HEALTH WATCH: A cancer patients legacy to medical research

Less than two weeks before she died:Marybeth Scheinbaum,  a journalist to the end, dictated an “Intake Guide" that she believed might be useful for future cancer research.

She was diagnosed with Stage IV Pancreatic Cancer, metastasized to her liver in August of 2011. She underwent 11 consecutive months of chemotherapy. Returning from a Caribbean cruise to her son’s house in San Juan, Puerto Rico, on Sept 19, 2012 with the onset of eating, drinking, swallowing and speaking difficulty, she was still able to dictate to her husband Mark, a former professor at a University in Panama from research notes she had been making for several months. She felt that much of the “anecdotal” material discounted by many doctors and nurses might still be part of an important long term data base for future research. In her own case for more than a year nonspecific abdominal, back, digestive and other problems, and recurring thrush in her mouth and throat, led two of her primary care physicians to suggest Tums, and a “probiotic yoga diet.” It was an ultrasound technician in a pre-colonoscopy exam who first spotted “something” that warranted a first CT scan which led to a biopsy.
Marybeth died October 2, 2012 at Hospice of Houston, Texas, after being airlifted from San Juan. http//www.newsroompanama.com/component/search/?searchword=marybeth&ordering=&searchphrase=all#content 

One of her final wishes that the thoughts and ideas of a “non-medical” person might be taken under consideration by health care professionals designing and performing patient intake history interviews, and a heads up to patients and caregivers.

Here is Marybeth's last  journalistic contribution.

ENVIRONMENT

Have you ever worked at a site or location where 50 per cent or more of the workers developed any kind of cancer? What were the circumstances or details? Was this data ever confirmed by some actual study, or just your estimate from personal recollections?
Have you lived and worked in areas in which water has been treated with fluoride or other chemicals? Do you drink tap water? Bottled water? Are you loyal to a special brand of water? Do you have your own well water?
In your work or recreation have you spent substantial time in areas known to be high in ultra violet rays, such as high altitude mountain areas? Do you leave near or spend much time at beach areas?
Consider all towns, cities, countries, rural areas, even neighborhoods where you have lived, and/or worked—anywhere in the world– and take a few moments to described proximity to airports, industrial or chemical plants, busy highways or truck routes, fertilizer or pesticide proximity, and any other environmental factors which might have crossed your mind or caused you to worry about the safety of you or your family over the years. Include high power, broadcast, cell phone, transmission lines, and other power grid infrastructure as well as septic tanks, leech fields, sewage treatment plants, desalinization plants. (Please consider both areas where you have lived and areas where you only worked). If you have time to write this all down, include postal or Zip codes.
HEALTH and LIFESTYLE ISSUES
Regardless of your answers above. Think again. Think about your own health concerns and problems.
Describe your typical sun exposure? Have there been times in your work when you have been mostly outdoors? Have you been in high altitudes for long periods? What do you commonly do about sun screen application, wearing a hat, and other skin protective measures? Are you a frequent beach goer, skier, sun worshiper, tanning salon user, etc.? Do you favor certain brands of skin creams, lotions, makeup?
Have you ever been diagnosed with, or treated for any malignant or benign skin growths or disorders? Provide details.
In approximately what year did you start using a mobile telephone? At your most busy occupational periods how many hours per day were you on the cell phone? Did you use a Bluetooth or remote speaker phone or hands-free device for part or all of this time? Did you ever experience migraines or other health issues which you wondered about as possibly connected to cell phone use?
ADDICTIONS
Have you ever been a cigarette smoker? At what age did you start? At what age did you stop smoking, if you did? How many packs a day did you smoke at your peak? What particular brand or brands?
If you are or were a cigar or pipe smoker, describe your smoking habits?
If you are or were a marijuana smoker, describe your smoking habits?
In your discussion of brands or brand loyalty, take a few seconds to describe if you were particularly addicted to a style such as 100s or King Size, or filters, or menthol, and even if you refused to smoke anything but a certain favorite brand or type of cigarette?
Whether or not you have a strong opinion on what is called “secondhand smoke,” if it applies, tell us about any family member(s) who smoked in your household, and for how many years, and how much they smoked, even if you are a non-smoker.
Whether or not you did or still smoke tobacco, did you or do you use so-called “smokeless” tobacco products such as chewing tobacco or snuff? Describe the extent of addiction of any and any health problems which have arisen?
In general, describe any actual diagnoses or just personal feelings you might have about how smoking has impacted your health. (For example you might have been told that years of smoking have given you a “husky” voice, or you cough more frequently than you did when you were younger.)

ALCOHOL USE
Describe what alcoholic beverages you have typically enjoyed socially or because of addiction over the years, and do you make any distinction between “social” drinking and addictive alcoholic behavior?
Have you ever been treated for, or participated in a self-help group or program because of your drinking? If not, have there been times when you perhaps thought about it?
Even if you only have an occasional beer with friends, or wine at dinner, are there favorite or usual “brands” that you have enjoyed the most and patronized over the years. For example you might like a cold beer of any type from time to time, but mostly for 30 or 40 years you prefer a Bud or Miller Lite, etc…
Going back to alcoholic consumption, now be a bit more detailed about how many glasses, cocktails, cans or bottles of beer you would consume in a typical day or week?
Have you ever been drunk on the job? Have you been offered treatment for alcoholism on the job? Have you been fired for drinking? Have you ever been arrested for an alcohol related motor vehicle or other offense? Were there ever times you felt lucky that you were not stopped while driving drunk?
RECREATIONAL DRUGS AND NARCOTICS go in and out of favor over the years. But as part of your overall background, describe cocaine, heroin, meth, acid, pot or other controlled substance use in your history, the years you started and stopped if you have, and any health benefits or dangers you believe are derived from this use. Be specific if possible regarding years, dosage, delivery systems, etc.
Did you ever joke about being “addicted to food?” Have you dealt with obesity, diet plans, and bariatric surgical procedures? Are carbohydrates, fried foods, and “junk food” a problem for you, and do you actually feel you are struggling at times to “eat healthy?”
HEREDITY
Where were your parents and grandparents born?
Where have you lived for ten years or longer at any time in your life?
If you know, where did your parents and grandparents live for more than ten years? (List all locations with spans of ten years or more)
Detail, if you can, the occupation(s) of grandparents, parents, and yourself.
What if any illnesses, allergies, diseases did they have, or have you had until now?
Have you had any food allergies that were detected or noticed later in your life?
PERSONAL HEALTH HISTORY
Lots of things about our personal health history often involve parents, or siblings telling us about Illnesses and allergies and accidents in our younger years. So, it can be tough to relate specific information about medical procedures, prescription drugs, etc. from many, many years ago. But just do your best, and again, if you feel comfortable writing down your answers, something inconsequential to you could be important to some researcher or practitioner in the future.
Have you had any or many dental health issues? Any dental issues which have or had gone neglected for a long time? Any premedication (prophylactic medication) before dental procedures, or were you ever told you probably should have had some premedication? Have there been any ongoing or unresolved dental or dental hygiene issues over the years, or still existing today? Have financial considerations and/or insurance issues kept you from keeping up with dental work you know you need?
Have you been wearing dental prosthetics (false teeth, full or partial), and have you had lesions, or mouth problems? Any bad reactions to your dental adhesive? Any allergic reactions or instructions to change the brand or type of dental product you had been using to clean and/or fasten your teeth?
Any abscesses either treated or untreated? Any untreated for long periods causing further infections? Any complications of root canal, gum, or bridgework?
Any high fevers or recurring fevers which you were told were connected with dental problems?
Have you had cavities filled with mercury? Any mercury taken out of your teeth and replaced with other metals? Any reactions to any amalgams, metals, temporary or permanent fillings or crowns to the best of your memory?
What is your usual brand and type (roll on? Stick? Spray?) Of anti per spirant or underarm deodorant? How often per day or week do you use it? Would you say you just dab or spray a tiny amount, or slather your armpits to cover usual sweaty areas? If using roll on or sticks do you just quickly grind it into your armpit? Do you ever experience any swellings or rash in the area of use of these products, or tenderness in the armpit area?
Have you ever been diagnosed, and/or treated for a previous cancer? What is the status, outcome, or ongoing situation? Detail where and when you were treated. Have financial or insurance issues kept you from the follow-up appointments you know you should schedule?
Tell us if you were ever diagnosed with specific fungus diseases, tropical diseases, viral infections or skin disorders including constant or easy bruising. Have you ever renewed a doctor’s prescription two or more times with the feeling that there has been no improvement in your original condition? Describe the circumstances.
Have you ever had recurring “thrush” or a chalky white film or feeling in your mouth and throat, and not have it resolved by over the counter remedies? Did you see a doctor? What happened next?
EXERCISE AND PHYSICAL ACTIVITY might mean organized team sports in school, a walk in the park each day, jogging, or just climbing stairs or doing yard work. Reflect on past and present physical activity, and described the extent of your typical daily and weekly activity and how it might have changed. Don’t forget to include current or past job related physical work and assignments.
Do you participate in a regular fitness club or program or have you in the past? If you stopped describe why, perhaps there were financial, geographic or physical issues? Perhaps you stopped and then started again?
With the same careful reflection as you did above regarding exercise, talk about the STRESS in your life, past, present, and perhaps future, and if there have been manifestations of physical or even psychological nature from this stress? Think about home and family life, and also work and social situations.
MORE ON NUTRITION
In many of the areas above issues about food and nutrition and eating habits are involved. This section gives you a chance to be more specific about some things. There are no time restraints on you. Think about things you want to talk about, or if you want to write some down and talk about them later, that is ok as well.

Describe WEIGHT STEADINESS OR FLUCTUATION over the years, and any very recent changes in the previous months or years? Have they concerned you enough to seek a medical opinion? Have they concerned you enough for you to change any dietary or lifestyle habits? Describe them?
What are the major kinds of food you eat, and like to eat most? For example some people love lots of fish? Some people eat fried foods almost every day? Some people always have the same fast food lunch at the same fast food restaurant? Some people never eat red meat. Some people don’t use real butter. Tell us your habits include soda (see below), coffee, tea, juices, etc.
What vitamins, minerals, herbs or other supplements do you take or have you taken? How much dosage, and for how many years?
CARBONATED DRINKS …now let’s get specific regarding Coke, Pepsi, Dr. Pepper, Sprite and other name brand sodas. What do you drink regularly and how much? If you drink diet or sugar free, tell us. If you only drink generic or store brands, we need to know. If you primarily pump your own drinks in a convenience store, let us know the typical size of your drink and how many drinks you have each day?
How many packets of sugar substitute or sweetener do you use each day on average, and what kind?
If you drink fruit punches and fruit drinks, describe how many and how often, the same goes for vegetable drinks and cocktail mixes.

SYMPTOMS
What were the first signs leading you to investigate your pain or problem which then resulted in the eventual diagnosis of cancer? Please be very detailed as to time, place, circumstances, and how you felt.
Please tell us about things such as the following, but do not limit yourself to these items….conditions such as….
ABDOMINAL PAIN
ITCHING
DIARRHEA
CONSTIPATION
THRUSH OR DIFFICULTY CHEWING OR SWALLOWING
LOSS OF TASTE
BURPING, BELCHING, AND PASSING GAS
BACK PAIN OR GENERAL BACK ACHE
YEAST INFECTIONS
CHANGE IN SCHEDULE OR INTENSITY OF MENSTRUAL CYCLE
MIGRAINE HEADACHES OR INCREASED IN ANY HEADACHE
JOINT AND/OR MUSCLE ACHES AND PAIN
DIFFICULTY DOING USUALLY ROUTINE TASKS OR EXERCISE
SLEEPING MORE THAN USUAL
GENERAL LETHARGY Talk about or list any other items specific to your experience, one never knows what a small issue you experienced might actually be critically important to a line of research in the future.

SUMMARY: These intake questions might be of help to health care professionals already doing intake, initial consultations by health care professionals with cancer patients, or as a check list and written exercise for any cancer or other patient going to a new doctor, clinic or hospital. It will not replace the usual clipboard forms or short form intake updates each visit. You will still be using information about diseases, surgical history, changes in sleeping and eating habits etc. But as Dr. Stephen Curley, MD, prof. of gastric surgery at MD Anderson told me on my first visit when I received the news that my tumor on the tail of my pancreas was inoperable, there is lots of information doctors still don’t know. When a family member said, “Well, Marybeth still smokes cigarettes and has been for 50 years, and 67 per cent of all pancreatic cancer patients are smokers, so why should we be surprised at her diagnosis” his answer perhaps sparked my interest in this intake guide. Dr. Curley commented, “OK, but we are in a country where in recent years cigarette smoking has been declining, and the incidence of Pancreatic Cancer is increasing, so how do we explain the other 33 per cent of people—many with excellent diet and health habits, who experience this disease?”—mbs, dictated 19 Sept 2012, Sabana Seca, Puerto Rico.