Spotlight: Caroline

Spotlight: Caroline Blog: Caroline's Breast Cancer Blog Diagnosis: Breast Cancer, June 2007 Blogging since: June 2007 Work: Marketing communications, working for both big and small companies. Currently contracting and working part time at a local community education program. Volunteer: At a professional organization and three health-related organizations.

What made you start your blog?

I didn’t want to take a million phone calls from well-meaning friends and relatives wanting me to go through all the details of diagnosis and treatment with them. The blog lets me control the information I share and when I share it. If I’m not ready, I can hold back news a few days. Or if I don’t want to share something verbally, I can put it in the blog. The only people I proactively share news or changes with are my husband and parents.

Who do you admire in the breast cancer community?

I am not sure I can name any one person. I think I admire the people who don’t let their diagnosis take over their lives. They’re in charge of their treatment and proactive instead of negatively reactive.

What do you wish someone had told you when you were first diagnosed?

How to find more information about my diagnosis, and how to manage the subsequent information overload. Also, the stress you feel when you have a new diagnosis but don’t yet have a treatment plan in place is horrible. I wish that could have been managed better. Maybe the first diagnosis needs to include a referral to a therapist.

What is your favorite health-related books and movies?

I highly recommend Kris Carr’s documentary, Crazy Sexy Cancer. Faced with a horrible diagnosis, she turned her life around to make it better. She has a great outlook on life. She also has a blog and Web community. I also really like I Am Not My Breast Cancer by Ruth Peltason. She put together a collection of thoughts from many different breast cancer patients that covers the range of emotions you go through. For regular reference, I like Dr. Susan Love’s Breast Book and Dr David Chan’s Breast Cancer: Real Questions, Real Answers.

Where do you turn for support?

Friends and family who have been through a major illness or cancer themselves. One friend had ovarian cancer in her early twenties, and she just turned 50. I could call her up and say, “chemo really sucks,” and she knew exactly what I meant. Another had open heart surgery a few years back, and was incredibly sympathetic when I was complaining about my drain after surgery, because he had had them himself. I surround myself with people who can help me through this. I go to a weekly support group and see a therapist regularly. Another support group for newly diagnosed patients stopped meeting formally before the holidays, but now meets monthly for coffee.

Online, I get support from Susan G. Komen for the Cure, as well as Crazy Sexy Life. I read many people’s blogs and stories and its great to be able to ask questions and give support to others. I now have online friends who I’ve never met.

But my biggest supporter is my husband. He’s come to every doctor’s appointment, every chemo session (16 in all), and several radiation treatments. He’s changed bandages and drained drains, made me special food, done laundry, cooked, cleaned and wiped away thousands of tears.

How have your personal relationships changed as your condition has changed?
Any cancer patient/survivor (insert favorite term here) will tell you countless stories of friends and family members who’ve dropped off the face of the earth. Many people still think of cancer as the “Big C” – it intimidates them. This is very difficult for many of us who then wonder where all our friends have gone.

Also, upon hearing about other people’s diagnoses, I used to be much more blasé. I wouldn’t rush to call and offer sympathy or support. What I learned from my first experience – I was diagnosed with thyroid cancer in college – is that if you tell people about it, they just don’t know how to treat you. Then they end up dropping you like hot potato or pretending you’re not sick.

But the thing is, we want to be treated just as before – we aren’t dead! We want to know about jobs and boyfriends, travels, shopping - just about anything relating to a normal life. We might not feel up to going out much while in treatment, but we’re still here.

Can you tell us more about the thyroid cancer diagnosis?

In my freshman year of college, I’d had strep several times. The nurse in the college infirmary was concerned, so she urged me to see my doctor when I went home for the summer. So I had lots of tests, surgery and then the remaining thyroid was dissolved with radioactive iodine. It was a stage 0 diagnosis but a definite shake up in my life. It put me back at school a week late, which my friends noticed, and unable to talk, since the surgery had temporarily damaged my vocal cords. Even then I noticed some friends backing away. Over the years, I’ve learned that with some people, you just have to keep quiet about your medical history.

What’s the worst thing people say to you?

“You’ll be fine.” Well, eff that. No I won’t. My life has been changed irrevocably and permanently. Also, no cancer patient wants to hear what worked for someone else, particularly when it isn’t relevant, like, “My neighbor’s cousin’s nephew’s co-worker had a brain tumor and this is what his treatment was so it must be what’ll work for your breast cancer.”

Has breast cancer changed your career path?

Absolutely. I was laid off from my job two weeks prior to my diagnosis. I was trying to look for a full time job and continued to job hunt through two surgeries. Once I started chemo, I wasn’t in any shape to work. I’ve been working part time for the past year consulting for a local community education program, and doing some volunteer work. Now I’m trying to land a permanent part time job so I can keep up my consulting and volunteer work.

What kind of volunteer work?

I’ve had the opportunity to work for several organizations – helping on a local Tour de Cure event for the American Diabetes Association, helping the Center for Cancer Support and Education with some of their events, and helping the New England Direct Marketing Association with their annual conference. I recently volunteered with the Susan G. Komen Foundation but haven’t started yet.

I’ve adjusted my priorities so I can help others. Even helping just a little makes me feel better. Volunteers are greatly underappreciated.

What are your favorite resources for medical information?

For breast cancer:

www.breastcancer.org – Best source for the latest information and research on breast cancer. Includes easy to understand information on treatment options, plans and side effects.

www.komen.org – Good collection of information on breast cancer. Downloadable pdfs of questions to ask your different doctors very active message boards.

For cancer in general:

www.cancer.org – The American Cancer Society site provides easy to understand information on every type of cancer.

www.cancer.gov – The National Cancer Institute site is a bit complicated to follow, but is full of useful statistics.

For chemotherapy:

www.chemocare.com – Here’s a great list of chemo drugs that what to expect and possible side effects.

For general health issues:

www.webmd.com – The grand daddy of medical information. Everything from a bunion to a brain tumor is covered.

www.mayoclinic.com and www.lahey.org – Both these hospital sites provide lots of info about conditions and procedures.

Learn more about Caroline.

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