Showing posts with label medicine. Show all posts
Showing posts with label medicine. Show all posts

Saturday, April 22, 2017

A Patient Perspective on Perfusion Chemotherapy


 I was diagnosed with Stage IV HPV+Squamous Throat and tongue cancer early May, and the tumor board recommended Chemo + Radiation.  I am a lifelong advanced level avocational symphonic choir singer with important concerts imminent and elected to forgo radiation as damage to the vocal instrument was certain and rehab to singing level was unlikely.

 I have lived a "healthy lifestyle" of the non-weirdo variety all my life, conventional (little fast food few sodas) diet, lots of exercise, plenty of sleep, etc. But living long enough puts you in the high cancer risk category no matter how you live as I have found out. Cancer is nature's way of telling you it is time to let the kids take over. Modern medicine is pretty good at dealing with cancer, and aside from cosmetic horrors most people who are otherwise healthy generally can deal with it easily. The cancer scare tactics are medical and alt fact marketing that can be ignored.
   
 The tumor board suggested a very aggressive and dangerous Perfusion Chemo as an alternative with the warning that it was potentially life threatening but would not damage the vocal instrument.  For me the risk/benefit equation of certain loss of singing ability vs a dangerous regimin of Chemo made the Chemo the best choice.  As a singer friend noted priorities are 1. Don't die if possible. 2. Keep singing, 3. Manage the cancer.  I was in excellent health, with a athlete's level of fitness, and decided I could deal with the aggressive Chemo and live through it to deal with any remaining cancer at a later date if necessary.  The tumor board assumed that later meant radiation and more Chemo. I did not.  See 2 above.

  But most important I didn't buy into the belief unfortunately promoted by the medical profession that Cancer is a terrible monster that must be eradicated from the patient at whatever cost.

  IT.  IS. NOT.

  Cancer like heart disease, strokes, and many other infirmities of age, are things that need medical attention and may affect life style, but if they are not fatal are issues that must be dealt with in the context of doing things that are important to the patient, even if lifestyle choices may affect the treatment and even the outcome of the disease.  These diseases of age are analagous to joint damage, broken bones even spinal injuries and concussions.  They may kill you outright, we all die someday, but if not life style changes to fix the problem should not be the primary form of treatment.  A friend of mine was paraplegic as a result of a ski accident on KT-22.  Instead of gently learning to use a wheelchair to avoid further damage to his injury he was organizing wheelie races in the rehab center.  Skiing might have killed him but it wasn't about to change his life style dead legs notwithstanding.

 It is important for the patient to understand all of the side effects of the chosen procedures and be prepared to enlist the help of the procedure specialists ahead of time in dealing with ER and attending physicians that may not be aware of some of the less common side effects.  One that I found out the hard way was that perfusion can totally shut down the GI system so that no food is processed even if it can be forced down.   Another is the tongue can be totally disabled by sores and thrush so that even liquid nutrition ingestion is difficult without aggressive treatment of the thrush. A popular Chinese folk medicine called Watermelon Frost in English was helpful once the GI system was able to process food. It is unknown to most physicians as it is not an officially recognized treatment of tongue sores.  Ask a Chinese friend who will probably have it at home or can get it for you at a Chinese ethnic market.  Professionals on the Oncology staff should know about this folk healer and suggest it as "maybe helpful." They have suggested Culturelle and L=Glutamine as "maybe helpful" and they have been "maybe very helpful."

Thursday, March 31, 2016

Artisanal Toast - Coping with Schizoaffective Disorder

http://www.psmag.com/health-and-behavior/toast-story-latest-artisanal-food-craze-72676


An interesting comment on how Millenial trends get started, but more important how one person dealt with serious mental health issues without much medical help. 

Thursday, February 26, 2009

Placebo Effect:: Believe in your Doctor

Placebo Effect: A Cure in the Mind: Scientific American: "The latest research has shown that the placebo effect does not always arise from a conscious belief in a drug. Alternatively, it may grow out of subconscious associations between recovery and the experience of being treated, from the pinch of a shot to a doctor’s white coat. Such subliminal conditioning can control bodily processes, including immune responses and the release of hormones. Meanwhile researchers have decoded some of the biology of placebo responses, demonstrating that they stem from active processes in the brain."

As Dr. Elizabeth Black told me one day after I bragged about how good my doctor was,
If you have faith in your doctor, everything she tells you to do works.
So far she has cured asthma, allergies, cancer, back pain that has been a problem all my life, shoulder pain, and fragile skin.

Certainly I take all the pills, do all the exercises, and slather on the vitamin E creme, and since Dr. Chun and Kaiser know everything, everything works. Probably other things I have forgotten as well. But thank you I will continue to believe in my doctor as the only thing in my life that I believe in. If some day I need a miracle cure my prayer will be an email to my doctor. It will work.