Tag: young adult cancer

A Vacation from Cancer

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87WSyMSm

As featured on curetoday.com

Last week my husband and I traveled to the Dominican Republic for the vacation I’ve been craving since beginning chemotherapy last July. Long before we departed, a pact was made. The island was declared a cancer-free zone. There was to be no mention of the “c” word. Doing so was punishable by a contribution to the swear jar, changing the kitty litter for the rest of the year, or, the worst task of all, laundry.

We were quickly reminded what time of the year it was as the beach was packed with college students. At first, nothing made me feel more old and uncool than having a post-surgery chemo body, avoiding alcohol due to a regenerating liver and rising when our fraternity brother neighbors were coming in from a night of fun. Initially, I was a bit jealous and irritated, but I then decided the carefree and fun environment wasn’t such a bad thing. They were on spring break and I was on a cancer break.

For eight full days, we pretended as if it never happened. I read four books, napped under a palm tree, swam in the warm Caribbean Sea and tipped the beach waiter enough that I never saw the empty bottom of my drink. My husband played hours of beach volleyball and kept a diet of fresh tropical fruits. Both of us played and rested hard. It was absolutely glorious.

A break makes so much sense for cancer patients. Our bodies require rest and relaxation, especially when they’re recovering or fighting an intruder. Treatments, appointments, paperwork, recovering and medications alone are all exhausting. Throw in a job, family or anything else, and fatigue and stress are two things that are guaranteed. And what happens when we’re stressed and fatigued? Our immune system is lowered, leaving us more susceptible to disease. Workers are given vacation time to avoid burnout and recharge their batteries. Students are given breaks to rest their brains. If anyone needs or deserves some time off, it’s cancer patients and their families.

Now, I know everyone can’t take a vacation or a cancer break. When I was in treatment, I had several appointments a week, making a getaway impossible. And when I wasn’t at the hospital, I felt horrible. Also, cancer can devastate finances and the ability to earn income, making a trip low on the priority list compared to paying for treatment and living expenses. So, if these situations apply to you, let me pull out my magic wand, wave it around your current space and hereby declare you on a cancer-free island.

Now go make yourself a drink and do something fun for the next hour, day or week. Remember, no mention of the “c” word.  And most importantly, enjoy. You deserve and need it!

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My 2nd Act: Bluebird Cafe Performance

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I’m excited to share that I’ll be reading a personal essay on April 24th at the Bluebird Cafe as part of a show called, My 2nd Act: Survivor Stories from the Stage.

My 2nd Act: Survivor Stories from the Stage is a professionally produced stage show hosted at theaters around the country.  It’s a celebratory, inspiring and empowering event full of emotions – both for the survivors and non-survivors in the audience.

This week was our first table read and let me just say – OH! EM! GE! These women are on another level. Their stories include overcoming an unimaginable loss, housing the homeless, surviving a terriorist attack and a teenager, who, mark my words, is the next Oprah Winfrey. Oh, and all these ladies survived cancer too.

If you’d like to see the show live, details are below:
Sunday, April 24th at 10:30 a.m. and 1:30 p.m
Tickets are $32.49 can be purchased here. Sales benefit the Women’s Survivor Alliance.
The Bluebird Cafe is very intimate (i.e., small) and only 90 seats per show are available. The event will sell out, so if you’re interested, be sure to buy your tickets ASAP.

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Performing at the Bluebird Cafe is a huge honor. After the Grand Ole Opry and Ryman Auditorium, it is the most famous music venue here in Nashville. It’s where country artists test out songs they’ve written and aspiring musicians hope label reps are in the audience, as they often are. Garth Brooks and Taylor Swift were discovered there and anyone who’s anyone in country music has preformed on the stage at one time or another. So, I’m excited for the opportunity to share the stage not only with some unbelievable women survivors, but also some pretty famous footsteps. A complete history of the Bluebird Cafe can be found here.

If you’re not local or can’t make it, the show will be filmed and I’ll share the video as soon as it’s live.

 

Thanks!

Lessons Learned in Advocating During Your Cancer Treatment

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87WSyMSm

As featured on curetoday.com

“You have to be your own advocate.”

We’ve all heard it before, but when it comes down to it, being your own advocate means so much more than bringing a notebook to appointments, being knowledgeable about your disease and asking questions. When it comes to cancer, we’re not advocating for a bike lane on main street. We’re advocating for our families, happiness, feeling good and our lives.

I have always had a bold personality with no reservations about being a pain in the behind, so advocating for myself was a natural instinct. While I know there is still a lot to learn, I give partial credit to my advocating abilities for living today with no evidence of disease.

We all have different tactics to insure we’re receiving the best possible care for ourselves or our loved ones. Here are some of the important advocating lessons I’ve learned along the way:

I got many opinions. I know this goes without saying, but the more I talk to other survivors, the less I hear this actually done.  If I had stuck with the first and second opinions, I would not be feeling as good as I do today. I figured since I and my insurance company would be paying them a lot of money, it was my right, as a paying customer, to interview doctors as if they were applying for a job. The position was saving me.  Not only were their answers to my questions important, but I also considered their experience, personality, accessibility and whether they would be a good fit on Team Stacie. Also, I learned the hard way that liking a doctor, does not mean they’re right for my team. I wanted the best doctor for my disease, not a best friend.

I found a leader. I wanted the very best, which to me meant a doctor who lived and breathed the disease I was facing. Someone who leads clinical trials, knows the cutting edge treatments and can answer my questions without needing to look them up. Eventually, I found a specialist in a neighboring state with over 30 years of experience and patients who credited him as the reason they’re alive today. My doctor only works on neuroendocrine cancer and has not only championed treatments through FDA approvals, but is also up-to-date on the latest promising treatments in other countries. As the captain of Team Stacie, he develops the game plan and works with a local oncologist in my hometown.

I email my doctor. In today’s world, we shouldn’t rely on appointments and phone calls. I find when I call a doctor during the day, they are with patients or unavailable. Therefore, I send a email with a question or request for them to call me along with a list of what I’d like to discuss. If it’s quick and easy, I let them know they can respond via email and a phone call isn’t necessary. My specialist is older and not so email friendly, but his nurse is happy to play the middle man. Beware of a doctor who won’t provide you good access to them.

I’m on my team like white on rice. All healthcare professionals are busy people and I can see how patients slip through the cracks when doctors are working, on average, 60+ hours a week. However, my life depends on not slipping through the cracks, so I am respectfully stuck to my doctors hip like glue. I won’t hesitate to call, leave a voicemail and follow-up with an email, day after day. The result, my doctors know this and are always quick to return my call, if only to get me their off their back. When we do connect, I acknowledge their lack of time and express my sincere gratitude.

I learned my disease inside and out. Thanks to living in the information era, I connected with many patients affected by the same disease who shared their decades of wisdom. However, I do not believe my ability to Google overrides the knowledge in my team of highly trained medical professionals. While going through treatment, I leaned on my team and Google to teach me how to read lab results and reports. Before I am called into an exam room, I’d pull these up on my iPad to discuss with my doctor or nurse. I’ve even been known to impress a couple interns, nurses and assistants with my level of knowledge, which I take as a compliment.

I leaned on my closest allies. There were times when I was so sick, I just wanted to get out of the exam room and into the treatment room. During those days, I leaned on my husband to ask the questions and advocate on my behalf. I also have a friend who has been through her own health challenges and offered to become my legal advocate should the situation arise. Another possible line of defense I considered was a third party, trained health advocate. Before cancer, I wasn’t aware such an occupation existed.

Above all, I trust my gut. I have learned so much since my diagnosis, but one of the most important lessons is to trust my gut. More than ever before, I am in tune to what my instincts and body are saying. In the past, when I rebelled against these internal compasses, I was always sorry. I constantly check-in with how I’m feeling and talk to my body as if it were a separate entity. Deep down, I know what is best for me and it’s my job to communicate with my team.

Advocating for yourself can be exhausting, but your life depends on not letting your guard down for a moment. Be heavily, unstoppably and unapologetically engaged in your health and you could be rewarded with the best gift of all: life.

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