12-31-2005

There are a few things I want to remember. Not all of them good.
I have been deeply hurt by the selfishness and coldness of people I like. People I never thought would be so incapable of giving. I will forgive them in time because I know they simply cannot relate. It is an un-reality to them. One day, it will not be. I will hurt for them then, because I will understand.

I am afraid of what I will walk into when I return to work. That sick corporate entity has actually discussed cutting my pay. Could anything be more wrong than that?

I guess time off is just time off, no matter the circumstances. (I'm salaried you morons!)

On a better note:
I have been deeply moved by the kindness of strangers. Some who do not know what I am feeling still came through with the nicest of thoughts.
Steve, our new CFO, took a moment just to stand next to me and to say "I want you to know how grateful we are to you for being at work this week. I know it must be very hard for you to be here. I know your boss is grateful too."
I needed desperately to hear those words and they mean a lot to me still. That office was seeming very cruel and uncaring until then.

To Carolyn and Aaron and Diane, who took a moment to talk with me, give me a hug and ask if all was well - Thank you for that.

A billion hugs and thanks to my best friend Dino - who came through for me completely. She is a blessing. I love her dearly and pray for her health too.

And my dear husband...I have never loved you more than now. You have been so kind and so giving. You brought me lunch on your day off and you've held me close when I needed it.
I wish you could come with me to Houston but I know that's not possible. Heaven knows I don't want to lose another life and that is what would happen if you left Pooh alone. Stay and keep him safe for me.

Finally - and not at all least - all of these incredible and amazing internet friends. I have no words to express such deep gratitude for perspectives, hugs, caring, kindness and hope.
I will remember always the soft place you kept for me to land.

***
No one knew in October that a man had only three months to live. To me, that is amazing and astounding and absurd.
I will miss, already miss, so very much sharing.

12-29-05

Dr. Katherine M. Pisters, M.D.
Professor, Thoracic/Head & Neck Med Onc
713/792-6363

I would like to know her batting average.
She was the "team-lead" in our little Shakesperean Comedy of Errors.
HE was her responsibility.
I would like to know just what day she wrote my father off as unsalvageable.

Our "family meeting" was lead by Dr.s Suresh K. Reddy (Associate Professor, Palliative Care&Rehab Med) and someone named "Yano" who doesn't appear in the directory. Maybe I have his name wrong. He was VERY middle-eastern.

These two are part of the Palliative Care group (a sort of nursing-home facility). They spent the better part of two hours telling us that the cancer had advanced two to three weeks ago, is outside the lung, is into a bone and is "agressive". All of which was news to us. (and by US I mean my mother)
We asked why they are letting my father starve and they said something like "the cancer uses all the nurishment he takes in so feeding him would only feed the cancer". They told us an NG Tube or a TPN intraveneous drip would "not extend his life".
They told us there is no hope at all.

There is a voice inside my head that asks: Who made the decision to send my father to palliative care? Why did they make that decision? Why now and not three weeks ago?
Here's the big questions: What if he was sent there by mistake (it would not be the first)? What if these doctors ONLY deal with those where there is no hope and because someone (we do not know who) sent him to palliative care, these doctors assume he is past salvation?
What if they are wrong?
What if they read his charts and images differently than previous doctors simply because they are in the palliative care field?
What if it's "all news to us" because it isn't even correct but an assumption?

We've only ever been told that the cancer is contained. Stage III at most. Non-small-cell - which shouldn't travel and isn't agressive.
Radiation didn't even start until 12-16.
Never have they attempted to FEED my father. Never did they try to NOURISH him.
And I asked "HAVE YOU TRIED FEEDING HIM? WE HAVEN'T TRIED SO HOW DO WE KNOW IT WON'T HELP!"
And I was told "We've done studies that show....."
And my mother didn't want to argue so she just said "It's not about the nourishment."

What if they're wrong?
We'll never know that.
I realize I'm holding on to some kind of hope or some kind of denial but they've made so many mistakes so far....why couldn't this just be another?
One day in ICU he was made to sit in a chair, move around and encouraged to eat. The next morning a nurse came in and my mother said "aren't you going to try to get him to sit up?" and she said "His chart says he's bedridden."
My mother said "NO HE'S NOT!"
See? Every shift change we had a different opinion. WHY??

In the end, it doesn't matter anymore. They will do nothing but make him comfortable and wait for him to die.

A friend, who has two children that were born with lukemia (and are now almost teenagers) said "This is a high-stakes crapshoot. You try everything."
I can't get them to try anything.

MD Anderson murdered my father. Dr. Pisters led the charge.
When I am sane again, they may very well have to answer to that.

12-22-05

Yesterday was our first good day in a very long time. Sheri Ford, the best "sitter" that ever existed, gave us our first glimpse that there could be a future. She also gave my mother her first peaceful night in 3 months.
Thank you Sheri.

But Sheri is home with her kids today. And she should be. It is ALL about family. I really is.
Unfortunately, no one else has been good for us. Today was a bad day. The roller coaster continues.
Today he was incoherent. He doesn't know why we keep pushing him to do things he doesn't want to do. He is very angry. He doesn't really know who we are either.
Yesterday he did. Today, he didn't.

Since this began, everyone said "Be the squeaky wheel. Be you're own advocate." My poor mother is a)exhausted, b)too tired to fight or even think clearly, c)hurting beyond comprehension, d) too close to the fire to see that it might be overcome.
Today, she gave up.
Tomorrow she may not. We don't know from one minute to the next.

I told her I wanted her to stop taking all the responsibility on herself. Let us do some. We'll come up and feed him. We'll stay in the room while she naps down the hall. We'll keep him safe for her so she can regain strength.
This she completely misconstrued as an attack.
We told her she needed to push the staff to feed him, bathe him, move him. She said the staff "is all so great and they're doing all they can and they have so many other patients to attend to." She also said I'm not in Houston so I don't know all the things she's had to do.

Maybe I'm not but I know for certain that they tell my mother what he can eat and she orders it and she begs him to eat. And he says no until she gives up. And no one is tracking what he's not eating. I read the folder. I READ it.
They allude to him having no appetite but they don't say, "He had less than 5 bites of food in this 24hr period."
They notate his albumin and protien levels.
Then the shift changes. Nothing else changes.

The shift that came in this morning wholly believed my father, who was out of bed yesterday and doing quite a bit better, was to be entirely bedridden now.

Anyway, I squeaked to the staff. I told them they cannot expect my mother to feed him or bathe him or move him or verify that my father is doing his hourly lung exercies. The staff would have to take those responsibilities in house!!
I told my mother to ask for help and to tell them what I did......but....that made me the enemy somehow.
Now I'm the bad-guy.
I don't want to be the bad-guy. I want us to be a team.
She has us blocked out though. She won't let us sit with him. She has decided that he is HER charge and we cannot possibly make good decisions for his care.

He is hers. His life is hers.
Oh dear God, she will live the rest of her days saying she "should have done..."
My heart aches from loss, from sadness, from care.
Mom...you just don't know how sorry I am - for everything you're going through.
I told you I'm sorry and I'm not mad...but you'll never forgive me. I know better.
I just want you to be stronger, healthier, safer and not alone.
Why do you have to do this alone?

It is wrong that I want to flee home, but I do.
I want to lay in my own bed and cry my own tears and not be a burden to anyone in the middle of this....tragedy.
You said to me tonight "You're father is not going to survive this."
A second later you say "when he gets home we can get a physical therapist to pick him up three times a week and take him to therapy"

I don't know what to believe. I hold this tiny little glimmer of hope so deep inside me...but you said it. Maybe to hurt me. Maybe to shock me. Maybe you think I'm in some kind of denial.
I'm not.
I'm in the same pain you are in. You've been married to him 41 years. You've never ever been on your own.
But I've known him all my life. I've never ever known life without him.
He's my father.
He's MY father.

I love you both more than there are words to describe it.
Don't shut me out.

12-19-05

I spoke to Dad on the phone on Sunday. At first he thought I was Mom and said "I'm waiting for you. Where are you? Why aren't you here yet?" So...I had to explain and then I asked where Mom was. He said she'd gone home to do some things (laundry) and he needed her back up there. He was hot. He needed ice. The nurses put a robe on him. He said, "they put this damned robe on me and that's not right."
I told him to push the nurse button and ask for some ice chips. I said "They'll bring it. They can do that. And you need to tell them what you're feeling."
(Why won't they tell the nurses and doctors what their problems are?? Why do they suffer in silence?)
I hung up the phone and called the nurse's station and told them to go take care of my father. They said they were already on the way.
My poor Mom. He's acting like he can do nothing without her. That's just too much pressure.

I spoke to Mom on Saturday. She wouldn't say much at first. Then, suddenly, 10 minutes into the conversation she says "Ok, I can talk now. The nurse finally left."
She then proceeded to tell me every detail of the past few days. None of it good. All of it trying and tiring.
And again I said "You have to tell THEM all of these things. Every detail. It is their burden. They are paid highly to listen, observe and act."
I do not understand my parents.

The latest:
From: Sister
Sent: Monday, December 19, 2005 10:17 AM
To: Me
Subject: Dad update

I just talked to mom shortly, Dad is doing fine with the radiation but they have him on some medicine (not sure for what) that has him slurring his speech and makes him drool. He's very unhappy about that and I really can't say I blame him. He had fever twice lastnight. She didn't say how high but it wasn't a good night. I didn't get to talk to her long but she did say there was a physical therapist in there which is good, he needs some movement. Love you guys!

*****
Why don't the docs check the side effects before handing out the meds? Are they giving him too much? Should they stop with all the meds?
Questions. Nothing but questions.

12-15-05 Cancer + 4,728

The days are a billion minutes long.

Wednesday 12-14-05 9a.m. e-mail from my sister said Mom took Dad back to the hospital on Tuesday afternoon. He was too weak again. He was delirious and halucinating.
The E.R. kept him all day. Fluids and breathing treatments.
They finally found a room for him at 1a.m.
Mom never sleeps anymore. It's a wonder she's not halucinating.

Dad sleeps. In between rants and insane desires to urinate (every thirty minutes, all day and night). I wonder now if Dad has any idea what is happening to him. Does he have any moments of clarity?

6:30 p.m. Wednesday 12-14-05 My sister called. She said "please call Mom. Aunt Donna called and said Mom's at home and she's just crying uncontrollably and I know Mom won't tell me what's going on." (My sister is the youngest and my parents tend to "protect her".) I assured her that Mom is very likely needing a good hard cry. She's tired and frustrated and I'm not at all surprised.
Of course, I called to check.

I was right. Mom just needed to go off about what is going on. Or not going on, as the case may be.
She told me Dad was seeing famous people in the house. (Lucious someone...used to be a boxer.) She told me things that I will never ever relate to another person out of respect for my father and of my own memories.
I listened and I did my best to console and to tell her she's doing all the right things.

Mom told me that she has finally reached a point where she wants answers and she will not shut up until she gets them.
Good. It's time that happen.

Mom and I both wonder where the hero is. I've heard so many stories of cancer victims telling about "that one nurse or doctor or therapist that motivated them to live and to fight". We've seen none of that. No one has even said "let's talk about this. Let me help you shoulder the burden. Let me reassure you." No heroes.
One of the "nurse practitioners" DID take the time to research the medicine that they had my father on (to regulate his heart so he could have surgery). Turns out there's a very remote possibility that it could cause: swelling, confusion, halucinations. Imagine that. The doctors SWORE that wasn't what was causing the problems.
He's off the meds.

THE NEW PLAN: is to start radiation to shrink the tumor. He wouldn't survive surgery. (He would have 3 months ago - but not anymore.)
It is presumed that the tumor is blocking his airway enough to cause this insane inability to breathe. Shortness of breath and all.

My mother told them that they HAVE TO TELL HER WHAT TO EXPECT! She said "When will we know if it's working? One treatment?"
They said "It will take about 5 months to shrink the tumor."
My mother screamed "THAT'S NOT GOOD ENOUGH. WE DON'T HAVE FIVE MONTHS LIKE THIS!"

Cancergiggles commented that cancer "is not about you. It is about all the people who care about you and care for you."
I really did think it was about Dad. Now I KNOW it's about all of us.

I'm going to lose my Dad.
No wishes are going to stop that. I'm done wishing.
Mom and I are just resigned to waiting, watching, and hoping he will have a few moments of mental clarity to realize we are here and that we love him.

I should be there. But I don't know how.

I lost my mind this morning.
I was listening to the radio loud in the truck on the way to work.
Too loud. Hurt my ears and block out my thoughts loud....and I screamed "I never meant to FADE AWAY." and then I screamed again. Louder and harder than I have ever screamed in my entire life.
I scared myself. And then I split off. I became two.
I am Agnes' joyful facade.
I am Agnes' screaming madness.

So where were you

When all this I was going through?!

You never took the time to ask me

Just what you could do.

I just needed someone to talk to

You were just too busy with yourself

You were never there for me to

Express how I felt

I just stuffed it down

Now I’m older and I feel like

I could let some of this anger fade

But it seems the surfaceI am scratching

Is the bed that I have made

I never meant to fade away!!

12-12-05 Shattered

You sorry, self-pitying schmuck. You dare tell me "I don't know what you expect me to do." and then pour gasoline on the already charred remains of my soul?
You tell me you feel bad about Mickey too but "what do you want me to do?!"
You have the nerve to go off on me about MONEY!! MONEY!! As if it somehow became MY responsiblity to provide YOU with the lifestyle YOU'RE accustomed to??!!
Pony up! You want to get out of debt, how the hell is it my responsibility to do that for you? Is it your responsiblity to pay the loan I took out for my sister's wedding?? Of course not. I would never ask you to.

You want to know what I expect you to do? I expect you to have some goddamned EMPATHY! Show some FUCKING COMPASSION! Realize that we are supposed to be a team! We are not roommates! This is 12yrs of my life. MY LIFE - not just yours. My father still has cancer. My cat is still dead. I am GRIEVING! I am without hope. I am in so much pain inside that I want to tear my skin from my bones so at least I'll understand why I hurt so much.
Could you look at anyone else but you?? Could you maybe decide that this isn't the time to bitch about your sad situation?

Fine - I will go find another job. I'll give up my short commute and my better days and I will go back to the life that made me miserable. We'll rarely see one another. I'll be on call 24/7. You'll start accusing me of seeing someone else again. But MAYBE I'll make enough to pull us up from the dungeon you believe we're in.
I will resent the hell out of you for it. Every fucking day.
I'll pay off your bills. I'll pay for everything. Our bills. The groceries. Everything. Don't sweat it. I will just let you tilt the responsibilites over to my side again.
As long as there's extra money, you're happy. I get that. And I love you so I want you to be happy.
And in time, I'll learn how not to hate you for it. Maybe.

(Oh, and a footnote; You said you went to North Carolina with only $150.00 and that's why you didn't spend any money. Well isn't that sad? I can't remember the last time I had $150 in the bank at any one time. What would you do if I said "I'm sick of being poor and going into debt YOU need to make more money.")

12-5-05 I don't understand

I saw you three weeks ago Dad. You could walk then. Now you look like a ghost. You're afraid to stand, and can't do that on your own. I don't know what is going on inside you. I don't understand how this one little tumor has taken so much out of you - and keeps taking. I'm afraid you won't last the week.

You held me and said "Whatever happens I want you to know that I love you." And there were a thousand other things in your voice. So much more you wanted to say. But you don't need to Daddy. Because I know already.
I said "I know and I love you too. You keep fighting. I really need you to fight."
You said "I'm trying."

On the phone last night I said "I'll be back for Christmas. Three weeks." And you said "I love you." but that one sounded like you won't be here then. I feel like we've said goodbye.

I will forever be angry at the medical community. They are not doing enough and they are not doing it fast enough. How can you be wasting away like this? How can they not be doing something about it?

And I see my future. I see me where you are. No one will take care of me like she takes care of you. No one.

Daddy. Please don't go. Please fight.
Oh god, please win.

12-2-05 I miss you like hell

I have the sense to recognize
that I don't know how to let you go.