Sunday, December 20, 2009

Working on a slow boil (warning--rant here)

I've written before about the problems I had early on in dealing with Group Health. I had thought that we had worked through those problems and were operating as a unit to overcome the cancer.

Well, the last four days have been an agony of unknowing for me because of the way that the biopsy results were conveyed to me. And it is, in some respects, a continuation of the earlier issues.

The first major problem, to my mind, is how Group Health conveys bad news to the patient. When the initial diagnosis came out, it was the ENT doctor, someone I had seen once, who told me I had cancer. I'm sure that he meant to be comforting, but when he said it was good that I attended church because that would help me get my affairs in order, that without any additional information concerning the cancer or the stage it was at, meant nothing more than I was gonna die, good thing I had someone to clean up the mess. In the more recent situation, the news that the lymph node was cancerous, was given to me over the phone by the nurse navigator, who prefaced her remarks, with, "I'm sure you want to know what the preliminary results are," or words to that effect. Well, yes, if it is good news, tell on. But when it is cancer, stop, think. I'd prefer to have the news directly from the oncologist (I realize no one likes to be the bearer of bad news, but if you choose to be an oncologist, don't you sorta know that you're going to have to deliver bad news?)because he can give me more thorough explanations of diagnosis and treatment, right?

Group Health's second major problem in this regard, is that they seem to have a process of providing this negative information to me in a vacuum. The only information available Thursday was that it was cancer. Period. The immunohisto chemistry report of the lymph node tumor is not available to me until I finally meet with the oncologist this coming Tuesday, fully a week after the biopsy was done. Whether it really takes that long to get all the information back, I don't know. But don't give me half of the answer, particularly when it is bad news, because the uncertainty is crippling.

Which raises the third issue that we seem, once again, to be moving with glacial slowness to address my disease. Do we need a PET scan? Will that require weeks of waiting like the last time? WTF?

And the fourth problem seems to be professional jealousy. I told the nurse navigator during the phone call, as I was trying to keep a grip on myself, that I wanted the lung cancer specialist at Seattle Cancer Care Alliance consulted at this point about diagnosis and treatment. Her response was, "Well he didn't want to do the lymph node biopsy at the time." Hello, neither did my GH oncologist--as I recall he described the small pinprick of light emanating on the PET scan from the left side of my neck, as a 'ditzel,' something to be treated as an outlier. It was only when I noticed the mass on my neck several weeks ago that the biopsy was done AT MY INSTIGATION. This is my life at stake, and I don't want petty professional jealousies to fucking interfere with making the correct decisions on diagnosis and treatment.

The last four days have been exquisitely painful, truly blindly waiting with nothing but dread to keep me company. Tuesday will not be pretty.


Marcia C said...

Regina, I am so very sorry, not only about the biopsy result but also that you have had to go through this bad news vacuum. What can I do to help - a visit with a friendly ear to hear?

Anonymous said...

Moe, we're thinking about you and worrying along with you.
I don't know how some of these guys get to be MD's without a thorough asskicking.

Deborah said...

hang in there, thinking about you lots.

Anonymous said...

Good luck tomorrow, Moe. Fingers crossed. We're all with you.


Amanda said...

I'm sending positive energy for your appointments tomorrow, along with a healthy dose of compationate medical staff.

Louisa E C said...

Regina -

So sorry I did not read this until now. I can't change the biopsy outcome or improve the communication skills of Group Health, but at least I could have responded in hopes of decreasing the extent to which you feel alone.

My supportive thoughts are with you.