Wednesday, September 30, 2015

The big reveal

I have worked at my  job for almost 6.5 years and am leaving in five weeks. Well I will work remotely one day a week and come in once a month until my replacement is found. Which I assume will take until spring.

I have made friends at work as I have been there so long. They make fun of  my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.

But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).

In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.

So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?

Tuesday, September 29, 2015

Keeping secrets

Everyone keeps secrets - like how much I weigh. That is known to me, the scale, and my doctor's office. Its no one's business but mine and, truth be told, I really do not like the number but that's another story. There are other instances where keeping secrets is okay. Like a secret family recipe. Or a medical history.

These secrets are just information we want to keep private for whatever reason. It is fine that they are kept private and not shared indiscriminately.

Then there is the issue of secrets vs. transparency. This is when secrets are kept between groups where they should not be. Transparency is important between groups so that honesty leads and there can be understanding and appreciation of the other side. Without transparency, dishonesty can be suspected and with suspicion comes distrust. Which leads to bias and anger.

A big area where there is no transparency is in drug pricing. The pharmaceutical industry has a problem with this. Yesterday (was it yesterday or the day before?) I blogged about that 'gentleman' who jacked up the pricing of an existing drug for no given reason.

And for an industry already struggling with an image problem over the rising costs of prescription drugs, companies are going to have a hard time distancing themselves from one of the most controversial men in America.

The reason is a lack of transparency. Drug makers do not really want to explain how medicines are priced and, as a result, they have adopted an air of secrecy in which one cowboy can create havoc for an entire industry.

“The [Shkreli] episode is really an extreme manifestation of an attitude that has taken over the industry,” said Bernard Munos, a former corporate strategy adviser at Eli Lilly who is now a senior fellow at FasterCures, a medical research think tank. Most drug companies “are not raising prices by 5,000 percent, but large prices will leave patients with the same impression.”

It’s certainly true that funding drug discovery is expensive. The latest estimate of what it costs to get a drug out the door is, on average, $2.6 billion, according to a 2014 Tufts University report that was funded in part by industry.

Yet pharma leaders have done a poor job of explaining how the cost of R&D translates into a need for climbing prices or the sky-high sticker prices that are commonly set for new medicines from the get-go. Rather than opening their books, drug makers continually repeat the refrain about increasing development costs, and they avoid any candid discussions about cost that may invite more interest in setting price controls.

This is not a good thing. We need transparency to prevent more 'greed based' actions. Honesty and its partner transparency should rule. Secrecy and suspicion should be

Monday, September 28, 2015

There is no good cancer

I cannot tell you how annoying I find this. To many people state that thyroid cancer is a good cancer. It is not good, its cancer.

A woman in Alaska who has had three cancer diagnoses stated:

""Thyroid cancer takes a long time to grow, so it's a great cancer to have," Zaverl said."

Okay, what is so good about it? After treatment, the patient is left without a thyroid which requires medication and monitoring for the rest of their life. That is not so great.

I do not understand that people who think thyroid cancer or any cancer is a good cancer.

Read more here:

Sunday, September 27, 2015

Okay, I just don't like or respect the guy

A few days ago I wrote about the drug whose cost was going from something reasonable $3.50 per pill to $750 because the new company owner wanted to. Due to pressure, they have now said they will reduce the price but didn't say when or by how much.

This same person has a history of filing frivolous lawsuits to interfere with FDA approvals and also hedging against the company stock. So he ends up making a bundle while slowing down drugs reaching the market. So this lovely gentleman has a history of doing this:

"Until this week, Shkreli was largely unknown beyond Wall Street and the pharmaceutical industry.He gained sudden notoriety for jacking up the price of Daraprim, a drug used to treat life-threatening infections, just two months after his company, Turing Pharmaceuticals, acquired the medicine.
Initially defiant in the face of an onslaught of criticism, the 32-year-old chief executive agreed on Tuesday to lower the price, although he has not indicated when or by how much."

But wait there's more!

"Shkreli employed a similar pricing strategy at Retrophin, another drug company he ran before its board of directors booted him from his executive position. Last month, Retrophin accused him in a lawsuit of using company funds to repay investors after his hedge fund became insolvent."

Isn't this illegal?

"Shkreli also has a track record of betting against pharmaceutical stocks — a practice known as short selling. And in at least two cases he pressed federal regulators to reject the companies’ product at the same time he was betting the stocks would go down."

I think I have a nasty name for him now.

"In 2010, while running his hedge fund, Shkreli wrote a letter to the FDA urging the agency to turn down an application from MannKind, a company he was shorting that was seeking approval for an inhaled insulin product, according to news accounts. The agency initially had multiple issues with the drug but eventually approved it last year."

And again:

"In 2011, Shkreli then turned his attention to Navidea and its cancer diagnostic, called Lymphoseek — this time going so far as to a file a “citizen’s petition,” a more formal kind of regulatory complaint. Shkreli has no formal medical or scientific training. But while shorting the firm’s stock, he argued there were problems with the design of clinical trials used to evaluate the radioactive agent.

He publicized his complaints and financial bets against Navidea, which caused the company’s stock value to drop by nearly half, to about $250 million, leaving the drug maker in turmoil.

By filing the petition, Shkreli “almost derailed the Lymphoseek program,” said Steve Brozak, who heads WBB Securities, which helped raise money for Navidea (which was known as Neoprobe at the time). “He created an illusion there was an issue [with the trials], but the only thing he did was make money by shorting the stock. Meanwhile, patients could have been penalized.”"

What a 'nice' guy. He is lining his pockets with complete disregard for the patients who might actually benefit from these medical developments. He is young (32), but I am not sure he will ever grow out of this, unless he ends up in jail.

It is people like this who contribute to the expenses of pharma companies who are trying to bring new life saving treatments to market.

Saturday, September 26, 2015

Brilliance at work

In recent years there has been a huge controversy about Santa Monica CA high school being full of PCBs. The result has been multiple teachers and staff have been diagnosed with thyroid cancer. Remediation has taken place in the worst areas.

Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.

I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.

But brilliant idiots at work here.

Friday, September 25, 2015

What would you do?

This morning I was reading Kaylin's blog over at Cancer is Hilarious. She has had all sorts of cancers before the age 30 (4 diagnoses I believe) and now is faced with a recurrence that looks like will do her in sooner as opposed to later. She has a dilemma. She wrote:

"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"

My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?

Personally I find  the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.

Thursday, September 24, 2015

We have nothing to fear but fear itself

I have learned a bit more about Jackie Collins and keeping her breast cancer quiet. It turns out she could feel a lump two years before she went to a doctor. She told People magazine shortly before she died that she was scared to tell her doctor because of her family medical history.

I think this is the old face of cancer. Cancer is not what will necessarily kill us these days. Cancer is becoming a chronic instead of a terminal disease. And many cases when diagnosed early cancer is not terminal.

The worst thing we can do is not tell our doctors about our health issues. If we hide from them, ignore them, or pretend they aren't there (guilty of all of these) for too long, the results will not be the most optimal.

And if we do try to pretend they aren't there, of course they will get worse and not better, unless its all in your head anyway. (Yes I am guilty of that as well.)

Wednesday, September 23, 2015

My doctor appointment yesterday

Yesterday I saw my knee surgeon. He operated on my right knee, formerly known as my bad knee, 15 years ago. He and his physicians assistant are very nice and have a good sense of humor, which is the most important skill any medical professional should have. I admired his tie - a Jerry Garcia. His PA cracked jokes and made fun of my use of my bad knee to climb up on the table. She told me I was supposed to lead with the good knee.

They both poked and prodded my knee. Physical therapy has helped but not enough and it has been giving way on me.

I did ask which knee was my good knee now. The doctor said the left knee was catching up to the right one (which has two meniscal tears and a partially torn ACL). He thinks there might be a meniscal tear in the left one now to go with the osteoarthritis in both. And he thinks I am too young to need a knee replacement yet.

Before leaving the doctor said does it hurt when I push here on the back of my knee? As I levitated off the table in pain, he decided it was time for an MRI and to come back and see him after.

The last thing I need in the middle of moving is knee surgery.

Tuesday, September 22, 2015

Price gouging

That's the only term for when drug companies hike prices 5000 percent. One drug went from $13.50 to $750 (no I am not missing a decinal point). Thats a big price increase. I could not believe it when I read the article.

"Although some price increases have been caused by shortages, others have resulted from a business strategy of buying old neglected drugs and turning them into high-priced “specialty drugs.”"

And its not just one drug, its several. So what happened to the old justification of the research and development costs are so high? There were no new development costs. Probably just marketing crap, once again.

Monday, September 21, 2015

Keeping silent on health issues

I find it very sad when people feel forced to keep their illnesses private. As you may have heard, Jackie Collins, the author, died this weekend of breast cancer. Apparently she was diagnosed six and one half years ago with stage IV breast cancer and only told her daughters.

Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?

But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.

A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.

Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.

Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.

Sunday, September 20, 2015

More on change

As part of moving, we are looking at a variety of locations. The biggest requirement is that my husband's commute stays reasonable. Well the first requirement is that we buy a more affordable house. But my husband's commute is the other significant factor.

Originally, I said we need to stay near the hospital where I am treated, relatively easy commute for me to work, stay near the gym I go to (because it is wonderful) and stay near my family members who live locally. Then we realized that as we downsize, my working will become a lesser requirement. And if I don't work, I can take a day each week to spend with family members so that is two things down.

The next issue of being near the wonderful gym I go to for dilapidated people is significant. But I hope if we move too far for it to be easy to get to three times a week, I might be able to find another gym with the right kind of equipment and supplement that with a physical therapist.

Finally, the remaining big issue is finding another hospital. I really don't want to but if necessary I would. I have been a mostly happy patient there for almost 35 years. All my medical records are there. But if it became more than a 45 minute drive, that might become an issue since I go there an average of once a week. I think that would become a last resort but could be under consideration. The bonus is that  it is about 10 minutes from my husband's job so that if he has a good commute chances are it would still be accessible for me.

I have considered if we move further out I might make a point of getting registered at a more local hospital so that the bulk of my medical history and allergies are there in case of an emergency visit. But I am not impressed with what would be the new local hospital's emergency room so that might be off the table.

Grr. I just want the damn move to be over so I can get through the all this packing and un packing.

Saturday, September 19, 2015

I am unsure

So I have had the same doctor for pain management, Dr G, for a good six years now because of my back pain and later fibromyalgia. We have had a good relationship and he has helped control my pain. I have always liked him and thought he was doing right by me.

I have a friend, L, who has been also going to him for pain management for her issues, which have included curvature issues with her spine. We have compared notes and treatments in the past and both like him.

I had lunch with L this week for the first time after some extensive back surgery last spring. She told me she will never see Dr. G again. He continued to treat her pain, never referred her to a surgeon or anyone else, or sent her for more scans. As a result, her back surgery was much more extensive than if she had had the surgery five years ago. She is very mad at him.

L got a new primary care last year who referred her to a surgeon for her back pain who told her she should have had surgery years ago. But Dr G is an anesthesiologist so he didn't ever refer her to a surgeon.

Now I do not know what to think. Dr G has always told me there is now surgical cure for my pain and I have believed him. I have also done some research on my own on potential back surgery and found that back surgery is very iffy in most cases so I have continued to agree with him. I know every patient is different but this makes me unsure about the whole situation.

I find this very disappointing and disheartening in that we assume a doctor has our best interests at heart but L clearly had a different experience. Dr G believes in medicine to treat pain as that is what he does as an anesthesiologist. A surgeon always believes that surgery is best because that is what they do. Patients get stuck in the middle. And we want to believe that what our doctors tell us is in our best interest.

I think I need to shift my focus from believing Dr G is always correct to doing some double checking. And I have a plan. I see Dr G this coming Friday as a follow up. But then I see my new primary care in a couple more weeks and I will talk to her about my pain issues, particularly my back. I do not want unnecessary surgery but I do want to do whatever I can to feel better.

We must trust our doctors but sometimes we need to do a little double checking. I don't like that part.

Friday, September 18, 2015

When all else fails

Go to the beach.

Yes that is my plan for the day, or at least the morning. I could be doing a thousand other things, packing, moving stuff, grocery shopping, cleaning up, and many more. I could even have gone to work. But I am opting to go to the beach.

Why you ask? Because I want to and I can. And there is a limit to what I can do on a given day. And its a birthday present to myself. Yes today is my birthday (and I am 37 again if you must know).

Back in my 20s I worked for a company which gave all full time employees a paid floating holiday to take on the birthday. Since then, I have always avoided working on my birthday. And today's weather forecast is for an upper 80s perfect summer day and going to the beach is recommended. So I am taking their advice.

I will contemplate life as I gaze out at the ocean. That is my prescription for  life at its best.

As my health goes down my appreciation for living longer improves and incentivizes me to stop and 'smell the roses' so to speak.

Thursday, September 17, 2015

Big changes

So what do unhealthy people do when they have spare time? They pack up their house and move. Yes we are moving. There are lots of benefits for us in moving. We can cut our monthly expenses in half. I can consider stop working. I can get more rest.

I just have to survive packing and moving.

We have been discussing this for a while. We bought this house when I was healthy and working full time in Boston and commuting by public transportation. As my health has tanked, there is no reason to believe I will ever be going back into Boston daily. If we move 10 miles or so away, we can save big time. 

In the meantime, we are packing, house hunting, packing, preparing our house, packing, and packing. These are all things that healthy bodies are capable of but my not quite so healthy body doesn't like any of it. And my mind never likes change either.

Wednesday, September 16, 2015

What if...

What if we just said f*ck it all and pretended were healthy? We might need to take our meds but what if we just went back to the way we were when we were healthy? I could go skiing, hiking, travel more, be thinner, and, most importantly, be happier.

Last night a friend was going to call me to chat and I fell asleep before she called (just after 8pm). Then of course I was up in the middle of the night thinking more deep thoughts, while feeling all my aches and pains, of course.

So what if all of us with  multiple ailments said 'I'm sick of being sick and am going to be healthy again and do all the things we want.' I would love to go hiking again. I climbed the Grand Canyon once so I'm good there but it might be nice to hike more in the Sierra Nevadas or Rockies where I haven't done much hiking. An adventure trip to Scandinavia sounds like a lot of fun as well. Or just stay up late enough to have a social life? Is this asking too much?

Right now my body would protest but I am tired of listening to it and want to say 'f*ck it all' and run away and join the circus.

All of us unhealthy people have inner healthy (skinny and younger) people trying to get out. I want to let that person out and have fun again.

Tuesday, September 15, 2015

A little too personal for me

Now big pharma has another 'bright idea'. They want to use fitbits in clinical trials to get more details on the impact of the medication and if it is working. However that wouldn't work for me. So it would be another way I would be excluded from potential clinical trials.

I am never eligible for clinical trials now anyway. I have too many ailments to be considered. It would be very difficult to tell the impact of a new medication because I have so many others.

Also, I can't wear fit bits. I cant put anything on my left arm because of lymphedema. This means no watches, no bracelets, and only my wedding ring, when my arm is feeling okay. And a fitbit? Absolutely not. I have problems wearing anything on my right arm because of my tennis elbow/bad wrist/everything else that is going on. No watches, bracelets either (I carry my phone to use instead of a watch).

This article talks about a 'fitbit' that would work as an adhesive patch. I am allergic to so many things these days. Last week's pain patch left a raised area on my chest from the adhesive even though I have been using anti itch lotion to help heal it. I am probably not the only person with multiple  medical issues who would have issues when wearing one of these.

Finally, I think a fitbit is a bit intrusive. Its my body and I am not sure how comfortable I feel with someone monitoring my body from afar. I would want to be the one monitoring the results and then forwarding them to the pharma company.

So a 'bright' idea by someone who is healthy.It might be easier for them, but not necessarily easier for the patients.

Monday, September 14, 2015

Deep thoughts in the middle of the night

Insomnia, partly caused by fibromyalgia which gives me fatigue and insomnia, causes deep thoughts in the middle of the night. Sometimes I actually remember these thoughts to ponder them further.

So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is  nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.

Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might  have less joint pains than before.

Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.

However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.

Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.

Maybe I'll get a good night's sleep tonight.

Sunday, September 13, 2015

Mutation Tracking

(I forgot to blog yesterday. Feel free to blame chemo brain, fibro fog or whatever.)

I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.

This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.

I like this kind of progress. It actually seems that doctors are beginning to use it.

Friday, September 11, 2015

Low risk 'cancers'

So is it cancer or not? Sometimes they can't tell. For example which cases of DCIS will go on to turn into a potentially fatal breast cancer. Or which cases of thyroid lesions will actually grow into thyroid cancer? There is a growing epidemic of new cases of thyroid cancer and the question is which cases that are discovered will actually turn into cancer that could be fatal and which will not.

So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....

So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment?  "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."

I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.

Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.

An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.

I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.

Thursday, September 10, 2015

This is not a study

There is exciting new research out about a new liquid breast cancer biopsy. Wow! Wonderful! Not so fast. The study looked at FOUR people so far. I know they have more patients lined up to include but I do think announcing advancement based on four people is a bit premature.

That's like saying 'I went to the beach and found four blue grains of sand immediately' so it was a blue sand beach. Um, that doesn't work.

In this case I clearly think more research is needed.

But what is very sad about this is that I hope it is not the wave of the future where initial results and greatly publicized. Even now it is difficult enough to figure out what medical research really is promising and which is not and is still years out from hitting the market. Media hype might get the researchers more money or help their CVs but it won't help the patients who are supposed to be the beneficiaries in the long run.

Let's please go back to focusing on the patients. We are supposed to be the focus of all the research anyway.

Wednesday, September 9, 2015

The Wrong Approach to Pricing

Here is an example of the wrong approach to pricing medications. That really fancy expensive Hepatitis C drug, Sovaldi, is $1,000 per pill and $84,000 for the course of treatment and the price is justified because it saves on the cost of a liver transplant down the road and long term medical costs for the patient. WRONG IDEA!

It has now been revealed that the poor manufacturer, Gilead Sciences, which justified that price on the above reason, grossed $12.4 billion last year for the sales of Sovaldi alone. Sorry Gilead, I have absolutely no sympathy for you because of the revenue generated in the first year.

Yes, I understand the argument that the expensive drugs are justified because of the resulting reduced treatment costs for the patient in the long term and that the costs of and time to developing drugs is high and many possibilities are dumped after years of work. And that these drugs are developed for smaller and smaller potential patient markets for rarer ailments. But $12.4 billion? I think you got your money back and should cut the price significantly, maybe 1/10th of the current price.

So here is my proposal for new drug pricing: Look at your development costs of that drug that made it to market and the costs of the other drugs that eventually lead to the new drug but were dumped on the way and then price it so that your costs are recouped in five years, not one. And completely forget about the patient's long term cost savings in health costs. That is none of your business. Don't you remember HIPPA? Patient health issues are not your problem. You are providing a product that helps recover from it, just like an aspirin would relieve a headache.

Here's an example. Your current pricing method would allow restaurants to charge $3 for the tasty but bad for your juicy, fatty steak or prime rib and $80 for the  healthy side salad because of the diner's potential long term health problems from eating the steak and ensuing cholesterol and other ailment costs.

The current pricing model leads to insurance companies deciding who should receive these new  medications instead of doctors deciding what is best for their patients - which is the way medicine should be practiced.

Okay, this is all my opinion, to which I am entitled, but I really think pharma companies are doing it wrong.

Tuesday, September 8, 2015


So crowdfunding is a great concept. It helped get a friend's son injured in Thailand home in a first class seat when he was too injured to sit in a regular seat. It helped numerous independent movies get started. It can raise funds to help a family displaced by fire or other disaster.

But what about crowdfunding medical device design and start up? I would never have thought of that. I prefer my crowd funding to go to individuals and not to companies, especially overseas companies which makes me feel there is little or no recourse to get my money back or new product.

What I find a tad scary is companies are using crowd funding to fund the design and meet FDA approval requirements. So even if you think the concept is awesome, why are you prepaying for something that may never happen - and may end up with the 'As Seen on TV' label.

But now it seems companies are crowdfunding their new medical devices. Maybe it may make them get to market sooner but it doesn't speak to the company's financial stability. If you give them money to get off the ground, how are they going to continue to be solvent as the product develops? And what if they need to make multiple modifications to get approval? Will they continue to crowdfund? Go back and ask everyone for more money?

I kind of get the heebeejeebees on this one.

Monday, September 7, 2015

Talking the talk if you haven't walked the walk

This eternally irks me - people who try to talk the talk and they haven't walked the walk. It is when anyone - your doctor, family member, friend, neighbor, cousin's hair dresser's dog walker's uncle - tries to tell you how you feel or should feel or be treated.

And just how did you get this knowledge if you haven't been in my shoes? This is when my friends try to tell me that I will feel better if I take a nap. Or someone else who thinks that I can be cured by something - a doctor appointment, procedure, nap, or something else. Or my former acupuncturist who thought my lymphedema would resolve itself.

I can't forget about the people who tell me about their family member's previous treatment for a similar ailment years ago and how its probably the best thing for me so I should change to another doctor who will give me that same dated protocol.

Let me just say to all of you: you have no idea of what I am going through. I know people who have one or two of my ailments and realize that they only deal with a portion of my life. I think they wonder how I cope.

Then I meet people with one or two of my ailments and/or a whole bunch of other ones and wonder how they cope. I would not attempt to give them any medical advice. Actually those people and I usually get to share tips such as - going to a specific support group, or compare diet modifications for symptom relief, or thoughts on disability insurance. Or we compare doctors and hospitals. But our treatment protocols can be compared but never recommended.

We all realize that we are very different people and our ailments require differing treatments. We are walking the walk so we can talk the talk. We know how to juggle our medications and side effects. We know how to manage fatigue and stress and temperature changes. We understand the significance of ailment progression. We know about long term relationships with doctors. We know what chronic means and how our ailments won't go away and we will continually face health challenges.

If you are not one of these people, please don't give me health advice.

Sunday, September 6, 2015

Prescriptions and regulations and confusion

You might have guessed I take a few prescriptions these days. Actually I have a whole pile. Every weekend I sit down and fill our pill boxes for the week. My husband has one prescription and vitamins. I have a lot more.

I get my prescriptions from three places - the local pharmacy, the insurance company's mail order pharmacy, and the insurance company's specialty pharmacy. I got promoted to the specialty pharmacy this year for some reason. Its not that they really charge more, they just like to make my life more complicated.

What really annoys me about prescription medications are the stupid rules. The latest new rule is that I couldn't just call my pain management doctor for a refill on my break through pain meds (because the new cats hid the other bottle when they 'explored' the shelf in my closet), they had to make sure I had an upcoming appointment with the doctor. They even called me twice to make sure. (Then I explained how the cats hid my prescription which caused me to think that I had run out when I hadn't.)

The other rule that annoys me is that because of the 'opioid' crisis (which I recognize is a real and growing) problem, pharmacies want patients to have used up almost all their prescription before providing a refill. I know that pain medication use can lead to opioid abuse but not everyone.

I am picky about my prescription use. I use one of those lovely box a day pill box for years and have to take pills at three different times during the day (on an empty stomach, after eating, and before bed). If I was really good I would take some pills in the middle of the day as well but since I NEVER remember, that is not going to happen any time soon.

I also think about how often I take certain prescriptions which are prescribed 'as needed'. If I think I am taking them too often, I will take a minute to think how often I am taking them and why and if I need a doctor visit for a potential issue.

I feel I can manage my prescriptions myself and don't think I need any more rules to help me manage them. And about those prices? Well that's another story.

Friday, September 4, 2015

So I wasn't that smart

I admit it. I wasn't that smart. My husband gave me a hard time too. I probably deserved that but I did get him to cook dinner.

What did I do? Something bad to my knee again. So at the end of July, I fell and my knee bent sideways. I ended up at the doctor who took x-rays and ended up at the knee doctor who said nothing but sent me for PT and gave me a knee brace. I have been going to PT but stopped wearing my knee brace last week because its just too hot and uncomfortable and my knee has been feeling  better.

Yesterday I was out on our side porch trying to move stuff around and pushed things sideways with my foot. DAMN. That made my knee bend sideways again. And its swollen and hurts again this morning.

So I wasn't that smart. I am going to skip the gym today and maybe wear my knee brace again (if I can find it). Damn. But I'm not going back to the doctor. And it was healing so nicely. Triple damn.

At least I can easily blame myself for this instead of being a politician and blaming the other party.

Thursday, September 3, 2015

Taking the fun out

"Several studies have linked alcohol consumption to a higher risk of many cancers, including breast, mouth, throat, larynx, esophagus, liver, and colon and rectum. The risk rises with the amount of alcohol consumed."

Alcohol is evil and causes cancer. Great. Thanks. Anything else I need to worry about? Besides walking under ladders, playing in traffic, and walking by yourself in bad neighborhoods.

The latest blog post from Dana Farber's Insight (which is actually a pretty good blog) talks about alcohol consumption and cancer. The American Cancer Society recommends 1 drink a day for women and two for men. An oncologist recommends an occasional drink, if any.

My thought process from being the cancer patient is 'Excuse me I have cancer and my life currently sucks, I might want to drink more often than occasionally.' Whatever happened to the medical advice of hot lemonade and whiskey for a sore throat?

When I was 19 and told I had thyroid cancer, I was told by my doctor that my treatment was done and I should take care of myself, eat healthy, and get plenty of sleep. Thanks. I could have figured that out myself. But I did put a few years of thought into it and decided that I was going to live my life on my terms and not be 'boring'.

I was young and wanted to be a normal person and not 'that girl with cancer' for the rest of my life. So I did things my way. Yes I might drink alcohol. I might have partaken of other substances at different times in my life as well.

I don't want my health issues to rule my life. I want to be normal as much as possible. I want to do the things I want. I may not be able to climb a mountain now or ski down one but I can still go to the beach and out for fried clams. (Eeek! Fried food! Cholesterol alert!) Life requires little indulgences to be fun.

The way I see it, it is my body and my life. If I am not harming anyone else and want to have wine with dinner, I can't see a problem in it. However if you see me on a street corner drinking out of a bottle in a paper bag, feel free to interfere.

Wednesday, September 2, 2015


I don't like change. I like my little 'ruts' that keep me doing the same thing over and over again. And I'm usually okay with it.

However, my health requires me to make changes, regularly. I look back on my life in recent years and can recall many things I used to do, for decades, but do not any more because I can't.

For example, if you have read my blog for a while, you may note that I used to go for a daily walk. Every day, rain or shine, I would go out for a walk, usually a fairly substantial walk for an hour. I really enjoyed it. Now the idea of an hour walk has me cringing inside. I can't. Its a combination of all my issues which make it impossible for me to even think about more than a 20 minute walk.

I also used to do more than go for long walks, I would climb mountains, go skiing, ice skate, bike ride, and more. I was an outdoor person. Now I am more of an indoor person. I have watched so many Lifetime movies that I know the plots of some of them by heart. (My husband believes these will rot my brain but I beg to differ on that.) After being out and about for a bit, I need to come home and sit or lie down and relax. Then I turn on the TV or read a book or knit.

As I age*, I am learning to accept change more. Well, okay, sometimes I struggle with change and sometimes I make changes intentionally. Yes I did change my PCP but I think that's enough change for a while.

Unfortunately my health may force more changes that I am not ready to make. Damn.

*I am not that old. I am still 37. And this article which talks about mental sharpness in older people - defined as over 50 - made me feel old!

Tuesday, September 1, 2015

The new doctor

So I met my new primary care yesterday. I think I like her. What's interesting is that what she is concerned about with my health are not the same things as my other doctors.

First of all she called me anemic. My red blood levels have never been the same since chemotherapy. Even though my last chemo was in December of 2007. No one else has ever said something about it. But she said its not that bad since its within one standard deviation of normal (that took some recall of calculus and statistics to make sense).

Second of all, she was interested in what she called my missing blood counts - Vitamin D, Vitamin B12, cholesterol, and more. So I am going for a whole pile of blood tests probably tomorrow morning because they require fasting.

Third she wants to see me with all my test results in about a month to get back to me.

Finally, she talks a lot. But she also listens. So I guess this has a chance.

Call me optimistic.

I Started a New Blog

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