My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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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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Devastation and The New Fight

I try not to talk politics here.  This is a breast cancer blog after all.  But I have pause our regularly scheduled programming.   Something important has happened.

Most of you know by now but Donald Trump has won the United States presidential election.  Our country is shocked.  Even those who voted for him didn’t really think it was going to happen.  For many of us, it is the unthinkable, the worst case scenario.  But I don’t want to get into that here.  I don’t want to talk about right and wrong, educated and uneducated, bigoted and accepting.  My views are strong, that’s for sure.

What I want to talk about is how this election has felt so much like getting breast cancer (hear me out) and what it could mean for those with cancer and pre-existing conditions.

I started out on Tuesday, November 8th with so much hope.  I took my son with me to vote in the morning and we cast our vote for Hillary Clinton.  I was shaking with excitement because I believed she was going to be a great president, we were helping to shatter the glass ceiling and because Oliver wanted to help me do it.  Oliver and I spent the day doing wonderful things around the city; going to Chinatown to find Oliver Street, going to Bryant Park to ride the carousel, eating too many treats.  It really was special.

But after I put Oliver to bed, with the promise of a beautiful tomorrow, things started to turn.  By 9:30, things were not looking good.  My stomach started to sink.  The rest of the night, the waiting game, was like waiting for my cancer diagnosis.  I know that sounds dramatic but the feeling was similar.  The same dread.  The same lack of control.  The same deep knowing of what was coming.  Like the time of my diagnosis, I started to cry and I didn’t stop.  I didn’t sleep.

By 2:30am, I had gotten one hour of broken sleep.  The announcement was made.  I was devastated.  I didn’t sleep again.  Just like my diagnosis.

The next day, like many New Yorkers, I was in a daze.  I wavered between shock, denial and devastation.  Just like my diagnosis.

And just like my diagnosis, days later, I am ready to fight.  I have fought the cancer within my body and now I’m ready to fight the cancer in our society.  Consider my gloves on!

No matter where you stand politically, if you are reading this blog, we all have something in common; a pre-existing condition.  I am so lucky to be on my husband’s wonderful insurance.  I am in a good place.  But there are so many who are part of the Affordable Care Act (ACA) who stand to lose so much.  I know that Trump recently said that he will protect those with a pre-existing condition.  But he has flip-flopped so much, we can not trust anything he says.  I can see him saying “I never said I’d protect people with pre-existing conditions.  That costs way too much money!”  And even though I have my husband’s insurance, it’s always possible that he could lose his job.  And then what?  That frightens me and I think it should frighten you.

I don’t have any solutions now.  Words of advice or comfort.  I’m not there yet.  These things just need to be said.

I hope that no matter how you voted, we can come together and love each other.  I really do hope this.  Because come January, we will need each other more than ever.

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Fear Of The Unknown

 

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We all know what it feels like.  That feeling that there’s a secret that’s lurking in our bodies.  That dread that what can’t be seen or felt or known is hiding inside of us.  It’s inescapable.  The fear of the unknown.

I went for my three month checkup with my oncologist last week.  This was the longest separation I had experienced from her since the year and half I was diagnosed.   It was a routine appointment without incident.  I had questions about some side effects of the new medication I would be starting.  But my last question was about recurrence.

“How will I know if it comes back before I’m symptomatic?”  I asked because at my cancer center, they do not do blood tests for cancer markers.

Her answer was, “Well, we won’t know until you show symptoms like a cough without a cold or a persistent headache that won’t go away.  Then we’ll do some tests.”  And that’s it.  That’s all they can do.

I understand and even agree with the reason why they don’t do blood tests for cancer markers at my hospital.  My oncologist said that it hasn’t been the recommendation since 2006 and she and the hospital fully support that recommendation.  She said that this test creates too many false positives.  False positives result in testing which contain radiation.  Why would we want to subject our bodies to more radiation than is necessary?  Then, if there’s a false positive and we don’t see anything, we have to test again to see if anything changes in the next few months.  Then, how are we spending the next few months?  We are spending it filled with anxiety and fear over what might be happening in our bodies.  And that’s no way to live.

“But what if something is growing?  Don’t we want to know about it sooner rather than later,” I asked?

“It doesn’t matter if we catch it when it is small or when it has caused symptoms.  We don’t treat any differently.  You get the same treatment.  And early detection at stage four has not shown to affect or alter the length of survival,” she informed me.

So, what that means is, I could have a small dot in my brain and if we catch it early, we could treat it and I could die in a year. Or not.  But if we catch later, I’d get the same treatment and I could still die in a year.  Or not.

I spoke to my therapist about this recently.  I described it as like having a piano hanging over my head ready to plummet at any time.  It may never drop or it might snap after the slightest breeze.  Anything can happen.  We can never predict or know for sure.

And that’s terrifying.

But this is it.  This is how I live the rest of my life.  This is the gift that cancer has presented me.  A life of uncertainty.  I fear not knowing what is happening in my body.  The fear of not knowing what the next day will bring.  Because I understand that life can change in an instant. So I live afraid.  I live fearing the unknown.

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Affirmations That Are Pissing Me Off (Or Am I Just a Bitch?)

Ok.  I admit it.  Since being home from the hospital, I’ve been spending a little too much time on Facebook.  Not that I didn’t before but I’ve taken it to a whole new level.  It’s not healthy.  But it’s been good because I don’t have a huge attention span right now.  I’m super tired all the time so it’s been great entertainment.   That is, until the other day.

I was scrolling through the different posts and I came upon this aphorism from The Breast Cancer Site and it pissed me off.  It got me really angry.aphorism 1

Now, before you decide that I’m a total bitch…and hypocrite, for that matter, let me explain myself.  I love affirmations as much as the next person.  I’ll “Keep Calm and whatever” all over my Facebook page.  There are certain affirmations that help me lift my spirits, remind me of what is important or help me focus on a goal.  Like this one.

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A quote like this, by the glorious Dr. Maya Angelou, reminds me that my struggles are real but I have to keep going.  I can get thrown down but I must get up again.  Why?  Because what other choice do I have?  Maya Angelou, Ghandi, Nelson Madela and many others knew that.

But some of these other affirmations, that have been posted recently on The Breast Cancer Site’s Facebook page have been angering me.  As affirmations alone, they’re fine, I guess. Not overwhelmingly inspiring.  But in the context of breast cancer (or any cancer/illness, for that matter), I find them offensive.  In recent days, they have posted these as well.

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Let’s break this down a bit, starting with the first affirmation.  “Obstacles are put in your way to help you determine if what you want is worth fighting for.”  I think this would be a great thing to say to yourself if you were running the Tough Mudder.  If I had to run through ice cold water while getting electric shocks, this saying would be really fucking helpful!  I’d say it over and over!  But for breast cancer?  Was breast cancer given to me so that I would really know that my life is worth fighting for?  My family?  My child?  My dreams?  I needed cancer for this?  So, I should tell all my friends, “You know, it wasn’t until breast cancer that I really knew that my life was worth fighting for.  I hope you all have this get to experience this as well so you can fight as hard as I have so you realize what you really want in life.”  Fuck no!!!!!!!!!

“It’s time that you realize you’re worth a hell of a lot more than you think.”  Because, my self worth before cancer (BC) was so low, so shoddy, that I didn’t think I was worthy of the good things in my life?  I needed cancer to teach me that, of course.  Thank you so much, breast cancer!!!  I now realize that I’m so fucking awesome and everyone should love me and great things should happen to me all the time because I’m AMAZING!!!!!!  This could never have happened without YOU!

“Once I overcame breast cancer, I wasn’t afraid of anything anymore.”  Shall I make a list of things I’m still afraid of, or even more afraid of because of breast cancer?  Why not?  Let’s have some fun here.

  1. Dying
  2. Needles (yep, still afraid of those)
  3. Surgery (yep, still afraid of that)
  4. Infections
  5. Recurrence
  6. Recurrence with metastasis
  7. Mammograms
  8. MRI’s
  9. Any scan that can show that something is wrong with me
  10. Life long lymphedema
  11. Not being around to see my son grow up, get married and have his own children
  12. Cockroaches (the big ones)
  13. Most insects, for that matter
  14. Falling (not to be confused with heights.  Heights are fine, falling from them is not.)
  15. Skydiving
  16. Dogs that bark too loud
  17. Dark, empty allies
  18. Dying before I change the world
  19. Dying before I see the world
  20. Torture
  21. Racism
  22. Donald Trump
  23. Putin
  24. ISIS
  25. Drowning
  26. Ignorance
  27. Lack of Education
  28. The people who run the NYC Department of Education
  29. The people who run the NYC MTA who keep hiking up fares but cutting service
  30. The rich people who are pricing me out of the city I love

I could go on but, I think 30 is a fair start.  Breast cancer is scary.  It’s really scary and I think I was brave as I underwent (undergo?) treatment.  But that suit of armor that we all put on to get through all of the tough shit that accompanies a cancer diagnosis, comes off.  It gets taken away and suddenly we’re left to fend for ourselves without any protection.  Is breast cancer scary?  Yes.  But I’ll be damned if beating cancer for now means I’m not supposed to be scared anymore.  That I’m some fucking Xena Warrior Princess who walks down Broadway screaming “Get out of my way, motherfuckers!  I beat breast cancer!  What have you done lately?”  I’m scared.  I’m scared every day of my life and I can’t imagine that a day will come where I won’t be frightened.

When you put these affirmations on a website or Facebook page for people with breast cancer or those who have survived it, I think you need to be careful.  The intentions are good.  But it alienates us that don’t fit into the “my cancer was a gift” or “my cancer made me stronger” or “my cancer made me a better person” model.  I will never be that spokesperson.

Maybe since my body had been ripped apart again, I’m feeling a little bit cranky.  I don’t know.  But this has really upset me.  Am I overreacting?  Am I being a total killjoy, a complete bitch?  Or are they forgetting those of us who are forever destroyed, in some way, because of this assault on our bodies?  I think it is the latter.

 

**I shared this post on the Visitor Post portion of The Breast Cancer Sites Facebook page, asking them to consider my point of view and to please share it for those who are experiencing breast cancer like myself and many of you.  I checked back this morning and it looks like they removed it from their page.  I find this hurtful.  Simply because I do not have the same cheery point of view, I don’t fit in there.  What a shame.  Sometimes their silly puppy videos gave me a smile.**


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The Whatifs

Last night, while I lay thinking here,
Some Whatifs crawled inside my ear
And pranced and partied all night long
And sang their same old Whatif song.

-Shel Silverstein

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I might be freaking out a little bit.  Just a tad.  My DIEP Flap is in just a few short hours and well…I want to run away.  Far, far away.  I’m questioning every decision I have made, every bit of research I have amassed over the last three months and every piece of advice I have gotten from numerous doctors.  They mean nothing to me right now.  Fear is the supreme ruler and I have a serious case of the Whatifs.

What if I can’t walk into the O.R.?

What if my knees give out?

What if I throw up?

What if I wake up in the middle of the surgery?

What if I never wake up from the surgery?

What if it hurts so, so, so, so, so much?

What if there are complications?

What if I have to stay in the hospital longer than expected?

What if I get an infection?

What if my surgeon fucks up?

What if I don’t like my new breast?

What if it takes months or years to heal and get back to normal again?

What if I can’t hold my son for a long period of time?

What if my son throws temper tantrums and I can’t do anything about it because I can’t lift him?

What if my son hurts himself and I can’t do anything about it because I can’t lift him?

What if my son forgets about my “boo-boos” and jumps on me and tears my scars?

What if my son is afraid to hurt me and then doesn’t let me snuggle him?

What if I don’t see my son for days and I miss him so much it hurts?  There’s no pain medication for that.

What if I can’t get back to work when I planned?

What if I physically can’t work the way I hope to in a few weeks?

What if this surgery doesn’t help my lymphedema?

What if the surgery makes my lymphedema worse?

What if I die?

What if I regret it all?

What if I made the wrong decision?

What if, what if, what if, what if, what if?

 

Everything seems swell, and then
The nighttime Whatifs strike again!

-Shel Silverstein

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Off My Game

So, I’ve been a little off this week.  I’m distracted with a possible new side effect, lymphedema and it’s completely freaking me out.  I don’t know that this is what I have, I’m going to be looked at tomorrow, but I’m so tired and frustrated.  Just when I am starting to feel good, something else could be going wrong.

All the thoughts about the consequences of living with lymphedema (I’ll get into that if it turns out I have it) have been having an effect on my work.  I’m just not on top of it like I usually am.  I’m distracted and unfocused.  I know that this can happen with anyone for any stressful reason so, my question is… when life is getting you down, when you are just not yourself and not at your best, what do you do to snap back into it?  Any tricks?