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Twice Bitten By the Same Snake

Baseball games played in August are often referred to as the ‘Dog Days’ of the season. Typically this is a point where a fatigue sets in from having already played so many games, and that fatigue is compounded by the hottest days of the summer. I’m not sure how dogs got the blame for this. Maybe the outfielders shouldn’t stand out there panting with their tongues out so often. I’m just saying’…

These days could easily be called the ‘Dog Days’ of my wife’s recovery. Yes, the trend is still positive but her day to day life is anything but predictable. One day she feels great and has lots of energy. The next day she is burdened with pain, fatigue, and nausea.

We have put substantial thought into the hows and whys of this and so far have come up with no answers. Doctors tell us that recovery from such massive surgery is seldom linear, and that this condition is typical. Thank you Doctor for informing us that it’s typical that we will not have ‘typical’ days, days that look much like the day before, for a very long time.

And these ‘Dog Days’ also have a tyranny of their own for me.

I work forty hours a week, in addition I have a part time job, do the food shopping, run errands, do what needs to be done around the house, manage my newly discovered diabetes (which is much harder than it sounds), try to find time to write, time to take pictures, time to make music, and on rare occasions get eight hours of sleep. Oh, and I am the primary care giver and sole medical advocate for my wife which in itself is almost a full time job.

I’m not complaining mind you. I gladly do all this because I love Carole from the top of my bald head to the bottom of my sore feet, but in doing all this I am reminded of just how precarious our situation remains.

For Carole to get through her day she requires a small warehouse of medications, not the least of which is a morphine level pain med called fentanyl. The stuff is not bullet proof, she still has pain but this drug tamps it down to a manageable level so Carole can recover.

This is not inexpensive stuff. On one occasion when our previous insurance company had not yet approved the prescription, I had to pay for it myself so I have felt the pain of purchasing her pain relief. Since then, Carole’s dosage has quadrupled. Health insurance, to put it bluntly, is Carole’s lifeline and what keeps us from financially crossing over the line into bankruptcy.

And that brings me to COBRA.

We are paying COBRA so my wife can continue to have health insurance. As decisions go, this is not much of one. We have to do this, it’s not optional. I am currently working for an agency that places people in high tech jobs ( think of it as ‘Geeks R Us’). They pay me an hourly wage but no benefits. The truth of the matter is that I have to get hired by the nice people I am temped out to, or find a job somewhere else that has benefits. COBRA is not indefinite. Health insurance is not optional.

Since being let go by my former employer last August (another ‘Dog Day’ in our lives) I have written very little about what happened and why I was let go. To this day I still have not been given a reason beside ‘your department is going in a different direction’. That’s very informative, thanks. Obviously that direction was right where I was standing because you drove the bus over me. It was a humiliating experience and compounded Carole’s recovery by a factor of one thousand, especially emotionally.

Why do I bring up the dream-turned-nightmare of my former employer? Because currently our COBRA is managed through them and not once, but twice, I have enjoyed that special moment when the pharmacy told me that our insurance had been cancelled, and asked if I’ll be paying for these meds by ATM or credit card.

The reason the first time was that the company just changed health insurance carriers and my application was overlooked. I’m still not sure what the second reason is, but it still stinks. I am about to get in the car and make the trip to the pharmacy and find out if everyone got the forms they required, filled out correctly, with signatures in all the right places, with the requested number of copies, filed in the correct folder in the proper filing cabinet. Of course, if our check had been one day late we could have been dropped. Yes, we’re paying for this. Amazing, isn’t it?

If anyone has ever wondered why our book is called ‘You Mean, Besides the Cancer?’, this article should shed some light on that. The disease has been completely removed from my wife. The incompetence has not been completely removed from some of the people we have been forced to deal with over the last eighteen months.

God bless them each and every one, but it puzzles me how these people cannot see that their actions (or lack thereof) cause pain, whether they work in administration, ‘skilled nursing’, home health care, or answer the phone in a doctor’s office.

Any cancer survivor or care giver will tell you that more energy goes into the daily ‘insignificant’ battles than into fighting the actual disease. I am old enough to realize that any organization filled with human beings is inherently flawed because all human beings are, but kids, can’t we try a little harder?

It’s difficult for me to describe our book to people that ask about it just for this reason. Did we fight cancer? Yes, but the real hand to hand combat was done just trying to get the care we needed, when we needed it, and sadly it continues to be that way.

That’s also why I commonly refer to Carole’s cure as the ‘Stanford Miracle’. From my perspective in the care giver foxhole, the people at Stanford cared. They’re not all MENSA candidates either, they just made a commitment every day they woke up to care about what they did, and not cause any more pain or anxiety for their patients, and I saw this from the most talented doctors down to security guards in the parking lots.

But Stanford is only one place on earth. There are too many cancer patients and care givers dealing with the frustrations of a flawed medical system and the people who fill them.

It might sound like a dull read to some, but ‘You Mean, Besides the Cancer?’ was anything but dull to live through, especially when the one I loved (and still do) was the one in pain, the one in the waiting room, the next in line, or whose insurance was just terminated…

AGAIN.

 

 

 

 

 

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