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!

Change in plans? Not sure? Maybe?

An update as to what’s going on for those that are wondering.

First I’m done with the hardest part of my treatment which was the A/C part of my treatment, Adriamycin and Cytoxan.  Adriamycin is super hard on the body — externally it can burn your skin so imagine what it’s doing internally!  Cytoxin has some annoying side effect (bad sinus pain and pressure) but at least it wasn’t as damaging.

Now I’m at my weekly Taxol treatment.  It’s supposed to be a lot easier than AC – and no dropped white blood cell counts. So far so good.  My legs feel a little heavy and I’m wound for sound from the steroids and sleepy from the Benadryl.  What a combination!

The first plan was that I’d take the Taxol for the next 12 weeks and then I’m D-O-N-E, but things haven’t been that simple for me.  Remember that my first diagnosis was DCIS with no chemo involved… *ahem*.  Well, now my Oncologist brought up the fact that no matter how many tests they ran on my tissue sample, it keeps coming up HER2 equivocal. (What’s Joanna talking about?)

In simple terms, when they test a tumor after surgery (or a biopsy pre-surgery) they test for three things:   ER, PR, and HER2.  Estrogen, Progesterone and HER2 Protein.  Depending on whether + or – for each of these depends on the chemo and the course of action.  The tests for ER and PR are pretty clear cut.  HER2 testing is relatively new and there are new tests and guidelines over the past few years.  They even approved a new chemo drug for HER2+ cancer last year, Perjeta.

My Her2 status means they really don’t know what to do; I fall into the “lucky” 5% of Breast Cancer patients.  For HER2+ cancer there’s a drug called Herceptin which was approved for use in 2005.  It’s NOT chemo.  It’s called targeted therapy and I’m amazed at how Scientists figured this one out.  If you’re curious how it works, this is a link to the video put out by the drug company.  Warning, big scientific words used 😉

My Oncologist isn’t comfortable with my status and so during her weekly meeting with the other Oncologists and Pathologists they brought up my case for discussion (makes me feel special).  The Pathologist decided to run more tests on what they removed from my lymph nodes.  If it’s negative, I’m done by July.  If it’s positive or still equivocal then I have 9 more months of going to the hospital every three weeks to get Herceptin.

The good thing about Herceptin is that it doesn’t cause the nasty side effects.  Hair grows back and things start returning back to normal.  The bad thing about Herceptin is that it can cause severe heart damage (in about 5% of patients) but it is reversible.  This is why they make patients have an echocardiogram every 3 months while on Herceptin.

Now I wait for the results of my second tests which should be available next week and now you know more than you ever thought you’d ever know about Breast Cancer treatment.  It’s not the scary bogey man drugs that people think it is.  And in cases like mine, curable when caught early and a quick course of treatment is taken.

There are a couple of things that make me sad thinking that this would extend through April of next year, maybe missing a trip to Puerto Rico, and having to have this port in for that long.  It looks like a little alien three fingered hand trying to push out through my skin (no, I will not post pics) and it’s uncomfortable.

Finally –as always, thanks everyone for your support!  It has helped immensely during this rollercoaster!