Wednesday, April 1, 2015

How does Angelina Jolie's efforts to prevent cancer affect this myeloma warrior?

An article I wrote for www.myelomacrowd.org.

The Angelina Effect On Fighting Cancer & Sharing Your Tale

BY LIZZY SMITH

For the second time, Angelina Jolie, actress, director, writer, humanitarian, wife and mother, is opting for surgery as a preventative measure against cancer. She announced her decision in via the New York Times, explaining that she had her ovaries and Fallopian tubes removed to prevent ovarian cancer. Just two years prior, she had bilateral mastectomies to prevent breast cancer. Angelina’s decision to go public, she explained, was to inform women of their options.

The dialog has begun on cancer prevention and the lengths one may go to avoid it. But what impact does Angelina and her going public, have on multiple myeloma patients? Or at least this myeloma patient, anyway.

First, while there is no preventative surgery to ward off myeloma, there is a whole range of mindsets on how far one might go to fight their cancer. From “all the way” to “quality of life” and everything in between. So how hard will we fight to save our own life?

Second, how and when do we go public with our diagnosis, treatment and progress?

And, lastly, when we do share such private information with others, what should we expect from them?

Fighting cancer isn’t easy. The side effects of drugs, treatments and surgery can be incredibly difficult. Upset stomachs and hair loss are just the beginning. Some have the mental, emotional and physical strength to fight hard. But to do that, one also needs a good support system and the dollars required to pay for staggering out-of-pocket costs and travel expenses often required to research and select best options. This approach is not for everyone.

I often hear from cancer warriors that have decided to opt for quality of life. Many have already decided that there are certain procedures that they simply wouldn’t do if it came down to it. Quality of life is more important, some say.

I have taken the opposite approach. I have young children and I love living. From Day 1 of my diagnosis, I decided that I would fight hard and win, and spit on cancer and stomp on it. I suppose I’m lucky that I don’t have depression. It’s an emotion I literally know nothing about. When I get upset or afraid, I do something fun to bring my energy back to center. I go hang gliding or go on a trip or do anything to distract myself. Sound overly-simplistic? It’s not, but it works for me.

iguazu falls

A few weeks ago, I was in Iguazu Falls, Argentina, home of the longest waterfalls in the world. It was one of the most amazing things I’ve ever seen. As part of the trip, I got on a boat with about 30 other tourists and we went under those falls without any protection minus life jackets. Being pounded by the insane force of the water was exhilarating. I literally have never felt anything like it and for the several minutes we were under the falls, I laughed and screamed and, well, LIVED. I didn’t think about myeloma, cancer, side effects or anything. In fact, it wasn’t until that evening when I had to pull out my Revlimid and Lovenox injectable that I remembered that I’m a myeloma survivor. And on that entire trip, I barely thought about cancer at all. Mental breaks and unique experiences give me the strength to press forward. I’m a fighter and I’ll keep my boxing gloves on. Is everyone like me? Of course not but I recommend that on those tough days, you try doing something far outside your comfort zone that will bring you joy. It helps immensely. Get out, breathe, live.

The next question is who and when do we share our diagnosis with? At the beginning, I told almost no one. I had to tell my then-husband (who I left the day I was diagnosed), who then told all kinds of people. I was angry– it wasn’t his story to tell, it was MINE. I also told my parents, employer, and a few close friends. Notably, I did not tell my children, almost no one else in my family, and I certainly didn’t go and announce it on Facebook. I had spent so much time in my prior life portraying an image of perfection– immaculate home, great job, awesome kids, beautiful dogs, and a happy marriage. To all of a sudden announce that it was all a sham and I had CANCER was just too much. I also knew inside that I was going to win this challenge and I didn’t need to see pity, doubt or sorrow in anyone’s eyes. When I lost my hair, I never went out without my wig. It was important to me to look well because, well, if I didn’t look sick, certainly I couldn’t be “that sick.” It was my way of emotionally coping and winning.

On the flip side, a good friend was diagnosed with stage III colon cancer just a month after I was diagnosed and she went on Facebook and told everyone. Which one of us was right? We both were. Sharing this news is your decision, on your terms. Never second guess what you decide. It took me a solid year before I felt comfortable starting a blog and sharing these details with anyone. It was time, it was the right decision for me.

These days, I share my myeloma journey openly. Advocacy and awareness is my life’s passion. To the extent that I can help others with my story, I will continue doing so.

As part of our journey, it is also imperative that we tell others around us when we’re having a bad day or we need help. Just a few days ago, I had to remind my daughter that I was tired because I was having a Dex crash day. I think she forgot that I was taking any medications because she simply doesn’t see it.

And, lastly, as one who may be a caregiver, supporter, family or friend of someone with cancer, what should you do? Listen, support, love. If you’re able, take the cancer survivor’s children for an afternoon to give her a rest. Take a hot dinner over to the family. Offer to drive to him to a doctor’s appointment. Get him out of the house to do something fun. Know that we cancer survivors aren’t “normal.” We struggle with physical and emotional fatigue. We can be really cranky. And we have limitations that are real.

The Angelina Effect on me is huge. I’m going to fight with everything I have. And I’ve decide to share my journey and advocate for myeloma awareness, treatments and cures. For those that select a different approach, that’s ok, too. There truly is no right answer.

To view the article in its entirety, click here.