Remembering Dave

Karen and I went to see my Radiation Onc. yesterday and he actually looked at the scan films and came in and told us that there are 2 spots, about the size of peas, which are located approx. 1/2 inch inside the brain. He is not sure what it is since I had the PCI and then also had the radiation to my tumor which was located in my right upper sinus. He said it could be something which developed from all the radiation I have had to the head, or..........it could be mets. ARGH!!!!!!!!!!! I have an appt with a Neurosurgeon on the 17th. He said they would probably do a needle biopsy too see if thry are cancerous and then decide weather or not to actually operate and get them out. If they operate it will probably be done by either Gamma Knife or Stereotactic Radiosurgury. Needless to say Karen and I are scared out of our minds. We need all the good positive thoughts and prayers you can offer. I have not come this far to be gotten by a few little peas in the brain. I will continue to fight, fight, fight. I have too much to live for. God Bless Us All. David C

It always feels better to have a good plan! thanks for the update God Bless, Karen C.

Lea, I remember you and wondered how your family was doing. Everything can turn out OK for your Dad, although it is perfectly natural to be scared. But you are having to grow up a bit faster than you should, and deal with adult issues sooner than you should have to. Someone posted a link to this cartoon, it is www.momscancer.com, it is a cartoon written by an adult about his mother's lung cancer, hers had spread to her brain, it takes a while to read the whole thing, but I will tell you it was a nice happy ending even though this family went through a whole lot to get there. maybe reading that will help you some. Please keep in touch and let us know how everything is going. Karen C.

You'll beat it. If you haven't read www.momscancer.com, which Hebbie posted a link to the other day, you really must. It takes a while to read but I think it will help you. But I know you'll get past this as well. you're a fighter. by the way, can I tell you how much I truly hate that darn toe nail fungus commercial? I wish the FCC would quit worrying about Janet Jackson and eliminate some of the more tasteless ones like that one. can't they promote their product a little less graphically? Hang in there, Karen C.

hunga munga...........munga

I just read it and I loved it. so full of hope, well, especially the end! I really liked this guy's approach to the whole ordeal. I emailed him and asked him to peek in on us. hopefully we will all behave if/when he does. thank you very much, Heather! Karen

p.s. and we got a little peek at healthcare in China, too. We had to take the babies to a clinic for checkups before they got their visas to enter the U.S. now, this was a clinic in a fairly modern/western city (Guangzhou) and a main part of this clinic's business was doing adoption checkups on babies, so they probably were about as top notch as they could be, but I felt like I was in an isolated country clinic circa 1940's America. Karen

Five months before Dave was diagnosed with lung cancer we got on a plane and flew for 18 hours to China. Before we left we purchased emergency health insurance which would have included transporting us back to the U.S. if one of us got sick/injured. We put alot of thought into that and believe me, we heard alot about it from others who have gone before us. I even packed some leftover needles and syringes from my infertility treatment because we have heard over and over how they reuse needles in China. Thank God we didn't need any of it, but Dave was so so sick as soon as we got back, and now we know WHY (SCLC). Suppose he got that sick while we were there? We would have needed all of our preplanned resources and more. Trust me, if you've been to Asia at all you can just imagine what it's like over there dealing with this huge disaster. Hong Kong (home of our beloved Berisa) and Japan probably have state of the art healthcare systems, but mainland China certainly does not and I'm guessing most of the rest of Asia doesn't, either. Trust me, we are so blessed here. Lucky. Our healthcare, while not perfect (but what is perfect?) is unbelievable compared to the rest of the world. Karen c.

Tons of fish! It's a fishing river! As a matter of fact, it's supposed to be one of the most pristine (clean) rivers on the east coast. So the fish are good for eating! Yeah, Dave has been really strong through all of this. Last week, about once a day, he'd say he didn't want to do the last chemo treatment, and I said, hey, you are NOT a quitter! You've never been a quitter! You can do it! Not sure it makes a difference, but who knows? And I admire YOU for going to the end, Cindi - you rock! Karen

Fay is the strongest person I have ever known. Karen

Hey, this is Karen. Dave had his very last chemo treatment yesterday (knock on wood). While there the doc said he'd see him to go over recent scan results, etc., so Dave called and I ran out there, actually got to sit and watch the last little bit of poison drip through his veins, ugh. anyway, the Onc. said he's not so sure the tumor is completely gone, he thinks there is still one little tiny bit of tumor left and wants us to look into gamma knife to zap that last little bit. he also said it COULD be a piece of scar tissue, but he doesn't want to assume that it is. So Friday we go to see the radiation oncologist about it, he won't do it himself, but some of his colleagues at Massey Cancer Center here in Richmond would. Dave is really beat up by all this treatment. He's just gone through six whole months of chemo and radiation, pericardial fluid surgery, etc. etc. He still has the brain swelling which is probably caused by the radiation but also might be some caused by the little bit of tumor pushing into his brain. He said his entire body hurts BAD and his head hurts REALLY bad. He decided to go on and take the decadron for the brain swelling despite the fact he goes totally psycho on it. We will just both have to be aware of his psycho episodes and deal with them accordingly. Frankly, I am ready for him to take it, he can't be much worse than he is now. Anyway, I was just reading Karen's post about why people don't post much. I do go in waves. Some of it is practical. I was REALLY sick and out of work from Dec. 22 until yesterday, and our computer at home is messed up and doesn't allow us to stayed logged into the internet very long at a time, so I just haven't had the chance to go online much lately. Plus, the laptop is plugged into the wall next to Dave's recliner, and he is in the recliner just about constantly, usually with laptop in lap and Tivo remote in hand. so I don't get much chance to watch my own programs or get on the internet, which is OK. These are the only two things Dave is able to do. I notice there's been some more conflict on the board, looks like some more bullying has been going on. I hate to see this and worry about Dr. Joe, I have worried before that he was so devoted to us he might get burned out. He is so compassionate and honest, so I hope we see him again. Well, gotta get to work I suppose, just wanted to give yet another Chapman Acres update. Oh, if anyone would like to buy a nice riverfront cottage in Central Virginia, we've got one for sale! God Bless, Karen C.

Hey, ya'll, we're doing OK. Faith hasn't driven her car yet, a little apprehensive, but her 8 year old cousin Kate drove it with Faith as a passenger on Sunday and I know we took some photos but I can't find them at the moment on our hard drive, Dave may not have downloaded them from the camera yet. He had his second treatment of this last round of treatment Monday. He is really beaten up by this. I think it's amazing he's made it through the whole six months of torture. I'm staying at home and trying to rest but as in this morning, got up, took care of Faith and then drove her the 20 miles to daycare. sure wish we lived back in town already! took dave in for an echocardiogram this afternoon, the hospital is right around the corner from daycare - if we can find a house in that immediate area life will be so so simple! I had a ct scan of my sinuses yesterday, need to call the doc tomorrow, I have a strong feeling I will need some sinus surgery. I had, I am sure, am abcess in my sinus cavity last week. the pain was almost unbearable. I took three advil and three tylenol every three hours, around the clock, for days. the doc finally called me in a new antibiotic, avelox I think, and it did kill the infection, but that side of my face still feels weird. so we are a rather pitiful bunch and trying not to get on each other's nerves too much. hope the house sells fast. no one has made an appt. to see it but we've had a few strange cars pull into our driveway then back up and leave which is kind of amusing. our house is not exactly on the beaten path. well, hanging in there, will post a photo of Faith soon in her new wheels. Karen

Shelli, I think it's just awesome about your sister becoming engaged in the middle of treatment. he must be an awesome guy and I bet your sis is an awesome gal. It does give you perspective to see others suffering. Losing a child is a horrible thing. Please keep us posted on your tests and your sister's progress, and of course how the house is coming along! God Bless, Karen

Joyce, my goodness you two win the Best Attitude Award! My goodness, talk about looking at the bright side! (oops, bad joke). I hope these laser surgeries do the trick and I am jealous of the walk together, Dave is not up to many walks these days, but I am glad we can sit and watch Law and Order reruns together! God Bless, Karen C.

Rochelle and Jillian, Faith wants a white car like mommy's that she can drive. mommy's car is actually silver, but to her it is white. sooo, if she remains a good girl today, she will be getting a white car to drive. I bought her, used from someone at work, one of those white barbie jeeps that runs off the 12V battery that they sit in and drive just like a real car. her favorite pretend time play is to drive. she even pretend buckles her seat belt, says green light, go! red light, stop! Santa tried to get her to tell him other things she wanted, and she steadfastly said, just a white car like mommy's! Karen

Hello everyone. I just got an email fom Mr. Justakid saying that Beth is in the hospital. He said that............ Beth went to doctor today for a cough and elevated heart rate. Her GP admitted her to Heroic Doctor's Parham. They are going to do a CAT scan with dye checking for pulmonary embolisms. If they don't find anything they will send her home tomorrow. If something does show up she could be in for 3 or 4 days. ................ I am going to try and call her tonight but wanted everyone to know so you can send your good thoughts and prayers her way. David C

Peggy, I think that's incredible news and I think you do Stand 4 Hope and I think good news brings hope to us all! Karen

For both Karen and myself. I started my last round of chemo yesterday (Cisplatin and CPT-11) and it hit me so hard I almost could not get myself home. I came home and slept all day, all night and a good portion of today. This is the worst I have ever felt from any of my chemo's. The next two (also the last 2) Mondays of chemo should be better since I only get the CPT-11. I just have to get through the next few days and I should be fine. Now for Karen. She has been fighting a Sinus infetion for the past few weeks now and just can't get rid of it. She has been to the Doc before and they gave her antibiotics which did not even touch the infection. She got up this morning and had a great amount of pain in he sinus, mouth and gums. She luckily got an appt. with our Family Doctor this morninh who told her that she was so won down that nothing would help get better unless she stopped a took a rest. The Doc. told Karen she WAS GOING to take the next three weeks off from work. She came home and has been in bed since around noon. Please send us both, but especially Karen, many good prayers. As always my prayers are with each and every one of you. David C

Curtis, I'm a little slow here, actually, I've been SICK for the last couple of weeks, so haven't been on the board much at all, and just saw this. I hope you don't mind, but I forwarded it to my dear Aunt Mary, who has lost two adult children in the last four years. She lost her 38 year old daughter, married and the mother of three children around your Katie's age, to breast cancer, then 18 months later her son committed suicide. For some reason I think your thoughts and words will help her. Her husband of 50 years (51 years Feb. 6) had triple bypass surgery last week, it was rather sudden and unexpected, but she is bravely keeping on. God Bless, Karen C. oh,by the way, I'm really touched by your words. What a wonderful tribute to Becky. And mostly the words of your beautiful daughter.

Angie, I feel your pain with two men on steroids. if I had two Daves on steroids it would be very ugly. Does your uncle have family to help with getting him back and forth to treatments? You are going to kill yourself with all of this. Yes, with SCLC they usually can't waste a minute getting chemo in, it grows so fast. I remember in 2003, I took Dave to the ER on a Saturday night. He had his biopsy on Tuesday to confirm the cancer, and on Thursday he has his first chemo. He got out of the hospital on Saturday and on Monday we were at the radiation oncologist's office to get his chest mapped for the treatment. Keep us posted, and please please take care of yourself, easier said than done, I got tired of hearing that myself, but let me tell you, it's not hard to run yourself into the ground and then you're of no use to anyone! Karen

I just saw this. I agree. Go Bo. Dave is the most in control person I've ever seen and it seems to work for him. His physicians are all VERY competent and don't seem to make mistakes, but Dave - and I - stay right on top of every detail. In fact, his radiation oncologist just couldn't believe Dave's bonkitis last summer was a met. We didn't need to press him much to get sent to an ENT doc for a biopsy, but he balked just a little. We were right and he was wrong, and he apologize profusely just for guessing wrong. It was OK, we made sure it got checked out and I think if we hadn't he would have. But it just shows you, even the most competent experienced docs at the best cancer facilities in the country need YOU to be their quality control. Very good point, Bo. Karen

Angie, what about doing gamma knife or RFA to the brain met? do you know if that's been discussed or is a possibility? I just don't want to think that this is a death sentence. Dave has extensive SCLC and even though he's met is in his skull, not his brain, looks like he's licked it. Regardless, prayers for your family. Just when I thought I had been under the most stress, I think you got me beat. Hang in there, sweetie. God Bless, Karen C.

ok, shamelessly bumpg it up to the top!

OK, ya'll, the only purpose of this post is for everyone to see our happy little girl with Santa Claus! Ho Ho Ho! Everything is Ho Ho Ho Tacky lit houses are Ho Ho Houses Faith's dress is a Ho Ho Dress And Watching any Christmas show, especially Rudolph, is a Ho Ho Show. Having a three year old around can even make Dave forget lung cancer for a few minutes! Merry Christmas to all and to all a Good Night (and a good day, and prayers for a cancer free year in 2005 to everyone!) Karen C.

My Onc did not want to do PET scans on me either. I bugged him and bugged him until he finally started giving them to me. My understanding is that they can give false positives and false negatives so Oncs don't like to use them. Maybe you should ask this question to the "Experts" here on this site. As far as #'s go, I was a little obsessed when I was first diagnosed until my sister sent me an article which I will copy below. It is kind of lengthy and I had to read it a few times before I fully understood its message but basically it that as far as you are concerned, the #'s don't mean a hill of beans. I personally feel it is not good to know the exact #'s. You read and make up your own mind. Here is the article. I was NED and now supposedly I am NED again (still waiting on results from MRI taken this past Friday) I found it difficult to live with NED due to the #’s I had read about. It took me a couple of months to feel anywhere close to “normal” after my PCI. Hang in there bud, we are all here for each other. David C....................................................................... The Median Isn't the Message Prefatory Note by Steve Dunn Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo's Smile, The Mismeasure of Man, Wonderful Life, and Full House. As far as I'm concerned, Gould's The Median Isn't the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, "the statistics don't matter," and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn't the Message is reproduced here by permission of the author. -------------------------------------------------------------------------------- The Median Isn't the Message by Stephen Jay Gould My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics. Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median). The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death." This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality. In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading. Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness. If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner. Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb. The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much. I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history. We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation. But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation. When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair. Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve. The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight. One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age. It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light. The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated. -------------------------------------------------------------------------------- Postscript By Steve Dunn Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn't mesothelioma, but a second and unrelated cancer. In March 2002, Dr. Gould published his 1342 page "Magnum Opus", The Structure of Evolutionary Theory. It is fitting that Gould, one of the world's most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman - but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn't The Message .