Happy Halloween!

Today is Halloween. There should be no more Pinktober. There should be lots of kids around here dressed up in Red Sox uniforms with fake beards. There should be no more Pinktober. There should be candy bowls everywhere making dentists cringe. There should be no more Pinktober.

I am wearing an orange shirt and black pants and sweater to work to add to the mood. If I can find my hat from Cirque du Soleil, I'll bring that a long as well. There is no Pinktober.

I'm just happy all the Pinktober crap is over. Let's see if we can minimize it for next year.

Waiting for the end of Pinktober

At the beginning and end of September I asked all to take a pledge to avoid pinkification and wasting money on pink things that do not help cancer research. It is still not too late to take the pledge for 2013.

I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services. 

I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.

I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.

Thank you.

Today is the second to last day of Pinktober, formerly known as October. Did you research causes to ensure they were legitimate? Did you arbitrarily purchase pink items?

Its not too late. You have 36 hours or so to still make a difference without being pink. If you did help in pinkification, now is your chance to take a step back and reevaluate what you did so you will not repeat again next year.

You may think I am being redundant here but I do feel strongly about this. Ridiculous amounts of money are spent on cancer awareness causes, of which Pinktober contains the worst, that are unnecessary.

What is necessary is money for cancer research. I do not think anyone ever the age of 10 living in US, Canada, and Northern Europe who is not aware of cancer these days. We have all 'been there, got the t-shirt'. And cancer still has no cure, along with many other diseases such as Rheumatoid Arthritis, Cystic Fibrosis, diabetes, and more.

Skip the awareness, skip the t-shirt, and help with research.

Please take a moment to reflect on your contributions to pinkification this year and see how you could change your efforts next year to help with research instead of another t-shirt.

Sleep - ever so elusive

A side effect of all my ailments seems to be fatigue. I get tired. I mean I get really tired. Meaning last night I came home from the gym after work and put on my PJs at 530 and convinced let my husband that he should cook dinner because I was so tired.

I was so tired I went to bed at 7pm (seriously). I read for a while and could not fall asleep. I shut off the light about 830. At 945 I was still awake. I think I feel asleep around 11.  I didn't sleep very well.

The alarm went off around 5 when it always does. We ignore it until 530. My husband got up, took a shower, read the paper, brought me coffee, and alternated trying to wake me up. Finally at 608 I woke up. More than half an hour late. But by rushing around, I should be at work on time.

This is an ongoing problem. I have problems getting comfortable so I can sleep. Usually I fall asleep on my back but sometimes it hurts too much. I often take a pain pill before bed because my rheumatologist says it should help with morning pain. I can take a different pill to help me sleep but I don't like to take it every night and last night, for example, it didn't do squat.

Maybe because I had three Hershey nuggets after dinner - do they have caffeine? I don't know but I'll skip them tonight.

Then I am tired which compounds the fatigue. Its an evil vicious cycle. I need a nap. Damn. I'll postpone that until after work.

I needed a time out

My  life has been a little crazier than normal recently. Both my parents have had health issues. My health has been its usual (un)cooperative self meaning if its not one ailment its another which speaks up and ruins my day. It is craft fair season and I am actually trying to make some money selling my knitted and crocheted projects at them. I am in the middle of a huge paid volunteer project with a very strict deadline. And I never seem to get enough rest.

I needed a time out. I also thought my husband had been a bit neglected and wrapped up in his own stuff as well - at least he is healthy.

We ran away for the day. Yes it is October. But we went to the beach...

It is one of our favorite things to do - or at least my favorite. We woke up to rain but it cleared out and we had a clear blue sky. We got there for low tide. I found a nasty piece of broken glass and threw it out. I found a nice big whole sand dollar and gave it to a little girl who ran off to show her parents.

I saw a big piece of drift wood that looked like it was part of a very old ship wreck which surfaces periodically on the beach.

I waded in the ocean - it was a little cool.

Then we went out for an unhealthy meal of fried seafood.

But I really needed it.

I came home and got some of my volunteer work done. We had a light but healthy dinner and went to bed early. Today I feel a lot better mentally. I needed a time out.

Don't believe everything you read or hear

The majority of that 'research' online and in the news is wrong. Or biased or incomplete. In other words, not credible.

This is what happens. Journals which are peer reviewed, meaning a medical journal where all articles are reviewed and approved by a board of doctors before being published, are full of credible information. That is good information.

But then there are many other magazines and journals where researchers send their results to get published. If you get published as a researcher it adds to your credibility and CV so you can build pages of publications so it gets to be nice a long which is a positive think the research world.

Journals are always trying to find ways to fill pages. Some journals are ad free which are published by associations who pay for their publication through member dues and other funding. Magazines which have ads are stuck between a rock and a hard place. They want the ads to pay for their publication but are required by law to have a maximum percentage of pages of ads vs. pages of articles. So the more articles they have the more ads they can have and therefore increase their revenue.

They will publish anything that looks credible.

Then articles get picked up by the media and blown out of proportion and we all get scared and hyped up to avoid BPA or food additives or Vitamin C or red wine (next week white wine).

I am sure I have blogged about this in the past. The advantage of chemo brain, fibro fog, tamoxifen fog, and whatever else I have is that I can't remember squat. But this time I have an article which explains how the whole BPA thing was based on poor data and sampling but hen got picked up by  the media and all the manufacturers got right by getting us to buy new water bottles without BPA.

So don't believe what you read no matter how much it is splashed all over the media. Wait for additional verification. And use your common sense.

Politeness and compassion matter

Its not your imagination but people these days I think are ruder in general than in the past. You heard about the rant by the woman her husband put on Youtube.... Or the trolls on Facebook who snipe at innocent people. Never mind the people who cut you off in traffic or exhibit road rage to a life threatening degree. Manners including please and thank you seem to have gone by the wayside. Thank you notes? What are those? Compassion? What's that? Privacy boundaries are gone as well. But do not let me get too far off track.

But its not just the general public. The newer doctors are exhibiting lack of politeness and compassion compared with more established doctors. Maybe they will acquire some politeness and compassion over time but int he meantime the patients suffer.

A study at Johns Hopkins showed that the newer interns didn't take time to introduce themselves to the patients or to sit and have an eye to eye conversation with them. The problem is that good bedside manner on the part of the doctor improves patient outcomes.

"The observers recorded whether the interns used five valued communication skills like introducing themselves, explaining their role to the patient, touching the patient, asking open-ended questions like, "How are you feeling today?," and sitting down with the patient for a conversation.

In some areas, interns scored high. For instance, they touched their patients 65% of the time (though that was sometimes in the process of giving physical exams) and asked open-ended questions 75% of the time during hospital visits. But interns only introduced themselves 40% of the time and explained their medical role 37% of the time. The interns sat down with their patients only 9% of the time.

In total, interns only performed all five behaviors during just 4% of their visits."

This week I went to a doctor appointment with my father. The doctor was running late and he stopped by the room where we were sitting to tell us he was coming but was running late. (Points for him). He introduced himself to me (more points) and greeted my father very nicely. He sat down and answered questions. He also asked open ended questions and was extremely patient with my father's questions even sketching diagrams. 

We left the appointment with a good deal of comfort in that he was the right doctor and would offer the right treatment.If the doctor had been abrupt and not communicative, we probably would not have the good feelings. Politeness and compassion do matter.

Fear of cancer

A by product of raising cancer awareness can be increasing people's fear of getting the disease. I think that often in the back of people's minds as they donate or pinkify in someways is "I really hope I don't get it". With Angelina Jolie's decision to have a prophylactic bilateral mastectomy because of the BRCA gene and the ensuing publicity, more and more women are concerned about their risk of getting breast cancer.

While breast cancer eventually impacts one in eight women by the age of 80, it is much less common in younger women. Most cancers are also discovered at the early treatable stages.

The BRCA gene, which Ms. Jolie has, is only responsible for about 5-10% of breast cancers. If you have relatives who died of ovarian or breast cancer at a young age, you probably should speak to your doctor about being tested for its presence.

If you do have the gene or have a strong family history of breast cancer there are still options available to you instead of a bilateral mastectomy. You can take Tamoxifen. You can skip surgery and medicine and opt for an aggressive screening schedule - particularly if you have not yet had children and plan to do so.

You can still get breast cancer even if you don't have any risk factors (I didn't) at a young age (mid-40s) - anything under 50 is considered young for breast cancer. You can eat right, get exercise, blah, blah, blah.

There is no reason to fear breast cancer or any other cancer or medical ailment. If you spend your life in fear of getting sick, you are not living, you are hiding.

My body is in such bad shape right now. My doctors are amazed at the amount of osteoarthritis I have in my knees and I tell them I worked hard for many years to get into this shape - snap, crackle, and pop every time I bend my left knee from years of skating, skiing, roller blading, hiking, and much  more. I had fun for a long time. Now I still have fun and don't hide from what might happen but I just move at a slower pace.

I am skilled

In the past few days I have had the opportunity to share knowledge and decipher the oncology department. It turns out hanging out in the Cancer wing gives you ins on all sorts of special information:

• I know the receptionist - not just because she has been there since I started going there in 2007 but she also used to work out at the gym I go to where her cousin was a trainer. 
• I could explain about the special amenities in the oncology waiting room - the lunch and snack trays that come through earlier in the day.
• I know they do validate parking - its the least they can do for their oncology patients.
• They have the nicest nurses and staff who regularly go the extra mile (I'm  not saying that other nurses and staff don't do this but there seems to be extra concern and caring in oncology - this may be due to the frequency of patient visits).
• I know the best place to park which involves the least walking to get to the far away oncology wing.
• I know all the credible online resources and which ones to avoid. 
• I could spell most of the big words the hematologist shared with us.
• I knew what questions to ask to get to the next steps.

So I guess cancer gave me some skills. I am an educated patient in some respects. And it wasn't about my health.

Is Pinktober less Pink this year?

I know I have seen a fair number of pinkified items - my mother was horrified to find her newspaper printed on pink paper earlier this month. There is an absolutely horrible and disrespectful pink ribbon Halloween costume - a clear example of pinkification. I have read many articles on local events for breast cancer. I have heard of a few buildings lit up in pink. I have been approached by fewer people to participate in pinkness.

But it seems like less pink than in the past.

Anyone else?

I sincerely hope that the peak of pinkification and pinkwashing has passed. The rise and fall of the Komen organization I am sure had an impact on it. The message of overdone awareness may be finally getting through.

I mean we have had a fair number of distractions this month that is supposed to be for breast cancer and liver cancer awareness thanks to all the idiots in Congress - both parties. (I do not usually comment on politics here but at this point all members of Congress are idiots for their insistence on 'my way or the highway politics'. That is the extent of my political statement today.) Also the roll out of the Affordable Healthcare Act has been a disaster due to the website issues. 

These may have sucked the headlines away from pinkification. I have also had a fair number of personal distractions on top of everything else.

I would be very glad to see the end of pinkification. So I hope I am not the only one to feel this way.

They did it again

I hate it when this happens. A medical standard protocol is decided to be not good and may cause long term harm. I find it frustrating. I go to the doctor and get the best care I can. I do my part to cooperate and take my pills or whatever is decided is best.

Then they change their minds.

For many years, TSH (Thyroid Stimulating Hormone) was suppressed as much as possible - to barely traceable levels - maybe 0.3 or 0.4 whatever thingys they measure by. The theory was to keep it as low as possible to prevent possible recurrence of thyroid cancer.

Now they say keeping it that low doesn't provide additional benefit in preventing recurrence but can also contribute to osteoporosis in patients.

"Wang concluded that there's no recurrence benefit with TSH suppression, but an increased risk of harm, particularly for osteoporosis in women, and care should be taken with regard to TSH suppression in these patients who've had thyroidectomy for low-risk disease.

Ronald Koenig, MD, PhD, of the University of Michigan in Ann Arbor, who was not involved in the study, said the findings "raise the question of whether TSH suppression is in fact necessary."

"More data are needed from a larger series of patients to inform practice guidelines, but these findings are potentially impactful since they highlight an area where revision might be indicated," Koenig told MedPage Today.

While I do have a strong family history of osteoporosis, I was diagnosed with osteopenia, the  precursor to osteoporosis in my late 40's which is very early). Right now it is stable but the usual only trend is downward.

Could this be linked to my suppressed TSH levels for the past 32 years? There is no way to tell at this point. But thanks for making the change an making me doubt my medical treatment.

I am confused

I admit to being confused. I have rheumatoid arthritis. I am on injected methotrexate. Am I supposed to be feeling better? Because I am not. I keep forgetting to ask my rheumatologist about this.

I know I have other pain causing ailments - degenerating disks in my back cause pain in my lower back. I know all about these pains. If I bend over to pick things up, my back reminds me I should not - never mind that you are supposed to squat and lift with your knees. But that is one set of pains.

Then I have the fibromyalgia induced pains. Those are the ones which are not back pains or rheumatoid pains. They appear as things like bone deep pain in my arms or elecgtrical pains across my lower back.

And I have osteoarthritis pains. That is when my  knees crunch when I bend them. I have Snap, Crackle, and Pop and their extended family reunion living in my left knee. And my right knee and a few other assorted places.

But I know I have RA pain in places that never really feel better. This includes my hands where my knuckles always feel inflamed and swollen. My wrists, my shoulders, my ankles, and my feet. And other places that are symmetrical. RA pains are easier to pin point as they are symmetrical. I am on medication and anti-inflammatories but they are always there.

If I judge my health based on the television commercials where people are moving about freely while they are on medication for their RA. I clearly not atfor a commercial any time soon.

But my real question is am I supposed to not have pain from my RA? Or is the treatment not working or am I living in a constant flare? And combined with fibro fog and fatigue, I am a walking disaster.

I think I need to write myself some notes and bring them with me to my next rheumatologist visit in January. Crap. That's a long time from now.

I still think there is something else...

I know I have chemo brain. I had chemo and my brain has gaps and I cant remember things. I know I have fibro fog. I have fibromyalgia and now I can't remember names or words for things.

But now I know I also have 'cognitive decline from breast cancer hormone treatment' due to my Femara treatment.

""Decline in cognitive function is common in patients receiving adjuvant therapy for early-stage breast cancer," concluded Dr. Rugo, director of the Breast Oncology Clinical Trials Program at the University of California, San Francisco. "Ongoing hormone therapy appears to be a risk factor for worse cognitive function."

I'm doomed. I can't remember anything these days.

But I still think there is something else that I can't remember....

The emotional breakthrough

In a few weeks I am going to get together with some friends. When we were all diagnosed with breast cancer, we belonged to the same 'introductory' support group. Six years later we are still in touch and get together. I have been bad recently and haven't made it to some of the recent get togethers - between being sick and on vacation, I missed more than a few.

One member of the group passed away a few years ago. When she was in our group, she was on her second diagnosis and later had a recurrence. We supported her through more chemo. We still miss her.

Another member was diagnosed with stomach cancer a year and a half ago with metastases (from one of the cancers - I'm not sure which or even if she knows - to her bones). She has been through chemo twice now and she just had another PET scan showing her bone mets have progressed. She recently started chemo again.

She is struggling emotionally with this because I think she finally she is realizing that this is the way her life will be. Chemo followed by scan, more chemo or other treatment, throw in a few clinical trials, and more tests and bad news.

I have other friends who are in stage IV. Some of them cope better than others. Some family members cope better than others as well. I think, now I have never had stage IV cancer so I am supposing here, that there is an emotional breakthrough when they finally realize that their treatment will never end in a positive fashion.

Some people take it better than others. I know people who at the stage IV diagnosis, start saying they are terminal. The friend I am seeing tomorrow, and many others, were seeing the world with rose colored glasses, and assuming that life will continue to go on.

Eventually they come to the realization comes and they have the emotional breakthrough where they realize that they are living the life of the metastatic patient with chemo, trials, scans, and more and it won't end positively.

Breathing causes cancer

I knew it would come to this. Everything has been researched to the nth degree, millions of researchers have been employed, everything has been dissected, ressected and digested. We have been told that no salt, no wine, no chocolate, lots of vegetables, lots of fruit, get exercise, no we were wrong red wine only, dark chocolate only - and only in moderation (whatever that means), not those fruits but blueberries and other things you have never heard of. We have tried to decipher diets, pyramids, and scams.

But now they tell us. Breathing causes cancer. Actually its not the actually breathing that causes caner but what we breath - air pollution - which causes cancer.

So while this is the active theory, we all need to move out to the wilderness and set up individual homes with solar power (because coal and wood smoke cause air pollution), grow our own fruits and vegetables (but only the right kinds). And grow them organically.

In the meantime, practice holding your breath so you breathe as little as possible to reduce your risk of getting cancer from air pollution. Once you turn blue, more research will be done to figure out how you can avoid inhaling more air pollution.

The impact of the decision.

The doctor makes a decision but do they stop and think about the impact? We hope so. But not always.

Here's the story of a 51 year old man who was admitted to the ER with liver and kidney problems. He needed to be stabilized before they could do necessary surgery. Stabilizing was not easy and not even sure that it could be done. He was in intensive care. Two internists stopped by to see him and in less than ten minutes decided what he needed was comfort care and not intensive care. So they moved him out of the ICU and into a regular ward where he died the next day.

What went wrong? Several things but the main one was the decision by the two internists to move him to a general ward for comfort care. A patient with multiple organ failure needs ICU if they are expected to survive. But to the younger interns, perhaps he was an older patient where he was ready for the end of life? But if he had been young, would more effort been made?

Also, was he a terminal patient? Or did he have a terminal disease? Could he have survived with the proper care?

The author concludes with:

"Perhaps what bothers me most is less the fate of our patient than the memory of those two doctors, both so young, efficiently dispatching a complicated decision in a matter of minutes, then dancing off without looking back. They knew a lot about the cost-effective deployment of intensive care. It would have been good to see them spend a little time struggling with the limitations of their analysis."

This is what bothers me - are we raising a new generation of doctors who don't think about the impact of their decision?

Passports should be required for Cancerland

Cancerland should require passports, visas, and planning. Its a strange world of different cultures, languages, and mystery. The never ending wait until the next scan, procedure, adventure. We'll wait and see what the next tests show and then decide on the next steps. I have tried to describe it before but never come close. This is the absolute best description of life in cancerland in the hospital I have seen:

"At diagnosis, incomprehensible words resound — HER2-positive, stromal, non-small cell, BRAF, astrocytoma, myeloma, lymphoma, sarcoma— followed by equally baffling prescriptions of drugs that have two names. Hours are badly spent waiting in interior reception areas, near stunned people in wheelchairs and dazed fish aimlessly swimming in a tank beneath a television (perpetually tuned on to a dismal news channel).

After a bed is assigned for some necessary procedure, most slip on skimpy robes — the snap type impossible to snap, the tie type impossible to tie. Why are they constructed so as to gape and expose the naked front or back without providing warmth against the polar climate? "

Read the whole thing here and then you might have a clue if you have never been there.

This is what life in cancerland while at the hospital. The problem is you never really get to leave it once treatment ends.

Someone else is getting rich here - and its not the patient

I have often wondered why medications are so expensive here and so cheap in other countries. I read this really long article, which focuses on asthma drugs but can be applied to any prescriptions:

I learned this:

"In all other developed countries, governments similarly use a variety of tools to make sure that drug manufacturers sell their products at affordable prices. In Germany, regulators set drug wholesale and retail prices. Across Europe, national health authorities refuse to pay more than their neighbors for any drug. In Japan, the price of a drug must go down every two years. 

Drug prices in the United States are instead set in hundreds of negotiations by hospitals, insurers and pharmacies with drug manufacturers, with deals often brokered by powerful middlemen called group purchasing organizations and pharmacy benefit managers, who leverage their huge size to demand discounts. The process can get nasty; if mediators offer too little for a given product, manufacturers may decide not to produce it or permanently drop out of the market, reducing competition."

So basically here in the US we are held at the mercy of the drug manufacturers and their middle men.

And here's this little kicker. The manufacturers always say the research costs drive up the costs of their drugs. But how about this little factoid:

"Critics counter that drug companies spend far more on marketing and sales than the 15 percent and 20 percent of their revenues that they devote to research and development."

In the real world, most companies budget a lot less of their revenues for marketing... Do we really need those ads with the disclaimers that make things sound horrible?

So my thoughts now are:

1. We really need a system to tell drug companies we will not be at their mercy and medications must be made available at affordable prices
2. Drug companies are getting rich at the expense of patients
3. Because of the high costs of drugs, insurance companies are getting involved in decisions which should be left to doctors
4. And to the drug companies, I would like to say "liar, liar, pants on fire" to their claim their research costs are what drive their high drug costs.

Making your own medical decisions

The newest trend in medical care is to involve the patient in the decision making process. Sometimes it can be easy to just go with the flow. The doctor says you have this so we need to do that. Simple?

But what if the doctor says 'what do you want me to do for treatment?' Eek! Now you can't sit there passively you have to become a participant. This can take research. It can take time online. It can take deep thought. And it can impact your life significantly.

Using the example of a woman with breast cancer where the choices with relatively equal outcomes are lumpectomy and radiation or mastectomy. Shouldn't the patient get to decide, not the doctor on whether they want disfiguring surgery? Some women do and some don't. But it should be their choice.

The other side of the coin is patients go to the doctor for a sore throat and expect to be sent home with a prescription for antibiotics. And the doctor says we do not prescribe antibiotics for a cold or flu only when there is a need. The patient then gets mad because they feel under treated. This is the result of a change in medical practice that patient's need to keep up on to prevent frustrations.

Let's go back to a cancer diagnosis. The doctors say things like we want to remove the tumor and then do chemotherapy and follow up every three months with a scan. The patient should ask why that order - surgery then chemo, what are the alternatives, what about the patient's other health issues and possibly even age.

The real question the patient should ask is what are my options for the best possible prognosis and why do you consider that to be the best as compared to other protocols? I mean that is the goal after all.

Doctors need to allow patients to ask questions and make the decisions based on the doctors advice. If the doctor doesn't want the patient's input, it may very well be time for a new doctor.


Patients need to learn to set aside their preconceptions on what they think is possible and learn what are the latest advances and what has the best possible outcomes. Then they can, with the help of their doctor, make the best possible decisions about their health.

National Metastatic Breast Cancer Day

Today is the one day for metastatic breast cancer in the middle of all the pinkification. Metastatic breast cancer or any other metastatic cancer is not fun. Its not pink. Its a life of going from scan, to treatment, to scan to treatment.When one treatment stops working they go on to the next one until there are none left. They hope there are new clinical trials available. They endure some pretty nasty procedures and medical (mis)adventures. They grit their teeth and keep on going.

They don't plan for 20 years from now, they hope the make it to the next holidays, next birthday, next family milestone.  They usually leave their jobs and hope they do not live out their remaining funds. They live on social security and any savings but still get medical copays and bills.

There are too many to count but I personally know Joe, Nancy, Rochelle, Lisa, and more. Many others are known through their blogs as well.  Ann, Scorchy, Lisa, Team OBB, and more. There are too many to list. Google metastatic breast cancer blog and see what pops up. Their stories are heartbreaking as they try to make it to their next family event.

The problem with metastatic cancer is while there have been many advances, once cancer spreads or metastasizes, there is no cure. Doctors try what they can to extend the patient's life and keep them as comfortable as possible but there are no promises. This is where we need research.

World Arthritis Day

Every year on October 12 is World Arthritis Day. I did not know this. I think last year on October 12 I was still waiting for my final lab reports back. This year I know a lot more about arthritis. More than I ever wanted to know. I am getting more specialists to deal with my arthritis as well. I feel (as) healthy (as a horse on the way to the glue factory) someetimes.

Anyway, I think I am supposed to wear blue in honor of World Arthritis Day- another reason not to wear pink. If I was really good I would have planned to attend an event or even planned and organized a WAD event. I'm just not that good about these things.

The more ailments I develop the more days and months I get to be distracted by. I will say I can't remember most of them from one year to the next. But I try.

Tomorrow, October 13, is metastatic breast cancer day. Please put it on your calendars.

Patient's skills

This is one of those weeks where family members are the ones requiring medical care and I am the one providing the care. Well, I do a lot of driving. I do not provide medical care. I provide access to medical care. I have found I know lots about the hospital and dealing with hospitaization.

• I know the best way to get to the hospital to avoid any traffic. Other family members may disagree but I never sit and wait.
• I know how to work the TV/computer in the patient rooms without help. I even know how to deal with the separate key board.
• I know when and where to find the nurse to get the real story.
• I know to prompt the patient to ask for meds or to speak up about issues.
• I know where to park for ER visits and where to find wheel chairs.

One family member referred to me as the frequent flyer of hospitalizations. (I may disagree on the actual number but I have been there far too much.)

Its been a long and stressful week or so. I am not the sick one for once but I am the very tired one. I have been getting home from the hospital way too late at night. Last night I arrived home to find in the mail:

• A hospital bill
• A hospital appointment list
• An explanation of benefits from the insurance company

I was too tired to care.

Today I will go to work for the morning and have my leftover Chinese food for lunch. Then I may stop by the hospital again but what I really want to do is to come home and take a nap.

I have decided you have to be healthy and rested to be a caregiver.

Staying pink means staying positive

This has now been decoded. I don't think so.

Fellow blogger, Katherine O'Brien, wrote to Good Morning America recently about the pinkification of the set and show, which I think was Monday but I could be wrong. She asked about why there was no mention of metastatic breast cancer and it was all about awareness. They wrote back:

"The focus of today's report was breast cancer awareness and the visual affect to highlight the need for more research."

"A patient's positive attitude is beneficial in any medical process."

We are supposed to think positive and the world will be full of sunshine and roses and kittens or something.

Katherine made a great video on this which due to my technical skills I can't upload here that you should watch as she does a wonderful job in making her point.

Pink doesn't help. And the TV station needs sensitivity training.

The numbers behind pinkification..

The NFL has decided to cut back on their pinkification... They will stop using pink penalty flags in week 6 - I have no idea when week 6 is but assume it is sometime around now. That is how much I know about football. But do not be too upset as they will still use pink cleats, wristbands, gloves, sideline hats, helmet decals, captains' patches, chin cups, shoe laces, skull caps, sideline towels, eye shield decals and quarterback towels.

The reason given for the stop is that pink penalty flags can easily be confused by players with the other flashes of pink. Out of the corner of your eye, was that a pink penalty flag dropped or another player running by or a dropped quarterback towel? I guess it can be confusing to players but then I find the whole game confusing.

Pink penalty flags are a small portion of the NFL's efforts.

The  big picture effort is called a Crucial Catch and is a partnership between the American Cancer Society and the NFL and supported by corporate sponsors. This has been going on since 2009. It is not very altruistic of the NFL as they are trying to recruit more female fans, particularly younger ones.

But here are the real details behind this all. How much do you think the NFL must have donated in the past four years? Guess a number and read below:

"This is where the campaign gets murky. While all proceeds from auctioned game-worn items go to breast cancer causes, the league declines to say what portion of the apparel sales do. Inquiring minds can estimate, however. Ticketmaster limited its 2012 A Crucial Catch contribution to 10 cents for every ticket sold last October (up to $40,000 total), and The New York Times reported that Old Navy donated only five percent of revenues to a foundation via a similar 2011 campaign featuring the Dallas Cowboys. Charlotte Jones Anderson, the daughter of Cowboys owner Jerry Jones, supervised this campaign, and Anderson in December was appointed chairwoman of a new NFL foundation that will direct league community efforts.

The bottom line: The league hardly donates much to "fight" breast cancer. You'd need to use scientific notation with negative exponents to express what percentage of the NFL's annual revenues it contributes via A Crucial Catch. The campaign raised a combined $4.5 million during its first four years (2009-2012), including $1.5 million last year. League-wide revenues approached $8 billion in 2009, when NFL teams earned a median profit of $28.6 million, according to The Economics of the National Football League, a 2012 book edited by Kevin G. Quinn. (The NFL says it plans to donate $23 million to all community causes this year -- less than one percent of its likely revenues.)

If they are not really concerned with aiding breast cancer causes, then, why do the NFL and its corporate partners orchestrate this campaign? The cynical answer is that they are more interested in their images, and in growing their products and revenues. They are seeking to attract new consumers, usually female, and to establish a positive connection with them."

A whopping $4.5 million dollars from four years of effort out of $8 billion in revenues in a single year? Thats a teeny tiny percent.

I am not blasting the NFL here but using them as an example of how the numbers of pinkification never add up. If you really care, send your dollars to a worthy cause that you have checked out first.

The number is: 0.01406% each year. Basically a drop in the bucket.

Forcing the decision of putting a value on a patients life

Pharmaceutical companies are forcing the decision of what is the value of a patient's life by putting the huge prices on new medications. There is a new cystic fibrosis drug out, ivacaftor, from Vertex Pharmaceuticals. It costs a paltry $294,000 per year. Doctors are even pushing back to the company about the high cost.

If you are one of the patients with CF who would benefit from this new medication it probably is a life saver. But then you look at the price tag it puts on your life and wonder how you can afford it.

My question to Vertex is how do you justify this cost. I am sure their reply will be somewhere along the lines of:

• Research is very expensive
• No patient ever pays the full price - insurance companies do and low cost programs are available.
• Its worth every penny

My reply is:

• Research may be expensive but why do the American's only get to pay for it and it is so cheaper overseas.
• These high prices are driving up insurance costs everywhere and if low cost programs are available
• Thank you for putting a price tag on the patient's life.

My suggestions back to Vertex are:

• Look at your research costs and change your formula for recovering those costs. You can expect to bank millions and billions for decades on this drug so spread it out somehow. Maybe you won't get as rich as fast but it would be very helpful.
• Let the insurance companies negotiate a fair price for these drugs so the insurance rates don't get so high and make everyone eligible for the low cost programs
• There is no price on a patient's life. Every patient's life is priceless.
• And what about that overseas pricing? It should be the same as here.

Professionalism expected

No matter why we end up in a medical facility we expect professionalism in return as we bare our bodies and medical secrets to receive care. We expect zipped lips and snicker free countenances.

I know I have been a moron at times when really stressed and at an appointment. I am sure there have been those who struggle for a straight face in front of me. And then I hope they store those moments in the memories of ridiculous patients and not share them....

I also know my doctors talk about me. This I do not mind. I like it when my doctors compare notes on me because my ailments are overlapping and due to some of them, and toss in a few medical allergies and sensitivities, I am not eligible for other treatments and doctors are forced to be creative in my care at times.

However at all times, I expect professionalism. I expect to be treated as a human being with respect as any other human being.

Then I hear these stories. A study done on hospitalists in Chicago showing unprofessional behavior and 2/3s were guilty of it. Did you know that every time a doctor orders a test as urgent when it isn't, that is unprofessional? Everyone needs to wait their turn except when it is truly urgent. This is a note to all who have benefited from jumping line.... If all tests were urgent, none would be.

The unprofessional behaviors fell into four larger categories, which accounted for 76% of survey variance:

• Making fun of others
• Learning environment (for example, texting during conferences or not correcting a patient who mistakes a student for a doctor)
• Workload management (for example, celebrating a blocked admission or coming to work sick)
• Time pressure (for example, backing up a resident's note without being confident about the content of the documentation)

We can say 'hmpf that didn't happen to me'.... 'I am not a hospitalist I don't need to worry'.

But what if it happened to you, they made fun of you? What about this story of this woman who worked at the hospital and went in for surgery. Look what happened to her while she was sedated.

They painted a mustache on her and added  yellow tears down her face. If that was me, I would actually file a lawsuit. Something I have never done before.

Professionalism is one of the most important things we expect from our doctors. Its right up there with a good bedside manner and a knowledge of your ailments.

Do I have to be an adult all the time?

Do you remember as a child when there was a monster in the closet? You could close your eyes very tightly and hide under the blankets and it would go away.

Wouldn't it be nice if it worked as an adult. Sometimes I wish I could just walk away from it all - like a vacation from all my health issues. The problem with health issues is they go on vacation with you. How annoying.

Sometimes I wish i could be a child and climb a tree, hanging up side down. Or run and jump into the pool - the jumping is the hard part. (Also being a chicken about cold water doesn't help.)  Or being double dared to ride your bike down the hill, no hands. Or chasing the boys out of the no boys allowed club (we had one).

But I digress. I need a vacation from ailments too. Not just a tropical beach. But a healthy body on a tropical beach. Or a hike in the mountains where I can go a decent distance, and even carry a pack. Skip that, I'll have a sherpa to carry the heavy stuff but I still want to walk.

As part of having the ailments, they follow you everywhere. They lurk in the background in that little corner of your brain saying 'whats that next test or visit going to show'? Its really hard to turn that part of your brain off. And most of them aren't going away, ever.

So the monster lives in the closet in your brain that you can squish your eyes shut and hide under the covers from it. Damn.

I don't want to be an adult all the time. It takes all the fun out of everything. Maybe I need a second childhood.

An update on me

Its a blog about me so every so often I write about me. So if you are expecting something profound about the state of the world or cancer research, you can stop reading now.

I had a fun summer with lots of vacation time. In fact my job finds amusement in how much time off I have been taking. It has been enjoyable but exhausting. I am now at the point of recovering from fun.

I took a six week doctor appointment hiatus and now am back to the grind. I had four this week. I saw the dermatologist who trimmed a thingy on my face that didn't look suspect but had bled this summer for a while. She burned a wart (icky poo) on my toe which left me with a giant blood blister (triple icky poo) on my toe so I couldn't wear shoes.

I saw my periodontist and my teeth are fine but I need to floss more - now there is a surprise.

I saw my rheumatologist and there is some progression in RA in my feet. She prescribed using metatarsal pads in my shoes (which is hard when you are reduced to sandals because of the triple icky blood blister). She also gave me an NSAID cream for the inflammation in my feet to use twice a day.

Because it is me, guess how had a reaction to lotion on my feet? (Only I would have a reaction to something like that because I am special.) I started using it Tuesday night. Then I started not getting enough sleep. Last night I put it on my feeet and was trying to get to sleep when I realized by heart was racing, my body felt all antsy. On the advice of my husband (sometimes I listen to him to make him think I always listen to him), I took a shower and scrubbed my feet and got back in bed.

I slept for 12 hours after that. My husband says he will remind me of that all day - personally I think he is jealous that I got so much sleep and he probably woke up at 6 like he always does. But I feel much better today and think I will skip that cream until Monday when I can call my doctor.

My blood work had some issues that are under advisement at this time - this means wait and see and take more blood in a couple of months. No tumor markers or anything but other things which could indicate things. This means I am ignoring them until I learn more after the next rounds of test results.

I am also busy getting ready for some craft fairs with my knitting this fall. The cat turns 19 - he may need a birthday party. My husband is one of those many furloughed government workers so we are not spending money on anything. We did want to go to the beach today with our parking pass but I overslept.

My garden is winding down but my dahlias is still blooming. That is not a dahlia in the picture but another flower that was blooming last week.

See it was a blog post about me but I am fine mostly and tomorrow I'll try to be more profound.

I am annoyed about pink already

On day 4 of Pinktober, the month formerly known as October, and I am already annoyed by pinkification. Boston's Museum of Fine Arts was lit up pink last night. The NFL has already made an announcement on their support of pinkification. I get way too many emails and FB posts about pink things.

Damn. I'll go live under a rock for the rest of this month. It is so annoying!

The gap in breast cancer research

There is a growing gap in breast cancer research. Get past all the pink awareness bullshit and look at research that is currently going on. There has been lots of progress in the past four or five years where scientists are beginning to understand the complexities and unpick some reasons on how cancer cells work divide and spread. But they also realize the most important research gap is to find out how cancer progresses.

They identified 10 key gaps that need be plugged:

• better understanding of genetic factors
• pinpointing sustainable lifestyle changes
• targeted breast screening to those who will most benefit
• understanding how breast cancers grow and spread
• understanding how cancer cells with different characteristics form within a tumour
• tests to measure how well patients will respond to chemotherapy or radiotherapy
• improving drug regimens
• developing better imaging techniques
• practical support
• tissue donation and analysis

I completely support a change in direction in research to learn how cancer progresses instead of just focusing on the cause or treatment of it.

As this has been identified now, I hope to see changes in this direction in the future.

Do you want an eulogy or a resume?

This is an interesting concept and I read an article on Huffington Post about it. A friend of mine died a few years back from her asthma. She was single and not close to her family. Her funeral was well attended but one of the few speakers was her boss at her job.

We thought that was weird. He did talk about her at her job and a long lost love. But it was a resume.

I don't want my eulogy to talk about my life in marketing and non profit work. I don't want my eulogy to be about living with my medical history (where they always have to be sure). I do want my eulogy to be about meaningful things I have done - lots of time outdoors, skiing, ice skating, hiking, camping, reading, unable to sing a note, knitting, consignment stores, travel, organic vegetables - and the people who have meant a lot to me - husband, family, and friends.

I think I need to write it myself. Damn. Its a good thing I plan on being here for a long time so I have plenty of time to write it. What about you?

Accountability

Accountability means the state of being accountable, liable, answerable. Accountable means being able to explain. That is what I am asking for.

The people who brought us pinkness, a/k/a Komen for the Cure, claim they are out for the cure of breast cancer. They spend 18% of what they take in on research. That's it. The rest is on pinkness.

Twenty two years ago they started handing out pink ribbons to help find the cure for breast cancer. In that time they have painted the world pink, and introduced us to pinkwashing and pinkification. There is no cure, treatments are still horrible. Mortality rates are unchanged. And they have sued other organizations for using the words 'for the cure'.

A little accountability is needed here to explain what they are really doing. They are not for the cure. They are selling pink.

On this October 1, as the landscape slowly turns pink, make an accountable decision with your donations. Do not paint the world pink, make sure your money is going to something other than just pink paint.