Archive for the 'Spirituality' Category

Unexpected Blessings

This is not a typical blog post. Most often, as I sit down to my computer, I’m thinking about some piece of news, or a conversation I’ve had, or a question someone has sent me to help them navigate their care.

Instead, as I sit down at my computer on this Thanksgiving morning 2007, I’m so very grateful for the many blessings in my life. My own health, the health and happiness of my loved ones. Those are always at the top of the list.

What has changed in the past several years, though, is perhaps the one thing I am most grateful for. In 2004, when I was told I had cancer and would likely be dead within months, I could never have imagined what a gift that could be. A blessing because the doctors were wrong, of course. But an even bigger blessing was learning just why I was put on this earth. That’s a gift most of us never receive in an entire lifetime.

That gift has blossomed into a career — the opportunity to learn more about navigating American healthcare, and share my learnings with my readers and listeners. The opportunity to meet knowledgeable and helpful people including medical professionals, media professionals and most certainly my fellow advocates — those who work on behalf of all of us to make healthcare safer and fairer.

You’ve heard about the “attitude of gratitude” — well — that’s so very me. It’s very much about moving from blamer to fixer, and realizing that sometimes our biggest gifts in life are the people and events that cause us the most difficultly, then provide us with the most opportunity. They are truly unexpected blessings.

I wish you and yours a most blessed Thanksgiving today. And if you aren’t American, then I wish you the opportunity to consider your own blessings on any day you choose. Blessings know no geographic boundaries.

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Cancer and Bravery: Those Strong TV Women

I remember hearing in 1976 about Betty Rollin, a TV reporter who had written a book about her experience with breast cancer called, First, You Cry.

I was in my 20s, and a new mom. In fact, my daughter Becca turns 31 today and I remember watching book-tour type interviews with Ms. Rollin as I rocked Becca to sleep. (Happy Birthday, Becca!)

Then 8-10 or so years ago we heard about Katie Couric’s husband — dead at 40 something of colon cancer. So what does Katie do? She has a colonoscopy with TV cameras rolling so others will see that it’s not so bad — but it certainly does so much good.

Fast forward all these years — and news in the past few months about both Robin Roberts, ABC’s Good Morning America host, and now Hoda Kotbe from NBC — breast cancer, and sharing their stories to help other women.

How powerful! These four brave, strong women, sharing their experiences so others can learn, and eventually, be saved from the horrors that later stages of cancer can bring.  They share the medical, the emotional and everything in between.   And there are others, people in the limelight who use their own experiences to help others.

I feel a bit of a kinship. My disease may not have turned out to be cancer, but my reaction has been the same. To share, in hopes that others won’t suffer.

The strength of women astounds me sometimes. It’s patientude for sure. I’m proud to be counted among the strong ones.

And my very best thoughts and wishes go out to Robin, Hoda, and all you women who are out there, today, using your incredible strength to carry you through the emotions and treatment, while you hold the hands of others who must follow in your footsteps.

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Dr. Pausch on Life – and PTSD

(A Note: I’ve actually started this post a few times, but then I have to grab another tissue, wipe away my tears, and start again…. this is the face of post traumatic stress…. so bear with me, please….)

At least a dozen people have sent me links to what ABC called “A Lecture of a Lifetime.”

Some background: Dr. Randy Pausch, a computer science professor at Carnegie Mellon University, has been diagnosed with pancreatic cancer and has only a few months to live. He has proof of his disease in the images of the tumors in his pancreas. Of course, it was important for me to see those — because his prognosis is the same one I received — just a few months to live.

Diane Sawyer did a wonderful interview with Dr. Pausch on Good Morning America yesterday, which you can see here.

Or you can watch the entire lecture here. I am not able to do that. I just can’t. That’s the post traumatic stress.

The big difference, of course, is that I learned my diagnosis was wrong. I was told I had just a few months to live (life turns 180 degrees) and then figured out that I wasn’t go to die at all — at least not then (another 180 degrees, back to where I started.) Listening to Dr. Pausch just brings up all those old fears and feelings and — melt down time.

I hope you will take at least the 8-9 minutes to hear what Dr. Pausch has to say in the Sawyer interview. It is brilliantly simple, and simply brilliant.

In many ways, having had the same prognosis-related experience, I count myself as one of the lucky ones. NOT because I was misdiagnosed and learned I was really just fine, but because like Dr. Pausch, I was given the rare opportunity to examine my own life, assess what I did and didn’t like about it, and make the changes needed to be all I want to be.

YOU can make your own luck in this way. If you are one of those fortunate people who can learn from other’s experiences, then listen to Dr. Pausch, and follow his suggestions.

One of them is a long-time favorite of mine: Luck is the point at which preparation meets opportunity. Be prepared for the opportunities in your life. Keep an eye open for them. Take advantage of them. Substitute “someday” for today.

Remember — everything, EVERYTHING, happens for a reason. You are reading this post for a reason.

God bless you and your family, Randy Pausch. You have made a difference in this world you will leave behind.

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Blamers and Fixers: Which One Are You?

You’d be amazed at the email and postal mail I receive from patients who have been hurt by the medical system. Perhaps not at the numbers — I receive a handful each week. Instead, you’d be amazed at what they ask me to do.

I’ve put the people who write to me about medical errors they have suffered into two categories: The Blamers and the Fixers

The Blamers are those who livid-angry, and they ask me to do things that will help distribute their anger further. They want me to help them write letters to doctors or hospitals or others who have wronged them. They want me to help yank a doctor’s license to practice, or help them sue a provider, or participate in whatever form of punishment they believe is appropriate. In one case, the Blamer was a whistle-blower, and she wanted me to begin publishing her work on this blog or in my columns to bring attention to the plight of whistle-blowers (because no one is paying attention to her own blog.) Another lost both parents to hospital infections. In another case, a man wanted me to publicize his story about the towel that was left in him during surgery because the lawsuit dollars being proposed just weren’t big enough.

Their anger is just so palpable. And I get it! I was there! After my misdiagnosis, I talked to anyone who wanted to listen in hopes it would somehow diffuse my anger.

It didn’t.

My guess is that in many cases, these are people who have been so wronged by the system, that they are grasping desperately for something to fix the wrong. Of course, it can rarely be fixed. Apologies can’t fix the hurt, frustration and pain. They think that punishing the wrong-doers will fix it.

It won’t.

The Fixers are a step beyond. Fixers are people who have been hurt by the system, and have turned that bad experience into something else more positive.

Among my advocate-colleagues, you’d be amazed at how many of us are fixers. Very few have just chosen to take up the cause of patient advocacy out of the blue. Instead, their children have been killed by bad surgeries, or they’ve lost a spouse or parent to a medical error, or a diagnosis has been missed (or misdiagnosed all together) and someone they love — or they themselves — have been treated incorrectly.

The Fixing itself becomes the catharsis for the anger, and it is extremely powerful. Helen Haskell, Ilene Corina, Patty Skolnik, Julia Shopick, Bill Thiel — among many others — are all fixers. They lost children and spouses to a system that didn’t do what it was supposed to do.

In some cases, their work is a spiritual mission. In others, it’s simply their way of dealing with anger. In all cases, they took their anger and sadness and refocused it toward something positive.

I am a Fixer. And I am proud of it.

We, the Fixers, are working toward improving the system that caused us the anger to begin with. We put our voices together and patients and providers are hearing us! We are saving lives with our work. There is NOTHING more powerful, nor cathartic, than saving someone else’s life.

If you find this blog post and you are still one of the Angry Ones, a Blamer, then please consider becoming a Fixer. I promise you, it will make ALL the difference in your quality of life.

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See follow up post: Doctors are Blamers or Fixers, too

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SPTCL and Post-Traumatic Meltdown

It comes on in a rush, and it makes me feel like a Sweet-tart — you know, one of those candies that you bite into, it grabs the sour corners of your tongue, and it just dissolves…. The overwhelming dread and tears begin to descend, sometimes I just collapse. It takes a good cry to get over it.

Then I pick myself up, with a renewed sense of making sure NO ONE else will ever have to go through that.

It’s PTSD — Post Traumatic Stress Disorder — which comes over me once or twice a year, and is a result of my misdiagnosis of three years ago. A trigger, in the form of a sad movie (The Family Stone) or someone else’s misdiagnosis story, or, this week’s trigger, which I’ll describe in a minute…. and I just melt down.

This week’s trigger: I received an email from a gentleman whose wife has been diagnosed with the same, very rare, very aggressive lymphoma I was diagnosed with. It’s called SPTCL, Subcutaneous Panniculitis-Like T-Cell Lymphoma. Sometimes it’s abbreviated to STCL. It’s extremely rare: in 2004, it was reported that only 100 cases had been reported worldwide in the past decade. And because it’s so rare, it’s almost impossible to find anyone who knows much about it.

(This post has been moved: http://www.trishatorrey.com/2007/06/22/sptcl-and-post-traumatic-meltdown )

Curiosity, Charity, Golf and more: Dad Taught Me How to Help You

Today is Father’s Day, and I can’t help but think about the huge influence my dad has had on who I am and why I do this work for you.  It seems fitting to share them with you today.

Dad gave me my name:  I am Patricia Torrey, daughter of Richard and Betty (Stetson) Torrey.  Yes, I am married, and I love my husband and his name, but I’ve always been proud of my name and decided to keep it.  Some of that pride comes from who I am, but just as important is my pride in what my dad accomplished in his life, and what I learned from it.  Yes — TORREY.  Me, too.

Dad taught me curiosity:  Sometimes we would have a discussion at the dinner table and either Mom or Dad would use a word I didn’t know.  “Look it up!” he would tell me — and that’s what I would do. 

Years later, as Dad started having health problems, he didn’t settle for just the information shared by his doctors.  To this day he continues learning everything he can, reads everything he can get his hands on, researches on the internet, interviews additional professionals — even forwards information he has found to my sisters and me.  His curiosity has unearthed information ranging from exploring surgeries online, to medical test and research results, to unearthing findings about pharmaceutical drugs, to choosing complementary and alternative therapies.  He studies not only his own health challenges, but Alzheimer’s information (for my mother) and others.  Yes — curiosity!  Me, too.

Dad taught me charity:  I don’t remember any time in my life when my dad wasn’t making a contribution to another person or an organization.  From the myriad not-for-profit boards he sat on, to the many gallons of blood he donated over his lifetime, to the tens of thousands of dollars he raised for support organizations, to the tens of thousands of dollars he has donated himself, giving to others in any form has always been a focus of his life.  Yes — charity.  Me, too.

Dad taught me spirituality:  We were church-goers, and both my parents were involved in the church.  No — not Bible thumpers, and certainly our religion was never imposed on others.  But the fundamentals of a belief in God and the Golden Rule were very much part of my upbringing.  I do this patient advocacy work because of my spiritual belief that everything happens for a reason.  That’s what I believe my misdiagnosis was all about.  Yes – spirituality.  Me, too.

Dad taught me work ethic and organization:  To the max!  The term “workaholic” gets a bad rap, as if there is something wrong with it.  Yes — I think when it’s used to avoid other things, there’s most definitely something wrong with it.  But Dad has always worked hard — and played hard, too.  And how he gets it all done sometimes confounds me.  He has to stay organized and that has somehow rubbed off on me, too.  Yes — work ethic and organization.  Me, too.

Dad taught me golf:  and yes, that affects my work on your behalf, too.  Golf is one of those sports that teaches us about life.  It teaches us to work toward a single point — a goal.  It teaches us to work in a team environment, but to better our skills as individuals, too.  It teaches us to overcome hurdles (I’m pretty good at getting out of those sandtraps!).  It teaches us to be flexible and to appreciate different environments.  It teaches us to get along with others.  It teaches us to be honest (even counting “whiffs” — meaning a swing at the ball that misses the ball completely).  It’s a sport with a great deal of dignity, honor and respect.  Yes — golf.  Me, too.

So how does that translate to becoming Every Patient’s Advocate?  Curiosity, charity, spirituality, work ethic, organization, and golf — pretty good foundations for this kind of work.  And I use them on a daily basis to share with you what I have learned about best patienting practices. 

Thanks Dad.  I love you, and I’m proud to be your daughter.

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Cancer Misdiagnosis: If I had a nickel….

… for every email I’ve received from friends, web visitors, blog readers, radio listeners regarding the man in England named John who was misdiagnosed with cancer, spent all his money, then found out he had no cancer afterall…

Yes — the misdiagnosis story is my story, too, minus two major points:  I didn’t spend all my money, and I didn’t sue the hospital.

Google provides links to (as of this blog post) 186 publications that carried the news.  I watched the report myself on both Good Morning America and the Today Show.  The short version is that John was diagnosed with an aggressive cancer, told he had only six months to live, and found out after several months that he had no cancer at all.  Because he had spent all his money, and run up his credit cards past their limits, he is now suing the hospital that provided the wrong diagnosis.

My questions:  which part of the story is so fascinating? the misdiagnosis?  the spent money?  the lawsuit?  And what will be the takeaway by readers and viewers?  Here are my thoughts:

When interviewed, John was asked whether he was angry, and he replied that yes, he was.  In my own experience, I was SO angry — so VERY angry — and I know that was difficult for many to understand.  Being told you will die within months turns your life around 180 degrees.  The torment and turmoil is devastating.  Then, later being told that “oops!” they made a mistake — and you will be fine afterall…. at the point where you should be elated, and your reality must turn back around 180 degrees again… you just can’t let go of the fury!  Until….  as that new reality begins to sink in….

Revenge comes next, and that’s where John’s lawsuit has him.  I read recently that the revenge center of the brain is among the most “pleasurable” — that when that part of the brain is stimulated, it is almost as satisfying as the taste of chocolate or the elation of new love, or the acme of good sex.  I don’t know if that’s true!  But I can tell you that ever since I decided to turn my “revenge” into helping other patients, it has been beyond satisfying.  Every day I get to wake up, do my writing or interviewing or presenting, and know I’m having a very positive influence on someone else’s life.  Honestly — that kind of revenge is TRULY sweet. 

And yes, for the handful of pathologists and oncologists who had a role in my misdiagnosis — I hope when they see my face in the newspaper, or hear my voice on the radio, or see notices about my presentations, they suffer a jolt of guilt when they do.  Fine by me.  It keeps them on their toes and may prevent the next misdiagnosis from happening.

Beyond the revenge — and perhaps the place John has not yet found himself — is the point when you realize that such a horrible experience has truly become the biggest blessing of your life…. yes….

My cancer misdiagnosis was the biggest blessing of my life.

The reasons are many.  I am a changed person in many ways.  My death-is-imminent diagnosis made me pause, and that gave me the opportunity to reassess and realign my priorities, focus on how to make sure my loved ones know how much I love them, learn to smell the roses, take time for ME, and gave me the strength to take some risks I had not previously been able to take.

The proof?  I talk to my father and my daughters, all of whom live out of town, several times each week. I sold my marketing business, changed careers, established DiagKNOWsis.org and EveryPatientsAdvocate.com to help others advocate for themselves, too.  I learned to shut down the computer to take some Trisha Time evenings and weekends. And after 18 years of being single after divorce, I let myself fall in love — and even get married!  Now THAT’s a risk, right? !!

Many people have asked me why I didn’t sue, by the way.  I did talk to a lawyer and was told that in New York State where I live, in order to prevail in a lawsuit, one must show physical harm.  Since I refused chemo, I was never physically harmed.  Evidently emotional and mental anguish don’t count, at least in New York State.  Regardless, even if there was a possibility of succeeding with a lawsuit, I never would have followed through.  I think some lawsuits have their places, but not this one.  If I had ever suffered through chemo?… hmm…..

More importantly though — the takeaways I would wish for John and YOU? 

For John, I hope he can get beyond his revenge.  Either that, or I hope he can turn his revenge into a way to help others because it is SO very positive and SO very sweet.

For John, too, I hope he can realize that every does happen for a reason.  He needs to figure out what the reason was for his circumstance — and then he needs to figure out how to make the best of that reason.

And for you, my readers?  Sharp patients know to GET A SECOND OPINION — and to pull out all the stops to learn everything they can about difficult and deadly diagnoses!  Had John done so, he would have figured out, like I did, that his test results were misread, and he didn’t really have cancer.

… and I would have had to think of something else to blog about today. :-)

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