My Unicorn Life

If I didn’t already know I was special, I for sure know that now. After meeting with the Genetic Counselor the other day I found out that I do not have any mutations in the BRCA1 or BRCA2 genes. For those that don’t know, mutations in these two genes increase a woman’s risk of breast cancer. It came as a bit of a surprise, only because my oncologist was SO sure that would be the case – being 27 with no history of breast cancer in the family. Alas, I am a unicorn. I have no explanation.

They did find some things of interest – I have a “variant” in a gene called TP53, which is currently being studied for its role/link in young cancer and bone cancer (I have mets to the bone for those that do not know). Since the research is still new, this doesn’t necessarily mean anything right now, but potentially could down the line. The cool thing about being a purple unicorn is that my DNA is getting some special attention – being studied and further tested by the HCP (Hereditary Cancer Program) looking at MORE of my genes to seek out any other mutations or anomalies (yay more blood work/saliva samples)…though I would take normal DNA over being the subject of study any day 😉

Next up on the docket for Wednesday was a blood test and biopsy to get me started with the POG study. If you don’t know about this study I suggest you read up on it, it’s pretty interesting stuff.

Since I was slotted in due to a last minute cancellation, no one had any requisitions for me for bloodwork or the biopsy…typical haha. So up and down the cancer agency I went, having people track down the correct people to get the show on the road. Blood work: Check. Next up, biopsy. My diagnostic biopsy experience was awful, I was not comfortable, I was nervous, they didn’t freeze me properly and took a total of 10 samples including fine needle aspiration of the lymph node.

This time I was slightly more prepared, I popped some Ativan to relax a bit, and knew to tell them to freeze me properly. So, I’m lying on the table, exposed, with this new grad and her ultrasound scanning away…scanning….scanning…*puzzled look* “I’m going to go get the radiologist to take a look”

“okay…” *mildly begins freaking out*

The radiologist comes in and she was fantastic, but as she is scanning she tells me that she “thinks” she has found the area where the previous biopsy was done, but the mass is so small now that she’s unsure she can get a good biopsy. She does a bit more scanning and thinking and looking at the previous scans before telling me the biopsy is now going to have to wait until after my last round of chemo and PET scan in order for it to be targeted. The concern being that as soon as they inject the anesthetic she would lose view of the mass on the ultrasound and would not get any of the cancer DNA and I’d have to come back, which neither of us want (probably me more so than her :P)

Obviously I have mixed emotions about that! No biopsy is a win, plus the treatments are working…BUT it means I have to wait even longer for the POG study…

 

Image result for unicorns are real

Advertisements

She Who Is Brave Is Free

I have been absent, I know, no updates…I will spare you from the details because it is completely IRRELEVANT to this post. However, I will tell you it was not great news, things have changed, the plan is different now – but I am handling it and I have an amazing!!!!!!!!!!!!!!!!!!!!!!! support group around me. I cannot stress how f@!*ing in awe I am of how the people I have in my life are pure gold (did I mention they’re amazing?)

This blog post is about bravery. Something so important to me that I had it tattooed on my body! I do not solely mean in terms of facing a difficult situation (in my case think a cement wall infinity feet high and infinity feet deep and I need to get to the other side), but how every single person needs to embrace the concept of bravery, and to live it, every goddamn day. Specifically, I am going to be talking about relationships, and dating (yuck!)

Everyone who knows me well knows that I find dating to be downright awful, it is awkward, uncomfortable, and my guard is always up. Or was. I don’t really know anymore – I’ll let you know when I figure that out. Dating is shit, and if you say you love it, I don’t know what planet you’re from – but can I visit? Can I study your weird culture? I need to understand why meeting a perfect stranger, feeling like you’re going to vomit and that you’re being interrogated or interviewed is a pleasant experience. ENLIGHTEN ME!!!

Joking aside, when people say that a life changing event opens your eyes and makes your priorities fall into line like perfectly stacked dominoes tiles – they were not bloody kidding.

Here is where I’m going to tell you how being brave isn’t just about facing crappy times and soldiering through, it’s about being brave every day – every time you’re confronted with an uncomfortable situation. In relationships (even friendships) that can be quite often, and in dating it’s multiplied.

#1 most important thing is to be brave enough to cut the toxic people out of your life, even if you love them, if you feel like you cannot live without them. They are toxic. They are SHIT. You are so much better off without them. It took me a long time to cut certain people out, and when this diagnosis came along some of them removed themselves from my life of their own volition. It hurt, it really hurt – I thought they cared about me, loved me, and were going to be my rock. I was SO SO wrong. I got over it though, I realized something – I have amazing friends, family, and there is so much love in my life that is a million times more pure than whatever that was.

#2 be brave enough to stand up for yourself. Don’t like something that’s happening in your relationship? Is your partner/friend/family member behaving or saying things that upset you and get you down? Tell them. Simple as that (jk, maybe have some tact). There are endless courses and counselors who specialize in helping people communicate for a reason – it works! Surprise, surprise we can’t read each others minds yet – maybe one day 😉

#3 be brave enough to tell people how you feel. Life is so short, too short, and way too short to hold your cards and emotions to your chest and not let someone know. People are terrified of rejection, and I get it, it stings – but only for a moment, trust me. Our egos are so inflated these days that we can’t handle it when someone doesn’t feel the same way about us. So what? Get rejected, own it, embrace it, tell yourself that person isn’t the one for you and maybe you are better off friends. Imagine if you say something and you got a positive response? Wouldn’t that be something! So make the grand gestures, lay it all out, wear your heart on your sleeve, tell people you appreciate them, you like them, you love them, that you think they have a bangin’ bod, laugh, hug, cry, love. Do it ALL.

#4 this is my last one. Be brave enough to know your own worth, know what’s REALLY important. I get that when our lives are “normal” we get sucked into the social norms – go to school, get your degree, get a job, get married, buy a house, have kids, retire etc. Again, that’s the social norm, it’s how we have been programmed by our society – but it doesn’t mean it’s right or the only way. The guy with the nice car and good job, but he is dull and boring? Ugh no. Please – give me someone who will dance in the kitchen, take spontaneous trips, geek out, takes an interest in me, and who isn’t afraid of making a fool of themselves. Someone that knows what is important, as my friend Lisa says “the connections we have with other people are the only things that fucking matter,” give me that. Give me a genuine person over a house and car any day. I’m brave enough to know I’m worth someone like that – and you should be too!

FB_IMG_1492263169103.jpg

 

Nothing but LOVE to you all, positive vibes only xoxo,
Karen