Staying close to home

Why travel for medical care? I am not talking about going to another country, but do you really need to go to the big city when you can stay local? Apparently not. This article is an interview with a doctor who is leaving one hospital to lead another where he talks about keeping health care costs down and using local hospitals.

'People use the big tertiary hospitals because the technology is impressive. There are things called gamma knives that astonish me, but most people don’t need that, thank God. Most people need good care, a good caring doctor, a procedure that works and excellent follow-up. Most of those things can happen in a community hospital at much less cost.'

A big fancy hospital with famous patients - senators, movie stars, etc - have higher overhead because all their fancy equipment costs a lot. But for the majority of us, going to the local hospital probably has everything you need. The big fancy hospitals with every technological gizmo invented (and approved by the FDA) have big fancy bills with them.

I go to a nice regional hospital. Or is it a community hospital - I am not entirely sure what the difference is? Its not huge, but its not tiny. Actually it keeps expanding. When I first went there in 1981, it had two wings - east and west. Two renovations/expansions later it has four wings - east, central, west, and southeast. But it is plenty big enough for me. They can offer basically everything I might ever need. If I every get any more cancer cooties (note the technical term) diagnosed in my body, I might want to go to a cancer hospital - Dana Farber is the closest one - for a second opinion.

But frankly I go to the hospital often enough that by driving the extra two miles in the other direction into downtown Boston, my driving time to each appointment would be triple or more the ten minutes it takes me now. Plus I would have add time for finding the rarest of rare in Boston - a parking space for less than $20.

I am very happy with my care at this point. I think my only complaint is that I get so much of it. I would be happier if I was healthier and didn't have to go there as much.

Speaking of medical records

I didn't realize the government was pushing all this technology on to hospitals and doctors but they are. They are spending billions of stimulus dollars to get away from pen and paper. They have a long way to go, only 30% of doctors are using electronic records. Apparently the system works for hospitals but not independent practices. Hospitals can afford to go electronic. Doctors who are independent it is a bigger step - even with stimulus money.

Where I am treated, starting a year or so ago, they went electronic. First they had two years worth of medical records put into the system. Then everything going forward is electronic. You are never greeted by a nurse with a big medical file (mine was getting big enough to get require a hand cart to lug around) but now they carry a laptop. In addition, now they are working backwards to get earlier records into the system.

I think this is all great. They can see what is going on with a patient much easier. They can pull up test results and even view images from tests right away. I realize that proportionally it is a long of work for the independent practitioner but in the long run, patients will get better care. Patients will no longer have to get medical records back and forth from different places they are treated. I know many people who get different treatments in different places and then they have to get reports back and forth to different places. I have enough problems getting places without having to remember anything.

HOWEVER (yes a big fat pause here), the biggest push for these electronic records are the insurance companies... They claim it is because it saves on unnecessary tests and hospitalizations, etc as the information is shared between doctors. Medicare and Medicaid are going to require doctors to report electronically. But what about regular health insurance companies - they should not have access to the information.

This is the scary part: By mining its patient data, Kaiser, for example, was first to identify a link between the pain-relief drug Vioxx and a higher risk of heart failure, well before Merck pulled the drug off the market in 2004.

I don't think I mind that the information is electronic so we aren't buried in paper ( see my post about this a few days ago) but I think I do think I mind insurance companies accessing it even if it isn't tied to a patient's name. So Kaiser dug through the data and found out that people who took Vioxx had a higher risk of heart failure, but what if they started going through the data and saying things like 'people who are on this drug are more likely to die, so we don't want to insure them any more'. So if you are on something like Tamoxifen, that means you had breast cancer. Or if you are on Avastin for a brain tumor, what if they didn't want to insure you? Keep the insurance companies away from medical records.

I think in the long run, paper is expensive and a vertical way to keep and use medical records. Insurance companies are not supposed to know what is wrong with you but somethings are pretty obvious when they pay bills for brain MRIs or EKGs. But should they be allowed to mine this data to make decisions about coverage? Or make any decisions on care? This is the scary part. I guess I just don't trust them any more. They aren't doctors, they are out for the bottom line. Its not the patients that matter, its the money.

The more ailments, the more doctors, does this equal better care?

I have many ailments which are followed by doctors. Currently two previous cancers, back problems, depression/anxiety issues, and my stupid sprained ankle. I also have issues which aren't being really treated but still interfere with my life - tennis elbow and a partially torn ACL. As a result I have these doctors: primary care, medical oncologist, radiation oncologist, breast surgeon, ankle surgeon, endocrinologist, psychologist, psychiatrist, and a back pain doctor. I did have a knee surgeon who I could go back to if I really want more surgery - but I have had enough thankyouverymuch. I can also go back to the elbow doctor if my tennis elbow continues to be painful. All these doctors are in the same hospital and access my same electronic medical records.

But I feel my care is very vertical. I am switching to a new primary care doctor in hopes that it will get pulled together. My psychiatrist put me on an antidepressant. My back pain doctor put me on a pain med that works in the same way as the antidepressant so I didn't need it any more. Then my back pain doctor put me on a different pain med but that left me without an antidepressant until I called my psychiatrist and got back into see her. Each doctor tries their best in their area of care to take care of me. But they don't always take into account the rest of me.

Apparently I am not alone. 25% of Americans suffer from two or more chronic conditions. Chronic conditions are ones which require continuing medical care. Cancer is now treated as a chronic condition. By this definition, back issues are also a chronic condition. (I don't have any of the other medical conditions they list but they are plenty for me.)

This sums up my medical care issues:

Because of the way medicine is typically practiced these days, people with multiple chronic diseases commonly receive disjointed, often conflicting care. That can lead to preventable hospitalizations and a host of avoidable complications, adverse reactions to treatment, and duplication of expensive, sometimes hazardous tests.

And this is another reality for me:

Dr. A may prescribe something for a heart problem that reacts badly with what Dr. B prescribed for the same patient’s asthma or what Dr. C prescribed for arthritis or osteoporosis.

So as a patient I need to keep on top of what is prescribed by my doctors. More doctors does not equal better care.

Seeing the other side of cancer

Maybe it should be required training for all those who treat people with cancer, to go through it themselves. There is no graduation or certificate or merit badge for going through cancer and its treatment and the ensuing ups and downs.

I recently attended a 'Cancer People Play Group' at its first meeting. This is a group for the lucky ones of us who are through treatment and still coping with the little 'what if' that niggles the back of your brain when you wake up in the middle of the night. (Its a Play Group not a support group because support groups are for sick people and its not for survivors but for cancer people because we don't like the label of survivor. Its open for new members - leave me a comment if you are interested.) Now that I have gone completely off my original topic with my self serving push for the play group, I will drag myself back on topic. At the play group, we all agreed that there is no graduation and diploma that comes with cancer - you get stuck in second grade for life.

But maybe doctors, nurses, and others who treat us, would benefit from the experience. A doctor at Memorial Sloan Kettering recently wrote about his feelings when it was his wife who was the cancer patient. My husband married me knowing I had had cancer once. Then he held my hand, changed bandages, squeezed drains, and passed me the kleenex through my second diagnosis. Then he became the cancer patient.

Last week when he had his first colonoscopy after his diagnosis, we did talk a little about how different it is on the other side of the table. If your spouse has cancer, you are holding their hand on the little cancer roller coaster from hell, but you get to get off every once in a while and watch them take a few laps with out your support. If you have cancer, you are stuck on the roller coaster for life. When I go to the hospital for my appointments, I can usually hang in there - check in, the nurse takes me to the little room, change into the lovely gown, and I talk to the doctor about me and my issues. Then I go with my husband and the doctor isn't concerned about me but about him. Sometimes I never even get out of the waiting room. Sometimes just that part is stressful.

Medical professionals see a lot of cancer - even if they are not treating a cancer issue - cancer people sprain ankles too - but they all see the little notes on the bottom of the files - history of 'fill in the blank' carcinoma.
But all of a sudden when they are the one coping - I would imagine its very different. I am not sure any training can prepare you for the real thing.

I don't know who you people are

Cancer coaches are a closed topic on my blog. My blog is about me and what I want to write about. It is my opinion. Feel free to disagree. But do it nicely. And identify yourselves - providing a google profile which was set up the day you complained about my blog. I call you a spammer. And please don't complain about that either because I'm not interested. The line between discussion and spam is fine. You are crossing it. I welcome discourse on my blog. I don't welcome spam and other idiots. You spam me and I'll call you an idiot. I am in a bad mood. I had a bad day/week. You are in my range of vision. Give it a rest or I can block you as well. And I have too many issues in my life to put up with your shit. - I also have been reading CSL for years.

Have a wonderful spam free day!

Rock, paper, scissors

Rock is for the granite curb I hit yesterday and removed the hubcap on the car (but the tire does not seem flat) and sooner or later the hubcap will be reattached to the car.

Paper is for the paper the insurance company insists on drowning us in. I know lots is done electronically now. My doctor never gives me written prescriptions any more. They are sent electronically to the pharmacy which goes on line is linked to the insurance company regarding coverage and payment. Now they have invented this evil system of preapprovals. THAT MUST BE DONE ON PAPER.

On Feb 4, I saw my doctor and asked for a refill on one of my prescriptions. I called the pharmacy last week to see if they had it and could fill it so I could pick it. Apparently on Feb 4 when the doctor sent it over, it was too early to be filled so it was put on hold. But now when I need it, it requires preapproval from the insurance company. So the pharmacy called the doctor who must get a form from the insurance company and fill it out and mail or fax it in. After approval the insurance company will mail or fax it back to the doctor who must get it to the pharmacy. This a PAPER system by companies who communicate electronically all the time. The insurance company requires it be done on PAPER. And it takes 7-10 days. And no it couldn't have been started when the insurance couldn't fill the prescription on the 4th because it was too early. That would have been logical.

There is a giant technological gap here - job opportunity here? - that could be filled by a few lines of code here and there and simplify everything.

The scissors is actually the technology behind this new app for your smart phone - diagnose cancer with 96% accurancy... but don't get too happy here - it needs more tests.

Pushing drugs, doing drugs, and feeling better

What a title - may send the DEA after me - but my drugs are all legal. Anyway, I was driving around yesterday (not aimlessly but on my way to a doctor appointment) thinking about my current medications and how they are balanced around each other to keep me pain free, cancer free, and semi-sane/normal.

When I first started down this delightful medical path, I didn't want drugs for anything. I was a advil every six months or so if needed girl, other than the pesky thyroid pills because of that other cancer diagnosis. Then the surgeries caused pain which did go away, but cancer causes stress, chemotherapy causes side effects, blah, blah, blah. I have no idea of how many rounds of antibiotics or other pills I have ingested. After surgery or procedure, they give you a prescription for pain meds that I take until I don't need them any more.

Every six months or so here they have a 'turn in your old prescriptions day' around here. I dutifully go through my little bottles and find the ones I stopped taking a while ago and there is no chance that I will need them again because they expired group and put them in a bag and bring them in. A much better solution than flushing or putting them in the trash. They get destroyed in some environmentally friendly way. The sad thing is I can produce a bag of expired and useless medications every six months.

My doctors put me on medications and then take me off them or tell me to take these until this time and then take these and here are a few extra so you don't run out. Then another doctor says if you are taking this, you shouldn't take that, take these instead. They aren't drug pushers. They are trying to balance my medications. Unfortunately the balance is complicated in that back pain drugs can also work as anti depressants which causes two doctors to battle over which is which. Treating back pain has a quicker up time than treating depression issues. You canjust think of me as the ping pong ball going back and forth, trying to feel better. Currently my back is slightly better, but my tennis elbow is speaking up and my depression meds aren't balanced. Other than that I feel fine. Did I mention how my ankle feels these days?

Specialists vs. Generalists

Back in the day, there was a town doctor who was backed up by a single specialist - the town barber who would specialize in dentistry with a pair of pliers if needed. Then doctors started specializing more and more and some how we are no in the time period where you have a primary care physician who seems to be really good at sending you to a specialist.

Sometimes if I go to my primary care physician, I question why I end up with three appointments with specialists as a result. I mean do I need to go to a gynecologist if the primary care could do a pelvic exam? Or am I special and need more doctors? Actually unless there is a problem I usually stay with my primary care for that. But some how I ended up with a GI doctor in my 20's - lots of tests resulted in a big fat nothing. 20 years later, I ended up with a hiatal hernia among other diagnosis. But I digress.

Wouldn't it be cool to only have ONE doctor to go to for almost every thing? That way they might be able to pick your photo out of a police lineup if the need arose. I see my specialists more often than my primary care. In fact I am switching to a new primary care this year because the old one didn't know who I was after seeing her for 10 years. From the patient's point of view, it would be really cool to have a doctor who knew you and your issues.

But there can be benefits in having specialists in some areas. I am all for having surgeons who specialize in surgery. Please don't cut me open unless you have done this over 1000 times, thanks! Now it turns out radiologists are far more accurate in reading scans if they have read lots of them. Okay, you can't read my scans unless you have been doing this a long time. So unless you have experience, don't touch my stuff! If you don't have experience go away - no experience to be learned on my body.

This goes back to the conundrum - experience required but if you don't have experience no one will hire you so you can't get experience. But its not my problem on how you can't get a job without experience and no one will hire you without experience. But wait, I am getting off topic.

I want a personal general doctor to take care of me and make sure I get care but I only will have specialists for things like surgery, radiology, gynecology, oncology, radiation oncology, dentist, periodontist, psychiatry, psychology, ... Crap, I guess I have lots of specialists. Maybe I'll be happy with a primary care doctor who gives me primary care.

Repeat after me: Change is coming

If we fight change, we make it worse. We have to accept change is for the good - nothing was wrong before but maybe times have changed and we need to adapt to survive. This is similar to Darwin's theory - animals needed to adapt to survive.

The health care system is changing - I don't care what your politics are - but change is coming. Doctors will have different pay structure. The focus is changing to accountability and look at the overall health of the patient. It won't be about volume of patients and procedures that are permitted by the insurance companies.

Why is this happening?

- The current model isn't working. Insurance companies are telling doctors what to do and patients are going broke paying for their treatments or dying because they cant

- We are faced with an aging population and the baby boomers are all getting old at the same time. And life expectancy increased so we have more people living longer but with bad health.

- Insurance premiums are sky rocketing, squeezing every employer in the country who provides insurance. More costs are being pushed onto the employees, but unions are fighting this. They have historically been able to provide wage and benefit negotiations for the employees. And now that ability is being pressured as legislators attempt to change laws for flexibility.

This isn't about union busting. Labor unions have done amazing things over the years. They started to create safe working conditions for employees - think sweat shops. Laws were changed to back safe working conditions. Minimum wage requirements came along as well. Now unions help negotiate for their members on wage and benefit issues. But these benefits can be expensive.

Times are different now. People are doing more with less. Employers are doing more with less. Technology proportionally costs significantly less than 20 years ago. Health insurance proportionally costs significantly more. Employers could control the technology costs by buying fewer computers for their employees or spreading the purchase out over time. With health insurance, they are given a number they must meet or offer reduced benefits.

If an employer can't afford to pay for employees because the total cost of their salary and benefits is too high, they will get rid of employees. If you fight too hard against change, you may find yourself out of a job. When an employer says either a benefit cut or a head count cut, which would you prefer? Would you want a job where you earn less or no job?

For all of you who think that what is going on is union busting, its called change. If you fight it, things will be worse overall.

Secrets of the health insurance industry

A former health insurance industry PR spokesperson, Wendell Potter, has written a book called 'Deadly Spin' - an inside view of the health insurance industry. It seems to be a book that should be required reading for anyone who believes the insurance industry isn't out for the bottom line. I will see about getting myself a copy...

I like his points:

- Don't read anything written by the marketing department at a health insurance company. I'm in marketing and I can tell you how anything can be spun anyway you want. Go use the government website www.healthcare.gov to figure out health insurance.

- All quoted rates will be for young healthy people. I can imagine what I would be quoted - two cancer diagnoses, chronic back issues, 8 surgeries to date, diabetes and rheumatoid in the family. They would just give me the $100,000/year premium and accept the fact that they will lose money on me.

- "Consumer driven" health insurance is a fancy term for 'let the consumers pay for it so the insurance companies don't have to'.

- Appeal every denied claim to the top of the food chain.

- And insurance companies have spent lots of money on influencing the people that matter - legislators, etc - to get things their way.

Maybe we should send off the insurance company executives who only care about their own bottom lines instead of the health of the American public for an extended vacation in some place far away so we can focus on keeping people health.

Hospital wanderings

Yesterday my husband was the lucky and privileged one and got to 'enjoy' a colonoscopy. We had several discussions in the previous days about the 17,000 foot camera (see Dave Barry's thoughts on this fun procedure to learn more).I got stuck wandering the halls of the hospital waiting for him.

Well we did have a plan. He was told to check in at 7:15 am which was actually a good time because he couldn't eat or drink anything before and that makes him crabby. So Mr-I-Can-Never-Be-Late got us there at 6:55 am. He checked in and we took a seat. They got him at 7:40 am and told me to call in an hour and a half. I followed our plan by going to have breakfast in the cafeteria and getting him a snack for the drive home - parmesan bagel and bottle of water. My breakfast was egg beater omelet with cheddar cheese - which begs the question if you eat egg beaters but then fill them up with cheese is it worth the effort or should you just have regular eggs with no cheese? But it was a hospital with portion control so it only had a tiny bit of cheese and I felt virtuous.

I went back up to the waiting area and at the end of the Ellen Show opening, I called the recovery area and was told he was still in the procedure room and to call again in half an hour. Then I started to worry - why should this take so long? Last year's colonoscopy had BAD (read 'malignant') results which ended in surgery, blah, blah, blah. I didn't want to just sit there, even though it would mean missing parts of the Ellen Show, so I went off to the blood lab and got next month's blood tests done early. The blood lab,or should I say 'Phlebotomy' is very efficient as they use the deli system - check in and get a number - so I was done in 10 minutes.

I went back up stairs and started walking around. I skipped the inpatient areas but looked at the different waiting areas on the floor and played the game - can I remember the name of the doctor I had in that department? Some of them I could. Finally I made myself go back and sit down for five more minutes before calling again - caught a little more of the Ellen show. Good news - he would be out in 5 minutes. It turned out the nurse who brought him out is the niece of a good friend of mine. She recognized me and we chatted. How was his test???? Fine. It took so long because his check in was changed to 8:15 am and we never got that message.

We were out of there with the directions - take it easy, no significant decisions, no alcohol - and away we went. Next year he gets to have a sigmoidoscopy instead of a full colonoscopy - and repeat annually for a few more years before another colonoscopy.

Please pay attention here

This is how to help a sick friend. If anything positive can come out of the horrible shooting in AZ, this list is it. I will summarize:

1. Know your friend
2. Make specific offers
3. Give the right gift
4. Call at night
5. Call weeks later.

This list is long over due. I can't tell you the number of things that have greatly upset me through my medical ups and downs.

- The 'friend' that came to visit unannounced at 8am on the morning after major abdominal surgery where I was expected to be bedridden for 2 days and an inpatient for 5 days. Even though I had requested no visitors other than family. She was in the hospital and thought she might stop by.

- The 'friend' who threw a party and introduced all the cancer people to each other so that we could bond. I felt like I was at the frat party at the beginning of 'Animal House' - as one of the losers.

- The 'friends' who expect me to reiterate all my latest health issues in detail every time I see them.

- The 'friends' who expect me to talk about knowing people who are dying from/have died from cancer and what I knew about their last days.

- The 'friend' who never stopped asking 'is that a wig or your real hair?'

- The people I never hear from.

My point is when people are sick, they aren't as good as reaching out to ask for things because they are too wrapped up in their own medical life lemons. And their needs have changed, their lives are different right now and they can't do the things they used to. Please read the article and think about how you can help others.

Oopsie!

Apparently sometimes when I blog, some people disagree with me. Frankly I don't care if people disagree with me. Here's why:

1. Its my blog and I can write what I want
2. If some one bothers to complain about what I said, I am just happy they read it.

But now here a note to Lori who didn't like my Cancer Coach post and leaves me no way to reply to her directly.

Dear Lori:

I am sorry you didn't agree with me. While you would like to been able to have a cancer coach to help you as a two time breast cancer survivor, you now have as much training and experience as these other cancer coaches are promoting themselves. Or even twice as much. They are often claiming that since they have been through the experience they are able to offer their services. And how does going through cancer a time or two give you experience to help others? Every cancer is different. What is a standard treatment protocol varies from medical center to medical center. What is current now, may be out of date in six months. It takes extensive training and research to keep up on what is up to date.

You compare my statements to saying that I shouldn't pay my oncologists. I don't understand this - oncologists, other medical professionals, and therapists have had clear training and experience and are certified in their areas. Is there a degree in cancer coaching with a certification that I overlooked somewhere?

I don't argue life coaches can provide help to others but life coaches are different than cancer coaches. A life coach helps people figure out what they want to do with their lives usually in their professional life. They often have numerous suggested resources to which they can refer people and help figure out what they want to do. A lot of their work involves open discussions with the client on options and requirements and help them sort out what would be best for them.

You end by saying 'My hope is that perhaps some of you might be a little more open minded about this topic. True coaches are very, very motivated by helping people. There's no reason that they shouldn't be paid for their time and skills.'

Tell me what their skills are based on as cancer coaches and I might pay someone. If having cancer is training, then I should be ready to open a new business. Even if a life coach gets cancer, how are they able to become a cancer coach? A cancer diagnosis is not a school with a diploma.

Maybe I am a little overly sensitive on the subject and there may be some well intentioned people out there but there are lots more slimy snake oil salesmen.

But its my blog and I can write what I want. You will also note, you were out voted 4 to 1 on opinions.

But thanks for reading anyway. Caroline

A TV station we need - or proof that my mind is gone

We spend too much time with screens in front of us - tv, smart phone, laptop, desktop, net book, etc.We are a world of couch potatoes. But there is a tv channel we need. The Cancer Channel. Think of the shows:

- How to manage your medical team - including finding and firing doctors, choosing treatment locations, etc.
- Procedures - each episode features a different one and ends with a deciphering of the results and what it means
- Selecting medical facilities - single vs. double rooms, private bathrooms and showers for in patients, parking logistics, time and distance between you and the hospital, food quality - cafeteria vs. in patient, gift shop selection of books and magazines, in room television, internet, cell phone, and wifi use. These are the important things. If nauseous in chemo, the last thing you want to do is spend 2 hours in traffic to get there.
- Chemotherapy - types, whole dose vs. split doses, side effects, hair loss, neutropenia, and the ever popular nausea & vomiting, etc. Also, things to do to pass time while hooked up to the infusion - Cosmos anyone?
- Radiation - or how to lose any remaining sense of modesty as they permanently scar your body internally and externally.
- Clinical trials for patients - how to find one, how to figure out if one is right for you, benefits and issues with enrolling in them - basically is there a chance in hell it will help you or not - and how to make sure you get the new treatment and not the old one (that would be skewing the data but what the heck we only get one choice).
- Deciphering clinical trial results - and this must be done without the use of the phrase 'additional research will be required to provide an answer' in any episode
- Eating during treatment - preparing yummy food - the only requirement is to eat things that seem like they will stay in your digestive system for the appropriate amount of time
- Tumors - how to make them your friends and not your enemies
- Creating, evaluating, and executing bucket list items - if you want to climb Mt Everest, jump out of a perfectly good airplane or off a nice safe bridge, get moving.
- Looking good in treatment - not just ACS's Look Good Feel Better class but stylizing with lymphedema sleeves, chemo pumps, and other medical devices. Let's not forget covering and exposing surgical scars - connect the dots anyone?
- Living wills - its all about you, what do you want - 'Go on, baby, and pull that plug!' vs. 'For as long as possible' - your choice but you gotta make it before someone decides for you.
- Regular wills - how to plan the biggest bash of your life and you don't get to go, casket or cremation, and where to be put. This last one is important - one of my grandfathers refused to be buried near the relatives he was mad at when he died. Also, how to make sure the relatives you don't like don't get your stuff or only get the stuff they think is ugly.
- Coping with stupid people - you know the ones who say 'is that a wig?', 'are you going to die?', or just point and whisper from across the room and no longer talk to you in case its catching (just cough in their direction).

There is so much more as well. This could be great. My requirements there that all hosts or whatever they all show a sense of humor at all times and are honest about everything. Humor is key. One more requirement - no use of the S-word - its becoming politically incorrect in many circles.

Maybe this is really telling me that A: I spend too much time watching TV, B: I spend too much time thinking about cancer, and C: My mind is really gone.

The pain business

I was talking to my mother yesterday. She knows about pain as she has had Rheumatoid since 1989, I have only had back pain for 2 years so she is a little bit ahead of me. We aren't medical people at all. We have very useful liberal arts degrees from good colleges. We are experienced patients who have heard to much 'with your condition, blah, blah, blah..." from doctors and know the best back way to the hospital which goes by the cheap full serve gas station and never need to look at the hospital directory to know which way to head for our next appointments.

She told me about studies on pain and how little is known. We were talking about it. A little pinch can hurt a lot - ask any parent who's ear lobe has been twisted by an energetic toddler - but not mean much at all. The child lets go and the pain goes away. But a big tumor can be painless and kill you off with no signs. So pain is not relatively.

Pain is not local either. Just because my hips hurt doesn't have anything to do with my hips. Its referred pain from my SI joints. Basically pain radiates and moves around and doesn't always tell you where the pain starts.

Little people suffer as much pain as big people. I saw something recently about until the 1960's babies were not given much pain medication as it was assumed that they didn't feel as much pain as adults because they were so small. My father talks about leg surgeries in the 1930's where he would wake up post op in a ward full of screaming children who weren't given any post op pain meds.

My mother and I can compare pain meds. I am still transitioning from my medication changes last week. I had a BAD week last week. This week has started a little better but my leg and foot cramps were back last night. A banana eaten at 3 am seemed to help but now they are back. I am not sure if these are new or simply a side effect from my Femara and were disguised by my other pain meds. Either way, I have a topic for my oncologist in a few weeks if they continue. These days I travel with my little pharmacy as I go through the transition.

The pain business is a difficult one. A patient says I hurt here and the doctor looks at another place. The nurse asks 'how is your pain level on a scale of 1-10?' and the patient replies 'its a 15'. Um, you are not off scale,your scale is distorted. I think of pain level 10 as being the one where you are lying completely still because any little move sets off a wall of pain through my back. If that was a 10, a 15 means I would be unconscious. I think I am familiar with all the levels from 1-10 on my scale. But how does that translate to the doctor's scale? Its not like taking your temperature - your pain levels is a 3.5 today. Its subjective. Its a guess. In the pain business that is what they are treating - guesstimates. I am glad I am on the patient end of this one instead of the doctor's side who is trying to translate it.

And then there was the migraine that tried to sneak up on me yesterday... I was cooking dinner when it started so I headed up for our bedroom for darkness and quiet and drank water. It is lurking a little today but I never got its full effects. Yet. I never get migraines. I have no migraine meds. I just make lists for my next doctor's visit. Pain is complicated.

Just when you control it in one body part, it shows up in another one. How did I get tennis elbow while on pain meds and anti-inflammatories - the most common initial treatments for it? That meant I got to skip the part of the diagnosis which said take anti inflammatories and pain meds for a few weeks and go straight to the cortisone injection, PT, and wrist brace.

The pain business is complicated. I'll just stick with being a patient.

A coordination test

Some years back, I read some study (because there are billions of them and if you believe one, another will come along to refute it) on the benefits of walking and talking to improve health and destress. But you have to meet a few requirements:

- You have to have someone to go for a walk with you.
- You have to be able to talk
- You have to be able to talk and walk at the same time
- You have to have a place to go for a walk.

The study I saw was on patients or caregivers of a bunch of sick people. There was one group who walked regularly, another who talked to their friends about their issues, and the third group who talked to their friends while they walked together. The third group was by far the healthiest. The idea was that while getting some exercise while they verbalized their stresses provided both a physical relaxation and a mental stress relief. (As far as I know, they did not test a group of people on their skills in walking and talking and chewing gum because that might have biased the sample to include only coordinated people.)

I prove my point in that there was just a NEW study on 'Healing through storytelling' where people with high blood pressure managed to reduce their blood pressure numbers just through story telling. So my question is what if they did storytelling and walking?

I don't do storytelling, I blog and then go for a walk or the gym. I am hoping for the same result - destress, reduced flab, lower blood pressure. I won't add chewing gum because I am not that coordinated.

3D vs. 2D

The FDA, has joined its cohorts in a few other parts of the world - Asia, Europe, South America (a small portion)- and approved 3D mammograms. Well, sometimes the FDA has a bit of a reputation as being slow. But in reading the fine print, in return for double the radiation that you receive in a 2D mammogram, you can increase the chance of finding a malignant tumor by 7%. I had to read both brief articles to find out all this.

Double vs. 7%, 3D vs. 2D. This is sort of like the dilemma between a CT scan and an Xray. A CT is basically a 3D xray where they scan you in slices and can put it all together essentially in a flip book and see your insides. But that gives a lot more radiation.

Here's a quote: An abdominal CT gives 20 times the radiation of a mammogram which gives 20 times the radiation of a mammogram. Doing that math an abdominal CT gives 400 times the radiation of a mammogram. There have been cases of cancer caused by the radiation from CT scans.

But I digress. The point is that the FDA was a little slow. But perhaps rightly slow here. Is double the radiation worth it for a 7% increase? Well, at this point, I would ask for one. Maybe not for the average woman. They say they are helpful for women with dense breasts but maybe I think what about high risk women.

If you are high risk and they think they might possibly see something, they send you back for a second set of exams. Twice the radiation. Maybe 3D is better. I'll ask about them at my next mammogram...

Looking forward not backwards

After a bad week, I need to focus on looking forward. Why was this a bad week? I was taken off two pain meds and replaced with a new one - my body didn't adapt quite quickly enough. I spent too much time last weekend on my feet and my back hurt. I joined a new gym and they made me EXERCISE! I attempted to be a normal human being. Yet another online cancer person I know died.

Now it is time to put all that behind me. Today I will start looking forward:

- We are going to the travel show tomorrow so we can plan a trip to Iceland - why Iceland? Because its there and we haven't been. Maybe we can win a trip to some place warm between now and then a well.

- I will figure out the giant diagram of the new bathroom vanity as part of our upcoming bathroom & kitchen which will start in about six weeks. I will also attempt to convince my husband I can make mosaic tiles for highlights in the kitchen.

- We will start looking at our taxes - which means take the piles of paper and sort them out so we can give them to our accountant.

- We will go walk in the outdoors and get some fresh air - this hasn't happened recently because of snow drifts and the return of the ice age.

- My husband has promised me a Valentine dinner - that he is making from scratch. Its a secret so he won't tell me about it.

- I will ignore all aches, pains, hot flashes, leg and foot cramps and enjoy myself. I will also ignore all upcoming doctor appointments for either of us. My husband's annual colonoscopy is Friday. He is a little stressed. I am more stressed. He is just happy I can't make him eat whole grain everything for a week and he gets white bread, etc.

Optimism is good for the soul. So is feeling good, a cup of hot tea on a cold day day, a new book from the library, hopes and dreams.

A reality check

Its time for a reality check. We are not worried about pain and suffering and disease and cancer and all that other crap. We are all worried about death and dying. In the immortal words of the chain smoking doctor Ted Danson on 'Becker' "We are all going to die sometime." (Wasn't that profound?)

We all know every human being is born and expects to live a good long life, savoring each new adventure, and then die at a ripe old age - saying "that's fine, I'm ready to go". Then life kicks in and car accidents, yucky medical diagnoses kick in, and long before one is ready, one is faced with the fact that 'the day' is a bit sooner than one would prefer it to be. This can be the result of something that happens to you or to someone you know.

The result is that all of a sudden death is looming in our faces. The emotional roller coaster kicks in. Its worse when its you and you have to face each biopsy, test, exam, 'procedure' (my least favorite term) or surgery and its ensuing ups and downs. You turn into your inner strength and cope. You feel battered and stressed. You are doing 'okay', no longer 'great'. You relate to people who are like you - doing 'okay, not great' - and they start dying off on you - of all the nerve!

The roller coaster of life keeps speaking up, with steeper hills, tighter corners, and without a seat belt. You start to lose the little lulls in the action where you can breath and gather your thoughts and feel your emotional stability get a little ragged. You strengthen your support system through people, medical professionals, medication - and sometimes that new foundation gets shaky. The stress ensues.

Stop, deep breath. Take a time out, meditate in the corner or run away to Bora Bora for a month. Life goes on. We are still concerned with death and dying. But we need to learn to cope with this roller coaster of life. Your death wouldn't be about you, its about those who you leave behind.

Last week was the anniversary of the death of a cancer friend who died with triple negative. Also last week an online cancer friend who was struggling with multiple physical and mental health issues committed suicide. This left behind some unexpected group stress as we learn to cope with yet another death.

We expect the nonagenarians to die before us. We expect those older than us to die before us. We do not expect those younger than us to die before us. We do not expect to be pummeled so often by the roller coaster of life and sometimes it just happens. We need our coping mechanisms to kick in and help relieve the stress.

Its not about cancer, and illness, and pain. Its about death and dying. We need the reality check to say to us life goes on and just need to learn to cope a little bit better.

In case you didn't understand yesterday's post

They had to explain the 'breaking news' from yesterday with another article. Basically, it only effects treatment for 20% of newly diagnosed cases each year. If your cancer had not spread and was in situ, it doesn't pertain to you (60%). If you cancer has already spread to other parts of the body (5%), it doesn't pertain to you. Then (using their crazy math), 33% of cases where cancer might have reached the lymph nodes. Where I went to school, 20+60+5+33=118%, not 100%. I guess the message is that it only affects some people.

Maybe there will be an article explaining yet another new math we all have to learn. Or no, maybe this is a case of skewed statistics that I mentioned the other day.

But last of all, from what I can figure out, I still would have needed the surgery I received. But I guess I still can add.

Treatment advances and changes

As in the proverbial Ginzu knife commercials, "but wait, there's more!" But what if isn't more, there is less? We are always hearing about the newest medical treatment protocol. You have already been through 8,937 treatment protocols and have acquired a second bedside table to contain your prescription bottles and have set up a third spreadsheet to manage them. And then your doctor says, again, for the 8,938th time 'there has been a new treatment protocol - and I would like you to try one of these once a day. Its a new medication and should help you.' You have heard this again and then head to the pharmacy to visit your friends at the prescription pick up counter and pick up another vial of pills. Blah, blah, blah.

But what if your doctor said 'take this instead of these other six prescriptions'. You mean less is better? Is this possible? But sometimes it is. It is a different way of thinking in the medical world. But sometimes it seems they forgot what they told us before.

Think of it this way, for decades doctors told women with a breast cancer diagnosis, they clear path for survival was a radical mastectomy where all under arm lymph nodes were removed before chemotherapy (and I don't even want to think about this surgery 100 years ago - scary). Now they break it out into two steps - lumpectomy or mastectomy and check the sentinel node or two under the patients arm. If the nodes are negative, no more digging for radical surgery is needed. Less risk of long term complications.

Well whoop-di-doo. Less can be more. But the problem I have with this is that the story ran in today's newspaper as if it was news. I don't understand what is so new about it as it is the treatment protocol that I had 3.5 years ago. Was there some new news or new research that was just released that reinforces what has been going on for several years now? Or has the rest of the world just figured out that less is more? Call me confused for the day

Healthy weight loss

As once again, the battle of the bulge sets in to our house hold, I am attempting to engage my husband in a bet - to see which of us can lose the same percentage of body weight first. He has declined. Wimp. I am determined to lose weight once again.

This time I am going to do it. Not only am I focusing on a watching what I eat but have joined a gym where a physical therapist is going to work with an exercise person (I believe the term the gym uses is 'exercisologist') to come up with a plan for me which will then be updated every three months. I believe this strategy is going to be a tad more effective than me going to the gym and looking at the little pictures on the sides of the machines and figuring out how I think I should use them.

Yesterday I met with the physical therapist. She wanted to see how fit I was or wasn't. First we talked about all my minor issues - recovering from left ankle sprain, right tennis elbow, stiff left shoulder from breast cancer surgeries, lymphedema issues in my left arm, and my partially torn right ACL from 10 years ago. She said they weren't really minor.

Then I said well there is my little back issue which is my real problem. She had me balance on one foot, touch my toes, check my reflexes, test my flexibility, and discuss my back. The back pain doctor said permanent 20 lb weight limit, no treadmill, and no twisting of my back, ever.

Thanks to my three month exercise class I feel much better than in the past and can actually touch my toes, etc. But then she had me lie on my back and pulled on my toes. That was a VERY bad thing. When the pain subsided, we decided I wouldn't do that ever again. We did come up with a list of exercises she thinks I can do - which would be nice. I think I did freak her out a little as she told me that if I ever feel pain while I am there I should tell them immediately.

The gym is actually very nice with wood lockers that come with keys. It is very quiet and nice with big flat screen televisions hanging from the ceiling. I am probably the youngest person there - the approaching 80 set was well represented. I plan on going three times a week and eat like a rabbit for a while. No actually I want to alter my eating habits and work out regularly and get back into my former wardrobe for my inner size 8 self that is screaming to get out.

I am aiming for a healthy weight loss through proper eating and coached workouts. I am not aiming for a program like Biggest Loser where you are screamed at on the show. I don't think that show promotes healthy weight loss. It promotes a crash diet which is rewarded publicly. I think my weight will be in private that will be rewarded with something I will appreciate for years to come. But will highlight the skinnier me. Now I just have to figure out how to get my husband to diet without him knowing it so we both lose weight.

Skeptical on being overdiagnosed

Or should I say on being a skeptic. Here's another book to read 'Overdiagnosed: Making People Sick in the Pursuit of Health'. I think for normal people, there is the risk of being over diagnosed in today's medical system. If you are like me have cancer or something else that is icky, you can skip this part. We are part of the group 'with your medical history, we have to be sure, blah, blah, blah'.

I think normal people run the risk of being over diagnosed. Take the annual screening tests like mammograms, blood tests, etc. If you are abnormal, do you get prescriptions and other visits and more fun 'procedures' to take care of what might be wrong with you?

For instance, if you go to the doctor for your annual physical and your blood pressure is off the charts, what next? A stress test? A visit to a cardiologist? A new prescription? What if the doctor just says 'since its only today, let's check it again in 3 months'? Are you comfortable with that or do you ask for an immediate follow up? Where is your comfort zone?

Then if you are part of the group 'with your medical history, blah, blah, blah' how easy is it for you to say let's wait and see? Last Friday I went to my back doctor and my blood pressure, which is normally 120/80 or 115/78 was 150/94, 147/88 and 155/90 (or something like that - I can't remember three minutes ago, never mind 3 days ago). The third test was on a different machine after a 15 minute wait. The nurse said to me that I should make sure I mention it to the doctor and maybe he would want me to go to my primary care physician for follow up. I did mention it to him, and he did not think it was significant.

I went home and researched it and asked questions and found that our blood pressure can have its ups and downs and I shouldn't worry. (What? Me worry?) I have opted with this to do nothing for now. I don't care that I am in the 'with your medical history, blah, blah, blah' group at this point. I am not jumping to any conclusions. I have another appointment in a month with another doctor and if it is still high, I will worry about it then.

The nurse was right in deferring to the doctor as that is her role. The doctor was right in not over reacting and rushing me to a cardiologist. I am right in not over reacting and rushing to my primary care. This is a little blip in my medical history and totally out of line for me. But do you see how easy it could be to rush to the over diagnosis? Keeping a healthy dose of skepticism in your medical appointments might keep your blood pressure down.

Value vs. pay for service

The traditional health care model pays doctors and medical facilities for patient visits and medical tests and procedures. This means doctors are squeezed to see more patients and shorter visits. They are all reimbursed on volume - the concept of patient care goes by the wayside as the number crunchers force more on the practitioners. This squeeze is felt all the way through the health care system. Nurses are forced to cover more patients. More and more tests are run which require more radiologists to read the results and faster

Now there is a symposium in the Boston area focusing on the concept of value and patient care. It calls for focusing medical care on patient conditions instead of on medical specialties as has been traditional.

I am not a fan of doing something the same way over and over just because it is the way things are always done. As we reform our health care, we should look at all ways for change. If we are changing payment structure, insurance overhaul, and more, we need to look to improving patient care and provide more value.

If my care was more centralized, maybe issues and their overlap could be seen and treated. I am in the middle of changing my primary care physician because I don't feel like she is managing my care. I need someone to manage my care and not send me down the road of yet another specialist without having any idea of how I am doing.

Value and the patient should be first, not last in the health care line

Statistics and diseases

Back in college, I had to fulfill distribution requirements, meaning I had to take classes in different areas - the only one I remember, possibly because it horrified me the most was to take four classes in math and sciences and two had to be lab sciences!!!! I took Physics for Poets (yes really, it was a liberal arts college - Beloit College) and I blank out on the other but for math, for some reason I took calculus but then I took Statistics. Which I actually enjoyed. I remember one assignment to find a newspaper or magazine article which showed a skewing of statistics.

After I graduated I went to that little college down the street for their extension school where I took another statistics class. Then I started working in marketing where I learned how to put spin on anything. Including how numbers are bent and spun in circles a thousand times to put the desired slant on them. The numbers are real but its their interpretation that is dizzy and crying to get out to have the truth revealed.

Scientists report the life time risk of getting a disease is one in 30 or whatever. But if most people get the disease over the age of 80 with 80% of the cases occurring in the population over 70 you shouldn't think I'm going to die but that if I live to be over 70, I have a good chance of getting it. That's a made up example for an imaginary ailment but let's take the real example of breast cancer.

The peptobismol pink chant for breast cancer is one in 8. As in did you know that one in 8 American women will get breast cancer? OMG!!! This is supposed to inspire people to run to their wallets and send money for pink things. Well, a little more information behind those 'shocking' numbers is from the National Cancer Institute. Yes there is a life time risk of getting breast cancer of 1 in 8 but the probability of getting the disease is:
"A woman’s chance of being diagnosed with breast cancer is:

* from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
* from age 40 through age 49 . . . . . . 1.45 percent (often expressed as "1 in 69")
* from age 50 through age 59 . . . . . . 2.38 percent (often expressed as "1 in 42")
* from age 60 through age 69 . . . . . . 3.45 percent (often expressed as "1 in 29")"

And it increases over the age of 70. So if you add up all these numbers, spin them around a few times, blah, blah, blah, you get 1 in 8.

In other words, don't believe everything you read and take them with a huge grain of salt (accompanied by a margarita or six) when offered by a marketing guru. If you really want cancer statistics look elsewhere and read the fine print.

Finances and cancer

You get cancer and then you have to pay for it. Financially - not just emotionally or physically. In addition to nasty treatments that leave you physically drained, you are expected to keep your regular work schedule so you have an income. I was reminded of this by a friend yesterday who referred me to an online discussion of the financial toll of cancer. Insurance doesn't cover everything. Co-pays and prescriptions start to add up and you have to miss work due to surgery and chemo therapy.

My story is a little different but I think the point is there. I was laid off from my job two weeks before my breast cancer diagnosis. I was trying to look for a job through surgeries and chemo. Ha, it didn't work. I did get requests for interviews and accepted them - thinking I could drag myself there with my post surgical pain. Is a surgical drain a good or bad job interview accessory? Finally I just gave up on job hunting and worked a part time job at a local community ed program. At the end of treatment, 8 months later, I found more work part time. I have worked part time ever since. My earnings are approximately 50% of what they were previously.

I was also lucky enough to get health insurance through my husband's job. I never paid that much attention to what was covered and what wasn't. I have a $350 deductible annually - this means I pay the first $350 out of pocket. Then I have co-pays for each visit which range from $20-$40 and then I am responsible for 15% allowable expenses up to $5000 each year.

So if I go for a procedure costs $2000 in the allowable amount, I would have to pay 15% or $300. This out of pocket amount is capped at $5000 each year. I have been hitting this by May or June of each year. But that means I have to come up with $5000 to pay my out of pocket amounts on my reduced salary in six months. So money gets tight while I am scraping up this. The mortgage and utilities still need to be paid, the cars need oil changes and tires, groceries need to be bought. I only need to pay $5000 each year. Many insurance policies do not have out of pocket caps. Instead they offer lifetime caps of what they will pay for treatments for a policy holder.

We are lucky ones. There are many who live paycheck to paycheck or already were in financial straits before adding a cancer diagnosis and the financial burden of medical bills. Or don't have adequate medical insurance. What if the primary or only income earner gets diagnosed and ends up going on long term disability at 60% of their previous income? Foreclosure and bankruptcy quickly loom. I know people who liquidated retirement assets to pay for treatment costs.

Some clinical trial drugs or others which are deemed 'experimental' by insurance companies are not covered. The doctors want to offer the best possible treatments. The patients want to try every possible avenue. Costs continue to pile up.

The financial toll of medical diagnoses can be severe. But can't be ignored. There shouldn't be a financial burden along with the emotional and physical toll.

Politics and cancer

As the saying goes 'there are no atheists in foxholes' there are no politics with cancer. Its an equalizer. No one wants it. Some of us get stuck with it.

I think sometimes I come across as being political when I talk about health care reform, politics, etc. I am not trying to be. Our household consists of one slightly to the left of liberal and one slight to the right of conservative (and a moderate cat). Both of us have dealt with cancer and being a caregiver. We cope. Our political differences sometimes show up - particularly when watching political speeches. But they never show up when we talk about access to health care. Particularly when talking about cancer health care. There may be some differences of opinion on how to pay for it, but we manage.

Cancer has no politics. So lets take the politics out of health care.

Cancer Coach?

In one of the blogs I read yesterday, I can't remember which one, the concept of a 'cancer coach' was mentioned. I thought 'cancer coach'? What can that be? So I turned to Google and found there are people out there making a living as 'cancer coaches'. These people claim they can help someone with cancer navigate their way through treatment and make sure they get the right treatment. I call them scammers who are making a living off people who are dealing with major trauma.

I will not do them the honor of linking to them here. They offer services 'coaching and educational services' or are an 'expert and survivor'. These people are lower than low. Taking money from those who are struggling for their lives through treatment. I am appalled. I am more than appalled. I am beyond words

First of all if these people really wanted to help others with cancer, they wouldn't make a living doing it. They wouldn't charge them. They would set up a non profit or something to help them to offer needed help for free or at low cost.

When someone is diagnosed with cancer or has a recurrence or spread, the snake oil salesmen come out of the woodwork. I can't tell you how many times I have been offered 'a cure' for cancer. If I send a small fee, they will give me the cure I need. These are horrible people who prey on those who are struggling with the lowest points in their lives.

Cancer coach? No, they are not. They are snake oil salesmen. I have been through cancer twice - so maybe I have twice the experience?

Its about the patients stupid.

I don't care about people's politics. The opposition to or support of the new health care law. The whole point of it is to take care of people when they get sick. The judge in Florida who ruled against parts of the law. The politicians who keep speaking out about how it is unconstitutional - frankly it gets very confusing to me. The right is against it because they don't like the president. The left wants to spend more to take care of people but don't think about the budget.

The whole point of the health care reform is to take care of sick people. The whole political thing is getting crazy. I think everyone should take a step back and look at the big picture with no politics or opinions on the president or the Tea Party or Sarah Palin involved.

Why are we reforming health care? To take care of the citizens of the country who can't afford health care. If you are sick, shouldn't you be able to receive health care? Its not just for cases of the sniffles but for the mothers who want a healthy baby or the people who receive a cancer or other disease diagnosis or for the people who are injured in a car accident. These people are citizens of this country and deserve to be taken care of when they need it.

All the politics are blurring the fact that health care reform is needed to take care of people who are dying unnecessarily. I am not even going to get into the fact that insurance companies and pharmaceutical companies are making billions of dollars. Health care providers and patients are being squeezed by the insurance and pharma companies. Doctors are being dictated by insurance companies on what care they can offer their patients.

If you are against the law for what ever reason, do you have any other suggestions on how we can keep people from dying? On how we can stop insurance companies from telling us what care we can receive? If you can afford your health insurance and have a job, you are lucky. What about the millions of Americans who have lost their jobs in the worst economy in decades and as a result they can't afford their health insurance? How are they supposed to keep their children healthy? Suggestions are welcomed.

Its not about politics. Its about the patients, stupid.