Is it time to rename my blog?

When I first started my blog it was called 'Caroline's Cancer Blog' for a very brief period. Then I settled down with 'Caroline's Breast Cancer Blog' because it was about coping with breast cancer. Now more than five years later, my breast cancer seems to be cooperating and not stressing me out (as much) as it did before.

But now I have all sorts of other medical stressors:

• Thyroid cancer mysteries. What the hell is going on in my neck? We keep repeating ultrasounds and get conflicting reports - bigger, smaller, same size.
• Back pain. Degenerating disks to start with and living on pain meds. 
• Fibromyalgia. This isn't fun. I need to go back to my back pain doctor.

And there's more that I can't think of right now because I have chemo brain (or maybe its fibro fog). I'm tired, in pain, and a touch cranky at times. Also:

• The spell check on my computer includes oncologist, endocrinologist, rheumatologist, and multiple medications. 
• I have a special directory on my cell phone of all my doctor's contact information and have their secretaries' names memorized.
• I see my oncologists less than I see some of my other doctors.
• I feel like I know the pharmacists at the local Walgreen's. 
• The nurses in the interventional pain center where they do injections recognize me.
• I can't fit all my prescriptions on my bedside table and keep them on the shelf in my closet.
• My primary care doctor is happy when she doesn't see me more than every few months.

So my life isn't just about breast cancer any more and my blog isn't just about breast cancer either. I have lots of opinions on lots of things. But I'm not sure I want to rename my blog because breast cancer was one of the first big things that have happened to me in the last few years. It still exists in my life - a cancer diagnosis never really 'slips your mind'. With two cancer diagnoses, when I don't stress about my other health issues I can always stress about them.

Doctor communication skills

Doctors need to focus on their bedside manner and also their communication skills. How hard is it to get hold of your doctor when you need to talk to them? This is important. I realize doctors are busy and they often call patients back after hours, long after dinner time.

A few weeks ago, I met with Dr P to discuss potential new ailments. I liked her and thought she was on the right track. I left all kinds of samples - urine, blood, xrays. Dr P said I should set up an appointment with her in 3 weeks that we could cancel it if everything came back negative. Then I would see her in six months and go from there. She said in the interim she would call me with test results.

A week after my appointment I called her office to find out about the 3 week follow up appointment. She is very busy so her secretary was trying to fit me in. Finally we left it that she would call me with the results and decide then if I needed to come in that soon. She was waiting to talk to the radiologist about my x-rays and hasn't been able to make contact with the radiologist.

Yesterday was yet another week so I called her office. Her secretary, who is very nice, said she would leave her another note. The secretary called back yesterday afternoon in the five minute interval when I was outside. She left a message that they were going to schedule an ultrasound and maybe an MRI as well even though the doctor hadn't made contact with the radiologist yet but with my test results that was the logical next step.

I said to myself 'what test results?' because I didn't have them yet. I called her back and said I had never gotten any test results. The secretary was surprised and gave me my results which are good and bad (meaning inconclusive) but the doctor still wants to talk to the bone radiologist...

The latest assurance I have is that they have scheduled an ultrasound for me in November which may or may not be cancelled and may or may not be followed up by an MRI. The doctor will call me probably Tuesday or Wednesday with results and a plan. I'm not holding my breath. She is a nice doctor and seemed very good but very hard to get on the phone!

A pink-free zone

As I blogged a few weeks ago, my blog is a pink free zone. But people do not  understand this and keep posting comments with links to pinkified things. While I realize some women really like the pinkification and feel loved by all of it, I do not.

First of all, there is no need to paint everything pink for one month for awareness of something that we are aware of. It often looks really stupid.

Second of all, most of the purchases are a total rip off. A tiny portion of the money you spend ends up at your cause. Send a check instead.

Third of all, breast cancer isn't a one month event. It takes over your life forever. Get real here.

So if you are such a fan of the pink stuff, go post links on someone else's blog who likes pink.

I have opinions. Tomorrow I'll blog about my opinion on the S-word.

The cost of cancer care

New drugs are developed which offer hope to many with late stage cancers. You can't really put a price on a human life and some how I think that drug manufacturers know this so they have no problems charging these outrageous prices. One was $120,000 for FOUR doses. Another is $10,000 per month. A third is $80,000/year.

If you are in a clinical trial you get the drugs free. So obviously they can afford to give them away. So if you are paying are you paying for the free ones that went to other people and for all the research costs? I wonder what these cost outside the US. There should be some kind of global pricing standard for medications.

And then for these drugs a success rate of 40-50% is considered good. It means the patients are still alive.

The whole hope is to keep patients alive but if they die bankrupt because of their medical bills they probably couldn't afford much in the last few weeks to enjoy life?

Something is broken here in many ways.

Protection from financial ruin

Why do we have any kind of insurance? For protection from financial ruin.


But the health insurance world doesn't quite work that way.

If a tree falls on your house, you assume your home owner's insurance would cover it. And it probably will except a relatively small deductible. If you get in a car accident, you assume your car insurance would cover it. And it probably will except for a relatively small deductible. If you get sick, you can assume you will end up paying a lot somehow because of what your health insurance won't cover.

That's the key difference. With any other kind of insurance, we assume we will be covered except for a relatively small proportion of the total amount which is why we carry the insurance. But we know our health insurance won't cover everything - they only cover the parts they want to unless you can get a special approval. What is wrong with this system? Everything. It is not designed to protect the patient from financial ruin.

I do not have a solution for this. It is a systemic problem which will require systemic change throughout the health care system.

So what do your doctors write about you?

Don't you ever wonder? You see your doctor, you ask your questions, get your answers, maybe some new recommendations and follow ups, and are on your merry way home. At some point after they see  you, your doctor writes down notes about your appointment. Do you ever wonder what they say about you?

I have had some infrequent opportunities to see my medical records. Partly by happenstance and partly by choice. Some of it is crystal clear and makes sense and some of it requires a decoder ring - that my surgeon provided at the time. I found it interesting.

There was a recent voluntary study (because we need more studies) where doctors shared their notes regularly with their patients who wanted them. They found better compliance with doctor orders among other things.

I know I can go to the hospital where I am treated and get a specific test result for no charge but if I want my full records it will basically cost me $100 for the first 100 pages and then $0.36/page after that. With my  medical file, I'm probably looking at around $1000 for the whole thing. That's just fine. They can stay there.

But I do have a friend who found out what her doctor wrote about her in her medical record - it was something along the lines of 'she will never lose weight because on weekends she drinks a lot and pigs out'. Seriously that's what the doctor wrote. That is now her former doctor. And she got a patient advocate to help in getting that removed from her permanent medical record.

I am sure my doctors write things like "paranoid, chronic complainer, pushy, bitchy, hypochondriac, full of mysterious ailments who uses more than her share of the medical system" in my medical file. Actually I don't think they write that.  I am sure its a very fat file hogging lots of disk space. But most of its probably in doctor speak and I didn't get the decoder ring.

Would a written note at the end of each appointment help my chemobrain/fibro fog memory remember what I am supposed to do and why help me? Probably but I don't need more paper in my life. And I don't want to have to wait until they doctor gets around to writing the notes either.

A new kind of doctor

Doctor's used to be trained to be the super achievers with legendary ego's. They were the super heroes who rushed in and saved people's lives all by themselves. People looked to them as the one to save them.

 

Then things changed and medical care expanded explosively. Its no longer a doctor who treats you but a team of specialists. All doctors became specialists. Even your primary care physician is a specialist. And they probably have a team of nurses, nurse practitioners, office staff and more working for them as do all the other doctors on your team.

Each specialist needs to talk to the other one's on your team. They need to use checklists to make sure that every question is asked, every i is dotted and every t is crossed. All these different perspectives mean more information is uncovered which can lead to better care and fewer mistakes.

As patients who shuffle between PCPs, medical oncologists, pain management, radiation oncologists, psychologists, and more, we need to make sure they are talking to each other and your needs are being met. So you as the patient needs to join the team. Its all about you so it has to include you.