As I mentioned in my earlier post, I attended the HealtheVoices conference in Jersey City earlier this month. Janssen Pharmaceuticals paid my way, but my thoughts and reflections are my own.
There were over 60 passionate health bloggers at this conference. I spent time talking to with folks with HIV, to folks with various inflammatory bowel disorders, to folks with diabetes, to folks with rheumatoid arthritis, and to one man with prostate cancer. It was impossible to meet everyone there, but I enjoyed the interactions that I had.
One thing that stands out in my memory is that we all have a story. My story is not the center of the universe. Yes, it's the center of MY universe, but it's not the center at large. And that can be scary. Overwhelming. Downright frightening.
There are a lot of hurting people in this world. There are those who are consistently in and out of the hospital, dealing with life-long ailments. There are those who face pain every single day of the year. There are many who live with a stigma associated with their disease, adding emotional stress to physical problems. There are those who have had major surgery to remove important parts of their bodies. There are those who can have serious ramifications for not following the prescribed protocol for the disease inside their body which can result in catastrophic consequences.
While the diseases are different, we all had something in common. We all have the desire to wake up each day and to give forward to others via a blogging platform. Bloggers bridge the gap between doctors and pharmaceutical companies in that we are the face of those undergoing treatments and are willing to talk about those treatments. It's one thing for someone at a drug company to say "this medication may cause nausea" than it is for someone to go online and say, "this medicine made me puke for days." The personal voice gives reality to words on a page, especially when that voice is attached to a photo and to a link that may result in direct correspondence.
In the wake of recent health scandals, it's important to vet who you listen to. Look for consistency in what someone says and look for reports of being monitored by a medical team. While holistic approaches have their place in caring for the entire human body and psyche, if anyone claims that they are curing cancer by way of diet alone, that person is lying. (Remember, my blog aims to focus on evidence-based scientifically proven treatments.)
There are some wickedly talented bloggers out there. My approach to talking about my disease is more factual ... perhaps documentary in style ... while others take a more humorous approach. I stand in awe of their abilities to do so. It would be easy to be humbled into a point of despair when surrounded by such talent (I don't posses that much wit in my fingertips), but I know that my voice, while not the center of the universe, has its place.
Naturally, I gravitated towards other bloggers writing about breast cancer. While one of them was already a friend, I now consider myself fortunate to have three new friends as well.
Allow me to introduce you to Jen Campisano. She writes a heartfelt blog, Booby and the Beast. Diagnosed with Stage IV breast cancer at age 32 when her son was just five months old. Five years later, she is currently free of disease, although she remains on treatment to keep her that way. You will enjoy her blog quite a bit. She is as delightful in person as she is on paper.
Heather Lagemann is the author of Invasive Duct Tales. Heather is another young woman diagnosed with breast cancer shortly after the birth of her child. We are grateful that Heather is disease free and will complete her treatment for Her2+ breast cancer this summer. What is troublesome, though, is that even though she will be able to declare herself free of cancer, she will struggle through the aftermath of having early stage breast cancer and the ongoing fear of it returning. It's a whole different journey to walk that road and Heather does so with grace and humor.
Kathy-Ellen Kupps writes a column for Everyday Health, entitled Life With Breast Cancer. Written with honesty and a down-to-earth reality, Kathy and relates what living with breast cancer is like in an easy-to-understand way. She and I discovered that we have things in common ... including one of her oncologists being a lifelong friend of mine! Yes, it is a small world.
Ann Silberman writes Breast Cancer? But Doctor ... I Hate Pink! She's one of those who wields a humorous pen, writing "living with terminal cancer can be fun ... just not for very long." If you haven't had a chance to read her blog, you should take the time to do so. Ann, too, is currently disease free, although, she, too, remains on treatment.
Five breast cancer bloggers in the same place. All of us with a passion for research for metastatic disease. All of us brought together with a common goal ... to become better at being online health advocates in order to make a change in this world. Cancer brought us together, but life will keep us together.
Each voice is important. Each person has a story. Each voice matters. Being passionate about what is close to my heart doesn't lessen others' stories, but meeting others with similar stories keeps the isolation at bay.
While I am not the center of the universe, I am happy to be where I am. Life is good and I'm grateful.
There were over 60 passionate health bloggers at this conference. I spent time talking to with folks with HIV, to folks with various inflammatory bowel disorders, to folks with diabetes, to folks with rheumatoid arthritis, and to one man with prostate cancer. It was impossible to meet everyone there, but I enjoyed the interactions that I had.
One thing that stands out in my memory is that we all have a story. My story is not the center of the universe. Yes, it's the center of MY universe, but it's not the center at large. And that can be scary. Overwhelming. Downright frightening.
There are a lot of hurting people in this world. There are those who are consistently in and out of the hospital, dealing with life-long ailments. There are those who face pain every single day of the year. There are many who live with a stigma associated with their disease, adding emotional stress to physical problems. There are those who have had major surgery to remove important parts of their bodies. There are those who can have serious ramifications for not following the prescribed protocol for the disease inside their body which can result in catastrophic consequences.
While the diseases are different, we all had something in common. We all have the desire to wake up each day and to give forward to others via a blogging platform. Bloggers bridge the gap between doctors and pharmaceutical companies in that we are the face of those undergoing treatments and are willing to talk about those treatments. It's one thing for someone at a drug company to say "this medication may cause nausea" than it is for someone to go online and say, "this medicine made me puke for days." The personal voice gives reality to words on a page, especially when that voice is attached to a photo and to a link that may result in direct correspondence.
In the wake of recent health scandals, it's important to vet who you listen to. Look for consistency in what someone says and look for reports of being monitored by a medical team. While holistic approaches have their place in caring for the entire human body and psyche, if anyone claims that they are curing cancer by way of diet alone, that person is lying. (Remember, my blog aims to focus on evidence-based scientifically proven treatments.)
There are some wickedly talented bloggers out there. My approach to talking about my disease is more factual ... perhaps documentary in style ... while others take a more humorous approach. I stand in awe of their abilities to do so. It would be easy to be humbled into a point of despair when surrounded by such talent (I don't posses that much wit in my fingertips), but I know that my voice, while not the center of the universe, has its place.
Naturally, I gravitated towards other bloggers writing about breast cancer. While one of them was already a friend, I now consider myself fortunate to have three new friends as well.
Allow me to introduce you to Jen Campisano. She writes a heartfelt blog, Booby and the Beast. Diagnosed with Stage IV breast cancer at age 32 when her son was just five months old. Five years later, she is currently free of disease, although she remains on treatment to keep her that way. You will enjoy her blog quite a bit. She is as delightful in person as she is on paper.
Heather Lagemann is the author of Invasive Duct Tales. Heather is another young woman diagnosed with breast cancer shortly after the birth of her child. We are grateful that Heather is disease free and will complete her treatment for Her2+ breast cancer this summer. What is troublesome, though, is that even though she will be able to declare herself free of cancer, she will struggle through the aftermath of having early stage breast cancer and the ongoing fear of it returning. It's a whole different journey to walk that road and Heather does so with grace and humor.
Kathy-Ellen Kupps writes a column for Everyday Health, entitled Life With Breast Cancer. Written with honesty and a down-to-earth reality, Kathy and relates what living with breast cancer is like in an easy-to-understand way. She and I discovered that we have things in common ... including one of her oncologists being a lifelong friend of mine! Yes, it is a small world.
Ann Silberman writes Breast Cancer? But Doctor ... I Hate Pink! She's one of those who wields a humorous pen, writing "living with terminal cancer can be fun ... just not for very long." If you haven't had a chance to read her blog, you should take the time to do so. Ann, too, is currently disease free, although, she, too, remains on treatment.
Five breast cancer bloggers in the same place. All of us with a passion for research for metastatic disease. All of us brought together with a common goal ... to become better at being online health advocates in order to make a change in this world. Cancer brought us together, but life will keep us together.
Each voice is important. Each person has a story. Each voice matters. Being passionate about what is close to my heart doesn't lessen others' stories, but meeting others with similar stories keeps the isolation at bay.
While I am not the center of the universe, I am happy to be where I am. Life is good and I'm grateful.
From left to right: Kathy-Ellen Kupps, Jen Campisano, Vickie Young Wen, Ann Silberman, Heather Lagemann
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