When words are badly used

I went to a St. Patrick's day celebration Wednesday at a downtown law firm. I've been invited to this party for almost as many years as the firm has been in existence. I knew the founding partner when he initially set up his first firm back in 1981 and the economy was so hard, he went for 5 months without being able to pay his mortgage. But with time, all of our circumstances have changed. He and the other named partner in the current firm are very successful litigators with a thriving practice, and they share their good fortune and their joy with their colleagues every year.

I wanted to go to the celebration but I dreaded it as well. It is not easy to see folks for the first time since diagnosis and tell them of your status. I went early before the bagpiper showed up, so I could be heard.

As it turned out, when I got there, I first saw another attorney who works in a separate division in my own office, who I also had not seen in quite awhile. We exchanged greetings, and her immediate response to my changed voice was, "Are you dying?" She probably thought I was recovering from a bad cold and being cute, because when I explained that, no, I had lung cancer, she became embarrassed and very effusive in a somewhat uncomfortable way. And I ended up comforting her. Which is exactly how it felt, and what I did when I told Bob several minutes later that I had cancer. It so wore me out emotionally, those two encounters, that I simply had to turn around and leave the celebration. And I'm still trying to sort it out and deal with the unintended, yet difficult emotions that sprang up as a result of those interactions.

I wasn't going to write about this directly because, again, I think that I prefer to put a happy face forward to you, my dear, silent readers. But, that is also taking care of you, not me. I read an article on a NYT blog this am, steered there by a fellow cancer sufferer on www.inspire.com. And I want each and every one of you who read me and are a friend of mine to please read this article. I'd like to post it in its entirety but cannot figure out how to contact the author and obtain permission. So in its place here is the cite:


http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/

Please read it. It deals with how we have, by our timid and shallow use of language and communication, shortchanged all of us as we confront cancer and dying.

Thank you.

Regina

Changing Directions

We met with the oncologist today. I let my daughter take the lead. She is much nicer than I am and she has a firm grasp of what is going on, and she's very very smart. I am truly a fortunate mother.

We started off with the major problems I have had in not feeling supported by him or Group Health. He took responsibility for the problems in a very admirable fashion--I have to say I was not expecting this. What came clear in the discussion was that using a 'nurse navigator' was more of a hindrance to patient/physician communication than it was a help. Because I think he relied on it to take care of communications that I felt were his responsibility.

To begin with, I don't think Group Health has really defined the nurse navigator role well. Is the nurse navigator a patient advocate or an assistant to the doctor? There are conflicts there.


Another problem with having a nurse navigator between me and the doctor was that the communications became a little bit like that old game of Telephone where the message is distorted by the time it gets to the end. This was highlighted when, according to the doctor, the nurse navigator reported back to him, after she called me last Thursday, that I was grieving but it seemed normal, and that I seemed to be working things out ok. He relied on her assessment and also the fact that she reported to him that she told me I should call him if I had any questions--something that I do not recall from our conversation at all.

We told the doctor, that if there was bad news to be relayed, I wanted it to come from him. Even if it was not complete, at least we could speak in hypotheticals and he could answer the questions that the nurse navigator could not. I would be assured that he was being an advocate for me, looking out for my interests. He seemed to think that he should not really contact me until he had all the information. I told him that was not good, the fact of calling me conveyed care and support even without all the answers, and that was the type of reassurance that I needed at that point.

As an attorney, I have seen a number of studies that attribute a large percentage of medical malpractice lawsuits to bad communication between doctor and patient. My experience last week confirms those studies. Bad news is what it is, but the manner in which it is conveyed can make a significant difference in patient comfort level.

So then we got down to brass tacks. It is not good news. The immunohistology report shows that it is lung cancer in the subclavicular lymph node. Surgery is now out as an option. Radiation? Only as a holding measure. What he and the doctor from Seattle Cancer Care recommend at this point (and this was good--he called the doc from SCCA even before he got word from the nurse navigator that I wanted him to) is that I switch chemotherapeutic agents from intravenously administered cisplatin and pemetrexed every three weeks, to Tarceva pills. One a day for the conceivable future.

Tarceva has been shown to work best in nonsmoking Asian females--the success rate is about 40% in that cohort. With the full range of lung cancer patients it drops to about 14%. And it does not cure, it simply keeps things in stasis. So the best outcome from using Tarceva would be that the cancer doesn't spread further. The side effects are lowered blood counts, some affect on the liver, and acne. Lots of acne. Face, shoulders, back. And if I get the acne, that is an indicator that it is working. We're going to try it for two months and do lab work after one month, then a CT scan after two months to see where the cancer is. If that doesn't work, we move on to a third chemotherapy. Another one that begins with "t" because it comes from the Taxol family too, but I forget the name. This is more toxic to the cancer and has a better success rate, about 40%, but its significant side effect is arthritis. A Hobson's choice.

Prognosis? He wouldn't give me one right now. He said ask me in two months. If it does progress the symptoms will include increasing shortness of breath, and pain. Pain in bones. So let's hope that this Tarceva does the work. At least I meet two of the three criteria for the group it has worked best in.

Here is an example of the type of odds I am up against.