Statistically Speaking…

I know. I left you hanging for the last several weeks and been breaking promises too. Even though I kept telling you a post is coming, I was really just living up to the promise I made last blog.

Plans. Fun. Living.

But I know it’s overdue. So many questions and concerns flood me every day that I know I owe you an hour of my time.  So here goes…..

What’s up, Ashley?

Well…. I have been throwing parties. Getting tattoos. Celebrating milestones. Packing up the entirety of a home and relocating it to Tennessee.  Purchasing a house and making it our own.  Oh, yeah and living with terminal cancer.

Almost forgot this was supposed to be a medical update… (and I’m getting to it).  But you see now? I have cancer but it most certainly doesn’t have me.   That is not to say it doesn’t effect my life.  It definitely controls about every moment of my day and how I do it.  But I still get up in the morning and do it anyway.

So, ready for a shot of the hard stuff?  Literally the day after the big move, I was able to establish my treatment and care at Vanderbilt.  The first meeting?  A horse pill of an appointment to swallow solo.  Stubborn me decided it would be fine to go alone.  I left the office in tears.  Have I mentioned that I didn’t want to know prognosis and dates and such?  That would be too much like a clock ticking over my head.  She gave them to me anyway…

There is a very good reason that I haven’t given you guys the name of my cancer.  It is bad.  Very bad.  But I call bullshit on anyone trying to tell me how long I get to fight.  There are simply too many variables in this science experiment to predict my conclusion.  Damn it, I’m a rare unicorn of being super extra.   The doctor basically confirmed it.  NO ONE gets this type of reoccurrence.  Like… a tiny margin.  Just like only a small percentage of breast cancers are BRCA positive.  So guess what?  I’m really flippin special here.  Like…. they should being paying me for the insight, “special”.  I sincerely doubt that I fall into anyone’s straight and narrow.

Another thing giving me (and you) hope….

I had my first chemo one week ago.  That was definitely three hard days of awful but I only need to do it every three weeks.  Dude, I so got that.  But, thankfully we won’t really have to much longer.  We are awaiting FDA approval for a medication that should be available sometime as soon as June or July.  It would be a daily pill with significantly better quality of life.  (Sidenote :  I hate that phrase. It feels like yours supposed to pick length or quality and that’s just not the situation here, at least we hope).

So… That’s about all I have for you guys at the moment.  Just know that I’m still here…. Being that annoying special snowflake in the complete wrong way and trying to make my own statistics.

 

 

Faith. Fear. Facts

I know I hit everyone with quite a curveball.  I can’t promise we have all the information still.  It’s coming, and moving fast.  But I want to give you the facts first and foremost.  In this situation, there are two types of facts.  The ones that give you a perspective of my body… and the ones weighing on my mind.

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Stop listening

Let’s start with the science.  A spinal tap and sample of my cerebral fluid found traces of breast cancer within.  What does this mean?  It means that my brain and spinal column are circulating around with a cocktail of tainted cells brushing up on all the important parts of my neurology.  Most of the cells have adhered to the back (occipital) part of my brain.  If I had to choose, this would be the place I’d pick for it to happen.  This part of my brain doesn’t effect personality or memory or mood.  Another light.  There are no MASSES.  My brain is simply “coated” like a powdered donut. (YUM!)

After discovering the cancer was back, we performed a PET scan.  This is a radioactive injection used to highlight all traces of cancer in the body.  Here is where we have more good news.  The cancer is only in my spinal column, as well as a few lymph nodes of my neck.  I can not repeat enough how lucky I feel about this.  This cancer could have gone anywhere… Heart. Lungs. Anywhere.  For now it is contained, and the infection of an easily biopsy—able area helps with treatment.

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Turns out Eli is a “cancer sniffer” I asked him if I was dying the day before I went to the hopital. He knew.

So what are we doing with this mess….. Today I had my fifth round of radiation.  I have five more to go of my full brain.  They are trying to kill off as much as they can without attacking my spine.  So far… no side effects.  My team is so motivated and organized, I was literally in treatment the day they told me the cancer was back.  On Friday, I will have a biopsy on the lymph nodes to determine the type of breast cancer and finalize the rest of our treatment plan.  Next Tuesday, they will put my PORT back in to receive chemotherapy.  The hope is to get one round in before we move to Tennessee on the 19th.  Somehow all the pieces are falling together like a puzzle and I’m so grateful for the ease of this transition.  My doctor’s at Vanderbilt are already scheduled and ready to hit the ground running.

Shew…… so believe it or not…. that was the easy part to tell.

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Still expanding the noodle

Now the harder part.  I don’t want to give anyone false expectations. Myself included.

The facts of my life lay as follows…

Right now, my disease is beyond science.  There is no cure.  There is only treatment.  But that does not mean there is no hope.   I hope that my body holds for 1… 5… 10 years and science finds me.   It’s not impossible.  It does happen.  I can fight and I can hold on and I can try everything.  And, of course, you know I’m a damned stubborn fool and someone will be dragging me kicking and screaming away from this life.

What do we hope for?  We can get to a state of NED (No evidence of Disease).  This doesn’t mean it’s gone.  It means that I’m living as healthy as I could possibly be.   The rest of my life will be a continuation of treatments until one of two things happen.  And honest to God, I’m okay with that.

There is a weird thing that happens to me when these times have fallen.  I become ever so grateful and overwhelmed about how privileged my life has been.  I take stock and realize that I’ve had a grand adventure of a life.  The relationships I’ve cultivated are so much deeper than most people have the chance to experience.  I’ve seen the world through so many eyes.  I’ve fallen hopelessly in love with MY perfect man.  I found out that the thing I wanted the most was something I swore I’d never have… the two tiniest perfect hearts to nurture.

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my happy place

So, if I could ask you for now…  Let me make dreams and hopes and plans because it isn’t over.  I don’t feel sick and I’m living life fuller in the last week than I have in the last year.  I want to talk to you and laugh and go out and be a part of everything.  Include me in your plans, and share your pains with me.  It is okay to be sad, just not for the reason you think.  I’m mourning nothing.  Don’t treat me like I’m dying because I’m really too busy making plans for living.

 

 

 

When Fearless Falters….

Have you ever been spinning out, so high on life, that you stop and think…. “Ain’t nothing slowing this train”?

I have to tell you 10 hours ago… That was me.  Happy.  Hospitalized but still happy.  You see, for a few weeks now I’ve been having major migraine type of spells. They got so bad I landed in the ER for the second time on Saturday afternoon.  And, I know you’re thinking “but Ashley you just said you were happy!” And I was…. until 10 hrs ago.

Tuesday morning, I woke up free of a headache for the first time in a long time.  I was excited that my doctors were finally figuring out what was going on inside my nugget. MOST importantly I was so happy that I was going to go home today.  See those tiny faces.   Smush those bitty cheeks.  Feel the giggles.

Today has come and gone and the only thing that has exited the building is morale.  You see… the cause of my pain was cancer.  My cancer is back.

Not only is my cancer back, it is in the lining of the fluid that holds your brain and spinal column. And now things are spinning.   They are spinning out of control.  Spinning out of reach.  Spinning out of hope.

I’ve already had my first radiation treatment.  It happened less than 8 hours after I was diagnosed. I have 9 more to go.  Did I mention my hair will start falling out by tomorrow? My fun, feisty hard won hair.   Then we start talking next steps.

Well my next step will be a move to Tennessee.  So we are shuffling, while arranging doctors and treatment plans, and insurance coverage.  I haven’t even gotten to leave the hospital and already I’m planning a major move.  I wish I could tell you, “What’s next?”

I know that I still have hope. I know I still have happiness. I’ll find it again but for now it’s all just spinning.

A Speed Bump. Not a Crash

Today, I fell in love. The man I’ve been waiting for, really. He gave me all I could ever dream of and more!  He won my heart with three little words. “Drink. Some. COFFEE.” I know. Swoon worthy!

Just kidding! Well not really but… Can you blame me?Coffee-Slut-Name-Tag

My new man crush just so happens to be my new cardiologist (Don’t worry Mister, he could be my grandfather!). A cardio oncologist to be very specific and the big difference is… he has the low down on the know how.  And the game just changed again.

Besides the reemergence of my old caffeinated self, he gave me back the gym.  He said, “Don’t set fitness goals, but you may do whatever your body says is okay”. Well hallelujah. Not only do I get caffeine but endorphins too? Slap me silly, cause I’m darn near dancing over here. And while allllll that is awesome (beyond a doubt), he gave me something so much better.

HOPE.

He looked me in the eye and said “This is a speed bump. Not a crash”.  Apparently people with my type of heart failure, with my causes and factors…. They heal.  And not just an abstract… you’ll live with this and be fine till you’re not.  THEY HEAL. Their heart returns to normal. All I have to do is play the game.  And lucky for me I’m as type A competitive as they come.  You want to play this game?  BRING. IT. ON!

Heart on my Sleeve… And in the Gutter

I have a confession.  Since my last post, I’ve been needing to tell you something but I wanted to make sure I had 100% of the facts before I put these two words out there.

HEART FAILURE.

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Ambulance Ride. Meh

Sounds terrifying right?! Well… it is and it isn’t as scary as it sounds.

But let’s rewind a bit first shall we?

When you first begin chemo, they rattle off a list of possible side effects and make you sign your life away as you nod along all numb and willing to not believe any of those things will happen to you.  You already got cancer… The universe owes you one right? Well… turns out the universe was sleeping that day. Heart Failure seems so much more threatening than cancer ever did. Because, Heart Failure means I’m at a high risk for sudden cardiac arrest (aka game over).

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When your dehydrated and they stick you 7 times

So what exactly do I got this time? (i.e. “Geez Ashley, Can’t you be normal for two seconds”)  Well, I have Ischemic Heart Failure due to a Left Bundle Branch block. Yeah, I know… FANCY! It basically means that chemo has damaged a nerve on the left side of my heart causing a deficient amount of function. Which nerve is that you ask? Oh just the one that tells your heart to beat.  The figures kind of tell the whole story. Pre-chemo my heart was functioning at 87% (waaaaaay above average) and now it’s operating at 20%. IMG_0634

Yeah. I know. I don’t know what to make of those numbers either but more importantly… Where do we go from here? Well, the next step is trying to improve function over the next few months with a course of medications and an extremely strict low sodium (no caffeine, meh) diet. I’m very hopeful that this will work. If not, the next step will be to place a pacemaker/defibrillator combo. It will simultaneously pump my heart and give me a shock should it decide to take a break. And if that doesn’t help…. I go on the transplant list. I guess technically I am already transplant eligible due to my function being so low but that is definitely not a discussion for today.

It seems weird not being able to “fight” this time.  It’s more of a sit pretty and see what happens. Oh, and you know. DON’T MOVE! I may go crazy from sitting still alone. But, I feel like the best thing I can do is just go on.  People keep trying to tell me not to do this or that, and I just feel like (within reason) I have to live my life exactly how I would be anyway. As I said, I hope it won’t be like this forever and I’ve already spent way too much time not living last year.  I’m over that chapter. I’m never going back.

In Fighting Shape

Tomorrow is our next surgery date, and today I’m bidding a sad adieu to my running shoes.

Even though I said a long emotional “see you later” to my fav treadmill on Saturday (I may have shed a few tears), I still had one more box to check before I hung up the sneakers.  For some reason, I decided that the ultimate “I’m back” statement would be running a mud-stricken, hill climbing, obstacle course.  So, this morning the husband drug my tushie out to the Regiment’s Downing Mile.

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“Let’s Kick Some Cancer Butt!”

First let me say… the Mister is a beast so he was all “Let me wear my body armor so I maybe get something out of it at your pace” and “Here, I’ll take photos of you while I’m waiting for you to get over the obstacles”.  What a pain in my rear right?!  But, still I made it!  We completed the course (in less than stellar time) then backtracked through it to complete it again.

I told him to tell people I did AWESOME, obviously. But the truth, of course, is…that I had some assists from Mr. Muscles  on the monkey bars (hello, I don’t even have full range of motion in my arms back yet!).  I also took some burpee penalties when the vertical walls got a little too high for this 5’5” gal.  Aaaaand…. I may have walked a bit especially when the mud got epically slick.  But dude… after the year I had, this feels like I’m back to fighting weight and ready to kick some more butt.

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#sweatybeastmode

So… what’s my head like going into surgery tomorrow?  Well “internal Ashley” is pretty on par doing cartwheels and heel kicks and singing dirty rap songs (in case you wondered what was usually going on up there).  But, I’m also sooooo sad.  The other surgeries didn’t feel this disappointing because I wasn’t in a frame of mind to really feel like I was being tied down to a bed and told not to move.  And… well I love to move and bounce and run and feel all around alive.

With that said, I’m going to ask a favor.  Instead of sending me well wishes tomorrow, show me how you are living it up.  Post it to my Facebook, tag me on instagram, text my phone (that will be in Mr’s capable hands).  Show me you chasing your kids (or grandkids), or all sweaty from dancing it out, or just taking your dog around the block.  I want to wake up to a whole lot of livin’.  Just do something that gets your heart racing for me because I am going to seriously miss the heck out of some fitness and I love you all so much that I want you to feel just as alive as I do heading into this surgery.

 

Life… in Remission

Ok guys. I know. Its been a long time. Six months long.

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IF you haven’t noticed… I’ve always got my hands a bit full. lol

I feel like that really bad friend (don’t pretend like you don’t know the one!), who reads your text message and POOF! forgets to write you back.  Its not that I didn’t hear you, and I tried to respond as I got messages but something really awesome has been happening…

Somewhere along the last six months (HOLY COW ITS BEEN SIX MONTHS?), cancer stopped being the biggest thing in my life. Does that mean the last few months hasn’t been chocked full of doctors and drugs and yada yada… Hell no! I’ve been straight hustling since we last talked. So lets get up to treatment speed.

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Ding Ding. No more radiation

Since we last spoke, I completed 33 rounds of bilateral radiation, which was of course not with out its complications.  I had a massive staph infection develop which almost resulted in hospitalization. Thank goodness it responded well to medication because… ain’t nobody got time for that! Radiation (and staph medication) wrapped up just before Thanksgiving.

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Entered 2016 with a ton of hair… Finally!

Next on the schedule was a total hysterectomy in early December. I won’t get nitty gritty but basically they took out all my lady parts.  With the BRCA1 gene, I decided that I was happy with my two tiny humans and committed to this radical option as a preventative measure. Anyone who knows me, knew there was a time when I didn’t want a single kiddo so the fact that I have two is pretty awesome. I didn’t think that this surgery would be too big of a deal. Until…after they basically sterilized me… my recovery was spent on the post-pardum floor…  Hello screaming, beautiful tiny infants and doors bedecked with happy wreaths. Thanks for the new mental anguish and my burning desire to have six children I was in no way prepared for…. Yeah. I’m glad to say that the hurt didn’t last, so I’m going to blame it on the heavy narcotics.

With the new year, came my next surgery and some new medication.  In order to give my chest a softer appearance, they fat grafted areas of my stomach into my chest. I know what you’re thinking, “Heck yes, lets redistribute the fat from my belly to my boobs!” But the truth is the results would be barely noticeable to anyone but me. It was totally worth it though. I went from feeling like “Spongebob Square Boobs” to something closer to round. The surgery was hardly painful and a quick recovery.  The new medication on the other hand….. Yeah. Not so much.

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Also had my last infusion during that time. YAY, no more “active” treatment!!!!

 

My oncologist has put me on a medication that I will be taking for the next ten years to help me stay in remission.  While I now feel like a normal functioning human, the first few months on this drug were legitimate hell.  The side effects that I personally was experiencing was insomnia, hot flashes, nausea, food aversion, disorientation, and all around just feeling like an idiot.  I was a little scared to be home with my children so needless to say… despite my ability to push through grad school in the fall, my plans for graduating with my masters got pushed one more semester. Wah Wah. Thank God (seriously) the effects only lasted until about the beginning of March. I’m back to my normal scatterbrained, loud mouthed , Big Mac eating self.

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Good thing I got this guy to hold my hand

Next up on the docket…. my LAT flap reconstruction surgery.  Click the link for more details but let’s just say they are taking muscles from my back and inserting them into my front. Yeah.  Guys, I’m scared.  I don’t GET scared about this sort of thing but my doc looked at me and said “This is going to hurt, it’s going to hurt REALLY bad”.  While I appreciate the heads up, the fact that he said it let’s me know it’s time to get serious. (Serious is my least favorite word just BTW).

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Found me a few “ride or die” gals to see me through… well… EVERYTHING!

So what now? Well on April 19th, I’ll have surgery. Then, we’ll have two more before we are done completely with reconstruction in a few months.  Did I mention we are trying to sell our house?… And moving to Kansas this summer?… And that I turned THIRTY? So, there is stress and distraction but there is also soo much excitement.  I’ve gotten back to the gym and I’m going to do an obstacle race with the hubs pre-surgery, you know, just to prove I’m still a badass, obviously!  And the house, well, I’m in with love this house but I love that someone else is going to love it too.  And the move… have I mentioned I get stir crazy if we live somewhere too long? And being thirty? GUYS, I SURVIVED TO THIRTY! And I’m seriously going to celebrate that as much as possible, surrounded by the amazing people who have helped us get through my 29th year with as much smiles and hugs and casseroles as they could muster! Thanks for being a part of the hardest, most challenging and life changing year of my life!

P.s. I should note that I’ve had three cancer screenings so far this year. STILL ALL CLEAR! Woot woot!

 

Be Still….

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“It means no boobies, for the rest of your dayssssss… It’s our cancer freeeee…. Philosophyyyyy…… Hakuna Ma-Tatas!” Yes… Yes, I am insane.

It has been more than two months since my last update. And there are some very good reasons for that. For the first half of this lost time, I was quite literally in the twilight zone. After six weeks hopped up on pain meds, I had to go back and re-read all your awesome messages not to mention my own (note to self: don’t dose and post!). Though, I did find my song rendition of Hakuna My-Tatas very enlightening a few hours post surgery.

Don't worry. I had tiny doctors the whole time.

Don’t worry. I had tiny doctors the whole time.

The second reason I haven’t posted is because, well… I didn’t want to bore you to death! I already gave you the good news. Surgery went amazing. The double mastectomy removed the little dying traces of cancer left in my body. (so close, chemo-induced remission!) So, we can assume that it is gone and staying gone. The first step to reconstruction (expansion) went well and I now have what could pass as a normal bosom while clothed. And today… I finally have more info to report.

It is very strange. I have felt more anxiety in the last two weeks than I have during this entire process. Before, I had cancer. We were busy fighting it. BOOM! Mission accomplished. It would appear to most that we are nearing the end of this little odyssey. Sad facts… we are only half way done and there is six months more to go. The anxiety comes from fighting tiny little cancer ghosts. The new mission has evolved into making sure that the cancer doesn’t come back.

Radiation also doesn't steal your hair. The difference 7 weeks makes....

Radiation also doesn’t steal your hair. The difference 7 weeks makes….

Last week (i.e. the cryptic thing I was waiting for), two things happened. First, I started radiation. Two of the six and a half weeks are now in the bag. So far, no side effects (yay). The daily trips to the cancer center are more of a time suck than a proverbial suck. Radiation, you are no chemo. Though, radiation has a one up on chemo in one aspect. Laying there for 30 minutes not moving a muscle, your mind wanders. I’m finding my busy mind is beyond existential. Shall we dissect the complexities of the universe every single morning? Super fun!

If only they stayed little....

If only they stayed little….

The other major event last week? I met with a genetic counselor. There in her tiny shoe box office, we outlined what it means to be BRCA1 positive (cancer gene). We discussed my risks (hello, the big one already happened), as well as the risks for my family. We now know from my results that one parent is BRCA1 positive. In all likeliness, it is my dad. That would be a positive thing because men have lower elevated risks than women with this sort of gene, not that I’m too happy about sharing this mutation with absolutely anyone else. Now the terrifying part, my sister and my children have a 50% chance of being gene carriers. And, because my girls are identical, if one is gene positive, the other is as well. I can’t even explain the fear associated with any of those three people having to experience an ounce of what I’ve been through.

The other part of our discussion, recurrence (the topic du jour these days). Because I am BRCA1 positive, my chances of having a secondary cancer are higher. I’m at elevated risk for ovarian cancer (prophylactic hysterectomy on the agenda), as well as secondary breast cancer, colon cancer, and melanoma. Add this to the fact that I had triple negative breast cancer, my recurrence rate is higher than most. (Queue insomnia)

But its not all bad news. Remember the new mission? Prevention. The multiple surgeries I am undergoing greatly decrease these statistics. Also, the amazing (may I say almost miraculous?) response the cancer had to chemo is a good indicator that no stray cells were left behind and it has not spread. Radiation is just the sunburnt flesh colored cherry on top. We are zapping the areas near and surrounding the cancer to make sure we are taking no chances.

I’m not sure the fear will ever truly subside. I find myself bargaining late night for just 16 more years, so that my death wouldn’t define my children’s story. But, that’s really foolish, not to mention morbid. Fear is one of the biggest long term side effects for cancer survivors, but I’m trying to find hope. Now is the time to “Be Still and Know…” It’s just not in my hands. I’m cancer-free. I’m a fighter. I’m standing in the sun. I’m going to go ahead and live my life and hope the shadows don’t follow me.

Stay in the sun....

Stay in the sun…. Always

My New “Four Letter” Word

Get ready because this post is going to be offensive. At least, it is to me.

I know many of you are waiting on an update (and I hear you I swear!).  Honestly, I’m waiting on something. As soon as I have it, you’ll know. (wow, that was unnecessarily cryptic).  But there is something that I feel I need to let go of into the universe, for my well-being and the happiness of those around me.

PINK. I know it’s a dirty word, right?! Oh you don’t think so? Well let me tell you, this October I have never found a word more offensive.  For those who don’t know, it is Breast Cancer AWARENESS month. And as a survivor, the pink is overwhelming. What I’m sure started out as an event with the best of intentions has become something of a mockery.  “Hey guys, to help support those with Breast Cancer let’s dress up and attend a fun event, or maybe we could Instagram a shot of the girls, maybe even buy all the pink merchandise we can find?”  This month has become nothing more than a sales pitch, a gimmick to make people feel like they are doing something.

The truth is…. you aren’t.  I’m not saying that the general population doesn’t have great intentions, it’s just that you have bought the hype about awareness. Can we just be honest for a minute, though? Who doesn’t know about Breast Cancer?  It’s not an under represented disease.  I find it almost unbelievable that I’m the only person any of you know that has had it.  We’ve all been touched by it, through a friend or family member.  It’s a deeply personal disease for so many.  So, do you think awareness promotions are helpful?  Do you know what awareness isn’t?  It is not prevention.  It does not mean a cure.  Most of all, awareness does not mean funded research.

The sad truth is that many of the charitable organizations supposed to be helping find a cure are doing far more to promote this “awareness” with fun runs and pink ribbon merchandise than making a difference (Susan G. Komen, I’m looking at you).  And the products you are buying… an imperceivable amount actually goes to these charities.  Who, again, use it to keep the brand going. So before you go buy your pink ribbon gear, think about how your money might be used in a better way.  I’ve linked a few awesome charities if you are looking for bang for that buck.

On a personal note, (and I know I don’t speak for all survivors) this month is horribly hard. The only awareness I have this month is of how every day I have to wake up and see another organization making a joke out of my plight (NFL now I’m looking at you).  I don’t want pink buckets of KFC, or head to toe gym gear.  I don’t need a pink ribbon mylar balloon (stupid, Publix).  I need people to think about how insensitive this parade of pink and over sexualized sayings make a girl who has lost so much feel.  I’m glad for you while you are waving around your proud pink bra. You get ’em, girl. Just remember, I haven’t been able to wear one since they amputated the second base you seem so desperate to “save”. But then again, I’d take “cancer free” over saving the tatas any day.

The Breast Cancer Research Foundation

Young Survival Coalition (helpful resource for women under 40)

MetaVivor (While 30% of cancer will metastasize (spread) only 2% of funding goes to it’s research)

Do you see that?

See that girl? The one laying there recovering? With the 5 o’clock shadow for hair and a drug induced coma?FullSizeRender

There is an endless party going in her dreams right now because… the pathology is in from the double mastectomy and lymph node removal.

Today (and technically a week ago) there was no evidence of cancer in any lymph nodes or left breast.  Chemo crushed that.  And the residual cancer cells (no longer even considered a tumor) in my right breast were completely wiped out from surgery.  There is no evidence of cancer.

Don’t pinch me. It’s no dream.  I’m cancer-free! I can’t believe it…. Today, I’m cancer-free.