My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Oh, Snap!

There is a sound.  It’s not quite a sonic boom but it’s fast and forceful.  The camera cuts to birds flying out of the trees, fleeing from the danger that the sound must bring.  The camera cuts to me, standing in shock.  As the camera pans to a closeup of my face, you can see tears welling up in my eyes slowing, promising an overflow within moments.  As dramatic music begins to swell in the background, I breathe in suddenly, as if I’d been holding my breath for hours.  Suddenly, a single tear escapes my eye, my face relaxes and the audience realizes that this is a moment of relief.  A release.  That all is well again.

This has been one of my many fantasies that I’ve had about my cords, or axillary web syndrome, breaking or snapping.  I have suffered from persistent and stubborn cording for almost three years now.  And I do mean “suffered.”  While I have had excellent range of motion, the cords have been extremely painful.  Especially my armpit.  Every time I lifted my arm, it was a tight, stretching pain.  I could feel the pull go deep into my chest wall beneath my once upon a time breast and into my scar tissue, down my arm and into my hand and fingers.  Does that make your skin crawl?  Well, it’s not pleasant.  But it was my normal.  I actually got used to being in discomfort.

For those of you who don’t know what cording is, it can occur resulting from a sentinel node biopsy or axillary lymph node dissection during a mastectomy.  One can develop rope or string like structures in your arm.  This can inhibit range of motion and be quite painful.  It is usually diagnosed by a physical therapist or lymphedema therapist (it is separate from lymphedema but can sometimes go hand it hand).  It is posited that most cases for cording resolve within a few weeks to a few months with stretches and therapy.  Read more about axillary web syndrome here.

But I stretched.  I stretched every day.  I went to therapy once or twice a week.  We pulled the cord.  We massaged the cord.  We dug into the cord.  We sang to the cord.  We breathed deeply into the cord.  And we definitely begged the cord.   And each time, nothing.  It would not move.  It was intent on staying exactly where it was.

Then, last week, I was laying on my couch watching tv and I was stretching my arm and with my left hand, stretching the cord as my OT does at her office.  I do this a lot in hopes that it will do something.  It never does.  But last week, out of nowhere I felt the most gentle pop.  It wasn’t even a pop.  It was an effervescence.  And suddenly, in the area where I was experiencing the most pain, the pain was gone.  There was some soreness where the cord had been but the rope like structure in my arm had suddenly disappeared.

Had I done it?  Had I achieved the impossible?  I went to be in disbelief, thinking I might have given it a good stretch.  But when I woke up, it was still gone.  I did it.  “I got you,  you fucker!!!!!!”

I had won the battle but not the war.  There were still more cords.  I still stretched every day.  One day I felt a pop in my wrist by my thumb.  I could always feel several cords there.  The pop felt like when I crack my knuckles (which I sometimes do with my wrist but near my pinky, never my thumb).  When I went to feel the cord, it was gone.  GONE!!!!!!

Then the other day, I was stretching again, and there was a thin cord.  Thin but mighty.  It caused a sharp pain every time I touched it.  But I was used to that pain.  I pulled it.  I tugged it, I dug under it and pulled it up.  Nothing.

But when I woke up in the morning, it was gone.  GONE!!!!!  Another one bites the dust!

I always imagined that when these cords went away, that there would be tears of relief.  But, the snap was so subtle and undramatic, that I didn’t know what to make of it.  With the last cord, I just continued putting cream cheese on my son’s bagel as if it were a normal morning.

I know that there are still more cords that I need to snap.  I can feel them and they are deep in my arm.  Really deep.  But I don’t feel hopeless anymore.  I know that I will get them one day.  My cords might be stubborn but so am I.

 

Did you have cording?

How long did it take for your cords to snap, if they did at all?

Do you have any magic tricks to make them disappear?

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

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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.


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Family Vacation, Part 3: Eger, Hungary

Last week’s post was pretty serious so I want to break things up a bit with some more family vacation pictures.  They make me happy.

We decided to take a day trip to Eger (pronounced egg-air), Hungary.  It was hard to choose one day trip.  There were so many places I wanted to see, including the town where my great-grandmother is buried, but it was too hard to get to.  And there was a lot to see and do in Eger.  It seemed like the right choice.

And we were so lucky because the day they were there, all of the locals were dressed in period costume and having archery contests.

Eger is famous for it’s castle, thermal baths and it’s wine, especially Bull’s Blood, a full bodied red wine (so good!!!).  Here are some pics from our day.

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This is the main train station in Budapest.

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Oliver loved how you could see the tracks and the trains as soon as you walked in. And look at that ceiling!

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The train had huge windows to look out of.

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Along the trip, these beautiful yellow flowers were blossoming as far as the eye could see.

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Just a sweet picture of my guys.

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Oliver snapped this of me while I was looking out of the window. I kind of love it.

Once we arrived, we took a short cab ride into the town.  We were starving so the first thing we did was find some lunch.  It was so yummy!!!

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Strawberry soup. It’s a cold soup made with strawberries and sour cream. My grandma used to make a version with cherries. It’s a soup but it’s like a dessert. It’s basically the best thing ever.

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I had schnitzel on this trip more than I care to admit. I love schnitzel!!!

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I also love paprikas!

Eger has a really cool history.  This blurb was taken from ricksteves.com.  Eger is “famed as the town that, against all odds, successfully held off the Turkish advance into Europe. Working their way up the Balkan Peninsula, 60,000 Turks arrived in Eger on September 11, 1552. Some 2,000 Eger residents, fighting from within their castle’s protective walls, held the line against the advancing invaders. After a 38-day siege, the Turks retreated in defeat. Sadly, they returned in 1599 and, this time, succeeded in conquering the castle. The Turks sacked the town and controlled the region for close to a century.”

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Depiction of the Turks invading Eger in 1552. The Hungarians held them off in a 38 day battle.

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Locals dressed in period costume and engaging in archery contests throughout the town.

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View of Eger from the castle walls.

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Doesn’t Eger look like a storybook village?

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The beautiful, quaint streets of Eger.

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Town center.

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We let Oliver take control of the camera several times on this vacation and we found that his pictures were some of our favorites.  Here is Eger from Oliver’s perspective.

That’s Eger!  Going there made me want to explore all of the small towns of Hungary but, alas, we were soon heading off to our next destination, Vienna.  The final part of our journey to come next week.


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The Question

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I’ve always known he’d ask.  That he’d put two and two together.  I just never imagined that it would be so soon.

Oliver and I were lying in his bed as I was snuggling him to sleep.  At one moment we were talking about his day and with no segue at all he asked me again (he asks me a lot), “Mommy, why did they have to take off your breast?” I gave him my usual answer. “There was something in my breast and if we didn’t get it out, it would have made me very sick.”

Usually, he leaves it at that, or begins to ask my questions about having the surgery, did I feel anything in the surgery, questions about my reconstruction, etc…  I always answer honestly.  But this time, tonight, he asked me the question I have always been dreading.

“Mommy, if they didn’t take away your breast, could you die?”

“Yes. But, they did take my breast and now I’m healthy again.”

I heard him breathe in and out, gently.  He took in that information.  I’m not sure how his little brain processed this because he followed it up with his usual questions. “How did they make you a new breast?” “Were you in pain?” “How long were you in pain?” “Did it make you sad? Do you feel sad now?”

After he asked me all of his questions, he very wisely said, “Wow, that was a big conversation.”

Yes.  Yes it was.

These questions…these questions I never wanted my child to have to ask.  But cancer has made us all age beyond our years

I thought that when Oliver asked me about my cancer and death, I’d feel sad.  That I would ache for him knowing that his mother had faced mortality and that he could be directly affected by this.  But that is not what I feel.  I feel proud of him.  I feel proud that he was brave enough to ask the question.  I feel proud that he is so smart and intuitive, that he could come to this conclusion himself at such a young age.  I’m proud that the weight of this conversation was not lost on him.  He totally gets it.  But I’m most proud that he feels comfortable asking me.

One of the last things I said to him before he fell asleep was, “I know that this was a big conversation.  But I want you to know that I will always tell you the truth. Is that ok?”

“Yes, mommy.”

He turned over, snuggled his back into my chest, and fell asleep.


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Am I Lucky?

This week in the United States, the House pushed through a bill that would drastically reduce care for those with pre-existing conditions and substantially increase the cost of having a pre-existing condition, making it pretty much unaffordable.  A pre-existing condition can be anything from cancer to ADD, acne to autism, cerebral palsy to diabetes,  a c-section and possibly even sexual assault (although I’m now reading that this is more complicated than the bill saying that rape is a pre-existing condition, which it does not).

If this bill passes in the Senate and becomes law, it will be devastating for millions of families…millions upon millions upon millions.  There is literally no one I know, both in and out of the cancer world, who this will not negatively effect.

I want to be clear, the ACA is not perfect.  Not by a long shot.  It has a lot of problems.  While one of my friends who is on it say she is now paying less monthly for her family for better coverage, two others say that they are paying more monthly in co-pays and deductibles that they can’t even meet.  Why is this?  I’m not sure but it does seem unfair .  It needs fixing.

But it seems to me that signing the death certificate of so many who need life saving medical care is not the answer.  This bill is far from the answer.

After the new healthcare bill passed in the House, I said out loud, to myself, “Wow, I’m lucky I got cancer when I did.”  Then I suddenly stopped breathing for a moment, realizing the thought that I had just spoken out loud.  I was LUCKY to get cancer when I did?  Then, by the same token, I was lucky to have had a difficult birth experience and have a c-section when I did.

To say something like this is crazy.  Just crazy!  Because no one is lucky to get cancer…EVER!  But at the same token, I can’t help but wonder if I dodged a financial bullet.  Being on very good, employer based healthcare (something I do not take for granted and yes, I know how lucky I am) we’ve come out of the cancer experience in financial tact.  There are countless others who can not say the same thing.  I know that.  But under this new bill, if my cancer were to come back, which it can at any time,  my care could bankrupt my family.

The question I would face, and that so many others face now and will certainly face if this new bill goes through is, what is my life worth?  Is it worth bankrupting my family for a few more months?  Would people just give up the fight for the benefit of the future generations?

Why should anyone have to make this choice?  Isn’t every life precious?  Don’t we all deserve to be here for as long as possible?  Don’t we all deserve the same access to top-notch care?

This healthcare bill literally makes my stomach turn when I think about what it means for the cancer community and beyond.  And I’m more sickened that I sighed a breath of relief that I got sick when I did.  But, it’s true.  I’m lucky.  I got cancer when it seems that our government cared, even just a little bit, about whether I lived or died.

I can write a book about what I think are the long term implications on our society when we put a bill like this one into place.  But just imagine, who will be left if no one could afford life saving measures?  Only the richest few.  What would America be?  Who would we be?

Hmmm….I see a dystopian novel in my future.

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I Haven’t Told Y’all But….

I’m going to Budapest!

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And Vienna!

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On Monday!!!

My maternal grandparents were from Hungary so visiting has been a dream of mine for a long time.  I’m so excited but I feel so unprepared.  I usually have every moment planned and know everything about everything!  I’ve been too busy  for that this time around.  So, I’m just going to have to go with the flow a bit.

I can’t wait to share all of my pictures with you all; the architecture, the food, the people, the food, Oliver, more Oliver, THE FOOD!!!!!  And you know that there will be dozens of pictures to share with you.  See you all soon!!!!