Sunday, November 13, 2011

...and how was Mayo?

I must tell you, Mayo was kind of a bust. As is usual at Mayo, we were scheduled early in the morning for a blood draw. (I am so aware of my use of "we." I originally put "draws," as if I had one, too! I feel so connected to Jud in this almost symbitic process). I am fine with the early morning tests and understand that it would help the doctor know how you were doing right away. At 10:30, Jud had x-rays. Then the long wait. We were supposed to see our (!) new doctor at 2:30. We were put in a room and a nice young research assistant came and signed Jud up for another study, a bank of people with pancreatic cancer. Good idea.

We waited and we waited. No one came into see us and tell us what was going on as we sat in the "little white box," both feeling quite anxious. So much depended on this. Finally, two hours later, the doctor arrived. He was handsome and dressed beautifully. However, there was no apology or explanation for being late. We would have understood if he had an emergency or another patient who took more time. He shook Jud's hand. He ignored me. I practically grabbed his hand from his side and shook his.

He scolded Jud for not having all of his materials there. Jud had made a special trip to his office in doctor in Minneapolis and hand carried it all in. It was all there. He knew little to nothing about the protocol of the study Jud was interested in. "She" will tell you, he said. "She" was the research coordinator. "She" didn't have a name. 

He was very negative that anything would help Jud. The longest anyone had stayed on this drug was four months. They had to stop because the cancer progressed or because the side effects were too great. He was very cold and negative about the whole affair. We could accept that this combination of medications could have little value, but please, please, just tell us in a kind way!
Finally the research coordinator came in. She was harried-looking but reasonably nice. Dr. S. left in a hurry, shaking Jud's hand. He tried to pass me and I again grabbed his hand. He refused to look at me.

Jud was accepted into the study ("It is your only alternative" said the doctor.) We will go back after Thanksgiving for four days. 

Jud went home and, after a little thought, he called the research coordinator and asked to fire the doctor. No one with a serious illness deserves to be treated this way.

Interestingly, this is our second rude doctor. Our first was at Stanford. When I read one of the Steve Job's eulogies, I discovered that he was his doctor, too.  I'll bet he was nice to Steve1 Our main doctor at Stanford, Dr. Albert Keung, was one of the kindest doctors I have ever met. 

 The Brothers Mayo

As we left Stanford, De. Keung said to Jud, "I will always be your doctor. You will always be my patient. Please call me at any time."

As it should be.

P.S. As is true of all major medical centers, members of my family have also had wonderful care at Mayo Clinic in my family. My brother was treated with such caring when he had esophageal cancer and today is cancer-free.


20 comments:

  1. Suz, I'm so sorry to hear about how the Dr. treated you both, not a very good bedside manner. Bravo to Jud for firing him. If enough people did that maybe these Dr's that seem to have no sympathy or manners would get the hint! Theres no reason for having to have you wait that long either. They could have told you how long it would be and you could have left and had lunch or done something more productive. I'd like to bill those Dr's for the time I sit and wait on them!!!!
    I'm sure its hard to stay postive but do your best, Were all praying for you both!
    hugs Lynn

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  2. This just makes me angry for you guys. I'm glad Jud fired that doctor. Who will be the replacement? Or, will you participate in the study, still?

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  3. Oh my gosh--This is unbelievable, Sue. Can you imagine the lack of empathy? I am in tears just reading about it.

    I don't know if you got my email a week or so ago...It's about a movie on Netflix called Burzynski. He is a dr. in Texas who has cured so many people and he does clinical trials...It is truly worth seeing the movie to decide if Jud would like to see if that option is available to him too.

    I am so happy that you got the book--I think it couldn't have come out at a better time...sending love your way,
    Cindy

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  4. Oh, Suz. That you and Jud were treated in this way is just a shame. You would think someone in the business of treating cancer would be kindhearted and warm.
    I'm hoping being back home will bring healing and direction.
    lots of hugs to you.
    xo
    lynn

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  5. Oh Suz, you are so right... no one deserves to be treated this way, and I am glad Jud fired him. Sometimes I think doctors forget we are paying them to do us a service, not a favor...and doctors who can't treat patients with compassion should limit themselves to research. I am SO sorry that you were both treated in such a way...you don't need that right now. Sending good and loving thoughts to you, and my prayers, as well...XO

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  6. Oh Suz, how I empathize with your experience at Mayo. I don't know why some doctors enter the field of medicine if they don't have a compassionate bone in their body. It should be a requirement in order to be a doctor if you ask me. We experienced similar attitudes with George's Neurologist and his Chemo Oncologist. Thank goodness we only had to see the Neurologist on an occasional basis. On the day the oncologist told us that the chemo drug wasn't working (a few days after Christmas last year) and there wasn't anything more he could do for us, he had the nerve to shake George's hand and say, "Have a Happy New Year!" and left the examining room. Outrageous!!! We both sat there totally stunned!!!

    I'm happy for you that Jud was accepted into the clinical study. At least the experience wasn't a total bust.

    xo
    jeanne

    P.S. I totally understand your use of the word "we." You two are in this together!

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  7. Dear Suz,
    I`m very sad for Jud and you, being treated like that, without any emphaty or kindnes---those (many) kind of people should never be accepted as doctors! I so hope the clinical study, will give you hope of treatment back.
    I know things are the same all over the world, -and here too. Patients-- and cancer patients, are often meeting doctors and hospital staff, without any form for human love, and kindness -my sister was one also-
    and that kind of treatment,can almost breake ,even the strongest mind-when being seriously ill.
    So good the two of you are strong together, Suz.I hope many other than Jud asks to fire that man!
    Love and hugs-
    Dorthe

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  8. I classify this kind of behavior under "Do No Harm." It seems that doctors have to be reminded, when taking that oath, that harm is not merely physical, but also emotional. Unfortunately, the medical field has too many of them who think in purely physical ways. A course in good manners would be helpful too, especially in the case of this rude doctor.

    Jud did the right thing to fire him.

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  9. Suz my heart is heavy for the harsh experience you and Jud had to endure. Kindness is the easiest thing we humans can extend to one another and this doctor was not kind. I wish I could give you a big warm hug just remind you that you and Jud are cared about more than you know. Prayers continue my dear...

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  10. I'm so sorry to hear about that bad experience with the doctor. Waiting in a room like that for two hours is ridiculous. And the doctor's personality leaves a lot to be desired. I wonder if the Mayo Clinic has patient advocates? If so, that's the place to contact for help. I can't help but think that someone there would want to know how you were treated. This cancer crap (not a medical term...my term) is hard enough and you need to be surrounded by compassionate, understanding people.

    I'm sure you've done research online, but I know Seattle Genetics has a clinical trial going for pancreatic cancer. It's phase one, so it's not too far along. My son is in one of their trials, so I check out their website from time to time and saw the one for pancreatic cancer and thought I'd at least mention it in case you didn't know. http://www.seagen.com/clinical_trials_solidtumors.shtml

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  11. I'm just appalled that a professional adult person would show such a lack of basic manners, much less compassion or kindness.

    I hope it's of some comfort to you to know that you've got lots of friends who've got your back and would like to soap the doctor's windows or TP his house on your behalf- I guess that's not very mature either either, but for a minute it made me feel better to think about it.

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  12. The statue of the Brothers Mayo....like they are waiting....a long time...

    No reason to waste the the of people with pancreatic or any other cancer. It makes no sense.

    I love you.

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  13. Suz, I'm sorry you and Jud had that experience. Ditto on what the others have said and I'm right there with Beth about TPing his house! I hope that this week will be gentler and kinder to you both. Hugs!

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  14. How awful! :( I am so sorry this happened to you. It isn't right for any doctor to treat someone like this. I hope you are able to find the care that is deserved for Jud!

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  15. Oh, I am SO sorry for you both! That is just unacceptable on all levels.

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  16. Suz,
    I wish I could say that I am so surprised, but I am not. Doctors who have not had their share of personal adversity are rude and unfeeling. I celebrate that your husband fired that guy. If more people did the same, there wouldn't be room for doctors who are unkind.

    I will say a prayer that God leads you to someone wonderful to be your husband's doctor.

    Karen

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  17. Suz,

    My heart just aches for you and Jud. Good for you guys and deciding to fire that doctor! How dare he treat anyone like that!! Hopefully it is a wake up call for him. I know we went through good and bad doctors with my mom's cancer. We clung to the good ones and tolerated the bad ones.

    You both are in my daily prayers, sweet friend.

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  18. Stopping in to say "hi", have been remiss in doing so and to read this is so disheartening...to learn that such dreadful experience adds to the burden you are shouldering already is sad. Good for Jud for speaking out!! And good for you for sharing this with all. I'm having difficulty finding new physicians, most of mine are retiring and I feel I'm not only losing good Drs, but good values I came to depend on: a hand-holding when needed, their time, the feeling of genuine concern.

    To know you and Jud were treated this way is alarming since Jud is a Dr, but at the same time he has given me faith that there are Drs. who do still have these professional and caring attributes because Jud expects it and is obviously appalled by the lack of same........I've about given up.

    Sending you virtual hugs and at the same time wishing you and your family a blessed and beautiful Thanksgiving, Suz!

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  19. Oh Suz...
    I don't understand why some people in the medical field can be so cold and uncaring. Don't we enter it to take care of people, to comfort people?
    Hugs and continued prayers to you and Jud.
    xoxo.

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  20. Oh dear my heart goes out to you....sending you lots of love today dear one. Plus wishes for a blessed Thanksgiving. xoxo

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