Whats it worth?

A recent study (of course there was another study - nothing can happen these days without a study) says that cancer costs are spiraling up and turning into a 'cancer cost crisis'. I can see this, medications, treatments, tests, and fun medical adventures (a/k/a procedures) are expensive and getting more so. More people are being diagnosed each year due to better technology and an aging population among other reasons.

As I have discussed before, lots of pharmaceutical companies are getting rich with their huge prices for new prescriptions (because they are recouping their research costs but that is another or several other blog posts). Sometimes doctors also prescribe expensive tests to reassure a patient or to prevent a potential malpractice suit. New medical devices can also be expensive - another MRI machine, that will cost you some big bucks - insert lots of zeros please.

There is a call to reduce testing and help reduce costs. What about a closer look at very expensive chemo treatments which might lengthen a life by only a couple of weeks? Be stricter in requirements for who can receive which tests and when surgery is really needed.

I can see both sides. As a patient which a couple of tiny little cancer diagnoses behind me, I am the first one to jump to the 'holy cr*p is that it again?' state of mind and want/need reassurance that it is nothing. On the other hand, I have had plenty of medical (mis)adventures in my life that I am happy to avoid as many as possible. But how do you draw the line as to what is needed and what isn't?

There are some problems here. It is very difficult to put a standard requirement for the need for a certain test. What I am trying to say is it is not medically correct for an insurance company to dictate when a test is needed or not. That is a medical decision which varies from patient to patient. The one thing I have learned from my medical (mis)adventures is that every patient is different and every cancer is different. So what is right for me, is probably wrong for the next person. What was standard protocol for treatment last year, may not be standard any more.

If it is a financial decision, who is right to make the decision of is it worth it? If my doctor says 'this surgery will save your life', I'm all for it. If the doctor says 'this chemo might make you live (in pain, nauseous, and blotto on morphine) for two more weeks, I would probably opt to skip it.

The only ones who can decide what the worth of a treatment is regardless of its financial cost are the doctor and the patient. However if a drug costs $100,000 and will prolong life for only a couple of weeks, where do we draw the line? Is the insurance company right to refuse to pay it? Or is the pharmaceutical company wrong for overcharging? Are they putting a value on someone's life by charging so much? I don't know what the answers are to all of this and I'm not sure anyone else does either.

Its almost that time of year

Are you ready for the barrage of pink? It is going to be everywhere for 31 days starting on Saturday. Do you remember when October was black and orange for Halloween? Now we have pink everything. (Pink does not go with black and orange - well maybe with each one separately but not really all together.)

I am not looking forward to it. At the nail salon yesterday I paged through a couple of magazines, Self, Family Circle, and one other one whose title escapes my tiny brain, and all were full of pink stuff. There was a two page spread of items which are pinkified and their purchase will help support breast cancer. There were numerous ads for 'pinked' products. There were several articles with breast cancer stories. There was too much pink. I would have preferred articles on pumpkins, trick or treating, Halloween parties and decorations.

So anyway, I have braced myself. Perhaps I won't wear pink for the entire month. I wear pink often as it is one of my favorite colors. But I don't believe in all this pink crap - and crap it is. Everything can be purchased in pink in October now. What does it really do? It is basically a scam. It cons people into purchasing things that they believe are helping a cause when it is really a marketing ploy by many companies to sell more products.

You will notice it is very rare that they tell you how much of your purchase price goes to support breast cancer research or awareness or whatever. And that is the important question to ask. They may say 'this company will donate $25,000 from the purchase of this product during the month of October to breast cancer whatever'. But that means that a tiny percent of your purchase goes to the breast cancer part and when they hit $25,000 they will continue to sell the product but won't donate any more than that amount.

What you want to ask before you purchase anything pink is what portion of my purchase will go to breast cancer whatever. And is there a maximum the company is going to donate. Without knowing those two, I would skip the pink product and buy what you normally do. And if the answer is 10% of the profit from the sale, that is nothing. A $10 item probably wholesales for $5 and of that probably $2 is profit so that means your 10% is $0.20. You are better off sending in $10 directly.

Yes there are some legitimate companies who donate a decent portion of their sales. You can check them out at www.thinkbeforeyoupink.org.  And there are some good products which are worth their pinkification. Two of my favorite kitchen utensils are a Kitchen Aid knife and Kitchen Aid ice cream scoop that have pink handles. They are good quality and I use them regularly. But for 31 days you will need to sift through the pinkification and make your decisions on what you want to buy. Or just skip the pinkification and send a check to breast cancer research. What I really wish I could see is all the money spent on pink products was just sent in for cancer research.

More on what not to say

People with a bad medical diagnosis don't need to hear somethings from others. If you haven't been through the same thing as them, you have no idea what they are coping with. This is one of my pet peeves. If you haven't had cancer, you don't get it.

Now someone else agrees with me. While Dr. Senelick is speaking of people with disabilities, most of what he says he is applicable for anyone who is coping with a bad medical diagnosis.The doctor gave his opinion on these issues and people with disabilities. I can give you my opinion (because I always have one) on them as well:


Greetings - Yes say hello but don't start with 'so how was your latest oncologist/doctor appointment/nasty test?' There is a lot more to me and my life than medical crap and I don't want to discuss it unendingly. I live it enough and I'll tell you if I am ready to talk about it. 

You are so courageous - I am not courageous. I am coping. Courage has nothing to do with this. Sheer will power and guts gets me through this crap. I am not brave. I am not a survivor. I am not fighting a war or battling cancer. I am a person living with cancer.

It could have been worse - What? What would be worse than 'you have cancer'? Well actually the only thing worse is if they say 'you have cancer again'. I've been through that one too. Tell me what's worse than you have a disease that we can treat through some very nasty procedures and protocols but we really don't have a cure.

I know how you feel - so when was your cancer diagnosis that you can compare this to? If you have had cancer and hadn't told me before that's fine. Now we can compare cancer stories. But if you haven't had cancer you have no idea.

Finally, if you don't know what to say acknowledge my health issues and treat me as you normally would. I don't want/need special treatment and well intention but misdelivered kindness. If you really don't know what to say, keep your mouth shut.

A backwards look

It has been 40 years since President Nixon declared a war on cancer. We still don't have a cure but we have a lot of progress. Maybe the president was being a bit unrealistic in his goals but it did start some substantial progress in cancer's treatment and survival rates. But looking back on 40 years of research shows some progress. Let me say that I never did like the term war but I'll use it here.

I have also been reading "The Emperor of all Maladies A Biography of Cancer" which I have not finished (but do recommend). I am about 1/3 of the way through it and have been reading about the centuries of diagnosis and treatment of cancer. It amazes me how early cancer was known to be a killer but also how badly it was mistreated and misdiagnosed.

By 1971 doctors thought they understood cancer. Since then, they have discovered how wrong they were. Cancer is now thought to be 200 different diseases that need to be treated differently. However there have been two significant break throughs:

- The most important is that of genetics based on the decoding of the human genome in 2001.
- The next is the understanding of the lifestyle changes that help reduce cancer rates - these are everything from eating right, quitting smoking, getting exercise.

Next in the war on cancer it is expected that personalized medicine will give us the answer. Also, the prevention of cancer should contribute greatly to solving the puzzle. If we can continue to make lifestyle changes that help prevent cancer in our aging population, more lives will be saved.

But after 40 years of progress we still have over half a million Americans dying of cancer each year. I see some progress here but I also think that overcoming 200 diseases is much more daunting than overcoming only the one disease the war was originally focused on.

Baggage, moving on, and burning bridges

In life, we all collect baggage of all kinds. That's just what makes us human beings. Some kinds of baggage we learn to cope with - that bad break up, being tormented in middle school, etc. Some kinds of baggage we are stuck with - the medical issues that never go away or change our lives forever.

It doesn't matter what kind of baggage it is, we learn to cope and move on with our lives. We adapt and continue to grow. Some things we put behind us and somethings (like that pesky cancer thing) we keep with us and adapt. Some things turn toxic and we may have to bur our proverbial bridges.

Taking the drastic step of burning one's bridges is not always the best thing in life. Is it playing chicken and running away? Or is it taking steps to rid oneself of undesired companions - whether they are people, emotions, or things? I have never been a fan of burning one's bridges. My theory is that if you keep on burning your bridges, you will find you have none left to burn - as there is nothing left in your life.

However sometimes what was once a good thing - maybe a close friend, a solid marriage, or a good job - is no longer that. You and your friend have grown apart. You and your spouse have chosen different paths in life. You made a career change. Whatever it was that made you happy doesn't any more. It stresses you out. It causes you emotional upset. Then it may be time to cut some ties and burn some bridges.

The past four years of my life have changed me for good. Cancer and its treatment has changed me. In May of 2007, I was working full time, spent sometime on line, and didn't have a blog. Then I had that 'bad' mammogram, got laid off from my job (two weeks before my diagnosis), and started to blog. My life is now completely different. I don't work full time and probably never will again - unless by some miracle I find the perfect job that I can do mostly from home. I have had so many medical appointments I can find my way to the hospital with my eyes closed. I am on line. I blog. I am on Facebook. I tweet. I participate in numerous online communities. I am also happier than I have been with the balance of my life (except for the damn doctor appointments and medical crap) than I have been in a long time.

I find a communicate with many people online. If you aren't online with me I probably don't communicate with you very much. Some friends who I used to talk with regularly aren't online so I don't communicate with them as much any more unless one of us makes an effort to get together. I also am not as patient with people about getting together. If it gets to complicated to schedule, I am just not going to bother. I have learned to allocate my physical resources on the things that are important. I don't wait for people who are late (being late is just plain rude - it says 'you are not important to me' to the person you are late in meeting). I don't play numerous rounds of phone tag with anyone.

The one person I communicate with off line is my husband. He never checks his home email. He never doesn't tweet. He isn't on Facebook or any online community. But that's okay because we live in the same house together. I do communicate with family members by phone and rarely online as well.I also have a couple friends who make the effort to pick up the phone and call and get together with periodically.

But all those other people who haven't moved on line with me, I probably have moved on from. Is it me keeping up with technology vs. them not? Or am I being selfish in not keeping up with them off line. How do you know what's going on with my life if you don't make an effort, read my blog, go on Facebook? As my health went 'south' as they say, I moved online to communicate about my medical issues. It is my way of communicating now.

Am I supposed to call everyone regularly and fill them in on my life and medical issues? Or why should I bother? I don't want to talk about my medical issues all the time which is why I may not call. I don't want to hear day after day 'so how are you feeling', 'how was your doctor appointment', 'how is your back/shoulder/arm/elbow/knee/ankle/incision doing'. They may be well intentioned but I am not going to talk about it again and again.

Sometimes what was once a good thing has become baggage and you need to move on. Its how you handle the moving on - can you adapt or do you need to be a bit more drastic and burn a few bridges as you go?

Scary numbers

[This is not a political post.] I read this article this morning about the state of health care in Texas. I find the numbers appalling. 24.6% of Texans do not have health insurance and this number has grown by 35% in the past decade.

As a result of this low insurance rate, people die of treatable or vaccine preventable diseases, people with pre-existing conditions cannot afford health insurance, and people are not getting regular screenings such as mammograms and colonoscopies. The numbers look like health statistics from a third world country but are instead from a state with some of the best medical centers in the country.

If you are unsure of the importance of change here are some stories from the article for you from Texas:


- a yoga instructor who makes $20,000/year is $30,000 in medical bill debt because she can't afford insurance as she has Parkinsons - a pre-existing condition.


- a 16 year old boy died from a tumor in his chest that was found too late.


- a 15 month old died from dehydration due to diarrhea because his family waited to bring him to the doctor because they thought they couldn't afford it.


This is an example of why the health care system in this country needs to change. As I said I am not making a political statement and frankly I don't care what people think of Obamacare, Governor Perry's presidential run, or the state of the economy. What I do care about is that people are dying unnecessarily or are horribly in debt trying to get basic medical care.

I am not sure anyone has it right yet but change is clearly needed. I am personally for health care reform and what some call Obamacare as it is change. If anyone has a solution to prevent people from dying unnecessarily, I am in favor of it. I know this is a sensitive subject for many and people resent government interference in their lives in being forced to buy health insurance. I do not see it as the government telling me what to do (I am a rule-breaker/rebel by nature). I look at it the other way, it is the government stepping in to do something good and making health insurance more accessible and affordable for all.

Tell me more!

This morning I was bouncing around the internet looking for worthy blog topics and came across a tiny article which doesn't tell me enough.... (Do you think I come up with this stuff by myself? I always have to search for ideas. Sometimes I find things to write about and then forget about them before I start writing but today I went straight from the article to my blog before my brain loses the content I want to write about and here I am.)

First I found this TINY article that tells me that the FDA has approved a drug to treat bone loss in cancer patients - specifically women who are being treated with an aromatase inhibitor after breast cancer and men with non-metastatic prostate cancer receiving hormone therapy. Obviously I am not in the second group but the first. And I am having bone loss issues. I will talk to my doctor about this one after my next bone scan in the spring. Basically my bone density is down and in addition to being on an AI, I have a strong family history of osteoporosis. I have already talked to my doctor about next steps in bone density if it continues to go down.

But I digress this tiny article didn't not tell me enough and it referred me to the Prolia website which tells me nothing but offers a lot of scary side effects. So I did a little more research with Dr. Google which led me to a little more information on WebMD that tells me it is an injection every six months and has common side effects of low blood calcium, joint pain, and back pain, in case I didn't have enough of those already. But that is always another tiny article. I need to talk to my oncologist to get the real information.