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Today is Friday, March 7th, 2014. We were married 986 days ago, on June 25th, 2011.

Tuesday, December 13, 2011

Good news and bad news from the Twilight Zone

Cancer care is another planet. No news there. We have been wandering without a guidebook - neither Fodor's nor the Lonely Planet. And we have been stuck in a bad hotel in a decent neighborhood with Anthony Perkins for a hotellier (click on the link!) - OK so I exaggerate a bit. A bit.

Mom was diagnosed with non-small-cell carcinoma sometime in early August. She found her oncologist through a beloved primary care physician who recommended someone on his hospital's staff. We made an appointment and went through the testing associated with pinning down the what's and where's. That included X-rays, blood work and PET and CT scans in a lead-lined room below the street, with the sounds of banging from the other rooms. Creepy. A little like listening to the torture of other prisoners, though I liked our "jailers".

Then began the readings of the readings of the tests. I began to understand slowly, that cancer is not linear. We heard that she had stage 4 cancer from her primary care doc. Not good news. But that it was confined to the lung and the pleural cavity. Good news that it wasn't in other places like the kidneys or liver or brain. We heard that lung cancer likes bone. It wasn't in the bone. Cause for near celebration.

She began to have difficulty breathing. She met a pulmonologist who we liked. A lot. He stuck some kind of drain in her side to withdraw the fluid in the space between the lung and the chest wall, so the lung could fully expand. I guess that is what qualifies as bad news and good news. Three times. A liter and a half of fluid each time. Over the course of less than three weeks.  Bad news. She had a "pleurodesis" in which they spray some kind of talc in the cavity and the body is so annoyed that it forms a scar which closes the cavity so the fluid can't accumulate. I never quite got it straight where the fluid goes. Her beloved doc said something like "if you remove the tear ducts, you won't cry even though there is something still stuck in your eye." Good news. Really! Well, sort of. The oncologist was supposed to release her with medication in hand. He never showed up despite calls from the hospital staff, a friend-doctor employed at the same hospital, the residents, the social worker, and yes, her pulmonologist. The oncologist never showed up. Hours after we were supposed to be able to leave. Later he said he had come in 15 minutes after we gave up and went home.

So you may have noticed that there isn't much in this account about the oncologist. Yup. Mom met with him alright. With my brother. With friends in tow. He prescribed a new age cancer drug that costs something on the order of $3000 plus a month. If you can get it. If you can get insurance coverage. Did you know that the supplies of cancer drugs are in short supply? (you can click on this link as well) They are. Bad news.  He gave her the first month's supply.  Good news. We tried to reach him about the second month's supply and got it with one day's supply left on month 1. Did I say that that required multiple phone calls? It did. Not once did I get through to the secretary when I called, though I did leave messages with the answering service, who left messages  for the secretary...We got the  Fed Exed meds from Florida with rubber gloves to take it with. And with a bill for "only" $2000 which dropped to $240 the next month, when she went on the "catastrophic" level of insurance coverage. Forget about the osteoporosis pill that cost over $100 for one month - that's right, one pill. Ah well, that's not about the cancer, and she got the meds she needed. Let's have a party. And then we tried to reach the oncologist about the prognosis. How many calls? How many emails? He didn't answer any of them, but at the next appointment, he told us "one of my patients has lived for TWO years on this drug and is still alive." Good news. "And probably 100% of men over the age of 80 have prostate cancer. And that's not what kills them." SO since she is 92, and 92 is even older than 80-something, she could well live forever with lung cancer. Goodie. There were phone calls about alternative drugs that had just been approved. Emails about prognosis and test results and appointments and ...yes... fear... and itching.... and diarrhea.... Not one call or email was ever returned. Not one.....

Mom went for a second opinion today. Here's the shameless plug for Memorial Sloan Kettering in New York.  We had to get "20 unstained slides" and "1 diagnostic slide" and a CD of her PET and CT scans. OK, that was a PIA. We essentially had to apply to get into see the doc and we were rejected by one who couldn't see her soon enough. We were accepted by another colleague. Oh Happy Day.

Mom went for a second opinion today. The cabbie actually got out to help her into the cab. What are the odds?

Mom went for a second opinion today. The doc spent close to an hour with us. His staff was clear and respectful. He was clear and respectful. There is good news and bad news. But when I called to say that the pharmacy was saying that they couldn't fill the prescription as written, his staff answered the phone on the second ring, asked what pharmacy we were going to use, and said, "don't worry, we'll take care of it." And they resolved it and called back in 20 minutes.

Anthony Perkins was last seen in the rear view mirror.


  1. i would like to send this to onc. #1. but even reading through your excellent retelling of what's up he probably would not recognize himself.

  2. I find it remarkable that onc. #1's behavior does not constitute malpractice. Can we really call that acceptable medical practice? Luckily, you, H and your mother are smart, assertive people who can stand up to the medical system. But why should this be such a struggle? And why has onc. #1 been allowed to get away with giving his patients this level of "care"? I'm so happy to read you've been able to get Mom into S-K. Keep us posted...

  3. Thanks scd and Kenosha...
    I / We appreciate your rooting us on. I suppose the lesson I have learned is that when one is whipsawed back and forth by the news from day to day, one begins to give up control to the medical community and the disease. It takes friends "on the outside" to see it for what it is... and we are grateful for both of you in helping us do that. Why such a struggle indeed....