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

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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)