Cancer Blog

Tuesday, April 27, 2004

day one

Busy, busy, busy... I met with my doctor this morning. The MRI of the brain was all clear. This is rather astounding, given that the brain is, unfortunately, one of the more common places for melanoma to spread. The radiologists had not gotten around to analyzing my CT scans until this morning, so my doctor was only able to give me a vague report. Everything was a lot worse, just as expected, and I could have told you that by looking in the mirror. I don't really have much interest in learning more about the gory details, so I won't follow up with him about it. The next set of scans will be far more important. These just established the baseline for the trial.

After a couple of hours of pointless hospital waiting, we were led over to a different part of VUMC where the experimental drug was to be administered. The infusion took 5 seconds. The bulk of the time, one hour, is spent, post infusion, getting your vital signs checked to make sure nothings going out of whack. Since today was my first infusion, it took us about three hours from start to finish. Normally it should take two. [The extra hour is because of a stupid hospital regulation that prohibits the hospital pharmacy from mixing the patient's drug until said patient has arrived and been seen to look 'okay' by a nurse. Or something like that.]

We will repeat this on Friday and I start the Temodar (a chemotherapy drug) next week. The drug I got today is supposed to make the melanoma cells more vulnerable to the Temodar. Possible side effects: rash, diarrhea, fatigue, neuropathy (numbness in the extremities).

Monday, April 26, 2004

a tidy profit

Well, my connections with the previous trial are completely severed, personally and financially. The head nurse from Philadelphia called to see how I was doing and wish me luck. They will 'continue to follow my case through my doctor at Vanderbilt' (who is a colleague of my previous doctor in Philadelphia), to paraphrase her words. Like I said, the people up at the University of Pennsylvania were great to work with--very professional--despite what had to be a heavy patient load.

I also liquidated my Onyx stock. Around midday I checked the ol' stock quote and noticed that it was up 16.5%. I don't have to see that twice. The culprit was some good news with a related biotech stock which spiked the whole sector. So I'm out with a 140% profit on my investment from September of 2003, and left with a result that I did not expect: I thought that there would be a strong positive correlation between my health and the stock price. As it happened, when my health started failing the stock price started rising. I guess there's never a sure thing in investing.

Friday, April 23, 2004

more blood

We ran into a small surprise when the lab results from Monday showed low hemoglobin, red blood counts, and platelets. More labs yesterday confirmed those results, and today I received two units of blood. I'm not sure if there is a critical value above which the hemoglobin has to be for us to start the trial, but with a value of 7.8 (the normal range is 14-18), my hemoglobin is very low. The platelets were at 63,000. The biopsy yesterday was routine. As I expected, the tumor in my lower back was too big for resection. They just did a 'core' biopsy, taking several little chunks out of it. And, finally, my screening week is done.

The transfusion should help me feel a little bit better. Along with everything else, I haven't had much energy at all. Last night, feeling terrible, I went back up to 45 mgs of morphine before going to sleep. I was rewarded with one of the best nights of sleep I've had in a while; there were many deep, satisfying dreams. It's almost worth living just to leave open the possibility of having dreams like this.

Wednesday, April 21, 2004

labwork and biopsies and scans, oh my

I'm smack in the middle of my 'screening' week. On Monday they did labwork, an EKG, and a chest x-ray. This afternoon they will do CT scans and an MRI of the brain. And, finally, tomorrow morning will be the biopsy. The port was 'accessed' for the first time on Monday. The process is slightly more involved than I had expected, but overall, it was far easier than trying to go through one of my battered veins. I asked the highly competent nurse whether she thought they could use the port for the contrast during CT scans. Unfortunately, she said that's unlikely. I'll find out for sure this afternoon.

Last week I noted that we were going to increase the morphine from 15 mgs to 45 mgs. Well, I tried that for a few days, and then decided to back it off to 30 mgs. This has worked better. The fatigue this past Saturday--from the morphine, I suspect--was really paralyzing. I've also been able to get by on only two Percocet at night to help with sleep.

The tumors haven't grown outrageously in the past week. The most noticeable growth is definitely with the large, ablated tumor on the right side of my neck and face. If I cup my hand around it, it's as if I'm holding a grapefruit. It extends from the middle of my right ear to midway down my neck, and is about the same dimension across. Amazingly, I haven't had much pain. A good portion of the area is numb, most likely as a result of the ablation. One interesting development, however, is that the skin directly under my chin, kind of underneath the center of my jaw, has gone numb. I suspect that some disease in the neck somewhere has taken out a nerve. Fine with me; numbness is better than pain, I guess. But it's still strange.

Wednesday, April 14, 2004

trial starts... on the 27th?

The doctor's appointment that was supposed to happen yesterday was rescheduled for today. My doctor decided to increase the MS Contin (morphine) dose to 45 mg from 15 mg. This should translate into better sleep tonight and hopefully enable me to back off the Percocet. The rest of the appointment time was spent discussing the new trial with the nurse in charge. Next week, I'll have CT scans done as well as the rare and always exciting MRI of the brain. My last MRI of the brain (an all clear) was last August. Even if they were to find a brain tumor, I don't think our course of action would change; but let's not think about that unless we have to. Sometime next week, they'll also take a biopsy of some tumor from somewhere. No dearth of tumor to choose from. My doctor wants to use the biopsy as an excuse/opportunity to have the surgeon do a full resection of a particular tumor in my lower back that is both easily resectable and quite annoying. He will leave it up to the surgeon. I'm all for it, but I have a feeling that the surgeon will think that the tumor is too big to remove altogether.

So, with all this pre-trial stuff to get through, the starting date for the actual beginning is now, tentatively, Tuesday, April 27. Wow. Almost two more weeks to go without any anti-cancer anything. The trial itself goes in nine-week cycles. My doctor admitted that these were rather long for my particular case, but believed that we should have a decent idea after 4-6 weeks whether or not the trial is working.

Saturday, April 10, 2004


The pain in my right leg has increased in the last couple of days. When I'm not in the 'sweet spot' (minute 27 to 120) of a Percocet, the act of hobbling around is difficult. I think my driving days are over for now. On the bright side, as long as I sit or lie down in the proper position, the pain is not too bad; it's when I try to move that it really hurts. So I was still able to get a decent night's sleep last night, and the current level of pain medication should hold me through this Tuesday, my next doctor's appointment.

Fortunately (I'm always looking on the bright side) the pain in other areas hasn't really increased in the last couple of days. And the dull soreness from the portacath surgery is fading away. Maybe I'll have to get crutches or something, I don't know. I'm still able to hobble around short distances, but at this rate, I'm not sure how much longer I'll be able to do even that. But I can feel pretty confident that walking around on it won't make things any worse; it's not at all like a sport's injury. So maybe I'll be able to get by with an increase in pain killers until we start the new trial in ten days or so. We shall see.

Thursday, April 08, 2004

easy access

I now have a 'portacath' in my chest. Hooray! No, seriously, this is a very good thing. Now if anyone wants to draw blood they can go straight to my portacath and draw to their heart's content. No more searching for veins in my arms or hands. It's supposed to be completely below the skin so there shouldn't be any inconvenience with showering or anything. I'll see how painless it is when I get blood drawn this coming Tuesday.

This was about as minimal as surgery can get, but it was still surgery. So I had to spend a total of six hours at the hospital this afternoon for what amounted to a twenty minute procedure. Fortunately there was no general anesthesia, and thus no nausea. They just gave me some really pleasurable crap through an IV and local anesthesia. I don't anticipate much significant post-op pain. This little wound can't compete with what I already got going.

Wednesday, April 07, 2004

a touch more pain

On a scale of 1 to 10, my pain level has jumped from 4 to 5 in the last day or so. I had to take an extra Percocet last night in order to get to sleep. The two main problem areas are my right leg and my shoulders. The tumor in my right groin continues to grow. I have to limp around. The new tumors in my right shoulder and some not-so-new tumors in my left shoulder are combining to provide the shoulder pain.

The main problem with sleep is the difficulty in finding a comfortable position. For weeks now I've been unable to sleep on my back or stomach because of the disease in my back. Now the shoulder and leg pain makes it less comfortable to sleep on my sides. I guess we'll be increasing the pain medication soon.

Tuesday, April 06, 2004

movie comments

Since I doze off after five minutes of reading these days, I've been watching a lot of movies. Here are some comments.

Capturing the Friedmans. I liked it. As I recall, the critics liked it too, but I had encountered a fair number of people who hated it and felt that they were manipulated by the film makers. I didn't feel this way. I could dig deeper with this 'review', but frankly, I don't feel like up to it.

Spellbound. Quite a softy after the Friedmans, but kind of disturbing in it's own way. I was the sort of kid who purposely missed words in spelling bees at school to avoid the sort of negative attention that academic success draws on a bright kid from his Southern peers. Not that winning proves anything besides an above average competitive drive and memory. Last year, while talking with a hispanic friend about spelling bees, he pointed out that the very idea of such a thing was absurd with the Spanish language. That hadn't occurred to me before; oh, to have a consistent language instead of the linguistic chaos that is English. Personally, I prefer French. Like the Friedmans, Spellbound tries to draw bigger conclusions about trends in America from the cases examined. They were fairly successful, I think, but, I suspect that the kids they profiled were among the more normal ones of the whole group. I enjoyed this movie.

The next one's not a movie, but I recently watched the first season of Curb Your Enthusiasm. I really enjoyed it. It's kind of like a higher proof version of Seinfeld: all the elements of Seinfeld that I enjoyed most are distilled into a more potent form. Also, it's great to be unconstrained by censorship.

Modern Times by Chaplin. I really liked The Gold Rush when I saw it last year, but this one didn't really do it for me. That's about all I have to say on the matter.

American Splendor. Yeah, yeah, good film. I'm not a comic book guy, and I really knew nothing about this aside from a couple of reviews I read a long time ago, but it was very good. There are some similarities between Larry David (from Curb Your Enthusiasm) and the main character Harvey Pekar; they're both lovable curmudgeon types. I guess I see myself as some sort of lovable curmudgeon, hence the sympathy for these sorts of characters; I sure got the baldness thing going for me. I knew nothing about his 'Cancer Year'. For those of you who don't know, Harvey Pekar writes an underground comic about himself entitled American Splendor. Anyway, he gets lymphatic cancer, and at the end of a year of successful treatment he and his wife publish a comic book about their experience entitled Our Cancer Year. Similar to what I'm doing here, I guess. I recommend it.

Let's see... Ikiru, or 'To Live', by the great Japanese filmmaker Akira Kurosawa. This was one of his early and lesser-known works. Read the following Netflix description and you'll see why I was drawn to it:
After finding out he's terminally ill with cancer, a government official (Takashi Shimura) quits his job to enjoy his last year alive, but with no family or friends, he faces a lonely death. Determined not to die alone, he heads to a bar to get drunk for the first time. Hoping to drink himself to death, he instead meets an artist who takes him to bars all over the city, and later, a female co-worker sways him on the value of leaving a legacy.
This is a very good film, there's no doubt. But the main character is utterly repulsive. It was hard for me to identify with him or sympathize with him in the least; I just wanted him to die already and get off the damn screen. Fortunately, the film is about much more than this one pathetic bastard; among other things, it is also an indictment of the Japanese bureaucracy. A bit tedious at times, but well worth watching.

The evening after I watched Ikiru I saw a very different 'Japanese' film, Lost in Translation. Damn did Miss Coppola get a lot of mileage out of Tokyo and Bill Murray's face. I'm not impressed. Maybe it's because I was feeling miserable at the time, but I almost turned this movie off. The two main characters did not interest me in the least. Somehow, Miss Coppola managed to suck the humor out of Bill Murray, and... for God's sake, why the hell should I give a damn about the Johannson character? First of all, let me get this straight. She just graduated from Yale. She's been married for two years. How many young women these days from New York City get married when they're juniors at Yale? She majored in philosophy. I don't know what sort of philosophy they teach at Yale, but I suspect that it's not the sort of stuff that leaves students susceptible to the pop Eastern shit that's supposed to make this character 'deep', or at least confused. She's duly equipped with an annoying laugh, always a minus in my book. What annoyed me the most was how typically American and vacuous the two main characters were. We go to a foreign country and it's still all about us. Why can't we get over our fucking selves and our petty problems and look out at the world? Why can't we show some goddamned respect? It'd be different if we were remotely interesting... My advice? Don't see this movie. Instead, watch Manhattan.

Dare to criticize... What did I see next? Of course, another comedy series, this time from Britain: The Office. Very funny. British humor is always superior to American efforts, and it's a damned shame that we don't get BBC America on my parents' cable system. I first learned about this show in a Slate piece last year. Has anyone noticed the similarities between the main character, David Brent, and our honorable president George W.? Highly recommended. Here's a more recent article from Slate, and you can go here to watch some clips from the show.

Ah yes, yesterday I watched Lolita. For some reason I've never read any Nabokov. But this movie was excellent. Directed by Kubrick, you see. There's so much humor in every one of his films, it's brilliant. The Peter Sellers character was really quite good. You gotta see this classic; it's head and shoulders above the rest of this bunch.

And today I watched, of all things, Airplane. It's so hard to find decent comedy. Yes, I've seen this film many times, and no, I didn't enjoy it this time. I don't know what I was thinking. It's better than Lost in Translation, at least.

That is all.

Monday, April 05, 2004

watching the days go by

Not long ago I turned 27. This is an accomplishment. My 28th birthday will be much more difficult to attain. My birthday also marks, approximately, a couple of key anniversaries with my disease. It was around my 24th birthday, in 2001, that I had tumor resected from my left axilla. At that time I was at stage III and, while I still had a year of Interferon ahead of me, I had every intention--and better than even odds--of putting this thing completely behind me. It was shortly after my 25th birthday, in 2002, that I noticed a small lump on my right shoulder blade. I was at stage IV.

My 26th birthday was less eventful. I was in Nashville, my liver was rapidly filling with tumor, and I was recovering from a month-long episode of jaundice. I didn't expect to see my 27th birthday, but at least I knew there were a couple of decent options out there that we hadn't tried. Now, a year later, we've had some success with those 'decent' options, but not enough.

A birthday let's me think in terms of years. Now it's back to my days and weeks. Another week is gone. Two have passed since I stopped taking the BAY drug. Even though I've noticed a couple of new marble-sized tumors above my right collarbone, I think I'm doing pretty well overall; I haven't had to increase the pain medication. But we still have another two weeks to go before I can start the new trial. As we get further and further away from the last dose of chemo, the rate of tumor growth will increase.


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