Wednesday, February 29, 2012

What happened to 'do no harm'?

This book sounds like it will give a pretty scary overview of medical treatment in the US. I will have to add it to the stack of intellectual books I am attempting to read 'The Emperor of All Maladies' and 'The Omnivores Dilemma' and others. But I really will read them all some day. 

Anyway back to the book, How We Do Harm: A Doctor Breaks Ranks About Being Sick in America. The title says it all. One example in the article talks about a woman who was treated with the standard of care for breast cancer in the early 1990s. Her treatment nearly killed her and she was hospitalized for nearly a year. And that was the standard of care. Her doctors probably knew about the side effects and yet prescribed it for her just as they probably did for many patients. After wards it was learned in clinical trials that the treatment probably did not good and may have done harm to her as well.

Medical practice in the US has a range of participants:
  • FDA who approves treatments, medications, etc.
  • Insurance companies who pay for these
  • Patients who want the best available treatment
  • Doctors who prescribe the treatments 
Then we add to the mix the availability of equal care to all and the patients who are willing to sue their insurance companies to get a new treatment covered. As you are aware I am not a fan of insurance companies but I find it silly for patients to sue for coverage of a treatment which is not FDA approved. I see this as interference in the medical system. (Yes, there really is a medical system in the US.) I am all for arguing with my insurance company (which I need to do this morning but that's another story) but I don't think I would sue them. Nor do I think I would want a treatment which is not FDA approved.
I am starting to digress here. Back to the subject of the book. It sounds pretty scary. I want my treatment to be FDA approved and I want it to be safe and effective. I do not want to be over treated and nor do I want to be under treated through unsafe medical treatments. I want my doctor to have my best interests at heart. 

Where I am treated, the hospital has set some relatively conservative protocols which give their doctors some leeway in treatment but provides a relatively high standard of care. I am comfortable with this. I do not want to be a guinea pig, I want to be healthy. I trust them. I don't want to end up in the next edition of this book.

Tuesday, February 28, 2012

What kind of patient am I?

I often wonder what my doctors think of me. I have been told I am a good patient in that I take my medications as prescribed and do as I am requested but what do they really think?

Am I a hypochondriac in their eyes? I mean I am at the damn doctor's office too damn often if you ask me. I had one appt in January and 2 appts and a scan in February. March has 5 dr appointments already scheduled. I can't remember any more at this point. Does this make me a hypochondriac? Most of them are follow ups or routine visits. I have only been to see my doctor once at my request in the past few months. I try to ignore symptoms for a week or two. If I have pain or something it needs to last long enough for me to be able to document it and give my doctor an idea of when it happens. But every time I am at a doctor, they look at my records and make some remark about how often I am there and seeing another doctor.

But then there are hateful patients. I really hope I am not one of these. I just learned about them in an article - these are the ones for whom nothing is good enough. The doctor is incompetent, inconvenient, blah, blah, blah. I really hope I am not one of these but I am not so perfect that I can't say I have never exhibited any of these traits. I am sure that under stress we all can show some traits of these demanders, clingers, help-rejecters, and deniers.

The hateful patients were diagnosed first in the 1970s:

"Hateful patients" are not those with whom the physician has an occasional personality clash. As defined here they are those whom most Physicians dread. The insatiable dependency of "hateful patients" leads to behaviors that group them into four stereotypes: dependent clingers, entitled demanders, manipulative help-rejecters and self-destructive deniers. The physician's negative reactions constitute important clinical data that should facilitate better understanding and more appropriate psychological management for each. Clingers evoke aversion; their care requires limits on expectations for an intense doctor-patient relationship. Demanders evoke a wish to counterattack; such patients need to have their feelings of total entitlement rechanneled into a partnership that acknowledges their entitlement — not to unrealistic demands but to good medical care. Help-rejecters evoke depression; "sharing" their pessimism diminishes their notion that losing the symptom implies losing the doctor. Self-destructive deniers evoke feelings of malice; their management requires the physician to lower Faustian expectations of delivering perfect care."

If you every see me being a hateful patient, feel free to smack me inthe head and say 'wake up, be nice'.   That 's one diagnosis, I do not want.

Monday, February 27, 2012

Colonoscopy Sweepstakes

Who would have thought that Ozzie Osbourne would become an advocate for colonoscopies? Well he has after one' saved his wife's, Sharon, life. He started a sweepstakes where the winner gets flown to New York and gets a free colonoscopy and three day stay in the city. Well if you have been putting off this potentially life saving procedure, I'm sorry but you are running out of excuses.  Dave Barry summed it up  in one of the funniest columns I have ever read - basically none of us want a camera up there. Go enter at CBS Cares - deadline is March 30.

Rock on Ozzie.

Sunday, February 26, 2012

Yoo hoo, its about the patients

Its not about the money, its not about the money, its not about the money, its not about the money, its not about the money....

I can go on and on in an effort to pretend that all those cancer advances are about the patients and not about the money. But I know I am only pretending:
  • I do realize that businesses are out to make money.
  • I do believe that insurance was once intended to help people and not be about the money and people getting rich. 
  • I do believe that medical advances can be very expensive to develop.
  • I do try to believe that the health care industry - from doctors and nurses to health insurance to drug and device manufacturers - at some level does really care about the patients.
But I have a real problem when I read about people who:
  • Can't afford their insurance premiums because they are so high due to their health issues
  • Can't afford their co-payments because they are in the thousands for a single round of chemo
  • Co-payments are so uneven that one patient pays a couple of dollars and another patient pays a few thousand for the same medication
  • Hospitals look for ways to make more money and then claim its in the best interest of the patient - hospitals have patients come in for an injection because they can make more money than if they taught the patient how to self administer.
  • Medical bills are a leading cause of bankruptcies.
"“Patients have to pay more for their premiums, more for their copayments, more for their deductibles. It’s become harder to afford what we have, and what we have is becoming not only more costly but also complex,’’ said Dr. Michael Hassett, a cancer specialist and policy researcher at Dana-Farber Cancer Institute in Boston.

Insurers also are being squeezed by laws that require coverage and restrict premiums. And the burden is growing on Medicare, which in some cases pays for treatments and tests not shown to benefit patients.

Why have costs escalated so much? To some extent, it is the price of success.

Cancer deaths have been declining in America since the early 1990s. Two out of 3 people now live at least five years after a cancer diagnosis, up from 1 of 2 in the ’70s, says the American Society of Clinical Oncology."

Sorry. I don't believe its the price of success. Yes I believe that medical advances probably do cost more but I also believe some people are getting really rich. And that some people are forced to make a decision between feeding themselves and their families and getting much needed medical treatment.

Saturday, February 25, 2012

Putting a deadline on cancer

The government, in all its brilliance, has put a deadline on breast cancer. They want to make it go away by 2020. Seriously, they gave breast cancer a deadline to go away. How many smart politicians were involved in this bill (H.R. 3067?? There is even a non profit, Breast Cancer 2020 which is the National Breast Cancer Coalition's strategic arm, behind them urging them on, complete with a website counting down till Jan 1 2020. They state:

"NBCC's mission is to eradicate breast cancer by designing and acting on effective strategies addressed to the administration, Congress, research institutions and health care providers to end this disease. The Coalition informs, trains, and directs patients and others in effective advocacy efforts. Nationwide, the women and men we have trained are shaping breast cancer public policy by participating in legislative, scientific and regulatory decisions; promoting critical analysis of breast cancer information, media coverage and actively working to change all systems that affect our mission to eradicate breast cancer."

A friend, diagnosed with a later stage breast cancer, told me about the bill. I had already heard about the organization but I have thought they were a bit ridiculous. How did they pick this deadline? How do they plan to meet it? A congressional act will help but research breakthroughs don't happen on schedule, they happen when they happen. And if the FDA gets involved and anything has to go through the clinical trial process, according to BC2020's clock, we only have 7 years, 310 days, and 15+ hours to get approval.

The more I think about it, the dumber I think it is:
  • A Congressional act and media coverage will greatly help in eradicating breast cancer - NOT.
  • They want to eradicate what part of breast cancer? The cause, find a cure, or what?  They talk about getting everyone to work together but to what end?
  • And if this is all about ending breast cancer, what about curing those of us who have already had it? Especially all the women who have late stage disease? 
  • What about other types of cancer? I think there are over 1.6 million cancer diagnoses in the US each year of which 220,000 are breast cancer but what about the 1.38 million people facing other cancer diagnoses.

I am not impressed. This strategy is too focused and doesn't account for too many issues. If I could give it a rating, I would give it 5 stars for effort, 3 stars for strategy, and 1 star for brilliance.

Friday, February 24, 2012

My body, my choices

May no politics or religion touch my body, thank you. I do not want politics or religion anywhere near my body. Its no one's business but my own what my medical choices are for my body. I really don't care what you think about birth control, surgery options, life prognosis, flabby status, overall health, and my multiple ailments. Its none of your damn business. The only people who are allowed to be concerned about my body are me, my doctor, my husband, and me again (and my parents because they are, well, my parents). Its all about me.

So get the politics and religion out of health care please. Whatever happened to the separation of Church and State? Doesn't the Constitution and the Bill of Rights allow us to make our own decisions? So why are politicians and religious leaders allowed to interfere in medical coverage? They are making decisions about my body and I find that wrong.

I want a level playing field regarding my medical choices. I should be able to look at a range of options available and make decisions based on what I believe, what I want, and what my doctor recommends. I should not have to worry about what is covered in my health insurance or what some politician, religious leader, or other blabbermouths think about what is 'right' in their eyes. Their eyes are not in my body, my eyes are in my body so get your big fat snoopy nose out of my decisions.

I can understand people don't believe in abortion, Viagra (don't get me started on the fact that Viagra is covered by health insurance but birth control is not), antibiotics, modern medicine, voodoo, Obeah, Wicca, Catholicism, Islam, Judaism, Taoism, Democratic party, Republic Party, Green Party, Communism, the rights of free range chickens, and the possibility that moral and ethical politicians actually exist. But we are all allowed to have our own opinions.

Politics and religion should not be creating barriers to medical treatment. There are enough other socioeconomic barriers in place for many people. So please just shut up about religion, politics, and health care.

Thursday, February 23, 2012

It sounded like a good idea at the time

Just because something sounded like a good idea at the time, doesn't meant in the long run it will be. I am sure we can all think of many of these in our lives - we have all done them and then after said to ourselves 'Doh! What was I thinking?'

Here is a prime example, and explains something to me that I never understood (I'm claiming chemo brain here as I think everyone else probably already knew this): Where did MRSA come from? As we should know MRSA is a nasty anbiobiotic resistant form of staph infection that can easily be fatal. It started in humans and was treatable but now can kill us off:

"The strain, Staphylococcus aureus CC398 started in humans and was still treatable with antibiotics, said Lance Price, director of the Center for Food Microbiology and Environmental Health Translational Genomics Research Institute in Arizona.

It  spread to livestock, which are usually pumped with antibiotics, to keep them healthy. “The lineage appears to have undergone a rapid radiation in conjunction with the jump from humans to livestock, where it subsequently acquired tetracycline and methicillin resistance,” according to the study.

Methicillin and tetracycline are among the most common antibiotics used to treat staph infections.

The problem is in the way animals are raised and pumped with antibiotics, said Price, the lead author of the study.  He said that farmers and ranchers give millions of pounds of antibiotics to farm animals to make them grow faster and to prevent - rather than treat - diseases."

Well, doh! If the meat we eat is full of antibiotics its no wonder that the infections have become resistant to it as they are already over exposed. Okay, now I want organic meat. I also don't want antibiotics unless I really need them. Icky poo. Just because it helps farmers grow healthier, fatter beef faster, it doesn't mean there won't be problems done the road for other people. Just another idea which sounded like a good idea at the time.

Wednesday, February 22, 2012

Thoughts on blogging

Now that I have been in the blogging business for nearly five years, it is time to sit back and moment and think for a bit. When I started blogging it was to keep people informed of my medical adventures with breast cancer so I wouldn't get all those phone calls and go through the latest tidbits from my most recent 'episode' and then possibly get asked questions that I might not be ready to answer.  But my friends and family didn't really become blog readers.Well there are a few that read my blog regularly and fewer now. (They don't follow directions very well I guess.)

So I got through breast cancer treatment and I was supposed to be a healthy person again living in 'my new normal' whatever that was and then supposedly I would stop blogging, go back to work full time, and blah, blah, blah. But we all know that's not how life works, that being a healthy person thing didn't really start up again. First I had gall stones and then my gall bladder out. Then my back started to hurt. Some where in there I sprained my ankle, got tennis elbow, and fell on my knee, the bursitis in my hip never really went away -in fact its doing quite 'well' from its point of view. I went on a few million more doctor appointments and kept blogging.

And my audience kept growing. I really don't know who all you people are who read my blog. I know there are readers as Google Analytics don't lie. I can say hi to Mary in France who is one person I know who has read my blog almost daily since its start. I can say hi to Robin in Cambridge who I think is a fairly regular reader, except when she is off on one of her vacations - a perk of retirement. My mother used to read my blog often but has switched to following me on Facebook. My sister in law reads it from time to time and then tells my brother when he needs to read it - but he sometimes just calls me instead. Leah reads it sometimes as well. I have a relatively new but fairly regular reader from CTCA. A few other people I know from elsewhere tell me sometimes they did read my blog for the first time in a while.

But who the hell are all the rest of  you? I have no idea. But thank you. I like all of you. Well most of you. The people who leave me information on the cures for cancer if I just visit their website, you can skip my blog, thanks.

Blogging has taken a life of its own. If I didn't blog every morning, what would I do instead? I have no idea at this point.

Tuesday, February 21, 2012

Wallet, keys, brain cells?

In our house, those are the questions we must ask ourselves as we go out the door every morning. Wallet and keys go with out saying as you can't get very far without them. Brain cells are defined as:

- where am I going?
- what am I doing?
- when will I be home?
- am I dressed appropriately?
- did I feed the cat?
- did I lock the door?
- did I brush my teeth?
- did I take my pills?
- did I have breakfast?
- do I need lunch?
- sunglasses?
- water bottle?
- do I need anything else?
- and the list goes on.

The purpose of this question is to avoid that 'oh damn' moment 1/2 mile from home forcing a u-turn and a delayed start as we return for the rest of what we need. And to avoid the second and third or more 'oh damn' moments as it takes multiple tries to get out the door with everyone.

If I was 'perfect' (and a healthy person), this would never happen but as I am a 'sort of' healthy person with chemo brain (my excuse for the rest of my life), this is a daily occurrence. Today I am going to work so I need lunch, water bottle, mail I need to drop off, sun glasses (I think it will be a sunny day), cell phone, and probably a few more things before I can get out the door. I still need to brush my teeth but I have already taken my pills, showered, and eaten breakfast so I am feeling virtuous (for a moment or two). I might even leave early for work.

Monday, February 20, 2012

How's your medical rollercoaster doing?

Mine is fine - that's all I'm going to say about it now. The roller coaster ranges from the relatively flat start before it heads for the first big hill - the height of each hill is determined by the length of time to get to the top - years and years of problem free health. The steepness of the climb is determined by the level anxiety reached through multiple ailments and tests. Then when the top is finally reached the pitch and length are determined by the prognosis of your health.  If its cancer, do you end up lower than where you started? If its a minor ailment you might go down hill for a little bit and then stay basically level before climbing up another hill.

On the medical roller coaster you never know when the next hill will start and how steep and tall it will be, never mind the ride down off the top. The goals on the roller coaster are not to have too many big hills and not to turn into a hypochondriac on the way where every little twinge is about to send you flying over the edge to another downward spiral.

Cancer sticks you on the roller coaster for life. You don't get to get off. Nor do you get to stay on the low level with a few small bumps here and there.

Sunday, February 19, 2012

Pet peeves

One of my biggest pet peeves is tardiness. I hate waiting for anyone and I always try to be on time. I do not claim to be perfect as I am human and I am late sometimes. But I detest waiting for the same people over and over again. I don't like waiting for dinner companions, coffee dates, and doctors.  I detest waiting for people so much that I am sure I have blogged about this before.
The hospital I go to has little signs up saying that if you have been kept waiting more than 15 minutes to bring it to their attention at the registration desk. I have seen nurses come out and make an announcement that Dr so and so is running behind. I understand that sometimes doctors need to take more time with a patient who is having a bad day. We want our doctors to be able to do this but it may make them run behind schedule. So as long as they tell us, then it is okay. You also need to do your part by showing up on time. How is the doctor supposed to do his job if you aren't there at the scheduled time? Are you going to be late or are you not going to show up at all?

There is nothing worse than sitting around waiting for someone who is late and was the one who selected the meeting time and place in the first place. If you can't make it on time and know that, change the time, don't make me wait.

Even worse are contractors or other people you hire who are taking longer than estimated on a job and don't tell you. If they say two weeks and in week three are clearly not done and have not new estimate of an end date, I would get rid of them. When we redid our kitchen last year, I had a one month window for everything. I was very clear with the contractors that was the time frame and I wasn't budging. We planned ahead and it was done on time. I also was very sure to keep an open dialogue with them on what was needed so they could make me aware of unexpected issues arising (which they always do in home improvement) so they didn't cause delays and expense.

The reason why this is on my mind this morning is there was an article in the morning paper on how being late can harm your work image. "How often have you heard a co-worker say something like, “Sorry I’m late, I was on a call with . . .’’ It’s really not an excuse. If it happens once, it may be understandable. But when you do it repeatedly, it shows you are disorganized and disrespectful to the people you have kept waiting. And that is not a good image for you to build. Be on time. It’s the first thing you can do to being more successful at work."

Its not just about being more successful at work, its about being appreciated by your friends and family by doing what you said you would do and not letting them down or being disrespectful.

Saturday, February 18, 2012

Handling change

Change happens in life. Or we should say 'sh*t happens'. There is nothing we can do about it. Again 'resistance is futile'. Darwin told us about survival of the fittest - the ones who adapt are the ones who survive. If you do not adapt, you will become extinct.

I volunteer with a non profit organization - actually I volunteer for a bunch of organizations. But there is one organization that has been faced with a lot of change over the last few years. They have grown from a small organization to a big organization which is a good thing. As a result they have had to mature and change the way they do business. Systems that were grassroots focused, with everyone pitching in to do what they can, now have been streamlined and replaced by new ones. People have new roles. Older expectations have been replaced by new ones. Former volunteers and employees have left and new ones have come in. This is not a bad thing. It is sad to see people leave but people do move on in life.

The organization has also had some growing pains over time. There have been issues with conflict with personnel, a problem employee, and lack of transparency. Some of the changes are to compensate for these issues. These things happen and life will go on. The problem employee has left. New expectations are being laid out. The organization continues to do its good things.

BUT (and that is a big fat but!) some people, volunteers mostly, are not handling the change well. There is some disgruntledness coming out from the volunteers. It is spreading negativity and unhappiness. I am not sure why it is continuing. Every new bit of change is being disparaged with additional comments. While I believe in the organization and like what I do for them, I am getting to the point where I don't want to be associated with them. Not because of the changes but because of the way some people are not adapting to the change.

It is taking the fun out of it for me. I am approaching a crossroads where I must make a decision on whether I continue to volunteer or not. I am sure I can find other organizations where I can volunteer but I have made friends with the other volunteers and will miss them and the organization.

Its all about handling change. I am trying but feel I am being pushed away by the unhappy ones. Maybe the change that happens is I move on.

Friday, February 17, 2012

Too creepy for me

I am not sure I am ready for the latest in medical technology. Its just creepy. First how does an implanted chip that automatically releases doses of medication either timed release, when wirelessly told to by your doctor, or when something triggers the dose. What happened to taking an aspirin when you get a headache? Or is this for stupid people who don't remember their medications? I use the high tech weekly pill box to manage my medications. And if they implant this thing - the size of a domino (which sounds huge) - they need to repeat the implant when it runs out. No way. Not me. (Chills running down my spine at that one.)

Or if that isn't creepy enough, how about little robots made from your own DNA that are roaming around your body on demand with instructions to kill off or reprogram diseased cells. Why am I thinking of borgs right now? 'Resistance is futile, you will be assimilated.' This is just too creepy for me.

I am waiting for medical advances to solve all my medical ailments but I am not sure I am ready for implants and robots inside me. Icky-poo!

Thursday, February 16, 2012

Negativity online

I can't claim that I have never been negative online but I think there is too much negativity and it doesn't need to be mean. When I write about someone or something I do not swear (the only thing I swear about is my health) nor do I mean to write rants and diatribes that go on and on. I write my blog assuming my mother is reading it (she does) and write not to offend but to provide an opinion. However if you look around, it is not hard to find obscenity laced websites promoting a negative point of view.

Any business these days will have an 'anti' site. Google people against Walmart, Target, Bank of America, etc and you will probably find several sites dedicated to people who are mad at the business. That is fine. I am all for people expressing their opinion and uniting against the new bank fee or whatever. But it can be done politely.

I belong to about a million email lists, websites, message boards, etc. The one thing that turns me off is swearing. An occasional f-bomb or other four letter words do not bother me - as long as they are few and far between. If someone has seemingly forgotten there are other words in the English language, I promptly stop reading. Or if all someone writes about is anti-something, I often get turned off as well. I read a blog that has some pretty firm opinions against an organization, that is fine. But when they post more than ten times in one day, I stop reading.

Can I just politely ask that people be a little nicer online? And occasional apologies for offending someone aren't out of the question either.

Wednesday, February 15, 2012

You are darned right we are frustrated

From the point of view of those of us who are living the cancer lifestyle, we are frankly sick of hearing about the war on cancer and are impatiently waiting for some real progress. Yes there is progress in treatment and screening. But where is the real progress in finding a cure or a way to prevent it in the first place?

President  Nixon's 40 year war on cancer is starting to drag here. Can we have some focus here on a cure? Skip the ribbons, walks, bike rides, rallies and awareness, let's have a cure. Thank you.

Tuesday, February 14, 2012

Aren't they supposed to be saving lives?

I thought the whole point of medications is to save lives? Isn't that why medications like methotrexate, antibiotics and thousands more were invented? To save additional lives? Evidently that is not the case. Well maybe they were not invented to save lives, they are now merely a way to meet the bottom line for the manufacturers.

There is a growing problem with shortages of critical medications. I have heard  numerous excuses why there are these shortages - manufacturing problems, shortages of ingredients, etc. They are excuses. And there is no excuse for them. I call it poor planning by the manufacturers. I understand that plants need to be shut down for maintenance and that the manufacturers are dependent on the supply of needed ingredients. But shouldn't they plan accordingly?

This is one that really kills me, a plant shut down for sub-par conditions:

"Last year, Ben Venue Laboratories closed an Ohio plant that made about half of the country’s supply of methotrexate, which is also used to treat rheumatoid arthritis, systemic lupus, and bone tumors, among other illnesses. The plant had been under scrutiny for what Kweder said were significant quality-control problems. The plant also was a major producer of Doxil, a drug used to treat ovarian cancer."

I am sure the plant was either making cuts to meet the bottom line or otherwise slacking off on their quality control - hence their problems. You may call me naive but I believe that the goal should be to save patients lives not to meet the bottom line and line the pockets of a bunch of share holders. This should also be true of medical facilities.

Monday, February 13, 2012

That five year mark

So the question arises - why five years? Why was five years selected as the survival rate time frame used in cancer statistics? I mean why not 3, 7, 6 or 4? I have no idea. This year I will reach the five year mark with breast cancer and I am not jumping up and down with joy. I think it will be just another day. I don't divide life with cancer into five year increments. Life doesn't get broken down into five year increments. We celebrate birthdays, anniversaries, and holidays annually. But communist countries have five year plans. Is life with cancer broken down into five year plans as well?

In the past five years I have lost a few friends to cancer. One was lost to triple negative breast cancer which I have since learned if it is going to recur it usually does in the first 18-24 months. She only made it about 4 years from her diagnosis. So why five years for that? She and others like her just become part of the ones who didn't make it when you look at the statistics.

When I was diagnosed in 2007, a Boston area TV newscaster went public with her diagnosis and is now talking about her five years with cancer. She is also frustrated by the lack of a cure so far. It was nice to follow her treatment as she was a few months ahead of me. Its now nice to see that she is doing well too but acknowledges how her life has changed.

I am just not sure I understand why they selected five years as the increment for life with cancer as life goes on day by day.

Sunday, February 12, 2012

When do you stop thinking about cancer?

Once you have a cancer diagnosis, you are supposed to go through treatment and then move on to your new normal. Ahem. I have never liked that term 'new normal'. I don't want to move on to a 'new normal' I want to still be me. I also don't like the term 'cancer survivor', all I survived was a bunch of doctor appointments.

The mental roller coaster is not much different. It is part of that 'new normal' too. The question that has been debated offline for eternity and now all over the internet - it has been brought up on every cancer board I have been on is: 'When do you stop thinking about cancer?' The answer is never. I don't think this will ever go away until there is some kind of cure. There is always that little voice in the back of your head saying 'what if, what if, what if, what if...'

24 years after my thyroid cancer diagnosis, I was told I had fibroid tumors and needed a hysterectomy. My first question was 'what are the chances they are cancer?' I was told very small -  in fact the surgeon told me 'they would slice and dice them to make sure'. I kind of liked the term 'slice and dice'. But cancer was my first thought.

Last fall, I found I had a bump in my mouth on the back of my jaw. I asked the dental hygienist at a cleaning and she thought it was significant enough to have the dentist take a look. His first words were not what I wanted to hear 'I don't think its cancer but if it doesn't go away...'. Of course it didn't go away and my brain was heading down the cancer road to hell again. I later found out it was just some scar tissue and is nothing. (A special note to doctors, never start with 'I don't think its cancer but...')

I am not sure at this point I can ever have a medical ailment now without first thinking of cancer. Living in the 'its-not-a-headache-its-a-brain-tumor' lifestyle. You can't undo the cancer stuff, they still have no cure, and it will always be there. So my answer to the question of when do you stop thinking about cancer is: Never.

Saturday, February 11, 2012

Doing what you say

I know everyone is jumping up and down to rant, rage, and rave about Komen these days. I am pretty neutral, leaning to reluctant acceptance, on them. My breast cancer diagnosis had nothing to do with these feelings. Before it I was probably less informed about what they do but still not overwhelmingly impressed. I think they deserve credit for lots of things they have done:

- Breast cancer is no longer a dreaded, whispered about disease, largely through their efforts.
- They have raised awareness of breast cancer to previously unheard of levels
- They fund a lot of programs on breast cancer education, screening, and awareness
- They provide a lot of information on coping with a breast cancer diagnosis, treatment, and life after it

On the other hand, they have not:
- They have not discovered a cure for breast cancer through their efforts (not that anyone else has either) - actually currently only 15% of their funding goes to breast cancer research anyway
- Their name is now misleading as only 15% of their funding goes to breast cancer research - see above
- They do not 'play well with others' based on their history of lawsuits and partnerships.
- They have pinkified everything under the sun.

I will give credit where credit is due. They have done a lot. But with this most recent explosion of bad press and scrutiny on the organization, employees, and their financial books, they seem to be crumpling and their support seems to be fading.

My biggest problem with them is that they do not do what they say. While I think its wonderful that they support all this awareness and education but in their name they say they are for the cure for breast cancer but that's not where their money goes. If they continue to do what they are doing they should be called the 'Foundation For Awareness of, Lawsuits About Our Name, and a Little Bit of Research for the Cure for Breast Cancer'. Then they would be doing what they say.

Friday, February 10, 2012

Being a patient

I have given myself the title of 'Professional Patient' which I believe I deserve because I spend so much of my life going for some kind of medical treatment. I was faced with this sad fact yesterday when I went for a medical adventure for my back.

All my back medical adventures and all my surgeries check in at the same area so you can guess I am very familiar with the process. Stop and check in at the main desk upstairs - which is very silly as all they ever do is check your name off on a piece of paper and then tab through a million fields on the computer, never asking a single question. You just stand there (which is not a piece of cake with my back these days), then they take their ruler and check you off on the piece of paper and draw a line underneath your name. Then they turn to the computer and tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, tab, you get the point. Finally my back hurts and they say 'you're all set, go down to the second floor, and go through the blue doors and check in there'. I don't wait for them to say more than the first three words, before leaving. I know where I am going. I always take the stairs down as there usually is a wait for the elevator but yesterday the doors magically opened on a down elevator just as I was walking by it.

I go down to the second floor and check in at the desk there, which means writing my name on a piece of paper and checking off that I am in pain, yes I have someone to take me home, there is no chance I am pregnant, and sit down in a comfy chair. A nurse comes out and gets me. Yesterday I went in the right door - that's for people who have to change into the 'lovely' hospital gown, robe and little booties (apparently these are meant to be ugly so no one will steal them). If you go in the left door, it means you get to keep on your regular clothes. After changing, you sit down in another chair - except yesterday they were ready for me before I was ready for them so I made them wait for a minute.

The nurse said to me 'Do I know you from some where?' 'Um, no, I'm just here a lot. This is my fourth visit since October.' 'Are you sure? Do you work here?' 'No. I just visit a lot.' That was just the first nurse, then there is the nurse who takes you to the procedure room and back out - she's nice with the long Greek last name (she's not Greek, her husband is), and the other nurse who was in the pre-op area. I know them all. Now they recognize me too.

While I was waiting my turn for a little medical fun, an employee tripped and fell right behind me. I didn't see the fall but the Greek named nurse did. All I can say if you fall, be sure to fall in a hospital as five nurses came running with gauze for blood, ice packs, a wheel chair etc. They insisted the fallen employee take a seat in the chair across from me - I knew her too. She is the woman who is the friend of one of the women from my support group and preps women for the breast biopsies and ultrasounds. She's very nice and funny. And was really mad at herself for the big to do over her little fall - but was happy for the ice on her hand and chin.

That was just yesterday. I recognize a lot of the others - the nurse in endocrinology who clearly came from some former Eastern European republic as she has the accent and a very cranky attitude. Or the nurses up in pain management are very nice - the one who schedules the 'medical adventures' is very accommodating as well as good at finessing the system as needed. The check-in desk for orthopedics has very nice fake flowers that I always admire while waiting in line.

The hospital has nicely added flat screen TVs to many waiting rooms in recent years so we are no longer stuck with 'do I flip through this boring magazine or try to avoid looking at other people moments' we can gaze stupidly at the 'boob tube'. There is a piano in the lobby and occasionally there is someone there playing it as well.  I have preferred parking areas in the giant garage. I hate that dilemma - where is the damn car? I try to park consistently so I can find it again without overtaxing my tiny brain.

The cafeteria has been upgraded and they nicely label which ones are heart healthy and provide many calorie and fat gram counts. But they also sell cookies and chips if you have a 'bad' appointment and need some sustenance. The best cell phone reception is in the cafeteria by the windows. The reception in the lobby borders between awful and non-existent. And there is free wi-fi everywhere.

I think I visit there too much. I recently had a month of no visits. That is now over. I go back for another round of medical fun on Monday. I can't wait.

Thursday, February 9, 2012

Do you want the truth?

Do you want the truth from your doctor? Of course we want to hear the truth. BUT. Are we really sure about that? I mean we want our friend to honestly tell us not to buy that dress because it makes you look fat. Or we want the home improvement contractor to give the honest date they will be done with the renovations.

But sometimes a little blurring of the facts can be a welcome respite from reality. The truth may need to come out at appropriate times. If there is an 95% survival rate for a medical ailment, do you really want to know that ahead of time? Or do you want to be told that most people come through it fine? If you are told that number of 95% are you going to fixate on the 5% that don't make it? If you are diagnosed with cancer and the doctor starts running on and on about 5 year survival rates and tells you its only 87%, do you really want to hear that number? Or do you want the doctor to say things like 'we are optimistic about your treatment and most people do quite well with it' Eventually you will find out the survival rates and can absorb them.

I know one woman with her cancer diagnosis, she told her doctor she didn't want to know any numbers - not her cancer stage, or number of positive lymph nodes, or anything. She just wanted to focus on treatment. Eventually she did find out all her stats but it was on her time.

A big hot button in the news this morning is that doctors are not completely honest with their patients. There are two parts to this issue - one in telling patients about prognosis and expected outcomes and the other with revealing their alliances and payments with drug and medical device manufacturers.

For the first issue, I think I want some information but only want hard details and numbers at a slower rate. At the end of my breast cancer treatment, I finally screwed up every brave nerve I had and asked my oncologist what he thought of my prognosis. I would not have been ready to hear it earlier, not that it was bad but I wanted needed to go through treatment with as much optimism as I could attain. Although doctors may not be as forth coming about outcomes and expectations up front, they also need to retain some compassion and explain as much as the patient wants. If you over whelm a patient with a poor outcome, you can send them spiraling into depression and despair. There needs to be a balance.

But if there has been an error in my care, I want to know about it. When I had my gall bladder out, in post op there was a giant bruise spreading across my stomach. From the nurse's comments I knew that was unusual and it was the largest pain area during recovery. It appears the surgeon was a bit heavy handed at some point - even though they were four tiny incisions, the tools used my have been pretty forceful to leave a bruise. But did he ever mention it to me when checking on me? No. Did I bring it up? No because I was in the post anesthesia haze for a while and my brain didn't function properly. As a result, I am fine but will probably avoid having the same surgeon again.

For the second issue of revealing affiliations and payments with medical manufacturers I think my stance is pretty clear: treat me based on what I need not on the weight of  the doctor's wallet.

Most of the time honesty is the best policy but sometimes a little fudging can be appreciated.

Wednesday, February 8, 2012

Penalizing patients

This obviously exposes a glaring loophole in how insurance companies plan their premium rates. After having low increases this year, the insurance companies now say that rates will go up substantially.

"Even as Massachusetts business and government leaders celebrate the most modest premium rate hikes in years for small employers and individuals, speakers at a health insurance seminar here yesterday warned that the main trend restraining bigger increases - fewer people seeking health care in the past year - already may be changing.

“We definitely are starting to see some uptick,’’ said Martha R. Temple, president of the New England market for insurance giant Aetna Inc. “The economy is turning up. And we think we may see, sometime in 2012 and 2013, the utilization tick up to historic levels.’’ That could mean a return to the double-digit annual increases of the past decade.

Massachusetts insurers have been able to limit base rate premium increases - they average 1.8 percent for the period starting April 1 in the so-called small-group market - in part because the weak economy caused many people who lost jobs or were afraid of losing them to delay elective procedures, speakers at the conference said. But as the economy strengthens, they expect more people will return to doctors and hospitals, driving up spending on medical care."

"Insurers said they were able to limit base rate premium hikes partly because they had planned for higher health care use and also because they were starting from a larger premium base after years of hefty increases. Many employers pay more than the base rate because of additional factors such as their location or the age of their workforce."

If I think about this with my non-business, non-medical brain, I would assume if more people are insured that means there are more people paying premiums - not all uninsured people were sick people, they just didn't want or couldn't afford insurance or health insurance was not available to them. You would think this would help the insurance companies - they may be insuring more people and paying more claims but more people would be helping to pay for them.

Also, I would think that insurance companies would know how to manage their costs to account for the fact that people will use their health insurance when they have it. Premiums should not go up because people use their insurance. This is like the company in California, that I blogged about a few years ago, who wanted to increase premiums by as much as 70% because they were insuring sick people who used their health insurance because the healthy people who didn't go to the doctor had left the plan because the rates were so high.

This is penalizing the patients for using their health insurance and going to the doctor. I'm sorry but I think insurance companies need to rethink how they determine premiums. This is the same if you file a claim with your home owners or car insurance and then your rates go up. Insurance is there to help you in case you need it. It is not working if you are reimbursed or covered for something and then your rates go up - meaning you pay the insurance company back for everything they saved for you initially over an extended period of time.

This is a broken system where insurance companies are winning and the patients are losing.

Tuesday, February 7, 2012

Statistics dont tell the whole story

I have been very happy and comfortable with the quality of my health care. I live near Boston the home of many world class hospitals and the quality of care available in the area is very good. Or so I thought. just released their latest list of top cities for health care. So I wanted to see where Boston was on the list. Its not. Neither is New York City.

I was surprised to say the least.Then I started thinking - a very dangerous proposition at times. This is a classic example of how statistics can be misleading. These numbers are looking at the level of care across an entire metropolitan area. While this includes the leading hospitals, it also includes small and large medical centers that may be underfunded or serving a sicker population who are going to have statistically worse than expected outcomes due to their overall health.

So I went through and looked up where I am treated and feel slightly better. Then just for the hell of it I looked up Dana Farber. They have all sorts of physicians listed, many of them have no ratings. And they had no surgical procedures listed. Hmmm.... So what is their rating? I don't know.

More advice on statistics. Ignore them.

Monday, February 6, 2012

Hospitals making profits on their patients

We assume the hospitals that treat us are primarily concerned with what is best for the patients. Um, yeah, sure. Federal Investigators are examining single night hospital stays from 2000-2005 at Beth Israel Hospital in Boston to see if Medicare was being billed for unnecessary stays.

One side of the issue is that are patients being kept overnight for observation solely so that the hospital can reap additional income. We try to believe that hospitals are always looking at the patient's best interest but they are businesses with a bottom line. So maybe they do keep patients in when they shouldn't so they can get the additional income. Which I think is crazy - I mean nurses and doctors already rightly state they are often overworked - so why admit patients when they would do just as well at home in their own beds.

The other side of the issue is that are insurance requirements too strict and too quick to send people home when they would benefit from a night of observation?

BI is not the only hospital to have this kind of inquiry and others have resulted in fines and settlements. It is all part of the effort to reduce medical costs. If a hospital thinks they can further overwork their employees and their patients kept unnecessarily overnight just to raise their bottom line, they are not looking out for their patients.

Sunday, February 5, 2012

Exercise, Schmexercise

Go exercise they tell us. (Who are 'they' anyway?) We say we will but do we ever? Have you seen the commercial on TV about the couple who makes the lamest excuses not to go to the gym? I can't even remember what its for but I just remember some really lame excuses. I have used some myself - 'I don't feel like it', 'I have to clean the cat box', 'I went to the gym yesterday', and 'I need to catch up on my DVR watching'. If you want more, I'm happy to come up with them.

Truth be told, I used to go for a daily walk but I wasn't deflabbing properly so I joined a gym which I never went to because the machines were complicated and they made my back hurt. So then I joined a fancy gym with trainers and many dilapidated people like me. They gave me an exercise plan which accounts for my dilapidation. I have since learned that I can only go to the gym every other day. If I attempt to go two days in a row, my body revolts and I end up horizontal as I recover. My current solution is to go to the gym Monday, Wednesday, and Friday and go for a walk on one of the weekend days. I did not go yesterday. This means I need to go for a walk today even though its colder out today. Maybe I'll be whiney as I go for my walk.

Exercise is a good thing. It doesn't have to be as complicated or as expensive as going to the gym - you have two feet so use them.  I can go on and on about exercise at any time but here are some real facts from professional medical people who actually aren't making things up:

Research has shown that exercise can help:
  • keep your body fat at a healthy percentage
  • keep your weight at a healthy level
  • lower your risk of many diseases, including breast cancer
  • reduce the risk of breast cancer coming back if you’ve been diagnosed
  • keep your bones strong and ward off osteoporosis
  • improve your mood
  • improve sleep quality
That little line about lowering your risk of cancer is a subtle hint. But I am proof you can get cancer even if you exercise. So all this tells us is 'they' (whoever they are) don't know crap. 

Saturday, February 4, 2012

Let's take the politics out of health care

I know this is a novel idea but I really think we should take the politics out of health care. When we are worried about our health, we go to the doctor. Do we ask our doctor which political party they belong to? No because it is not relevant. Do health ailments discriminate against certain political stances? No. If I could become healthy by switching political parties, I would be happy to.

So why has health and health care become a political issue? The recent Komen/Planned Parenthood brouhaha has brought this issue to the forefront. No health issue and access to health care should have its availability compromised based on politics. National health reform is also tainted by this as well. The purpose of national health care reform is to make health care accessible and affordable to all. That's it. The end result should be saved lives. I don't have problems with that one. People who are alive are happy people.

But why do politics need to get involved with health care? In the case of the Komen/Planned Parenthood PR disaster, accusations are flying regarding people's stance on abortion which is a political hot button. From their website:

"For more than 90 years, Planned Parenthood has promoted a commonsense approach to women’s health and well-being, based on respect for each individual’s right to make informed, independent decisions about health, sex, and family planning."

Only 3% of their services include abortion which is THE issue, that means that 97% of their services are not related to abortion. (I personally don't care what you think about abortion because that is not the issue here.) My opinion is that this is about accessible women's health care. Women of all political beliefs, races, creeds, religions, heights, weights, and ages need access to health care. If they can't afford it, they need to have resources to help them. By politicizing the access to health care, women will be denied it. How much sense does that make? It doesn't.

So let's get the politics out of health care.

Friday, February 3, 2012

I have no inspiration this morning

I have put myself in to a corner. I always blog every morning and feel if I don't blog people will wonder what happened to me. I very rarely skip a day - only when I am far, far away from internet access - which still can happen. Last time that happened I had to leave the country. But now I feel guilt if I miss a day - am I letting down my loyal readers - who ever you may be? I know people read my blog (because I can see statistics that tell me how many of you there are each day) but I am not sure I know who most of you are.

I usually keep a mental list of topics to write about which is usually based on current tabs open in my browser. This monring I have three tabs waiting for me to write about - how the farm bill will affect consumers, the latest issue of Artemis from Johns Hopkins which is always good for some technical medical stuff, and an article where I am trying to dig up sympathy for the drug companies who claim they will have a bad year in 2012. I am just not motivated.

Maybe this is because I am over scheduled today. I hate it when I do this to myself but I have four appointments today which involve driving from one to the next. I also need to go to the grocery store, the drug store, and return something at HomeGoods. I really wanted to stop by the new consignment store I heard about. And I need to do some work today. Oh and my back hurts.

Otherwise, I am doing okay these days. I don't think I have blogged about my health recently. My biggest problem is my back these days (and that pesky cancer crap). I am having a radiofrequency ablation of nerves in my spine (heated needles stuck into my back while I am thankfully sedated) next Thursday which should help. Then I want to talk to my doctor about my pain meds which don't seem to be helping much. I do have a six month follow up and ultrasound with my endocrinologist coming up as well as a six month visit with my oncologist. I am just ignoring them until they happen. That is my superior 'fight or flight' mentality that keeps me sane.

But life goes on. I bit the bullet and upgraded to the new Facebook timeline without having a nervous breakdown. I am now ignoring the Komen/Planned Parenthood controversy as I blogged about it yesterday and got it out of my system. I believe there is a presidential campaign going on which I am ignoring. I also think there is a big football game this weekend. We will have some special snacks, I will read a book during the game, and watch the commercials until I get bored - which could only be in the first quarter. I have never figured out football and don't think I ever will but I am happy to explain the fine details of figuring skating and most of its new scoring system if you ever have a question.

That is my uninspired blog post. We will return to regular programming tomorrow (I hope).

Thursday, February 2, 2012

Following a controversy

I am always interested in controversies. Anything that is controversial makes news - which sometimes often gets over-hyped by the media and ends up boring us to death because there is too much. What I find most interesting about controversy is how the controversial behavior is handled by the two sides. There is always controversy - we can't escape it. If we do something wrong, do we apologize or do we run away? An apology or explanation is a good way to handle something, running away, avoiding the issue, or worse a bad apology is a bad way to handle it. This applies in every part of life - there is no getting around it.

The latest controversy in the news is that the Komen foundation has announced they will no longer fund Planned Parenthood. Actually what they did is decide not to renew a grant. If you read the news articles that were first made available yesterday:

"Susan G. Komen for the Cure, a leader in fundraising for breast cancer research and famous worldwide for its iconic pink ribbon, said Tuesday that it was halting all partnerships with Planned Parenthood affiliates because of recently adopted criteria that forbid it from funding any organization under government investigation.

In September, Rep. Cliff Stearns (R-Fla.) launched an inquiry to determine whether Planned Parenthood uses public money to fund abortions. Planned Parenthood receives federal money but cannot use it to provide abortions.

Komen has a long history of providing funding to various Planned Parenthood affiliates for such services as manual breast exams and referrals for mammograms and biopsies to check suspicious lumps for cancer. Although that money is not used for abortions, the Komen Foundation may have yielded to demands from antiabortion groups to sever its ties to Planned Parenthood.

"We had the sense this was coming and that they were under pressure," said Sue Dunlap, chief executive of Planned Parenthood Los Angeles. "I find this really disappointing. I think when women's health is more of a political conversation than a conversation about healthcare and taking care of people, then we've gone too far."

Officials for Planned Parenthood Federation of America said they learned of Komen's new stance on funding late last year and asked the Komen board of directors for a meeting to resolve any issues or questions related to funding. The meeting did not take place, said Cecile Richards, the federation's president.

"We are alarmed and saddened that the Susan G. Komen for the Cure Foundation appears to have succumbed to political pressure," Richards said in a statement. "Our greatest desire is for Komen to reconsider this policy and recommit to the partnership on which so many women count."

Over the last five years, Planned Parenthood has provided about 4 million breast exams and referrals for 70,000 mammograms nationwide. Funding from Komen covers about 170,000 of the breast exams and 6,400 mammogram referrals, Richards said. Although mammograms and biopsies are referred out, Planned Parenthood doctors manage their patients' cases.

This sparked a sense of outrage all over - this was the hot topic of the internet yesterday - it was more popular than Justin Beiber, the presidential election, and the Facebook IPO combined. The outrage centered on the potential political slant of the decision.

The Komen foundation itself was decidedly silent on the topic itself which was to its detriment. I call this poor handling. The silence allowed people to polarize and express their fury again and again.

This morning I received a link to an official video of Nancy Brinker explaining their position and why they made the decision. I call it a non-answer:

She does not address the issues of the controversy. She states they are staying true to their cause and the promise to her sister. She talks about changing their grant policies. She does not talk about the statement from the Komen foundation about not funding organizations under investigation. She could be talking about any decision, not this one.

A non profit owes it to the donors to explain their decisions. People won't donate to places which upset them. They donate to places which they feel support their beliefs. It is hard for a donor to believe in an organization which doesn't explain their decision.

And now we have reports that Planned Parenthood received a record $650,000 in donations in 24 hours - which basically replaces the Komen grant money they will no longer receive.

This is a controversy which I believe was poorly handled by Komen. The proof is in the money.

But I am sure the media will beat this to death for the next six months until we are bored.  We need a new scandal fast so this one will not be the controversy which would not go away.

Wednesday, February 1, 2012

Thank you for making me feel insecure about my treatment

I hate these articles. This one discusses the lack of guidelines for what kind of clean margins are needed for whether a re-excision is needed after a lumpectomy. First let me say, thank you for upsetting potentially hundreds of thousands of women who had a lumpectomy and may or may not have had a needed second surgery or had a second surgery unnecessarily. This isn't something that really can be undone. If a second surgery was needed and wasn't done, there is probably nothing that can be done now. If a second surgery wasn't needed but was done, you really can't undo surgery.

Second, the general media is not the place to discuss undetermined medical guidelines. These should be discussed by the people who practice medicine, not by the patients. As a patient, we assume that we are given proper medical care. We assume our doctors follow guidelines and protocols. We don't want to hear about the lack of guidelines that may have led to improper care.

Also, I assume that the hospital where I am treated has its own guidelines and protocols something that is not discussed in this article at all. It makes us patients feel like we may have been mistreated. I know, as a professional patient and not as a medical professional, that the hospital I am treated at has established guidelines for what is the current protocol for chemotherapy or preparation for some lovely medical adventure. So is this article saying there are no guidelines followed anywhere?

So I am so 'not' comfy with my medical treatment after reading this. I will now go have some breakfast and attempt to think positive thoughts about something else.

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...