If you didn't read the New York Times article today on Angelina Jolie's decision to have a preemptive double mastectomy because she has a history of cancer in her family and high risk of developing the disease, please do:
No Easy Choices on Breast Reconstruction
Written by Roni Caryn Rabin, it's chockful of good information, thoughtful consideration of the issues involved in making the decision, and lots of wisdom offered by Dr. Deanna Attai.
I've never met Dr. Attai, but I was lucky enough to meet some of her friends a few months ago at the Cancer Treatment Centers of America Bloggers' Summit out in Arizona. Alicia Staley and Jody Schoger are two-thirds of the brains behind the Monday night BCSM online chat. Dr. Attai is the other third.
For women facing breast cancer, BCSM (Breast Cancer Social Media) is a support group like no other. Imagine having other women who have been there and done that show you how to wear the tee shirt. You can follow the Twitter conversation, moderated by Alicia, Jody, and Dr. Deanna, at #BCSM Chat Monday nights at 9 PM.
You can also click on the group's website link, www.bcsmcommunity.org.
Why am I telling you this? I don't want you to just stop at the end of the New York Times article. If you're facing this important decision, I want you to make the best, the smartest, the most informed decision you can about your future. Most of all, I want you to have resources and support, and that's what the BCSM community offers. Don't go it alone. Don't just assume you have to do this or you have to do that. Every woman is different. Every cancer is different. It's never one-size-fits-all.
One of the best pieces of advice Jody gave my readers in her interview with me was this:
"The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don't realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It's a lot to take in at one time. But you don't want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There's only a small subset of breast cancers immediate action is necessary."
"Jody Schoger Wants to Make a Difference...." Interview
Dr. Attai has guided so many women through the maze that is breast cancer. You can find her on YouTube, offering helpful information on video:
http://www.youtube.com/user/dattaimd?feature=watch
You can also find her website: http://www.drattai.com/
Facebook? She's there, too, as Dr.DeannaAttai. At Twitter, she tweets as @DrAttai.
If you're dealing with breast cancer and its related issues, be good to yourself. Join with others who have sailed those waters. Share your experiences, the lessons you learned, the wisdom you gained. For every time you felt that dark shadow cross your heart and felt that panic, know you are not alone. There are others who know that pain. By coming together with social media, Dr. Deanna, Jody, and Alicia created a wonderful resource center to fill a deep void in cancer treatment. Breast cancer is such an intimate and life-transforming disease, and it takes a lot to get through it. Improve your chances by gathering up what you need from women who understand how to pack that suitcase.
Tuesday, May 21, 2013
Friday, May 3, 2013
Having Cancer Is Like Having a Stalker Stalk You
Anyone who has ever had a stalker knows the sheer fear, that tension in the pit of your stomach that pulls your gut into one tight knot that never seems to let go. While you're looking behind for that telltale shadow, you get broad-sided by that sudden furtive movement as your stalker suddenly appears right in your face.
If you're a cancer survivor or a cancer caregiver, take a few pages from the "Life with a Stalker Handbook". Understanding and utilizing the lessons learned in fighting a stalker long-term can help cancer survivors function more fully in their lives.
There are a lot of similarities between cancer and stalkers. Cancer, like a stalker, can deceive, can pretend to be cooperative, when in fact it is setting up shop in another organ, sometimes even hiding in plain sight and masquerading as a benign being. It can throw its hands up in the air and appear to be walking away, all while it plots to find another tiny opening in the victim's life that can be exploited. There can be distractions, lulls, and even periods of inactivity, when you think it's finally done. You tell yourself you can get back to your life, get settled into the normal rhythms and routines, only to find your life erupting into confidence-shattering chaos and confusion once again.
Stalkers are, like cancer, very dangerous because of their unpredictability, mindset, and potential volatility. In order to fight a stalker, you have to understand the menacing behavior of the individual stalker. You can't assume that every stalker is using the same playbook. What drives this particular individual to do what he does? What does he hope to get out of it? Why is he attacking in this particular way? What does his victim have that he needs? Stalkers have certain patterns in common, but other activities and motivators are unique to the individuals.
The same is true of cancer. We treat it like it's one disease, when in fact it's hundreds of different diseases, with different triggers, behaviors, and malignancy rates. One size does not fit all.
If you've ever been the victim of a stalker, you know that panic. "What did I do to make this happen?" You review the scenes over and over again in your head, trying to figure out what it was you did to attract the attention of your stalker. Were you just too handy? Was it something you said or did, or even didn't do? Why you? Why not your neighbor down the hall? Why not someone else?
Isolated incidents involving violence can be overcome with directed and mindful cognitive exercises. You can look at a single traumatic event and put a face to it, a meaning to it that will eventually allow you to come to terms with it and make peace, provided you have the right support and psychological tools.
But how do you fight a stalker over time? So often, the stalker lurks in the shadows, hiding behind bigger obstacles while he's stalking, but the rest of the time, he usually blends into the crowd. A stalker doesn't want to get caught, because if caught, he can be apprehended, contained, neutralized, even paralyzed in his tracks -- so he feigns being something he's not. The philanthropist loves everyone. The average Joe who's minding his own business. The good guy who just happened to be passing by. The upstanding citizen who's no threat to anyone. Cancer's a lot like that. The symptoms can mimic other diseases, other issues, and that can be distracting. Doctors very often take the symptoms presented and assign them a diagnosis that has nothing to do with cancer. If they don't suspect it's cancer, they don't test for cancer.
Some stalkers are better than others at getting away with their crimes. They learn to wear rubber-soled shoes as they creep about. They get to know their victims inside and out, always in search of vulnerabilities. Victims often flee to escape their tormentors, only to find themselves in greater danger. What's a cancer survivor to do when the potential for "someday" looms on the horizon? Run away? Disappear? Bury one's head in the sand and hope it won't hurt too much when the rest of the body is left vulnerable to attack?
Stalking is, in reality, a mind game first and foremost. It's psychological warfare at its best. It's predator after prey. Sometimes victims can give their stalkers too much credit for intelligence. We imagine their power is greater than our ability to overcome, so we don't look for reasoned ways to fight back. We don't use our greatest tool, the human mind. We flee, and in doing so, miss so many opportunities to enjoy life by staying in the game. When cancer survivors wrap their heads around the notion that cancer is as much a mental battle as a physical one, they begin to understand their foe. In any battle, knowing your enemy is the most important means of directing his defeat.
Many victims of stalkers learn to live off the grid, to fly under the radar, in the hopes that they can evade their pursuers. Imagine spending all that time and energy trying to not do the things that will alert the stalker to your whereabouts or arouse his interest again. You might constantly ask yourself, "Is he going to find me again? Is he going to come after me once more?" The constant stress and distress of living with the potential threat cuts the joy out of life. You're always teetering on the edge of despair. "I have now, but what comes next?" It's the unknowing-ness of the future that hurts the most. It's the mistrust of the half-consumed moment. Fear can paralyze us. "In the blink of an eye, life can change, and I don't want it to get worse."
But that's not the only problem. Denial can often rear its ugly head in stalking situations. What happens when the stalker is in plain sight and everyone knows you're his victim? What happens when everyone around you can see the stalker, but they don't believe he poses a threat any more? People throw deterrents at stalkers all the time, in the hopes of dissuading them from acting out on their need to prey, as if that's enough. That's a lot like tossing cancer therapies at patients willy-nilly, in the hopes that something, anything, will work. Once treatment is completed, cancer survivors are just supposed to move on with their lives. They're not supposed to wonder if the radiation will create new complications, or think about the potential for a different kind of cancer because the body was weakened by the first. "Don't worry about it till it happens!" Is that really the best advice for someone who lives under the threat of another bout with cancer or complications? If I know I might have a problem at some point in the future, won't I be better able to deal with it if I am armed with the knowledge that will empower me to do battle?
The truth is the more you know about the specific threat, the better, because that's when you can develop a strategy. Even if you never have the chance to completely contain the stalker or his dangerous behavior, you can manage the danger he poses by being able to act in ways that make a difference. That's how you rebuild a realistic trust in yourself, those who support you, and even in the potential for a good life. Fear that once prevented you from taking chances gives way to confidence borne of wisdom. "Yes, cancer may come back, but if it does, I'm ready for it. I'm prepared. I have my people and I'm going to give it everything I have."
The most effective way to handle a stalker is to know him, inside and out. What makes him tick? Why is he doing this? Too generalized an understanding puts the victim at greater risk of not only triggering another incident, but also in becoming more vulnerable. There is a world of difference between a stalker who has a fantasy life and a stalker who has a secret life. Someone who is mentally unbalanced might spiral out of control without rhyme or reason. Someone who is trying to protect a skeleton in a closet will be very driven and determined in attacking his victim. His motivation for acting is self-preservation and he is willing to kill to make that happen. But stalkers are, by virtue of their covert lives, secretive. They depend on people not knowing what they are up to in order to hide.
Cancer treatments that focus on the specifics of an individual's cells, genes, overall health, and any of the factors that affect that particular type of cancer are the best type of threat management for cancer survivors. Every day, new developments in fighting the disease show that certain types of cells work in certain, somewhat predictable ways. As doctors learn more, they also learn ways to cut the cancer off from what feeds it. Just as you want to move a stalker away from his victim, to neutralize his ability to cause harm, doctors take cancer treatments to new levels every day -- by starving tumors here or by empowering the immune system there.
But where does that leave cancer patients? Still battered by the stalking, still fearful of the future?Victims of stalkers often have difficulty living normal lives because they spend so much time and energy trying to survive, just like cancer patients -- it's often a matter of knowing when you can safely poke your head out of your hidey-hole. But it's more than that. Those who have, over time, had their lives disrupted again and again, had to pick up and move once more when their stalkers located them, never really fully trust in anyone or anything. You always hold back a little part of yourself because you expect that disappointment to arrive on your doorstep once again, almost always when you least expect it. Stalkers love to terrify their victims, so they look for the chance to pop up out of the blue. Living with that stress over decades is tough. You never ever completely let your guard down. You never ever really get used to believing that life can be good. "It was good once, and it's okay now," becomes the new normal.
But in accepting how things have changed, in taking it one step at a time, and most of all, in having the right kinds of resources to identify real-time threats, victims become empowered and stalkers will, over time, lose their power to terrify. Even when you know in the back of your mind that there could be another incident, another blow, you're already thinking of what you can do to deal with it, to get past it. That's the strategy that a lot of victims use once they really come to terms with their predators. "I refuse to give you power over my life, my emotions, my heart. I will not live in fear anymore. I am willing to do what it takes to keep myself safe."
For cancer patients, the knowledge that cancer can, and might, recur is often overwhelming. It's hard to live with the maybes, the uncertainty, the possibilities. How do you manage it? How do you plan for it? Should you even consider it?
Take a lesson from victims of stalkers. Don't isolate yourself. Running away is a dangerous strategy, because your stalker will hunt you down. If you have fled, you have probably cut yourself off from your best support network, those people who will look after you and fight for you. The bigger your team, the better your chances of reducing your risk of injury or worse.
Instead, surround yourself with people who are knowledgeable about your situation. Don't be afraid to immerse yourself in the learning. Talk to other cancer survivors and learn what they know about the disease. Think of it as a self-defense strategy. If you're going to kick cancer's ass, do it right. Don't raise a little finger when your assailant comes at you with a big stick, grab a crow bar and cripple him. Let him see you are not intimidated or weak in his presence. Toss the creep to the curb.
So many times, victims of isolated incidents think it's just a one-time thing, so they never bother to learn how to look out for themselves. Lightning doesn't strike twice, right? But when you have a stalker, that's an ongoing threat, one that isn't going to stop until the stalker is permanently neutralized in his tracks. Being vigilant doesn't mean you're always terrified. The more you learn about cancer, especially your type of cancer, the more you can understand its weaknesses, its needs, and even its goals. Some kinds of tumors consume hormones to live and starving them of the hormones can prevent new occurrences. But there are side effects, aren't there? The tumor needs that same estrogen that you need to function well, and in preventing the cancer from receiving it, you suffer, too. How do you balance that?
Every day, new ways to fight cancer, to hold it back, to knock it down, are becoming available. What we knew last year is less than we know now. What we know now is less than we will know next year. By keeping up with information that can make a difference, by learning to recognize new symptoms as they sneak in, cancer survivors have a better chance of managing their disease in meaningful ways.
Just as you need to be vigilant in recognizing new signs that your stalker has resumed his bad behavior, whether you notice new scratches on your door lock or you find things have been moved in your car, those are signs you don't ignore if you've been a victim. Every long-time Stage 4 cancer patient I ever met had one thing in common. They all were proactive in dealing with new symptoms and they were willing to fight hard to survive. Those "I can do this" muscles were developed over the years of battling their unseen, seemingly unknowable foe. The harder they fought, the more they learned about cancer's cunning, and once they learned, they got busy.
Many times, cancer survivors want to turn their backs on the disease once it's under control. And so often, their families and friends want them to move on. That "let's just forget about it and act like it never happened" mindset is what often puts cancer survivors at greater risk. Tackling the potential threat is as important as taking your chemo drugs, being zapped with radiation, or even going under the knife to cut the cancer out of you. It's your new "survival mode".
Long ago, when cancer happened and options were few, people didn't have to live with cancer as a stalker. Death was often swift and cruel, and time fleeting. By the time a patient was diagnosed, there might only be weeks or months. But now? Now the possibilities for survival and cure are better than ever, and growing every day. That requires a new way of thinking about cancer management. It's imperative that you recognize your stalker, assess the threat posed, and handle the aftermath of a cancer diagnosis effectively. You want to direct yourself to act, not to react, and you best do that by understanding what is out there.
Anyone who has ever dealt with a stalker over time has to come to a decision: "Do I live my life as normally as possible, take advantage of the opportunities, and stay out in the open, vulnerable to attack, or do I hide myself away, in the hope that I might survive a little longer? Do I survive or do I thrive? Do I embrace life or embrace fear?"
True inner strength comes from understanding fear and uncertainty and taking steps to manage its impact on our lives. It's the choice to sit it out or dance. Music lovers know how hard it is to not feel the rhythm, to sit still when the tune beckons. What is life without song? As the Irving Berlin song said, there may be trouble ahead, and the fidlers may flee when the going gets tough, but while we have moonlight, music, love, and romance, we should embrace the opportunities to dance. Don't ever let cancer take that away from you.
If you're a cancer survivor or a cancer caregiver, take a few pages from the "Life with a Stalker Handbook". Understanding and utilizing the lessons learned in fighting a stalker long-term can help cancer survivors function more fully in their lives.
There are a lot of similarities between cancer and stalkers. Cancer, like a stalker, can deceive, can pretend to be cooperative, when in fact it is setting up shop in another organ, sometimes even hiding in plain sight and masquerading as a benign being. It can throw its hands up in the air and appear to be walking away, all while it plots to find another tiny opening in the victim's life that can be exploited. There can be distractions, lulls, and even periods of inactivity, when you think it's finally done. You tell yourself you can get back to your life, get settled into the normal rhythms and routines, only to find your life erupting into confidence-shattering chaos and confusion once again.
Stalkers are, like cancer, very dangerous because of their unpredictability, mindset, and potential volatility. In order to fight a stalker, you have to understand the menacing behavior of the individual stalker. You can't assume that every stalker is using the same playbook. What drives this particular individual to do what he does? What does he hope to get out of it? Why is he attacking in this particular way? What does his victim have that he needs? Stalkers have certain patterns in common, but other activities and motivators are unique to the individuals.
The same is true of cancer. We treat it like it's one disease, when in fact it's hundreds of different diseases, with different triggers, behaviors, and malignancy rates. One size does not fit all.
If you've ever been the victim of a stalker, you know that panic. "What did I do to make this happen?" You review the scenes over and over again in your head, trying to figure out what it was you did to attract the attention of your stalker. Were you just too handy? Was it something you said or did, or even didn't do? Why you? Why not your neighbor down the hall? Why not someone else?
Isolated incidents involving violence can be overcome with directed and mindful cognitive exercises. You can look at a single traumatic event and put a face to it, a meaning to it that will eventually allow you to come to terms with it and make peace, provided you have the right support and psychological tools.
But how do you fight a stalker over time? So often, the stalker lurks in the shadows, hiding behind bigger obstacles while he's stalking, but the rest of the time, he usually blends into the crowd. A stalker doesn't want to get caught, because if caught, he can be apprehended, contained, neutralized, even paralyzed in his tracks -- so he feigns being something he's not. The philanthropist loves everyone. The average Joe who's minding his own business. The good guy who just happened to be passing by. The upstanding citizen who's no threat to anyone. Cancer's a lot like that. The symptoms can mimic other diseases, other issues, and that can be distracting. Doctors very often take the symptoms presented and assign them a diagnosis that has nothing to do with cancer. If they don't suspect it's cancer, they don't test for cancer.
Some stalkers are better than others at getting away with their crimes. They learn to wear rubber-soled shoes as they creep about. They get to know their victims inside and out, always in search of vulnerabilities. Victims often flee to escape their tormentors, only to find themselves in greater danger. What's a cancer survivor to do when the potential for "someday" looms on the horizon? Run away? Disappear? Bury one's head in the sand and hope it won't hurt too much when the rest of the body is left vulnerable to attack?
Stalking is, in reality, a mind game first and foremost. It's psychological warfare at its best. It's predator after prey. Sometimes victims can give their stalkers too much credit for intelligence. We imagine their power is greater than our ability to overcome, so we don't look for reasoned ways to fight back. We don't use our greatest tool, the human mind. We flee, and in doing so, miss so many opportunities to enjoy life by staying in the game. When cancer survivors wrap their heads around the notion that cancer is as much a mental battle as a physical one, they begin to understand their foe. In any battle, knowing your enemy is the most important means of directing his defeat.
Many victims of stalkers learn to live off the grid, to fly under the radar, in the hopes that they can evade their pursuers. Imagine spending all that time and energy trying to not do the things that will alert the stalker to your whereabouts or arouse his interest again. You might constantly ask yourself, "Is he going to find me again? Is he going to come after me once more?" The constant stress and distress of living with the potential threat cuts the joy out of life. You're always teetering on the edge of despair. "I have now, but what comes next?" It's the unknowing-ness of the future that hurts the most. It's the mistrust of the half-consumed moment. Fear can paralyze us. "In the blink of an eye, life can change, and I don't want it to get worse."
But that's not the only problem. Denial can often rear its ugly head in stalking situations. What happens when the stalker is in plain sight and everyone knows you're his victim? What happens when everyone around you can see the stalker, but they don't believe he poses a threat any more? People throw deterrents at stalkers all the time, in the hopes of dissuading them from acting out on their need to prey, as if that's enough. That's a lot like tossing cancer therapies at patients willy-nilly, in the hopes that something, anything, will work. Once treatment is completed, cancer survivors are just supposed to move on with their lives. They're not supposed to wonder if the radiation will create new complications, or think about the potential for a different kind of cancer because the body was weakened by the first. "Don't worry about it till it happens!" Is that really the best advice for someone who lives under the threat of another bout with cancer or complications? If I know I might have a problem at some point in the future, won't I be better able to deal with it if I am armed with the knowledge that will empower me to do battle?
The truth is the more you know about the specific threat, the better, because that's when you can develop a strategy. Even if you never have the chance to completely contain the stalker or his dangerous behavior, you can manage the danger he poses by being able to act in ways that make a difference. That's how you rebuild a realistic trust in yourself, those who support you, and even in the potential for a good life. Fear that once prevented you from taking chances gives way to confidence borne of wisdom. "Yes, cancer may come back, but if it does, I'm ready for it. I'm prepared. I have my people and I'm going to give it everything I have."
The most effective way to handle a stalker is to know him, inside and out. What makes him tick? Why is he doing this? Too generalized an understanding puts the victim at greater risk of not only triggering another incident, but also in becoming more vulnerable. There is a world of difference between a stalker who has a fantasy life and a stalker who has a secret life. Someone who is mentally unbalanced might spiral out of control without rhyme or reason. Someone who is trying to protect a skeleton in a closet will be very driven and determined in attacking his victim. His motivation for acting is self-preservation and he is willing to kill to make that happen. But stalkers are, by virtue of their covert lives, secretive. They depend on people not knowing what they are up to in order to hide.
Cancer treatments that focus on the specifics of an individual's cells, genes, overall health, and any of the factors that affect that particular type of cancer are the best type of threat management for cancer survivors. Every day, new developments in fighting the disease show that certain types of cells work in certain, somewhat predictable ways. As doctors learn more, they also learn ways to cut the cancer off from what feeds it. Just as you want to move a stalker away from his victim, to neutralize his ability to cause harm, doctors take cancer treatments to new levels every day -- by starving tumors here or by empowering the immune system there.
But where does that leave cancer patients? Still battered by the stalking, still fearful of the future?Victims of stalkers often have difficulty living normal lives because they spend so much time and energy trying to survive, just like cancer patients -- it's often a matter of knowing when you can safely poke your head out of your hidey-hole. But it's more than that. Those who have, over time, had their lives disrupted again and again, had to pick up and move once more when their stalkers located them, never really fully trust in anyone or anything. You always hold back a little part of yourself because you expect that disappointment to arrive on your doorstep once again, almost always when you least expect it. Stalkers love to terrify their victims, so they look for the chance to pop up out of the blue. Living with that stress over decades is tough. You never ever completely let your guard down. You never ever really get used to believing that life can be good. "It was good once, and it's okay now," becomes the new normal.
But in accepting how things have changed, in taking it one step at a time, and most of all, in having the right kinds of resources to identify real-time threats, victims become empowered and stalkers will, over time, lose their power to terrify. Even when you know in the back of your mind that there could be another incident, another blow, you're already thinking of what you can do to deal with it, to get past it. That's the strategy that a lot of victims use once they really come to terms with their predators. "I refuse to give you power over my life, my emotions, my heart. I will not live in fear anymore. I am willing to do what it takes to keep myself safe."
For cancer patients, the knowledge that cancer can, and might, recur is often overwhelming. It's hard to live with the maybes, the uncertainty, the possibilities. How do you manage it? How do you plan for it? Should you even consider it?
Take a lesson from victims of stalkers. Don't isolate yourself. Running away is a dangerous strategy, because your stalker will hunt you down. If you have fled, you have probably cut yourself off from your best support network, those people who will look after you and fight for you. The bigger your team, the better your chances of reducing your risk of injury or worse.
Instead, surround yourself with people who are knowledgeable about your situation. Don't be afraid to immerse yourself in the learning. Talk to other cancer survivors and learn what they know about the disease. Think of it as a self-defense strategy. If you're going to kick cancer's ass, do it right. Don't raise a little finger when your assailant comes at you with a big stick, grab a crow bar and cripple him. Let him see you are not intimidated or weak in his presence. Toss the creep to the curb.
So many times, victims of isolated incidents think it's just a one-time thing, so they never bother to learn how to look out for themselves. Lightning doesn't strike twice, right? But when you have a stalker, that's an ongoing threat, one that isn't going to stop until the stalker is permanently neutralized in his tracks. Being vigilant doesn't mean you're always terrified. The more you learn about cancer, especially your type of cancer, the more you can understand its weaknesses, its needs, and even its goals. Some kinds of tumors consume hormones to live and starving them of the hormones can prevent new occurrences. But there are side effects, aren't there? The tumor needs that same estrogen that you need to function well, and in preventing the cancer from receiving it, you suffer, too. How do you balance that?
Every day, new ways to fight cancer, to hold it back, to knock it down, are becoming available. What we knew last year is less than we know now. What we know now is less than we will know next year. By keeping up with information that can make a difference, by learning to recognize new symptoms as they sneak in, cancer survivors have a better chance of managing their disease in meaningful ways.
Just as you need to be vigilant in recognizing new signs that your stalker has resumed his bad behavior, whether you notice new scratches on your door lock or you find things have been moved in your car, those are signs you don't ignore if you've been a victim. Every long-time Stage 4 cancer patient I ever met had one thing in common. They all were proactive in dealing with new symptoms and they were willing to fight hard to survive. Those "I can do this" muscles were developed over the years of battling their unseen, seemingly unknowable foe. The harder they fought, the more they learned about cancer's cunning, and once they learned, they got busy.
Many times, cancer survivors want to turn their backs on the disease once it's under control. And so often, their families and friends want them to move on. That "let's just forget about it and act like it never happened" mindset is what often puts cancer survivors at greater risk. Tackling the potential threat is as important as taking your chemo drugs, being zapped with radiation, or even going under the knife to cut the cancer out of you. It's your new "survival mode".
Long ago, when cancer happened and options were few, people didn't have to live with cancer as a stalker. Death was often swift and cruel, and time fleeting. By the time a patient was diagnosed, there might only be weeks or months. But now? Now the possibilities for survival and cure are better than ever, and growing every day. That requires a new way of thinking about cancer management. It's imperative that you recognize your stalker, assess the threat posed, and handle the aftermath of a cancer diagnosis effectively. You want to direct yourself to act, not to react, and you best do that by understanding what is out there.
Anyone who has ever dealt with a stalker over time has to come to a decision: "Do I live my life as normally as possible, take advantage of the opportunities, and stay out in the open, vulnerable to attack, or do I hide myself away, in the hope that I might survive a little longer? Do I survive or do I thrive? Do I embrace life or embrace fear?"
True inner strength comes from understanding fear and uncertainty and taking steps to manage its impact on our lives. It's the choice to sit it out or dance. Music lovers know how hard it is to not feel the rhythm, to sit still when the tune beckons. What is life without song? As the Irving Berlin song said, there may be trouble ahead, and the fidlers may flee when the going gets tough, but while we have moonlight, music, love, and romance, we should embrace the opportunities to dance. Don't ever let cancer take that away from you.
Sunday, April 28, 2013
Can't Make a Real Difference for Cancer Families? Go Wait in the Truck -- Part Three
This is a three-part posting. You can find Part One and Part Two here.
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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.
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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.
--------------------------------------------------------------------------------------
I recently found myself at odds with an interviewer who hosts a cancer show, as I talked about in Part One of this series of posts. For me, the experience only helped me to define my goals as a cancer caregiver:
Part One Part Three
---------------------------------------------------------------------------------------
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.
Coming next -- Part Three: The Talking Points I Wanted to Cover in the Interview
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.
--------------------------------------------------------------------------------------
I recently found myself at odds with an interviewer who hosts a cancer show, as I talked about in Part One of this series of posts. For me, the experience only helped me to define my goals as a cancer caregiver:
Part One Part Three
---------------------------------------------------------------------------------------
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.
Coming next -- Part Three: The Talking Points I Wanted to Cover in the Interview
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