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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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.

IMG_1360

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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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.