About That Positive Attitude

Having a positive attitude with a bad diagnosis can be like putting lipstick on a pig.

The pinkification of breast cancer includes that perky little attitude with perfect make up and a big smile. Sorry but some days I just don't feel that way. I read this article about how the positive attitude requirement of breast cancer or other icky diagnosis can lead to a feeling of guilt. Um, yup.

Cancer (and other icky diseases) bring a whole range of emotions and some days, especially during chemo, a positive attitude can be fleeting. Or just not there if you are working on keeping your lunch down again. And after treatment its the same thing. And, as I said, its not just with cancer, but any crappy diagnosis, a positive attitude doesn't always happen.

I can tell you that my positive attitude can be virtually non-existent many days. Sometimes people ask me how do I do it. I think what are they talking about? I am just going through my life and putting one (aching) foot in front of the other (aching foot). Please don't tell me you are amazed by that. I'm not amazed. I'm just getting through my day.

The ever knowing 'them' tell us to keep our positive attitude. It will help us get through treatment better, prevent depression, and make us better people. Well, lah-di-dah, I try but I'm not going all out.

And if I am so happy and perky, what happens when I lose a friend or my next scan isn't as hoped? I'm not going to be so perky am I? And maybe I'm not going to be so happy. I might even feel a little guilt about my lost friend. And more guilt about a bad scan. What did I do wrong? Why did this happen to my friend?

That so-called required positive attitude can be a pain in the butt. I know it takes drugs and therapy to get through life sometimes.

Being positive

My  mother said to me yesterday that I always sound more positive in person than in my blog. I try to be positive all the time. But sometimes its harder than you might think. And that is why I have my blog - for venting. You may think there are other purposes but really I blog to vent. A friend sent me a long email yesterday to vent about her health and I suggested she start a blog.

But being positive can be like putting lipstick on a pig. You try to make it through the day with a smile but the smile can be harder to maintain as time moves on. Until you get to a point where you just say the hell with it and start telling the truth and the smile just disappears until a good night's sleep or pain pill kicks in.

Then there is the continued effort to live with the expectation that the next medical appointment will not bring some 'interesting' news.

My next doctor appointment is in a couple of weeks with my endocrinologist or the 'thyroid cancer doctor follow-up'. Last year's was very stressful, partly due to the ultrasound people who demanded new scans without telling me why and an idiot nurse who 'forgot' I was sent back to ultrasound. I am not sure how I feel about this year's. 

I can try to see about being positive and will keep lipstick on the pig for a bit. For now, until something changes.

Attitudes are everything

Through the medical roller coaster of a cancer person's life, what is the one thing that gets you through it all? Your attitude.

That's easy to say. Some days, my attitude can seriously be slipping. for some silly reason it can be affected by those minor things like pain and distress levels.

So how am I doing? Middle of the road someplace. Exhaustion yesterday which lead me to stay home from my aunt's 80th birthday party. Annoying not-ingrown-but-still-infected toenail that has me on antibiotics and off methotrexate. And if it does not respond to the antibiotics, they will have to cut it open... Ick. And my back is killing me.

But none of this is cancer so I will stick a cheery smile on my face and suck it up while I dream up some yummy dinner that will preoccupy me this afternoon.

If you were told you were at high risk of getting cancer, what would you do?

So genomics is progressing. The newest research shows that through genomics they can account for the causes of 50% of breast cancer cases. They also state that if you are at high risk, you can lower your risk by maintaining a healthy lifestyle - good weight, not smoking etc.

"When researchers looked at the top 25% of risk scores, they found that these would account for about half of breast cancer cases in the future. Using previous models, genetic variants could account for only 35% of future cancer cases...."

"The model found that lifestyle factors, which are in a woman’s control, can generally lower the genetic risk by half. And the higher a woman’s genetic risk, the more she can reduce it with healthy behaviors. So avoiding excessive amounts of alcohol and smoking, or maintaining a healthy weight, for example, can bring a genetic risk of 30% down to around 15%, while a woman with a 4% genetic risk of developing breast cancer can reduce her risk by 2%."

So those statements beg a few questions.

1. What would you do if you were told if you were at high risk of getting breast or any other kind of cancer?
2. Does the high risk seem as much of a concern if you can lower it by maintaining a healthy lifestyle?

Other research has talked about what you do at a younger age can impact your cancer risk later. But do teenagers really care about healthy lifestyles? The teenagers I know often eat a lot of junk food, drink soda and other sugary drinks, and are not as concerned with getting a healthy meal three times a day. Then twenty-somethings seem to switch to some healthier habits as they mature and settle down. College is a big time for alcohol consumption and other risky behaviors. In recent decades the rates of teen smoking are way down. I know these statements are generalizations and there are exceptions but I am using them to make a point.


So if you knew at 15 that you were going to develop breast or any other cancer at age 50, would you change your lifestyle?  Or at 15 are you less concerned with cancer and more concerned with being a teenager and getting in to college?


My opinion is that at 19 at my first cancer diagnosis, I was somewhat concerned with how long I would live, accepted the fact (eventually) that I was at higher risk of another cancer, and that I was going to live my life as I wanted.

When I was at the end of my treatment - surgery and radioactive iodine - I was told to live a healthy lifestyle and not to take unnecessary risks. My thoughts were summed up as I would rather live my life as I wanted than sit around waiting for another cancer visit. I did eat relatively healthily but I also traveled a lot, drank alcohol and smoked (yes!) cigarettes.

I don't really want any predictive modelling done on me, any more than a friend of mine could get me to go see a psychic. I'm happy with my life, I wish I was healthier but I can't undo the past.

Staying pink means staying positive

This has now been decoded. I don't think so.

Fellow blogger, Katherine O'Brien, wrote to Good Morning America recently about the pinkification of the set and show, which I think was Monday but I could be wrong. She asked about why there was no mention of metastatic breast cancer and it was all about awareness. They wrote back:

"The focus of today's report was breast cancer awareness and the visual affect to highlight the need for more research."

"A patient's positive attitude is beneficial in any medical process."

We are supposed to think positive and the world will be full of sunshine and roses and kittens or something.

Katherine made a great video on this which due to my technical skills I can't upload here that you should watch as she does a wonderful job in making her point.

Pink doesn't help. And the TV station needs sensitivity training.

Its not the patient's fault

It is never the patient's fault [unless their ailment was preceded by vast quantities of alcohol and the slurred statement of 'watch this!']. So why do people persist in being so insensitive to sick people? And then there are the people who know what you need to get better even though they never went to medical school. Or their religion will solve your problems.

"You have lung cancer, how many years did you smoke?"
"You have breast cancer, didn't you get your annual mammograms?"
"You just need to exercise and eat better and I'm sure the first 100 pounds will easily come off."
"You didn't pray enough so of course you got cancer." 


Whatever, if you have the ailment you find this all rude, insensitive, and sometimes worthy of a public bashing (e.g. Facebook slam).


But do you expect to run into it from practitioners of alternative treatments as well? I have from my accupuncturist. But at the same time she didn't understand the ramifications of my ailments. She would also ask when my lymphedema was going to resolve itself.

One person in this article is asked by their reflexologist after prostate cancer surgery - what did you do to bring this tumor on? And you hear the stories about someone passed away from cancer - and it is implied that they did not fight hard enough.

Sick people are people too. They may be going through a bad time in their life but they are still are people with feelings and sensitivity - and may be extra sensitive because they aren't feeling well.

Its not their fault.

This is a blog about cancer after all

I realize this is a blog about cancer and living with a cancer diagnosis. but sometimes I don't blog about cancer. Well, I do have lots of other ailments to blog about. And I try to ignore cancer so I'm not living in cancerland where its all cancer all the time.

But it does loom in the background of my life often. Well, almost constantly. Its hard to make it go away. I am ignoring it. I have one of 'those' appointments coming up that I am really trying to ignore. Its one of the appointments where there are negotiations, watchful waiting and discussions on what to do next.

I have no new cancer research to write about now. I can poke around and find some - maybe later this week. I have no pinkification to whine about except this is the time of year for recruiting for all the pink walks. I skip all those commercials. 'I can walk sixty miles for someone who has cancer' and all that cutesy crap. You won't ever catch me in one of those walks. More power to anyone who chooses to do them.

One extra benefit aggravation of developing ailments which cause pains around your body is you can take your mind down that evil road to cancer hell very easily. With cancer, you need to be aware of your body and look out for aches and pains that don't go away and linger. Well with my new ailments, RA and fibro, you have ailments which cause aches and pains that don't go away and linger. I tell myself they can't be cancer because I can blame them  on RA and fibro.

I try to ignore them and live my life on the edge of cancerland as much as possible.

My Attitude Needs an Adjustment

I have been thinking (which we all know is not a good thing) recently and wonder if I have turned into a 'poor me'  person - the bane of all patients. The next step might be hypochondria - which we really do not need.

So  my medical life has been in a downward spiral for some years now. Its now at the point where my doctors have said to me 'you have been through a lot'. Most of my ailments have been ones I have dealt with, tightened my belt and moved on. But this rheumatoid and fibromyalgia stuff seems to be getting to me more than other ailments.

I have met all my personal medical requirements:

1. I can't have an ailment that I can't spell or pronounce. 
2. I have a treatment plan (for RA so far but not yet for fibro as they need to treat one first and then the other so we can tell if its working or not but there is a plan afoot for fibro as well).
3. I have educated myself on both and joined online support groups.
4. I will attend a monthly local chronic pain group.
5. I can joke about it.

But I am not feeling my normal perky self. I went to a party Saturday night hosted by an old friend. By 'old' I mean since junior high. She has had rheumatoid since 2005, which is about when my health started its downward spiral. She very rarely talks about it. It is basically under control. She gives herself injections (something I am not sure I could do) and has been on a variety of medications. She doesn't seem to let it bother her as much as mine bothers me.

Before her party started, we managed to have a few minutes to talk about it. She said it took two years to get a diagnosis because she also had Lyme disease when her RA started. But she now really feels fine.

I decided I am jealous that she is in control of her RA (and still weighs the same that she did in high school). But two years to get it under control? I'm not sure I'm up to that.

But I digress. As I drove home from her party with my husband, I started to think. We left somewhat early because I got tired and was in pain. My friend and her husband were all going strong. I wanted to go home and go to bed.

I spent most of Sunday being lazy because I didn't have the 'oomph' to do much. While being lazy, I decided my attitude needs some adjustment so I can have more fun in my life and be perky again.

Attitudes can be slow to change

I had a conversation with an older friend the other day. When I say older, I mean she is probably ten years older than I, which isn't that much as far as I am concerned. But what was interesting is we were discussing another friend who's spouse has just been diagnosed with a late stage cancer. They are still learning the details of the diagnosis and establishing a treatment plan so its very early in the process.

What made me think was the first friend's attitude to cancer. She still views it as a death sentence. She said something along the lines of 'when I hear cancer, I just know it won't be good'. I tried to tell her that I know numerous people who have lived with a cancer diagnosis for decades. She was pretty set in her opinion. I don't think it is related to her age.

I really thought the world had changed in respect to cancer and that people no longer see it as an immediate death sentence. I guess that is what I found so disturbing.

The 'poor me' attitude

With all my ailments (but I really am a healthy person) sometimes its hard to avoid the 'poor me' attitude. I hate using all those words like surviving, battling, fighting, blah, blah, blah. But some days nothing goes right. There can be one of those fun medical adventures with the wrong results or something new decides to crop up or return or I simply get up on the wrong side of the bed so to speak. (Which one is the right side and which is the wrong side - I have never really understood that one).

Anyway some days its hard not to get dragged down into the 'poor me' crap. I do not use the oh-so-insensitive terms of survivor or warrior or whatever. I am a person living with cancer and a bunch of other medical ailments.

This poor me business can also be helped along by the 'well intention but clueless' who ask things like 'and how are you feeling today?' or 'what does your doctor say now - are there any new treatments?' or 'I would have thought they would have cleared that up by now' or 'will that never resolve on its own?' I try to avoid those people.

I know people mean well but sometimes they really do not understand at all. I have many things which cannot be fixed - lymphedema, back pain, bursitis, two cancer diagnoses - that I am stuck with so you don't need to remind me thank you. Your poor attitude is infringing on my life. May be its 'poor you' instead.

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.

Its all about attitude

I think your attitude going into something greatly affects the outcome, particularly your enjoyment. Its no different with cancer. When I was diagnosed with breast cancer, I was very upset/depressed/stressed for some time. Then I decided since I was lucky enough to have cancer twice, I need to make the best of it.

I have many cancer friends, some in person, some on line, and they range from stage 0 to late stage IV with the end in sight, and are anywhere between just diagnosed to 25 years out (I never seem to meet anyone who is 30 years out from a diagnosis like me but maybe I was precocious or something.) Their attitudes range from 'I don't even think about it' to 'I'm doomed'.

I think I went through a phase of partial 'I'm doomed' for a bit but then got past it with the help of support groups and therapy. Now I think if I got lucky a third time (and its third time is a charm, not three strikes you're out), I might experience a short term of 'I'm doomed' but would not let myself dwell on it.

Cancer doesn't deserve to suck all the life out of me. Cancer people can have fun and, in fact, deserve to have more fun than just about anyone else. Cancer isn't worthy of anything but disdain. Its not worth hating and its not worth dreading because it is not worthy of any wasted effort on your part.

I have to say I am lucky enough to have cancer because I can't think of it any other way. I can't let it take over my life. I can't let it suck me down into a cloud of despair. I have to go through life looking for four leaf clovers, lucky pennies, and the pot of gold at the end of the rainbow. Maybe cancer made me an optimist.

Putting cancer in its place

Recently, Sidney Harman, the 92 year old executive chairman of Newsweek, died of Acute Myeloid Leukemia or AML. Prior to his death he wrote a column on his cancer. He requested that it go stay in the corner as he was too busy to deal with it.

Many people let their cancer diagnosis dominate their lives while they are in treatment. Mr. Harman suggests this is wrong. He was too busy living to have time to let it get in the way of his life.

I think he has a good point. I was told a breast cancer diagnosis is a year out of your life and then you go back to 'normal' (whatever that is) and get on with your life. Many people drop everything in their lives and deal with their cancer and its treatment. Why do we do this? Is this the fight or flight mentality? If you have any other medical issue, do you put your life on hold? Is it because of the connotations of the word cancer that make us drop everything?

Cancer is not worthy of our fear, nor is it worthy of our life's focus. There is a lesson to be learned here, life is to valuable to have it neglected because of a diagnosis. Cancer should go sit in the corner. We need to focus on living and enjoying life.

Some news I can use

Here's some news I can use 'Living Well Could Quash Cancerous Tumors'. Now it was a mouse test and the mice were giving scientifically induced cancers and then some were given an enriched mouse life which means toys, play mates, hiding places, and exercise wheels. So there are a lot of points of contention here:

- mice vs. people - would people react the same? Lots of things never get past the mouse test but this isn't an FDA treatment being tested but a lifestyle change that people can do on their own.
- scientifically induced vs. naturally occurring cancer - would the cancers react the same? Cancers in different organs respond differently to different treatments
- a rich life for a mouse vs. a rich life for a person - there is a big difference here. But if it is defined as getting out a doing things as opposed to sitting at home and feeling like crap by yourself vs. going out and seeing friends, getting exercise, doing things you enjoy (crafts, hobbies, etc), I'm all for it.

Actually this is the biggest point to me. With cancer, I see no reason to take time off from life and sit at home and feel sorry for yourself or just sit around and do nothing. There is no reason, even during treatment, that I don't think the patient should stop doing things. A friend's husband is in treatment for colon cancer, and they keep spending as much time at their summer place as they can. Why not? They would anyway - and its on a lake so its much more fun than suburbia. As long as he is around for chemo and follow ups, why not have fun?

Having been through cancer crap twice now, I think if it ever recurs, I will create a plan of action of what things I am going to do to have fun (between surgery, nausea, and chemo). Why not? I guess my plan is to keep on living my life and having fun and not letting the pesky cancer crap interfere.

Anyway, as I continue my attempts to have a rich life, today I am off to work again and my Friday afternoon will be so much fun as I have a meeting scheduled to start at 1. I am sure it will go for a couple of hours. I hate Friday afternoon meetings. Last night we slept on the futon again. Aside from waking up in the middle of the night with a leg cramp and at 4 am with back pain it was just fine. My leg still hurts and i moved up stairs to our comfy bed and actually got back to sleep for an hour or so. But I am in just ducky shape for the day. Perhaps I'll be whiny too. But it is Friday and we actually have some fun plans for the weekend.