Sunday, April 28, 2013

Can't Make a Real Difference for Cancer Families? Go Wait in the Truck -- Part Three


I recently turned down an opportunity to be a guest on a cancer show. I had my reasons for doing that. So many cancer families feel alienated and alone, abandoned in their time of greatest need. I believe we can and should do a better job of helping those with cancer and the people who love them to connect. We do that by addressing the real issues. There's no magic pill that will make things better for cancer families, but with real caregiver education and a concerted effort, I do believe we can bridge the gap for patients and their families. If cancer patients are now living longer, those lives can and should be filled with meaning that rises above the ugliness of the disease and its determination to destroy the body.

Sometimes it seems that everywhere you look on the Internet and beyond, you hear the word "cancer" bandied about -- it's pink, it's popular, it's presumptive. Not all people who utter that word have the same depth of understanding about how it truly impacts lives. When you see families struggle over the years as a loved one goes in and out of cancer treatment, you begin to understand how critical education is to a cancer caregiver. A good cancer caregiver is always one step ahead of the disease, aware that things can go bad at any time.

I've talked to a number of people who have had repeated bouts of the disease, and the one image that stays with me, the one real truth I take to heart is this -- you have a far better shot at staying around and enjoying your life if you don't keep yourself stuck in denial. Cancer is cancer, especially when it's in the genes. That means cancer could come back at some point, even ten years down the road. When you know this as a cancer patient, it usually changes how you live your life. You change your decision-making processes to factor that in. You may even change your outlook on what you want to accomplish and how you want to get it done. Cancer caregivers must understand the changed reality of their loved ones -- it's more than just the physical effects of the cancer. It's also the mental, emotional, and sometimes even spiritual impact that alters a cancer patient's world, one that needs to be appreciated for what it is -- the sometimes dreaded "new" normal. How can we help cancer patients feel as safe and secure as possible under these circumstances? That's what real comfort care is.

Here are the questions I intended to tackle on that show. I hope that by the time you finish reading the answers, I will have challenged you to think about cancer caregiving in a new way, to see a new path or a new direction in which you can take that care and improve life for your loved ones.


1. Do different types of cancer require different kinds of caregiving?

Absolutely. For someone who is able to physically function independently, your job may require being there as an emotional supporter. For someone with issues such as chemo brain or who has brain cancer, you may be dealing with mental processing issues, such as confusion, lack of focus, inability to concentrate, or even loss of critical memories. That can have a huge impact on your loved one's personality. Patients with lung cancer might feel like they are suffocating slowly, which will create tremendous anxiety if the physical symptoms aren't well-managed. And for patients with "intimate cancers", such as breast, cervical, ovarian, colon, and prostate, there are often complications that result from our loved ones' new perceptions of themselves and even our own changing perceptions. Scars can be found on the body, but more often inside -- in the heart and mind. Those unaddressed worries, fears, angers, and sorrows will do as much, if not more, damage to the relationship between cancer patient and caregiver as will the actual physical results of the cancer treatment.

A cancer caregiver actually needs some training to do the job effectively. We don't let health care professionals work with patients until they have had training and certification, but somehow it's expected that cancer patients will receive adequate care outside the hospital setting, by virtue of having a caregiver, usually a family member, minister to his or her needs. You don't expect your general practitioner to set a compound fracture -- you want a specialist to do this, someone who handles these types of breaks on a regular basis and can recognize when things aren't right. Cancer caregivers need ongoing training as cancer warrants it. If a loved one's cancer is caught in the early stages and the prognosis is good, that individual isn't going to need much from the caregiver. On the other hand, when the cancer is found at a later stage, is aggressive in nature, or is complicated by other health issues, such as heart disease, diabetes, or affects independence, the cancer caregiver really needs to know the "what next". Without it, you have two miserable people guessing at what might work, what could work, instead of implementing successful strategies that keep them headed in the same direction. That's why caregivers need to understand the type of cancer involved and the most common complications and issues.

2. What's the difference between a serial caregiver and a progressive caregiver when it comes to cancer?

A serial caregiver is someone who has to step in when a loved one's health is challenged and step back when things shift back to the point where independence is realistically viable. It's important to understand what kind of help is needed, to meet the real problems. Serial care is hard to plan for, because a cancer patient may experience a sudden down turn in treatment, or there might be a complication when the immune system is compromised. It's up, it's down, it's up again....This can create problems for both the cancer patient, especially if he or she is still working, and the caregiver. If you know ahead of time that this might happen, you can develop your strategy as a caregiver. You can build your resources list, build your caregiver team, know who you can call on for what and when. That means actually being mindful of your potential issues, whether it's emergency child and/or pet care, home maintenance, volunteers to spot you for respite time, or even who can drop off that gallon of double chocolate fudge ice cream you know is the only thing your loved one craves after chemo. A serial caregiver has to transition to the realization that having a caregiver team, a cadre of helpers to call upon, creates better options for everyone.

With a progressive illness, caregivers must be aware of the fact that over time, a loved one's health will go into decline, eventually resulting in death. It's important to plan ahead, to engage mindfully in activities that will make that journey as meaningful and positive as possible. Too often, when people hear the words "terminal", they assume that life ends right there and then. We all will someday die. We should recognize the potential in having a chance to live knowing that our time is limited. A good progressive caregiver handles the heavy lifting in gentle, kind ways. "What would you like me to do about this? What should we do with that?" Very often, for terminally ill patients, the greatest challenge is overcoming the fear of death and dying. Many people fret away the hours. But sometimes knowing that it's okay to talk things through, having a good listener really wanting to know the answers, a cancer patient can open up about what's on his or her mind, and that's when a caregiver has the chance to make good things happen. We all have a "Bucket List" in us. A good progressive caregiver starts ticking those items off, one by one, by finding ways to enable the cancer patient to continue living life out loud right up to the end.

Serial caregivers get the job done while still living their own lives in their "off-time". You still maintain your social life, your interests, your activities, but you might pause them when your loved one needs care. That's not an easy thing to do when your loved one is terminal and there's no cure possible. As a progressive caregiver, you have to mentally shift your focus away from your own life to the needs of your loved one as the disease changes everything. You don't want to skip the important things in life because there isn't any "do over" once a loved one is gone. It takes real effort to focus on the knowledge that your days as a caregiver will end when your loved one dies. That reality can actually free a caregiver to put his or her own life on hold, for a year or more, with the realization that at some point, it will be time to begin a new life.

3. Do cancer patients with "intimate" cancers (such as breast, ovarian, cervical) have a greater need for peer support?

Honestly? I don't know how we can expect them to cope without that kind of support. Unless you are a cancer survivor yourself, you need to let your loved one mix and mingle with other cancer survivors who have dealt with these specific symptoms and complications. There are many people out there who have been there and seen first hand how it changes one's life. Very often, "intimate" cancers affect more than just one's body image, especially if there has been serious surgery and scarring. It can be tremendously reassuring to have a mentor help you navigate the healing process. You benefit from the wisdom of knowing someone else faced these same problems and made it through. You need to know, as a cancer patient, that there are ways to work around the obstacles.

But sometimes cancer caregivers are a little reluctant to share their loved ones with peer supporters. There can be an over-developed sense of responsibility, that "...it's my job to provide what my loved one needs!" Caregivers should never be the only one to give that care. In hospitals and medical centers, no single physician ever provides all the care. Health care professionals with varying levels of expertise and skills come and go in the patient relationship. Cancer caregivers don't need to feel threatened by the idea that other people can make their loved ones feel better. It's part of the whole-person healing process. Some cancer patients feel like such a burden, they hold back their true emotions from loved ones. We all need to vent our feelings to the point we can recognize what's real and what's not, so we can get to a healthy place. When cancer patients are free to share with others, it often helps them find that perspective. When they are stuck with a single caregiver, the result can be isolating.

Equally important, caregivers affected by their loved ones' intimate cancers need to get peer support as well. It's important to understand how to shift gears emotionally and to recognize that as tough as it is for you, it's tougher for the cancer patient. By finding ways to alleviate your own pain and distress about the cancer, you'll be in a far better position to really help your loved one. Talking to caregivers who have successfully navigated these mine fields can be tremendously empowering.

4. How does guilt get in the way for healthy cancer caregivers?

It's survivor's guilt that gets in the way most often. We feel bad that our loved ones are suffering, so we try the "misery loves company" strategy. If we suffer alongside our loved ones, they will know how much we care, won't they? Cancer patients often feel guilty enough, and when they see their loved ones declining, it's just an added weight on their shoulders.

Sometimes cancer patients can feel left out and resentful when they can't participate in normal activities that their caregivers enjoy. When I left for respite time, I often took my camera with me into the woods or up the mountain. I shot photos of interesting things I thought my mother, the nature lover, would appreciate. She got to see them when I returned home. For her, it mattered that I was still thinking of her when I was out in the "real world", even as she was stuck in her recliner. She got to see what I experienced, even as she knew she didn't have the strength to make the trip herself. Sometimes it's reassuring to know that caregivers aren't "escaping" when they take respite time. If you need to "get away", it can trigger panic in a cancer patient that you want to abandon him or her. There's a difference between healthy respite activities, that leave you feeling refreshed and reinvigorated, and that desire to jump ship. We caregivers all have our moments of feeling like fleeing. That's why you need your own support team, to talk you through it, to help you find solutions for that sense of being stuck. As much as caregivers feel their own lives are curtailed, it's nothing compared to what cancer patients can experience.

Caregivers need to recognize that there are still ways to help cancer patients feel better, even if they can't be made better by medicine. How many times have cancer patients been asked, "How are you feeling?" So often, the answer is, "Not so great." Some people want to know. Some don't. And some people just can't cope with sick people. That's where the isolation begins for many cancer patients -- when the reality of cancer is that you just feel crummy. A friend was devastated by the obvious change in a cancer patient she knew. She didn't know what to say. Do you ask? Do you ignore? A wise counselor told her this: say "I am so happy to see you." Those words can and do ring true for a cancer patient. It says, "Regardless of what's going on with your cancer at this moment in time, I am glad you are here." In the end, all anyone really wants is to feel connected to genuine warmth and affection, isn't it? That way, it doesn't matter how a cancer patient looks or feels. What matters most is that the cancer patient still has people who care.

5. Why is communication between cancer patient and caregiver a critical tool in maintaining quality of life for both?

If a cancer patient can't be honest with a caregiver, how will he or she get the right kind of help for what's ailing the body, the mind, the heart, or the spirit? Some people just don't handle a loved one's cancer well. When a caregiver is so emotionally overwhelmed by his or her own perceptions and misperceptions about cancer, or there is a long troubled history between the two, that cancer patient is going to experience a lot of frustration in not being able to effectively communicate his or her real needs.

Some of the most successful relationships I've seen between cancer patients and their caregivers are the result of the caregivers "getting" their loved ones. When you feel understood as a cancer patient, when you can voice your fears, frustrations, or even anger to someone who is genuinely looking to find ways to make you more comfortable, you begin to develop trust for your caregiver. Caregivers really have to have thick skin sometimes. You can't take the things your loved one is saying to heart, or feel wounded. It's important to recognize when emotions are talking, and help your loved one work through them. Sometimes you have to step back and let a cancer peer step in. Sometimes you have to let your loved one vent without trying to "fix" it all. Very often, cancer patients need to become aware of their fears, and they do that by blurting things out in the heat of the moment. When the dust settles, the real issues begin to surface. And then there are those times when you really need to be honest with your loved one, to admit you don't have all the answers, but you're committed to finding what will work. It's important that your loved one believes your efforts are genuine, even as you seek the appropriate answers.

6. Why do caregivers need to know what comes next for their loved one in terms of prognosis and options?

If you have no clue, you can be completely broadsided. I liken the need to know to storm preparedness. If you know there's a chance that a hurricane can hit the coast, you can board up the windows, sandbag the perimeter, and get your food and water supplies ahead of time. You can get a generator, learn how to use it properly, and even plan an evacuation route should the storm turn more dangerous. We all can agree that's a sensible course of action in the face of the potential for such a weather event. So, too, should we do this for cancer patients. It's not that you are predicting a turn for the worst for a loved one. It's that you're educating yourself as a caregiver to the potential. You're getting prepared. That means that if you begin to see signs that pressure is building up, you can act.

A number of cancer patients have told me that they fear every time they think they're seeing changes in their bodies. Is that a new lump? Is that pain in the ribs now bone cancer? Is the forgetfulness an indication that cancer spread to the brain? Every day, cancer patients have to cope with new or existing fears about the disease. A cancer caregiver who is prepared can start to poke and prod information from the cancer patient, can be the supportive listener who says, "Let's get it checked out." And a really good cancer caregiver never poo-poos anything that a cancer patients says. We need to accept what our loved ones are telling us, even when we don't want to think the cancer has spread. It's important to recognize that when new symptoms seem to arise, very often these issues are just normal body changes. But for those few occasions they are something more sinister, we need to encourage our loved ones to act.

Every long-time cancer survivor I have ever met has one behavior in common with the other survivors. They all are proactive in treating the cancer. Some get to the point where they can actually recognize the tiniest of changes and they get right on it. We need to realize that being aware, as scary as it might be, usually gives our loved ones the best shot at not only having a longer life, but a better life. It's not just about surviving with cancer. It's about thriving with it.

7. Why is palliative care not just about death and dying, and how can it help cancer patients to survive and thrive?

I wish we could change the name from palliative care to comfort care. Palliative care has somehow become synonymous with death and dying. The reality is that pain management, symptom management is all about keeping cancer patients as comfortable as possible. It actually has been shown to lengthen life, rather than shorten it. Some cancer patients get treatment aimed at cure right up to the day they die. They spend all of their time getting whacked by chemotherapy, radiation, anything that will provide them with a potential cure. Patients and caregivers benefit from a reality check. If the cancer has spread, if there are new symptoms, sometimes it's okay to switch from focusing on a cure to focusing on comfort. For some cancer patients who are at the point where there are no new miracles, enrolling in clinical trials and trying untested drugs may be a viable option. If a patient gets palliative care to handle the difficulties, it's easier to partake in that opportunity. That's a decision that every cancer patient needs to make by being fully informed about the status of his or her cancer. As terrible as that sounds, sometimes really good things can come of it. I've met cancer patients who were diagnosed as Stage 4, still alive more than five years later. By being as painfree and healthy as possible, these patients can better tolerate new treatments that offer the promise and hope of disease management, if not cure.

Palliative care is all about easing the distress a patient experiences, whether it's physical, mental, or emotional. Managing nausea means food can be better ingested and digested. Dealing with nasty side effects, relieving the discomfort, can actually enable a cancer patient to better survive treatment. And sometimes cancer patients really need help to handle the anxiety of cancer. An agitated patient is less likely to comply with medications and nutritional needs. Some patients may be so depressed, they may assume death is so inevitable, they give up before the cancer treatment has had time to work. For them, getting that emotional roller coaster on a slower, less terrifying track, can mean the difference between trying to survive and abandoning all hope.

We should always strive, as cancer caregivers, to err on the side of being human. We should ask ourselves about how much we know of our loved ones, how they best function, what matters to them. Our goal is to enable them to be true to their real selves through the cancer experience, and how we get there is important. We should never just give lip service to cancer patients. Our words should matter. But even more important, our actions should speak volumes. Every move we make should send the message that we stand with those we love and we are willing to go the distance to get them the right kind of care that will make the most difference for them.

Friday, April 26, 2013

Can't Make a Difference for Cancer Families? Go Wait in the Truck! (Part Two)

A Note from Sara M. Barton, The Practical Caregiver:

I recently met an incredible woman who offered me insight into what life is like for someone living with the disease. I found her to be a great motivator and a wonderful teacher -- she makes such an effort to reach cancer survivors and to improve their lives in meaningful ways. That old cliche aside, this person really is a gift to the world. An amazing, sweet, thoughtful, funny package of wisdom and kindness, all rolled up into one very decent human being.

Life isn't fair. Just when you think it's all working out just fine, that word comes back again. Cancer. How I wish it were not so. How I wish I could make it better for her. The truth is we don't really know where the road will take her, but we do know one thing. She will never be without love. Come what may, we are there and we care.

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Part Two:

I once dumped a social media and web designer for his unethical behavior. He actually thought it was appropriate for his clients to fabricate their credentials. As I sat in the trendy coffee shop and listened to his speech on how to embellish my profile for my website, as I watched that little shark smile glisten as the light landed on those pearly whites, I thought long and hard about how much I was willing to compromise myself. What was I willing to do to make a difference for families providing care to loved ones? I wasn't willing to pretend to be something or someone I'm not.

I also dumped a business advisor, who made the mistake one day to, in his words, give me "a little tough love" -- I had to formulate my business plan with the idea that I was going to build a local company, which I would then sell to some business people who had a vague background in managed care, no real commitment to caregiver education, and basically I would make some money, all while waving bye-bye to the people I most wanted to help. I have been working seven days a week for more than three years now, pulling together a plan for caregiver education that goes beyond the superficial efforts of agencies looking to sell a service. I spent years learning what I know, and I want that experience to matter in the real world. When I set out to share information, especially for cancer families, I have only one "sniff test" -- when I put the information up, for all to see, can it actually help anyone?

Cancer is a very tricky business, especially now that cancer patients are becoming cancer survivors. There are so many issues involved in learning how to manage a disease over time. Cancer can be cruel. It can return again and again. How do families cope with that? How does a cancer patient stay motivated? What can we do to improve the quality of life for cancer patients and keep the joy handy?

I'm at that age where I know what I know. I was trained as an educator. I was trained in information science. I was trained in psychology. I did my first teaching practicum in the pediatrics department of a prestigious city hospital. I volunteered with cancer families. Over the years, I worked in a psychiatric admissions hospital with unmedicated and undermedicated psychiatric patients in crisis, in educational settings with students who have learning disabilities, and even with juvenile delinquents, some of whom were violent offenders. You won't see a lot of degrees after my name or see me in the social pages with my arm around this socialite or that mucky-muck. I've been too busy in the trenches, trying to figure this thing out, using what I have learned about the human spirit over decades. My focus is specific -- what can we do to improve the quality of life for cancer survivors and their families through education and information? How do we get this done and get it done right?

I've talked to cancer patients who think cancer caregivers are swell, but they just don't really understand what it's like to have cancer. I've talked to cancer caregivers who are at their wits' end because they're out of ideas on what to do. As an educator, I believe that there is a way to teach every concept under the sun. I know from working with students who have learning disabilities that the human mind is far more complex than we think and sometimes we have to bypass the usual routes to get the job done another way. What does this have to do with cancer? Think chemo brain and you begin to see the possibilities. Think about how the mind learns under stress and you begin to realize that we cannot afford to have fear drive the cancer bus, not if we want cancer families to thrive.

Some people are concrete in their thinking. These are typically goal-driven people. There is a challenge to be met and they meet it. In terms of managing cancer over time, these are the people who will look at milestones and markers. These are achievement people. They measure their success by what they manage to get done. How can we help them meet those goals while they survive cancer?

I also know that people who are creative thinkers are far more emotional in their approach to life. How they feel is more important than how things really are, because they want to enjoy life using all their senses. In terms of managing cancer over time, these are people who will look at the relationships they have and the satisfaction or lack of satisfaction they derive from them. These are experience people. How can we help them find the joy in life while they survive cancer?

And then there are the people who like to balance achievement and experience. They will look at the milestones and markers along side the experiences they have. They will be happy when the goals are met, but they will make an effort to stop and smell the roses. How can we help them to find satisfaction in the things they do and the relationships they have while they survive cancer?

These are three different educational modalities, when you are talking about teaching cancer families to thrive. Very often, there might be a cancer caregiver who is goal-oriented caring for a cancer survivor who is experience-oriented, or vice versa. The cancer caregiver focusing on milestones and markers can talk all he or she wants about how fabulous the numbers are, but when a cancer patient feels like crap, it really doesn't matter. No amount of numbers talk is going to change how that patient faces the cancer. It's an apples v. oranges situation. It's not enough to provide fruit. You have to provide the right kind of fruit.

For a cancer patient who is too aware of the discomfort of cancer, whether it's a physical symptom or an emotional reaction, it's important to meet those needs, regardless of how good the Big Picture looks. Fatigue, nausea, an inability to eat, neuropathy...depression, isolation, frustration...these affect the perspective of a cancer patient in very real, very debilitating ways, and that is the need to be addressed. We should be asking, "Where does it hurt?" We should be addressing the real needs of the cancer patient in real time, whether it's body, mind, or spirit. Talking about numbers when someone can't think straight because of chemo brain doesn't help. Tackling the issue of chemo brain does. Cancer caregivers can do more to help loved ones find real solutions to problems, but only if they are aware of the opportunities.

But what happens when a cancer patient is goal-driven and the caregiver is experience-driven? There's still a disconnect. Some patients can take some really tough cancer symptoms and survive them because they see the light at the end of the tunnel in those milestones and markers. They're in the zone, like marathoners, and they just rounded that last hill. Now they're pacing themselves, keeping a little something in reserve. For caregivers who are focused on the experiences involved in cancer treatment, the sight of a loved one without hair, with that too pale skin stretched tight across the bones can produce real, palpable fear, a fear that won't quit. "He's really dying!" The truth is that cancer treatment can be extremely harsh and what it does to the human body can be scary. Managing the fear associated with cancer is critical, not only for the cancer patient, but for the caregiver. And far too many patients feel isolated. It's not just that they withdraw because they are wounded by the devastation of the illness. Very often, they are pushed away, by people who just can't handle cancer and its complications. We need to change that in real ways that make a difference.

And what role does survivor's guilt play in cancer caregiving? How many cancer patients are helped by having their caregivers feel so helpless, so useless, that no one gets what's needed? Cancer caregivers have to come to an understanding that the best way, the only way to truly help their loved ones is to be strong, to be the wind beneath the wings -- birds gotta fly and so do cancer patients, but in their own way, with respect to their own capabilities. Cancer caregivers must empower their loved ones, not drag them down with guilt. Isn't it better to find as many ways as you can to help your loved one be as comfortable and active with cancer than it is to sit in the dark together, feeling miserable? Do you help someone who is terrified by sharing that terror? Your job as a cancer caregiver is to spread light and to help a cancer patient navigate the rough terrain that is cancer. "Like a bridge over troubled water, I will lay me down...." Your job is to be there, at those critical moments, to make sure cancer patients get past those obstacles that stand between existing and thriving. It's all about quality of life with cancer. And there is no real way to do that without asking the hard questions and doing the hard work. It takes commitment, compassion, and a desire to provide true comfort for the body, mind, and soul.

That's a very big part of why I am so "difficult". I actually believe that the more cancer families understand about the disease and how to manage it, how it affects the lives we lead, the better able we will be to come together and find that inner strength necessary to thrive with cancer.

As someone who was there in the early days of a lot of New Age philosophy in cancer treatment, I can tell you a few things you need to know about so-called metaphysical practices like Reiki and vibrational healing in the cancer world -- what does and doesn't work. There is far more involved in mind/body healing than just having a self-proclaimed Reiki master focus on one's chakras or a vibrational healer wave a magic wand. In the medical setting, I have repeatedly witnessed individuals declaring patients healed through Reiki "massages". I have no problem with people meditating. I have no problem with people believing in a higher power. I have no problem with people aligning their chakras or tuning into the great cosmos. But when it comes to cancer patients, there must be accountability. Doctors, nurses, therapists -- they hold licenses to practice. They are accountable for their claims and they are expected to produce results that are measurable.When a doctor practices bad medicine, his or her treatment techniques, diagnosis, medication protocols, and ethical behaviors are examined. It's one thing to talk a cancer patient into a calm state, to suggest the universe is at peace, to encourage a cancer patient to imagine being part of that wonderful healing energy. But far too often, metaphysical healers proclaim cancer patients physically transformed by their magical energies that are invisible to the naked eye, to the microscope. Imagine what it feels like for a cancer patient to be told that he or she has had the aura healed, only to find the cancer is more aggressive than ever. If a metaphysical healing fails, who's to blame -- the patient or the healer? Who vouches for the metaphysical healers working their magic in medical settings? And how do you prove responsibility, good or bad?

I once sat in a chemo room on more than one occasion, listening to a man who was telling other patients he was a Reiki master who could heal them, even as his own cancer had advanced. He wasn't suggesting that it was the spirit that would be healed. No. He was telling patients he could heal their physical bodies and rid them of cancer. Sadly, he was not the exception to the rule. There were healthy Reiki masters walking about in the same cancer center, making similar claims. The hospital executive I contacted insisted that the program was carefully monitored and the Reiki masters were professing no supernatural powers. And yet, in conversation after conversation, the reality was quite different.

Which raises a very ethical issue in cancer care --  if I claim, as I have witnessed many to do, that I have the proper energy to cleanse your aura, but your cancer returns, doesn't that make you a double loser? Obviously you must have failed to accept my healing energy because you're a person stuck in darkness. You allowed that cancer to grow back, despite my best efforts to heal you. How else is that recurrence explained?

When we employ metaphysical practices within medical centers inappropriately, we are sticking cancer families into a hole from which they cannot escape. It's one thing to use it as a stress reliever, a symbolic gesture of mental and spiritual healing. It's another to use it as a placebo for real medicine. We should be treating what really hurts by peeling away the layers of pain, panic, and perception.

So many cancer patients and their caregivers already wrestle with guilt over the disease. "What did I do to cause my cancer?" That's about placing blame. It had to have happened for a reason, so what was the role of the patient in creating the climate that allowed cancer in? "Why did my loved one get it and I didn't?" That's about seeking some redress for the situation. The unfairness that is cancer isn't really shared by the caregiver, and no amount of self-deprivation is going to balance the equation. It's really all about finding healthy ways to empower the cancer patient by being strong as a cancer caregiver.

Real mind/body healing is far more complex than throwing cancer treatment and mind relaxation techniques together. We must deal with that darkness between -- the fear, the worry, the rage. That's all about communication. Cancer patients need to be able to talk about their feelings in a safe, secure environment. Cancer caregivers need to confront their own apprehension, guilt, disappointment, and sorrow in a safe, secure environment. When that relationship is tainted by preexisting difficulties, when things get so twisted that there is no way to de-tangle the mess, the loss is even greater. When the relationship between cancer patient and cancer caregiver is strengthened, the honesty can flow in positive, healthier ways. That's real healing. When you hear a cancer patient say, "You get me...", that's when you know you've made a viable connection, a true bridge over troubled water.

So many cancer patients find their lives are changed by the disease in more than just physical ways. I've had cancer survivors tell me their families have written them out of the picture because it's assumed they will die from the disease, sooner rather than later. How sad is that?

How many relationships have been imploded by a cancer diagnosis? "Do I stay or do I go?" It's easy to say it's wrong to walk away, but should anyone ever stay in a bad relationship because of guilt? Real mind/body work is all about fixing what's actually broken, and that includes the perceptions and misperceptions about cancer and life before the disease crept in. Cancer is traumatic, and some cancers are more so than others. The better we understand the effects of the disease on the psyche, the better able we will be to meet the real needs of cancer families, especially as cancer patients are surviving longer.

My belief that we can and should do cancer caregiving better, my belief that it can be taught in more effective ways, my belief that we can better help cancer patients by understanding what they are going through in mind and body -- that's what makes me "difficult". When I have an interviewer superficially charging through her schedule, looking for someone like me to "fill" an hour on her show, she's not interested in what I have to say. I'm not a "name" in the cancer world. I'm no cancer VIP. She's looking for someone who will talk about cancer for that time period. She's more interested in the subject of cancer than in the actual conversation. In that sense, cancer becomes the tag, the label, the word bantered about.

I'm here to make a difference, a real difference. I know there are ways to help cancer families manage their lives in more meaningful ways, by coming together, by working together. I'm not prepared to go and sit in that truck, hoping someday things will get better. I'm not willing to settle for ordinary fixes, with people talking, talking, talking about cancer. I want to be there to make it happen. I want to teach real skills to real people, and I want to know these efforts make a positive difference for those who are willing to use them. That means opening up the world of cancer caregiving to share the knowledge and the learning.

For every cancer patient who has felt like a leper for having the bad fortune to contract the disease, believe that there are people like me out there who care. Every time your family falls short in supporting you, know that people like me are trying to bridge the gap. And for every cancer caregiver who is at a loss on what to do next and where to go, don't stop trying to make life better for your loved one. Listen with your heart and your head. Hear the words. Read between the lines. Continue to reach out, even as you learn.

To all of you cancer families, this is my best advice. Learn from other cancer survivors. You will see failures and successes in varying degrees. Pay attention to what made them feel better. Pay attention to what made them feel worse. Pay attention to each other and know that cancer can be a lonely journey when it is not shared, so share it. Be there because it matters.

Thursday, April 25, 2013

Can't Make a Real Difference for Cancer Families? Go Wait in the Truck! (Part One)

I got my fanny kicked today, and not by just anyone. No, it was by an expert interviewer. And I wasn't even being interviewed at the time. I was doing the prep for a guest spot on a talk show. The way things look at the moment, it doesn't look like I will be sitting in that hot seat.

I am a caregiver educator. My goal is to make a difference in the lives of people who need care and family members who provide it. I'm looking to fix the disconnects, so that everyone wins. The topic of the expected interview was cancer caregiving. It's a subject that means a lot to me for many reasons. I'm always focused on making sure that cancer survivors get what they need as much as cancer caregivers. So much of what goes on after a loved one gets a cancer diagnosis is driven by the emotional impact on life. How can we make it better between cancer patient and caregiver? What can we do to bridge the gap, so cancer patients feel less lonely? Is there anything more heartbreaking than the losses, not only of the physical body to the disease, but the overwhelming sense of emotional isolation? How many cancer patients walk through life wounded? And how many caregivers feel helpless and frustrated, unable to find the right words to say, the right things to do?

I can see how the interviewer got off-track in our exchanged emails. She focused on one thing and ran with it, in the opposite direction from where I was headed. When I shared my talking points, I had a list of subjects that I am well-versed in. But she made up her mind as to what she wanted and it wasn't what I had in mind. This wasn't going to be a win-win situation. You see, this isn't a cooperative relationship. It's her job to set the perimeters and not my job to comment.

I gave her the benefit of the doubt, suggesting there was a miscommunication between us. That was an opportunity for her to scale it back a bit, to recognize that she wasn't making her point effectively. After all, I've never been invited to be a guest on a show, only to be told later that it might be best to invite another guest to "help" with it. To help with what? Why? To me, that's like being uninvited to a party.

The interviewer stated that she has never faced this problem with other guests. Apparently there are almost three hundred contented individuals in the last year alone and just one little, old, disgruntled me. I seem to be the only one who's ever questioned her approach.

And then, to really drive home the point, she wanted me to know that she was just trying to put together a good show. I guess she's telling me that I didn't appreciate her hard work. Once more, my bad. Shame on me for taking umbrage with her efforts. I guess that makes me very difficult to work with and definitely unreasonable. How else can you explain it?

The irony? She still doesn't see the problem, but I do. This is about effective communications. This is about really listening. This is about perceptions. You see, I'm at the point in my life where I expect to engage in a dialogue that goes back and forth. If I'm going to take an hour out of my life to have a conversation, I don't want to talk at someone. I want to talk with someone. I want to be on the same page. I don't want to feel like I'm on the short end of the stick, any more than I want to put someone in that position. We're talking about cancer. I've seen the devastation -- the broken relationships, the injured spirits.

From where she sits, I'm sure most people are thrilled to be guests on her show. That may be why they are okay with her style of conversation. I can even see that she might feel I am totally out in left field because I had the audacity to question her judgment. But from where I'm standing, I see an interviewer who is so focused on her own show, the guests are just the backdrop for her version of cancer life. It's all packaged. This isn't about educating people or sharing. This is a commercial enterprise. And that's something I find a lot in the cancer world. Everyone's out to make a buck off cancer families. This one has books. That one is selling a program. Bottom line? It's really all about sales and marketing.

If you've ever really sat down with cancer survivors who have felt like strangers in a strange land, or with cancer caregivers who were baffled about how to make things better for the people they love, it's nearly impossible to be casual about the subject. Every time I have a genuine conversation with a cancer survivor or a cancer caregiver, I am humbled. I am always hungry to learn more. Cancer isn't a business enterprise, a money-maker, a means to a financial end. Most of the media people I know whose lives have been touched by cancer find it very hard to just play the game. They might do it when it comes to sports or politics or daily living, but the Big C is still the Big C. It matters that we get it right.

Every time I reach out to cancer families, I am mindful that there is so much more we can do, should do, to improve the quality of life for everyone. I want to get it right. I don't want to talk for the sake of talking about cancer. I want to talk because Harry in Daytona Beach is feeling blue and wishes he knew what he could do to make a positive change. I want to talk because there is something I can say to make Mary in Philly feel a little less alone. I don't ever want to waste the time of cancer families. But then, I know how important time is when it comes to this disease.

Am I overly sensitive? Probably. Could I have handled the miscommunication better? Probably. But I still think I hit the nail on the head on this one. When an interviewer goes plowing through guests like Grant took Richmond, it's less about quality and more about quantity. When the script is written without any interest in having a real dialogue about cancer's impact on families, count me out. I may be an idiot for handling things this way. Time will surely tell. But this is my passion. Life should be better for cancer families and I am committed to making that happen. If I can't do that, I should shut up and go wait in the truck.

Tuesday, April 23, 2013

Debbie Woodbury Speaks to Breast Cancer Caregivers


About Debbie Woodbury:

Maya Angelou said, “There is no greater agony than bearing an untold story inside you.” The healing power of sharing her story as a cancer survivor compelled Debbie Woodbury to found WhereWeGoNow, an interactive community for cancer survivors creating inspired healing, wellness and live out loud joy. Debbie is also a blogger at The Huffington Post, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathways Women’s Cancer Teaching Project, a wife and mother, and a former very stressed out lawyer.

You can also find Debbie on Twitter and Facebook.


A note from Sara Barton, The Practical Caregiver:

One of the things I love most about what I do and what reinvigorates me time and again, is the chance to speak honestly and openly with people who have wisdom to share. I asked Debbie Woodbury, an experienced patient educator, if she would be interested in answering questions for my cancer blog. I wanted to tap into that fountain of expertise and help cancer caregivers understand the real issues involved with breast cancer. It’s too easy to think that caregiving is about changing bandages and driving a loved one to appointments. Healing is as much about the heart and mind as it is about the physical body. I think she speaks to that in a voice that is authentic and wise.

Sara:

Debbie, you’ve had the chance to interact with a number of women who have been diagnosed, and you’ve seen what they go through and how it affects their lives. What should family caregivers understand about the common difficulties faced by breast cancer survivors during treatment and even after treatment is over?


Debbie:

When you get a cancer diagnosis it usually comes as a shock. Many of us have never been sick before and are suddenly thrown into an unfathomable world of medical terminology and procedures. You are under constant threat, have no way to predict what will happen next, and are overwhelmed by all it takes just to survive each day. In a flash, you confront your mortality. It’s like being shipped off to war.

Up to this point, the patient and caregiver are usually united in their terror. I can’t imagine how hard it was for my husband to wait outside during my mastectomy and TRAM flap reconstructive surgery. Patients and caregivers often part ways, however, once they’re out of the fox hole of treatment. That’s usually the point where caregivers want to move on because they think "the worst is over." This is a real source of disconnect between survivors and caregivers and survivors often feel guilty (and angry) about it.

Sara:

I think you’re right, that it’s a source of disconnect between survivors and caregivers. If anything, coming out of the fox hole is the time when the deep emotional impact of the whole experience is most likely to hit our loved ones, because the immediate physical crisis is receding. It’s really time to assess the overall situation and what it all means for the “new normal”. We tend to slap that "happy face" on everything and pretend life is hunky-dory, when it's really not. I think cancer survivors can sometimes feel pressure to "soldier on", when what they most need is to feel what they feel and process it. How else can you live with it? Families need to not stand in the way of all that.

I think sometimes, as caregivers, we're so afraid of what our loved ones feel, we don’t want to really know, because we don’t have a Band-Aid big enough to cover that psychic wound. We have to get past our own sense of helplessness in order to do right by our loved ones. And we can’t naively hope that by focusing on the positive, we can somehow help our loved ones avoid the potential recurrence.

Breast cancer survivors seem to need more support than any one person can provide -- why is it so important for survivors to share their wisdom, insight, and experience with each other?


Debbie:

I think the shock of a diagnosis, the burden of treatment, and the post-treatment disconnect between survivors and caregivers are common experiences of most, if not all, cancers. A breast cancer diagnosis heaps on an additional loss – the amputation of a very visible, “feminine” body part. Even with reconstruction, your body is permanently altered. This loss rocks many women to their core and it’s impossible not to be reminded of it every time you take off your clothes. It’s a lonely place to be, especially when family and friends want us to be over it.

We love our caregivers and watching them struggle with our disease is tremendously painful. That pain (and the guilt it can cause) can shut us down, lest we cause more pain. That’s why it’s virtually impossible to heal body image, sexuality, fear, and all the other emotional issues which arise without a support network of other survivors who “get it.” Sharing our stories validates our feelings and breaks through the loneliness of life beyond treatment. I call it the power of “Me too.”

Sara:

“The loneliness of life beyond treatment....” What a powerful phrase. But you’ve hit on an important point. I’m sure there are caregivers out there who feel that it’s just a matter of throwing more love at cancer survivors, as if that will make the pain fade away. The physical and emotional trauma of fighting the disease changes a person. I once heard a cancer survivor say she felt like she had been betrayed by her body when she was diagnosed with breast cancer. It seems like a matter of learning how to trust all over again, to believe that life can be okay, even with breast cancer. That’s not really something your family can do for you. It really does have to come from other survivors, helping you learn how to reemerge from your cancer cocoon.

How much do caregivers need to know about the specific details of what breast cancer survivors go through in order to better support the women they love and what are some positive ways to acquire that information?


Debbie:

The more caregivers know and understand the easier they make it for their loved ones. Of course, no one expects a caregiver to “get it” completely. That’s just not possible (just like it’s not possible for survivors to completely understand the caregiver experience.)

The best advice I can give a caregiver is to not assume cancer is “over” and to listen to and engage your survivor. I remember an especially poignant comment on WhereWeGoNow written by a husband of a breast cancer survivor. His wife asked him to read my post, Running on Empty – Coping with Cancer Stress. The post was important to her because reading it made her feel less alone. It also sparked a conversation between them and made him realize that “As a spouse, it is easy to focus on the physical aspects of dealing with this disease. After talking more with her and reading this post it is readily apparent that there is an on-going mental battle that will continue to wage with both good and bad days.”

Sara:

That really illustrates why it’s so important that caregivers learn as much as we can to help our loved ones. When we see life through their eyes, we can recognize opportunities to step up to the plate and give what our loved ones really need in terms of support. In what ways can caregivers prepare themselves to recognize important sign posts and milestones?

Debbie:

Just like the survivor, a caregiver should create his or her own support system. Find medical professionals, including therapists, who readily share information and offer support. Join caregiver support groups. Read blog posts written by cancer survivors, who are amazingly open and honest about their experiences. We heal physically and emotionally from a cancer diagnosis and treatment. The more information you collect, the better able you are to recognize the sign posts and milestones of that healing and give support. What is most important is for everyone, survivor and caregiver alike, to appreciate that what the survivor is going through emotionally is a normal part of healing.

Sara:

So true. And healing is very much a multi-layered process that takes place over time. It can feel like one step forward, two steps back, especially as survivors process their emotional experiences with the disease. I think sometimes cancer caregivers misunderstand what their loved ones are going through when they express anger or sadness at their losses. What are some positive things that caregivers can do to help breast cancer survivors feel less lonely and less isolated?


Debbie:

A few months after my mastectomy and reconstructive surgery my husband and I were invited to dinner with friends. I told him I didn’t want to go because I was tired of telling people I was fine when I wasn’t. Being a pretty straight-forward guy, he suggested I tell them the truth. The idea actually shocked me, because I was desperately trying to hold it all in, but it also made sense.

We went out to dinner, the inevitable question was asked, and I answered honestly. The reaction I got - empathy, concern and support - shocked me. Not because I didn’t expect it from good friends I knew to be wonderful people, but because I had been isolated for so long and didn’t feel safe sharing my feelings.

That discussion was a turning point for me. More than anything, I needed to know it was okay to be where I was and that I deserved support. As wives and mothers we are usually the emotional caregivers. A lot of us just aren’t comfortable asking for it for ourselves. A caregiver who makes us feel safe to express our feelings opens the door to communication and helps end our isolation.

The other thing caregivers can do is encourage their loved ones to create strong support networks. This is vitally important for two reasons. First, no survivor can effectively heal without the validation of others who understand and emphasize. Second, no caregiver should take on the task of being the sole source of support for a survivor. It’s an impossible job and bound to burden the relationship.

The bottom line is this: We are women and most women like to talk with other women about our lives. Now that cancer is a part of our lives, we need the sisterhood even more. As we share, cry, and even laugh, our load is lightened and that is the precious gift of support we give to each other.

Sara:

Your words have a powerful resonance, Debbie. I’m sure there are breast cancer survivors out there who needed to hear your message today. And I’m just as sure there are cancer caregivers who will take these words and find new ways, meaningful ways, to support the women they love. A good caregiver never stops trying to find what will bring true comfort to a loved one. As you said, we really need to let others into the caregiver circle. We should never feel left out of the process when our loved ones need to get support from other breast cancer survivors. It’s a matter of opening our eyes and our hearts to what is needed, regardless of who brings it to the table. That sisterhood of survivors provides some powerful medicine to women going through the healing process, and the more we encourage and support our loved ones honestly and effectively, the better life will be for everyone. Thank you so much for sharing this with us.






Wednesday, April 17, 2013

"This Is Your Brain, This Is Your Brain on Chemo" -- Video

I wanted to figure out a way to put chemo brain into context for people going through cancer treatment. Some folks think it's an imaginary thing, more psychological that physiological. The truth is that a number of chemo drugs (but not all) can affect the nervous system, and as such, they can affect the thought process. This YouTube video is my attempt to share some insight on how chemo brain can change a cancer patient's life.

Wednesday, April 10, 2013

Getting Past Chemo Brain

I'm a big believer that family caregivers can make a difference for cancer patients when we focus on overcoming the dreaded "chemo brain" by helping our loved ones in gentle, respectful ways.

This article, by Ellen A. Walker in the April 1, 2013 issue of The Scientist, is the basis of my blog post. If you have a loved one who struggles to remember things, check it out:

"After Chemo"

I trained as a teacher, so I understand that not all students process information in the same way. I often saw students struggle to learn what came easily to other classmates and peers. It's part of the reason why I always made an effort to gear my approach to the specific student. By understanding how a student perceived information, I was better able to figure out ways to connect that student to the information I wanted to impart.

Why does that matter? My mother had chemo brain after being treated for lung cancer. Oddly enough, she also had ADD. It runs in my family, and although I don't have it, I made an effort to understand what it is and how to help someone overcome it. Patterning the brain to overcome deficits can help build connectors and connections, can bypass what isn't working. The human brain is an amazing thing, especially when you look for ways to overcome the obstacles. In the years of being a family caregiver, I had devised strategies to help my mother cope with all the simple things that she couldn't remember due to the ADD. But with chemo brain? Wow. She was devastated. Why?

She had an amazing mind when it came to language skills. Verbal and expressive, she might not have been able to focus on concrete issues, but she had been a writer for decades, a voracious reader, and a talented Scrabble player, who didn't like shortcuts or cheating. With chemotherapy, all that seemed to fly out the window.

Even as those cognitive issues began to rear their ugly heads, I was looking for ways to reduce the emotional blows she endured because of the chemotherapy. We moved from competitive Scrabble to cooperative Scrabble. I refused to compete with her, insisting that it was more important for her to get the words than it was to get the points. I would give her little prompts, trying hard to encourage her to push herself a little more to come up with possible solutions. I even nudged her to think of more than one solution. I wanted her to have options that would allow her to realize, to recognize, that there were points according to the value of the letter tiles.

In other words, I wanted her to have the chance to relearn how to play the game, and in doing so, I wanted to return to her some of the verbal skills she lost after chemotherapy. Did I succeed?

I'd like to tell you that my mother went back to being her old self eventually, but that's not quite true. She never did seem to fully recover her ability to read for any length of time. The joy of reading slowly slipped away from her. Part of that could have been due to the progression of her cancer.

But I can tell you that those Scrabble sessions actually made a difference. What is my proof? Time and time again we played the game, on a regular basis, a regular schedule. Slowly, but surely, my mother began to recognize the value of the letters and to recall the potential words. It took hours of sitting and staring at the board. I believe that's part of the recovery process. The human brain needs to see, to rebuild the connections in the brain, or even to bypass the old connectors for new ones.

Would that same type of brain patterning have helped her with her reading skills? I can only wonder. But I can tell you that she was pleased as punch the first time she found herself a 50-pointer on that Scrabble board, without any prompting from me. It was her success, her win, her climb up the mountain, back to what she was before chemo brain challenged her life.

If you're a family caregiver for a cancer patient challenged by chemo brain, consider finding gentle, respectful ways to encourage your loved one to "relearn" what once came easy. Focus on the fact that chemo brain is a very real side effect from many types of chemotherapy drugs. Expect that there will be times you might have to prompt your loved one to remember. Don't nag. Don't take over your loved one's mental life. Think of yourself as a train conductor. You want your loved one to get from point A to point B. Call out the stations as they pass by. Remind your loved one what he or she is seeing and where he or she is seeing it. Give a heads up at each juncture. When you do this, you are assisting your loved one to reconnect, to stay in the game of life, to regain what was lost.

Always remind yourself that a cancer survivor with chemo brain is not a child. Never speak down to your loved one. Never say things like, "Listen this time!" or "You have a mind like a sieve! Why can't you remember this stuff?" Think of chemo brain this way. Your loved one's brain is like a castle, filled with rooms. The chemotherapy has gone through that wonderful palace and not only shut off the lights, but locked the doors. Recovering from chemo brain requires that each door is not only unlocked, but the light switches have to be turned back on. That takes time and effort. Some parts of the brain may be less affected by the chemo therapy than others. Take a mental inventory and build on it. What is your loved one still good at? What can he or she still do without as much prompting? When you identify those skills, work with them. They will help your loved one recover more quickly, because everyone needs to experience success on a regular basis. It's what encourages us to take challenges that we believe we can tackle effectively. We are drawn to light and repelled by darkness. When you identify things your loved one can still do well, find the associated activities that offer some struggles, and work on those skills. Those are the connectors in the brain that will eventually lead to the darkest regions. If you focus on the darkness, if you only see what the failures are, you will miss the opportunity to light the lights. Strength comes from success, from what is functioning. Weakness comes from darkness, what is failing. Point yourself in the direction of helping your loved one use his or her strengths to adapt to weaknesses.

Above all, believe in your loved one. Don't assume that every change in mental acuity is permanent. Don't be afraid to put up notes, to put things in writing, to place reminders. There will be times that your loved one may get frustrated or feel "stupid". Make a point of reminding him or her that chemo brain is real and not the result of laziness or disinterest.

One thing I did learn from watching my mother struggle with the cancer and the cancer treatment? It's a lot of extra work above and beyond living life. It can be exhausting to juggle the side effects and the emotions of cancer. Cancer caregivers need to understand the wide range of issues. When you educate yourself, you are better able to reach out to your loved one. You don't want to make your loved one dependent on you because of chemo brain. You want to empower him or her. Offering effective prompts and encouraging your loved one to get back to living can actually help overcome many of the temporary effects of the powerful drugs. When you focus on helping your loved one regain those mental skills, that's the best kind of caregiving.

A note -- Ellen Walker's article in The Scientist was brought to my attention by Robyn Stoller, who tweets as @cancerHAWK, and she got it from Bruce Shriver, who tweets as @Bruce_S. My thanks to both of them.

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

Friday, April 5, 2013

Roger Ebert Never Steered Me Wrong

I'm not going to talk about Roger Ebert's long battle with cancer. I know it was brutal.

I'm not even going to talk about how he kept on working, right up to the end of his life. I know he was a prolific writer, offering his opinions on everything from his beloved films to his favorite sports teams. He even managed to master the social media that often fails me, all while fighting a tough foe.

All I want to say is that he never steered me wrong when it came to the movies. I can't ever remember seeing a film that he loved and feeling like I needed to walk out. Other reviewers? Holy cow! But Roger was what I call a real movie lover's reviewer. He wasn't there to tell you how fabulous he was or what a genius he was at reviewing movies. His passion was the silver screen. Isn't that what allowed him to stay for the dogs and be able to tell you why they stunk?

A good film reviewer understands why he or she really enjoyed or loathed a film. That same reviewer can pinpoint where the story falls apart or when it starts to tick all the boxes. Roger Ebert had the knack of finding the true heart of any movie and determining, for me, whether it was worth my ten bucks. Should I see it? Should I wait till it comes out on video/DVD? Major film? Minor film?

What I loved best were some of the quirky films on his lists. Foreign films. Wacky films. Wild films. He would say what he would and I could tell from his description whether I would actually enjoy it. Let's face it. Anyone who watched that many movies in a single year had a much higher tolerance for a broad range of storylines than the average moviegoer. He just loved them -- old classics, new classics, and everything in between.

I could make this a cancer tribute to a legend who shared his insights about what was appearing on the big screen, but I'll be darned if I'm going to give a disease that kind of power over someone who refused to concede to it. I'm glad we had the years we had with Roger Ebert. I'm glad he shared his passion for film. Because of him, I went to the movies and laughed till my sides hurt, cried till my eyes were red, and was stirred by feelings I never knew I had in me. Thanks, Mr. Ebert. You will be missed.

Thursday, April 4, 2013

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.