My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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A Letter To Oliver On His Fourth Birthday

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Dear Oliver,

I think I start every year by telling you that you are the light of my life.  This year is no different.  It’s amazing to me that I can be just as in awe of you, if not more so, as the day you were born. I feel like you are the same incredible little boy that you have always been, but now you are a year older.

This is the year where I feel like you have really become a little boy.  You have strong opinions and wants.  You speak with so much expression.  You are dramatic like me.  Your talents are starting to show.  I’m getting a glimpse of the person you are going to be.

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You still love to make people laugh.  You like to make up stories and words.  You like to dance around making funny sounds.  You like to call people silly names.  Your number one goal in life is to see people, especially me, laugh at your jokes.  And you truly are funny.  When we came home from parent teacher conferences this year, we said, “Your teacher said that you are doing a very good job at school,” to which you replied, “And they said that I am a funny guy?”  They did, in fact, say that.  They said that they whole class laughs at your jokes and that several of your friends said that you are the funniest person they know.

 

You continue to be one of the most gentle, kind hearted people I know.  You are always taking care of me.  After my surgery this year, you never left my side.  You would walk me to the bathroom so I wouldn’t have to walk alone.  “Walk slowly, mama.  Be careful.”  And you wouldn’t leave me until I was safe back in bed.  You always ask about my “swollen arm” and kiss it to make it better.  You are still trying to wrap your head around the fact that I will have this condition my whole life and that a kiss doesn’t make it all better.  But that doesn’t stop you from trying.  You are always talking about friends who have felt sad or angry during the day and how you have hugged them to make them feel better.  Your love is what this world needs.  I think when you grow up, your love and caring for others will be the thing that shapes who you are.  I think you are going to change the world!

This year you have become more adventurous.  You like roller coasters and other rides.  You like to run right into the waves at the ocean, even in your clothes in the cold weather.  You take risks that you have never taken before.  It’s awesome to watch you push your limits and discover that you can do things you never thought possible.  You are beginning to understand that taking risks can reap rewards.

You still are obsessed with trains.  You like other things like blocks, legos and puzzles but you are passionate about trains.  You love learning all about them, from old steam engines to modern bullet trains.  You can’t get enough!

You have learned so many new things this year.  A few of them are…to put on  your clothes and shoes by yourself, to poop in the toilet, to write your name, to begin to read and spell, to add and subtract, to put a puzzle together by yourself, to ask life’s deep questions (“Am I going to die?”  “Why am I here?”  “How was I born?”  “Why does night happen?”  “Why does the mood follow us?”), to use big words like, “frustrated,” and “deflated,” to gallop, to sing whole songs that aren’t nursery rhymes (“Let It Go”), to reenact parts of the musical Oliver, for which you are named, and to make yourself cry on cue.

You love to play with your trains, take train rides, go to the park and run around, ride on your scooter, play with your friends, play with babies, go to school, sing, make up songs and eat sweets.  Your favorite books are The Big Book of Trains, Insects, Snakes, Train Song, The Gingerbread Man, How Do Dinosaurs Say Happy Chanukah?, The Three Bears,  and so many more I can’t even remember them.  Your favorite foods are muffins, lollipops, pancakes, runny eggs, peas, corn, turkey burger, tortellini, ham and cheese sandwiches, ramen (not the cheap, $1 kind but the real stuff), grilled cheese, mac and cheese, ice cream, bananas, grapes and blueberries.  You love to bake with daddy.  You are starting to love the arts; singing, dancing and acting.

I am proud of you every single day.  There isn’t a moment that goes by where I don’t realize how lucky I am to have landed a son like you.  You are my everything.  I love you to the moon and back, the stars and back, the planets and back and the galaxies and back.

Happy 4th birthday!

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The Never Enough Doctor

Two days ago I went to see my physiatrist.  He is the doctor who monitors my lymphedema.  When I first went to see him when I developed lymphedema, I liked him a lot.  I liked how he took a whole body and whole mind approach to my care.  He’s the one who helped me start therapy when he could see my distress and depression.  He made it happen.  He talked about helping me get a healthier lifestyle to help with cancer prevention.  But the last few times I saw him, I felt like he had an unrealistic view of my life and how I can fit lymphedema care and a healthy lifestyle into my every day.

To my young or youngish survivor friends, I don’t know if this happens to you as well but I have found that throughout my cancer journey there has been a lack of understanding of what it’s like to have cancer and be a working mother.  I know that the majority of patients that are seen are in their 50s, 60s, 70s and older.  50s and 60s is not old in my mind but these women are often at a different point in their lives.  They don’t (usually) have very young children.  They are not (always) building their careers.  To raise a small child and still try to define myself professionally and creatively while having cancer and lymphedema has been my greatest challenge.  I succeed sometimes but feel that I fail a lot.  That’s because I have way too many priorities.  I’ve written about this before.  What do I prioritize?  My health?  My finances? My career?  My son?  My mental health?  My emotional health?  My relationships?  My free time to be me?  I’m often overwhelmed by these questions.

Nevertheless, because I have gained a considerable amount of weight in the last few months, I have chosen to put my health front and center.  I’m unhappy looking in the mirror and unhappy with the way I feel.  I wrote two blog posts ago that I’m having a lot of difficulty losing the weight despite exercising 4-6 times a week and eating a plant based diet (not vegetarian, not vegan just way more veggies and fruits).

The last time I saw the “never enough doctor,” I was told that I needed to exercise more.  I couldn’t figure out when to find the time, especially with the work schedule my  husband had at the time.  I was only weeks out from my DIEP Flap and feeling like hell physically and emotionally.  He told me to “call on my community” to help me get it done.  What he didn’t understand was that my community is also made up of working mothers who have very little (if any) free time.  This pissed me off.

With that being said, in recent months my husband and I have discussed the importance of my health and what sacrifices we could make to help get my health back on track.  This means that my husband is not running as much (he loves to run) so that I have time to work out.  He has also put on weight because he is not running as much as he did previously.  I am also rarely putting my son to bed at night.  When he was in preschool only 2 days a week and I spent more time with him, this wasn’t a big deal.  But now he is in summer camp 5 days a week and will be starting full day pre-k in the fall.  My time with him is getting less and less.  With having to exercise at night, I’m sacrificing some of that time.  But I’m doing it not so that I have more minutes with him but more years.

I’m also sacrificing some major sleep so I can go out, get my work done, do the dishes, pump my arm and wrap it at night.  It’s a lot!

I’m also now seeing a nutritionist.  She agreed that my eating habits are healthy and we are monitoring my progress.

I have to say, I think I’m doing a hell of a lot here.  But according to the “never enough” doctor, I’m…well…not doing enough.

“How long are you exercising,” he asked me?

“35-40 minutes, 4-6 times a week,” I said,

“What exercise are you doing?”

“I’m run/walking and when I can’t get out, I’m doing a kickboxing video.”

He stopped, turned to me, looked me in the eyes.  “You really need to do more.”

“More?  More than 4-6 times a week,” I asked?

“No, not more times a week.  You really need to do 60 minutes.”

What???!!!!????

“You need to do more land based activities. Are you exercising in the gym?”

“No, I run outside.  I go to the park.”

“You really need to join a gym so that you can monitor your heart rate.  It’s more disciplined that way.”

“But,” I said, “I’m having a hard enough time finding the time to do the exercise I’m doing.  Back and forth to a gym is 45-1 hour plus an hour of working out, not to mention waiting on line for a machine…we’re talking at least 2 hours 4-6 times a week!  When am I going to do that?”

“Well, you do what you want to do but, if you really want to lose weight, this is the way you are going to do it.”

Fucking Asshole!!!!!!!!!!!!!!!!!

So, I’m finally figuring out a way to get exercise into my life, which is what he asked me to do last time.  I’m pumping my arm every night.  I’m wrapping most nights.  “You’re not wrapping during the day as well?”  WTF!!!!!!??????!!!!!!!  But instead of trying to find ways to get more exercise into my life (a pedometer to watch my heart rate and this thing called youtube which, I’m sure, has a lot of videos on how to do more effective work outs at home or outside), he just said I need to do the thing I can’t feasibly find the time to do.

It’s not enough.  It’s never, ever, ever enough.

His message: You can’t have cancer and lymphedema and still have a life.

What I say: There has to be a balance.  I can’t do it all and I can’t live for my condition.  What kind of existence is that?

He said that he doesn’t need to see me anymore but I can come back if I ever need anything.  I don’t think I would go back anyway.  I need to surround myself with people who will help me live with lymphedema and the side effects of cancer treatment, not for it.

 


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Bits of Happiness #28, #29, #30, #31, #32

I’m super behind on my Bits of Happiness posts.  I have had wonderful things in my life that have brought me joy each week.  I’ve just been too busy with work and life.  So, I’m going to update a few things.  I’m sure I’m missing tons and tons.

#28

Tulips!!! Tulips are my favorite flower and they’re everywhere in Brooklyn  right now.  My son even knows them and loves to point them out whenever he sees them and drags me over to see it.  It’s so sweet.  What a magnificent flower!

#29

Cherry Blossoms!  We missed the Cherry Blossom Festival this year due to the crappy weather but Oliver and I got to visit them together the day before.  We don’t have too many great pictures because it was just the two of us but they were lovely.

#30

Beautiful Brooklyn Streets.  I love walking around my neighborhood and watching the flowers gently fall off the trees and the leaves start to bloom.

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#31

Exploring My City With Oliver!  I took Oliver to Battery Park for the first time since he was a little baby.  We had such a great time exploring the wonderful gardens, looking at all of the boats and the fire boat that was spewing red, white and blue water.  It was an overcast day but we had so much fun!

#32

Hidden Playgrounds!  In Battery Park, there’s a hidden playground between two buildings.  It’s called, Teardrop Playground.  It’s right by 22 River Terrace.  And it has the biggest slide ever!  It was magical.

 


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Bits Of Happiness #21

Today I had my post-op appointment with my plastic surgeon.  He said that I am doing really well.  While I need to be careful, I can slowly start getting back to normal life.  So what is the first thing I did?

I came home and crawled into my son’s toddler bed and snuggled him for the first time in over four weeks.   We did our bedtime rituals, we kissed each other, we talked about nothing in particular until his breathing got deep and his eyes got heavy.  I stayed longer than I should have.  But these days will be gone soon and I got a taste in these past few weeks of what it’s like for our nighttime snuggles to be gone.

I think the day when my baby becomes too big and doesn’t want me to hold him until he falls asleep will break my heart.  So, until then, I will crawl into that tiny toddler bed and hold him every night.  Because I can.


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Mommy Mondays (On Saturday Because the Plague Has Come)

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Plague in Rome. Italy, 17th century

Don’t you feel like when you are having difficulties in your life, you should receive a “Get Out Of Jail Free” card from all the other little shit that can go wrong?  Like, if you lost your job, you shouldn’t have to get into that fender bender.  If you get cancer, you shouldn’t have to stand on every subway ride and get harassed by the crazy man.  Well, I have felt that on several occasions.  This surgery, my DIEP Flap, has been no exception.  Healing has been tough with this surgery.  I haven’t had any complications or anything.  It’s just such a big surgery (I’ve been cut in half, for God’s sakes!), I didn’t believe my surgeon when he told me how long it would take to even start feeling better again.  I should have listened to the expert.  It’s been such a long road so far, that when this past week happened to me, I couldn’t believe it!  I didn’t deserve it!  It shouldn’t have happened!

The plague hit our home!!!!!!

It started about a week and a half ago.  My son had some suspicious crusts in his eyes.  His eyes weren’t really red or anything so I just kept a close eye on it.  Maybe too close?  Anyway, what I thought might be turning into pink eye for Oliver, seemed to resolve on it’s own within a day.  Phew!

Not so fast, unlucky one!!!  Within a few days, my left eye started getting goopy.  Really goopy.  Things that shouldn’t be coming out of your eye in colors I have never seen, were coming out of my eye.  I had a bad feeling.  The next morning I woke up and my eye was completely swollen shut.  FUCK!!!!  I went to urgent care and the doctor walked in, took one look at me and said, “Oh, yeah.  I see it.”  She did her due diligence but was basically telling the nurse the prescription I needed, simultaneously.

“This is the price of having a toddler who goes to preschool,” I thought to myself.  I also thought to myself, “It could be much worse.  I could be puking.  Now that would be awful.”

It seems like the universe reads minds or something.  This past weekend, Oliver and I were staying with my parents so that they could help care for him. (To add to the list of things that are happening, Ken has a new job with new hours and new days off.)  Everything was going well.  Oliver was in a great mood.  When it was time for bed, suddenly he started saying that his belly and feet hurt.  “Nice delay tactic, kid,” I thought!  My father was snuggling him in bed and suddenly….vomit was everywhere!  I mean, everywhere!

Oh, shit!  Oh, fucking shit!!!!!!!!!  It was me, my mother and father and we could barely keep up with all of the puke!  Part of me was really distraught because this was Oliver’s first stomach bug and I couldn’t go near him to comfort him.  We were all too nervous about what would happen if I got it, so it was universally decided that I should keep my distance.  Now, no one wants to be covered in this stuff but, I’m his mother.  I’ll be covered in anything if my baby needs me.  My baby needed me.  I couldn’t be there for him.  So I cried and barely slept that night.

The next morning, Oliver was fine.  Tired mostly with little appetite but his mood was good.  The worst seemed to be over and we all felt fine.  It seemed as if we all dodged a bullet.

Can you sense some foreshadowing here?  Well, you’d be right.  On Monday night, Ken was getting ready to go to the airport to pick up my mother-in-law who was coming to stay with us and help us out.  I was feeling a little off that day but it felt like a sour stomach or gas, and I didn’t think much about it.  But, as Ken was getting ready to leave, it suddenly started getting worse.  “Should I go,” he asked?  “Yes, go.  I’ll be fine.  It’s just bad gas,” I said.  He put on his shoes.  He came back to me and told me I was leaving.  I pushed him out of the way and threw up.  I had the bug.  “I guess I’m not going anywhere,” he asked?  I was shaking.

Now, if you have never thrown up after your abdomen has been cut in two…well…all I can say is…it is a memorable experience.  I was shaking from the pain, the sickness, I was cold and feverish and achy.  I was already achy but this on top of it!!!  It was a maddening, awful feeling.  It was the last time I threw up that night but it was enough.  I couldn’t sleep all night. I couldn’t stop shaking.  It was terrible.

Meanwhile, while all of this was going on, Oliver chose this exact moment to start acting like a little asshole. (Yes, 3 year olds can be little assholes.  I love him, even when he is an asshole, and he’s not often an asshole but that night, he was a little asshole.)  He was refusing to go to bed.  He was throwing temper tantrums.  He was in his room calling, “Daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, I need a tissue, daddy, daddy, daddy, daddy, daddy, daddy, I’m not tired, daddy, daddy, daddy, daddy, daddy, daddy, I have to poop, daddy, daddy, daddy,daddy, daddy, daddy, I have to tell you something, daddy, daddy, daddy, daddy, daddy, daddy, daddy, cover my feet, daddy, daddy, daddy….”  This went on until 10:30 pm.  Meanwhile, I was in our room, “Ken, I need some water.  Ken I’m going to throw up again.  Ken, I’m cold, I need a heating pad.  Ken, I’m shaking please hold me.  Ken, my pants are hurting, I need my soft pants from the laundry bag.”

Poor, Ken.  I heard him in between our two doors, Oliver’s and mine.  I heard him stop for a moment, silence and then, “Oh. My. God.”  He had two whiny babies on his hands.

Oh, because all of this isn’t enough.  Two hours after I threw up, I started to get pink eye in my other eye.  Really.  You can’t make this shit up.

The next morning, Ken had pink eye in both eyes.  That night, he started to come down with the bug.  The following night, my mother-in-law got it.  It just didn’t stop.

This whole ordeal seemed to set me back, as far as recovery goes, about 5 days or so.  I feel like I’ve been hit by a truck.  It was really frustrating because I didn’t deserve it.  No one deserves this.  What has been so hard is that, even though I’ve had this surgery and gotten so sick, I’ve still had this little man to take care of.  And people who where supposed to be caring for me, I’ve had to help take care of them.

It’s made me think and remember that being a mom his hard, even without cancer.  But just because you have cancer, doesn’t make all of those other things go away.  Your child still gets sick and can and will get you and your whole family sick with him.  It’s not fair.  It’s not right.  It just is.  There’s no “Get Out Of Jail Free” card when your a mom with cancer.  I knew that.  I did.  But shit, shouldn’t here be?

 

P.S.  Did I mention that I woke up this morning with laryngitis?


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Bits Of Happiness #18, #19 and #20 Rolled Into One

I have a lot to be happy about recently.  I’m on the other side of the surgery I’ve been dreading and am beginning to heal.  It’s not easy but each day is better.  But that’s not where the joy is.  Here are the three I couldn’t choose between so, I thought I’d list them all.  Why not, right?

#18

All of my drains are out.  The two drains in my breast came our very quickly.  The one in my right abdomen (which I nicknamed “Leaky”) came out a few days later.  The one in my left abdomen (which I nicknamed “Ouchy” because it felt like I was being stabbed with needles all day long) took much longer.  Two weeks to the day of my surgery, it finally came out.  Bye-bye drain!  I’ll never see you again!!!!

#19

Because the drain finally came out, I got to hold Oliver in my lap again.  We have been hugging, snuggling and kissing constantly for the last two days.  He’s missed his Mommy.  “Kiss me on my neck again, Mommy!”  Your wish is my command!!!!

#20

Oliver has been very curious about my scars.  If he asks, I show them to him.  If he wants to touch them, I let him feel them gently.  I have nothing to hide.  The other day he asked to look at the scar on my breast.  The scar is in the shape of a circle over the top of my breast.  When I showed it to him he gasped, opened his mouth wide with a smile and squealed “It’s an O!!!!  For Oliver!!!!!”  That’s right.  I have an O for Oliver on my breast.  Best. Scar. Ever!!!!!!!!!!


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The Best Thing I Can Hear From My Son

Tonight is the last night for a long time that I will be able to crawl into my son’s bed and cuddle him before he sleeps.  My reconstruction surgery is Friday morning and it will be a long time before I can get in and out of his little bed.  I stayed a little extra tonight.  As I was leaving, this is what he said.

Oliver:  Mommy, I need to tell you something.

Me:  What do you need to tell me?

Oliver:  Mommy, I love you.

Me:  I love you, too.

Oliver:  Mommy, you make me happy.

Me:  You make me happy, too.

 

My heart has melted.  I think we will be ok.