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.