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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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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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Or link here to empower yourself at
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  ………………

Doctors and Patients: It’s All About POV

Point of view — I was struck as I read through the various essays written by Dr. Scott Haig, and published through Time and CNN during the past several weeks, how much point-of-view changes how we look at the world. More importantly, I have a better understanding about how communications improve when we see OUR world through someone else’s point of view.

Here are the essays I’ve found so far:

When the Patient is a Celebrity

When the Patient is a Googler

My Patients are Not Customers (which I’ve blogged about previously — see this post)

I’ll state up front that I think Dr. Haig does a pretty good job at seeing the medical world from a patient’s point of view. I disagree on a few observations but on the whole, in a conversation, we would respectfully get beyond those fine points and pat each other on the back for ‘getting it.’

Here’s what I mean: Dr. Haig (like my guru Jerome Groopman, MD) uses point of view to help his patients understand what to expect from him and his treatment advice. And, even more important, he is able to elicit from his patients what they expect from him, from themselves, and from their treatment decisions. He helps them see his point of view.

I believe that doctor-patient communications, and (I’ll even go so far as to say) patient outcomes, are rooted in that premise: that it’s important for both sides to see the other’s point of view. It’s a skill — and Dr. Haig seems to have mastered it.

In the one article about the patient who googles too much (She was so mired in her own point of view, that she was having a problem working with any doctor who could help her. ) The real point to the essay is that Dr. Haig was able to analyze his patient’s point of view, realized he would not work well with her, and then decided to send her away. [[ Note: — I’m not sure it was her googling, but rather her attitude, that made him decide to send her away. I think that patients who learn about their symptoms and diagnoses are empowered to have a respectful conversation with their doctors, and that’s what I encourage. ]]

Another article talks about a football player who became Dr. Haig’s patient. They had a good relationship because Dr. Haig managed his the patient’s expectations based on what he knew about the patient — he was respectful of the man’s sports career, even though he really had no idea who the player was. And later, when the player returned for still more treatment related to his new career — pharm sales — Dr. Haig was able to take point of view into consideration to work with the patient.

Here’s the problem. There just aren’t enough doctors OR patients who work with each other in this fashion.

And I realize that it’s what I’m trying to do as I work on behalf of patients — helping them understand how the medical world has changed — giving them a sense of their practitioners and providers point of view — to help them get better care.

AND — I try to do the same in reverse. For those doctors and other providers who just don’t “get it” — it’s because they either refuse, or are incapable, of seeing their patient’s world through a patient’s point of view.

Here’s your assignment for today: Pick someone you disagree with — a politician, a co-worker, a neighbor — and see if you can figure out his/her point of view. How do they see the world differently? What is their background for seeing it that way? And how do they see what you say and do through their own point of view?

It doesn’t mean you have to like them any better. But once you can see their point of view, it will certainly help you understand why they say what they say and act like they do. And you’ll be able to communicate more effectively if you’re ever in a position to need that skill.

  ………………
Want more tools and commentary for sharp patients?
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Or link here to empower yourself at
EveryPatientsAdvocate.com

  ………………

Doctors and Patients: It’s All About POV

Point of view — I was struck as I read through the various essays written by Dr. Scott Haig, and published through Time and CNN during the past several weeks, how much point-of-view changes how we look at the world. More importantly, I have a better understanding about how communications improve when we see OUR world through someone else’s point of view.

Here are the essays I’ve found so far:

When the Patient is a Celebrity

When the Patient is a Googler

My Patients are Not Customers (which I’ve blogged about previously — see this post)

I’ll state up front that I think Dr. Haig does a pretty good job at seeing the medical world from a patient’s point of view. I disagree on a few observations but on the whole, in a conversation, we would respectfully get beyond those fine points and pat each other on the back for ‘getting it.’

Here’s what I mean: Dr. Haig (like my guru Jerome Groopman, MD) uses point of view to help his patients understand what to expect from him and his treatment advice. And, even more important, he is able to elicit from his patients what they expect from him, from themselves, and from their treatment decisions. He helps them see his point of view.

I believe that doctor-patient communications, and (I’ll even go so far as to say) patient outcomes, are rooted in that premise: that it’s important for both sides to see the other’s point of view. It’s a skill — and Dr. Haig seems to have mastered it.

In the one article about the patient who googles too much (She was so mired in her own point of view, that she was having a problem working with any doctor who could help her. ) The real point to the essay is that Dr. Haig was able to analyze his patient’s point of view, realized he would not work well with her, and then decided to send her away. [[ Note: — I’m not sure it was her googling, but rather her attitude, that made him decide to send her away. I think that patients who learn about their symptoms and diagnoses are empowered to have a respectful conversation with their doctors, and that’s what I encourage. ]]

Another article talks about a football player who became Dr. Haig’s patient. They had a good relationship because Dr. Haig managed his the patient’s expectations based on what he knew about the patient — he was respectful of the man’s sports career, even though he really had no idea who the player was. And later, when the player returned for still more treatment related to his new career — pharm sales — Dr. Haig was able to take point of view into consideration to work with the patient.

Here’s the problem. There just aren’t enough doctors OR patients who work with each other in this fashion.

And I realize that it’s what I’m trying to do as I work on behalf of patients — helping them understand how the medical world has changed — giving them a sense of their practitioners and providers point of view — to help them get better care.

AND — I try to do the same in reverse. For those doctors and other providers who just don’t “get it” — it’s because they either refuse, or are incapable, of seeing their patient’s world through a patient’s point of view.

Here’s your assignment for today: Pick someone you disagree with — a politician, a co-worker, a neighbor — and see if you can figure out his/her point of view. How do they see the world differently? What is their background for seeing it that way? And how do they see what you say and do through their own point of view?

It doesn’t mean you have to like them any better. But once you can see their point of view, it will certainly help you understand why they say what they say and act like they do. And you’ll be able to communicate more effectively if you’re ever in a position to need that skill.

  ………………
Want more tools and commentary for sharp patients?
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Or link here to empower yourself at
EveryPatientsAdvocate.com

  ………………

Behind the Counter Drugs?

When the doctor wants us to take a certain drug, he provides us with a prescription, which we take to the pharmacist to fill.

When we decide on our own to take a drug, we go to the pharmacy to purchase it. It’s considered “over the counter” (OTC) because it’s sitting on a shelf, available to anyone who wants to purchase it. You may remember about a year ago finding fairly empty shelves in the cold and flu section…. it’s because there was an ingredient in those medicines that was being abused.

So now it looks like there may be a new, more formal designation for “behind the counter” (BTC) drugs — meaning — you won’t need a prescription, but you can’t just pick them up off a shelf either. If you want to purchase one of them, you’ll have to ask the pharmacist for permission. That’s what happened to those cold medicines last year. (And I think I remember in my youth (!) that condoms and pregnancy tests were kept there, too?)

The Food and Drug Administration is taking comments on this concept — they want to know what we think about the concept of behind the counter drugs. The drugs in question could range from some of the statins (cholesterol reducers like Lipitor), those cold medicines I mentioned above, insulin, even Viagra might end up BTC.

A bit of background research tells me that locally based pharmacies think it’s a great idea — no doubt it’s the trust factor. Patients, in particular those without health insurance, think it’s a good idea. Big box pharmacies are afraid of the logistics. OTC manufacturers whose drugs would end up BTC aren’t happy at all. Doctors don’t like the idea because it takes some prescribing out of their control.

Learn more about the pros and cons and other’s opinions at Pharmalot.

What do you think? Let the FDA know: http://www.fda.gov/oc/op/btc/

This is your chance to be heard!

  ………………
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Or link here to empower yourself at
EveryPatientsAdvocate.com

  ………………