The Balancing Act

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It was only a few months ago that I was directed to a blog post that had been written about me. In that post the blogger said I need to move on with my life and stop writing about my experience. I needed to stop trying to get attention for something that happened years ago. I needed to move "the fu*k on" according to this fellow blogger. I didn't write about the post then because the blog was an immature example of the internet bullying that many of us have sadly experienced. However, I thought back to her post this weekend when I realized how out of the loop I am sometimes in the melanoma community.

While I try to update this blog from time to time I am much better these days at quickly uploading the latest melanoma article or a quote that hits home for me on Facebook, Twitter, or Instagram. I sometimes take a break from reading fellow warriors blogs. I don't always check my blog email the very next day. There are times I try to take a full fledged break--it doesn't last long--from Facebook because I need to live my life melanoma free for a while. It does not mean that I don't care about my fellow warriors or don't want to participate in all things melanoma; however, it takes an emotional toll to be too consumed every single day. This sounds incredibly selfish but I've had to be picky when it comes to what groups and events I want to be a part of because when I'm in, I'm fully in, and all of my emotions become invested. 

This isn't always a good thing for me.

I guess what hurt me the most about the post is that there was a time I was fully consumed by melanoma! Every single day I was writing about it. Every single day I was sharing my deepest fears with each and every melanoma warrior who would listen. Every single day I was living in fear instead of living. It took time, tears, encouragement and true effort to find balance.

Yet, sometimes I don't get the balance right. 

This weekend when I heard unwanted news about a dear friend from another friend, I realized maybe I've been too consumed by my own personal life these days. I have been so busy being a  live-in-soon-to-be-wife, a 50% full-time soon-to-be step mom, and a full time employee that I haven't been around enough to cheer on my friends. I felt like a Mole Mate failure.

There is no guidebook on how to balance life & cancer. I've just had to wing it, and sometimes, no matter which extreme I take, I fail.

How have you found balance in your life?

 

A True CoverGirl

This isn't melanoma related, so I hope you don't mind that I'm sharing this. I wanted to take a minute to express my sympathy to Talia's family. I have been trying to find something to say and all that pops in my head is about how unfair it is. Cancer doesn't discriminate.

Source

If you watched any of Talia's videos, you know what a special young lady she was. She was beautiful, intelligent, and brave. She faced cancer with a brave smile.

We could all learn a lesson from Talia.

Rest in peace, beautiful girl.

http://www.today.com/news/cancer-stricken-covergirl-talia-castellano-dies-13-6C10651620

Top 10 Skin Cancer Bloggers

This blog has never been about trying to gain attention for myself. It started as therapy, a way to cope with the intense fear that was burying me. It served as a tool to inform my friends and family of the roller coaster ride we were on. As many of you unfortunately know, having to repeat the same bad news over and over again starts to take its toll on you. I started this blog for selfish reasons: I wanted to make my life a little easier.

It wasn't long before I started using the blog to raise awareness about melanoma. I wanted people to see that melanoma isn't always the cut-it-out-and-you'll-be-fine type of cancer. It's sneaky, incurable, and fast. I wanted to share the daily struggles, the fears, the latest surgery scars and scan results. I wanted people to see that at only 23, I was paying for that tan I just had to have.

I never expected this blog to open so many opportunities for me to raise melanoma awareness. I'm just a Virginia gal who loves to write. I write from my heart, which sometimes pisses people off. I admit my fears. I share the latest news. I bitch. I cry. I live.

This blog has surprised me in many incredible ways.

Today, it surprised me yet again...

Today, Sharecare named the top 10 skin cancer bloggers. I came in at number 2! How I made this list, I don't have the slightest clue. According to the press release, "Officially known as "Social HealthMakers," these bloggers are among the most influential people in health and wellness on the Web, according to a ranking system based on more than 100 individual metrics."

The list is made up of mostly doctors; however, a few of my melanoma friends were recognized as well! Katie of Pretty in Pale and Susan of Jillian's Journey with Melanoma. I'm so proud of them. If you haven't checked out their blogs, do so. 

I want to thank all of you for reading my words, sharing my page, and continuing to follow me during these last 2 years. I wouldn't have made this list without you.

To read the full press release: http://www.marketwatch.com/story/sharecare-names-top-10-skin-cancer-bloggers-2013-07-09

To meet the other bloggers: http://www.sharecare.com/static/top-ten-social-healthmakers

A Letter to My Liver

Dear Liver, 

I know I've put you through some trying times. 


There was spring break in St. John: 

There was college:

 There was college graduation in Las Vegas:

There was that year after college...

The point is, I haven't been overly kind to you. 

How should I put it? I was kind of a party girl.

But times have changed, liver.

I behave.

I only indulge in adult beverages on rare occasions...

...such as a very rainy Saturday, NED results, or because there's an awesome band playing that I just have to see.

So, you see, I've matured.

Some.

But now, you seem to be paying me back for all those wild nights.

Elevated liver enzymes?

Why now?

The oncologist said it could be a side effect of Ipilimumab.

My sister would say it's Richmond catching back up to me.

Who knows?

I just ask, dear liver, that you treat me kindly as I do you...now.

Much love,

An Improved Chelsea




OK, now that that's off my chest..

I came home today after work with the phone call from my doctor weighing heavily on my mind. When I went in for blood work this morning I didn't think anything of it. I never do. After being in the clinical trial for 2 years and 2 months I'm used to going to the lab a few weeks after my infusions for routine blood work. I never have an issue. When I got back to my desk today after lunch I checked my cell phone and saw I had a missed call from New York. Only one person calls me from New York: My oncologist (or his super wonderful assistant! Hi Pam!)

When I heard his voice on my voicemail, I knew it was about my blood work. He never calls unless it's to tell me a result or to reassure me that everything is OK. He's all about trying to convince his patients to let him do the worrying. (I know we all still continue to worry, but it sure is nice knowing we have a doctor worrying along with us.)  Anyway, he told me my liver enzymes are elevated. He asked if I've had alcohol lately, if I have hepatitis, and if I've been feeling OK. I answered no to the first two questions, and explained I was really sick last week. He told me that elevated liver enzymes can be a side effect of the drug, and that while we do not know if I'm getting the drug, this is a good indicator that I am. I will go back a week from today and redo the blood work. If my numbers are still at this level or higher, he said we will further investigate. I don't have the slightest clue what that means. I didn't even ask him because I think I was subconsciously hoping I won't need to know.

When I got home I remembered that the research nurse had given me updated paperwork when I was in their office 3 weeks ago. I'm glad I kept it. It says: "about 8-37% of patients have developed serious problems with the liver as a result of ipilimumab treatment. Inflammation of the liver due to ipilimumab can range from mild or moderate (around 1%) to severe (around 7%) and in a very few cases, it can be life threatening. Acute liver failure resulting in death has occurred in less than 1% of patients. However, most severe cases have been successfully treated by stopping ipilimumab treatment and by administering anti-inflammatory medications such as steroids. You should contact your doctor if you experience symptoms that may be associated with problems of the liver that include fatigue, weakness, vomiting, nausea, yellow discoloration of the eye or the skin or abdominal pain. More frequent blood draws and a liver biopsy may be required if you develop serious liver abnormalities."

Apparently this isn't the first time that they have run into this type of situation. It just seems so odd to me that I'm just now experiencing it 2 years and 2 months after beginning the trial! I know they say ipi has a delayed reaction, but goodness! It's a double edged sword though; these results indicate I really am getting the drug and not the placebo. I want to keep getting the drug; however, I don't want to damage my liver!

Hopefully I will go back on Monday and my results will be totally back in the normal range. If not, I know my doctor will find the best and quickest way to make sure they get back to normal. I trust him.

(Again, to my liver, I'm sorry for all of those parties...I sure had a blast!)