Category: Cancer Treatment Centers of America

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cancer cancer fiction Cancer Treatment Centers of America colon cancer Michelle Hastings Mission:Remission

Would Real-Life Cancer Survivor Michelle Make a Great Character in a Novel?

I first met Michelle Hastings at the Cancer Treatment Centers of America facility in Goodyear, Arizona almost a year ago. I was sitting at a table in the conference room when in blew this vision in wildly colored, spiked hair, looking like a rock star. A generation younger, with a very positive energy, she bustled around with the confident air of a regular visitor to the hospital. That’s because she is.

Back in 2008, Michelle found out she had colon cancer, but she was determined to beat it. She wrote about her journey in her blog; once known as Michelle Will Win, it has transitioned to Mission: Remission. (It’s a great resource for anyone facing a tough cancer battle of any kind. Her spirit, her energy is uplifting and inspiring. Check it out.)

When you look at Michelle’s definition of herself, you’ll see this: wife, mother, daughter, sister, friend. She doesn’t talk about her career as an astronaut on the last space shuttle or her amazing stint as a famous movie star in Hollywood. She never mentions anything about winning the Miss Fabulous beauty contest or how she learned to conquer her fear of octopuses by scuba diving to 1000 meters without a spear gun. Oh, no. That’s because Michelle is a people person. It’s all about connections. It’s all about love, life, and loving life.

If you stuck her in an isolation tank, you would break her heart, not to mention the hearts of all those people who love her. That’s because Michelle embodies the very essence of humanity — the ability to connect with other people in a way that leaves you feeling like the world is a better place because she’s in it.

As a mystery writer, over the last few months, I’ve toyed with the idea of creating a new series, wondering if I could ever invent a character with her joie de vivre, her tenacity, and her single-mindedness to overcome adversity. Is it even possible? What kind of storyline would I write? And what would that character be like?

I can tell you this much. It would be a “cozy mystery”, without gruesome, bloodsucking beasts or insidious villains who practice unspeakable cruelty. It would be the perfect story to read while curled up in front of the fireplace on a rainy night with a cup of hot cocoa, because that’s the kind of person she is. Michelle was so happy the other day when the Christmas lights went up and she could revel in their twinkling glory. She even remarked that most people would think it was too soon to start decorating, but she didn’t care. She was going for it. This young woman knows too well that you must seize the moment when it presents itself. She does not procrastinate when it comes to embracing fun. She grabs it with both hands and holds on tight.

And as far as the action part of my tale, it would have to be a good match for Michelle’s vibrant persona to be believable. I’d give my heroine a warm, supportive family for her crime-solving activities, a fun cast of characters, and more than one wacky sidekick. Maybe I would send her off to Disneyland, and have her discover a lost child in the crowd. Michelle is the kind of woman who would recognize that “deer in the headlights” look from a frightened youngster in a crowd. She is, after all, a mother. I could have her search for the missing adult, letting the story take a thrilling, twisting trajectory, but with a happy ending, because that is what Michelle constantly seeks in life.

Or maybe I would send her fictional alter ego on a vacation to a dude ranch, and while on a trail ride, let her stumble upon an abandoned horse in the middle of nowhere. She could track down and rescue the rider. Michelle could certainly hold her own out in the Wild West. After all, she’s been battling cancer all these years. Why, I bet she could scare the rattle off a sidewinder with just a look and some of her fierce determination.

Then again, with her work as a cancer advocate, maybe I could create a mystery in a hospital, with a patient who is too overwhelmed to reconnect with family. Michelle’s character could reach out to all her social media contacts and help a patient reunite with a lost family member, someone who slipped away decades before, and they could come together when it matters most. It would have to be a heartwarming tale, because that’s the epitome of the real Michelle, overcoming adversity with gumption and guts. Perspective is half the battle when it comes to conquering cancer. You might not beat the disease, but you can beat the hold its terror has on you, and when you do that, another door opens, or another window, and you’re off on your next adventure in Cancer Land, finding those hidden moments of beauty, those tender minutes when the universe seems to stop spinning out of control and life, in that brief few seconds, all makes sense. We are here to love, to laugh, to share with one another, and nothing else really matters except what passes between united hearts.

As you can see, an inspirational character can drive a storyline in all kinds of wonderful directions for an author. A wise writer lets the heroine go her own way, in her own style. In Michelle’s case, her fictional counterpart would have all of her amazing qualities to lead her down the path to adventure, and she would take her ever-widening circle of family and friends, her “peeps”, along with her. They are so much a part of her that I can see them having a hand in solving the “cozy mystery”.

Oddly enough, in my vision for this mystery series, I wouldn’t want to bump off lots of victims, leaving a trail of dead bodies strewn across Arizona, California, Colorado, or anywhere else I sent her. I’d pack the stories with lots of frights, and maybe a few bang-ups, chills, and spills, but my fictional heroine would be about saving lives, not taking them. Michelle is, after all, a healer. She’s not here to destroy the world; she’s here to save it. The fictional Michelle would want to do the same.

But there’s only one problem with the idea of creating a heroine based on a real woman for a new mystery series. How can my character ever hope to compete with the real thing? She would be forever a poor substitute for Michelle Hastings. That’s because I never really know what I will find when I see she’s added a post on her Facebook page. It could be just about anything. One day, it might be that things are going great for her. Another day, it might be that her blood work is absolutely dismal. Michelle is a very real cancer survivor, struggling with managing the disease. She’s allowed people like me a glimpse into her visit to Cancer Park, where she sometimes gets to ride the Ferris Wheel and take in the pretty vista, and other times, goes into the House of Horrors, where the floor slips out from under her as she tries to navigate the dark and scary maze that is cancer. The hardest thing to watch is when she climbs into a car on the roller coaster and it leaves the platform. I never really know if she’s coming back in one piece. But as scary as it is for someone like me, that’s nothing compared to the whirlwind emotions that Michelle and those with her on that ride must experience.

And yet, I am still tempted to create a series with such a heroine. The truth is the world needs people like Michelle — to teach us what really matters about life, about living. We need to know that our circumstances aren’t always very fair, but that shouldn’t stop us from pushing back, from striving to be more tomorrow than what we are today. Could I create a cancer character that would move readers to embrace the good in life? I probably could, if I stick to the heart of what makes the real Michelle tick. She’s been a great teacher to many, a winner several times over, even through her toughest battles. That’s because she’s Michelle, one-of-a-kind and unique. I’m glad I had the chance to meet her in Arizona, all those months ago, but I’m delighted that I had the great wisdom and curiosity to listen to this voice of courage.

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Alicia Staley Angelina Jolie breast cancer breast reconstruction Cancer Treatment Centers of America Dr. Deanna J. Attai Jody Schoger

Dr. Deanna Attai Explains Preventive Breast Reconstruction

If you didn’t read the New York Times article today on Angelina Jolie’s decision to have a preemptive double mastectomy because she has a history of cancer in her family and high risk of developing the disease, please do:

No Easy Choices on Breast Reconstruction

Written by Roni Caryn Rabin, it’s chockful of good information, thoughtful consideration of the issues involved in making the decision, and lots of wisdom offered by Dr. Deanna Attai.

I’ve never met Dr. Attai, but I was lucky enough to meet some of her friends a few months ago at the Cancer Treatment Centers of America Bloggers’ Summit out in Arizona. Alicia Staley and Jody Schoger are two-thirds of the brains behind the Monday night BCSM online chat. Dr. Attai is the other third.

For women facing breast cancer, BCSM (Breast Cancer Social Media) is a support group like no other. Imagine having other women who have been there and done that show you how to wear the tee shirt. You can follow the Twitter conversation, moderated by Alicia, Jody, and Dr. Deanna, at #BCSM Chat Monday nights at 9 PM.

You can also click on the group’s website link, www.bcsmcommunity.org.

Why am I telling you this? I don’t want you to just stop at the end of the New York Times article. If you’re facing this important decision, I want you to make the best, the smartest, the most informed decision you can about your future. Most of all, I want you to have resources and support, and that’s what the BCSM community offers. Don’t go it alone. Don’t just assume you have to do this or you have to do that. Every woman is different. Every cancer is different. It’s never one-size-fits-all.

One of the best pieces of advice Jody gave my readers in her interview with me was this:

“The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don’t realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It’s a lot to take in at one time. But you don’t want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There’s only a small subset of breast cancers immediate action is necessary.”

“Jody Schoger Wants to Make a Difference….” Interview

Dr. Attai has guided so many women through the maze that is breast cancer. You can find her on YouTube, offering helpful information on video:
http://www.youtube.com/user/dattaimd?feature=watch

You can also find her website: http://www.drattai.com/

Facebook? She’s there, too, as Dr.DeannaAttai. At Twitter, she tweets as @DrAttai.

If you’re dealing with breast cancer and its related issues, be good to yourself. Join with others who have sailed those waters. Share your experiences, the lessons you learned, the wisdom you gained. For every time you felt that dark shadow cross your heart and felt that panic, know you are not alone. There are others who know that pain. By coming together with social media, Dr. Deanna, Jody, and Alicia created a wonderful resource center to fill a deep void in cancer treatment. Breast cancer is such an intimate and life-transforming disease, and it takes a lot to get through it. Improve your chances by gathering up what you need from women who understand how to pack that suitcase.

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cancer bloggers cancer treatment Cancer Treatment Centers of America CTCA Blogger Summit

What Did I Get Out of the Cancer Treatment Centers of America Bloggers’ Summit?

Warm, sunny Arizona

I arrived home from Arizona at the Cinderella hour, having schlepped my overloaded carry-on bag through three airports in one day. You would have thought I was exhausted, wouldn’t you? Instead, I was still fired up — about the information I gained throughout the Cancer Treatment Centers of America Blogger Summit and the chance to speak with fellow cancer bloggers. As a cancer caregiver who believes strongly in education, I was already committed to helping cancer caregivers provide better care to their loved ones. Now I’m determined to do it even better!

One thing is clear to me after speaking with the participants. We need more education, more resources, more information about how to survive and thrive with cancer. We need the whole cancer community to come together and share — the newest treatment options, the clinical trials, the latest physical and occupational therapies, the best nutritional practices, and every little tidbit of hope we can find. That’s where we will find the strength and courage to get through this toughest opponent of health and well being.

Cancer Treatment Centers of America posted many of the speaking events on their Livestream site. You can watch them for yourself and get some perspective:

Cancer Treatment Centers of America Bloggers’ Summit 2013

New England’s winter chill — brr!

Maybe it’s because I’m back in winter mode, no longer soothed by the warmth and sunshine of the medical center’s campus, but I can look out on the horizon here and find the parable. As individuals trying to reach out to those who can benefit, we are but a few whispers in the winter wind. But when we join together to raise our voices, we become a choir that rises above the chilly landscape of cancer. We can and should raise all hearts and minds to focus on getting this done. We can provide the warmth of human contact and courage by reaching out. Uniting with other people who are determined to spread The Word about Cancer (there’s a great name for a cancer community!) is a powerful thing. We aren’t folks who are interested in our own glory or making a name for ourselves as individuals. We are people who want to advocate because we believe we can and will make a difference.



Matt Zachary, Professional Musician and CEO of Stupid Cancer, playing one of his own compositions at the summit

We know the why of this — people need the best information and education in order to fight the disease in a meaningful way that preserves quality of life. That’s a big part of the reason for the CTCA Bloggers Summit — we all sat down together to brainstorm for answers. But how do we get these things? When do we get these things? And more importantly, where do we find them and who provides them? Clearly, social media and the Internet are technology tools that we can harness to provide them, and the various conferences, such as the Stupid Cancer OMG Young Adult Cancer Summit, can make a difference. But we need more — we need the real research into what helps cancer patients to stay in the game and go from sprinters to marathoners. We need to know what practices, medical and supportive, improve patient outcomes. And we need that information to be available to people everywhere — not hidden behind a tree or locked in a secure vault somewhere. It should be out there and accessible to anyone with digital connections.



Bloggers Brian Simpson, Catherine Blotner, Lockey Maisonneuve, and Mailet Lopez

One thing that struck me as I had the chance to network with other cancer bloggers who are cancer survivors is that they come in all shapes, sizes, ages and stages of cancer survival. Many had multiple occurrances over many years. That’s a lot of experience between them. The cancer survivors I met were prepared to have a real and honest dialogue with CTCA team about it, because they want to go the distance. They weren’t shy about voicing their vision. Overwhelmingly, they share one thing — a passion for helping others overcome better than they did.


Rob Harris bellies up to the popular smoothie bar
 

My fellow caregiver attendees and I can also bring something important to the table in partnership. As much as it matters that cancer patients network with survivors, families with a loved one in cancer treatment or management need to understand the issues and how they affect the whole person and the whole family. Nothing saddens me more than to hear about cancer patients feeling abandoned and alone. The better able family members are to understand and appreciate what cancer does to a human being, the more likely they will be to offer the right kind of support to their loved ones.



Alicia Staley in the Arizona CTCA’s lobby

We are on the cusp of the New Dawn in cancer treatment and management. Cancer survivors today are a new breed, and long-term management of symptoms, side effects, and stress is critical to being as healthy as possible.  In the next few weeks, I will introduce you to some very impressive people on the front lines of this people-powered movement. I think you’ll enjoy learning what they have to share with you.



The writing is on the wall — real messages from real cancer families at CTCA’s Arizona center

For more help as a cancer caregiver, visit The Practical Caregiver Guides

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Bob McClendon cancer caregiver cancer nutrition Cancer Treatment Centers of America caregiver education CTCA Blogger Summit Frank Caputo Hope Springs Organic Farm McClendon Select organic farming

Getting Down on the Organic Farm with Cancer Treatment Centers of America

How many cancer treatment centers can boast they have a Culinary Institute of America chef like Frank Caputo? Better still, how about an organic farm just out back of the hospital? Cancer Treatment Centers of America can. The Western Regional Medical Center in Goodyear, Arizona has both. I got an up close look at the operation while at the CTCA Blogger Summit.

Bob McClendon, a former pharmacist-turned-organic farmer, is in charge of Hope Springs Organic Farm, a 25-acre spread. As you stand looking over the fields, you can see the neat rows of vegetables planted by son Sean. It’s very much a family business. (Daughter-in-law Kate is also involved. She writes a nice blog on organic produce http://mcclendonsselectblog.com/ )

On the day I was there, Bob’s grandson was riding his bike through the property, even as the GPS-equipped tractor was zipping along. The GPS helps Sean plant straight rows — the McClendons take their organic farming very seriously. Every drop of water is monitored and utilized to prevent waste and to nurture the tenderest of vegetables under the hot Arizona sun.

Chef Frank Caputo is the real genius behind the farm. He pushed Bob to join the endeavor. From what I saw, it was well worth the effort. Frank was more than happy to offer a cheddar cauliflower to pass amongst the crowd. He also grabbed a handful of assorted greens, the very produce that would go into our buffet lunch.

What surprised me most about Hope Springs Organic Farm is the size of the operation, even in its early stages. When you look out of the rows of plantings and then you step into the dining room, you don’t have to worry about how long the vegetables have been stalled on a loading dock in some warehouse. This is freshness at its peak. Visitors are welcome to walk over to the farm, and when we were there, I saw folks do just that.

The lunch we were served was impressive, from the grilled cauliflower to the Swiss chard salad to the healthy smoothies. Clearly Frank Caputo and his team work hard to make sure patients, staff, and visitors eat well.

Just to be sure, I took a tour of the “food court”. I wanted to see how other people were reacting to the offerings. At a large salad bar well stocked with choices, a young boy of about ten loaded his plate. (As a salad affectionado, I can attest to the fact that the salad bar meets with my approval.) He clearly had eaten here before, because he was determined to get “the good stuff”. The number of food stations and choices was impressive. A number of staff members and patients were ordering specific items.

What I loved best? One of my fellow bloggers (currently a patient at the hospital) can’t digest certain foods while she’s undergoing cancer treatment. Frank’s right-hand man brought out platters of steak and chicken to make sure she had the proper nutrition.

One of the toughest things for cancer patients in treatment can be the nutritional issues. Food can be a struggle to get down. That’s where Director of Nutrition Sharon Day comes into the picture. She works with patients and their family caregivers to offer choices at the hospital and at home that will meet with the patient’s palate and ability to handle the heavy lifting. The truth is not everyone has Chef Frank Caputo’s skills. Sharon is more than happy to offer recipes, tips, and ideas for the amateur and the experienced. She helps adjust the diet to accommodate the medications used and the patient’s ability to swallow, to digest, and to take in enough calories to handle cancer treatment. One of the biggest issues for cancer patients is getting the right nutrition that will enable cancer treatment to work effectively. That puts her on the front line of every patient’s medical regimen at CTCA.

The attention to detail at CTCA is very impressive from what I’ve seen so far. I’m comparing it to other cancer treatment facilities I’ve experienced as a caregiver and as an educator. But I think it’s the staff that stands out the most. People really do seem to enjoy their work, right down to the sweet young woman in the ladies room, who cheerfully answered our questions about a lotion dispenser on the wall. This is very much a “people place”. It’s not going to change the fact that cancer is cancer, but it could help you endure cancer treatment in a much more pleasant atmosphere.

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advanced breast cancer breast cancer cancer caregiver cancer treatment Cancer Treatment Centers of America CTCA CTCA Blogger Summit Goodyear AZ service dogs Western Regional Medical Center

Cancer Treatment Centers of America Honors Service Dog Pee Dee

I admit it. I’m a people watcher. I like to get the feel of a place by observing the comings and goings of people. At the moment, I’m at the Cancer Treatment Centers of America Bloggers’ Summit at the Western Regional Medical Center in Goodyear, Arizona. During a break in the many presentations involving cancer technologies, I stepped out into the lobby, sat down, and just watched the passing parade. I wasn’t expecting pooches in service “uniforms”.

I had already found the two fish tanks flanking a big fireplace on my first visit. Fish gotta swim and they do here. The bright colors attract the eye and draw you in. I always like to see signs of life in a hospital, and that was a positive impression of the Western Regional Medical Center in my book.

 

But yesterday, on my second day here, I saw something I never thought I would see — a retirement party for a dog. Pee Dee, the chocolate lab, was hanging up his hat as a service dog at the hospital.

All the other dogs were there for the party, some frisky and tail-wagging, others gently awaiting your approach. It was a nice bunch of pups, and it was clear from the reactions of the people passing by that these dogs were well-loved, by patients, by family members, by staff.

I watched all the hands come out to greet the dogs. Some people stopped and bent down to say hi. Others gave an affectionate pat or a little scratch behind the ear in passing. The ladies who accompanied the service dogs were cheerful and kind, too. It gave the lobby of the hospital a friendly feel. This is no cold, sterile medical environment. And all that was before the party started.

It was held outside, in the courtyard, a space filled with barbecue grills and benches, just off the sports area, where a putting green awaits. (The current LPGA champs have nothing to fear — it took about 50 shots to make my only hole-in-one of the day….) There was cake, a small ceremony, and lots of chuckles and cheers for Pee Dee.

Why do I write about a retirement party for a service dog? That’s what you get at the Cancer Treatment Centers of America facility here in the Arizona desert. People who stop for ten minutes to thank a pup who has cheered patients through the cancer treatment process. It’s about connecting to life, to the little things we can and should celebrate together. Warm hands, warm hearts help cancer patients get through the challenges of cancer treatment, but they also get the staff through, too.

That’s why I like to just sit sometimes and observe, especially when I’m in a new place. I don’t want people to tell me what it’s like to be there. I want to see it for myself. I want to watch what patients and family members do, to see their reactions to a place. Are they comfortable or miserable? You can see cancer patients in the garden, sitting at tables in the shade, enjoying the day, or wheeled out in their wheelchairs by loved ones. This doesn’t feel like a hospital, even though I know it is. It’s a place where patients can take a break and get outside on a pleasant day — Arizona has a lot of those at this time of the year. It’s a place where even a dog like Pee Dee gets his due.

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cancer caregiver cancer management Cancer Treatment Centers of America caregiver education CTCA perception personality

What Roles Do Personality and Perception Play in Cancer Treatment?

Is cancer a case of mind over matter? Can we engage one to more positively affect the other? And if so, what roles do personality and perception play in cancer treatment?

Here I am in sunny Goodyear, Arizona, at a Bloggers’ Summit sponsored by Cancer Treatment Centers of America. The weather is fabulous, especially given all the chilly winds and white snow I left behind. Last night I sat out under the stars with the group of fellow bloggers, almost all of them cancer survivors. We laughed for hours, sharing stories. There wasn’t a Shrinking Violet or Vinny among them. Each has his or her own story about cancer, and in coming together, it was an engaging banquet of food for thought.

Which makes me wonder about the power of personality and perception in fighting cancer. We can’t really change personality. People are who and what they are. Each of us sees the world in unique ways, and once you understand where we’re coming from, you can adjust your message to be better heard. But it’s never one-size-fits-all. Men and women tend to process information differently,but within that construct, individuals are sometimes stronger in some areas than others. When I say the word “cancer”, your perception of the disease is based on your own personal experiences with people you know who have battled it, but also on what you know about the public information that’s out there. What pieces of the puzzle are you missing? What you don’t know can and will hurt you and your loved one, especially if you’re wrong in your perceptions.

As a cancer caregiver, you can’t change the personality of your loved one, nor should you, but will an understanding of him or her help you provide the right kind of support? It makes me wonder if there should be a different approach to cancer for a Type A personality than for a Type B personality. Maybe people who are go-getters will do better if they are armed with information they can use to motivate themselves — statistics, goals, and your basic business plan. That’s just how they roll in real life and we should respect that. Maybe people who are go-with-the-flow-ers will do better if they are allowed to function in the way that enables them to do what works for them — forget about the details and the Devil, and just live in the moment. That’s how they do things and there’s nothing wrong with that. To each his own.

Over and over again last night, I heard a similar theme. Cancer patients and survivors get treated differently than people without. Right there, you know that’s going to have an impact on life. We aren’t at the point where we ignore cancer once it’s happened. It’s like stink on a skunk, trailing behind the cancer patient. One whiff and folks disappear. The last thing anyone wants is to feel people pulling away emotionally, mentally, and sometimes even physically. That’s a lot of stress to live with when you’re already trying to get back to the new “normal”.

What does it take to rise above that and engage the mind in the healing process? If you think about the role the brain plays for the human body, it’s really a head game in many ways. The head operates the rest of the body systems, so tapping into that energy and directing it in positive ways should make a difference, shouldn’t it? If it’s the head making the decisions about what happens, how does the brain move through the decision-making process to the best advantage?

We sometimes seem to forget the brain is divided into two hemispheres, right and left. Concrete and creative. That’s where perception comes into play. Perception is information-based.  And when there’s a lack of information, the creative brain will fill in the blanks. That’s sometimes dangerous, because we can begin to believe things that just aren’t true. The body will act on the misperception. If you input more information and expand the knowledge of a subject, the brain will adapt to accommodate the change, but only when there is recognition things have changed. The mind has to send a signal — “Hey, guys! We’ve got new intelligence on this thing. Look it over and make adjustments.” The more you know that is evidenced-based, the more rational the decision-making. You can actually change a person’s emotions by changing his or her perception of the subject. All the more reason to make a positive effort. So, what does happen when you have strong personalities that can weather the storm and see beyond it? That’s when your mind works with your body to overcome the challenge that is cancer. You have to believe that what you’re facing is “doable”, and even more importantly, worth doing.

The people I sat with last night are the living proof the battle is worth it. Vibrant and alive are two words that describe them. But their cancer experiences surely played a role in awakening the personality to take on the fight. For several people, it seemed that cancer put a focus on their lives they didn’t have before. They no longer waste time on people who waste life. They take more chances because they want the chances they take to mean something. They live a far more intense experience because of cancer, not in spite of it. Maybe they would have done the same if their lives had been challenged by some other life-transforming moments, because it would have given the personality a chance to strut its stuff. In that sense, it’s the challenges, not the cancer, that benefited the individuals.

Maybe the more we understand how cancer works, the better we can teach cancer management. We can begin to understand that cancer didn’t just appear over night. It took it’s time setting up shop in the body, hiding out, lurking. When the concrete mind begins to pay attention to new symptoms, when the creative mind begins to believe it’s possible to change the outcome, won’t the mind be better able to direct the body to focus on what’s important at each moment in time, whether it’s taking the difficult cancer treatment that will make a difference or learning to relax and not let the fear fill your head?

A house divided can’t stand. The structure, the foundation, will eventually fall. A cancer patient at war with his creative and concrete minds will be struggling to understand what the immediate picture is and what the future picture can be. What you believe about cancer is every bit as important as the scans, blood tests, and other measures of the disease within the body. If your perception is based on a fantasy, that cancer can be wished away magically, the concrete mind isn’t likely to buy that claim. If it’s based on evidence that what is done can and will have a more positive outcome, the creative mind can begin to look for ways to work with the concrete mind to get the body what it really needs. Does the personality help to determine how that perception plays inside the head?

As cancer treatments have evolved, our understanding of the types of effective medications, radiology, and surgery have also expanded. We know cancer isn’t one disease — there are hundreds of types of cancer. The more we hone how well specific treatments work on specific cancers, the better the outcome. I believe the same is true for the cancer survivor’s mind. The more we understand individual differences in human beings and how their brains process information on cancer, the better we can help and support our loved ones to fully engage according to their ability to perceive the disease. Some people are always going to want to know every little detail, others are not. When we respect our loved ones’ comfort zones and apply our care to fit their real needs, we’re giving them the real support that will help them face this foe.

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cancer caregiver cancer treatment Cancer Treatment Centers of America caregiver education CTCA Blogger Summit

Cancer Treatment Centers of America — When Opportunity Knocks

I’m a big believer in taking chances when the risks seem reasonable and the odds are in my favor. I’m not much of a gambler. I don’t play the slots or cards, especially not for cash that should go to pay bills. But I also believe that when opportunity knocks, it’s okay to answer the door, even if you check the peep hole first. That’s why, when Cancer Treatment Centers of America asked me to their Blogger Summit, I agreed to go.

I’ll admit it. I’m very curious about what CTCA does differently. I’ve looked at the website several times now, but I’m still not sure what to expect.

Cancer Treatment Centers of America

Most patients travel for treatment. The regional centers have accommodations for patients and family. They also have things like laughter therapy, a hospital garden, a very impressive nutrition team, and so many other things that I believe can be therapeutic for cancer patients and their families.

What does CTCA do for family caregivers? That’s what I want to know. I have a theory that if you educate a family caregiver to take care of a patient with the best information and support, if you give that person the physical guidance and support he or she needs to help a loved one get through cancer treatment, there’s a far greater chance that the patient will comply with medications, nutritional intake, pain management, and stress reduction. But it’s more than just a bunch of social workers and nurses giving lectures in a hospital setting. It’s networking, hooking experienced caregivers up with newbies, offering insight and inspiration for everyday life. It’s a cup of coffee and a shoulder to cry on. It’s someone who understands that it’s frustrating not to be able to get everything done on a to-do list because there are so many priorities and everyday issues get kicked to the curb.

Every time I’ve checked on this hospital or that hospital, it seems like the caregiver education just isn’t available. There might be little meetings here and there, but no real concerted effort to hook caregivers up in a  meaningful way that makes a real difference. You can talk about stress reduction all you want, but in a business that provides paid services, many health care providers would rather collect fees for fixing you than preventing you from breaking down in the first place, and that’s a shame, because many caregivers burn out too soon. Maybe CTCA is different. Maybe they have a structure that supports a caregiver outside the hospital setting. We’ll see. If they don’t, maybe they’re open to starting one.

What most medical people don’t understand about family caregiving is that it’s really not about medicine. It’s about people. What does it take to help another human being survive under difficult circumstances? How do you manage a household while helping a loved one undergo some of the most rigorous medical procedures available? Most family caregivers learn through the School of Hard Knocks, when mistakes are made. The longer you’re a caregiver, the more opportunities you’ve had to learn. Me? I should have a PhD. in caregiving. Lord knows I’ve seen my share of challenges. But I also believe that caregiving can be and should be taught.

If I could make one thing happen for family caregivers taking care of cancer patients it would be this — a study to determine if caregiver education can actually reduce mistakes and improve cancer patient outcome. I’m not talking about some touchy-feely, “gee-aren’t-we-swell” kind of study. I want to know if the right caregiver education can actually improve survival rates. Can we prevent unnecessary suffering and medical complications by teaching family caregivers to help manage care at home?

Sound crazy? Well, think of it this way. The greatest problem for most cancer patients isn’t that the cancer sneaks up on them overnight and steals their lives. It’s getting through the long haul. And to do that takes good medicine, good support, and good caregiving over time. Rome wasn’t built in a day, and cancer isn’t cured instantly. There’s no magic wand.

I’ve heard so many family caregivers say they were terrified, didn’t know what to do, didn’t know where to turn for answers — not for the medical issues, because most health care providers are good at helping with that. No, what I hear most from family caregivers is they didn’t know how to get it all done — the “living with cancer” part of things.

Living with cancer is more than just those trips for treatment or the instructions on how to apply lotion to radiation burns. It’s about understanding what disease does to a person, to a family, changing the dynamics in so many ways. Up until that diagnosis of cancer, life seems simple, and after those words are spoken, it’s forever changed. That’s because you often feel you’re living in the shadows until those scans show no more evidence of the disease. Borrowed time and uncertainty seem to become the norm for many cancer families, and it’s really tough to cope with that on a daily basis for any length of time. If you’re not used to running and you suddenly enter a marathon, you will fail on so many levels and put yourself at serious risk. Training matters.

So, how does CTCA reach out to family caregivers in a meaningful way, above and beyond holding hands and commiserating with them? What education do they offer in terms of helping family caregivers organize daily life around cancer treatment and balance family needs, so that the cancer is not the focal point of every conversation?

Maybe this is an opportunity for me to spread the word about caregiver education and the benefits of really supporting the families. I believe that family caregivers actually have the ability, with the right training, to not only advocate for their loved ones, but to be the eyes and ears for the treatment team, but only if they understand that responsibility. In order to do that, family caregivers have to pay attention to the physical signs they see and they have to be able to communicate effectively with the health care providers. If I’m right, that cancer survival can be improved by educating family caregivers, it will be because patients and their families feel confident that it makes a difference to take a proactive stance when it comes to cancer. A good part of the resistance to that approach is always the fear that families have that it’s too late, the cancer’s too strong. If CTCA accepts patients who are motivated to fight a survivable cancer, and those patients have cancer caregivers with real tools to help them get through it, maybe this is a part of the new cancer treatment horizon, that survival depends on what’s done for the whole person, and the better the resources, the better the outcome. I’m looking forward to finding the answers.

For more help as a family caregiver, visit The Practical Caregiver Guides