Thursday, November 10, 2016

Personal Consequences

They say that elections have consequences. That's especially true of this one for me personally. I've tried hard to leave politics out of this blog. For one thing, I don't want to lose half of my readers over a political statement. And that's not what this blog is for anyway. So I'll refrain from sharing my views on this election, except in respect to how it could very well affect me and my cancer treatment. I hope not, but if those in leadership starting in January keep their promises, I could be in some serious trouble.

But before I get into that, I should tell you that my cold is getting better. It's settled into a phlegmy cough that's mainly bad at night. My voice isn't back yet, but I expect to be back to full strength, or close to it, by next week. I had an IV treatment of Vitamin C and Zinc on Tuesday, and expected to feel much better yesterday, but I don't think it made any difference. I laid awake coughing for half the night on Tuesday, so yesterday was rough. But I slept much better last night, and feel like I'm on the mend today. My big performance a week from Sunday is still on. Holy smokes, it's a week from Sunday!

I always avoid talking about politics online. I especially hate political posts on Facebook. Followed closely by games and pictures of food! I've always been very interested in politics, but this election has cured me of that. When my wife was looking forward to her retirement, she expressed concern that I'd be watching political coverage all the time while she was at home. She doesn't like the amount of time I've spent on it. I had three daily political talk shows I recorded and watched every day. There was another weekly one I watched almost every week. So I made her a promise. I told her that, after this election, I'd give up politics for good. And I have.

I stopped recording all of those shows, and I relied upon local news Wednesday morning to tell me the outcome. I couldn't even stay up to see the final call. Another thing cancer has taken from me. I've avoided political news since the election, and I have to say, it feels pretty good. I don't miss it.

But the results of this election will have a profound, concrete effect on me and all of my loved ones. I don't mean to be melodramatic when I say what I'm about to say. I'm just stating the facts as I know them, and taking the candidates and elected officials at their word about what they will do. Not for the first or last time, I feel the need to say to my international readers (and how thankful I am that you are here!) that the concept of having to buy insurance coverage for health care will be a foreign concept for you. Literally! But that's the way it is here in the United States for many, if not most of us.

In my last post, I mentioned the fact that, for most of my adult life, as a self-employed musician, I've had no health insurance. That was also true before I became self-employed, because I worked for companies that were too small to provide it. It wasn't until the Affordable Care Act - otherwise known as Obamacare - was implemented in 2014, that I was able to get coverage that we could afford. The next year, I was diagnosed with aggressive, inoperable prostate cancer. But because of the new law, I could not be dropped because of my illness.

Under the ACA, preventative care is free, including yearly checkups. That's how I found out I have cancer, in a regular checkup with blood work, which cost me nothing. That's when they discovered that 15.8 PSA number.

My coverage has changed three times in the last three years, and it's been a bit of a roller coaster - well documented in this blog - but I've had coverage. Under the old system, I would have discovered my high PSA at a local health fair. After paying out of pocket for a biopsy, an MRI and a bone scan, I would have been diagnosed. But I would not have been able to get insurance after being diagnosed with a serious pre-existing condition. A terminal illness.

You all know where I'm going with this. This congress has tried more than 50 times to repeal Obamacare. This coming January, they will have a President who will sign a repeal. They say they will do it within the first 100 days. At that point, I expect to lose the coverage I have.

I know they say there will be a replacement for it, but I doubt that whatever replacement there is will be ready in the first 100 days, or that it will cover people like me the way Obamacare has. It will be a more "free market" approach, which will mean I'll be thrown back onto the individual market. Will there be protections for people with pre-existing conditions? I don't see how that works unless they mandate that everyone buys insurance, the way Obamacare does. You can't force insurance companies to cover sick people unless you give them a lot more new customers at the same time. That was the deal that Obamacare made with the insurance carriers; You have to insure everybody, but all the healthy people will have to buy insurance too.

My treatment costs are high, though not as high as many. My four-month Lupron shot, which is due again in January, costs $1,900. But as you know if you've been reading this blog, Lupron has stopped controlling my cancer. So we needed an add-on to it; Xtandi, which costs $9,000 per month. If I lose coverage early next year, and have to wait for the government to come up with some replacement, nobody is going to pick up that tab in the meantime. We have friends with means who are helping us a lot, but I think that's beyond their reach.

I have many other concerns about the outcome of this election, as many do. But this one is in sharp focus. It's deeply personal, and it's literally a matter of life and death. The alarming rate at which my cancer was advancing has been, for the moment, arrested by Xtandi. If I have to go off of it for even a few months because the cost is too high, all those gains will be lost in a hurry. If I lose coverage permanently, well, you do the math.

I know Obamacare has its problems. I know it's been a hardship for some. I know people that it's been a hardship for. And I really don't want the comments on this post to be a debate on the merits and drawbacks of the ACA. I'm just telling you my story. Once I had no insurance, now I have it. And I'm afraid that I'll lose it soon, and that my life span will be severely shortened because of it, because no company will cover me with aggressive Stage 4 cancer. That's all.

That's as close to a political statement as you'll ever see from me. I'd like to end this post on a more positive note. Earlier, I talked about how I dislike politics on Facebook. A couple of weeks ago, I composed a post that I intended to put on my Facebook timeline, but never did. I think the sentiment of that post would make a good conclusion to this one. Here's part of what I wrote, but never posted:

I never react to or comment on a political post on Facebook, whether I agree or disagree. I'm as political as anyone. Probably more than most. But friendships are ending over this election. I refuse to let that happen. I don't want to lose anyone I love to this crap show. It comes down to this: I love my friends more than I love my belief systems. If we could all get to that point, this world would be a much better place, I think.

Let's love each other more than we love our belief systems, whether they be political, religious, or any other construct. Elections come and go, but people are forever. As Forrest Gump would say, that's all I have to say about that.

Now that I'm done with politics, these words ring true to me all the more. Let's love each other more than we love our belief systems. I am at peace about my mortality. It's up to God to decide if I get more time or less. Who knows, maybe Xtandi was only gonna work for me for a few more months anyway. But I'd like to keep taking it for as long as it works, not just for as long as I can afford to take it.

However this works out, I hope that, in their rush to dismantle the signature achievement of this President that they despise so much, they remember to protect people like me. #waroncancer


  1. Mark I am praying that for people like you and my Aunt and Uncle who desperately need this health care that coverage will not be lost at all. I am believing they are going to make a way and not just rip it out from under people. That is certainly my prayer.

  2. I don't know whether this would be true, but it is my hope that whatever ACA coverage you select this month would be honored throughout 2017 giving a chance for an affordable replacement to be crafted and implemented. I share your concerns about the need that preexisting conditions must NOT be excluded. Good luck!

  3. Dear Mark.
    I hope this is not the case, and right now, I'm more worried about the toll this stress will take on you.
    I can only speak for me: I cannot possibly cover the cost of insurance for you, but I will do all I can to help you.
    I promise.

    1. That's very sweet, Janice! Thank you. I was pretty morose about this possibility yesterday, but today, I'm at peace. Yesterday, this would have been a much angrier post. But I'm OK today. I know God is still in control.

  4. The Republicans have voted some 50 times to repeal Obamacare!Now the ball is in their court and it better not be just a giveaway to Insurance companies! #IVotedHRC

  5. Mark it affects me too being a diabetic and even high blood pressure if you were not covered by employer no one wanted to insure you,, You were a risk to them... we own our own company,,, lucky Dwight is over 65... My daughter is a navigator for the health planning council and a project manager and has help me lower mine each year... She goes to every meeting there is too help people like us... It won't happen over night I can at least say that,, but I can assure you if one of these others all of a sudden came up with a life affecting illness or injury and lost they job, and health insurance , home, bills come in,, no help,, they;d be angry too... there has got to be affordable health care for us all ,,,,,,,,,