Monday, November 30, 2015

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

Sunday, November 29, 2015

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.

Friday, November 27, 2015

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.

Thursday, November 26, 2015

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.

Wednesday, November 25, 2015

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.

Tuesday, November 24, 2015

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.

Monday, November 23, 2015

The blind leading the sighted

I get so disappointed when I find cancer support activities lead by those who have never been diagnosed with cancer. Its a huge disappointment.

I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.

They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.

This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.

In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?

In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.

How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?

Sunday, November 22, 2015

Prescription freakiness

I got this email on Friday:

"The following prescription(s) received in Order #"XXXXXXXXXXX on 11/19/2015 cannot be filled.

We can't fill one or more of your prescriptions because the drug was not available, and we have no approved alternative from your prescriber."

So helpful. I had no idea what this was for. Which medication, which doctor, which ailment.

So first I called the specialty mail order pharmacy (because some of my medications are 'special') and I can't look up those prescriptions on line. After dealing with the 'helpful' automated attended for far too long and two phone calls, I ended up with someone who told me it wasn't in that part of the specialty program. She tried to transfer me to the regular mail order department but I ended up in telephone limbo.

So I hung up and made call #3. The woman I spoke with put me on  hold to research it and then when she picked the call back up, somehow I got disconnected.

So I hung up and made call #4. The man I spoke with told me that they couldn't fill it because the prescription came in without a medication on it. Very weird.

Even weirder was that it came in from a nurse practitioner in the dermatology department on Thursday where I had an appointment with another NP.

The more I think about this, the freakier it is. How did a prescription get to a pharmacy for me when it wasn't for me? I can only think that this someone didn't realize that they were logged into my account on their computer when they went to enter a prescription for someone else.

This is not a good thing. I will call them tomorrow to discuss this. There is no excuse for this. I know people are busy but when it is dealing with patients and medications, they need to double check what they are doing and make sure they are looking at the correct patient.

Just think if you were in the OR and they were looking at someone else's chart?


Saturday, November 21, 2015

Animal trainers not doctors

Okay, this is getting to be a bit too much. I'm sorry but cancer detection by animals? Well, birds too.

This all seems to be going on in the UK. First of all, pigeons are being trained to read breast cancer imaging to diagnose breast cancer. Yes you read that right. Pigeons. You know the 'rats with wings' (as I call them) that populate many cities.

"Pigeons, with training, did just as well as humans in a study testing their ability to distinguish cancerous from healthy breast tissue samples."

I am so happy to hear that we no longer need radiologists to read our mammograms for breast cancer diagnoses. Instead of 3 years of medical school and four years of a radiology residency, we can have pigeons trained for a few weeks who can spend their lives reading mammograms.

"After two weeks of training, the pigeons reached a level of 85% accuracy. Because they successfully identified cancerous tissue from images they had not seen before, the researchers ruled out rote-learning of the images as an explanation."

Talk about a birdbrain.

Next we have dogs who sniff out cancer. I have heard of this before. We have Lucy's story. She failed guide dog school so her owners thought they should try medical detection instead.

"For the next seven years, Lucy learned to sniff out bladder, kidney and prostate cancer, and was even used in a study. Over the years, she has been able to detect cancer correctly more than 95% of the time. That's better than some lab tests used to diagnose cancer.

Now, Lucy is part of one of the largest clinical trials of canine cancer detection. A British organization, Medical Detection Dogs, has eight dogs sniff out 3,000 urine samples from National Health Service patients to see whether they can discern who has cancer and who doesn't."

Is this a good use of our medical research dollars? I am not so sure. I know people claim their dogs have sniffed out their cancer or stay very close when they are sick but again I do not think a dog is good substitute for a doctor. This research may make us think we need more animal trainers instead of doctors.

You think I make this stuff up? You can read about it the pigeons and the dogs.

Friday, November 20, 2015

The next stage of my life

I have been developing a plan, a wonderful secret plan. My plan is for the next stage of my life. It will be to focus on taking better care of me. It may sound a little selfish but I need to focus on me.

I have stopped working, taking a 'retirement', so to speak. I stopped working because of my health. When getting through a four hour day, two days a week, was tiring me out, it was time to take a step back. I felt like I was running from one event to another and then not getting enough rest and being fatigued. I constantly felt tired. Yesterday I went back to the office for a few hours and was told I looked 'rested'. That is a good thing.

We are moving to a house which will allow me 95% one floor living. Our current house is a cape. Our bedroom is on the second floor so everything I need is downstairs, except the is a bathroom on both floors. The laundry is in the basement which is two floors down (and back up). I feel like I constantly go up and down stairs, when often I want to skip the stairs. I have been minimizing trips up and down because the stairs are too much work sometimes.

The new house has all three bedrooms and two bathrooms on one floor as well as the kitchen, dining room, and living room. I can do everything pretty much and stay on one floor. The laundry is downstairs but its only down one floor. There are some stairs outside the front door but they are gradual. I will need to go downstairs to get to the garage. But only when I want to. Lots less up and down.

The next step is to find ways to get me out of the house. I will continue to go to the gym three times a week. I have also contacted a local cancer support community about using their services and volunteering. Once we are unpacked, I will start going there every other week or more often. I will also have more time to go see my parents and do their grocery shopping and driving as necessary.

My long term goal is to be more rested, less fatigued, and get enough sleep. I also want to focus on the emotional me so I am getting the support I need and helping others for that sense of satisfaction. And lose that stupid 30 lbs I have been carrying around.

Thursday, November 19, 2015

The thyroid cancer myth: the 'good' cancer

Another patient is reaching out and speaking out on thyroid cancer being the good cancer. You can watch the video here (because my technical skills do not allow me to embed the video) or read the article here.

"The reason thyroid cancer is commonly called the good cancer, according to Dr. Brose, is because it is highly treatable, but still no less frightening and life changing. Take it from thyroid cancer patient Victoria Ballesteros.

“For me the impacts were felt immediately from having severe complications from my surgery and then of course, five years later I’m still struggling with a lot of physical impacts every day,” Mrs. Ballesteros said.

Even though Mrs. Ballesteros has thus far received a clean bill of health from her doctors, it hasn’t slowed her efforts to dispel the myths associated with thyroid cancer. She still suffers from a lack of energy, weight fluctuation and trouble regulating her body temperature, as well as the emotional stress that accompanies any cancer diagnosis."

So its not just me. Actually I know many others who go through this with thyroid cancer. None of us think its a good cancer. Just stupid people do.

Wednesday, November 18, 2015

The other side of health insurance

Its a matter of opinion. Yesterday I blogged about the affordability of health insurance and issues around it. I got an anonymous comment which said:

"I think it's really about the good old US of A being the ONLY developed nation that still does not provide universal health insurance. We are like fish oblivious to the water we swim in, it doesn't have to be this way."

This made me think. I think that the benefit of the ACA was to offer more affordable health insurance options to many. No matter how flawed the system may be. My opinion is that the health insurance industry had Americans over a barrel and were blocking people from getting health insurance due to previous medical conditions or jacking up their rates so they became unaffordable. Also, bankruptcies due to medical bills were climbing.

HOWEVER

As a rule American's do not like being told what to do. We want and enjoy our many freedoms. The opposite of freedom is confinement or limitation. Its a matter of choice of what we want. Also, many people want smaller government and do not think the government should interfere with their lives.

While I like the idea of social programs such as medical care and social security, we should not become a country of spoiled brats where we expect everything to be given to us on a silver platter. The government has many responsibilities and cannot give everything to everyone, unless you want to live in a socialist or communist state.

I, for one, am very pro-health insurance and its affordability. The industry demonstrated that it could not affordably insure us by focusing on their profits and not our health. The government took a fairly drastic step and made them change their ways which turned into the ACA.

It's definitely not a perfect system and requires us to sign up for health insurance as a way to provide a huge pool of both healthy and sick people to balance things out. But I do not think that the government was supposed to be in the business of  being a health care provider.

And if you can find any country's universal health system that is perfect, please let me know. I have heard too many stories from too many countries about long delays for care, people who pay for private health care because the national program is poorly run or poorly staffed, and lack of access to testing equipment.

The other side of health insurancwe

Its a matter of opinion. Yesterday I blogged about the affordability of health insurance and issues around it. I got an anonymous comment which said:

"I think it's really about the good old US of A being the ONLY developed nation that still does not provide universal health insurance. We are like fish oblivious to the water we swim in, it doesn't have to be this way."

This made me think. I think that the benefit of the ACA was to offer more affordable health insurance options to many. No matter how flawed the system may be. My opinion is that the health insurance industry had Americans over a barrel and were blocking people from getting health insurance due to previous medical conditions or jacking up their rates so they became unaffordable. Also, bankruptcies due to medical bills were climbing.

HOWEVER

As a rule American's do not like being told what to do. We want and enjoy our many freedoms. The opposite of freedom is confinement or limitation. Its a matter of choice of what we want. Also, many people want smaller government and do not think the government should interfere with their lives.

While I like the idea of social programs such as medical care and social security, we should not become a country of spoiled brats where we expect everything to be given to us on a silver platter. The government has many responsibilities and cannot give everything to everyone, unless you want to live in a socialist or communist state.

I, for one, am very pro-health insurance and its affordability. The industry demonstrated that it could not affordably insure us by focusing on their profits and not our health. The government took a fairly drastic step and made them change their ways which turned into the ACA.

It's definitely not a perfect system and requires us to sign up for health insurance as a way to provide a huge pool of both healthy and sick people to balance things out. But I do not think that the government was supposed to be in the business of  being a health care provider.

And if you can find any country's universal health system that is perfect, please let me know. I have heard too many stories from too many countries about long delays for care, people who pay for private health care because the national program is poorly run or poorly staffed, and lack of access to testing equipment.

Tuesday, November 17, 2015

The costs of health insurance, or what to do when that tree falls?

Before the Affordable Care Act, there were millions of Americans with no health insurance and facing bankruptcy due to medical bills. Now with the ACA, there are still millions of Americans facing medical bills. The biggest problem is high deductible health insurance policies.

As a way to keep costs down, many people opt for high deductible plans. These are ones with deductibles as high as $13,200, which is the out of pocket maximum expense allowed under the ACA. So there are some very unhappy people who still cannot afford medical care.

Okay, I get this. People try to keep their insurance costs low and opt for high deductible plans. This makes sense. But if you have any health issues its not going to help you. If you have health issues, you need a plan with a realistic deductible that fits your medical needs.

At a previous job, available health insurance policies varied. My office was next to a guy who was married with four kids. For me it was a no-brainer, I needed some coverage and I didn't mind paying a higher co-pay to reduce my premiums (because I used to be relatively  healthy), and only went to the doctor a few times a year. But for my co-worker with four young children who went to the doctor regularly it was in his best interest to keep the co-pay low as he was going to be using his insurance much more frequently. Everyone's needs vary.

The whole point of insurance in general is to cover you in case of an issue. With your mortgage, you are probably required to have home owners insurance in case a tree falls on your house. No one wants to have a tree fall on their house, but sometimes s**t happens and a tree falls. Would you rather pay your home owners insurance policy every year or cross your fingers and hope that tree doesn't fall? And the more expensive your house, the more expensive your policy will cost. But if you didn't have insurance and that tree fell and damaged your house and your neighbor's and your car, you might be facing a $50,000 bill.

Medical insurance is the same thing. You want insurance in case the tree falls on you (and your house). There is no way to predict when that tree will fall but sooner or later, it probably will. So you want insurance just in case. If you have a low income, the math gets more complicated. If you want to keep your premiums low and opt for a high deductible plan, that needs to be part of your plan for daily living and budgeting.

If that tree falls without insurance you would be faced with some big bills and if you don't get medical care, you might not make it or face long term medical issues if not treated. So what would you do then? How would you pay for that care? What would you do? Crossing your fingers and hoping for the best is not a good choice.

Ideally we could all save enough to cover our potential medical expenses, and for that exotic vacation we all dream about and have that six months living expenses set aside in case of job loss. But reality tells us that is not always possible. The lower  your income, the more difficult it is to save any amount.

With insurance you know what your maximum out of pocket expenses will be so you have an idea of what size bill you can expect. Even if you are low income, you need a plan. Would it be a second job, a shop on Etsy or reducing your living expenses?

Its not really about the costs of health insurance but the costs of staying healthy.

Sunday, November 15, 2015

3000th blog post

My blog post is not about numbers or volume or anything like that but recently I realized I was nearing 3000 blog posts. Today is number 3000. My blog started June 2, 2007, 3089 days or 8 years, 5 months, 14 days ago.

I set out blogging as a way to vent my feelings and keep my friends and family updated through breast cancer diagnosis and treatment, which would be a year or so and then I would return to my 'new normal'.

It didn't work out that way. Not many of my local friends or family read my blog. I am still working on that 'new normal' (and if anyone ever finds it, please let me know where it is), and my health still sucks, even though there have been no new cancer misadventures.

I still benefit from my nearly daily blogging. It allows me a way vent my feelings on my sub-par health which is really what I need. I also like to think my so called 'words of wisdom' have helped others deal with breast cancer and other not so fun medical crap.

Along the way I have also met many wonderful people online who are dealing with their own medical crap and they have become friends, although we have not nor do I think we ever will meet in person. But we are friends. And as a result I have a bunch of greatly appreciated supporters when I go through my own bumps in the health roller coaster.

I think I will keep blogging, I see no reason to stop as long as it continues to help me.


Saturday, November 14, 2015

There's basil in my coffee and other worries

If there is one thing I have learned over the past eight years of health crap is to roll with the punches. I need to deal with what I can and learn to cope with the rest. I try to keep my life on an even keel as much as possible. I usually do unless 'something' happens.

I don't have the energy to go overboard at any little thing. I need to save my strength to cope with it all and not lose my sanity, or anything else important. Because I have no way of telling what could be next.

It has been more than eight years of medical crap. Ten years ago I had a hysterectomy and then 18 months later breast cancer and so much more since. But I think I am doing okay these days, although some may disagree.

My latest health aggravation is my knee. Not being a candidate for knee surgery has put a damper on my hopes for life without a knee brace. And my knee isn't bad enough so I could have a knee replacement - but I have always believed there is no reason to have one of those unless absolutely necessary. And Its not necessary. But I will whine bitch about it to my therapist and rheumatologist and see if any solutions come along. Or medical research comes up with a new way to fix it.

And life goes on. I will cope and move on.

This morning while making coffee way too early, I thought I grabbed the bag of mulling spices so I could throw a few in to the coffee grinder to add some flavor to the coffee. Nope, it was basil. I tried to pull most of it out but there is a hint of basil in it. But its not bad. I can deal with it.

Friday, November 13, 2015

There's nothing good about thyroid cancer

Thyroid cancer is often called the 'good' cancer. There is nothing good about any cancer. Even though thyroid cancer is slow growing and results in proportionally fewer deaths than most other cancers, it does have significant impact on the patients.

Now new research shows that there is a significant decrease in quality of life after thyroid cancer diagnosis and treatment. Personally I am very glad to see this study as I have always felt me it threw me for a (really big) loop and took me a long time to recover.

"A quality-of-life assessment tool measuring physical, psychological, social and spiritual effects was completed by all participants. Researchers also collected data on demographics, medical comorbidities, tumor characteristics and treatment methods. Most participants were recruited from survivorship groups (79.2%)."

I think that because of the unfortunate increase of thyroid cancer rates that this research was warranted.

"Distress of initial diagnosis, distress of ablation, distress from surgery, fear of a second cancer and distress from withdrawal from thyroid hormone yielded the lowest individual quality-of-life scores."

Um, I could have told you all that. Decades ago. And yes my worst fear did come true when I was diagnosed with a second cancer.

Thursday, November 12, 2015

Medical reversals

We all hate them. These are when you received a medical treatment and find out months, years, or even decades later we find out from new research it wasn't helpful or could have even been harmful. We justify it to ourselves that it is because the medical world was using the best information available to them at the time and they had no way of knowing.

I have found this out for myself numerous times with my medical history. Treatments that I received are no longer accepted practice.

Now there are a couple of doctors out there who wrote a book on how we need to change these 'flip-flops' in clinical practice. They are actually called 'medical reversals' (not the most aggravating thing you can find out about your medical treatments). Here is a quote from the article:

"...hormone replacement therapy as being sort of the seminal reversal for doctors of his generation.

The thing that really was seminal for me was the routine use of stenting for stable coronary angina. It's a very costly and invasive procedure, and it continued to be done in a very widespread fashion. The evidence for it was always unclear and then in 2007 with the publication of the COURAGE trial, a lot of the evidence was contradicted."

We all remember HRT was found that it was later shown to actually increase the patient's risk for breast cancer.

"In every case of our book, we found an example of something that was perfectly logical, it was incredibly plausible, it made perfect biological sense, but it was broadly accepted without those definitive confirmatory studies to really prove it actually does what you think it does. And in the years that followed, people over time became a little bit more skeptical of it and eventually some brave investigators said hey, you know what? Let's sort this out once and for all. Let's put this to the test.


Their point is that we need a huge overhaul of our medical system to prevent these 'reversals'.  I couldn't agree more. The old way of doing things, based on traditional ideas and ways of doing things, needs some change.

"...we do advocate for a complete overhaul. A couple of chapters talk about how doctors are trained and how academics should work. A couple of chapters talk about how drug and device regulation should work. A couple of chapters talk about what our professional responsibilities are."

They advocate for a lot of change which will take a good deal of time. I think this sounds like a great first step in identifying how we are now able to say, and should say more often 'more research is needed' and 'are we really doing this the right way?' I know I get frustrated when I hear about a medical breakthrough that might help me and then hear that more research is needed. But now I understand better why this is said.

Wednesday, November 11, 2015

PTSD

PTSD has been noted in people diagnosed with cancer. But unfortunately the main group of people who are diagnosed with PTSD are the soldiers who see and experience horrible things while serving our country. I know what I went through emotionally with two cancer diagnoses. I got myself lots of support to help me cope.

I can't imagine the veterans who come back after fighting overseas who are waiting for a diagnosis, never mind treatment. We are letting them down as individuals and as a country.

What if you were diagnosed with cancer and then couldn't get an appointment to see your doctor or anyone for months after? You were stuck in  limbo with a horrible diagnosis and could do nothing for your treatment. The emotional roller coaster would be unimaginable. And add to that if you were already physically ill at the time of the diagnosis and couldn't get any care?

This is how I feel we treat our veterans. They come home from serving their country and can't get the care they need once discharged. They are stuck with a bureaucratic nightmare called the Veterans Administration which treats them horribly, has too small a budget, and not enough medical providers.

Today is Veteran's Day. Take a moment or ten or more, to thank a veteran and do something to help one or many. We owe it to them.

Tuesday, November 10, 2015

Gene editing to cure cancer

Okay, I admit I know about the 'genome project' but have basically ignored it because I did not understand much about it. And I still don't understand much about it. But because of what was learned about genomes and genes, there have been advances in what can now be done to treat cancer and other diseases.

So there is a little girl in England who was diagnosed with ALL (Acute Lymphoblastic Leukemia) shortly after her birth that was very aggressive and recurred seven weeks after treatment ended. They ran out of treatment options and as a last ditch effort, they used a gene editing tool to save her life. Since the treatment four months ago, she is doing well and is at home with her parents.

I don't really understand it well enough to explain it all. But you can read about it here.

Its too soon to tell if this is actually the cure that was hoped for and what the long term effects will be. There is  no way of telling if this could some day work for more children with cancer.

What I do find interesting is that this represents a big advancement in cancer treatment and represents the first steps in what the future could be.

Monday, November 9, 2015

Medical research and me

Finally a study for me, sort of. In a recent study, they found that women with breast cancer were more likely to be diagnosed with thyroid cancer in the five years following their initial diagnosis. And vice versa, with thyroid cancer, you are more likely to be diagnosed with breast cancer.

So I am not really in the study because my cancers were 26 years apart. But its nice to get some logic for my medical crap.

The more complicated explanation is:

"The authors wrote that those second primary tumors detected within 5 years of the initial primary diagnosis show “favorable histopathological findings and prognosis,” especially in TC patients subsequently diagnosed with BC, and thus close monitoring for BC may be beneficial.

“Although the increased incidence appears to be principally due to increased detection rates, the greater expression of estrogen receptor and progesterone receptor in BC in patients with co-existing TC suggests that a specific molecular pathogenesis might underlie this association,” they concluded."

So whatever a 'histopathological finding' is and 'molecular pathogenesis' might mean, there may be some kind of reasoning behind my cancers.

As a patient, I hear about studies and clinical trials and more and they never seem to relate to me very much. Because my medical history always is different from everyone else. Its nice to have a study that could explain some of my medical stuff.

I have always been the patient who was too young for cancer, not likely to have rheumatoid, etc. But since I got all them anyway, even though I 'wasn't supposed to', I often am outside all normal parameters.

Saturday, November 7, 2015

Stress

I hate stress. I haven't been getting a lot of sleep recently. Why? Stress. We are house hunting. We actually have sold our house and have just over two months, preferably less, before we have to be out of our house. And today starts craft show season where I am busy every weekend now through mid December.

And house hunting is no fun. We sold our house quite quickly. We haven't found a house to buy. Well we have made several offers - we lost the first one because they misled us and let us think they had other offers in. Then they wanted to keep taking other offers until we sold our house. The next house had an accepted offer in by the time we got ours in - two days after it went on the market. The third house seller actually went with another offer, even though we think ours was higher.

Last weekend we thought we found 'the' house. We made an offer which was accepted. We had a home inspection and found that house has so many problems its barely livable. The minor stuff mold in the attic, failing lolly columns which support the first floor, and a completely rotted out back wall that needs to be replaced. All are significant safety issues so we said no. (And now the house is back on the market with no mention of any of the issues.)

Yesterday we found another house. We are making an offer. We have our fingers crossed. And the stress goes on.

At least its not medical stress. Well there is some of that as well as my knee doctor has told me I am not a good candidate for ACL repair surgery because of my RA. We are in 'wait and see'  mode for another few months.

Friday, November 6, 2015

Important but scary clinical trials

We always hear about these new lifesaving drugs that are discovered and going through clinical trials. The good part of clinical trials is that they help other patients who get their diagnosis later on. It is also supposed to help the current patient who has a late stage disease for which there is no cure.

There is a scary side to clinical trials for these late stage patients. Will the new drug kill them or cause horrible side effects?

As patients we hear about clinical trials and how new drugs are always coming out and if we go on clinical trials they will help future patients. 'You are doing something good as well as trying to save your life.'  That is the Rah-Rah-Take-One-For-The-Team attitude that pushes forth on the wave of clinical trials. You can do it! You are helping others!

But no one ever talks about the fact that the clinical trial drugs are very unproven, which are why they are in clinical trials, and not much is know about them. The official definition of a stage I clinical trial is:

"Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects."

So not much is know about its safety. Will it kill the patient? Will the side effects be horrible and weaken your body so you cannot handle other future medications?

I never really thought about this until I read this article, 'Breakthrough drugs are saving lives but wrenching souls', the other day.

Wednesday, November 4, 2015

More 'wonderful' news for me

I have to stop reading the news, damn it. I have tried to wean myself off the news, particularly medical news, Then I stop feeling educated and start feeling like a stupid patient. And if I stopped reading all news I could skip all elections and their related stupidity and inanity. But I haven't been able to stop, so I keep reading medical news and sometimes I find all sorts of stuff I may or may not want to know.

So today I have all sorts of  'great' news' I am not sure I wanted to know, well some I do like and some I don't.

First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.

"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."

After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.

Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.

"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."

I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.

So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.

I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.

"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."

And did you  know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.

See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.

Tuesday, November 3, 2015

Palliative care instead of chemo for late stage cancer

I've been reading this morning, I'm sorry. Over at Breast Cancer, But Doctor I Hate Pink, Ann blogged about being healthy enough for more chemo as she deals with progression of her metastatic breast cancer (and she is giving away a fitness watch). I started thinking (which can be a very bad thing) about the general yuckiness of chemotherapy and cancer treatment. I hated it. I don't know anyone who doesn't hate it. Its not fun. It makes you feel like crap, unable to eat, while 'curing' you.

Then I read about a nurse with metastatic breast cancer who opted not for cancer treatment but for palliative care. The more I read, the more I like the idea. If there is no cure, why are you spending so much time on trying to cure yourself? This route really appeals to me. She found a doctor who did not push traditional cancer treatment but went for palliative care. After five years since her diagnosis, this nurse is still feeling pretty good. And its much less expensive.

So if you had an incurable ailment where the only options were pretty  nasty - radiation, chemo, surgery - and would weaken your body, why opt for trying to cure instead of making yourself feel as good as possible? Why go bankrupt when there isn't a cure? The bankruptcy isn't just your finances but your emotions and body too.

Monday, November 2, 2015

Good things come to those who wait

Back in 2010, I blogged about wishful thinking for a cure for lymphedema and other things, like cancer. And now, (insert drum roll here), a study is going on in the UK on 'replumbing' lymph nodes after breast cancer surgery. Barbara Jacoby over at  Let Life Happen blogged about this.

So five years after first hearing about this surgery to reattach lymph nodes now there is a trial going on. This doesn't mean I can talk to my doctor about having this surgery any time soon, but I can see the progress.

The world of a patient is filled with hope and waiting. It is nice to see that progress is happening once in a while. We hear about all these breakthroughs but then it is rare to see them start to actually be rolled out. That is when good things come to those who wait.

We just sometimes get sick of waiting so long.

And I would like to point out that there is no way that I will undergo a five hour surgery under local and use my other arm to read a book or use an ipod during it. I will be fast asleep so I don't freak out. Yuck.

Sunday, November 1, 2015

Being a complainer

There is a difference between complaining and being a complainer. I complain sometimes, we all complain. And we should. We should speak our minds and make our wishes known. But if we complain too often we can become complainers where we are either Chicken Little or the Boy who cried Wolf so that when we have real complaints, they get lost or overlooked.

Here is a tale of a complainer who complained so often that her complaints became overlooked and she ended up diagnosed with stage IV thyroid cancer and died from it which lead to a malpractice suit.

I think there are a couple issues in this story. The patient complained so much and spent so much time talking about other issues that it became difficult to discern real medical issues from other issues. Of course her doctor could have done more to figure out the cause of her symptoms but he and a specialist could not find anything that significant and attributed the diagnosis of acid reflux  as the cause, which is very common.

When I am the patient, I come in prepared for my appointment with a list of questions to make sure they were all addressed. I would have also kept the list from one appointment to another to make sure something is being done to find out what is wrong with me. And if it dragged on to too many times I was back in for the same thing with no change or resolution, I would get pushier and want more options.

With my medical background, I know you are never too young, too old, or too anything for a diagnosis.

I also know all medical personnel are busy and need to be told a story about a complaint. Don't say 'I have a pain', say 'I have a pain when I do this or eat this', etc. We need to make it easy for my doctors to get to the bottom of the problem. We don't need to share pictures with them or tell them about the rest of our lives. We need to give the  medical professionals as much information relating to our health problems to help them help us.

We should not be complainers but we should tell about our complaints so we do not end up like the patient in the story.