3 Years Later

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.

2 Year Cancerversary

It was two years ago that I walked into a breast surgeon’s office to have a lump in my right breast checked out.  I remember telling myself “It’s just a blocked milk duct.  You just finished breastfeeding.  They’re going to tell you it’s nothing.  You’re going to be fine.”  Your mind tells you one thing.  Your soul tells you the truth and prepares you for what is coming.  I remember the nurse or the resident or whoever she was looking at my sonogram.  Her face didn’t change.  It didn’t budge.  Her pupils did.  I remember them narrowing with knowledge.  “I’m sure it’s just a blocked duct,” she said.  “But I’m going to get the doctor.”

The doctor came in and looked for himself.  He wasn’t quite as adept at hiding what he was seeing.  He was all business.  After a quick look, he told me that he’d like to do 4 biopsies.  One for each lump he saw and two for my lymph nodes.  WHAT?????!!!!!!?????  My lymph nodes?  Why they hell would he want to check those?  The lump is in my breast!  There was so much I was about to learn.

I remember crying hysterically as he did those biopsies.  I couldn’t believe what was happening.  My life was changing and there I was, being punctured over and over again.  Once it was over he asked, “Do you have to be anywhere?  Can you stay for a mammogram?”  He called in a favor downstairs, asking if I could be seen right away, even though it was the end of the day.  He let me know that he’d have the results of some of my biopsies the next day, “just in time to ruin your weekend.”  He asked me to come back and to make sure someone was watching my son.  He then walked me down to get my mammogram.

The next day in his office, he said, “Well, it is cancer” as if we all knew it already and it was no big thing.  But it was a big thing.  It was a huge thing.  That day, my life changed forever.

That was two years ago but it feels like yesterday.  Time has gone so quickly yet so slowly.  It’s hard to explain.

At my one year cancerversary last year, I was still reeling from the trauma I had experiences both mentally and physically.  In my post commemorating the date, I chose to thank all of the people who helped me get through what was the worst year of my life.  I am still grateful to all of those people.

But this year is the year where I have tried to get back to living my life.  I have accomplished so much.  This year, I finished my weekly Herceptin treatments.  They didn’t really cause any side effects but they kept me going to the hospital every three weeks.  It’s hard to move on when you are constantly going to these appointments in the hospital but it kept me close to Nina, my chemo nurse who I always love to see.

Even though my lymphedema progressed into a non-reversible stage, I advocated for the kind of care I wanted.  I left NYU Rusk for physical therapy and found the amazing Cynthia Shechter at Shechtercare who is helping me learn to manage this condition.  It reminded me to trust my instincts and to never settle for sub-par quality of care.

I went back to work full time.  It was exhausting.  I still experience harsh fatigue and my body was still weak.  I also still have some lingering chemo brain.  It’s not horrible but I still forget to do things and can’t remember people’s names.  But I love my work and am glad that I can continue to do what I love to do.

I’ve tried to be a great mother to Oliver.  Many would say I accomplished that.  Being my own worst critic, I can think of a million things I did wrong or about all of the projects I didn’t get to do with him or all the places I wanted to take him, but there was never time.  But, he’s also so bright, funny and caring.  He did so well in his first year in school and grew so much.  I think I should take even just a little bit of credit for that.

This year has also been extremely challenging.  I had my DIEP Flap surgery.  I was warned that it was difficult to recover from but I didn’t quite believe it.  I should have listened.  I’ve never experienced that kind of pain before in my life.  I also underestimated how long it would take for me to recover.  Even though I went back to work after 6 weeks, I still feel like my body is healing.  I’m also still not used to the scars and dissatisfied with the results.  I know that it is a work in progress but, no matter what the plastic surgeon does, I will still be unhappy with the massive scarring on my body.  I just can’t get past it.

Emotionally, moving past cancer has been hard.  The good news is that I don’t cry every day anymore.  Up until about six months ago, I cried every day since my diagnosis.  That’s a lot of crying.  A lot of trauma.  I still think about cancer every day, several times a day but the thoughts and emotions are no longer paralyzing.

Cancer has made me feel stuck in life.  Right before I was diagnosed, I was starting to think about the next steps in my career.  I had to put that on hold, of course.  Now, I have no idea what I want.  I’m trying to work through all of this with a therapist but I’m having trouble moving on.  I’m still mourning and I’m trying to understand what this new normal is.

They say that each year, dealing with the aftermath of cancer gets easier and easier.  That one day, I won’t think about it all the time.  It will be a distant memory.  At two years post diagnosis, I don’t find this to be true.  I have my life and I’m so grateful to be able to do many of the things I love but I’m having trouble moving on.  It’s all still so raw.  I’m still so bitter an angry.  It doesn’t feel good.

I’m going to try to keep busy all day tomorrow.  Hopefully I won’t think too much about the significance of tomorrow’s date.  My hope for myself is that I find as much joy as possible.  Maybe I should do something nice for myself.  Get a mani/pedi or take a long walk and window shop.  I don’t know.  But what I do know is that I need to start turning this frown upside down.  I need more joy.  More life.  Or why did I fight so hard?

 

Over The Hill and Through The Year

Dear 2015,

What a year it has been.  I knew it was going to be hard.  I knew I was going to have some challenges.  I also knew you were going to be filled with beauty and joy.  You were all of these things and more.

In 2015, I was still undergoing chemotherapy.  It knocked me out pretty hard and even gave me some severe anemia.  I managed to avoid more blood transfusions, like the one I got in 2014 by eating a lot of kale and liver (which does not taste great when on chemo, by the way).  But I kicked cancer’s ass and finished chemotherapy only 2 weeks behind schedule.  I celebrated by taking to the streets of NYC with a sign that said, “My Last Chemo!  Take A Picture With Me!”  And people did and shared their own stories about dealing with, caring for someone or losing someone to cancer.  It was a powerful moment for me.

Then I started radiation.  I had heard from many people that radiation was a piece of cake compared to chemotherapy.  In many ways, it was but it also kicked my ass.  The position I had to be in for the treatments were extremely painful.  And having to go five days a week nearly killed me.  I had my first official freak out at the cancer center before a radiation session because they never told me how late they were running and I needed to get home to Oliver. It was not my best moment but hey, sometimes you need to scream and cry to get things done (just not too often).

The hardest physical part of 2015 was developing lymphedema and cording (axillary web syndrome) in my right arm.  I had heard about it.  I asked every doctor and nurse about it but was told not to worry about it.  But I got it.  I started physical therapy and it only got worse.  This lead to some major anxiety and depression.

I learned that survivorship is hard and in many ways more difficult than having cancer.  Once I was done with treatment, I was left to deal with the trauma and aftermath of what had happened to me.  I felt like I was expected to move on and get on with life.  But cancer still had a tight grip on me.  I could still feel the side effects of treatment and this was not letting me move on.  I’m still working on this and imagine I will be for a quite a while longer.

The hardest emotional part of 2015 was losing friends to cancer.  I only met Christine once at a party but her spirit and love for her son made a huge impact on me.  She had gastric cancer and diagnosed terminal immediately.  I think about her often and give Oliver an extra squeeze when I do.  I also lost my good friend, Jessica.  Jessica had Ewings Sarcoma and while her life with cancer was difficult, she fought all the way with a thumbs up and a smile on her face.  Her positivity through cancer’s rough times was a model for me on how to “do cancer.”  I don’t think I could have gotten through my own experience with as much humor and grace if was not for her guidance.  I miss Jessica terribly.  Sometimes, when I can’t sleep at night, I still check to see if she’s on Facebook for a chat.  Then I remember.

Amidst all of the pain, fatigue, and desperation that cancer can bring, there was also so much joy.  In the spring, my hair started to grow back.  And even though it came back white, I was just happy to have hair on my head so that I wouldn’t need to wear a scarf in the warm weather.  I took a much needed family vacation to Martha’s Vineyard.  I needed that time away from cancer to relax, lay on a beach, eat lobster and snuggle with my family.  It was an incredible trip.  I celebrated my one year cancerversary on August 1.  I remember thinking that making it to the year mark would be an impossible task and I wasn’t sure how it would happen.  Somehow it did though.  The year had gone slowly but I was able to reflect on how strong I had become and how powerful.  I also celebrated my one year mastectaversary on September 5.

Of course, the best part of 2015 was my son, Oliver.  I’ve said it before and I’ll say it again, he is my everything and I am so proud to be his mommy.  This year, he started preschool for the first time and he loves it!  We took Oliver to see his first movie, The Good Dinosaur.  We filled our days with trains and train rides, even going as far as Peekskill to see Amtrak and a railroad crossing!  But, most importantly, I have been healed by his daily hugs.  

2016 will be here in a few short hours and with it will be coming new challenges and new joys.  I will be having my long awaited breast reconstruction, the DIEP Flap surgery.  I will be starting Zoladex, an ovarian suppressor, once I am healed from surgery.  I don’t know what side effects these will bring but I’m hoping for quick healing and no side effects.  I deserve a break.

This year, I’m hoping to partner with my amazing new physical therapist, Cynthia Shechter of Shechter Care (I’ll be introducing her to you on this blog soon) to change the ways doctors prevent and treat lymphedema pre and post mastectomy.  Cynthia has changed my life in so many ways and she fights for women with lymphedema every day.   I can’t wait for you all to meet her.  Hopefully, we can get things changed in this country around lymphedema and lymphedema education.

I don’t know what else I am hoping for in 2016.  I used to plan so much ahead but it’s hard to do when you are still dealing with cancer’s leftovers.  I hope to keep on living life joyfully and to gain new experiences.

Finally, I want to thank all of you who have been reading and supporting me and my blog.  I have so much respect for those of you who have been blogging long before me and who have paved the way for breast cancer advocacy and education.  For those who have just been diagnosed and have found my blog, I wish you a year of strength and healing.

Happy New Year to all of you!

Welcome, 2016!  Let’s kick some ass!!!

 

Love,

Carrie

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”