TMS Day One

Well, I could never have imagined what it was like.

I arrived promptly at 1:40. First things up were being sure I understood payment and signing away most of my legal remedies. Of course.

The next hour was spent aligning the device so that it stimulated the correct part of the brain, generally in the area over the left front of my head. They’d place the device, let it emit a magnetic pulse and note if my fingers twitched. A small twitch was apparently good. It wasn’t painful, but it wasn’t particularly comfortable. More about that later.

During the alignment, I learned that each treatment would take 40 minutes. The machine would emit 10 (I think) magnetic pulses over about 4 seconds, then there would be about a 26 second pause and the sequence would restart. During the 26 seconds we could talk. I was told someone would be with me at all times during all treatments. Good in case I went into some kind of psychotic rage I guess (just kidding).

Then we started the treatment in “test run” mode to make fine tune adjustments. What a huge difference. At first there was some pain from the pulses that felt like a headache being induced in my head. With some small adjustments they were able to get rid of that, but there was a pronounced uncomfortable feeling running from my upper left scalp down to the tops of my teeth. It’s very, very hard to describe what it felt like. It’s wasn’t painful exactly, but it was quite uncomfortable. They told me what was happening was the magnetic pulses were hitting a nerve that’s connected to the teeth. Some people feel it on uppers only, like me, and other get both upper and lower teeth involvement. When I was done I felt my teeth to make sure they were still firmly in place. They were. My jaw didn’t chatter and my fingers didn’t twitch (that I noticed). I was happy for the 26 second pause and happier to have them to talk with. A soft chord would play aloud before each 4 second set of pulses, so I was never surprised when it started. It did make our conversation a little stilted, but that was OK. The good news is the first day is the worst and supposedly by the end of the first week there’s little to no discomfort. My brain just needs some time to adapt to it.

I asked what’s the soonest I might see any effect in depression or anxiety levels. Two weeks is the absolute minimum, but the vast majority of people don’t notice any effect until they’re 4 weeks into the 6 week program. They also said family usually notices the difference before the patient. In some cases folks get full effect at about 5 weeks and they simply stop treatment.

In case you’re wondering, the treatment is not covered by most insurances and costs about $12K in the Dallas, Texas area.

Was He Always Like This?

Sometimes I wonder what folks who follow this blog wonder about me. One question stands out in my mind, especially among the folks who have known me for decades. Did I always have this much trouble with depression and anxiety? Did I just do a great job of hiding it? The short answer is no.

I’ve had problems with depression and anxiety on a limited basis throughout my life, but for most of my life it wasn’t particularly serious. In fact, it wasn’t until I was in my mid-forties when I first started taking antidepressants and even then I was on and off them.

In 2008, right around the time I was first diagnosed with phase I cancer, my depressions got worse – no big surprise.

In late 2008/early 2009 I had brachytherapy and conformal external beam radiation to kill my prostate and my cancer. I was given an 80% chance of being cancer free at the five year mark, which would be early 2014. Cancer free doesn’t mean you’re cured, it just means there’s no detectable sign of the cancer at a given point in time. In other words you’re going to be tested for the rest of your life. For prostate cancer that meant PSA tests about every six months. I decided I was going to bull through it and everything would be OK. The depressions had little to do with the cancer as far as I was concerned.

Reality was telling a different story. Before long I was officially declared “treatment resistant”, meaning I didn’t respond well to single or multiple anti-depressant cocktails.

About a week before each test my anxiety would start gradually increasing to a crescendo before the test results came back. It became very clear that the disease, which I supposedly, probably defeated, was in fact seriously messing with my quality of life every six months. I thought about ending the testing and letting nature take its course. The doctors talked me out of it. I know now that was a mistake, I should have stopped getting tested, but I can’t change it at this point.

In late 2011 my PSA reading was slightly elevated, we did a bone scan, found some spots on my spine, and that graduated me to a phase IV cancer diagnosis. The only good news is we caught it super early. Even so there’s no hope for remission. All that can be done for prostate cancer is to slow it down. Depression and anxiety-wise I was very lucky that I was just about to start on a new anti-depressant cocktail that worked very well for a month or so. I definitely needed the help.

In January 2012, although I didn’t know it at the time, I was about to make the biggest mistake of my life. The doctors were split on whether I should take an aggressive route and irradiate the spots or follow the standard of care and wait for it to get worse. I was told that if I irradiated, the worst side effect would be mild fatigue. So I decided to go ahead with the radiation. They were terribly wrong, and as I mentioned in the last post, it wound up being a horrible error. If you look carefully at my posts over time, the worst depressions started after February.

And that’s the long answer.

The Other Shoe

It’s my second birthday and Christmas since I was diagnosed with stage IV prostate cancer. Pretty soon it will be the second New Year too.

Last year I wasn’t sure if I’d see any of the holidays this year. We hadn’t established how aggressive my cancer was at that point. Now we’re pretty sure it’s not particularly aggressive, so it appears I’ll likely see a few more Christmas holiday seasons. Exactly how many no one knows.

I do know I haven’t yet come to terms with my cancer, which really means my death. How? When I think about this birthday, Christmas, and New Year, there’s no feeling of being grateful to be able to experience it. Finding happiness, contentment, or peace seeing these milestones come and go is hard. Instead I find myself fighting back feelings of being a marked man wondering when the other shoe will drop – the time when I know my last birthday, Christmas, and New Year are upon me. Then I get concerned about not staying positive enough, that my negative feelings are going to hasten my demise. Fortunately, I’m able to regain control pretty easily, but it’s still unsettling and a clear indicator to me that I have a lot of work to do with this acceptance thing.

There are no surefire ways to get there and that worries me. I guess I’ll just keep pushing and see what happens.

 

Hiatus Over!

We’re back from vacation! We were overseas for almost three weeks. We’ve decided that’s a little too long. It also exposed us to too many cooties on board. Our foursome is now all recovering from moderately severe chest colds. Still, we had a great time.

A few notes from the trip. The top two locations visited: La Sagrada Familia and the Leaning Tower of Pisa. La Sagrada Familia is a Gaudi designed church in Barcelona, Spain. Construction started in 1882 and they hope to complete it in 2025, the centennial of Gaudi’s death. It’s interior is finished and is open to tourists. Photographs are permitted. Without question, this is the most incredible, awe-inducing structure of any kind I’ve ever seen. Before this trip, I had no idea it even existed.

I almost passed on the trip to see the Leaning Tower of Pisa. After all, I’d seen many, many pictures of it starting back in grade school. It’s a skinny tower they built in the wrong place and it started leaning. I never understood why they didn’t jail the architect, bulldoze the tower, and start over. All I can say is there is something magical about the Tower when you see it right in front of you. I took dozens of shots from all different angles and distances to get just the right shot. It was surprisingly difficult to capture what the Tower felt like to me in one picture. To anyone else, that shot will look like just another shot of the Tower, but to me it is the Tower.

As is typical on cruises, the internet access was spotty at best and outrageously expensive. We’re glad to be back in the US and have fast, cheap, reliable access.

I confirmed that jet lag does indeed screw up my system something fierce. I again had anxiety attacks in the mornings, this time the worst I’ve ever had. My wife was great helping me through this. I don’t know what I would have done without her. Oddly enough, by the afternoon, the anxiety was always gone. Part of the problem, I’m pretty sure, is my most recent cocktail is a bit of a step back. TMS in late December/early January is looking more and more likely.

I didn’t have to deal with jet lag on the way back thankfully – ours was a repositioning cruise for the cruise line, so it was transatlantic at the end. When we docked in Fort Lauderdale, Florida we were only an hour off our home time zone!

Stay tuned to Jim’s Pic of the Day for shots of La Sagrada Familia, the Leaning Tower of Pisa, and many others. Note it may be a week or so before they start appearing.

Drugs, Depression, You and Me

I often worry about the effects my posts on depression have. Anyone who reads a lot of my posts has to realize I’ve had a terrible time with depression and antidepressant drugs.

I worry that folks who have depression and have never seen a psychologist or psychiatrist will be less likely to seek help after reading my blog.

I have had a lot of problems, but that doesn’t mean you will. I’m in that group of 30% or so that’s treatment-resistant. The other 70% are far more likely to get relief from standard low cost, low side effect antidepressants and talk therapy. The odds are in your favor. Why not feel better when it can be easily accomplished? The stigma? I hope not. My story? Don’t use me as an excuse.

If you think you have an issue with depression, consider getting a referral from your GP to a psychologist. There are also ministers, preachers, rabbi’s, etc. Your company may even have an Employee Assistance Program that provides 3-5 totally confidential sessions for free (fairly common in the US). That might not be enough time, but at least you’d know if it helps. If it doesn’t appear to help at all, you might want to consider seeing a psychiatrist or your GP to try some of the inexpensive, low side effect antidepressants.

Most people with depression can feel better pretty easily. It’s a crime against oneself, and the people around one, to not do something, IMHO.

If you have cancer or a terminal illness, things get a lot more serious, in my opinion. Depression is very likely. My oncologist offered to refer me to a terminal illness psychologist at our first meeting. I took him up on it. It was one of my best decisions.

If you’re seriously depressed, you may think you can handle it yourself along with support from your family and friends. I guess it’s possible, but I think the odds are against you and it’s a terrible burden to place solely on those other people. Your family is probably almost as likely to need counseling as you do. Then there’s the problem that they’re not trained to effectively handle depressed people. Talk to your GP about it.

One last thought for cancer patients who are seriously depressed. You deserve to enjoy what time you have left as much as possible. I suspect you want to be as emotionally available as possible for  your family and friends for the time you have left. I know they want you to be. There is no time to waste! Talk to your GP about what you might do.