My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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“Bell” Of The Ball

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

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

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

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

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

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

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

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

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

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

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

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

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The Scare + A Goodbye

I should start this post by saying, I do not have cancer again. (Let me repeat that for my own reassurance.) I do not have cancer again!!! But a few days ago, I wasn’t so sure.

It began last Thursday, when after PT for my lymphedema, I had a pain in my armpit. When I went to feel it, I felt a lump. I asked my PT if she felt it too, and she said she had. I panicked for a second but then convinced myself that it was likely a cyst or ingrown hair. I’ve had them before and they usually go away in a day or two.

But 4 days later, it hadn’t gone away. It didn’t even change size. I mentioned it to my husband, who felt it too and said to call my surgeon right away. I said that I would in a few days if it didn’t go away. But as the day went on, I started to get a pit in my stomach. I started to panic. I began wondering if this was all starting to happen to me again.

I tried to stay calm by reminding myself that I just had a clear MRI a month and a half ago. Surely that would have picked up on a lump that size. I also tried to reassure myself that I would have noticed a lump there before since I’m always stretching out the cords in my axilla.

But what if the lump was hidden underneath one of the cords that just broke. What if the cords have been hiding it and, now that they’re gone, it’s allowing me to feel it.

This thought began to take over. I was doing the dishes and suddenly I was hysterical crying. My husband came to me and asked me what was wrong. “It’s back! I think it’s back!”

It was a Sunday but I immediately wrote to my breast surgeon and oncologist. I didn’t care who wrote me back as long as someone did.

My surgeon got back to me that night, said that it didn’t sound worrisome but to come in anyway to have it checked out. I felt good that I had someone looking out for me but I was terrified that this was all happening to me again. AGAIN!

I started to make plans in my head. What would I do if I had to go through this all again. NO! I could not do it all over again; the surgeries, the chemo, radiation, all of the appointments… I don’t have it in me. But what if I don’t have a choice? What if it’s more than a lump? What if it’s all over my body? What if this is it and I find out that I won’t, in fact, get to see my son grow up? What happens then?

It’s all I could think about. Having to tell Oliver that the cancer was back. That I was going to be sick. And that, one day, who knows when, I wouldn’t be around anymore.

I was paralyzed by my emotions and fear.

My appointment with my surgeon was for Tuesday right before 1:00. My aunt came with me for moral support but we were both climbing out of our skins. I couldn’t believe that this was happening to me again. I tried to have some perspective but, when you have been through a trauma and it happens again, there is no perspective. Just tunnel vision and all I could see was cancer, cancer, cancer.

I was called into the office an hour late (they had squeezed me in). My surgeon came in to feel the lump. She felt it but said it felt like it was in the skin.

“No! It’s deep,” I said!! “It goes down deep!”

“No,” she said. “That’s not deep. That’s not a lymph node. It feels more like a cyst. But we are going to do a biopsy and a sonogram just in case. We can do it right upstairs. For peace of mind. Is that ok?”

I had known and prepared myself for this. I figured she’d want a biopsy. But now that she was actually saying it, I started to shake. But I agreed. I needed peace of mind.

My surgeon is on the 4th floor of my hospital and the biopsy is done on the 10th. So I hopped the elevator and there was no one in the waiting room. “Carrie Ellman-Larsen?” They were ready for me whether I was ready or not. My aunt had to stay in the waiting room and I had to go in alone.

So much of what we have to do with cancer is alone. I always knew that but it felt more vulnerable this time.

I entered the room where I was going to have my biopsy. I nice, small woman came in and began to search for the lump. First, she thought it was my scar. I redirected her finger to where the lump was. “I feel that. Ok.”

She turned on the sonogram machine and began looking around. “It’s mobile,” she said. “It’s hard to pin down.”

“Is that good?”

She found a smaller tool for the sonogram. When she found it, she pointed to the screen. “There it is.”

“There what is? What is it?” I didn’t dare ask out loud.  But there was something to be seen.

She then went to get the needle. She said that the needle would be even thinner than the ones we use to take blood. She said that she would stick the needle in, leave it in for about ten seconds to get a sample and then repeat the process.

My shaking suddenly stopped. Self preservation?

The needle pinched when going in, then there was an achy feeling while collecting the sample. But, thank goodness, it did not hurt.

When she was done, she took each sample and put them in between two slides. Then she said, “I’ll be right back.” The lab was literally in the next room. I would know within two minutes if I had cancer again or not.

The shaking began again.

I texted everyone to keep busy but also to let them know that the biopsy was done and that I was just waiting. I really needed the time to fly by. And it did.

A doctor walked in. “Oh, shit,” I thought!

“Well, it’s completely benign. It’s what we call ‘fat necrosis.’ It can happen after breast cancer surgery. It’s very common.”

I let out a huge sigh of relief and began to cry. It was over and I was ok. I didn’t have cancer. The fear just swept out of my body as if taken by a huge wind and was replaced by huge relief.

I went back down to see my surgeon who was happy as well but had a feeling that it was nothing. I go back to see her in six weeks for a follow-up, just in case. But already, the lump has shrunk in size significantly, although I still feel for it several times a day.

This experience has reminded me that we are never done with cancer, even if we technically are. We are imprisoned by our fear of recurrence. We know it can come at any time. We see it happen to our friends just as much as we see lifelong remission. We’re standing on a ledge and we don’t know which way we will tip. For now, my feet are still on the ground.

Which brings me to the goodbye portion of this post. As many of you know, Beth Caldwell passed away this week. I only knew her through her blog posts. I commented on hers, she may have commented once or twice on mine. But that was the extent of the relationship.

But I knew her best as a fierce advocate for Stave IV breast cancer. Despite her own pain, she co-founded Met-Up and testified for more research for Stage IV. She was an educator, a leader, a wife and a mother. Her daughter is in Kindergarten, just like Oliver.

I know she didn’t want to leave her family. She loved them so much. And when we see another one of our sisters pass, we see ourselves in them. We know that one day it can be us.

So, what are we going to do about it? Advocate. Demand money go to research for Stage IV. Donate. Hug our children. Do the things we love in life. Smile more. Take risks.

These are the things we can do to honor those like Beth.

Beth, thank you for all you have done. You will not be forgotten.

Fuck Cancer!!!!!!


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Almost Escaped Pinkotober…Almost

This year I decided that I would not even think about Pinktober.  I have written about it for the three past years and I don’t feel like I have any new thoughts on the subject.  Of course, I saw Pinktober stuff; lotions, bagels, moving trucks, t-shirts at breast cancer awareness days at schools…but mostly I escaped without having to deal with it at all…until last weekend.

Ken, Oliver and I went apple picking in New Jersey as we do each year (usually we go with friends but Oliver got strep throat on the planned date, so we went on our own).  It was a hot October day but we had a great time and got lots and lots of apples.  Then we went to a restaurant that we often go to in the area because they have a good kids menu, lot of adult selection and the quality is good (we’re food snobs).

I ordered something unusually fatty, a fried chicken sandwich with prosciutto and mozzarella and fries (I never order like this) and Ken got a burger.  When it arrived at the table, I didn’t notice anything alarming.  I was so hungry that I just pulled the pick out of one half of my sandwich.  But then Ken said to me, “Carrie, do you see what’s in the sandwich.”  I was like, “huh?”  And then I saw it.  My jaw dropped.

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Two picks on each half that said, “Save the ta-tas.”  One for each boob!  I couldn’t believe it.  Why would they put this in my sandwich?  Why?  If you really want to do breast cancer awareness at your restaurant, fine.  I really don’t have a major problem with it.  If you want to raise money along with that awareness, I’ll cheer you on.  But that’s not what this was.  This was two sticks that made a joke of my disease.  I was livid.

I decided not to say anything while I was there, mostly because I didn’t want to make a scene or make the server uncomfortable, which he didn’t deserve.  So, I ate half my sandwich and we left.

The more I thought about it, the more upset I got.  The more I felt like these picks were inappropriate, especially coming stuck into my meal.  So I wrote a letter on their Facebook page.

These little sticks came with my meal today. I am a young adult breast cancer survivor. I want to say that I think that when you bought these, you were thinking that they equated to support. Support is wonderful. But this is not what support for breast cancer looks like. This is sexualizing our disease and it’s offensive, inappropriate and ill informed. And to stick this message in my sandwich is just in bad, bad taste.

If you really want to support women with breast cancer, I can point you toward organizations that work exclusively on research for stage 4 metastatic breast cancer. Stage 4 is the only kind of breast cancer that is terminal. It can be managed but a man or woman with stage 4 breast cancer will be in treatment until treatment no longer works. I can also point you toward wonderful organizations that work to help men and women undergoing treatment to make life a little less sucky. You could donate a portion of your sales to these organizations. You can ask for donations on top of tips. But, no matter what you do, these sticks will not save any breasts. That’s not how breast cancer works.

Also, why “save the ta tas?” Why not save lives?

Breast cancer is not cute, funny or sexy and nothing you do can make it that way. In fact, 1 in 8 women will be diagnosed with breast cancer in their lifetime. 114 men and women die from metastatic breast cancer every day. And even when we get mastectomies, chemotherapy and radiation, the cancer can still come back and kill us by moving to the bones, brain, liver and lungs. Early detection does not save breasts. It can catch the disease early but that’s not a guarantee. So, “save the ta tas” really doesn’t make any sense.

Please consider how sticking these stupid little signs in a sandwich can be offensive and traumatizing. Even if that’s not what you meant to do.

They ended up responding and apologizing for offending me.  The chef is a 5 time cancer survivor and his intension really was to show support.  He hadn’t considered the fact that these might be traumatizing to some.  They agreed to take the picks off and not serve them again.

Originally, Ken didn’t think I should say anything about these picks but I felt like I had to. Because if I didn’t, will they have learned anything?  Would they ever have understood who ill informed they are?  What they did was the antithesis of awareness.  Awareness should be about knowledge.  Real knowledge.  Not cutesy little slogans

I didn’t escape Pinktober unscathed as I had hoped.  But maybe I helped by saving another woman from being re-traumatized.  Maybe, someone who read the post will think about donating money.  Maybe the chef or other workers will become advocates in the future and speak up about other injustices.   I don’t know.  Maybe I’m being idealistic.  But that’s who I am.

Have you spoken up when confronted with a Pinktober slogan or item for sale that made you red in the face?

How do you handle the onslaught of pink and cutesy advertisements during this month?

On the bright side, here  are some pictures from our apple picking adventure.

 


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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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Nancy’s Blogging Challenge

 

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Fuck Cancer!  Photo by my friend, Nicole at NicStudio on Etsy.  Buy this card.

I was working on another post for this week but I’ll postpone to do Nancy’s blogging challenge.  Thank you Nancy from Nancy’s Point for organizing this!

1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing.

At the time of diagnosis, I was 37 years old.  I had just finished breast feeding my son  (I did it for 17 months, go me!) when I touched my right breast and felt a large lump.  Breast cancer was common in my family so right away I was very suspicious.  Still, I waited 2  weeks to make sure it wasn’t a blocked duct.  After 2 weeks I felt again.  Not only did I feel the lump still there, I felt a second one as well.  I immediately went to my ob/gyn, who immediately got me an appointment with a breast surgeon.

One week, 1 sonogram, 4 biopsies and one mammogram later, I was officially diagnosed with breast cancer.  My son was just 18 months old and I was so scared I remember thinking I was literally going to explode; that my body couldn’t hold in all the fear.  It was terrible.

My official diagnosis was stage 2B breast cancer with lymph node involvement, ER+, PR-, Her2 low (almost Her2 positive, on the cusp and this qualified me for a clinical trial), grade 3.  My course of treatment was a mastectomy (I chose to do a single), chemotherapy: 4 AC, 12 taxol, Herceptin as part of a clinical trial, 15 sessions of radiation (also a clinical trial), and 10 years of tamoxifen.  I was also briefly on Zoladex but I couldn’t handle the side effects and my oncologist agreed that the loss of quality of life did not justify the small benefit of the drug.

Oh, and how I learned about my cancer…the asshole doctor who did the biopsy on me, after doing the biopsies said to me, “I’ll have the results for you tomorrow, just in time to ruin your weekend.”  True story.

2. What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?  

I think what the doctor said to me (see above) was pretty outrageous.  I mean, who says that?  The next day when he said matter of factly, “Well, it is cancer” also came out with the winner, “I don’t think this is going to kill you.”  Well, jeez…

3. What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

I hated it when people would tell me that I was going to be “fine.”  That word, “fine” would send me into a tailspin of anger.  It diminished the severity of the situation as just a nuisance and it was so much more than that.  It was life altering.

4. What is something you want others to know specifically about breast cancer?

I want others to know that you don’t need to be older to get it.  Many young women develop the disease as well.

I want others to know that getting breast cancer doesn’t mean you have to be changed for the better because of it.  You can be changed for the worse.  It’s a terrible thing to have happened.  That doesn’t mean don’t find positivity and beauty in the experience but there’s so much pressure to be better because of it, as if you weren’t pretty fucking great before cancer.

5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

I worry about recurrence EVERY SINGLE DAY.  Being young, with an aggressive cancer, I feel like a ticking time bomb.  Especially seeing others develop recurrence, it’s something I fear all the time.  Every head ache, stomach pain, gas pain, bloody nose is my cancer.  It’s a rough way to live.

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

Nope.  I think I was a pretty good person before cancer and cancer interrupted my flow.

7. What is your favorite cancer book?

I didn’t read many but When Breath Becomes Air was exquisite.

8. Besides your family, where do you turn for emotional support?

An ice cream container.

Other women my age that I met through 5 Under 40.

The bloggesphere.

My friends.

A therapist.

9. How many cancer blogs do you read and why do you read them?

Up until 6 months ago I read dozens but recently I needed to take a step back.  I’ve been so distraught by the current political climate that it has all become too much.  I haven’t been writing as much either.  I just need a break.

10. Do you call yourself an advocate? If so, what drives you?

I think when I was blogging more I did call myself an advocate but I’m not so much right now.  When I’m ready, I’d like to jump back in, help others who are newly diagnosed and finally get to work on my theatre piece (working with survivor’s personal stories to create original theatre).

Thanks again, Nancy!!!!


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3 Years Later

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One thing about getting older that baffles me is how fast time goes.  People tell me this all the time, especially with a young child.  “Enjoy it. He’ll be a teenager before you know it.” “It all happens so fast, enjoy every moment.” And it’s true. Suddenly I have a little boy going into Kindergarten when, just yesterday, he was speaking his first words.  The same can be said for cancer.

On August 1, it will be three years since my breast cancer diagnosis. Three years!!!!  It seems like it was yesterday and thirteen years ago at the same time.  Does that make sense?

I remember that the whole year that I was dealing with cancer was the slowest year of my life.  Other people would tell me how time flew by. Oh, no! Time dragged on much in the same way I imagine time slowing when one is imprisoned.  I was imprisoned by my illness and time would not let me forget it. But as life started getting back to…well, not normal, but just getting back…time began to speed up again.

And here I am.  Three years later.

A lot has changed. Nothing has changed. I still think about cancer every day but I don’t cry every day anymore. Breast cancer is still the thing that defines me, third only to being a mother and artist. It’s a huge part of my identity now, for better or for worse.

I still fear recurrence. The fear is not paralyzing like it used to be but every ache, pain, digestive issue, gas pain, skin blemish, nose bleed…I think it’s back. That hasn’t changed.

I’ve also found that even though I still think about cancer on a regular basis, I’ve had to try to distance myself a bit. I’m sure you’ve noticed I haven’t written much here lately.  And I’ve been reading fewer blogs (sorry to all of those I read regularly and love and respect so much) as well. I’ve found that dealing with cancer in my mind on a daily basis as well as reading and researching constantly was stunting my mental healing.  I’ve had to take a step back, at least for now.

I’m also aware that I’m only two years away from that magical “5 year” mark, feeling that these next two years are crucial.  Being so high risk, I feel like the next two years are a wait and see.

But I’m trying to take control. I’m exercising 4-5 days a week and I’m getting stronger (although the weight is very slow to come off). I’m also trying to eat better. Not perfectly but better. I’m trying to do things I enjoy, like take a Spanish class and go to museums and the theatre more.  Every day is still hard, but I’m trying.

I remember the day I was diagnosed.  I longed for it to be a year later, two, three…  I needed time to pass.  And it has.  Time is passing so quickly.