Hair Today, Gone Tomorrow

Last week my hair started falling out and it was a bit annoying.  We made the above video so my nephew could watch the process happen, as well as document for later in life.  I just wanted any children to be able to see it in progress so that any fear might dissipate when watching this silly video.  WARNING:  it is unedited, you will hear me and Matt admonishing our children.  We are a real family, perfectly imperfect and we do raise our voices. ;o)

That said, after I wore this short hair for one day, it still was falling out and bothering me even more.  Short hairs in my eyes, down my neck, in my clothes - itchy tickly and a pain in the tukus.....so here is the final result.  I haven't been wearing hats, wigs or scarves but just my bald head really (unless my head is cold, I throw on a beanie ;o)

broken open

sooo, chemo happened.  The actual experience itself wasn't so bad.  Sitting around with friends in a private room, laughing and having Five Guys bacon cheeseburger for lunch....just another Friday really. The days that followed are a bit of a blur.  I was (am still) loopy, forgetful, zoned out, silly.  Did you ever do mushrooms at UMass Amherst and then walk around campus on a sensory expedition with your friends, feeling like every happening was majestic, intense and surreal?  No me neither, because drugs are bad kids.  But if I did, that's sort of what it felt like going through my weekend days after chemo, and the Monday that followed.  I was on major drugs, and it felt like it.  But still able to eat some, getting in at least 2 meals and nibbling on things here and there.  From what I imagined the aftermath of chemo to be, I would gladly take this  hallucinogenic ride instead.  I was keeping on top of my meds, and slowly things were happening that affected my mouth, taste, head, skin, belly, bowels, body temp, mind, emotions, sleep etc....but they were happening in ways that I could kind of deal with.

Oh how I wish I could write The End.  'Twould be inaccurate to say the least. Tuesday greeted me with symptoms going all crazy Hulk on me, and ended with me getting my mom on a flight for next week.  Not only was the rest of the week difficult on me, but it was hard for all of us.  The kids were feeling my absence, Matt was working full time and getting up making breakfast, getting kids ready and coming home taking care of them until bedtime, getting them into bed and cleaning up house and dishes, etc until it was time for him to go to bed and do it all over again. Even with all of the help we had, I knew for the kids and Matt's sake, as well as my own peace of mind, it was time to call mom.

I started this process all Pink Ninja, all this isn't going to break me, I got this, bitches last for ever, blah blah blah.  I'm here to say that was erroneous information, I must have misread the instructions. Days 5-7 were here to show me....well otherwise...I was defeated.  Curled up in a ball sweating, freezing, moaning, mouth sores, face break out, head pounding, nauseous like ye ole days of early pregnancy, body swishing through sludge.  Weds, I was able to get down some baby protein shakes and Thursday some eggs, and slowly started feeling better.  

I thought about the lesson here.  Maybe I was just wrong.  (who me?)  Maybe the whole point of this dumb ass cancer IS to break me...and with each little crack, each little defeat, I let a little bit more light in.  I feel a little stronger knowing I made it through the shit storm, and as I visualize that my body is getting rid of more cancer cells, my spirit, soul, perspective are invigorated by my coming back to 'life'.  Where I felt weak, I am now a little bit stronger.  Where I was afraid of the unknown, I face now knowing this:  cancer will not win, but in order to heal, it WILL break me, again and again. I know now that that's the point.

Lather. Rinse. Repeat.

lessons from my father

What has been taken from you can never be replaced
But what you have given me can never be taken away
See you in heaven

A little after my 30th birthday in 2002, my dad called me.  His voice was somber, he started, "hi peaches" and then "I have something to tell you...", his voice cracking on the 'you'.  Then I heard muffled cries and his girlfriend's emotionless voice "Your father can't talk to tell you this.  He has leukemia, a really aggressive kind, and the doctors have told him he has 6 months to live."  I remember crying out noooooo nooooooo, immediate tears and my knees buckling and falling to the floor.  Whenever I see a scene in a movie when someone is so stricken with agony that it presents in physical pangs, I think to myself  'I know this pain'.

My father was such a positive and uplifting energy in my life.  He was always there for me, called me constantly and we confided a lot in each other.  The months that followed I would go to my classes M-Thurs and hop on a bus from NYC to Boston, stay at the Ronald McDonald House and be with him every moment from Fri to Sun.  I did this while he was at Dana Farber where he stayed for different chemo clinical trials.

Every visit seemed to be more intimate than the one before.  A dying man, who although wanted to appear brave, feeling the need to tell me all of the things he had held in.  He talked a lot about his time in Vietnam, his upbringing, his marriage and divorce to my mom, and his current relationship. (even though I say girlfriend, they were together 23 years so it was more like his 2nd wife).  My 'stepsister' for lack of a better word (it seems weird calling her his girlfriend's daughter because in many ways we grew up together) had 3 children at that point who he doted on. He loved them so much, he glowed when he told me stories about them.  He was the most happy spending time with his children and grandchildren.  I saw then what my future children were being robbed of.  I'm so happy that my stepsister gave him that joy, and I know that they loved him back as hard as he loved them.  I wish so much that my children had even a moment with their grampy.  They know him through my stories and they ask about him lots, but I know how much they would have embraced each other.  I got to see it firsthand through Maraina, Tristen and Maerta....an unconditional love.  My dad was the kind of person who always had your back...complete support and always there to talk it out.

I went back to college later in life and was graduating on May 10, 2003 about 8 months after his diagnosis.  There were certain things that he was determined to do.  One was to walk my stepsister down the aisle in April of 2003, which he got to do, and two was to see me graduate from college.  He would tell all the nurses as they came into his room "yup my daugther is graduating summa cumm laude" pronouncing it correctly and loudly, very proud.  He came to NJ but it was cold and rainy out, and he was already very fragile and his blood counts were low, so he wasn't able to be at the actual ceremony.  We had a party after at my in-laws house, and he seemed so happy and healthy - had a great appetite, which was not the usual!  It meant the world to me to have him there.  On his drive back to Maine, it seems that my dad's breathing was getting progressively worse, and his girlfriend drove him straight to Dana Farber in Boston.  A few days later I got a phone call from my aunt and brother, they were with him and the doctors and nurses were telling them that it 'could be any time'.  Matt and I immediately got in the car and drove, arriving in Boston somewhere around 2a.m.  The next day we took him home to Maine, and he died the following day with his family surrounding him.  I really think once he walked my step sister down the aisle, and made it through my graduation, he knew he didn't have to endure in his failing body anymore.  

It was an honor and a privilege being his daughter, experiencing a beautiful closeness as he neared death that many people will never experience in a lifetime.  If you remain open to the gifts during the darkness, they will come to you.  The beauty of impermanence is that we never know what can or will happen in any given day.  I've been moping around these last 2 days because I now know that in addition to my 4 rounds of chemo, I need to do 6 weeks of radiation.  I am trying hard to be done with the moping.  I had my pity party now it's time to pick myself up and go back into beast mode.  I will do this because I have to,  My dad knew he was dying but tried everything.  I think he had 9 rounds of chemo and clinical trials.  He didn't give up hope until we were at the end and then the hope of living became the hope of living without him.  I am so blessed to have gone through that time with him to better prepare me for this time that I face.  My cancer is not terminal, I was not given 6 months or even 10 years.  I have a lifetime left to embrace.

Chemo starts next Friday, 4 rounds in 12 weeks.  Radiation everyday for 6 1/2 weeks after that (well Mon-Fri, it's like a job I get the weekends off).  This brings us to July 8th....I think I will allow myself to heal for the remainder of the summer before getting my final reconstructive surgery in the Fall.  2015 will be largely dedicated to kicking cancer's ass but I do it knowing I will be fine and better for it in the end.  I hope that when we face uncertainty in the future, we will look back at this time, and know that we can do hard things.

Whatever the future holds, I pray my children will draw from this time, and know, no matter what they face, WE GOT THIS!

Try

Yesterday I had a mini meltdown.  I picked up the kids from school after I had gotten it in my head that I'll need radiation.  I figured it would distract me and I would get a great reaction b/c they would be pleasantly surprised to see me.  Instead they got in the car as if I've been picking them up everyday for the past few weeks and gave no reaction whatsoever.  Then they got of the car and unbeknownst to me were playing in mud, slipped in mud, basically covered in mud.  They then proceeded to get back into my recently detailed car covered in mud, making it a mess everywhere.  I just lost it.  I yelled, I got home and left them in the hands of my mom and escaped.  Then I cried.

I feel like I live my moments in life to different sound tracks and I usually have a song for everything. I keep hearing the lyrics to that Colbie Caillat song: you don't have to try so hard, you don't have to bend until you break,  you just have to get up, get up, get up, you don't have to change a single thing. I've been trying so hard to keep it together. I feel like I'm good, taking things in stride and being true to my feelings, but then a random nonsensical thing occurs.  It tips the scale, and I go from treading water to drowning in irrational emotions.  It's really not about the little spontaneous nonsense du jour, it's all the underlying anxieties about the unknown that I'm trying to suppress.  Not unlike sitting on your over-packed luggage so you can jam it shut and zip it up....a few too many items can keep you from holding it all in.  I bend until I break.  

I'm not quite so sure how to do it differently.  I don't want to not take things in stride, and I am truly not ready to deal until it all bubbles to the surface, seems too late.  My m.o. has always been the same.  Do it all, smile pretty for the public, break down in private.  I wish I was programmed differently but this is my way.  I don't think there's something to fix here, nor a better way for me.  I guess it's one of those idiosyncrasies that make me who I am.  I am as good as my day, so my best might be mediocre on some days......and that's more than acceptable, especially now.  I guess it's just about forgiving myself for my ways.  It's part of my programming, and I accept the bad with the good.  I am just not a fan of the meltdowns, they throw me for a loop, I downward spiral and I find myself at the bottom of a dark well with no way out.

I am so lucky to be forced out into the world b/c of kids activities.  Today I went to the boys' basketball game.  It was full of people........including some pretty awesome people, other moms mostly that reached their long arms into the well and pulled me out.  They probably didn't even know - but the interactions with warm people who share themselves in such a real and raw way are SO helpful. Reaching out and connecting with me to let me know that it's all good, I'm not alone, and make me remember to go easy on myself.  It's ok that I implode or fall to pieces from time to time.  It might not be the best way, but's my way.

Look into the mirror, at yourself.  Don't you like you?  Cause I like you.

I am my hair

I've had enough, enough, enough

And this is my prayer

I swear I'm as free as my hair

I am my hair, I am my hair

~Lady Gaga

I feel like the past couple of weeks recovering, I didn't have so much to say on a daily basis and I didn't want to force my entries, but at the same time, I feel like I haven't been very good in updating all of you who have been so giving of your time, love, kindness, prayers and energy!  So here goes my attempt at an update but yet feeling somewhat uninspired to write at the moment....let's see, finally today I got the last of my 4 drains removed, which is AMAZINGLY quite relieving.  I didn't realize how the tubes are placed around each tissue expander and have been the cause for so much pressure and discomfort.  I still have quite a lot of tightness and discomfort in the chest, shortness of breath and limited arm mobility, and some residual pain.

I have made many baby steps in progressing from walking around the house to walking around a store, to attending a basketball game (my boys' game which was an hour), eventually getting my hair done, and finally joining my son's class at the art museum for a field trip yesterday.  Quite the progression! Most importantly I have been given visual motivation to keep on keepin' on.  I got the hair that I've been envisioning and feel like my outsides finally match my spirit - just feeling ready to knock this out and move along to the next step.  The journey to the Mohawk was quite an experience in itself.  It involved 2 stylists and 1 Heather traipsing me to and fro, and hours of work. Tuesday the intial cut and color was done, and while I was initially satisfied, the next day it felt incomplete, like I wasn't quite there yet.  Sort of like it felt before Livia arrived - a presence in the Kaplan cosmic waiting room ready to join us - our family was incomplete without her.  I searched on in an attempt to get the vibrant colors I felt were missing, I found my way to one Karson Kelley, who 1) gave me the colors I was wanting and 2) I believe it was more synchronicity than coincidence, and he wasn't just an amazing fire breathing 'hairtician', but a transcendental transplant from Kentucky that I was supposed to collide with on this part of my journey.  I had an excellent day of destiny.

The above outcome is the product of many factors, including google, friends, timing and universal alignment.  I feel like myself, and I am quite happy someone was able to decipher my attempts at emoting my need for harmonizing my inner and outer selves.  I'm not sure why but hair has always felt like either an expression of what I was feeling or the compass of how I want to feel.  The need for getting it right was inestimable.  Because honestly, cancer - no problem, I'll conquer no doubt.  Surgery - got through this one, and I'll get through the next.....but BAD hair?  NOT. COOL. DUDE.  The fall out of bad hair is worse for me than the cancer diagnosis.  You are only as good as your day, and when you look in the mirror and your insides are not in accordance with your outsides, then they can cause a mutiny of that confidence, and your morale will literally do an about face. For real, yo.  Just like your most excellent hair day says I MUST, I CAN, I WILL.  Your bad hair day says I COULDN'T EVEN, NOT A CHANCE, NEVER HAPPENIN'.  I concur...good hair? 2 snaps up! bad hair?  Hated it!  

Whether you or anyone else likes my new hair or not, couldn't matter less to me. One gift of cancer is the gift of I could not possibly care less what you think. I'm doing me. So, for me, this is the hair I need for right now. I believe that this is most definitely the hair that will kick cancer's ass.  It's sort of like a vision board, but on my head, and well not so much a board as it is fibers out of follicles.  Those of you who get it. get it.  Those of you who don't, well I can't help you, sorry.  My speech is done.

To move along with my uninspiring update, I had a follow up appointment with my surgeon today and she wants me to see the radiation oncologist.  Seems I meet 2 of the 5 criterion for having radiation which is when they start to consider radiation a good bet:  1) my age, and that I'm so young (I actually enjoy them telling me I'm so young ;o) just wish it were a positive aspect in this case!) and 2) the unclear margins contained cancer in a 3 cm radius around the tumor and that is not what they want to see.  They want clear cancer free margins in order to rule out radiation....for these reasons, I am gearing up for the fact that I will have radiation following chemo.  I meet with my chemo oncologist next Friday to find out timing on chemo and hopefully the radiation oncologist appt will be ASAP too.  I'm the kind of person who likes to know each step and marinate about the process.  I like to know the facts - good bad ugly.

So while this isn't the greatest scenario, it's certainly not the worst, and more importantly it's the one I am preparing for.  In the meantime, I am my hair. And if I do say so myself, it's pretty kick ass.  Thx karson with a k.

And a quick but no less important shout out to all my brigade and bitches for everything.  I wouldn't be able to have made such a quick recovery without your support, and I thank you for every gesture, every meal, every visit, laundry delivery, child transport, gift, flowers, fruit and emails/texts/calls/cards with thoughtful sentiments, etc. etc.  I am indebted to you all!

The wound is the place where the Light enters you. ― Rumi

My dear friend Marcella sent me the above quote yesterday.  I believe in this wholeheartedly.  I always have, but now more so than ever.  This cancer is taking me on a journey in so many different ways - physical, emotional, psychological.  I have seen such goodness and kindness and compassion in people I know and strangers alike.  It would be hard for me to deny the light that has seeped in through my wounds and lit up my soul.  Thank you lovely people for all of the light!

I made it through the first step - surgery!  The first 24 hours after were the least fun, but I got through it, and each day the pain lessens some.  In fact, today, exactly one week later, I was able to get one of my 4 tubes/drains removed.  I was so excited to have another step down!  This past week has been a series of baby steps.  Getting out of bed, doing my arm exercises, stripping my tubes, emptying drains, eating enough, drinking plenty of fluids, using my incentive spirometer and getting the numbers higher and higher each day,  Lots of little goals conquered and replaced with new goals.

Each movement, from one day to the next, is like a victorious battle over this war that I was forced to fight.  I'm not unlike anyone else - I'm no hero, I'm not braver, I'm not stronger, nor am I particularly inspiring.  I was given cancer and I have to get rid of it, simple as that.  Truly, think about it - what would you do if you got cancer?  Lie down and die?  Of course not.  You've got to hunker down, and put on your game face.  You're going to take control of  the steering wheel and enlist, because if not you're still getting drafted.  You may even head to the hair salon and shave the side of your head and get a blue stripe.  Whatever works, whatever gets you in game mode.

I don't want to downplay the importance of attitude.  It's EVERYTHING.  But my attitude is not something that just happened because I'm such a positive person by nature.  I tend to be a bit of a high/low kind of person.  I let myself go to dark places but then my highs are really high.  That said, I purposely surround myself with people who knowingly or not, get me out of the darkness.  Henceforth (whaaat?) I cannot take credit for the influence that family, friends and community whose gestures have all been so uplifting.  My support system is so vast and so fortifying - how can I let myself go to the darkness when all you little sun rays keep shining on me? 

As you may know, I received the great news that I am Stage 1, meaning that there was no cancer found in my lymph nodes.  YAY!  Because my cancer is triple negative, I still need chemo and because they didn't get clear margins (cancer found) I may need radiation.  Not so happy about that, but obviously I gotta do what I gotta do.  I do it all in the name of BOOBIES.  As in new ones.  As in bigger.  As in HELLZ YEAH.

Thanks for all the light.  I am getting better and stronger each day because I feel the constant warmth!

xoxo, B

oh what a week it's been

Not going to lie, it's been a tough week.  Last night I was up until 2:00am thinking about surgery, just feeling anxious about it all.  I know it's part of the process of getting the cancer out, and I am happy for it to be over.  I'm just not looking forward to the actual surgery and aftermath.  First the surgeon will make incisions underneath my breasts and then do what she described as surgery in a cave.  She'll remove all of the tissue and then do a sentinel lymph node removal to be sure it hasn't traveled into the lymph nodes.  They will place a port in my clavicle region that inserts into my jugular for chemo, and tissue expanders will also be put in. I will have tubing going through and out of me that I will have to 'milk' into 4 drains that will be attached to a surgical bra I will wear.  This just all sounds very alien like to me.  And gross.  For a woman's detailed experience, click here.  It might seem strange that I want to see this but I like to know what I'm in for.  Fear of the unknown is so much worse than cold hard facts.

Lots of emotion about my state of consciousness during surgery:  Fear. What if I don't go all the way to sleep and I can hear what's going on around me?  Anxiety. What if they forget what surgery I'm having and do something different? (really far fetched!) Excitement.  What if we really do get to visit with our departed loved ones and I get to have a few hours with my dad? (Bonus!) Fear again.  What if something goes wrong and I didn't prepare the world properly for my departure? (OK, take it down a notch there crazy cakes). Then anger. Just wtf really. (Don't even think you have a chance at winning here, you sneaky little body invader).

Most of all I feel like I'm grieving the loss of the body that I know, the one that I have become mostly (somewhat? ehh) comfortable with and in (although I've always been flat chested and complained about that, it doesn't make it any easier to know they will lop off what little breast I had).  Dear body, I know I put you down a whole lot your entire life.  I apologize.  Hindsight, huh?  You have served me well until you started with this cancer bullshit.  I'm sorry to have to do this to you, but it is for the best.  I promise to accept your replacement more than I ever did you.  It's not your fault I had insecurities, but I certainly do not want to breed that mindset.  I want to embrace my new body with the self love my old body never got.  I understand now, more than ever, how important that is.

The past week, while hard as we come upon surgery day, has also been a week of jaw dropping, tear jerking beauty.  The thoughtful gifts that have been offered to me, the warmth and support from strangers, t-shirts made for my bitches and foundations calling me to offer help, guidance, advocacy.  I am here to tell you that even though the world is full of assholes, it clearly is overflowing with unbelievably selfless, gracious beings that have shown me more love and support than I can ever repay.  I love you all.  True love that says, I am here and want nothing but to offer you anything you may need - be it physical or emotional.

My mom arrived Saturday and her presence brings me great comfort.  We will be well supported while she is here in so many ways by outside help, but the one thing that is most important to me is my children feeling comfortable, loved and having someone that says home to them, and that is my mom.  She is having a tough time accepting the outside help because she wants to do it all, but I'm here to tell you mom that people just want you and the kids to be together and for your time here to be about....well time with us, and not working like a dog!  I know that is hard for you, but please accept this gift.  It's quite a remarkable thing that will happen when we open our arms and hearts to embrace the kindness offered.  I love you so much, and I can't imagine getting through without you.

To my husband, I promise to ask for what I need and not make you guess.  I know you are concerned with how to be there for me, but I vow to communicate my needs when I need them.  I promise I don't need anything but you.  No gifts, no flowers (but tulips are my favorite) and certainly no plans for a vacation somewhere tropical when this is over....I love you and thank you for your strength and love and comfort not just this past month, but since the day you told me you used to dream of the girl who you would marry, but she had no face, and when you met me, you knew I was that girl.  I love you so much.

To my children my beautiful children......I promise that even though I'm crazy cakes and my head takes me to dark places, I will definitely wake up from surgery because who else will take care of you little hooligans.  I might pretend I'm in a lot of pain just to get a couple more nights in a quiet hospital, but other than that, I promise I'll be home.  Thanks for keeping me positive and giving me so much to do that I don't have TOO much time for over imaginating!  You are my little mirrors and show me all the time by your actions, exactly how many mistakes I make on a daily basis....but you're also the very best of me (and daddy), and I am so proud of who you are right now, and the prospects that you all hold for the future.  You are going to be amazing, all in your own unique ways.  The world better watch out!!

To my family, neighbors & friends, whether it's a blanket, gift baskets, a phone call, a text, a healing thought or intention, a pre-treatment party.....I could go on and on here....you guide me to positive places in my mind and spirit.  Your friendship and love is truly palpable and divine.  I am not Oprah, but one thing I know for sure?  I.AM.LOVED.

As Auntie Norma, used to say....2 more sleeps! (until surgery)