Category: CTCA Blogger Summit

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#LiveLikeMichelle colon cancer CTCA CTCA Blogger Summit hospice Michelle Whitehead Hastings

Why You Should #LiveLikeMichelle

In the real world, people come and go with blinders on. We all too often ignore the good and the bad that we see every day. We go about our daily lives automatically and we let ourselves get bogged down by petty problems, disagreements, and obstacles. We’re really only half alive to what is in front of us and we never really reach out for that brass ring. And then cancer shows up and life as we know it is turned upside down. Nothing will ever be the same.

The first time I set eyes on Michelle Whitehead Hastings, I was sitting in a conference room at the Cancer Treatment Centers of America in Goodyear, Arizona, at a Blogger Summit. It was hard not to notice her. She was electric, from the wild streak of color in her hair to her bright clothing to her effervescent personality. When she walked into the room, she was hard to ignore because she exuded life. Everywhere she went, there was a crackle of electricity. That’s because she’s a real live wire.

In conversations we shared here and there during the weekend, one thing leapt out at me. Michelle was passionate about living life. Forget the cancer for a moment. Forget the grueling treatments and the side effects. Forget the debilitating effect it has on the survivor and the family. If there was one thing Michelle was determined to do it was to live despite cancer. That #&*+= cancer wasn’t going to spoil the party!

I went home with the memory of this vibrant, funny, warm woman etched on my mind and I never stopped caring. That’s because Michelle’s greatest strength is her ability to get everyone on the bus for a memorable ride through life.

Over the last few years, I’ve continued to follow her Facebook postings through the ups and downs she’s faced, through the trips to Las Vegas, the country music concerts, the renewal of her marriage vows with her adored husband, and the adventures with her kids. And through it all, I’ve known one thing. Michelle really does know how to live.

Even in hospice care, she knows how to live. She asked folks not to start mourning her yet, because she’s still busy working on her Bucket list. (Actually, studies have shown that people who enter hospice care tend to live longer than those who don’t, and they experience a higher quality of life — Michelle seems determined to prove that premise right.) And what a Bucket list it is!

What spurred me to write about Michelle and tell you that you should follow her lead? It was a photo she posted the other day. She and her brothers were off to the tattoo parlor to get matching tattoos that would remind them of their love of apple season. It was to be “a little” tattoo, but when I saw the apple blossoms sprouting along each of those arms…well, how can anyone forget to remember their good times with Michelle? I imagined that session with the tattoo artist as the Whitehead brothers gamely held out their arms — oh, to be a fly on the wall for that conversation. And from what I understand from a subsequent posting, there’s also going to be a mother-daughter tattoo session. I can’t wait to find out what design they choose. I’m already looking forward to the photos.

It’s hard to say no to Michelle when she has a plan; all she has to do is flash that vibrant smile. But a tattoo is hardly a requirement for remembering her. That’s because she’s put her indelible mark on a lot of us in so many ways, whether you’ve known her for decades or, like me, you met her briefly. She’s made a point of staying connected to everyone. Michelle is constantly reaching out and giving back. I’ve admired the way she let people help her get things done. So many people shy away from this, despite their needs, but not Michelle. She welcomes the support, and in doing so, she gives the best support of all to the people who love her. Suddenly, helping Michelle becomes an opportunity to join the circle of life.

The photos have been wonderful. We’ve lived vicariously as Michelle has taken this tumultuous journey filled highs and lows. I’ve seen the formal portraits, the action shots, the candid pictures that capture the moments that matter to her as she updates her status. She might be reclining in a chair as she cheers on Syracuse (“Bleed Orange!”), or in the middle of a pumpkin patch on a farm visit with her kids, or arm in arm with the man she so loves as they say “I do” one more time. With each new image, my heart grows a little bigger and my eyes see more of what makes life worth living.

One of my favorite photos Michelle is at Goofy’s Kitchen, cuddling up to the Disney icon. Most adults might feel silly posing with a cartoon character. Not Michelle. You can tell she’s loving every minute of it as she leans in close to that canine snout and smiles broadly for the camera. When I saw that, I almost believed for just a second or two, that Goofy was real.

But it wasn’t just Michelle who experienced that unbridled Disney delight. A second photo showed the group of girlfriends huddled together as happiness enveloped them like a big, fat hug on their special visit.Years from now, that mother with the baby in her arms will pull that photo out of a drawer and remember her adventures with Michelle. She will look at her nearly grown child and feel that warm, happy glow again. That’s because she was touched by someone special, someone who taught her to never stop grabbing for the good side of life. She will #LiveLikeMichelle and she’ll pass that enthusiasm onto her lucky child.

That’s the magic of Michelle. She doesn’t leap tall buildings in a single bound or fly faster than a speeding bullet. In her world, people matter, the good moments have real power, and love makes it all bearable.

Wherever darkness finds you, turn on the light inside yourself by believing the good matters more than the bad. Those are the threads that weave the blanket of the soul that keep us warm when the challenges of life seem insurmountable. Point your spirit towards the sun, away from the storm, and seek shelter in those little nooks and crannies where humans are kind to each other and love is the tender of the realm. That’s how you #LiveLikeMichelle.

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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 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