My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Am I Lucky?

This week in the United States, the House pushed through a bill that would drastically reduce care for those with pre-existing conditions and substantially increase the cost of having a pre-existing condition, making it pretty much unaffordable.  A pre-existing condition can be anything from cancer to ADD, acne to autism, cerebral palsy to diabetes,  a c-section and possibly even sexual assault (although I’m now reading that this is more complicated than the bill saying that rape is a pre-existing condition, which it does not).

If this bill passes in the Senate and becomes law, it will be devastating for millions of families…millions upon millions upon millions.  There is literally no one I know, both in and out of the cancer world, who this will not negatively effect.

I want to be clear, the ACA is not perfect.  Not by a long shot.  It has a lot of problems.  While one of my friends who is on it say she is now paying less monthly for her family for better coverage, two others say that they are paying more monthly in co-pays and deductibles that they can’t even meet.  Why is this?  I’m not sure but it does seem unfair .  It needs fixing.

But it seems to me that signing the death certificate of so many who need life saving medical care is not the answer.  This bill is far from the answer.

After the new healthcare bill passed in the House, I said out loud, to myself, “Wow, I’m lucky I got cancer when I did.”  Then I suddenly stopped breathing for a moment, realizing the thought that I had just spoken out loud.  I was LUCKY to get cancer when I did?  Then, by the same token, I was lucky to have had a difficult birth experience and have a c-section when I did.

To say something like this is crazy.  Just crazy!  Because no one is lucky to get cancer…EVER!  But at the same token, I can’t help but wonder if I dodged a financial bullet.  Being on very good, employer based healthcare (something I do not take for granted and yes, I know how lucky I am) we’ve come out of the cancer experience in financial tact.  There are countless others who can not say the same thing.  I know that.  But under this new bill, if my cancer were to come back, which it can at any time,  my care could bankrupt my family.

The question I would face, and that so many others face now and will certainly face if this new bill goes through is, what is my life worth?  Is it worth bankrupting my family for a few more months?  Would people just give up the fight for the benefit of the future generations?

Why should anyone have to make this choice?  Isn’t every life precious?  Don’t we all deserve to be here for as long as possible?  Don’t we all deserve the same access to top-notch care?

This healthcare bill literally makes my stomach turn when I think about what it means for the cancer community and beyond.  And I’m more sickened that I sighed a breath of relief that I got sick when I did.  But, it’s true.  I’m lucky.  I got cancer when it seems that our government cared, even just a little bit, about whether I lived or died.

I can write a book about what I think are the long term implications on our society when we put a bill like this one into place.  But just imagine, who will be left if no one could afford life saving measures?  Only the richest few.  What would America be?  Who would we be?

Hmmm….I see a dystopian novel in my future.

1didyoudieofCOLCP


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Bits Of Happiness #11

Several months ago, I made it a goal to find joy in every day, despite the challenges cancer threw my way.  The challenges have not stopped.  More on that another time.  Today, I want to bring the joy in every day, however small, back to my blog.  Back to my life.  I am making a commitment to post a “Bits of Happiness” post each week for the next year.  What better week to start this than the week of Thanksgiving.  So, here it goes.

This weekend we had friends stay with us.  While we were walking through Central Park, we stumbled upon the most beautiful tree with blood red leaves.  Everyone who saw it had to stop, look and take a picture.  As we left, we crossed a small bridge over one of the small lakes in the park.  The sunset was gorgeous and the skyline was reflected in the water.  Two examples of life’s beauty only moments apart.

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In Memoriam: Jessica

Jessica Wilt, taken from her Facebook page.

Jessica Wilt, taken from her Facebook page.

Some people say that cancer is a gift.  I’ve never seen it that way.  I’ve seen it mostly as a curse.  But there are some gifts that have happened in my life because of cancer.  One of those gifts was, Jessica Wilt.

Jessica and I both work in arts education but we met through cancer.  She was diagnosed with a rare bone cancer, Ewings Sarcoma right at the time I discovered the lump in my breast.  Some of her friends had started a Crowdrise campaign to help Jessica with the costs of treatment and shared it on Facebook.  I know this sounds silly but I donated to her partially because I wanted to put out good karma into the universe.  Maybe if I did something nice for someone with cancer, that lump in my breast would turn out to be nothing.  It’s funny how the mind works to protect itself from the inevitable.

On August 1st, 2014, the day I was officially diagnosed with breast cancer, Jessica sent me a message thanking me for the donation.  I wrote back that I had just found out about my own cancer and asked if we could be friends and support each other through treatment.  That was the beginning of our friendship.

Jessica’s cancer was very different from mine and she was diagnosed just a month before me but I saw her as knowledgeable and experienced in the world of cancer.  I looked to her for guidance and example.  The first thing I noticed about Jessica was her ability to smile through the challenges and the pain.  The first picture I ever saw of her was in a hospital bed, smiling with her thumb up.  That thumb up would become her signature gesture that let cancer know it had a fight on it’s hands.  It was her warrior pose.

I think if it wasn’t for Jessica showing me, the world and cancer that you could fight with a sense of humor, with a smile and a thumbs up, my cancer experience would have been much different.  For example, when she was losing her hair due to chemo, she shared a video of it being shaved off.  It was because of her that I decided to turn the shaving of my own head into a ritual and share that very vulnerable moment on my blog for everyone to see.  When she got scan results that showed growth of her tumor, she would give that famous thumbs up and proclaim that she was not going to stop fighting.  When I was having a bad day due to treatment, I would remember this and find joy in my day.  I’m not sure I could have done this without her example.

One week ago, Jessica posted in her Facebook page that her tumor had spread to her spine and other parts of her body.  She had been in pain for quite some time and the scans finally showed why.  Her oncologists declared that her cancer was now terminal.  While this news was devastating, she was still giving that thumbs up and writing “I AM NOT GIVING UP HOPE.”  She never gave up hope.

Jessica died last night in the hospital surrounded by her family.   She endured cancer for 18 months with grace and courage.

I don’t know what a world without Jessica will be like.  But I know that it is a little bit smaller…tighter…strangely claustrophobic.  Or maybe the world is bigger, emptier with a space that can never be filled.  I’m not sure which.  Maybe it’s both.

Jessica was a dancer and believed in the power of the arts to be a movement for change.  She loved NYC and dreamed of coming back and reclaiming her life here.  She loved her family and friends fiercely.  Her community was everything to her.

Jessica, I will miss you so much.  I will miss our late night Facebook chats about cancer and life.  I will miss knowing that I had someone out there who gets it.  All of it.  I regret that I only met you in person once and that our friendship couldn’t have lasted longer.  Your spirit will always be a part of me.

Today, I had a hard day of scans.  It was awful, especially after learning you were gone.  But that’s ok.  I laid there and gave the machine a thumbs up.  And all will be well.

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That time we met in Washington Heights after we both finished our final chemo infusions. We ate, drank wine and thought about the future.

All that I know is I’m breathing.

All I can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing

Now.

-Ingrid Michaelson


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What To Get Someone Who Is Going Through Cancer Treatment: The Cold Weather Edition

There’s a chill in the air.  The leaves are changing from green to maroon, mustard, brown and florescent orange.  It’s time to start packing up those summer dresses and fill the closets with chunky sweaters and corduroy.  It’s seems so simple.  So easy.  But for someone going through cancer treatment, the change of the seasons can be stressful.  How do you deal with the cold when your hair is gone?  How do you stay cozy when every part of your body is in pain or discomfort?  How do you feel pretty when your body has been altered?  It’s hard to know how to help someone you care about when they are going through cancer treatment.  But there are ways you can show your support and love.

As always, you can provide support in the form of services.  Offer to do laundry or pay for laundry service.  Prepare a simple but nutritious meal or give a gift certificate to a favorite restaurant for home delivery.  You can give a gift card to fresh direct or instacart so that they can order groceries from their couch.  If the person you know has children, you can offer to take them out for the day for a fun excursion or offer childcare while they go to chemo or doctor’s appointments.  These are the gifts that are priceless.  But if you want to give/send something in the form of a gift, I think these items would do nicely.

  1.  Hats!!!  This Land’s End Fleece Hat looks soft and cozy.  I like the different colors and patterns they come in.  This hat has a sense of humor.  So does this and this.  It’s made of wool though so a good knit cap would work well underneath it.  I love this black beaded number for something a little more dressy.  I’m not sure how this would look but this rabbit fur hat must feel DIVINE!!!!  But sometimes cashmere will do the trick.

    Eugenia Kim hat from Saks Fifth Avenue

    Eugenia Kim hat from Saks Fifth Avenue

  2. Someone please get me (or someone else going through treatment) this cashmere robe.  This velvet number is so old Hollywood and would make me feel sexy no matter what I was going through.  Your favorite diva would love this faux fur robe for chemo treatments!  This colorful robe would bring life and joy to any hospital room!

    Sleepy Jones robe from Anthropologie

    Sleepy Jones robe from Anthropologie

  3. Chemo induced hot flashes are a bitch.  These pajamas can help a little bit.  You can get silk, or the fake kind.

    Silk pajamas from journelle.com

    Silk pajamas from journelle.com

  4. What a great, soft looking sweater.  The sleeves are great for those with lymphedema who might need to do bandaging after seeing the physical therapist.  This one too and the neckline is perfect for chemo days but it’s a real splurge.  Here’s a less expensive alternative.  This chunky sweater coat is perfect for snuggling up in on cold chemo days.  You can never go wrong with a cashmere hoodie!

    Chunky seater coat from ASOS.

    Chunky seater coat from ASOS.

  5. Not sure what to say to someone who has cancer?  Let these cards do the talking for you.  Emily McDowell makes the most humorous yet heartfelt empathy cards.  Maybe you just want to give cancer the middle finger or let them know you want to hold their hand even if you can’t be near with these Nicstudio cards.  This card really does say it all.  And I love this card for letting your loved one know that your support doesn’t end when chemo does.

    “Flip The Bird” card from TheNicStudio on etsy.

  6. Chemo can give you the worst taste in your mouth.  I bet these ginger lollipops would help with that and the nausea.  I love the packaging on these lemon candies.  But you could always go with the original Lemonheads.

    Lemon candies from Eataly.

    Lemon candies from Eataly.

  7. Some women, after losing their hair, like to get fancy with their jewelry, particularly earrings.  This pair has so many beautiful colors in it and it’s still simple and timeless.  These earrings are so eye catching.  For a woman who is not afraid to make a bold statement, these feather earrings are incredible.  These chandelier earrings are simple but beautiful and classic.  These hoop earrings are less gypsy and more rock and roll (and a major splurge) but these are way more affordable.

    Arman Jewelry Serpent Hoop Earrings sold at The Clay Pot.

    Arman Jewelry Serpent Hoop Earrings sold at The Clay Pot.

  8. I love everything in Knit Mystique’s etsy shop but these hand knit long socks are just amazing.  These shark slippers made me laugh and I think they would be great for hospital stays.

    Hand knit long socks from Knit Mistique

    Hand knit long socks from Knit Mistique

  9. I think temporary tattoos are so much fun!  These from the MOMA shop are whimsical.  These are a little more adult and badass.  These motivational tattoos gently remind you to remember some of the good things in your life.  These 3D butterfly tattoos are amazing.

    Motivational tattoo from Pop Shop UK

    Motivational tattoo from Pop Shop UK

  10. Keep hands toasty with these adorable convertible fox gloves.  The colors in these mittens will brighten any day.  These gorgeous, cashmere gloves are beautifully knit.

    Color Block Gloves from Anthropologie.

    Color Block Gloves from Anthropologie.

  11. Here are some ideas to keep that chemo brain active.  This coloring scratch and sketch book looks so awesome!  I really want one.  While this is not making things by hand, necessarily, my new obsession is designing shoes on Shoes of Prey. A gift card for this would be splendid!  This adult paint by numbers looks incredible!!!  What a great way to spend an infusion day!  I love the idea of terrarium kits!  This is just one but etsy.com has lots to choose from.
    Terrarium kit from Bird and Feather on etsy.com

    Terrarium kit from Bird and Feather on etsy.com

    These are just a few ideas.  There’s so much you can do for someone you care about who is going through cancer treatment.  I got so many generous gifts and words of love and I loved them all.  It is really the thought that counts.

What gifts did you get during cancer treatment that you loved?  What would you have liked as a gift to get you through the cold weather season?

z


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In Memoriam

Maya_Quote_4801Last night, I broke our nighttime ritual which can be dangerous with a toddler.  We usually have a bath, read books, sing a song and then go to bed.  But last night he asked if we could watch one of his favorite cartoons, Feast, before bed.  Normally that would be out of the question but I didn’t have it in me to say no.  So, we walked over to the couch, snuggled together and watched and laughed at all the parts we always laugh at.

Yesterday I found out that someone I met just one time at a party died three weeks ago.  We met at my neighbor’s son’s birthday party.  We both had cancer.  We saw each other from across the room, me with my head wrapped in a scarf, her with a simple hat on her head.  We knew instantly.  She was there with her husband and her two and a half year old son.  Her name was Christina.

We sat down and discussed what kind of cancer we had, where we were being treated, how we were handling chemo.  It was the first time I have ever felt guilty for not being sicker.  She had stage 4 gastric cancer.  She was dying.  The chemo was keeping her alive and she knew that when her body could no longer take the effects of treatment, the cancer would progress and she would die.  She thought about a year.  We were both in the middle of chemotherapy but she looked sicker to me, more tired and weaker.  It broke my heart.

Christina lit up the room that day.  She smiled and took pictures of everyone’s children on her phone, documenting every moment.  She laughed, told stories and mingled.  Christina loved her son.  She didn’t talk about it much but you could see it in her eyes when she looked at him.  He meant everything to her and she was fighting for every minute to be with him.

I often thought about Christina after we met, wondering if I should contact her, try to befriend her.  It never felt right.  I didn’t want to intrude on her time.  I felt that reaching out would be more about me.  About doing “the right thing.”

Then there is the other side of the coin.  I didn’t want to get too close to someone I knew that I was going to lose, who would make me face my mortality every time we spoke or met.

I don’t know which one is more selfish.  I don’t know which one is more selfless.  Is there ever a right answer when it comes to cancer?  Is there ever a right answer when it comes to loss?

My worst nightmare since being diagnosed with cancer has not been the treatment, the alteration of my body or missing out on life.  It has been the possibility of leaving Oliver without a mother.  What it must be like to lose a mother at such a young age, I can’t even fathom.

Alone at night, when I couldn’t sleep, I would imagine that, if I died, that he’d call out for me, look for me in rooms, wonder why I had abandoned him.  Wonder if I loved him and what he had done to deserve my leaving him.  Because children don’t always understand, not when they are so young.

Christina and her family lived and are living that nightmare.  Cancer has taken her away and that’s not ok.

I will honor Christina’s memory by giving Oliver extra kisses, snuggling for just one second more, putting my phone down more often, taking deeper breaths when he is acting out, rubbing my nose and cheeks in his curls every day and being grateful that I get to see him grow up, experience his daily changes.  I will never, ever take that for granted.

I was at a store recently and I met a woman who is a 6 year survivor of breast cancer.  She said to me that she is better because of cancer.  Today, the world is worse off because of it.  How can cancer be good when it brings pain, breaks up families, leaves children without their mommies?  This point of view, I will never understand.  Especially today.

Christina, I will never forget you.


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Six Month Cancerversary

It was six months ago this week that I was officially diagnosed with breast cancer and my life as I knew it changed forever.  On August 1st, when I heard those words, “Well, it is cancer” (asshole doctor!) I couldn’t imagine my life six months away.  Well, I could.  I imagined pain, puking, dark circles under my eyes, hospital stays, desperation, constant fear, emaciated body…  Some of these things have happened.  Some have not.  But somehow, I’ve managed them and come out the other side.  I have learned that my inner resolve is strong and that I can look pain, fear, regressions and disappointments in the face and rise above.  I have fallen.  I have fallen hard and I will fall again.  But as I try to imagine the next six months, (oh, it’s so hard for my mind to find a way to that point) I promise that I will keep standing and kick this cancer’s ass.  Because I get stronger every day.

stronger


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I’m Thankful For

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I decided that today I’d write about all of the things I’m thankful for.  At first, I was feeling pretty pessimistic and morose.  Why should I be thankful right now?  My body has betrayed me, I’m going through hell and being tortured, I’m missing out on life, social and work, as I’m going through treatment, I’m watching my family suffer as they watch me suffer…It all really sucks right now.  But if I look past all of these truths and really think about all of the things I still have and have gained in the process, I have a pretty hefty list of things to be thankful for.  I will do my best to list them all, but if I forget something big or someone who is so special to me, be patient.  It’s the chemo brain, I promise.  Does that excuse hold up in court?

  1. I am thankful for myself, that I have the strength, power and knowledge to know my body and to do a self breast exam.  If I didn’t do this, and my cancer was caught months or years from now, I think we’d be looking at a very different prognosis.
  2. I am thankful for myself again, for have the strength to face my fears of needles, blood, invasion of my body, surgery, sickness and the unknown in order to get myself the best treatment possible.
  3. I am thankful that I am learning to give up control and depend on others.  This is a biggie for me.
  4. I am thankful for my incredible medical team that cares for me and fights for me.  I don’t use the word team, lightly.  This is the staff at the NYU Cancer Center.  Dr. Guth, my breast surgeon, Dr. Jhevari, my oncologist, Heidi, Dr. Jhevari’s assistant, nurse practitioner and family friend who, I feel, treats me just a little more special because of our connection, Nina, who gives me my infusions for each chemo treatment and couldn’t be more warm, caring and wonderful while making sure to educate me on the process, no matter how many times it takes.  My medical team is growing, so I will thank my radiation oncologist, my genetic counselor and my plastic surgeon since they will all be a bigger part of my life very soon.
  5. I am thankful that, so far, my side effects have not been too terrible.  I’m especially thankful that I have not been vomiting every day and that I can function as normal most days as a result.
  6. I’m thankful for the anti-nausea medications that I’m given pre-chemo and all the pills I have in my arsenal that are protecting me should nausea start.  10 years ago, these did not exist and chemo meant spending your days over the toilet.
  7. I’m thankful for the technology that confirmed that I did not in fact have cancer in both breasts, which saved me from a double mastectomy and other unnecessary tests.
  8. I’m thankful for my Aunt Vickie who has been with me since the beginning of all of this and multiple appointments.  She has been my rock.  She made sure I got the best doctors, took notes at every appointment, asked great questions and advocated for me.  She calls me almost every day to make sure I am ok and helps me keep sane.
  9. I’m thankful for my friends who support me with love, meals and occasional babysitting.  They are not overbearing and give me my space to deal in the ways that I need to but also check in when they can, making sure I’m not sinking into an abyss.
  10. I’m thankful to my mom and dad who support me with love and information.  But mostly for being amazing grandparents and taking on a great deal of the rearing of Oliver.  I don’t know what we’d do without them here.  How would I get all of this done with a small child?  And for Oliver, it’s a treat to be with them all the time.  I think he gets extra cookies (don’t deny it Mom and Dad!!!!!)
  11. I’m thankful for Oliver who reminds me what discovery is and pure joy.  Every day I get to see and experience things from his point of view and it is so pure and untainted.  And while raising a toddler at the most challenging part of my life is one of the craziest experiences I’ve had, we mostly laugh, cuddle, kiss and learn together.  I think without him, I’d fall into the pits of despair.IMG_6109
  12. I’m thankful for my husband.  I don’t think he lets me know how hard this has all been on him.  He’s not good and sharing or showing that.  But I know he worries all the time.  He calls me like, 8 times a day.  But he cooks for me, gets me hydrating drinks, and has taken on most of the cleaning and laundry duties.  And he showers me with patience and love.  He’s the best husband ever.IMG_5805
  13. I’m thankful for the rest of my family, in-laws and extended family who write and call with encouraging words all of the time.  Support is the key to survival when going through a terrible illness.
  14. I’m thankful for the new friends I’ve made because we have cancer in common.  Jessica and Kimberly, thank you for showing me what bravery is.  I have learned so much by listening and learning from you.  I know that you also get angry, depressed and so much more but you have also taught me to embrace that.  I can’t wait until we can meet in person and when we can declare that we are cancer free.
  15. I’m thankful for Suzanne and Hair We Share for so generously donating my wonderful wig.  You are doing such an incredible service for those suffering from hair loss.  I can’t wait to see your organization grow and support you along the way.
  16. I’m thankful for The Livestrong Foundations and The Sher Institute for Fertility that helped me in the most loving and kind way harvest and freeze my eggs, especially at a time of fear, depression and confusion.  I could never have gotten through that portion of my treatment without you.  You are angels.
  17. I’m thankful that I still get to do the work I love and work for organizations that have been patient with me as I learn to live with this disease.
  18. I’m thankful for The West Wing on Netflix.the-west-wing-cast-708368
  19. I’m thankful for butternut squash soup and coconut water.
  20. I’m thankful for good under eye concealer.
  21. I’m thankful that I get to write this blog and, hopefully have a positive impact on others.

Happy Thanksgiving, everyone.  I know that as we sit down tonight, we are all experiencing something difficult; the loss of a loved one, financial difficulties, illnesses, defeats…it all counts.  But despite these things, we also have so many things to be thankful for.  Take time to really think of them.  It’s so meaningful.  Enjoy all of the treats today brings.norman rockwell