Pink Is Not My Color

Well, go figure that I’m wearing a pink sweater as I write this.  It’s chilly and rainy here in SC as Joaquin pumps some rain and  wind into our area.  My pink sweater is a Black Mountain Off Road Adventure Park sweater and has nothing to do with the “Pink Movement”.

This time last year was when I found out I had breast cancer.  Back then we thought it was just DCIS and had no idea what was in store for 2015 — surgery and chemo.  I learned not to get too comfortable with anything, you never know what can come at you at any time and you need to be able to accept what comes and work with it however you can.  I was barely aware of what awareness month this was until last year when I was among those affected.

For those of you under a rock that don’t know, October is Breast Cancer Awareness Month.  With it has come the slew of Pink Posts on social media and companies selling their products decked out in that ribbon happy pink.

Well, considering what I’ve been through this year, why don’t I like the pink campaign?  Like many of my BC sisters we realize how this disease has been commercialized and glossed over by corporations, well one in particular.

Though Susan G Koman has done some great things for breast cancer awareness, still over 20 million per year goes to “administrative expenses”, and 40% of the money raised goes towards “educational programs”.  Educate about what?  I have yet to see something from them regarding lifestyle changes that women need to make to reduce the risks of breast cancer.  The only educational programs I’ve seen have been pretty much advertising.

chi-limited-edition-pink-ribbon-hairdryer-278x278Look up products with the “pink ribbon” and its pretty funny: KFC Chicken (yes a food that you really shouldn’t be eating if you’re looking to reduce your risk of cancer),  pizza boxes, Mike’s Hard Pink Lemonade (???), and then the products such as pens, staplers, even a hair dryer.  Are you fucking kidding me, a hair dryer?!?!?!  What do most BC survivors have in common?  Oh that’s right, we’ve gone through chemo and have no hair!  Even Ulta’s cover this month for it’s catalog had the pink ribbon. This month’s catalog got a snicker from me and I tossed it in the recycling bin without even a glance (it had the pink ribbon on the cover along with Katie Holmes announcing their Gorgeous Hair Event for the month of October). And it goes on and on.


Komen owns the Pink Ribbon and anything associated with it, they even think they own the words “for the cure” and even “cure”.  Any charity that tries to raise funds using those words will get sued. Nice, huh?  Part of the donations to this charity go to lawsuits to stop other charities from raising funds.

That’s just part of my reasons.  Then there’s the fact that the whole pink ribbon campaign pretty much ignores stage IV and metastic cancer.  There’s the talk about the “Survivors” and almost no discussion about those that will never survive breast cancer.  They will live with it on drugs to slow down it’s progression, but never stop it.  Metastatic means that they will eventually die from the disease, they just don’t know when.  Someone can live years with metastatic cancer.  I know two women living with it now.  It’s not all pretty pink ribbons and hoo-rah-rah.  20 – 30% of women diagnosed with breast cancer will have a metastatic recurrence.  That’s a terrible cloud to have looming over you and something that the pink campaign ignores.  It takes away from the cheery picture of being a survivor.

If instead of spending so much money on awareness they’d spend more of that money funding research then many of us would have more respect for the organization.  Really, who doesn’t know about breast cancer and getting regular mammograms and doing self checks? They don’t need to advertise the disease.

All the pinking takes away from the attention that we should give to the other cancers.  More women die from Lung cancer every year than Breast Cancer.  More men and women die from lung cancer every year than all other cancers combined.  You have a 1 in  2 chance of developing cancer in your lifetime and a 1 in 4 chance of dying from it.  Sounds grim, but the reality is that most of it comes from living to an older age.

Others have different takes as to why they don’t like the pink ribbon campaign.  It does seem to have gotten out of hand.  Having gone through a year of crap from the disease makes you more aware of the ridiculous amount of pink products out there.

For those that want to donate to cancer research, I recommend the American Cancer Society (  Five years ago I signed up CPS-3 Study.  Hopefully with data gathered they can guide researchers into areas of focus and study.  That is truly searching for a cure.

On a different note, an update.  Next moth I’m up for surgery again. This time with my plastic surgeon.  It’s an outpatient procedure and hopefully I won’t need to take any real time off from work.  I’m looking forward to getting more back to a new normal. My hair is growing back and I went out to last Saturday hat-less and wig-less for the first time since I lost my hair :)  I’m feeling a lot better and my energy level is back up.   I’m looking forward to getting back into a routine.




Next Phase

It’s been over a month since I last posted.  It’s been a busy month, too.  I had my weekly treatments of Taxol, which were taxing (barump-bump!).  Though they weren’t as bad as the initial bi-weekly treatments, towards the end I was feeling the cumulative effects.  It doesn’t help that I was gaining weight at a rate I never have before.  I’m heavier now that I was when I was pregnant with William.  It’s depressing.  My feet are swollen and my thumbs and index fingers are still tingling from slight neuropathy.  My feet are starting to feel it as well.  Though from what I understand, some people have it so severe that their hands and feet feel like they’re cut with glass.  I’m nowhere near that.

The best piece of news:  I’m DONE with chemo!!!

I’m now on Herceptin every 3 weeks, which started last week, through April of next year.  I mentioned before, it’s not chemo, it’s a targeted treatment without the chemo side effects.  Last Thursday was my first treatment.  No pre-meds (which means no steroids!), and done in under two hours from beginning to end.  My next treatment is on my birthday (BOO!) and I have one that falls on Christmas Eve.

I feel like now it’s phase II — I’m not done with doctor’s and needles.  But I can start getting my body back.  I started Yoga and walking.  For those that know me well you must have snickered reading that I started doing Yoga.  I’m the most not flexible and lack of balance person you may ever meet.  I’ve fallen on my butt in class a few times but I’m determined.  I’m also so relaxed after class that I want to see how I can add a few more Yoga sessions on my own.  Suggestions for videos on YouTube appreciated!

Now that I’m done with chemo, I can also start visiting my plastic surgeon again and hopefully have reconstruction in October.  This is another reason I’m determined to lose at least half the weight I’ve gained by then.  I need to start looking a little more like the old me so that the surgeon knows how to balance things out properly 😉

I’m still a work in progress both mentally and physically, but now I can take what I’ve learned and keep the momentum going as I start feeling better.  It’s going to be a lifestyle change.  Focused towards the end goal and the continuation of a healthier me!  I’m even considering trying to acquire a taste for seltzer so I can kick my soda habit…

We’ll see!

PS: Hair is growing back.  It’s a baby fuzz that’s much grayer than before.  No eyebrows yet, but my lashes are trying to poke through!

And a huge thanks to my sister from another mother :)  Miss you!  I know you’re always there for me in mind and spirit.


The person we know the least

I’ve had a lot on my mind the past few weeks.  Of course the crap sandwich with chemo, but also all the positives.  Wil finishing Kindergarten, moving on to the easier chemo and not feeling as bad anymore.  Enjoying summer and spending more time with friends and family.

All that has happened has made me reflect a lot on life.  Shit, being told you have cancer will probably do that to most people.  I realized that I could get all melancholy and boo-hoo “why me?”  I actually have a Garfield doll (thanks Bro!) that was given to me on my 15th Birthday that has that on his shirt.  Back then I guess it was one of my favorite phrases.  Garfield’s traveled with me for almost 28 years (shit really?  Wow!)  He’s seen me use that phrase as a way of complaint, to now using it in my mind in wonderment when I realize how good life has been to me.

Some people know my background, many may know bits and pieces but a lot don’t.  The longer Cliff’s notes version:  My mom was the oldest female of a large poor family in Puerto Rico.  She came to the states when she was 14 and started working at a bra factory in NYC and lived with her aunt and cousins. Eventually she met my dad.  I don’t have the full story of how they met and what happened.  At some point I do hope to start picking some memories from the primas’ brains (you hear me Hilda?  😉   ).

My brother was born while they lived in NYC, then they moved to Puerto Rico where I made my arrival.  Eventually my mom moved back to NYC (the Bronx) with my brother and me,  but without my dad.  I was three almost four.  They officially broke up.  I have some harsh memories from that time that no four year old should have to see which involve alcohol, stolen pocket bags, burning apartments and a blackout (1977).  But, that’s for another time.

We moved to Brooklyn where my mother started attending a Spanish speaking Evangelical Lutheran Church and  she reconnected with her oldest brother.  Life started looking a little better.  We were still on welfare and food stamps and we still couldn’t afford much.  I was the kid who wore her brother’s hand me down clothes, dresses from Woolworth’s and the store that sold clothes that had the “imperfections” (arm sleeves of different lengths and crooked hems).  I could barely afford going on school trips and had the bologna and cheese sandwich with a thermos of V8 for lunch during trips while other kids were rocking their amazing lunches or had money to go to McD’s.  There were no after school activities that we could afford, so I went to the library instead.  We couldn’t afford cable TV so we watched PBS.  When my friends from school had a party for their Cabbage Patch Dolls I brought my imitation one that was made at the factory that my mom worked at for $4.88 an hour.  Eventually she met my step-dad, they married and things got a little better, and then they chose to move us to Bed-Stuy, Brooklyn.

The summer between elementary school and JHS I was sent to Puerto Rico.  I didn’t know the reason why.  I was so excited to start the gifted program at my JHS with some of my elementary school friends that I’d known since Kindergarten.  Then when I got home I realized that we’d moved from Park Slope to Bed-Stuy and that I wasn’t going to the JHS where my friends were. I never got the chance to say good-bye to them.  I was sent to a school where I didn’t know anyone and into a regular classroom where most kids didn’t give a crap about learning.  Then I found out we were no longer going to attend the same church.  The church we attended since I was four.  World flipped upside down twicw in one summer. At age 12 I hated my family and everything that was going on in my life.

I made it my goal to get into a HS where kids actually cared.  I ignored the teasing and bullying in my JHS and made it into Brooklyn Tech HS. Finally! I hung out with the group of misfits that didn’t fit anywhere else but we fit with each other.

Then, another world flipped moment that year.  This was as big and large as could ever be flipped for a 14 year old.  Mom had cancer.  She had been in the hospital for a couple of months and was back home.  I believe it was around Mother’s Day when she told us.

Though she had been in the hospital and the people that had been visiting were visibly upset, we were never told what was going on.  I knew it was bad; the catheter bag had blood.  Even a 14 year old can pick up on that.  But we were never told how bad until close to the end.  Again, one of those memories burned into my brain.  She pulled us aside into the dining room of our apartment.  She was sitting on the beat up old couch that we’d gotten from our old church (that was once a funeral home).  She told us she had cancer but not the prognosis.  She led us to believe that there was a cure and that she was going to go through chemo and radiation.  She died a month later from metastatic renal cancer that had spread to her lungs.  It was less than a week after my brother graduated from High School and two month’s before my 15th birthday.

My brother started the Marines in the fall and I had nowhere to live in NYC, so I was shipped off to Puerto Rico.  It was a place I barely knew to a school system I never attended.  Again world flipped.  Fortunately I had my cousin to be my counselor, best friend, sister, and partner in crime.  Without her, it would have been a much more difficult journey.

I decided to get out of dodge and applied to colleges in the states, and as I waited for a response from them, we got a call at 1 AM from the police barracks in town.  It was regarding a “Diogenese Milanes”.  I wondered what my Dad had gotten himself into, he lived in the Dominican Republic at that time.  Then they said, no, it was a Marine Sergeant and Captain that were there and needed to see us in person and it was regarrding my brother.  We were so country, we didn’t have a street address so they needed directions to the house which is why they called.  I felt faint.  Though my dad was alive, my brother was the closest family I had left.

Once they made it to the house they told me that  my brother had been in a car accident during Desert Storm. He had suffered head injuries. No other information was available and they told me that during a time of war news was slow to come by.  All week we called and were told no news is good news but finally a week later they told us he was in Germany and though hurt very badly he was stable.  A few months later he flew to Puerto Rico and visited for my High School Graduation.  He wore his dress blues at my graduation :)  All the girls were flipping over him.

The next few years were spent in New York (state), with a two year stint back in PR where I thought I’d never make it back to finish college — but somehow I did after a year of teaching in PR and a semester at the University of PR, and a gentle kick in the butt from my brother also helped (thanks, Tony!).  They were a crazy few years where my eyes were opened to things I’d never seen and where the naive little girl grew up.  I formed friendships with people that, even though they’re far will be a part of my life forever (in no particular order): Michy, Len, Thomasina, JoAnn, Rob, Miriam and of course Peter.  I’ve had friends later in life,  but these were the people that were around during a time where I was still trying to figure myself out and helped me see things that I wasn’t aware from different perspectives and views.  They also have allowed me to see the occasional glimpse of my true self.

Quick fly-over the early professional years, marriage and all that jazz since most people that know me now are pretty familiar with the more recent years.  Now we have the crap sandwich that we’re dealing with.

My past has shaped me to be who I am.  Writing all this, I think back to the one thing that kept me going was a growing positive attitude and confidence.  There were two situations in my life that have taught me that keeping secrets, especially big ones, are no way to live your life.  That’s why I’m pretty open about what’s going on.  There’s no reason to keep quiet.  All it does it shut people out of your life and make them wonder what is going on – and come to their own conclusions.  I’ve also learned to give in and let others help out.

We can’t control what we get, what diseases come about and what tragedies may enter our lives.  But, what we can control is our reaction to them, how we go about taking action because of what’s happened and our attitude towards it and those around us.  Most times, I’ve taken the I can do this attitude.  I managed college pretty much on my own.  There were many times I could have said, shit, this is hard, I guve up, but I didn’t.  I made sure to surround myself with positive people that helped me find solutions to my problems.

I also realized that I don’t know myself as well as I think sometimes.  There are days that I realize that something I just said or did was pretty mean and so I decide to make a better choice and have a better reaction next time.  Then there are times when I’ve thought that I wasn’t strong enough to handle something and I’ve been able to push through.

I’ve seen a lot of negativity lately.  People that get angry because not everyone agrees with their world view.  Those that think that everyone should think like them and follow what they believe or do.  The funny thing is, I’ve had the opportunity to meet so many different people from so many walks of life with so many different contradicting perspectives and beliefs—and they all think they’re right. We all do.  Because of this, I’ve come to the live and let live point of my life.  I now try to avoid negativity on public media – it has no point other than ruffling feathers just for the sake of reaffirming what we think with “likes” and “so true” comments.  Negativity won’t change people’s minds on anything except their opinion of you.

There’s already too much anger and hate out there.  No need to add more to it.  There’s no need to alienate people just for a bit of social media bravado.

I want to end with some positivity, Wil just came over tonight out of the blue to give me a hug and a huge kiss (on the lips of all places).  He’s not very affectionate so this is one that will go straight into moma’s heart for later reflection.

Quick Update – Still Equivocal

Just a quick update.

I’m on week 4 of my Taxol 12 week treatment and though I’m a little tired and cranky at times (sorry Peter), it’s much easier than the prior treatment.  I’ve even noticed  some light fuzz starting to grow on my head, though my eyebrows have decided to make an exit.  I miss my eyebrows more than I miss my hair!

Well, from the last time I posted, I was waiting for test results regarding my Her2 status.  They ran two tests and both came back equivocal, meaning not positive and not negative.  It’s very rare to have that happen and my doctor said that only about 5% of cases end up that way.  So, on the side of caution, they’ve added Herceptin to my regimen.  The general side effects of Herceptin are minimal.  They’ll just need to monitor my heart regularly to make sure that there’s no damage.

On a non-disease note, this is Wil’s last week of Kindergarten.  I’m doing one of these :O  This year seems like it’s gone at a snails pace but at the same time flew bye.  We’re now fully into boyhood!

June12014V2Feeling kind of gypsy like today.  At least in pics you can’t tell my eyebrows are gone!

Essays and Short Stories