Sunday, March 29, 2015

The one where I can actually compare myself to Angelina Jolie

Remember a few years ago when the interwebs were in an uproar when they found out that Angelina Jolie had a preventative double-mastectomy? And how they erupted again recently when they found out she had her ovaries and Fallopian tubes removes? Seriously, there was even a Buzzfeed article about it. (You know it's a hot topic when Buzzfeed covers it - http://www.buzzfeed.com/carolynkylstra/brca-genes-and-cancer)

As you might have heard, Angelina Jolie carries the BRCA1 gene. So do I. Because of this genetic marker we are predisposed to getting breast cancer at early ages and it reoccurring later on as ovarian cancer. (Guys, this is the one and only time in my life where I will legitimately be able to compare myself to Angelina so I'm going to go ahead and do that. Because I can. Finally.)

 


A few people have asked me how I feel about Ms. Jolie's op-ed pieces discussing her very personal and monumental life choices. Have I read the articles? Do they bother me? And so on...

I have read the pieces. No, they do not bother me. Honestly, I am so pleased that each time she has had a major procedure related to her BRCA1 genes, she has made sure that the public is informed of her "why". Women need to know about these things to be better informed and to have appropriate conversations with their doctors. She has the fame and the power to make these things newsworthy. Her voice is a much more powerful vehicle than mine. I can tell all of my friends and family about breast self exams and talking with their doctors -- but she can capture the attention of a nation. Good for her for recognizing that and doing something about it.

For some folks I'm sure it seems extreme to have a double-mastectomy followed by having your ovaries and Fallopian tubes removed as preventative measures. I mean, a double-mastectomy is an amputation which is a big deal. (Just because it's not an arm or a leg, doesn't mean it's not an amputation.) Removing your ovaries means no more babies and bringing on menopause. A BIG DEAL. A big deal based on statistics. A chance that you test positive for the BRCA1 gene. Then more percentages about your likelihood of getting breast cancer. Then even more statistics about the likelihood of the cancer reoccurring in your ovaries. But remember, we're talking about cancer. How comfortable would you be gambling on CANCER? I gambled in my 20's and lost.

The difference between Angelina Jolie and myself (as if there was just one) is that she has the financial freedom to make these decisions with, I'm guessing, no real monetary repercussions. I knew the same facts as her and did not make the same decisions. I knew that I could test positive for the BRCA1 gene, but in my early 20's with a young family, couldn't justify the cost of the genetic testing. (If your insurance doesn't cover the cost, just plan on paying an amount that could get up to $4,000.) I couldn't justify the time off work or the cost of a double-mastectomy and the reconstructive surgery that would follow. Unfortunately, the harsh reality for most women in this situation is that money is a factor in their decision-making.

Also, I need to be honest here and tell you that there's more to the story than money. I couldn't handle losing parts of my body on a chance. It scared me. I thought I would be less of a woman. Less me. Right, wrong, or somewhere in between - I made the decision to wait and see what happened. I gambled on the odds falling in my favor and it didn't quite work out the way I hoped. The lesson I learned here is that I will still never judge a woman's decision because it's her call and I can clearly understand both sides of that coin. Probably more clearly than most.

So what does all of this mean? What is the point of this post? The point is - - ladies need to be aware of their family medical history. They need to be informed. They need to have difficult conversations with their doctors. They need to do self exams regularly. No matter what decision they make - - they simply need to be aware. Thanks to our fascination with famous folks, woman like Angelina Jolie can bring these conversations to the masses and can get websites like Buzzfeed (who appeal to a younger demographic) posting information about BRCA1 genes.

Also, did you really think I would post without my standard #CheckYourself message? Next time you go to the doctor, see if they have these available. Take one home. Use it.

 

Sunday, March 8, 2015

The one with/out the hair.

So, I  finished chemo round #2 and this is the part where my hair goes buh-bye.

I was ready, mostly. I couldn't even touch my head without the hair falling out. Basically, shedding like a golden retriever. Now, I had previously purchased two beanie/stocking hat things, some bandannas, and a wig in preparation for this. The wig is something that I have yet to fully embrace but have it like a security blanket. Who knows, maybe I'll never wear it. Maybe I'll wear it everyday. I think I need to figure out if covering my bald head is more for me, or more for the people around me. I feel mostly okay with my new look, but will it eventually freak out my neighbors? I dunno. As of right now, I cannot stop thinking about the possibility of losing my eyelashes. How in the hell am I going to put on eyeliner without blinding myself? I use my eyelashes as a guideline and guardrail to avoid that! Ugh. And drawing on eyebrows? I do not know how to do that, and if you do it wrong, it doesn't just look "off" it looks horrifying. Oh well. We'll worry about that when and if. When and if, folks.

At any rate, on Thursday night around 8:30 p.m. I just up and decided that it was time to shave my head. The hair wasn't going to stop falling out and I couldn't handle the shedding any more. Believe it or not, the hair falling out made me more self-conscious than the idea of being bald.

You can see here where my hair is just gone. 

Why wouldn't we take an awkward photo mid-shave? I look a little like Roger Klotz from "Doug" in this photo. Google it if you don't know what I'm talking about. It's funny, I promise. 

Here's the hubs shaving my head. Now we have the same haircut. 

First look in the mirror. 

Sounds odd, but this is a face of relief. So stressful to constantly worry about your hair falling out in big ol' chunks.


Well, now that the hard part is done, I ordered some new earrings since my ears are on full display and I've been looking online at different eye makeup styles. I mean, might as well make the most of the situation, right? It's not so bad. One less thing to worry about and it certainly saves time in the shower. (...and now I know that I don't have any weird bumps or dents in my head. Yup. I've got a good shaped dome.)

...and one with a fancy chapeau. 
So yeah. That's what's new.


Sunday, March 1, 2015

The one where I am so stupidly grateful.

For those of you following along at home, here's an update.

I made it through my first round of chemo just fine. It was a little dicey for a few hours with a nausea that was pretty intense, but nothing a few pills couldn't fix. The day after was pretty much a blur. (I slept through most of it.) Then each day after that got progressively better and I felt like Jenn again within 3-4 days. So, now I know what that's like and am prepared for the next one. As of right now, the hardest part for me is walking into the infusion room and being the youngest one in there. It's a weird feeling to see pity in the eyes of other folks who are on the same damned boat as me. Just another reminder that even us younger folks need to be diligent in maintaining our health, regularly getting check ups, doing self exams (breast and testicular), and so on.

Just a gentle reminder to the ladies to go ahead and give yourself a breast exam. DO IT.
image found on the internet - colleenclarkart.tumblr - Thanks Colleen Clark!

Also, can I just say that my litte Sigourney Weaver port is a frickin' godsend!! Honestly, I was so squicked out by the idea of having that device inserted into my body, but now I cannot be more relieved that I have it. Thanks, Sigourney. The veins in my hands and arms are so thankful. You can see in the pic below the little "scar" mark from where they put in Sigourney, and then the little white circle is actually like a capped needle that just pops on top of my port and the meds go in! Pretty slick (and painless) deal.



Now here's the thing. I've had some time to sit and stew and ponder and think. What I've come to know with 100% certainty is that my support system is as wide as it is deep and I am just not sure if I could be any more grateful, thankful, lucky, and happy to have you all. From the funny text messages to the Facebook PMs, to the IM's, the dinners you have cooked, the cards you have sent, and the rage you have expressed on behalf of my situation is almost overwhelming. I don't know that this process will ever be easy, but you all make it bearable. Thank you, thank you, thank you x 1,000. To know that you're there for me, Ben, and Sadie is such a relief and a comfort. I'm doing my very best to make sure that I am passing along all of the light and love, however I can. We've made cookies for the staff at the cancer center, and I'm planning on bringing the nurses donuts on chemo day. Gotta keep the goodness going.

Well, I don't want to sit at the computer any longer today. It's a lovely day and I feel good. I'm going to clean my house (never thought I'd be excited to do that, but here we are) and nag my kid about homework and practicing her guitar (again, never thought I'd be thrilled to do that either).



Saturday, February 21, 2015

The One About Cancer.

Friends, there really isn't an easy way to bring this up. On Saturday, January 28th, 2015 I found two lumps as part of a routine self breast exam. One lump in each breast. For a minute I thought I was going to be a billionaire because I had found the insta-cure to tiny boobs. I had found the miracle plank workout that grew boob muscles. JACKPOT! But then reality hit and I remembered that my mom, grandma, and my two aunts have all battled breast cancer.

Guys, it's true. I have breast cancer. I'm 32 years old and I definitely have breast cancer. I am 100% convinced that I saved my life by doing regular self breast exams. I have an aggressively growing cancer (cells growing at a rate of 82%). Had I not gone immediately to the doctor after discovering my lumps, I might not be in early stages of cancer. I CANNOT STRESS HOW IMPORTANT IT IS FOR EVERY WOMAN TO DO REGULAR SELF BREAST EXAMS!! Don't know how? No big deal. Go here and the American Cancer Society will tell you how: http://goo.gl/hxgtwb  Seriously. You don't need insurance or an appointment, just do it in the shower, or when you lay down for bed. The best defense is good offense. Or should I say #TheBreastDefenseIsGoodOffense. Defend your boobs, ladies. If you don't want to perform the self exam yourself, ask your husband/wife/partner/friend/someone you trust.

So anyway, modern medicine has come a long long way. And thank goodness because my terrifying fear of needles was going to pose a large large problem. So, let me introduce you to Sigourney Weaver. She's my tiny little alien inside my body. Sigourney is a fancy port that stays under my skin and allows the best nurses ever (for real, my nurses are amazing) to do blood draws and administer my chemo just by plugging into my port.
Sigourney Weaver IRL

What Sigourney looks like under my skin. 

So, I've got great doctors, amazing nurses, the cancer center staff are unbelievable (yes, we've made them cookies already). I've got love, support, family, friends, insurance, and good anti-nausea meds. I have also got about another week or two with my hair. So, I went ahead and chopped it early so that I could donate to Locks of Love. (If you have 10" of hair that you'd like to donate, check out Locks of Love.)
Before "the cut"
After "the cut"

Then I went to play around with wigs. Still not sure how I feel about the wig. It's quite an investment. I felt better about some options as opposed to others:
Very librarian chic. I kind of like this one. Makes me want to say words like "Money Penny". 
Maybe a little too Pulp Fiction?
Okay, okay, okay. I think that's enough heavy stuff for now. Is it scary? Yes. Am I determined? Yes. Will I ever be alone in this fight? No. And now the big question. The thing everybody wants to know...how can I help? What Can I Do? Honestly, you can make sure that every single woman you love checks her breasts regularly for lumps. It can save her life. 

Monday, February 2, 2015

Music. More than just boogie down tunes.

If you know me at all, you know that I love music. I will shush you in the truck when a good song comes on. I will dance in any Target or grocery store or waiting room if one of my jams comes over the speakers. I have very specific play-lists for happy days, crappy days, melancholy days, etc. Music matters to me in a way that is hard to express.

BUT, I have finally found a way to explain it. Sort of. The look on the guy's face at 4:30 in the video below is everything. It's love, it's hope, it's faith, it's happiness...all of it. That's what music does.



Whether you are playing music or listening to music, it can be whatever you need it to be. Music never asks you "why" and it doesn't ask for anything in return. (Well, it might ask for $0.99 if you want to download it...)

Also, this is what writing does for me. It lets me feel whatever I need to feel. It lets me get out whatever I've been harboring inside. It doesn't ask me why and it doesn't ask for anything in return. So, on that note, I'm going to make a pot of coffee, hit "play" on a meticulously chosen list of tunes, sit in my favorite chair, open up my notebook, and write..and write, and write, and write, until I get it all out. Then I'll sing and dance...and dance, and dance, and sing until I fill it back up.