Saturday, August 31, 2013

Sharing the burden

Recently UPS was criticized for dropping employee health insurance coverage for spouses who are eligible for health insurance through their employers. But that's only 15,000 people. The majority of their drivers and other employees are covered through Teamster's Union benefits so they will not be affected by the change.

A recent article called Employers Play Obamacare Blame Game discusses reactions to the shared costs complaints and how other companies are reacting to the upcoming changes.

The whole point of mandatory health care is to have a healthier population. This requires change. So of course employers are going to start shifting burdens around as much as they can. Companies which have provided the most benefits I am sure will be some of the first to start making changes.

There is a separate requirement, starting in 2018, where employees who offer richer policies will be required to start shifting more of the costs to employees or start paying a penalty.

People are dying or going bankrupt due to lack of medical care or the high costs associated with it. We need to share the burden and can't assume our employers or the government will hand us everything we need. Its part of taking our place in society and being a contributing human being.

There are those, including me, who face health or other issues, who can't contribute as much as others. But that doesn't make them any less of human beings.
If you do not like the current and upcoming changes for whatever reason, then you can do your part by cooperating with the existing legislation and work to find ways to change it.

What this is all called is change. Get over it. Change is needed to make health insurance more affordable and health care more available. Our current system does not work. Insurance companies, not doctors, are making decisions about the health of people.

Friday, August 30, 2013

Dieting and such

Here's a theory: skip focusing on which diet is best and start focusing on changing eating habits.

This translates to stop focusing on what we eat and getting the balanced diet and change to focus on how we can get people to make healthier food decisions. Are we eating because we are stressed? Do we have bad habits related to the drive through where we make a quick stop on the way home and eat the food in the car?

Researchers look at all sorts of diets - Paleo, Atkins, Weight Watchers - and compare them all. The FDA issues the nutrition pyramid which is now a plate. But does anyone stop and look at the eating habits we have developed and why we have them?

We live in a world full of light this and fat free that and a widening population. Why?

I used to work with a woman who was a fairly healthy eater at work. She did not snack, she didn't go out for donuts. But she was quite large. I never really figured out why.

Then I went on a business trip with her and  she insisted we stop at the grocery store on the way to the hotel so she could get some stuff for her room. I was happy to go and get some seltzer (my secret addiction). She bought a couple boxes of crackers and cookies - for a three day business conference. I think she went out and made another grocery run later on. I think she was an evening snacker - hence her hefty weight.

So why does a normal, bright, well educated person, sit and eat for hours at night by themselves? That is the question to answer.

If you watch the greater loser shows, people talk about their bad eating habits and are taught how to eat healthy -  no soda, no drive through, healthy snacking. They also get exercise and lose weight. But they change their eating habits. Maybe they eat more salads and fewer french fries but often these shows are accompanied by tears and emotional breakthroughs as well.

I know my weight stems from three issues I have.
  1. At my job, there are more snacks than any place I have ever worked and the kitchen is right next to my office.
  2. I snack after dinner which I shouldn't do. (Why did I eat that granola bar after dinner last night? I didn't have dessert is my justification and I wanted something crunchy. But I didn't need it.)
  3. Sometimes I eat when I am not hungry because I am bored, stressed or in pain.
So if I can get rid of those habits, I can lose weight. I have been working on them, my weight is going in the right direction. The funny thing is I am still eating desserts sometimes and normal food. I didn't switch what I eat. I switched when I eat. My goal is to modify my eating habits so I can get to and maintain a healthy weight but still enjoy eating. I will no live on lite versions of crappy prepared food.

Maybe that's what researchers need to figure out so other people can more easily lose weight.

Thursday, August 29, 2013

Hospital visitors

When I am hospitalized, I have a list of people who can visit me. They include my husband, my parents, and my siblings. Anyone else has to call and ask. I am serious about this. If people visit unannounced, they will find out how rude I can really be.

My strong feelings about this are due to the fact that once, after a significant surgery, a friend had to stop at the hospital for an early morning appointment, the day after my surgery. So she decided to stop by my room at 830am. I was not ready for guests.

I was talking to someone who was a friend and a nurse who was giving me some information. I did not want to socialize. She didn't understand the concept of good manners and to think that the morning after major surgery might be a bad time to visit someone.

When I am in the hospital:
  1. I probably feel like crap.
  2. I probably look like crap.
  3. I am probably cranky.

Its not that I don't want visitors at all - they do help the time go by - but my goal is to get better enough so I can leave as soon as possible. If I can't get my naps in, I won't be able to get better.  I find the concept of visiting people in the hospital for hours on end to be a bit ridiculous.

I actually feel sorry for the patient's whose families come to visit and stay for hours in big groups. If you are sick enough to be in the hospital, you don't want to host a party, you probably want to take a nap.

There is a hospital in Hawaii which has started the policy of visiting hours 24/7 and let the patients set their visiting times. This was done at patient request citing a study that found that people surrounded by family and friends heal faster and cope with their hospital stay better.

At first I was pretty appalled by this. But then I started to think.

There are lots of people who work odd shifts or have child care issues or travel distances or work nights and I can go on and on that have off hour schedules normally and are used to getting a lot of sleep during the day wherever they are so why should hospital visitation be any different?

Hospitals are where they wake you up for a sleeping pill or to take your blood and vital signs at 2am. So you might as well have a friend hang out with you for it.

Wednesday, August 28, 2013

Trust

Most people you meet, you generally don't share lots of private information until you have gotten to know them. Your doctor is different. You go see a new doctor for whatever reason and then you start spilling your guts on the state of your gut and other body parts.

If you think about it they are a stranger. I sometimes have to scrape doctors off the floor when I start telling them about my issues and allergies - they all love the fact that I am allergic to benadryl. I have had them start laughing too - with me, not at me.

But it is all about trust. How much do you really trust a stranger?

I think we believe doctors are ethical and honest human beings, with the best interests of the patient in mind. Personally I believe people are honest and ethical for the most part and don't start to lose trust unless I feel betrayed.

I don't mind if my doctors talk about me together in order to figure out how to best treat me. But I would be really upset if my doctors were trying to scam me. You hear the horror stories. I have blogged about a few of them as well. Here's a story with some more but also some good advice:
  1. Research your doctor. 
  2. Make sure your doctor isn't practicing outside his/her field.
  3. Be cautious of doctors who advertise too much.
  4. Ask a nurse or other hospital support staff.  
  5. Get a second opinion.
Be an educated patient, do your homework and most importantly pay attention to your gut (feelings).



Tuesday, August 27, 2013

So are you an inpatient or an outpatient?

The hospital and Medicare get to decide. Not your doctor who is actually treating you.

I found this pretty appalling. Medicare patients can be in the hospital for DAYS and be called and an outpatient because they are only being 'observed'. They get the same care as everyone else. But then they get a big fat bill if they were an outpatient.

Their doctor can even admit them and make them an inpatient but then the hospital can change it back to outpatient. Hospitals like this because they get reimbursed more that way.

"Medicare originally intended observation care as a way to give doctors time to evaluate whether a patient should be admitted to the hospital or is stable enough to go home, usually within 24 to 48 hours. But hospitals are increasingly keeping patients in observation status longer: 8 percent of Medicare recipients had observation stays longer than 48 hours in 2011, up from 3 percent in 2006.
Apparently the government can tell by looking at a rule book to figure out how sick you are, not but diagnosing you and reading your chart. Or, God forbid, even talking to you.

That increase may partly be a response to aggressive reviews of hospital billing practices in recent years. Medicare contractors have demanded refunds from hospitals that admit patients the government believes should have been treated as observation patients or outpatients. Medicare pays hospitals less for those patients."

And also hospitals are now rated on their readmission rates. If you aren't admitted the first time, you are not readmitted later on.

"Toby Edelman, senior policy attorney at the Center for Medicare Advocacy in Washington, D.C., said she believes hospitals also could be trying to avoid readmission penalties, which are assessed if too many patients are readmitted within 30 days. Harold Engler, for example, went home after five days, grew sicker, and then returned for another five-day observation stay. If he had been an inpatient, he would have counted as a readmission within 30 days."

Hospitals claim they are working on it because they computer tells them what to do. The computer even knows more than the government:

"Dr. James Hart, who heads a Beth Israel Deaconess committee that makes sure the hospital follows Medicare rules, said he could not comment on Engler’s case. But he said the hospital uses a sophisticated computer program that tries to match patients with the correct Medicare designation based on their illness and the intensity of hospital services required. “We are very focused on getting the level of care accurate,’’ he said."

Medicare knows this is a problem and even has created a brochure on this telling patients the difference. But if you are sick in bed, do you really care about semantics? No.

"Case managers generally inform patients of their status, especially if they require skilled nursing care, he said. But that doesn’t mean patients digest the information, at a time when they have so much to focus on. “Part of the challenge from a patient perspective is there really is an information overload,’’ Hart said."


You just want to feel better and go home where you can be in your own bed eating real food instead of the crappy hospital food they serve.

I knew Medicare had its issues but I didn't think it was out to impoverish seniors. I thought it was supposed to be the other way around. Clearly some changes need to be made here.

Update: 8/30/13 - One of the former heads of Medicare wants the rule on observation to be abolished.

Sunday, August 25, 2013

Geographic variances in breast cancer

Recently a  new strain of triple negative breast cancer was found in Ghanian women. This is a strain that is not found elsewhere. The result - a new treatment needs to be developed.

It is a fact that different groups - ethnic and racial - are diagnosed with different diseases or types of diseases at different rates. For example Ashkenazi Jewish women develop breast cancer at a higher rate than other women.

But I have never heard of a new variant of cancer being diagnosed by geographic area.

This opens a whole new direction for cancer research. Women from different parts of the world could be influenced by their local genetic, food, and environmental factors which could skew research results. I don't know how much this is taken into account by the pharmaceutical industry.

I do know that drugs are developed and tested world wide and then start getting approvals from the FDA and its counter parts in other countries. To be eligible for these clinical trials, patients have to meet specific criteria. The rates of clinical trial participation vary from city to city, state to state, and country to country, for a variety of reasons. But this means it is possible that patients who do not meet the criteria could have specific variances in their disease that are not noted.

Am I making sense? Sometimes I wonder.

The point I am trying to make is does current cancer research focus on the big groups that fit into the clinical trial criteria and not take into account the little subgroups that are now being discovered?

Saturday, August 24, 2013

The guilt factor

This is a less discussed issue relating to cancer diagnosis and treatment - the guilt factor. Sometimes its not even mentioned, while other times it is just brushed off as something you need to learn to live with.

Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.

But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?

The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.

It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.

Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.

Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.

Friday, August 23, 2013

New Breast Cancer Guidelines

The St Gallen International Breast Cancer Guidelines were recently updated to include the Oncotype DX test for breast cancer as the only screening tool for women with early stage ER+/Her2- breast cancer to determine the benefit of chemotherapy.

On some levels this is great news but again it is not for all women. The criteria for the Oncotype DX test for breast cancer are:

"You may be a candidate for the Oncotype DX breast cancer test if you are medically eligible for chemotherapy and:
  • You have been diagnosed with stage I,II or IIIa invasive breast cancer.*
  • Your breast cancer is estrogen-receptor positive (ER+) and Human Epidermal growth factor Receptor -negative (HER2-) and you do not have lymph node involvement (also known as lymph-node-negative breast cancer).
        OR
  • You are a post-menopausal woman recently diagnosed with node positive, hormone-receptor-positive, Human Epidermal growth factor Receptor -negative breast cancer"
The problem is that while most women have ER+, Her2- and node negative breast cancer, not all do. For example, I was not given this test because I had one tiny positive lymph node. Apparently they are starting to do some testing on women with node positive disease. The Oncotype DX test is also available for colon and prostate cancer as well.

I have digressed. I do like the fact that this test is available for some if not all. I do like the fact that it is covered by most insurance companies. I do like the fact that it helps determine if a patient will benefit from chemotherapy before they receive it. I do like the fact that it is part of standards for treatment.

I do not like the fact that it is still part of the conversation about treatment - do you remember the little analogy - an ounce of prevention is worth a pound of cure? Why can't we put that into the guidelines?

Thursday, August 22, 2013

Its all about the language

Who calls it a relapse when cancer recurs? I didn't know anyone did. It has a different connotation. But maybe in Australia its common.

There is a new bit of medical research (because we have to keep those researchers working) in Australia where they found a gene that half of women with estrogen positive breast cancer have. If women have the gene, they could alter the timing of chemotherapy.

Basically a basic blood test could determine if patients have the gene. 

"The test would be used to determine when cancer cells are most vulnerable to chemotherapy, which would be used to kill them off and prevent a relapse.

At present patients with this type of cancer typically receive anti-oestrogen therapy and generally respond well. Within 15 years, however, half develop drug resistance, followed by relapse and death."

How's that for putting it morbidly? Nice - huh?

"Scientists believe the anti-oestrogen therapy weakens the BCL-2 gene, which protects the cancer.

The idea would be to test all patients and correctly time the use of chemotherapy to kill off the cancer and prevent a relapse when the gene is sufficiently weak."

So its much more specific.

But its a theory now and has to go through testing and trials and don't go holding your breath because it will be quite a while.

I just wish that they could be a  little nicer in their phrasing and skip the damn word 'relapse'.

Wednesday, August 21, 2013

The Battle of The Bulge in History

I never know where I am going to end up on the internet these days. Its really amazing - even without the cat here to help - he is very helpful in websurfing.

Yesterday I found the historical battle of the bulge or "A Slim History of Dieting" on Ancestry.com (see you never know where I will end up).

Its pretty funny. I can tell you that we are much safer these days in our dieting techniques. Previous diet tips have included that fat people should move to swampy areas or "daily cold baths, lots of exercise, chastity, temperance, and hard mattresses".

Personally, I would prefer watching what I eat vs. daily cold baths and living in a swampy area.

Tuesday, August 20, 2013

Stupid me

I have excuses. I have chemo brain. I have fibro fog. But sometimes I am just plain stupid. This was one of those times.

We are on vacation (note to all the burglars - we have a house sitter and our neighbors know we are away and we don't have anything valuable anyway). Two weeks before we left I made a big project to make sure we had enough of prescription medications to get us through our trip. I checked all of the bottles, refilled a couple.

The day before we left, I went through and filled up our medicine boxes - daily ones - with enough pills to get us through. I carefully packed my break through pain pills. We then designated a little tote bag for all of our medical needs. The first tote was rejected because it was too small so we moved to a slightly larger one. This is serious business.

Then I packed up some over the counter medicines including some Emergen-Cs - you know the packets of vitamin C. I put those in the little zip pocket because they are flat. I put in Tylenol, Mucinex and all that kind of thing.

The next day I went and put elastic bands on the pill boxes so they would not pop open in transit. Then I put in the extra prescription bottles  and double checked and triple checked. I had everything I needed.

As we went out the door I said to my husband the only thing that would get me to come back home would be if I forgot any medication. I told him that I had it all under control and had triple checked it twice.

We arrived on Sunday after driving 90 minutes (we are on the beach if you must know). Monday is pain patch change day. I am on Butrans pain patches - they last a week and provide a consistent dose of opiate medication to keep my pain all under control.

I went to get a replacement patch. THEY WEREN'T THERE!!! What I thought were replacement pain patches were the Emergen-Cs. Damn, triple damn, [insert all obscenities you know here].

Yesterday I went with plan A - taking my breakthrough pain tablets every four hours. It wasn't enough. At all. I didn't even tell my husband until last night. His first question was when was I going home to get them? I said I hadn't decided.

This morning I decided. I was in so much pain. I got in my car at 10am with the plan on going home and coming back by 2pm so I could enjoy the beach. While driving, I was trying to decide what didn't hurt. The answer was my right shoulder. [But now that is hurting too.]

I had to lie down for a couple hours before I could contemplate driving back. Now that I am back I am finally getting to blogging and have taken pain pills and am lying on an ice pack until I feel better.

I was really stupid.

PS The cat is royally pissed off at me. I left. He is not happy. He doesn't eat when I am not there. He will just have to suck it up until I get home.

Monday, August 19, 2013

When Its Not News!

But you think it is. Yesterday I was cruising through the Health section of cnn.com, reading an article here, and another there. At the bottom of each article were links to more articles. I was reading titles, clicking, and reading some more.

I always look at the cancer one, in case they have discovered a cure and I missed it while sleeping or something. The one I saw yesterday was called "Chemotherapy Game-Changer for Stage IV Cancer". Immediately intrigued, I clicked the link and landed here.

Its looks like a lovely article on chemotherapy and stage IV cancer patients. ITS NOT! Its a paid ad or blog post or whatever.

A week or so ago, I was also cruising around the health section of cnn.com and found this article on inflammation which I found barely interesting and biased. It was titled "Chronic Inflammation is the Fuse for Cancer" and it also was an ad. And from the same website, Envita.com, which is the website for a bunch of medical centers.

I felt duped. I found a link on cnn.com and thought I was reading articles, not ads. I did some more poking around and found that it seems there are always more ads linked in among the true articles.


The third article down on the left is titled 'The Secret to Sleeping Throughout the Night". Its basically an ad as well. You will note the source - Simple Skin Care.

I don't think CNN is trying to scam us. I think the stores at the bottom are found by search engines and compiled there - which is why when you go back to the article, chances are the list is different. Its the advertisers who are trying to fool the search engines into thinking they are news and not a load of propaganda.

So the moral of the story is basically 'buyer beware'. Just because you think its news doesn't mean it is.

Sunday, August 18, 2013

Time for a change

Through the past forty years, there have been changes in the way we view and treat breast cancer. It started with the 'lets cut out as much as we possibly can'. Radical mastectomies were carried out regularly, permanently disfiguring patients - both emotionally and physically. And leaving them with life long health problems of lymphedema and more.

Gradually, times changed and focused more on detection with the advent of mammograms. My original cancer book printed about 1980, says that they were just beginning to recommend regular mammograms as screening for breast cancer. After this the Komen foundation began to promote early screening which some how devolved into the pink ribbons, pinkification, sisterhood and giant pink wave that overtakes the world every October.

The Komen foundation has managed to give themselves several black eyes in recent years which are proving their downfall. However their efforts, along with that of many other,  have greatly helped destigmatize the disease, allowing people to shout the word cancer instead of whisper it in corners.

But as Karuna Jagger, (www.twitter.com/karunajagger) Executive Director of Breast Cancer Action, points out, its time for a change from this pink world to one where we focus on what is really important:

"As the nation's attention focuses on breast cancer during Pinktober, let's stop selling women a false narrative about screening, and instead advocate for more effective treatments, less treatment when possible, and fewer breast cancer diagnoses in the first place. It's time we change the breast cancer narrative once again."

We do not need all the pink to focus on these efforts.

Saturday, August 17, 2013

Let's put it all in perspective

If the lifetime risk for a woman of getting breast cancer is about 12.5% or one in eight and it increases as you age, and you can reduce your risk by losing weight, cut out the refined sugars and booze, how much better off are you really? I mean, let's keep it all in perspective here.

Friday, August 16, 2013

Starting my big break

I am about to leave for my last doctor appointment for, drum roll please.... SIX WEEKS! I have not had a break like this in years. You may think I am kidding but I am not. I have to go back to like February/March of 2007 since a break like this.

I resolve to stay healthy and not need any medical care until October.

And I only have five more appointments scheduled for the balance of 2013. Plus at least two more set of blood work. I wonder what miracle caused that? Maybe I am getting healthier. 

I will also add that my back is significantly better than it was after the trigger point injections.

No time for a big blog post today because I am late!

Thursday, August 15, 2013

Chemical food

I have never been a fan of what I call 'chemical food'. Well not now. I admit there was a period in my life where I lived on Tab and Diet Coke and went to fast food restaurants occasionally. (I also admit that my favorite food of this lifetime is fried clams.)

I am snickering sarcastically these days at the idea that Coca Cola is trying to reposition their artificially sweetened sodas as not being so bad. Ahem, what is that they say? Its not bad? Oh, come on.

In my personal opinion and I am neither a nutritionist nor a doctor of any sort, coke and diet coke are not health foods. A healthy food has to meet one of three rules to me: Either it has no more than five ingredients or it is handmade and full of natural ingredients or no scary, unpronounceable or unfamiliar ingredients.

This is what is in these two beverages:

Coke's official ingredients: Carbonated water, sugar, colour (caramel E150d), phosphoric acid, natural flavourings (including caffeine).

Diet Coke's official ingredients: Carbonated water, colour (caramel E150d), sweeteners (aspartame, acesulfame-K), flavourings (including caffeine), phosphoric acid, citric acid. Contains a source of phenylalanine.

They clearly fall into the category of chemical food. Phosphoric acid is a rust inhibitor, dental etchant, and a food additive. It gives food a sharper taste and slows mold and bacteria growth. But it might eat away your teeth.

Another comparison between healthy food and chemical food is yogurt. How about yoplait light vs. Fage fat free Greek yogurt.


Yoplait includes aspartame, potassium sorbate, acesulfame Potassium, Red #40, Vitamin A Acetate, Blue #1, and Vitamin D3 with a note that for Phenylketonurics that it contains phenylalanine.

Vs. the ingredients in Fage fat free Blueberry yogurt which is my preferred brand.

INGREDIENTS

STRAINED YOGURT: Grade A Pasteurized Skimmed Milk, Live Active Yogurt Cultures (L. Bulgaricus, S. Thermophilus, L. Acidophilus, Bifidus, L. Casei). BLUEBERRY FRUIT PREPARATION (20%): Blueberries, Cane Sugar, Water, Corn Starch, Contains 2% or less of: Lemon Juice Concentrate, Natural Flavor, Xanthan Gum.


So why does a better tasting and healthier product actually contain natural products and has smaller market share? Marketing monopoly? I don't know.

The best and easiest comparison for anyone is the butter vs. margerine comparison. What is in butter: cream and possibly salt.

What is in margarine (I Cant Believe its Not Butter):

Ingredients: Water, Vegetable Mono and Diglycerides (Adds a Negligible Amount of Fat), Rice Starch, Salt, Gelatin, Lactose (From Milk), Soybean Oil (Adds a Negligible Amount of Fat), Vegetable Datem (Adds a Negligible Amount of Fat), Coloring, (Potassium Sorbate, Calcium Disodium EDTA) Used to Protect Quality, Natural Soy Lecithin, Lactic Acid, Artificial Flavor, Vitamin A Palmitate, Beta Carotene (Color).
 
You can do this too - buy your bread in the fresh bakery section of the grocery store or better yet at an organic bakery vs the bread aisle  where the bread was made weeks ago and sits in little packages in a row that might have been shipped across country.

I vote with my feet and buy the healthier way. Go get a laugh and watch some of the Coke commercials for artificial sweeteners.




I find the ad somewhat offensive in that it only says two things: asparatame is safe and obesity is a big problem in the US.  If you switch to diet coke you may no longer be obese. I say save your money and drink some water.

Wednesday, August 14, 2013

A Human Pincushion

My upper back h as been bothering me for a while. I haven't been sure if something new is going on, if it is referred pain from elsewhere in my body, or the pain was hidden by the horrible pain I had in my lower back until the successful procedure where nerves were killed off in my lower back in June.

Last week I broke down due to back pain and called my pain doctor. I thought I wouldn't be able to get an appointment before October because it usually takes that  long. They said 'how about next Tuesday'. I said 'sure'. So I went.

We have never treated my upper back before because it has not been a problem. Its not rheumatoid. Its not cancer metastasis (the first thing that jumps into any cancer patients head). It could be fibromyalgia. It could be myofascial pain. Or it could be something else.

The doctor, after pushing on my back to make it hurt, suggested trigger point injections where he makes a series of intra muscular injections on my back in the painful areas. He has done this before on my lower back and they relieved a fair amount of pain.

There were five measly injections which he said would cause a pinch... and they were followed by deep pressure pain causing me to breath slowly out of my mouth instead of crying.  The nurse came in to check my vitals after (they do that so patients don't pass out as they leave). When I got to my appt, my blood pressure was 123/78. After the injections it was 103/66.

I nixed the trip to Kohls and the trip to the gym after that adventure and came home to sit with my giant ice pack. I gave my husband two choices for dinner - he cooks or takeout. The delivery guy showed up on time with dinner.

So today I feel like a human pincushion. The doctor did say to take it easy for a day or two. I will see how it goes today at work. I am supposed to meet a friend for a walk this afternoon but it may be one of those days where I can't walk. But I hope that when the shots stop hurting, they will make my back stop hurting.

Tuesday, August 13, 2013

I did get the memo but it didn't help

Eat oily fish, high in Omega-3, to reduce risk of rheumatoid arthritis. That was a memo. I got it. Wthan others. e eat a fair amount of fish - especially since we live within 10 miles of the fish filled Atlantic Ocean. Now I have rheumatoid. Now granted it is in my family but I did follow directions.

What this proves is that not all research is a magic pill. I mean you eat whatever for whatever its benefit is supposed to be so you can reduce your risk of some ailment. There are two problems with these theories:
  1. Some people think that they cannot get the ailment because they did what they were told. They didn't smoke, so they won't get lung cancer. Well you can. You are only reducing your risk.
  2. While they represent advances they are not cures. They are more like suggested life style changes. 
 If asked, I do live a relatively healthy lifestyle - I eat my fruits and vegetables, I don't skip meals, I get exercise, blah, blah, blah. And I am probably one of the least healthy people around. So just because I got the memos, doesn't mean they helped.

Maybe I'll be cranky today.... My back hurts. Some days I am just more cynical than others.

Monday, August 12, 2013

Just because they tell to you doesn't mean you have to

Taking synthetic thyroid hormone pills are a pain in the neck (literally). Its only a little pill but it comes with all kinds of rules.
  • You have to take it one hour before eating or four hours after eating.
  • You have to wait at least four hours before taking vitamins, minerals - especially calcium
  • You need to take it by itself basically.
  • The pills are sensitive to heat so you shouldn't have them shipped to you in summer.

You also can't switch from brand to brand or even to generic. Some people do not respond well to different brands. There are all kinds of issues here. You can read about them here if you really want.

Thirty years ago when I started taking synthetic thyroid, they didn't tell us all these things because they didn't know. Now they keep adding more and more restrictions.

My bottle comes labeled with all of this:
  • Take this medicine on an empty stomach. Preferably 1/2 to 1 hour before breakfast.
  • Take this medicine with a full glass of water
  • Take this medication at least four hours before taking antacids, iron, or vitamin/mineral supplements.
  • Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. Take or use this medicine exactly as directed. Do not skip doses or discontinue unless directed by your doctor. (This last one is written twice in tiny, tiny print. They could have written it once in bigger type.)
I have never understood the full glass of water business for any pills. What are we going to choke? I guess someone probably has so the lawyers got hold of it and said to drink a whole glass of water so I should temper my sarcasm. But it is a little, teeny, tiny pill.

I take my pill (or half pill - my dosage is a full pill every day except Mondays and Fridays where I take half a pill) first thing in the morning and wait an hour before I eat anything. I do have my coffee with it but that's it. (You get big points in the world of synthetic thyroid hormones just for consistency and taking your pill the same way every day.) I take the rest of my giant pile of pills at the end of the day except the one in the middle of the day that I always forget.

But...

I have a friend who doesn't have a thyroid either and she takes all her pills - synthetic thyroid, vitamins and prescriptions -  together during the day when ever she remembers. And she is just fine.

So just because they tell me to, doesn't mean I have to.

Sunday, August 11, 2013

Time flies when you are having fun

Or when you are a space shot. It is now 330pm in the afternoon and it just occurred to me that I did not blog today. I mean I thought I did. If you had asked me what I blogged about I probably couldn't have told you - but that's not unusual as I am a space shot at times.

Also, it is 330 in the afternoon and I haven't gotten much done. I mean I didn't sleep late but I didn't do much else. I did go to Kohls for a few things bright and early. I got some gardening done. Chatted with a neighbor. Got some cooking/food prep done.

But I haven't folded laundry. I haven't made the bed. And I need a nap.

The big news of the day is I have one little passion passionfruit and three baby limes growing, and a bunch of buds of my lemon tree. I will have fruit this fall. I am very excited.

So I will go make the bed and then fold the laundry. Then I can lie down on the nice neat bed for an hour or so and pretend I am having a nap.

Or you can just call me a spaceshot.

Saturday, August 10, 2013

Going through life needing a nap

That's me. Yesterday I went to bed around 10pm and woke up at 9am. Today I did the same thing. I did lots of nothing and got motivated to go to the gym. Now I need a nap. I also should do laundry but that may not happen. Or I will con talk my husband in doing it.

The dilemma of the day is do we cancel on a friend who was coming for dinner because I am not sure I am up to it. I'm not sure going out to dinner would be any easier either. And I am not sure we are going to the beach tomorrow even though I really, really, really, really, really, really wanted to go.

If I do too much I get tired. I mean really tired. I mean able to sit on the sofa and watch bad TV without caring for hours.

I work three days a week which means I have to get up and go to work on those days. But then I have to get caught up on my sleep. I am told that you really can't make up for lost sleep but I try anyway.

Doctors have said to me - are your thyroid levels okay, are you exercising too much/too little, are you doing too much, are you taking all your medications when you are supposed to, are you eating healthy, do I get enough iron/fiber/vitamins, etc? In other words, they aren't sure.

I have my own theories: Fibromyalgia causes fatigue. Rheumatoid arthritis causes fatigue. Living in pain is tiring. Stress is tiring.

In the meantime I'll take a nap and think about it.

Friday, August 9, 2013

Preventive Medicine or Too Much of a Good Thing

When do we draw the line for preventive medicine? The latest ASCO guidelines for high risk, post menopausal women to prevent breast cancer recommend proactively taking Evista, Aromasin, or Tamoxifen to reduce risk. I had already heard about Tamoxifen but not Evista or Aromasin.

When I first read this the first thing that jumped into my tiny chemo-fogged/fibro-fogged brain is this a big ploy by the pharmaceutical companies to generate millions of new patients? That would be a huge conspiracy theory that I immediately pushed away.

The next thing that leaped into my tiny chemo-fogged/fibro-fogged brain is that its getting to be that we need to stop enjoying ourselves and live preventatively with no fun? The guidelines end with:

"If you have a higher-than-average risk of breast cancer, it makes sense to do everything you can to keep your risk as low as it can be. There are lifestyle choices you can make, including:
  • maintaining a healthy weight
  • exercising regularly at the highest intensity possible
  • limiting or avoiding alcohol
  • limiting processed foods and foods high in sugar
  • eating healthy, nutrient-dense food
  • not smoking"
I felt this is getting to the point of  ridiculousness. I mean 'healthy, nutrient-dense food' - can you please define that? I am sure it does not include chocolate or ice cream. If I went to the grocery store and asked for 'healthy, nutrient-dense food', I think they would look at me like I was crazy.

And exercising regularly at the highest intensity possible? This is getting to be too much in my book. Just tell me to live healthy and I can handle that.

I am not dissing ASCO here. They are a wonderful organization but I think that this is overkill.

Yes preventive medicine is a good thing but this is too much. I'm sorry.

Thursday, August 8, 2013

Fifteen Days? Really?

This I do not understand. I found an article on the how this new test speeds up the testing of the sentinel lymph node in breast cancer surgery in the UK. Previously it took 15 working days (!!!!) to get the test results. That's three weeks. That's completely crazy.

When I had my (bad) lumpectomy here in the US, I was told the instant test during surgery of the sentinel node had a margin of error of 50% and it really wasn't worth doing. The sentinel node was checked by the lab after surgery to confirm the results. I know several women who were told that the test they had during surgery was wrong so I guess my surgeon was right on this.

Now that was six years ago so technology must have changed and now there is a new test available in the UK for instant testing of the sentinel node during surgery. I hope the margin of error is less now.

But I digress. I just do not understand why it takes a lab in the UK 15 working days to confirm the presence of cancer. Three weeks? In my non medical understanding it is a relatively quick test - not like the ones which need to grow cells or something.

I remember being promised my results within a week and getting them in about four days. So why does it take three weeks on the other side of the ocean?

Wednesday, August 7, 2013

DVR/Tivo dependency

Before breast cancer, I was perfectly happy with out cable tv and without recording certain shows. I would stay up late and watch shows and I would use commercials for food and bathroom breaks. 

Now I am a DVR/Tivo junky. I have probably nearly 20 shows I record and watch while too tired to do anything else. I am a fan of reality TV. (There I admitted it.) I prefer cooking shows, HGTV and Lifetime movies (but sometimes I think they take the same plot and recreate a new movie).

I realize technology has changed in the last six years as well but I am dependent.

Last night to my dismay I found out on Facebook that a favorite show had started a new season weeks ago and I DIDN'T KNOW IT!'We recently switched from a DVR to a Tivo due to technical issues and had to set up all our recordings again. Apparently I am not perfect. I will have to watch two episodes online before catching up on the TV.

See my dependency? Its a good thing I only work three days a week so I have time to watch all my shows.

Tuesday, August 6, 2013

I knew it wouldn't last

What was I thinking? Last week I blogged about privacy and not having a doctor appointment, other than a therapist appointment until October. I should never have opened my mouth. I did have a dentist appointment last week which has resulted in another dentist appointment tomorrow (no cavities).

I broke down yesterday and called my back pain doctor. In spite of the procedure at the end of June, I have discovered I have a lot of pain in my upper back pretty much non stop. I don't know what is going on with my back but it hurts and isn't giving up.

When I called to make the appointment with pain management, I expected to find there ws nothing available for several months - which isn't uncommon with that doctor. When they said next Tuesday at a convenient time, I practically fell off my chair. He usually has a months long wait list. I just got lucky I guess.

Well maybe we can figure out why my stupid back persists in hurting in this most annoying of fashions.

Monday, August 5, 2013

Today I am a normal person

First I overslept (but still have time to blog - a tiny bit). I forgot to take all my pills last night so I have to figure out which ones I should take this morning vs which ones I should skip but I have to wait 1-3 hours before I can take any of them after my synthroid. That was after I put my pill box back together after dumping three days worth on the floor and having to sort them all out again. I think I am still missing two pills but as long as the cat doesn't eat them I can cope.

I wanted to leave for work early  but that doesn't look like its happening. I have showered. I have not eaten breakfast - I will do that when I arrive at work. I did make lunch for both of us. I have not yet brushed my teeth or my hair but my gym bag is packed.

Last night I was running around the back yard in my PJs at 10 pm with a flashlight looking for the damn cat who got out the basement door. This  morning I get an email from my next door neighbor that she has a raccoon on her back porch. I would generally not worry about the raccoon but since my cat is 18 years old, blind, deaf, and can't smell, he wouldn't know a raccoon until he walked right up to it.

Damn. I am now really late. Off I go as a normal person.... or as normal as I can ever be.

Sunday, August 4, 2013

Test Dilemma

This week a new recommendation came out that people at high risk for lung cancer - particularly current or previous heavy smokers - should be screened for lung cancer with CT scans. This is another way that cancer can be detected at an earlier more treatable stage.

'Great,' we say. On the surface this seems like a good idea - catch a cancer early on and save more lives. Advanced testing options which have become relatively more accessible and affordable over the years have opened up testing options for millions.

But, and there is a big fat BUT here, does the additional screening add false positives which equal expense and stress for the patient? This is the same argument for women who have had breast cancer that they all should have MRIs in addition to mammograms each year to screen for recurrence.

All this wonderful new testing does great things. They find things that are something 'bad' and catch it early. They also find things that are big enough to see but too small to do anything about. And where does that leave the patient?

Medical advances are great but sometimes the advances exceed the capabilities that are required to diagnose and treat the findings.

This does not even touch on the issue of over testing and the emotional toll. Whether a positive or negative result, the testing experience is an emotional roller coaster ride for the patients. False positives and false negatives are realities in the results. Non test is 100% fallible so these do take place.

Me, personally, I am a big fan of the lets waiting and watching at this point. Unless I have symptoms I am not bounding off to see the doctor. I don't want more tests. I am happy this way.

Saturday, August 3, 2013

Health discrimination

Discrimination can be in many forms. Sometimes its overt and sometimes insidious (I can use big words today but needed spell checker's help) and sometimes hidden away. But now health discrimination based on weight? That's taking it a bit too far.

A chef from South Africa was told by New Zealand authorities that he was too fat to live there. He has been there for six years and has lost 66 pounds since arriving. He now weighs 286 lbs which is not healthy unless he was really, really tall. Upon renewing his annual work visa, he was told his weight would cause health problems and they didn't want him. A little ironic since obesity is a big problem with 30% of New Zealanders being obese....

This is clear health discrimination. So what if I decided to move to New Zealand with my health background? Would I be welcomed? I have many more health problems than being fat. I would be a burden to any health care system....

So seriously New Zealand. Really? If 30% of your population is obese maybe its time to work on your national health guidelines instead of singling out a chef who has actually lost a fair amount of weight.
----------------------

Now on to happier news. I always wonder if anyone reads my blog and anyone cares about what I write. But apparently people do read it and do care. I am honored to say my blog was just named as one of the top 24 breast cancer blogs of 2013 by Healthline. I have a perky new label on the right and you can read about all the other blogs which also named here. I recommend following them to keep up on some great stories with coping with breast cancer.



Friday, August 2, 2013

The FDA - a little background

We all love to hate the FDA. I mean they are the people that take food off the market, have all these rules and things that make food cost more, delay the acceptance of new medications, and cause pharmaceutical companies to have all these years of research driving up their 'costs' (which get paid by patients in the end, one way the other).

So why do we have an FDA? How did that happen? I never really knew or thought much about it. I just thought it was another one of those big Washington based alphabet agencies making rules and spending the public's money.

I try to assume that people are going to do the right thing and not rob, steal, or corrupt. People generally do mean to do their best and help others. But this is not always true,  hence the reason for all the government and policing.

Meat packing plants were a wealth of horrors. Its surprising more did not die from food from them.
It is a well known fact that the nineteenth, and probably earlier, centuries were full of patent medicines where you might kill yourself thinking you were healing yourself. Who knew what was in them. These were exposed in an article called "The Great American Quackery" which ran in Colliers Magazine in 1905. This resulted in the Pure Food and Drug Act of 1906.

Finally in 1938, after over 100 people died from taking a patent medicine full of a toxin, the Pure Food and Drug Act was passed which required manufacturers to prove their products were safe. This lead to the creation of the Food and Drug Administration.

So that is your little history lesson for the day. I am heading out for a dentist appointment on this rainy morning....

Thursday, August 1, 2013

A simple test

Right now the only way for a doctor to diagnose fibromyalgia in a patient is to press on a bunch of tender points. If more than so many of them are sore, the diagnosis is fibromyalgia. How easy. Not.

First of all when a patient shows up complaining of pain, other tests are done to rule out all sorts of other conditions. This can take time. As in months or years even.

It takes three to five years for a patient to be diagnosed with fibromyalgia. That is a really long time to live in pain. And often fibromyalgia is diagnosed with other conditions.

I was told I have fibro and have rheumatoid. We are trying to get the RA under control so we can then focus on treating the fibro pain. I was also told that it is often impossible to distinguish pain caused by RA vs. the pain caused by fibro.

I am in the state of still trying  to get the RA under control so we can talk fibro pain.

But now there is good news. There is a new diagnostic test to diagnose fibromyalgia. It is supposed to be 99% accurate. The problem is that it costs $744 and most insurance companies do not cover it. [That needs to change.]

And even more good news there are two more tests being developed that look at blood markers to diagnose fibro. These are still in development but represent lots of progress.

I will talk to my doctors about the new test and to my insurance company. Because the diagnosis criteria are relatively vague, in my mind, I think I would prefer a solid yes/no test. And if it could reduce the three to five year time frame to diagnose fibro for others, even better.