Patient vs Doctor

I often write about what its like to be a patient. Well, not just often, more like all the time. Why? Because I am a patient who is a frequent flyer at the local hospital. Sometimes I know more about the hospital than its employees.

As patients we go through our medical adventures and misadventures and move on. That nasty test is over. The bad results are digested and a treatment plan comes along. We have our emotional highs and lows and we keep on going.

We hear about the potential risks and problems at each treatment. We hope for the best and sometimes cope with the worst. We develop ways to cope and move on and grow.

But what about the doctors and nurses and other medical professionals? I have never really stopped to think about them and how they cope.

First of all in their jobs, every day is like Groundhog Day. They must deliver good and bad news, administer tests and watch their patients react. They help cure and heal some patients, and are forced to watch others slip away. That must be incredibly difficult. It must represent a failure for those who took the oath to 'do no harm'.

They work hard to help their patients and then some they can't help. So what is your job? Engineer, cook, parent, soldier, butcher, baker, candlestick maker? What if what you make is a total flop? How does that make you feel? But what if its not just a flop but someone loses their life?

And what about the further burden of a patient who follows their advice to a T and still doesn't make it?

The emotional toll must be incredible. I could not imagine. And I had never ever thought about it until I read this article on a doctor who writes prose and poetry as an emotional outlet to cope. That's not that much different from being a patient.

The hanging sword over your head or embrace each day

I read an article this morning on how a cancer diagnosis changed a couple's perception of life. Without a cancer (or other icky) diagnosis, do we view the definitiveness (yes that's a real word - I had to look it up) of our lives differently than with one? Does the hanging sword called cancer, redefine us, or how does it redefine us?

I struggle with this one sometimes. I was barely an adult (19) when cancer first dropped into my life. Therefore I am not sure I would know how to be an adult without cancer. But have I learned to embrace every day for what it is? I'm not sure either.

I do agree that once cancer appears, life in Cancerland is very different than life without cancer. At my second diagnosis I was pushed deeper into Cancerland than I was before. So as I was pushed in deeper, I pushed back and focused on taking better care of me emotionally. I was more sure of what I was not going to let cancer do to me again - it was not going to take any more fun out of my life. Or suck any more time emotionally from me.

Now almost 9 years from diagnosis number two, do I still feel that hanging cancer sword over my head? Yes. But I feel I have pushed it up higher and further away. Has it changed me? Yes, and I hope I am a better person than before.

After my first diagnosis, if someone I knew also knew someone with cancer, they would somehow get me in contact with them. I didn't always feel comfortable talking to someone I didn't really know who had cancer. Because I had cancer, I was supposed to want to talk about it? I didn't. And that wasn't the best way to cope with my health.

Now I reach out people I meet with cancer, because I don't want anyone to go through all the same hell I went through. I want to help them push that hanging sword further away. Let them embrace their life and not live under that sword.

From the article I read:

"The gift of the diagnosis — and it’s a tough one to embrace, but what choice do we have? — is to dedicate ourselves instead to embracing every day with the particular passion that comes from knowing the number is finite. I am just as glad I don’t know the number of days remaining to either one of us, but I know every day, I have one less. I had better make the best of them all."

The Biden Moonshot to End Cancer

I have not thought much about Joe Biden's moonshot to end cancer. But it is increasingly being covered by the media and I am learning more about it.

I have a few thoughts of on moonshots. Or long shots. Sometimes they do come through and create interesting and exciting results that might never have otherwise been discovered. But many of them just become another long shot that didn't work.

However I do appreciate the fact that a new effort is being made in this on going effort to try to find a cure for cancer.

I also do appreciate the fact that this new effort is working on new angles. one I heard of most recently is using the huge database at the Mormon church to research cancer cases. I hope they leave no stone unturned in their efforts.

You can't put a dollar value on life

The latest news out of the pharma industry is that they want to put a dollar value on a month of life. I do not think this is possible. But they want to so they can continue to justify their high priced medications.

I think many people when faced with the knowledge their life is about to be cut short would do anything or pay any price to be able to stick around longer. I am sure I would, unless I was in horrible pain or had no quality of life.

To start with how would you figure out the monetary value of life, or a month of life even? You can look at the basic necessities - food and shelter - or lost salary, or medical costs to keep someone alive. But what would that mean? I just don't understand this concept.

And to try to pull a number out of thin air to justify the cost of a medication is nonsensical.

Logical pricing comes from cost to design and create and throw in some supply and demand. And the pharma industry's way of a putting development costs from multiple drugs that didn't work out in to the development costs from a new drug and pulling a number out of a hat for perceived value for the basis of pricing, doesn't really work. And always end up in their favor.

I could never put a value on my life. Its not something that came with a number on it. So let's not try to create something that doesn't exist.

I had the wrong question

I was going to ask my rheumatologist if my rheumatoid was in remission. That was the wrong question to ask.

I should have been more concerned about joint erosion and disease progression.

Damn.

So I got to get x-rays and ultrasounds of my hands, wrists, ankles, and feet. I was tired by the end of the x-ray session. I am not good at standing around these days. Particularly while standing in a specific position and not moving while they take issues. All of my feet and ankles had to be weight bearing. That was Tuesday.

Yesterday I went for an ultrasound of my right hand and wrist. I was looking at the images on the screen. I asked the tech how she could tell what was what - the answer was a lot of training. I said the image of my wrist looked like the ocean in an old print of an ocean with a ship.... She agreed.

I will get the results at my next appointment. And then we will discuss additional treatment options. The problem is that the TNF (tumor necrosing factor) which is some how part of the new fancy biologic treatment options. So my rheumatologist has to talk to my oncologist first.

Are You Cured?

While leaving the hospital yesterday, I followed this car out. While rounding all the corners in the parking garage, I couldn't help wondering what they could be cured of, or what it would take me to get a similar license plate.

I do not consider myself cured of either cancer. They are just in hiding right now. Actually, if you can tell me there is not a single cancer cell left in my body I would consider myself cured but since there are no guarantees in Cancerland, I'm not cured.

Also there are no cures for rheumatoid or fibromyalgia, or degenerating disks. So I clearly wouldn't consider myself cured yet.

This lead me to wonder, when do you consider yourself cured? Or at what point are you cured? I mean skip the common cold. You get a cold, you get over it - that means cured. Or a broken bone eventually heals and you are good to go, so that would make you cured. Or is 'cured' the wrong word to use there?

If you have an organ transplant are you cured after that? As far as I know, you are then on antirejection meds for a long time and would require frequent medical care. But does that make you cured? You could have cataracts and then have surgery, are you cured then? That I would think.

Too much to ponder this early in the day. But I do welcome other's thoughts on this.

My doctor confused me

I went for blood work last week for two doctors. As usual I got the results the next day, or so I thought. This morning I got more blood work results back. And I don't understand them.

These are more thyroid blood tests. Originally I got my TSH level back. Then this morning I got T4, thyroglobulin AB and thyroglobulin. I didn't get my T3 levels. I don't always get all these thyroid tests done so I don't understand them as well as my TSH levels.

And why all of a sudden do I get all these blood tests? To be fair, the hospital switched to a new computer system last year with a patient portal where I get my test results directly instead of getting them from my doctor's office or the records office. So maybe they did these tests and I just wasn't aware.

So it means I definitely need to call my doctor about them.... But I'll give her until the end of the week to contact me first.

I think its a vast medical conspiracy to confuse the patients. I have been blogging about this for years. If you can't cure them, confuse them.