Sunday, May 7, 2017

Health Care and Worry

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I was reminded, recently, that many people don't see me on a regular basis and really don't have any idea how I've been doing. So I thought an update was in order, and I do have some very good news to share. I had a PET scan a couple of weeks ago.  These scans are a little more accurate than my quarterly CAT scans because these measure metabolic activity of the cancer.  If the cancer is very active, you get lots of bright lights in the scan. We want little dim lights or no lights at all.  I'm happy to report that there weren't very many lights in my lungs, and they are smaller and less active than a year ago. The ones on my liver don't seem to be active either. The ones in the bones aren't active at all. The treatment I am on is doing just what we want it to do. It's keeping me stable with minimal side effects.  I feel really good, and I feel so very fortunate.

But I've been reflecting a lot on my health this week as the debate over health care laws have dominated the news cycle.  You see, it dawned on me that I'm the person that this new proposed law is trying to save you from.This very successful treatment I am on also happens to be very expensive.  Crazy expensive. I met my deductible for my insurance in January. Just one of the drugs I get is $8,400 per dose.  Another is $4,600.00 per dose.  I get them every three weeks. That adds up $13,000 every three weeks, and that only accounts for two of the drugs. It doesn't include the doctors visits, the lab tests, the scans, and all the other associated costs.  If you add up everything, my treatment costs about $250,000 per year. It's pretty ridiculous. I could never afford this without insurance.

So long as this treatment continues to keep me stable, I could be on it for years, and, well, you can do the math. It's a great deal for the drug companies. It's not such a great deal for everyone else who has to pay more for their insurance because of people like me. So, I'm sorry about that. I really am. I wish it didn't cost so much. I wish I didn't need it.

I was very angry and worried when I first heard the news because people like me, we don't have very many guarantees that we could continue to get coverage affordably.  People like me could be expected to pay a whole lot more for coverage, if I could get coverage at all. Or I could be priced out of getting coverage or go bankrupt due to medical bills. I didn't get cancer because of my lifestyle. Very few people with cancer do. We can't control our genetics, and we can't control the toxic environment that we live in that exacerbates cell damage.

But then I had to stop being angry.  I had to stop worrying. Falling into the drama created by fear, anger and worry are old habitual patterns that do not serve me.  I have to focus on what I can control.  I had forgotten for a moment that I control my reality.  Although I can't control anything externally. I can control my thoughts and my actions.

I don't know for certain that I will need this treatment for the rest of my life.  I only believe this because I was told this by a medical establishment that does not yet have a different answer. My doctor can't, ethically, make a change in my treatment plan, because there is not enough research based evidence to show that it can safely be stopped. But maybe it can. Maybe someday they will have more answers. I know that my daily exercise and the things I am choosing to eat or not eat make a difference in how I feel from day to day. Maybe those are actually the things keeping cancer at bay. Maybe my absolute belief that everything is OK is keeping me well. Maybe it is a combination of many factors. Maybe our politics will change. Maybe we can figure out a way to make health care fair and accessible to all. Maybe drug prices will go down.

What is disease? Dis-ease. Not being at ease. I could be perfectly healthy in medical terms, but still not be at ease. I am not being so simplistic as to say that, if only someone believes something strongly enough or doesn't ever worry that they will never get sick. But I can certainly make my dis-ease worse by dwelling on the negative and the worry and the fear.

I can't control the external world. Maybe I can't control my biology. But I can control my thinking. I can choose to see myself as a victim of cancer, as a helpless pawn in the politics of health care.  Or I can choose to see myself as a vibrant, healthy, loving soul with something positive to contribute to the world. I can use the experiences of living with cancer to empathize and understand the suffering of others.  I can remember that you and I and every living being on this planet are all important and connected.

I can imagine and dream of a world where we help each other regardless of how much money we have. That's not so far-fetched, is it?





Monday, January 2, 2017

Making Changes



You've probably noticed, I don't write very often.  Motivation and inspiration are often hard to come by when it comes to creative pursuits. It's a lot easier to sit down at the end of the day and play a round of Candy Crush than to face the challenge of a blank page in front of me. It'a also a lot easier to sit down and read than to go for a walk. Or to practice yoga. Or to work on my push-ups. Things that are hard are things we tend to avoid, unless they have become habitual for us.

I'm happy to say, however, that while writing has not become habitual for me, fitness has finally become a priority for me. I now feel a bit restless if I don't get at least a half hour of exercise in each day.  If I don't start my day with a few sun salutations or some form of yoga, it feels a little off. A few months ago, on my birthday, I set a goal to be able to run a mile without stopping and to be able to do 15 push-ups.  The mile turned out to be pretty easy to attain regularly, especially on a treadmill (it's too icy outside for running) and although I definitely can't do them all at once, I can do 15 push-ups in a day too.  My goal on my Fitbit has been to rack up 7,500 steps per day.  Now that seems like it might be too low, and I feel like maybe I should increase it.

It didn't happen overnight though. It was a slow, gradual process. That's how change works. Little changes, over time, add up to big changes. It's a good reminder as we start up a new year and have our many resolutions and goals. It's so easy to grow impatient when the changes we seek don't happen right away, but if we keep at it, we will eventually see results. And if we really pay attention, we will notice the subtle changes each day, and then one day we surprise ourselves by doing more than we thought we could.

I have to keep the same mindset when it comes to my scan results.  While I was super happy to learn that everything was stable, I was also disappointed that I didn't see reduction.  My goal, you see, is for my scans to show nothing. NEAD - No Evidence of Active Disease. It's frustrating to me that I'm not there yet. I'm already taking advantage of everything Western medicine can do with my Perjeta and Herceptin treatments, so now I'm exploring other healing avenues as well. I've changed my diet even more. I've changed how I exercise, and I'm changing how I think. I'll share more about all of those changes in future posts, but the bottom line is that I'm making lots of changes. I'm also trying to stop giving a set of scans so much power and start to reclaim my own power. After all, does it really matter what the scans say?What good is a clean scan if I feel lousy? How I feel is what really matters in the day to day.

And I feel pretty great. I hope you do too. If not, I hope you can see that you have the power to effect change in your own life. I will not sit here and pretend that it is easy. It's not. Some days I really just want to curl up by the fire and not go out in the cold for that walk. Some days, I really, really want to eat that chocolate covered doughnut. Some days, meditating for 5 minutes feels like painful hours. But I'm learning that it is the hard things that make us grow. It's the challenges we overcome that make us feel strong. We just have to stay focused on the direction we want to go and keep trying and keep on doing the hard work.

Change does happen. Things do get easier. We do get stronger. We just have to decide to do it.