Sunday, February 24, 2013

Brain Tumors: Why Everyone Needs an Advocate

Okay, truth be told, this post is not on brain tumors.  Well it is, sort of, but it is about my own personal fear;  one of the reasons I do what I do—advocate for others.

In 2007 I had a bilateral mastectomy for breast cancer; I lost my mother to breast cancer; my sister was diagnosed with breast cancer.  All of this had a significant impact on my life—to say the least.  But, the most noteworthy experience that year was the severe and life-threatening asthma attack that my then five year old experienced.  I spent five nights in the PICU with him; had I not been persistent, I would not have had the pleasure of residing at New York Presbyterian Hospital.  While I realize this is not a coveted vacation destination, had I listened to the pediatrician I rushed my son to that first fateful day, likely I would not have him. 
My son had not been feeling well-- seemed nothing more than seasonal allergies; but for someone with a child who has asthma, I was on high alert.  We had gone to my parents beach house to enjoy the early fall weather, but during the night, I became aware that my son was not breathing right.  I gave him his nebulizer repeatedly with no relief.  In the morning I called our pediatrician.  She suggested I either come right in to see her or consult a local pedi.  Afraid to drive with a child in that condition, I took him to a local.  That pediatrician said he was fine and sent us on our way.  I called our pedi and told her that my gut says all is NOT fine.  She said she trusted me as mom—that my gut was powerful.  She said I should drive back NOW and in case things got worse, gave me the name of the only “on the way” hospital she would trust.  We made it to NYP and were seen immediately; our pedi had called ahead and they were ready for us.  Despite all efforts, breathing could not be stabilized; our son was admitted.  Turns out, he had a rare virus that was complicating matters; something that had gone undetected over the course of a few days there, but with the persistence of our team, was treated sucessfully.
 (Why, you ask didn’t we go to the local hospital?  Well, they do not have a pedes ward and the wait is extensive…far longer than the drive back to NYP—2 hours—btw, did you know that you can request ambulance transport to your hospital once you are stabilized locally?)

Fast forward a year.  Son gets in a minor bike accident-flew off his bike and hit a roadside boulder.  Bleeding profusely from his forehead (helmet slid up but did protect him from his direct hit back of the head from a neighboring boulder), we headed to the ER.  After hours there (yes, should have driven back to the city but the bleeding sent me local—big mistake), his energy was spent, and post adrenaline-- he was tired; we were told he was not responding and needed a CT scan—this “proclamation” was made not by a doctor, but by a PA.  Needless to say, our pedi was irate that we had subjected him to this radiation.  She explained that the hospital was not equipped to handle the unlikely negative results and that in my emotional state, took advantage of me and ordered the test.  My son was just tired from the ordeal and the late hour, simple as that.
Everyone needs an advocate; we are all far too emotional to be expected to stand up for ourselves at the time we most need to do it.  I wish I knew then what I know now; most CT scans are unnecessary and use of one must be rationally evaluated. 
Sometimes kids don't need a scan at all. They just need to be watched in a safe setting. One study showed that kids who went to an ER after suffering a minor head head injury were less likely to get a CT scan if they were simply observed in the ER for 4-6 hours -- and that observation period didn't compromise their safety “  or more likely….the next day.
It shows that 2 or 3 computed tomography (CT) scans of a child's head (child meaning under 15 years old in this case), can triple the risk of brain cancer. The total dose of radiation would be around 60mGy, while 5 to 10 scans giving a dose of some 50mGy or more, triples the risk of leukemia.
I have nightmares about the CT; we live in a radiation driven world….x-rays, scans, cellphones and other very dangerous technology we can no longer do without.  We need to be informed; we need to protect our children and oursleves. I was given a CT scan years ago after a minor car acciedent; many stitches to the head, but hardly in need of a scan.  I know better now; I have my boxing gloves on.
Health care crisis? You bet….cash strapped hospitals are ordering tests for many reasons; some necessary, some for profit and some for fear of lawsuits.  It all adds up to a huge expense and a huge health crisis for us all, not to mention for the nation.

So you see, like Helen Reddy says, I am wise, but at a price. “Not a novice any longer...I know too much to go back and pretend…oh yes, I am wise, but it's wisdom for the pain; yes I've paid the price but look how much I’ve gained…..” I am Woman-- the theme song for my radio show, and words I have lived by since my mother first purchased that “45” for me many moons ago. "I have heard it all only serves to make me more determined... makes me stronger." What I have learned I wish to share with you.
You need an advocate; don’t ever head to the ER without one and always take one to any medical consultations during which important decisions will be made. 

I will also add here to pay heed at the dentist’s office….panoramic x-rays and multiple x-rays dramatically increase your child’s risk for cancer.


~~If you don’t know your options, you don’t have any~~

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. She is also on the peer review board of the Natural Standard Database. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She mentors women who are coping with issues of well-being associated with breast cancer and its aftermath; she is passionate about helping others move forward into a life of health and wellbeing. Elyn has been featured on CNN Money, Talk About Health and more and has contributed to Breast Cancer Answers as well as written for the Pink Paper, Breast Cancer Wellness, Natural Healing-Natural Wellness, Integrative Oncology Essentials, and other publications and newsletters. She created and hosts the Survive and Live Well Radio Show. Elyn lives in New York with her husband and two young boys.

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