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.