Keep your information to yourself

Every time you sign up for another store's shopping program, where you are enticed by the discounts and special offers, you are actually giving away your information. I don't consider it as much of a problem at a clothing store or the grocery, but when its the pharmacy, that becomes another story.

CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.

"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.

At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."

The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.

Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.

"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."

Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.

The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."

So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.

Spoon Theory (Or How Many Spoons Is That Worth To Me?)

Do you know about the spoon theory? No, its not something you learned in high school physics and since forgot. Its about life with a chronic illness. Christine Miserandino over at "But You Don't Look Sick".

This has come up in a couple other blogs recently and someone emailed me about it earlier this week. You can read the entire theory here but to summarize (poorly):

If you are healthy, you have an unlimited supply for spoons to get you through the day. As you start your day each task costs one spoon. This includes taking a shower, getting dressed, making breakfast, standing in line at the coffee shop, taking the stairs instead of the elevator up to your office, working straight out all morning, going to lunch, etc.  Each task is a spoon.

But if you have a chronic illness you start your day with a set supply of spoons. Probably about 12. If you do too much you will run out of spoons very early in the day. If you use up too many spoons, you might have fewer spoons the next day. Or if you run out of spoons, you need to spend the rest of the day resting/recovering.

This is my life now. Every day I need to evaluate what I am going to do for the day and figure out how to  use my spoons. I look at as 'how many spoons is that worth to me'. I have the list of what I want to do and what I need to do and evaluate my spoon count.

I had a very stressful, terrible day yesterday (thanks to bankers) and I didn't sleep well so my spoon count is bit low. I want to go to the gym, make four pies, and clean up for my brother's arrival with his four kids late this evening. I will be napping by 3pm.

I will rest for a bit longer this morning and attempt to go to the gym. Once I come home, I can make a pie and take a nap while it bakes. And repeat as needed.

Tomorrow is Thanksgiving which means lots of stuff to do, stretching out of spoons, and splitting what I want vs what I must do. I need to get as much rest as I can today. Each choice will require me to evaluate how many spoons each is worth to me.

The accountants rule

I have nothing wrong with accountants. They pay attention to the little details in numbers that I some how don't understand. I have an accountant I use to do my taxes and take care of my financial stuff. My husband has an MBA and he can explain all the financial stuff on a level that I need to understand.

I used to work for a company where each year when I had to present my budgets to accountants, they drew straws on who would have to deal with me. Because I wasn't enough of a numbers person for them. I know they are important. But they also can be too focused on numbers and not on people.

Now we have a problem. Big pharma companies are beginning to focus on their profits and not on creating better medications for patients. Why? Because now that the accountants are beginning to rule.

In the last few decades it has not been unusual for pharma companies, and others, to merge, move, and streamline themselves for financial reasons. Have a competitor? Buy him out, problem solved. Some one designed a good product? Buy them out and take advantage of their technology.

But now big pharma companies are taking it a step farther. They are letting their accountants take over and make BIG financial decisions to take better care of their bottom line. First they are moving to countries with lower tax rates. Then they will lose a lot of staff and potentially stifle innovation as they hire new scientists who start over in development, but they will save a lot of money over all. And example of this is Pfizer which is buying Allergan.

"Pfizer is the largest drug maker in the United States, but after striking a deal on Monday to buy Allergan, the company is on the verge of becoming Irish.

For shareholders, this may be their lucky charm. After the merger, Pfizer will be able to shift its legal headquarters from New York to Dublin and pay lower taxes, which should bolster its bottom line. 

But in the process, scientists are likely to lose their jobs, innovation may suffer, and consumers could pay more for Pfizer medicines."

To me this deal sounds like only the accountants and share holders will be happy. So I must ask: What about the patients?

Maybe its time for the politicians to step forward and say the US will negotiate with pharmaceutical companies for their medications, only if they are based in the US, paying US taxes, and hiring American citizens to work there? Just an idea.

How Generous!

Back in September, I blogged about the lovely 'gentleman' who bumped up the price of a drug from $3.50 per pill to $750 because they felt like it essentially. Because of a bit of ensuing 'bad press', they then announced they would reduce the price but never said how much.

Now they have finally made a decision on their price decrease. It will be a generous 50%. So since they raised the price somewhere around 5000%, the 50% decrease will really be about 2500% increase from the original price.

"Still, even a 50% discount would only bring the price for hospitals down to $375 per 25 mg pill.
The typical Daraprim dosage is between 50 mg and 75 mg a day for one to three weeks and can be followed by an additional 25 mg a day for four to five weeks if needed, according to the FDA. So even with the discount, a normal course of treatment for toxoplasmosis could cost between $5,200 and $36,700."

I still don't like this guy and don't think he's generous.

Aggravations

My little world is feeling very aggravated this morning. First of all my damn laptop is having way too many technical issues. I have been working on it for days. It keeps running too slow. It is running a little faster but still has hiccups. I need to pull some more tricks out of my sleeve to fix it.

Also, my damn prescriptions are aggravating me. A few weeks ago, I had prescription issues when it took weeks to get one filled. Last Tuesday I called in another prescription and today I had to call again... I have 1, yes ONE, pill left. Which means I have until tomorrow at about 6 pm before I completely run out. Just damn aggravating.

Then I read in this morning's paper (yes I read the paper newspaper every day - the comics are better in the paper than online, and if you don't read the comics, life would be too boring) about how many unvaccinated children there are these days.

Who knew that most children do not get their vaccinations before their second birthday? Vaccinations are one of the greatest advances in modern medicine and people don't get their kids vaccinated. I don't get this. People who stop eating fast food to be healthier but then don't get their kids vaccinated? They would have their children's best interest at heart if they got the shots.

I just don't understand this. Its the same for people who go macrobiotic and skip going to the doctor. Maybe I'm just good and aggravated already before I read the paper

Inaccurate Medical Tests

With new medical research, medical 'tests' are springing up all over to test for genetic defects in unborn babies, best treatments for medical conditions, and risks of certain diseases, among other issues. The problem is not all these tests are accurate and are leading to unnecessary surgeries, putting patients on unneeded medications, and raising medical costs.

The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.

"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.

Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.

But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."

The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:

One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”

According to the American Cancer Society:

"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."

There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.

My doctors have never mentioned either of these two tests for me. I do not  think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.

Can I be a person not a patient?

I often feel I spend a good portion of my life going from medical appointment to medical appointment. My calendar is full of doctor appointments, reminders to call different doctors, or notes on prescriptions.

My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.

I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.

Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.

Comparing notes

Yesterday I had lunch with a high school friend who has MS. She is the one person I know who can relate to many of my health issues. While she hasn't had cancer, she has had chemotherapy - it is used for MS as well as other ailments besides cancer. Its safe to say we can compare a lot of notes.

As we graduated from junior high and high school together, we both are 37 and holding. And our respective healths (I am not sure healths is a word but I'm using it) are in the toilet. We discussed exercise options - she is an avid hand cycler - and I go to the gym.

We also talked pain management and siblings. Pain management is big for both of us. Pain management while functioning like a normal human being is even more important. There is a fine line between the two. And siblings? Need I say more. We got to argue about who got the better handicapped parking space. I got there first and left her a closer van accessible space... that someone else took before she arrived.

I have many cancer friends these days but I don't know as many people with other chronic conditions. And my friends with rheumatoid don't seem to have anywhere as many symptoms as I do.

He's walking the walk, not just talking the talk

Here's an example of someone who is really walking the walk. A former NHL (Non Hodgkin Lymphoma) patient, Robert Bazemore, is now the CEO of Epizyme which is developing a drug targetting NHL (which is not just a hockey league for some with cancer).

This is huge to me.  I greatly hope that this means the company will focus on the patients and not just on the bottom line.  The article mentions that he did not mention his medical history when interviewing for the board but did reveal it after learning about the focus of the company.

As a cancer person it is very difficult not to let a disease define you and what you do. Often we keep it hidden from co-workers because we do not want to be labeled or thought of as being sick. This can be a huge detriment to one's career path. If others think we aren't physically up to a job or we might n need too much time off and would be a burden to the company and therefore would not get a job offer.

But now that we have a CEO, openly a cancer person, running a company which is developing a drug that might help him and others with his same cancer. I am a huge fan.

I wish more people could do this and society would not shame people for medical issues.

Perceptions of cancer

After living with cancer for so long, I think I have a slightly different perception of cancer than many others.

On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of  'if you have your health, you  have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.

My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.

When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.

I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.

I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?

So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and  consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.

It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.

And we need to remember that.

Please, patients not profits

I know I can sound like a broken record sometimes (a very badly scratched record) but this stuff just really irks me. A new report came out recently that said Gilead, manufacturers of that ultra expensive Hepatitis C drug,

"The 18-month Senate committee investigation reviewed more than 20,000 pages of company documents.

Of course it takes a Senate committee...

'The documents show it was always Gilead’s plan to max out revenue, and that accessibility and affordability were pretty much an afterthought,' said Senator Ron Wyden, Democrat from Oregon, who co-led the investigation with Senator Charles Grassley, an Iowa Republican, in a press conference.

Its all about the revenue. Their pricing strategy also caused patients in several areas of the country to be limited in their access to the potentially life saving medication because of the cost alone.

In a statement released Tuesday, Gilead disagreed with the conclusions of the report, saying that the price was ‘‘in line with previous standards of care.’’ The company noted that it has programs in place to help uninsured patients and those who need financial assistance to access the treatments. More than 600,000 patients around the world had been treated with Gilead’s hepatitis C drugs since 2013, according to the company." 

Of course they were not happy about criticism. And yes they have programs to help uninsured patients and ones in financial need. But maybe they wouldn't need such expansive programs if they hadn't priced it so high in the first place.

"The report suggests that the factors Gilead used to set its price were not based on the research and development needed to bring the drug to market, or on the $11.2 billion it paid for Pharmasset, the company that developed Sovaldi. Instead, Gilead executives looked at what previous treatments had cost and the effect of future waves of competition on the revenue it could bring in.

Instead of using their industry's standard line of the R&D to bring it to market, they decided to get as much money as they could and then set themselves up for future high priced medications.

‘‘Company officials surmised that its drug had a ‘value premium’ because of increased efficacy and tolerability, shorter treatment duration, and its potential to ultimately be part of an all-oral regimen,’’ the report states.

In its statement Tuesday the company said, ‘‘We stand behind the pricing of our therapies because of the benefit they bring to patients and the significant value they represent to payers, providers, and our entire health care system by reducing the long-term costs associated with managing chronic [hepatitis C virus].’’"
Admit nothing, deny everything. And screw the patients.

Some books still hit too close to home

I have always been a bookworm (hiding under the blankets with a flashlight as a child). I read lots of different types of books. After my first cancer diagnosis I found I would have problems with books on young women with life changing medical issues. I would stop reading them, get upset, and put them down. Some I never finished reading.

I have thought I have had this under control from time to time through the years but then again my angst rears its lowly head. I got a pile of books out of the library last week and was looking forward to reading them. I got through one and put it down to move on to the next.

Red alert! I didn't catch the full plot when I read through the blurb in the library. A woman has to figure out how to tell her best friends that she is dying of breast cancer.

I resisted the urge to immaturely throw it across the room and put it down. It sounded like a great book except for that tiny little detail on an impending death from cancer.

I have pet peeves about book reading. For some reason I don't really like books written in the first person but sometimes I will read one. I'm not sure why the first person bugs me but it does.

I don't mind books with highs and lows, emotional tension, or twisting plots. I sometimes wonder what is the real difference between a romance novel and a military novel. Sometimes I think that its just the amounts of lovey dovey mixed in with car chases, shoot outs, or high drama and a few dead bodies.

But its the causes of death which get me. Bullets, poison, large animals don't bother me. But cancer gets me every time.

It would be nice if it would someday I could get a handle on that.

Big hospitals forget who is important - the patient

A while back I read an article about how surgeons at Mass General were double booked for surgery and the hospital policy was okay with this. Double booking is when the surgeon is responsible for two surgeries going on at the same time. A follow up was published yesterday to show the results of this expose and whistle blowing by Dr. Dennis Burke.

"Burke was at the center of the Globe Spotlight Team’s report in October about the propriety and safety of a fairly common practice called concurrent surgery, or double-booking, in which doctors work on more than one patient at a time."
And as long as the doctor is within 1/4 mile of the hospital during both surgeries this is okay. And that's the new policy instituted by MGH as a result of the story. Really? I don't consider this that okay at all. I would not want the patient where the surgeon wasn't even in the room. I assume the surgeon is responsible for the surgery should be in the room at all time.

Burke is uncompromising on the issue. He called it unsafe and unethical, embracing a cautious approach that I think most of us expect from the doctor wielding the scalpel.The hospital's response to this article was appalling. They fired the man who spoke up about this issue. He was a physician at the hospital and ended up moving on to a new hospital, and all his patients followed him.

The hospital disagreed. MGH said it has taken careful steps to assure patient safety. The hospital accused Burke of violating hospital rules and perhaps federal privacy laws by supplying the Globe with copies of some internal records.
Being a whistle blower is a hard thing to do. And by being fired by the hospital, he has become a hero to others. 

"Burke thinks MGH and its advisers blundered by terminating him. “Probably the stupidest thing they did was to fire me,’’ he said. “If they didn’t, this wouldn’t be such a big story.’’

But it is. And that may explain why nearly 300 people turned out at the Fairmont Copley Plaza on Friday afternoon during a risk management seminar sponsored by Harvard Medical School to hear Burke’s version of events and why he believes concurrent surgery is unacceptable.

When he was done, the audience stood as one amid resounding applause." 

Who do you want for your surgeon? One that is up to 1/4 mile away while you are in the OR or the one who said this was wrong? The patient is the most important person here and their safety should be utmost.

How RA (and other ailments) change your feet

In addition to the pain and fatigue that came into my life with my degenerating disks in my back, RA, and fibromyalgia, my foot wear has taken a big hit.

I have never been a fan of high heels, well not since my 20's and 30's when I was going out dancing regularly. My favorite work shoes were low to  moderate heels for years. I had no real problems with my feet.

Since my RA diagnosis, my feet are a big part of my conversations with my rheumatologist. RA frequently affects the small joints in your hands and feet at first. I can tell you my RA did start that way. I get painful hands and feet. Also, I have to use toe separators on my right foot to stop my toes from curling under each other.

I don't shop for shoes by looks or heel height. My shoe choices are no longer low or medium heels. I get to wear flats. I get to wear supportive flats with a big toe box - meaning no points. I get to put expensive inserts ($50/pair) in my shoes that aren't supportive enough. And my feet are now wider and 1/2 size longer.

Shoe brands that I now look for are Merrell's and Clark's. Naturalizer shoes, a good brand of shoes with structure, no longer are an acceptable choice. While they are supportive they do not provide enough support.

I got rid of most of the shoes in my closet as a result of these changes. Yesterday I found I wasn't alone with this. Lisa wrote about this in her blog as well. (I met Lisa a few years before my RA diagnosis and have been reading her blog for a while now.)

Back to my feet. Foot pain sucks. Because your feet are involved in things like walking and standing. Its hard to do much without using your feet. And sometimes they hurt when I am sitting or lying down.

You never think about some body parts until they stop cooperating with the rest of you. I don't miss my gall bladder much now that I no longer have it. My gall stones made things difficult for a while. I also don't miss my left ovary and uterus since they have been gone for more than ten years.

But my hands and feet are a real problem. They are too important to remove. I am stuck with them as they are and hope they don't get too much worse. And wear ugly supportive shoes.

How confident am I on my health?

This is a tough subject for me. I am at a point where I feel okay most of the time but am not sure I feel well enough to make significant changes. I mean should I look for a new job? At my current job, there are some pluses and some minuses. The negatives are things like commute distance (farther than I like), lowish salary - decent but I wouldn't mind more (who wouldn't?). The pluses are total flexibility in my schedule and I am an established employee.

If I left my job I would have to establish myself somewhere else and have no seniority. If my health acted up and I couldn't work for a week or so (not an unknown event), would I jeopardize it? I am hesitant to look for another job because I am not sure I am healthy enough to establish myself at a new one.

On the other hand, I see my new primary care on Monday and I do NOT expect anything new and unexciting in my health. I don't think I have any bad things going on (but not to jinx myself or anything).

More than one ailment

So I read the news, a lot. And probably I read too much news and especially health news - searching for the elusive cures. But in reading the news, I see lots of different opinions and announcements as one would expect.

Two things caught my eye this morning. One reminds us that breast cancer is not the main killer of women. Its heart disease. While we cover the world in little pink ribbons for breast cancer, we need to remember heart disease and other ailments are out there as well and that also kill people.

Another article I read is about a woman who blogs about life with fibromyalgia. I read the article and then thought for a few minutes (a dangerous proposition I know). Yes she is struggling with fibromyalgia. But there are people out there, like me, that have fibromyalgia and additional ailments. So those struggles with fibromyalgia are piled on top of issues with other ailments or issues.

When we are diagnosed with an ailment, it becomes the hyperfocus of our lives. But we need to realize that we are not the worst off, there are many others who have their own pile of problems, including poverty, mental illness, and more and are in much worse shape.

Imagine life with your pile of ailments and issues and compound it with additional ones such as poverty, lack of health insurance or transportation, isolation, or other issues.

I make myself sometimes peel off my layers of focus on my life and keep the awareness of others who are worse off.

Physical therapy

This morning I finally will start physical therapy for my knee, nearly four weeks after falling. I have opted to have my PT at the gym instead of through the hospital. There are several reasons for this.

First of all, after my initial appointment, I can do my PT on my own instead of having to juggle three more appointments each week. I just don't have the patience for that. When I have PT, I do my exercises every day. Most physical therapists have told me many patients only do their exercises at their sessions.

Second of all, its free. I won't get three sessions each week for free but I will get a session every week or two, and free advice when I want. Yes I have health insurance but I can save the copays, and save my insurance company their share. This makes it a win-win (I hate that term) situation as far as I am concerned.

Last of all, I have had PT for my knees several times so I am aware of what to expect. I know my biggest problem won't be which exercises to do but which ones I am able to do. Between my back issues and hip bursitis, I physically can't do many of the exercises.

So much fun, more than I deserve.

I haven't blogged (Miss...)

Did you miss me? Actually I am around, I am stressed (no new health disasters), I am tired, and I am still without a laptop....

I hope to get my laptop back early this week. I have two doctor appointments on Monday and start PT for my knee. And have a PILE of laundry to get through.

Maybe by the time I am back to regular blogging, they will have discovered a cure for cancer, rheumatoid arthritis, fibromyalgia, and a bunch of other ailments. And world peace.

Over focused?

Maybe I am a bit too focused on health issues and my health specifically. I admit to checking the health section of every news source I look at. And then I read articles about new research showing women need to be more vigilant for breast cancer or some other ailment. Really? Can't we all just go back to our annual physical and let our primary care tell us we are fine?

I am fed up with focusing on my health. I am tired of being vigilant and stressing about one ailment or another, never mind any potential new one. Maybe I need a new hobby, or to be healthy? That's it, I'll be healthy again. As if that will happen.

But maybe I need the mindset of a healthy person. What is the mindset of a healthy person?

Maybe I'll just get another hobby.

Finding the balance

More tests or fewer, more meds or fewer. Does this mean fewer diagnoses and more deaths? I don't think it has to. We just need to find the balance.

We need to focus on finding, not what is the most we can do, to what is the best thing that can be done for the patient. Go read this article to learn more. I strongly agree with this theory.

I can't tell you how many times I have felt over-tested, -poked, and -prodded, because of 'my medical history, they have to be sure'. I can't tell you how annoying that is. Really? Can't they just say that's the best thing for you? Or is that not what they mean?

There is a current leaning in the medical/insurance world to cut down on the amount of tests, scans, and medications for patients. American medical costs are the highest in the world and American patients are blasted by ads and mailings from manufacturers on the newest, most expensive treatments, which are often unnecessary. And patients ask for more scans.

I get it. I have asked doctors why no more scans or tests? And the answer is 'there are no reasons to have any scans, there are no changes'. I can live with that. And I get mailings from Pfizer to go on Xeljanz, which is probably no better than my current drug combinations. And that new drug costs a fortune.

There is a tiny part of my brain that screams 'cure me', give me more tests, find a fancy pill, do something so I can go back to my former healthy self. But the rational part of me knows that isn't a reality. I can dream can't I?

Are any of these people who are so upset about not enough testing and medications patients? If my doctor says this is what's best for you, I'm happy. Its the right balance for me.

As patients we need to accept what our doctors say is enough. And we still need to be vigilant against under treatment, but that's another story.

Technical Difficulties

I hate technical difficulties. One of my main responsibilities at work is IT support for the company. I troubleshoot, set up computers, install software, and more. I also help friends with their computers as well. Therefore I hate it when I have technical difficulties.

Right now my laptop is in ICU at the local computer store. The preliminary diagnosis is that the plug where the power cord from the wall outlet plugs in has died. The laptop didn't recognize the AC adapter so I couldn't charge the battery, and if you moved it a tiny bit (or not at all), it would lose contact with the AC adapter and shut down. Not fun and basically made the computer unusable.

I will know in a couple of days if its an affordable, sensible, repair. The laptop is 3 years old so it doesn't make sense to spend a lot of money on it. And I really do not want buy a new computer right now. Nor is it backed up (which is a cardinal rule in the IT world).

In the meantime, I am using my phone and tablet for technology. Its okay but not great. Yes I can access the internet and my email but the on screen keyboard is a PITA. And all my files are on the laptop so I can't take care of some volunteer work. Nor do I have all computer programs that I use regularly.

But its not health related and it is aggravating. Grrrr.

And how am I doing?

I blogged about my difficult decision. I blogged about our new cats. I haven't blogged about me.

Honestly, I am not doing that great. I have been exhausted for a while. On vacation I would sleep a lot and was feeling caught up on sleep. Since coming home, I have been exhausted. After two nights in our bed, I have slept well but am still exhausted. I woke up a while ago and am still in bed and will probably go back to sleep.

My knee is a clear source of stress. It has a tendency to give way, even while wearing a brace, which is not fun. I start PT next week and will see how it goes. I plan to talk to the physical therapist about my knee giving way before I call my doctor back. Its not making me happy.

I am also feeling emotionally drained. It was a big effort to leave our long planned vacation. My first thought on driving home was to call my therapist and get in to see her. But I am not sure of my schedule this week and I have an appointment in a couple weeks anyway. Maybe I just need to go into emotional hiding for a bit and lick my wounds for a few days.

In some ways its a bit of relief that I stood my ground and left. Everything is now out in the open.

I need a nap. Bye.

Port healing

Today I went to the Wound Healing Center at Swedish Hospital's Cherry Hill campus. I met a new doctor, Dr Myint and nurse Sally, who are caring, compassionate medical professionals. I know this because in addition to their warm personalities and ability to listen, Dr Myint complimented me on my "dream team" (his words) of other doctors. He knows them all: Dr Klein, my primary care doc; Dr G, my oncologist; and Dr Antezana, my dermatologist. He even knows Dr Flugstad, my orthopedist. I told Dr Myint and Sally they were now in excellent company as part of my team.

Sally removed the dressing that was applied last Friday and cleaned up the site. Both of them examined it and Sally took photos. Sally then measured the wound's depth while Dr M effectively distracted me in conversation. They tell me the wound appears to be healing nicely. Sally applied another dressing and I am scheduled to return for a dressing change again next week.

While they were all in the room with me (including a student nurse), I asked them to take a look at my scalp metastasis. This is the one which appeared to double in size during my first round of Ibrance, which Dr A biopsied and I have kept covered with his antibiotic gook. It got nicely pink in the last two weeks and appeared to be healing, but since the start of Ibrance round two, it's been oozing blood. Dr M of course recommended I talk with Dr G about it. He also opined that perhaps the oral antibiotics I've been taking may have had some positive effect. Sally then prepared a small dressing with medical-grade Manuka honey(!). What they use at the Swedish Wound Healing Center comes from New Zealand and is prepared in sterile environments. Although one can purchase Manuka honey for use in the home, as with any treatment, I believe in the involvement of your physician.

On my way out I stopped at the Ambulatory Infusion Center, where I received treatment for several years at the beginning of this dance with cancer. One of my favorite nurses was there and she did a significant double-take when she saw me. We hugged and decided to have a bigger personal reunion soon. It was so lovely to see her!

I have honey on my head, antibiotics in my system, a chance to reconnect with a friend and a port removal area packed with stuff. All appears well with my world!

Scan results

The results of my scans from earlier this week are a mixed bag. The CT of my chest, abdomen and pelvis shows stable disease throughout. The brain MRI shows some progression and four tiny, new mets. I have only taken Ibrance for one cycle (one month).

Dr G decided it would be best to leave Ibrance and get me back onto a taxane. My cancer seems to respond the best to this type of chemo. I've had four separate experiences with Abraxane! He has prescribed Taxotere (docetaxel), related to Abraxane and also a derivative of the Pacific Northwest yew tree. It has similar side effects as Abraxane but is given once every 21 days.

How will I receive this infusion, you ask, if my port has been removed? On Monday the chemo nurses will insert a PICC line:

A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).

After treatment they can remove the PICC line while my port site heals up and gets ready for a new port-a-cath. If it's not fully healed in three weeks, I can always have a new PICC line started.

Now onto a chemo-free weekend!

Major Taxotere side effects

On Friday the major Taxotere side effects hit me hard. I would have chalked it up to participating in the Gilda's Club fashion show and luncheon, since invariably something goes wrong for me that day, but the discomfort continues all weekend.

I had offered to speak in a short film about Gilda Radner and the impact her life continues to have 25 years after her death. This brought me to the Westin at (for me) they very early hour of 10 AM, dressed to the nines and prepared with memories and a quote from Gilda. The filmmaker asked me a few general questions, I shared my quote at her request, and she seemed pleased with my short interview.

The luncheon featured a photo booth where a (volunteer?) photographer took pictures of people in front of a cororate-sponsored backdrop. I got in line since I had dressed so well and here is the photo he took. (I made a copy with my iPhone.)

Karan Dannenberg, who dressed me for my first Gila's Club fashion show (which I never attended, due to a hospital stay), recognized me, as she always does, immediately said "Nicole Miller," (the dress's designer), and chatted me up for a few minutes. The shawl is courtesy my mother.

Back to Taxotere side effects.

FRIDAY
I went from the Westin straight to my oncologist's office, hobbling on both feet. Dr G and Nurse Jacque looked at me and said "hand-foot syndrome." Now why didn't I recognize that? Dr G told me to go home and start the henna again, since I believed it helped me last time this happened. He also prescribed a short, tapering course of steroids to reduce the swelling in my hands. For the pain in my mouth (mucositis? stomatitis? mouth sores, for the laypeople among us) he wrote a scrip for 25 mcg Fentanyl patches. The patch form delivers a steady dose of pain relief for 72 hours. He also gave me an Rx for more hydrocodone to relieve the break-through pain.

Next I called my naturopath for a recommendation on more ways to treat the mouth sores. Dr Bufi suggested gargling with baking soda mixed in water but not too strong. I should also have asked one of these docs for some Magic Mouthwash, but I could barely walk by then and wasn't about to go to yet a third (compounding) pharmacy.

At home I mixed up some henna, put on my pajamas, and slathered my feet with it. Even the cool sensation helped. Now my feet and hands are bright orange but the henna does seem to help.

My friend H came over and walked the dogs, helped me change the bed linens, and cooked us a lovely Shabbat dinner of Vietnamese spring rolls with fresh vegetables and fried tofu and homemade peanut sauce. After dinner she taught me how to get started on the iPad a friend gave me. We spent a lovely evening together and I was in bed by 10 PM.


SATURDAY
I woke up at the crack of dawn to feed the dogs. At least they bear with my stiff movements and are happy to go back to sleep with me after they eat. They're also willing to poop outdoors and saved me the discomfort of trying to walk them.

I started the steroids as instructed before breakfast and stayed in my jammies most of the day but at some point I couldn't stand myself. I took a shower and actually dressed and sat outside in the sunshine. Then I took each dog into the shower for a quick shampoo which they desperately needed. I Skyped with Rik's family to show off my clean, wet doggies, spoke with my mother and felt much improved by this point. However, I am still popping hydrocodone every 3-4 hours for breakthrough pain in my mouth and gargling with diluted baking soda every hour. It was hard to get a forkful of food into my mouth at dinnertime.

The rest of the day passed reading a new book by Michel Faber (not quite as good as I'd hoped for),  eating leftover fesenjan with rice for dinner. and watching the second half of The Music Man. Robert Preston! I would have fallen in love with him to if he'd used the "think system" on me instead of Shirley Jones. And little Ronny Howard was only eight when he made this movie. Such talent evident at such a young age!


SUNDAY
I slept off and on (remember, taking steroids?), woke up early again with the dogs, fed 'em and went back to bed. Around 8 AM I got up, ate some yogurt, drank a mocha, and reapplied some henna to my left hand. Still haven't showered or dressed or walked the dogs but I see some of that in my future. Plus lunch out with a friend.

It's time to stop blogging and move on with my day. I do want to get out to see my friend. The sun is shining and I refuse to let cancer side effects make me a prisoner in my own home. But on Monday I'm going to have a serious talk with Dr G about how this is not the way to maintain quality of life.


And that Gilda quote I chose?

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity."

Low fever

It's been a week of low fever, constipation, diarrhea and general feeling poorly. I did too much on Tuesday after chemo Monday, which didn't help at all. I cancelled everything for today and barely had the energy to take Tylenol, eat and shower.

I'm off to the sofa to recline for the rest of the afternoon after spending most of the day in bed.

Coming up for air

This past week I've moved from the sofa to the bed with that same low fever and lack of energy. Even taking the dextroamphetamine three days in a row didn't help much. I'd take it at noon, feel better an hour later, try to run my errand, appointment etc., and still find it tough to put one foot in front of the other. I even gave my car a fender-bender in that terrible  Trader Joe's garage on Capital Hill. Then the uppers would kick in and I'd be awake until 2 AM.

Friday afternoon I wondered if I needed a blood transfusion, so we ran to see The Amazing & Wonderful Nurse Jacque for a blood draw. No transfusion needed, just feeling icky, but thanks to our friend T and the interconnectedness of Facebook, we ate a delicious salmon dinner last night. I even had a glass of rose!

Today I actually woke up feeing well-ish. Due to the uppers, I hadn't fallen asleep until two o'clock in the morning, so I stayed in bed until 11 AM, ate something and took my morning meds, sat outside in my pajamas and a blanket in the sun for an hour, then went back to bed until 3 PM. I wish I'd taken a selfie to post. Imagine me wrapped to my chin in a maroon blanket that's covered with dog hair.

D stopped by unexpectedly to visit and we chatted over tea for an hour. That's given me some extra oomph to make pizza for dinner before the TJ pizza dough died. Rik and I will enjoy pizza with mushrooms for dinner, another glass of rose, and have better expectations for Sunday.

Costco anyone?

Missing my dad

Today is my dad's seventh yahrzeit, the anniversary of his death.

He died a week before turning 80, with his mind intact but his body failing in so many ways. Dad said he wasn't dying but I didn't believe him. He certainly didn't want to live the way he was living, and so he did the only thing he could - he stopped eating. He wouldn't talk about any of it with anyone. Not his wife of so many years, not his daughters, and we think not even his therapists (or at least they never told us).

What did I learn? That it doesn't help to not talk about your personal issues, because we can't help if we don't know what's really going on.

And that no one should die alone and uncomforted in the middle of the night, because they didn't believe in their own mortality.

My Dad and Mom circa 1949.
Photo might have been taken at their engagement party.

No it's not pneumonia

But the closest thing possible. I've just well enough to stay home and not be admitted to the hospital, where of course I could pick up all sorts of bugs no matter how clean everything they keep it.

So I continue to honk, cough, and blow incredible amounts of snot out of my nose. I'm on the second antibiotic, this one especially for pneumonia, and I do feel some better already.

Thank God for A, H, and R, who have been walking the dogs while Rik was away. I am taking two of  them out for lunch now and the third has a tbd date. And thanks to all those who gave me rides, brought food, and came to visit during these past few weeks of chemo recovery and what turned out to be not quite pneumonia. You know who you are and I bow at your feet. And will always, as science fiction author Robert A Heinlein originally taught us, pay it forward.

Onward to lunch - or in my case, brunch. And COFFEE!

Yes it is pneumonia

Nothing more to add except that the antibiotics seem to be working. I've stopped coughing and blowing my nose. I just have very little energy. If I do one medical appointment it takes me a day to recover.

Other than that life is peachy, if you like sitting around in your pajamas all day long recovering from the previous day's strenous three hour activity (including showering, eating and being a passenger In a car).

Snarky, but just a little.

Healing

I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.

On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.

The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.

The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.

I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.

When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.

My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.

I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.

My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.

And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.

More soon on the Komen © blogger summit later.

Komen

Maybe you remember Komen invited me to a breast cancer blogger summit in February. I went to DC in March while experiencing the throes of Taxtotere side effects. Since then I've had one round of Abraxane, which should have been fine but wasn't. I've also had pneumonia for several weeks. So I'm finally getting around to blogging about my Komen experience.

I am changing my mind about Komen.

The summit began with introductions. There were eight or nine bloggers, not all of whom have actually had breast cancer but all have had some contact with it. Two of us with mets, one with triple negative disease, at least one in early stage treatment and one whose mother and father had both had breast cancer. Half white women, half African-American women. Komen marketing staff and several presenters.

Komen would like to "increase support" for

1) those living with metastatic disease

2) those in underserved populations such as poor, people of color, triple neg, etc.

3) involving more young researchers in working on breast cancer

Those are three powerful statements for Komen, especially numbers 1 and 3.

Sadly, no one really knows what number one means. A researcher who presented said that he didn't believe people with mets would benefit from more research into stage IV disease than from research into all kinds of breast cancer. This from a man who treats patients with mets! When pressed, he said that wasn't what he meant. But I heard him say it and I wish I'd recorded him. Komen has work to do in this area. We with mets just want to live our lives, and that means research into our disease. We must press this point. Loudly.

The example of a project in Chicago serving poor women showed a photo of an open sewer in a clinic where mammograms take place. Youd have thought it was a third world country, not the USA. So goal 2 is well in hand.

Goals 1 and 3 match well, if younger docs want to study mets and keep women alive longer. Either way, breast cancer needs more and newer researchers.

Yes, we met Nancy Brinker, now head of Komen global. Had dinner with the new CEO Dr. Judith Salerno. And we participated in the DC Race for the Cure.

Now to the last and least expected point. After the Race we were debriefing. Someone said she wasn't a blogger, hadn't been invited to the whole summit (but was sitting with us now, so someone invited her to join us in this most private part of our talks). She said something like, why are you so concerned about mets? What about poor women, women of color and their needs? To which I answered in some astonishment, I didn't set the agenda, Komen did. And I think it's great for Komen to give women with mets a place at the table. And I don't play mine is bigger than yours.

That was my Komen experience. I don't know who this woman was, and I don't want to name the researcher who seemed to think it was okay to develop new drugs to treat his patients but not me and thousands like me.

But the head of marketing took me out to dinner when in Seattle, and invited Dr G to join us, and included her new staff, the ED of Puget Sound Komen and another mets blogger flown here to appear in a PSA. R listened carefully, took notes, and I think we metsters do now have a place at the very large Komen table if we can sit there with open minds and without grudges. That's the biggest change I've seen in breast cancer in my 16 years from early stage to today.

Almost better

I felt so well today that I actually got out of bed at a reasonable 10 AM, showered, ate and dressed, and sat on the deck reading. I didn't take a nap, although I thought about it. I even went on a walk around the corner with Rik and the dogs. That 's the biggest sign of improvement from pneumonia.

On the cancer front, I am losing two fingernails for the first time in almost 16 years of cancer. There are healthy nails growing underneath, so I am not too worried. I get my strong nails from my mother. (Dad gave me the thin hair and the long legs.)

No more news for now.

A month since last Abraxane

I had my last dose of Abraxane on June 1 and the pneumonia came on some time after that. Let's say it's been three weeks since I started the antibiotics and while I am no longer sneezing and coughing, I'm still easily fatigued. It's easy to sleep for 18 hours and then take a nap as well.

The only remaining chemo issues relate to my nails. I have begun to lose three fingernails, which is new to me. There are new nails growing under the dying ones, but it's hard not to pick at the top layer although I know I shouldn't.

My former port site is still undergoing wound treatment weekly. They tell me it's no worse than last time, which I take to mean that it's healing very slowly. There may be nerve damage as well, which would explain the zinging pain that hits me out of the blue.

I wish I had more energy to put into the garden, but even pick ing some raspberries and our small crop of cherries was demanding.

I hate to complain, but this has been a very long month and I'm actually looking forward to whatever comes next.

Following Holley Kitchen's example. Please share!

Following Holley Kitchen's example. Please share!

The latest treatment idea

I saw Dr G yesterday and we discussed a number of things.

My pneumonia is resolving. Yay! Evidently the pneumonia vaccine I received in 2013 didn't cover this strain, but it's too soon for me to receive another vaccine.

He had my tumor tested for the androgen receptor and the result came back positive. He'll contact Dr Julie Gralow, a local, renowned breast cancer expert, to review the result with her, and if she approves, I'll start bicalutamide (Casodex). Although this drug is usually given to men with prostate cancer, it might be effective for me.

Dr G also had my tumor tested for micro satellite instability. The results showed the tumor is stable, which you would think would be the "right" response. But this means the newest therapies might not work for me and I would not be eligible for such clinical trials. It might be worthwhile to re-test my tumor for ER/PR status. If it's changed to triple negative, which isn't too likely in my opinion, it might change my eligibility for said trials.

If Dr Gralow does not recommend bicalutamide, I will start Taxol in a little over two weeks (or, as Dr G puts it, after Tisha b'Av). I wouldn't say he's exactly superstitious, but it makes a certain kind of sense not to start new chemo during the lead up to a major Jewish fast day.

When cancer organizations get it totally wrong

It's worth reading about how Young Survival Coalition, Stupid Cancer and Fuck Cancer missed the message in their corporate partnership with Spencer.


An Open Letter to Young Survival Coalition

Posted on July 9, 2015 by Beth Caldwell

UPDATE July 10: YSC has taken down the Facebook post about this campaign, but Spencer Gifts is still listed as a sponsor on the YSC website. I haven’t received a response from them to this post yet.

Dear YSC:

I’m an under-40 woman living with metastatic breast cancer. I’m your demographic, the one your programs are designed to help. And you HAVE helped me–I even go to a support group for young metsters organized by a YSC volunteer. Which is why I think I’m the most disappointed in you, even more so than Stupid Cancer or F*ck Cancer, for being involved in this.

 
See what it says at the top of this? That’s right, it says “Boobies make me smile.” And of course it says it twice, because we all have two boobies. I see what you did there! Hahaha, how clever! 

Oh wait, no it’s not. It’s actually horribly offensive.
I don’t have two boobies. I only have one. They cut off the other one because it had an enormous tumor in it. And the most horrible part of that is, I’m STILL going to die of metastatic breast cancer.

There have been plenty of studies done about how the sexualization of breast cancer hurts breast cancer patients. First off, supposedly funny and edgy slogans like “save the tatas” and “boobies make me smile” trivialize a disease that kills 522,000 women and men worldwide every single year. The death toll in the US has been 40,000 per year for decades. How is the thing that kills those women supposed to be funny? How are those of us who will die of this disease supposed to feel about this joke?

Secondly, focusing on our disease originating in our breasts, rather than seeing us as whole people, dehumanizes us. And it makes women feel that if they have a mastectomy, they’re no longer worthwhile, or feminine, or real women. When I lost my breast, it almost broke me emotionally. Almost. This sort of campaign brings me right back to that feeling, and it does the same for many other women who have had their breasts amputated in a desperate attempt to save our lives–because our lives are what matter, not our breasts. 

Campaigns like this do real damage to breast cancer patients. And I know that you know this, because right next to where this image appears on the YSC Facebook page, you’ve got a video about how breast cancer surgery impacts women’s feelings of self-worth. 

I expect this kind of insensitivity from a porn industry executive trying to get some cheap publicity. But not from you, YSC. I expect you not to make women who have had a body part amputated feel worse about themselves. I expect you to know that this type of campaign is absolutely the worst kind of cause marketing. And yet, there is your logo at the bottom of the poster, and there’s this image proudly displayed on your Facebook page.

Speaking of your Facebook page, several of us pointed all of this out to you in comments on that photo there. Let me quote your complete non-apology here:

“We apologize if this post was offensive. We would like to clarify that the “Boobies Make Me Smile” slogan is not a YSC slogan, it is the name of Spencer’s Foundation. Our bracelet is called “Survivor Strength.” We partner with Spencer’s to promote breast health education among their young consumers and over the last 8 years have reached countless young women to empower them to be their own best health advocate. It is always our goal to inform and empower young women with breast cancer, and we’re sincerely sorry if this post was insensitive.”

If?!?! If this post was insensitive? If this post was offensive? It’s your goal to empower young women with breast cancer, while you trivialize their disease and marginalize those of us who have lost a body part to it? Really? And how is the fact that Spencer’s foundation is called “Boobies Make Me Smile” a reason not to be offended? You’re telling me that you actually decided to partner with an organization called “Boobies Make Me Smile?” Are you kidding me? 

I know you need money to support the important programs you run. We all understand that. But you undercut the power of those programs and the support you give to young women with breast cancer when you turn around and partner with an organization whose very name is offensive. How can we take you seriously after this? How can we believe that you really have our backs, when you turn around and throw us under the bus to make a quick buck?

I beg you, before further damage is done, to withdraw from your partnership with Spencer Gifts and give them their dirty money back. If you don’t, I know an awful lot of young women who will no longer be able to support you in good conscience, myself included.

Sincerely,

Beth Caldwell

Also picked up by huffington post.

This is just too perky for me

My gag reflex is kicking in. This woman has metastatic breast cancer and is successfully being treated by Ibrance according to her perky oncologist. It isn't news, it feels like an Ibrance commercial.

 

I have the urge to barf. I'm sorry but its true. And yes its that really expensive new treatment.

And my inner marketing person says this kind of news article is really a type of advertising. I am not saying that anyone in the video did anything wrong. But marketing comes in all forms. And Pfizer is making big bucks on Ibrance.

You can read that article here. Okay, my inner witchy cynic is showing this morning. Maybe I need a nap or something.

Happy Independence Day

Raspberry curd filling made with our own berries, local blueberries and white nectarines.

Update from Dr G

Rik and I saw Dr G last week. He wants to retest my lungs with another CT to make sure my pneumonia has ended. Also I think he wants to me take a blood test for pneumonia markers. We even talked about the possibility of the pneumonia vaccine to prevent another month like this.

As far as treatment goes, we have several options --

• Pembrolizumab trial (If I qualify. Usually they want someone with fewer pre-treatments and bone-only mets.)
• Testing my tumor for micro satellite instability (this is the very newest treatment)
• Choice of chemo: Taxol (paclitaxel, which I had one time, a few years ago), Ixempra (ixabepilone), or Cytoxan (cyclophosphamide, which I had during my original early stage cancer 16 years ago)

He wants to incorporate neuroprotective medicines. I'm not sure which meds he means, but the idea is to prevent further neuropathy in my feet and hands.

Mouth pain

I've posted before about ONJ (osteonecrosis of the jaw), a rotten side effect of taking too many bisphosphonates to strengthen my bones over the years, or in my case, too much Xgeva.

For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).

I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.

I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!

My AHA moment

A week or so ago, I did a live interview for Mutual of Omaha. They run public service-type announcements on television featuring regular people talking about their "AHA Moment."

MofO seems to want their interviewees to articulate something amazing, challenging, or out of the ordinary that somehow affected our lives in a big way. The employees travel around the USA seeking speakers and also interviewing passers-by. There is one person to interview both random folks and those who are prepared; one person to run the camera; one person as a greeter; and the driver of the van.

I wrote earlier that Gilda's Club Seattle had invited their members to speak, and I said yes. It's a good thing too, because the other person who agreed woke up feeling unwell and Anna Gottlieb, the founder and executive director of GCS, rushed over to the Seattle Center to tell her AHA Moment about deciding to start a Gilda's Club here.

You can view my story here and Anna's here. Remember to turn up the volume!

If you like my little video (I got on my personal hobbyhorse about the government's lack of funding for advanced cancers), please feel free to share it with others.

To paraphrase from Anna, you too can pursue a dream against all odds, and make your dream come true.

The 'joys' and solitude of a second cancer

When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.

Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.

When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.

However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.

With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.

This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:

"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.

Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."

So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.

That awareness thing

Am I the only one on the planet who thinks we do not need more awareness of different cancer types? I mean yes there are some really obscure ones that need awareness and more treatment as well as metastatic cancer definitely needs more options. But really, do we really need an unending calendar of fashion shows, races, walks, and other events?

I may be cynical but I think most of us are too aware of cancer these days. Or is it just me because it has been part of my life for so long?

A great article

From Medscape.com:

Cancer Patients Start Protest Group Like ACT UP

Nick Mulcahy

July 15, 2015

The pink culture of breast cancer is about to get an infusion of red hot.

A small but growing group of women with metastatic breast cancer and their supporters have formed MET UP, an activist group modelled on the confrontational AIDS Coalition to Unleash Power (ACT UP) and sharing the same inspiration of anger, rebellion, and fellowship/sisterhood.

"MET UP is…committed to direct action for a viable cure for breast cancer. We protest and demonstrate," reads a portion of the group's mission statement, which was recently posted online.

A changing of the guard — and of attitude and tone — is needed in advocacy, suggests the group. "The time for honey is over. Break out the vinegar. It's our turn now," the group states.

MET UP has its eye on some major powers-that-be: the federal government, Komen for the Cure, and sexploitative breast-related charities, said founding member Beth Caldwell, 38, of Seattle, Washington, a married mother of two small children whose initial breast cancer diagnosis was metastatic disease.

"We're very much in our infancy, but we have big plans," she told Medscape Medical News.

One of the roots of the rebellion is frustration over the fact that, despite 40 years of "breast cancer awareness," the average survival with metastatic breast cancer has not changed and remains 3 years. "We're not making any progress in keeping people alive," said Caldwell.

"There are many members of our group who are very angry at Komen," she continued, referring to the influential and controversial breast cancer organization.

Here's one of the reasons for the rage, said Caldwell: In 2013, Komen had $125 million in revenue but gave away only $38 million in grants (and even then, some grants were not for scientific research). "As an organization that pitches itself as 'for the cure,' they are not doing enough to actually seek the cure," she summarized.

Komen has also reportedly kept women with metastatic disease off the podiums of its rallies because the specter of death is an emotional downer, as highlighted by Medscape Medical News.

"We are excluded from the club," says Caldwell about the general aversion that pink culture — with its mantra of "beating" breast cancer — has for the people who are inexorably destined to die of the disease.

So, is MET UP — à la ACT UP — planning to storm Komen headquarters in Dallas? Not now, said Caldwell, but "Komen is definitely on our radar." The activists recognize the group has new leadership and they are waiting to see whether grant funding priorities change.

The first major direct action planned by the fledging organization is a nonviolent "die-in" on October 13, which is Metastatic Breast Cancer Awareness Day, in Washington, DC, on the lawn of the US Capitol with 1430 men and women to symbolize the daily death toll of the disease worldwide.