Sen Inhofe Denounces Alarmism

The Huff has a discussion of Sen. James Inhofe's passionate campaign to protect us from the Global Warming myth.

Xeloda and Tenacity

I am reposting this message for Xeloda users which I first posted 15 months ago. I just traveled to visit my friend yesterday and earlier today. She has been up and down over these 15 months, but mostly up. She has continued to take Xeloda off and on and has made a point of enjoying life. She has also held down a job until just 3 weeks ago, helped to take care of her elderly mother, and lived to celebrate her own 60th birthday. Since her birthday she has developed severe edema. Her doctor has managed to get it under control using albumin, which has been another story in her well-storied life. When I saw her yesterday she had lost forty pounds of water weight in two weeks and she was "holding court" with an audience of family and friends. Once again, each day is a gift. After being unable to take it for a while, she has recommenced her Xeloda regimin as of today.

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Posted 6/28/2005
My family and I spent a few days with my friend who has breast cancer. She is not doing too well now, but she has been up and down for many years, fifteen years I think. I know it sounds strange, but I am somewhat envious of her. She loves life and gets excitement and enjoyment out of every bit of it. It's not that she has changed because of the cancer. She has always loved life, and she's been doing her best to hold onto it. Sometimes she gets her dark moods, but never weak moods.

I think she's been to every doctor in the Western Hemisphere and a few in the Eastern. She is constantly doing research and making lists of questions. Sometimes she tells the doctors things they didn't know.

Her pet peeve is the ignorance doctors seem to have regarding the daily struggles that patients face. She has, according to her own story, and I believe it, lasted longer on Xeloda, a particular chemotherapy, than anyone else. The side effects are nasty and she has learned to manage them. Since, she feels, the doctors are not doing a good job of helping patients with these problems, she would like to share her insights. She has written a document that she has been xeroxing and handing out to likely candidates, or leaving in doctor's offices, and mailing to any who ask.

It has become more difficult for her to keep up with this process, and she is currently on a triple cocktail of new chemo drugs, so I offered to post it on my blog for her. I will post it below until I find a better home for it. I will be glad to forward messages and or questions if I find them appropriate.

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Posted Document by M.:

As a breast cancer patient who has survived nearly 8 years of chemotherapy since the metastatic spread of my disease, I have a complaint to make about cancer treatment: often patients are not adequately informed about the process of taking a specific drug. Doctors (or their physician assistants) in some instances for certain drugs need to be very detailed and almost create a recipe for successful taking of the drug. While sitting in waiting rooms, I have chatted with people in all phases of treatment. Many complain and insist "I can not take this drug. . . the side effects are too bad". We humans are all different and our bodies certainly respond differently to drugs, but I would think a few guidelines are needed. The purpose of this paper is to provide step-by-step instructions for the successful administration of the drug Xeloda or Capecitabine.

The cancer patient unfamiliar with Xeloda might imagine that taking chemotherapy by pill would be considerably more convenient than taking weekly injections . There would be need for one less needle puncture! However,the initial adjustment to the drug Xeloda is not like swallowing an aspirin and letting it do its thing.
As with many of the chemo drugs, establishing the effective and tolerable dose for a specific patient is not an exact equation and sometimes various dosages must be tried. Doctors establish an initial dosage by using your body weight. Often this initial dosage must be adjusted. Do not give up if your first dosage sends your body into physical despair. My body actually developed Parkinsons-like symptoms when I took the initial dose. I mean by this that all my muscles got very weak…most especially and noticeably my tongue—I could not speak, I could not swallow so I dribbled, my eyes teared and could hardly be made to focus. I scribbled in nigh illegible handwriting "I think I have had a stroke." Even though my mind was functioning and I knew everything that was happening, I felt like a viewer of my own strange condition. My family checked me into the emergency room expecting them to arrest my stroke. In short order, the ER folks assured me that this was not the case. I lay on their gurney for 5 hours being monitored and then they sent me home. The ER doctor said" Do not take any more of that drug until you speak to your medical oncologist who prescribed it." When I visited my regular oncologist his first response was "Discontinue the drug." I insisted that I did not want to give up taking this drug. I knew that it might be my last possibility for survival. Finally he said "Okay, one more attempt. Reduce the dosage by half and then work your dosage back up." At 1300 mg., the same horrible set of symptoms returned. I reduced the dose back one small 150 mg pill to 1100 and that is the dosage I took for two years. Very few people get this side effect—only 2%.

I knew that with my advancing breast cancer I had to be able to take this drug. I was not only tremendously determined, but also afraid of this drug that had the potential to extend my life. I experimented with methods and times to take it. The brochure that my doctor gave me informed me that this medication should always be taken with food twice a day. Even a simple stipulation like this required more attention than I initially imagined.

For example, when I first began the medication I was taking it twice a day with several swallows of food. One vomitous experience made me want to discontinue this drug. I had to try again. From then on I took the medicine with a pretty substantial meal. No more few swallows of whatever. I had a meal. Two staples that I included in my diet were cheese and kefir. The latter is a yogurty-like beverage that is high in protein. Our bodies need much protein to rebuild cells that the chemo destroys. Cheese helps me to avoid chemo-induced diarrhea.
Eating was one thing, drinking was another. Xeloda is a heavy duty medicine and I figured it had to be hard on the kidneys. I always chased my pills with two 8 ounce glasses of plain water.

I forced water the rest of the day. I got myself a big water bottle and it became my constant companion. Obviously, this necessitates frequent urination and that takes some planning. Coffee and soda and most juices were eliminated from my fluid diet.

The timing for administering the drug was also crucial. If I took Xeloda with a late breakfast and an early supper, an 8-10 hour spread , I was in trouble. Too little space between doses and I was overdosing and feeling as though my stomach could not hold itself together. I rearranged my schedule. A twelve hour spread was the allotment which allowed me to feel the best. I took my pills at breakfast at 6:30am and again at supper at 6:30pm. I carried spare pills and food and water with me. If it was 6:30 and I was on the subway, I whipped out my apple and cheese or banana and nuts. You must carry enough to cover for unscheduled interruptions in your meal plan. This medicine worked for me if I worked it that way.

Xeloda causes a very aggravating side effect called " hand-and-foot syndrome" (technically known as Palmar-Plantar Erythrodysesthesia).
My doctor described it as "inflamed capillaries." No one in the medical establishment seems to know how to prevent this burning hand and foot condition. I found an article written by a nurse. I raced through it looking for specific instructions about how to eliminate or reduce this symptom. To my dismay there were none. I called her on the phone and asked "Well what can we do?" "Nothing" she responds "Just stay off your feet and don’t use your hands." Great! What a life I thought. My extremities felt hot and burning. I told my doctor maybe if I put them on ice that would cool them off. "No, no" he emphatically proclaimed, "that will make it worse. Use Bag Balm cream like farmers use on the udders of cows. " That was too greasy and it did not take away the burn. Big half dollar sized pieces of skin would peel off my feet if I used nothing. I asked my doctor again. He went to a dermatologist and came back with a prescription for LAC-lotion (ammonium lactate). I now smear this magic lotion on my hands and feet 5-6 times a day. It absorbs very thoroughly and fast. I usually wear white socks under colored ones. The dyes on colored socks , I figured, could cause trouble in the open cracks in my skin . Removing socks and juicing up makes life effortful and somewhat ridiculous, but you must do it if you want to take this medicine. LAC-lotion only prevents the pain caused by shrinking skin. It does not take away the burn. Its use allows the skin to retain its elasticity and not peel off. This prevents the danger of infection. It also feels much better if it is flexible skin rather than a tight shrinking glove. I walk on my feet a reasonable amount in an effort to prevent the body from losing all its muscle tone. In a museum, I try to use common sense and have occasionally allowed myself to be driven around on a wheelchair.

I continue to do things with my hands. Certain tasks require special precautions. For example, I wear cement layer’s gloves purchased at the hardware store when I scrub the floor. I have another pair to do dishes. In the garden I use a heavy pair of mud gloves. I try never to get in prickly plants that could plant a thorn in me.

B-6 is a vitamin to remember if you take Xeloda. Xeloda seriously depletes your body of this vitamin. I have bottles of vitamin B-6 stashed in the car, in the upstairs bathroom, at the dinner table and in my purse. I buy 50 mg tablets, bite them in half and swallow a lot of water. I do this 4-5 times a day. If I don’t, my energy slips away and my thinking gets foggy. The hand-foot syndrome worsens without it also.

The protocol for Xeloda requires taking the pills twice a day for 2 weeks and taking none for one week. Then you start back up again. This is a serious chemotherapy drug and, like all, you must be vigilant. Many patients can not make it through the whole two week period. That is no reason to despair. If you are only able to manage 9 days, stop. The pain in the stomach (probably from too little food) is the major reason to stop. Doctors are, I think, too quick to permit you to stop if your feet look red. As long as they are not cracking open (because you are using your cream) try to ignore the pain. Do not , as so many I have known , dwell on this condition. Remember: your very life may depend on your being able to take this medicine.

After taking Xeloda for 4 or 5 rounds, you may discover that the hand-foot-syndrome may actually worsen during the weeks off the drug. My stomach seems to knot up the first day off the drug, too. I have grown accustomed to that feeling now and have learned to say "Oh, yeah today is the first day off the Xeloda."

One of the most irksome attributes of Xeloda therapy, is the bottomless sense of tired that results from the least exertion. Walking seems to use up your total energy. It almost makes you breathless—especially the two weeks when you are actually consuming the pills. Ask a friend to help you get a disability parking sticker. Go to the customer service center at the front of your grocery store and request that they send someone to the back of the store for that item you want.

You must modify your style if you are taking Xeloda.
Many of us race around in the morning trying to get out the door to work. Well, that racing is impossible on Xeloda. You must plan ahead. Arrange your clothes and prepare your lunch the nite before. Ask your spouse or friend to gas up your car. Allow others to do for you. Friends and family want to feel useful instead of helpless.

Sometimes you have to give up activities. For example, I regrettably gave up making porcelain pottery on the potter’s wheel. My hands were prone to cracking now and I figured it would be asking for trouble if I left bacteria from the clay seep into my hands. I took up beading instead. When I had not only physical energy but also creative energy, I assembled necklaces and bracelets as thank you presents for my helpful friends.
Just like selecting the battles we want to fight in life, the Xeloda patient must select his/her activities and energy-expending actions carefully. Some people absolutely must have a perfect physical environment. Objects and newspapers must be in their assigned locations. Okay you can give up your gardening time and keep the house perfect. If gardening feeds your soul and tidying doesn’t you may choose to sacrifice tidying and/or reduce your standards. You may have to choose between washing the windows or spending those sacred two hours with a gang of friends sharing a movie and conversation. A cancer diagnosis makes one cherish every moment. Xeloda forces one to seriously evaluate his/her use of time and energy.

One must carefully gauge one’s need for rest when on Xeloda. I have an inflatable mattress at work. I change my plans according to how tired I am. I gave away my precious ticket to the Neil Diamond concert. I knew it would take more energy than I had that day. Furthermore, my white blood cell count was low and I did not want exposure to all those germs from the university students who had just returned from venues all over this germ filled world. I started to go to less congested and free student concerts –when my energy was up.

Capecitabine, the scientific name for Xeloda, works havoc on rapidly reproducing membranes. For my dried out nose I buy cheap saline nasal spray. For my cracking lips I resort to lip moisturizing therapy. Because of lack of energy I confess I do not brush my teeth as often as I once did. I do try to keep my mouth clean by swishing water from one cheek to the other when I can’t brush. Mouth sores are a very common chemotherapy problem. Do not let them get to be problematic. Be vigilant and tell your doctor’s office as soon as you sense one coming.

Everybody’s body chemistry is different, so one never knows exactly what to expect. Some of us are allergic to dog hair and some to cat hair. I have included here the lessons that I have learned from my body over the 2-3 years I have been taking Xeloda. My hope is that some of my tips will help you. If not, be inventive

The Ick Factor

Many people have feelings toward objects. When I see beer cans, crack vials and used condoms in a playground, as has happened, I have a strong visceral response. It lowers my opinion of the neighborhood to say the least. This reaction, I don't think is unreasonable. It is relying on objects as the traces of likely events, sort of a poor man's CSI. Broken glass is an indicator that you should park your car somewhere else.

When I see a collection of old weapons, or Nazi paraphenalia, it doesn't disturb me. Some of it might interest me, but certain other folks might find it frightening. They won't want to touch it. I wonder, what does it represent to them? Do they consciously believe that the presense of such historical material indicates the imminence of danger? Are flags of the CSA indicators that whips and bloodhounds are close by? I have already mentioned my reaction to a modern, automatic weapon that my friend showed to me. Was my revulsion rational?

Looking at the positive side, I remember that my brother had a favorite Teddy bear when he was a toddler. I don't think I did, although I was quite fond of him. I also remember being surprised once when he tripped over a stone ... and then came back and kicked the stone as if to exact some sort of revenge! Which of us is normal? My children show the same differences.

Professor Bruce Hood has been poking at the boundaries of superstition. He thinks that there are very few rationalists in this world. To prove it he offers to his students a chance to wear a sweater, washed and folded, formerly worn by someone else. He'll even give them 10 quid to do it. There are lots of volunteers until he tells them who the former owner was. For me, it made no difference, but then again I didn't know the name. I probably wouldn't wear the shirt at that price because I'd consider it beneath my dignity [ed: cantankerousness maybe], but I would have nothing against it in principle. I've been trying to think what criminal, or other person, might make me reluctant to wear a thoroughly laundered garment.

9/22/2006 5:25 PM

George Will Likes W**-Mart

OK, I admit it. I have hated Wal-Mart for years. I shop there from time to time when it's convenient, but only because the relevant retail stores in my own neighborhood have gone out of business. However, I am conceding here that George Will is a pretty persuasive guy. His paean to the Big W is annoying because it is mostly correct. I was also impressed, as I noted in an earlier post, with Wal-Mart's massive philanthropic efforts to assist people after Katrina and with Wal-Mart's recent green initiatives.

George Will has pointed out that the store creates 100 new, more productive, jobs for every 50 jobs that it erases among the competition. I am certainly in favor of this. Unions are against it, but I am ambivalent about unions as they exist today. I believe that the small and repeated sacrifices that we make in the US, as an economic entity, are our insurance against obsolescence. It might not seem like a small sacrifice to the person who gets laid off, but it would be a lot worse if we delayed such dislocations until a crisis took place. Just look at the old Soviet Union.

Having second thoughts is a good thing, yes? Nevertheless, in the final analysis, I still have big problems with Wal-Mart for two overriding reasons. First, Wal-Mart is too big. It creates havoc regionally, sucking the local money out of every small shop and drug store and bakery and deli and corner grocery for miles around. The jobs it creates are cookie cutter, assembly-like jobs. The dislocation caused destroys local culture, and the jobs it replaces are those of middle-class, neighborhood-oriented people who, in turn, would spend their money locally. I'm sure George Will used reliable calculations, but I'm not sure he accounted for the cultural multiplier of having local people with honored positions.

The competition that Wal-Mart faces, aside from the fast-fading local businesses, is what? Target and Home Depot, maybe? As long as these remain viable I suppose Wal-Mart won't become a monopoly. That's some comfort, I suppose. However, I don't really trust a Republican administration to watch for the price-fixing shenanigans that will begin to occur when economic power becomes too concentrated.

The second objection that remains is that Wal-Mart is unnatural. Plainly it depends on the suburban automobile culture. The physical footprint is huge and environmentally disastrous, but the bigger problem is that the dependence on cheap oil makes us much more vulnerable to oil shocks. Congested traffic and global warming are part of the externalities generated. Wal-Mart also gains its productivity by putting all its customers to work. What work is that? -- The untold hours spent behind the wheel.

I am in favor of any tax structure that puts a penalty on unsustainable trends, particularly unnecessary transportation. I don't think we should ban such things, but I do think we should have a forward-looking national policy that discourages sprawl, dependence on individual travel and the use of fossil fuels. The amount of discouragement should be determined with an eye toward facilitating the development of sensible economic alternatives. If we had a high fuel tax and Wal-Mart were still able to prosper, then I would be willing to agree that its productivity advantages were real.

Thanks to Jane Galt for the George Will reference. I'm sorry that I must continue to disagree with such a distinguished triumvirate.

9/18/2006 6:07 PM

Ed Koch Says Stay the Course

I'm glad I'm not the only Democrat remaining who thinks that the war in Iraq is necessary, and that the wavering will of the US is dangerous for many reasons.

Ed Koch, who is the wise and witty former mayor of New York City, has always been on my most-admired list. I wish he were president. His comments on RealClearPolitics have provided a little respite from that feeling of doom you get when you realize that your team is wavering. He is asking Democrats to put the nation before the Party.

… [S]eeking as some do to make our involvement in Iraq a partisan issue and characterizing the President's efforts to protect the homeland from terrorists in an adversarial manner is endangering the country at a moment in time when we are facing an existential threat to our very survival as a nation.

Of course, the President, Vice President and Secretaries of Defense and State have made monumental mistakes in the conduct of the wars in Afghanistan and Iraq. Great mistakes in handling the war against terror were also committed by prior administrations. Now is the time for everyone to acknowledge the enormity of the danger we face and for reasonable people in both parties to join together to formulate a unified approach …

What a concept. Band together and give the Administration room to govern. He's a little old, I guess. He got his political education before Tom Delay and the advent of Fight Club politics. It seems to me that the terrorists would know what to do with people like him. RINOs and DINOs would be tortured and beheaded, while the rest would just lose their heads.

When Koch was just a Democrat, the Left thought he was a pretty smart guy. People should be wondering why a smart guy sees this as an "existential threat".

9/18/2006 12:03 AM

The Unmistakable Stench

I was watching a discussion on PBS of the religious interpretation of 9/11. How did your view of God change after the event? was one question the various speakers addressed. Another was about the "face of evil", challenging the speakers to express their reaction in terms of this unseeable force that seems to love suffering. This was where I had to stop watching. It’s not that it disgusts or frightens me, though it does. It’s just that I feel its existence so thoroughly that I cannot tolerate the viewpoints of the rationalists. I am a thoroughgoing rationalist myself, or try to be, so such obtuseness in my fellows embarrassed me. This painful internal conflict drove me to respond, and a flash of inspiration gave me the words, I think, to explain to them how to sense what I’m sensing. …

Memes, ancient creatures that they are, come in strains with intensively selected, highly structured characteristics. Some important attributes are 1) fecundity, 2) cost/gain patterns, 3) intensification trends. The first is capacity for replication, ease or likelihood of being copied. The second represents what a meme does for you, your family, society and third parties. The third attribute refers to the field preparation induced by an established meme. What other memes does it make room for?

Evil, easily recognized by most people whose IQs have not exceeded the maximum for usefulness, is a meme series that leads to an intensifying series or cascade of domino-memes where successive generations increase the ratio of damage done to out-group vs. in-group parties. Can you parse what I’m saying here? Any fool knows that choices lead to other choices, and some choices lead to progressively more damaging results. Any fool knows that bad company rubs off, as do bad thoughts.

Think about the Plague. The symptoms are predictable, distinctive and progressive. There are somewhat different results depending on the individual. There are different outcomes depending on the medical support system, but it is still an evil thing. We know that Science can unravel its mysteries, help control its propagation, but Science cannot change the emotional reaction we have when we hear the word nor change its very nature.

Evil can be seen as a destructive meme-contagion. It’s not as easy to discover the progression of symptoms. It’s not as predictable or as visible, but it is, nevertheless discoverable, identifiable, subject to analysis, and ultimately seeable.

Maybe some folks are just born evil -- we’ve heard people say that. I would suggest that such hosts are merely more susceptible, that perhaps an unfortunate early exposure combined with a peculiar pattern of neurotransmitters led them into a negative cascade, culminating with an implacable and destructive attitude. Or maybe the absence of eumemes leads to the same result.

Whatever. I’m not taking credit for any particular sensitivity to this affliction, but some of us can recognize it for what it is. Some of us can also detect many cases with our olifactory system, as Hamlet implied of Denmark.

9/12/2006 12:25 AM

New Oil

Frank Warner has a post on the new Chevron discovery under the Gulf of Mexico. He is generally pleased about it, and so am I. Oil availability is a good thing for us considering our present precarious position. If we use it as a funding source and an insurance policy while transitioning briskly to a less destructive energy paradigm, then it will have been a godsend. Unfortunately, as you might guess, it may end up just enabling our oil addiction. Anyway, here's what I had to say:

Free markets are wonderful at increasing supply when the price is right. People often underestimate that power. All of a sudden we're getting huge "new" deposits, such as the Athabasca oil sands, which just wouldn't exist at $10. If the price went high enough, people would find a way to make oil from banana peels and parking tickets.

The thing that markets won't do for you is control externalities, byproducts that no one pays for. Since CO2 is one of those, it's important to ascertain the long-term cost (or conceivably benefit) of that byproduct to society and impose said cost on the producers. (We can keep the benefit.) If we impose that cost reliably, producers will invent a way to handle it, which could work out well for everyone.

Personally, I would prefer that we have a coherent energy policy that would lead to a sustainable future. The way to do that is to simply overtax less desirable energy sources in order to advantage more desirable ones. IMO, the biggest untapped energy supply in our present economy is conservation. The most important transition source is nuclear energy, which should be subsidized, and the most important ultimate source is energy from nuclear fusion. Alternative energy can play a supporting role.

I'm glad we have new oil from an American source. It will help with the political issues, but in the long run, cheap oil is harmful to sensible planning.

Posted by: jj mollo | September 07, 2006 at 11:23 AM

Loading the externalities onto oil prices is a good idea. Unfortunately, one easy way for the providers to avoid such costs might, I'm hypothetical here, be to preferentially release methane rather than CO2. Another way might be to sequester CO2 in such a way that it isn't released until later, creating a problem for the future, but providing a net present benefit to the producer. Undsoweiter. When you squeeze the tube hard enough, toothpaste will come out of all the holes.

All these things would be secondary externalities related to the tax structure. The complexity becomes such that you have to tax the net-present-greenhouse-impact, which would be hard to do. Since you can't practically impose the greenhouse cost on the producers -- they will find a way around it -- the government needs to establish a comprehensive energy policy that will direct economic activities toward a reasonable future. You may have noticed that there is some argument over what that reasonable future might entail. It would be nice if annual increases in fossil fuel consumption, as presently projected, were part of a reasonable future scenario, but it is not so, at least not without some major technical innovations.

Free markets will, in all probability, lead us into a workable future, but the consequent dislocations could be painful. The US population could drop dramatically, as it did in Russia during the transition from Communism. Transitions can be tough. It's best to plan for such a transition ahead of time, which brings us to another failing in free market systems. Money moves toward the best strategy based on net present value. The market is unconcerned about an uncertain future collapse that must be coming, as long as it can make money before that collapse. Development was taking place in New Orleans right up until the evacuation.

Only insurance companies bother themselves about such stuff. And insurance companies look out for number one. Please note that insurance companies have not taken it upon themselves to rebuild New Orleans. If we expect them to dig us out after some world-wide ecological catastrophe, we are seriously deluded. OK, OK, I know. We are seriously deluded anyway.

9/7/2006 11:49 AM