A Mistake of Epic Proportions

Well, it's been awhile.  No time for catchup.

Today I discovered I'd been taking only a THIRD of the amount of Xeloda I'm supposed to be taking.

I thought it was 1 500 mg. pill, twice a day.  In reality it's 3 500 mg. pills/day, twice a day, for 6 total:  1500 x 2.  I've blown my own head off.

When I called to check and make sure, the oncologist said to be sure to tell me "not to worry.  It won't change your outcome."

Well, of course not.  The "outcome" is near certain death, and I'd forgotten that.

Now I'll be sick, too, because of a mixup.  No wonder I've had so few side effects.  Now I will, but it won't change the outcome, will it?  Why bother?  Because I'm afraid.

Newsweek With More Good News

We Fought Cancer…And Cancer Won.

After billions spent on research and decades of hit-or-miss treatments, it's time to rethink the war on cancer.

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Four decades into the war on cancer, conquest is not on the horizon. As a somber statement on the NCI Web site says, "the biology of the more than 100 types of cancers has proven far more complex than imagined at that time." Oncologists resort to a gallows-humor explanation: "One tumor," says Otis Brawley of the ACS, "is smarter than 100 brilliant cancer scientists."

Mood, Attitude Darker

The past few days my mood, attitude, outlook, has gotten darker, more negative, much less (and that's an understatement) optimistic.  Near as I can figure, I have about 3 more weeks until I begin chemotherapy.  The list of potential side effects are depressing, to say the least.  It's even crossed my mind a few times, more as a dark blip than a complete thought or plan, to tell them all to go to hell, load up on Morphine, and just die.  But I don't want to die.  Yet, no matter what anyone tells you, the truth of the matter is that there is NO cure for phase IV colon cancer.  I read an article last night in which the advent of FOLFOX 4 was trumpeted with absolute glee because it extended life for phase IVs to an average of 19.5 months from a previous treatment's 14.8 months.  MONTHS!!  Friends and neighbors, I am not long for this world.  Tara began high school this year, and I had set my goal as living to see both kids graduate from high school, which would be 45 months; the cold hard truth is that seeing Ethan graduate, in 21 months, is probably unattainable.  I am dead man walking and feeling it more and more.

The visits have tapered off.  The phone calls have tapered off.  Near as I can figure, David fucking MOVED to Tuscon without coming by and letting me see him, possibly one last time.  I'm stuck here, still healing from the surgical tear (and it is healing), sitting in a LaZBoy or lying on the couch, feeling that I'm wasting what's left of my life, yet unable to find the motivation to do anything about it.  Not that I could do much, but go sit on the front porch, enjoy the sun ... that I could do but don't.  I'm chainsmoking again, an ominous sign, knowing full well the harmful effects of it, yet, truthfully, thinking (most of the time), "fuck it, I've already got cancer, what does it matter if I smoke?".  And what does it matter?  Really?  

At this point, I'm in fairly good physical health ... scratch that ... a ridiculous statement for one in the final stage of a killer cancer.  I'm feeling fairly OK physically.  My appetite is good and I'm eating well, determined to enjoy the taste of food while I can.  I have regular bms, although lately it's oily and mucousy and dark green.  I don't have any symptoms of any other cancer, although it's already metastisized, according to Loukas.  I still tire very, very easily.  I still have trouble sleeping, or getting to sleep.  But I don't feel particularly sick.  The vagina-like tear in my belly hurts, slightly (3 on a 10 scale), more than it has, but it's healing and the skin is knitting back together so that's the pain.  My mind is clearer than it has been since some time in July.  But the chemo is creeping up, and that is when denial ENDS.

And I think I have been in denial.  Kubler-Ross' 5 stage of grief are:  1)  Denial, 2) Anger, 3) Bargaining, 4) Depression, and 5) Acceptance.  I think the woman was onto something even though she later in life denounced it.  When I reacted, in the hospital, with hallucinations and paranoia and conspiracy theories, it was a form of denial.  The drugs played a part, yes, but in all my paranoid constructions, the first few days especially, conspirators had cut my stomach open, removed my appendix, and LIED to me that I had colon cancer.  It wasn't true, not in those fever dreams, not in those constructions of my mind; so I didn't have to deal with it.  Then, when I got out, I assumed (as nobody told me different) I had stage III, which had something like a 44% survival rate after 5 years, and I could accept that, at the time.  More or less 50-50, and I was all gung-ho and ready to fight.  Then, 2 weeks later, I was told I'm phase IV and, brothers and sisters, the air has been let out of me.  I have a less than 5% chance of survival after 5  years, and I'm going to have to go through chemical hell to attain it, if I do.

Oh, I can put up a formidable front, and do most of the time.  Most people who've seen me would be surprised at this entry.

Then there's the money.  Yeah, I got the indigent care, and I'm greatful for it (even though it's ego-shattering).  I have a telephone interview with the Social Security people this Thursday, for SSI and Medicaid.  But I'm pessimistic about that.  I'm naturally, by habit or nature, pessimistic about everything; to me, that glass is so almost empty.  Truth is, without my mother to think about, I think I very probably would lie down on a bed somewhere, beg for morphine, and to be gone by Christmas.  And I may very well be.  If/when it spreads.  From an infection caused by the drop in white blood cells from the chemo.  From the original cancer.  There's just no telling.  My attitude needs to improve, though; I need to bullshit myself, or something.  Because I'm feeling as black as the blackest night.  For days now.

Another List of FOLFOX Side Effects

Common side effects

 
Many people have one or more of the following side effects when having FOLFOX

• Fatigue – for some people this is the most troublesome side effect of all.  Tiredness often carries on after the treatment has ended.  Most people find that their energy levels can take at least 6 months to recover sometimes longer.         
• Numbness or tingling in the fingers and toes happens to nearly everyone having oxaliplatin and is usually worse if you are cold.  You may have trouble doing up buttons, for example.  This can come on a few days or a few weeks after treatment and usually goes away within a few months of the treatment finishing         
• Feeling or being sick happens to about 7 out of every 10 (70%) people who are treated with oxaliplatin, but is usually well controlled with anti sickness drugs         
• Temporary drop in bone marrow function leads to the following side effects

- Increased risk of getting an infection.  This is due to a temporary drop in the number of white blood cells produced by the bone marrow.  A low white blood count means that you are unable to fight infections and can become very unwell.  You may have headaches, aching muscles, cough, sore throat, pain passing urine or feel cold and shivery.  Infections can sometimes be life threatening. You should urgently contact your doctor if you think you have an infection.

- Tiredness and breathlessness.  This is due to a drop in the number of red blood cells made by your bone marrow and is called anaemia.  You may need a blood transfusion to treat anaemia.

- Getting bruises more easily. This is due to a drop in the number of platelets produced by your bone marrow.  You may have lots of tiny red spots or bruises on your arms or legs.  You may have nosebleeds or notice your gums bleed after brushing your teeth.

• Pain in the vein during the infusion of oxaliplatin or folinic acid.  Sometimes the drugs may need to be given more slowly       
• Soreness and redness of the palms of the hands and soles of the feet (sometimes doctors call this ‘hand and foot syndrome’ or ‘palmar-plantar’ syndrome)       
• Diarrhoea happens to 6 out of 10 people (60%) - tell your doctor if it becomes severe, if you cannot drink to replace the lost fluid or if it carries on for more than 3 days. Your doctor may give you anti diarrhoea medicine to take home with you after chemotherapy         
• Sore mouth happens to 4 out of 10 people (40%)         
• This drug may have a harmful effect on a baby that is developing in your womb.  It is not advisable to become pregnant or father a child if you are having this drug.  You should talk about contraception with your doctor before having the treatment         
• Loss of fertility  - we don’t know exactly what effect these drugs may have on your fertility. It is important to talk with your doctor before starting treatment. Women may stop having periods (amenorrhoea).  This may be temporary.

Occasional side effects

 
Some people may have one or more of these side effects

• Sensitivity to sunlight - you should not sit out in the sun if you are having this chemotherapy: cover up or use a sun block         
• Brown marking on the skin following the line of the vein where the chemotherapy has been injected         
• Hair thinning         
• Brittle, chipped and ridged nails         
• Gritty eyes, blurred vision or watery eyes from increased production of tears  

Rare side effects

A few people have one or more of these side effects

• Difficulty swallowing or breathing - this only happens in 1 or 2 people out of every 100 treated (1 to 2%) because the oxaliplatin affects the nerves to your throat.  It is usually triggered by cold weather and can happen in the first 5 days after you have the oxaliplatin infusion.  Although this usually clears up on its own, you must tell your doctor if you have this side effect.         
• Ringing in the ears (tinnitus) - happens in about 1 in 100 people (1%) treated and usually gets better after your treatment is finished         
• Allergic reactions happen to about 1 in every 100 people (1%) treated while the oxaliplatin is going into your blood stream.  Tell your nurse if your face goes red,or have an itchy rash, feel faint or feel short of breath.  Your nurse will watch for signs of allergic reaction while you are having the treatment.

One Woman's List of FOLFOX Chemo Side Effects

Side Effects of FOLFOX 
(Oxaliplatin, 5-Fluorouracil [5-FU], Leucovorin)

This is a list of all the side effects I experienced while on FOLFOX:

• Severe fatigue. I was unable to recuperate between treatments by the time I hit my 8th treatment / cycle.
  
  
• Bouts of insomnia after each chemo cycle.
  
  
• Low red cell blood count - Procrit shot brought up my counts. Procrit really stings, especially since it has to be a full 2 minutes to give.
  
  
• Low white blood cell count - Neulasta shot brought up my counts. This too stings, but not nearly as bad as Procrit.
  
  
• Runny, drippy nose. Have tissue handy at store checkout counters!
  
  
• Dry cough
  
  
• Weight gain (due to steroids in pre-meds)
  
  
• Jumbled speech
  
  
• Clumsiness -- frequent falls
  
  
• Memory lapse.
  
  
• Headaches.
  
  
• Thinning hair; then balding. Yep, balding. Not very common with Folfox, but of course, I get to endure balding. I fixed this by getting my head shaved and wearing wigs in public. I'd rather not wear a wig, but I wear one so as not to embarass my husband and children or bring attention to myself. When I'm at home, the wig is the first thing to go -- then the shoes! You can see photos of my balding head and wigs. My hairstylist and other chemo patients recommend trying Nioxin. It's to be rubbed on the bald or thinning spots and voila! Hairs magically sprout where there was none.
  
  
• Nausea. Alleviated by taking Phenergan pill at the earliest onset of nausea.
  
  
• Vomiting. This only happened during the first cycle. I was given more anti-nausea pre-meds from then on.
  
  
• Lack of appetite. This only happens during each cycle (3 days every other week for me). And most of the time, I can only stomach carbohydrates.
  
  
• Body aches and pains. I notice more flu-like symptoms with joint and bone pains soon after I get a Neulasta shot every other week.
  
  
• Arthritis. My right hip and lower back hurt when I stood or walked for a length of time. This only started soon after my 10th cycle of chemo. After undergoing x-rays, I soon learned the pain was due to arthritis -- bone-to-bone contact -- from the steroids as part of the pre-meds I received prior to each chemo treatment.
  
  
• Severe cold sensitivity. I have to wear gloves to touch cool silverware, soda cans, clothes from the washer; to get anything out of the refrigerator or freezer. When cutting up meat from the fridge or freezer, I would have to constantly run my hands in warm to hot water to alleviate the pain caused by the cold temperature of the meat. Hurts to swallow cold water -- even at room temperature! Also, cool water on chemo tastes disgustingly metallicy. Hot decaffeinated green tea is my favorite drink on chemo. Feels like my throat is closing up on me when I attempt to swallow anything cool
  
  
• Hand cramps.
  
  
• Numb fingers, hands, toes, feet, legs, tongue and gums.
  
  
• Sharp pain in jaws at the first bite of anything.
  
  
  
• Face cramps. Sounds odd, but my face would scrunch up in weird contortions in the cold winter air. I would have to blast hot air on my face before stepping out of my car. No snow-skiing this winter season!
  
  
• Severe eye pain when watery -- this started when I was on my 9th treatment. It feels like ice cubes pressing on my eyeballs! Not that I've ever done that to myself, but that's what I'm ASSUMING it would feel.
  
  

List of drugs administered to alleviate cramps, nausea / vomiting, neuropathy, and cold sensitivity:

• Quinine -- alleviated leg and foot cramps.
• Phenergan -- anti-nausea pills.
• Calcium/Magnesium IV drip (part of pre-meds) -- supposedly hindered neuropathy and cold sensitivity
• Calcium, Magnesium, and Vitamin C -- daily supplements. I really don't know if the supplements helped or not. However, I can't imagine the neuropathy and cold sensitivity to be any worse!

Uh-Oh

Overheard my mother talking tonight to a family friend who's visiting us tomorrow.  She said, "Oh, and bring your camera.  I don't have any recent pictures of Tim".  

And about a week ago she was talking to me about, when my incision heals up, having photographic portraits taken.

My shrine is being built and I'm still quite warm.  I can't begin to explain how this feels.

Nobody means any harm, of course not.  Yet I can almost feel the scythe hanging over my head.  20% chance.  Hell, I don't blame her for wanting photos.  :(

For the 2nd time in a few days, I caught myself recording a movie onto DVD for my "library", wondering what the hell I was doing this for, and hit the stop button.

FOLFOX & Oncologists

The specific chemotherapy they want to give me is called FOLFOX, and there are some very hairy side effects.  Here:

Dr. Loukas will be my oncologist, that has been decided.  He's apparently satisfied now that he will be paid, after yesterday.  Sherman spoke to him, too, and he can be damned persuasive.  However, I won't receive the chemo at his clinic.  He'll refer me to Shivers, where I'll actually receive the "treatment" every 2 weeks.  God help me.  God help me period.

Bird, Plane? No! It's Indigent Man!

We got it. And the kind lady made it retroactive to August 1, so ALL the medical bills will be covered, even the $1200 ambulance bill. Submit them (bills) to her by the 25th of every month and the coverage will roll over to the next month. So I can have chemo in Austin, possibly with Dr. Loukas as my oncologist, at his clinic. If not, the Shivers cancer center. But it's one or the other & the state of Texas will pay all bills. And there's a tremendous drug discount, and she threw in food stamps since neither one of us are in all that great shape, to put it mildly.

I'm grateful, relieved ... and feel a bit guilty about receiving public assistance. I'm a bit surprised by that. Later.

Is the fact that this page is black a revelation from my subconscious?

Hospital Hallucinations & Paranoia

Been thinking some more about all this, and I've decided that a major factor in my delusion that the doctors and nurses and all hospital employees were actors, or nefarious kidnappers, who cut me open and tried to sell me a lie while holding me against my will ... was the 1st stage of Kubler-Ross' 5 stages of grief. It was Denial. In addition to the trauma, the drugs, the anasthetic, it was a way of coping. If I believed I'd been kidnapped and cut by Boris and Natasha, then there was no cancer. You dig? Now that my mind is fairly clear, I think it's obvious. I couldn't stand the shock of it and my mind made up a conspiracy story which, as scary as it was, was easier to deal with than the truth.

I've got to remember to call R.M., the lawyer, for calling him 2 days after surgery and begging him to get me out. Then again, he probably deals with loons all the time.

Fear And Loathing In The Night

I can’t sleep anymore, or it’s very hard to get to sleep. Ever since last Wednesday (and, truth be told, the Tuesday night before because I feared what came), when I found out this cancer is Stage IV, I can’t sleep until 5 or 6 a.m. Which I can’t afford to do tonight since I have a 10 a.m. appointment with (get this name): The Texas Department of State Health Services County Indigent Health Care Program. Sounds rather bureaucratic.

Where: I am the indigent. Three degrees and I fucked things up so bad that I have stage IV colon cancer and have nary a penny to my name, not even a car anymore. It’s a long story and maybe I’ll tell it at some future date, but it does not make me particularly proud of myself. And, I confess, nor does it make me feel particularly deserving of public assistance to pay for my chemo at age 54 after screwing up my life. My mother feels I deserve it, so I’m going along with her, but I keep thinking of some poor, dumb schmuck, or some child, or some woman with child who can’t find two pennies to rub together and needs prenatal care, or some poor dumb schmuck who is exactly in my shoes, but who has lived a more fruitful life ... I was all gung ho, “I’m going to fight this thing and win!” when I got out of the hospital. Not anymore. Maybe I’ll get it back, but I’m pretty down on myself these days and wonder what the fuck is it worth trying for? Surely there are people with better odds and better lives than me. Not that I want to die or even think about it, but ... I was stupid enough to blow my health insurance so maybe I should pay for it. Certainly a political conservative would agree with me. Granted, I was SICK; Major Clinical Depression is a sickness and I would argue ad nauseum for anyone with said disease to get any and all benefits they qualify for. But not for me. Such is the state of this mind. It’s depression, is what it is; that and a lot of confusion and self-hate and truth mixed in. But I still can't put that puzzle together.

So I’m whining. This is my blog. I’m trying to be honest.

Anyway, I’ve got the indigent program people to meet with tomorrow, in the county seat of my county. B.J., an angel of a home health nurse, is giving us a ride at 9 a.m., for a 10 o’clock appointment. I’ll never get to sleep in time so I just decided to stay up. Maybe it’ll make me look more pitiful ...

What a selfish cad I am! Tell you another thing: the shirt and jeans I’ll be wearing tomorrow are from Walmart and Chinese dirt cheap. Indigent-looking, one might say. So I’m a crafty cad who feels guilty all at the same time. What a piece of work. And I’ll BEG the woman, if necessary, I will. Some people would call this behavior Gemini; I call it me, all confused and still, at 54, not knowing exactly who I am.

IF I’m approved for this program, I’ll get the chemotherapy I need. But I don’t expect to be approved. 1) Because of my habitual bad luck, and 2) Because the social workers at the hospital told us that they would probably reject me, but if I had a rejection notice on paper I could then use that to get into the program; they’d have to take me. I don’t understand it, either. Have to take me as the hospital ER had to take me w/o health insurance.

Which bring up yet another tortuous dilemma that’s been torturing me lately: At what point do I let my mother have all these bills pile up before I pull the plug and refuse any and all treatment? I can see that day coming, very soon in fact. Of course, she won’t have it. She’ll scream bloody murder and beg me to keep going, no matter what the cost out of pocket, and it could cost everything very quickly.

Fuck that. I can’t handle that thought right now. I just can’t. One thing at a time, one hour at a time. Indigent health care today. Someone cynical might tell me, “look pitiful”. Hey, I don’t have to act these days.

More craft: I'll look more pitiful after staying up all night. (You said that, cancer guts!)

Hey, all joking aside, I have monsters in my lymphatic system, looking to overwhelm normal cells in every organ of my body and kill me. That's pretty pitiful all by itself.

Sherman

Went to the clinic today to talk w/ Dr. Sherman.  Actually, I went there to talk to K. Sherman, my friend first, as well as my doctor.  There's a difference, and getting those roles right, which one to play, while at the clinic is always awkward.  I've been employee, patient, friend.  With both doctors (Dr. Biel is still on vacation in Colorado), my rule is to address them as "Dr." when there are others around and/or when being treated as a patient or employee, but I slip and slide in the first name a lot anyway.  Never mind.

So the first thing he does is check my "wound", the vagina-shaped (well, it IS!) cavern below my navel, on my surgery scar.  Great, he says.  It looks great.  It's pink and healing.  It's been hurting a lot lately, at night, when I'm prone, and I guess that's knitting together, healing pain.  It's not bad.  I've been lucky, so far, with pain.  Post-surgery, I've had very little pain anywhere.  I must have had a lot when I was in ICU, with a trigger for the morphine, but I don't remember it.  Anyway, this wound is doing fine.  He packed it with gauze while talking to me.

I had a notebook full of notes with questions to ask him, but I couldn't reach it while he was packing and talking (he has a way of talking and commanding the room, and you are hesitant to interrupt him; the man has always had such presence).  It was all awkward.  He was playing the role of doctor, and I could tell he was struggling with roles himself, and sadness over my stage IV cancer diagnosis, but he had to hang in there and be the authority, not the friend.  And my mother's friend.  So we "played" doctor-patient pretty much the entire visit.  There wasn't anything "light" to talk about, anyway.  I have had trouble falling asleep since last Wednesday when I found out I'm fighting stage IV; that's just all that is on my mind when I lay down to sleep.  So I needed a sleeping pill and he wrote a prescription for Xanax 1 mg.  Since I've been off Xanax for 10 years, when I went sober in rehab, this should work.  We'll see.  I really don't need to lie there thinking about dying, or treatment, or woe is me.

Sondra (of all people) called last night and suggested I try M.D. Anderson in Houston, a charity program.  Others have mentioned this, as well.  Sherman shot this down fast and hard.  He said they wouldn't take me.  He said they'd only take me for a clinical trial sort of deal and I didn't need to be testing drug companies' medication for them at this stage.  He said he'd always had very bad experiences with M.D. Anderson in attempting to get patients placed there.  He said to forget it.  And then he repeated the word "Medicaid" over and over and over.  You need to get Medicaid.  You don't make enough so you should qualify, blah blah blah.  But they could turn you down, blah blah blah.  (I know this; the insurance situation in America really is a disgrace.)  But ... Medicaid Medicaid Medicaid.  They might even bump up the process since you're stage IV.  Very businesslike, trying to keep his emotions in.  Me, too.  Go through Social Security, get Medicaid, they'll pay for everything.  Get disability from SSI, you'll get checks (snap) like that.  But maybe not.  (Jeez, I'm up, I'm down, emotionally)  MEDICAID, Tim!  He must have said that word thirty times.

I'd misplaced one of my diabetes drugs between the hospital and home, so he wrote a scrip for that.  I told him my appetite had been real good, been enjoying food and was "eating like a horse".  He frowned.  He said that's not good for your diabetes.  What are your sugars like, Tim?  I don't know, you knew I was poor and fucked up and never gave me to told me to get a home levels tester.  What were they like in the hospital?  Not awful, around 130, maybe.  Were they giving you insulin in the hospital?  Yes.  Ahhhhhhhhhh .... trails off.  (He's really rattled, trying to be so businesslike.  Me, too.)  

So I make my move.  Hey, K., I'm really having trouble with all this.  I mean, I think I'm coping really well, at least outwardly, but I'm sooooooooooo afraid, and so angry, and so depressed.  I can put on a brave face but I really need someone to talk to, and you used to counsel me with the agorophobia and panic attacks and it helped.  I know I can't PAY you now, but ... We've always had a rapport, ya know?  He leaps, too, surprising me.  Nods his head, yeah I'd be glad to.  I know you must need someone to talk to.  (leaves room to check his schedule; comes back)  Listen, Tim, Thursdays you can be my last patient, at 1:30; I can talk to you for 45 minutes every Thursday.  Great.  This man helps; I'd rather talk to him than any shrink I can't afford.  So we're going to do counseling.  Only this time the bear is real.  With panic attacks, I was having panic/fear reactions to a bear that wasn't real, a bear that wasn't in front of me, fight or flight, but there was no reason for the fear.  I had to learn to deal with that.  This time the bear is real, and it's inside me, swimming in lymphatic fluid, looking to invade my brain or lung or liver or whatever looks good.  And the odds are that I'm going to die of this.  Real bear.  Yeah, I need counseling.

Medicaid Medicaid Medicaid, you hear me?  Yeah.

He's going to call Dr. Loukas, the oncologist I saw.  He's going to call Dr. Fuller, the surgeon.  There's a golf ball-sized benign but ugly tumor on the back, left-side of my fucking head ... it started as a cyst-like thing in 1990 but it's grown to ugly size.  I haven't asked but my thinking is it's somehow related to the cancer, because the huge growth has only been in the last year or so.  Anway, Fuller says he can take that off in 10 minutes when he installs the catheter under the skin, in my chest, for the chemotherapy treatments I'm still trying to obtain somewhere, by some means.  Jesus, I want to cry, I really do.  Hang on.  OK.  Anyway, Sherman's going to call Fuller about that, too.

OK, well, I'll see you on the 11th of September for counselling.  What?  The 11th?  Only day I can do it.  Shit, I have a telephone appointment (yeah, telephone) with the Social Security people on the 11th of September at 12:30.  Shit.  So I won't get counselling from Sherman until the 18th, 16 days from now and I may crack up by that time, but nothing is to be done for it.  I have several friends still living, although I wouldn't want to burden any of them with the horrors that are inside me.  So, hang in there until the 16th.  I can hang if I have to.  I'm trying.

My mother still freaks out if I even mention driving, so a friend of the family picks me up and takes me to the library, where I check out 3 cancer books and find that I have a $31.90 fine from 3 years ago (has it really been that long since I've been to the library?  Dude, you haven't been ANYWHERE in the past 2 years.)  So I pay it.  Go home.  Report to my poor, worried mother, who has lost every single member of her family except me, in her hover chair, doing more than she should.  Turn on Howard Stern.  Type this.  Fuck it.  If only there were a nice, comfy hole to climb in and hide.  If only.

Fun With Web Reading

Been doing a lot of reading lately, mostly on the web, and have been encountering stuff like this fairly regularly:

"The cancer research arena has reached a sorry state of affairs. The tiniest increase in the survival time or median time to progression of drug-treated cancer patients is touted as a cure.

One example is the clinical reality for metastatic colorectal cancer. The FDA-approved combination regimen of irinotecan, bolus fluorouracil, and leucovorin (IFL) plus Avastin increases median overall survival by 4.7 months.

This small increase comes with a host of side effects, which impinge upon the quality of life, as well as placing a burden on the patient, as well as the healthcare system.

The clinical reality is that there is no cure for metastatic colorectal cancer. The much-vaunted blockbuster drug Avastin is simply an antibody supplement incorporated into an already complex chemotherapeutic drug regimen that may slow down the cancer process depending on the genetic constitution of that individual.

The clinical reality for metastatic breast cancer is similar. The treatment with Herceptin followed by lapatinib and capecitabine only increase the median time to progression from 4.4 to 8.4 months. Furthermore, 70% of patients do not respond to Herceptin, and resistance develops in virtually all patients.

The sobering fact remains, both advance diseases remain incurable, which contrasts with the glowing reports on Avastin and Herceptin emanating from the financial and tabloid media.

What are the responses of government agencies and academic institutions to this clinical reality? Yes, progress is slow, it's a complex problem, but we are moving in the right direction.

If billions of dollars are poured into DNA sequencing of primary tumors, then we hope to find the critical mutations that cause cancer and then make drugs so that each patient can have a unique treatment.

The major problem with this is the primary tumor is so heterogeneous that each cell within it is likely to have a unique genomic signature at the level of mutations, as well as at the level of gross genomic imbalances and methylation signatures.

And the cells that will be dangerous to the health of the patient and depart to other organs make up only a minute fraction of the tumor. They are also genomically different to the cells in the primary tumor.

Which of the millions of mutations, methylation changes, and gemomic imbalances are in the cells that leave the primary tumor? This cannot be ascertained by bioinformatic and statistical methods. It involves isolating the cells that depart.

Also, which of the genomic alterations that are in the departing cells will be instrumental in the process of subsequent metastatic growth? Most of the cells that lease home don't survive the journey in the blood or lymph systems, and many cancerous cells that eventually do lodge in a distant organ simply remain dormant.

It would seem more prudent to invest in the development of diagnostic technologies for detecting cancer growths, as well as the properties of cells that are destined to metastasize.

When the front-line treatment for solid tumors is still chemotherapy (cytotoxic or targeted) and radiation, and the best that blockbuster drugs can achieve is to prolong the inevitable by either a few months or not at all, then it's surely time to stop the delusion.

Personalized cancer cures are not just around the corner and carte blanche DNA sequencing will produce just that - carte blanche. Is the future of cancer medicine one in which doctors become financial advisors, telling their patients whether they can or cannot afford expensive treatments of dubious survival value?

The solution is to get back to using old fashion human brainpower to develop noninvasive screening technologies for detecting the earliest possible cancerous growths. Resources and intellectual horsepower need to flow into areas that have clinical impact.

Source: George L. Gabor Miklos, Ph.D., Philip J. Baird, M.D., Ph.d., "Curing Cancer: Running on Vapor," May 1, 2007 edition of Genetic Engineering and Biotechnology News."

Sad truth is that I probably should be researching hospice for those with no money, rather than chemo with no money.

I've been down all day. Just can't get going. If I were rating negative on a scale of 10, I would go for at least an 8, and I hate that. But truth is truth.

Oh who the fuck cares? Too many ...

I hate the American media.

Sitting here watching Obama give his acceptance speech, or trying to. Keep getting sidetracked. Now I'm wondering if I'll even be around on January 20th (my beloved grandfather, Mott died on that date), when the new president, Obama or McCain is sworn in. That's all I can think about. I'm self-obsessed. I guess cancer does that to you.

No, well, I'm worried about my mother. She is so tired and has been through so much, and now she's got me to worry about. I made her say yes to going to see Dr. Lovering tomorrow, and I will drive her myself if I have to. Dr. Fuller, the surgeon, whom I also saw yesterday, told me I could drive short distances if my "mind is clear" (that's a loaded question of late; someday I'll tell that story). Basically he was referring to the confusion and hallucinations I suffered in the 9 days in the hospital. I guess. Anyway, I'll drive her if I have to. She needs care. So much to worry about, so little time ....

Oh, now Obama on national health care. I've never really believed his heart was into that issue. I hope it is, and I hope it happens, but I don't see how we can pay for it. We're trillions of dollars in debt! One thing I know: I won't benefit from it. If it ever happens, I'll be ashes in an urn lying at my parents' feet, my soul maybe flying around a heaven with all those I love who have gone before me (gad, I'm really an agnostic ... shudder). Or I'll just be nothing, a pile of ashes down there with the worms. Or, knowing me & my luck, I'll be one of those confused ghosts who can't figure out they're dead and/or can't find the light to walk into. I'll be like Vincent Schiavelli (I miss that guy) in "Ghost", all angry on the subway. If we had a subway.

But I won't benefit from universal health care. No, I'll be gone by then. I don't want to think about being "gone" ... What did George Carlin say? Something like, "but I won't have to die ... I'll 'pass away' ... or I'll 'expire', like a magazine subscription. Shit. I hate think about this. I'm a movie guy, so when I think of death the oddest image comes to me: Arnold Schwarzenegger as The Terminator being lowered into the iron in 'Terminator II', his hand up in goodbye, and then the screen just going black. Except I won't see the screen go black because my consciousness will be gone. Or will I? I have a videotape I've never watched, out of fear and superstition and obsession/compulsion or some such weird, freaky aspect of my nature .... a documentary miniseries that was on PBS or something a dozen years ago or so ... called "Death: The Trip Of A Lifetime". Maybe I should dig that out and watch it. Nah, not yet. There's still a battle to be fought. A battle with lousy odds but a battle nevertheless, and I have to try. I just have to. Like sending up your worst hitting pitcher as a pinch hitter, like somebody with an .050 average. But, hey, he has a CHANCE to come through! A lousy chance but a chance. So I'll sign off on that positive note. I have to try to stay positive. I have to. Positive. Positive. Spurn negativity. That dude, that Kyle Lohse, Cardinals (3 for 51 ; .059), has a CHANCE to sneak a single through that infield. You never know.

Peace.

A winters day
In a deep and dark december;
I am alone,
Gazing from my window to the streets below
On a freshly fallen silent shroud of snow.
I am a rock,
I am an island.
Ive built walls,
A fortress deep and mighty,
That none may penetrate.
I have no need of friendship; friendship causes pain.
Its laughter and its loving I disdain.
I am a rock,
I am an island.

Dont talk of love,
But Ive heard the words before;
Its sleeping in my memory.
I wont disturb the slumber of feelings that have died.
If I never loved I never would have cried.
I am a rock,
I am an island.

I have my books
And my poetry to protect me;
I am shielded in my armor,
Hiding in my room, safe within my womb.
I touch no one and no one touches me.
I am a rock,
I am an island.

And a rock feels no pain;
And an island never cries.

Company

Famous people diagnosed with colorectal cancer

* Lynn Faulds Wood, former BBC Watchdog presenter, survived advanced bowel cancer and founded the charities Beating Bowel Cancer and Lynn's Bowel Cancer Campaign. [55]
* Tony Snow died July 12, 2008 at the age of 53. [4]
* Ruth Bader Ginsburg
* Tammy Faye Messner died July 20, 2007
* Audrey Hepburn died January 20, 1993 [5]
* H. P. Lovecraft, horror writer
* Harold Wilson [6]
* Pope John Paul II [7]
* Ronald Reagan [8]
* Elizabeth Montgomery, American Actress (died at age 62; died 8 weeks after being diagnosed with colon cancer. see [9])
* Charles Schulz, Creator of Peanuts (died at age 77; died 60 days after being diagnosed with colon cancer) [10].
* Lillian Board, British athlete
* Malcolm Marshall, Legendary West Indian and Hampshire Cricketer [11]
* Achille-Claude Debussy, Famous French composer [12]
* Bobby Moore, 1966 England World cup winning captain (died at age 51; died 2 years after being diagnosed with colon cancer) [13]
* Babe Didrikson Zaharias, Legendary American athlete [14]
* Joel Siegel, movie critic and Host of Good Morning America (died at age 64; died 10 years after being diagnosed with colon cancer)
* Eric Turner, second player taken in the 1991 NFL Draft
* Walter Matthau, American actor, had metastatic colon cancer, but died of heart disease on July 1, 2000, aged 79
* Vince Lombardi, legendary coach of the Green Bay Packers, died of metastatic colon cancer
* Rod Roddy, previous announcer for The Price Is Right (died at age 66; died 2 years after being diagnosed with colon cancer)
* George David Low, American aerospace executive and a former NASA astronaut; died 2008
* Corazon Aquino, Former president of the Philippines. [15]
* Jack Lemmon, American actor, died of colon cancer (and bladder cancer) on 27 June 2001, aged 76.
* Sharon Osbourne, British reality TV star and talent show judge, diagnosed with colon cancer in July 2002, aged 49. She is now 55, and is believed to have recovered

Not That I Particularly Like Tony Snow, But ...

... I didn't want him to DIE. Some interesting, and scary as hell, parallels:

June 1, 1955 – July 12, 2008 (almost same age, him 53, me 54)

"In February 2005, while still at Fox News, Snow was diagnosed with colon cancer. He returned to broadcasting in April 2005 after having surgery.[9][10] On March 23, 2007, after almost a year as press secretary, Snow once again recused himself from work to seek treatment for recurrent cancer.[11][12][13][14] Treatment for the spreading cancer continued to force periodic absences from his duties in his final few months as press secretary, his subsequent position as a CNN commentator, and his public speaking engagements.[15][16] In the early morning of July 12, 2008, Snow died at Georgetown University Hospital as a result of colon cancer that had spread to his liver.[17] Reacting to Snow's death, former President George H. W. Bush lauded what he felt was Snow's ability to bring "a certain civility to this very contentious job."[7]"

He only lasted 3 1/2 years and he had resources.

"Man's loneliness is but his fear of life." - Eugene O'Neill

A Rat

Ugly little devil, huh?

What Does It Matter?

From last night on (in which I slept well, thank God) and into this morning I'm in "what does it matter" mode. Quitter mode. Fuck it mode. I might stay that way if left to my own devices, but there is another to worry about.

But, really, what does it matter? All my life my luck has been laughably bad. Am I going to be one of the 20% who is cured of this disease at Stage IV? No. Am I going to be one the LESS than 5% alive after 5 years? No. (I found one web site last night that listed it at 8% ... alas, again, no) I'm not going to receive a spot of good luck now from God or the gods or fate or whomever. I'm dead. Pure and simple. Dead. Why bother to quit chain smoking Kools? Which I'm doing as I type this ...

I'll tell you what's going to happen, but first a tiny bit of background. In 1998 I was in pitiful shape after my best friend died. I had crawled inside a whiskey bottle and lived there. I almost died before reason and the loved one convinced (begged) me to go to alcohol rehab. When I got there, the doctor told me my liver was many times its normal size, down almost to my right leg. He told me if I hadn't come into rehab I would have had about a week, maybe 2 weeks to live. I was yellow with jaundice. I was damn near a barely walking drunken corpse. But I lived. And I quit drinking alcohol. I had a colonoscopy that summer. Clean. It was the last one I had, obviously (demonic laughter). After rehab, I was moved to the hospital proper because I had a rare allergic reaction to the anti-depressant Remeron. It lowered my white cell count to almost zero and I was in danger of dying from any germ or infection I encountered, as my body could not fight off infection without those white cells. But the white cells in my blood gradually went up, and I survived that, too. Now:

This is what's going to happen: either the liver that should have gone 10 years ago or a disease -- possible pneumonia, something fatal like that, one a fully functioning immune system should have routinely fought off, is going to get me this time as they should have in 1998. This is the way my life works, I know, in negative, teasing, cruel patterns. There is a trickster, a prankster at work here, and it has a design, a plan. It does.

My colon cancer has metastasized. Imagine the cancer cells are thousands upon thousands of ravenous rats. They were living in the tube of my colon, but after they ate the good cells they literally ate through the wall of my colon, swam into the lymphatic system which, like blood and veins, travels through the entire body. They were trapped but now they have clear transport system throughout my body. These rats are out and swimming and looking for a new organ (or organs) to wreck, because that's what they do. This is what Stage IV is: the rats are out and invading new organs. The part of my colon that originally housed this tumor of rats is on the lower right side of my abdomen. The appendix they chewed to shreds and made me scream with pain is on the right side of my abdomen. The nearest major organ to these original gnawings and tearings is: the LIVER. Oh, they might swim awhile and attack the lungs or the bladder or the stomach or something else, maybe combinations (they do that, little bastards), but I'm betting they go after the LIVER, because that's what should have gone a decade ago from the whiskey diet. That was a very close call, and fate will be avenged. Or the devil or God or whomever. Humbert Humbert (nasty guy but "Lolita" is a great book) called "him" McFate. I like that. McFate.

Or:

Should I somehow make it another 5 weeks without the rats invading another organ(s), or even if they do, and I somehow, with no money, get into some pauper's treatment program and get the chemotherapy which is my only chance ... the treatment I will be receiving is a combination of 3 drugs, collectively referred to as FOLFOX in the oncologist community (everybody has a community these days, huh). Now, one of the nasty little side effects of FOLFOX is a lowering of one's white cell count so that one is dangerously open to infection of any kind. So maybe McFate will have his revenge with my immune system and get me that way.

Either way, though, I'm fucked. Let's face it. I'm a dead man. Not a bad guy, just a sort of zero. I had so much promise, but blew it all. Oh, well. What does it matter now? I will be a blip on an obit page and then forgotten. I know I'm not alone, not claiming to be. There are plenty of us Eleanor Rigbyish people out there. I don't want a funeral. I don't want the embarassment of nobody coming. Don't believe in them, anyway. Cremate me and bury the ashes in the old family plot. A nice, very polite, nonaggressive guy who didn't have the balls to achieve anything in life. We happen. I did one horribly bad thing in my entire life (and some would say even that wasn't so bad): I crushed on and harassed a girl during her senior season of high school. But I took that senior year away from her. I didn't mean to scare her but I did. I robbed her, and that's bad enough. I'm responsible. But I really never had the courage or even the most minor of killer instincts to succeed. I quit a lot of things. Yes, I have always been plagued by depressions, and I was agorophobic and panic attack ridden and a lot of other bad things and bad luck but I'm not using those as an excuse. I simply never had the balls to succeed. I was afraid so I almost always torpedoed myself. Now I'm dying. Big deal. What does it matter?

I'm tired now. Later.

Whimsy

• You were born on a Monday.
• Your star sign is Gemini.
• Your birthstone is Perl or Moonstone.
• The season was Spring.
• You were born in the Chinese year of the Horse.
• The US President was Dwight D. Eisenhower (Republican).
• The UK Prime Minister was Winston Churchill (Conservative).
• You are 54 years 2 months 14 days old.
• It is 290 days until your next birthday.
• In dog years you are 7 years old.
• You are 19,799 days old.
• You are approximately 475,179 hours old.
• You are approximately 1,710,644,610 seconds old.

Anger Room

I am really fucking ANGRY after hearing I have only a 20% chance of a cure, that I'm probably dying fast. I wish there were anger rooms where we could go and smash things until we're so tired we can't smash anymore. Get a golf club and just beat the shit out of lamps and furniture and walls and things. No punching bag will take care of this. I'm just mad, I don't know who at. God is so tempting to blame, but isn't he on every milk carton in Angryland?

I want to smash things. I want to destroy. I want to crush. I want to scream and cry and destroy. What do I do?

The Truth

http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Broccoli.asp?sitearea=ETO

Mommy, That Man Has Stage IV Colon Cancer

I have colon cancer. I found out Wednesday, August 6. I went to the emergency room with abdominal pains and came out of SURGERY with a scalpel wound from my chest down to my crotch along with, soon thereafter, the knowledge that a significant amount of my colon had been removed on the right side of my gut (Bingo! Malignant Tumor Exorcism Time!), as well as my appendix (which was attacked without provocation by said Malignant Tumor), and I was in nasty, nasty shape. Things didn't look good.

Today they look even worse. Three weeks after the surgery, today, I went to see the oncologist (translation: CANCER specialist) and he informed me that my cancer has spread beyond the wall of my colon, a veritable sea of lymph nodes and cancer cells had been released and the nasty little CANCER fuckers are swimming around looking for another organ to invade, via the vast lymph node superhighway. And they may get away with it! I joke, but I am pissed off and very afraid today. I have Stage IV (4) COLON CANCER. In cancer staging terminology, Stage IV is the FINAL STAGE. My oncologist said there is but a 20% chance of a cure. LESS than 5% of Stage IV colon cancer patients survive 5 years. So unless a miracle is out there, I'm pretty much dead meat walking.

I don't even know how I feel about this yet. Sad, yes. Afraid, yes. Angry, yes. But a lot more. I'll try to work it out. This is where I will work out. I don't want your pity or anything else from you, whoever you are. This is going to be my place to work out, to get things out, to deal, to cope, to bitch, whatever.

Oh, and I DO NOT have HEALTH INSURANCE, and I need chemotherapy, which is $3,000-$4,000 PER TREATMENT, and I need a treatment every 2 weeks beginning in late September or early October. I could hit a hundred grand real quick with all the other charges and doctors and nurses and clinics and medicines. I have pretty much exactly zilch. I don't know what I'm going to do, I honestly don't. Things look pretty damn bleak right now, and that's an understatement.

I am 54 years old, I like Led Zeppelin and movies, and I may not reach 55 next June. What a dictionary definition of "sobering".

I knew a man once who found out he had cancer, and he drove out into an idyllic cow pasture and swallowed a gun. I always admired the courage of that. The purity of it.

But I'm not going to do that. I'm going to try to live, because I've discovered (and it WAS a surprise; you'd have to know me) I WANT to live, as long as possible. Plus I need to live as long as possible for someone I love. So if I have to be declared "indigent" and beg and plead on my knees, I'm going to get that CHEMO and shoot for that 20%. By God I am!

But here, I work out. For me. As long as I can. But I'm fucking sick of the subject of CANCER for this day at least.

So that's the name of that tune. (Baretta; Killed his wife and got away with it.)

The Complete Carlin Said

"About time for me to get a little drink of water. Figure this stuff is safe to drink? (audience screams "no!") Actually, I don't care if it's safe or not. You know why? Because I'm an American and I expect a little cancer in my food and water. That's right. I'm a loyal American and I'm not happy unless I've let government and industry poison me a little bit every day. Let me have a few hundred thousand carcinogens here. (drinks, swallows) Aaaaah!

A little cancer never hurt anybody. Everybody needs a little cancer, I think. It's good for you! Keeps you on your toes! Besides, I ain't afraid of cancer. I had broccoli for lunch. Broccoli kills cancer! A lot of people don't know that, it's not out yet. It's true!. You find out you got some cancer ... Get yourself a fucking bowl of broccoli. That'll wipe it right out in a day or two. Cauliflower, too. Cauliflower kills the really big cancers, the ones you can see through clothing from across the street. Broccoli kills the little ones, the ones that are slowly eating you away from inside ... While your goddamn goofy, half-educated doctor keeps telling you, "you're doing fine, Jim". In fact, bring your doctor a bowl of broccoli. He's probably got cancer, too. Probably picked it up from you.
They don't know what they're doing ... It's all guesswork in a white coat.

Here, let me have a few more sips of industrial waste. (drinks, swallows) Maybe, maybe I can turn them cancers against one another. That's what you got hope for, you know, that you get more than one cancer so they eat each other up instead of you! In fact, the way I look at it, the more cancer you got, the healthier you are."

-- George Carlin,"Parental Advisory Explicit Lyrics"