Wednesday, October 23, 2013

Jaclyn Murphy: Real Sports with Bryant Gumbel Clip (HBO)

Frank Delford checks back in with pediatric brain tumor survivor Jaclyn Murphy, who inspired the Northwestern Women's Lacrosse magical 2005 season.

Thursday, October 10, 2013

Jump on the bandwagon....



It's October, you all know what that means:

Pink.

It is everywhere.

Ribbons galore.
Many breast cancer advocates hate October, as do I, because of the overabundance of  pink ribbonon everything.. Slap a pink ribbon on cat food. 
Komen.

Komen is despised by most cancer advocates, mainly because they create carcinogenic perfumes, put pink ribbons on green beans, toilet paper and even cat food.  It's friskies for the cure.

Wait don't call it "for the cure'  Komen sues smaller organizations who use "for the cure" because Susan G. Komen foundation for the cure is trademarked, and some people may confuse your small fundraiser to help the local community with the big machine of Komen. 

Recently I read that Dr. Susan Love a well respected cancer survivor and author and the Young Survival Coalition decided to team up with Komen to join forces to document the short- and long-term physical and emotional side effects of breast cancer treatments.

Hurra...

Wait,

WHAT?

Join forces with Komen, the big pink monster?

We should all be happy about this?

Now the finding out the side effects is a good thing, and I am surprised no one has done this yet?

Maybe I am wrong, but there must be some documentation somewhere..

So now the 3: Love, YSC and Komen are together, and advocates who railed against Komen are now applauding the collaboration.

Such a great thing!!

What?

Komen may have a lot of money to go to this cause, but at what cost?  Do we forget everything that Komen does (and does not do) for the cause?


I guess some advocates do, blindly forgetting the  perfume "Promise Me" that contains carcinogenics, that they blogged so hard against, now applaud Komen for joining forces with Dr. Susan Love and YSC.

I only have to say this:

Shame on everyone who complained and rallied so hard against Komen and now are toasting them for this groundbreaking amazing   HOW study! 

Be a part of history!  (it actually says that)

Wow you can jump on the bandwagon of Komen lovers and be a hypocrite!!

Do me a favor. 


It may make me unpopular, and I may lose a few friends along the way, but one thing is certain.

I will never support Komen.

I can sleep at night knowing that.

When I see a pink ribbon on toilet paper or yogurt, I wont sigh and say to myself, but they are doing this HOW study, and brush it off because of the greater good.

I will still be able to look myself in the mirror.

If you are against Pinkwashing how can you be praising Komen.

Do me a favor.

Stop looking through those pink colored glasses and see what is really going on.



Tuesday, June 18, 2013

Social Security Disability Benefits and Cancer




Informative guest post



If you or a loved one has been diagnosed with cancer, it is likely that you are most concerned with important details like treatment options and doctor appointments. While the first few days after receiving a diagnosis are often chaotic and emotional, it is important that you take the time to plan for the future.  Depending on the type and severity of your cancer, you may eventually find that you are unable to continue working. The resulting loss of income paired with expensive medical bills can be financially devastating.

Fortunately, the Social Security Administration (SSA) offers financial benefits to sick or disabled individuals who can no longer work. The following article will give you a general understanding of Social Security Disability (SSD) benefits and will help you prepare for the application process.

Social Security Disability Benefit Programs

The SSA governs two separate programs that distribute SSD benefits—SSDI and SSI. It is important that you research these two programs and understand the differences between them before you begin the application process.

• Social Security Disability Insurance (SSDI) - The SSDI program provides financial assistance to disabled workers and their families. Eligibility for SSDI is determined by an applicant’s employment history and the amount of Social Security taxes they’ve paid. To make this easier to understand, the SSA assigns a specific amount of “work credits” to each quarter an individual earns income and pays taxes. To qualify for SSDI, applicants must have accumulated a certain amount of work credits. Learn more about the specific SSDI requirements, here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi.

• Supplemental Security Income (SSI) - The SSI program offers benefits to elderly or disabled individuals who earn very little income. To qualify for SSI, applicants are not allowed to exceed very strict financial limits. SSI does not consider an applicant’s work history. Therefore, SSI is often a good fit for children or other individuals who haven’t had the chance to earn work credits. Learn more about SSI, here: http://www.disability-benefits-help.org/ssi/qualify-for-ssi.

To qualify for either program, applicants must meet the SSA’s definition of disability. The SSA considers a person disabled if they meet the following criteria:

• Your condition makes it impossible for you to perform substantial gainful activity (SGA). SGA is any job in which you earn more than $1,040 a month.

• Your condition has lasted or is expected to last at least one year or result in death.


Medical Disability Requirements

To gauge the severity of your cancer, the SSA will evaluate your condition based on the standards set in their guidebook of disabling conditions, known as the blue book. The blue book lists potentially disablingconditions along with specific medical criteria that an applicant must meet in order to qualify. Because cancer is a complex disease and affects everyone differently, the SSA typically evaluates cancer claims on a case-by-case basis.  This means that the blue book criteria will differ based on the type of cancer that you have.

You can find all of the blue book listings on the SSA’s website: http://www.socialsecurity.gov/disability/professionals/bluebook/AdultListings.htm.

If you find that you do not meet the criteria of a blue book listing, you may still be able to qualify under a medical vocational allowance. Essentially, this means, that the SSA has determined that your condition keeps you from working regardless of the fact that you don’t meet the blue book requirements. In addition to your condition and symptoms, the SSA will also look at your age, work background, and level of education.

Compassionate Allowance Listings

It take anywhere from several months to over a year to receive a decision on your initial disability claim. The SSA realizes that individuals with severely debilitating conditions may not be able to wait that long to receive benefits. For this reason, the SSA allows individuals with certain conditions to be approved for benefits in as little as ten days. This is called compassionate allowance processing. You can view the compassionate allowance listings here: http://www.socialsecurity.gov/compassionateallowances/


Please note that you do not have to fill out additional paperwork or request compassionate allowanceprocessing. The SSA will evaluate your claim, and if it meets compassionate allowance standards, they will expedite it accordingly.



Beginning the Application Process

One of the most important parts of applying for SSD benefits is providing thorough documentation of  your cancer. The SSA will use this documentation as proof of your illness. Without it, you will not be approved. Medical documentation should include records of your diagnosis, medical lab test results, diagnostic imaging, history of hospitalizations, treatments you’ve received and how you responded, as well as an official statement from each of your doctors.  You should also collect copies of personal financial records and documentation of your work history.  Once you are prepared to begin the application procedures, you can do so online at the SSA’s website or in person at your local Social Security office.  You should keep in mind that the SSD application process is, by no means, easy.  You may find it to be overwhelming and discouraging at times. It is important that you remain persistent in your efforts—even if your initial claim is denied.  If you find yourself in that situation, you have the right to appeal the SSA’s decision.



For more information about the appeal process, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

Thursday, May 2, 2013

"SELF"ish RANT


I read a lot of articles and information online, and usually things don't get my ire up enough for me to blog about it but a recent article in SELF magazine really upset me.  It is an article about thyroid cancer, the author quotes Louise Davies, M.D., a researcher with the VA Outcomes Group in White River Junction, Vermont. "Calling thyroid cancer 'cancer' makes it sound like it will kill you, when the truth is, not all cancers matter."

Wait.

WHAT?

Right. so what this article is saying is don't worry about it.  Thyroid cancer isn't really cancer.  If you are diagnosed.  Meh.
I am not a doctor, I have no medical degree.  I give people advice and tell them I am not a medical expert, I went to college for television production, and all my experience I have is from being a cancer patient/advocate.  If you want to take my advice, that is up to you.

But to be an MD and say not all cancers matter is perhaps the most irresponsible statement I have read.

Calling thryoid cancer "cancer" makes it sound like it will kill you.....

That's because it CAN...

It's called cancer for a reason.

I am wondering if Louise Davis, M.D. would give that advice to her daughter, mother, best friend or sister, its not really cancer "cancer"  it's thryoid cancer.

What?

Louise Davis doesn't have to live with the consequences of not treating the non cancer cancer.  The patient does.

Hey Louise, how about this analogy.  If your brakes are squishy, and you push them and they go almost to the floor, when you take them into the mechanic to fix them and he says they are fine, you can drive home.  He doesn't have to drive your car, take your kids to school, live your life.

Tell not all cancers matter to any of my cancer survivor friends, some of whom are thyroid cancer survivors.  We have all seen good friends of ours die from cancer,   and we would never say, well he died from cancer, but not CANCER cancer.  It doesn't matter.

YES IT FUCKING DOES MATTER.

It is reckless to give blanket medical advice like that when everyone's cancer is different.  Yes thryoid cancer is treatable, but so are many other cancers, oh its only Leukemia, its not LEUKEMIA leukemia, it doesn't matter.
 
Every cancer matters.

Every survivor matters. 
 
I would like Louise Davis to explain herself to a roomful of my thryoid cancer survivor friends.

Tell them that it doesn't matter.

Yeah, let me know how that goes...



Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes and on the Podcasts app on your iphone


Wednesday, April 24, 2013

'Cause I love that dirty water....

Photo above by Jessica Rinaldi/Reuters

Boston.  Everyone's city. At least after the Boston Marathon bombings on April 15th.

I went to college in Boston.  Spent 4 amazing years there.

I grew up in a small town in New Hampshire.  Wasn't the sports nut that I am now, but we would watch the Celtics (back when Larry Bird was THE man), we would all watch the Pats on Sunday.  God they were terrible, but you would keep watching them every Sunday, no matter how much they disappointed you.  It's the Patriots, its YOUR team.

Growing up where the country was started was a pretty amazing experience.  I didn't realize it at the time, but I realize it now, how special it is.  Having all that history, all that culture.  Everything started where you live. You don't think about it when you are a kid.  But when you are older, you realize growing up where our country started, in one of the 13 colonies, is pretty cool.

Ok I grew up in New Hampshire, 2 hours away from Boston. 

I didn't really care about high school.  Looking back I should have done better.  I am smart, but in school people compare you to your siblings, and my brother, 1 grade ahead of me, was class valedictorian.  So I would inevitably get compared to him.  So why should I try if I was always going to be compared to.  Not really a fair thing for teachers to do to a kid.

So I graduated somewhere in the middle of the pack.

Television always interested me so I applied to Newbury Junior College (It's now a 4 year college)  I figured I would get an associates degree and if I liked what I was doing then I would go on to Emerson.

College in Boston.  Our dorms were in Back Bay, on Comm ave, just 5 blocks from the Common. 

I loved going to school there. Finally, in a place full of misfits, I fit in.  It was great.

Patriot's Day.

I heard on the radio there were explosions near the finish line.

I wasn't able to get to a TV until about an hour later and then I saw the images, the videos.

The horror.

Terrorists had placed improvised explosive devices (IEDs) in the crowd at the finish line.  Several hundred people were injured.  3 people would eventually die from their injuries.

The first marathon I experienced was in 1989.  I still remember the hallway of our dorm had boston marathon signs that we had taken.  Signs that were discarded after the marathon.

The marathon was hot that year,  I remember because my friend Sabrina and I walked around and being around all those people and the heat made it even more hot.  It was a fun experience, but I am not a runner, and it is something you should experience at least once, because Boston is THE marathon to run in.

The terrorists took a lot that day, from the people of Boston, and from me they took a little bit of the innocence of the city from me. 
 
It depressed me.  I know the tragedy of it all depressed a lot of people, I get that, but when you are so familiar with a place, when, even though you haven't been there for almost 20 years you are still part of the city.  I think every past college student who studied in Boston knows what I am talking about.  You picture taking money out of that ATM,taking photos of the John Hancock building, walking home buzzed from a party with your roommate. 

I felt incredibly lost and helpless.

4 days.

That's all it took.

4 days to find the people responsible.  Ironically in my college roomate's hometown.  Crazy how small this world is.

I remember when they caught him I felt as if a weight had been lifted off of my shoulders.

I was sad for a city that I hadn't been to in almost 20 years, a city that I have so many fond memories of, I city that will always have a place in my heart.

Big Papi said it in a speech at Fenway:   This is our Fucking city....

Yeah it still is.

It's a Boston thing, you probably wouldn't understand.


Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes, stitcher radio, Tune In radio, Roku and on the Podcasts app on your iphone

Tuesday, March 19, 2013

That championship season



There is always a lot I can write about how hockey has helped me through treatment and beyond.  It is a recurring theme in my blog.  This season has been no different.  This season my captain Stacey and I were able to secure a sponsor for a team in our league.  We got the only hockey store in the area, run by a former LA King, to sponsor our team.  Not bad for the only team with 2 women as captain and assistant captain.

The cool thing about being a captain is that you can draft your team. We were able to see who we wanted during the fall season, to draft for the winter cup run.  My captain and I picked players based not only upon skill level but on personality.  Many of the players we only knew in passing, not anything about them but what we saw on the ice and heard about from other players.

Now I am not a great player.  I am a good player, alright I am an ok player, I am not afraid to go after the puck and I know where I am supposed to be, I am not the fastest, or the slowest, and I am not afraid to go in the corners against bigger players and go after the puck (size never bothered me when I play hockey, just another player.)

So this winter season, if you look at the final standings for the season we played 10 games, won 3, lost 6, tied 1.  Not the last out of 6 teams, but it was close, we could have been.

Our cup run was short lived, we won 1 game, lost one in overtime, got shutout in the last.

So you are wondering how can it be a championship season?

When we lost?

When we didn't make it to the finals or get our name on the cup 

like I did the first season I played.

If you envision a team, that has all the right elements, player wise, personality wise, (hat didn't obviously reflect our talent of our team,) then this was it.  There were a few players that Stacey and I had played with before, but none of these people all together.

There is something about playing on a team.  Being a part of something that isn't just you.  The team wins, you win, the team loses, you lose.  It is that simple.

What made this team so special?  Everything about it was the embodiment of team.  We all celebrated our goals, our assists, our victories, our defeats.  Most of the teams I have played on some players do that, but not all of them.   When you watch a professional hockey team, that is what they do, celebrate as a team.

I played on a line with 2 players whose skill level was above mine.  I don't skate as fast as they do, nor do I score as much as they did, but they both made me a better player, something, while perhaps insignificant to them, to me I am forever grateful.

As a cancer survivor, when you go through treatment you celebrate the small victories, because with them there can come huge defeats.

I have played hockey in California and Michigan, played on several teams, with different people, and win, lose or tie this has been the best hockey season I have ever experienced.


Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes and on the Podcasts app on your iphone




Wednesday, February 13, 2013

Maintaining a Healthy Weight to Lower Your Cancer Risk





Another guest blogger, enjoy!

There are many reasons for maintaining a healthy weight, and they're not just related to looking good.  Keeping your weight within a healthy range can help boost your energy level and lead to better sleep.  In addition, it helps prevent all sorts of health problems, including heart disease, diabetes, and even cancer.

How Does Weight Relate to Cancer?

Numerous studies have investigated the link between body weight and cancer, and the results show that obesity is yet another risk factor that can increase your chance of developing many types of cancer.  Types of cancer that are affected by obesity include esophagus, breast, kidney, thyroid, pancreas, colon, rectum, endrometrium, and gallbladder,  Potential reasons for increased risk include chronic low-level inflammation, the effects of fat cells on other types of cell growth, and the excess production of hormones, including estrogen and adipokenes, that may stimulate cancer growth.

What is a Healthy Weight for Me?

Standards for a healthy weight revolve around your BMI or body mass index.  This number is based on your height and weight, and you can easily calculate it with a BMI calculator. For adults, a healthy BMI is between 18.5 and 24.9.  For people who are 6 feet tall, this is a weight range of 137 to 183 pounds.  A BMI between 25 and 29.9 is overweight and 30 or greater is obese.

Ways to Maintain a Healthy Weight

1.  Eat a balanced diet that includes plenty of low-starch vegetables, whole grains, fruits, and lean proteins.  Ensure that your calorie intake for each day is equivalent to your caloric needs,  which depend on your age, height, weight, gender, and activity level.

2. Limit your consumption of foods high in fat and sugars which both contribute to weight gain.  Try cooking techniques like sauteeing or grilling, which use less fat than frying.  Drink water or milk instead of sweetened beverages.

3.. Exercise regularly, ideally getting at least 150 minutes of moderate physical activity each week to maintain your weight, or more to lose weight.  A good target is 30 minutes per day, 5 days per week.  Some activites you could try include brisk walking, jogging, cycling, swimming, and aerobics.

4.  Meet regularly with others who want to maintain a healthy weight to discuss your techniques and progress.  The support from others can help motivate you to meet your goals

About the Author:  Natural Horizons Wellness Centers offers an array of alternative cancer treatments for conditions including lymphoma, myeloma, leukemia, carcinoma, breast cancer and more.