Tuesday, August 19, 2014

Life with chronic pain

I was very intrigued to read this article on a man's advice on living with a wife in chronic pain. I admit I might be guilty of some of the first ten myself. My husband does pick up on when I am overdoing things and cues me to take it easier.

I also know sometimes when I want to do things and feel like I should do them but just don't have it in me. I try to work around it. I'll lie down for a while and then try later on. Or I'll put it off until the next day. Sometimes I ask my husband to do things for me - like making dinner - because the idea of standing in the kitchen for ten minutes just isn't a good idea.

If you read his list, you will get a better idea of what  life with chronic pain is like. And its all relative. His wife had a C-section without anesthesia (eek!) and that's her high pain point. My high pain point was probably when I tried to stand on my blown out knee on the side of a ski slope. Or when I had my drain pulled out. Or... I don't know. Those were all very painful moments and there are others.

For me when my back hurts so much I can't stand up, I call it a 7. Right now, sitting in bed after a good night's sleep it might be a 4. But I'm not telling my husband so we can play mini golf and go for a walk. I'll sit in the car and let him drive as we go off to have fun. But I'll also take my bottle of pain meds with me just in case it gets a little farther up the pain scale.


Monday, August 18, 2014

Insurer bias - or why insure (expensive) sick people?

One of the big issues with healthcare reform was so that sick people could be insured instead of being left hanging at the mercy of their insurance company. The act did eliminate pre-existing conditions from precluding someone from health insurance. But the jury is still out as to the bias issue.

Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.

For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.

I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.

Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.

Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.

And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.

To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.

Each year  you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?

I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.

Sunday, August 17, 2014

Double mastectomy or not?

The latest fashionable breast cancer decision is to have a double mastectomy in a preventive effort. Well there was a super secret twenty year study going on about the benefits of that very same surgery.

Basically what it boils down to is that unless you have the BRCA gene or other hereditary breast cancer, there is no benefit to removing a healthy breast. And the potential complications of the surgery can have a negative effect on the patient.

"Tuttle and his coauthors used published data to develop a model for predicting survival rates over 20 years for women diagnosed with stage I or II cancer at age 40, 50 or 60.

According to the existing data, more than 98 percent of women diagnosed with stage I breast cancer will survive at least 10 years, and 90 percent will survive for 20 years. For stage II breast cancer, 77 percent survive for at least 10 years and 58 percent survive at least 20 years.

For all age groups and tumor types in the study, the risk of developing cancer in the opposite breast after diagnosis was less than one percent each year, the authors wrote in the Journal of the National Cancer Institute."

So this study shows that while some women may want an elective double mastectomy, there is no benefit. I was also pleased to see the ten and twenty year survival rates (which are difficult to find) for stage I and II breast cancer. I am moving away from the five year time frame and starting to think about the ten year time frame and longer. And no I didn't even consider a single or double mastectomy.

Saturday, August 16, 2014

Why do they do that?

I have a policy with myself for when to call my back pain doctor. When I get to the point of needing 2-3 breakthrough pain pills to get through the day, its time to make the call for an appointment. I have been at that point for a while and got in to see him yesterday afternoon.

My points of discussion with him were two: My right SI joint is in serious need of having its nerves killed off and my varying total back pain needs to be discussed. We don't always change my pain meds at a single appointment, we often discuss them over a few appointments before making changes.

My right SI joint (which is the long seam joint down the side of your tailbone if you are wondering) has been giving me problems for months. We have had the treatment discussion before but previously we have focused on other pain areas.

Yesterday afternoon, he  had me lie on the exam table and he moved my legs around and pressed on my hip. That hurt. Then he had me lie on my side and he pressed right on the SI joint. That was like a live wire running through me. I had to catch my breath after.

I think he realized how much it hurt and said he would send the nurse in to schedule my treatment. It took a while for me to recover from the amount of pain. I know he had to make sure he knew where the pain was coming from before heated needles to kill the nerves - because you really don't want to kill the wrong nerves.... But, yowza!

October 25 is the date for the treatment... It will be three years from the last one, which was the second one on the same place. These treatments (radiofrequency) can be repeated over and over again and each time the nerves come back, it takes longer and longer and they are weaker and weaker so the pain levels are less and less.

On a side note, my pain management doctor says I can actually take up to 8 break through pain pills a day and he considers 2-3 a day a very low dose. But my rheumatologist tells me that from her point of view, 3 should be the maximum because of convulsions. Its the different perspective from the two doctors that gets damn confusing.

Friday, August 15, 2014

What to do about my boring blog?

My blog has devolved into something just plain boring, for lack of a better word. I will say I do not write for volume, I do not write for search engines or to build twitter followers or anything like that. I blog because it helps me cope with my devolving health. I do try to primarily write about breast cancer and related issues.

But my life has not been about breast cancer recently. Which is a good thing. I do not focus my life on breast cancer now. My life focuses on work, getting ready for craft fairs this fall, and coping with my back and RA issues as well as fibromyalgia pain.I have also upped my volunteer work to a level which is fulfilling.

I think I have gotten through enough of the breast cancer PTSD for now. It will never go away. I do know that. This month marks 33 years since my thyroid cancer diagnosis and that never completely went away.... (The answer to the question of does it ever go away is no.) But it does recede into your mind and make it easier to cope and live.  And allows room in my brain to focus on the rest of my life. And no there is no new me living a new normal. That is all a load of crapola.

So that is where my brain is so that is why my blog is boring. I will continue to blog and I will try to make it less boring.

Thursday, August 14, 2014

A day off

Today I have given myself a day off. Actually, don't tell anyone, but I have a cold. Well its not really a 'cold'. I just don't feel well, run down, tired, but no congestion. And I have been fighting it since Monday night.

Due to being Mrs CIS (Compromised Immune System), I don't bounce back from little germs like I used to. Actually I don't bounce at all...

I just plan on being better for vacation which starts Sunday (and to all you burglars, we have a house sitter). I can't be sick on vacation. That's a rule. I might also not blog very much while we are gone...

But I must be healthy while we are away..

Anyway, I also be home this afternoon while I get a new windshield for the new car. A big crack appeared while I was stuck in traffic Tuesday afternoon. They get a five hour window from 12-5.... I'll be home with my germs. But at least I have a good excuse for sitting around all afternoon.

Cancer people should get an exemption from all the regular crap in life....

Wednesday, August 13, 2014

When diagnosed with cancer, get a puppy

I read a really good book last night. The whole thing. 83 pages in a 5"x 8" book so its a very quick read. 'Survival Lessons' by Alice Hoffman. Yes the famous writer Alice Hoffman.

She had breast cancer 15 years before she wrote the book which came out last year. In the introduction she tells us it is her personal path to healing on her own terms. The book then shares what she learned during the course of her treatment, looking back after all that time. I hope I am as smart then as she is now.

In addition to telling us to get a puppy during treatment, she is full of good advice including 'choose to plan ahead' and 'choose to dream'. These are two very important things we often forget when coping with a cancer diagnosis.

It made me think in a good way. I will return it to the library shortly so others can benefit from it. I might reread it before I return it and I will definitely reread it again in the future.

Tuesday, August 12, 2014

Its a sad day

Robin Williams died from an apparent suicide yesterday. But I smiled after reading some of his most famous quotes. Here are some of my  favorites:

"Goooooooood morning Vietnam! It's 0600 hours. What does the 'O' stand for? O my God, it's early!" - Adrian Cronauer, Good Morning Vietnam (1987)

[Mork picks up an egg] "Hello? Hello? Anybody in there? Little hatchling brothers, you must revolt against your oppressors. You have nothing to lose but your shells."

"You're only given one little spark of madness. You mustn't lose it."

You can read the rest here.

But the sad thing is that he committed suicide after dealing with depression. I too have depression issues as do millions of other Americans. But no one wants to talk about it. Its one of those diseases, like hemorrhoids, which are embarrassing. The problem with embarrassing ailments is people don't want to talk about them. So they do not communicate them to anyone, even a doctor, which can endanger their health.

My depression got worse with my second cancer diagnosis but I probably had it for years before. But damn it, cancer is depressing. And coping with it, for a second time, isn't easy. Treatment was the answer.

I don't know more about Robin Williams' depression story and only know what I hear on the news. His humor always had a bit of an edge. But he did make us all laugh as we listened to him. It is very sad that he is now gone.

"Crying on the inside, laughing on the outside."

Monday, August 11, 2014

A new understanding of cancer

I read both these articles recently and sort of jumbled them around in my brain and thought about them. They make a lot of sense. There is current medical research which is focusing on a new cancer classification system based on their genetic make up and not on which part of the body they are found.

Think about it. We may call it a head cold or the stomach flu, right? But we know they are different and treat them differently. With cancer, its the same thing. Breast cancer and stomach cancer get different treatments - but they are chemotherapy, surgery, and radiation - which are fairly similar. And then doctors wonder why some patient's cancers do not respond to treatment the way other patient's cancers do.

But their genetic make up may very well be the key here.

"In the triple-negative breast tumors, named as such because they lack the three hormone receptors targeted by the most successful therapies, the researchers learned the molecular wiring looked so different from any other breast cancers that they think the disease may warrant a new classification."

There is lots more you can read about this here.

Then Providence Health & Services, which provides care to those in need in the northwestern US, has released a plan to sequence the DNA of cancers - another state of the art leap in cancer diagnosis and treatment.

I call this all progress, in  a good way.

Sunday, August 10, 2014

I didn't blog today

This isn't a real blog post. It is an unpost to say I am not dead or anything but we had house guests, I didn't get enough sleep either Friday or Saturday night, and I am tired. So I am not blogging. Pretend I am writing in invisible ink. I should be back tomorrow.

Saturday, August 9, 2014

Chronic can be a good thing

When I was in cancer treatment, I was told cancer was being treated as a chronic illness instead of a terminal one. We all liked that. It was nice knowing that they didn't expect you to die anytime soon.

Living with a terminal disease is not fun. Your life is counted in weeks and months instead of decades and generations. But living with a chronic disease is not that great either.

We all know we came with an expiration date - life is a terminal occurrence. We are all going to die some day. But with a chronic disease, life just becomes a little (or a lot) less fun.

I have a couple of those chronic conditions that make life less fun. And that's how life goes for me. If you want to learn more about living with chronic ailments, this is a wonderful essay on life with chronic ailments.

And how you wake up each day with hope to be free of pain and and maybe there will be a cure. 

Life with chronic ailments is better than with a terminal one but how much is up for discussion.

Friday, August 8, 2014


What is happiness in life? We don't realy know. Scientists have defined it as:

My version of it is a bit different (and I have long since forgotten all the calculus, trigonometry and higher math I learned in college) and shorter.

I think happiness is defined as contentment, meeting your own expectations and no one else's. In the scientific definition they talk about it as meeting your expectations of yourself. But do not lower your expectations. You need to set your expectations to a level that you can attain. Wow, am I getting philosophical this morning? That is too much to ask.

But I digress. What makes me happy? Well, as you may have guessed my health doesn't make me happy. Happiness for me is getting a feeling of accomplishment in what I do. Sometimes it leads me to stretch myself a bit thin with volunteer work but I like how I feel after I get something done that helps another group of people.

Sometimes I see people who clearly are not happy with their lives. Some times circumstances can be beyond our control - like getting cancer, and sometimes we need help from others - money, therapy, but we are better off if we focus on making lemonade out of our lemons than allow resentment to grow and turn us into crabby nasty people.

What are my expectations in my life? I now know I am not going to be a rocket scientist, a CEO, a Hollywood star, or cure the common cold. But I am  okay with all that. I wouldn't mind finding a cure for cancer but think there are others who are much more qualified.

What do I want out of life? I think I am happy with a little house on a little street where I can live quietly with my husband and garden. I think I am happy in our own little world here. Its only 10 minutes to the damn hospital if I need it.

Thursday, August 7, 2014

Say hello to our new pal - PALB2

PALB2, or PAL for short, is our new friend. She's a newly discovered breast cancer gene who hangs out closest to our old friend BRCA2, or B2. She also hangs with B1 but not as much. But what does PAL do? According to some new research:

"Overall, the researchers found, a PALB2 mutation carrier had a 35 percent chance of developing cancer by age 70. By comparison, women with BRCA1 mutations have a 50 to 70 percent chance of developing breast cancer by that age, and those with BRCA2 have a 40 to 60 percent chance..."

"The breast cancer risk for women younger than 40 with PALB2 mutation was eight to nine times higher than that of the general population. The risk was six to eight times higher among women ages 40 to 60 with these mutations, and five times as high among women older than 60...

"The data also indicated that women with the PALB2 mutations were slightly more likely to have “triple-negative” breast cancer — a form resistant to hormone treatment, more aggressive, and more likely to recur than other subtypes...."
A caution was added:

"“This has to be tailored to the patients, who may have other mutations and varying family risk,” she said. “With no family history, the increase they found is 35 percent. If you have two or more family members with cancer, they found a risk of 58 percent.”"

So PAL may be our friend but we don't want her to hang out with our family as well. 

You can learn more about PAL here and here (NEJM) and here (Genetics Home Reference).

Wednesday, August 6, 2014

Blah, blah blah, blah, blah

Ooohhh.... more information on breast cancer risk!!! Hot damn baby, this must have the clues I need!!!

Nope. Not there.

Here they are:

Hereditary: not me

"Being obese, smoking, drinking alcohol, using birth control pills, lack of exercise, early menstruation, and certain benign breast diseases, have all been associated with an increased risk for breast cancer"

I'll take the fifth here. But I wasn't fat until after breast cancer. And I have always been known to get exercise and have never been a fan of the pill.

And then there is something about how estrogen metabolizes in your body and there is a new fancy test for this. The 2/16 alpha-hydroxyestrone ratio which can be measured in a urine test. And you can balance your ratio by eating more plants.


"Having one or more risk factors for breast cancer doesn't necessarily mean you’ll develop the disease, but being aware of the risk factors may inspire you to take preventive steps. This could have a huge impact on your health."

So, nothing new here. Its just blah, blah blah, blah, blah.

Maybe I'm in a cynical mood this morning.

Tuesday, August 5, 2014

Appointments can mess up everything!

We are going on vacation in a few weeks and looking forward to it. This is an annual trip that has been planned. (And no I am not giving special insight to burglars as we will have a house/cat sitter while we are gone.) As part of our getting organized for this trip, I have longstanding plans to have tea with the house/cat sitter to discuss details of what is the latest food the cat will eat as well as other general information.

We are supposed to have tea (or possibly champagne and paté) at 3pm.

Yesterday I gave up on my back issues and decided living on Tramadol is not the lifestyle I enjoy, and called my back pain doctor for an appointment. The only available appointment in the next month is at 245 on the same day. Wah!!!

So now I need to reschedule our tea/champagne and paté to later in the afternoon. Obviously I can't drink champagne and then go see the doctor.... I know I could have said no but it would mean more time living on tramadol.

This always happens. We are at the mercy of our doctor's and their schedules. I also know that we are also stuck with scheduling around our other appointments. But damn! I hate it when doctor appointments conflict with the fun parts of my life.

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