‘Tude

Not a cancer diagnosis goes by without someone saying, “Keep a positive attitude. That makes all the difference.”   Well… no.  Having health insurance, access to good doctors, a strong support system, the means for self-care, the ability to self-advocate, and getting a form of breast cancer that is treatable… THOSE make all the difference.

A woman who suffers debilitating side effects or dies, her attitude wasn’t positive enough?

I don’t really believe that most people mean to blame the victim. Yes, there are exploiters out to boost bank accounts and fragile egos, but for the most part, I think it’s a lack of clear thinking.  If we tell a woman to stay positive, where is she to go with her negative thoughts? I guarantee you they are there — dark and scary and ugly. It’s not the sum total of who she is, but the darkness is real and needs an outlet.

Also Read: Mother: A PoemSelf-limiting Beliefs

I’ve noticed a backlash just as silencing. If you don’t show appropriate levels of anger, you are a bubble-headed flake.

I deeply resent these culture wars and the way they distract us from the goal.  A discussion is good. Disparaging another, or even deciding what another person’s truth is, is not. Being human is alienating enough, let’s not add to it.  So in the interest of bridging, here are some of my most unpopular thoughts.

  • I had, and sometimes still have, bad days trying to cope with cancer and its fallout. But for the most part, my life is pretty flipping awesome.
  • Dealing with my cancer diagnosis forced me to strip my life down to the bones.  I like it better this way.  (please note: I get credit for that, not cancer.)
  • Post cancer, I live my life more deliberately and with more conscious appreciation.
  • I had a lot of pain during the last half of my radiation treatments. Other than that, my year of treatment carried very few side effects.
  • I lost some feeling under my right armpit from lymph node removal. Scar tissue can be painful, limiting my ability to do side planks in yoga. My pectoral muscle was compromised by mastectomy, so some arm exercises can be difficult.  Not impossible.  I have no other long-term physical side effects.
  • I don’t complain much about my diagnosis.  It’s no more and no less than a part of my reality.  I try to make an impact in the world and find excessive hand-wringing to be counter-productive.
  • I am an optimist, which means I believe in a universe that is predominately benevolent.  It doesn’t mean that I ignore the obvious downside of cancer, but it does keep me moving through life without falling off the cliff of despondency.
  • I don’t believe there is a “right” answer. The simple and complicated truth is that we need to be honest, we need to examine our own lives and make corrections as needed. As William Stafford says, “it is important that awake people be awake…the darkness around us is deep.”

More on lung cancer

On Monday I talked about the finger-pointing that goes along with lung cancer.  “Did s/he smoke?” is the first question that accompanies the news of a diagnosis.  A couple of days after Donna Summer died, her family released a statement saying that she didn’t smoke.  While that might have been partially connected to Summer’s idea that 9/11 caused her lung cancer, I hear a strong subtext of her not deserving her lung cancer, an effort to separate her from the smokers who die of lung cancer.

And of course, its opposite implication, that people who smoke deserve it.

I think this is an unintended consequence of the extremely effective awareness campaign linking smoking to lung cancer.  Thankfully, smoking rates are decreasing and yes, the incidence of lung cancer is following the same pattern.  But there are two truths that I want everyone to remember:

1952 Ad

 

  1. Lung cancer will not be eradicated by eliminating smoking.  As many as 24,000 American non-smokers die of lung cancer every year.
  2. Not every smoker gets lung cancer
I’d love it if the whole world quit smoking.  There’s nothing good about it.  But lung cancer, the disease itself, does not exist because of personal choice and is not a punishment for a modern lifestyle.  Yes, its rates have exploded since 1900 and can be reduced drastically, but the disease itself exists separately from known risk factors.  Lung cancer has been documented for hundreds of years.
I know that people use the disease as volleyball to forward their own agendas, often noble and right-minded agendas.  And it is true that there are significant known lifestyle risks. But we should not make the mistake of dismissing the disease entirely or considering a diagnosis any less tragic than breast, colon, bone, or any other cancer.
I also know that it goes beyond the blame game.  We all want to know how we can prevent a horrible disease with low survival rates like lung cancer.  Cancer is, undoubtedly, a bogeyman of a disease; one that exists to some degree outside of our control.  And that, my friends, is a scary truth.  Truth.
We can reduce our risk factors, we can improve our odds, but we can’t eliminate our risk altogether.
If you’re interested in learning more about the history of cancer, I highly recommend The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee.

New Army of Women Study

I did it.  You can too.  (if you qualify).  They are asking some really important questions about the long term psychological and physical effects of breast cancer and its treatment.

CALLING ALL FEMALES IN THE UNITED STATES WHO HAVE OR HAD BREAST CANCER

We need women in the United States who underwent surgical treatment for ANY type of breast cancer, including LCIS, DCIS, and Stage IV metastatic breast cancer, to take part in an online survey designed to explore the impact of breast cancer surgery on long-term health, quality of life, and satisfaction with care. A research team at Duke University will use the information collected from the survey to help guide surgical decision-making and optimize the long-term health of women newly diagnosed with breast cancer.

Please read on to learn more about what is involved and who can participate. And please don’t forget to tell any of your female friends or family members ANYWHERE IN THE US who are breast cancer survivors about this online study!

What’s the study about?

The overall goal of this study is to learn about the impact of breast-conserving surgery/lumpectomy, mastectomy, and mastectomy with breast reconstruction on a woman’s quality of life, general healthcare experience, and satisfaction with care and outcomes.

What’s involved?

If you’re interested in this study, you will be asked 5 questions to see if you meet the criteria to sign up for the study. If you are eligible to participate, you will receive a link to the study. If you sign up for the Evaluating Patient Reported Outcomes in Breast Cancer study, you will be contacted via email by the research team with instructions on completing the online screening form and surveys.
You will be asked to provide basic demographic information (such as age and ethnicity) and answer questions about your breast cancer diagnosis and treatment, overall health, problems or complaints related to breast cancer and its treatment, and the impact of cancer on your life. The full survey will take approximately 30-45 minutes to complete. You can complete the survey in more than one sitting; you can take breaks as needed.
Other Interesting Articles: Reliving History, Taking it all so personally

Who is conducting the study?

Dunya Atisha, MD, and Amy Abernethy, MD, at Duke University Medical Center, Durham, NC

Where?

Anywhere in the United States – this is an online study which you will be able to complete either on a desktop, laptop, or iPad-like technology.

Who can participate?

You can sign up for the Evaluating Patient Reported Outcomes in Breast Cancer study if you meet ALL of these MAIN criteria:
• You are a woman over the age of 18
• You have had a previous diagnosis OR a current diagnosis of breast cancer at any stage. This includes those who have had a previous OR current diagnosis of LCIS, DCIS, or Stage IV metastatic breast cancer.
• You had surgery to treat your breast cancer
• You have access to the Internet and are willing to complete an online survey
• You live in the United States

Pink Implosion

Pink Implosion

I’d be lying if I didn’t admit that I’m feeling a little schadenfreude about the implosion of the Susan G Komen Foundation.  And I truly believe it’s only a matter of when.  For me, the tipping point was Buckets for a Cure.  I attended my first Race for the Cure(TM) in 2008, just weeks after my diagnosis and days after my first chemotherapy. I found it tremendously helpful to see to many survivors there, a morale boost to indicate to me that I could indeed join their ranks.  The following year, I had a team and raised significant money.

After the bustle of treatment ended, I began reading more and started to become tentatively critical of the organization.  In April of 2010, this campaign pushed me over the edge. The What the Cluck campaign brought me to Breast Cancer Action, where I “came out” as a critic of the organization.  I found out I wasn’t alone and made some great friends all over the world.  We have collaborated on this issue, although it has at times seemed to be a Sisyphean Task.

Also Read: The Faces of ChildrenSometimes awareness is a good thing

I see now that we were drops in the ocean, and many connected to breast cancer began to coalesce.  But the Planned Parenthood flap was a tidal wave, and suddenly people were paying attention.  Every chance I got, I pointed people to Rachel Cheetham Moro’s seminal post examining the financials of Komen.  Finally, we were getting through.

And now the movie – Pink Ribbons Inc.  (see trailer below).  And today, an article from Salon that could have come from any one of us a few years ago.  This article brought to my attention by my sister-in-law (a Komen supporter whose mother died of breast cancer), was written by Mary Elizabeth Williams.

Reducing breast cancer – a complex disease with different manifestations – into a single entity for which there could be a single, magic bullet “cure” may sell T-shirts and mammogram machines. But it doesn’t begin to address the insidiously complicated nature of cancer or why it strikes women in the first place. Yet there’s money to be made in the notion of a “cure” – a slippery word you will be hard pressed to find anyone in the world of cancer treatment ever using. But “Race for the No Evidence of Disease” just doesn’t have the same easy ring to it. Nor does the expensive, unsexy environmental and social change required to identify and eliminate the roots of cancer.

I admit it.  I did a little cheer.  But the reality wasn’t far behind.  First of all, when Komen collapses, we need to have alternatives, and try like hell to hang on to the general public’s goodwill toward our cause, goodwill that Komen has exploited and squandered.  Second, and most bitterly, just like Komen’s rise didn’t cure breast cancer, neither will its demise.  The cruelest irony is that in the midst of the Komen collapse, Rachel, one of the leaders in critiquing the organization, was in a hospital dying.  We must never forget:  Bringing down Komen is NOT the goal.  Eradicating this devastating and sometimes fatal disease is the only acceptable outcome.

Sometimes awareness is a good thing

A few years ago, my friend Christine’s young son had a seizure.  Not long after, he had another.  If you have more than one seizure in a year you have epilepsy, a broad diagnosis defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  According to the same source, 3 million Americans and 50 million people worldwide have it.  According to a 2010 program on The Diane Rehm Show, more than half of those 3 million Americans are children.

The Charlie Foundation

The stress and chaos this diagnosis brought into her family is her story to tell, but as a bystander, I can confidently say they were significant.

There are so many variants with this diagnosis: Is the seizure in one part of the brain or does it vary?  How often do seizures occur?  What triggers them?  The protocol is to study the brain, to answer as many questions as possible, then try medications. Some medicines are known to work in some parts of the brain better than others, but getting the right one at the right dosage comes with some trial and error.

Meanwhile, kids and families are trying to live their lives.  One of the top seizure drugs, Keppra (levetiracetam), lists the following possible side effects.

Dizziness; drowsiness; irritability; sore throat; tiredness; weakness.

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abnormal thoughts; dark urine; decreased coordination; extreme dizziness, drowsiness, tiredness, or weakness; fever, chills, or persistent sore throat; hallucinations; memory loss; muscle or neck pain; new or worsening mental, mood, or behavior changes (eg, aggression, agitation, anger, anxiety, apathy, depression, hostility, irritability, panic attacks, restlessness); new or worsening seizures; pain, itching, or redness at the injection site; red, swollen, blistered, or peeling skin; suicidal thoughts or attempts; unusual bruising or bleeding; vision changes; yellowing of the skin or eyes.

CURE

It’s enough to make a parent, uh, nervous.  Grassroots organizations like CURE, founded by David Axelrod’s wife Susan, advocate for more effective and safer treatments.

Christine noticed some changes in her son after he started taking the first medication, but it was impossible to determine if it was caused by seizures, the medication, or simply growing up.  As Christine and her family analyzed the patterns of her son’s seizures, she noticed a few things, one being that a couple of seizures occurred after he consumed sugary drinks.

She did more research and came across The Charlie Foundation, whose mission is to educate and facilitate investigations into the use of a special diet to cure pediatric epilepsy.  Unlike some of the fuzzy math of diet and cancer, there is a long history of successfully using ketogenic diets to control childhood epilepsy.  The dietary method was abandoned in the 1920s when drugs were developed and how often it isn’t mentioned to parents.  The Charlie Foundation is working to change that, to let parents know that there is another option.  There is a percentage of kids for whom medications simply do not work, and often increasing doses and numbers of medications results in debilitating side effects.  Diet is an option that has changed the outcome for many, and The Charlie Foundation wants to spread the word.  In fact, in September they are sponsoring an international symposium in Chicago on dietary therapy.

Highly Recommended: The Faces of Children, Pink Implosion

Christine’s son has switched medications and made modest dietary changes.  His side effects have diminished as have his seizures.  He is doing well, growing up, and able actively participate in life.  In fact, he recently got together with some of his buddies and Dhani Jones, a former Cincinnati Bengal well-known for his philanthropy.  Jones started BowTie Cause.  Different styles of bow ties are designed and sold, each graphically linked with the mission of a non-profit organization.  Here is the background of the Bow Tie Cause.  (As an aside: watch the video.  It will rock your world.)

The bow ties are publicized, including on Fox Sports, and sold.  The money is designated for a specific organization.Behold the bow tie created by Christine’s son, Jack, and his friends.

The lightning bolts represent the electrical disruption in the brain that causes seizures.  The recipient charity is The Charlie Foundation.  This weekend, it was worn by Fox Sports’ Ken Rosenthal.
I am awed by the work of Jack and his friends — to take something that has been so scary and stressful and to make something good out of it.  Jack is the same age as my daughter, so I’ve shared this story with my children as a fabulous example of just how much a child can accomplish.  My daughter said, “WOW, how did he do that?”  My son, a couple years younger than Jack, told me that he looked for, and saw, the tie during the Yankees/Tigers game.
Much like breast cancer before my diagnosis, pediatric epilepsy never hit my radar until Jack was diagnosed and Christine shared some of their journey with me.  It’s a humbling reminder of all the things I don’t know, things that are just as life-altering as my breast cancer diagnosis was.
It’s a big world out there — people are dealing with all manner of issues in their lives.  And some of them are accomplishing great things despite and alongside these challenges.
(If you’d like to know how you can help, contact The Charlie Foundation or send me a message.  I can put you in touch with the right people.)