Saturday, November 19, 2011

So it goes...

The most important thing I learned on Tralfamadore was that when a person dies he only appears to die. He is still very much alive in the past, so it is very silly for people to cry at his funeral. All moments, past, present and future, always have existed, always will exist. The Tralfamadorians can look at all the different moments just that way we can look at a stretch of the Rocky Mountains, for instance. They can see how permanent all the moments are, and they can look at any moment that interests them. It is just an illusion we have here on Earth that one moment follows another one, like beads on a string, and that once a moment is gone it is gone forever.

When a Tralfamadorian sees a corpse, all he thinks is that the dead person is in bad condition in the particular moment, but that the same person is just fine in plenty of other moments. Now, when I myself hear that somebody is dead, I simply shrug and say what the Tralfamadorians say about dead people, which is "So it goes."

- Kurt Vonnegut, Slaughterhouse-Five

Friday, November 18, 2011

heads buried in sand

Since becoming the Octomom to a litter of unplanned tumors in my spine over this last year, my mind continues to bring me back to the writing of one of my previous Live Journal friends, Karen, who died of the same disease. She is in part the inspiration for this blog, because she took the courageous step of writing about her progress and what she suffered up until the very end, at which point her partner took on the responsibility of describing her final moments.

Karen Anne Heinzeroth
September 25, 1973 - June 11, 2006

Karen left a journal to the world that told the TRUTH about every detail of dying, so that other people like herself could actually prepare mentally and physically and know what to expect. Although she was most definitely terminal, she suffered worse I think by all the people who tried to push denial upon her, and urge her to believe in that chance of miraculously living a bit longer. This to me is emblamatic of this society. Why not look death in the face and accept it for what it is--a natural part of life? Why not allow people to peacefully prepare for death, fulfill their last wishes, put their affairs in order, say their goodbyes in a dignified manner? Why do we push people to poison themselves to maximum degree with chemo and "fight" beyond a point in which fighting will make a difference?

This is an excerpt from Karen's journal, not long before she passed away:

"I'm not sure what it is about today that seemed to dawn differently, but something about the air and light coming into my room this morning seemed to be more pure than normal, and it is days like today that really bring my failing health into stark focus just by nature of contrast. Here I am, enjoying this beautiful, unsullied morning, and yet my body is rotting out from under me like an unembalmed corpse. All of this beauty in the world, all of the promise that this days holds...and I have the privilege of viewing it with decaying eyes. Irony is so very fascinating sometimes.

Another day. I get so tired of living this way sometimes. So, so very tired of it. Every day is a battle with pain. Every day is a battle with breathing. And every day is a battle trying to make other people understand this. I know that I wrote lately about the physical side of dying of cancer, but I need to vent about the other side of it, and that's the social side. It's sad to say, but after nearly four years of trying to talk to people and explain to them what's g
oing to happen to me it seems as if I've gotten nowhere. Just...nowhere with anybody."

Read the rest of Karen's entry "Social Truths and Conequences" at:

How true those words are. I've dealt with it for years also. If you look healthy enough on the outside in other people's eyes, they never take you very seriously about the danger of the disease. People spout off miracle treatments and vitamins you need to take, and they turn away and bury their heads in the sand if you speak about death because that is "negative." There is always this pending guilt of possibly creating a self-fulfilling prophecy if you aren't positive minded enough. Cancer patients are often put into the unique situation of feeling somehow responsible for their state.

Karen seemed negative to some people, but what a blessing she left in her journals in telling the truth of what different physical ailments felt like, what medications gave any relief at all. I think she even picked out her own casket. This was an amazing and often misunderstood woman, and I feel her words more than ever, even though it has been several years since she passed. I am jealous that she was able to express her anger, but happy for her. I still have anger that must be dealt with. On this matter she speaks of, I totally understand...

"Everyone, it seems, has some sort of advice on what it is I should be doing with myself during this time of "dying" (if they even have the courtesy to acknowledge that that's what's happening to me), and quite frankly I'm sick of dealing with it. I've spent the past four years making everyone else in my life "comfortable" with my disease, and every conversation I've ever had with people usually consists of me telling them the truth about my situation and then taking the time to make THEM feel better about my news. And perhaps that was my mistake. Perhaps my coddling to these people have made it so that the truth that I told them about my situation rolled right over their heads. It is obvious--OBVIOUS--at this point that I am dying. Period, end of story, just like I said all along. Yet people keep stopping up their ears and expect ME to change. They expect ME to tell them that no, that's not right. I'm not dying. And I want to take these people and just smack them furiously across the face. Denial is the most selfish thing you can do to the dying and quite frankly I've had it up to my eyebrows with other people's selfishness. I don't care that it might be difficult for you to realize now that I'm dying; you had four years of me telling you, and it's not my fucking fault if you didn't listen the first time around. Don't expect ME to bolster your delicate and sensitive feelings now, because I just don't have the goddamned energy anymore..."

My own journey with this disease has been split into three parts, and I have a separate journal for each. It's split up because I wanted to close each chapter of my cancer adventures for good and move on. So the trilogy goes as follows:

Book One: 2004 - 2007 - "Rebel Command" - 1st diagnosis and subsequent surgery, radiation and chemo (Not available to general public at this point, but that may change)

Book Two: 2008 - 2009 - "A Modern Amazon" - 2nd more serious recurrence of breast cancer

Book Three: 2011 - ? - "60 Days to LIVE" - current

Also...for non-cancer topics and all that I am passionate about, there is my Author's Blog:
"Dominique Mainon Author/Screenwriter"

Thank you everyone for your continued support and understanding.

Wednesday, November 16, 2011

a personal apocalypse

Did you know that in December of 2004, the 99942 Asteroid was discovered?

It was later named ASTEROID APOPHIS. Over 1,000 feet in diameter, the asteroid is the equivalent of 90 stories tall and weighs 25 million tons. NASA released the disturbing news in 2004's Christmas bulletin that Apophis will pass within very close proximity to Earth in the year 2029 which will alter its trajectory and give it an alarming chance of crashing into Earth on its return on April 13th, 2036. Apophis broke the record for the highest level on the Torino Scale, being a level 4 impact probability (and about a 1 in 42 chance). For this asteroid to hit anywhere on earth it would generate 68,000 times the force of the atomic bomb that destroyed Hiroshima. 

Coming from NASA, this wasn't just sensationalism. However the news ended up buried that day, beneath the more immediate news of the massive tsunami catastrophe that unfolded over the next day that year. 

Regardless, Apophis is still coming. In Egyptian mythology, Apep (or Apophis in Greek) was an evil demon, the deification of darkness and chaos, and thus opponent of light and Ma’at (order/truth). As the personification of all that was evil, Apep was seen as a giant snake, crocodile, serpent, or in later years, in a few cases, as a dragon, leading to titles such as Serpent from the Nile, and Evil lizard. The Mayans also had a snake god, Quetzalcoatl (the feathered serpent), who is prophesied to return at the end of each Age.

Why am I talking about this? Well, throughout my life I have had intense nightmares about catastrophic events--most often tsunamis, with massive tornadoes coming in second, and then frequent dreams in which there is something terribly wrong with the cosmos.

Scene from Lars Von Trier's Melancholia
My dreams of the cosmos gone wrong have always been the most disturbing, because they involve the foreknowledge that something has gone wrong up in the stars, maybe a planet out of orbit, stars burning out or other impending doom that would end all life on earth. But it doesn't come instantaneously. It is just the terrible dread that over the next days or weeks there would be nowhere to run, nowhere to hide because the earth was off its axis and everyone would slowly asphyxiate or fry or suffer the tidal waves and tornadoes. Sometimes I would be aware of my children in the dreams and that would be much worse because then I would have to worry about how I could protect them from the inevitable.

When I saw the recent Lars Von Trier film, Melancholia, I was hypnotized. He calls it "a beautiful film about the end of the world." It was available via early screening on cable, so I have seen it many times now. However I would love to have chance to see this movie in a movie theater, which is like a sacred ritual to me to engage with the art.

An overturature to Wagner's "Tristan and Isolde" plays as dead birds fall from the sky and a rogue planet named "Melancholia" moves relentlessly towards earth. It is nothing like a disaster film, and it begins with a wedding reception, which is like a puppet show with everyone desperate to play their proper parts as the event unravels (except Justine). Guests go home, the groom leaves his one-day old failed marriage and the few remaining family members prepare for the event. At first everyone is convinced that the planetary event will just be the fly-by of a lifetime, missing impact with earth just as it has missed all previous planets. But calculations keep changing and all too late the false sense of security of a fly-by is gone as Melancholia is caught up in Earth's gravitational pull and slung right back at our planet. The three remaining family members each face their last moments of existence in their own way.

As a person who has suffered from manic depression, I relate so much to the calm acceptance by Justine (Kirsten Dunst) of their fate, which she seems to sense like a clairvoyant. It's funny how you can have a complete nervous breakdown over something others may feel is inconsequential. But when it comes to handling the really big things life flings at you - accidents, deaths, homelessness, whatever, it will be the "depressive" person who may hold everyone together and appear the most calm and composed. Maybe it is something to do with the suicidal impulses that one can have in that state. If you have already craved, contemplated and/or planned your own death (at least in your head, if not on your body), then perhaps you don't fear it the way others might. For me personally, a pending cosmic disaster is one of the best comparisons of how it feels to be aware that you are supposed to be dying of a terminal disease soon, against your will.

The idea of premature death does feel like end of the world. It symbolizes the complete loss of identity and ego. Death in and of itself is obviously very natural and happens all around us, all the time. I think what we are most afraid of (aside from pain and suffering), is the loss of individual identity and complete release of ego. I recently wrote about how ghost hunters, psychics and mediums seem to be the exploding out of pop culture these days. Perhaps we like the idea that our personality or that of our loved ones will endure and still be intact beyond the grave. It's all about us, our bodies, our belongings, our legacies. Whatever we do while inhabiting these sacks of flesh offers some definition of us, some way to categorize us by our similarities and differences to the other sacks of flesh.

I don't want to open a whole philosophical can of worms about personal continuity and the mind-body problem. I just found myself struck with the idea that facing a terminal cancer diagnosis and feeling your body break down bit by bit is fascinatingly similar to watching a rogue planet or asteroid slowly making its way towards our planet. Scientists frantically calculate and recalculate its route based on additional data over time, just as Oncologists kept giving me numbers and percentages of recurrence rates of tumors, with survival dwindling down lower and until we are at full impact range and it's said to be just a matter of time. I wonder if we were to compare facing the personal death to facing a complete annihilation of the world, how many of us would be selfish enough to think, "who gives a shit, if I am not here then why should I care about the fate of everyone else?"

I've always admired how Buddhism addresses death as a transformation, welcoming the change with peace and balance. And yet, I've always wondered, if you took the most Zen Buddhist Monk and put him on an airplane high up in the sky over the Pacific ocean... and then suddenly the captain comes on to announce that the plane has lost power,  the oxygen apparatus pops out and the plane heads into a dive, tearing apart and heading for an inevitable fiery death....
Would that monk scream like everyone else while going down?

How you handle the time you have makes all the difference. So many of us hide our faces when we are scared and seek shelter. Melancholia showed the staggering beauty of even a single moment in time. I don't feel afraid of what is to come as much as I feel inconvenienced by it. But why worry about moments when moments can be stretched and lengthened, just as they can be shortened when you don't pay attention to the fullness of life and just let it pass at ever-increasing speed.

60 days can turn out to be a hell of a long time, if you let it. And I know what I need to do now.

Sunday, November 6, 2011

When I die, will I become a ghost?

I began thinking of the topic of "ghosts" over Samhain, which is probably appropriate. I don't have any particular belief in where we go or what we become after we die. If I can't verify it, what is the use? Maybe I lean bit towards Buddhist philosophy in this area, but overall I subscribe to the philosophy of "I don't know" when it comes to what happens after leaving our physical body. I'd rather have a scientific answer.

However in spite of that, I seem to have an interest in where my ashes will go after I am cremated, which is strange. (I want a good portion of my ashes to be released at the former home of D.H. Lawrence, in the mountains outside of Taos, New Mexico. That was a very special place to me that I will never forget. There is a large tree out front of the main cabin that his guest Georgia O'Keeffe painted. The ground was covered in its pine cones and I took one with me for good luck. I'd like my ashes to fertilize the same tree.)

Back to the topic of ghosts--I've noticed lately that I  can't seem to switch on the TV without coming across some type of ghost hunting show. Many feature psychic-mediums who supposedly communicate with ghosts. One of the latest ones is TLC's Long Island Medium, a reality show which features Theresa Caputo, "a normal mom from Long Island, New York with two children and a loving husband. However, she has a very special gift... she talks to the dead. She spends her days helping individuals find closure from people who have passed and whose spirits that are still around. For Theresa, this is not just her job... this is her life." (See video below)

We also have SyFy's Ghost Hunters series about a group of ghost hunters who are "plumbers by day and ghost hunters by night, working to track down the presence of paranormals across the country.
As leaders of The Atlantic Paranormal Society (TAPS), both Jason and Grant have made it their life's mission to help anyone with questions pertaining to paranormal phenomena and ghost hunting."

One of the silliest ones of all is the Travel Channel's Ghost Adventures, which features Zak Bagans, Nick Groff and Aaron Goodwin -- three guys who supposedly lock themselves in overnight at the most haunted locations in the U.S. and try to provoke ghosts in a number of inane ways while taking EVP recordings and using fancy instruments to try to prove their existence. The recent indie horror film Grave Encounters parodied an episode of theirs inside an old insane asylum. In the film the ghosts get sweet revenge on these guys in a variety of horrific ways.  (See below)

The thing that has really struck me is that as we watch all these shows or ponder whether ghosts are real, we consider it from the point of view of the innocent human being haunted by some restless spirit that doesn't seem to want to "move on to the light" or something. We wonder whether Uncle Bob is trying to reach us from beyond the grave to tell us where his gold is hidden. We respond in fear at bumps in the night or a cold chill in the air.

What starts to change when you realize you may be dying yourself is that you begin to wonder if YOU will be the ghost making the noises, or if YOU will have to look up Theresa Caputo so you can get a message through to your family.  So the kids and I started joking about what I would do if I was a ghost and how they would know it was me. As a result we came up with a bunch of corny phrases and words that I would communicate from the Other Side, so that they would know for sure it was me and no fake medium could come rip them off.

Despite all this, I do believe there are many unexplainable occurrences out there which are quite interesting. A relative of mine from Arkansas has been a county coroner since I was just a kid. She is a medical professional who deals with death constantly, and even she has told us a few stories and seems to have some belief in ghosts. I even have a family picture of myself and the children taken some years ago by Jodeen which has a very strange anomaly that appeared to form over the course of several photos until it was quite large and distinctive. Awhile back I lent the photo to a friend of mine who was in this ghosthunter's club that met on regular basis, just because I thought he would enjoy it and I wanted to see if they could give a logical reason why this anomaly would show up. It even appeared as if my son Liam was playing with the thing during the pictures, as if he was aware of it.

As I should have guessed, the ghosthunter club did not debunk it, but instead they thought it was one of the best pictures they had seen of such a thing. It was suggested the Liam had a "joined entity," whatever that means. I think it meant something like he might have been a twin at one point, which is something that happens more often than people think, but the other twin becomes absorbed very early on. I don't know. Either way, I would still like to get the photo debunked, by some non-ghost believers. I would post it right now, but it is on one of my other hard drives, so I need to hunt it down. I promise I will update and post it as soon as I do. 

The question I have is: if you remove religion and superstition from the equasion, what valid explanation might there be for "ghosts?" Or shall I say "anomalies?"

I believe it is possible that many people have seen ghosts in their lifetime. But just because they have viewed something that they perceive as an apparition, does that make it real? Reality is so subjective. We can hallucinate for one thing. I am very experienced with that due to a childhood malpractice situation in which a doctor gave me an incorrect medication that caused massive hallucinations for days on end. As a child, I didn't even know what a hallucination was, so I could not be aware that what I was experiencing wasn't real. Other people have issues such as schizophrenia, or lesions in the brain which can cause a number of changes in perception from strange smells to strange voices that are utterly real to them. A number of other things can cause temporary changes to brain waves. Notice that there are fewer instances when a number of people see the same exact anomaly at once. Usually it is one person in a party who detects something and then others may claim to see the same thing later.

Either way, I believe the first consideration with ghosts is to verify the physical, mental and emotional state of the person experiencing it. I love reading Scientific American, and I found a couple articles on the subject. This first one discusses exactly what I am talking about--

Ghost Stories: Visits from the Deceased
After a loved one dies, most people see ghosts...
"Researcher Agneta Grimby at the University of Goteborg, found that over 80 percent of elderly people experience hallucinations associated with their dead partner one month after bereavement, as if their perception had yet to catch up with the knowledge of their beloved’s passing."

I am not surprised at all by that statistic. My hospice coordinator left this binder at my house which basically explains (for the sake of others I guess) what events may happen when I go into "active dying" mode. It is supposed to prepare others for the sights, sounds and smells of death apparently. One common occurrence is that the dying person often claims to see dead relatives or friends when it is near their time. I believe that did happen even with my own Grandfather when he died of cancer.

Another more scientific approach is to study electromagnetic pulses and infrasound. It has become commonplace now for ghosthunters to use a variety of speciality devices that they believe can either detect the presence of a ghost or allow ghosts to communicate through the device. Movies such as White Noise popularized the idea that dead people can speak through EVP (electronic voice phenomena). But again, there are dozens of ways of debunking these noises. Auditory pareidolia is just one of them-- a situation created when the brain incorrectly interprets random patterns as being familiar patterns. In the case of EVP it could result in an observer interpreting random noise on an audio recording as being the familiar sound of a human voice.

Back to the idea of EMFs (electromagnetic fluctuation), here is another Scientific American article that tests that attempts to test that theory in controlled circumstances:

Ghost Lusters: If You Want to See a Specter Badly Enough, Will You?
Researchers set up "haunted" room to prove an electromagnetic theory of ghost sightings...

Finally, one of the most annoying things to me are psychic mediums who prey upon people stricken by recent deaths in the family. People who are religious or superstitious may be very susceptible to being cold-read. A smart person can easily cold read certain people and by phrasing everything in questions (Did you lose a loved one who's name begins with the letter D?) they simply dig out emotional hotspots and then assure them that their loved ones are there watching over them or that they forgive them or whatever.

One thing I wish I could ask the "Long Island Medium" Theresa Caputo, is about the whole "going into the light thing." Because I caught an episode in which she did something that made no sense to me. She went to a client's house to "cleanse" it of negative energy and bad spirits. So she took out the handy sage incense and a large feather to give it all a sort of shamanic appearance and walking through the house waving the feather and smoke and telling the bad spirits to move on into the light. She says that negative spirits are ones that stick around a certain place or person and bother them because they are confused or won't go into the light. Ok, fine. But then she does all these readings in which she says, "Your father is sitting right there in that chair and he says...(blah, blah, blah) and he was watching your daughter graduate right there with you!"

The client cries in happiness and off-camera hands over a check I'm sure. The thing I don't get is if all these spirits are hanging around Theresa and bugging her to talk to their relatives, doesn't that mean they did NOT go into the light? Are they still stuck in some earthly realm and restlessly stalking their families? I thought once you go into the light, that's it. Aren't you supposed to be in heaven or your happy place, or being born into another body? So which is it? Are they in the light or out of the light? Or do they get to still talk to their families (via mediums) from beyond the light?

The closest I can get to belief in "ghosts" is not really at all about ghosts, but more to do with alternate dimensions, string theory and parallel universes. The latest studies say there are up 11 or more dimensions. I recall first reading the book Flatland: A Romance of Many Dimensions when it came out and just being blown away. If you haven't read it, then you must. Right now. You can download it for 99 cents.

So the verdict is that I do believe that there is more out there than my human brain can quantify and it is quite possible that within the realms of multiverses there may be skipping, portals, energy signatures and time looping and curling back on itself. That is something worth studying and perhaps it will be more clear one day.

Maybe we do not die at all. If you look at a cloud, and how it produces rain, and the raindrop falls to the ground, and then evaporates and goes back up - do we say the raindrop is dead during each transference to a different element? It is all a cycle. Plants grow from seed, blossom, release many seeds, dye off and become fertilizer for other seeds to grow. So if there is life after death, I figure it is our children. They are part of us and they go on to live. That is more exciting than just an apparition bumping about forever in an old house.

Sunday, October 30, 2011

"I asked myself about the present: how wide it was, how deep it was, how much was mine to keep."

- Kurt Vonnegut, Slaughterhouse-Five

Wednesday, October 26, 2011

Johnny Eck "The Amazing Half-Boy" and Latent Sexuality

I've been thinking about Johnny Eck a lot lately. He's been a hero of mine ever since I saw him in Todd Browning's Freaks (1931)--a film that I absolutely love. I've always found something about him really attractive. Sounds corny, but he had such a sunny disposition and a certain charisma. I think that if he had a lower half to his body he would have gone on to be a good leading man during that time period. You can see the clip of him from Freaks below:

Anyway, I have several books about the history of circus sideshows and many of the most famous characters. As my body has become more and more disfigured over the years from various surgeries and parts being removed, I found a strange attraction to learn everything about about the lives of these performers. Frog Boy, Monkey Girl, The Living Skeleton, The Two-Faced Man, etc all had interesting ways that they responded to their special gifts and curses. Johnny Eck didn't show any regret for his lack of legs. When asked if he wished that he had been born with legs, his reply was "Why would I want those? Then I'd have pants to press."

Two things have made me think of Johnny often of late. The first is a comparison between paralysis of the lower body to just having no legs at all. (Me and my macabre questions!) Which is better?

When people say someone is paraplegic, it is generally understood to mean that person is paralyzed from the waist down. Oh how I wish that was the case with me! I'm actually paralyzed up to the armpits, which is much more troublesome because all the muscles in my core are not operating. I can't hold myself up straight for very long in a wheelchair. And all my organs don't stay in held in place exactly where they should, giving me a warped, bulging shape and pulling at my spine.

So it makes me wonder how much easier my life would be if I had no lower body at all? Dragging around all the dead weight of two useless legs keeps me utterly dependent on others. I'm being held prisoner in my own body, with useless limbs being my human ball and chain. That brings me to the next issue, which is particularly painful--I feel akin to Johnny in the sexual department.

Long before I was struck with paralysis, I viewed some of Johnny's personal art. There were a number of pornographic style drawings found after his death that fascinated me when considering his dilemma. What happens to a person is missing reproductive organs? Or if they don't work at all? Is there still a desire for sex if you have no bodily response at all? I don't mean to imply that all sex requires a penis and vagina. But the reproductive organs as a whole are a driving force for desire. (Or are they?)

I don't actually know what Johnny's situation was for sure. I just know his body ended at his ribs and he was born that way, as an incomplete twin. I imagine on psychological level at least there must have been a massive amount of repression throughout his life, and his fascination with drawing cartoon-like penises seems to show a disconnect from mature sexuality. The pictures below are described on one of his websites, The Johnny Eck Museum:

"These drawings were done by Johnny Eck during the winter months when he was at home for the off season. They date from the late 50's to the late 70's. These drawings are highly sexually charged and offer an insight into the repressed sexual feelings Johnny felt. They also offer a commentary on the negative, changing face of the neighborhood which Johnny had called home for so long."

One of the things that I am bitter about in regards to my situation, is that I feel like I have been ripped off in two ways. The first being that I am paraplegic. Ok, fine, I'm paralyzed. There are plenty of para and quadriplegics out there who deal with their accident or whatever robbed them of use of their limbs and they go on to live wonderful, full lives. The gradually make their homes more comfortable and obtain vehicles. They can exercise and build strength in a number of ways.

But I don't get that consolation prize of life. I cannot exercise because the hospice staff is afraid my bones will break (since the cancer is in my bones and seems to be making me weaker lately). The nurse told me one of her past patients with similar case tried to wave goodbye to her one day as she was leaving, and then toppled forward in agony. Simply waving goodbye caused a number of bones to spontaneously shatter in her arm. They are becoming more concerned with me that my time in the wheelchair is getting risky.

Ok, so that is the first rip off--I have to get a death sentence, in addition to paralysis. The other rip off is that many people who are told they have "X" amount of days to live, end up spending the rest of their time doing the things they always wanted to. Like the Make a Wish Foundation. They go to Disneyland, maybe Hawaii. They can go to another state to see someone's baby born. They get backstage passes and meet-and-greet with a band they loved since high school. They can take a dream cruise.  Those aren't all the things I would do necessarily, but I sure do have a list of things I WISH I could do, some very simple (and yes that does include sexual things). However, due to this stupid paralysis I can't even do the whole Hollywood ending that movies and TV have been promising for years with their tearjerker films about "The Big C." I can't even take a walk on any beach and feel the sand on my feet, never mind Hawaii or Tahiti.

I'm just sitting out here in the middle of the desert, hoping there will be enough money to get a medical transport to Denny's, followed up with an exciting trip to Walmart in the next week or two. So I call that the other major rip off.

But back to the latent sexual desire. I must admit, when facing death, there is usually a massive need to reaffirm life in some way, sex is one of the most obvious. I've felt frantic several times in past, like the night before my left breast was cut off, to just do SOMETHING with the damn thing before it was gone. This disease is so cruel. It chips away at your sexuality, and even your gender identity. In the doctor's care one becomes a hairless, boobless, sexless alien creature. Even my toenails have started falling off due to lack of circulation. I can't even be allowed to have nice feet! WTF?

So I may start drawing cartoon penises soon.
In the meantime, friends, please promise me you will put me out of my misery if I ever start acting like that cancer patient Chloe in Fight Club. I'm sure you all remember...
                           JACK (V.O.) 
Ahh, Chloe.  Chloe looked the way
                 Joni Mitchell's skeleton would look
                 if you made it smile and walk around
                 a party being extra nice to everyone.

Well, I'm still here -- but I don't
                 know for how long.  That's as much
                 certainty as anyone can give me.  but
                 I've got some good news -- I no
                 longer have any fear of death.

     APPLAUSE from around the room.

But... I am in a pretty lonely place.
                 No one will have sex with me.  I'm so
                 close to the end and all I want is to
                 get laid for the last time.  I have
                 pornographic movies in my apartment,
                 and lubricants and amyl nitrate ...

     The LEADER gingerly takes control of the microphone.

Thank you, Chloe.  Everyone, let's thank Chloe.

Tuesday, October 25, 2011

D-Day (Diagnosis Day)

I wrote in a previous post about the last day I ever walked, earlier this year. On that day I didn't actually know what was wrong with me until a couple weeks later when I finally went to the hospital. However, if I would have accepted the diagnosis and advice they gave me on the first day I visited the emergency room....I am quite sure I would not be here even writing this blog today. I had to challenge their initial diagnosis based upon my instinct.

Two events caused me to take the step of going to the emergency room. Aside from latent fear of the cancer returning,  I wasn't enthusiastic to visit the hospital for more pragmatic reasons. First of all, I knew exactly what they would say if I complained about back pain--they would just take my money and then blow me off and send me home with some Motrin. Even though my feet and legs were feeling numb, the real pain was in my back, shooting up my spine. The numbness was just a strange nuisance at that point. I was so busy trying to take care of my kids, run errands, and work somehow in between, that I grew accustomed to being in pain a lot. I would have to be literally disabled before I would stop and take care of myself at that point. And that is what it came down to.

While interviewing a friend of mine who happened to be a nurse, for research on a screenplay, she began watching me with a lot of concern at the way I was moving. I staggered around like I had a wooden peg leg instead of a real one and had to use a cane. She urged me to get it checked out. So I decided to just look up the problem on the internet and see if I could diagnose myself. I was still convinced that if I went to urgent care or anywhere they would just tell me to get rest and take Motrin, like the many, many times before when I sought help. I didn't want to pay money just to hear that again. I've learned time and time again that they simply refuse to do anything for "back pain," and often become suspicious that you are hunting for prescription meds just to get high. However, I noticed online that there was one back pain situation where one should definitely go to the emergency room immediately. That was cauda equina syndrome. If I had that, nerves at the end of my spine were being compressed and if there was not immediate surgical action I could become paralyzed forever. When I looked at the other symptoms for cauda equina, I realized that they matched up with mine. I had just recently had some strange bladder urgency issues. Maybe it was just a UTI, but I wanted to rule out cauda equina at least.

Finally I called up a nurse hotline to try to get a second opinion to justify an emergency room visit. The nurse said that yes, I needed to go directly to the emergency room and I should go to the one in Joshua Tree. Of course I didn't go directly there. I picked up my daughter from ballet class, ran a load of laundry and sent off a couple important emails--just in case by some chance I ended up stuck at the hospital for several hours. Finally I left the kids and drove myself down to the emergency room and checked into triage where I was promptly told to pay a $100 copay.

When the doctor finally examined me, I brought to his attention that I was very concerned that I might have cauda equina compression because of the symptoms I described. I also brought to his attention my history with breast cancer. The last occurence was in 2008, but I had a mastectomy with clean margins and was negative for lymph node involvement. The doctor did a CT scan of my lower body and left leg. He then declared that I just had sciatica pain and that was causing numbness in my leg. He said that it should clear up in 2-3 days and he gave me a small prescription of Vicodin and some antibiotic to treat a possible urinary tract infection. I asked if the CT scan was clear and he replied that there was some little "artifact" showing on my lower spine, but that after consulting with radiology he decided it was too perfectly circular in nature to be anything but an artifact, so don't worry about it. It was the equivalent of a speck of dust on a lens.  I thought he should clarify with an MRI. But he was young and treated me with the dismissal  one gives a hypochondriac who looks up illnesses on the internet and becomes convinced of infection.

I hobbled back home on the crutches they gave me to replace the cheap cane I was using. I was kind of surprised that sciatica could be bad enough to require crutches to walk, but whatever. On one hand I wanted to be relieved. A doctor told me it was nothing serious! So it was NOT the return of cancer and the end of the world! And it wasn't cauda equina.

Oh how I wanted to believe all that! But my mind kept nagging me. Why didn't he give me an MRI? Considering my history, an MRI was in order. Well he didn't because HMOs don't like to pay for those and it's like pulling teeth to get one. I was restless all night, uncomfortable with the way my feet were ice cold to touch and the creepy anesthetic feeling. I just couldn't accept the diagnosis. I've had sciatica issues many times before, and my body was telling me this was not sciatica. I decided to return the next day, to the same emergency room, and just pressure the hell out of them to give me an emergency MRI. I was a little afraid they might turn me away since I had just been discharged the night before. But they were happy to take another $100 from me.

So upon my return the next day I got an older  doctor. He sat down with me as I explained all my symptoms and outlined why I felt an MRI was in order. I was ready for a fight, but he couldn't agree with me more. He was even surprised I had not been given one before, considering my history. So I got my MRI, and then laid on the gurney to wait 2-3 hours for results. Part of me was not happy that I had gone and done this. I felt like bolting from the room and driving home and pretending I had sciatica for a little longer.

The doctor opened the curtain to my cubicle, sat down next to me and told me I had "lesions" on my spine, lumbar area. He didn't have to explain to me that those "lesions" were most certainly cancerous tumors and that meant I had just catapulted to Stage 4 of the disease and that I was likely terminal now. He looked at me and we both knew that I knew what the deal was. I would have to be immediately transferred to the nearest Kaiser facility that had a neurosurgery unit, which meant Fontana.
I said "Ok, I understand. May I please have a Valium?"

"How many milligrams?" was his reply.

All I could think about was my children, and that I hated myself and my stupid body for letting them down. This was the last thing they needed after all they had overcome and dealt with in the last year.  There was a tidal wave of agony inside that would be so easy to give in to and cry for hours. Instead, I reined in all emotion immediately. But there would be no way to function if I fell apart. I told myself I would grieve about it another day, when there was time. (That day still hasn't been fit into my schedule)

I did have one small hope about my condition at that time. From what I understood, the lesions on my spine were small. It was located very low in the lumbar region (and I was right about it being a cauda equina related issue as well). It might be possible to deal with it surgically. I would still be at Stage 4, but perhaps my life could be extended longer that way and maybe more sensation would come back into my legs. With that in mind I made a number of phone calls to arrange for care for my children as the ambulance came to remove me to Fontana. For some reason I only anticipated being gone for maybe a week or two. I had no idea it would be months before I could return home, and that I would returning under hospice care. And just in case everything wasn't bad enough, another set of bad news was coming my way soon...

Fontana turned out to be a waste of time. It was a very old, overcrowded hospital and I wanted out as soon as possible. I was supposed to receive a more extensive emergency MRI while there, but they did not perform that, even after I had an accident due to the clutter of equipment jammed into that tiny room. Three days passed without the "emergency" MRI, and I could feel the paralysis starting to crawl up my legs and set in further, which frightened me. I insisted they send me to their Irvine hospital, so that I would be near my Orange County family, and also where I knew I could get an MRI quickly. Irvine had a beautiful brand new facility that I had stayed in before. But that idea got shot down because I found out that there were only three locations in the entire system that had neurosurgery units. And each one was at the oldest, most primitive facilities they had - Fontana, Sunset Blvd, and Anaheim. I voted for Anaheim, although I had very bad memories of going to chemo in the basement there and hated that location.

Upon arrival there I got my MRI, and then I received the next set of bad news. I didn't realize the first MRI I had out in Joshua Tree didn't even cover my whole spine. As it turned out, those lesions on my lumbar region were child's play compared to what had grown up in the middle of my back in the thoracic area. Those were much larger and developed, and we still didn't know if I had developed a secondary bone cancer or if it was the original breast cancer metastasized into my spine.

It seemed like they should have operated right away, because the paralysis was crawling further up my body by the day. But they messed around for days upon days upon days waiting for various other tests and scans (each with a backlog of patients ahead of me) and then accommodating strange insurance loopholes, such as the one that said I could NOT have a PET scan if I was an inpatient of the facility. I would have to be discharged first and made into an outpatient and then I could come back in a week for my appointment to have my PET scan at the hospital. It was the most insane thing I'd ever heard of. And it resulted in me being discharged in a bad state, dumped into a filthy nursing home where I promptly had an accident again soon after. I was returned back to the hospital via ambulance, with a severe pressure ulcer on my tailbone and they finally magically waived that outpatient requirement and graciously allowed me to stay in the hospital for the next days until my name came up on the PET scan waiting list.

By the time they did operate on me to try to remove or "debulk" the tumors in my upper spine, and perform a laminectomy, I was already fully paralyzed--which means the chances of ever regaining sensation after the surgery are pretty much shot. The surgery only gave my family, or my father in particular, the false hope that it would fix me somehow and I would walk again as soon as they did that. He did not understand that the surgery was merely for palliative reasons at that point.

That surgery was the worst I've had in my entire life (and I have had many surgeries). The pain afterward was so unbearable that I could hear myself screaming at times, but didn't realize I was the one making the noise. The ICU nurses were horrible and without the slightest bit of mercy. They under-medicated me by a long shot and did not understand my tolerance was already high despite constant referral to my charts. I heard all the other people in that ward suffering terribly also for several nights and it was like a scene from the movie Jacob's Ladder. Even when I was finally sent downstairs to the regular ward again, I was so weak that I couldn't even pick up my iPhone. The worst part was that I went through all that for seemingly no reason.

The surgeon could not remove the tumor because it was wrapped right around my spinal cord, and thus impossible to mess with at all. I was now fully paraplegic, and it was determined that I could not receive any more radiation treatment due to the placement of the tumor. It was at this point, when the pathology reports started coming in that the Oncologist visited me and dropped the news that he anticipated I had about 60 days left to live. We were both pretty matter of fact about it. I said, "6o days?? Damn, that's not enough time. You really think that's what I'm looking at?" He nodded, and urged me to wrap up my affairs promptly. We shook hands and he took off to go hand out some more death sentences before his shift was up I imagine.

In the days after, the next epic meeting would come, in which my entire medical team and the social worker came into my room to discuss how I wanted to handle the remainder of my life. I wanted to have that meeting alone with them, as I have always faced all of my medical decisions and announcements alone, without family members that might become emotional and distract me. But I was strongly urged by the social worker to include at least one family member, so I went ahead and allowed my Dad to come. That turned out to be a torture session for my father to listen to, and he had to leave the room a time or two because the news was so upsetting. I don't think he really thought I was terminal. I still hadn't shed a tear over my fate and I was businesslike as usual, taking notes.

I think in the end, perhaps it was good for him to hear the news from the whole medical team so that it would be believable.  Just coming from me he might just think I was pessimistic. To this day he still sends me articles about possible miracle cures. If someone's cousin's maid's friend's stepbrother had any type of Stage 4 cancer and then lived on ten years, I'll be told about it. I don't mean to always shoot him down by pointing out details like the fact that it's a different type of cancer or that nothing about their cases match mine.

As far as death discussions go, that is where it really becomes difficult to speak frankly. I believe that if you know you are like 99.9% likely to die soon due to an illness, it is better to be able to spend quality time with those you love, to be able to say your goodbyes in a fun and peaceful way, and work on overcoming all of the fear related to how things will go down in the end game. Other people consider that to be a negative attitude, and think it is better to deny that outcome completely and seek that miracle cure that must be out there somewhere. There is a lot of burden placed on cancer patients to have a "positive attitude," and though I am all for positive attitude in general, it also implies to many cancer patients that they are failing if they can't keep it up. We often say that people "lost their battle" with cancer if they are die, and I find that rather disturbing. We didn't choose this disease. We are not LOSERS because our bodies eventually give out. The constant denial of reality can stress a person out and have an even worse effect in some cases. It is also a front that we put on to help keep other people from experiencing stress. But why should the cancer patient have to expend so much energy always pleasing other people. THEY are the healthier ones.

I believe that there is strength in facing reality, and then planning your demise on your own terms as best you can. And hey, if a miracle happens and we beat the odds, that is only a bonus. Facing reality doesn't mean denying a possible happy outcome. Look at my case for instance--I have surpassed 60 days, and I am not dead yet. I haven't counted how many days I am past my expiration date, but one could say that each day is a miracle now.

How I actually feel about facing the idea of my own death is probably not at all what you would imagine. There are many layers of feeling surrounding that issue, that are constantly taking shape. I recall long ago before I was diagnosed with this disease asking myself and others a macabre question that I think many have considered at least once in their lives. If you could choose which way you wanted to die, would you choose a long, drawn out (and possibly very painful) death through illness, or would you prefer to die quickly with no warning through a car accident or something similar? Of course the quick death seems much easier. But if you knew you had say six months to live, you could say goodbye to everyone, you could wrap up affairs and make sure family is taken care of, maybe even do a few things you always meant to do before dying. However, you may experience months of massive physical pain, lose all "dignity" (usually meaning loss of bodily functions), and maybe you would not even know who your relatives are by the end of it.

So which is better? Quick death by accident or the long, drawn out one? I'll tell you what my choice would be in an upcoming entry. I'd be interested to know if anyone else has ever considered that, and what their answers may be.