Sunday, October 26, 2014

2014 Update

Dave, gallery-sitting at our new BigCrow Studios Exhibition Space. 

That good feeling we had, leaving Dave's last treatment, in December 2012 - it lasted about a year. Not nearly long enough, nor as long as we had hoped. About one year later, in December 2013, Dave came down with a vicious respiratory infection. And he has not been well since then. In 2014 it's been one thing after another, mostly respiratory infections, including a few trips to the emergency room. May was the worst month, with pneumonia, shaking chills and a temperature of 104.8. (Good thing Ebola wasn't here then.) He still has shortness of breath on exertion, white spots on the back of his throat (continuous, for months) and lymph nodes enlarging to the point that they are once again impinging on his other organs (per CT scan, and symptoms.) 

He missed a lot of work days and eventually had to stop working. These days, it's hard for him to leave the house (and his air purifier) for very long, or walk more than a few blocks. He applied for disability (SSDI) and was turned down. We have an attorney and are appealing.

Meanwhile, we spend a good portion of every week jousting with insurance companies, health care providers, doctors, lawyers and government agencies. Highlights have been: lab companies and doctors' office staff who can't do simple math; the moron at Lab Corps who told me, "Yo!-F-Y-I- your doctor didn't put the right code on that sample," (so what is the right code?) "I don' know - I ain't no medical person." The doctor who told Dave that he couldn't breathe well because he "wasn't fit" and needed to "exercise more"; the three doctors who told Dave that his months-long throat infection was "just a viral infection - it'll be gone soon" and the $50 to $500 copay we have shell out every time we get one of these blithe pronouncements.

And by the way, I hate Blue Shield of California. If you were thinking of signing up with them, think again. They are expensive; impossible to reach when you have any kind of question; vague and opaque about what is covered and how much they are willing to pay, but one thing for sure is they don't want to pay much. I plan to spend the next 2 weeks trying to research a different insurance that will still let us get Dave's treatment at the Bryan Hemming Cancer Care Center (a wonderful place.)

We see his oncologist again in mid-November and hope to get some kind of serious treatment plan at that time.

All that said, we're both grateful he's still here, unlike some of our fellow CLL travelers (on the sidebar.) We opened an exhibition space in the front of our house, to show artwork and photos by us and our friends. Dave doesn't have to leave the house, he can see friends here, and maybe we'll get lucky and make a little money. If you're in the area, check our other website, for open hours and come by and say "hi."

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