My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Mommy Mondays: Bucket Lists

I don’t love bucket lists.  It suggests that you are going to…well…kick the bucket.  And sooner rather than later.  But I do believe in “must do” lists and things you want to accomplish in your life.  I have a few things on my list: travel to India, Nepal, Tibet, New Zealand, Vietnam, Spain, France, Kenya, South Africa….and on and on…learn the ukulele, relearn the cello, perform more…I can continue but that’s not what this post is about.

Oliver has his “must do” list as well and today we checked one off.  We took the subway to Grand Central Station and took the Metro North train (one must do) to Peekskill, NY where they have a railroad crossing (number two must do) that you can watch from a playground as Metro North and Amtrak trains (number three must do) pass by.  He was so excited!

And you know what?  So was I!!!  If you told me two years ago that I’d be jumping and cheering at the “ding, ding, ding” of a railroad crossing going down, with the lights blinking and all, I’d tell you that you were crazy.  If you told me I’d take my child’s hand and run like the wind to see a train pass for all of five seconds, I’d tell you that you were nutty.  If you told me that I’d stand in one place for an hour to watch train after train pass by, I’d tell you…you get the idea.  But all this happened.  Today.

Here are some pics from our day.  I’m not in any of them.  I had the camera the whole time.

On Metro North.  Oliver stayed like that the whole time.  He couldn't stop looking outside the window.

On Metro North. Oliver stayed like that the whole time. He couldn’t stop looking outside the window.

There were worker trains on the track the whole time and loved watching them.  He also loved crossing back and forth across the tracks.

There were worker trains on the track the whole time and loved watching them. He also loved crossing back and forth across the tracks.

Patiently waiting for the next train to come.

Patiently waiting for the next train to come.

The lights are blinking!!!!!

The lights are blinking!!!!!

Look at his fist on the right!  He's gripping it with excitement but his face is calm, cool and collected.  I think I found his tell.

Look at his fist on the right! He’s gripping it with excitement but his face is calm, cool and collected. I think I found his tell.

The passing train.

The passing train.

The look of satisfaction when your dreams come true.

The look of satisfaction when your dreams come true.

Do you have a bucket list?  A must do list?  For yourself?  For your family?  Do you also live vicariously through your child?

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Like The Sheep

photo from sunnyskyz.com

photo from sunnyskyz.com

Have you guys heard about the sheep that evaded shearing for so long that it developed a coat of fur that was 89 pounds and made him the size of “a mini cooper?”  It’s true!  This New Zealand ball of fuzz named Shrek, somehow got separated from it’s flock and was never found.  Until a farmer saw a cloud of white in the distance.  It lived and survived on it’s own for years but, unlike it’s friends who got regular hair cuts, his hair grew so long that he could barely see out with his eyes and, if he fell over, he would become dingo dinner!!!

Some articles, obviously poking fun at this poor little sheep, claim that it didn’t like haircuts and ran away, free to grow it’s wool fro.  It wanted to be free.

I think I understand just how Shrek feels.  As my hair grows, I think I might be in need of a little shearing myself.  My new chemo curl is thick and fluffy.  Uncontrollable without some mousse to tame it.  There are times when I want to go to a salon and get it styled.  But then I think to myself, “What, am I crazy?  I spent the better part of 2015 looking like one of those hairless cats.”  It was not my best look.  The idea of a scissor coming near anything that is growing on my head freaks me out!  I don’t even Nair my Jewstache!!!

So, what do I do?  Face the scissors for the sake of a possibly neatened up style but lose some length?  Or do I let it grow and grow until I can’t see in front of me and I nearly tip over from the weight?

Here’s what I look like now at six months post chemo.  What should I do?

6 month hairWhen did you get your first hair cut post chemo?  Was it a difficult decision?


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Discrimination

Discrimination

noun
1. an act or instance of discriminating, or of making a distinction.

2. treatment or consideration of, or making a distinction in favor of or against, a person or thing based on the group, class, or category to which that person or thing belongs rather than on individual merit:

racial and religious intolerance and discrimination.

3. the power of making fine distinctions; discriminating judgment:

4. Archaic. something that serves to differentiate.

disability_isnt_a-21019I guess I’ve been really lucky so far.  I haven’t ever been denied an education, job, shelter or any other needs or wants based on my race, gender, sexuality, economic status, religion or anything else.  I’m constantly aware of the discrimination problem that exists in our country every day, hour and minute but up until now, it’s been something that happens to other people.  That is no longer the case for me.

About a month ago, I got a call from an employer that I have been working for for about 4-5 years.  He told me that he was taking me off his roster of teaching artists because of my “lack of availability and flexibility to go to schools last year.”  I was shocked.  Completely thrown.

“Well, you know that I lacked availability because I had cancer, right?”

“Oh, yes, yes!!!  I hope you’re doing better with that!”

This employer and all of my employers got either personal phone calls or, as in this case, a one on one meeting at the time of my diagnosis to fill them in on what was going on with me.  I detailed my treatment plan and expressed my desire to continue working throughout treatment but would need certain accommodations.

  1. I could not work with grades 2 and under.  They don’t know how to cover their mouths when they sneeze and spread germs easily.  I had to protect what was going to be a very fragile immune system.
  2. I would need to work around my treatment schedule.  Meaning, 2-5 days after my infusion, I will probably be out for the count.  But that left around 9 days within a two week period that I would be able to work, unless I fell sick or side effects were worse than expected.
  3. I did not want to commute to far off places.  Spending 2 hours each way on a subway did not seem like the healthiest choice for me because of a) germs and b) the physical toll that commuting in NYC takes on the body, mind and soul.

All but one organization agreed to accommodate my needs, including this one.  They even seemed to pledge their support.  (The one organization that didn’t make accommodations was because most of the work they had was either with very young children or at a school far away from my home.)  I felt so lucky to be working for people that would stand by me.

And most of them did.  Going as far as making sure I knew that I would not be treated differently but if the work became too much, to just let them know and they would get me a replacement.  They all had my back.  I felt so lifted and supported!

Except for this particular organization.  If I got an offer for work from them (and I didn’t get much) the tone was that they were doing me a favor.  One offer was for a school that needed me at a particular date and time.  No flexibility.  Unfortunately, I had treatment that day and couldn’t go.  Another offer was similar.  The school could only accept artists on certain days and one was on an infusion day and the other was a day that I already had work.  The third option and one I felt I couldn’t turn down because I didn’t want to piss them off, was so far out in Queens that it took 2 trains and a bus to get there…that’s a 2 1/2 hour commute each way!  I ended up driving even though it was a terrible winter.  But I did it just to maintain good relations.  But taking this job nearly killed me.  It was physical work, all day long and poorly organized by the organization that didn’t provide the correct materials which left me scrambling to make it work.  It was very hard.

So, out of 3 jobs I was offered, I accepted 1.  And it was even one that was on my list of limitations that they agreed to in our in person meeting.

I didn’t mention this to the director who fired me over the phone.  But after I mentioned that my lack of availability was because of my cancer treatment, suddenly there was another reason.  “And also, you got some luke warm feedback.”

Well, that’s different!  I take my work very seriously.  It’s my passion.  If a school or teacher is dissatisfied, I want to know about it!!!!

“Ok, well that’s serious.  Can you be more specific as to what the problem was?  I’m always trying to improve.”

“Oh, no.  Nothing specific.  Just luke warm feedback.”

Meaning…bullshit!!!!!  Utter bullshit!

  1. I have never, ever been reprimanded by this or any other organization for poor work or dissatisfied teachers.
  2. Aside from notes for improvement and constructive criticism, I have only gotten good reviews in the past.
  3. They didn’t provide any proof of these comments.  I don’t know if they exist.
  4. They have never expressed any dissatisfaction with my work of any sort in the past.  No discussions, no warnings, no probations…nothing.  This “letting go” or firing was the first I have heard of it.

But let’s say, for argument’s sake, I did in fact get some luke warm feedback about my facilitation.  I would then expect, especially giving my stellar work history, that they might come to me and say, “You know, we got some not great feedback about your work at so and so school.  I know it was a really hard year for you.  What were your impressions of how things went?  Do you think you could have done better?”

The answer would have been, yes.  I could have done better at every job I had last year if I didn’t have a body part amputated, followed by 6 months of being constantly poisoned and then being radiated!  Those things got in the way of job performance just a little bit, in my opinion.  I wasn’t at 100%.  But here’s the thing.  I still got glowing feedback from everyone else I worked with.  I have been asked back to several schools that I worked with last year.  One organization has even given me a promotion based on my work in the past year.  So, based on all of this, I think the guy who fired me is just trying to cover his ass and not get sued.  I think I was discriminated against.

So, what do I want?

I know what I don’t want.  I don’t want my job back.  I work for so many amazing people who continue to support and love me through all of this.  Because treatment is not over.  Not even close.  I need to be surrounded by good people.  I’ve had enough poison in my life.

I also don’t want to sue.  Based on the laws that exist in this country, I believe I could and I might even win a suit (based on conversations I’ve had with advocates and lawyers) but that would take time.  A lot of time.  I just want to get on with my life.

I do want them to understand that they have done something wrong and have broken the law.  I think it is important for them to be educated on disability rights in this country and what is considered a reasonable accommodation and what is excessive so it doesn’t happen to someone else.

I am not angry at them.  Well, I was angry.  Really, really angry.  But I realized that part of this happened due to a lack of education.  Unless you have gone through cancer yourself, even if you are a caregiver or close to someone who has gone through it, there is no way you can know what cancer feels like.  You can’t understand that there is no word in the English language for the kind of fatigue you experience from chemo.  You can’t fathom the emotional toll it takes to fight every day.  I don’t want anyone to go through this and be educated by personal experience.  I wouldn’t wish it on anyone.

Where the fault does lie is in their lack of empathy.  This organization in particular prides itself of the work they do with children with special needs.  At trainings, we often discussed how we can use our art to teach understanding, compassion and empathy to our participants, especially those on the autism spectrum.  And while teaching it through our art, we should practice understanding, compassion and empathy to children of all abilities.  That is their niche, their specialty, their mission.  But when it comes to their own staff, to someone who is gravely ill and is in need of help, compassion falls short.  In fact, it’s cut off completely.  It makes me question what their real motivation is for doing this work?  When they can’t practice what they constantly preach!  Who are they serving, really?  Who are they really in it for?

What I’m doing about it.

I’m filing complaints.  They have broken the law.  They are in violation of the Americans With Disabilities Act (ADA), and NY State Human Rights Laws, just to name a few.

If you feel you have been unfairly treated at your workplace because of cancer, you can file a complaint with U.S. Equal Employment Opportunity Commission by going to one of their offices or writing a letter.  You can get help from advocates at Livestrong if you don’t know what to do or need advice.

Have you ever been discriminated against because of a disability or cancer?  How did you handle it?


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Mommy Mondays: Milestones

*Warning!  There are way too many pictures of Oliver in this post because I’m one proud mama!!

When you are a young mother (or mother/parent/grandparent in general) and you are diagnosed with cancer, your first thoughts go to your child.  I know that when I heard the words, “You have cancer,” I thought I might be dying.  I immediately started wondering which of Oliver’s milestones cancer would let me see and which it would take away; his first day of Kindergarten, his first kiss, high school graduation, college graduation, marriage, his first child?  A little over a year ago, not knowing what cancer had in store for me, I wondered if I would make it to his first milestone.

Last week, I made it to his first one.  Oliver attended his first day of preschool.  We were so excited about this because he has never been in any kind of school or daycare before.  We had considered putting him in one last year but because of cancer, we couldn’t afford to do it and we were afraid of the germs he would bring home that would compromise my already fragile immune system.

We have been building up this day for a long time; talking about it, visiting the school, letting him pick his lunch box, reading books to him, taking a practice bus trip to the school…  Many conversations and stories have been leading up to this day.

The night before, we read him a book that we love, Rosie Goes To Preschool by Karen Katz.  It’s a wonderful story told simply so that little brains can understand.  Oliver connected to it the first time we read it and in anticipation of his first day of school, we read it together.

IMG_3303

Oliver is pointing out all of the toys and games the children are playing at the preschool and talking about what he’ll do the next day.

IMG_3304

Oliver showing me how he’s going to nap at preschool, just like the kids in the book.

When he went to bed, he started having second thoughts.  “I don’t want to go to preschool!  I don’t want to go to preschool!”  He got the first day jitters.  But when he woke up in the morning, he looked at me and said, “I do want to go to preschool, mommy!  I do!!”  His face was bright and excited.  He was ready.

We made him his requested breakfast, a waffle (we put a little extra syrup on it) and a glass of milk.  He chose his outfit, a blue striped t-shirt and khakis.  We brushed his hair, packed his lunch (which he asked about a million times to make sure we didn’t forget) and we headed out to the bus.

It was raining so he had to wear his rain coat but it didn’t stop us from documenting the day.

I was inspired to make this sign by a friend who listed her daughter's favorite things. What a great idea to document the things they love with each new year!

I was inspired to make this sign by a friend who listed her daughter’s favorite things. What a great idea to document the things they love with each new year!

A funny smile.

A funny smile.

A silly face.

A silly face.

Then we went to our bus stop and waited for the bus, something Oliver was so excited about.  Which bus was going to come first?  He kept looking and running.  Finally, our bus came and we were on our way to school.

DSCN2533 DSCN2530 DSCN2529DSCN2535DSCN2536DSCN2539DSCN2544We got to the school just 15 minutes later.  Oliver was excited to see the cat that lives next to the school.  So excited, in fact, he sat down in a puddle to give it a kiss through the glass.  Fantastic!

DSCN2545 DSCN2546Then we got into the school, signed him in, showed him his cubby and where his water bottle and lunch box would be kept.  Then he turned to us and said, “Bye, Mommy Daddy!  You can go to work now!”  And off he went.  The teachers told him to give us a kiss and hug goodbye and he did.

DSCN2549Of course, I cried like a baby.  My little boy was fine and I was the one in tears.  But isn’t that how it’s supposed to be?  Part of me was crying because this all happens so fast.  My baby is growing up.  But the other part of me was crying because I made it!  I made it to milestone #1.  And let me tell you something.  I like it.  I like it a lot.  I plan on being here for all of the milestones to come, from kindergarten to grandchildren.  I’m not going anywhere.

Do you hear that, cancer?

DSCN2551


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Better Luck Next Time

If you couldn’t already tell from previous blog posts, I like to be in control.  Leaving things up to fate is not really my style, although I try it once in a while.  Mostly, I like to make sure I’m taking the steps necessary to ensure I can achieve the outcome I desire.  That’s one of the reasons cancer was so hard for me.  I controlled very little.  I put my fate in the hands of my doctors and nurses and the only control I had was to listen to them or not.  Obey or not.  Keep smiling or not.

So, when I was told about a study that NYU was doing around healthy eating to prevent cancer recurrence, I was interested.  Very interested.  Here was something tangible I could do to possibly decrease my chances for getting cancer again, improve my lifestyle, try out new yummy recipes and maybe shed a few pounds in the process.  The study was not only free, there would be a chef working with us and we would get to eat while we were there.  Sweet!  AND…there would also be some modest compensation which I would use to buy myself something pretty.  I signed up for the study and was randomly placed in a section that would be meeting in the summer.  That worked out perfectly for me and my schedule.

The meetings started in late July on a Wednesday evening.  I don’t know why I was shocked by this but I was by far the youngest person in the room.  This is not a problem for me but it was weird being the only young breast cancer survivor.  On the first day we talked about healthy fruits and vegetables.  I should have known this was going to be a bad experience when the nutritionist asked us to go around the room, give our name and favorite healthy food and most of the people couldn’t think of one.  Really.  Most people passed, scoffing at the idea of a “favorite” healthy food as if the idea was too ridiculous to answer.  You couldn’t stop me from making my list.  Lentils, zucchini, tomatoes, avocado, kale, salmon, quinoa, black beans, carrots, mango….I could go on and on.  They even asked questions like,

Which food has the most healthy nutrients?

A. Potato Chips

B. Apple

C. Sausage

D. Crackers

These weren’t the exact food choices in the question but the ones they listed were just as obvious and stupid.  But still, it was just the first day.  I could forgive a boring and overly simplistic first day for the sake of going over the basics which included….drum roll please….how to ROAST VEGETABLES WITH OLIVE OIL!!!!!!!!!!!!!   Oooooooooo!  Fancy!!!!!  (note my sarcasm here)

The second session was about portion sizes and how to eat a variety of foods for a maximum healthy punch.  Lots of color and texture.  Variety.  Whole wheat pasta is better than white pasta.  A plate with a hamburger and french fries is not as nutritious as lean chicken with roasted veggies and brown rice.  SHUT. THE. FRONT. DOOR!!!!!!  Then the chef started to cook and one of the things she made was quinoa.

“What is quinoa,” one of the ladies asked?  “Yes, what is quinoa?”  “I’ve never heard of quinoa”  And on and on.  I think my jaw hit the floor.  Most of these women had never eaten, never heard of quinoa!!!!  Where have they been?  We don’t live in some rural town that has limited access to a variety of foods (don’t get angry rural town people!  I know you know what quinoa is, I’m just saying this for effect.).  We live in NYC!!!  Even the corner bodegas sell quinoa!!!  Who are you people?

I left the session frustrated, having learned not heck of a lot again.  When were they going to get to the part that pertained to me?  When were we going to start creating a bunch of recipes that we could  use when we got home?

The third week they had a psychologist and two physical therapists.  The goal was to get us to see that we really don’t move very much and that maintaining an active lifestyle is conducive to healthy living.  They made us take a quiz where we could score anywhere from a 5 to 15 (you couldn’t score below 5) and it measured how active we are in our daily lives.  It asked if we take the stairs, have an active job, walk to the store, etc… I scored a 14.  They started telling us that instead of getting our milk delivered, we should walk to the store.  Take the stairs for two flights instead of the elevator.  Walk two to three miles a day.  If we do these things and add in exercise, we will lower our chance of cancer recurrence.

Cue hand raised high in the sky.

“What role does genetics play in this?”

“It can’t really help if you are genetically predisposed.”

They kept talking more.  Cue hand up again.

“Well, what if you do these things already?  What if you have been doing them for years?  What then?  You’re telling me to keep doing what I’m doing!  But here’s the thing.  I got cancer anyway!  I’ve been walking to the store, taking the stairs, roasting my vegetables, eating a balanced diet.  I’m far from perfect but I do all these things.  So, what am I supposed to do NOW?  Why did I get cancer if I’ve been doing everything you’re saying to do to prevent it from coming back?  And do I keep doing what I’ve been doing?  What are you saying?  Better luck next time?”

And I started to cry.  I was so angry.  Furious, in fact.  That they had the nerve to put me in this room for three weeks just to tell me to keep on keepin’ on.  That I’m doing great.  But the thing is, I’m not.  I got cancer.  No amount of broccoli in the world was going to change that.  No amount of stairs, push-ups or quinoa.  I don’t know why I got cancer.  I just did.  Because life sucks sometimes.

But here’s the thing.  I like to be in control.  I want to make sure this never happens to me again.  So I put a lot of hope into this study and I was let down.  The other women in my group assured me that they were learning a great deal.  I believe them.

In education, we talk a lot about differentiation.  We teach in classes with students of all levels and abilities.  As educators, we are expected to teach in a way that is inclusive of each student, from those who are the most in need of guidance to those who need to be challenged more and everyone in between.  In this class, this study, there was no differentiation.  They taught to the lowest level.  There was nothing for me.  So I left.  I walked out, crying, but I didn’t turn back.

It’s a shame, really.  To leave a place realizing, once again, I have no control.

The message was loud and clear.  Better luck next time.


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One Year Mastectaversary

I know I said that I wasn’t going to post while on my staycation but I realized that one year ago today I had my mastectomy.  Crazy!  Life hasn’t been the same since.  I miss my old body and one year later I still haven’t gotten used to the new me.  This is a really slow process.

Here are some old posts about my mastectomy.

About a week before my mastectomy, I threw myself a bye-bye boobie party.  It was great because all the people who love and support me gathered to lift me up.

Dealing with disbelief and a cancer diagnosis the night before my mastectomy.

My mastectomy story.

The strangest post-mastectomy side effect!

Enjoy the long weekend!!!!