The Silent Disease That Is Crippling Us

There’s a word we all use when talking about health that is descriptive but may have strayed from its original meaning. The word is “disease.” Most people think of disease as a pathological illness. “He has a terrible skin disease,” or “she has advanced breast cancer.” These are pathological conditions. But the word can be parsed differently. The prefix “dis” means “not.” The word “ease” means “without difficulty.” Thus “disease” is a distinct lack of ease. Everyone can experience a lack of ease that is not pathological but is related to their health. A common example is stress. Excess stress will have a negative effect on a person’s best possible health outcome. You can read my book to explore this relationship in greater detail.

There is a specific source of disease that troubles me. This disease is the extreme stress caused by healthcare and insurance organizations based on how they charge patients for services. Extraordinarily high prices for services and drugs may not be covered by insurance. Even with very good insurance (which is expensive) there are instances where claims are simply denied. In either case, when the healthcare providers are not paid they look for payment from the patient. The patient is trapped between two organizations over which they have no control. Not everyone is capable of grappling with insurance companies and healthcare billing organizations. If the bill is small, the patient may just pay it, but the personal circumstances of patients vary and there are patients who simply cannot pay the bill. How bad is it? Only 45% of Americans have $1000 stashed away for emergencies. If the bill is bigger, or the patient has no emergency funds, they may have trouble paying rent, buying groceries, or even continuing with medical treatment if the condition is chronic. The healthcare provider may send the bill to a collection agency, at which point the patient is under regular assault from heavy handed debt collectors. In fact, medical debt is the single biggest cause of personal bankruptcy. One can only imagine the amount of stress this causes, and that is the threat that works against the patient achieving their best possible health outcome.

It's ironic that so many pathological diseases can be treated or cured, and yet the very same people who provide these services have given you a new disease. They are the cause of this disease. They are singularly responsible for this disease. It’s the one disease that they can wipe out completely in every case, and yet it goes untreated. There are so many brilliant medical researchers and practitioners who drive healthcare forward (and are well funded), but the business practices of their organizations are stuck in the dark ages.   

I’ve gotten a taste of this in my own experience. The doctors who treat me work for a large, prestigious medical center and are generally unaware of how billing works. I’ve begun to explain this to them and they’re often shocked or horrified. I gently remind them that it’s their job to advocate for their patients. It’s horrible to do this because I really want those doctors to excel and they shouldn’t have to be distracted by business problems, but this is where we are. Where are the business innovators? I wish I had an answer for that.  

 

 

 

 

 

 

 

 

 

Done With Treatment (For Now)

I wrapped up the radiation treatment yesterday. So far I have no side effects, although I'm told to expect some fatigue for a week or two. I am regularly fatigued, mostly from a different illness and a procedure that was done in 2018. That fatigue goes up and down, so it's hard to tell if something new is in play. There may also be some bowel issues, but so far everything is good. 

This most recent prostate problem started back in January and has been sucking up time with multiple appointments and the stress of sorting out the most appropriate treatment. I'm happy to have it in the rear view mirror (for now). I also had shoulder surgery and rehabilitation concurrently. That's over now too. During that time I finished my book and got it launched, although I've dropped the ball on promotion due to health priorities. Now my intent is to get busy with fitness. Especially cycling, which brings me a lot of happiness and is a good metric for strength and endurance. 

What's the plan for the prostate cancer going forward? Well, I get a reprieve for 3 months and then there will be a PSA test. The hope is that the PSA has dropped below 2 and stays there forever. If it doesn't drop to 2 or it starts to go up again, there will be consequences. The next course of action will most likely be drugs to suppress testosterone levels. Worrying about this would be telling myself a bad story, so my concern is suspended until further notice. 

Soaking Up Some Rays

The first two sessions of SBRT are complete. From my perspective it's the easiest thing in the world. I walk into a room, lay down on a table, slide into a machine, and get my dose of radiation. Due to the location of the target I don't even have to take my clothes off, I just pull up my shirt. It's absolutely painless and the machine barely makes any noise at all. Fifteen minutes later I'm on my way home. 

But then there's this...  I know what that machine does and a little bit about how it works. I know that when it's running there are high energy photons passing through my body and damaging everything they hit. The target is like the axle of a wheel. The beam moves around the target, blasting it from multiple positions so that the non-target areas never get the full dose of photons while the target does. The plan is to kill off the bad cells and spare the good cells. But if I move even a fraction of an inch while I'm in that machine, does any part of the invisible beam miss the target and hit healthy cells? How good was the targeting in the first place? How can you not think of this thing as a "death ray?" If you let your mind run away with itself some creepiness can sneak in. Cold. Industrial. Remote. Ominous. Best not to linger on these thoughts. Gotta have some faith in the system. 

There is one small technical thing that bothers me. In the treatment room there are warning lights, one red and one green. When the machine is off (not emitting radiation) the red light is lit and says "beam not on." When everyone leaves the room and you're on the table, the green light comes on and says "beam on." Why? I'm the guy on the table. It doesn't mean anything to me. I expect to get blasted and I don't move until someone comes into the room and says the session is over. But if I worked in that room all day I'd want to know that the beam is off when I'm in there. A red light universally signals danger. I brought this up to one the radiation techs. She said that the warning lights outside of the door are the opposite. If there is a red light they don't go into the room (I'm going to guess that there are safety interlocks on the doors anyway). Is there any logic to explain this? Is it possible that the people who installed the lights mixed them up? Stay tuned...

Confirmation And Schedule

As planned, I met with my radiation oncologist on June 27, discussed the details and the risks of the procedure, and signed the consent form. Twenty minutes later I went through the set up process on a specialized CT machine and got a couple of new tattoos for alignment purposes. The treatment dates are set (July 11, 12, 16, 17, 18). Now the game is to stay healthy and positive for the next 3 weeks. I'm in the groove and ready for it. Everything is good.

The Medical Oncologist Weighs In On The Treatment Plan

Yesterday I had a meeting with my medical oncologist to talk about the role of drugs in the treatment of prostate cancer. You can spend all the time you want reading peer reviewed research papers and listening to smart and accomplished people working in the PC world (and you should), but there is nothing like a face to face with a doctor who knows you. There are two big takeaways from our conversation. First, regarding treatment approaches, the doc said that there are a lot of data and a lot of protocols, but instead of applying them blindly it's better to form a plan for "the man in the room" based on that man's specific circumstances. Second, my desire to avoid androgen deprivation therapy (ADT) at this time is acceptable to him and he supports the treatment plan. He mentioned that newer technology like SBRT is showing tremendous value in individual cases, but it will take years to collect enough data to change the standard of care. I mentioned this in my book. Take survival statistics with a grain of salt, because to analyze something like  survival rates over ten years requires ten years worth of data. The best treatments for PC ten years ago have improved considerably. This is the same with many other cancers and diseases other than cancer. 

I feel good about the meeting because the doctor that I know and trust supports the plan, confirming that my choices are not mistakes. I also feel privileged to have such a solid team of doctors and healthcare professionals looking after me.

The Process Moves Forward; Consent and Set Up Session

I now have an appoint for June 27 to get the radiation treatment program started. At 10am I see the doc for a detailed explanation of the treatment and any Q&A. Then I sign the consent form, which I call the "death warrant." Pretty much every consent form ends with something like "up to and including death." It's good to read it because it may bring up a few more questions and the doc is right there to answer them. 

From there I head downstairs for the set up session, which includes a special type of CT scan designed to accurately locate the target. This will be the fourth time I've been through this and as I recall it's simple for me and non-invasive. Data gleaned from the scan is compatible with the planning software used by the doc, the physicists, and others. It's one big integrated system. I'm pretty sure the admin who handles scheduling is already working on treatment dates. I told her I wanted to start ASAP and prefer mid-morning. The actual treatment is five sessions with a day between sessions and the weekend off, so the whole thing is complete in less than two weeks. 

That's the nitty gritty, but underlying this is the fuzzy fear and anxiety about the whole damn thing. It's a lot of "what if?" questions. What if the cancer has already spread to other locations? Am I doomed? Can they be treated? What if my PSA continues to rise but the cancer can't be found? Will this treatment last, or will I be in trouble again by Thanksgiving? Does PC prove to be the assassin, emerging from the shady gang of other cancers? Is this going to fucking kill me? I could go on and on. I personally like to break it all down logically. I can do it my head, but making notes or writing about it can solidify things and help prevent backsliding to the fuzzy world. When I'm satisfied I compartmentalize it and just put it in a box. Fear and anxiety dissipate. I can re-visit the box whenever I need to, but it always goes back in the box. And no, I'm not talking about a literal paper box. This is a psychological technique.

Compartmentalization is a good way to maintain your physical and emotional health (which are completely intertwined) and to stay focused on the outcome that you want. I wrote about it in my book. You should take a look at it because it applies to many challenges you face in life.

Decision Made

My decision is to go forward with radiation treatment for the single lymph node that has been definitively invaded by prostate cancer. I'm hoping to get some additional information that will confirm the wisdom of this decision, but I don't want to wait too long and give the PC more time to spread. I contacted my radiation oncologist today using the hospital's internal messaging system. I hope to hear from them soon. Update: Heard from the doc last night. He answered some questions and will begin to setup the treatment.

Unrelated to PC: Today I saw an ophthalmologist who specializes in treating uveal melanoma. It's a rare form of malignant cancer that forms in the back of the eye and can be fatal. Patients who have a BAP1 mutation are especially susceptible to this disease as well as half a dozen other cancers. This single mutation is the reason I've had so many other cancers. I see this doctor annually and I'm happy to report that my eyes are normal. Great news! I'll take any win I can get.