Friday, September 30, 2011

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.

Thursday, September 29, 2011

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.

Wednesday, September 28, 2011

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.

Tuesday, September 27, 2011

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.

Monday, September 26, 2011

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?

Sunday, September 25, 2011

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.

Saturday, September 24, 2011

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.

Friday, September 23, 2011

Taking care of ourselves

Look, another article on increasing health insurance costs! Wowie kazowie! Health insurance rates are going up! Maybe a little less than in the past but still they are going up - which is the wrong direction. Woop de doo! I want an article saying health insurance rates are going down. But we know that isn't going to happen anytime soon. Anyway, its just another article in the long line of articles on rising health care costs to which we are now very accustomed and basically expect them.

This one includes a video from an insurance company big wig as he tries to justify the increasing rates in another 'if-we-can't-kill-them-confuse-them' explanation but he does make some valid points.

One of the biggest reasons for increasing health care costs besides an aging population and technology and medical advances is that we, as a population, are not taking as good care of ourselves. We are fat and lazy and as a result have all sorts of ailments as a result. While I am not a fan of insurance rate increases and our health system overall, I think he has a few valid points. We are our own biggest supporters and our own worst enemies. We owe it to ourselves to get off our butts, eat right, get exercise, brush our teeth, and all that good stuff.

The increase in health ailments, such as cancer, can be attributed to increasing industrialization, longer lives, and pollution among other causes. But they also can be attributed to the fact that as an industrialized nation we have all sorts of 'modern improvements' that made life easier - no more trips to the outhouse and ringing out the clothes by hand - that have made us lazier and lazier. Packaged, prepared, and fast food have made life easier but have increased the chemicals and fat grams we consume without having to get out of our cars and have pretty much eliminated the need for taste buds.

We owe it to ourselves to make the effort to take better care of ourselves - which is the one part of the health insurance mess we can control. We might feel better as well.

Thursday, September 22, 2011

Doctors out of context

I expect to see my doctor in a nice little exam room where I am the patient and they are the doctor. When I see the out of context, meaning out of an exam room, I am little put off. First of all, do they even recognize me and know my name when they don't have my file in their hand? They have hundreds of patients and I am not sure my newer doctors do know me in the blur of the patient roster without a little prompt.

But I always recognize my doctors. A few weeks ago I was at my PCP's nurse practitioner about my shoulder. When I walked into the waiting room, my PCP was walking out. I said hello and she said hello back. but I'm not sure she knew who I was. I was just a little startled to have someone coming out the door I was going in simultaneously as it was an 'excuse me' situation.

When I was looking for a new PCP last year, there is one doctor I ruled out automatically. She is the sister in law of a friend of mine. I have been to parties with her. I have always thought of her husband as my friend's hunky older brother. I don't think I want a doctor who I think of more as a friend. I know some people are friends with their doctors. Not me.

I belong to a monthly breast cancer support group at the hospital where I am treated. They often have a speaker come in - usually a physician or nutritionist, etc. But next month the speaker is my oncologist who is coming to talk about women's health issues. I just saw her a couple of weeks ago and am not sure I want to be in a discussion group situation with her. I can never keep my mouth shut in the first place and I want my conversations with her to be more one on one. I am not sure I feel comfortable enough to attend.

Then later in October is a free seminar at the hospital on the 'Promising Future of Cancer Care'. I am attending for several reasons - its free, the keynote speaker is Dr. Susan Love (and I have always wanted to hear more from her), they will have hors d'oeuvres after (and snacks are always good), and they will have speakers on several types of cancer - breast, lung, colorectal, head and neck, and prostate - and might even have some promising news for those of us in the two cancer category, and I always want to hear good news in regard to cancer care. If they can offer me more in the future, I am happy.

But the speakers are their oncologists. So I assume my oncologist will be there and possibly some of my other doctors. I think I can handle this as it will be a group situation.

I just always feel weird when I see my doctors out of context.

Wednesday, September 21, 2011

I did not fall off the planet.

I know I disappeared with no notice. I'm sorry. I usually blog daily but we went on vacation and there was minimal internet. We were in Iceland which was wonderful. But I didn't bring my laptop or phone because my laptop is heavy and my phone would have been very expensive. I did bring my new color nook (which is an awesome new toy) but I had problems updating and I forgot the power cord. (If you want an awesome new toy go get a color nook from B&N for $250 and you can get online - to an extent - and read books.

But I digress. We had a great time. I had a significant birthday which means it ends in a 0. I definitely recommend Iceland for a relaxing vacation.

However my health and travel are not a good combination. My carry on luggage consists of a pharmacy of prescription pills and pain patches. It doesn't leave room for much else. Then there is my back which does not like standing in line or sitting in cramped plane or bus or taxi (with no suspension) seats. When you travel there is lots of these activities which means my back hurt.

Also there is my lovely lymphedema arm which is usually just annoying. Air travel is very bad for lymphedema. I met a woman recently who had no lymphedema problems for years and then she went on vacation and her arm blew up. 19 years later she still has to wear a sleeve daily and tape her arm every night. My arm is usually under control but I was careful to wear my sleeve on the plane there. I also made a point not to carry much with that arm (but my other arm still has remnants of tennis elbow so I really couldn't carry much at all). I even got a shoulder pack as a purse so my husband could carry my purse and not feel like a dork.

The first day we were there we went on a half day city tour which was a great idea. Until I got off the bus and was looking at my camera and didn't see the curb and fell flat on my face (in front of people that I'll never see again so I am only minorly mortified). I did scrape my palm a tiny bit but it caused my shoulder that I injured this summer to become extremely painful again. I used lots of ice on this trip.

On our third day of three trip I completely overdid things. We went into Reykjavik and went shopping and looking at the sites. We decided to walk back to our hotel because it was nice out and we could see more. But I was exhausted and had to lie down for a few hours with ice to recover.

For the rest of the trip, I was very careful about carrying things and wore my sleeve and gauntlet (to compress my hand) on the flight home. One of the big activities in Iceland is hot tubs and thermal pools. However lymphedema should not be exposed to a lot of hot water. I wore a sleeve while in the water, avoided the really hot ones, and kept my arm out of the hot water as much as I could. Today I am home with minor back and shoulder pain. I am going to go to the gym to help remove all the fatty foods that we ate from my body.

If I had been healthier we might have tried glacier walking and hiking but that was not to be. So travel and post cancer bodies can be compatible but with limitations. I have always wanted to go to Iceland and I am glad to say that I did. I did nt let my health prevent me from going. But now I am back and life will resume.

No doctor appointments this week but two next week and one back treatment and another doctor the week after. Just something to look forward to.

Sunday, September 18, 2011

If I understood technology...

If I understood technology... I could read my own medical tests and not need an interpreting doctor... I could figure out the capabilities of my cell phone without asking a teenager. I could figure out my nook and why it wouldn't let me log into my blog for days...and then all of a sudden it did. But could I then understand why the cat likes one kind of food today but not yesterday or tomorrow? Or why I manage to develop new pain areas? And keep hurting? I just have a goal only to go to doctors yearly.

Friday, September 16, 2011

Prescription drug interactions

When I was in chemo, I was told to tell my doctors about everything I was taking - over the counter medications, other prescriptions, and any vitamins and supplements. I thought they wanted to know for two reasons - one to have an idea of the bigger picture of our health and to make sure we were taking vitamins. Then today I found this article that says fish oil can block some chemotherapy drugs.

I know there are lots of potential drug interactions out there. But I think they are often thought of between two different prescription drugs as opposed to interactions with OTC medications, vitamins or supplements. I can tell you from personal experience there are often interactions with everything.  If you aren't sure, take a look at this list of interactions with St John's Wort.

Between my lack of thyroid, allergy to Benadryl, or more correctly some antihistamine in it, and all my other medications, when I get a cold I ask the pharmacist what I can take. They have to think about this for a bit. No aspirin products because I am on anti-inflammatories - this means no ibuprofen, etc. No antihistamines because of my allergies. Nothing that will interfere with my thyroid medication which has all sorts of interactions. Nothing that has any kind of warning 'do not take if you have thyroid problems'. This means if I have a cough, I can only take the basic Robitussin - none of the ones for all day use or with decongestants too. If I have a headache, either I suck it up (and whine) and take a tylenol. Also, with my thyroid medication that I have to take by itself on an empty stomach one hour before eating or four hours after eating or taking any other medications, this gets complicated.

My husband had a cold recently. I woke up and he was rummaging  through the medicine cabinet looking for something. He then went down stairs and moped in front of the TV. When I came down I asked him what was wrong and did he take any cold medicine. The answer was he couldn't find any. Because we don't have any because of my issues. I made a special trip to Walgreens to pick up some heavy duty cold medicines for him. He doesn't have the interactions issues that I do.

When we are traveling I pack our bag of prescriptions and then consider what else to take. Do we need tums? Probably. Do we need tylenol? Maybe. Do we need anything else? I hope not.

And I'm allergic to penicillins and codeine. When I need a prescription, I am a pharmacists nightmare.

Thursday, September 15, 2011

Oh, let's put the patient in charge of communication

People coping with cancer, or any serious medical diagnosis, need to be the ones in charge of their communication. Some people want to talk about it, some people don't, some people need space from time to time. Whatever their choice is, let them make it.

My blog here is my  way of coping and talking. I get to talk about what I want when I want. If I don't feel like talking about my latest oncologist appointment, I just don't write about it (even if it was fine).  Sometimes its not that there is nothing newsworthy but it also can be we just don't feel like rehashing the latest bump in the medical roller coaster.

If you know someone dealing with some fun medical diagnosis, it is not okay to call them  up and grill them on what is going on with their health regularly. You may think you are just calling to ask how their latest appointment went but the ball is in the patient's court to talk about the details or not. If the patient says it went fine and changes the subject, let it lie. Also, if they have a doctor appointment or some medical adventure, it is okay to call them and see how it went once. But it is not okay to call for daily updates on how they are feeling.

Sometimes every conversation becomes a rehashing and another trip on the medical roller coaster that we just want to pretend didn't happen/forget about.

I have friends that when they hear about a little medical adventure and they then call daily after to see how I am doing until I finally say its healed/done with/whatever. It makes me just switch to the 'its healed' even when it isn't just so I stop having to answer the questions. I don't need that many phone calls. It makes me not want to talk about things. It makes me feel nagged sometimes.

If a patient doesn't want to talk about something, they may say they don't or they may politely change the subject. Take the hint and let the topic go. However on the other hand, if they clearly do want to talk about things, it is wrong to shut them off, or to tell them they'll be fine because your cousin's neighbor's hair dresser's dog walker's uncle survived cancer 40 years ago and was fine until he was hit by a truck.

Let the patient be in control. Communication is one of the few things on the cancer roller coaster they can control so let them.

Wednesday, September 14, 2011

The elusive appointment

Today I have a goal - I always need a goal, it makes me feel like I have a purpose, maybe even a use in life. But I digress, my goal is to make an appointment for my next back treatment. How difficult is this? Apparently it is very difficult.

On August 29, I saw my back pain doctor because I was having lots of pain in my back and hips. He told me all my back treatments had worn off and I needed to start them all over again. He fit me in for an injection in my bad hip on the 31st and told me to call his office to schedule a radiofrequency denervation (where they stick needles in to joints and use heat/electricity/or something along those lines to kill off the nerves). It is not a fun event and I am not looking forward to it but it will get rid of the pain.

On September 1, I called his office and left a message to get it scheduled. When you call, you get 'press 1 to refill a prescription, press 2 to schedule an appointment, or press 3 to speak to a member of the office staff'. If you press 1, you get a recording to leave your information and your prescription is (usually) magically refilled. If you press 2, they send you to the hospital scheduling office where you can only schedule regular appointments. If you press 3, you get to leave a message for the office staff and they promise to call you back in 48 hours. I pressed 3 and left a message and asked them to call my cell phone to schedule this. I know its not going to be scheduled soon. They are usually scheduled about a month out which is why I want to get it scheduled NOW and not wait a month to get it scheduled and the wait a month to get the treatment.

Then on September 7, I called back and left a message again and asked them to call my cell phone. Some one actually called me back and said that they were backed up in scheduling treatments because one of their doctors went out on an emergency leave but a nurse should call me in the next few days to schedule it.

Yesterday while I was at work, I called and checked my home voice mail and there were no messages. A little while later I decided to call again to see if I could get this scheduled and left a message asking them to call my cell phone to schedule this. When I got home after 5 last night, there was a message on my home phone asking me to call and ask to speak to the scheduling nurse to schedule the treatment. That message was left in that little interval from when I called to check messages and when I called the office to leave a message. I called back again and left a message repeating my request that they call my cell phone.

Let's see if they call today - on my cell phone which I will have with me all day or on my home phone and I won't be home until after 5 again. If I call them, I'll be able to leave yet another message which I may do anyway.

I know they aren't trying to be difficult but it is very frustrating from the patients point of view. The pain management center also only deals with people who are in pain which makes them cranky.

But I do have a goal today - I will make this appointment. Just call me the not so patient patient.

Tuesday, September 13, 2011

A good change

In 2009, I believe, a law went into effect in Massachusetts prohibiting drug and medical device companies from paying doctors to promote their products. I think a stricter federal law which will be along the same line is coming. Now that we have some data, the numbers are dropping significantly.

I am all for this. While I do believe everyone should be allowed to earn extra money in anyway they (legally) can, sometimes we need to put some reins on what people are doing. If a doctor is making significant income from a drug or medical device company, their loyalties are clearly to their richest employer. So are they then a doctor or are they a professional promoter?

I want a doctor who is focused on treating patients impartially with what is best for the patient in mind. Not with how they, the doctor and his pockets, will benefit the most.  If a doctor wants to work for the pharmaceutical companies and promote their products because they get paid better, are sick of treating patients, or whatever, then they should consider themselves a professional promoter and not a doctor.

I also like to see that doctor's employers are making it easy for the doctors too. They are incorporating these restrictions into their employees requirements. I realize that until the federal law kicks in, in 2012 or 2013 (I think), the drug and medical device companies are getting doctors as speakers from other states. But once the law does kick in, they will need to change how they promote their drugs.

My background is marketing so I can understand this. By hiring the doctors to speak about their products, they are hiring the decision makers to influence their peers from a medical point of view, instead of just being a sales pitch from another corporation. It gives a lot more credibility to their products to have a peer stand up and say 'it works very well'. Now they will need to find another way to promote their products. Millions of television ads promoting the medications to the general public really aren't effective as they raise awareness of a product's name but the patient can only ask their doctor about it, they can't go buy it themselves. I see a real restructuring of their promotional programs as a result.

But as a patient, I am very happy about all this change. I see it as just another step of change in the bigger healthcare reform where the patient's improved care is more of a focus than deep pockets by doctors, hospitals, medical centers, insurance companies, and medical device and drug manufacturers. The goal is to have the patient win in the end - which makes it a good change.

Monday, September 12, 2011

Overreactions

How do you draw the line between overeactions, paranoia and hysteria? Think Salem Witch Trials if you aren't sure. We are all so quick to climb on the bandwagon, fanned by the flames the media, twitter, Facebook, or whatever has created. The desire to know more, as soon as possible, creates a kind of hysteria or mania to learn more and now. Why do you think flash mobs are possible? The spontaneity and the desire to be part of the action fuels this kind of mania.

One person's over reaction, leads to another, and another, and another. One person's freaking out, leads to others either to compensate for or as a reaction to their over reaction and things start to spiral.

We also do this on a smaller scale - in other words, we make mountains out of mole hills, or Everest out of mountains, even. We take the little things in life and blow them completely out of perspective. No a piece of ice is not going to fall out of an airplane the second we take a step outside. If we take a ride on a motorcycle, we are not going to die. If we fly in an airplane, it is not going to crash. If we cross a street, we are not going to get hit by a bus. If we go to the doctor, they are not going to tell us bad things. We end up letting these little paranoia's get out of control and take the enjoyment out of life.

Part of coping with life's ups and downs is learning how not to overreact to the little things. With cancer, you get hit in the face with a nasty diagnosis and continue on the life long roller coaster, facing the ups and downs and learning to cope so we don't blow things out of proportion. Then you learn to deal with the little things in life that matter in a calmer manner. Cancer treatment may leave bald, fat, and scarred but you are still alive which was the goal. Or would you prefer the other option?

A little bit of over reaction can be helpful when it allows you to vent your emotions and frustrations. There is nothing wrong with going home and crying, screaming, throwing things across the room, or chopping up firewood to relieve some of the stress. But then your reactions need to get in control so you don't continue a life that is running crazily amok, stressed out at all the little things for no reason. It may take some work, or even some therapy, to learn to stop making mountains out of mole hills, but its called balance. But balance is what leads us to a happier life.

Sunday, September 11, 2011

Trauma

When the worst happens, we have to go through the process of denial, arguing, etc to finally end up at acceptance. This is a given. It is a process to get there. But its how we cope and live our lives through the process that is how we will thrive again.

There are those of us who, when faced with disaster of whatever kind, are quick to become Chicken Little and say the sky is falling. They run around causing all sorts of stress, media hype happens, and the stress impacts others. More people become unsettled and lose their coping skills. People are running for the hills and living in fear. They are not living their lives and enjoying it.

Then there are the ones who try to pretend it didn't happen. They go about their lives ignoring what is going on around them. It didn't happen to them is their train of thought. But it really did. They are in denial. They ignore they need to change the way they live and resist any efforts to make them change either.

There are also those who get past the shock and trauma and live their lives to the fullest but also adapt to life after trauma. These are the people who thrive. They enjoy life, adapt, and go on.When we have trauma in our life, we need to learn to adapt how we live, grow a bit, and keep thriving.

What is this trauma? It could be cancer. It could be the events of September 11, 2001. It could be numerous other things including fire, natural disasters, and much much more.

As I look back on how life has changed in this country in the past ten years, I can also say my life has changed since May 2007 when I had my breast cancer diagnosis. These have taught me we have to adapt to live - sort of the Darwin theory of evolution in a smaller scale. Now we accept that there are cameras in many public places, we cant take liquids on airplanes, we take our shoes off at airport security, and more. After two cancers, I accept that I can't live life as I have in the past. My health is not the same and it will never be. This is not just from cancer and treatment but still I have to adapt and move on. I can't wallow in self pity and hide in a cave. I needed to adapt so I can thrive.

As a country we have adapted and we thrive as well.

Saturday, September 10, 2011

The importance of knowledge

Why should you be an educated patient? Everyone tells you to go find out about your ailment. They tell you to look on line (but not too much and beware of Dr. Google) and find out what you have so you can ask your doctor the right questions. And where does that get you? Often on information overload to say the least, or with a queasy feeling in the put of your stomach as you try to figure out what it all means.

But what if you didn't look things up and do you own research and blindly listened to your doctors, ignoring your gut? Most of the time, you are fine because the doctors are smart, educated, went to medical school, and your ailment isn't that complicated.

But those times where you have a complicate ailment with a difficult diagnosis and poor prognosis? How important is your knowledge then? It can be very important. It can lead you to ask the better questions, bring more information to your doctor, and could even save your life.

Here is the story of Marci who died of brain cancer. But she was proactive and listened to her gut and found a better doctor who gave her the right diagnosis and therefore the right treatment. She also then did what she wanted to do in the remaining years of her life. This is what knowledge can do for you and why it can be so important.

Friday, September 9, 2011

I don't recall

I don't remember. I must have forgotten. Can you tell me again? I'm sorry, I don't recall that.

Yesterday while at work, I realized that there was yet another thing I couldn't recall. Or to put it bluntly, something else I forgot. I then started thinking about how much I couldn't remember. I realized that there was a lot I couldn't remember - yes I could remember that I couldn't remember.

My desk is a pile of post it notes of things to do. Every day when I get to work, I create a new to do list so I remember what I meant to do. Also I do get a tiny bit of satisfaction in checking completed items off the list. Then I started to think of reasons that I couldn't remember things.
  • I am getting older. Its none of your business how old I am but my point is we aren't getting younger, we are getting older. Old people are allowed to forget things. I am not old. I am getting older. There is a difference. But it causes forgetfulness.
  • I have chemo brain. I have been using that excuse for a while. Maybe its even true.
  • Menopause causes memory lapses. I believe that it is considered to cause forgetfulness. I have chemopause or chemotherapy induced menopause which is the same thing. Or maybe twice as bad.
  • I take multiple prescriptions daily. Pain meds can cause forgetfulness. 
  • Dieting causes forgetfulness.
  • Volunteer work causes forgetfulness.
  • Cooking shows on TV cause forgetfulness.
  • Daily crossword puzzles cause forgetfulness.
  • Too much time on Facebook causes forgetfulness.
  • Going to the gym causes forgetfulness
  • Red wine causes forgetfulness
  • Ice cream causes forgetfulness.
  • An unfulfilled passion for fried clams causes forgetfulness.
  • A need to go to the beach year round causes forgetfulness.
  • Singing along to the radio in the car while no one is around  causes forgetfulness.
  • Too many doctor appointments causes forgetfulness.
  • Gardening causes forgetfulness. (Damn I have to plant the plants I bought last weekend!)
  • Knitting and crocheting cause forgetfulness.
  • Bad backs cause forgetfulness.
  • Cancer causes forgetfulness.
  • Being married causes forgetfulness.
  • Owning a pet causes forgetfulness.
Or you can just say I am a space shot who goes through a lot of post-its. Maybe I should buy stock in Post-Its.

Thursday, September 8, 2011

Creatively coping

Those of us with cancer learn to creatively cope with our ailments. I took up knitting and crocheting after being told by a friend that I needed a hobby during chemo. I have made more scarves but have not progressed to anything more complicated but not for the lack of trying. Other people are much more talented than I. One of them is an online friend, Ria Vanden Eynde, an artist with a blog and a website and now an art show in Florida.


I 'met' Ria a few years ago after she was looking to find people who had the same cancers as she did - thyroid and breast cancer. She lives in Belgium so I have never actually met her. We have communicated online through online communities, our blogs and Facebook. I find her work intriguing. She was diagnosed 9 months apart so had a double whammy of a cancer diagnosis. I have met a few people with thyroid cancer over the years and many women with breast cancer. But she is the only person I know who has had the same two cancers as me. We may be small in number but we are mighty!

If I was in Florida I would try to go to her show which opens today. She has found a creative outlet to express her coping with two cancers. Now she is helping others with her art. At the show, she will donate $40 for each print she sells to My Hope Chest which is a non profit helping uninsured women with the costs of reconstruction surgery.

She is to be applauded for taking this step to help others and give back. It is this kind of effort to take ones traumas and turn them into something that helps others that is important. More people should do this. If you are any where near St Petersburg, please stop by the eve-N-odd gallery and check out the art and maybe buy a print so you can help Ria help others.

Wednesday, September 7, 2011

Brains are required

I am irked by stupid people. Or by people who don't understand that they are stupid. Brains are required in life. Yesterday there was an attempted jewelry store robbery near the gym I go to. In fact, I had to go around three road blocks to get the last mile to the gym. That was annoying but no where near as annoying as the woman I met later.


Basically there was a shootout at the robbery a block from the gym I go to which ended up with an injured (non-life threatening) police officer, a more seriously injured suspect, and two or three missing armed accomplices so there were many police officers around. There was this woman at the gym who was loudly complaining about road blocks and so many police with guns. She didn't understand why they had to be there and were blocking traffic which inconvenienced her. She said the robbers probably got nothing and they shouldn't waste their time with them. Instead they should go after the bankers who have broken all the laws and have all the money but never get caught. She was also complaining loudly enough that you could hear her all across the gym. I failed to understand her logic. There were armed people they couldn't find who didn't hesitate to shot at police.


After we exhausted that topic (simply by ignoring her for a bit), she contributead to a conversation I was having with another woman about our respective health ailments (breast cancer, lymphedema, back pain) and the benefits of medical massage to relieve pain. She said we should go to her doctor and her masseuse to get our health issues taken care of. Her doctor had done surgery on her back and she was much better so therefore it should help us. Um, I was told there is no surgery to correct my back pain and my back is different than her back.



I found her to be insensitive and rude. I don't think she realized how she comes across and that she wasn't using her brain. Her comments about the robbery were a bit out of whack. If there are armed criminals they can't find, I would prefer that they focus on catching them. Also, her diatribe (no other word for it) on back surgery benefits bordered on very rude. She was very insistent that she was in the right. And was loud and abrupt.


If I see her at the gym again I will make sure my MP3 player is turned up loud so I can't hear her and just nod in her direction.




Tuesday, September 6, 2011

A novel idea

What if pharmaceutical companies focused on developing successful drugs instead of just focusing on the number which actually get into development? Any good business plan wants you to focus on the end success as a criteria for success.


Astra Zeneca has changed the way they do business. They are now focusing on the number of drugs that actually gain approval and can be sold. They are doing this by consolidating their research and by getting feedback from insurance companies which want to reimburse doctors and hospitals for things that improve the 'standard of care'.  These are items which help reduce complications and the need for additional care.


I am actually some what amazed that an industry which claims their research and development costs are so high and force them to charge such high prices have only been looking at the number of drugs which are developed. But I am pleased to see that this is change in an industry which has contributed their share to high healthcare costs. I hope that other pharmaceutical, medical device, and other health care companies, also start focusing on the end result and look at how their research is structured.

Monday, September 5, 2011

A good explanation

This sounds like a math lesson, or worse a statistics lesson. But what it really is a good, clear, understandable explanation of risk reduction and how to interpret it and what it really means. In other words, what it says without coming out and saying it is that they are trying, once again, to confuse us. Yes that evil 'them/they' which are the conspiracies against all of us, are at it again.

But really, it does help explain things and uses the example of the chocolate study that was announced recently that said 39% risk reduction for heart attacks if you eat chocolate. This is how they explain it:

"The study found that the combined risk of heart attack and stroke for those who ate the most chocolate was 39 percent lower than those who ate the least. That’s the relative risk reduction - what’s the absolute risk reduction?

For those who ate the most chocolate, researchers documented 2.72 cases of heart attack or stroke per 1,000 people per year, or .272 percent - the modified risk. For those who ate the least, there were 1.44 cases per 1,000 people per year, or .144 percent - the starting risk.

Subtract those two and you get .128 percent. (That’s actually nearly 50 percent lower than .272 percent, but researchers made adjustments for other risk factors like blood pressure to get to the relative risk reduction number of 39 percent).

In other words, there are two ways to look at these results: Eating chocolate decreases your combined risk of heart disease and stroke by 39 percent, or it decreases your risk from about .272 percent per year to .144 percent (before adjusting for other risk factors). That’s a pretty small reduction."

So in other words, when ever you hear that something reduces your risk by a certain amount, you need to ask what the risk was without the reduction and what is the real difference in the rate of diagnosis.

Sunday, September 4, 2011

Thyroid cancer awareness

October may be pinktobered breast cancer awareness month but there are 11 other months in the year and every one of them is awareness month for another type of cancer. September is thyroid cancer awareness month (and maybe prostate cancer but since I didn't have that, I am not sure). Thyroid cancer is actually one of the few cancers which is increasing in diagnoses and deaths as opposed to many others which are decreasing.

When I had thyroid cancer 1981 (30 years - yippee), there were about 10,000 cases each year in the US. Now there are over 30,000 cases each year. (To compare there are about 200,000 cases of breast cancer in the US each year.) The reason for the increase not really known but there are several theories - increased exposure to radiation and chemicals and better detection and diagnosis.

There are several types of thyroid cancer. Papillary, follicular, medullary, and anaplastic are the big ones. Papillary and follicular are the most common. Anaplastic is the most deadly - any anaplastic diagnosis is automatically stage IV. I had both papillary and follicular.

The standard treatment for thyroid cancer is to surgically remove the bulk of the tumor and most of the thyroid. It is impossible to surgically remove the entire thyroid because of the neighborhood it is in - right next to those important things like jugular, esophagus, spinal column, etc - so then they usually dissolve the remaining portion of your thyroid with radioactive iodine. Your thyroid tissue absorbs iodine and the radiation will kill it off. Chemotherapy is usually not needed unless it has spread elsewhere in your body.

Standard follow up for treatment is replacement thyroid hormone for life, neck ultrasounds every five years, and sometimes full body scans with radioactive iodine to look for metastases. Back when I was diagnosed, there were no ultrasounds so I just went to an endocrinologist for about 10-15 years until she retired. Then I just went to my regular doctor. Now I go to an endocrinologist and my primary care and my oncologist (and a million other doctors).

I hope I have educated everyone about this growing cancer. You will notice I didn't link to any websites because I know all this because it has been my life. But here are some references where you can check and see if I messed up.

Saturday, September 3, 2011

Roller coasters

I used to like roller coasters. In fact once I went on a roller coaster vacation where we rode 21 roller coasters in three parks in one week. But the cancer/health roller coaster is not the same thing by any stretch of the imagination.
This week I have been riding up and down the health roller coaster. First I feel that I am turning into a hypochondriac with all these doctor appointments. However I feel I have real health issues (but I'm sure all hypochondriacs think the same thing). Monday I went to the back pain doctor and found that I am back to square one with back pain and have to go through the whole sequence of treatments again. And this will repeat periodically through the rest of my life. Gee how wonderful. Then on Tuesday I went to my primary care's office about my shoulder which has gone backwards instead of healing. I think the nurse practitioner thinks I am a whiner or hypochondriac but it does hurt and my biggest concern that its lymphedema shoulder and longer term complications as opposed to just sucking it up and ignoring it. But I don't feel I get that luxury much any more.
Next week I see my dermatologist for my annual skin check. I am not concerned about this. I get my skin checked annually as a well-being kind of thing. I don't have any concerns. Then the following week I see my oncologist. Oncologists always cause the jitters just because they are oncologists. The whole purpose of these two trips is for the doctors to say 'you are fine' and not give me any more follow up visits. Ha, I'm waiting. I know I'll go back to the oncologist in 4-6 months because I am on Femara for another year and a half.
The cancer/health roller coaster is a pain in the neck. Every doctor appointment is another hill. Sometimes its a little bitty one and sometimes its the big 'screamer' with a few twists and turn after. Everyone has a kiddie 'health' roller coaster - the one that has four year olds screaming. But when you add cancer or something else 'nasty' you end up instantly at the new steel roller coaster that has never ending hills and valleys and flips you upside down. And you can't get off.

Friday, September 2, 2011

Is cancer a medical condition?

I have gone back and forth on this in my mind several times. Is cancer a medical condition? When I was in treatment, I was happy to learn cancer is now treated as a chronic condition as opposed to a terminal one. That is a bit positive. Well, anything is more positive than terminal. But then is cancer a medical condition? I'm not sure I like having a medical condition (well I probably have several but I'm only talking about the cancer one here.)

Wikipedia defines 'medical condition' as:

'A medical condition is a broad term that includes all diseases and disorders, but can also include injuries and normal health situations, such as pregnancy, that might affect a person's health, benefit from medical assistance, or have implications for medical treatments. While the term medical condition generally includes mental illnesses, in some contexts the term is used specifically to denote any illness, injury, or disease except for mental illnesses. The Diagnostic and Statistical Manual of Mental Disorders (DSM), the widely used psychiatric manual that defines all mental disorders, uses the term general medical condition to refer to all diseases, illnesses, and injuries except for mental disorders.[9] This usage is also commonly seen in the psychiatric literature. Some health insurance policies also define a medical condition as any illness, injury, or disease except for psychiatric illnesses.[10]

As it is more value-neutral than terms like disease, the term medical condition is sometimes preferred by people with health issues that they do not consider to be deleterious, such as pregnancy. On the other hand, by emphasizing the medical nature of the condition, this term is sometimes rejected, such as by proponents of the autism rights movement.

The term medical condition is used as a synonym for medical state, where it describes a patient's current state, as seen from a medical standpoint. This usage is seen in statements that describe a patient as being "in critical condition", for example.'

As noted in the last paragraph, critical condition, or stable condition, but a cancer condition? Is that my current state? I don't know if I like that. However cancer is something that might affect a person's health, benefit from medical assistance or have implications for medical treatments. So maybe it fits in that context.

But having a medical condition that is not going to go away anytime soon isn't a comfortable concept. The example used of a medical condition such as pregnancy - that has positive connotations and then goes away. But is a medical condition a handicap? Doesn't it denote poor health? I don't know about this one.

Thursday, September 1, 2011

Why wait?

We all know that eventually we will die. There is no way around it. Yes you can freeze your body and keep it in storage forever but you are still dead. Sorry. The Cornered cartoon above ran yesterday and if you see it on GoComics.com the comments are pretty evenly split about wanting that pharmacist or wanting to avoid the pharmacist. Some people just commented 'sick'.

Recently I also read an article on the controversy surrounding doctor assisted suicide. Oregon law currently allows it but patients must be over 18, have a diagnosis giving them six months or less to live, make the request to their doctor twice at least 15 days apart, and have another doctor confirm their diagnosis and prognosis. People are split on this as well. Some think its morally wrong and others are all for it.

People for years have been saving up their prescription pills and using them to commit suicide when faced with a nasty diagnosis/prognosis. This just legalizes the process for those who have been told you will die a nasty death in a few months. But others without the diagnosis/prognosis will still save up their pills... But that's another blog post.

I think if I was told I had stage IV cancer, have tried numerous treatment protocols and nothing worked, and was told that's it - nothing left to try. I would want the option of being able to say "I don't want to wait and want to die on my own terms". I would have to be very convinced that death would be painful and nasty and involve a lot of suffering. I realize that this might not be for everyone. But this is a country of choice. People live their lives the way they want, Democrat, Republican, Green Party, Independents, etc, they go to church or not, they have children or not, they practice their own beliefs, are vegan, vegetarian, or omnivores, and many other choices.

Why can't we also have the choice not to have to wait if we are so far into an irrevocable process that will only end painfully? Ask anyone how they want to die and I think all will agree they want it to be fast without a lot of suffering. If you are able to skip the suffering and the long wait, why not? I realize this is controversial but I would like to see this legal.