Monday, July 30, 2012

Celebrity Cancer

People often reach out to me to share facets of their lives with cancer or with someone who has cancer. Sometimes it's a company trying to market a product, service, or personality. Sometimes it's a real human being with a comment that just about breaks your heart.

If there's one thing I've learned, you can be as famous as all get out and still have a disease like cancer. Cancer doesn't respect fame or fortune. It's that fortune that cancer sometimes goes after. It can be tough to handle the price of cancer treatment, especially when you don't have (enough) health insurance.

Ever since I wrote about Suzanne Whang's cancer, I've had people contacting me. They seem to be coming out of the woodwork. Some want the opportunity to use my blog to publicize their own efforts. I am wary of people looking to make a buck on the backs of cancer patients.

I am also wary of providing opportunities to raise funds for specific cancer patients. That's not really what I do.

When I write about a celebrity like Ms. Whang, I don't do it because I'm looking to be her next best bud. I don't do it to schmooze with the big fish. I do it because I have enjoyed her show on HGTV over the years and find her appealing.

More importantly, I'm impressed with her credentials, not just as a cancer patient, but as someone with a background in psychology. To me, that's someone who has some specific tools to navigate the cancer conundrum, and I'm always curious, as an educator, of the ways that can help or hinder a cancer patient.

The reality is a lot of people have cancer. It's often heartbreaking to hear the many, many stories. But there are sometimes moments in the lives of cancer patients that are truly inspiring. Cancer patients often share some wonderful insight on how they survived their experiences, how they coped, and what worked when they needed care.

As far as celebrities go, I'm not all that impressed with fame and fortune. I don't think it's going to change any cancer patient's life to know that So-and-So went to Tahiti for a luxurious spa treatment. What I'm interested in is what gets people through those dark, lonely, terrifying times and helps them to feel involved in life again. It's that "putting one foot in front of the other" that will make a difference in someone else's life I care about.

The truth is I stink at political correctness. I'm not impressed with money or glamor. I'm skeptical and stubborn. I don't want to be a celebrity. I don't want to be a star. I want to bring a little sunshine into the lives of cancer patients and their caregivers. I want to give hope, real hope, that these are the moments in life that matter, that even when cancer strikes, it doesn't have to take over our lives. Sometimes it's as simple as saying, "For the next hour, I'm not going to think about cancer." Sometimes it's about turning your back on the scariest thing you've ever seen and thinking about other things.

The only time celebrity cancer can help cancer patients is when there are real tidbits of information, education, and inspiration that really have nothing to do with being famous and everything to do with spreading the word about sharing with cancer patients helpful ways to cope. Celebrities often have a public platform, and that platform can reach a lot of people.

As for me, I'm not looking to be an important cancer caregiver blogger. I'm looking for that caregiver at his or her wit's end, trying to figure out how to help a loved one. I've been there, done that, and have the tee shirt, and because it's now part of my experience, I want to make life better for those caregivers who come after me. That's my motivation, my focus, my voice.

You don't have to be famous to help a cancer caregiver or cancer patient. You can pass along your wisdom, hard-won though it may be. Never be afraid to reach out. Never be afraid to speak up. But most of all, never forget what it is like to be there with a cancer diagnosis, in yourself or someone you love. That's far more important than being famous. It's being human.

For more help with your cancer caregiving, visit The Practical Caregiver Guides

Friday, July 20, 2012

Has Molecular-Level Cancer Testing Made a Difference for You?

Some time ago, I was approached by a GE Healthcare representative doing an outreach program on new molecular-level cancer testing. This approach tailors cancer treatment to the specific needs of each patient. The question is has this type of cancer treatment made a difference in the lives of patients?

Every cancer patient will have a unique experience, based on the type of cancer, its progression, other non-related health issues, and factors such as stress level. No two cancer patients will ever have identical experiences. I learned long ago that cancer patients can have similar experiences, and by identifying not just differences, but also similarities, cancer treatments can be improved.

Let's be honest. In this day and age of expensive health care treatments, there is little point in using technology that costs a fortune, but has no positive gain. That's wasteful spending. Kind of like throwing gold-flecked snake oil at a rattlesnake bite. If it doesn't fix things or improve things, there is no point in wasting time or money to continue.

I would love to hear from cancer patients and/or their caregivers. You're the folks on the front line in the fight against this disease. The question is this. Has molecular-level testing for your cancer or your loved one's cancer made a difference?

Some people new to cancer may read this and think the question is silly. Anyone who has managed cancer over the years, or cared for a loved one who has, will understand the difference. Right now, every single day, the battle against cancer advances. From doctors and researchers who have the disease, we have volunteers willing to use themselves as guinea pigs for new treatments and trials. Who better to understand how to fight the war than someone who understands what it feels like and why it feels that way? When we shift from a one-size-fits-all style to an understanding that there are differences and nuances inside each cancer, we begin to match patients with treatments that are far more effective and do far less harm. Instead of just forcing a patient to undergo a treatment doctors guess might work, research begins to show improvements.

As a blogger who follows cancer research and treatment trends, I have been optimistic in the last several months that there is some serious progress in the war on cancer. Why? Because I am beginning to see reports of untreatable cancers being treated successfully. Cancers that were diagnosed as Stage 4 are suddenly succumbing to new treatment options still in the testing stages.

Anyone who has ever had cancer or a loved one with cancer knows that very often it's the treatment that does more damage to the body than the actual cancer. Heart damage, tissue damage, and a myriad of other health issues can result. That's why I think molecular-level cancer testing is going to make a difference in the lives of people with the disease.

I know that researchers can test blood and tissue samples. I know they can examine patients, measure results, and even chart their progress. But what does it look like from a patient's point of view? What does it look like from a cancer caregiver's point of view?

I remember when my mother was being treated for lung cancer. She got frustrated at times with the physical limitations imposed upon her by the disease. But I also remember the hope that trickled forth when she began to regain some of her mobility, when she could once again go out and live her life. In her case, she gained some extra months, and she put a lot of effort into making them count. She wanted to live as long and as fully as she could. I often think that's something that cancer patients and their families share.

If you have a comment you would like to share with readers of my blog on molecular-level cancer testing, I encourage you to make it. Don't make it just for me. Don't make it just for GE Healthcare, one of the makers of the testing equipment. Make it for the cancer patients now in treatment and for those to come. Make it because you have a voice that wants to speak and you have insight into the situation. You and your love one may not realize it, but you have much to say to researchers about how cancer affects your life. Let them know what does and doesn't work for you. The more that is known about how cancer treatment affects your life, the better treatments can be better tailored to help, not hurt, patients.

If you would like more help with your cancer caregiving, please visit The Practical Caregiver Guides