Tuesday, June 23, 2009


There is so much I'd like to say about this incredible friend, and perhaps at some point I'll be able to do that. But now I can barely say her name. She can barely say her name. The tumor is growing, spreading rapidly, and the second look at the biopsy results are inconclusive. There seems to be a lack of clarity about what kind of cancer she has. Squamous? Small cell, non small cell? Lung cancer or not lung cancer. It is now pressing on her Superior Vena Cava. It appears to be attached to her Mediastinum.

I know nothing about the Vena Cava, nothing about the Mediastinum, but when we hang up I look them up. Now I know too much. This is not good. A rapidly growing tumor on the Mediastinum pressing on the Superior Vena Cava can't be anything but dire. And it is still a mass low in the Major Bronchi, growing. This cancer, whatever kind it is, is growing rapidly. Today the pulmonary oncologists at Huntsman meet to discuss Z's case. This is to her a farce. Why can't the best and brightest make a diagnosis and tell her her prognosis and treatment options? For some reason this tumor is mysterious. And her frailty is an issue. She has no weight to lose. No spare pounds on her spare frame. She has elegant bones, but can't lose any weight and survive. If you are proud of your slim frame and your vegetarian diet, take this story as a cautionary tale. I now carry my extra forty pounds proudly, knowing that they might give me a fighting chance in a battle with cancer and other horrors.

There was good news a couple of days ago. The PET scan did not pick-up any other cancer sites. We were jubilant. But now this just pisses her off. The ENT Radiologist was sure this cancer in her upper chest was not the primary tumor. Z's brain MRI was clean. So now it is all a mystery, and she has absolutely no faith in any of the doctors with whom she has consulted so far. Even the oncologist in Petaluma. And faith is the operative word. They so far have given her no definitive answers that offer hope without taking her down an invasive, painful, prolonged process of surgery, chemotherapy and radiation. She has seen the patients shuffling in and out of radiation. They are the walking dead. Their skin hangs from their flesh. They are the sexless, neutered near dead. She does not want to be one of them. I understand this. I would chose to forgo treatment too. But I have no children, no grandchildren. I don't have the same incentives to keep living. And I have a genetic predisposition to vascular dementia, the illness that killed my mother. I was the caregiver for my mother. I know how horrible that long march toward a total loss of self while the body chugs along is, since I spent years watching her meanness remain while all other aspects of "personality" dropped away. Savage is that end. The drooling, shitting, pissing, eating goes on as all the rest fades away day by day. So yes, I would chose to go quickly rather than the alternative of a long slow slog toward idiocy. And since I have no dutiful daughter to care for me, change my diapers, feed me like a baby, keep me safe from my own crazy wants...

Today Z's oncologist meets with a group of oncologists to consult with each other on her case. This is a sign to her that they don't know their asses from their hats. And they offer no "alternative modalities." Even the doctor in Petaluma is now on her shit list. No one tells her what she wants to hear. So today after her appointment with Dr Ackerly, she will think it over and then make her own decision. But cost is part of the problem. Let's say the cost is $50,000 and Medicare pays $40,000. That leaves someone with that $10,000 debt. She's eligible for Medicaid. If she decides to go that route they will put a lean on her house to recoup the cost of her care. All of this pisses her off. Her house is the estate she will leave her children. She says it's the most important thing she has. She will not give it to Medicaid. She will chose to die rather than know her kids will lose her house. I'm willing to bet not one of her kids gives a rats ass about her house. But she does. I hear her fear. I understand it. I know I'd feel the same fear even without children. I can do nothing for her now but listen, go where she asks, do what she asks. Her children have legal rights to her help her make decisions. I have only the right of friendship. I have known her longer than her children have, but they don't know me, so my opinion counts for nothing. I understand this too.

She just called me and she has decided on her own that it is a cyst. She is prone to cysts. She will just find a doctor who will confirm her own diagnosis and treat it like a cyst. It needs draining. I ask if she'll go to her appointment today with Dr. Ackerly at Huntsman. She says she might. She feels too weak to go. I say, "Let's call for an ambulance." She says absolutely not. They will take her to the ER and then admit her. She does not want to go to the hospital. They will get their hands on her and she will never go home alive. I know this fear. This fear of losing control over your own life. It has happened to me. I have had a major psychosis. I was kept for weeks locked up and treated with drugs that made me feel lobotomized.

Today I can do nothing but wait for news. I can do nothing more than be her friend, the one she can say anything to. I will no longer argue with her. It is her life. It is her life to live or not and the choice will be hers, and I will hope for the best and wait.