The weighty question

We are a fat focused society. Do not deny this. We complain about the whole range of the issue - from the diabetes and obesity epidemics all the way to the poor body image rail thin models give us. Diet and weight have been linked to cancer. We are supposed to develop good habits to control our weight.

We weigh ourselves, compute our BMI (what ever it really signifies), diet, eat or vegetables, try to get more fiber, and exercise, exercise, exercise. We are focused on fat. We are trained to believe fat is EVIL and causes our demise. (On candy filled Halloween I choose to blog about fat.)  Furthermore we need to eat 'right' as well. We are not supposed to eat the tasty things, only the 'good' things. I believe too much cardboard consumed leads to crabby people.

They tell us that we need to eat right to prevent cancer, diabetes, other ailments, and essentially delay our expiration dates. They tell us to exercise and get our heart rate up 3 hours a week - or what ever the latest recommendation is. They tell us to weigh ourselves regularly and keep a food journal. They tell us not to weigh ourselves daily and keep a food journal. (I tried keeping a food journal - it worked for about six hours.)

With all my medical misadventures in the past few years, it is not unthinkable that my scale has reached an epic level never seen before when related to my body. In all my appointments accompanied by my husband, I had one rule - he was not allowed to know what the scale said. I tried eating right (and what does that mean besides more vegetables and less chocolate?). I went to a nutritionist who told me that I needed to eat tiny bits of food and expect to lose weight very SLOWLY. I was not encouraged.

Last winter I took drastic measures and joined a gym which gave me a fitness plan. I had belonged to another gym for nearly ten years. I knew how to use the treadmill usually without pain. I read the little diagrams on the machines and tried to figure out how to use them but usually ended up with back pain. I decided I needed professional help.

I went to the new gym with optimism. It wasn't the best gym for me. The old gym was a five minute walk - past a bakery, Chinese restaurant, two pizza places and an ice cream shop - but it was very close to home so I never had the excuse that it was out of the way. The new gym is a good ten minute drive - more when its school bus time. 

At my first visit to the new gym, they actually listened to my list of ailments without fainting with shock. I have just a few limitations - no treadmill because it bounces, no twisting my back, no lifting more than 15 lbs ever, and then bad back, bad ankle, bad knees, tennis elbow remnants and lymphedema arm. They actually gave me an exercise plan and showed me how to use the machines. They have the good machines - ellipiticals and bikes with back support, hydraulic machines where you fight resistance instead of gravity. I usually do get there three times a week.

I even get three month check ups to help tweak my exercises. I was overjoyed that the first one showed 11 lbs missing from my body - I hadn't missed them. My next check up showed another 3 lbs missing. I now watch the scale go down slowly. Every so often it the scale ticks down another pound. I anticipate another year of weight loss at this rate and think I might have joined the gym for life. But the scale is going in the right direction so I am happy. And I plan on having my own little candy bar stash after tonight's trick or treating and see nothing wrong with it.

I am not aiming for a perfect weight and couldn't care less what my BMI is (because I really don't understand what it means). I will eat what I want and exercise regularly. Its a good thing I prefer lots of vegetables and fruits along with my candy bar stash. And no one will ever know what I weigh other than the doctor's office and my scale.

Sensitivity training

Why do illnesses case normally sensitive people to develop open mouth-insert foot syndrome? Its one thing when someone gets the flu or a common curable malady with a nice positive outcome to be a normal person but when its a more significant ailment  like cancer, MS, diabetes, to become insensitive dolts?

I came across this column reminding me of the idiotic things people do and say when someone else has the ailment. I must say I am allowed to be cynical and idiotic when I am the one with the ailment. I am free to talk about odds, statistics, hair loss, but I will bring them up if I want to. No one else should. One of the 'perks' of cancer is being the one to choose the topics of conversation relating to my health. You can feel free to talk about other things - like your latest hot date, shopping trip, family vacation, run in with your boss, how your spouse and children are slowly driving you to insanity or some juicy gossip. You can also ask me about my latest doctor visit but if I choose not to discuss it, don't be offended. I'm just not ready to or there is nothing new to say.

I will never talk about battling, surviving, or being on a journey or being a warrior because those don't apply to me. I am not in a battle. I am certainly not taking on the label 'survivor', and my journey only takes me to doctor appointments with occasional detours to pick up a prescription or ten. A warrior? No, I don't have war paint, I don't feel the need to run around shouting from the tree tops about my latest win.

When faced with a person with a life threatening illness, think about how you would have a nice polite conversation with someone while paying attention to the hints and cues and not opening your mouth and inserting your foot.

Its not just one cancer

Yesterday I posted about thyroid cancer, my other cancer. Elisa left me a comment which I found very appropriate:

"We must be reminded that everyday people of this society is fighting a different kind of cancer battle. May this month be not just a reminder of Breast Cancer awareness but everyday reminder that cancer is just there and we need to be aware of that, whatever it may be."

She raises the very good point that every day people are coping with cancer and not just breast cancer and not just in October. While breast cancer is the most common cancer for women, it is not the only cancer. The American Cancer Society estimates there will be 1.6 million cases of cancer in the US in 2011 and 572,000 deaths. Of these 233,000 cases of breast cancer will be diagnosed and 40,000 deaths from breast cancer. While it is a little early in the day for complicated math (no coffee yet either), I can guess its somewhere around 1/8 of all cancer diagnoses are breast cancer and less than 1/10 of all deaths will be due to breast cancer.

That leaves a lot of other people with other kinds of cancer. There are more cases of prostate cancer in the US than breast cancer and lung cancer still kills more in both sexes. While we now can safely say we have breast cancer awareness, we need more other cancer awareness.

Also, cancer is an every day, not just in October ailment. You don't really get a 'day off' with cancer. I mean you can have days where you don't have a doctor appointment but it never really goes away. You can meet people all the time who say 'after cancer, I have been much more vigilant about my health', or that they worry about recurrence or that they appreciate life more or that they try to eat right. Cancer has become a turning point in their lives which means they still remember it daily. It may have been a turning  point but it also looms over them.

Cancer is an every day, 24/7 ailment. There are many other ailments that fall into the same category - diabetes, MS, etc. It becomes part of your life forever, not just one month of the year.

That other cancer

This is October so its all about that pinked stuff. But there is my other cancer - thyroid cancer. When I had thyroid cancer, there were something like 12,000 cases each year. Now there are a lot more, I think just under 40,000. According to the National Cancer Institute, in the 1970s there were less than 5 cases per 100,000 people, now there are more than 12 cases per 100,000 people. So take that fact and the increased population and basically the number of cases has at least tripled in the  past 30 years.

Thyroid cancer rates in young women are increasing the most. It is not really understood why the rates are increasing so much. Yes it is a treatable cancer, often called the 'good' cancer not that any cancer can ever be good - those people who call it the good cancer, deserve a smack in the head. The common treatment for thyroid cancer is to remove the thyroid.This is a very important gland in your body and regulates many things. While synthetic thyroid hormones are available, you are never quite the same.

Thyroid cancer deserves more recognition as it is increasing in incidence, not decreasing as many cancers are.

What is this 1 in 8 business?

1 in 8 is the most over used and misused breast cancer statistic ever. And now it is popping up again. First of all those who have the 1 in 8 chant going in terms of chances of getting breast cancer in your lifetime should understand that the risk greatly increases as you get older. Breast cancer is much rarer in your 30s and 40s.

This is from the National Cancer Institute's website:

"The estimated probability of being diagnosed with breast cancer for specific age groups and for specific time periods is generally more informative than lifetime probabilities. Estimates by decade of life are less influenced by changes in life expectancy and incidence rates. The SEER report estimates the risk of developing breast cancer in 10-year age intervals. These calculations factor in the proportion of women who live to each age. In other words, they take into account that not all women live to older ages, when breast cancer risk becomes the greatest.
A woman’s chance of being diagnosed with breast cancer is:

• from age 30 through age 39 . . . . . . 0.43 percent (often expressed as "1 in 233")
• from age 40 through age 49 . . . . . . 1.45 percent (often expressed as "1 in 69")
• from age 50 through age 59 . . . . . . 2.38 percent (often expressed as "1 in 42")
• from age 60 through age 69 . . . . . . 3.45 percent (often expressed as "1 in 29")

These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower, depending on a number of factors, including her family history, reproductive history, race/ethnicity, and other factors that are not yet fully understood."

But now this 1 in 8 odds is popping up in terms of the number of women who can really can attribute their annual mammogram to saving their lives:

"In an analysis published this week in the Archives of Internal Medicine, researchers at Dartmouth estimate that only about 1 in 8 women whose breast cancer was identified during a routine mammogram actually owe their lives to the screening."

This is from an article which covers the debate on the benefits of annual mammograms again. First of all, do we need to cover this topic again and again and again? Give it a rest. And how can you tell a woman whose breast cancer was found in a mammogram that she would have found it early enough to save their lives? My tumor was found on an annual mammogram when I was 45. I probably would not have found it myself. I had a physical with a breast exam about a month before my bad mammogram and nothing was detected. So would I have been able to feel it a year later? I already had one positive lymph node. 

But I digress, 1 in 8 is a misused statistic. And what it also says is that 7 of 8 women will not get breast cancer.

Over the top

Okay, I lied. Again. I'm sorry. I'm writing about pinkification again so if it is really driving you crazy feel free to skip my blog today and read it again tomorrow. I was surfing this morning and came across a list of weird things that have been pinked. If you must buy pinked things, you might as well get something really weird... but check the fine print first.

Penguin Group Romance Novels- They have a Read Pink program and will donate $25,000 to the Breast Cancer Research Foundation. But I couldn't find how much of each purchase is part of the $25,000.... Maybe they are just making the donation and not taking a specific amount for each book. I can see the connection - romance novels are read by women... Not that bad an item.

Pink Ribbon Pasta from the Pasta Shoppe. 10% of each purchase goes to Komen... But I didn't see a maximum being donated. But pink pasta with red sauce might look yucky on your plate.

Pink Boxing gloves - 'A portion of each item goes to the Breast Cancer Research Foundation' - so what portion? Is there a maximum? Can I have a pair to take out my frustrations with my health and not hurt my hands if I get the desire to punch something?

Delta Sky Miles & Minute Maid Pink Lemonade - 10% of your membership fee goes to the Breast Cancer Research Foundation. They also give you an opportunity to donate directly. And 100% of all sales of Minute Maid Pink Lemonade in October are going to the BCRF as well. What ever happened to free inflight beverages?

A car - I am not kidding on this one. You can get a Fiat 500 with a breast cancer ribbon decal. $1000 of each car purchase goes to the Breast Cancer Research Foundation. Again I did not see a maximum being donated.

Carry-on bag from Tumi - 20% of the $445 price (or $89) of a special multi color pink bag goes to the Breast Cancer Research Foundation during October.

Pink Ribbon Cable lock - It vaguely states that the manufacturer donates a portion of the purchase to the National Breast Cancer Foundation... I would skip this one. How much is being donated? Don't waste your $14.95 plus shipping.

9mm Hand Gun - Just because Smith & Wesson now makes a pink gun, does not turn me into a card carrying member of the NRA. They don't tell you how much is being donated... And its out of stock.

Magnetic hammer - I am not a tool persona nd am not sure why a hammer needs to be magnetic but a pink one? No thanks. I already have a pink tool set that has a pink hammer - that was given to me as a joke. (My husband refuses to use any of the tools in it.)  This company has its own Pink for a Purpose fund which gives money to Avon's Breast Cancer Awareness and Anti-Domestic Violence funds as well as a pet care fund. But how much?


Swiffer Duster kit - but its out of stock....

Beer Pong Table - I didn't know they made beer pong tables never mind pinked ones. Since I am long since out of college, I don't need one. I can see these in fraternity houses across the country. And its the official size of the World Series of Beer Pong and the Atlantic City Beer Pong Championship...$10 of each $139.95 price (on sale from $169.95) goes to breast cancer research... but what organization?


Skis from K2.... But they don't tell you how much or who it is etc.

Okay. Most of these are over the top. But if you must buy any of them, be sure you know how much of your money is going to what organization and if there is a maximum. Often companies set up these products and give a portion of your purchase to a non-profit up to a certain amount. After reaching the maximum, the portion becomes part of their profit. I promise to stop blogging about pinkification. I am so happy October is almost over.

It is a balance

When we are sick, hurt, or in pain, we are trained to rush to the doctor and say 'heal me, cure me'.  The doctors are trained to examine, test, treat, and prescribe. And to avoid potential malpractice, they test, treat, and prescribe some more. I admit I am one of the people who is quick to run for treatment (am I a hypochondriac these days?) when I have an 'owie'. But I try to slow myself down.

I went to the doctor for my shoulder in early September because in mid-July I caught the corner of my car door in my shoulder which was extremely painful and bruised a week later but slowly got better so I ignored it. Then it started hurting again to the point that I spent the last weekend in August with ice on my shoulder for three days. At that point I was ready for a bit of medical attention. After an x-ray the diagnosis was I had done something to my shoulder and it was probably almost healed and then I overused it. I was told rest it some more and keep icing it. It is slowly getting better. I have enlisted help at the gym to tweak my work outs to help heal it and not re-injure it. There was a momentary flash of disappointment at the doctor's office that there was nothing else to be done. Did I want/need a prescription, test or procedure? No.

I am also 'discussing' my blood pressure/pulse issues with my doctor. We have currently agreed on a little more testing and if it is all normal I will get another medication. A lot of people think blood pressure medication is no big deal. But to me it is. I already am on five daily medications - two for my back, one for my well-being/sanity, one for my thyroid, and one for post breast cancer. I don't really want another one. If I could ditch them all I would. And balancing them is complicated. I take two pills when I wake up. I have to wait an hour before I can eat and take another round of pills before leaving for work. When I get home or at least four hours later I take my vitamins. Finally at dinner time I take another round of pills. If I add another one to the mix I will have to figure out a new schedule because some things need and empty stomach or a full stomach or can't be taken with other things. Its a balance I try to maintain and every new pill requires rebalancing.

If a doctor prescribes rest, lifestyle changes and a wait and see approach, I am happy to leave their office with those recommendations. I dislike the need for tests, procedures, and other medical adventures. Apparently there is a term in medicine for this called 'clinical inertia' which has some negative overtones. I don't think its negative. Tell me there are not millions of parents out there who are delighted to take their screaming, feverish child to the doctor and be told that it is a cold and will go away in a day or two and doesn't require antibiotics. Find me some patients who aren't happy to go to the doctor about a concern and are happy to be told that it will go away with rest and ice.

I would rather have clean x-rays than another medical (mis)adventure. I think Americans tend to be over treated in many areas. Too many antibiotic resistant infections are the result of over-prescription of antibiotics. Too many tests are ordered in a rush to get a diagnosis. A little more inertia or 'wait and see' might not be a bad thing for all of us.

The way of the future

My non-medical opinion of cancer treatment is that there are a lot of assumptions built it. If you have a tumor,they should take it out. If they think you need chemotherapy, they guess at the dose based on your body weight. If you need radiation, they try to hit only where the tumor was, this is a change from hitting the entire area of the body. They assume you will respond as well as everyone else who had the same treatment protocol but realize that not everyone does and they don't necessarily understand why. It is realized that many cancer patients are either under treated or over treated because they simply don't understand enough about cancer.  And often the treatment is almost as bad as the disease - it causes significant short (hair loss, nausea, etc.) and long term side effects (future cancers from radiation and chemotherapy, heart damage).

Cancer treatment is often only treating the symptoms. Surgery excises the tumor and the clump of cells. They hope chemotherapy will zap any remaining cancer cells in your body - but my non medical brain asks if chemotherapy zaps all cancer cells, why are there so many kinds of chemo if they zap all cancer cells? I feel that this goes back to the all cancers are the same theory that was disproved generations ago. One treatment does not fit all. Radiation tries to zap the cancer cells in a certain area - where they think they are. But it also damages the healthy cells and causes all kinds of burning. Some systemic treatments like Tamoxifen or aromatase inhibitors work for some women and not for others and are trying to make your body less attractive to hormone receptor cancer cells.

But none of these treatment focus on what I call the key questions:

- Where did these cancer cells come from? Why did they start mutating in the first place?
- Why was this part of the body more attractive to the cancer cells than others?
- What is the underlying cause of all of this?
 
When I heard Dr Love talk on Friday and she talked about the importance of the type of cancer not just its location, I was intrigued to say the least. I have also heard many times of the trend to personalized medicine. But now the next step is beginning to expand on these areas and actually take concrete steps to make changes.

Brigham and Women's Hospital and Dana-Farber Cancer Institute have launched a massive study to test cancer patients' tumors for hundreds of genetic aberrations. The goal is to obtain a better understanding of the underpinnings of cancer and how to tailor patient's treatments.  They want to have 10,000 patients each year to include in their study.

There is another program at Mass General since 2009 where they have been scanning the genes of 50-60 patients each week of their tumor tissue and have identified 160 genes and 15mutations. Their goal is to help guide treatment or to pave the way for new clinical trials. MD Anderson is moving toward a broad genetic analysis of all cancer patient's tumors.

There are two issues here. Dr Susan Love wasn't talking about  genetic markers but more of the type of tumor characteristics - hormone receptors, Her2/nu status, etc. However as cancer cells have damaged DNA, their genetic sequencing grows in importance.

I think this is the way of the future and how we will look at cancer as we move forward in both a way to find their cause and to find a cure.

I wasn't evasive

I detest evasiveness. At times I find it rude. If someone asks you a question and you don't want to answer, it is polite to give some sort of answer and then change the subject to something you are more comfortable discussing. That is basic. But its the one's who will never answer any questions  on any subject that really rile me. If you say 'did you have a nice lunch?' and they can't give any kind of answer - from it was okay, I had a tuna, I skipped lunch and went shopping or whatever but the lack of any kind of answer becomes rude. I don't need to know everyone's life story but sometimes a light conversation becomes impossible. Someone who is incapable of answering any kind of question, especially if they seek you out for social events, either has significant 'issues' and/or no social skills.

I know a few people but don't spend time with them because they don't answer questions. They only ask me questions.  If you ask them an innocuous question such as 'what did you do for the holiday?' they evade the question. That is an easy question you could answer it in any number of ways 'I saw some friends, got together with family, went to a restaurant, brought a pie over to join friends for dessert, etc'. One woman said to me 'I didn't do anything'. A few weeks later another friend told me that she came to their house for the holiday. The original answer was basically a lie which is very rude.

I find when I spend time with people like this, I feel very frustrated. It is impossible to have a conversation with them, you can never get a clear answer, and I come away from it resenting them. They seem to want to know everything about me but refuse to tell me anything about them in return. It should be an even trade. You asked me what I did for the holiday and I told you but when I ask you, you lied. You asked me what I did for lunch and I told you but when I asked you in return, you couldn't/wouldn't answer.

I have had this happen with these people even when making choices on a menu at a restaurant - Caroline, what are you going to have?' 'I'm thinking of the chicken. What about you?' 'Why are you choosing the chicken, what do you think of the steak?' 'I'm in the mood for chicken.' 'Are you getting a salad or vegetables?' And on and on and on. Um, is my opinion that important to you or are you just incapable of making your own decision or have no social skills or practicing your skills for the next inquisition?

What happens in the end is I refuse to spend time with them and avoid them. I don't consider them a friend at any level and don't waste my time with them as I think they are rude.

However there are times when a little evasiveness is called for. I am sometimes evasive with my health issues when I am not ready to discuss them. If asked if about something I am not ready to discuss, I simply say 'I'm waiting to go back to my doctor', or 'I'm feeling okay these days', etc. Which is some sort of answer and allows for a conversation. I also sometimes use some evasiveness to edit myself. When I wear my lymphedema sleeve - which is only at the gym or when my arm is bothering me - sometimes people ask what it is. I have taught myself to just say it is a compression sleeve and that's it. Its the truth, its a compression sleeve but there is no reason for me to go on and say 'well I had breast cancer and now lymphedema'. I do not need to spew out my medical history to virtual strangers.

Earlier this week, a woman walked into the locker room a t the gym as I was putting on my sleeve before going to lift weights. She asked what the sleeve was for and I said it was a compression sleeve due to arm issues. That was enough. That was all she needed to know. I was slightly evasive I felt but told as much of the truth as I wanted. She got an answer that she was seeking and was satisfied. We both were happy with the interaction.

I left the locker room and went into the weight room where there was a woman working out. She asked me 'did you have an axiallary node dissection? I'm a physician. But I don't mean to pry." I said yes and we had a discussion about how long after surgery that I developed lymphedema (1.5 years) and what caused it (a fall on my arm on ice). But we didn't discuss my cancer etc. It wasn't part of the discussion. In the second  conversation I told what as much of the truth as I wanted and she got the answer she was seeking and was satisfied as well. We were also both happy with the interaction. I felt I was a little evasive by not telling the whole story but I also didn't feel the need to unload my medical history - she wasn't my doctor.

The balance of evasiveness with telling the polite truth can be a fine one. Not everyone wants to know my medical history anyway. Its also me coping with my issues in learning to talk about things politely without evading and without recounting my entire medical file. I don't want to be rude and think I have figured out basic politeness by now.

Cancer treatment, cancer cure, and cancer cause

Yesterday I went to a free conference on the future of cancer care sponsored by the hospital I go to. I think I blogged about it before. But it was yesterday, I went and enjoyed it. I learned a lot. (And I learned I should not have sat in a crappy conference chair for four hours because it made my back hurt - a lot! But I took my drugs and suffered in silence until I got home and could whine to my husband and get an ice pack.)

The conference had three one hour sessions. You could choose your topics for the first two - I chose the breast cancer ones because I don't have lung or prostate, and the other stuff I didn't care to learn about.

The first one I went to was actually given by my surgeon and my medical oncologist. The surgeon talked about how breast cancer surgery has changed and is still changing. It is now focused on less is more. Studies have shown that in the majority of breast cancer diagnoses, a lumpectomy with radiation is just as good as a mastectomy. There is also concern for not taking the underarm lymph nodes even if there is cancer in 1-2 sentinel nodes. So now, even though I had one positive node, I probably would not have had the axillary node dissection which has since resulted in lymphedema. Also, decisions on chemotherapy and adjuvant (Tamoxifen/aromatase inhibitors)

The next session was by the head of the radiation oncology department. Times have changed here as well. Starting early this year, they are now offering partial breast radiation instead of full breast. The theory now is that they only need to target an area around the original tumor that is 1 cm around it. As opposed to radiating the whole breast which is more painful and takes weeks. The partial breast treatment can be completed in one week with twice a day treatment. This has been available in certain parts of the country in trials and not as a standard treatment until very recently. I probably would have had partial breast radiation as well. The decisions on partial or whole breast radiation are designed to involve the patient as much as possible. The focus is on educating the patient, getting them involved in decisions so they can regain some control over their bodies.

The final presentation was by Dr. Susan Love, who was very funny and provided a great presentation. She said the focus now is not as much as where the tumor is in your body - breast, lung, stomach - as much as its characteristics a/k/a hormone receptor status. Breast cancer is not the only kind of cancer that has hormone status.

In addition, she said there is now thought that cancer might be caused by a virus. A lot of research has been done over years and decades on finding a cure for cancer which we still don't have. But what if research changed and focused on finding the cause.

Using cervical cancer as an example, it has been found to be caused by the Human Papilloma Virus (HPV). Once it was found to be caused by a virus, a cure was developed. She is working on developing her Army of Women (www.armyofwomen.org) where she wants to have a million women and men to participate in surveys and studies that help figure out why some women and men get breast cancer and most don't. (Join if you haven't.) One of her theories is that if researchers had only focused on rats and mice in a lab, they never would have discovered HPV - rats and mice can't get the HUMAN Papilloma Virus because they aren't human....

Another take away from Dr Love is on prevention of breast and other cancers. The three key areas are:

• weight - not necessarily what you eat but what you weigh and not gaining weight.
• exercise - 3 hours each week of getting your pulse rate up.
• stress - we can't prevent stress but we can handle it better - this means therapists, talking, support groups, prayer, meditation or whatever works for you.

So get an exercise group together to workout, you keep your weight down and have an instant support group - her idea, not mine - but I like it and might steal it.

Overall, I was very surprised to learn how much had changed and how much hasn't changed in the past four years. Cancer studies can take years or even decades to publish results as they often follow the participants health for a long time after. This can slow treatment changes. But change has happened.

One note on the conference is that conferences run by doctors and hospitals provide healthy food. I went and was craving a chocolate chip cookie. I figured they would have something close to that. I was wrong. They had yogurt, 'shooters' of nuts and dried fruit and cup up apples with peanut butter. After they had had cheese and crackers and veggies and dip. I saw some fried egg roll things being passed around but there wasn't a chocolate chip in sight. In my evaluation I asked that they repeat the conference annually. Maybe I'll email and request cookies for next year - cancer people need cookies and Dr Love said it wasn't what we eat as much as what we weigh and I do have occasionally cookie cravings even though I eat my vegetables.

Mammogram controversy - more on the if we can't kill them, let's confuse them theory

So when should women start having mammograms. One theory is that annual mammograms lead to more false alarms and unnecessary biopsies. Then the opposing side says mammograms in younger women are essential as younger women are more likely to have their cancers found in early stage through mammograms than by self exam.

Hmmm.... so what is a smart woman to do? On one hand if you have mammograms you might have scares and unnecessary stress. On the other hand, your cancer is much more likely to be caught early thus allowing you to live a longer life. Me? I would opt for the longer life idea. I have had annual mammogram since I had a fibroidadenoma (fancy word for benign tumor) at the age of 23 and my breast cancer was found in a mammogram at 45. I think I also would have been having mammograms anyway because of that other cancer.

So if you are confused you are not alone. I think it is a giant conspiracy anyway. So if you have a nasty medical diagnosis, your doctors give all kinds of advice and expect you to make a rational decision while in the fog of 'OMG-I-have-cancer-and-gonna-die'. Confused patients are much more malleable and cooperative.... 'Um, I'm not sure. Doctor what should I do?" And then they make the decision for you.  

Donating

I'm sorry. I lied I wasn't going to blog about pinkification anymore. But I am. I think everyone agrees we all have plenty of breast cancer awareness thank-you-very-much. We all have something pink (I even have a pink handled KitchenAid chopping knife and ice cream scoops and they work really well) and we are all aware of breast cancer. I think the general consensus out there is that we are done with awareness and would like to move on to research and a cure.

One of the big problems with pinkification is so much of it is run by the same organization Komen for the Cure (I can call them for the Cure because they 'own' that term). They are everywhere. Snapfish has pinkified their products and gives a donation to Komen for every purchase. You can find them everywhere. But they are not the only organization out there providing funds for bresat cancer research and awareness.

I think Komen has done some wonderful things for breast cancer awareness and deserve a lot of the credit for what they have done over the past 20 years. However, their name may say 'for the cure' but if you look at where their money goes -  more than 2/3 goes to breast cancer awareness,  less than 1/3 goes to research for a cure. So their name may say it (and they may think they 'own' it) but they are really 'for awareness' not 'for the cure'. (If you don't believe me go look on page 13 of their financials here http://ww5.komen.org/uploadedFiles/SGKFTC_FY10AnnualReport.pdf).

A friend of mine was complaining, and I have heard this from others as well, that 4-5% of their dollars are spent on metastatic breast cancer research. And is that 4-5% of the total or of the less than 1/3 is another story - we aren't sure? In other words, their money goes to awareness and not research regardless of what their name is. And so do your dollars if you support them.

The American Cancer Society puts their money to providing wellness/being healthy activities, information and support during treatment, funding cancer research, advocacy to get laws passed to keep us healthier (anti tobacco laws, etc), and providing access to health care for uninsured or under insured. I don't have all their numbers but while their funds go to research and other good areas, not all goes to research.

This goes on and on. Their is nothing wrong with giving money to Komen or the American Cancer Society but you should know where your money is going. Maybe Komen started off being 'for the cure' and evolved into 'for awareness' - that happens. If you are interested in where your donation goes, start with the charity's website and look for the About Us or something similar section and see where they say their money goes. Then go to charitynavigator.org for a non-partisan look at how well they spend their money. Then make your decision to donate.

A note about smaller charities: there are many small local charities out there that are not listed in charitynavigator.org or other online directories because of their size. They may do many good things and you should not overlook them in making donations. If you have a question about how they spend their money, call and ask. If they can't give you an answer, then skip them. If they can answer, then send in your donation.

Up, down, up, down, up, down

No that isn't a seesaw. That's my internal body temperature - thank-you-Femara (or what ever its generic name is these days). I asked my oncologist about it. Most people get hot flashes. I don't. It gave me the inability to regulate my body temperature. This means I can go from normal to boiling hot to freezing cold and back in the space of about five minutes without moving or changing anything or turning a fan on and off.

I am overjoyed to be coping with such a minor side effect (not) in that at least I am not freezing cold all the time. My husband tells me I am a lizard because I am always cold. I tell him when I married him his job was to keep me warm. But now, I bounce wildly from one end of the temperature spectrum to the other. An example is yesterday afternoon I was driving home I alternately had the heat on, the AC on and the window open. That was in a 30 minute time period.

But in the spectrum of cancer side effects this is relatively mild and I only have another 15 months to cope with it. That's okay, its getting progressively worse as time goes on. By then I'm sure I'll be vacillating between the South Pole and a preheated oven. I can't wait.

But one thing I can wait for is my lovely day I have scheduled. I will get off my lazy but and go to the gym in pursuit of deflabbiness. After that I have a quick meeting and then will come home and attempt to productively work from home before I have a medical misadventure scheduled. Another needle under my knee cap. Now I know its not that bad. I had the other knee done in June and it was relatively pain free. I did have a lot of pressure in my knee after and had to sit there for twenty minutes to make sure I wouldn't pass out or something. Its just the idea of a needle under my knee cap. Ick! Its like fingernails on the blackboard.

When was the last time you saw a blackboard anyway? They have gone to obsolescence. Generations of children will grow up unable to irritate their classmates by running their fingernails down the black board. But I digress. Both the ideas of fingernails on the blackboard and needles under the knee cap make my spine tingle.

But I digress. I will take my over/underheated body to deflab at the gym. Later I will approach my needle misadventure with my inner wimp (who is accompanied by my inner size six person) by telling them about my needle phobia and they will attempt to distract me (which they are pretty good at) and I will plan on spending 20 minutes with a book on ice before proceeding back home. I can be such a wimp at times. But I have learned to put my wimpiness to good use.

Advantages of blogging

After 4.5 years (yes really) of blogging, I have decided there are some advantages so I think I will probably continue for a while longer.

• - I get to express my opinions. I think I probably have lots of opinions - on doctors, being a patient, pinkinficiation, stupidity (on my part and by others), working, pets, married life, commuting, medications, medical misadventures & procedures, medications, insurance companies, health care reform, pharmaceutical companies, driving, cancer research, the elusive cancer cure, and I am sure the list goes on. But I get express my opinion in my blog. I consider it 'my space' and would miss it if I didn't blog any more. And I have lots of opinions. My husband would probably consider a divorce if he had to listen to my opinions every day. So maybe it helps preserve my marriage as well. Or he would just listen to his iPod more so he couldn't hear me.

• - I choose the topics I want to blog on. People do send me requests to blog on their sites or about their book/movie/organization or to help support them. I generally ignore them because I don't have time, it isn't the purpose of my blog, and basically, I don't want to. Occasionally I do write about some of the suggested topics but only if it really intrigues me. I read the daily paper, local and national news online and sometimes overseas and follow a bunch of blogs. I find topics in lots of places and write about what is interesting on that day. Sometimes I look back and try to figure out why I wrote on that topic and assume it must have interested me at the time.

• - I get to control the information flow. I started my blog in June 2007 to control the information flow about my second round of cancer medical misadventures. I could write about what I wanted to. If I wasn't ready to discuss it, I wouldn't write about it. I am essentially a lazy person and don't want to answer a lot of phone calls and emails. This is true to this day. I only write about my medical misadventures that I am ready to. By the end of October I will probably have had 10 appointments this month, including a couple of adventures with needles. I am not ready to talk about all of them. Some of them are just boring anyway. (I had a two minute appointment yesterday with my meds therapist and the result is she refilled my prescription and I will see her again in three months.) The rest of them I'm not talking about, and may never. 

So blogging may become a fixture in my life, if it hasn't already, as I have found benefits in it. I just haven't figured out who all the people are who read  my blog. It amazes me how many do read it. Maybe they would miss it if I stopped as well.

Cancer events

I have mixed opinions on cancer conferences or events. Yes you get to meet other lucky people with cancer and listen to perky speakers to try to provide an optimistic view on your cancer. I attend them but sometimes leave feeling I was either put on display (she is someone with cancer and has to wear a stupid tshirt, wrist band, pin or whatever that denotes you as a person with cancer, usually with the s-word title) or been seen as a marketing opportunity. And the ones which put the cancer people in a special group and are showing their support of them by segregating them and encouraging everyone to cheer them on, are the worst. I really hate those and attend as few of these as possible.

These groups have the best of attentions and assume all of us with cancer want to be special and applauded for our 'battles', 'fights', 'strength', 'courage' and all sorts of other little tags. But some of us don't want that special attention. If I am going to tell someone about my life with cancer, I am not going to do it with a label or as a group, I'll talk about it one on one. It is interesting, if I participate in these events as a volunteer as opposed to an attendee, I have complete strangers coming up to me and telling me their cancer story out of the blue. But that is them one on one, not as a group.

But Friday I am going to a cancer event. It is a free conference being sponsored by the hospital I go to. It will include a presentation by my surgeon and oncologist on new personalized treatment in breast cancer. And a keynote session by the one and only Dr. Susan Love. I am going as an attendee. I am not going as a patient. I am not going as a person with cancer. I am going with interest in learning the latest. I do not expect to be singled out as a person with cancer. I do expect to be asked if I am a patient at the sponsoring hospital, and since I already am, I expect no pressure.

Pinkification is pissing people off

Try saying that three times fast... (I don't use usually use the term pissing people off but it fits here and I apologize if you find it offensive). I wasn't going to write about pinkification any more as it pisses me off. But then I read the morning paper and there was a nice article explaining how it got to where it is and  why it makes people so mad. 20 years ago Komen started the pink ribbon idea at an event in New York and it did great things. We are all now aware of breast cancer, especially those of us who were lucky enough to get it.

So pinkification was started in 1991 with the first pink ribbons distributed. Then it has evolved into all sorts of pinked things - pink trash cans, pink guns, pink KFC baskets, pink perfume (made with known carcinogens and sold by Komen), and pink football helmets. Pinkification isn't helping anymore. If it pisses you off, you are not alone, there is even a book about it, Pink Ribbon Inc.

I think its time to let loose my inner rebel and come up with anti-pinkification and read more from Breast Cancer Action  and Think Before You Pink.

Halfway

I have survived half of Pinktober... Well since there are 31 days in October at noon tomorrow it will be halfway but that is a mere technicality. I have not bought a single pinked thing. The only pinked things I would consider buying are those made by individuals who are giving the money to cancer research or support. I will not contribute to the marketing schemes of the corporate world who pink their products to increase their sales. (Go occupiers!)  I am not getting on my political or anti-corporation high horse here but allow me to explain.

I talked to my mother the other day (who is much better after her medical misadventure and hopes to be freed from her oxygen tank on Monday) and she was telling me she likes her coffee yogurt. There is only one brand of coffee yogurt available around here (coffee yogurt is okay, I couldn't eat it every day but she does) and for the month of October it has been pinked. She was wondering why they would bother having everyone send in their lids because how much money would they donate for each lid. Or go to their website and enter the special code online.

It really is a marketing scheme that works out to the company's benefit. A company could easily make a donation directly to cancer research or whatever. But where are the profits and publicity in that? Why can't the corporate greed get in the way and let the company increase their profits and look like a do-gooder?

So the company pinks a product and makes a big announcement 'for every yogurt lid you send in, we will make a donation to cancer research'. The public thinks they are doing something good by changing their brand for the month and buying the pinked product. The company's product sales go up for the month. And they give their donation of whatever preset amount they were going to give to charity anyway. And maybe they get more converts to their brand from the competition.

And for everyone who sends in their yogurt lid they get a bit more customer interaction which makes people remember the brand more and become more likely to rebuy in the future. Better yet, if they get people to go sign in to their website with a special code, they get their email address and they can continue to promote their product to the customer to increase future sales.

Why do you think these companies do these things? It helps their bottom line. Skip the pinked stuff and suffer for another 15.5 days of Pinktober and then send in your $20 to cancer research or what ever is your passion. You will feel better and the corporations won't get your email.

Another cancer statistic

I don't know what the real number is but coping with a friend or family member with cancer can either strengthen or sever their bonds. Sometimes gaps in a relationship can no longer be covered over while dealing with the more important life or death decisions and treatment of a cancer diagnosis.

It is not surprising to me. Cancer is almost as stressful for the family and friends as it is for the patient. I know of several cases of divorce or separation from online breast cancer message boards. Many of them were relationships that had been hanging on for years and with the added strain of cancer causes the relationship to fall apart. A divorce can be another unwanted cancer side effect.

It is difficult to think that in the middle of a medical disaster like cancer that sometimes the expected emotional support from a friend or family member just isn't there. Boston Red Sox pitcher John Lackey is divorcing his wife while she is in treatment for cancer. I don't think he deserves any blame in this. Its not his fault that his marriage fell apart at the same time his wife was in cancer treatment.

Relationships fall apart for different reasons all the time. A cancer diagnosis can be the last straw that ends a relationship. Also if a friend or family member cannot cope with the fact that someone they care about has cancer and they flee, the relationship will end. The patient is forced to cope with their medical adventures. Any other person is not forced to cope and sometimes can't and the relationship ends. I have friends who are no longer friends as a result of their lack of support.

I was lucky in that my husband was there for me through treatment. I have friends who were alone - one woman went to chemo by herself because she had no one to go with her. During treatment my husband was allowed to be there for everything but was not allowed to see my weight on a scale (the nurses were very cooperative with this). I think our relationship got stronger as a result. 

But many are not as lucky. But neither party deserves any blame for the divorce. John Lackey should not be blamed. I find it harsh when the media or others blame someone for a divorce in the middle of a medical disaster. Perhaps the relationship couldn't handle the added stress. But there is no blame here. It just another side effect of cancer - the gift that keeps on giving.

Sometimes its nice not to remember

Last year I had a series of very UNfun back procedures. One of them was a radiofrequency denervation which is just a fancy word for sticking hot needles in your back. I did not remember it as a fun experience. However my memory is wrong which is why I have my blog to remind me of what I did last year, and last week, and yesterday. (And you thought I wrote this to entertain you - its actually a written memory for me so I can look things up that I can't remember.)

Last May 19 I had the same procedure. I remembered it as being an awful nasty experience that I didn't want to repeat. But I am wrong. I read my blog from that day and it turns out I took a nap during it and didn't feel it. Now I am much happier. I do want some breakfast and can't eat because I will be sedated. I think this happened to me last year. I have informed my husband that for dinner tonight I want chocolate ice cream with nuts in it.

I am sure my day will be filled with needles - as in IV and back injections - but hopefully not a lot of pain to go with it. After this back procedure, I have scheduled a nap and then I get to go record a public service announcement on the local cable station at 4pm. I hope I am awake for it. I will set an alarm clock. That would be good not to record snoring.

Then I need to figure out when I can see my back pain doctor to schedule some of those really unfun procedures to work on the rest of my back. All those procedures I had last year have worn off so they have to be repeated. They can be repeated as often as yearly and if I get 18-24 months out of each one that is fine by me.

So I have nothing profound to write about today. I will report tomorrow on how I am feeling and maybe I'll be inspired to write about something by then. But right now I am starving and all I can think about is what I want to eat when I get home. Maybe I'll have ice cream for lunch.

On being a copycat

In elementary school or when among siblings later in life, being a copycat is not a good thing and can earn you a lot of derision. But sometimes being a copycat is a good thing. When diagnosed with some nasty ailment, all we think we hear from the doctor is bad news - you will need this surgery, course of treatment, will have these side effects and should be fine in the end. We can't get past the words 'should be' and focus on the seemingly dismal survival rates. What we really want and need to hear are the good stories of the people who are still around to talk about it.

In this time of the Internet and patient education, one resource not to over look are the stories from others who are or have gone through what you have. There is nothing more positive than hearing that someone else made it through treatment and is still around many years later.

There are lots of people online in blogs, message boards, articles, and websites who are telling their stories and many more who are reading them. I don't think the majority of them started with any more intention than to keep friends and family informed which is what I did. Some of them go on to turn them into books or non profit or for profit organizations - that is not something I ever plan on doing because that would require organization and work and I've got plenty of other work thank you.

A big emotional positive when diagnosed with anything bad is to find someone with a good outcome to copy and be a copycat. 
.

Pinkotober is causing denial

All this pinkwashing that is driving us crazy is having an effect with women - denial that they may get breast cancer. Apparently men realize they are supporting breast cancer awareness but in women its different. There is a lot of psychology here but apparently some man must have dreamed up all this pink crap because women react differently to the pink stuff - they are more likely to go into denial that they will get breast cancer or whatever it was that got pinked.

Go read this article (after coffee so you don't fall asleep) and it explains how men and women react differently to ads and colors in them. They also use the example of graphic warnings of cancerous lungs on cigarette packs - women are more likely to go into denial that they will get the ailment.

So as far as I am concerned the NFL can wear pink helmets and cleats and they are supporting breast cancer but all that pink stuff for women is a bunch of hooey. There are some ways to help reduce your risk of getting breast cancer but buying a pinked thing isn't going to help you.

Alert - another 'touching' cancer movie

Yes you will note the hint of sarcasm in my title as there is yet another cancer movie on TV tonight. I am a cynic about these. I am not comfortable with Hollywood's version of cancer often. When "The Big C" came out I was appalled by the title. I do admit to watching it and couldn't get past the third episode. Yes it was about cancer. Yes it was about someone who wasn't coping very well. But yes she was an hysterical drama queen. I won't watch the rest. I will also add that while the first season seemed to have reached some level of publicity the second season seems to have died a slow death and is now gone.

"Brian's Song" back in the 60's was a good movie. It kept the cancer side of it under wraps because it was the 60's and cancer was going to kill us all. I really liked "The Bucket List" because that did show the funny side of a terminal diagnosis and the differences between treatment for a rich person and a poor person when they get cancer.  I can't wait to watch "50/50". Apparently it is not as good as the first reviews expected but from the trailer I have seen it shows a young man coping with a cancer diagnosis 'even though he recycles' - you will get that joke if you have seen it.

But tonight on Lifetime is a movie called "Five". It is actually five shorts about different women coping with a breast cancer diagnosis. I will not attempt to stay up and watch it because it is a 'school' night and I have to get up in the morning but the DVR is set to record it on Lifetime at 10pm. At the urging of women on breast cancer support boards, I watched the trailer and am inspired enough to record it by the line 'why can't I get thigh cancer? I hate my thighs.' If there is no humor in a cancer movie I'm not watching it. Cancer has to include humor or it has already sucked the life out of you. But I digress. It is inspired by Jeanne Tripplehorn's own story.

I do plan on watching it later this week as I have two event filled days later this week which will leave me on ice (literallly) in front of the TV for a few days. (Thursday I am having that nasty back procedure and Friday I am getting a needle under my other knee cap and in between I have an appt with my PCP so I can tell her how healthy I am.) In between the drugs and the ice packs, I will have ample opportunity to catch up on the full DVR.

But if my inner cynic doesn't appreciate another Hollywood version of cancer, I can hit Stop and Erase Now.

What did we do wrong?

All of us lucky cancer people have one deep desire - how they hell did we get cancer in the first place? What caused it? What did we do right and what did we do wrong that put us staring down the barrel of the cancer cannon at the top of the really scary roller coaster hill? That is the only thing we want to know.... well maybe we want to know about the cure too but that's not quite as personal.

I mean I ate right, I like my fruit and veggies, my mother was always buying organic food before it was a fad, and she even fed us tofu (ick) growing up. But then we did play in the swamp across the street, under the power lines, and god knows what kind of run off was there. We also ate ice cream, french fries, flew on airplanes, played outside in the sun without sun screen, smoked, drank alcohol, stayed up late, did things that seemed like a good idea at the time but possibly there was youth and alcohol involved in the decision making process and will never be repeated.

There are all sorts of theories on what is a carcinogen and what isn't. They really don't know why some people get cancer and why some don't. They have linked tobacco use to cancer but there are chain smokers who smoke 2 packs a day into their 90's and the people who don't smoke who die of lung cancer in their 30's. So apparently there are other factors coming into play here.

Do cell phones cause cancer? Well maybe, maybe not, the jury is still out on this one. I mean lots of people got cancer before there were cell phones. They say cancer may be as a result of industrialization of the world in the 19th century. But people got cancer before that.

So we still don't know what we did wrong. We all just want to be able to tell other people not to do what we did.

I'm cheap

My husband says its a bad day when I have to pay full price for something. I hate to do that. It drives me crazy. I have been known to buy something, see it go on sale, return it and rebuy it at the lower price or just go back to the store to get the discount. If there is a way for me to save money I will. Forget about paying for shipping on line, I don't. I have a B&N card so I get a disocunt. I always order enough to get free shipping.

So how do I feel about planning ahead? I am a fan because it saves money. If you go to the grocery store and plan so you have a list, coupons and reusable bags, you save money. I plan.

But now I need to add end of life planning. Why you ask? Because it saves money. I'm that cheap. It is now proven (through yet another study) that end of life planning saves money. Also, I have no desire to end up on a feeding tube and life support with drool running down my face. Unless the IV has red wine in it.

I come from a family of cheap planners. When my grandfather died, my grandmother planned her funeral as well and prepaid for it to save money. She also had an 'in case of death' envelope which contained all the necessary information on what should go in her obituary and death notice, what to do for her memorial service, her cremation, and where the hidden silver was (my aunt was supposed to know but didn't which is good but apparently it was moved years before but that's another story). Twenty years later when she died, we had all the information we needed. My point is, and I always need a point, is that its not my fault I am such a planner, its genetic. 

Actually where I work there is an Advanced Cancer Support Group and one of the big issues is to help everyone plan their end of life with a Five Wishes directive. They decide where they want to die - home, hospital, hospice, with whom, etc.  I think it is a great idea.

So now I will have to work on my end of life planning. I also don't want to be a burden on anyone left behind. And I want to be cheap even after I'm gone.

Researching online

I know I have written about Dr. Google and his flaws before. Dr. Google can tell you that you have ten terminal ailments along with psoriasis, athletes foot, head lice and bed bugs when all you have is a mosquito bite. Dr. Google can be very scary. Dr. Google is not a real doctor.

There is so much medical information on line and it covers the gamut of good solid information to complete quackery and scams plus a lot of well meaning people who are sure that what worked for them will definitely work for you. You need to sort through what is there and figure out what to believe and what to ignore. My personal recommendation is to stick with the credible sites of WebMD, Mayo Clinic, BreastCancer.org, American Cancer Society, possibly your own hospital's web page etc. I would skip any website trying to sell you something that will cure  you (or offers you a share in a Nigerian inheritance). Yes you can get lots of good solid information online. And an educated patient is a comfortable position to be in.

Online message boards can provide a lot of support from others coping with the same ailment and should be included in your online research. If you read to what the patients say you can learn how to cope with side effects and the ups and downs of treatment. Its not that patients are doctors and can give you advice but the general consensus you get from what everyone else is going through offers a different type of information. A group consensus can be just as helpful as online medical advice.

The New York Times published an article earlier this week on this topic. The author feels his life was saved by what he learned online. He kept reading about the same doctor for his type of cancer. He ended up going to see him a thousand miles away and felt that this doctor gave him the life saving course of treatment. (One comment on the article is that it recommends going to ACOR.org for help - that front page hasn't been updated since 2002 and it is full of broken links so I think you can skip it.)

I know I have learned a lot on line from message boards in addition to receiving (and giving I hope) a lot of support. They definitely helped balance out the ups and downs of cancer diagnosis and treatment. They also encouraged me to ask more questions of my doctors and educate myself so I was more comfortable with my course of treatments.

Randomness

Just a bunch of random thoughts this morning.

• I find it very sad that Steve Jobs died yesterday. He had pancreatic cancer for 8 years - which is a very long time. Pancreatic is nasty and usually the prognosis is much shorter. It bothers me that he died, not because of who is was, but because yet another person died due to cancer and that he was so young - only 56. But if you look at the quality of his life in recent years, it is impressive. Yes he must have had his ups and downs but he did not retire until August - only two months ago - so he must have not let cancer run his life. That in itself is an impressive feat.
  
• Am I the only person who thinks automatically of cancer when someone is sick? I sometimes think I am too quick to think cancer for everything but am not sure I will ever not be able to think something is cancer. This is true both for myself and for other people.
  
• Yesterday I met a friend of my parents. She apparently has cancer of some kind but wont talk about it or discuss it. I don't see anything wrong with this, as long as she is caring for it which I think she is because she was on her way home from an oncology appointment. It may seem that she is ignoring it or denying it but if I think about it, I think it may be her way of coping and not discussing it to death. Its no one else's business but her own as to what ailment she has and how her health is going.
  
• All of this pinkification is driving me crazy. A friend of mine sent me an article (without a link so I can't post it here) that states:
  
  "But behind the goodwill and good deeds is an estimated $6 billion-a-year marketing juggernaut that has gotten so big and diffuse, some fear it's become impossible for many to know where their charitable contributions are going, or if that pink-ribboned item will help fight breast cancer at all.
  
  Moreover, some breast cancer fighters say the pink-tinted campaign is a sanitized, feel-good distraction from the realities of a potentially deadly disease — one that will result in nearly a quarter-million new cases of invasive breast cancer in the United States this year." 
  
  It goes on to add that:
  
  "Gayle Sulik, author of "Pink Ribbon Blues," a critique of the breast cancer awareness industry, called the estimated $6 billion spent annually on breast cancer-related events an eye-opener, considering that the National Cancer Institute's entire annual budget is a little more than $5 billion. "
  
  I find that a real eye opener and an indication that the pinkwashing should end and we should just give the money to breast cancer research instead of buying all the pink crap.
 

That's enough thinking for today. Now I have to get ready for work.

And who is in charge?

I believe if it has anything to do with my health, it should be me because it is all about my body. But unfortunately that pesky cancer crap has a way of messing things up. At a cancer diagnosis, you get all kinds of new doctors - mostly oncologists and surgeons - and they come up with a plan of treatment which generally consists of a mixture of surgery, chemo, radiation, and adjuvant treatment (which is a fancy term for Tamoxifen or systemic treatment). This gave me a medical oncologist who is in charge of chemotherapy and adjuvant treatment, radiation oncologist for radiation therapy, and surgeon for surgery. I am still seeing them all. I also have an endocrinologist who I see annually for that other cancer stuff. But for how long do I get to see them all?

There is no standard plan for seeing doctors for follow up after cancer treatment as a rule.  It can be very confusing. The hospital I go to has some standard protocols which help. But if you get your care from multiple medical offices/centers, it can be confusing to the patient.

I was told by my medical oncologist that she wants to see me every 4 months while I am on adjuvant therapy - which is currently the generic form of Femara - until early 2013 and then probably for a bit after that but less frequently because of bone density issues. I see my radiation oncologist annually but will ask her at the next visit for how much longer. That will be four years since the end of treatment. I was also told my surgeon will be the one, or his nurse practitioner, who will order my annual mammograms with a follow up appointment with the NP for life. (This is the annoying part because they always screw up the scheduling and some how make me feel like its my part but that's another post.)

I also see my endocrinologist yearly to have my thyroid levels checked and the standard is an ultrasound every five years. I didn't have an endocrinologist for a long time. Then the standard of care changed and I ended up back at one a couple of years ago (and then there was THAT ultrasound, blah, blah, blah). I will see her for life as well.

In addition fit in a PCP who is currently following me every three months and a pain management doctor for life and the knee doctor and a dentist, etc. You get the point. I see lots of doctors. Some of them will never go away. I realize that but it would be nice to reduce the frequency of visits. Can I ever ditch oncologists and surgeons and turn my care over to my PCP? I am not sure. I think in another year or so both oncologists will be things of the past - I hope. I am stuck with my surgeon for now. I may develop an exit strategy but I am on the fence. They are my last specialized breast cancer care.

I guess I want to be back in charge of my medical care. Can it ever  happen again? Or maybe I just need to ditch a few doctors so I can stop going to all these appointments.

What kind of doctor?

So who gets to be called doctor? When I hear the term doctor in a medical setting, they damn well better be a medical doctor or psychologist - someone who can make me better. I know there are lots of others in the medical world with a doctorate but they aren't medical doctors. These include nurses, physical therapists, and more.

I find the use of the honorific doctor to be overused. I think professors can use it or other people who promote education, learning, science or things like that. One of my aunts and two of my uncles were professors. We never called them doctor.

But in the business world it can be over used. I worked for a scientific instrumentation company in the 1990's. It was full of people with doctorates. Only a few bothered to use their title. Some of them put their degrees on their business cards. Most of them could have cared less. There were a few (egotistical) co-workers who were royal pains as a result. One of them was a jerk. Another one had two doctorates and a law degree. We called him doctor-doctor-lawyer-a*****e because he was such a pain in the rear end. On a slightly more humorous note, one coworker with a doctorate in physics said to me he used to be cool even though he had his PhD. I offered him tape for his glasses. And according to HR, the more education people had the less they could understand the health insurance policy. HR had to explain it to their spouses. And their lack of common sense could be astounding compared to their level of education. But they were nice people who were very smart.

In the medical world, I know there are lots of people who are required by their positions to have their doctorate but that doesn't mean I am going to call them Dr. Their job title is not a doctor of anything. Their job title is nurse, physical therapist or whatever.

Its all about attitude

Attitude is everything. Well there is a surprise. We already knew that part but now a pair of doctors has written a book about how our attitudes about medical issues factor into our medical treatments. Their theory is that there are three dimensions of values toward medicine:

- minimalist to maximalist - how much treatment do you want - as much as possible to get rid of everything you can, another prescription to help in prevention, and another specialist to check to be sure. Or do you want as little as possible to maintain quality of life?
- Believer vs. doubter - do you believe in the power of medicine and how much your doctor can help you? Or are you skeptical on how much you can be helped?
- pro-technology vs naturalist - medical advances and treatments vs. natural homeopathic supplements and raw veganism?

Its your body and you are entitled to your decisions on your treatment. The more comfortable you are with your treatment plan the more likely you are to follow it and have faith in its ability to heal/cure you.And the fewer regrets you will have if it doesn't work.

What you need to do is to make sure that you communicate with your doctor on your values in the three areas. How much treatment you want, how much technology, and how much faith you have in the ability to make you better.

I talk to my doctors and tell them what I think. I don't want more prescriptions. I am sick of tests. I have gotten to the point where I am ignoring the little medical crap and focusing on the big picture. I am focusing on the things that might actually get better or can be easily made to feel better.

I think I am moving from maximalist to minimalist, lean toward the believer side but can be skeptical, and believe in technology but incorporate naturalism as well. But I am comfortable with this mix.

I am digging my way through the layer of pink

I just got back from a weekend away and sat down to read the Sunday paper. The paper was fine. Even interesting. It has the latest news (as of last night) which is fine by me. I feel caught up and educated after being out of touch.

Silly me, after going through the paper, I decided to see what coupons were available (because I am cheap). That was a mistake. Everything was pinkified. I could bake, do laundry, eat cereal, bread, drink juice and I can't even remember all the rest for the cure. Oops! I can't say anything is 'for the cure' because it has been trademarked by the Komen marketing machine. But you get my point. It is pinkified. Life is pinkified.

I like the color pink which is why my blog is pink. My blog is not pink because it has anything to do with breast cancer. My blog is pink because I like pink. I own lots of pink items - including a pink (official MLB gear) Red Sox hat. I currently have pink nail polish on my hands. I am starting to dislike pink because of the pinkification of breast cancer 'for the cure'. I think I might have to change my blog. Maybe I'll find another favorite color. I used to like yellow a lot. Maybe that's next.

But this pinkification is ridiculous. I think it throws a layer of paint or ink on a not so fun ailment. But cancer is not about pink or paint
or shopping with the politically correct color to send $1.00 of every $10  you spend to find a cure/more research or whatever. Cancer is about people who are living and coping with it. Cancer is not about pink.

Anyway, I will dig my way through a layer of pink this month and see what I can do for the cure at the grocery store.