struggle, spirituality, absurdity

Tag: cancer

Fighting the Insurance Company

Twice this year I have had to fight my insurance company for medication. I’ll spare you the minute details, because that would be a long, complicated explanation of coverage, plan info, benefits, deductibles, out of pocket maximums, and me wanting to hit my insurance company with a shovel.

The first “oopsie” occurred when I called in to have my oral chemo filled. My and their understanding of my plan benefits were vastly different. True, the meds are about $11,000 per month, but that really shouldn’t matter. They essentially informed me that I would owe, over the course of the year, $35,000 in co-pays for that particular prescription. I¬†wanted to tell them that I would be happy to write a check and that they could deposit it in a very “unambiguous” place, but I kept my cool.

We argued for about 2 weeks, which was how long I was off this life-saving medication, and I had to get my church’s insurance broker involved. When we teemed up, we finally convinced the insurance company that I did not, in fact, have to pay a teacher’s annual salary (in Houston, at least) worth of co-pays in order to live. It took a bit of work, but I am thankfully trained in the fine art of reading, analyzing, and understanding complicated¬†documents – thank-you exegetical course work.

To the surprise of no one, the mutation that causes my particular flavor of leukemia reappeared due to not having access to the medication. But I tend to take things in stride, so I figured that I would bounce back after getting back on the pill.

Things were fine until we were notified that my insurance plan was changing its prescription coverage. “Everything would be the same, if not better!” they assured us in their brightly colored pamphlet. I called it the instant I found out: they were going to make the same mistake they did last time. And I was right.

So I rallied the troops, and drafted a few more into my little army: lawyers. Yes, those lawyers were family members, but it still counts. The insurance company still quoted me ridiculous co-pays while I reminded them that that was not how my plan worked: back and forth like a old married couple. After another two weeks, they finally traced the problem to a “computer glitch” that gave them the wrong information. I’m sure the strongly worded letter claiming negligence had nothing to do with it.

I learned a few things that I thought important enough to break my 6-month streak of not writing. The first is that when you tell insurance customer service reps that they are effectively blocking (via negligence) you from getting a life-saving medication, and that you will eventually die without it, that conversation gets very uncomfortable very quickly.

The second thing I learned has shaken me to the core. Consider my scenario: (1) I am well educated – good schools, with a master’s degree. (2) I am decently literate and am able to read and understand complicated documents reasonably well. (3) I have a ton of connections and a huge community of support: multiple, talented lawyers in the family, access to viciously persistent insurance brokers (I love them), people I can talk to in the business world who have fantastic advice, etc. The list goes on. (4) I have a job that offers a lot of flexibility, so that if I need to spend 3 hours on the phone and explain my prescription benefits to 3 different people (all of whom should know it better than me), that’s not a problem. At all.

Now take those 4 points and change them. What if I were a single mother working two jobs to make ends meet who has Chronic Myelogenous Leukemia, who, though fortunate enough to actually have health insurance, is “blessed” with my same plan/company? (1) Little or no education. (2) High-School (or less) reading level. (3) Is very much alone and isolated, considering the toll that surviving takes on her and her family, without much support/family/anything to help her when she needs it. And (4) is easily replaced (jobs are in high demand, workers are expendable) if she needs to take a few hours to attempt sorting the issue out.

That’s a very bleak and vulnerable person. When I listen to political discourse regarding healthcare and other social issues, I can’t help but think about the people that are constantly slipping through the cracks in spite of their giving every ounce of effort they have. It changed the way I think. This isn’t about Republican or Democrat, Obamacare or Romneycare, or any other polarizing dichotomy. This is about real people who are sick and lack the resources to get help. I realize that this instantly gets complicated, but having needed help and receiving it, my mind immediately goes to those that need help but can’t find it.

Thoughts on Remission

I have no idea where I am going with this but feel compelled to write. So bear with me. Or don’t, it’s your choice. That’s the danger (from my perspective) of blogging.

So I got the news that I have achieved a 3-log reduction in the presence of the Leukemia mutation. Or something like that, but I was never great with Biology. Suffice it to say, this is the goal for treating my kind of Leukemia (CML), and within this threshold the disease is considered well under control. My next step is for the mutation (actually it’s the presence of a protein, or something like that) to be undetectable by the machines that do the detecting. That won’t necessarily mean the mutation is gone, but rather that it is so low that the machine can’t find it (we are on the molecular level at this point).

It’s strange, though, because I still sense that I have a ways to go in terms of dealing with the emotional side of having leukemia. For those of you that know me well, this summer has sucked horribly. I’ve been sick and injured for most of the season, and then I was forced to try a different leukemia drug because the original one was no longer effective. Not to mention that I struggled with the side effects of that original drug.

Now I feel better than ever, and I actually have more energy now than I know what to do with. But this morning, a friend of mine mentioned in passing that he had had some blood work done and the doctor said he wanted to run another, more specific test. It ended up being nothing (except that my friend needed to lose a little weight), and yet when I heard this story being told, I almost had a small heart attack at the idea of him needing more blood work. I’ve been down that road, and it didn’t go well with me.

It was like a small panic attack induced by PTSD, or something like that. I can be a little dramatic at times.

But it did tell me that I have a ways to go. I still get depressed, and who wouldn’t? After the leukemia, the multiple deaths of loved ones, the car wreck, my cat that died, the million kidney stones, and a few other things, this shouldn’t surprise me.

It all reminds me of how messy life really can be. I get impatient with movies that have nice, black and white, neatly wrapped endings. How is that anywhere near life-like? Real life has real struggles, real joy, and everything in between – and often at the same time.

I am in remission. That’s incredibly good news, but it isn’t the end of the story, nor is it the beginning of another. My good news simply is. I will carry this damned mutation all my life, and my life will likely be long.

Learning to live in that tension takes serious chutzpah. I pray that God grants me some of his…

Ashamed to Talk About Leukemia

Until recently, I used to feel a bit ashamed to talk about the fact that I have leukemia when I met someone new (or even in normal conversation). This puzzled me. It’s an intense thing to find out about someone, to be sure, but why should I be afraid to bring it up? I’m the guy with cancer, after all.

After thinking about it for a while, I typically hesitated because I did not want to be that type that always seems to have something to complain about. It’s so hard to actually get to know someone like that, and I can imagine the reverse is true, as well.

You know the type. Drama, drama, drama.

This, of course, makes it all the more confusing when someone asks me how I am. “Well, I puked my guts out last night,” can come across as aggressive, at least in its openness and honesty. But then again, is that my problem? They’re the ones that asked…

I have leukemia. It sucks some times, though occasionally I don’t even think about it. But I don’t see the point in not bringing it up when it is on my mind, especially if I think I am trying to protect someone’s feelings or am afraid of their reaction.

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