Tuesday, May 14, 2019

0.66% and Hopkins

So, you can like your doctor but hate his office staff, right? Because I’m feeling that now.

I called Hopkins on Monday, and it turns out they were still waiting on records. I tattled, and was promised it would be handled. But as of 4pm today, my current records have yet to be found. They do seem to have enough to do something right now. You know why? Because *I* sent them what I had. And then I found out I may have the only copy of my original records. I called up Dr A’s office, who kind of cringed and said they would see if they were in the archives. But I think I have about 95% of them.  I’m debating stopping by their office on the way to work tomorrow and pulling a front desk sit-in. It’s works for hotels who piss me off! But, I don’t want to lose my reputation of being nice...

My case will be presented to the lymphoma doctors tomorrow. And hopefully one will agree to see me. I think I’m fairly interesting, so we shall see. What is interesting is that, because I reread my whole blog, I now “remember” that May 15, 2004 is when I first found the lump just above my collarbone.  And then, 15 years to the day, my relapse case will get presented to a world renown, major research cancer center.

In good news, I found out today that my treatment plan has been approved by my insurance. It’s going to cost me (and them) a lot. One dose is $31,000. My coinsurance is 30%, but I have an out of pocket maximum, which I will hit in one dose. They put in an application for copay relief for me, but I’m not holding my breath. I suspect our household income in too high (DINKs in a NE metro area). So, since our summer trip to Yellowstone was already canceled, I guess I’ll get lifesaving drug instead.

At one point last time, I was keeping track of the costs. I wonder if that spreadsheet still exists? I quit part way through because it became clear I wasn’t going to hit the % required for a tax deduction, so I don’t know how high I got. If I can find it, it’ll be interesting to see the difference. I’m pretty sure the only copy is on a doorstop downstairs.

For the record, it still doesn’t feel real yet. I still can’t believe I’m sitting here. When I was talking with Hopkins today she was asking about records for some recent years. I reminded her that I was followed by oncology until 2014, but the it was “good luck, have a nice life.” Because ITS NOT SUPPOSED TO COME BACK AFTER 15 YEARS. The German Hodgkins Study Group found 45 relapses after 10 years, in almost 7000 patients. I did the math, 0.66% relapsed this late. Yay for outliers! Or something. There is another lottery I would have rather won.


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