Tuesday, June 23, 2009

Z

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.

15 comments:

Cat said...

I cannot fathom - do not even want to know what you are going through it sounds so terribly painful and almost torturous the wait on the final diagnosis and treatment options...

Sending good thoughts your way.

Ghost Dansing said...

me too.... just like Cat

anita said...

"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."

That statement is SO VERY untrue. Radiation does absolutely none of those things. Radiation is a treatment focused on one specific location of the body (the tumor), and at its very worse causes exhaustion dehydration (therefore people undergoing radiation tend to sleep a lot and drink a lot of water), and some tenderness (almost like sunburn) to the skin, in a localized way only. If one is having radiation to the head or possibly neck, it will cause hair loss.

If radiation is being used as a last-ditch effort to give someone a little more time here on this earth, then it is more likely that those aspects you describe above have been caused by the progression of the cancer, not the radiation.

No offense Utah, but please do not exaggerate or scare people with such overtly bizarre statements about something you obviously know very little about.

Nan said...

Well, that definitely sucks. Sorry to hear Z's lost confidence in her doctors. We all want certainty, but the good doctors, the honest ones, will never offer it.

And I'll second what Anita said about radiation. I used to volunteer as a driver for people who were going from Blacksburg, VA, up to Roanoke for radiation; I hung out in the waiting room at the clinic while whoever I drove was were being treated, and to me the patients in general didn't look any better or worse than the general population. Tired, yes, because radiation exhausts you (which is why they relied on volunteers to drive them), but zombie-like, no.

Steve said...

Utah
I have found over the last 5 years that the rights of being a friend may not hold up in a court of law they hold up with the most important court.
And that is the person you love.

You know I am always here for you and Z go through this difficult time.

Utah Savage said...

Anita, I'm sorry for the misunderstanding. I am reporting Z's impressions. I have not visited Huntsman as a patient. I have no experience with radiation so I can not counter Z's assertions. And if I contradict or argue with her she gets very angry and tells me not to fight with her. I could speak fairly specifically about the adult psych ward, but not the radiation department at Huntsman or any other medical facility.

susan said...

This was so hard to read, Utah. I feel very bad for your friend and understand how she could be sad, frightened and angry to the point of being irrational in her stories to you. Knowing the worst isn't the worst, it's not knowing at all that can drive someone over the edge. I hope you're looking after yourself.

Fran said...

My Father-in-law was diagnosed with Cancer last year. The diagnosis took what seemed like forever, he went to a lot of specialists & endured a ton of invasive, expensive & painful tests. When one goes to a specialist, you expect to get some answers. He was bounced around like a pinball. At some point, one test involved taking a bone marrow sample from the hip. in his case his bones had "shark bite" chunks of bone mass that had been eaten away- so they told him taking the hip bone marrow sample **may** shatter his hip, and he would not heal since his bones were so badly deteriorated.

I swear, I think I would have stopped right there, if it were me.
But he forged ahead. Many of these tests involved sending samples to a one-of-a-kind distant lab & the results did not come back for weeks.

Finally! They had a diagnosis.
They did Chemo & radiation. He is 82 & now in remission. But at some point the chemo wiped out his immune system so badly, it almost killed him.

I really respect peoples choice to not endure treatment, if they so choose.

It may be chemo that has people feeling more ragged. It can do a serious number on your intestines, hair loss, all kinds of strange side effects. Many people have reported feeling like hell during chemo treatments.

Anyway, I am sorry they do not have answers right away.
It is difficult and frustrating & sad all at once.

anita said...

no problem utah. i just wanted to clarify things a little.

and yes, cancer is one bloody motherfucker of a disease. and despite all the "strides" the experts say they are making (i'm thinking in part of that awful corporate-sponsored 'pink ribbon' farce), the bottom line is that the only true "cure" (if you can call it that) for cancer is early detection. plain and simple.

and i think we do have to respect the wishes of those who have been diagnosed with late stage cancer and allow them their process of working through their treatments. what they are willing to put themselves through and what they just want to leave alone so they can have some modicum of dignity in their final days.

and as someone above just said, we all want certainty, but a doctor worth his or her salt will acknowledge to the patient that there is typically no certainty at all when it comes to cancer diagnosis, treatment or prognosis. all they really can do is tell you about the results of the clinical trials that have been conducted that form a basis for their treatment plans and recommendations. bottom line, they are almost as unsure of things as the patient is.

Spadoman said...

Stopped by to tell you I'm home from a long journey. Wish the post was more upbeat, but that's life. The reality of it. Sometimes there is just nothing to do but be a friend. How could you be expected to have answers for these things? If they were happening to you, you might feel you know what you would do, but then again, how do you know? I wouldn't. Most people couldn't guess how to handle this kind of trauma.
As I sit here, I want to send good positive vibes out your way. For you, for Z. Then out to all who suffer and their family and friends who care and suffer with them. It's all I seem to be able to do. That, and be a friend to those that need one, like you do.

Peace.

La Belette Rouge said...

I hate it when I feel so much but the words are just inadequate. I am so sorry is all that comes to mind, that and the impulse to hug you. Take good care of your sweet self. Loving your friend is all you can do and that is no small gift.xo

Utah Savage said...

Anit, I'm so glad you came back so I could explain that. It is bad writing that left that reaction to the radiation department in my mind and not in Z's. I have two friends who work at Huntsman Cancer Institute and they have nothing but good things to say about it.

It is Z's view of herself that she's projecting onto other women with cancer getting radiation treatments. It isn't reality, it's fear.

I'm sorry to put you all through this post. It is the only way I have of releasing pain and frustration and fear. So I unload it on you. You are all so kind to travel this difficult journey with me. Thank you.

Fran said...

Hey now! Don't be apologizing. We choose to come visit - we want to support you , supporting Z. Consider us cheap therapy!

The Crow said...

This is one of those situations where all the words in the world cannot help much, so I will say what I feel for both of you: I am so very sorry for your pains.

Martha

kathleenmaher said...

Such terrible pain! It looms so close: if only we could share each other's pain--share it so that as you hurt for your friend and I hurt for you--and her--she might hurt that much less.