The opportunity to work with Dr. Eastwood comes about as part of the weekly radio show I host.  We’ve begun a series of ethics conversations, airing monthly, tackling tough questions faced by patients and their families every day. Questions such as: How do we make end-of-life decisions for loved ones with diminished capacity (like Alzheimer’s disease)?  Should we have the right, as autonomous human beings, to decide when we are ready to die? Should a woman who is pregnant with multiples be able to selectively reduce the number of fetuses when she knows they are all at risk because there are so many of them?  Should doctors tell their patients how long they have to live?

See?  Not easy to answer, not any of them….

As we worked on the next ethics show, the conversation turned to how physicians view their professions. The possibility that they start out in med school with very idealistic views of what that career will look like (saving lives and improving quality of life) to the realities of conducting business — dealing with insurance and time constraints and all those shackles their work ends up imposing.

The conversation turned to the Hippocratic Oath.  That’s the oath we patients believe all our doctors took as they became MDs or DOs or whatever their title is… and most of us believe it includes the statement “First, do no harm.”

They don’t.  And it doesn’t.

In fact, it turns out that different medical schools use different oaths.  Not only that, many of them edit the oath their students take to fit… what?  I’m not even sure. But the point is, especially when it comes to medical errors and the question about whether doctors should apologize for mistakes they have made, we patients cynically ask why they have violated that Hippocratic Oath — and it turns out they may not have even taken it.

Does that give physicians a free pass to make mistakes?  Of course not!  I just find it interesting that there’s one more assumption on the part of patients about the medical profession that isn’t true.

Upon further discussion with Dr. Eastwood we also learned that there is another oath which many students take, called the Oath of Maimonides.  According to Dr. Eastwood, Maimonides was a physician, judge, and Jewish rabbi who lived in Muslim Egypt 1135-1204. He had a huge following and was very influential.

But — you’ve got to love this, too.  The Oath of Maimonides wasn’t even written by Maimonides. It was likely written by a German physician, Marcus Herz (1747-1803).

This oath is lovely, lyrical, almost prayer-like and honestly quite moving. I bring it to you because I think you could print it, take it to your physician, and perhaps begin a conversation with him or her.  A reminder of whatever oath your doctor took may cause him to pause for a moment and reorient himself to his reasons for choosing such a noble profession.

(Thanks to Dr. Eastwood for providing the following):

OATH OF MAIMONIDES

Thy eternal providence has appointed me to watch over the life and health of my fellow human beings.

May the love for my art actuate me at all times; may neither avarice nor miserliness, nor thirst for glory, or for great reputation engage my mind; for the enemies of truth and philanthropy could easily deceive me and make me forgetful of my lofty aim of doing good to my patients.

May I never see in the patient anything but a fellow creature of pain.

Grant me the strength, time, and opportunity, always to correct what I have acquired, always to extend its domain; for knowledge is immense and the spirit of man can extend infinitely to enrich itself daily with new requirements.

Today we can discover our errors of yesterday and tomorrow we may obtain a new light on what we think ourselves sure of today.

I have been appointed to watch over the life and death of my fellow human beings.  Here am I ready for my vocation and now I turn unto my calling.

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Enough excuses, you say!

But neither of these efforts, nor the emotions associated, can come close to the roller coaster Daniel’s family has ridden in the past nine months.  Even those emotions pale in comparison to the relief they felt during the past week as they learned that, just like Heather’s story earlier this summer, and my story, too, Daniel doesn’t have SPTCL either.

Learn more about their discovery and the report from the NIH.

So.  A h*ll of a track record in 3-1/2 months, wouldn’t you say?  Three reports of subcutaneous panniculitis like t-cell lymphoma (SPTCL).  Two of them aren’t even cancer.

I wish you could hear the song in my heart, and see my smile and tears of joy!  If not one single other patient ever benefits from my work, then I will always know these two people – Heather, then Daniel — have been spared chemotherapy.

Pressing on. And OH so happy!!

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Because so many of you, my readers, have checked here to learn more about Randy Pausch, I bring to your attention a comment made by Claudia, one of you, on my February post.

Claudia tells us there is an update on Randy’s page, and he’s beginning to struggle further with his cancer. Here’s a link to the Randy Pausch Update Page. (and thanks for the heads up, Claudia.)

If you are not familiar with how hospice works, this is a great opportunity to learn about it. Just as we empowered patients learn about taking care of ourselves when we get sick and need medical care, it’s just as important to learn how to prepare to die.

Our well-being during the last few weeks or months of life, and both physically and emotionally, is supported during hospice care. Patients choose hospice care at the point where it no longer makes sense to pursue curative care.  Hospice supports palliative care which means keeping the patient pain free and comfortable through the point of death.  Learn more about hospice from my colleague Angela Morrow at About.com.

My prayers are for Randy’s comfort and peace, and just as important, his family’s comfort and peace during this time.

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Read previous posts about Randy Pausch here.

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PS — For those of you who have left comments on my blog for Randy — please know that I have NO idea if they ever get to him.  I’m blogging about him out of my respect for how he has approached his disease and the lessons he has taught all of us.  But whether or not he even knows this blog exists is a question mark.  You are more than welcome to leave your comments here!  But I don’t know if Randy sees them or not.

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Here’s the bad news:  Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma.  Also written with Greek letters:  cutaneous ?/? T-cell lymphoma

To say that both Heather and I were shocked is an understatement.  If you read my post a few weeks ago, you know that she contacted me when she had a lump biopsied, and was told she had SPTCL (subcutaneous panniculitis-like T-cell lymphoma.)  Thing is — like in my case four years ago — she has no other symptoms.  Further, since then she has had additional tests, including a CT scan that shows no abnormalities, and blood work that is clear.  So yes — shocked.

And, as if it’s not bad enough that she’s been dealt this blow — listen to this: when a review from the NIH is requested, the protocol is for it to be submitted by her primary care doctor or her oncologist, then for the NIH to report back to the doctor who requested the review.  That doctor is then responsible for getting the results back to Heather.

Heather’s biopsy was submitted to Dr. Jaffe at the NIH in early June. When she hadn’t heard anything back by yesterday, almost a month later, she sent an email to Dr. Jaffe just asking when she could expect the results.

Turns out the review was completed June 18 — two weeks ago! — and returned to Heather’s doctor…. and yet no one — not the primary care doctor OR the oncologist has contacted Heather with the results.  Still.  Today.  Not a single phone call.  No one!

The reason Heather knows about her diagnosis is because Dr. Jaffe was considerate enough to attach it as a pdf to her reply email.

So we’ve learned a couple of lessons from Heather’s odyssey so far…. first, to be assertive about reviewing a diagnosis.  Yes — it turns out Heather was misdiagnosed, too — although in this case, she does seem to have lymphoma.  But if she had not pursued a review of her diagnosis, she would be treated for the wrong lymphoma.  Then what?

Second — when you don’t get test results back — go looking for them!  And don’t take no for an answer.  You can be polite, but you need to be assertive.  Had Heather not gotten in touch with Dr. Jaffe, she would still be waiting for the word.  And as far as her doctors are concerned — she’s still waiting!  (I’m having trouble stopping myself from calling these medical bozos what they are.  Oh.  Did I call them that?)

CGD-TCL is just as rare as SPTCL, no doubt about it.  It will be impossible to find a doctor to treat it who has experience with it.  I’ve suggested to Heather that she find a doctor who is willing to research and learn alongside her — a true partner for this unusual disease.  Easier said than done, I’m sure!  But what a blessing if she can actually find one.

If you’d like to follow Heather’s odyssey, I’ll keep you updated here… or better yet…. check out her new blog.  Then, keep Heather and her family in your prayers.

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[If you haven't heard of this fine man, you should know that in August 2007, he was given up to six months to live. He is dying of pancreatic cancer, a swift killer with very few who survive it more than a few months once it's diagnosed.]

Then in February I posted an update with a link to his personal blog. It has been one of the most linked-to posts I’ve ever written here.

I learned Randy appeared on Oprah today. That means that people who had not heard of Randy, and his “lecture of a lifetime” before today have certainly heard of him now.

I didn’t see Oprah, but I did decide I needed to check back in with this remarkable man. On his personal blog I found a link to the video of his address to the Carnegie-Mellon Class of 2008. (As an aside, I’m proud to say that my closest friend’s son, named Tim, was a top engineering graduate at Carnegie Tech this year — you go, Tim!)

Just like any of the other appearances of Randy’s I’ve witnessed, his graduation speech was moving; moving to the point that you just wish — just WISH — and hope and pray that his death is a loooong time coming from now. He is so generous with his words of wisdom. He needs more time to share them all.

He made two excellent points for the rest of us:

• When we are on our deathbeds, it won’t be the things we did that we regret. It will be the things we didn’t do.
• To live your best life, find your passion — the thing that fuels you from the inside. You won’t find it in things you buy or own. You’ll find it will be grounded in other people.

Since first discovering Dr. Pausch last year, I’ve felt a bit of a kinship. Unless you’ve ever heard that death sentence (you have only six months to live) you can’t really relate to it. But if you have heard it? You discover there is a very strong tie that binds you to that person — and I feel that tie with Randy Pausch.

Take the six minutes to watch his commencement address. It will stay with you, as I hope it will stay with those many graduates of Carnegie Mellon who were lucky enough to have known Dr. Randy Pausch, even if it was only for those few minutes at commencement.

Find an update to this post:  A July Update on Randy Pausch

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]]> http://trishatorrey.com/2008/06/10/randy-pausch-a-commencement-address-of-a-lifetime/feed/ 3 http://trishatorrey.com/2008/03/06/patrick-swayze-randy-pausch-pancreatic-cancer/ http://trishatorrey.com/2008/03/06/patrick-swayze-randy-pausch-pancreatic-cancer/#comments Thu, 06 Mar 2008 13:24:39 +0000 Trisha Torrey http://trishatorrey.com/2008/03/06/patrick-swayze-randy-pausch-pancreatic-cancer/ The sad news came of Patrick Swayze’s diagnosis of pancreatic cancer. It’s a deadly cancer, with no way to detect it early, and little chance of survival past a few weeks or months.

Several people have asked me if pancreatic cancer is the same cancer that afflicts Randy Pausch. You may remember Dr. Pausch as the Carnegie Mellon professor who gave his lecture of a lifetime in Fall 2007.

Dr. Pausch has done a great job of battling his cancer. He was given only a few weeks to settle his affairs, yet he is still fighting strong, six months later.

A close friend, Paul, succumbed to pancreatic cancer last year. He lasted only three weeks past his diagnosis — breaking many hearts among those of us who knew him.

So for those of you who are so inclined, please say your prayers for both Dr. Pausch and Mr. Swayze and their families. Your prayers have a far better influence on pancreatic cancer than most therapies can have.

(Photo Credit: Alan Light through Flickr)

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I watched it again this morning. As I said when I wrote about Dr. Pausch’s lecture last September, it is simply brilliant and brilliantly simple.

And it still melts me down.

But this post is not about Dr. Paush’s lecture; instead it’s an update on his health and life. I discovered this morning that he keeps a blog that provides that update. He is still in treatment, and so far is finding some success with a cocktail of drugs containing Gemcitabine+Tarceva+Avastin.

He’s been doing everything from spending time with his family, to advocating and lobbying Congress for more funding for research in pancreatic cancer. And yes, he’s still collecting stuffed animals and achieving his goals.

So in case you were wondering, or in case you’d forgotten, Dr. Randy Pausch is alive, as well or better than might have been expected, and is definitely making a difference.

As Dr. Pausch stated in his lecture, “We cannot change the cards we are dealt; we can only control the way we play the hand.”

Find updates to this post:

June 10, 2008:  Randy Pausch:  A Commencement Address of a Lifetime

july 25, 2008:   A July Update on Randy Pausch

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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