time.  The cons of this surgery is that recovery is significantly longer than with getting implants (about 6 weeks total with 3-5 days in the hospital).  I will lose core strength.  I will not be able to lift Oliver for several months.  3) No reconstruction at all.  This was not an option given to me but it is an option and one I have strongly considered.

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Reconstructed breast after DIEP Tram reconstruction. Photo from breastcancer.org

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Reconstructed breasts with implants. Photo from breastcancer.org

My plastic surgeon suggested that, given my lifestyle and the fact that I have a young child, the best option for me would be to get implants.  This was a strong recommendation.  He said he would do a Tram surgery for me but he didn’t think it was the right time in my life to have that kind of invasive procedure.  At the time, I didn’t care.  I just wanted the cancer out of my body.  I didn’t care if I had a breast anymore.  I didn’t care if they took them both.  I just wanted to live.  I wanted to escape my life.

I remember being disappointed with both of my reconstruction options.  I thought I’d look through a book of celebrity breasts and, literally, choose the ones I liked.  “I’ll have one Salma Hayek, please!!!”  But that’s not how this works.  I could change my breast size (I don’t want to, mine are just fine, thanks!) but my breasts will never look “normal” again.  Surgery will not be a positive thing.  It’s like choosing a Congressman; you choose the lesser of  two evils and hope for the best.

Fast forward a year later.  I have had my mastectomy, six months of chemotherapy, a year of Herceptin, and 15 sessions of radiation.  My breast is rock solid hard due to scar tissue and damage from the radiation. I’m in constant discomfort.  I have also developed Axillary Web Syndrome in my arm down to my fingers and lymphedema.  I went to my appointment with Dr. Saadeh, convinced that I was going to get an implant.  All we had to do was iron out the details.  When and where.  But that is not what happened.

“So, what’s going on with that arm,” he asked?

“Ummm…I thought I was here to talk about my boobs,” I replied.

But that’s not what he was interested in.  It turns out, NYU is now starting to do lymph node transplants and he seemed very interested in steering me in that direction.  I had heard about lymph node transplants but was under the assumption that they were still in trials.  They are not in trials but the science is very new and doctors are just starting to do the surgery.  He was also now strongly suggesting that I do the DIEP Flap surgery over getting an implant.

“Why would I want to do that,” I asked?  “I have an abnormally huge child who likes to be picked up all the time.  Wouldn’t that be a problem?”

“Well,” he said, as he checked himself out in the mirror (something he did several times during our appointment), “it’s true that there would be a longer recovery and you could not lift your son for several weeks but I think this would be a good solution for you.  Studies are showing that when you reconstruct with your own tissue, it can increase blood flow to the affected arm, improving circulation and helping to improve symptom of lymphedema.  And I really think you should consider the lymph node transfer surgery.  I think you would be a good candidate.”

So now, in a matter of minutes, the surgery I thought I was going to get, the implant, is no longer being recommended for me.  I could do it but my surgeon thinks I will still be extremely uncomfortable physically.  I now have to wrap my head around the possibility of a completely different surgery; one that will be more violent, more invasive and take up more of my life.  And not only that, I was being presented with a whole other surgery that could help with my lymphedema but, it is completely new and just starting to be done at NYU for the first time.  I would be one of the first ones at NYU to get the surgery!

“I need to read articles.  What articles can I read about this?  And I need to get second or third opinions.  What doctors can I see?”

I think this shocked him a little bit but he answered my questions.  He told me about Dr. Babak Mehrara, who works at Memorial Sloan Kettering and is a pioneer in the field of breast reconstruction and lymphatics.  He told me to go see him (they are close friends) and to read his articles.  As soon as I got home I looked him up, read this article about lymphatic regeneration after tissue transfer, and called his office to schedule an appointment.

A few short weeks later, I was in Dr. Mehara’s office.  He spoke really fast and had a lot of confusing things to say.  But here is what I understood.  A lymph node transfer is not a cure.  I’ll say that again, it is not a cure.  When it is done, at it’s best, it prevents the lymphedema from getting worse.  This was a huge disappointment to me.  I thought going in, that this was recommended to me because it would fix me.  I learned that this was not the case.  I also asked him about the DIEP Flap surgery helping my lymphedema.  He said it has helped with some people but not a huge percentage.  And, again, it would not be a cure.

This is the first time that I had to face facts and acknowledge that my lymphedema is forever.  It’s never, ever going away and I will have to manage it for the rest of my life.  This information suddenly weighed on my chest.  I couldn’t breathe.  The disappointment was more than I could bear.  Despite this, he suggested that I get a test called a lymphoscintigraphy which would provide pictures of my lymphatic system.

In the last year, I have been through some incredibly unpleasant medical procedures. But this one really bothered me.  On the suck scale, from sucking boogers to sucking sweaty horse balls, well, you can guess where on the scale I might be referring to.  The procedure entailed 16 injections.  Eight in the webs of my fingers and eight in the webs of my toes.

Fun Carrie fact…I hate my feet being touched.  It freaks me out!  I hate getting pedicures for this reason but suck it up once or twice a year.  So to have eight needles injected in between my toes as two nurses hold and spread them was just about one of the worst things I could think of.

After they injected my hands, I had the pleasure of having a machine, which I will name, “Sloth” scan me as my arms were place over my head.  I think I had to stay in this position for 45 minutes.  Cue major cramping and muscle spasms.  But I could not move or we’d have to start again.

The same thing with my legs.  The machine slowly scanned me for about 45 minutes.  Could I listen to a podcast?  Surf the internet?  No!  Just me and my thoughts about needles being stuck in my fucking toes!!!

After about three hours of tests, the nurse came back.  “We need more.” MORE????!!!!????  Back in the machine I go for another hour as it proceeds to scan my WHOLE BODY!  Oh, Sloth, how I hate you!

After four hours of needles and scanning, I was free to go.

“When will I know the results,” I asked?

“Well, I can see the results.  But I can’t tell you,” said the nurse. “Your doctor will call you on Monday.”

Bitch.

One week later (seriously) after many phone calls, I got a call from Dr. Mehrara’s nurse confirming that I did in fact have lymphedema in my arm.  They now wanted to schedule me for another test called an ICG Lymphography.  More needles.  This would give them a more detailed image of my lymphatic system and could tell whether or not I would be a good candidate.

But I knew I wasn’t a good candidate.  You see, I’ve always had swelling in my right foot and the lymphscintigraphy confirmed that I have a slow uptake of fluid in my right leg which puts me at risk for lymphedema.

I consulted more doctors.  I talked to every doctor and nurse that I encountered.  They all agreed with my concerns that this procedure was too new and that it could be too risky for me.  Why transfer a set of lymph nodes from one part of my body to my arm when 1) it won’t cure my lymphedema and 2) could possibly cause lymphedema in another extremity.  This was the end of the line.

I met with Dr. Mehrara this Wednesday.  I was supposed to have the ICG test but told him I didn’t want it.  He agreed that this wasn’t the right procedure for me right now.  One decision down.

Now, for my reconstruction, it has been a rough choice.  I have been thinking about it every day since my meeting with my plastic surgeon in September and I think I’ve made the choice I need to make but it’s not the one I want.  I will be getting the DIEP Flap surgery.

I remember thinking when I was diagnosed with cancer over a year ago, that I couldn’t wait until I got my reconstruction.  In my mind, it was the event that would end my cancer journey (for lack of a better word).  It would close the chapter on this part of my life and I’d be able to move on.  But cancer doesn’t work like that.  It throws difficult decision after difficult decision at you.  It is constantly testing you.  “Are you still strong,” cancer asks?  “How much more can you take?”  I guess we will find out.

What surgery did you have?

What was recovery like?

Did surgery help your lymphedema?