Archive for the 'Cancer' Category

Dad — an Empowered Patient Sets a Fine Example

…. and today is his 81st birthday.

When people ask me how and why I began doing patient advocacy and empowerment work, I first tell them about my misdiagnosis, and then I tell them it’s because I learned how to be an empowered patient from my dad.

Since beginning his battle with cancer in 1986 — yes — more than 21 years ago — Dad has battled his illness every step of the way. From learning everything he could, first through the libraries, then through the Internet, to partnering with his doctors but retaining decision-making for himself, to second guessing problems with a drug he was taking, then figuring out he’d been given the wrong instructions, to doing all the same for my mom to help support her through her Alzheimer’s disease… yes… dad is the epitome of the empowered patient.

Learn more about the steps he has taken here….

Then join me in wishing him a Happy Birthday!

I’m proud of you, Dad…. with love…. from your eldest :-)

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Yanking the Cure Rug Out From Under Lymphoma Patients

In the continuing saga of two “miracle” drugs for those who suffer from non-Hodgkins lymphomas… the fifth most common cancer….

I told you six months ago about Bexxar and Zevalin, the two drugs which can treat non-Hodgkins lymphoma but were not being promoted by oncologists in private practice because they cannot, by law, administer it. That means they cannot profit by it. Remembering that American Healthcare is not about health or care, it’s about sickness and money…. we learned then that these drugs must be administered in (usually academic) medical centers because they have a radioactive component to them. So many oncologists provide infusion services themselves, but are not allowed to administer these two drugs, so they don’t tell their patients about them. I remain angry about that subject.

As if that weren’t difficult enough, there is now a new twist to this story, making it even more difficult for lymphoma patients to get this treatment they need — and deserve to have. According to the New York Times, Medicare has decided to reimburse administration of this drug in 2008 at about half the cost of the drug. Medicare made that determination, it says, based on what hospitals have been billing Medicare for the drug — but hospitals dispute that, saying they would never request reimbursement that would cost them almost $10,000 per patient! Patients need only one treatment, but it’s very expensive because the drug itself is very expensive.

Both hospitals and the manufacturers are confused as to how Medicare put together its reimbursement schedule. They believe errors have been made, and that Medicare’s numbers are wrong.

So here’s how this begins to domino….

Find the rest of this post at the new location of the Every Patient’s Advocate blog….


http://trishatorrey.com/2007/12/13/yanking-the-cure-rug-out-from-under-lymphoma-patients/

Cancer, Chemo, Emotions: It’s OK Not to be SO OK

In the past few months, I’ve blogged a few times about my admiration for those strong women on TV who are in the process of, or have transitioned through, chemotherapy.

Yesterday Robin Roberts (ABC) shared her chemo hair loss story during Good Morning America. Once again, Robin rose to the occasion, showing incredible strength, and it seemed to me, almost afraid of her own emotions — as if she had put her emotions on a shelf, perhaps to be dealt with later.

That was in great contrast with Hoda Kotbe’s (NBC) sharing of several weeks ago. Hoda shared her experience, after it was all over, but was still incredibly emotional and, it seemed to me, very real.

Then later last night, a woman named Lynn posted a comment to one of my blog posts about Robin’s experience, saying she was diagnosed a week before Robin was, and has had difficulty watching Robin’s reports, because she just doesn’t feel so strong. Her challenge is not about putting on a very public positive appearance; rather, she is challenged by paying her bills. (Thanks for writing, Lynn.)

This morning, I went to the ABC website to see what kinds of comments had been added to the story Robin shared yesterday. There are well more than a thousand comments — I read only about a dozen. But they are overwhelmingly atta-girls, and written by other strong women like Robin. So where were the comments by someone like Lynn?

And then it struck me. There was no allowance for individual differences… the role model had become not just a role model; rather, now she has become the expectation.

I do think there is an incredible amount of power and confidence (and healing) to be gained by doing anything you can to control your situation when faced with adversity. Robin shared her mother’s wisdom which I loved, “Make your mess your message.”

It worked for me. Taking control of my own situation, tightening my grip — I steered my own course and as a result, avoided chemotherapy all together.

But some people choose not to do that, and I think it’s unfair of those who are more public in nature to create a new expectation level that is impossible, and not even necessary for someone’s health. Hoda’s example was probably the best. She showed us her true and difficult emotions. But her emotions did not make her weak; instead they made her very real.

So that’s my message for today. No matter who you are, no matter how public or private your health situation, no matter what disease or debilitation it is — don’t let these public figures set YOUR standard. Don’t wonder what is wrong with you if you can’t meet their levels.

Instead, find your own strength, and transition through your treatment in your own way. If dragging yourself to work is the best you can do — that’s still fantastic! If wrapping yourself in a blanket, lying on the couch, and sipping hot chocolate makes you feel better, then go for it! If putting on a smiley face and pretending you haven’t been affected actually makes you feel better — then more power to you.

But do NOT let anyone else’s managing of their disease and treatment become your own expectation for yourself. Lynn figured out what she can handle. I figured out what I could handle. Robin and Hoda figured theirs out, too. None of us let anyone else define our expectations of ourselves. We have all just met our own expectations.

It’s up to each of us — man or woman — to figure out what our own individual levels are, and then to rise to our individual levels of expectation for ourselves. That’s patientude, too.

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From the desk of (11/10/07)…

Some miscellany from the week, not requiring blog posts on their own….fromthedeskof.gif

Heard this week from a young man in Central New York State where I live. He’s a young adult cancer survivor and has begun a social network for other young adult cancer survivors, ages 18 to 40: http://yacscny.wordpress.com . If you are a young cancer survivor, log on and see what Daniel is up to….

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Veteran’s Day is coming up — a perfect opportunity to thank a veteran or member of the military service. Regardless of your politics, we owe a debt of gratitude to these fine men and women who have worked so hard to protect our freedom. One of those freedoms is to make our own healthcare decisions — an important one!

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And speaking of Veteran’s Day — my radio show tomorrow features an interview with Dr. Ross Moquin who retired as a commander after 25 years in the Navy. He is a surgeon who treats traumatic brain injury — fascinating conversation about the procedures that were developed while he was in the Navy, and how they are being used to help civilians now, including stroke victims. You can listen right on your computer by linking here.

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announcemt.jpgAn Every Patient’s Advocate milestone this week: hit the 30,000 visitor mark on this blog since January. If you’ve been a regular visitor, I thank you — and hope you feel as if you’ve learned something. If so, will you share by making a comment? I’d love to know what has — or has not — been helpful.

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… and stay tuned for a BIG ANNOUNCEMENT soon! My reach is about to be extended big time — and you, my faithful readers will be among the first to know….

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How to Complain to Your Doctor – Part I

Several months ago, I heard from Nancy about a terribly embarrassing experience her husband had suffered during a prostate biopsy. From the beginning of the procedure through the end, he had been treated inconsiderately and rudely by the nurse. The urologist was condescending and short. And ultimately, once the biopsy was over, and wearing no clothing and with no covering, her husband was told by the nurse to get up and get dressed…. whereupon he got off the table and fainted. When he came to, he was crumpled on the floor, covered in blood, surrounded by a half dozen people, naked, and horribly, horribly embarrassed.

Nancy was appalled at the behavior of the nurse who she felt treated her husband like a second-class citizen. She also felt as if the urologist had no interest in hearing about the event. Her husband was afraid to say anything because he didn’t want lesser treatment from the urologist, whom he will have to see from now on, on a regular basis. But Nancy was afraid her husband would decide not to keep his appointments at all, based on the excessive rudeness of the nurse. He had already postponed his next appointment a few times.

Nancy’s question to me: she wanted to complain, but how could she do it so the doctor would talk to the nurse, and how could she make sure the nurse and doctor wouldn’t take it out on her husband at later visits?

There are actually several aspects to this question. Like healthcare itself, there is prevention, treatment of symptoms, and finding a cure.

Prevention would have had to have taken place long before Nancy’s husband was biopsied. Prior to ever seeing that urologist, he should have asked among his friends, others who have suffered through prostate cancer or had previously been biopsied, to find a urologist they respected and spoke highly of. That very likely would have found him a much better doctor than this one is turning out to be.

Treatment of symptoms is addressing the event itself.

Finding a cure is the walking — the taking his business elsewhere — leaving that doctor in the dust and finding one her husband can talk to.

Setting prevention aside in Nancy and her husband’s case (too late!) my choice would have been the cure. If this doctor had been their auto mechanic, or any other service provider, then they never ever would have put up with the behavior of either the doctor OR the nurse, correct? Nor should they in this case. Especially in the case of a specialty like urology…. while you won’t find them on every street corner, there are enough good urologists out there — so why not find one you can communicate with?

But Nancy wants to treat the situation. She wants to write a letter to the doctor, and she has questions about how she should approach that, what she can say that would most effectively explain her and her husband’s dissatisfaction with their experience with that doctor and his staff.

So here’s your cliffhanger…. tune in tomorrow! I’ll tell you what I’ve suggested and what’s going to happen from here.

(Link here for part II)

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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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One Woman, 6 Missed Diagnoses, A Lesson for Us All

You know I’m a fan of Jerome Groopman, the author of How Doctors Think.

In his incredibly eye-opening book, he tells of trying to get a correct diagnosis for his own health problem, and the fact that four doctors had four different diagnoses for him, and four differing ideas of how to treat it. As an oncologist himself, he was appalled. It spurred him on to consider the questions of how and why doctors diagnose and treat medical problems and disease.

I was reminded of Dr. Groopman when I read Carla McClain’s story in the (Tucson) Arizona Daily Star about a woman, Norma Greer, who just KNEW something was wrong with her despite the fact the SIX doctors told her she was OK. Eventually, armed with one-hour’s worth of research from the internet, Norma found a doctor out of town who diagnosed her Inflammatory Breast Cancer. She’s transitioning through treatment for it now, but most certainly, six week’s worth of IBC missed diagnoses have shortened her life.

Norma’s lesson is a lesson for anyone who “knows” something is wrong with them. We have those little voices in our heads. We know when we’re being blown off by doctors who, for whatever reason, don’t take the time to look further than what pops into their heads. We need to trust our intuition and take action.

If we don’t take responsibility ourselves, no one else — not even the professionals we’ve hired — is going to do it for us.

Sadly, we suffered through this with my mother-in-law a year ago. She was miserable with what her doctor (and those of us who don’t know medicine) thought were stomach, gastro-related problems. In fact, she died of ovarian cancer this past July — which had been at the root of her stomach upset and was too advanced to treat by the time it was finally figured out.

My own misdiagnosis was just the opposite — still a lesson, but not in the same way.

Norma — thank you so much for sharing your story with others. You are a fixer in one of the best ways.

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