2014...Ready or Not

I am often grateful for the little things, and today that means taking a long, hot shower.  It's amazing how powerful and restorative it can be for your body and your mind.  I am delighted to welcome 2014 with a clean set of jammies and a feeling of being able to care for myself. 

My last doc visit went well.  All is on track.  My only disappointment was that things are going to drag on a little longer than I had hoped.  Next surgery can't take place for at least three months just to give my body time to heal so that means that it will have to be spring break.  (Well, implants can still be appropriate for that holiday as well so the count down continues.)  So the schedule is now visit my favorite plastic surgeon every two weeks, regular treatments still ongoing every three weeks, oncologist every six weeks, cardiology every nine weeks...(being a patient can be a full time job in itself.)  Reconstruction involves expanding the skin over a period of time with a series of injections, which is why I have to visit my plastic surgeon regularly.  (No, it doesn't hurt at all.  It can just be a bit uncomfortable because the skin is pretty tight.)   

FAQ What treatment do you have every three weeks?
I started a treatment called Herceptin on June 7, 2013.  (It was one of the drugs that I got at the same time as some of the chemo drugs.)  The protocol for this drug is 52 weeks, which means that I will continue with this particular drug until June 7, 2014. 

FAQ #2 What are the side effects?
For me, Herceptin has not had any side effects.  Yahoo!  I am also given Benadryl at the same time to prevent any allergic reactions and that makes me feel sleepy and drunk the moment it hits my system.  I sleep it off and am usually fine the next day, although sometimes there is a bit of a hangover. 

FAQ #3 Did they remove the port when you had the second mastectomy?
No, I have to keep the port because it's still in use until the Herceptin treatments end in June.   That will be the final procedure.

FAQ #4 Why do you have to see cardiology?
So far so good but every nine weeks they check to make sure that the Herceptin is not causing heart problems.  I love that my oncologist is very conservative about all this so it's not something that I worry about too much.

It's New Year's Eve and who knows what 2014 will bring.  Last week a friend was diagnosed with cancer but she was not a lucky lottery winner like I was.  She heard those miserable words involving a few months.  About the same time, another friend found out that she is going to have a long-awaited baby.  She is understandably ecstatic.  Both of these friends inhabit the same little corner of the planet but their experiences in 2014 will be incredibly different.  Their journeys will intersect with mine and put me on a slightly altered course as a result.  And that right there is the meaning of life.  May we each recognize the gifts that are walking alongside us in 2014.         

Click here for a little New Year's gift from one of my favorite people, Diana Nyad. 

A Holly Jolly Update

Surgery went as planned on Monday and I even got to go home that same afternoon.  I actually feel pretty good!  This time around is much easier than the first mastectomy because no lymph nodes needed to be removed.  It means I have use of my right hand and arm, and that's made a huge difference.  I also think my frame of mind is so much better that it helps with recovery, too.  This time there are no pathology reports to wait on to see what stage, where is the cancer, what will treatment be, and during all that waiting your mind automatically goes to the worst end of the spectrum, thinking of all the horrible scenarios that could play out.   This time the only thing ahead of me is a pair of beautiful implants and a day at the beach.  So for now I head back to the doc every week or so while my skin expands and will get the implants around Mardi Gras.  How appropriate!  

Twas the Night Before Surgery...

The weeks roll by pretty quickly as I move from one treatment to another.  I just passed the 27th week, which means that I now only have 25 weeks of treatment left!  (Not that I'm counting or anything.)  And my counting confused many people as I was so excited after completing chemo that many people thought I was finished with all treatment.  Not quite.  So yes, chemo is finished but no, all treatment is not completely finished.  Don't feel bad if you can't keep up.  It's complicated unless you are doing the counting - then it's just a simple matter of weeks. 

So, more confusion to add to the mix...yes, mastectomy is tomorrow but no, it's not because I have cancer in my other breast.  It's prophylactic as they say and yes, it was my choice.  This go round is much easier than the last because of that - the waiting for results is a killer - and also because it's been well planned in advance.  Other little details are great, too, like the fact that without much hair I won't have to worry about not being able to wash or dry it for a while!

So in case I am out of it for a while, Merry Everything and here's to an UNeventful 2014!  And remember what Ferris Bueller says..."Life moves pretty fast. If you don't stop and look around once in a while, you could miss it."  Don't miss it!  

...it's my birthday, too, yeah...

I had a birthday recently and so many great reasons to celebrate.  After all, here I am, healthy in mind, body, and spirit.  I stopped celebrating years ago, always thinking what's the fuss.  Been there, done that, right?  But that was pre-BC.  Now it's more like, "Start the party!  Bring the wine (or cocktail of choice!)  Here I am!"  There are reasons to celebrate every day.  I think little kids have the right idea; I shall be celebrating half birthdays, too!    

Cancer changes your perspective on everything from birthdays to a government shut down.  I now  have little tolerance for self-inflicted wounds or the intolerance of other people.  Like Tim McGraw says, if tomorrow was a gift, what would you do with it?  Most people are not fortunate enough to face that question and come out on the other side unscathed in order to enjoy the gift.  I am grateful for This Birthday and all those that are to come (including the half versions)...let me count the ways...

Thirteen Things I am grateful to be without...
bleeding gums and other mouth issues
dry eyes (the kind where your lids actually stick together) 
nausea/vomiting/diarrhea
an upset stomach when I eat
an upset stomach when I don't eat
an upset stomach when dairy comes near
tiredness
lethargy
exhaustion
night sweats
insomnia 
a scalp that hurts to touch (even when you place it ever so gently on a pillow)
HAIR LOSS!!!!

What remains is very easy but continues to be a weird mix of chemo-randomness - toxic fingernails that are quickly growing out, joint pain in my ankles and sometimes wrists, and neuropathy in hands and feet which does get better every day.  (I wore shoes one day this week for the first time in months; yes, I am also grateful that I work in a place where I can wander around in socks instead of shoes and people not only think it's great but they give me presents of socks-they-think-I-will-love!)  

My cancerous scarlet letter is fading as the hair begins to grow.  I have eyebrows, eyelashes, and a scalp akin to a Chia pet, only jet black rather than green.  I realize that in a few months the hair will be long enough where people will begin to think that I simply have a short hair cut.  I wonder what it will be like when there is no outward sign of my canceriffic life.  Will it be like getting used to not being pregnant any more?  If you've never been pregnant, when you have a huge belly and a growing baby the public adores you.  People become nicer, friendlier, willing to share stories - they see you as a kindred spirit if they are a parent, and they want to protect you, help you, coddle you.  Life is similar as a chemo patient because you wear that scarlet letter on your bald head and once again, much of the public views you with empathy and warmth.  (A side note - Alas, some people do not fit this description and view you freakishly; these people deserve the tongue lashing that they get.  I feel it's my duty to educate them.) 

"That was the worst thing about having cancer, sometimes: the physical evidence of disease separates you from other people. We were irreconcilably other..."                -John Green, The Fault in Our Stars

So what will life morph into in the coming hairy months?  Stay tuned.  Right now I will ride the cancer gravy train while the world sees me as The Cancer Patient, first and foremost.  You can't fight the tide all the time.  Meanwhile, I continue to have treatment every three weeks, take a new pill daily, and I see a slew of docs on a regular basis to ensure that nothing to keep me cancer-free will cause some other variation.  So far so good and luckily I love my team of amazing MDs.  Also, the countdown to mastectomy #2 continues - about a month away!   

My teenage daughter recently recommended a book that I read twice in succession because it was that good.  John Green's The Fault in Our Stars is an intense, emotional read and hard to believe that that's what the adolescent crowd is reading these days.  For better or worse, today's teens are incredibly sophisticated.  It is a story of first love that also happens to revolve around terminal illness and is incredibly deep and powerful as it reflects on the meaning of life and love.  It was a book that stuck with me long after the reading, and I collected many quotes from it, like the one above.  Green's protagonist notes, "Sometimes it seems the universe wants to be noticed."  Yes, indeed.  I now notice The Universe like never before.  Happy Birthday to me and to you!

Very Quick Update

Post-chemo things continue to roll along with few changes as of right now.  That means side effects are still around but energy is growing bit by bit.  Hair is coming in on my head but still coming out from eyelashes and eyebrows.  Basically, my body is quite confused but trying hard to get back to normal.  Treatment in the office every three weeks continues, and the next mastectomy is scheduled for December 16th - woohoo!  One more phase coming to an end soon!   

PS - Don't read anything into the short post...I know I'm usually much more long-winded than this but no, it doesn't mean anything's wrong.  Just close to my bedtime and I want to get back to a fabulous read.  Happy Fall! 

Decapitation

Yes, I am going to write about decapitation but not mine, don't worry.  First, a quick update. 

While I have finished with chemo (Yay! Hurrah! Huzzah! etc.), the side effects continue and honestly, that is quite aggravating.  Yes, my doc told me they could last from a week to a year (and then some), but that's not what I heard in my head.  What I heard was, "Usually this is what happens, but YOU are SO unique and SO special that your side effects will stop at once."  After all, she actually told me once that I was a "fine specimen" and another time she said that she was "tickled pink" with how well I was doing and that I was an "overachiever" in the realm of breast cancer.  (Yes, she really talks that way and I love it!)  But alas, I am inside the bell curve concerning side effects so the fun continues.  It isn't awful, in fact it's not that bad, but after seven months I am more than bored with the whole patient thing. 

The current schedule is a non-chemo treatment every three weeks, which began August 30th and will continue through June 2014.  It lasts less than two hours and so far I have no side effects from this type at all.  I just get sleepy because I receive it with Benadryl (via the port) and apparently I'm a lightweight when it comes to these meds.  After getting the sleep I crave, it's all good. 

So, getting back to decapitation...I came across a great study this summer concerning the memory of planaria.  These are flatworms that are used a lot in research labs, and they can regenerate parts of their bodies.  After decapitating planaria, researchers at Tufts found that these flatworms could regenerate not only their heads/brains, but their memories as well.  (If you are wondering how a human could possibly know that a planarian actually had any memories at all,  you are getting off track but I will humor you because I was enthralled...apparently the researchers "trained" the worms to disregard bright light, which they don't like, in order to reach a food source and then off with their heads.  After two weeks the heads/brains regenerated and researchers put them through the same bright light trials to see what they "remembered."  The short version is that within a short period of time the planaria recalled the food source and got to it.)  This made me so happy!  If a worm can get its memory back, that means I can, too!  I often feel like I've lost my head these days so I look forward to regenerating my brain (and other body parts) in the months to come.  

So long as the memory of certain beloved friends lives in my heart, I shall say that life is good.               -Helen Keller 

PS to all my environmentally sensitive friends out there:  no worms were harmed in the writing of this post, so please direct all complaints to the biologists at Tufts University. 

Another Phase Complete

I am falling asleep as I receive The Last Chemo Cocktail! There is more to come on the journey but this is phase is officially over!!! If my body could handle it you would see me running laps and jumping for joy. Know that I am celebrating on the inside and I can't wait to have a proper celebration in the near future! Going to sleep with a smile on my face and gratitude in my heart. Much love to all those who have gotten me through the last 24 weeks.

 

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I've Got A Secret

Proceed with caution.  Before you begin reading I must tell you that the news I am about to reveal may disturb some of you.  Consider yourself warned.

I have a confession to make.  I was caught fondling school supplies by an Office Depot employee last week.  While my daughter was searching for the perfect binder, I was caressing the notebooks and feeling the weight of the paper, fantasizing about what my handwriting would look like between the margins.  Yes, I also own a label maker, and use it to its fullest potential in many different settings.  Not surprisingly, in order to mask my addiction, I went into teaching so that I could appear reputable, all the while hiding the fact that I found great pleasure in retractable Sharpies and reveled in Super Sticky Post-it Notes.  Now you (and the Office Depot employees) know my secret: I am a school supply junkie.

And so it makes sense that this is my favorite time of year.  Sharpened pencils, the smell of a brand new dry erase marker...I could go on and on.  But there are other reasons, too.  There's the fact that I work in a place where it's hard to get anything done the week before school starts because the adults are very busy catching up after being apart for so long.  There's the fact that many of us have been together through weddings, funerals, babies, and illnesses and are connected on many levels.  There's the fact that they stimulate and challenge me intellectually, support me emotionally, and some just make me laugh when I need it or when I least expect it.  They are more than ready to celebrate with me as this phase of the journey draws to a close in the coming weeks, and I certainly look forward to it.  Until then, I will continue the countdown and give thanks for the daily presence of the people who surround me most of the year (nestled among the school supplies.)

In case you have lost count I am happy to report that I only have 2 treatments to go, which means that I have survived 22 weeks of Chemo Cocktails!  (I cannot begin to put into words how ecstatic I am about that!)  Side effects continue, and the strangest one at the moment is termed chemo-induced peripheral neuropathy, which basically means that my fingers and toes can tingle, hurt, react to heat (as in a shower), etc.  The good news is that my oncologist gave me a prescription for it, which not only works really well, but also causes sedation.  Since one of my other side effects has been insomnia, it has balanced out my sleeping!  I also have a teeny bit of stubble on my head.  Another wave of ecstasy.  (That ranks right up there with beautifully patterned file folders but sssshhhh, don't tell!)  

A Tale of Two Babies

The world was all abuzz this week over the birth of a baby.  One baby boy in particular.  One prince that will lead a life surrounded by wealth, luxury, and power.  On the day of his birth, I came across another baby who had a very different life.  Stopping at a red light, I pulled my car up behind a van and noticed the Nevada license plate.  Then I read the sticker across the back windshield in honor of Connor Dean Lawrence.  As I sat there thinking about who Connor might have been, I saw the dates and even my chemo-brain could count to two.  Connor was only two when he died.  I have no idea why but I was compelled to find out how he had died.  I was actually thinking that he must have had some horrible childhood form of cancer, and I was grateful at that moment that I had been the one diagnosed with it and not my children.  But Connor was not killed by any disease; he was killed at the hands of "his mother's estranged husband," said the Internet.  (The murderer is currently serving a life sentence without parole.)  That brings me back to the first thoughts I had on beginning this journey:  life is so random.  One baby is born into such privilege and another baby is brutally murdered.  I have the potential to walk away from this completely unscathed, while some of my cocktail buddies can't even receive their treatments because their blood counts don't allow it.  (I hadn't even realized that this is, of course, a possibility each week; it has just never happened to me.)  Baby George & Baby Connor.  Me & those whose journeys are not so light. 

"It was the best of times, it was the worst of times...it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair..."     
- Charles Dickens

So my journey continues and I am grateful to be in "the season of light and the spring of hope."  I have four weeks to go and the worst part is the insomnia and upset stomachs, not much to complain about in the grand scheme of things.  AND my hair appears to be coming in!  Although my head looks like the back of a baby elephant, there do appear to be little sprouts, even while the eyebrows and eyelashes continue to fall out.  Randomness all around.  And plenty of gratitude. 

I leave you with another of my favorite TED Talks.  Click here to watch Tania Luna.

July's Latest Update

Things continue to roll along pretty smoothly.  I am officially halfway through the second round and look forward to this Friday because it will be number 7 out of 12!  So much of this battle is psychological so it helps to say it's halfway over and then chemo will be done.  Round 2 almost over!  Meanwhile, there are no major side effects to speak of.  Nothing that knocks me out but rather a host of itty bitty irritants...eyelid twitching, sensitive stomach, night sweats, continued hair loss, insomnia...there are meds for the side effects of the meds already taken, but I have no desire to put more meds into a body that is already full of 'em.   

Instead I do things like stay awake all night and watch educational shows at 2am like Honey Boo Boo and Duck Dynasty.  Interesting.  I think about things like common themes...(you'd think that I was writing a thesis or something, although I'm sure there is a sociology program out there that would grant me a PhD for it...)  Both of these shows ultimately depict two families that love each other and love being together.  They have fun, take care of each other, and laugh a lot - a great recipe for happiness.  Many American families could learn a lot from them.  (You just have to ignore the fart jokes and potty talk and lots of other stuff!)  I've also enjoyed the naked shows on the Discovery Channel - Naked & Afraid, Naked Castaway - no, I'm not making those titles up - in the middle of the night they are quite entertaining.  Much more so than the show about the bubonic plague that I got caught up in on the History Channel.  (Did you know that in dealing with the Black Death in Europe thousands of Jews were killed as those in power thought they might win God's favor by doing so? I learned some gruesome facts that made it even harder to sleep after that.)          

Lest you think I am squandering my remaining brain cells on TV all summer, please know that reading is my primary task these days.  While I'm not lethargic the way I was with round 1, the weekly cocktails keep me on the edge of tiredness all the time.  I am more than happy to crawl into bed with a good book at any time of day, and I've gotten through quite a few over the last few weeks.  I am grateful for the time to let my body rest whenever it needs to and for the workings of my brain which finds reading possible and enjoyable again. 

As I countdown to August 23rd and The Last Cocktail, I am also excited about the next phase, the second mastectomy.  I recently met with my oncologist and my plastic surgeon, and we are beginning to talk about future possibilities.  The plan is finish with chemo, get all my counts back to normal and give my body a rest, and then complete the mastectomy as soon as possible after that.  I am also done with echocardiograms, which means that my heart is strong and survived chemo!  It feels like there is an end to the journey in sight! 

Second Round Update

Version 2.0 continues to roll along and life is good!  I'll go in for the third treatment tomorrow (3 out of 12), so I continue to count down with no nausea, headaches, or real sickness to speak of.  In addition, some of my brain is coming back to life so the journey has begun to lighten in several ways! 

My attention span and short term memory were hijacked by chemo many moons ago.  The scientific term for this is "chemo-brain."  (No, not really, but it should be.)  Its quite unnerving to be an avid reader who suddenly can't get through a sentence.  To find that once you could read four books at once but seemingly overnight you wouldn't be able to keep track of the antics of Dick and Jane.  Luckily my Dickens book club is on summer break anyway, and I am not quite ready for non-fiction, which I typically love.  But I have eased back into fiction and have fallen in love with reading again.  Not only that, but I have fallen in love with libraries and with turn-the-pages-smelling-of-musty-linen real-life books! 

Since I bought a Kindle I haven't read any other way unless it was on my iPad.  But just in case I was actually unable to finish a book, I decided to hit the library instead.  (Side note:  I've never been a fan of libraries.  I know - sounds weird for a reader but a bibliophile such as me likes to own, collect, possess, reread at a moment's notice.  You want to see it on your shelf, touch it...and then you run out of room!  So the Kindle then comes in quite handy because you still get to own it, refer back to it, and even zoom in on your favorite highlights.)  But since this was experimental I hit the library instead and fell head over heels.  I rediscovered some old flames like Wally Lamb, Pat Conroy, and John Irving, and my current love is Khaled Hosseini.  I am enjoying turning every page and so grateful that I want to.  I look for evidence of the "old me" wherever I can, and it feels so good to have this part of me back again! 

(I read this one twice!)

“I cannot remember a time when I was not in love with them--with the books themselves, cover and binding and the paper they were printed on, with their smell and their weight and with their possession in my arms, captured and carried off to myself.”                                   
                                                                                                 -Eudora Welty

Cocktails 2.0

The new round of cocktails has begun.  Version 2.0 is quite lovely compared to the first mix!  I went in about 10am and left about 3pm.  I have to admit that I did feel nauseous while I was there, but I think it was just anxiety about what was to come.  (Have I mentioned that I've watched 3 people get carried out on stretchers while I've been there for chemo?  It's quite unsettling and has made my anxiety increase over time.  But don't worry, there's a drug for that, too!)  They loaded me with enough drugs to knock me out, and following treatment I went right home and slept it off.  The great news is that I didn't feel many side effects at all so I am thrilled about that. 

Now, the cumulative side effects are really getting old, and I am so bored with all the physical stuff.  I try not to think about them too much because no one issue is really a big deal, but focusing on your body all the time is just tedious and dull.  Amazingly enough, as wacky as the side effects can be, the fact that there is something new every day has become very predictable....a lovely purple hue under my fingernails, eyelashes falling out, uncomfortably dry eyes...blah blah blah.  I wouldn't wish this on anyone 'cause it sure ain't fun, but can someone please tell Angelina that mastectomies are the EASY part?  Looking forward to my second! 
    

Update & The New Leg of the Journey

Sorry for the very late Friday update.  I think I missed several Fridays, in fact, but the life of a teacher is crazy in May!  Throw chemo in there and life really gets exciting!  We are still in the midst of faculty meetings, etc. so I'm not done yet but wanted to post a quick update. 

My last chemo round (#4) was definitely better than the previous one.  Although it always knocks me on my tush, I didn't want to crawl out of my skin like I did for #3.  #4 lasted about the same number of days (Friday through Tuesday), and I started coming back to life Tuesday afternoon.  That was about a week ago, and by this time in the cycle I have always felt my usual energy level and interest in life.  (I know that sounds weird but when I am in the midst of a chemo hangover I could care less about the world.  I can't talk on the phone, text, email and I can barely watch TV.  It's not a fun place to be.)  The great news is that I should not have to feel that way again! 

This week starts week one of the next phase.  On Friday I start a new cocktail, which will last for 12 weeks.  My doc says it should not make me sick like the old stuff, which I hope is accurate because it will be every week for 12 weeks.  Send me all the good vibes you can as I count down the summer! 

Angelina's Tawdy to the Pawdy

You have heard, of course, that Angelina Jolie is following in my footsteps?  She is a bit late in her arrival but with all those kids and that gorgeous husband we will forgive her.  (Can you imagine trying to care for all those children and trying to stare at your husband all the time, too?  How does she get anything done?  And doesn't the drool interfere with things?  I shopped with Mr. Hotty at Big Lots once and then he took me for ice cream at Baskin Robbins afterwards and I sure couldn't eat.  Ha - now we know how she keeps her gorgeous body...but I digress...and yes, that's true - Big Lots and Baskin Robbins right here in Metry!  Okay so he didn't exactly take me there and maybe I was sort of stalking him once I saw him, but my memory is fuzzy...)

So let's move on from Sigourney Weaver to Angelina...what do she and I have in common?  When I heard her interview, she answered the way any caring mother would.  The answer that comes from a mother's heart and is the reason that we do so much of what we do.  Why would you go through all of that/this/whatever if you didn't have to?  The answer is so simple - I want to be here for my kids as long as possible.  (Sorry, Brad, she didn't even mention you.  But I bet your mother would.) 

When I first heard my diagnosis, the only thing that scared me out of my mind was the possibility that my children would grow up without me.  Without a mom at those recitals, school plays, graduations.  Without a mom's input for life's important decisions.  Drawing a line of symmetry in their lives...that was before/after my mom died.  First dates, vacations, sweet sixteens.  I thought back to a friend who died of cancer whose only desire was to sew the wedding dress for her teenager that she would never see her wear.  So me and Angie...yep, we're tight like that. 

Happy Belated Mother's Day to all my friends who are in sync with me and Angie.   Here's a gift for you, but I have a disclaimer.  Before I had children this poem used to make me sad.  I honestly didn't get it.  But I do now.  Yes, I will die and leave my children one day.  But in a perfect world, I will be old, wrinkly, and have a very full head of gray hair.  I will leave knowing that I left the world a better place simply by bringing these two amazing beings into the world.  And through them I will touch the future.    

On Children
 Kahlil Gibran
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Friday Update

If you noticed that I missed a Friday Update, that would be because I was in a chemo haze that was the worst yet.  Not only did I feel terrible but I was unable to sleep, which meant there was no escape.  Thank goodness it ended and I was able to return to the land of the living this week. 

Yesterday's blood work looked great and we are on track for the last round of cocktails for this phase of the journey.  The great news is that this is it - one more and I will be celebrating.  The not-so-great  news is that there are still many more drugs to come; however, that has a silver lining in that the phase 2 cocktails are not supposed to make me feel as bad as the phase 1 cocktails.  Stay tuned! 

Friday Update

The Shaving of the Hair took over my world this weekend, but many friends asked about blood work from Friday.  It all looked great and even better than expected!  So that means we are on track for Friday's round of cocktails.  Another doc appt this Thursday to review everything and back on Friday for more.  I do have to say that I will be crying on Friday, though - this week chemo will keep me from Jazz Fest and Adam Levine.  Waah, waah, waah! 

Call Me Ripley

So it's official.  You may now call me Ripley.  I like to think of myself as Ripley whooping aliens, her bald head gleaming from the exertion of the asskicking given to the creatures around her.  Aliens sound like way more fun than cancer but I hope to kill everything in the first installment and not have to go for two sequels to get there. 

The million dollar question that everyone has asked today is how I feel about it.  When the hair started falling out, I was certain that I would shave.  I got ready to do it and just couldn't.  There was a bit of denial there...you know, maybe it won't ALL fall out...maybe it will stop falling out...maybe today is the day that I won't lose any more.  Fat chance.  Each day it would fall out a little at a time, and then over the last week it was raining down in bigger and bigger clumps (and then piles.)  That can be pretty disconcerting, to say the least.  I haven't really felt or looked like I was "sick" in any way, but suddenly I was looking in the mirror, seeing my intensely white scalp through the slender threads of hair still on my head.  No possible denial there.  So what's a girl to do? 

For me, shaving it today was actually empowering.  It was something that I could control and made me feel liberated.  No more waiting for it to fall out.  Now I can wait for it to grow back!  Meanwhile, let's count all the wonderful things about being hairless because the only hair remaining on my body is now my eyebrows and eyelashes (at least for now.) 

• The feeling of warm water on your head (without hair in the way) feels quite delightful and incredibly relaxing.   (I bet a scalp massage would send me off the deep end!)    
• It takes me no time to get ready now.
• My bathroom counter is clutter free - no combs, brushes, hairdryer, flat iron, or hair products. 
• I will save lots of money on shampoo.  (My hairdresser got me addicted to this amazing shampoo, which of course costs a fortune!)  
• I will also save money on waxing.  (While I do still have eyebrows, no new hair has grown, so I don't even have to pluck.)   
• I save time in the shower.  No need to shave my legs! 

As I said goodbye to my hair today, I was sad for only one reason.  It was the end of a relationship between my husband and my hair that has been so loving and sweet that I was sad to see it end.  When all the fun started in February, I was unable to wash my hair because I didn't have use of my left arm.  He would not only wash it for me, but he watched my hairdresser once so that he could learn to dry it the way I wanted.  (Yes, he even learned to use a round brush to straighten it!)  Today when I asked him to shave it, he did it without even thinking about it or questioning me.  He just knew I was ready.  Grand gestures are always lovely, but it's these little things that make you feel enveloped in love.  If your partner has never washed your hair, try it some time.  It can be quite intimate.

Now I've come to the end of Day 1, and I know that the decision was the right one.  My concern was that I thought I knew how I would feel about it after the fact, but you certainly can't control how you feel, and what if I did it and felt horrible afterward?  Well, thank goodness that didn't happen.  I do feel great about the decision and who in the world would have predicted that?!  I'm learning all sorts of information about myself as the journey unfolds. 

Signing off for now,
Ripley

The Breakfast Club

I am a nerdy fan of the social sciences and love to read all the current research about what makes us human. I especially love all the recent studies about brains, well-being, and close relationships.  There's all sorts of weird numbers like the idea that each happy friend that you have increases your chance of happiness by 9%.  There's also research about the kinds of connections that you have with your friends and how those that meet certain criteria have been associated with greater mental health, greater overall well-being, and lengthier lives.  I think it's why women often live longer than men.  Women get together with the goal of having intimate conversations, while men tend to have different reasons if they do get together.  

So I've been thinking about all this since I had breakfast with some good friends this weekend.  These are the exact kinds of friends that research says will keep you healthy....the kind that you have made memories with, stories to retell, with you to celebrate the good times, support you in the hard times, make you feel safe and secure, make you laugh....whenever we get together there is lots of laughing and shrieking and sometimes tears, too.  But to me the greatest thing about friendships like these is that anything at all can come out of my mouth and they will not judge me in any way.  Whatever I say and feel is okay, and there is nothing like being yourself - your real authentic Self - not the polite self, not the self that has to censor what is said or how it's said, not the self that talks about some things and not others.  With these galpals, I can just be me.

On this particular morning a story came out of my mouth that I couldn't believe I'd said out loud.  It's one thing to think something in your head, but very different once you speak the words and send them out into the universe.  I was overwhelmed by it but they didn't bat an eye; they both hugged me and the looks on their faces said it all.  They got it.  They understood me and my emotion.  No judging.  They know me - the Real Me.  And they love me. 

So here's a little thank you for them and for all the amazing people in my life who are comfortable letting me be myself, especially right now when my Self can change so rapidly from moment to moment. 

Thank you for letting me be myself...(click this link.)

Friday Update

Friday was a blood work check and all looks fine.  Some counts are low as expected, and others are lower than expected so those will be watched closely.  (I'm not sure my docs can watch me any more closely than they already are, though; it's like having your body under a microscope 24/7.)  Anyway, it just explains the tiredness that comes over me suddenly.  There is a bit of nausea that comes and goes, too, but Coke Icees work wonders. 

The hair is becoming a memory as it continues to fall and fall and fall.  I don't feel like shaving it right now and have opted to let nature take its course instead.  That can change, though; there is a little trace of bipolar tendencies that seem to accompany me on this journey so what I want one moment can easily change with the next instant!  Those around me will just have to suck it up and try to keep up! 

Tangled vs. G.I. Jane

"Anyone can be confident with a full head of hair. But a confident bald man, there's your diamond in the rough."        - Larry David  

(And a confident bald woman???)

Before we get to Baldness and sexy G.I. Jane, let's take it one step at a time....To shave or not to shave...that is the question...what would you do?  The keep-you-well drugs, which make you sick, kill off your hair cells so the question becomes what to do with a head full of dead hair that hasn't fallen out yet?

Well, the good news is that I won't have long to decide because clumps fall out continuously.  So, is the bad news that I can really be okay with losing the breasts I was born with but not okay with losing the hair on my head?  It's certainly another adjustment.  For now, the scarves are getting a work out and the wig is waiting in the wings.  I think I do want to just shave it off because it is oh so irritating to have a layer of hair all over you that is simply clinging to your clothes.  Stay tuned.   

PS - Wanting to leave you with uplifting images of hairlessness, think Ryan Gosling's chest.  Yowza!  

The Hangover, Part 2

Last Friday was a cocktail day and overall it was much better than round one!  First of all, I was much more relaxed since I knew what to expect.  That in itself was huge.  I knew where to sit (the wall is best rather than within the circle because week one I ended up having to play with others when I really just wanted to remain in isolation*), I knew when to go to the bathroom (definitely easier before they hook up my port), and I knew exactly how long each bag of meds would take (I wrote it down last time.)  I went to bed on Friday feeling quite lethargic but the hangover didn't really kick in fully until Saturday.  The great news is that the nausea, headaches, and lethargy weren't as overwhelming as they were the first time.  So now it's Tuesday and I'm ready to rejoin the world again.  Two more** of these rounds now seem doable! 

(*I can chat it up with the best of them, but for me, getting into my own zone is best when I'm forced to deal with this stuff directly.  One of the gifts of being older and wiser is knowing yourself.) 

(**There are only two more of these harsh rounds over the next six weeks.  There are more cocktails after that for a total of 52 weeks but they are supposed to be lighter fare.)  

Heroes on the Journey

Dr. Deborah Rhodes is one of my heroes.  I came across her name in an article and then watched her TED Talk.  Please watch and be informed if you still have the breasts you were born with! 

Watch Dr. Rhodes by clicking here. 

Recent FAQs

Q:  How much weight have you lost?  Are you eating? 
A:  Yes, I promise I am eating, and I've only actually lost about five pounds.  It just looks like more on my frame.  My appetite returned about a week after the last round of chemo, and I can now eat anything and everything (and I have.)  For some reason I haven't put the weight back on, but blame that on the toxins they are pumping into my body and no running.  (Mush weighs way less than muscle.)  

Q:  Will your hair fall out?  Do you have a wig?
A:  My hair is expected to fall out and has begun to do so already.  I don't know if it will just get thinner or fall out more drastically but stay tuned.  No, I don't have a wig right now.  To me that would be like buying a wedding dress when I hadn't met the groom yet.  I don't know how it will look, feel, etc. so I will wait and see.  But I do like the idea of a pink wig:)

Q:  Do you have good health insurance?
A:  Luckily, we have fabulous health insurance thanks to my hubby's terrific company.  We are fully covered and have no worries in this department.  I can't imagine the stress that people go through with a health issue and mounting debt because they are forced to pay for treatment out of pocket or even worse, have to skip treatment due to their finances.  Life just shouldn't work that way and humans shouldn't treat other humans that way.  It's so simple.  And seriously?  There are really people who believe our healthcare system is working as is...they must never get sick or they have millions and don't care about those who don't.  This stresses me out more than cancer....I need to meditate.     
     By the way, something to check about your plan...call me Pollyanna, but I was under the impression that once you paid your premiums and met your deductible the insurance would cover the rest.  How naive of me - that would make too much sense.  I have since lost my innocence and learned that of course they do not cover the rest.  Only if you have chosen to pay for that particular coverage.  Because my health is their business and they need to make as much money off of me (and you) as they can.  Which means that they are banking on me NOT having the full coverage, so they can say, "Actually, no.  There is a ceiling, which you have reached, so now the bills bounce back to you."  Like I said, we are fully covered but my heart did skip a beat just reading the form letter.  Check your breasts and check your plan! 

Let's talk about something more relaxing....

Q:  How often will you have chemo?
A:  If levels look okay, cocktails will be every 21 days with this Friday being the next round.

Friday Update

Sorry the Friday update is not being posted on Friday but I am feeling well and have been taking advantage of it!  It's amazing how a diagnosis like this can change your perspective on everything.  Totally true - I was excited about doing laundry this week.  It was the first time I had done laundry since the February phone call (yes, my husband and mom are that fabulous!) so doing a load of laundry took on a whole new significance.  It meant...
     Being a cancer patient does not define who I am this week. 
     I can take care of myself.
     I can take care of my family.  And anyone who knows me well enough knows that I am not fond of being dependent on anyone - this week I am contributing to the world instead of only taking from it.  It's been a great week! 

Friday blood work looked better than expected, which means we are on track for next week's round of cocktails.  I will meet with my oncologist on Thursday to review all the results and if it looks as good as it does now I will have the second round of cocktails on Friday, 4/12.  

Distractions on the Journey

One of my addictions and great distractions are TED Talks.  Here's a favorite...

Click to view Candy Chang's TED Talk.

Like Candy Chang, I am in love with New Orleans and get it when she says,
"My soul is always soothed by the giant live oak trees, shading lovers, drunks, and dreamers for hundreds of years."

Guardians on the Journey

I heard a report this week about the Sandy Hook families and the fact that each family was matched with a state trooper.  I thought it was kind of odd and wondered why.  What would they need a state trooper for?  It didn't make sense until I heard the story. 

The officers were called guardians and were simply at the disposal of each family - do whatever you can for them if at all possible.  This one particular trooper, Eddie Vayan, was more like a guardian angel.  He was there for the family as they waited to find out if their little girl, Katherine, was among the dead.  He stood at the casket for several hours because her brother, Freddie, asked that he stay and protect her body.  He was with Freddie's mom as she put him back on the school bus weeks later, knowing that the last time she had done that only one of her children came home.  Eddie Vayan's role was just to be there and do whatever they asked of him, and sometimes he anticipated their needs when they didn't even know what to request of him.  In the course of their time together, he became connected to them in a deeply meaningful and profound way, and they will obviously be connected forever. 

Watching that report, I realized that that's the greatest gift of the journey that I am on.  I have dozens of "guardians" who are simply here to walk with me and get me through this.  Some I have known since I was in grade school and some I have met more recently.  People who live near and far away, who see their role as supporting me in any way that I need, even when I don't know what that is.  To have so many loving relationships with so many incredible people overwhelms me these days.  The relationships are deeper, more meaningful, more appreciated, more wondrous.  It's an amazing gift, and one that I get to keep forever. 

To all my guardians, thank you.  I am grateful for you each and every day.  You make the journey light.  I promise to pay it forward.   

Friday Update

Fridays involve health-related appts in some way.  Today's was just bloodwork and was fairly quick.  They take blood and get the results within minutes so they can see how the levels of white blood cells, platelets, etc. look.  Mine looked the way they expected them to - levels are lower but still in a good enough zone to continue with treatment on a 21 day cycle.  I return next Friday for the same, and if all looks good at that point, I get the next round of cocktails after that.  So far so good! 

The Beginning of Leg 2

I am delighted to be writing because it means I am joining the world once again!  I have been in some other place since Friday afternoon.  Five different drugs went into this round's cocktail including all the keep-you-well drugs that they give you to counter the make-you-sick-as-a-dog drugs.  I settled into my easy chair Friday morning with about a dozen other patients, and my port went to work as planned.  It was painless at that point, and any anxiety I felt came from the anticipation of what awful things were going to start happening to my body that I wouldn't be able to control.  Visions of the Exorcist flashed but it was quite uneventful. 

Cut to Friday afternoon.  Had lunch.  At home.  Then it was like someone flipped a switch, and all I wanted to do was throw up or sleep.  Luckily, there were more keep-you-well drugs, so sleep won out most of the time and the overwhelming nausea could be kept at bay. 

Break for visit to hospital on Saturday for a shot of keep-you-well something or other that made my  bones ache.  (This was planned - 24 hours after cocktails.)  

Then back home to my cocktail fog.  It started to lift about Monday afternoon, when it became a piercing headache that would disappear as fast as it started.  By about noon today it subsided, and I have felt better since.  I am elated! 

More Prep For Leg 2

Yesterday I had my first echocardiogram.  Apparently one of the possible side effects of all the cocktails is weakening of the heart so regular checks will be the norm for a while, along with the many white-haired folk.  Another department to get to know at the hospital.  It was just like having an ultrasound when you're pregnant, except that there was none of the excitement of hearing your baby's  heartbeat.  (Of course, hearing your own healthy, rhythmic heartbeat does make you feel good, too!)  Hopefully it's just another precaution, and I will be running the Crescent City Classic next spring!  Something to look forward to....maybe I should buy a new outfit just for the occasion.  Time to do some shopping on Skirt Sports.   

FAQs

Q:  If the mastectomy was successful, why do you have to have chemo and all the other drugs?
A:  My lymph nodes looked great, tumor margins were clear,  and all the cancer was removed.  Cocktails and the upcoming mastectomy are simply to decrease the likelihood of a recurrence in the future.  My oncologist made it very clear when she showed me all the projections with and without cocktails.  For the long term, it just makes sense, especially since I'm so young!  "And may the odds be ever in your favor." 

Q:  Why don't you get a second opinion?
A:  I am very confident in the team of doctors that I have and trust them completely.  Because they all agree with the course of treatment and because the projections are all there in black and white, there really isn't much of a decision to make or to question for that matter.  It's the logical path, and I am most comfortable with that. 

Prepping for Leg 2

On Friday I had a Port-a-Cath put in, which is how the medication will be administered when all the cocktails start next week.  It wasn't painful at all, just an outpatient procedure that left me feeling sore in the shoulder area.

If you want more info on the Port-a-Cath, click here.

Path results show that cocktails will greatly increase my chances for a cancer-free future.  With that said, there was really no decision to be made - makes sense, right?  At the moment, it looks like I will start on 3/22 with a mix of chemo and other drugs.  Blood work in the weeks following that will indicate whether we proceed with treatments every 21 days or change that up.  I know it seems strange to many friends, but I am so looking forward to getting it started.  (The sooner we start, the sooner it will be over!) 

Leg 1

After getting The News, things moved very quickly.  Results were in on a Friday, and I was scheduled for a mastectomy on the following Wednesday.  This leg was fairly painless.  Reconstruction was started at the same time with a team of amazing surgeons, and I was quite ready to move on removing the other breast. That was put on hold by one of my surgeons who seemed to think I was making these decisions too quickly.  What he didn't know was that I had made these decisions long ago.  If you are an adult female, you've probably given this some thought, too.  I simply knew and felt it was the right thing for me.  But alas.  At this moment in time I have sprouted one beautiful perfect breast which sits high and mighty, gloating above the other....the "good one" seems to sag lower with each passing minute, biding her time until the summer perhaps when she, too, will sit protruding, perky, and proud.  I wait with bated breath. 

In The Beginning

So the page is swimming in pink...well, that's the point right?  Okay, I agree it's a bit much but pink is the new black, at least from where I sit.  On February 1, 2013 I got that phone call - you know the one.  While it was hard to swallow during those first few hours, I was surrounded by angels who swooped in and put my shattered psyche back together.  I couldn't even say the word cancer without crying at that point because there was so much unknown.  My mind automatically went to the worst case, thinking of friends that I'd lost this way or thinking of my sweet "Pawpaw" who got the same phone call in October.  The difference was that he received a message of "Get your affairs in order."  My message was "It's breast cancer but you caught it early and you will be fine."  You will be fine.  Four little words.  I won the lottery.  Four little words.