Cancer Blog

Friday, January 30, 2004

scans: better than expected

I picked up last week's CT scan films and report from Barnes-Jewish Hospital here in St. Louis. The interpretation of this report is not as clear to me as the others had been since the previous scans from December 5 were done at Vanderbilt. The Barnes-Jewish radiologists compared the new scans to the last ones they had, which were from almost a year ago. But I was able to match things more or less to the results from last month's post here on this blog. Overall, they were better than expected. Given the growth in my neck tumor and the recent abdominal pain (which has subsided since last week's chemo), I was prepared for the worst. Happily, the news is more favorable.

Still no action in the chest, so let's proceed to the abdomen. Lots of crap in the liver--as has been the case for ten months now--and the largest lesion is reported as 2.5 x 2.0 cm, an increase from 2.1 x 1.7 cm on December 5. There is also another, similar-sized lesion mentioned: 2.7 x 1.7. The Dec. 5 report only mentioned the largest, so I'm not sure what to make of this. It is likely that the second tumor has increased--perhaps dramatically--in the last six weeks, but I can't be sure. Next, the tumor in the colon. This had been the largest, and last time measured in at 5.8 x 3.6 cm. Well, according to this report, it now measures 3.8 x 3.3 cm. Quite a significant decrease, and very good news. However, the report also mentions an adjacent tumor--not mentioned in the Dec. 5 report--measuring 0.6 cm in diameter. It's possible that the Vanderbilt radiologist counted these two tumors as one, which would put the two together at roughly 4.4 x 3.3 cm. We still have a significant decrease. Unambiguous goodness. There's a tumor in my lower back that has changed from 2.6 x 1.5 to 2.4 x 1.7 cm; fine. Then there's the relatively new tumor in my right groin which has changed from 2.4 x 2.1 to 2.6 x 1.9 cm; fine. And then there's the old tumor next to my spine. This has increased from 2.8 x 1.9 to 3.2 x 2.1; bad. That's about it. No new tumors in the chest, abdomen, or pelvis (excepting the ambiguous action in the liver), but I should mention... Incredibly, there is a new tumor in my neck. I noticed it a few weeks ago. It's a pea-sized lump on the left side of my neck; this is opposite from the soon-to-be-ablated monster on the right side (roughly 4 x 3 x 4 cm in dimension). Is fate trying to impose some perverse symmetry on poor, beleaguered me? Will I end up looking like a cobra? My interventional radiologist said that he will try to ablate the new tumor if he can, but that it's location--up against a major artery--might make this impossible.

With results like this, I think I should be able to continue with school, but I will wait until my next doctor's appointment before completely jumping to this conclusion. There is some cause for concern with the liver, however. The changes in my digestion in recent weeks seem consistent with the liver problems that I had last April, rather than the bowel problems that I had last August, so I'm thinking there was some significant growth in the liver. If we have to have tumor growth, this is not the place we want it.

Finally, the date is set for the neck tumor ablation: February 17. Much later than I would have liked, but such is life. I'm feeling pretty good; counting the days until my next round of chemo. Ten to go...

Wednesday, January 28, 2004

21st century medicine

I spoke with my new interventional radiologist yesterday, and it looks like we're ready to go ahead with the radiofrequency ablation of the tumor in my neck. They just have to get back to me about when they were able to schedule the procedure. A large needle will be inserted in the tumor, small prongs are then extended from the tip of the needle. Heat generated between the prongs then kills whatever tissue lies between. No incisions required. Unfortunately, given the location and size (kind of a squished racquetball) they will have to use general anesthesia. Depending on how I recover from the anesthesia, I should be able to go home the same day. The doctor said he should be able to kill almost all of it, but he will definitely have to leave the little bit that is in close proximity to a major nerve. This procedure will not increase my long term chances of survival, but it should greatly improve my day-to-day life. I'm pretty excited.

Meanwhile, I remain in blissful ignorance of the results from the CT scans that were done last week...

Sunday, January 25, 2004

recently read: Calvino

This is one of the most remarkable passages I've ever read in fiction. From Italo Calvino's novella, The Nonexistent Knight:
He [the young knight, Raimbaut] found him [the nonexistent knight, Agilulf] under a pine tree, sitting on the ground, arranging fallen pine cones in a regular design: an isosceles triangle. At that hour of dawn Agilulf always needed to apply himself to some precise exercise: counting objects, arranging them in geometric patterns, resolving problems of arithmetic. It was the hour in which objects lose the consistency of shadow that accompanies them during the night and gradually reacquire colors, but seem to cross meanwhile an uncertain limbo, faintly touched, just breathed on by light; the hour in which one is least certain of the world's existence. He, Agilulf, always needed to feel himself facing things as if they were a massive wall against which he could pit the tension of his will, for only in this way did he manage to keep a sure consciousness of himself. But if the world around was instead melting into the vague and ambiguous, he would feel himself drowning in that morbid half light, incapable of allowing any clear thought or decision to flower in that void. In such moments he felt sick, faint; sometimes only at the cost of extreme effort did he feel himself able to avoid melting away completely. It was then he began to count: trees, leaves, stones, lances, pine cones, anything in front of him. Or he put them in rows and arranged them in squares and pyramids. Applying himself to this exact occupation helped him to overcome his malaise, absorb his discontent and disquiet, reacquire his usual lucidity and composure.
I'm not sure how much you can appreciate this when it is removed from the context of the story, but there it is. My fondness, no, that's not strong enough, my passion, for Calvino continues to grow with time. There is something effortless, beautiful, and right about his language. Reading him is like listening to Mozart: first, the work as a whole is perfect; but within the piece there are little figures, inventions, flights of fancy, feats of the most elegant virtuosity--often completely unexpected-- that bring a smile to the listener's or reader's face. I won't even comment on Calvino's other novella in this particular volume, The Cloven Viscount. Never has wisdom been so delightful.

Saturday, January 24, 2004

new musical director at SLSO

I was pleasantly surprised last night to learn that the St. Louis Symphony Orchestra had hired conductor David Robertson to replace Hans Vonk, who retired a couple of years ago. The SLSO is one of the big (and admittedly few) perks to living in St. Louis. It's great that they were able to land one of the "top American orchestra conductors" (NY Times). I first learned about Mr. Robertson in a big NY Times Magazine cover piece about a year ago. He came to visit the SLSO a couple of times last spring, and I wondered whether St. Louis really had a chance of getting this guy. Whaddya know. Good for St. Louis.

Friday, January 23, 2004

recently read: Bernal Diaz

File this book, The Conquest of New Spain, by Bernal Diaz, under the Josh Marshall reading plan. Let me heartily second Mr. Marshall's recommendation.

Diaz was a soldier with Hernando Cortes' expedition and two other, smaller, voyages of exploration in what is now Mexico. The collision between the Spaniards and the Aztecs has to be one of the greatest and most tragic stories in human history. Thank Huichilobos Diaz survived to give his account of it. I would like to learn more, much more. I'd like to take a trip, see the ruins of the Aztec civilization...

scans done, advice received

I had CT scans done of the neck, chest, abdomen and pelvis yesterday. I had expected only the chest and neck, but I think a nurse messed up and either scheduled them all, and/or didn't inform me that she scheduled them all. An error in my favor. My Philly doctor wanted me to wait another week and a half before having the abdomen and pelvis scans done, but oh well. Ten days won't change much. So I'll be getting the full scan results sometime next week, much sooner than I expected. I still haven't heard from my interventional radiologist. He's supposed to review the scans and get in touch with me. I'm still hoping to have the neck tumor ablated next week.

Several days ago I sent an e-mail to my Vanderbilt oncologist updating him on my situation and asking for advice about what we might do next if it turns out that I'm failing this trial. His advice was: 'don't stop this treatment until there's no doubt that it isn't working.' Not exactly the response I expected or hoped for. It's sink or swim with this trial, it appears. I guess that simplifies things.

Wednesday, January 21, 2004

cycle six

My blood was fine on Monday so I finally, after a two-week delay, got my chemo yesterday. I would expect a short-term reduction in abdominal pain. Meanwhile, further up the body, I'm getting CT-scans of the chest and neck done tomorrow here in St. Louis. This is for my new interventional radiologist, the latest addition to my constellation of doctors. It's possible that I could have the tumor in my neck radiofrequency ablated as early as next week. I won't be getting new CTs of my abdomen and pelvis, the more interesting pictures as far as my Philly doctor is concerned, for another couple of weeks. He wanted to allow the chemo time to take effect. I suppose that's okay, but it does complicate the timing of my decisions regarding school.

Speaking of which, there I was sitting in a classroom today, for the first time in almost a year. Strange, but nice. Hopefully I will have a very busy semester ahead of me. I only plan to take one class for credit, but I'll be sitting in on two more, plus research, plus some other things. Busy is good.

Friday, January 16, 2004

if it isn't the platelets, it's the neutrophils

Back in dreary St. Louis. The neutrophils, sneaky little devils, were just under the minimum level and I wasn't able to get chemo. I did get more of the Bayer drug, and I did see my doctor. Other than the neutrophils, my blood looked great. The platelets were "sky high". If the neutrophils are more cooperative this coming Monday, I will fly back up to Philadelphia to get chemo. And, yes, that chemo will be at a reduced dosage.

As for the tumor in my neck, my doctor agreed that something should be done. He suggested that we try one of the newer, not-so-invasive procedures before resorting to surgery. His favorite is radiofrequency ablation. Fine with me. I'm not so keen on acquiring another scar, especially if there are smarter ways to get the job done. I spoke with my long lost St. Louis oncologist today, and he should soon refer me to an interventional radiologist at Barnes-Jewish (the hospital associated with Washington University Medical Center). I'm kind of excited about the prospect of attacking this thing, even if it isn't that important in the long run. Getting rid of it would significantly improve my quality of life.

My doctor was not as pessimistic about my situation as I have been recently. That, along with the fact that I've been feeling really good the last couple of days, has led me to change my mind (again) about school. I am returning to my original plan: start the semester, get scanned in a couple of weeks, and then decide whether or not to pull out. This makes more sense. You gotta allow for pleasant surprises, however unlikely.

the blue and the black

Introducing a laughably modest innovation here at Cancer Blog. Post titles in blue will indicate content that is unrelated to my health condition (metastatic melanoma). All health related posts will remain titled in default black. I will slowly update the archives.

Tuesday, January 13, 2004

more chemo, I guess (*yawn*)

My bone marrow seems to have recovered. Platelets okay, neutrophils (the youngest of the white blood cell clan) close to the minimum mark for chemo. Should be fine by Thursday. Tomorrow is a travel day to Philadelphia; Thursday is doctor's appointment/chemo/travel back to St. Louis day. Let's hope I make my flight Thursday afternoon. It could be close.

No other news, except that I felt damn good yesterday, and hence my mood was far less apocalyptic than it had been the day before. Today I feel okay. But the facts haven't changed: the tumor in my neck is still there; my abdomen is still unruly. But at least my gut had no problem with the large quantities of sushi I subjected it to last night. Appetite okay? Check.

Sunday, January 11, 2004

into focus

Time is slowing down. My decision about whether or not to return for the spring semester has been made: no way. There were two major developments this week, both of them bad. On Tuesday, the tumor in my neck began to ache. It has continued to ache, sting, and hurt in various ways ever since. It seems to be growing upward toward the ear. I will push my doctor for surgery, a procedure that would be simple, and in the long run cost me only a scar. But the removal of this one tumor--granted it's an especially troublesome bastard--will not improve my chances at winning the war. The second unfortunate development happened yesterday morning. An old familiar pain returned to my right abdomen, just below the rib cage. It has been fairly steady ever since; nothing severe, just enough to distract you. Is this the liver? The stomach? Does it really matter? I last had this particular pain back in August. Come to think of it, my neck was also acting up at that time. The progress that we've made over the past few months is slipping away.

I will have a blood test tomorrow morning. If the platelets are okay, I'll call Philadelphia to see if I can fly up for a doctor's visit and chemo, presumably at a reduced dosage. I'm in an awkward position regarding my doctors. My Philadelphia doctor is supposed to hand me off to my primary doctor at Vanderbilt as soon as Vandy's able to get their version of this trial up and running; the start date continues to be postponed. My doctor in Philadelphia is specific to this trial, so he won't be of much help in speculating about what to do if we determine that, yes, this treatment is no longer working. The bottom line is that I probably won't learn much this week. The most dramatic thing that could come out of the Philly trip is that he recommends surgery on the neck, which would probably be done back at Vanderbilt. I would expect that he would give me more chemo and wait for the next scan results before throwing in the towel and sending me back to Vanderbilt. He might decide to move up the date for the CT scans, but probably nothing more.

So what comes next? Well, for starters, it is premature for me to conclude that things are going to hell in a hand-basket, but suppose that this is the case. We'll try something else, of course. But there are difficulties. When you switch from one trial to the next, you have to go a month without any treatment; this is so that the treatment from the previous trial doesn't contaminate the data for the new trial. My disease, if left to itself for a month, would probably go nuts. One way to address this problem is to get a round of biochemotherapy immediately following stoppage of this current treatment. Biochemotherapy is a nasty concoction of several chemotherapy drugs (not Taxol or Carboplatin), interleukin, and interferon. It is the traditional 'last resort' for melanoma patients and my Vanderbilt doctor, correctly, considers it cruel and unusual punishment; I would probably be laid up in the hospital for a week or two in recovery. Another possibility is that he will put me on light interferon. In my doctor's experience, this has been about as effective in buying patients time as biochemo, but without all the collateral damage. If we can pull this off--buying the time, that is--what clinical trial should I get into? I have no idea, but I suppose this is something I should start reading up on. I'm sure my Vanderbilt doctor has a few other trials going on himself, and I'm also sure that I won't be eligible for the exotic stuff being done at the NIH--for the same reason I wasn't eligible in August: my bilary stent.

But I've been here before. I was in worse shape last summer during the months of June and August. The difference now is that I have probably failed the most promising treatment option going. Maybe something new has emerged in the last few months. If so, it would be unproven, but it might be the only chance I've got. Until then... Time to rejoin Netflix.

Thursday, January 08, 2004

Ever read The Onion?

I would be remiss in my duties as a young guy with both cancer and a sense of humor if I didn't link to this article.

Monday, January 05, 2004

What lies ahead?

The tumors and I are relocating to St. Louis today. I kept my extraordinarily cheap apartment in St. Louis during these last ten months, so the ‘move’ will be a small one. As far as treatment goes, I will just fly from St. Louis to Baltimore on Southwest for this next round of chemo instead of Nashville to Baltimore on Southwest. Once I switch to Vanderbilt, I will be driving to Nashville.

For what it’s worth, the platelets today were 57,000. This was up from 38,000 on Friday, so at least I’m headed in the right direction. I was supposed to start cycle six tomorrow, but given my recent difficulties, I’m happy to hold off on the chemo for a while. I have an ample supply of the Bayer drug to keep the tumors in check (hopefully). I’m still really tired, but otherwise I feel okay.

This latest hospitalization was only partly responsible for my reconsideration of the decision to return to school this spring. There were a couple other potentially more important factors. The first is the fact that the tumor in my neck seems to have increased slightly in size over the past couple of weeks. Also, the tumor in my groin might have also increased. I was not expecting this sort of growth. The second factor is my GI tract. I’m just not processing food as well as I had been six weeks ago. My system is behaving like it was in September: not so good. My appetite has also dropped off. These symptoms could signal tumor growth in the abdomen. So I’m getting some negative signals and that, coupled with the fact that the chemo regimen will most likely be reduced in the months to come, is cause for concern. Nevertheless, I’m going to give school a shot. It’s not that big a deal if I have to withdraw—I should know, I’ve done it twice already—and I will have some new CT scans in late January, which will give me plenty of time to withdraw within two weeks of the start of the semester (January 20) if things look bad. It’s more convenient, from an administrative standpoint, to withdraw early.

So that’s my story; so much for a sense of security. A few weeks ago I believed that my condition would be relatively stable or improving for at least the next five months. Now I have no idea.

Saturday, January 03, 2004

recently read: Hardy

Ahh, there's a special place in my heart for mathematicians. I particularly enjoy their prose. Terse, laconic, to the point. They can't bear the idea of writing anything superfluous. So if you have a spare hour or two, let me recommend G.H. Hardy's autobiographical work, A Mathematician's Apology. Trust me, it was torture for Hardy to write even this slim volume of non-mathematics, but I thank him for it.
It is a melancholy experience for a professional mathematician to find himself writing about mathematics. The function of a mathematician is to do something, to prove new theorems, to add to mathematics, and not to talk about what he or other mathematicians have done. Statesman despise publicists, painters despise art-critics, and physiologists, physicists, or mathematicians have usually similar feelings; there is no scorn more profound, or on the whole more justifiable, than that of the men who make for the men who explain. Exposition, criticism, appreciation, is work for second-rate minds.
As the possessor of a second-rate mind, I have to grudgingly agree. Why be a mathematician? Why be an economist? It would be nice if, when I come to the end of my career, I could make as convincing a defense of my life's work as Hardy's. But sadly, I highly doubt it. Hardy himself is highly skeptical of the way he passed his years. But the case for mathematics is a strong one. There is a part of this book that hits close to home for me. I have struggled over the last ten years or so over the question of what I should do, what career I should choose. Hardy asks the question 'why do men do the work that they do':
Their answers, if they are honest, will usually take one or other of two forms; and the second is merely a humbler variation of the first, which is the only answer which we need consider seriously. (1) 'I do what I do because it is the one and only thing that I can do at all well. I am a lawyer, or a stockbroker, or a professional cricketer, because I have some real talent for that particular job...' I am not suggesting that this is a defence which can be made by most people, since most people can do nothing at all well. But it is impregnable when it can be made without absurdity... (2) 'There is nothing that I can do particularly well. I do what I do because it came my way. I really never had a chance of doing anything else.' And this apology too I accept as conclusive. It is quite true that most people can do nothing well. If so, it matters very little what career they choose, and there is really nothing more to say about it. It is a conclusive reply, but hardly one likely to be made by a man with any pride; and I may assume that none of us would be content with it.
Again, sadly, I think that I fall in the second category. My misfortune is that I am able to do many different things pretty well, but no one thing really well. I'm the classic jack of all trades, etc., sort of guy. Naturally, when I was growing up, my elders pegged me as an engineer, for they were engineers, and I was to follow in their footsteps. Unfortunately, although I'm good at many things, I'm not an engineer. Hardy is correct, I would be happier if I could do one thing really well.

I have always been fascinated with virtuosity, the mastering of some form of expression, or framework of thought, be it language, music, painting, math, or even economics. To me, the attainment of virtuosity is when technique, which in itself is unimportant, ceases to be a significant constraint on the creativity of the individual. Some people are capable of virtuosity; most are not. Moreover, a substantial number of people might be capable of virtuosity in a genetic sense, but only if it the technique is cultivated from an early age. I suspect that I fall in the latter case, and that I probably will never be able to do anything really well. It certainly helps to have wise elders. Ideally, children should explore many different subjects in their education, and their elders should be able to correctly identify and develop their particular talents, whatever they may be.

Most of this very short book is quoteworthy. If you have any interest in mathematics, however small, it's a must read.

recently read: Orwell

I finished Homage to Catalonia a couple of weeks ago, just before my recent stay in the hospital. The book is a non-fiction account of Orwell's experiences fighting the fascists during the Spanish Civil War. Thanks to Monsieur Hitler, the Spanish Civil War has always seemed rather historically insignificant to me. After reading Orwell's account, it still does. It seems to have been hugely significant, at the time, to British and Western intellectuals who, like Orwell, were smitten with certain communist and socialist fantasies that were in the air. It didn't take long for Hitler and Stalin to blow the Spanish Civil War into irrelevance for even these intellectuals.

After reading Orwell's masterful Burmese Days, this book was a bit of a letdown. There is something dated about it. A significant chunk of the book is devoted to an expose of what really happened in the war, not what the biased British and American press had reported. The target audience seems, at times, to have been his fellow intellectuals, leftists, journalists or friends. I confess that it was hard to summon much interest in the numerous political parties and minor political players whose complicated interactions Orwell so carefully disentangles. Dear God, what's happening in Germany right now? Or the Soviet Union? This tedium does serve an important function, however. It helps to show how Orwell's own political naivete was exposed. This travel account contains the beginnings of the ideas of 1984. Orwell learns the danger of a politics that cares nothing for truth, and sees the public perception of events as something to be molded by the tools of propaganda. It's really a profound book. But I quote only two unprofound passages:
It is curious that when you are watching artillery-fire from a safe distance you always want the gunner to hit his mark, even though the mark contains your dinner and some of your comrades. (p. 84)
Later on, Orwell is shot in the neck and wounded. It's the perfect opportunity for him to employ his amazingly clear and unsentimental powers of description:
Roughly speaking it was the sensation of being at the centre of an explosion. There seemed to be a loud bang and a blinding flash of light all round me, and I felt a tremendous shock--no pain, only a violent shock, such as you get from an electric terminal; with it a sense of utter weakness, a feeling of being stricken and shriveled up to nothing. The sand-bags in front of me receded into immense distance. I fancy you would feel much the same if you were struck by lightning. I knew immediately that I was hit, but because of the seeming bang and flash I thought it was a rifle nearby that had gone off accidentally and shot me. All this happened in a space of time much less than a second. The next moment my knees crumpled up and I was falling, my head hitting the ground with a violent bang which, to my relief, did not hurt. I had a numb, dazed feeling, a consciousness of being very badly hurt, but no pain in the ordinary sense. (p. 185)
The wound ended the war for him, and he soon returned to England to make a full recovery. I highly recommend Homage to Catalonia, but I recommend Burmese Days even more.

Thursday, January 01, 2004


I slept a solid nine hours last night. I would have slept more but my one-year-old niece decreed that everyone in the house must be awake at seven. That's okay. Looking forward to more good sleep tonight. In the hospital I was only able to get five or six hours at the most. Even with earplugs, the racket from the nurses' station outside my room managed to keep me up.

Still feeling pretty lousy. It will probably be a few more days before I fully recover. Nothing like a two-week illness to ruin the ol' holidays. I still have to figure out what I'm going to do about school. One minute, I think I should return, the next, I think there's absolutely no way I can return. Today, I'm leaning towards returning.


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