I have written on this blog about my best friend's dad, Jim. He was diagnosed with mesothelioma just a couple of weeks ago, an untreatable and incurable cancer. Well the diagnosis, as it turns out, is not that "simple." And because he's a Kaiser Permanente patient, it just reminds me how much I detest and loathe managed care. Having had Kaiser medical insurance for a few years, I have to say they are great if you have, say, a cold or ear infection. But when it comes to the big important stuff? Let's just put it this way: I'm so happy that I had options when I was diagnosed with Multiple Myeloma because I do not trust them with my life. Not one tiny bit. Yuck. Their hospitals and medical offices are depressing, dark, old and dingy. The ER wait times are insane and unacceptable. And trying to find a parking spot is a nightmare. I digress. Back to my story...
For well over a year, Jim has been struggling with his health. Namely, breathing has become increasingly difficult and getting worse. This has gotten to the point where even getting out of his chair to go to the bathroom leaves him winded. He rarely goes anywhere outside his home and even having conversations is something he avoids. When we were there just last month, I did have a chance to talk to Jim at length but he struggled and gasped for air throughout. We talked a lot about how I was diagnosed, my symptoms, side effects, and how potentially, he had something like I have. He was getting ready for a bone marrow biopsy (ouch!), but they had ruled out lung cancer.
Then Julie called to tell me that they had finally gotten him in to see their top pulmonologist in LA. At that appointment, Jim was told he has mesothelioma and his time was limited and there was nothing he could do. We all cried, I know Julie and her family cry all the time, Jake (Julie's thirteen year old son) doesn't want to leave his side, and it's awful. They did a biopsy but that was just for formality's sake-- the doctor said that he was positive that it was mesothelioma but the biopsy results would enable him to see an oncologist for whatever care options were available to make him comfortable. That was last Friday.
I talked to Julie on Tuesday. She had still not heard back from Kaiser on results. I thought that was very odd-- if someone has late stage cancer, usually they read that report immediately and you're in an oncologist's office like yesterday already. I said, "Julie, what if he doesn't have mesothelioma or cancer at all?"
So Wednesday evening I got a call from Julie. I was with William and I think he must have heard my happy dance all the way downstairs. Turns out, Jim doesn't have any cancer anywhere and so now what? (Don't even get me started about how angry I was that the doctor gave Jim a diagnosis like that without knowing for sure. Asshole. In fact, for the rest of this posting, let's just call that doctor Dr. Asshole just because I feel like it.)
The next day, I talked to Julie. She had spoken with Dr. Asshole. He said that even though the biopsy and scans and blood work and everything else showed no cancer whatsoever, he was sure it was cancer anyway so he's going to stick with that diagnosis, there was nothing more he could do, call hospice to make him comfortable. Oh, and because there's no cancer in Jim that anyone can find, he can't see an oncologist because Kaiser requires that you have cancer in order to get that appointment. What the hell, Kaiser- you suck. Of course, that should come as no surprise considering Kaiser Permanente gets sued all the time.
Simply picking up the phone and finding different specialists to see Jim isn't an option because... he's a Kaiser patient and if you have Kaiser, you don't get to go out of network unless you're in a remote location and you're in the midst of an emergency, like cardiac arrest. And even then, you get to fight with Kaiser for months getting them to pay for even that.
Did I write already that I hate managed care? I hate cancer, I hate Kaiser, I hate managed care (in case you forgot how I feel), I hate that Jim is sick. I am angry right now. Ok, I'm taking deep yoga breaths. Calm. Peace.
And so the sage continues.