A Different Normal

Living In Remission

2013-01-15T14:46:28Z

By Betsy de Parry

“You have cancer.” Eleven years ago, I heard those frightening words. It was follicular non-Hodgkin lymphoma (FL), considered incurable. Most treatments only slow the disease but eventually, it returns and requires stronger drugs. Remission periods decrease with each subsequent treatment. Eventually, no options remain.

In my case, two back-to-back chemotherapy regimens failed even to slow my disease. Nine months after diagnosis, I settled into a tiny hospital room for a different kind of treatment that had just become available—radioimmunotherapy (RIT), which uses targeted radiation to kill lymphoma cells. While scientific studies show that RIT produces more complete responses and longer durations of response than any other treatment, it’s an option that is all too often ignored and frequently misunderstood.

However, six weeks after my RIT treatment, there was no evidence of disease. Officially, I was in remission, but remission, to me, meant that I was in limbo, somewhere between the worlds of sickness and health. Periodic scans would determine to which world I would return. I was forced to learn to live with uncertainty as my constant companion. And that’s easier said than done.

Every one of us would love a guarantee that cancer will never recur, but no such guarantee exists. As long as we’re alive, illness—of any kind—is a risk of life itself and death will always be a certainty.

Eventually, I concluded that what I do between now and then is far more important than worrying about the inevitable. And I accepted that cancer will always be part of my life. But it will never define it. I refuse to be paralyzed by what-if’s or to live in anticipation of the inevitable.

Instead, I learned to plan—to live—with purpose and priority alongside that which cancer forced me to accept: that we can’t always shape our own destinies nor are we always in control of our lives, much as we’d all like to believe. And quick, concrete answers and predictable outcomes aren’t always possible, much as we all want them.

But cancer also taught me that impossible is only a word that may or may not be relevant. And it gave me the freedom to savor the present like never before. After all, none of us knows what’s around the next bend in life, so why not enjoy the present? A chart stamped “cured” isn’t a prerequisite.

Years passed. Scans became less frequent. I remain healthy—and deeply grateful that RIT became available in the nick of time.

I’ve met others who took RIT in clinical trials as long as 17 years ago and who—like me—have been living healthy lives since. Are we cured? We’re certainly living like we are.

Betsy de Parry is the author of Adventures in Cancer Land and the author of Candid Cancer, a column for AnnArbor.com. She is a frequent speaker to healthcare and patient groups and a frequent participant in awareness, educational and advocacy efforts. She serves on the Society of Nuclear Medicine and Molecular Imaging’s Patient Advocate Advisory Board.

A Different Approach to Fitness

2013-01-10T17:49:33Z

By Maya Brown-Zimmerman

It’s resolution season, and everywhere I look it’s: “How to lose 10 lbs in 2 weeks!”, “Follow these 10 easy exercises for rock-hard abs!” “Start training for a 5K today: it’s easy!” The headlines offer simple solutions, but getting in shape when you have a chronic illness can be a little more complicated.

I have Marfan syndrome, and with that comes activity restrictions. I’m not supposed to get my heart rate over 120 bpm, play contact sports, or engage in any isometric activities (that’s where you’re holding your breath and straining, like in weight-lifting, push-ups, etc.). My doctors have told me a good rule of thumb is that if I can’t carry on a conversation while exercising, I’m doing it too hard. Well. That seems to rule out a whole lot of ways to exercise, doesn’t it? But, at the same time, people with Marfan and related connective tissue disorders are told that exercise and overall fitness is very important to keeping our hearts healthy and pain levels down. I’d imagine many of you have heard a similar edict, even though your diagnosis may be different from mine.

What I realized is that this forces me to rethink fitness. I acknowledge and accept that I am never going to have the tight abs or sculpted biceps I see on the models cluttering my Pinterest or Facebook feeds. However, I can adapt a definition of fitness to my own abilities.

For example, I can change the way I eat. Easy, simple meals and snacks don’t have to equal unhealthy foods. I can keep fruits and veggies handy, and I make good use of my crockpot. Toss some chicken and veggies in there and a few hours later, dinner is ready with no real work on my part! I also try to get moving. It’s easy to set up a little writing center for myself with everything I need within arms’ reach, but it’s better if I force myself to get up to get things, take the kids for a short walk, or park a few spaces farther than I would normally. Getting outdoors, even if it’s just to run some errands, brightens my mood and a better mood can decrease pain levels and encourage greater activity.

The important thing for me is not to compare myself with others and to be patient with myself. I set small goals to build up confidence and ability as well.

How do you approach fitness?

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.

Photo: Creatas

What Does Community Mean to You?

2012-12-18T20:37:51Z

By Sona Mehring

A community is more than just a group of people living in a particular area. A community is a group of people we lean on when times are tough; our friends, family, and neighbors who are there for us when we need love, support and encouragement.

We recently sent a request to CaringBridge users asking them to share the one word they would use to describe their community. Some of the most common responses were:

Loved
Connected
Supportive
Helpful
Blessed

You can see a word cloud we created with more responses on the CaringBridge Facebook page.

Think about the people in your life who make up your community. People who have helped you during your health journey with rides to the doctor, home-cooked meals, or just a shoulder to cry on. What word would you use to describe them?

Sona Mehring is the founder and CEO of CaringBridge, a nonprofit offering many ways for people to care for each other during any type of health event. CaringBridge offers personal Sites, a SupportPlanner and an online volunteer community, the Amplifier Hub. Follow Sona on Twitter – @gogosona.

Photo: Stockbyte

Holiday Conversations: Learning About Your Family’s Medical History

2012-12-14T14:53:57Z

By LaVarne A. Burton

LaVarne A. Burton is President and Chief Executive Officer of the American Kidney Fund (AKF), a nonprofit organization whose mission is to fight kidney disease through direct financial support to patients in need, health education, and prevention outreach. Ms. Burton has led AKF since October 2005, and today AKF is the nation’s leading source of charitable assistance to dialysis patients. Last year, 90,000 people—nearly 1 out of every 4 dialysis patients in the United States—received financial assistance from AKF for costs associated with kidney failure. Learn more at www.kidneyfund.org.

It’s that time of year again, and the holiday season is upon us. The tree has been decorated, the menorah is lit, and family get-togethers are just around the corner. While holiday reunions are a great way to bring the family together and reflect on the past year, they can also be plagued with awkward questions. Questions like: “Are you still single? When are you getting married? Did you get that job you were talking about?”

As you spend time with loved ones this holiday season, consider steering the conversation to a more important and productive topic: your family’s medical history. Connecting with family members during the holiday season and asking about their medical history can be a powerful way to identify and prevent chronic conditions that are prevalent in your family.

While awkward moments are part of life, asking about your family’s medical history doesn’t have to be. In fact, learning about a family illness early on can help you identify your risk factors and recognize early warning signs.

So as you’re catching up with relatives you haven’t seen in a while, why not ask them about their health and whether they have conditions that may run in the family? If you aren’t sure how to start the conversation, don’t worry. Below are a few questions to help get the conversation on family medical history going:

· Are there any chronic conditions that seem to run in our family?

· Do you have any of them?

· What are some of the symptoms you had?

Who knows, your family might just get excited about learning and sharing this information. Being aware of the chronic conditions that run in the family can be a big step toward improving your own health, and the health of your loved ones. For example, many people do not know that diabetes and high blood pressure can lead to chronic kidney disease (CKD), and as is the case with so many chronic illnesses, a leading risk factor for CKD is having a family history of the disease.

At the American Kidney Fund, we’re working to raise awareness about the preventable nature of CKD. If your family has a history of CKD, it is important to monitor your own kidney health through simple medical tests. CKD is just one example; the same can be said for so many of the chronic illnesses that run in families.

Remember, your family can be an important tool for understanding the future of your own health. When getting together with family this holiday season, don’t be afraid to ask questions about your family’s medical history.

How Do You Thank the Caregivers in Your Life?

2012-12-12T18:02:35Z

By Sona Mehring

At the end of the year, we usually take time to look back and reflect on what we’re thankful for. But I think any time of year is a good time to thank, support, educate, and advocate for the more than 65 million family caregivers in the United States.

The National Family Caregivers Association encourages family caregivers to take four steps every day to act on behalf of themselves and their loved ones, and to remove barriers to health and well being:

Believe in yourself.
Protect your health.
Reach out for help.
Speak up for your rights.

Many family caregivers are uncomfortable thinking of themselves as caregivers and don’t expect any kind of acknowledgement for their work. But I think it’s important to take the time to let them know that their work is appreciated.

How do you thank the caregivers in your life?

Photo: Pixland

Talking about Palliative Care

2012-11-27T19:29:10Z

By J. Donald Schumacher, PsyD

Don Schumacher has more than 30 years of experience in hospice and palliative care administration. Since 2002, he has served as the President and CEO of The National Hospice and Palliative Care Organization, the largest nonprofit leadership organization representing hospice and palliative care programs and professionals in the world. Learn more at www.nhpco.org.

“We wish we knew about hospice earlier.”

Hospice professionals hear these words from so many of those who receive their care. Healthcare professionals, family caregivers, and the patients themselves are often unsure about how and when to talk about the progression of an illness and what one’s future wishes and care preferences might be.

Hospice and palliative care professionals have long encouraged physicians to talk with people about their priorities and wishes from the point of diagnosis of a serious illness – yet it isn’t easy for healthcare professionals to begin these discussions. Too frequently patients and families find themselves in crisis before they begin to learn about options for care that can enhance quality of life; this includes options such as palliative care.

Most people have heard about hospice care but may not be familiar with palliative care. Hospice and palliative care both focus on helping a person be comfortable by addressing issues causing physical or emotional pain or suffering.

To palliate means to make comfortable by treating a person’s symptoms from an illness. The goals of palliative care are to improve the quality of a seriously ill person’s life and to support that person and their family caregivers during and after treatment. Palliative care is an important component of a seamless care path that many medical and nursing professionals are working towards.

Hospice focuses on relieving symptoms and supporting patients with a life expectancy of months, not years, and their families. Timely palliative care services can lead to a smoother transition to hospice care, when it becomes appropriate.

But when should you or your family consider palliative care? How do you raise the subject with your healthcare provider if she or he is uncomfortable with the subject?

Speak Up: What you need to know about your serious illness and palliative care is a campaign that can help patients and families who are living with a serious illness or condition to understand when and how to talk about palliative care. The on-line brochure includes questions that palliative care providers may ask you, questions to ask them, and where to find more information.

The National Hospice and Palliative Care Organization (NHPCO) also provides support through its Caring Connections website and free materials on hospice and palliative care, advance care planning, talking about serious and life-limiting illness, coping with pain, and grief.

It’s difficult to talk about palliative and hospice care. I know. But it is important to Speak Up so that your needs or the wishes of a loved one are known.

World Psoriasis Day: Addressing a Serious Global Health Challenge

2012-10-30T18:44:56Z

By Kathleen Gallant, MPA

More than 125 million individuals worldwide, including as many as 7.5 million Americans, live with psoriasis—a chronic, inflammatory, painful, and disabling autoimmune disease for which there is limited effective, safe, and affordable treatment options. There is no cure for psoriasis and it can affect anyone, anywhere around the world. Psoriasis knows no boundaries. I worry that too many people suffer needlessly from psoriasis due to incorrect or delayed diagnosis, inadequate treatment options, and insufficient access to care. People with psoriasis also suffer from stigma and a lack of understanding from the general public, who incorrectly fear psoriasis is contagious or “just a skin thing”. Because of this discrimination, people with psoriasis are more likely to suffer anxiety, low self-esteem, and depression.

For these reasons, I joined with millions of people around the world to celebrate World Psoriasis Day on Monday, October 29. Conceived by patients for patients, World Psoriasis Day is a global event that sets out to raise awareness and give voice to the 125 million people worldwide with psoriasis. World Psoriasis Day is an effort to help bring attention to the serious impact of psoriasis and give people with the disease the attention and consideration they deserve. Celebrating World Psoriasis Day helps to raise the profile of a condition that needs to be taken more seriously by national and international authorities. In honor of World Psoriasis Day, the U.S.-based National Psoriasis Foundation – the world’s largest psoriasis patient advocacy organization and charitable funder of psoriatic disease research – and a consortium of psoriasis patient organizations around the world made a commitment to address this serious global health challenge. Together, they engaged in efforts to:

secure federal funding for public policies and programs to achieve a cure;
make progress toward better treatments;
raise awareness; and
increase understanding about psoriasis.

The prevalence of psoriasis and its connection with many life-threating illnesses is a serious global health challenge. My goal is to have the World Health Organization recognize World Psoriasis Day.

Psoriasis puts people at greater-than-average risk for cardiovascular disease, diabetes, stroke, obesity, and cancer. Studies show that people with severe psoriasis are even more likely to suffer heart attacks and to die four years younger, on average, than those without the disease.
Psoriasis is a chronic disease that requires timely and appropriate medical care. Yet, treatments to effectively manage this disease and reduce its associated health risks are costly and difficult to obtain for many people. Out-of-pocket costs can be as much as $500 a month.
Further, the economic consequences of psoriasis, for both individuals and the health care system, are significant. In 2008, the annual cost of psoriasis in the U.S. was estimated at $11.25 billion. On average, people with psoriasis miss up to 26 days of work per year as a result of their illness.

It is time for government agencies around the world to recognize psoriasis for the debilitating disease it is and put it on the healthcare agenda today!

It is my hope that soon, a cure for psoriasis will be discovered. Until then, it is important to raise awareness around the globe and in our own country about the need for further research and a cure for psoriasis. Find out how you can get involved in World Psoriasis Day in the United States by visiting the National Psoriasis Foundation and its World Psoriasis Day website: www.worldofpsoriasis.com. To learn about World Psoriasis Day activities around the globe, visit the International Federation of Psoriasis Associations at www.worldpsoriasisday.com.

Kathleen Gallant, MPA, serves of the Board of Trustees of the National Psoriasis Foundation and is the Secretary of the Executive Committee of the International Federation of Psoriasis Associations (IFPA). Diagnosed with severe psoriasis at age 12 and disabling psoriatic arthritis at age 20, Ms. Gallant is a long-time advocate for psoriasis and psoriatic arthritis patients in her hometown of Pittsburgh, Pennsylvania; on Capitol Hill in Washington, D.C., and with the World Health Organization and the United Nations.

Photo: iStockphoto

Social Media and Your Health: How Much Do You Share?

2012-10-11T18:25:50Z

By Sona Mehring

There’s no doubt that social media has changed the way that people manage illness. Everyone approaches social media and social networks in their own way. Some join a lot of communities and share details about their health freely. Others like to share only with certain communities,. while some choose not to share at all, but instead search online conversations for information that might relate to their condition.

Melissa Hogan, a caregiver to her five-year-old son who suffers from a rare disease called Hunter Syndrome, is an example of someone who sees social networks as a tool to help her be an advocate, raise awareness, raise funds, and help families.

Melissa connected with other parents in an online forum, used CaringBridge to connect with family and friends, and has created Twitter, Facebook, and Pinterest pages about their experience in a clinical trial.

I’ll be sharing stories like Melissa’s at a health care social media conference this month, where I will be participating in a panel discussion on the benefits of social networks to patients, physicians and caregivers. I’ll be joined by distinguished panelists from Inspire, which builds online health and wellness communities for patients and caregivers and connects them to life science professionals, and EmpowerHER which provides women’s health and wellness content and is the largest online community of women discussing their health.

We are tasked with showing doctors how social networks can improve their patients’ quality of life and healing process, as well as how caregivers can benefit. We will also discuss what kind of information patients look for online and what doctors can learn from online patient communities.

So, as I prepare to share stories from the front lines of social media, I thought I’d ask the WebMD audience: How are you using social networks to talk about health? Do you have any advice that I should share with the doctors who will be attending this conference?

Photo: Stockbyte

Promoting Radiation Dose Optimization

2012-10-04T15:12:19Z

Frederic H. Fahey, DSc, FACR, FAAPM

President, Society of Nuclear Medicine and Molecular Imaging

Frederic H. Fahey, DSc, FACR, FAAPM, serves as the director of nuclear medicine physics and PET at Boston Children’s Hospital and is an associate professor of radiology at Harvard Medical School. He is currently president of the Society of Nuclear Medicine and Molecular Imaging. Fahey has written more than 70 journal articles and published 18 book chapters; he serves as an expert consultant for the International Atomic Energy Agency.

Whether you are living with heart disease, brain disease, cancer, or one of the many other chronic conditions, one thing for certain is that you have had more than your fair share of doctor’s appointments. Between diagnosis, treatment, and follow-up, it’s an ongoing journey in health care.

For many, part of the follow-up will include imaging of the body. In nuclear medicine and molecular imaging, small amounts of radioactive agents are administered to the patient to allow the physician to examine molecular processes within the body. These procedures, such as positron emission tomography (PET) and single photon emission computed tomography (SPECT) scans, are highly effective, safe, and painless diagnostic tools that present physicians with a detailed view of what’s going on inside an individual’s body at the cellular level. For more than 60 years, these studies have been used to evaluate practically all systems within the body, including the heart and brain, as well as to image many types of cancer.

I know that a lot of patients worry about the radiation exposure that can come from the various imaging procedures that are now a part of their medical life. When nuclear medicine and molecular imaging procedures are performed correctly on appropriate patients, however, the benefits of the procedure very far outweigh the potential risks.

Nuclear medicine and molecular imaging professionals are continually looking for ways to optimize the radiation dose so that the patient receives the smallest possible amount of radiopharmaceutical that will provide the appropriate diagnostic information for their physician. What’s more, if an appropriate procedure—one that can provide the physician with clinical information essential to the patient’s treatment—is not performed when necessary due to fear of radiation it can be detrimental to the patient.

The Society of Nuclear Medicine and Molecular Imaging believes that the right test with the right dose should be given to the right patient at the right time. The procedure that provides the most useful clinical information is the one that should be performed. With the knowledge gained from these nuclear medicine and molecular imaging scans, those with chronic conditions can make the best medical decisions.

If your doctor recommends a nuclear medicine or molecular imaging test, or any other imaging test that will utilize radiation, ask these three questions:

Will having the imaging test or procedure help improve my care?
Are there any alternative imaging tests that don’t utilize radiation?
Is the facility where my imaging test or procedure will be done accredited for quality and safety?

It’s also a good idea to keep track of your imaging history and share it with your physician when a new imaging test is recommended.

This blog is featured as part of the Society of Nuclear Medicine’s annual Nuclear Medicine Week (October 7-13, 2012). You can learn more about nuclear medicine and molecular imaging and how it can play a critical role in the detection, treatment and management of diseases at www.discoverMI.org.

Photo: iStockphoto

How Do You Define ‘Disability’?

2012-09-20T10:07:56Z

By Maya Brown-Zimmerman

What does it mean to be disabled? Is it different than having a disability? What does it mean to view ourselves as such, and is that different from how the world views us?

These questions came to mind after a recent online discussion with my Facebook friends about Oscar Pistorius, the Olympic athlete who recently became the first amputee to participate in both the Olympics and the Paralympics. It really got me thinking about disability and how that word might mean something different to each of us.

Personally, I consider myself to have a disability, but not to be disabled. In my mind, being disabled would mean that I have many disabilities and am unable to work. A disability can be “anything that…puts one at a disadvantage” (according to dictionary.com). Well, I have Marfan syndrome and that does put me at a disadvantage because I cannot participate in all the activities I’d like to and I’ve needed to use some accommodations in school.

I think there is a misconception that identifying as having a disability or being disabled means that you’ve given up, that you don’t see yourself as anything other than your illness or injury. This isn’t true for anyone I know, though! I believe that I can do almost anything I want to do. Having Marfan syndrome hasn’t stopped me from being a wife or mother, getting my Masters degree, volunteering, writing, or doing most other things. My body has a different set of rules and I have to respect those — so I might accomplish my goals in a different manner than others — but acknowledging my limits is not the same as giving up or giving in.

I am vocal about having a disability because I don’t want other people defining what having a disability means for me. Whether you’re active most days, or spend most of your time in bed, you have the right to define that for yourself.

So…is having a disability different from being disabled? What does that mean to you?

Photo: Photodisc