Five Hundred Twenty-Five Thousand Six Hundred Minutes

Five hundred twenty-five thousand
Six hundred minutes
Five hundred twenty-five thousand
Moments so dear
Five hundred twenty-five thousand
Six hundred minutes
How do you measure-measure a year?

-Rent, “Seasons of Love”

This is the second version of this post.  The first one I wrote was more angry, bitter and sad.  It recounted all of the challenges I’ve been through in the last year.  The memories of the pain, the loss and fear.  Isn’t that what cancer brings after all?  Isn’t that its purpose?

Then I remembered the promise I had made to myself a year ago, Saturday (August 1st will be one year since I heard, “you have cancer”).  That no matter what happened during this time, I would not let cancer win.  I would find the joy and laughter in every day.  No matter how grim the news, how foggy the brain, how painful the wounds, I would find a reason to smile.

With this in mind, I would like to measure my year, my five hundred twenty-five thousand six hundred minutes, not in pain and resentment but in love.

1. My husband, Ken.  There is no way I could have gotten through this year without him.  He has supported me in every way possible; with love, hugs, kisses, listening, being a shoulder to cry on, a shoulder to punch when I couldn’t bare my life.  He was a nurse, a medicine dispenser and he changed my drains and bandages.  When I couldn’t stand up for very long he took on the majority of the household duties, even after a long work day.  He was my second brain when chemo ate my memories and mental planner.  He came to doctor appointments, asked questions but mostly held my hand (and his breath) through all of the good and bad news.  He worries, I know that but he tries to not let me see.  He’s practical and a problem solver but I know, deep down, he’s scared.  But he stays even tempered for me.  He doesn’t have to.  I love you, Ken.  Thank you for taking our marriage vows, “the for better or for worse” part, seriously.

Photo courtesy of Julia Newman at Julia Newman Photography

2. My parents.  My mom and dad live close by so they have been there for everything; for appointments, for car service, to cook meals, to do laundry, to watch Oliver…everything!!!!  I’m not sure I could have handled the stress of having cancer, getting treatment and raising Oliver without them.  They have gone above and beyond and I’m so grateful to them.

3. My family.  My brother Jesse, my aunt Ava, my mother-in-law Mary, her sister Betty, my sister-in-law Jen and her new wife and my new sister-in-law Kelsey and extended family.  They have been there for moral support, childcare, prayers, good thoughts/vibes and more.  They were constantly thinking about me and my recovery, rooting for me all the way.

4. My aunt Vickie.  Vickie has been my hero throughout this whole process.  On the day I was diagnosed by the most awful doctor that has ever lived, she literally put me in her car and drove me to NYU to make sure I got the best care possible.  She has been coming with me to appointments ever since, advocating for me, taking notes, offering advice, asking questions, researching….  She calls me at least once a week to make sure I’m doing well.  I don’t know where I’d be without her support.  I am so lucky to have an Aunty Wickster.

Me with Vickie when I was pregnant with Oliver

 5. My best friends.  I have had all of my best friends since childhood.  It’s amazing how our relationships have stood the test of time.  Lee, Loren, Nicole, Inna, are like sisters to me.  I can tell them anything and rely on them for emotional support and a good laugh.  When they found out about my cancer, some of them cried with me.  Some of them kept a strong face in front of me.  I don’t know what they did in private.  But they were my rock and surrounded me during this time and gave me strength.  They are the best friends a girl can hope for.

Me and Lee when we were kids.

Inna, me, Nicole and Loren and Nicole’s wedding

6. My doctors and nurses.  Sometimes people call those who are undergoing cancer treatment, “warriors.”  I think the real warriors are those who are fighting for us all and my doctors and nurses fit into this category.  Dr. Guth, Dr. Jhaveri, Dr. Perez, Olivier, Heidi and Nina and all of the others I have met through scans and blood work.  They are all wonderful because while they don’t mince words, they are optimistic and knowledgeable.  They work hard to make sure they are doing the best they know how to for me while taking my life and lifestyle into consideration.  A special shout out goes to Nina, my chemo nurse, who is like a mother to me and Heidi, who has become a dear friend of mine.  When they talk about the good things that come because of cancer, I think they mean these people.

Nina

Dr. Jhaveri

7. Friends from along the way.  Maybe we went to college together, grad school, elementary school.  Or we met while I was acting and working in restaurants.  We were in a play together.  I taught in your classroom.  However we met, however we are connected, many of you have come out of the woodwork and have been incredibly kind to me.  With your words, prayers, positive vibes, personal stories, gifts…it has all touched my heart.  To know that I literally have hundreds of people rooting for me and wishing me well is a powerful thing.  I thank you all for what you have done for me and I am glad we can stay connected.

8. The new friends I have made.  I never wanted to be in the breast cancer club but I was given free entry and thrown through the door.  But inside were some of the most amazing women I have ever met.  Through your blogs our conversations and our chance meetings, you have inspired me, educated me, made me think, laugh, cry, scream.  I am grateful that you have welcomed me warmly into this club even though you’d rather not have any more members.

9. Oliver.  What can I say that I haven’t said so many times on this blog?  I am the luckiest mother in the world to have a little boy who is so loving, kind and intuitive.  Oliver kisses my boo-boos to make me feel better.  He has wiped my tears when I just couldn’t hold them back.  He snuggles me and makes nice to me so I will feel happy.  He makes funny jokes, sounds and faces so that I will laugh.  And I do.  I laugh all the time.  He has brought light into a dark time in my life.  There are no words for the love I feel for him.  There is no hug strong enough.  No kiss sweet enough.  I will just have to try and be the most incredible mother I can be to live up to and raise the kind of man I know he can be.  It is my pleasure and honor to fight to stay alive so that I can watch him grow.

Thank you, to all of the people who have been in my life this year.  You have helped me fight.  You have helped me mourn.  You have helped me celebrate.  You have helped me measure the last five hundred twenty-five thousand six hundred minutes in love!

Remember the love
(Oh, you got to, you got to remember the love)
Remember the love
(You know that life is a gift from up above)
Remember the love
(Share love, give love, spread love)
Measure in love
(Measure, measure your life in love)

Seasons of love
Seasons of love
(Measure your life, measure your life in love)

-Rent, “Seasons of Love”

Dr. Seuss Always Knows What To Say

Just a follow up to yesterday’s post.  Dr. Seuss has a way with words, doesn’t he?

“Mommy’s So Pretty!”

Tonight I spent dinner trying to convince Oliver that he was once tiny.  I was telling him a story about when he was about eight or nine months old and we went to a Mexican restaurant and we gave him some guacamole to eat.  We didn’t know that the restaurant had added in jalepeño peppers into the mix.  We gave Oliver a huge bite and the next thing we know, his hands slammed on the table, his eyes opened wide and he screamed.  Oops!  Parent fail!  This story upset him so I tried to tell him that this happened a long time ago when he was tiny.  “Oliver not tiny!  Oliver was not tiny!”

I think this is the moment right before the jalepeño hit him. Poor guy.

In order to convince him that he was in fact once a very small human, I got out my computer and we started to look at pictures from his first year.  He loves looking at photos of himself.  As we were scrolling through, we came upon a picture of me holding him when he was just a couple of weeks old.  My hair was long (well, long for me, at my shoulders).  Oliver looked at the picture and said, “Oooo, mommy, look at all that hair!!!”

The picture that made Oliver say, “Oooo, look at mommy’s hair!”

He pointed out my hair in this one, too.

Then we started to look at other pictures and he found one of just me taken just over a year ago.  He said, “Oooo, look!  Mommy’s so pretty!”  I was smiling, I had a cute hair cut and a glass of wine in front of me.  I was pretty.

This is the picture where Oliver told me that I was pretty.

I’ve never thought of myself as a great beauty.  There were parts of me that I loved but others that I wish were different.  But as I looked at some of those pictures of me with my chocolate brown hair with red highlights (and spritzes of grey), my skin imperfect but unaffected by chemotherapy, my thick eyebrows and my long eyelashes, I see myself differently.  I see someone who is pretty.  I see myself as Oliver sees me in those pictures.

I regret looking at myself and not seeing the beauty.  I miss so much of who I was before cancer came into the picture and one of the things I miss is my reflection.  I never thought that would be the case.  Who knew it would take such drastic measures for me to realize what I had and how good I had it?

The Greatest Role I’ll Ever Play

The tension in the air is palpable.  I can hear my own heart beat in my chest and feel the pulse in the tips of my fingers.  I’m barely breathing.  Or am I breathing too heavily?  I’m sitting there in my dress covered in silver rhinestones, or sometimes it’s a teal green ball gown or a red duchess satin hip hugging number.  I can feel the blood rushing out of my head as they read my name.  A chance.  A possibility.  And then it happens.  “And the Oscar (and Tony) go to…”  They open the envelope slowly.  They read to themselves.  Pause.  Look up at the camera.  I hear my name.  I’m in disbelief but know I deserve it but pretend to be in utter disbelief!  I walk up to the stage, crying, unable to speak.  The audience stands in applause.  I place my hand over my heart and bow.

I imagined it so many times growing up.  For a long time my dream was to be on the stage and screen.  But the life it took to even get a taste of success was not for me.  I still love to perform and feel that I do every day in my work as a teaching artist.  I still yearn to get on stage and hope to do it again soon but, I think I have played my greatest role to date; an “everything’s fine” cancer patient.

For much of my treatment, I felt like I was putting on an act.  I had to pretend all of the time, not just for myself, but for others.  At least I felt like I had to.  Here are all the roles I played in the last year and here is why I think I deserve a beautiful gold statue for that role.

Role: Carrie the Brave

Character Description:  In this role, the main protagonist, Carrie, who has breast cancer, must appear brave and steadfast to all the people who approach her.  In order to calm their fears and ease their sadness, she must calmly be able to look them in the eye, place a firm hand on their shoulder and reassuringly convince them that all will be well.  That cancer has messed with the wrong bitch.  She must do all of this although deep inside, she is as scared as she’s ever been in her life.  But to ease everyone else’s concerns is to ease her own.

Carrie the Energized

Character Description:  In this role, the main protagonist, Carrie, who has breast cancer must appear like she has boundless energy to all of her employers and coworkers.  She fears that she will lose work and financial security so, despite feeling like utter hell, she acts as if chemotherapy and radiation have no effect on her.  She plays this role brilliantly.

Carrie the Optimist

Character Description:  In this role, the main protagonist, Carrie, who has breast cancer, must go to all of her oncology appointments, chemotherapy sessions and all other doctor’s appointments with a smile on her face, jokes in her back pocket and a positive outlook on life.  She must do this so that doctors and nurses don’t see her falling apart and literally splitting at the seams and don’t send her to a psychiatrist which she doesn’t have any goddamn time for because she must also play Carrie the Energized (see above).

Carrie the Tough Bitch

Character Description:  In this role, the main protagonist, Carrie, who has breast cancer, must be unflinching in the face of a needle, a scalpel, a mammogram machine, a MRI machine.  She must pretend that she doesn’t fear all things medical, pretend that she doesn’t hate the smell of hospitals, detest the look of tubes and saline bags.  She must dig deep into her soul to not let the pain that these instruments deliver win.  She must be a total badass, a tough bitch.

In this last year, I feel like I’ve spent so much time lying or fooling others and myself.  But I played my roles well and one thing you learn in theater school is that acting is based on truth.  In each role, if I’m being honest with myself, I found the truth within myself in order to play my character well.  There have been times where I felt brave and truly believed that all could turn out alright for me in the end.  I have found the energy that the love for my work provides me.  I’m so lucky to do what I love and it has provided a daily escape from my reality.  I have been optimistic that everything I have endured would not only work but ensured that I would be able to see my son grow up and get married.  And I am a tough bitch.  Anyone who has to deal with illness, all of my breast cancer sisters (and brothers) who endure treatment every day are tough bitches.  Because we have to be.  We have no other choice.

I continue to play my roles every day because, even though my cancer is gone and treatment is pretty much over, this experience and the trauma that it has left me with continue.

Did you feel like you had to (or do) play a role?  What roles do you play?

15 Random Things About Me

Go away for a little while and you miss the party!!!!!  Last week Nancy from the amazing blog Nancy’s Point challenged us to write 15 facts about ourselves.  Lots of you took her up on her challenge and I can’t wait to read them all.  I did something similar in this post but I will try to come up with 15 new ones so you can learn a little bit about me.

1. I can’t whistle or snap my fingers.  I’ve tried.  I really have but it won’t work!!!!

2. My first real job was as a singing waitress here in NYC.  I haven’t sung in years so I’m rusty but I still love to belt a show tune in the shower.

3. I played the cello when I was young.  It’s still my favorite sound and I cry when I hear someone playing it.

4. I don’t like playing sports.  At all.  I think playing a game where a ball is flying at rapid speeds toward your head is just plain stupid and I won’t do it!

5. I’m a cheap date.  2 glasses of wine and I’m drunk.

6.  I make really good mashed potatoes.

7. If I won the lottery I would buy a house, travel the world, start my own global theatre organization, help my family out of debt and help fund a cure for breast cancer.

8. I can fold my tongue in three like a fan.

9. I love the movies.  I can spend the day going from movie to movie without leaving the theatre but I haven’t done it since having Oliver.

10. My background is Hungarian, Russian and Polish.  I’m a full fledged Eastern European Jew (although I practice atheism religiously).

11. When I was young, I made up a game for when I went to a museum.  I would imagine that I had unlimited amounts of money and that I could buy anything I wanted in the museum.  But this wealth came with a rule.  I could only buy one thing from each window or exhibit.  I’d have to make a choice.  In my mind I still play this game with myself.  Hours of entertainment, people!!!

12. I can’t watch movies with torture in it.  It makes me too upset and I get physically ill.

13. I like to think that I’m pretty sophisticated and yet I love a good fart joke.

14. My oldest friend has been my friend since birth.  Really.  She’s two years older than me so she’s been with me since my beginning.  My best friends are all ones that I’ve had since childhood.

15. I’m not afraid of heights but I’m afraid of falling.  I hate the feeling.

There you go.  That’s 15!  Anything else you want to know?

Just By Chance

I just happened upon this on my walk today. I thought it was kind of cool (which you can tell from my dorky pose).
In Minneapolis, Minnesota
  

Vote On My New Compression Sleeve

My insurance covers one more compression sleeve so I think I’m going to get one.  I have a plain, beige one right now.  It’s fine but it’s boring.  But there’s an incredible company that has found a way to turn a bad thing into something humorous and fun.  Lymphedivas makes compression sleeves with a design so that some of the attention you might get from your sleeve is positive.  It is also a great way to start a conversation about lymphedema and why it occurs.  Their mission is, “LympheDIVAs™ LLC is dedicated to creating medically correct and fashionable compression apparel for the savvy and stylish breast cancer survivor with lymphedema which will inspire her to feel beautiful, strong, and confident.”  I’m down with that.

So which one should I get.  I’m really torn.  Please vote.  I can’t promise that I’ll go with the winner but you will strongly influence my decision.  Also, keep in mind, I can’t get the gauntlet (the thing that goes over the wrist and hand), I’ll need to buy another plain glove, either beige or black.  That’s something to keep in mind when voting.

Thank you, Lymphediva’s for creating such an amazing product!!!!

Koi

Dragon Tattoo

Dragon Tattoo

Speakeasy

Speakeasy

Yogi

Yogi

Unprepared

I thought when it was over, it would be over.  That life would go back to normal and slowly I would forget about the nightmare I have lived for the last eleven months.  I didn’t realize that is not the way it goes.  No one told me that when you book a trip to Cancerland, you stay for a very long time.  No one told me that it keeps going.

I remember early on in treatment I learned about the term “late effects.”  I was mortified and frightened by the thought.  “There are lasting effects of chemo?  That can last for months, years, a lifetime?”  Ken and I asked about this at one of our appointments.  I don’t remember exactly what we were told but there was a “we’ll take it as it comes” approach.  And with that, we didn’t get much more information than what was on the internet.

In many ways I am lucky.  At only three months post chemo and two months post radiation, I’m feeling pretty good.  I have a lot of energy, my chemo brain is mostly gone (I still forget things here and there like names or details of things I need to do), I don’t have any heart problems or nerve damage.  I’m lucky.  I’m so, so lucky.

But I am still having problems with my arm.  The cording is persistent and will not go away.  New ones have formed in my hand and fingers.  The swelling is getting worse, too.  My physical therapist still has not diagnosed me with lymphedema but it hasn’t been ruled out either.  Cording (or Axillary Web Syndrome) can cause swelling and she said my cords are stubborn and moody.  They could be causing the swelling.  But after weeks without answers I’m getting nervous and anxious.  What if it is lymphedema?  What will my life be like?

I already have been given a compression sleeve and glove.  I hate it.  It’s ugly and uncomfortable.  Will I have to wear it the rest of my life?  What about lymphatic massage?  It’s time consuming.  Will I have to find time every day to do it?

Why did no one tell me about this?  I only found out about lymphedema through my own research.  It was never mentioned to me.  And when I asked about it, it wasn’t a major concern.  But I was concerned.  I was given a pamphlet to read.  That’s it.  And now here we are.

I have been caught off guard by the fact that, almost a year later, I am still having health problems.  I was not prepared for the fact that when I had cancer, I felt great and now that the cancer is gone I have medical issues, possibly life long ones.  I’ve been taking it really hard.  I cry every day.  I’m irritable and I take it out on the people closest to me.  Most of all, I’m scared.  If this is happening to me now, what’s next?  What’s in store for me?  Will I be able to keep standing up to the challenges that I will have to face?  I’m being broken down.  Beaten down.

I don’t want to do this anymore.  I want to leave Cancerland.

Photos From A Family Vacation

I needed this.  I really, really needed this.  One of the things I have felt guilty about throughout this whole cancer debacle is how it has stolen the time I got to spend with Oliver and my family.  Every time I thought I was going to have to do something fun, something would come up; a doctor’s appointment, physical therapy, a hospital stay…  It seemed to never end and all I wanted in the world was to take Oliver to the park or a museum.

When I imagined my vacation, I hoped for being on a Caribbean island where someone would bring me drinks in a coconut while I watched Oliver build sand castles.  Financially, that did not work out but my parents offered to split the cost of a house in Martha’s Vineyard with us.  I had never been but I’ve always heard great things.  And even though it wasn’t the vacation I imagined for myself, it was the best possible escape.  Here are some highlights from our trip.  There’s a lot of Oliver so be prepared!

Fresh lobster. This would be my last meal.

Oliver loved throwing rocks in the ocean.

My brother and parents

Convincing Oliver to come back to the car. Transitions were hard for him on this trip and he had a lot of meltdowns.

He loved finding bugs. I had to dig deep and pretend that I loved it too.

Rocking my bathing suit!

My dream house. I might start a gofundme to get it!

Bunnies everywhere!

Anniversary dinner at State Road. The president eats there!

Oliver and Uncle Jesse

Maple bacon doughnut. They say sugar feeds cancer. Oh, well!

We had a great time at The Farm Institute. It was a beautiful farm with a lot of hands on activities for Oliver.

A burger with the fresh eggs we got from the farm. One of the best meals we ate!

Oliver fell in love with blueberry pie and insisted I take pictures of him with it.

We got to bike ride around the island. It felt amazing to be active.

A seriously giant dandelion. Oliver was in heaven!!!

There was an alpaca farm. I never realized what beautiful animals they are.

We extended our trip and went to Boston. Oliver got his first balloon animal.

He didn’t quite know what to do with his red elephant.

Oliver learned a string instrument!

Lobster mac and cheese. Lucky guy!

We went bug hunting in our pjs!

Oliver loved the water

Diaper changing in the sand is no fun.

We set up Oliver’s train tracks outside (he can’t live without his train tracks).

The house we stayed in.

Look at that view!

See photos from our first 24 hours of vacation.  Remember my cancer-moon?