My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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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Budapest, Part 2

Here is part two of our family trip to Budapest and Vienna.

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Heroes Square

 

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Candy at a street market

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Vajdahunyad Castle

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Trampolines at City Park

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Liberty Bridge

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Chain Bridge

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Parliament at night

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You can even go to Brooklyn in Budapest

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Yummy meal on a snowy spring day. Bone marrow

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sweet pickled cabbage

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Lamb paprikas with bacon wrapped cheese noodles. At Ghetto Goulash.

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Entrance to the Gellert thermal baths

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Last view of Budapest, 5 minutes before leaving for the airport

 

Next week, our day trip to Eger, Hungary.


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Family Vacation Part I (Of Many)

It’s been a month since we got back from our first overseas trip as a family.  Budapest and Vienna were amazing!!!  So spectacular.  I fell in love with it as our plane was descending and I could see the Hungarian farmland stretching for miles.  I wondered, are any of the things I am seeing the same things my grandmother or grandfather saw at one time in their lives?  Could any of these people be extended family or descendants of neighbors that survived the war?  My connection to this land was immediate.

I remember my grandmother telling me about the beauty of Budapest.  She was spot on.  The architecture was unbelievable and the modern mixed with the historic was a visual overload for me.

We are so lucky that we were able to take this trip.  If there is any positive to chemo killing my fertility, it’s that we can afford a (inexpensive) plane ride for three.

I was proud to share my heritage with my husband and son and I’m so excited to share my pictures with all of you.

In all, I took about 4000 pictures on our trip.  Only a few hours after landing, Oliver exclaimed, “Mom, how many pictures are you going to take?” I know, crazy right?  Here are some to start you off.

**Disclaimer: I wouldn’t blame you if you didn’t want to look through all of them.  I’m having trouble showing you all my favorites because they are all my favorites!

 

 

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And, we’re off!!!!

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First view of Hungary from the airplane.

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Central Market

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Our first meal! It was so yummy.

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Chimney cake, my first of many.

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Inside Parliament. My picture doesn’t do it justice.

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Someone wasn’t into the audio tour.

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Outside Parliament. I could study that architecture for hours.

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Oliver took this photograph. He ended up taking some amazing pictures on this trip.

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I made sure to find playgrounds for Oliver each day. Luckily, Budapest had great ones all over the city.

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Hmmm…which streudel to get?

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Holocaust Memorial. So simple. So powerful.

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Selfie at the Chain Bridge.

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View of Pest from the funicular going to Buda.

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The view from Buda was absolutely breathtaking.

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Don’t even get me started on the pastries!

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A Star Wars themed sausage joint in the Jewish Quarter. It seems kitschy but the food was amazing and there was always a huge line out of the door of both locals and tourists.

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The old mixed with the new on a street in the Jewish Quarter.

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The weeping willow at the Synagogue.

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Budapest is getting into the street food scene and Karavan had a lot of interesting choices.

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The Budapest tasting at New York Cafe.

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New York Cafe. Back in the day you could buy a cup of coffee and sit there all day. It was so ornate and wonderful.

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View from the Basilica

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About 350 stairs to get to the top of the Basilica.

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The Budapest Eye. It was a beautiful ride.

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Budapest rainbow.

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Oh, those chimney cakes!

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We found a model train museum. If you go to Budapest with a child (or not), Miniversum is wonderful. We all had a great time.

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The Opera House was so beautiful. Unfortunately, we missed the tour by 5 minutes so we only got to see the entrance. It’s supposed to be wonderful.

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Andrassey Avenue

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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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