My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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.

1didyoudieofCOLCP


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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!!!!

 


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Lymphedema: 2 Years Later And Still Not Over It

Last year I wrote a very popular post, Lymphedema And How It Changed My Life.  It went viral…well, as viral as a lymphedema post was going to get.  It resonated with a lot of people.  I wrote about how angry I was at getting lymphedema after being diagnosed  with breast cancer and going through hell to get it out of my body.  I wrote about how uncomfortable it made me feel in my own skin; how ugly I found myself.  I wrote about how its very presence was a daily reminder of my cancer and the fact that it could always come back to my life in a terminal form.  I wrote about how sometimes I thought I would rather not live at all than live with lymphedema for the rest of my life.

I want to say that a year later all is well.  I want to say that a year later I’ve come to terms with this condition and the fact that it’s never going away.  I want to say that it no longer reminds me of the cancer that is in my blood stream right now, hiding, sneaking in and out of my organs.  I want to say that a year later, it’s under control.  But I can’t say these things.  I just can’t.

It’s a year later and I’m still pissed off.  I’m pissed that I have to take time out of my week, twice a week to keep my lymphedema under control.  I love my OTs at Shechter Care with all my heart and they are amazing, but even they are hoping that soon they can get me to the point where I don’t have to come so often.  I’m pissed off that I have to take time out of my day, nearly every day to pump my arm.  I’m pissed off that I have to go to sleep every night with my arm wrapped.  I’m pissed that I have to roll my wraps every night.  I’m pissed that when I look in the mirror, one of the only things I see is my big arm.  Nothing else.  I’m still pissed off that this was done to me.  I’m still pissed off that I didn’t get the care I needed at a time when this could have been kept under control.  I’m pissed that I don’t feel beautiful.

I’M PISSED!!!!!!

There are some positives.  This year I learned to wrap my bandages myself.  While I hate doing it, it gives me a sense of control.  I’ve been able to get swelling under control that way.  I believe that with hard work the swelling will decrease.  It already has.  It’s just take a super long time on me for some reason.

I also think that there are a lot of advances happening within the medical field.  More and more doctors are starting to understand this condition and are acknowledging that it’s a terrible condition to live with.  There are more studies and trials happening.  They are perfecting the lymph node transfer and other surgeries (although I don’t feel confident enough in the science to do it myself yet).  There is hope on the horizon.  I truly believe that there will be some real help for men and women like me in my lifetime.  Maybe not a cure but something that will make living with this condition so much easier.

I struggle every day knowing that I have to live with lymphedema the rest of my life.  I get depressed often.  But at the same time, I have hope.  I have hope that science will make advances.  I have hope that my body will finally cooperate and that there will be a turning point in my care.  I have hope that I will get this under control.

Maybe not today.  Maybe not tomorrow.  But maybe next year, on March 6, World Lymphedema Day, I’ll be writing a different blog post.  Maybe I’ll write about how I don’t hide myself.  Maybe I’ll write that I don’t think about my arm and cancer all day long.  Maybe I’ll write about how I feel like I can live my life confidently again.  Maybe, just maybe, I’ll be able to write about a major medical breakthrough.

One year…I can do one more year.


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1, 2, 3, Attack

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It happened at the gym a couple of months ago.  Earlier that day, I read about another young mother who had lost her life to metastatic breast cancer.  I followed her on Facebook and commented on her posts often.  I’m not sure she knew who I was but through her posts I felt I knew a bit about her and her life so the loss hit me hard.  And to see any child left without his or her mother just devastates me.

On that same day, the news was replaying a story of a young woman who lost her life to colon cancer (I think), but not before fulfilling a lifelong dream of being a contestant on Jeopardy.  I saw the headlines on my Facebook feed but didn’t really pay attention to it.

At the gym, I was doing my normal treadmill routine.  Running, walking, sprinting, walking….  I was doing fine, listening to music and watching the news silently on the screen in front of me.  I started one of my final sprints of the workout and on the news was the story of the young woman who died who had appeared on Jeopardy.  Suddenly, and seemingly out of nowhere, I broke down in tears.  I could not stop crying.  I had to hit the emergency stop because I couldn’t run anymore.  I was done.

The next time I went to the gym, the moment my heart rate went up, I started to get short of breath.  My heart began to flutter.  I felt weak and light headed.  It paralyzed me.  I tried to push through and I couldn’t.  I walked away from the workout.

The next few times I went to the gym, the same thing happened.  The moment I increased the difficulty of my workout, my body would shut down.

I mentioned this to my therapist and she said I was having a panic attack.  She advised that I alter my workout, either by going on a different machine or slowly working up to a more vigorous workout on the treadmill.  If I felt the attack coming on, to not stop but to slow down.

Her advice worked the first time.  I haven’t had an attack since.  But it shocked me that this happened.  I thought I was doing so well at managing my anxiety.  I guess the fear and anxiety of cancer is always there.  It might be dormant for a while but the monster could always be woken.

Has anything like this happened to you?

Did you start getting panic attacks after you got cancer?

 


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Two Places At The Same Time

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You may have noticed that I’ve taken a blogging hiatus.  I just haven’t been able to bring myself to sit in front of my computer and write about cancer lately.  I’ve had things to write about.  Nothing major, just life’s little post-cancer experiences.  It’s just…I don’t know.  I’ve opened up my blog to a blank page, stared for a while and decided that I’d rather just watch some tv or do thing online.  I haven’t even been reading the blogs (sorry friends, I haven’t forgotten about you).

I think this is coming from the fact that I’ve been all consumed with life post-election and Trump being inaugurated as our 45th president.  I haven’t been sleeping.  I’ve been obsessed with the news, both on television and of the printed variety.  I’ve been feeling helpless so I have been spending hours on the phone trying to get through to my Senator and Congressperson.  I’ve been signing petitions.  I’ve been sharing news stories on Facebook and commenting on others.  I’ve been going to protests and marches.

This obsession with resistance is the same obsession I had with breast cancer.  When I was diagnosed and up until a few months ago, I scoured the internet for information.  I lost sleep over it.  I read every article, blog and commented on everything.

But now, I just don’t have the mental and emotional space for both cancer and my new America.  I think my brain would explode if I spent too much time in both worlds.  So, I’ve left Cancerland for a while.

I’m not gone for good.  Even as I write this (it feels good), I’m thinking of all the things I haven’t written about in the last month.  Some good.  Some not so good.  But it seems, at least for now, my head and my heart can’t be in two different places at the same time.

I hope to write again soon.  I’m having my next surgery on Thursday, the next step in my reconstruction and Lymphedema Awareness Day is coming up.  I definitely want to write for that.

I just wanted to say, I’ve missed you all.  I hope you have missed me.  And don’t be offended if I haven’t read or commented on the things you have written.  It’s not personal.  You are still my community.

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This was at The Women’s March On Washington.  I’ve loved being part of the resistance and raising my voice.