Category: advanced breast cancer

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advanced breast cancer cancer caregiver cancer management cancer survivor

Why Keeping Hope Alive Is Critical

These days, with more advances in cancer treatments, survival rates have improved. But there is often a price to pay. Side effects can be brutal. Complications can be devastating.

Cancer attacks more than just the human body. It crushes the human spirit. The most confident person can be devastated by the loss of hope.

Doctors and nurses often treat the cancer patient’s body, but not necessarily the mind. And yet, the mind is one of the greatest tools available in cancer management. How a patient perceives his or her cancer really does matter.

If a patient feels there is nothing to gain from treatment, it’s unlikely that he or she will bother to:

— Take medications appropriately
— Eat as healthy as possible under the circumstances
— Get enough rest
— Avoid unnecessary risks to the immune system

Cancer is stressful. And when that stress builds up and becomes overwhelming, patients often surrender to the sense that it’s futile to even try. It’s easy to throw in the towel when you are in pain and unable to handle all of the horrible side effects. Patients often presume it’s all about the cancer. But sometimes that can be a mistake.

There are so many issues that can crop up in advanced cancer management, when the options are fewer and the regimen is rougher. If a patient is undergoing chemotherapy on an ongoing basis, dehydration, infection, neuropathy, and steroids are just some of the complications that can wreak havoc with the human body. After a while, it’s hard to tell whether it’s the cancer causing the problem or the treatment.

If a patient loses hope and gives up, the battle is over. People who are pessimistic about their chances won’t bother to look for solutions. They won’t tell their oncologists about new symptoms because they don’t want to know their cancer has advanced. But what if it isn’t the cancer?

What if the side effects are manageable with the right diagnosis? What if there are options if the oncologist recognizes what is really causing the problem?

I remember sitting in an oncologist’s office with a loved one who had just been given the prognosis about cancer. How many people survived this kind of cancer? What were the chances she could come out on the winning side of the equation? The doctor’s response was simple. While many people didn’t survive it, there were people who did. Why couldn’t she be one of the people who survived it?

That little sliver of hope at the right moment in time made a difference. She lived much longer than the majority of patients with the same diagnosis. We learned to manage the symptoms, to address them as they came up, to focus on comfort in order to maximize quality of life. Cancer patients need to feel they still have a reason to get up in the morning. They need to believe there is something worth doing. They need to believe they still have a chance to grab the brass ring.

I have been blessed over the last couple of years in unusual ways. I lost two family members to cancers that were aggressive. But as I grieved, a friend of mine beat the odds, and in doing so, she taught me that hope is a critical component of any good cancer management program. After such a struggle with pain and debilitating side effects, she is still here. She teaches me what courage, fortitude, and perseverance are all about. And above all, she has shown me that we should never turn our backs on hope. Because she believed, she searched for answers. She stayed on top on the issues. She fought for what she needed. She is the new advanced cancer survivor, using cutting edge treatments that have kept her alive against all odds. It hasn’t been easy. This isn’t some kind of cake walk for her. She fought tooth and nail to keep going. She believes that she still has something to achieve on this planet, so she finds a way to get it done. We’ve come to understand the power of love, faith, and hope in this life touched by cancer. Cancer didn’t make her a superhero. Her reaction to cancer did that. And because she did the hard work, we are inspired. We have learned that hope matters in everything we do. Love connects us. She’s told us so many times that our being there for her banishes the loneliness and isolation that cancer creates. Hope pushes us to try harder to help her, to lift her over the obstacles that stand in her way. It feeds our faith that there is something good for her on the other side of that wall.

This is how new cancer treatments come to bear fruit. Those extraordinary people who endure against all odds teach cancer specialists that those baby steps forward can become giant steps. It’s not enough to have strong medicines or powerful machines to attack cancer cells. Hope is the elixir for the soul and it opens the door to even the smallest little bit of opportunity. It is what creates quality of life for those survivors who believe they have a chance. And because they believe, more and more people are surviving what was once not survivable. Someday, cancer will be a thing of the past. Who’s to say my friend won’t be there to march in that parade?

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#BCSM advanced breast cancer Alicia Staley caregiver Dr. Deanna J. Attai elderly Jody Schoger palliative care

Advice Columnist Puts Breast Cancer Patient at Risk with Bad Advice

Problem: A 75-year-old friend has experienced a serious health decline. The elderly woman is battling breast cancer. Reader contacts nationally acclaimed advice columnist, worried that the friend has dementia.

Symptoms: The patient forgets to eat, which leads her to lose consciousness in public. She has been hospitalized for malnutrition and dehydration. She is forgetful and repetitive in her conversations and written communications. She appears to be increasingly frail and unkempt.

Patient’s support system: Never married and without children, she has one sibling, who is aware of her decline and wants her to move to a “retirement community”. Other possible support comes from the reader and associates at the company that formerly employed the elderly woman. They want to suggest that she hires home care help while she considers a “retirement home”.

Advice columnist’s view: Talk to the friend (who is having communication issues and may not comprehend). Do some research through the local office on aging and present the patient with options that will allow her to remain at home (assuming the dementia diagnosis is accurate). Try to visit frequently. Do things with the elderly friend. And if things are dire, contact the sibling (presumably to intercede).

On the surface, it all sounds like a good working plan, except for one thing. The 75-year-old woman is battling breast cancer.

In the past year, I’ve lost two family members to cancer. I’ve also been there for two cancer surgeries for another relative. And, sadly, I had a beloved relative who had advanced breast cancer that was never diagnosed, despite multiple visits to her physician and complaints. When that breast cancer spread to her bones, every bit of her body ached and she suffered enormously. She could have been helped by proper cancer care, but because she was elderly, she was treated for age-related issues. That is a lesson I will never forget, because the people who loved her were unable to help her. When the aches and pains an elderly person experiences are chalked up to arthritis, dementia, or any other age-related issue, that patient will not receive the appropriate treatment. There will be no palliative care for the pain, no treatment for bone mets, and no help with issues such as nutrition and hydration.

So, what did I do when I read the advice from the nationally recognized advice columnist? I contacted her, pointing out the very real possibility that the problems the elderly woman was experiencing were actually the result of the breast cancer. It might have invaded her brain. That’s not an unusual thing with breast cancer, is it?

There is also the very real possibility that the decline in mental function was the result of powerful chemotherapy drugs and/or other treatments. Many breast cancer patients are familiar with the annoying and debilitating effects of “chemo brain.”

Anyone familiar with cancer patients and the challenges they experience knows that the malnutrition and dehydration issues raised by the reader can be symptomatic of the breast cancer. That’s why many cancer centers have nutritionists that work with families to assist in providing nutrition to the patient that is tolerable under the circumstances.

And let us not fail to consider that this 75-year-old breast cancer patient could be depressed with her circumstances. Having breast cancer can bring the strongest of us to our knees. I have a number of friends who are breast cancer survivors, married and single. They have shared their insights in ways that are now permanently etched on my mind and in my heart. Having breast cancer can be a very lonely, isolating experience. Good support is critical in surviving the brutalities of the disease.

The response to me from this nationally acclaimed advice columnist was less than stellar. She was offended. She took umbrage at my response to her advice. She tossed in a tiny little, “could be the cancer”, which was apparently meant to make her appear to be flexible on the subject. But she stuck to her guns that her advice was appropriate. It wasn’t. Why?

By sloughing off the 75-year-old woman off as being elderly, she had actually provided harmful, not helpful, advice (which raises the question of liability should the 75-year-old breast cancer patient be involuntarily hospitalized for dementia if the cancer is causing the problems). She allowed the “dementia” label to stand. She didn’t correct the reader or open the possibility of some simple ways to help the cancer patient.

What would be MY advice? First and foremost, if a woman is battling breast cancer, recognize that’s a medical diagnosis. That means somewhere, at sometime, an oncologist has treated the disease. We also know the patient has been treated for malnutrition and dehydration in a hospital. Is she still being treated or did treatment end? A scan could reveal a brain tumor pressing on the part of the brain that involves executive decision-making, for example. That’s not a matter of guessing that the patient has dementia. That’s a medical opinion backed up by scientific testing. Has that been done?

Hospitals and medical centers who treat cancer patients normally have cancer navigators, patient advocates, social workers, and a myriad of other support services that can assist a 75-year-old woman who lives alone, but has people to care about her. There is no need to go to the local office on aging for advice on anything.

But there’s a glitch, a very big one. HIPAA laws prevent unauthorized people from getting information on a patient’s situation, and rightly so. Obviously, the reader and her associates can’t call the medical center to find out how they can help. The 75-year-old breast cancer patient’s sibling might be able to do so, however. Normally, if someone is that debilitated by illness, a relative is essential in helping to navigate medical treatments, insurances, and other related issues. What is his involvement? Does he have power of attorney? Does she have an independent conservator? Who is helping this woman get through her treatments (or is she struggling on her own)? That’s the “go to” person. Every cancer patient needs one.

Thus, the best starting point would be finding out who is the “go to” person for the elderly friend. Who accompanies this woman to her treatments? Or has she been struggling with this issue by herself? Has she stopped treatments because she’s been too debilitated to get herself there? Is she terrified she’s dying and in denial? The reader and fellow co-workers could offer to drive her to and from treatments, couldn’t they? They could volunteer to stay with her during her treatments. They could be there when the side effects sideline her. They could find some positive ways to improve the quality of life for the patient that address her real needs, not her assumed needs. But they need to know who the “go to” person is and coordinate.

The minute anyone reads that a person with a cancer diagnosis has experienced a decline, it automatically becomes a medical issue. Whether it’s the cancer, the complications, or the stress of the disease, it’s critical to properly assess the patient’s condition, setting, support system, and services. No 75-year-old woman should be assumed to have dementia based on the observations of well-meaning, but untrained lay people.

The greatest danger that this 75-year-old woman faces is that she will be placed in a skilled nursing facility by her sibling because it is assumed her mind is failing due to dementia. If the real problem is that her breast cancer has metastasized, she could suffer through what remains of her life. She could be medicated with drugs used to treat dementia and not treated with drugs that would provide comfort at the end of life.

But the one point I would make here is that we don’t know what kind of relationship this 75-year-old breast cancer patient has with her cancer team. For all we know, they have done all the tests, diagnosed the disease accurately, and treated the patient humanely. If that is the case, perhaps what this patient really needs is the love and support of family and friends. Maybe she doesn’t know how to ask for it. Maybe she doesn’t know she can get it. So often, communication is a critical tool for a cancer patient, whether it’s talking to the oncologist or explaining problems outside the hospital setting. That nationally acclaimed advice columnist should have suggested that the reader and her associates find out more about how to help a woman dealing with breast cancer. There are plenty of good resources for that, ranging from The American Cancer Society to #BCSM, better known as Breast Cancer Social Media, formed by the late (and wonderful) Jody Schoeger and her social media partners, Alicia Staley (a great cancer advocate better known as Awesome Cancer Survivor) and Dr. Deanna Attai, a well-respected surgeon on the UCLA Breast Care Team.

I mentioned Jody Shoeger because I had the pleasure of interacting with her at a cancer blogger conference out in Arizona several years ago. She was the epitome of a wise and caring counselor for breast cancer patients, often reaching out to those who felt marginalized, isolated, and alone. She taught me about making assumptions one day, by correcting me — not all breast cancer patients have adequate support. I will never forget one post from her. She let a breast cancer patient anonymously share her painful personal story of being shunned by her husband once she was diagnosed. I have never been able to let go of that tale. It follows me wherever I go. It makes me determined to speak for those who don’t have the strength or the confidence to ask for help. I owe it to Jody now to share this with you. If you know a woman who is battling breast cancer, don’t throw your money into all things pink. Reach out and help in real ways. Learn what life is like for breast cancer patients and find out what you can do to help improve quality of life for a woman who is struggling. That’s what a real friend does.

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#BCSM advanced breast cancer Alicia Staley breast cancer cancer research Dr. Deanna J. Attai Jody Schoger Women with Cancer blog

Jody Schoger Wants to Make a Difference in the Lives of Women with Cancer through Social Media

In my continuing effort to provide resources and support to cancer families, I would like to introduce you to Jody Schoeger. Her blog, Women with Cancer, has some wonderful insight into how cancer affects women and their lives. It’s not just about living with cancer. It’s about living life out loud with cancer.

What would you find if you met Jody in person? I was recently lucky enough to have that pleasure. We actually first talked on a little putting green in Arizona. My first impression of her was of a real Texas dynamo in a tiny package. Fit, funny, and even feisty when it comes to cancer, Jody’s warm personality comes shining through every step of the way. Her ready laugh and her obvious delight when making a decent putt put her in the category of social powerhouse. But it’s her work with cancer survivors that best defines her.

When I approached her about doing an interview for my cancer blog, I had enough good sense to ask her to be straight with me. I wanted to provide the information that she felt was most important for cancer families. The great thing about Jody is that if you throw her the ball, she’s more than capable of making a winning shot. I thought I would focus on ways to help men understand the issues in having a wife or girlfriend with cancer. Jody wisely pointed out that not every woman has a man to hold her hand every step of the way:

“There are a few things to consider. Not all women with breast cancer are married or in a committed relationship; so the questions need to better reflect the audience. There’s a large percentage of single parents and and/or divorced single women who also are navigating cancer.”

That answer is one of the reasons I felt comfortable posing questions to Jody. She speaks from the heart and the head. She’s always looking for new ways to reach out to women with cancer.

If you were to go to Jody’s blog, you’d find she covers related topics ranging from a very poignant letter from a breast cancer patient grappling with the effects of her treatment on her marriage to the latest news on the National Comprehensive Cancer Network Survivorship Guidelines to the effects of chemo brain on the mind and ways to improve cognition. She also has a great list of other cancer blogs that will increase your ability to find information and inspiration about cancer. Resources are so critical when you’re feeling overwhelmed about cancer.

Jody’s professional background is impressive. If anyone is capable of creating an online cancer community to support, empower, and motivate women with cancer, it’s she. With more than 25 years of experience in public relations and communications in health care, science and education, she brings a lot to the table. Diagnosed with a locally advanced breast cancer in l998, she pushed herself to survive and thrive, and now she offers women sage advice and information. I could list all of her impressive credentials, but the truth is that what she says stands on its own.

One thing I do want to mention, however, is that Jody is one of the founders of #BCSM, breast cancer social media. The virtual meetings take place on Twitter every Monday evening at 8 pm CDT.

bcsmcommunity.org.

(Alicia Staley and Dr. Deanna J. Attai are the other two brains behind this social media chat fest. I also met Alicia, a three-time cancer survivor, and I’m hoping to interview her at a later date.)

Sara: If you were to address the caretaker of a newly diagnosed woman, what are the most important things would you want him or her to know about breast cancer and its treatment?

Jody: From the point of diagnosis, both the caretaker and patient are in new territory and changing roles. There’s no doubt that cancer stresses a relationship. So first, process the shock and your own feelings as honestly as you can. Then it’s important to determine your strengths as a caretaker. Think about how you can best support the woman you love. Be honest with yourself and with her. As she has a treatment plan, and medical appointments begin to fill your calendar, think about your own plan to take care of yourself. Breast cancer treatment can go on for up to a year or longer. Your own efforts to maintain “islands of free time,” for exercise, a round of golf or other enjoyable activities are incredibly important. Many of us go into Super Hero mode when a loved one is diagnosed. That’s all right for a short period of time but not workable for the long term.
Sara: As someone who was a caregiver for a lung cancer patient, I can attest to that as being great advice. I think we really do have to face our own feelings as honestly as possible and to process them, so they make sense. A number of caregivers charge forward into the role without really understanding how complex it really is. If you don’t know what you can give, you can’t really find other members of the caregiver team to fill in the blanks. And you’re also right on the mark about Super Hero mode. This is a marathon, not a sprint, and we have to be prepared to go the distance.
What steps would you advise newly-diagnosed women to take to help them prepare for what lies ahead?

Jody: 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.


The next thing to do is organize for illness, as I call it. I immediately got a large binder to hold information and medical reports. Then a friend created an email list to keep coworkers informed. Others find starting a blog is helpful. The key is that you reorder your priorities so that taking care of your cancer is at the top of the list.

Sara: One thing I learned from speaking to breast cancer patients is that treatment really is complicated when compared with other types of cancer. It all depends on what type of breast cancer a woman has. Some are more aggressive than others. And this is a disease that often is affected by hormones. It’s also a very intimate kind of cancer, which can change our perceptions of ourselves as women and sexual beings. Your point about rushing into treatment without understanding the big picture is well-made. If women aren’t at immediate risk, it makes sense to delve into all the information and weigh it before choosing the right course of action.

I’ve heard a lot of women say that “men just aren’t there” for them during cancer treatment, or fall short in terms of offering the right kind of support. Are there ways for women to close the gap on what husbands and boyfriends can’t do for them? Would a “cancer mentor” or “cancer buddy” make a difference?

Jody: This question is problematic in a sense. It’s not realistic to expect any partner to meet all of our needs even when we are well. Women learn from and lean on their friends all the time. This is the same in cancer. Finding other survivors is key. They can make good suggestions and provide reassurance that your family can’t. There’s nothing like walking along with someone who has literally worn the same shoes. Today with interactive platforms like Facebook and Twitter it’s easy to connect with other breast cancer survivors.

Sara: That’s true. With all of the complex realities of cancer, it really does help to speak to other women who have “been there, done that, and got the cancer tee shirt”. I’ve had other cancer survivors tell me that their families just “didn’t get it” when it came to the right support. Being able to reach out to experienced cancer survivors is very helpful. I’ve found that very few people who have gone through treatment are unwilling to share insights and offer solid advice. It really can demystify the process.
Women are so often the caregivers in the family, yet during cancer treatment they need their own nurturing. Are there strategies to help them get their own needs met and lose the guilt over what they can’t do for other people?

Jody: This is often the hardest for a woman if there are still children at home. At the same time, I’ve seen many families navigate this successfully. The shared characteristics were a sense of teamwork and excellent communication. So there aren’t any strategies per se, but a shared realization that getting through treatment is something that is tough and can be managed. It’s important for everyone involved to maintain a sense of daily life and order. And the funny thing about cancer treatment is that you aren’t sick all the time. There are good days and bad days. Once you learn how to best care for the low points following a chemo treatment many things fall in place. It’s also important to distinguish doing from being. You certainly can still love and be with your loved ones, that doesn’t change. But if a woman’s sense of self is tied up in everything she “does” for others then family will need to reorder its expectations. All of this is about facing change.

Sara: Maintaining a sense of daily life and order is all about imposing structure in the face of the chaos of cancer. Sometimes people surrender to the impact of the disease and that begins to drive the day. By taking charge of home life and making it as normal as possible, families are able to remind themselves of what is still “normal”, so cancer isn’t in charge.
I also like your point that you can learn to navigate through the low points of chemo. It helps to recognize the patterns of side effects and when they will pop up, so that you can make the most of the days when you are likely to feel good.

You make a valid argument that the whole family may have to “reorder” its expectations of a woman with cancer. We women sometimes take on the “doer” role and find it hard to surrender that because we get so caught up in “the rules” about who and what we should be. That can be a trap for many women, but it also sounds like families can get past that by letting go of  those expectations and working to help a woman get through cancer treatment. What’s the most important thing cancer taught you about life and love?

Jody: Cancer reorders your priorities. There’s no doubt about this. Nothing gets your attention faster than a potentially life-threatening condition. What I’ve seen is that the majority of women discover how strong they truly are. Early on, a lovely woman passed this on to me, “If you didn’t know how much you were loved before, just hang on. You’re about to find out.”


Those words have never left me. What a gift.

Sara: Truer words were never spoken, Jody. When cancer strikes a family member, it’s a chance to realize what matters most in life. We can let go of the petty nonsense and focus on using what we have to make a difference in this world. It’s hard to squander our lives when we know how precious time is, love is. Thank you so much for allowing me the opportunity to pose these questions. I hope women take heart from your words of wisdom and seek the support they need.

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advanced breast cancer breast cancer cancer caregiver caregiver education caregiver psychology family caregiver ovarian cancer

Can We Improve How Men Provide Care to Cancer Patients?

I’m a big believer in men. They can do some amazing things. Lord knows they’ve achieved some wondrous feats in life. But when it comes to being cancer caregivers, let’s just say the jury is still out on that, especially when it comes to women and “intimate cancers”, like breast, ovarian, cervical, and even colon. Nothing breaks my heart more than to hear a group of breast cancer survivors talk about the rejection they experienced from the men in their lives. It makes me want to go out and rattle some cages, asking, “What the $#@&* is wrong with you? How could you do that to her? Don’t you know how fantastic she is?”

Why is this? I have my own theory. We are, by nature, sexual creatures. We imagine, we fantasize, we dream of those perfect moments on some sun-drenched beach in the middle of nowhere, where wrinkles and cellulite don’t exist and “close encounters of the flesh kind” lead to wild and crazy passion, legs up in the sand. Real life very often doesn’t look like that. Emotions can get messy, especially when cancer’s involved and there’s great uncertainty in prognosis and diagnosis.

As a family caregiver, I’ve seen both sides of the story and I’ve reached a conclusion. Men are capable of doing more to really support the women they love and women need to appreciate that men provide that care differently. What does it take? Education on both sides. Best time to do it? At the beginning, in the early days of treatment.

Men need to know what the women they love are facing. How do they get that information? Let’s be honest. Most guys aren’t going to go to support groups to sit around and listen to emotionally-charged conversations about cancer. By nature, men tend to be proactive when it comes to problems. They’re constantly on the prowl for fixes. Cancer? Not always turned off at the flick of a switch. You can’t do X and be sure you’ll get Y as the result. You can knock your head against that tumor till the cows come home and you won’t put a dent in it. While most men are action-oriented, cancer support for women is often far more emotion-oriented. It can feel like oil and water mixing. Someone’s bound to slip on that slick and get hurt.

Men often process information and situations very differently than women do. Maybe that’s our biggest mistake as women, that we assume if men really love us they’ll do things our way, to please us. As someone who used to work with male psychiatric patients, I can assure you that it’s a hurdle not really worth the effort. The human brain is what it is. It’s wired as it’s wired. You can’t suddenly change the system. If the connectors and receptors in the brain don’t work that way, no amount of wishing will change that. Men are what they are, just as women are what they are. Your relationship up until cancer hits is pretty much what you might expect through treatment. Some men are talkers, but most aren’t. If the man who loves you does for you, you can probably go on expecting that. But if the man you love tends towards narcissitic behavior, if you have to fight your way to the mirror every morning, cancer’s not going to improve that, and your body image is probably going to take a hit over it.

We can and should take advantage of the way men tend to think to improve how they care for the women they love. I know a lot of men who are “hunters”. They may not sit around talking about their wives and girlfriends going through cancer treatment, but they will and do go on the Internet in search of information and answers. They will and do read personal accounts that provide a lot of technical information and concrete advice on what to do and how to get through it. Men need proactive tips and encouragement for helping their wives and girlfriends through cancer.

In other words, maybe it’s time we “train” men to be cancer caregivers according to their learning styles. Perhaps by taking an overwhelmingly emotional approach, we’ve failed to tap into the strengths that men can and will bring as cancer caregivers. Men are, by nature, usually good at “survivor” mode. They are body-observant. They eat, sleep, and hunt for what they need to live. Cancer is a very emotional disease and very often our introduction to it is chaotic and confusing.

What if we could reach out to men in the early stages of providing care and help them to find concrete ways to do it, ways in which they can make a positive difference for the women they love? I’ve had more than one man tell me over the years that women should never pay as much attention to a man’s words as his actions. Men will often say what women want to hear in order to get what they want. In cancer care, that’s not always a smart move. Women can feel tremendously betrayed when the words are hollow and empty.

In my conversations with men over the years, I’ve drawn a conclusion that may come as a shock to any woman who has felt her man didn’t care. Men care profoundly, deeply, sometimes even madly about the women they love and even the women in their families. But cancer makes men feel utterly powerless, and men don’t normally do “powerless” well.

I’ve seen that frustration up close with a man whose sister had a double mastectomy. His anger, his rage at what she went through in battling the disease was close to the surface. I could observe how raw this wound was for him. Why? Because he was so used to being a protector, the big brother who always looked after his baby sister. There was little he felt he could do for her as she faced this nasty foe. This caring, compassionate, strong man didn’t have the tools he needed and it infuriated him. It wasn’t that he didn’t care, it was that he cared so much, it was overwhelming. What happens when men have a much more intimate relationship with the women they love? What happens when husbands and boyfriends face that same powerful wall of emotions? Very often, as a matter of self-preservation, they turn off their emotions and just move on automatic pilot. That can come across as cold and unfeeling when the truth is they care too much to let it out.

I’ve heard women express their disappointment in how husbands, boyfriends, and even male relatives deal with their cancer. I definitely get it. Every woman wants to believe that no matter what happens to her, the men she loves will stand by her through the battle. So, how can we make that happen better?

Maybe we need to dispense with the myth that men and women aren’t equal as family caregivers. Just as male nurses and female nurses are equally capable of providing quality care in the medical setting, and male and female physicians must handle the same physical patient issues with equal competency, there’s no reason men can’t be wonderful caregivers. I still think that the style of care tends to be different, with some basic shared traits. Just as we used to assume that all women make great mothers, cooks, and homemakers, we have learned that’s not the case. Women aren’t born to be good with kids. It takes experience and education. Many of the women in my generation grew up taking care of siblings, neighborhood kids, and even worked jobs as teenagers that put us in the position of having to cope with runny noses, wayward children, and unexpected disasters (Lord knows I’ve pulled my share of kids off of roofs and stopped some of the world’s dumbest stunts just before that final idiotic ride off the ramp). We tend to forget that we learned how to care for the people around us. By the same token, I’ve known some women who were absolute disasters as caregivers. They were so anxious about their own needs, they weren’t capable of nurturing another person. A good caregiver is strong, with a thick skin, a hard head, and able to weather the storm, but you get that way by training, not by chance.

What does it take to be a family caregiver? Education, not estrogen. An understanding and an appreciation of what men and women can and can’t do. We should utilize men in the caregiver situation according to what we can teach them to do better. And we should recognize that, while they have strengths that can and will support women with cancer, they are not going to suddenly sprout wings and turn into cancer angels.

One of the things I always try to emphasize as a caregiver educator is that every patient needs to bring a team to the caregiver table. Every member of the caregiver team is going to be different from the other people involved, and folks will bring what skills they have to the table. The trick is to use the raw ingredients to make a complete meal, and that often means gaining new skills as you go. It’s important to recognize that every patient is different because of diagnosis, prognosis, energy level, independence level, emotional quotient, and a myriad of other factors. But if we begin to understand how to teach men to be better caregivers, not by trying to turn them into the female equivalent, but by using them in ways that make sense according to their capabilities, we should be able to produce some amazing male caregivers. It’s all about bringing out the best in the men who will care for these women with cancer.

Bottom line? We have some amazing wives, mothers, sisters, cousins, neighbors, and friends who have the capacity to survive cancer, and we should all strive to make the quality of their survival the best it can be. There are a lot of good, decent men out there who feel completely lost in the cancer fight. We can and should give them directions on what they can do better to support the women they love, through educating them in ways they can utilize to connect physically, mentally, and most importantly, emotionally. There will always be men and women who live life superficially, who can’t get past the scars, but for those people who hold promise as cancer caregivers, let’s empower them.

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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.

Categories
advanced breast cancer breast cancer cancer caregiver Cancer Caregiver Roles: What You Need to Know caregiver education Dr. John Garnand

Real Men Don’t Run — Dr. John Garnand’s Role as a Cancer Caregiver, Part Two

Part One — “Real Men Don’t Run”

This is a continuation of the February 28, 2013 interview I did with Dr. John Garnand, PhD, who cared for his wife, Susan, over nearly a decade as she faced breast cancer. If you missed Part One, I encourage you to check it out. Dr. Garnand brings a new prospective to caregiving that not only will open your eyes, but your heart.

Sara:

You really drill home the point for cancer caregivers that it’s critical to maintain records, not just to track a loved one’s health, but also to handle the financial issues. When you discuss the economics of cancer management, you point out there can be errors in billing, differences in insurance coverage in terms of out-of-pocket expenses, and even talk about how the loss of a salary during treatment can have a profound effect on the household. How did it help you as Susan’s caregiver to track so much information?

John:
 
First of all this is probably the most basic criticism that people make against our Healthcare System. Its accounting is impossible to understand and interpret. Errors occur. Everything is coded, and errors slip in.(See pp.56-57).  We were billed over a year later for a procedure (birthing) that was not possible for someone who had a hysterectomy.
 
Sara:
 
Yikes! It shows that vigilance is important when handling all the medical expenses. This is especially important for families handling diseases over the long haul, because every dollar counts. I think there’s a tendency for stressed caregivers to just assume all bills are legitimate.

John:

The tracking of information can be tedious, but occasions come up where it is the only way to forestall a real problem.
 
Sara:
 
But you’re not just advocating that caregivers track the financial issues associated with medical bills. You make a good point that caregivers have a very crucial job in helping their loved ones during treatment.
 
John:

Tracking of information is especially critical when the patient is left alone while her caregiver has to leave the home to go to work. It then becomes the patient’s responsibility to take the right meds, at the right times. We went to a family reunion in Illinois. It was a long drive. I had to wake her up to take her Tykerb (5 pills, hour before breakfast), and recorded the dosage consumed. She went back to sleep. She woke up mid morning, and rushed over “to take her meds.” She had forgotten we had already done so. These are chemotherapy medications, and an overdose could create toxic shock, or a fatal reaction. Luckily, I showed her the record.

My wife was consuming 16 different medications a day, at different specified times during the day. If we had not kept physical records I feel very certain we would have had to face a disaster from overdose.
 
Sara:
 
I found that to be true also, John. I had a system to make sure the right medications were given to my mother at the right time and in the right combination.
 
When a patient is taking multiple medications, it gets confusing for patient and caregiver if it’s not tracked. We tend to think we’re being overzealous when we start to record details of caring for our loved ones, but it’s really all about patient safety. Hospitals and health care facilities tend to be meticulous with their medication disbursement, to avoid medication errors.
 
Studies on home care have suggested that one in three patients is vulnerable and the risks increase with the number of medications used. For cancer patients who have “chemo brain” due to the neurological effects of the powerful drugs or who are under mental or emotional duress during treatment, having a caregiver manage the medications is a great support. It’s one less thing to worry about, especially if it’s difficult for the patient to concentrate on details.

 John:

Another aspect of record keeping is every time you go to a physician’s office for any reason; you are expected to fill out the patient’s medical history and medications.
 
Sara:
Having a copy of the current medications is absolutely imperative, especially if patients are seeing many different doctors. It’s important to make sure that everyone is on the same page. I also used to do this for my mother, and I found that adding the over-the-counter medications was important, too, since some of them interfered with the prescribed drugs.

John:

If you can record these ONCE ahead of time, you can run copies and include them with the required paperwork—saving time and frustration. This is the logic behind Exhibits 1a and 1b.
 
Sara:


A lot of men find it a daunting task to be caregivers for the women they love during cancer treatment. I think a lot of them feel powerless to have a positive outcome. Cancer is such a tough opponent. You clearly took on the role as Susan’s champion and tackled some pretty important issues as a spouse. I appreciated what you said when you talked about the importance of finding new ways to express intimacy and that cancer can “get in your face”. You sound like a man with a plan. If you were to coach a team of men who were thrust into the role of caregivers to the women they love, what would your pre-game speech sound like and how would you convince them they can get the job done?

John:
 
Wow, Sara! How on earth am I to answer this question? (A good thing.) You have correctly picked up on the underlying motivation I had when I wrote these parts of the book.

Women tend to have experienced some aspects of nurturing and caregiving in their experiences of managing the family and children. But men are programmed to the world of work, of competition, of fighting or sports. They are repulsed to change a dirty diaper. This has a cross-cultural aspect as well….as I have found out with my work on a Spanish translation of this Caregiver book. I really had the motivation to write this section to almost shame the blockheaded husband into a nurturing role.

I had the crazy idea I could make some headway by example, better than by argument.

Sara:
 
It’s understandable that men might be resistant to the idea of being caregivers for the women they love, but I think you’ve put yourself out there as a great role model. If you think about it, there’s really nothing “girlie” about the role of cancer caregiver. It takes strength and courage. So, John, how would you rally the troops?

John:
 
The pre-game speech would probably be like this—-This is not just her struggle, her fight. She needs her partner now. This requires a team effort, a team commitment. You are now involved in living out your vow to her—-“in sickness and in health” Now is where you live out “…it’s all about her.” Now is your time as well.

Sara:
 
It really is all about commitment, isn’t it? And teamwork. I think men need to know that this is a very noble, decent thing to do. It’s getting into the action, instead of hanging around on the sidelines. What else would you tell them?

John:
 
Now is your call—now is your challenge to live this out. This is the finest hour of your marriage. Now is where you man-up.

Sara:

And what would you say to the women in their lives who need care, who might be reluctant to trust men with the intimate issues of cancer and the tough side effects?

John:
 
I think the answer to this question is bound up in the quality of the marriage relationship. If the guy has always been controlling and estranged from intimacy, the patient may have a hard time with issues of intimacy, or side effects.

Our relationship was very different. I found out quickly that the more independent and free I could make her, and support her decisions, the deeper her love became, the deeper her response—because it was freely given. The “freer” the “deeper.”

Most relationships don’t go this far. In her words, we made a “….mystical, musical, magical life.” A life where we looked upon everything as an adventure, not just a journey together. Laughter, day and night. I guess, I hope that if we can model this kind of living, it would create joy in our world and spread to the community.

Sara:
 
Susan comes alive through the pages of your book, in the ways you describe her, and in the ways you describe your efforts to make her life as comfortable and meaningful as possible. She clearly inspired you to be a better man.
 
John:

When she died, a huge part of me died with her. I tell people, I would have instantly traded places with her if I could. I would have accompanied her to show her the way, but I could not find the Lilly pads on which to step.

I have been thinking about the Caregiver book. It was cathartic to write this book. I hoped we could help other cancer couples became ” …more loving and more proficient” in their care of each other (p.3). Truth is, I had to write this book. There was no noble or generous motivation. I had to alert people to the financial devastation that was staring them in the face, and I had to tell them her story, at least in vignettes. Maybe the next book should be autobiographical “Susan’s Story”.
 
Sara:
 
I’m looking forward to reading that. Obviously the two of you shared a lifetime of learning about each other, and cancer didn’t stop you from continuing to grow as a couple.
 
I think the problem for a lot of cancer caregivers is there is such a learning curve as they move through the process. Not everyone will immediately understand all the issues involved in helping a loved one get through it. Couples will face the disease together with the strengths and weaknesses they share, some more successfully than others.
 
John:

I guess I don’t have a real answer for you.  It depends….on a case-by-case basis. I have the hope that somehow, by the grace of God, the messages in this work will be useful to those who read it. That, in the final analysis, is all I can ask. My prayer for couples experiencing cancer, and traveling the cancer journey together, is for their peace.
 
Sara:
 
I think a lot of couples going through this journey will be heartened by your approach, John. It’s not only inspiring, but also very comforting for loved ones to know that there are steps cancer caregivers can take to provide comfort in many ways, whether it’s making sure that the roof stays over your head, that you’ve taken the right medications in the right dosage, or that there’s still some joy to experience in life. Cancer patients will appreciate your efforts to educate and inform spouses.
 
I also think that caregivers who are stumped on “What now?” will find some positive focus and be able to begin to develop a strategy, not just for the short-term, but also for the long haul, the “Where now?”.
 
You and Susan experienced the ups and downs over the better part of a decade, through the good times and the not-so-good times that cancer management brings. I think your ability to write this book is a testament to that dedication and commitment to each other. I hope you continue to share with cancer families.

Notes on John and his philosophy, provided to me for this interview:

John believes we become what we learn. He believes that no one is fully prepared when the comes to becoming a caregiver to a loved one who has been diagnosed with a major disease. He feels that Caregiving is “on-the-job-learning” which lead him to writing his book, Cancer Caregiver Roles: What You Need to Know. The book is his effort to pull together all the information that he has had to learn over nine years of attending to his cancer patient loved one. It is his hope that this compilation will make it easier for other Cancer Caregivers faced with similar circumstances. John’s loved one taught him everything in life that is important to learn. And he now believe that the acquisition of wisdom is just being open to learning, and that anything good that we have learned will never be completely lost.  In its existential context learning defines our lifetime.
 
Dr. John Garnand’s Cancer Caregiver Roles blog

About the author:

John Garnand has spent a lifetime as a teacher. Most recently, John retired from the Leeds School of Business of the University of Colorado at Boulder. For twenty-one years, he was an award winning instructor in the general areas of business strategy, management operations, ethics, and public policy. While at the University, he established the Multicultural Business Students Association, to help disadvantaged students compete and excel. Before this, Dr. Garnand held the position of Vice President for Administration at Regis University in Denver, CO. He was also a graduate faculty member in the Regis University Masters of Business Administration (MBA) program.

You can find John’s book at these retailers:

Amazon  Softcover $8.99 E-Book $3.99

Barnes & Noble   Softcover $8.99 E-Book $3.47

Kobo Books  E-Book $3.49

Google Books  E-Book $3.03

Balboa Press Bookstore  Softcover $8.99 E-Book $3.99

 
Categories
advanced breast cancer cancer management genentech Herceptin Kadcyla leukemia quality of life

What Matters Most for Advanced Cancer Patients?

Everywhere you look these days, there are stories about new developments in cancer treatments. What was once considered a mysterious terminal disease is today a group of many different diseases that function, spread, and are treated in very different ways.

The promotions for new treatments hail these developments and suggest the first real promise of a cure for cancer is on the horizon. People are surviving longer with cancers that previously would have killed them. The disease is now more effectively managed. But as we see all these advances coming in the near future, we need to remember that life is about living. Quality of life matters.

Leukemia is now potentially curable, thanks to a new treatment that utilizes the body’s immune system, still in the testing phase. That goes beyond previous successes in managing the disease with a once-a-day pill regimen.

A new drug for advanced breast cancer has just been approved by the FDA. Kadcyla, developed by Genentech, combines Herceptin with a toxin that not only has fewer side effects, but kills more cancer cells without damaging healthy cells, giving advanced breast cancer patients an average of six more months of survival over other treatments. It’s almost impossible not to be excited by such news, isn’t it?

As cancer caregivers, one of the most important jobs is to keep informed about the newest treatment advances. Why? Many reasons. You might be able to get your loved one into a trial for a promising new drug. You might just latch onto the best new option that extends your loved one’s life long enough to improve survival, especially now that cancer is a disease that can often be managed over time. Cancer isn’t always a death sentence any more.

But cancer caregivers also have another job, that of making sure that comfort is a built-in part of cancer treatment and management. So often, the promise of a cure is the carrot dangled before cancer patients. “If you get through this hurricane and remain on your feet, the clouds will part and you’ll see sunshine again!” Patients go through hell in the hope of a rainbow after the storm. What if they never see the sun again? What if the clouds don’t part and they die before the winds subside? Our goal as cancer caregivers should always be to give our loved ones the best shot at enjoying those blue skies, even if only for a few weeks.

If you’ve ever sat with a cancer patient in chemotherapy and tried to soothe the discomfort, if you’ve ever rubbed lotion on a loved one with radiation burns and felt the heat on the reddened skin, if you’ve ever had to help a loved one deal with painful scar tissue in the aftermath of cancer surgery, you know that dark side of cancer treatment. Sometimes it can feel like we are in cahoots with some horrible band of torturers, out to make our loved ones miserable. We encourage our loved ones to take it one day at a time. We cajole them into sticking with the actions that we hope can make a difference. We offer them solace that sometimes falls short, leaving us feeling guilty that we’re pushing cancer patients to the edge of agony.

Any good cancer caregiver understands that without quality of life, it doesn’t really matter how long a loved one survives. What good does it do for someone to live an extra three months if those months are spent in the hospital, in bed at home, or in a recliner, unable to partake of life? That’s not living, that’s existing.

I was reminded of this earlier in the week, when a relative died. The family was relieved that the suffering was finally over. They understood that the struggle robbed the patient of what mattered most. In the last few months, the descent towards death was swift and cruel. There was no fairy tale ending. Sometimes, even with the best care, it’s not possible to avoid the pain.

As advocates for our loved ones, we should always focus on making life worth living. When we hear that there is a new drug that actually has fewer side effects than the current treatment regimen, which is the case with Kadcyla, we should consider finding out more about the treatment options. But we should also understand the risks. Kadcyla works because the toxin doesn’t become active until the antibodies to latch onto the tumor. That protects healthy cells from unnecessary damage during treatment. On the surface, it all sounds so good, doesn’t it? This is a new way of fighting advanced breast cancer.

By the same token, there are some serious risks to using Kadcyla, including heart and liver damage. That means that it might not be a good option for someone who has already been knocked for a loop by previous treatments. Some long-time cancer patients often have serious heart issues, due to the side effects of chemotherapy. That may make the drug a huge risk for your loved one, especially if she only gains a few months that keep her from living her life out loud.

For many blood cancer patients, the race for the cure is often tempered by the realities of the disease. Many leukemia patients have been treated with a once-a-day pill and they remain in remission far longer than patients a decade ago. Even as researchers tweak the medications and extend life, they are able to find medicines with fewer side effects. That is definitely a boon to quality of life. All the more reason why cancer caregivers should continue to educate themselves on new treatments that might be appropriate for their loved ones. But we should also understand the price our loved ones will pay for the promise of a little more life. What is it worth to try to stay in the game of life? For some people who have bone marrow transplants, the pain and complications can be an acceptable risk. For others, the hardships are too much of a sacrifice. How do we, as cancer caregivers, learn to recognize when to push for more and when to back off?

One of my biggest inspirations for proactive cancer management was a wonderful woman I met in the chemotherapy room when my mother was being treated at a cancer center. A twenty-year survivor, her cancer had popped up all over her body over those two decades, but she was still alive and kicking. I asked her what her secret was and she shared it. She learned to recognize the symptoms as soon as they occurred. She knew the signs that cancer was growing inside her again, so she would get herself checked out. And every time one cancer center would exhaust its treatment options, she would go shopping for a center that was up on the latest treatments for whatever type of cancer she had. She was motivated to survive. She had a good caregiver in the man she married long ago. But it was always her choice to continue to fight.

And that is my message to all cancer caregivers. As much as we can love, we must recognize that cancer patients are the ones who are taking all the risks, enduring all the hardships of the medications and treatments. At every junction of the cancer management road, we should be asking, “What do you want to do?” We should never think that, as the wind beneath the wings of a loved one, we have the power to propel an advanced cancer patient above the storm clouds. Cancer touches every patient in unique ways, many of which are uncomfortable for the sufferer. Our most important responsibility is to help our loved ones find the best comfort possible, through medications, nutrition, and meeting the physical needs that arise from treatment and side effects. But comfort is more than just physical. It’s about understanding that the mental anguish and the psychological worries can sometimes be more overwhelming than any physical pain.

If we start each day with the idea that we will look for ways to make life more palatable for our loved ones, we temper more of the overall negative effects of cancer and cancer treatment. Advanced cancer patients actually survive longer with palliative care than aggressive treatments that knock the wind out of their sails. That, in combination with newer drugs that have fewer side effects, may make the difference between existing and enjoying the life that’s left. If one day of joy is worth more than gold to you, remind yourself each morning as you rise that cancer management is about living life. Help your loved one take advantage of new treatments that make sense. Don’t fight for the sake of survival. Fight for the joy of blue skies, belly laughs, and beautiful moments that warm the heart. Make life matter.