Monday, May 11, 2009

What I'm Learning

One of the unexpected rewards of this process (above and beyond the outpouring of compassion and prayers that has been so evident and so helpful to me) is gaining the wisdom of insight and personal experience that so many of you have shared. There are ways to make this journey more difficult and other ways to make it less so. I want to list as much of this wisdom as I can in this posting -- in case you find yourself in need of it or know someone else who may profit by it.

Please revisit this posting from time to time, as I plan to update it on a now-and-then basis. And for goodness sakes, please feel free to add comments of your own to this list!!

1. From Nancy Bernardez: "You must not let your head completely take over this topic. Stay grounded, meditate, and remember the divinity that is within you. Allow Deb to fulfill the role she designates for herself; she will know exactly what to do for you and you will never be alone in this. Set your ego aside and accept everything that is offered by all of us who love you and are praying for your speedy and complete recovery. Remember: breathe, meditate, and find the meaning in the message."

2. From Emily Seay: "Probably the worst part of cancer is the not knowing. There is a phrase we use [here at Johns Hopkins Hospital]: 'tolerating ambiguity.' It can be exquisitely painful. Often worse than any physical pain the cancer and/or treatments can throw at you. The upside of this situation is not only that you've had excellent health, you have devoted yourself to spiritual and psychological training which will benefit you in ways you cannot yet imagine. Your intellect, organizational skills, choice of mate, Sagittarian sun sign, etc. etc. all bode extremely well for a positive outcome. I believe your natural optimism will cary you through some dark hours, but you can also remind yourself, that when you are chosen to walk this path, it is yours, and it will offer you gifts as well as lessons that few of us will experience..."

3. From Kathy and Bill Siddons: "Recovery is more than a mending of the body. It is an easing of the mind, a calming of the heart, and a healing of the spirit."

4. From Lisa Lapp: "A strong opinion I have developed about cancer treatment since working at Fox Chase, and then experiencing life and seeing cancer in friends and others since then, is that the only way to treat cancer is very, very aggressively -- and at the best possible clinical facility for your particular diagnosis. And with a treatment plan that is both comprehensive (all disciplines woven together) and thoroughly specific to your case. And with a heightened awareness of all new and trial treatments that may be available. And with lots of questions, at every step."

5. From Barbara Siddons: "Remember that recovery from anesthesia and surgery is a process and not an event -- take time!!"

6. From Sherry Vardaro: "When you know the moment is right, close your eyes and visualize putting your trust in 'somthing or someone else,' whether it be the doctors, nurses, a family member, the universe, God or all who want to care for you right now. The act of trusting and visualizing yourself passing on any remnants of control to another will relieve you of the burden of holding the belief that you have control -- which is only an illusion and won't serve you well."

7. From Frank Barch: "While it's important to choose the right doctor and medical facility for your surgery, it's even more important to select the right doctor and medical facility for your follow-up work. That is where most of the decisions about healing and future treatment are made."

8. From Allison Prettyman: "If you decide to blog about this, don't make it simply an updated medical report. Use the opportunity to share what you are feeling and where you are right now with all those that love you and care for you."

9. From Jean-Marie Barch: "Choosing the right medical facility is not necessarily finding the most advanced facility. The right facility for you is the one where you feel most comfortable and where you place the most trust."

10. From Randy Lyons: "Getting a second opinion may not change any of your decisions about treatment options. But it may provide you with much-needed comfort and confidence in your medical team and the decisions you've reached together. As your journey unfolds, you should be able to look back at those decisions and those people and feel good about them."

11. From Chris Smith: "Unfortunately, hospitals are very noisy places at all times of the day and night. I have not endured surgery, but have had to stay over [at Jefferson Hospital] in empty rooms during heavy snowstorms. I had NO physical discomfort to deal with, but could not sleep with all the noise! And by the way, there is no regulation that says you have to keep your [hospital room] door open..."

12. From Sharon Smith: "Those little cells are working to reconstruct you as I type. I can just picture them, wearing construction hats, saying, 'C'mon guys! Let's heal this one up! We'll get paid double time if we work overtime!' I imagine it's more the blue-collar-type cells that do all the dirty work of healing and reconstruction after a major trauma. It's the more academic-type cells that enjoy the restful, meditative parts of healing. I wish you, and all your tiny little cellular beings, good luck in the healing process!"

13. From Emily Dickinson [by way of our neice, Emily Seay]:

"'Hope' is the thing with feathers ---

That perches in the soul ---

And sings the tune without the words ---

And never stops --- at all ---"

14. From Martha Seay: "Living with cancer is like living on a roller coaster. When you get an 'all-clear' set of tests, you rise to the top -- and stay there for a couple of months. But the week or so before the next battery of tests, you get anxious all over again and try to prepare yourself for possible bad news. Another 'all-clear' report puts you back on top. A 'not-so-good' report just increases the anxiety. A 'we-may-have-a-problem' report plunges you all the way to the bottom. You live like that even after years of 'all-clear' tests. That's just how it is."

15. From Bala Krishnaraj [my flute teacher]: "Be happy -- and everything else will follow."

16. From Anthony Paino [Dinosaur curator at the Academy of Natural Sciences. He'd like to see me back in the prep lab soon...]: "I have to tell you this whole 'illness' thing sounds like a dodge. If you didn't want to volunteer for Bugfest '09, all you really had to say was 'no.' Haven't you heard of the therapeutic value of mad, screaming children [whom one finds frequently in the halls of the Academy...]? Isn't it exposure to insane ten-year-olds the method that those people in Tibet have used to live well into their 100's? Wait, no. I think that was yogurt."

2 comments:

  1. Hospital Noise Levels On the Rise
    One of the biggest complaints from both hospital patients and staff: noise. But a new study finds little is being done to keep decibel levels down.

    The Johns Hopkins University study found that noise levels in hospitals around the world have steadily increased over the previous five years. Noise not only disturbs patients and hospital staff, but also increases the risk of medical errors and hinders efforts to modernize hospitals with speech-recognition computer systems, the researchers said.

    They also cited previous research that suggested that excessive noise may slow patients' rates of healing and contribute to staff stress and burnout.

    This study found that since 1960, average daytime hospital sound levels have risen from 57 decibels to 72 decibels and average nighttime sound levels have increased from 42 decibels to 60 decibels. The World Health Organization's hospital noise guidelines suggest that sound levels in patients' rooms should not exceed 35 decibels.

    Much of the noise in hospitals is also in the same frequency range as human speech. This can make talking difficult, forcing nurses and doctors and other staff to speak even louder to be heard, which further increases noise levels, the researchers said.

    The study was presented at a recent meeting of the Acoustical Society of America and will appear in an upcoming issue of the Journal of the Acoustical Society of America.

    There are few scientific studies of hospital noise and most have been conducted by hospital personnel, not acoustical engineers, the Hopkins researchers noted.

    "That told us this problem was important enough that the doctors and nurses were willing to step outside their comfort zone to make some noise measurements, even though they didn't always know how to analyze the data correctly," study co-author Ilene Busch-Vishniac said in a prepared statement.

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  2. After my experience, I had a hospital-based health care professional tell me: "Hospitals are now places to have procedures done. They are not places to recuperate or even rest."

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