Some Understand I am Weary and Cannot Go On

Thank you, LovesToLaugh, for understanding.  LovesToLaugh is a person on another web site that helps me through this - http://www.dailystregth.org/ .  The treatments doctors have offered so far have been awful, and yet the doctors push me to hurry and make a decision.  All I see is "A decision for what? Dying in pain, or puking my guts out, or running around for several appointments a week when I can barely get out of bed most days, or dying during surgery."  Each option "might" lengthen my time, but the key word is "might."  And the time it gives me, the lengthened time, includes the treatment itself.  If I take chemo-rad for four to six months, I'm sick that four to six months with flu-like symptoms, but I get that four to six months.  So what?  It's a "sick" four to six months, where I am unable to go anywhere or do anything except go to more doctor appointments to get sicker.  I can get laser-gamma-surgery which burns the tumor away, but I get the radiation burn which makes me sick, and it lengthens my time a few months, however that few months is also recovery time from the radiation burn and it's not pretty.  Or I could choose surgery, a resection of my esophagus where they cut it out, move the stomach up, re-sew everything together with a piece of bowel, and then experience a long three-to-six month recovery time without eating and using a feeding tube to the stomach.  Absorbing nutrients after this becomes difficult, plus there is a high chance of not surviving the surgery, of infections following the surgery, of leaks because the tissue is so hard to connect, etc., etc., etc.  I cannot make up my mind without more information and yet, the doctors want me to hurry and just choose one.  I get to choose between dying poorly and worse.  Gee!  Yah, let’s hurry *sarcasm intended*.  

I'm so very, very weary and tired.  I never understood the word "weary" before.  It's much more than tired.  It's a tiredness that just invades the body from head to toe.  People tell me, just get up and get moving and you’ll feel better.  They believe that.  And it irks them when I am unwilling to respond.  I can get up, and get moving, but the energy it takes zaps me so much that it’s not worth it.  If I run a few errands or go to a doctor appointment, it takes me literally two to three days to recover from it.  I’d rather lie in bed. I do exactly what I have to and no more, and that little bit is so exhausting it makes me want to die sooner.  My time is coming.  Maybe I just need to let go now.  I’m only here now because I want to spend some end time with my baby (a 19-year-old Marine) who gets the month of April for emergency leave to come see me.  We’ll finish adult adoption papers while he’s here, an adoption of him by my husband, his stepfather.  Then I’ll hang on a little longer to attend my baby brother’s wedding in May.  He’s coming to Las Vegas for the wedding, just so I can attend.  I get to see him happy with a new wife who really loves him.  I want to die after that.  I was hoping to make it to New Year’s but I can feel in my body that it just will not happen.  The only regret I have is I will not live to see my own last baby (my Marine) marry and have grandbabies.  I wanted so much to hold and love his babies.

New Appointment for Surgery Consult

I'm meeting with a local surgeon for a consult on Friday morning.  It's recommended that I not get the surgery in Nevada if the doctor may feel I am eligible, but at least I'll have some more useless information to add to the multitude I have already.  I also have an appointment Monday with a doctor about gamma-laser surgery which would be the burning away of the tumor with radiation involved.  Again, more useless surgery.  My oncologist recommends chemo-radiation without surgeries.  I get contradicting recommendations and cannot make a decision.  One says surgery only is the best shot for longer time and it would be without sickness but long recovery time.  Another recommends a long bout of chemo-rad with long term sickness but longer time.  Another recommends just the chemo-rad and being sick but longer time followed by surgery.  Do any of them really know what works or are they all just guessing at my expense?  I am so depressed all the time that I can barely function.  I need to run around and round up all these records and CDs and photos of the procedures and I'm just too tired.  I need to fill out tons of paperwork for each consult, and I'm just too tired.  Plus it's hard to care.  The doctors tell me this is all just palliative care which means comforting while you die.  So, really?  Who cares?  I really just want to die.

Update - March 28, 2011

A nice surprise when we got home today.  There was a small package on the porch from Amazon.com, my wish list.  Someone had sent me the book, “Hope in the Face of Cancer.”  I didn’t see a card with it and no name of who sent it.  But thank you very much.  I’m reading it now.  These little glimmers sure help.

I'm hanging in here.  I want to see my Marine son this next month.  He arrives on Friday.  It was a bit iffy there for a while about getting his air fare.  Something Obama was not doing was delaying his paycheck.  I think he had to approve a budget or something.  My son borrowed enough for the ticket from a staff sergeant, and will pay him back out of his next check.

I've been so exhausted lately.  I have a hard time even getting out of bed. It's probably because I'm not getting enough nutrients because I eat so little.  It's painful when I eat.  I swallow and then it feels like the food gets lodged in my chest.  The place where it feels like it lodges is quite painful.  The doctor says the pain is the food trying to get past the tumor which has almost completely closed the opening.  I try to eat soft stuff, but even liquids seem to lodge against the tumor.  I eat slow, little bites, chewed very thoroughly, until I tire out and then I sleep some more.

I made myself get up and go out for a short time Saturday morning.  It was my father's 80th birthday.  He's not doing real well either.  In addition to his dementia the doctor tells me he now has a heart valve that is not functioning right.  My dad can feel there is something wrong, but the doctor knows to assure him everything is alright, and it's just his age.  With his dementia, any bad news including my cancer, can make him intolerable to be around.  He just focuses on it with a vengeance, over and over and over, worrying it too death.  Only a person who understands dementia can understand what this is like.  His leg swells now, and he tires much easier.  This requires more care from all of us, something that I do not have enough left to give.  I went out and bought a cake, took him to the nursery to look at plants, and then sat with him under the tree in the backyard for a while.  Then I went back to bed.  That's my full routine lately.  Dad notices it but I chalk it up to getting old, which he understands all too well.

I spent the next day and half in bed recovering from the spent energy, and trying to get some food down to give me some energy.  I have so many things to do, so many little things, not of such importance, but they certainly need done.  I need to fill out paperwork for another consult appointment (ten pages - gawd it's awful), and turn in paperwork to a few locations for possible consideration for assistance (which I dread cause it means hours of sitting in hard chairs in a noisy room, so tired I just want to die), go buy diapers and some groceries for the baby, do a little laundry, etc.  The doctor prescribed me some Ritalin, which helps a little.

Today, I dragged out and had my husband take me to some thrift stores.  We needed a toddler stroller and second car seat.  The stroller we have was okay, usable, but the lock for the wheels was broken.  We bought it second hand two years ago and it was worn out.  The lock on the wheels is important because I have a hard enough time getting him out it without it rolling when I’m alone with him. I usually have to take him to doctor appointments with me.  The first stop was the Salvation Army store on Lake Mead, the warehouse.  They had lots of things but no strollers at all and the only carseats were for infants.  Since we were right by the freeway, we jumped on and went across town to check out the newer Savers store on Decatur and Sahara.  We lucked out.  Only the second stop and we found both a stroller and a carseat.  The stroller was ten dollars and the brakes worked, but it was very dirty.  We’ll clean it up.  The carseat was eight dollars, also dirty, but we’ll clean it up, too.  Glad that’s done.  Oh, and we also found two pair of shoes for him, just $2.50 each.  I hated spending the money but it really was necessity.  We tried to fix the old stroller, but my husband is about as mechanical as a cat.  Again, I was so exhausted when we returned.  Went right back to bed.  I hate that.  I want so much to spend time with the baby.  He keeps asking to be with me.  He keeps asking for “Nana.”  But he’s so hard active, and his little feet and hands hurt so much when he pounds against me. He doesn’t mean to but he really hurts me physically when he plays with me.  So he spent the day with Papa and a friend of my son’s who is here to visit with him this month, too.

That’s all today.  Tired.  Going back to bed.  Anyone have some recipes for healthy energy drinks or energy smoothies?

The Sunset Limited

This is undoubtedly one of the best movies I have ever seen.  It has not changed my mind about suicide, but it sure touches all the areas that lead you toward suicide.  What a great movie.  Take time to watch it.

From Wikipedia:
The Sunset Limited Plot
The play involves only two nameless characters, designated "White" and "Black", their respective skin colors. Offstage, just before the play begins, Black saves White from throwing himself in front of a train, the Sunset Limited. All of the action takes place in Black's sparse apartment in urban New York, where the characters go (at the behest of Black) after their encounter on the platform. Black is an ex-convict and an evangelical Christian. White is an atheist and a professor. They debate the meaning of human suffering, the existence of God, and the propriety of White's attempted suicide.

'The Sunset Limited': Is Tommy Lee Jones' HBO film the greatest Cormac McCarthy adaptation?

by Christian Blauvelt

Categories: Television

Image Credit: Dawn Jones/HBO

“Two players. Two sides. One is light. One is dark.”

John Locke could have been describing Tommy Lee Jones’ new HBO adaptation of Cormac McCarthy’s relentless 2006 play, The Sunset Limited. If you think that’s a reductive reading, check the script. Jones’ suicidal college professor is simply named White, while his savior, a man of faith played by Samuel L. Jackson (and a spiritual cousin to Jules Winnfield), is called Black. Essentially a 90-minute conversation in a Washington Heights tenement taking place in the immediate aftermath of White’s suicide attempt at a subway station, The Sunset Limited plays like a talky condensation of McCarthy’s great theme: How do we create meaningful lives in a chaotic world where God is silent and death is inescapable? But instead of a Western, Southern Gothic, or post-apocalyptic novel, he gave as a verbose, urban-set play, something Bergman would like (if Uncle Ingmar had had an interest in anyone but the haute bourgeoisie).

It’s fascinating to see the conversation between Jones and Jackson ebb and flow like a game of verbal ping-pong, one holding the intellectual high ground one moment, the other the next—My Dinner With Andre as a game of philosophical brinksmanship. Jones’ timorous atheist runs a whole emotional gauntlet from initial humiliation and despair to smug self-assuredness, and man of faith Jackson somewhat the reverse. If The Three Burials of Melquiades Estrada didn’t already convince you that the man can direct, Jones’ take on Sunset Limited proves his directorial skill. Instead of opening up McCarthy’s play, he embraces its claustrophobia, focusing on little sensual details like the flexing of a hand, swirling coffee in a mug, an orange peel on a counter-top, a trumpet’s muted honk wafting through the walls. Jones’ professor has forgotten that it’s these little details that really make life worth living, and so, like ze tiger in ze zoo in Werner Herzog’s Madeline, he thinks death is his only release. And to McCarthy’s credit, he doesn’t ever let the professor see the light. Maybe, like Woody Allen in Hannah and Her Sisters, he just needs to see Duck Soup again to go on living.

Where do you think The Sunset Limited falls on the McCarthy Meter of Cinematic Excellence? Just okay like The Road or an outright masterpiece like No Country for Old Men? I clearly vote for the latter. To help get you thinking, though, we assembled a list of Sunset Limited’s best lines:
McCarthy channeling Tarantino:
“I’m just studying the ways of professors.”
Channeling Charlie Kaufman:
“I ain’t got an original thought in my head. If it ain’t got the scent of divinity to it, I ain’t interested in it.”
Channeling Left Bank existential dread:
“The things I believed in no longer exist. It’s foolish to pretend they do. Western civilization finally went up in smoke in the chimneys of Dachau, and I was too infatuated to see it. I see it now.”

Channeling the ultra-violence of Blood Meridian:

“I reached out and got ahold of this table leg, and it come off in my hand just as easy. Had this long screw stickin’ out the end of it. And I went a wailin’ on that nigger’s head. And I ain’t quit. I ain’t quit. Till you couldn’t tell it was a head no more. That screw was stickin’ in his head and I had to put my foot on him to pull it out.”
Channeling the ending to The Road:
“I think whatever truth is wrote in the pages of this book is wrote on the human heart too and was wrote there a long time ago and will be wrote there a long time hence.”

Channeling Will Ferrell’s grace from Talladega Nights:

“Lord, we thank you for this food and the many blessings we have received from your hand. We thank you for the life of the professor you have returned to us and ask that you look after him because we need him. I don’t know why we need him, I just know we do.”
Channeling Travis Bickle:
“This place is a moral leper colony.”
Channeling himself:
“I sure do miss the music.”

Okay - Good Things, I need to find good things to see

I'm going to list a few good things.  I have to have some good things in my life.  So many bad, bad things ... some good, just a little ...

(1)  My Marine son gets to spend a month with me - even though it's just time for him to say good bye to me.
(2)  My helper, my husband's niece, almost got a job last week.  The good thing is it fell through so she could continue to help me with the baby two days a week for a couple hours a day, while her uncle works. But I feel bad wishing she would not get the job because I needed her.  She's a single mother, only 19, with a four year old.
(3)  One good online friend has continued to stay in contact with me.  She is a dear.  She hangs in there through all my whining.

That's all I have, and it makes me cry again because I cannot find anything more to add.

Too Depressed to Post - Sorry

I'm sorry.  I've been crying a lot and just too depressed to post.  You really don't want to read this because I am depressed and it will be depressing.

And on top of being depressed, I was so sick yesterday.  The pain in my throat where the tumor rests just above my chest bone at the top of my stomach has been so bad, but the pain medication for it and the pain medication for my fibromyalgia seem to help - at least enough so I can stand it.  But yesterday I hurt so bad and was dizzy and nauseous all day.  I wondered of I overdosed a bit mixing all those drugs together even though the doctor said it was okay.  I have bad reactions to many drugs but I've taken all these okay.  But maybe just got too much.  Others with this type of cancer have told me they cannot eat at all.  I don't understand that.  My tumor is huge.  I finally saw pictures of it after my EUS, March 17th.  The doctor says it will eventually totally obstruct my esophagus so that no even fluids will pass.  He said it looks almost completely obstructed now and wondered how I was eating.  But it's weird.  It's not like the other said.  Maybe that's due to my high pain tolerance or where the tumor is located just above my stomach opening.  Some days I can only do instant breakfasts.  I try to drink four or five in one day when it's hard to get them down.  But swallowing is not the problem nor is eating.  The problem is not when I chew and swallow food.  Sometimes the food feels like it goes down fine - especially if it is soft or slick foods like shrimp (not breaded), or noodles, or mash potatoes or cream of wheat.  But when I eat something like bread or bread texture, or just about anything solid now, even if I chew it too death, it goes down most of the way and then it feels like it gets stuck, hard and painfully stuck, right in the spot where they put their hands to do CPR on your chest.  It hurts so bad it bends me over.  It feels like someone reached in my chest, grabbed my heart and twisted it hard as they could.  Really!  I know it sounds weird, but that's what it feels like.  And even though I've named a few foods that are soft, sometimes even the soft foods do it.  It's like hit and miss.  Some days I make it okay and others, everything I eat hurts.  I try to drink fluids to wash food down but the fluids seem to stop right on top of the food obstruction, and I wind up choking and coughing and drowning in the fluids.  I get really, really hungry sometimes and just want to eat something solid, but most of the time, I just have no appetite at all because I know it's going to hurt.  My doctor is constantly on me to keep eating and keep my weight up.  I was doing good for a while but now I've lost ten more pounds.  He says to eat calorie rich foods, but anything calorie rich seems to be painful to get all the way down.

The depression of not being able to see anything good come about and the feeling that I'm slowly slipping away now, is just taking me over.  We were trying to get my Marine son a ticket to come see us, but his pay is messed up.  I think he said it had something to do with Obama not signing a budget bill or something.  He can come see me for a month, for emergency family leave.  The whole month of April.  I am looking forward to that.  So, we are pulling everyone together in the family, $10 here and another $10 there, to get a ticket.  Last I talked to him, he said he might be able to hitch a ride with guy who is headed to Pendleton.  But that means I lose about 3-4 days off his time with me.  I'm hoping they will get the pay thing fixed before his schooling ends on April 1st.  I keep saying over and over - What else can go wrong?  And something else goes wrong. 

Is there no end to this?  Is there no end to all this misery and bad, bad, frigging awful luck or fate or whatever?  Or do I have to end to make it end?  Everything seems so hopeless.  I am forcing myself out of the house this week to something other than a doctor appointment.  I'm really going to try.  Just please - pray that no more bad things get piled on me while I try to step out past this depression.  I need a good thing to happen.  I need some good things to out weigh and cover all this negativity.  I hate needing things.

Sad, Depressed, Hopeless

I desperately need something to grasp onto.  I have my grandson's legal guardianship papers underway.  And I'm working on my son's adoption papers by his step-father.  I have nothing for myself.  Nothing to hold onto.  And swallowing is becoming painful and difficult again.   I have another procedure Thursday that will hopefully relieve some of the swallowing pain.  I feel totally hopeless, and without motive to live.  I just do not know what to do.  I am holding on to April to spend an emergency leave month with my youngest son, who is a new Marine.  And the first two weeks of May, hoping to see my brother get married for the second time to his girlfriend of 2 years.  After that, nothing.  Even holding on to that seems bleak and useless, but it's a goal of some sort.  I so very much need something good to happen in my life.  It seems like one bad episode after another.  I cannot even begin to list all the bad events, that have happened and continue to happen.  If just one good thing could come, it would mean so much.  But it doesn't come.  We just get straw after straw piled on the camel's already broken back.  Just when I think I can't cry amymore, another disaster piles on and I cry some more.  I keep screaming, "Help," but I am unable to tell anyone how to help, and no one answers the cry any way.  What does anyone do to deserve such anguish and torment? Help me.  I cry it over and over, but it falls on deaf ears.

On Top of Everything Else

They just keep pushing the gun closer.  I keep thinking it CANNOT get any worse.  But IT DOES.  I just feel like FATE or God or whatever you want to call it, is telling me to wrap it up.  Life dealt me crap and I better get use to the idea and move on.

My husband's job is now in jeopardy because he dared to go with me to UCLA.  I was sick, the baby was sick, and I just didn't think I could manage it alone.  Since I went into a complete break down there, I was glad he was with me - at least until yesterday.  My husband was scheduled to work only Friday and Saturday, March 11 and 12 this week.  His last day of work last week was Sunday night, March 6.  As far as the schedule was concerned, he was off Monday 7th through Thursday 10th.  My husband was an ironworker with prior food server and gourmet busser experience.  Construction is dead in Las Vegas and we are told there will be no jobs in construction for up to five more years.  So, my husband applied for every food server position he could find.  He took one of the only jobs offered to him, a lesser position of gourmet busser, in order to provide for us.  The position is not a full time or even part time position - it is an On Call position.  We found this job after 360 job applications, followed by only 6 interviews, and one offer.  Las Vegas is hit hard by the political rip-off of the middle class by mortgage companies, stock market, bankers, the rich and politicians who just want us to go away and die off.  Well, looks like they get their wish!  My husband found a position at a casino hotel.  We were so happy.  My husband is so diligent and a real hard worker.  He looked at the schedule the week of my UCLA trip and then asked him manager if she minded if he was out of town Monday, but definitely back on Tuesday, since he was not on the work schedule for those days.  She seemed a bit aggravated, but really could not say much since he was not scheduled, so she made note of it and thanked him for telling her.  But such things come back and bite you.  You see, my husband will be on probation for his first ninety days.  We are only 30 days into that probation.  During the probation, they can dismiss you for anything or nothing.  They can even say, they tried to call you in but you didn’t answer the phone.  I know it doesn’t sound fair, but they don’t care.  On Thursday, March 10, my husband was called in for an extra day of work.  We were happy.  We need the money.  But when he got to work, he was informed that two days were added to his schedule after he left Sunday night, March 6.  They added Tuesday and Wednesday to the schedule, knowing he was not going to be coming back in and then did not even bother to call him about the change.  This tells us the manager was unhappy about him not being readily available for work every single night.  According to his co-workers, it looks like this casino restaurant has a history of letting new hires work until the last week of probation and then using the excuse they could not get hold of them for on-call to let them go.  Now we are just waiting for the dismissal prior to probation.  Something else for me to stress about.  More crap for us to eat!  Why us?  Why do things just keep getting worse?

I'm glad I'm wrapping things up.  It’s like the only stress relief I can find.  I’m moving forward to the end.  I found a paralegal who will type of the Guardianship papers for husband and my grandson and the adoption papers for my husband and son for $200.  I'm selling absolutely every single thing I have left to pay for this and get it done.  My clothes (don't need but two outfits now, one to wear and one for cremation), make-up (who needs make-up), luggage (never going to travel again), outgrown baby toys and baby clothes, high chair (he can sit on a chair to eat), all extra furniture including the kitchen table and chairs (we can sit on the sofa to eat), my few last keepsakes, frames, junk to most people but memories and treasures to me.  I'm stripping the walls bare.  My wedding ring’s gone and nothing else means as much as that so who cares.  I’m even considering selling the mattresses because we can sleep on the box springs or buy some cheap-ass broken down mattresses for replacement.  I don't need any of these things because your memories and treasures do not go with you when you die.  Nothing goes with you.  All I care about now is final arrangements.  I need to make sure this is taken care of.

It’s so sad watching my husband slowly die along side me.  We sit and talk and talk and try to figure things out, and we come up with nothing.  He even tried to accept a second on-call job with another casino.  You see, with casinos, you have to list every single place you’ve worked or work for the background check.  If you lie, no job.  When he said he was working on-call for another casino restaurant, but would go with them if it meant more hours, or possibly work for both – they said no way.  We want you exclusively or nothing, and we cannot promise any set amount hours, so nevermind.  I know he is so depressed, too.  He wants to take care of me and he feels like he has failed.  I tell him it’s not his fault that this all happened when the economy took a crap.  He knows it’s true, but that doesn’t keep the tears from his eyes.  Someone asked me if I discussed my insulin overdose ending with him.  Yes, I have.  We decided it together.  He does not want to see me suffer in pain, or die while puking myself to death in a bucket, or watch me wither away to nothing through starvation.  Someone else asked if I tried treatments like chemo-rad yet?  I’m not a viable candidate for that due to my Meniere’s Disease and other problems.  I have severe reactions to almost all medications so chemo is not really an option, and UCLA blew my chances at a surgical consult.  Like I said – money talks, bullsh*t walks.  If you do not have money, you die.  One guy said Medicaid has taken care of him and wanted to know why it won’t take care of me.  I live in Nevada.  Getting Medicaid when you are married or have any miniscule income is unlikely.  Even then, Medicaid will not pay your expenses to go out of state to get surgery.  My oncologist tells me that surgical removal of a tumor my size is a death sentence if performed by Vegas doctors.  So you tell me – what would you do?

These are my plans.  They are logical and based on all the facts about my cancer and situation.  I will make all the final arrangements I can including the adoption and guardianship because these bring me a small measure of peace of mind.  I will continue on for a couple months or weeks until I cannot swallow anymore.  During those weeks, I will take my grandson to the park to play; go to as many free events as I can with my son and family and husband; save every penny I can and put it in the bank without my husband’s knowledge so he’ll have a little tide over when I go; and when it gets close – when the swallowing becomes very painful and my weight loss increases – I will spend a last evening with everyone, maybe rent a couple movies like Lion King and Two Weeks, followed by a good laugh with HangOver.  Then when everyone leaves, I’ll spend a few hours with my husband, and then send him away, take a heavy insulin shot and go to sleep.  I’ll have a suicide note with me so no one thinks my husband or anyone else was involved.  All that’s left is to call MedCure.  I get to choose my last minutes - not the uncaring doctors in this world.

People have asked me what would be needed to convince me to hang on a little longer.  Wow.  A change of luck!  Not having to eat anymore crap!  No more bad things being piled on me when I am so over loaded all ready.  How about a day time, full time food server job for my husband with a casino restaurant with culinary insurance?  That way we could use day care for my grandson when I’m gone and not worry about insurance coverage for my last months.  How about ONE measly good thing to happen for us?  Just ONE!  But that’s just wishful thinking.

Services for adult adoption and minor legal guardianship?

As you know from my blog entry March 9, 2011, regarding my horrible UCLA visit, I am now putting my final arrangements and life in order so I can leave everyone without so much guilt.  Two things I'd really like to finish off are legal issues.  I have a grandson of whom we have had temporary guardianship since he was born.  We'd like to make that legal guardianship now because my husband is a step parent and the papers have always been in my name.  We don't want any legal issues to arise that may prevent him from taking care of our grandson simply because he is not a blood relative.  Second, my husband would like to adopt my adult son to be legal his.  My son is a Marine and they both have wanted this since my son was only nine years old.  My son's father would not agree to it.  Now that my son is an adult, he can get this done without his father being involved at all.  These are things I would like to see done before I die.

The legal guardianship will cost $900 if done by a paralegal.  Maybe someone could donate that service to me?  The adoption will cost $2500.  Maybe someone could donate the service for me.  Both are non-contested, everyone willing to sign papers in agreement, and if someone could just do the paperwork, I would be quite happy to file it myself.  Please!?!

What Cancer CAN do

What Cancer CAN Do

Cancer is not limited...

Cancer can hurt you and your loved ones.

Cancer doctors can string you along with empty words.
It can cripple love.
It can shatter hope.
It can corrode faith.
It can eat away peace.
It can destroy confidence.
It can kill friendship.
It can shut out memories.
It can silence courage.
It can reduce eternal life.
It can quench the Spirit.

Cancer kills you and leaves your family crippled.

Cancer is hopeless.

The people who might be able to save you only want your insurance money and could care less about you!

Only people with money and insurance get a chance to be saved from cancer!

It Should be a Crime to Waste the Time of the Dying!

My Horrible UCLA Appointment

Horrible, horrible, wrongful appointment!  It should be a crime for a doctor to waste a dying person’s time.

Prior to my UCLA “surgical” consult appointment, my LV oncologist and I discussed treatment options for my cancer.  I opted for surgery without chemo/rad.  Just surgery if it were possible.  The UCLA appointment was suppose to be a “surgical” consult, so the surgeon could tell me if I was an eligible candidate for surgery.  My LV oncologist told me they would need the EUS procedure done prior to the consult.  I wrote about that scheduling nightmare with the EUS doctor’s incompetent staff in this blog.  I still have not had the procedure.  I also read that the surgeon would probably want to see the PET/CAT scan and EUS on CD and have a copy of the results, and have copies of the biopsy slides.

That is why I was surprised when UCLA called me so quickly to schedule the consult (which was still scheduled three weeks out).  I specifically told the scheduler I did not have the EUS yet, and asked if I was able to do the consult without it, plus I asked if a CD was okay for the media of the tests, and that I needed time to gather those and the biopsy slides.  The scheduler told me I did not need to gather any of those because the doctor already had received the results, and not to worry about the EUS.  I was a bit relieved.  I figured the CDs and biopsies must be sent via computers or emails, so patients don’t have to gather them.  That was a real relief because I have been so sick with a cold and don’t have the energy for such things.  UCLA even sent me advance paperwork to fill out and seemed to be very organized.  What a joke!  What a laugh on me!  What an idiot I am!

So, I diligently saved, begged, borrowed, sold things (including my wedding ring and my mother’s wedding ring – she died in March), and did everything I possibly could to accumulate $500 for the trip to UCLA.  That trip involved paying someone to take dinners to my dad for two days, three tanks of gas, overnight at a cheap motel ($95), meals for two days, replacement of a jacket for the baby because someone stole his out of the stroller at the doctor’s office, co-pay for the appointment, $13 parking fee at UCLA, and a tire replacement (someone slashed the side of our tire at the motel).

How did the appointment go?  Things went very bad.  I tried to make sure UCLA had everything they needed prior to my going to the appointment, and I was told they had everything they needed and I only had to bring my paper packet they sent to me ahead of time.  I thought they were well organized, but found out they just wanted to milk my insurance out of more money before I die.  I arrived only to find out they made a mistake with the appointment.  My appointment was set for 1:30pm, which if it went correct and on time, we might miss the rush hour freeway traffic back to the motel (45 minutes away so we could get cheaper rates), if we could get out of the doctor by 2:30pm.  Sounded reasonable – they get to go a full hour over on the appointment over booking time and we could still miss rush hour.  Of course, the appointment was late – very late.  We didn't see the doctor or get out of there until 3:30pm.  So unacceptable.  Wasting the time of a dying person. 

Then the worst of the worst.  They wasted my only funds, the last of the money I will ever have that I begged and borrowed and sold out for, to go for a very important "surgical consult."  They wasted it.  And now we will never have money to return again and have them do it right. 

This doctor visit to UCLA was suppose to be a surgical consult, and instead, they set me up for a second oncology opinion.  I did not need that.  I did not need or want a second opinion on what I already knew!  I was very clear about it.  My LV oncologist thought that was what this appointment was for.  I needed to speak to a surgeon about whether surgery could be an option for me.  We wasted almost $500 on travel, food, problems, overnight accommodations, parking fees, etc. only to find out we learned nothing more than we knew before.  The UCLA oncologist understood that I was noticeably upset by this mistake.  It was hard to miss!  I threw a crying fit and called them all negligent non-caring assholes.  Plus the UCLA oncologist tells me a surgeon needs to see the CD of my PET/CAT scan and the EUS.  I asked them about that before they scheduled the damn appointment, and they said they had it all, but now I find they do not.  Plus the EUS was never done.  I told them that, too, and they said it would not be a problem, come for the consult anyway.  The dumbass UCLA oncologist, knowing I was pissed off and beyond upset, knowing I was pissed because UCLA dropped the damn ball - offered to make arrangements for another appointment with the surgeon the following day, if we could stay another night.  Yah, money grows on trees.  We barely managed funds for one night, and now he wants me to cough up enough for another night and meals for another day.  And if I can stay a couple days, they may even be able to schedule me for an EUS.  He says, “At least let me get you a surgeon to talk to.”  I told him, "You said the surgeon needs to see the CDs of the tests to make decisions and I needed the EUS first, which you told me before I came I didn't need, so what is the bottom line here, will the surgeon need these to tell me what I need to know, which is a lie?"  He tells me the surgeon could still talk to me.  He does not answer my specific question about the surgeon needing the things he told me he would need for that type of consult.  That means I can still talk to someone who will have no answers for me because they lied about the preparations I needed to speak with a surgeon and they lied about the appointment, and they set up the appointment with the wrong person.  That means they want to sooth me by letting me talk to the surgeon who will tell me the exact nothing they already offered because he can’t tell me anything more without an EUS and CDs of the tumor.  That means waste more money, stay another night or longer, and pay them for another consult, that tells me absolutely nothing more than I already know.  I told Mr. UCLA oncologist to shove it up their asses, they were not getting any more insurance payments out of me, and I hoped he ends up with something life devastating so he could see how he made me feel. 

On top of all that, we then had to leave right in the middle of rush hour LA traffic, and it takes over two hours to get back to the motel when it took only 45 minutes to get there.  I cried the entire two hours.

So, now that they have wasted the very last of my resources, these were my options:  Take chemo/rad for four months, puke myself to death, and then maybe surgery to remove tumor (around August), with three to four months painful recovery, followed by another chemo/rad for four months, puke myself to death, and then maybe get a year of life over it - but I'm sick the whole time.  But this is not an option because my insurance runs out July 31st, prior to any date for surgery.  Right now I get 2-6 months without it, more likely on the short side – and get this – the UCLA oncologist is telling me that I am going to die a sufferable painful death, that is very ugly if I choose to just die without treatments.  That’s what I need to hear!  Especially after he has wasted my last resource for the information necessary to live longer.  That miserable non-caring son-of-bitch. 

I don't have anymore funds to go back to UCLA for their mess ups so they kind of decided my fate for me.  I'm going to take care of my final arrangements, set things up as best I can for my husband, and use my insulin for an overdose when I cannot swallow food anymore, which is coming soon from what Mr. UCLA oncologist says. 

Doctors do not care enough about the dying to help them.  They just want to milk my insurance without regard for me.  So, I will have my family around me for a final night of dinner together, and then send them home and overdose.  I do not have the strength to deal with doctors’ incompetence and rip offs.  This will be my last correspondence to you and the others.  I'm doing this write off on my blog page and that will more than likely be the last entry there.  Maybe I will make one last note the night I die and let others know how to do a good suicide when doctors f*ck you over. 

I wish I could have used that $500 they wasted for a nice night out on the town or to take my grandson to Disneyland, or for one last happy time of memories before I died, but UCLA and the doctors stole it with deceit, incompetence and slimy rainbows of hope, so I can't even do that.

Thank you for reading these posts, and trying to be a friend.  I'm going to be very busy now closing out my life and setting things up for my husband and grandson, and then gone. 

UCLA Appointment is Today!

It's 2am in the morning on Monday, March 7th.  I'm headed to UCLA today for the cancer surgery consult appointment at 2pm.  I can't sleep.  The anticipation is too high.  I'm hoping they will approve me for the surgery to remove the tumor but I really feel awful and anxious because my fear is that they will not do the surgery or they will say it is only "salvage surgery".  I'm very stressed.  It's a long drive, expensive with gas prices so high, and I'm sick with a very bad cold.  I've been in bed for two days straight, and don't look forward to this exhausting trip.  I know I've lost more weight.  I'm guessing ten pounds or so.  I was told it was very important to keep my weight up for the surgery and I haven't even been able to do that.  We found a fairly cheap hotel for a one night stay over.  I don't think I could do a round trip without some rest in between - although if we get bad news I may want to just hurry back rather than waste another precious day away.  But I shouldn't think about that.

It's so sad.  My husband was crying yesterday.  He asked me how much bad luck can be heaped on us all at once and continue for so long?  Why can't we get some good news?  I know how he feels and there's nothing we can do about it.  I want to make him feel better, but I can't.

Doctors Screw you with Cancer

I get so frustrated with doctors.  When you have cancer they go on and on about how imminent it is to make your decisions about treatment quickly and get the treatments started right away.  Then they screw up appointments, move appointments, and put you off forever, or make you sit in their offices for hours at a time wasting your very shortened and precious time.

I was very pleased when UCLA called to set up my consult appointment.  I thought it showed a degree of compassion and organization skills on their part.  But when I tried to choose an appointment date, they put me off for more than two weeks.  This was just for the consult.  So I waited on pins and needles, wanting to get the consult over with, hoping that they would do the surgery.  I know I’m not a very good candidate for surgery, so it’s stressful waiting for an answer as to whether they will or will not do it.  Just two days before the appointment, the call and reschedule it.  When I spoke to the person re-setting the appointment, they talked about another date several weeks down the road.  I responded with, “I’m told how important it is to get this taken care of quickly, and told I only have about 2-4 months to live without surgery, and you want to put everything off until after I die?”  I guess it hit a point, because they gave me Monday, March 7, as the new date.

It’s so frustrating.  I understand patient confidentiality, but shouldn’t the appointment setter be told when an appointment is for someone who is dying very soon?  I really hate this.  I try to be just a little bit optimistic, and their lack of care just shoots it down.  Each of these centers tout how much they care and how they are geared for their patients to give them hope and light, or at least a gentle caring passage.  Bullsh*t.  They don’t even care enough to get your appointments set and stick with them.  They don’t even care enough to stop overbooking patients so you don’t wait two hours for your appointment.  And can you believe this – they charge fees to sign papers for DMV handicap cards, or letters stating your diagnosis for Social Security or Disability, or anything.  The fees range form $50 to $100 a paper.  It’s just another fee on top of al the crap and nonsense you have to go through just to get proper care and have some income support while you die.  It just plain sucks.

And the waiting and running are the worst parts.  You waste your life waiting and running around trying to get a better quality of life during your last few weeks of life.  It just sucks.