Cancer, Chronic Illness, and Online Communities

image from gypsy ribbons

Not too long ago, I did a post on BlogHers living, coping and blogging with chronic illness. At that time I hadn’t included BlogHers blogging with cancer, although I do agree that cancer is becoming more and more a chronic illness.

Cancer is in the news a lot these days. Elizabeth Edwards’ breast cancer, Fred Thompson’s lymphoma, Tony Snow’s prostate cancer are a few that made the headlines. But what’s most interesting about these reports is that they all are about cancer survivorship and not about cancer deaths. Cancer has become a chronic illness and in most cases the diagnosis is no longer a notice of imminent death. Rather it is the beginning of a long-term treatment process with remissions and exacerbations over many years. And with new treatments being developed with novel mechanisms of action, the odds are that this trend towards chronicity will continue. More cancers will become chronic illnesses and those that are chronic will take longer and longer to show their worst sides. — read full article

Coincidentally, it was just announced yesterday that Elizabeth Edwards will be be attending BlogHer ‘07 as part of our Closing Keynote on Saturday July 28th. — read more about this exciting turn of events

Many of our BlogHers are blogging about how they are living with the diagnosis of cancer. Below are a few that I came across while surfing through the BlogHer Health & Wellness Blogrolls.

Letting Go of Our Fear of Failure, and Walking Confidently Toward Our Dreams.

“Go Confidently In The Direction Of Your Dreams” — Henry David Thoreau

 

picture by © rjktlm

 

IS IT EVER TOO LATE TO FOLLOW OUR DREAMS? — by Catherine Morgan

With the pressures of daily life, do any of us really have time to think about our dreams? Do we even know what our dreams are? Kids know what their dreams are, just ask them…What do you want to be when you grow up? It is always such an easy answer for them. But once we do grow up, then what? Is is too late for us?

Check Out The Revolution Health Online Health Fair.

Check Out The Revolution Health Online Health Fair.

Last night I was invited (along with Rachel Walden from Women’s Health News, Pam from Well Soul, Christine Cupaiuolo of Our Bodies, Our Blog, and Denise from BlogHer and Flamingo House Happinings), to participate in a Revolution Health sponsored telephone conference with Dr. Sherry Marts of the Society for Women’s Health Research. Wow, try saying that ten times fast. You can listen to this one hour informative conference or read a transcript at Revolution Health.

For decades, there has been compelling evidence that biological sex differences are responsible for tremendous differences in the incidence, presentation, diagnosis and treatment of disease. This goes far beyond reproductive health, the areas of most obvious difference between the sexes. It affects cancer, heart disease, mental health, obesity – just about every major area of health. — read full post from Well Soul

This was a great opportunity for each of us to address questions about women’s health issues important to our readers.

I personally asked about how bloggers can convey information to their readers, such as on hormone therapy, when what is “right” seems to change constantly, and about priorities for research and how level or decreased funding at the National Institutes of Health will affect those priorities across the board. — read full post by Rachel at Women’s Health News

Some of the topics discussed with Dr. Sherry Marts were; medications prescribed to women that have not necessarily been tested on women, the confusion over hormone therapy, the connection between a woman’s menstrual cycle and chronic pain, government funding for women’s health, the HPV vaccine, and HIV medications for women. A lot of ground was covered under the direction of Cynthia Samuels, who did such a great job organizing this event for Revolution Health.

My first question was about women being prescribed medications that may not (probably not) have been tested ON women before they were approved. It wasn’t until like 1993 that the FDA mandated drugs be tested ON women. So those drugs you’re taking… well… you figure it out. read Denise’s full post

These are the questions I was interested in getting more insight on from Dr. Marts…

Important News For Women - Genetic Risk For Breast Cancer Can Also Come From Father’s Side.

From The Associated Press CHICAGO - A deadly gene’s path can hide in a family tree when a woman has few aunts and older sisters, making it appear that her breast cancer struck out of nowhere when it really came from Dad.A new study suggests thousands of young women with breast cancer — an estimated 8,000 a year in the U.S. — aren’t offered testing to identify faulty genes and clarify their medical decisions.

Guidelines used by insurance companies to decide coverage for genetic testing should change to reflect the findings, said study co-author Dr. Jeffrey Weitzel of City of Hope Cancer Center in Duarte, Calif. Testing can cost more than $3,000.

“Interestingly, it’s about Dad,” Weitzel said. Half of genetic breast cancers are inherited from a woman’s father, not her mother. But unless Dad has female relatives with breast cancer, the faulty gene may have been passed down silently, without causing cancer. (Men can get genetic breast cancer, too, but it’s not common.)

Weitzel said doctors often overlook the genetic risk from the father’s side of the family. — read full article

June Is Home Safety Month

Home Safety Month

June is Home Safety Month and the Home Safety Council provides a range of resources that will help you avoid home accidents. Before we get into the nitty gritty of home safety, it’s interesting to note that they have created a page and resources specifically for bloggers. They suggest topics for your blog this month because they know sharing your stories can sometimes be the best way to get the word out to others…READ FULL ARTICLE

RUMI - One day you will look back and laugh at yourself.

This is a great post from 1000 Petals, she always has such beautiful posts. If you haven’t checked out her site yet, you really should.

photo axinia

 

What if someone said to an embryo in the womb,

“Outside of your world of black nothing

is a miraculously ordered universe;

a vast Earth covered with tasty food;

mountains, oceans and plains,

fragrant orchards and fields full of crops;

a luminous sky beyond your reach,

with a sun, moonbeams, and uncountable stars;

and there are winds from south, north and west,

and gardens replete with sweet flowers

like a banquet at a wedding feast.

 

The wonders of this world are beyond description.

What are you doing living in a dark prison,

Drinking blood through that narrow tube?”

But the womb- world is all an embryo knows

And it would not be particularly impressed

By such amazing tales, saying dismissively:

“You’re crazy. That is all a deluded fantasy.”

 

 

One day you will look back and laugh at yourself.

You’ll say, “ I can’t believe I was so asleep!

How did I ever forget the truth?

How ridiculous to believe that sadness and sickness

Are anything other than bad dreams.”

RUMI (1207-1273)

Three Deaths Linked To Merck’s HPV Vaccine - Gardasil. Does the benefit really outweigh the risk?

Since my original post on the controversy surrounding the Gardasil vaccine, I have already added three updates. Recently I was made aware of new information released by the FDA regarding the more serious adverse reactions to this vaccine. Most upseting is the fact that at least three young girls have died within hours of receiving this controversial vaccine.

(Washington, DC) — Judicial Watch, the public interest group that investigates and prosecutes government corruption, today released documents obtained from the U.S. Food and Drug Administration (FDA) under the provisions of the Freedom of Information Act, detailing 1,637 reports of adverse reactions to the vaccination for human papillomavirus (HPV), Gardasil. Three deaths were related to the vaccine. One physician’s assistant reported that a female patient “died of a blood clot three hours after getting the Gardasil vaccine.” Two other reports, on girls 12 and 19, reported deaths relating to heart problems and/or blood clotting. — read full article

As of May 11, 2007, the 1,637 adverse vaccination reactions reported to the FDA via the Vaccine Adverse Event Reporting System (VAERS) included 371 serious reactions. Of the 42 women who received the vaccine while pregnant, 18 experienced side effects ranging from spontaneous abortion to fetal abnormities.

Side effects published by Merck & Co. warn the public about potential pain, fever, nausea, dizziness and itching after receiving the vaccine. Indeed, 77% of the adverse reactions reported are typical side effects to vaccinations. But other more serious side effects reported include paralysis, Bells Palsy, Guillain-Barre Syndrome, and seizures. — – read full article

What troubles me the most about this is; Parents understand that with all vaccines there will be a very small percent of people (in this case young girls) that will have an adverse reaction ending in death. The major difference is that vaccines like the MMR vaccines (given to our children to prevent Measles, Mumps, and Rubella) are essential in saving many lives from these highly contagious and often fatal diseases. So, the benefits of these vaccines most definitely outweigh the risks…(the small percent of serious adverse reactions with MMR vaccine is still only a tiny fraction of the amount of deaths we would see without this vaccine).

Unfortunately this is not the case with the HPV vaccine. I think if a parent thought that their daughter might die from a vaccine that has limited protection against a treatable (non life-threatening) virus, they might not see a benefit that outweighs that risk.

Is The Media Glorifying Drunk Driving With It’s Coverage of the Paris Hilton Story?

Paris Hilton Mania! Is the media coverage Glorifying Drunk Driving?

I think the whole “Paris Hilton” thing is so over dramatized and I’m really just sick of hearing about her. With that said…Even more than the excessive over-coverage of this story, I am appalled by the lack of (really NO) coverage of the problem of drunk driving in this country.

Furthermore, it actually seems to me that the media is “glamorizing” the issue with their coverage of Paris Hilton and other celebrities.

Women Blogging About Living With Chronic Illness

This is a post that I did for BlogHer last month on women and chronic illness, I think it is relevant here so I am posting it. If you are a women blogging about how you are living with chronic illness, I hope you will add your link to the many comments that are all already on this post at BlogHer.

BlogHers - Living, Coping, and Blogging with Chronic Illness

Millions of women suffer from chronic illness, and many of them courageously blog on how they are living and coping with their disease. Whether you suffer with chronic illness or you know someone who does, these BlogHers have much they can share with you.

Being sick is like being on a roller coaster — you can be up and hopeful one minute and down and doubtful the next. Your illness can take unexpected and unpredictable turns. One disease can dispose you to or give rise to another. This can be frightening as well as exasperating. Finding medication that works, being committed to following a good treatment plan and maintaining honest, direct and open communication with your healthcare providers takes time, energy and skill. But this is only part of the picture. Living with illness affects every part of your life and every significant relationship you have. — living with chronic illness