Friday, February 8, 2013
What Suzanne Whang Wants You to Know
It's heartening to know when someone who has struggled with cancer treatment makes it through and comes out on the other side. I wrote about Suzanne Whang's struggle with cancer in previous posts. Most people know her from her stint as a host of HGTV's "House Hunters", but she's also an actress and comedian. She brings something unique to the cancer table, not just because she's a comedian with a wild streak, but because she actually has a BA in psychology from Yale and a Masters in Cognitive Psychology from Brown.
Imagine my surprise when I found a message from her this morning in my inbox, responding to an old query. One of my readers wondered how she was doing and wanted me to find out. And today, I did.
Ms. Whang reports she's cancer-free. Wow, that's fantastic. No matter how many times I hear that kind of news, I never get tired of it. One more person who made it through the dark night to the new morning. One more person to continue to share her unique talents with the world. How lovely.
Better still, she says she's writing a book about her experiences. You just know it's going to a positive impact for cancer patients and their families. I'm looking forward to getting her take on all the ups and downs of cancer treatment.
She would like you to know that she has too many Facebook friends, but if you'd like to follow her, you can on her Twitter page -- @suzannewhang. You can also email her at gookwaffle@gmail.com
(I'm guessing from her email address that she's still thumbing her nose at political correctness and social etiquette. Not a girl to invite to the cotillion. No, she's too much fun for that. She'd be out back, doing her impressions of the debutantes. Fine by me. I'd be right there in the audience, laughing my &%$#*!>{ @^^ off....)
Monday, February 4, 2013
What Does the PACE Study Tell Us About Cancer?
In an earlier posting, I gave a pop quiz on the results of the PACE study, an effort to determine how people feel about cancer and cancer treatment in Germany, Italy, France, the UK, Japan, and the US. You can find the information on the study here:
The PACE Cancer Perception Study
Having given you a chance to see for yourself whether or not you have a true understanding of public perception about cancer, let's consider the implications for cancer families.
What's the most interesting thing about the findings? The majority of people surveyed for the study believe it takes too long for new cancer medicines to reach patients and they think more money should be spent on cancer research and cancer treatment. That speaks to the frustrations of many who feel that promise of improvement is so close, putting those cancer treatments in the hands of those who most need them can make a difference. If we weren't seeing real results hovering over the horizon, would we be so hopeful? Twenty years ago, so many people perished because the treatments for cancer were far less successful and sometimes the treatment was even harsher on the body and spirit than the disease itself. Now we can feel it coming, that next great discovery, and we want to be a part of it. We want to catch that wave and ride it all the way to a cure.
Which country had the most people with an optimistic view of cancer management? The United States. Sixty-five percent of those asked said they didn't view cancer as always having a fatal outcome. Why is that? Is it the fact that we have some amazing cancer centers that are constantly updating their cancer programs, keeping current with the latest developments? Is it that this particular group of Americans had more experience and knowledge of cancer survival? Hard to say. Maybe Americans are just normally more optimistic than people in other countries. That's a question that might be answered by a follow-up study.
What is cancer? It's not one disease, but rather a series of more than 200 diseases, which can have their origins in biologic, genetic, or environmental causes. Why is it important to know that? Not all cancers are the same. They won't respond to the same treatments the same way. They won't respond to the same medicines. Every time a patient is diagnosed with cancer, it's imperative that the type of cancer and as much information on viable options is determined by the medical team. With so many different kinds of cancer, there's no way cancer treatment is "one size fits all".
At the moment, a mere 5% of cancer patients are enrolled in clinical trials. And yet, 70% of the PACE study respondents were interested in those trials. Why? Clinical trials offer that extra chance of survival. If there's a new medicine that offers a better survival rate, wouldn't any sane human being want to try it? What's stopping them? The survey only dealt with the perceptions about cancer, so we still don't know. Is it lack of opportunity? Are cancer centers reluctant to abandon drugs with known results, even if the results are less than satisfactory, in place of experimental treatments? I don't have the answer to that.
Six out of ten people asked reported their belief that pharmaceutical companies are focused on treating cancer, rather than curing it. Why does the public believe that pharmaceutical companies are less interested in putting investment dollars into a cure? Part of that is that perception of how cancer treatment is handled. It's a communications issue, a failure to explain how things happen in research. But don't forget that with more than 200 different diseases that are lumped together as cancer, it's easy to lose sight of the progress. For every step forward, it can feel like it's taking too long to catch up. If cancer were a single disease, we would probably be far more confident in the efforts to battle it, because we'd be better able to assess the progress. But with so many different types of cancer, those little baby steps don't seem to add up as quickly.
As for satisfaction in the war on cancer, six out of ten people expressed their approval on efforts to fight the disease. Is that just because six out of ten are normally optimistic people, or do they have a reason to hope? Do they know something the rest of the population doesn't? In the survey, a group of cancer patients and cancer caregivers were interviewed, along with a larger group from the general population. The cancer patients and cancer caregivers made up a little more than one quarter of the whole group, and yet six out of ten people reported approval. Did the remainder of the people who answered positively have more experience with cancer than those who did not? Again, it's a question for another study.
Why were Japanese participants in the survey less worried about the impact of the economic factors on the treatment of cancer? Was it because their economy hasn't required cutbacks in spending for cancer treatment? Are the other five countries struggling more to fund health programs? Is cancer treatment in Japan well-funded? Are there lower cancer rates for the Japanese? Again, more questions that will have to be answered in a future study.
The French participants in the PACE survey reported the most satisfaction with the amount of money spent on cancer research in their country. Is that because of the actual amount of money put towards research, or is it the perception that the country is moving forward with the research? Is it the result of good public relations or good research? Yet another question that needs further study.
Is it surprising that nine people out of ten would be willing to share their medical records in order to help researchers and oncologists? That speaks to the heart of the perceptions of cancer patients, their families, and the general population. We understand that the more information our researchers and doctors have, the better the chances to survive the disease. We're willing to cooperate to make that happen. Some people expressed concern that the data might be misused. That's understandable, given the current climate of data collection. There are marketers and other entities that misuse the information for their own gain. Would it be misused by cancer researchers and doctors? Hard to say, but it speaks to the public's need for strict guidelines to protect privacy.
PACE stand for Patient Access to Cancer care Excellence, and the PACE network is made up of a vast group of professionals involved in all aspects of cancer research, treatment and policy. The goal is to improve how we fight cancer globally. Will it work? Only time will tell. The more success we see in cancer treatment, the more our confidence will grow. And some of that confidence will come from the public outreach that makes us all aware of new medicines and treatments. The more we know, the more proactive we will be in fighting cancer. We will take advantage of the opportunities afforded us. That's really the best chance to survive the disease, and surviving it brings each of us that much closer to a cure.
The PACE Cancer Perception Study
Having given you a chance to see for yourself whether or not you have a true understanding of public perception about cancer, let's consider the implications for cancer families.
What's the most interesting thing about the findings? The majority of people surveyed for the study believe it takes too long for new cancer medicines to reach patients and they think more money should be spent on cancer research and cancer treatment. That speaks to the frustrations of many who feel that promise of improvement is so close, putting those cancer treatments in the hands of those who most need them can make a difference. If we weren't seeing real results hovering over the horizon, would we be so hopeful? Twenty years ago, so many people perished because the treatments for cancer were far less successful and sometimes the treatment was even harsher on the body and spirit than the disease itself. Now we can feel it coming, that next great discovery, and we want to be a part of it. We want to catch that wave and ride it all the way to a cure.
Which country had the most people with an optimistic view of cancer management? The United States. Sixty-five percent of those asked said they didn't view cancer as always having a fatal outcome. Why is that? Is it the fact that we have some amazing cancer centers that are constantly updating their cancer programs, keeping current with the latest developments? Is it that this particular group of Americans had more experience and knowledge of cancer survival? Hard to say. Maybe Americans are just normally more optimistic than people in other countries. That's a question that might be answered by a follow-up study.
What is cancer? It's not one disease, but rather a series of more than 200 diseases, which can have their origins in biologic, genetic, or environmental causes. Why is it important to know that? Not all cancers are the same. They won't respond to the same treatments the same way. They won't respond to the same medicines. Every time a patient is diagnosed with cancer, it's imperative that the type of cancer and as much information on viable options is determined by the medical team. With so many different kinds of cancer, there's no way cancer treatment is "one size fits all".
At the moment, a mere 5% of cancer patients are enrolled in clinical trials. And yet, 70% of the PACE study respondents were interested in those trials. Why? Clinical trials offer that extra chance of survival. If there's a new medicine that offers a better survival rate, wouldn't any sane human being want to try it? What's stopping them? The survey only dealt with the perceptions about cancer, so we still don't know. Is it lack of opportunity? Are cancer centers reluctant to abandon drugs with known results, even if the results are less than satisfactory, in place of experimental treatments? I don't have the answer to that.
Six out of ten people asked reported their belief that pharmaceutical companies are focused on treating cancer, rather than curing it. Why does the public believe that pharmaceutical companies are less interested in putting investment dollars into a cure? Part of that is that perception of how cancer treatment is handled. It's a communications issue, a failure to explain how things happen in research. But don't forget that with more than 200 different diseases that are lumped together as cancer, it's easy to lose sight of the progress. For every step forward, it can feel like it's taking too long to catch up. If cancer were a single disease, we would probably be far more confident in the efforts to battle it, because we'd be better able to assess the progress. But with so many different types of cancer, those little baby steps don't seem to add up as quickly.
As for satisfaction in the war on cancer, six out of ten people expressed their approval on efforts to fight the disease. Is that just because six out of ten are normally optimistic people, or do they have a reason to hope? Do they know something the rest of the population doesn't? In the survey, a group of cancer patients and cancer caregivers were interviewed, along with a larger group from the general population. The cancer patients and cancer caregivers made up a little more than one quarter of the whole group, and yet six out of ten people reported approval. Did the remainder of the people who answered positively have more experience with cancer than those who did not? Again, it's a question for another study.
Why were Japanese participants in the survey less worried about the impact of the economic factors on the treatment of cancer? Was it because their economy hasn't required cutbacks in spending for cancer treatment? Are the other five countries struggling more to fund health programs? Is cancer treatment in Japan well-funded? Are there lower cancer rates for the Japanese? Again, more questions that will have to be answered in a future study.
The French participants in the PACE survey reported the most satisfaction with the amount of money spent on cancer research in their country. Is that because of the actual amount of money put towards research, or is it the perception that the country is moving forward with the research? Is it the result of good public relations or good research? Yet another question that needs further study.
Is it surprising that nine people out of ten would be willing to share their medical records in order to help researchers and oncologists? That speaks to the heart of the perceptions of cancer patients, their families, and the general population. We understand that the more information our researchers and doctors have, the better the chances to survive the disease. We're willing to cooperate to make that happen. Some people expressed concern that the data might be misused. That's understandable, given the current climate of data collection. There are marketers and other entities that misuse the information for their own gain. Would it be misused by cancer researchers and doctors? Hard to say, but it speaks to the public's need for strict guidelines to protect privacy.
PACE stand for Patient Access to Cancer care Excellence, and the PACE network is made up of a vast group of professionals involved in all aspects of cancer research, treatment and policy. The goal is to improve how we fight cancer globally. Will it work? Only time will tell. The more success we see in cancer treatment, the more our confidence will grow. And some of that confidence will come from the public outreach that makes us all aware of new medicines and treatments. The more we know, the more proactive we will be in fighting cancer. We will take advantage of the opportunities afforded us. That's really the best chance to survive the disease, and surviving it brings each of us that much closer to a cure.
Take the Cancer Quiz on World Cancer Day
One of the things that often happens to me as a cancer blogger is that companies approach me about their latest offerings. My goal is to help cancer caregivers find ways to utilize education and information to help a loved one manage the disease.
Towards that end, I was approached by a representative of Lilly Oncology Initiative, as part of a public awareness campaign of cancer, cancer treatment, and what it all means in the bigger scheme of things. Called the PACE Study, the conducted survey queried people in six countries (Germany, Italy, France the UK, Japan, and the US) to find out what the public believes about cancer, new oncology treatments, and the future for cancer patients. I want to share with you some of the highlights of that study in the form of a pop quiz, so put on your thinking cap and see what you really know about cancer perception around the globe:
1. When facing cancer, the country with the highest percentage of people who believe they can be helped by treatment is:
A. The UK
B. Japan
C. Germany
D. The US
2. Cancer is:
A. A single disease that can grow anywhere in the body and spread to other parts.
B. Ten types of malignant cells that can appear in specific organs and grow.
C. A contagious disease that is spread through poor sanitation and risky behavior.
D. A group of more than 200 diseases which are of biologic, genetic, and environmental origin.
3. Typically, only five percent of cancer patients participate in clinical drug trials. What is the percentage of people in the PACE study who think cancer patients should have greater access to these trials?
A. 70%
B. 52%
C. 21%
D. 8%
4. In the survey, 6 out of 10 have the perception that the goal of pharmaceutical companies is to:
A. cure cancer
B. treat cancer
C. medicate cancer patients
D. only develop drugs that are popular
5. How many people surveyed expressed satisfaction with the progress of cancer treatment over the last 20 years?
A. 82%
B. 60%
C. 47%
D. 35%
6. Which of the six countries surveyed had the fewest respondents concerned with current economic factors slowing down cancer research?
A. The US
B. The UK
C. Japan
D. Italy
7. Which country had the most survey respondents who were satisfied with the amount of money its country spent on cancer research?
A. Japan
B. France
C. The US
D. The UK
8. How many people surveyed would be willing to share their medical records in order to improve cancer research and treatment?
A. 90%
B. 65%
C. 42%
D. 18%
9. PACE stands for:
A. Pharmaceutical Action Committee Executives
B. Patients' Act for Cancer Education
C. Patient Access to Cancer care Excellence
D. Pharmaceutical Association Cancer Education
10. PACE is:
A. a group of the top ten pharmaceutical companies working to develop medications for cancer patients
B. a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.
C. a group of international oncologists, cancer support groups, and lobbyists seeking to improve access to cancer treatment
D. an organization of cancer advocates who want more research
THE ANSWERS ARE:
1. D. The US -- 65% don't feel that cancer is necessarily a death sentence any more. Many cancers are now better managed as a chronic disease, and some are even curable.
2. D. Cancer is a range of diseases that can be caused by a number of different kinds of factors.
3. A. 70% believe these trials should be more accessible.
4. B. Pharmaceutical companies are now working to educate the public on their research and development programs to find cures for the different types of cancer.
5. B. Six out of ten people surveyed expressed satisfaction with progress in fighting cancer.
6. C. Japan
7. B. France
8. A. Nine out of ten would be willing to share their medical records in an effort to improve cancer research and treatment, although some people expressed concern about how the data would be used.
9. C. Patient Access to Cancer care Excellence
10. B. The PACE network has a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.
Did you get all the answers correct? Perception is a very important issue in the fight against cancer. The more you know, the better able you will be to access information that can help you and your loved one manage this disease, the treatment for it, survive it, and thrive with it.
If you would like to know more about the PACE study, you can follow this link:
PACE Study on Cancer Perception
Towards that end, I was approached by a representative of Lilly Oncology Initiative, as part of a public awareness campaign of cancer, cancer treatment, and what it all means in the bigger scheme of things. Called the PACE Study, the conducted survey queried people in six countries (Germany, Italy, France the UK, Japan, and the US) to find out what the public believes about cancer, new oncology treatments, and the future for cancer patients. I want to share with you some of the highlights of that study in the form of a pop quiz, so put on your thinking cap and see what you really know about cancer perception around the globe:
1. When facing cancer, the country with the highest percentage of people who believe they can be helped by treatment is:
A. The UK
B. Japan
C. Germany
D. The US
2. Cancer is:
A. A single disease that can grow anywhere in the body and spread to other parts.
B. Ten types of malignant cells that can appear in specific organs and grow.
C. A contagious disease that is spread through poor sanitation and risky behavior.
D. A group of more than 200 diseases which are of biologic, genetic, and environmental origin.
3. Typically, only five percent of cancer patients participate in clinical drug trials. What is the percentage of people in the PACE study who think cancer patients should have greater access to these trials?
A. 70%
B. 52%
C. 21%
D. 8%
4. In the survey, 6 out of 10 have the perception that the goal of pharmaceutical companies is to:
A. cure cancer
B. treat cancer
C. medicate cancer patients
D. only develop drugs that are popular
5. How many people surveyed expressed satisfaction with the progress of cancer treatment over the last 20 years?
A. 82%
B. 60%
C. 47%
D. 35%
6. Which of the six countries surveyed had the fewest respondents concerned with current economic factors slowing down cancer research?
A. The US
B. The UK
C. Japan
D. Italy
7. Which country had the most survey respondents who were satisfied with the amount of money its country spent on cancer research?
A. Japan
B. France
C. The US
D. The UK
8. How many people surveyed would be willing to share their medical records in order to improve cancer research and treatment?
A. 90%
B. 65%
C. 42%
D. 18%
9. PACE stands for:
A. Pharmaceutical Action Committee Executives
B. Patients' Act for Cancer Education
C. Patient Access to Cancer care Excellence
D. Pharmaceutical Association Cancer Education
10. PACE is:
A. a group of the top ten pharmaceutical companies working to develop medications for cancer patients
B. a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.
C. a group of international oncologists, cancer support groups, and lobbyists seeking to improve access to cancer treatment
D. an organization of cancer advocates who want more research
THE ANSWERS ARE:
1. D. The US -- 65% don't feel that cancer is necessarily a death sentence any more. Many cancers are now better managed as a chronic disease, and some are even curable.
2. D. Cancer is a range of diseases that can be caused by a number of different kinds of factors.
3. A. 70% believe these trials should be more accessible.
4. B. Pharmaceutical companies are now working to educate the public on their research and development programs to find cures for the different types of cancer.
5. B. Six out of ten people surveyed expressed satisfaction with progress in fighting cancer.
6. C. Japan
7. B. France
8. A. Nine out of ten would be willing to share their medical records in an effort to improve cancer research and treatment, although some people expressed concern about how the data would be used.
9. C. Patient Access to Cancer care Excellence
10. B. The PACE network has a global council of patient advocates, medical professionals, policy activists, scientific researchers, and health care leaders working together to improve cancer care.
Did you get all the answers correct? Perception is a very important issue in the fight against cancer. The more you know, the better able you will be to access information that can help you and your loved one manage this disease, the treatment for it, survive it, and thrive with it.
If you would like to know more about the PACE study, you can follow this link:
PACE Study on Cancer Perception
Saturday, February 2, 2013
"Who ARE You?"
I had a very busy week. I'm in the process of updating website and blogs, streamlining material so that it makes more sense, and at the same time, editing some caregiver videos. In the midst of all this, I got a flurry of emails from a young woman who decided to question my credentials as a caregiver blogger.
There I was, up to my eyeballs in work, and she wanted to know why I didn't have an "about" section on my cancer blog. The nerve! How dare I not provide information on my background!
Actually, I did. It was buried down at the bottom of the blog because over time I had loaded so much information onto the website, it got shoved to the bottom of the pile. Part of why I was weeding and culling this week.
After she pointed out the fact that she STILL didn't know ABOUT me in subsequent emails, I realized what she was looking for wasn't my credentials. It was my pedigree. Was I even remotely her equal? She didn't seem to think so. She seemed to think I was some interloper who just dropped off the banana boat after smuggling myself into the country. And that brings me to explain what REAL credentials are, especially when it comes to caregiving.
I actually have a degree in education from a respectable university. I actually graduated with honors, with a major in education and minors in psychology and art. I actually did graduate work in psychology, information science, and media. And yes, I should have gotten the masters degree. Lord knows I have the credits at the three universities where I studied at the graduate level. But to me, what I was getting out of those classes was more important than the piece of paper. I was busy painting and writing. Maybe that's why I wasn't terribly concerned about answering the demand for information on my pedigree.
The truth is I am at heart an educator with a passion for learning. How does the brain compartmentalize and comprehend information? How do you make the connections between a terrible disease and the promise that there are ways to thrive while managing cancer? That's what a good teacher is supposed to do, help students move from Point A to Point B to Point C, building on lessons that strengthen a student's own skills.
As an educator, I know people have different ways of absorbing information. Intuitive thinkers are very different from concrete thinkers. Some people are emotionally based, others are not. How you present information matters. Propagandists know this. Political spin doctors know this. Linguists can tell you that it's a mental process that can be manipulated. But I can tell you, as someone who has witnessed cancer's devastating effects, that perception is everything when it comes to cancer treatment. What is the brain telling you about cancer? More importantly, how do I share information with you that helps to alleviate some of the fear and move you in a more positive, productive, and successful direction? There's a reason we want to keep hope alive. Hope feeds the soul.
I did my first teaching practicum in a prestigious city hospital, in the pediatrics department. I loved working with hospitalized children because it was a great challenge. I was lucky enough to have professors who believed that if a child failed in school, it was really my failure to reach into that child and tap his or her strengths to build up the weaknesses. That's a "whole person" philosophy. It put the responsibility on me to connect with each and every child and bring out the best in him or her. That's how you build the human bridge, especially in health care.
Back then, cancer deaths were more prevalent, especially with childhood leukemia. I worked with a range of children with different types of cancers, but I also worked with children who had other medical issues. Why is that important? When you're trying to figure out ways to help cancer families, it helps to know what is normal behavior and what is abnormal behavior. Hospitalized children can go through a myriad of emotions, and the causes and triggers can be complex. Knowing how children think and feel in the stages they pass through can be critical in knowing how to connect with them with what ails them. There's a difference between a four-year-old's nightmares and a ten-year-old's nightmares.
I also worked in a psychiatric admissions hospital, with adults who were unmedicated. If you've ever seen someone out of control, you know it can be scary. Again, I got to see a wide range of behaviors in adults, ranging from a sweet, gentle man who battled depression to the non-communicative man who murdered his mother during a fit. I learned that how you approach a patient can make a huge difference, and that by paying attention to visual and verbal clues, it's possible to avoid an unnecessary confrontation and get past the wall, so that the real issue can be addressed. Being able to think on your feet is a very important skill. It came in handy on more than one occasion, especially the night I had to talk a woman out of committing suicide. That's a life-and-death situation that forces you to reach deep into another soul and say, "Your life has value. This pain you feel right here, right now, will pass. You have so many reasons to live past this moment in time. Look beyond it and see all the good things you have to get you through this terrible experience." Sometimes people in crisis are so aware of their pain, that's all they can see. It looms above them like a big, black monster and intimidates them. All that self-doubt, that self-hatred is really an inability of the person to see the big picture. None of us is ever perfect. We don't live perfect lives. We don't do perfect things. But almost everyone of us has skills and strengths. When we lose sight of ourselves as a whole, we can become too focused on one aspect of our lives, and that skews the balance, forcing us into despair. Cancer can do that to the best of us, the strongest of us.
I also worked with juvenile delinquents, some of whom just had poor impulse control and others who were actually menaces to society. There's a difference between a kid who can't stop himself from reacting and a kid who spends hours engaged in fantasies about doing heinous things to people. It was a good lesson in understanding that it's more than environment that makes a kid go bad. When we allow kids to do their own thing, it's often a recipe for disaster if they're drawn to darkness. How do you point someone in a more positive, more productive direction, away from things that cause harm and onto things that makes us better people?
Over the years, I've been there for people who have experienced physical trauma and emotional anguish. Whether they were victims of crime or victims of fate, it didn't really matter. The process was the same. How do I help you to get back to being who you are, but as a better, stronger you? I took those lessons into the caregiver equation. Caregiving isn't about making someone dependent on you. It isn't about focusing on what a person can't do alone. It's about finding ways to compensate for what's not there, in order to make the person feel as whole as possible.
The damage from a traumatic event doesn't go away overnight. There is no magic wand to whisk away the pain. Many cancer patients are victims of trauma, through the battery of cancer treatments, be it radiation, surgery, and/or chemotherapy. So many times, the side effects are tougher than the actual disease. Helping someone overcome the debilitating effects of that trauma is sometimes the biggest battle of all, because we humans are, by nature, emotional creatures. We feel. But we also think. Combining logic, comfort, and compassion is a vital part of helping someone face the aftermath of trauma, but understanding how that trauma has changed someone's life is the real key. Trauma, facing it as a victim of a horrible crime or a horrible disease, has the same result if it's allowed to take its course unchecked. It will stop a person in mid-step. It will steal the confidence, the courage, and even the character from a person. That's why it's so important to empower cancer patients, not with mythic belief that they can overcome their disease, but with the real belief that this disease can be managed. It's all about quality of life.
I've had my own experiences in overcoming obstacles. Many years ago, my car was sent into a telephone pole by a distraught young woman who had just broken up with her boyfriend. It took a year of physical therapy for me to get back to a life without constant pain. Just as I was finished with all that hard work, I was a passenger in another car that was rear-ended. It was back to physical therapy all over again. That experience gave me a glimpse of the frustration that comes from finding out that your cancer is no longer in remission and you're back to square one. It's maddening to do all that hard work for what appears to be naught.
Mental health is as much a component of cancer care as is the actual physical treatment of the disease. You can throw the best medicine at a tumor, but if the patient's perception is that it's a waste of time, it's not likely the patient will thrive over time. Why? It's all about the terror of having cancer. That eats away at you. It stops you from taking positive action.
Art has always been my first love. How does this fit into being a cancer caregiver educator? As an artist, I studied perspective. From the age of nine, I practiced, practiced, practiced. A lot of people think that artists are flakes ("Who ARE you?"), but the truth is that most artists throughout history, with the exception of the last few generations, approached art with much more respect for science and mathematics. There was an understanding that perspective made all the difference in what information the eye took in. If you take an apple and you place it on a table, that is only one view. Every time you take a step to the right or the left, the apple will change. Why? There will be more or less light. There will be a different background as you move around the room. How does that fit in with cancer care? The more complete your understanding of the cancer picture, the better able you are to find tools to assist you in battling the disease or helping someone you love to battle it. Sometimes people get caught up in the darkness. They see only the despair of having cancer. It has tremendous power to make even the toughest human being feel small and helpless. But that's because we sometimes forget to look for the light. Cancer isn't a disease that happens overnight. No one ever has a tumor that just pops into place. Cancer is a disease that evolves over time. Understanding that and putting the disease into perspective can help tamp down that terror for someone battling the disease. Rome wasn't built in a day, so it will take more than a day to tear it down and rebuild. Cancer isn't a sprinting event. It's a marathon.
So, who am I? I am someone who started out with a belief, as that young college student, that I would somehow, some way, take what I learned as an educator and make sense of it for the everyday person. That's what I was in the middle of doing this week when the young woman repeatedly asked me "Who ARE you?" I believe that I have the tools, the skills, the experience, and the wisdom to make a difference in the lives of family caregivers, no matter what the issue that creates the need in a loved one to have that support. I know the value of teamwork, of attitude, of compassion, and comfort, but also in drawing out the strengths of a person who doubts and shoring up those weaknesses.
I know that uncertainty and dread are greater threats to a cancer patient than any tumor. It's not about running away from the terror that gives quality of life to someone with the disease. It's about putting the focus on the positives. It's the equivalent of turning on a light when a child believes there is a monster under the bed. Cancer patients can feel like that sometimes, can't they? There's so much about cancer we still don't know, still don't see, still don't understand, and that monster is lurking in the dark recesses of our minds, whether we are the patient or the caregiver. That's why it's so critical to know what else is in that room. Cancer patients who feel alone will often give themselves up to that terror. Cancer patients with a support team of family, friends, and good health care providers will survive longer and better. Why? Because they can avoid some of the stress that comes from having a serious disease like cancer.
In the end, stress is one of the most destructive components of any disease, and stress management is critical for cancer patients and for caregivers. Stress affects the heart, the nervous system, and even your mindset. It will kill you faster than any disease, because it robs you of the ability to enjoy your life. And what is life if you're miserable? My goal, as a caregiver educator, is to inspire other caregivers to find what works for them and for their loved ones, to build on their skills, to expand their understanding of patient psychology, to treat the whole person and the whole life. We are always bigger than any disease, any trauma, any obstacle. We don't always see that. We sometimes forget it and lose our way. Our lives are often changed by one tiny moment in time, when something terrible happens and we surrender to our fear. Rebuilding our lives takes time, energy, and focus. It takes support from those who love us and care for us. By making the effort to treat the whole person, we can overcome the disastrous parts of our lives and get back to being who we are, living the lives we were meant to live before terrible things happened to us.
You might think that the young woman who asked, "Who ARE you?" earned my scorn, but she actually did me a huge favor in questioning my pedigree. These are my credentials. This is who I am. This is what I believe. This is my experience. These are my skills. My work speaks volumes about what I know about life. I didn't become the person I am by hiding behind my pedigree. I am who I am because I took the time to use my education, my passion, and my desire to expand my understanding of how we humans are impacted by disease and disaster. It's okay if she doesn't think me worthy. What matters is that out there, every once in a while, another caregiver catches on and takes what I offer, makes it work, and improves the life of a loved one. To me, that's the best validation for what I do.
There I was, up to my eyeballs in work, and she wanted to know why I didn't have an "about" section on my cancer blog. The nerve! How dare I not provide information on my background!
Actually, I did. It was buried down at the bottom of the blog because over time I had loaded so much information onto the website, it got shoved to the bottom of the pile. Part of why I was weeding and culling this week.
After she pointed out the fact that she STILL didn't know ABOUT me in subsequent emails, I realized what she was looking for wasn't my credentials. It was my pedigree. Was I even remotely her equal? She didn't seem to think so. She seemed to think I was some interloper who just dropped off the banana boat after smuggling myself into the country. And that brings me to explain what REAL credentials are, especially when it comes to caregiving.
I actually have a degree in education from a respectable university. I actually graduated with honors, with a major in education and minors in psychology and art. I actually did graduate work in psychology, information science, and media. And yes, I should have gotten the masters degree. Lord knows I have the credits at the three universities where I studied at the graduate level. But to me, what I was getting out of those classes was more important than the piece of paper. I was busy painting and writing. Maybe that's why I wasn't terribly concerned about answering the demand for information on my pedigree.
The truth is I am at heart an educator with a passion for learning. How does the brain compartmentalize and comprehend information? How do you make the connections between a terrible disease and the promise that there are ways to thrive while managing cancer? That's what a good teacher is supposed to do, help students move from Point A to Point B to Point C, building on lessons that strengthen a student's own skills.
As an educator, I know people have different ways of absorbing information. Intuitive thinkers are very different from concrete thinkers. Some people are emotionally based, others are not. How you present information matters. Propagandists know this. Political spin doctors know this. Linguists can tell you that it's a mental process that can be manipulated. But I can tell you, as someone who has witnessed cancer's devastating effects, that perception is everything when it comes to cancer treatment. What is the brain telling you about cancer? More importantly, how do I share information with you that helps to alleviate some of the fear and move you in a more positive, productive, and successful direction? There's a reason we want to keep hope alive. Hope feeds the soul.
I did my first teaching practicum in a prestigious city hospital, in the pediatrics department. I loved working with hospitalized children because it was a great challenge. I was lucky enough to have professors who believed that if a child failed in school, it was really my failure to reach into that child and tap his or her strengths to build up the weaknesses. That's a "whole person" philosophy. It put the responsibility on me to connect with each and every child and bring out the best in him or her. That's how you build the human bridge, especially in health care.
Back then, cancer deaths were more prevalent, especially with childhood leukemia. I worked with a range of children with different types of cancers, but I also worked with children who had other medical issues. Why is that important? When you're trying to figure out ways to help cancer families, it helps to know what is normal behavior and what is abnormal behavior. Hospitalized children can go through a myriad of emotions, and the causes and triggers can be complex. Knowing how children think and feel in the stages they pass through can be critical in knowing how to connect with them with what ails them. There's a difference between a four-year-old's nightmares and a ten-year-old's nightmares.
I also worked in a psychiatric admissions hospital, with adults who were unmedicated. If you've ever seen someone out of control, you know it can be scary. Again, I got to see a wide range of behaviors in adults, ranging from a sweet, gentle man who battled depression to the non-communicative man who murdered his mother during a fit. I learned that how you approach a patient can make a huge difference, and that by paying attention to visual and verbal clues, it's possible to avoid an unnecessary confrontation and get past the wall, so that the real issue can be addressed. Being able to think on your feet is a very important skill. It came in handy on more than one occasion, especially the night I had to talk a woman out of committing suicide. That's a life-and-death situation that forces you to reach deep into another soul and say, "Your life has value. This pain you feel right here, right now, will pass. You have so many reasons to live past this moment in time. Look beyond it and see all the good things you have to get you through this terrible experience." Sometimes people in crisis are so aware of their pain, that's all they can see. It looms above them like a big, black monster and intimidates them. All that self-doubt, that self-hatred is really an inability of the person to see the big picture. None of us is ever perfect. We don't live perfect lives. We don't do perfect things. But almost everyone of us has skills and strengths. When we lose sight of ourselves as a whole, we can become too focused on one aspect of our lives, and that skews the balance, forcing us into despair. Cancer can do that to the best of us, the strongest of us.
I also worked with juvenile delinquents, some of whom just had poor impulse control and others who were actually menaces to society. There's a difference between a kid who can't stop himself from reacting and a kid who spends hours engaged in fantasies about doing heinous things to people. It was a good lesson in understanding that it's more than environment that makes a kid go bad. When we allow kids to do their own thing, it's often a recipe for disaster if they're drawn to darkness. How do you point someone in a more positive, more productive direction, away from things that cause harm and onto things that makes us better people?
Over the years, I've been there for people who have experienced physical trauma and emotional anguish. Whether they were victims of crime or victims of fate, it didn't really matter. The process was the same. How do I help you to get back to being who you are, but as a better, stronger you? I took those lessons into the caregiver equation. Caregiving isn't about making someone dependent on you. It isn't about focusing on what a person can't do alone. It's about finding ways to compensate for what's not there, in order to make the person feel as whole as possible.
The damage from a traumatic event doesn't go away overnight. There is no magic wand to whisk away the pain. Many cancer patients are victims of trauma, through the battery of cancer treatments, be it radiation, surgery, and/or chemotherapy. So many times, the side effects are tougher than the actual disease. Helping someone overcome the debilitating effects of that trauma is sometimes the biggest battle of all, because we humans are, by nature, emotional creatures. We feel. But we also think. Combining logic, comfort, and compassion is a vital part of helping someone face the aftermath of trauma, but understanding how that trauma has changed someone's life is the real key. Trauma, facing it as a victim of a horrible crime or a horrible disease, has the same result if it's allowed to take its course unchecked. It will stop a person in mid-step. It will steal the confidence, the courage, and even the character from a person. That's why it's so important to empower cancer patients, not with mythic belief that they can overcome their disease, but with the real belief that this disease can be managed. It's all about quality of life.
I've had my own experiences in overcoming obstacles. Many years ago, my car was sent into a telephone pole by a distraught young woman who had just broken up with her boyfriend. It took a year of physical therapy for me to get back to a life without constant pain. Just as I was finished with all that hard work, I was a passenger in another car that was rear-ended. It was back to physical therapy all over again. That experience gave me a glimpse of the frustration that comes from finding out that your cancer is no longer in remission and you're back to square one. It's maddening to do all that hard work for what appears to be naught.
Mental health is as much a component of cancer care as is the actual physical treatment of the disease. You can throw the best medicine at a tumor, but if the patient's perception is that it's a waste of time, it's not likely the patient will thrive over time. Why? It's all about the terror of having cancer. That eats away at you. It stops you from taking positive action.
Art has always been my first love. How does this fit into being a cancer caregiver educator? As an artist, I studied perspective. From the age of nine, I practiced, practiced, practiced. A lot of people think that artists are flakes ("Who ARE you?"), but the truth is that most artists throughout history, with the exception of the last few generations, approached art with much more respect for science and mathematics. There was an understanding that perspective made all the difference in what information the eye took in. If you take an apple and you place it on a table, that is only one view. Every time you take a step to the right or the left, the apple will change. Why? There will be more or less light. There will be a different background as you move around the room. How does that fit in with cancer care? The more complete your understanding of the cancer picture, the better able you are to find tools to assist you in battling the disease or helping someone you love to battle it. Sometimes people get caught up in the darkness. They see only the despair of having cancer. It has tremendous power to make even the toughest human being feel small and helpless. But that's because we sometimes forget to look for the light. Cancer isn't a disease that happens overnight. No one ever has a tumor that just pops into place. Cancer is a disease that evolves over time. Understanding that and putting the disease into perspective can help tamp down that terror for someone battling the disease. Rome wasn't built in a day, so it will take more than a day to tear it down and rebuild. Cancer isn't a sprinting event. It's a marathon.
So, who am I? I am someone who started out with a belief, as that young college student, that I would somehow, some way, take what I learned as an educator and make sense of it for the everyday person. That's what I was in the middle of doing this week when the young woman repeatedly asked me "Who ARE you?" I believe that I have the tools, the skills, the experience, and the wisdom to make a difference in the lives of family caregivers, no matter what the issue that creates the need in a loved one to have that support. I know the value of teamwork, of attitude, of compassion, and comfort, but also in drawing out the strengths of a person who doubts and shoring up those weaknesses.
I know that uncertainty and dread are greater threats to a cancer patient than any tumor. It's not about running away from the terror that gives quality of life to someone with the disease. It's about putting the focus on the positives. It's the equivalent of turning on a light when a child believes there is a monster under the bed. Cancer patients can feel like that sometimes, can't they? There's so much about cancer we still don't know, still don't see, still don't understand, and that monster is lurking in the dark recesses of our minds, whether we are the patient or the caregiver. That's why it's so critical to know what else is in that room. Cancer patients who feel alone will often give themselves up to that terror. Cancer patients with a support team of family, friends, and good health care providers will survive longer and better. Why? Because they can avoid some of the stress that comes from having a serious disease like cancer.
In the end, stress is one of the most destructive components of any disease, and stress management is critical for cancer patients and for caregivers. Stress affects the heart, the nervous system, and even your mindset. It will kill you faster than any disease, because it robs you of the ability to enjoy your life. And what is life if you're miserable? My goal, as a caregiver educator, is to inspire other caregivers to find what works for them and for their loved ones, to build on their skills, to expand their understanding of patient psychology, to treat the whole person and the whole life. We are always bigger than any disease, any trauma, any obstacle. We don't always see that. We sometimes forget it and lose our way. Our lives are often changed by one tiny moment in time, when something terrible happens and we surrender to our fear. Rebuilding our lives takes time, energy, and focus. It takes support from those who love us and care for us. By making the effort to treat the whole person, we can overcome the disastrous parts of our lives and get back to being who we are, living the lives we were meant to live before terrible things happened to us.
You might think that the young woman who asked, "Who ARE you?" earned my scorn, but she actually did me a huge favor in questioning my pedigree. These are my credentials. This is who I am. This is what I believe. This is my experience. These are my skills. My work speaks volumes about what I know about life. I didn't become the person I am by hiding behind my pedigree. I am who I am because I took the time to use my education, my passion, and my desire to expand my understanding of how we humans are impacted by disease and disaster. It's okay if she doesn't think me worthy. What matters is that out there, every once in a while, another caregiver catches on and takes what I offer, makes it work, and improves the life of a loved one. To me, that's the best validation for what I do.
Wednesday, January 30, 2013
Todd McGovern's Legacy -- Seas IT
Todd McGovern died at home on January 29, 2013. I read the obituary in the New York Times and found the story very inspirational. I want to share it with you because I think it will encourage you and your loved one to be as involved in life as he was as he battled cancer. He outlasted his diagnosis by several years. He fought the good fight, as so many cancer patients do. But what he left behind, what goes on in his absence, is his legacy.
Todd was just thirty, married for all of two months, when he received his terminal cancer diagnosis. Imagine that blow. Here you are, starting out your new life with your new wife. The world is your oyster. You have just about all of your adult life ahead of you. You imagine growing old with the woman you love. You're planning your future together. And then this has to happen.
Todd didn't take it lying down. He fought back. He made decisions about what he, not the cancer, was going to do for him. I have little doubt that it was not an easy struggle. Anyone who's been around a cancer treatment center knows what a tough foe cancer can be.
But this young man, still so full of promise, was determined to impact the trajectory of his life. He was not willing to surrender himself to the despair of the disease. Todd wanted to live life to the fullest.
Sometimes ordinary people become extraordinary through circumstances not of their own making. They reach deep inside and they pull out that rabbit from life's hat. Todd was such a young man.
But Todd had a partner, a supporter like no other. Amanda was surely a big part of that whole enterprise. She started Seas IT, a cancer recreation program to help them stay focused and positive throughout Todd's cancer treatment and management. She understood the beauty of the great outdoors, with all of its restorative energy. She understood that being involved and passionate about your life was a key to living, not just existing.
I get that. When I was pushed to the edge as a caregiver, especially during my mother's declining days, hiking was my one real pleasure. Every time I discovered a new trail, I was reconnecting to life. Every time I took a break from my mother's cancer, I was renewing my spirit in the sights, the sounds, and the pleasures of nature. I would come home and face my caregiver duties with a determination to start fresh. I left the house weighed down by my responsibilities and I returned refreshed. That's what recreation is all about, whether it's running a marathon, enjoying a play, or visiting a museum.
I recall lugging my mother's medical equipment through more than one art exhibit, pushing her wheelchair. Nothing made her feel more human again that visiting an art museum. We made our way through the centuries in three very different bastions of art history. And every time we returned home, my mother was satisfied that her disease had not gotten the better of her. It had not kept her from the things she loved most.
Recreation is that respite time we save for ourselves, for our wounded spirits and our challenged bodies. It's that time we throw ourselves into what makes us most happy because it helps us to be true to our souls. For some, it's running. For others, it's fishing, knitting, or maybe even finally getting around to taking those piano lessons you always wanted to have, but never got around to doing. Recreation is all about you, not your disease. It's about working on your putt instead of fretting how long your bone cancer will take to kill you. It's about throwing that clay onto your potter's wheel and creating a masterpiece.
It's about doing, not just dreaming. It's about getting off that recliner and getting back out into the world, where you belong. It's about shutting off that little voice in your head that says you should just raise the white flag and be done with it. It's about shaking off the terror of having cancer and living your best life inspite of it. Todd had cancer, but Todd also had life and a woman who loved him. That's a very powerful force that creates positive energy, that extends life even against the odds.
So often cancer patients find their lives limited by the rigors of treatment. They spend their lives going back and forth to the hospital, getting scanned, getting chemo and/or radiation. That's really when a lot of people begin to give up. If all you see is your bed and your doctor, the message you receive is that life as you knew it is over.
Todd and Amanda McGovern saw past that limitation. They knew they needed more. They knew other cancer patients needed more. Seas IT is all about staying as active as is possible during cancer management. It's about using recreation to keep spirits up, to keep hearts open, to keep hope alive.
Todd lived long enough to see his twin sons born last June. He lived long enough to pass along his passion for recreation to those cancer patients who walk in his footsteps, who come up behind him. He lived long enough to share with us a very important secret for cancer patients. The more normal your life is with cancer, the better you will survive it.
Why is this important? Any cancer patient can tell you that in each new day that dawns, the promise of a cure hides within the heart. That promise wasn't there unendingly for Todd. His life ended too soon when his time ran out. But because he and Amanda shared their secret about the pleasures and the power of recreation, they may have saved countless other lives, not by Todd's dying, but by his way of living. In surviving so long with his terminal cancer, Todd showed us that the individual has some personal power to overcome even the toughest of foes. Couple that with new cancer research and new medicines, and that is how a cure is discovered. One small step at a time will lead us to the end of this insidious disease.
Even as his small sons begin to find their way in this world, their father's legacy will live on. As they grow, as they thrive, let them be inspired by a man who wasn't willing or able to surrender to his cancer. He rose above it and was made better by it. He became an inspiration and a teacher, whose lessons live on now in Seas IT.
If you would like to know more about the organization Amanda and Todd McGovern created, follow this link:
Todd was just thirty, married for all of two months, when he received his terminal cancer diagnosis. Imagine that blow. Here you are, starting out your new life with your new wife. The world is your oyster. You have just about all of your adult life ahead of you. You imagine growing old with the woman you love. You're planning your future together. And then this has to happen.
Todd didn't take it lying down. He fought back. He made decisions about what he, not the cancer, was going to do for him. I have little doubt that it was not an easy struggle. Anyone who's been around a cancer treatment center knows what a tough foe cancer can be.
But this young man, still so full of promise, was determined to impact the trajectory of his life. He was not willing to surrender himself to the despair of the disease. Todd wanted to live life to the fullest.
Sometimes ordinary people become extraordinary through circumstances not of their own making. They reach deep inside and they pull out that rabbit from life's hat. Todd was such a young man.
But Todd had a partner, a supporter like no other. Amanda was surely a big part of that whole enterprise. She started Seas IT, a cancer recreation program to help them stay focused and positive throughout Todd's cancer treatment and management. She understood the beauty of the great outdoors, with all of its restorative energy. She understood that being involved and passionate about your life was a key to living, not just existing.
I get that. When I was pushed to the edge as a caregiver, especially during my mother's declining days, hiking was my one real pleasure. Every time I discovered a new trail, I was reconnecting to life. Every time I took a break from my mother's cancer, I was renewing my spirit in the sights, the sounds, and the pleasures of nature. I would come home and face my caregiver duties with a determination to start fresh. I left the house weighed down by my responsibilities and I returned refreshed. That's what recreation is all about, whether it's running a marathon, enjoying a play, or visiting a museum.
I recall lugging my mother's medical equipment through more than one art exhibit, pushing her wheelchair. Nothing made her feel more human again that visiting an art museum. We made our way through the centuries in three very different bastions of art history. And every time we returned home, my mother was satisfied that her disease had not gotten the better of her. It had not kept her from the things she loved most.
Recreation is that respite time we save for ourselves, for our wounded spirits and our challenged bodies. It's that time we throw ourselves into what makes us most happy because it helps us to be true to our souls. For some, it's running. For others, it's fishing, knitting, or maybe even finally getting around to taking those piano lessons you always wanted to have, but never got around to doing. Recreation is all about you, not your disease. It's about working on your putt instead of fretting how long your bone cancer will take to kill you. It's about throwing that clay onto your potter's wheel and creating a masterpiece.
It's about doing, not just dreaming. It's about getting off that recliner and getting back out into the world, where you belong. It's about shutting off that little voice in your head that says you should just raise the white flag and be done with it. It's about shaking off the terror of having cancer and living your best life inspite of it. Todd had cancer, but Todd also had life and a woman who loved him. That's a very powerful force that creates positive energy, that extends life even against the odds.
So often cancer patients find their lives limited by the rigors of treatment. They spend their lives going back and forth to the hospital, getting scanned, getting chemo and/or radiation. That's really when a lot of people begin to give up. If all you see is your bed and your doctor, the message you receive is that life as you knew it is over.
Todd and Amanda McGovern saw past that limitation. They knew they needed more. They knew other cancer patients needed more. Seas IT is all about staying as active as is possible during cancer management. It's about using recreation to keep spirits up, to keep hearts open, to keep hope alive.
Todd lived long enough to see his twin sons born last June. He lived long enough to pass along his passion for recreation to those cancer patients who walk in his footsteps, who come up behind him. He lived long enough to share with us a very important secret for cancer patients. The more normal your life is with cancer, the better you will survive it.
Why is this important? Any cancer patient can tell you that in each new day that dawns, the promise of a cure hides within the heart. That promise wasn't there unendingly for Todd. His life ended too soon when his time ran out. But because he and Amanda shared their secret about the pleasures and the power of recreation, they may have saved countless other lives, not by Todd's dying, but by his way of living. In surviving so long with his terminal cancer, Todd showed us that the individual has some personal power to overcome even the toughest of foes. Couple that with new cancer research and new medicines, and that is how a cure is discovered. One small step at a time will lead us to the end of this insidious disease.
Even as his small sons begin to find their way in this world, their father's legacy will live on. As they grow, as they thrive, let them be inspired by a man who wasn't willing or able to surrender to his cancer. He rose above it and was made better by it. He became an inspiration and a teacher, whose lessons live on now in Seas IT.
If you would like to know more about the organization Amanda and Todd McGovern created, follow this link:
Monday, December 31, 2012
Suzanne Whang -- Still Feisty and Funny
Some time ago, when I wrote about her disappearance from House Hunters, a reader asked me what Suzanne Whang's status was. This long-time cancer survivor with a few impressive psychology credentials to her name was still struggling to beat back the big beast. These days? Suzanne Whang is busy tweeting and posting. That's good news for fans.
If you're looking to find her and follow her on Twitter, her user name is @suzannewhang. Fair warning -- this lady is NOT for burning. She's not demure or dainty. She could easily beat back the toughest sailor on the waterfront with her salty language (Hey -- cancer survivors HAVE to be tough!)
If you want to find her and follow her on Facebook, she's Suzanne Whang:
Suzanne Whang on Facebook
Why do cancer survivors and those just starting out need to hear from her? Because it takes real courage to fight a disease like this, and attitude is everything. Suzanne is NOT one to hold back on that front. That's okay. Maybe, if nothing else, hearing it from her will spike your interest in not surrendering to this monster under the bed. You won't be as afraid to confront the elephant in the room. And if you like to live vicariously, she'll be happy to say all those incredibly rude, outrageous things you've been thinking. She might even get you to laugh. And laughter is always the best medicine for whatever ails you. There are real physical benefits from a belly laugh -- you breathe better, your blood flows better, your mental health improves. But it's what a good belly laugh does for the human spirit that counts the most. Rise above cancer, even just for a moment, and you are no longer in its grip. Set that disease aside and you get to live your life again because you choose to laugh, instead of cry. Take back the "remote control" on your life and fill it with mirth. You may not control the events you experience, but you sure control the replay action. Never forget that.
-----------------------------------------------------------------------------
Take a break and read a free ebook, just for fun. Get a copy for free (Amazon and Barnes & Noble charge a 99-cent fee, but you can get it at Smashwords in all popular formats -- sign up with a free account):
If you're looking to find her and follow her on Twitter, her user name is @suzannewhang. Fair warning -- this lady is NOT for burning. She's not demure or dainty. She could easily beat back the toughest sailor on the waterfront with her salty language (Hey -- cancer survivors HAVE to be tough!)
If you want to find her and follow her on Facebook, she's Suzanne Whang:
Suzanne Whang on Facebook
Why do cancer survivors and those just starting out need to hear from her? Because it takes real courage to fight a disease like this, and attitude is everything. Suzanne is NOT one to hold back on that front. That's okay. Maybe, if nothing else, hearing it from her will spike your interest in not surrendering to this monster under the bed. You won't be as afraid to confront the elephant in the room. And if you like to live vicariously, she'll be happy to say all those incredibly rude, outrageous things you've been thinking. She might even get you to laugh. And laughter is always the best medicine for whatever ails you. There are real physical benefits from a belly laugh -- you breathe better, your blood flows better, your mental health improves. But it's what a good belly laugh does for the human spirit that counts the most. Rise above cancer, even just for a moment, and you are no longer in its grip. Set that disease aside and you get to live your life again because you choose to laugh, instead of cry. Take back the "remote control" on your life and fill it with mirth. You may not control the events you experience, but you sure control the replay action. Never forget that.
-----------------------------------------------------------------------------
Take a break and read a free ebook, just for fun. Get a copy for free (Amazon and Barnes & Noble charge a 99-cent fee, but you can get it at Smashwords in all popular formats -- sign up with a free account):
Saturday, December 22, 2012
Tequila's Gift to the World -- A Journey of Courage in the Face of Cancer
You will never get to meet Tequila Sepulveda. She died in the middle of March, earlier this year. But she left the world a wondrous gift, in the form of her blog, "Must not Fear".
Must not Fear
Oh, I know what you might be thinking -- you can't bear to read the thoughts, hopes, and worries of yet another cancer victim. It's too heartbreakingly painful to know that she failed to beat back the Beast. But you would be wrong. Tequila has left a glorious legacy. You see, she gave us lessons in how to live with cancer, how to make the best of the worst thing ever, and she did it with so much gusto, it's hard not to feel her enthusiasm for love, family, and life.
If anyone ever embodied the concept of quality of life in the face of overwhelming odds, it is Tequila Sepulveda. Yes, she was given a diagnosis of Stage IV esophageal cancer in September of 2010, and yes, she was struck again in May of 2011 by even more disastrous news, adrenal gland cancer. You might expect that to have done her in, but Tequila was tested by many other issues along the way, including COPD and a much earlier bout with cancer that was successfully treated.
So, what will you find if you read her blog? You will find the quintessential primer on what helps a cancer patient survive against the odds. In those words she wrote, she gave us an understanding of how a person can rise above those terrifying obstacles and continue to enjoy life as best as possible, even as life slips away.
Tequila was a business analyst, and that's a good part of why her blog is so helpful. She was constantly assessing her life, from the medications she took to the effects on her body, from her emotions to her hopes and desires. She was on a quest to vanquish the fear, and as you read back through all the many posts, you begin to understand what an amazing woman she really was. But she was made amazing by the circle that cared for her, and they were made amazing by her.
So often, cancer patients become bitter and angry with their circumstances, and the last few months of life can sometimes be full of rage, sadness, or even despair. Tequila chose not to live that way. She made a brave decision to fight the fear any way she could. And in doing so, she constantly reached out to remain connected to life. That connection is critical to quality of life. It's what helps us understand that we can get through the painful and difficult times if we recognize the love. Tequila told us what helped her to get through her ordeal -- it was all the family and friends who stood by her, who encouraged her, especially when the pain was great and she was at the point of "abysmal despair". Heed those words, cancer caregivers. Understand what she is telling us. We can and we do make a difference when we reach out to our loved ones, when we light a candle in the darkness.
But it was more than that. Tequila was a "people person", and even as she fought hard to battle the cancer, she worked with her medical team. She followed their advice and paid attention to what worked and what didn't. She communicated back and forth in her effort to have the best quality of life. That's important for cancer patients. If doctors and nurses are aware of a patient's problems with medication, they can make adjustments. And when it's not possible to make adjustments, sometimes they can help a patient cope. Palliative care is so critical for people managing such serious diseases. How well you feel affects your outlook on life, and even when there is no cure for the disease, comfort medicine can ease the stress.
This is a great blog to read when you're feeling helpless because Tequila was filled with hope. Even as the cancer grew and began to take over, read between the lines. Listen to the human spirit at work. Whether it's fretting about her vegetables, which her sisters protected from the cold, or her beloved dogs, Tequila spent every day engaged in the life around her. She was so appreciative of those who cared for her, but I suspect it was oh-so-very-mutual. That's because Tequila was Tequila, a lover of life. She never seemed to lose her passion, her joie de vivre. She embraced everything good -- chocolate, chihuahuas, wine, flowers, food, conversation, and especially time spent with those who mattered most to her. Appreciating the sweet things in life is an art, and Tequila was an experienced connoisseur.
Her words speak of more than just this mortal coil that keeps us grounded here on earth. She saw greater things beyond the fear she fought so hard to overcome. She saw the beauty in the human spirit. When you are filled with doubts, her genuine words will remind you to live in the here-and-now, to embrace the joy and use it to propel yourself above the fear, the doubts, and the anger.
There are no miracles beyond those contained within the human heart, no last-minute reprieve for Tequila or her circle of family and friends. She does die, and sadly, we know but a small portion of that loss. But that gift she left us -- that we are what we are and who we are, with the power to rise above our misery --is important for those of us who strive to live life as well as possible. Her blog reminds us that cancer doesn't always win. Tequila chose to vanquish her fear and she succeeded, by seeking out love every day she survived. She embraced it, embodied it, and encouraged it in others. And she left us with instructions that we, too, should reach out and grab it, share it, grow it. These are not empty words. By the end of her life, Tequila was a master who proved that love does really conquer all, for she brought people together in a world that is too often fractured by selfishness, self-loathing, and sorrow. Tequila was a light in this world, and even though she is now gone, that light lives on.
Must not Fear
Oh, I know what you might be thinking -- you can't bear to read the thoughts, hopes, and worries of yet another cancer victim. It's too heartbreakingly painful to know that she failed to beat back the Beast. But you would be wrong. Tequila has left a glorious legacy. You see, she gave us lessons in how to live with cancer, how to make the best of the worst thing ever, and she did it with so much gusto, it's hard not to feel her enthusiasm for love, family, and life.
If anyone ever embodied the concept of quality of life in the face of overwhelming odds, it is Tequila Sepulveda. Yes, she was given a diagnosis of Stage IV esophageal cancer in September of 2010, and yes, she was struck again in May of 2011 by even more disastrous news, adrenal gland cancer. You might expect that to have done her in, but Tequila was tested by many other issues along the way, including COPD and a much earlier bout with cancer that was successfully treated.
So, what will you find if you read her blog? You will find the quintessential primer on what helps a cancer patient survive against the odds. In those words she wrote, she gave us an understanding of how a person can rise above those terrifying obstacles and continue to enjoy life as best as possible, even as life slips away.
Tequila was a business analyst, and that's a good part of why her blog is so helpful. She was constantly assessing her life, from the medications she took to the effects on her body, from her emotions to her hopes and desires. She was on a quest to vanquish the fear, and as you read back through all the many posts, you begin to understand what an amazing woman she really was. But she was made amazing by the circle that cared for her, and they were made amazing by her.
So often, cancer patients become bitter and angry with their circumstances, and the last few months of life can sometimes be full of rage, sadness, or even despair. Tequila chose not to live that way. She made a brave decision to fight the fear any way she could. And in doing so, she constantly reached out to remain connected to life. That connection is critical to quality of life. It's what helps us understand that we can get through the painful and difficult times if we recognize the love. Tequila told us what helped her to get through her ordeal -- it was all the family and friends who stood by her, who encouraged her, especially when the pain was great and she was at the point of "abysmal despair". Heed those words, cancer caregivers. Understand what she is telling us. We can and we do make a difference when we reach out to our loved ones, when we light a candle in the darkness.
But it was more than that. Tequila was a "people person", and even as she fought hard to battle the cancer, she worked with her medical team. She followed their advice and paid attention to what worked and what didn't. She communicated back and forth in her effort to have the best quality of life. That's important for cancer patients. If doctors and nurses are aware of a patient's problems with medication, they can make adjustments. And when it's not possible to make adjustments, sometimes they can help a patient cope. Palliative care is so critical for people managing such serious diseases. How well you feel affects your outlook on life, and even when there is no cure for the disease, comfort medicine can ease the stress.
This is a great blog to read when you're feeling helpless because Tequila was filled with hope. Even as the cancer grew and began to take over, read between the lines. Listen to the human spirit at work. Whether it's fretting about her vegetables, which her sisters protected from the cold, or her beloved dogs, Tequila spent every day engaged in the life around her. She was so appreciative of those who cared for her, but I suspect it was oh-so-very-mutual. That's because Tequila was Tequila, a lover of life. She never seemed to lose her passion, her joie de vivre. She embraced everything good -- chocolate, chihuahuas, wine, flowers, food, conversation, and especially time spent with those who mattered most to her. Appreciating the sweet things in life is an art, and Tequila was an experienced connoisseur.
Her words speak of more than just this mortal coil that keeps us grounded here on earth. She saw greater things beyond the fear she fought so hard to overcome. She saw the beauty in the human spirit. When you are filled with doubts, her genuine words will remind you to live in the here-and-now, to embrace the joy and use it to propel yourself above the fear, the doubts, and the anger.
There are no miracles beyond those contained within the human heart, no last-minute reprieve for Tequila or her circle of family and friends. She does die, and sadly, we know but a small portion of that loss. But that gift she left us -- that we are what we are and who we are, with the power to rise above our misery --is important for those of us who strive to live life as well as possible. Her blog reminds us that cancer doesn't always win. Tequila chose to vanquish her fear and she succeeded, by seeking out love every day she survived. She embraced it, embodied it, and encouraged it in others. And she left us with instructions that we, too, should reach out and grab it, share it, grow it. These are not empty words. By the end of her life, Tequila was a master who proved that love does really conquer all, for she brought people together in a world that is too often fractured by selfishness, self-loathing, and sorrow. Tequila was a light in this world, and even though she is now gone, that light lives on.
Monday, November 19, 2012
Holiday Tips for Cancer Caregivers
If you're a cancer caregiver, you know that cancer treatment sometimes knocks the stuffing out of your loved one. That doesn't mean you can't both enjoy the holidays. Plan ahead.
1. Know when your loved one is likely to be full of energy and when your loved one is likely to be dragging his or her wagon. Chemotherapy, radiation, and other treatments sometimes leave patients feeling exhausted, in pain, or otherwise debilitated. Don't let this deter you!
SOLUTION: Plan for fun -- If you're loved one is lively in the morning, why not start a new tradition? Brunch can be a tasty alternative to a big, heavy meal at the end of the day, when your loved one is ready for bed. Brunch often includes foods that are appealing to cancer patients and have a lot of calories to keep the weight on. You can even slip in foods that are easy to eat -- shakes, eggs, pancakes, waffles....
2. Know when your loved one is more vulnerable to germs, bacteria, and other things that can cause serious health threats -- the immune system is already working hard, so take precautions!
SOLUTION: Plan for a safe holiday -- Make hand sanitizer available for visitors, limit contact with crowds, and request people with the sniffles stay away (they can still offer video chats, phone calls, emails, and other greetings.)
If you go out and about, choose quieter, less-crowded restaurants, movie theaters, and other public spaces -- take in a matinee, instead of an evening movie; have dinner in a less hectic restaurant, where you and your loved one won't feel rushed; go for a scenic drive and take in the sights.
3. Know your own limits on how much energy you have to put into the holiday!
SOLUTION: Take as many shortcuts as you can to make it easier to entertain. Focus on having fun. Break the guilt cycle by reminding yourself that these shortcuts are because of your loved one's needs and your own limited energy. Next year, you can go back to the traditions.
4. Know what you will do if your loved one becomes too exhausted to enjoy the activity!
SOLUTION: Talk ahead of time and know how your loved one wants to handle any emergency. If you're at home, he or she may just want to go lie down for a bit, or may want to call it a day. If you're out somewhere, you may want to leave. If you're at another home and your loved one feels comfortable, you might suggest a short lie-down on a sofa or bed.
Be encouraging in presenting options. Choose the activities wisely. Surround your loved one with people who are supportive, patient, and understanding in how cancer and treatment affect your loved one. Always respect your loved one's decision on what to do. It's important that cancer patients feel empowered.
In the meantime, don't feel shortchanged -- be creative!
If you're having pizza on paper plates, choose a festive design. Easy clean-up. Add napkins and colorful cups, throw up some decorations and streamers, and it's all about the party, not the cancer.
Ask family and friends to help decorate the house, inside or out -- put on a pot of coffee, sit back, and watch the lights go up.
Let others pitch in -- make the meal pot luck and they can bring food and drink to share.
Focus on the conversations, the connections. That's what really matters.
Don't sweat the small stuff. Celebrate the good things you have in your life at this moment in time.
1. Know when your loved one is likely to be full of energy and when your loved one is likely to be dragging his or her wagon. Chemotherapy, radiation, and other treatments sometimes leave patients feeling exhausted, in pain, or otherwise debilitated. Don't let this deter you!
SOLUTION: Plan for fun -- If you're loved one is lively in the morning, why not start a new tradition? Brunch can be a tasty alternative to a big, heavy meal at the end of the day, when your loved one is ready for bed. Brunch often includes foods that are appealing to cancer patients and have a lot of calories to keep the weight on. You can even slip in foods that are easy to eat -- shakes, eggs, pancakes, waffles....
2. Know when your loved one is more vulnerable to germs, bacteria, and other things that can cause serious health threats -- the immune system is already working hard, so take precautions!
SOLUTION: Plan for a safe holiday -- Make hand sanitizer available for visitors, limit contact with crowds, and request people with the sniffles stay away (they can still offer video chats, phone calls, emails, and other greetings.)
If you go out and about, choose quieter, less-crowded restaurants, movie theaters, and other public spaces -- take in a matinee, instead of an evening movie; have dinner in a less hectic restaurant, where you and your loved one won't feel rushed; go for a scenic drive and take in the sights.
3. Know your own limits on how much energy you have to put into the holiday!
SOLUTION: Take as many shortcuts as you can to make it easier to entertain. Focus on having fun. Break the guilt cycle by reminding yourself that these shortcuts are because of your loved one's needs and your own limited energy. Next year, you can go back to the traditions.
4. Know what you will do if your loved one becomes too exhausted to enjoy the activity!
SOLUTION: Talk ahead of time and know how your loved one wants to handle any emergency. If you're at home, he or she may just want to go lie down for a bit, or may want to call it a day. If you're out somewhere, you may want to leave. If you're at another home and your loved one feels comfortable, you might suggest a short lie-down on a sofa or bed.
Be encouraging in presenting options. Choose the activities wisely. Surround your loved one with people who are supportive, patient, and understanding in how cancer and treatment affect your loved one. Always respect your loved one's decision on what to do. It's important that cancer patients feel empowered.
In the meantime, don't feel shortchanged -- be creative!
If you're having pizza on paper plates, choose a festive design. Easy clean-up. Add napkins and colorful cups, throw up some decorations and streamers, and it's all about the party, not the cancer.
Ask family and friends to help decorate the house, inside or out -- put on a pot of coffee, sit back, and watch the lights go up.
Let others pitch in -- make the meal pot luck and they can bring food and drink to share.
Focus on the conversations, the connections. That's what really matters.
Don't sweat the small stuff. Celebrate the good things you have in your life at this moment in time.
Monday, August 6, 2012
In Defense of Chemotherapy
News stations are reporting that chemotherapy can actually make tumors grow, increasing their aggressiveness. My first thought upon hearing this was that people might unnecessarily turn away from cancer treatment on the assumption that chemotherapy does no good.
Back when I did my teaching practicum in the pediatrics department of a big city hospital, I used to sit with children who had any of a variety of ills. I met a wide range of children with cancer, from those with brain tumors to those with leukemia. Back then, the survival rate was dismal. Cancer was a death sentence. Cancer treatment was a tiny ray of hope to cut through that death sentence. In some cases, it was a little more time. In others, it was remission until the cancer kicked in again, if it did. We've come a long, long way since those days.
Even in my mother's case, that chemotherapy made her life better for a while. When I recall the days before her lung cancer was diagnosed, I remember days when she could not leave her chair because breathing came with great difficulty. For months, she had complained to her pulmonologist that she was having trouble. He chalked it up to emphysema and COPD. "Put her in a wheelchair," was his solution. It was only when an infection landed my mother in the hospital that the cancer was found. By then, it was inoperable. That's why I defend chemotherapy as a tool. I understand the effect it had on my mother and I know she was glad for the extra time she had to prepare for the end of life.
I say that she had extra time because that cancer was inoperable. She was already dying when the cancer was discovered. She was unable to eat, weak, stuck in a wheelchair, miserable and frustrated. Without that chemotherapy, she would have died much, much sooner. And there is much she would have missed in life.
Cancer can move quickly in some cases, slowly in others. For my mother, the extra time she had to live her life allowed her to finish the unfinished things that weighed on her mind. And when she felt that the struggle was more than she wanted to continue, she chose to stop. She was lucky. She had a great oncologist who was very supportive.
So, for this elderly woman with inoperable cancer, what did chemotherapy do for the extra months of her life? My mother went from being stuck in a chair, because she couldn't breathe, to getting out, traveling, having fun. She was able, for some months, to give up her oxygen tank, that heavy weight that constantly reminded her she couldn't breathe. That was freedom. That was heaven for a woman who lived to eat at her favorite restaurants and to go for long drives to see the sights. It was Red Hat gatherings with the ladies and senior lunches at the community center. It was family celebrations and reunions. The chemotherapy helped shrink that cancer enough that she could breathe on her own and she made good use of the extra time.
It's easy to think there is no point in going for chemotherapy when you hear news stories telling you that chemotherapy can make cancers grow. That's not necessarily the whole story you need to know. Cancer is a tough disease, and in the last fifty years, there have been many, many new ways to treat the disease. Every day, researchers are working hard to find the new medications that will target it more successfully. Every day, oncologists and hematologists are tweaking chemotherapy treatments to be less damaging and more effective.
Cancer treatment is always complicated by individual needs, by how the body handles this drug or that. No two patients are the same, and the better doctors get at profiling the cancer and determining the best course of treatment based on the type of cellular and molecular issues involved, the smoother the treatment goes.
Before you consider stopping any cancer treatment, ask for information that is specific to you, to your cancer, to your loved one's cancer. Don't ask your neighbor, your garbage man, your cashier at the grocery store, your Aunt Gert who runs a gift shop, or even a stranger on the street. Ask your medical team, the people who are on the front lines in the war on cancer. Ask those who have seen what works and what doesn't work over years, who have seen what happens to people who are treated and those who are not. Ask what your survival rate is without it. Ask what your survival rate is with it.
So many things have changed about chemotherapy treatments over the years. Some cancers are less aggressive than others, and over time, researchers have found that sometimes no treatment or a little treatment is better than a lot of treatment. That's why we need good researchers. That's why we need good studies that take a hard look at every aspect of cancer treatment. We should not fear finding the answers, even if they take us in a different direction. We need to know the truth about cancer and about its treatments.
When all is said and done, you want to survive cancer as well as is possible. You want quality of life, so you can spend your time doing what matters most to you and your loved ones. You want to manage your disease, so that it doesn't manage you. Don't let the news reports about chemotherapy terrify you or turn you away from chemotherapy that can make your life more comfortable and keep you active longer. Wonder, ask, demand, seek -- be active in the fight against cancer because it matters, life matters, you matter.
For more help with your role as a cancer caregiver, please visit The Practical Caregiver Guides
Back when I did my teaching practicum in the pediatrics department of a big city hospital, I used to sit with children who had any of a variety of ills. I met a wide range of children with cancer, from those with brain tumors to those with leukemia. Back then, the survival rate was dismal. Cancer was a death sentence. Cancer treatment was a tiny ray of hope to cut through that death sentence. In some cases, it was a little more time. In others, it was remission until the cancer kicked in again, if it did. We've come a long, long way since those days.
Even in my mother's case, that chemotherapy made her life better for a while. When I recall the days before her lung cancer was diagnosed, I remember days when she could not leave her chair because breathing came with great difficulty. For months, she had complained to her pulmonologist that she was having trouble. He chalked it up to emphysema and COPD. "Put her in a wheelchair," was his solution. It was only when an infection landed my mother in the hospital that the cancer was found. By then, it was inoperable. That's why I defend chemotherapy as a tool. I understand the effect it had on my mother and I know she was glad for the extra time she had to prepare for the end of life.
I say that she had extra time because that cancer was inoperable. She was already dying when the cancer was discovered. She was unable to eat, weak, stuck in a wheelchair, miserable and frustrated. Without that chemotherapy, she would have died much, much sooner. And there is much she would have missed in life.
Cancer can move quickly in some cases, slowly in others. For my mother, the extra time she had to live her life allowed her to finish the unfinished things that weighed on her mind. And when she felt that the struggle was more than she wanted to continue, she chose to stop. She was lucky. She had a great oncologist who was very supportive.
So, for this elderly woman with inoperable cancer, what did chemotherapy do for the extra months of her life? My mother went from being stuck in a chair, because she couldn't breathe, to getting out, traveling, having fun. She was able, for some months, to give up her oxygen tank, that heavy weight that constantly reminded her she couldn't breathe. That was freedom. That was heaven for a woman who lived to eat at her favorite restaurants and to go for long drives to see the sights. It was Red Hat gatherings with the ladies and senior lunches at the community center. It was family celebrations and reunions. The chemotherapy helped shrink that cancer enough that she could breathe on her own and she made good use of the extra time.
It's easy to think there is no point in going for chemotherapy when you hear news stories telling you that chemotherapy can make cancers grow. That's not necessarily the whole story you need to know. Cancer is a tough disease, and in the last fifty years, there have been many, many new ways to treat the disease. Every day, researchers are working hard to find the new medications that will target it more successfully. Every day, oncologists and hematologists are tweaking chemotherapy treatments to be less damaging and more effective.
Cancer treatment is always complicated by individual needs, by how the body handles this drug or that. No two patients are the same, and the better doctors get at profiling the cancer and determining the best course of treatment based on the type of cellular and molecular issues involved, the smoother the treatment goes.
Before you consider stopping any cancer treatment, ask for information that is specific to you, to your cancer, to your loved one's cancer. Don't ask your neighbor, your garbage man, your cashier at the grocery store, your Aunt Gert who runs a gift shop, or even a stranger on the street. Ask your medical team, the people who are on the front lines in the war on cancer. Ask those who have seen what works and what doesn't work over years, who have seen what happens to people who are treated and those who are not. Ask what your survival rate is without it. Ask what your survival rate is with it.
So many things have changed about chemotherapy treatments over the years. Some cancers are less aggressive than others, and over time, researchers have found that sometimes no treatment or a little treatment is better than a lot of treatment. That's why we need good researchers. That's why we need good studies that take a hard look at every aspect of cancer treatment. We should not fear finding the answers, even if they take us in a different direction. We need to know the truth about cancer and about its treatments.
When all is said and done, you want to survive cancer as well as is possible. You want quality of life, so you can spend your time doing what matters most to you and your loved ones. You want to manage your disease, so that it doesn't manage you. Don't let the news reports about chemotherapy terrify you or turn you away from chemotherapy that can make your life more comfortable and keep you active longer. Wonder, ask, demand, seek -- be active in the fight against cancer because it matters, life matters, you matter.
For more help with your role as a cancer caregiver, please visit The Practical Caregiver Guides
Monday, July 30, 2012
Celebrity Cancer
People often reach out to me to share facets of their lives with cancer or with someone who has cancer. Sometimes it's a company trying to market a product, service, or personality. Sometimes it's a real human being with a comment that just about breaks your heart.
If there's one thing I've learned, you can be as famous as all get out and still have a disease like cancer. Cancer doesn't respect fame or fortune. It's that fortune that cancer sometimes goes after. It can be tough to handle the price of cancer treatment, especially when you don't have (enough) health insurance.
Ever since I wrote about Suzanne Whang's cancer, I've had people contacting me. They seem to be coming out of the woodwork. Some want the opportunity to use my blog to publicize their own efforts. I am wary of people looking to make a buck on the backs of cancer patients.
I am also wary of providing opportunities to raise funds for specific cancer patients. That's not really what I do.
When I write about a celebrity like Ms. Whang, I don't do it because I'm looking to be her next best bud. I don't do it to schmooze with the big fish. I do it because I have enjoyed her show on HGTV over the years and find her appealing.
More importantly, I'm impressed with her credentials, not just as a cancer patient, but as someone with a background in psychology. To me, that's someone who has some specific tools to navigate the cancer conundrum, and I'm always curious, as an educator, of the ways that can help or hinder a cancer patient.
The reality is a lot of people have cancer. It's often heartbreaking to hear the many, many stories. But there are sometimes moments in the lives of cancer patients that are truly inspiring. Cancer patients often share some wonderful insight on how they survived their experiences, how they coped, and what worked when they needed care.
As far as celebrities go, I'm not all that impressed with fame and fortune. I don't think it's going to change any cancer patient's life to know that So-and-So went to Tahiti for a luxurious spa treatment. What I'm interested in is what gets people through those dark, lonely, terrifying times and helps them to feel involved in life again. It's that "putting one foot in front of the other" that will make a difference in someone else's life I care about.
The truth is I stink at political correctness. I'm not impressed with money or glamor. I'm skeptical and stubborn. I don't want to be a celebrity. I don't want to be a star. I want to bring a little sunshine into the lives of cancer patients and their caregivers. I want to give hope, real hope, that these are the moments in life that matter, that even when cancer strikes, it doesn't have to take over our lives. Sometimes it's as simple as saying, "For the next hour, I'm not going to think about cancer." Sometimes it's about turning your back on the scariest thing you've ever seen and thinking about other things.
The only time celebrity cancer can help cancer patients is when there are real tidbits of information, education, and inspiration that really have nothing to do with being famous and everything to do with spreading the word about sharing with cancer patients helpful ways to cope. Celebrities often have a public platform, and that platform can reach a lot of people.
As for me, I'm not looking to be an important cancer caregiver blogger. I'm looking for that caregiver at his or her wit's end, trying to figure out how to help a loved one. I've been there, done that, and have the tee shirt, and because it's now part of my experience, I want to make life better for those caregivers who come after me. That's my motivation, my focus, my voice.
You don't have to be famous to help a cancer caregiver or cancer patient. You can pass along your wisdom, hard-won though it may be. Never be afraid to reach out. Never be afraid to speak up. But most of all, never forget what it is like to be there with a cancer diagnosis, in yourself or someone you love. That's far more important than being famous. It's being human.
For more help with your cancer caregiving, visit The Practical Caregiver Guides
If there's one thing I've learned, you can be as famous as all get out and still have a disease like cancer. Cancer doesn't respect fame or fortune. It's that fortune that cancer sometimes goes after. It can be tough to handle the price of cancer treatment, especially when you don't have (enough) health insurance.
Ever since I wrote about Suzanne Whang's cancer, I've had people contacting me. They seem to be coming out of the woodwork. Some want the opportunity to use my blog to publicize their own efforts. I am wary of people looking to make a buck on the backs of cancer patients.
I am also wary of providing opportunities to raise funds for specific cancer patients. That's not really what I do.
When I write about a celebrity like Ms. Whang, I don't do it because I'm looking to be her next best bud. I don't do it to schmooze with the big fish. I do it because I have enjoyed her show on HGTV over the years and find her appealing.
More importantly, I'm impressed with her credentials, not just as a cancer patient, but as someone with a background in psychology. To me, that's someone who has some specific tools to navigate the cancer conundrum, and I'm always curious, as an educator, of the ways that can help or hinder a cancer patient.
The reality is a lot of people have cancer. It's often heartbreaking to hear the many, many stories. But there are sometimes moments in the lives of cancer patients that are truly inspiring. Cancer patients often share some wonderful insight on how they survived their experiences, how they coped, and what worked when they needed care.
As far as celebrities go, I'm not all that impressed with fame and fortune. I don't think it's going to change any cancer patient's life to know that So-and-So went to Tahiti for a luxurious spa treatment. What I'm interested in is what gets people through those dark, lonely, terrifying times and helps them to feel involved in life again. It's that "putting one foot in front of the other" that will make a difference in someone else's life I care about.
The truth is I stink at political correctness. I'm not impressed with money or glamor. I'm skeptical and stubborn. I don't want to be a celebrity. I don't want to be a star. I want to bring a little sunshine into the lives of cancer patients and their caregivers. I want to give hope, real hope, that these are the moments in life that matter, that even when cancer strikes, it doesn't have to take over our lives. Sometimes it's as simple as saying, "For the next hour, I'm not going to think about cancer." Sometimes it's about turning your back on the scariest thing you've ever seen and thinking about other things.
The only time celebrity cancer can help cancer patients is when there are real tidbits of information, education, and inspiration that really have nothing to do with being famous and everything to do with spreading the word about sharing with cancer patients helpful ways to cope. Celebrities often have a public platform, and that platform can reach a lot of people.
As for me, I'm not looking to be an important cancer caregiver blogger. I'm looking for that caregiver at his or her wit's end, trying to figure out how to help a loved one. I've been there, done that, and have the tee shirt, and because it's now part of my experience, I want to make life better for those caregivers who come after me. That's my motivation, my focus, my voice.
You don't have to be famous to help a cancer caregiver or cancer patient. You can pass along your wisdom, hard-won though it may be. Never be afraid to reach out. Never be afraid to speak up. But most of all, never forget what it is like to be there with a cancer diagnosis, in yourself or someone you love. That's far more important than being famous. It's being human.
For more help with your cancer caregiving, visit The Practical Caregiver Guides
Friday, July 20, 2012
Has Molecular-Level Cancer Testing Made a Difference for You?
Some time ago, I was approached by a GE Healthcare representative doing an outreach program on new molecular-level cancer testing. This approach tailors cancer treatment to the specific needs of each patient. The question is has this type of cancer treatment made a difference in the lives of patients?
Every cancer patient will have a unique experience, based on the type of cancer, its progression, other non-related health issues, and factors such as stress level. No two cancer patients will ever have identical experiences. I learned long ago that cancer patients can have similar experiences, and by identifying not just differences, but also similarities, cancer treatments can be improved.
Let's be honest. In this day and age of expensive health care treatments, there is little point in using technology that costs a fortune, but has no positive gain. That's wasteful spending. Kind of like throwing gold-flecked snake oil at a rattlesnake bite. If it doesn't fix things or improve things, there is no point in wasting time or money to continue.
I would love to hear from cancer patients and/or their caregivers. You're the folks on the front line in the fight against this disease. The question is this. Has molecular-level testing for your cancer or your loved one's cancer made a difference?
Some people new to cancer may read this and think the question is silly. Anyone who has managed cancer over the years, or cared for a loved one who has, will understand the difference. Right now, every single day, the battle against cancer advances. From doctors and researchers who have the disease, we have volunteers willing to use themselves as guinea pigs for new treatments and trials. Who better to understand how to fight the war than someone who understands what it feels like and why it feels that way? When we shift from a one-size-fits-all style to an understanding that there are differences and nuances inside each cancer, we begin to match patients with treatments that are far more effective and do far less harm. Instead of just forcing a patient to undergo a treatment doctors guess might work, research begins to show improvements.
As a blogger who follows cancer research and treatment trends, I have been optimistic in the last several months that there is some serious progress in the war on cancer. Why? Because I am beginning to see reports of untreatable cancers being treated successfully. Cancers that were diagnosed as Stage 4 are suddenly succumbing to new treatment options still in the testing stages.
Anyone who has ever had cancer or a loved one with cancer knows that very often it's the treatment that does more damage to the body than the actual cancer. Heart damage, tissue damage, and a myriad of other health issues can result. That's why I think molecular-level cancer testing is going to make a difference in the lives of people with the disease.
I know that researchers can test blood and tissue samples. I know they can examine patients, measure results, and even chart their progress. But what does it look like from a patient's point of view? What does it look like from a cancer caregiver's point of view?
I remember when my mother was being treated for lung cancer. She got frustrated at times with the physical limitations imposed upon her by the disease. But I also remember the hope that trickled forth when she began to regain some of her mobility, when she could once again go out and live her life. In her case, she gained some extra months, and she put a lot of effort into making them count. She wanted to live as long and as fully as she could. I often think that's something that cancer patients and their families share.
If you have a comment you would like to share with readers of my blog on molecular-level cancer testing, I encourage you to make it. Don't make it just for me. Don't make it just for GE Healthcare, one of the makers of the testing equipment. Make it for the cancer patients now in treatment and for those to come. Make it because you have a voice that wants to speak and you have insight into the situation. You and your love one may not realize it, but you have much to say to researchers about how cancer affects your life. Let them know what does and doesn't work for you. The more that is known about how cancer treatment affects your life, the better treatments can be better tailored to help, not hurt, patients.
If you would like more help with your cancer caregiving, please visit The Practical Caregiver Guides
Every cancer patient will have a unique experience, based on the type of cancer, its progression, other non-related health issues, and factors such as stress level. No two cancer patients will ever have identical experiences. I learned long ago that cancer patients can have similar experiences, and by identifying not just differences, but also similarities, cancer treatments can be improved.
Let's be honest. In this day and age of expensive health care treatments, there is little point in using technology that costs a fortune, but has no positive gain. That's wasteful spending. Kind of like throwing gold-flecked snake oil at a rattlesnake bite. If it doesn't fix things or improve things, there is no point in wasting time or money to continue.
I would love to hear from cancer patients and/or their caregivers. You're the folks on the front line in the fight against this disease. The question is this. Has molecular-level testing for your cancer or your loved one's cancer made a difference?
Some people new to cancer may read this and think the question is silly. Anyone who has managed cancer over the years, or cared for a loved one who has, will understand the difference. Right now, every single day, the battle against cancer advances. From doctors and researchers who have the disease, we have volunteers willing to use themselves as guinea pigs for new treatments and trials. Who better to understand how to fight the war than someone who understands what it feels like and why it feels that way? When we shift from a one-size-fits-all style to an understanding that there are differences and nuances inside each cancer, we begin to match patients with treatments that are far more effective and do far less harm. Instead of just forcing a patient to undergo a treatment doctors guess might work, research begins to show improvements.
As a blogger who follows cancer research and treatment trends, I have been optimistic in the last several months that there is some serious progress in the war on cancer. Why? Because I am beginning to see reports of untreatable cancers being treated successfully. Cancers that were diagnosed as Stage 4 are suddenly succumbing to new treatment options still in the testing stages.
Anyone who has ever had cancer or a loved one with cancer knows that very often it's the treatment that does more damage to the body than the actual cancer. Heart damage, tissue damage, and a myriad of other health issues can result. That's why I think molecular-level cancer testing is going to make a difference in the lives of people with the disease.
I know that researchers can test blood and tissue samples. I know they can examine patients, measure results, and even chart their progress. But what does it look like from a patient's point of view? What does it look like from a cancer caregiver's point of view?
I remember when my mother was being treated for lung cancer. She got frustrated at times with the physical limitations imposed upon her by the disease. But I also remember the hope that trickled forth when she began to regain some of her mobility, when she could once again go out and live her life. In her case, she gained some extra months, and she put a lot of effort into making them count. She wanted to live as long and as fully as she could. I often think that's something that cancer patients and their families share.
If you have a comment you would like to share with readers of my blog on molecular-level cancer testing, I encourage you to make it. Don't make it just for me. Don't make it just for GE Healthcare, one of the makers of the testing equipment. Make it for the cancer patients now in treatment and for those to come. Make it because you have a voice that wants to speak and you have insight into the situation. You and your love one may not realize it, but you have much to say to researchers about how cancer affects your life. Let them know what does and doesn't work for you. The more that is known about how cancer treatment affects your life, the better treatments can be better tailored to help, not hurt, patients.
If you would like more help with your cancer caregiving, please visit The Practical Caregiver Guides
Thursday, June 21, 2012
What Ever Happened to Suzanne Whang?
If you're a "House Hunters" fan from its early days, you probably remember Suzanne Whang, the host. Attractive, with a liquid silk voice, she was the friendly face of house tour voyeurs like me. Who doesn't love to have a peek at how the other half lives? Who doesn't want to guess which house will be "the one"? Part showcase for real estate, part study in human relations, I've enjoyed watching the folks who go shopping for property and I often wondered why Suzanne Whang stopped appearing.
It turns out Ms. Whang has been battling Stage 4 breast cancer. And I do mean battling. This lady has come out swinging and she's not planning to hold back her thoughts or emotions any time soon.
You may also know Suzanne from her other gigs, as a comedian and actor. She's done a lot of things over time. With a B.A. in psychology from Yale and a Masters in Cognitive Psychology from Brown, Ms. Whang brings a little something to the table that most cancer patients do not. So, what did all that knowledge about emotions do for her when she was diagnosed in 2006 with breast cancer? It gave her a chance to put a very human, sometimes touching, sometimes powerful, sometimes hilarious face to the disease.
I must admit that sometimes her blog is less than polite (www.suzannewhang.com) and she's been know to use an expletive or ten, but one of the posts I read struck me hard. Her advice to those of us without cancer? Don't give her advice about how to live with the disease. You know what? That's great advice. If you're a cancer caregiver, file that in your memory box. The next time your loved one snaps at you, ask yourself if you've strayed over that line. If you have, apologize. All the world's best intentions are not enough to get you out of that hot water.
Which raises another important subject -- are you claiming your loved one's cancer as your own? It's such a common mistake for cancer caregivers. It's hard not to get caught up in the cancer frenzy when it happens to someone you love. Let's face it. That cancer is going to change your life, too. It's easy to think you have a vested interest in the outcome. But you always need to remember that the body with the cancer is not yours. Your job is to provide comfort and care. Your role is to support. Your purpose is to be the help mate for the person with the cancer, so that he or she can survive cancer treatment and the disease as best as possible.
People with cancer often go through enormous emotional struggles as they manage their disease. It's not always a pretty experience, filled with pink ribbons and happy, smiling faces. Cancer is a teeth-grinding, fist-clenching experience. It's rarely predictable in all its aspects, and that means things can turn from bad to worse or from bad to good with little notice. Uncertainty reigns in the world of cancer, and people do the best they can with what they've got. It's very stressful.
Having a good cancer caregiver can help to relieve some of the stress of being a cancer survivor, but you will never be the savior of your loved one. You are on a journey together, facing a great unknown in a landscape full of darkness and light and everything in between. Err on the side of love. Be there, even when your own heart is breaking. Don't stop living with a loved one who has cancer. Kick cancer to the curb every once in a while. Think about something else as you force yourself to walk on the sunny side of the street. Think about life, laughter, and love. Feed the heart and soul with real nourishment -- starve the disease of the power to rule the roost.
For more help with your cancer caregiving, visit The Practical Caregiver Guides
It turns out Ms. Whang has been battling Stage 4 breast cancer. And I do mean battling. This lady has come out swinging and she's not planning to hold back her thoughts or emotions any time soon.
You may also know Suzanne from her other gigs, as a comedian and actor. She's done a lot of things over time. With a B.A. in psychology from Yale and a Masters in Cognitive Psychology from Brown, Ms. Whang brings a little something to the table that most cancer patients do not. So, what did all that knowledge about emotions do for her when she was diagnosed in 2006 with breast cancer? It gave her a chance to put a very human, sometimes touching, sometimes powerful, sometimes hilarious face to the disease.
I must admit that sometimes her blog is less than polite (www.suzannewhang.com) and she's been know to use an expletive or ten, but one of the posts I read struck me hard. Her advice to those of us without cancer? Don't give her advice about how to live with the disease. You know what? That's great advice. If you're a cancer caregiver, file that in your memory box. The next time your loved one snaps at you, ask yourself if you've strayed over that line. If you have, apologize. All the world's best intentions are not enough to get you out of that hot water.
Which raises another important subject -- are you claiming your loved one's cancer as your own? It's such a common mistake for cancer caregivers. It's hard not to get caught up in the cancer frenzy when it happens to someone you love. Let's face it. That cancer is going to change your life, too. It's easy to think you have a vested interest in the outcome. But you always need to remember that the body with the cancer is not yours. Your job is to provide comfort and care. Your role is to support. Your purpose is to be the help mate for the person with the cancer, so that he or she can survive cancer treatment and the disease as best as possible.
People with cancer often go through enormous emotional struggles as they manage their disease. It's not always a pretty experience, filled with pink ribbons and happy, smiling faces. Cancer is a teeth-grinding, fist-clenching experience. It's rarely predictable in all its aspects, and that means things can turn from bad to worse or from bad to good with little notice. Uncertainty reigns in the world of cancer, and people do the best they can with what they've got. It's very stressful.
Having a good cancer caregiver can help to relieve some of the stress of being a cancer survivor, but you will never be the savior of your loved one. You are on a journey together, facing a great unknown in a landscape full of darkness and light and everything in between. Err on the side of love. Be there, even when your own heart is breaking. Don't stop living with a loved one who has cancer. Kick cancer to the curb every once in a while. Think about something else as you force yourself to walk on the sunny side of the street. Think about life, laughter, and love. Feed the heart and soul with real nourishment -- starve the disease of the power to rule the roost.
For more help with your cancer caregiving, visit The Practical Caregiver Guides
Wednesday, May 16, 2012
Can Laser Interstitial Thermal Therapy Treat Inoperable Brain Cancer?
If you know anyone who has ever had brain cancer or cared for a brain cancer patient, you know this is a very tough situation. Depending on the type of tumor, the prognosis is often very pessimistic.
Lasers have been used to treat cancers since the seventies, but brain surgery is always risky. The idea of using heat to "cook" a tumor is not something people find easy to embrace. Is this changing with the AutoLITT system developed by Monteris, a Canadian company?
This technology is being used to treat gioblastomas and other difficult-to-treat brain cancers, especially helpful for high-risk patients. It's minimally invasive and pain-free. Many patients are up and walking less than 24 hours after treatment.
This new treatment for brain tumors was approved for use in 2009. There are reportedly almost a dozen hospitals in the country that currently offer the technology. Among them are the Smilow Cancer Center (Yale-New Haven), the Cleveland Clinic, University Hospitals Case Medical Center, and Barnes-Jewish Hospital.
Monteris just secured $9 million in new financing, offering hope to many cancer families that their loved ones may have access to the AutoLITT treatment. As more and more doctors are trained to use the system, patients will have more and better options, even when their brain tumors are untreatable by more conventional means.
If you or a loved one have a brain tumor that has not been successfully treated, AutoLITT may make a difference in cancer management. Some patients may gain only six months, while others gain years. It's not always easy to predict the success rate. Sometimes hanging in there means you live to fight another day. When the tide turns, it's important to be there and take advantage of the opportunities. The good times are what help you to ride out the bad. That's what cancer management is all about -- part hope, part patient advocacy, part persistence. Quality of life is always important, and the AutoLITT system seems to work with that concept.
If you feel that you or your loved one can benefit from treatment, don't hesitate to find out more. Tackle the issue head on and get the facts. It may or may not fit the needs of your family situation, but if it does, it's worth considering when all else has failed.
If you want more information about Monteris and its AutoLITT system, check out their website:
http://www.monteris.com/
------------------------------------------------------------------------
If you would like more help as a cancer caregiver, visit The Practical Caregiver Guides
If you would like a free copy of my ebooks in popular formats, visit my Smashwords pages:
The Practical Caregiver's Guide to Cancer Care: How to Help Someone You Love
The Practical Caregiver's Guide to Caregiver Support: How to Help Yourself
These are also available at Amazon, Baker and Taylor, Barnes and Noble, Diesel, Kobo, and Sony.
Lasers have been used to treat cancers since the seventies, but brain surgery is always risky. The idea of using heat to "cook" a tumor is not something people find easy to embrace. Is this changing with the AutoLITT system developed by Monteris, a Canadian company?
This technology is being used to treat gioblastomas and other difficult-to-treat brain cancers, especially helpful for high-risk patients. It's minimally invasive and pain-free. Many patients are up and walking less than 24 hours after treatment.
This new treatment for brain tumors was approved for use in 2009. There are reportedly almost a dozen hospitals in the country that currently offer the technology. Among them are the Smilow Cancer Center (Yale-New Haven), the Cleveland Clinic, University Hospitals Case Medical Center, and Barnes-Jewish Hospital.
Monteris just secured $9 million in new financing, offering hope to many cancer families that their loved ones may have access to the AutoLITT treatment. As more and more doctors are trained to use the system, patients will have more and better options, even when their brain tumors are untreatable by more conventional means.
If you or a loved one have a brain tumor that has not been successfully treated, AutoLITT may make a difference in cancer management. Some patients may gain only six months, while others gain years. It's not always easy to predict the success rate. Sometimes hanging in there means you live to fight another day. When the tide turns, it's important to be there and take advantage of the opportunities. The good times are what help you to ride out the bad. That's what cancer management is all about -- part hope, part patient advocacy, part persistence. Quality of life is always important, and the AutoLITT system seems to work with that concept.
If you feel that you or your loved one can benefit from treatment, don't hesitate to find out more. Tackle the issue head on and get the facts. It may or may not fit the needs of your family situation, but if it does, it's worth considering when all else has failed.
If you want more information about Monteris and its AutoLITT system, check out their website:
http://www.monteris.com/
------------------------------------------------------------------------
If you would like more help as a cancer caregiver, visit The Practical Caregiver Guides
If you would like a free copy of my ebooks in popular formats, visit my Smashwords pages:
The Practical Caregiver's Guide to Cancer Care: How to Help Someone You Love
The Practical Caregiver's Guide to Caregiver Support: How to Help Yourself
These are also available at Amazon, Baker and Taylor, Barnes and Noble, Diesel, Kobo, and Sony.
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