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.  :(