Monday, June 30, 2014

And how was your weekend?

Sometimes I don't blog about breast cancer but just about life. This is one of those times. My husband and I are convinced that the planets are in retrograde or something or there is a cloud of doom over our heads.

Saturday we went to the beach with my sister, brother in law, brother, niece and nephew. We had a nice big cooler with wheels that my nephew and brother were dragging down the beach. It was packed to the brim with water bottles, cans of seltzer and ginger ale, cut up fruit, ice, and Italian ices in individual cups. At one point my brother picked up the cooler and carried it on his shoulder over the soft sand. He went to put it down and..... dropped it right in front of the life guard chair.

We scrambled and put everything back in. So now there was ample sand included all over everything. We enjoyed the beach, consumed much of the cooler contents, headed out to dinner and then home. The cooler went into the kitchen where I started cleaning the sand off everything. Then I found that one of the Italian ices, a blue one to be precise, had melted and leaked 3/4s of its contents all over the inside of the cooler. So now everything was covered with blue, sticky, sugary, sandy water.

I took everything out of the cooler and I went to dump the cooler in the driveway and spray it out with the hose next to the front door. My husband, unbeknownst to me, had started the sprinkler on the front lawn and I couldn't get outside without getting soaked. I turned around and headed to the bathtub.

And dropped the open cooler in the front hall with its blue, sticky, sugary, sandy water all soaked into the 100% wool carpet runner. It was sloshing around.

I grabbed towels and started cleaning. My husband came down and helped. The carpet and the sandy, sticky, sugary, blue inside cooler went out on the porch for the night. I put it on the top of the car in the sun and sprayed it with water yesterday so I hope it doesn't become an ant magnet with the blue sugary, sticky water. It is continues to dry in the basement. That was plenty to clean up and still more to do.

Then this morning...

I was sitting on the bed next to my husband drinking coffee, reading email, and dropped my coffee cup in my lap on the bed. My laptop was splashed. My lap was soaked. The sheets and bedding are off the bed and going in the wash. I hopped in the shower and removed the coffee from the lower half of my body. But I have a couple more loads of laundry to do today. And only enough detergent for one more load.

How was your weekend? I hope it did not leave a debris field like this resulting in lots of laundry.

Sunday, June 29, 2014

Caroline's version of the future of breast cancer research

We hear lots of about different breast cancer research studies. We always hear lots about different breast cancer research studies. There seems to be a never ending barrage of breast cancer research. and the research always seems to end up with some combination of the ofllowing
  • More research will be needed
  • It will be years before we know the real results
  • It gets more and more personalized and focuses on smaller and smaller groups
  • It will always be waiting for more approvals from the FDA or other organizations
  • It will always get more and more expensive.
So my version of what we will hear about the future of breast cancer research:
  • Breast cancer research will start focusing on individuals or families.
  • The patients and their families will die off before the research is ever finished so it could cure them.
  • They won't be able to afford the medications anyway.
  • And the needed approvals will always be off in the distance.
This is my cynical side talking. You can also substitute any different ailment for breast cancer here. While there has been great progress, it always seems like we never quite get there. Or maybe I'm just waiting for a cure....



Saturday, June 28, 2014

The truth is not inthe number of years for cancer patients

Last week a friend  announced rather publicly on Facebook that she was celebrating 34 years since her cancer diagnosis. I think I have mentioned her in posts previously. My first cancer's diagnosis is 33 years in August. The difference is she was stage IV ovarian cancer in 1980. I was stage I thyroid cancer in 1981. But am only at 7 years out from my more troublesome stage II breast cancer.

At first glance those number seem good. I mean we are still here. But they don't talk about the stress and the emotions behind it. We now have had years to learn to deal with it. By now being more open about celebrating, it is clear we are both doing that.

She has clearly defied the odds. But the numbers do not tell the tale of the life behind it.So we are still here but the truth is not in the numbers.

Friday, June 27, 2014

Further proof Dr Google isn't very good

Another story has come to light on how Dr Google isn't the best adviser for medical stuff. It turns out most people use Wikipedia or Web MD for information on drugs. A new story in the New England Journal of Medicine published recently talks about it.

'"Despite debates over its credibility, Wikipedia is reportedly the most frequently consulted online health care resource globally,” the authors write. “Wikipedia pages typically appear among the top few Google search results and are among the references most likely to be checked by internet users.” Wikipedia, along with Google and WebMD, is where more than half of all Americans turn to for health information, according to the report. 

Researchers found that when the FDA issues a drug safety warning, Google searches about that drug increase 82% on average in the following week. Wikipedia pages about the drug see a 175% increase in views on the day of the announcement.'

The cause for concern is that the FDA does not issue drug safety warnings and update Wikipedia - its left to the general public. WebMD is a little better but it is not proactively updated with things like drug safety warnings. If you need that kind of information you need to follow the FDA on Twitter. So the call is to get the FDA to reevaluate their social media presence''.

I'm not sure the problem is with the FDA's social media presence than there is with that fact that so many people go to Wikipedia for medical information. Wikipedia has credibility issues. It is not based on any specific information but on updates from the community. I never use Wikipedia for medical stuff because I do not trust it.

Dr Google insists in on displaying Wikipedia results prominently in so many search results so of course it is used so frequently. I think we need to learn to use more common sense and switch from Wikipedia to WebMD and other more credible sources.

Thursday, June 26, 2014

Better than a sharp stick in the eye

Or whatever that saying is. This morning I am off to another medical adventure. I love these medical adventures that involve needles first thing in the morning. Well its not first thing first thing. I get breakfast first after sleeping in a little bit.

The reason I am having this is because I have a bony growth on my neck between C4 and C5. As a result I have a pain in my neck and problems with my shoulders and top half of my arms. It lines up exactly with this picture below.

I don't have pain in my arms and shoulders but they don't seem to work always and are uncomfortable. So after discovering this new issue which is life long, not curable by surgery, but only treatable for the symptoms. So I am off to have this wonderful procedure this morning.

I can't wait. It sounds like so much fun.I even watched the video after convincing myself it was okay. But then I'll lie around and be justifiably lazy for the rest of the day.

Wednesday, June 25, 2014

3D Mammography

3D Mammography, also known as digital breast tomosynthesis, has been around for the past few years. Originally I hadn't heard such great things about it but now I have heard more and find it an acceptable addition to cancer screening. Or at least in my opinion, which is what counts for me.

Basically in 3D mammography they take lots of pictures of slices of your breast as opposed to the single image from regular mammography. (Think CT vs x-ray) It takes a little longer for the radiologist to read all the pictures because there are so many of them, but they do  provide much clearer images, better detection, and fewer false positives.

When I went for my annual mammogram a few weeks ago, something I chose not to discuss until I got the results, I had a 3D mammogram. The hospital has added the newer machines in the past year. Their current arrangement is that if you have a doctor appointment the same day, you get a regular digital or screening mammogram. But if you do not have a doctor appointment the same day, meaning the radiologist has lots of time to read all the pictures from a 3D mammogram, that is what you get.

I had decided I see too many doctors and cut back on my radiation oncologist - I don't know why I was still seeing her anyway - and canceled that appointment this year. Some how my surgeons office never scheduled my annual appointment with them, even though I thought I was supposed to be followed by them for life, so I am down two appointments for the year. I will talk to my medical oncologist and my primary care when I see them to make sure I am getting the follow ups I should.

And I learned something, I will have my annual mammogram without a doctor appointment the same day so that I get the 3D mammogram. And my results this year were clean.

Tuesday, June 24, 2014

The VA scandal

I usually limit my posts to topics related to cancer and other health issues but I cannot resist commenting on the VA scandal. It absolutely appalls me that:
  • employees were told to fake data and hide deaths
  • soldiers who were injured serving their country receive substandard health care
  • how wide spread this problem - its not just limited to Arizona.
This is unacceptable behavior for anyone. Why would anyone want to play God and select two gets care? For those of you who were concerned about the 'Death Panels' (remember that idea?) as part of the Healthcare Reform Act should rethink that. Those VA employees who were creating the secret lists and hiding data were playing God with the soldiers.

The whistle-blower in this case should be applauded for coming out and telling the truth about what happened. But there also should be a note made that while she did come clean in the end, shouldn't she have questioned her superiors or gone to another part of the VA - superiors, HR, etc - and asked about being told to lie? Unethical behavior, or even criminal behavior, should not be tolerated by anyone.The claim of 'following orders' does not excuse this at all. If worried about job security, I wouldn't want to work for an organization that wanted me to break the law or work unethically.

I hope that there is substantial reform in the VA healthcare system and our vets are not mistreated like this again in the future. And I hope that criminal charges of negligent death are filed against those responsible.

Finally, it also leads me hope that there are internal audits at all medical care facilities so that this type of behavior can never happen again.

Monday, June 23, 2014

Changing views on breast cancer

Treatment for breast cancer has changed over the past decades. This is a known fact but some of the newest changes are summarized in a recent article in the New York Times, "Outsmarting Breast Cancer". A couple of key points that hit home:

'“The size of the tumor and presence of positive nodes may not matter as much as we thought,” said Dr. Deborah M. Axelrod, a surgeon who directs breast cancer programs at the center. “It’s not even true that if the cancer is metastatic, it’s curtains.”'

While I do not have metastatic cancer, I have long thought that advances in treatment make cancer more of a chronic as opposed to a short life sentence.

'Instead of waiting for cancer to recur in certain high-risk patients, scientists are now developing techniques to outsmart the cancer cell’s aggressive tactics by prompting the patient’s immune system to launch a continuous attack that keeps the disease at bay indefinitely.

I like that one even better - preventing recurrence. Remember an ounce of prevention is worth a pound of cure.

Even lumpectomy could eventually become a thing of the past if these techniques achieve their early promise.'

I really like that. Three lumpectomies later, I am a little lumpy..

'...gone is the simplistic notion that cancer is a disease of abnormal cell division, said Dr. Larry Norton, deputy physician-in-chief for breast cancer programs at Memorial Sloan Kettering. “It’s a disease of abnormal relationships between the cancer cell and other cells in its environment.”'

The cells are hanging out in the bad neighborhood obviously. I had heard this a few years back when I heard Dr Susan Love speak. Bad friends lead to bad things - remember what your mother said about some of your friends?

So change for the good for once.

Sunday, June 22, 2014

Living with in 'The Rule'

We have many not necessarily rules but guidelines and considerations by which we, my husband and I, live. There are the basics, I cook and he cleans up the kitchen. I do laundry and he carries it up and down the stairs. We are generally considerate to each other (except when we choose to annoy one another). And all sorts of other basics that help us live together peacefully for the most part.

However as my health has done its downward spiral, my husband has created 'The Rule'. It is a rule by which I am required to live. It actually has a lot of common sense built into it (so may be he is being smart here). 'The Rule' states that Caroline is not allowed to plan more than one event per day. This means I can't go to the beach and then go out to dinner the same evening. Or I can't go to a day long event and then go out in the evening. I need to plan accordingly.

The reason for creating the rule is to avoid crabbiness. For some reason, he doesn't like it when I get crabby. I just can't understand (insert smirk here).

I have come to realize that this is really about as much as I can do. I look at my calendar each month, I plan accordingly. I work three days a week and shift it around to accommodate doctor appointments and other events. I also go to the gym three days a week. If I work and then go to the gym, while technically being two events, I am okay but I really can't go out that night.

So today I am being sneaky. I met one friend for lunch about half an hour away and then another friend is coming over for dinner. this did not register with my husband as much because he didn't come with me to meet the first friend. So I am sneaking in the second event. But I am lying down now. Everything is ready but making the salad. But I am tired (don't tell him that). I will go to bed as soon as she leaves which won't be late because we have called it an early dinner.

Tomorrow work and then the gym. Tuesday work and the grocery store and to see my parents. Wednesday work and the gym. And so my week goes on. But I will heed the rule as best I can. I don't like being crabby any more than he does.

Saturday, June 21, 2014

About all that research

We hear about new research again and again and again. We hear it is progress. We hear people hail it as the latest and greatest. But what does it all really mean? Sometimes I get frustrated by all the so called progress that never seems to help me... And then how often do the researchers stop and ask the people with the ailment what they think of the progress? I am not sure. The pharma companies always say its progress because it helps fatten their bottom line and they can feel good about helping more people. But what about us? I do know that the DOD has a program where their cancer research programs include consumers - meaning those who have had the ailment - as part of their proposal review program. But do others? I never know. I wish it was part of the information provided when results are revealed - that others who had the ailment can see the potential benefit by the progress as opposed to someone looking at a bottom line. I think I have been disappointed too many times by clinical trials for which I am not eligible and then research that doesn't help me. I do mean I get advice on what to eat, drink, do (or to avoid) but I am still waiting for that magic pill that improves my quality of life. I would like more research to ask those who benefit from it what they really want.

Friday, June 20, 2014

Being an elephant....

Or more on perceptions vs. reality. I talk about losing weight and my deflabbification project but it never seems to work. I have decided my job is very fattening. I sit next to the kitchen and then people bring in nasty things like donuts and cookies... or even make special trips to the bakery next door to get more when the homemade stuff is run out or they just want a sweet thing. And of course they get enough to share. Then there is the snack rack where for 90 paltry pennies you can get a bag of premade, chemical and fat filled, empty calories of your choice. All within 8' of my desk and in my sightlines. As well as the parade of coworkers going by for their share. So I decided I look and feel like this:
Or this:
Last week at the reunion, I was talking to a social worker friend about this (who is less than 5' tall and weighs less than 90 lbs) about how I feel fat and I hate the way I look in pictures. Her calm reply was that we all feel that way. It did help but I still feel fat. I know my downfalls - emotional eating, late night snacking after dinner, on the job snacking and I have promised myself I need to do something about this before I have to buy larger clothes yet again. But I do feel very sorry for this elephant that is on a strict diet to lose 500 lbs during pregnancy no less.

Thursday, June 19, 2014

Supplements and Dr Oz and other medical inspirationalists

The decline of the TV doctor....Or more specifically false advertising of miracle treatments...


Dr Oz and others have gotten rich by using 'flowery language' to promote supplements for weight loss. Green coffee extract? Didn't Oprah make him famous in the first place? That's another show for medical information... Dr Oz is currently spending his days at the US Senate defending his language and promotion of supplements that do exactly nothing and making scam arts rich.

The problem with these fad supplements are several:
  • Supplements are not tested and approved by the FDA and can contain toxic ingredients and can interact with prescription medication. The message here is do not use them without talking to your doctor.
  • Scammers and others quickly hop on the bandwagon and get rich off the people who believe in what they see on TV.
"Just because you see a supplement product on a store shelf does NOT mean it is safe or effective," the FDA website says. "When safety issues are suspected, FDA must investigate and, when warranted, take steps to have the product removed from the market. However, it is much easier for a firm to get a product on the market than it is for FDA to take a product off the market."

While Dr Oz is grilled in Washington, we just need to remember what we have been told previously. Don't believe what  you see on TV or read online.

Wednesday, June 18, 2014

Perception vs reality

I have always had a fair amount of faith in the UK's NHS for taking care of patients. I know it has its pitfalls and snags and that there can be substantial waits for appointments. I really only know the basics on the rest of Europe's national plans. I have always assumed that these well regarded healthcare systems and thought they provided relatively equal and good levels of care with the only variations really based on their financial wealth of each nation.

So I assumed that the UK was providing a fairly high level of care as it is one of the more 'wealthy' nations in the EU. It turns out I am wrong and so are 75% of Brits regarding breast cancer survival. In the UK apparently breast cancer survival rates are among the worst in Europe.  The five year survival rate for breast cancer survival in the UK is 79%, the European average is 82% and France is 86%. In the US its 89.2%.

This brings up two issues to me. First of all it is clear that the UK's NHS is not doing everything right. Second of all, most people receiving NHS are not aware of the issues. So we have a system which isn't working right and the majority of the people who use the system are not aware of this fact. This also reinforces the fact that users of a system need to be aware of its strengths and weaknesses and then take action to help reform the system and to maximize the care the receive.

There is a broad gap between perception and reality.
No flowers today, just a picture of the cat.

Tuesday, June 17, 2014

Surprising people

As I have mentioned before, I go to an amazing gym for dilapidated people. Its a combination of PT and a gym and is full of people with ailments. I see people there daily in wheel chairs, on oxygen, and wearing various types of splints and braces. I know most of the people who go there have medical issues and greatly benefit from the additional support, like me.

When you first join, you get assessed by one of the physical therapists - which consist of three of the four owners - and then work with either one of the exercise specialists or one of the PTs to set up an exercise plan. Then every three months you go back to one of the PTs or an exercise specialist to reevaluate your program.

I went to one of the PTs three plus years ago when I joined. Since then, my health has increased its downward spiral and I decided I needed to go back to one of the PTs and start over. I met with one of the two brothers yesterday to do that.

We started by going through which of my body parts have issues and my medical issues which impact my abilities. At the end of the conversation, he turned to me and said "I had no idea you had so much going on. I see you here going through your routine and did not know".

I had surprised him with my ailments and that I am still exercising. At one point, he did say "I'm sorry" and I said "no you are not supposed to say 'I'm sorry'. You aresupposed to say 'That sucks.'"

But I am a little sore after my new routine but I will be back tomorrow.


Monday, June 16, 2014

On the hunt for healthy food

I traveled home yesterday from the wilds of Wisconsin back to Boston. It was a long day as travel is not the best activity for me. My back hurt to sum it up. We had a two hour drive back to the airport (O'Hare), had to return a rental car and didn't really know where we were going. The weather forecast was also for potential severe thunderstorms....

Our plan (pushed later than originally reserved) left at 645 pm. We wanted to get there two hours prior to allow for car rental return chaos, plus two hours for driving, plus extra time to pad for weekend return traffic. We got to the damn airport at 3pm. No traffic, no car rental return hassles. We had plenty of time.

I was with a friend from college. We took turns sitting with luggage and looking for healthy food options to eat either before or on the plane. Finally she found a build your own salad place. I found a Mediterranean place which had a salad with grilled chicken, a few slivered almonds, and some Gorgonzola on a large bed of lettuce. It looked perfect until I looked at the nutritional information - it was listed as having some where around 640 calories and 55 grams of fat. My jaw dropped. I showed it to another woman who was also looking at food choices. She was equally appalled. Then we decided it must be because of the huge (3.25 oz) container of salad dressing.

We checked another item - a sandwich of turkey, brie cheese and red peppers I think - and it had 630 calories and 70 grams of fat.... I'm not even sure that's possible because there are 9 calories in every gram of fat or something like that. I think. I'm not completley sure.

But either the labels were wrong some how. Or the food was just not good for you.

I ate my salad without dressing and it was just fine. But I really hate travel food. Today I am going to the grocery store and I think we will have some salmon for dinner with a salad and maybe some Israeli couscous on the side. That will be much better.

Sunday, June 15, 2014

Red meat, too? Really?

No more steak??? Bummer. Not that we eat that much red meat but I can appreciate a really good steak and sometimes a juicy burger. But really? Living under a rock doesn't work either because of radon as someone commented here recently.

So how much do all these cancer risk factors really matter after all. We have the things we can't affect for any ailment. In the case of beast cancer, we have things we can't change like genetics, family history, child birth, aging, dense breasts, etc. Then there are the things we supposedly can change such as obesity, alcohol use, tobacco (a whole other kettle of fish, so to say in the cancer world), exercise, steak (now), breathing, BPA, blah, blah, blah... but if we have all the primary risk factors we can't change, how much can our diets and lifestyles really make a difference?

Yes we cab be healthier and make better choices for our bodies, but if the main factors can't be changed how much does it matter if we do? And the statistics can be hard to decipher.

Red meat consumption can raise a risk factor I think 13% for each serving per week. That doesn't mean that if your risk is 10% over your lifetime of getting breast cancer, it doesn't mean that a steak a week puts you at 23%,  or 11.3% etc., it probably means 10.13%, if that much.

I am ready to give up on all this risk factor business now because I can't figure out where I can hide from it all either...

Saturday, June 14, 2014

Taking a mental break

I am traveling this weekend. I went to my college reunion (partly to prove to former classmates that I am not dead yet - but they are concerned about my health and some believe they should protect me safety cones and a rope around me so nothing happens).  Its nice to see them again. We are staying in the dorms and eating in the dining hall just like way back when.

Its also a mental break from the stresses at home. I need a few days away where my health can be ignored while we reminisce.

We had a discussion last night on reasons for happiness. Money isn't important, but more feeling content, enjoying what you do and being able to get a sense of satisfaction from giving back in some way. It was interesting. Money doesn't buy happiness once you can pay for a roof over your head and put food on the table.... just some food for thought this morning.

Friday, June 13, 2014

Shallowness has its place

When dealing with the stress, sometimes we resort to the silly side of life and satire. I mean why not? Its coping as best we can.

Shortly after my diagnosis, I read a great book called "Cancer Made Me A Shallower Person" by Miriam Engelberg. She was diagnosed with breast cancer in 2001 and died from it in 2006. When I read her book in late 2007 or early 2008, I think I threw it across the room when I figured out she died. I was mad. I was not ready for sad endings.

In the six plus years since I have often thought of this book and how I should give it a second chance. It was the first graphic novel I read so perhaps that is part of my response to it. Now, I just read this blog post on the New York Times Well section, living with cancer, Living with Cancer: "Chronic not Cured". Now I think it will read it again. I hope the library still has a copy.


Thursday, June 12, 2014

Trapped in the breast cancer bubble

I look at my life these days and see breast cancer everywhere. I have a breast cancer blog, I have breast cancer groups on Facebook. I have breast cancer friends - people who I would never have met if not for my diagnosis. I have Google alerts for breast cancer which send me a daily dose of updates in the breast cancer world. I get emails from many organizations and websites on their latest news and fundraising efforts. I have more profiles on different cancer websites than I can remember that I should keep updated. I volunteer for organizations that support different cancer causes.

Am I supposed to embrace this into my life forever? Or am I supposed to ignore it and focus on my other health issues? Or should I ignore them all?

I was told a breast cancer diagnosis took a year out of your life and then it would return to normal. I can't remember which idiot told me that one but it is definitely not true on so many levels. I am in this bubble and trying to figure a way out.

I realize that breast cancer is one of the top killers of women in the US each year. But is it supposed to take over each of us as we are diagnosed and change our lives forever? Yes a cancer diagnosis is a life changing event but should it become the focus of everything else as well?

My world is not painted pink, its painted breast cancer.

Wednesday, June 11, 2014

Holy moley!

Moles can predict breast cancer risk? So can living under a rock apparently (because of the radon). But seriously it turns out that moles can predict breast cancer risk because they have the same hormonal sensitivities (is that the right word? I don't know but it makes sense to me) as breast cancer. And that is also true for stomach cancer.

The study found that women with more moles had higher levels of estrogen in their blood than women with fewer. And since estrogen fuels many breast cancers, there is a higher risk present. Sounds logical? Okay sure.

So now we can add having moles to the risks of developing breast cancer. We will just have to add this to the list of things we cannot do anything about  such as genetics, having children, age, and family history. There is nothing we can do but be more at risk. How helpful. Not really.

But I will still get annual skin checks for skin cancer.

Tuesday, June 10, 2014

They could have asked me

Here's a new study (because we always need new studies to keep those researchers busy) on the differing toxicities of chemo regimens given to early stage breast cancer patients. I had the combination known as AC+T which is Adriamycin and Cytoxin for four infusions followed by 12 weekly doses of Taxol. The Taxol was given in twelve separate doses to reduce side effects.

Based on this research, this combination has the highest rate of hospitalizations for patients receiving one of the protocols. Reasons for hospitalizations ranged from neutropenia (low white blood counts), fever, infection, low platelets, dehydration and delirium. I got neutropenia after the second AC infusion and ended up in the hospital for five days on antibiotics. I then had to take preventative antibiotics with the remaining AC infusions.

The study is a retrospective one where they look at the data from patients over a period time. The patients were not screened beforehand so other issues could be factors in their hospitalizations.

But they could have just asked me. I would have told them.

Monday, June 9, 2014

Reunions

I have a significant college reunion coming up this weekend. this is where we will all get together on a small college campus where we spent four memorable years and pretend we are still as young, thin and healthy as we used to be. I think I will get the gold star for the least healthy alumni attending.

I am looking forward to it. It should be interesting. Our graduating class had 209 or something like that. It is not a large school and very much has a sense of community. We are all even staying int he dorms - because its cheap, its fun, and we won't have to drive far away. The hotels are out by the highway, except for maybe one in town.

I am flying out with a friend. Meeting up with another friend after we land. Then driving up to the wilds of Wisconsin where the fun begins. I do plan to hit the campus bar for a beer. When I was there the drinking age was still 18 so it was the most popular and beer filled location on campus. The claim is there is a new foosball table but I will have to see it to believe it. Since we are staying in the dorm which is across the street, I believe I could even have more than one.

My health will make it interesting. I cant stand around and talk with people. I need to sit. I can't stay out late. I need to sleep late and I checked the schedule and there are all sorts of early  morning things on Saturday that I want to be at by 8am. I'll just take it easy as much as I can and drag around my big bag of pills everywhere I go. Yes this is me way back when...



Sunday, June 8, 2014

A bit more on cancer costs

I am starting to see the light here on the causes of spiraling cancer drug costs.
Please watch this short (3 minute) video. It provides a few key points.
  1. Pharmaceutical manufacturers got a drug approved at a lower retail price and then tripled the amount from $30K/year to $93K/year.
  2. Pharmaceutical manufacturers expect the insurance companies to pick up the tabs which really doesn't save any one any more because we get higher insurance rates in return.
  3. Pharmaceutical manufacturers have been known to cut the prices of their drugs in response to market pressure
  4. Pharmaceutical manufacturers claim that it costs $5 billion to bring a new drug to market. 
Even if it does cost $5 billion to get a new drug to market, at $100K/year it really doesn't take very much time to recoup the costs. 50,000 doses at $100K/year equals $5 billion.

Tell me there aren't 50,000 patients who need these drugs? One example in the video talks about a new drug for leukemia. According to the ACS, there are more than 50,000 new cases of leukemia diagnosed each year. So there must be quite a few of them around who could benefit from the medication.

I think I have it now.

Saturday, June 7, 2014

Practice makes perfect

And why its a medical practice. I have had eight surgeries and a billion medical (mis)adventures but I have NEVER asked this question of the person doing the procedure: how many times have you done this procedure? I have never asked that. And this is scary.

A couple of weeks ago I had a filling, a rather large filling to be precise, which is/was borderline for turning into a root canal. I hate the dentist. I hate the drilling and the needles and the potential pain. I am a weinie and have been know to take an ativan pre-procedure to get me through it.

The dentist and I had a big conversation as we waited for the Novocain to kick in. She said if it turned out I needed a root canal she would send me to an endodontist because she didn't do root canals any more. She told me that she said an endodontist would have me in and out  in and hour because that is what they did all day long and they were very good and had the right tools and microscopes and all sorts of fun things I didn't want to hear about it.

Doctors who do the same procedure day in and day out have a much lower rate of errors and mistakes. You really want the doctor who does the same surgery again and again. Go read that article if you don't believe me. But I think its time I start asking questions....



Friday, June 6, 2014

Social visiting and doctor appointments

I have spent a few hours twice this week at the hospital taking other people to doctor appointments which means I was not by myself while I was there. I was there as the designated driver/note taker. These days I go to my doctor appointments by myself again. I went alone for years and then with the second cancer diagnosis with lots of bad news my husband went with me. He also went with me for chemo infusions and for any medical (mis)adventures where I was not able to drive home.Otherwise, I fly solo.

Yesterday afternoon I started noticing groups of people who seem to accompany patients to their appointments. I can understand bring one family member or friend in case of icky news or because of sedation or something. But I can't understand bringing multiple friends, family members, or children.

I was sitting in the x-ray waiting area sitting next to a woman who was watching a tv show on her tablet (without headphones) who was sitting next to a man (husband?) while they waited for another person. There were also several people drinking the prep for one of those 'fun' tests which takes a good hour or two. I think there were at least three patients in that group who had more than one person with them.

The chemo infusion areas are clearly marked that only one person can accompany each patient in the infusion rooms. The patient exam rooms are just big enough for a patient, a medical professional and one other person. There isn't room for another chair.

When is it a social visit to hang out in the hospital waiting room? The hospital is never a 'fun' visiting place. Even the in patient rooms are not fun places to visit. I just don't understand the urge to travel in groups to the hospital. I prefer to avoid the place myself as much as possible.

Thursday, June 5, 2014

I assume it was only Chinese take out.

Yesterday morning I woke up feeling fine. I went to work and felt fine. At lunch, a co-worker and I decided to have Chinese food delivered. Partly because our lunch choices were lame (me) or non existent (her) and partly because they would bring it to us instead of us going to pick it up. We get take out every couple of weeks from the same place and we get two days worth of food for one day's price due to the portion size.

We both ordered the same thing pretty much - a lunch special of pork lo mein but we had different appetizers. I ate the mushrooms, she picked her's out as she doesn't like them. After lunch, my head started to spin and I couldn't focus. She felt fine. I ended up going home from work early and took a three hour nap. I slept solidly.

My husband came home and couldn't find me. He thought I had gone to run an errand or something. Finally he looked up stairs and found me asleep.I slept through the phone ringing, him calling me, the cat walking on me. I was out like the proverbial light as they say.

We had soup and sandwiches for dinner. He had 2/3 and I had 1/3. It helped the nauseous feeling I had. I slept all night as well and could barely drag myself out of bed this morning.

Why is she blogging about this?  Why am I reading this (you are asking yourself)? As I left work among comments about bad food, someone said the fateful words 'or are you coming down with something?'  That is the problem. Compromised immune systems and all that.

Yesterday was Wednesday (in case you forgot) and that is methotrexate injection day around here (and methotrexate is what suppresses my immune system). A few months ago, I had a stomach flu thing that laid me up for 9 days. I was told after I should skip methotrexate if I am sick at all.

So yesterday I thought about it and decided I am going to pretend I am a normal person and do the injection and assume it was a minor Chinese food mix up and not something that can do me in for more than a week.

If I am whining about not feeling well for the next week or so you can feel free to comment and say "I told you so" but sometimes its nice to pretend our ailments do not keep us down and a bad bit of Chinese takeout is all it is. Sometimes we do live in the shadow of our ailments as they interfere with all the little things in life. It was only Chinese take out.


Wednesday, June 4, 2014

Why do I exercise?

Why do I exercise? I read this post on the Huffington Post about a woman with stage IV breast cancer who asked that very question. She isn't giving up on half marathons either. She says its endorphins that keep her moving.

I don't have stage IV cancer and some days just getting downstairs is difficult itself. I read somewhere else recently that only 20% of Americans get the recommended 2.5 hours of exercise each week. That's just pitiful. I am determined not to put myself  in that category.

I also exercise because it  helps me feel better. Really. I may hobble in to the gym but about an hour and 45 minutes later I may hobble out. But in between I get in 45 min - 1 hour of cardio and then another 35 minutes or so of weights followed by 15 minutes of stretching. The benefits to me are huge:
  • cardio keeps me moving which is good in more ways than you can image - your body moves so all your body systems do as well.
  • I have muscles (they may not be big but they are three) and can pump iron with the best of them with my 1 pound weights (yes they are girly and pink)
  • I am flexible, my balance/stability is pretty good, and my muscles are nice and stretchy.
  • I have less pain. My core muscles help me support my wimpy back.
  • It helps me destress. I come in to the gym stressed and leave relaxed. 
I never stopped exercising through cancer treatment. Back then I used to walk every day but I never stopped unless hospitalized. Eventually I found I needed more than a walk and joined a good gym. I go three times a week and try to walk with a friend another day.

But I'll keep going as much as I can.

A new picture of my garden - the azalea in full bloom.

Tuesday, June 3, 2014

More on fancy new drug costs

$1,000 per pill or $84,000 for the full treatment. Those are the costs for a new Hepatitis C drug which is basically curring patients of what was previously a chronic, lifetime ailment which can cause liver problems and then death.

That price tag is a bit steep. The manufacturers developed their pricing based on their costs and what they think they can recoup before the patents expire and/or competition begins forcing them to lower their prices.

The claim is that patients are so much better that they are saving millions of dollars in future medical costs by curing the patients.

I have a problem with the price. And so do insurance companies. Its become instantly the must have drug in the Hepatitis C community - quite understandably so.

The problem is because of the cost:

"But under pressure from insurers, which worry about even greater payouts as more hepatitis C patients clamor for the new pill, state health officials are drafting guidelines advising which patients need to be covered immediately.
The guidelines would help insurers set priorities for treating a virus that can remain dormant for years, or even decades..."

"...State government and insurance industry leaders say patients whose doctors prescribe Sovaldi will be able to get it eventually. But some patients who have been told to wait say they’re the victim of health care rationing — long a taboo in US health care.
Insurers in Massachusetts don’t call it rationing. But they say they will have to adopt a “gated” approach to reimbursing doctors and hospitals for the high cost of the drug if they want to stay in business..."

As more and more breakthrough drugs are discovered with similarly high costs for larger patient groups, this problem is not going away. Patients want the new medications. Manufacturers want to sell them. The problem is the payment part - they are too expensive for the system.

So more pressure on both the system to change and on manufacturers to recalculate their pricing structure. The new medications may be lifesavers but they may make a clear division of the haves and have nots - choosing who can afford them and who can't.

Monday, June 2, 2014

How expensive is your hospital?

I had no idea how expensive my hospital, Lahey Health (formerly known as Lahey Clinic) is compared to other hospitals. Its one of those hidden numbers that your insurance company and hospital conspire to keep unknown as they negotiate rates and fees.

I live just outside Boston, which is home to a few big name hospitals, and refuse to go into the city for treatment. The traffic would drive me crazy. And if I am not feeling well, I refuse to deal with the traffic and feel like crap at the same time.

I have friends who went into the city for treatment and whined about all the traffic they sat in and how early in the day they would have to start to get to a 9am infusion. I just assumed all hospitals cost about the same - namely a hell of a lot because nothing is cheap around here.

But now I know... and drum roll... its 12%-40% less than the big hospitals with the fancy names in town. They have a strategy of creating a network of community hospitals where most patients can go for care leaving the big teaching hospital for the sickest people. (Guess which one I go to?) They have been expanding their network over recent years.

Here is a comparison of the costs from 2012 for an inpatient stay.

The two hospitals that are lower than Lahey are located away from metropolitan Boston.

I will say I am happy to learn my medical care is not straining my insurance plan as much as if I went in town. And I am happier to enjoy my 10-12 minute drive through back roads with no traffic to medical care.

Sunday, June 1, 2014

Risk factors????

Now what the hell am I supposed to do? Look at the length of this list of risk factors for breast cancer!!!!!!!!!

These are the established risks: Being female, age, family history, genetics, personal history of breast cancer,  radiation to chest/face before age 30, certain breast changes, race/ethnicity, being overweight, pregnancy history, breast feeding, menstrual history, using HRT, drinking alcohol, having dense breasts, lack of exercise, and smoking.

Then there are the emerging risks that they are just starting to realize their importance.... (Or but wait, there's more!): Low Vitamin D Levels, Light Exposure at Night, DES (Diethylstilbestrol) Exposure, Eating Unhealthy Food, Exposure to Chemicals in Cosmetics, Exposure to Chemicals in Food, Exposure to Chemicals for Lawns and Gardens, Exposure to Chemicals in Plastic, Exposure to Chemicals in Sunscreen, Exposure to Chemicals in Water, and/or Exposure to Chemicals When Food Is Grilled/Prepared. 


How the hell am I supposed to avoid them? That's it. I am moving to live under a rock!