Cancer Blog

Sunday, March 28, 2004

pain management

I've settled into a schedule with the pain medication which allows me to sleep fairly well while not leaving me too drugged up. The new pain medication I'm on is 15 mg of MS Contin, or slow-release morphine. I take one tiny pill every 12 hours. I can supplement this with the Percocet as needed. I've been taking the morphine at 10 a.m., going the day without the Percocet--which leaves me reasonably alert mentally--and then taking a Percocet in the evening as the morphine wears off. I then take another morphine pill plus a Percocet at 10 p.m. I can usually sleep until 5 a.m. or so. Another Percocet then gets me another couple of hours of sleep and carries me through to my 10 a.m. morphine.

With the pain medication, I'm feeling okay. My appetite is still way off, but at least it's stabilized. My right leg has been feeling better, but it's just a matter of time before we have problems in that area; the tumor in the groin has visibly grown in the past couple of weeks. The wound in my neck continues to discharge all sorts of disgusting debris. I have to change the dual band-aids twice a day. I guess that brackish muck is what dead tumor looks like. The ablation seems to have destroyed the center of the tumor, but, much like a doughnut rising in an oven, the unaffected perimeter continues to expand. But I'm fortunate that there is no pain. From that standpoint, I have to say that the procedure was a success.

My next appointment with my Vandy doctor is on Wednesday, April 13. I will not be starting the trial at this time, just the screening for the trial. I will probably start the trial a week after that. This seems like a very long time. I'll be making an appointment tomorrow to finally get this port installed in my chest.

As I said, my quality of life with the pain stuff is pretty good right now. This can't last long. I've always regarded the beginning of steady pain medication as the beginning of the dying process. The pain could escalate in any number of locations. As we escalate the pain medication in response, more and more of my brain--more and more of the true me--will be shut down; not a happy thought. But the alternatives are much worse. Last week, I tried to go a couple of days without the pain medication. I was completely miserable. While you might not be drugged, the bad signals bombarding your brain drown out everything else, and you become far more useless than you would be under the pain medication. From here on out, we'll be trying to choose the best of a lot of bad options.

Tuesday, March 23, 2004

moving on

If I were completely consistent, I'd sell the Onyx Pharmaceuticals stock that I bought this past September. Today I'm officially out of the Bay/Carbo/Taxol trial. In three weeks or so, I'll enter a new trial at Vanderbilt. The new trial--I'm not even going to bother so much with the details--involves my old friend Temodar plus an experimental inhibitor-style drug. In the mean time, I have an intriguing new pain medication to play with, and the usual post-chemo blood tests. The sooner the better as far as switching goes, especially since I've just received a dose of chemo. Hopefully the chemo will be enough to see me through this transition period.

But there isn't much legitimate hope left for my case. My Vanderbilt doctor, whom I respect for his honesty, basically said that we can either do this trial or let things take their course. Since I have nothing better to do, we might as well do this trial. It will probably buy me some time, if nothing else, and the side effects aren't as severe as those in the trial I've been in these past seven months. So what the hell.

And I won't be selling my Onyx stock either (although I should consider locking in my 60% gains). I have only good things to say about the trial and the people involved with it. Today my Vanderbilt doctor told me that, in August, I was far too sick of a patient for careerists like Steve Rosenberg at the NIH to get near. But the people at Penn took me in and gave me another shot. In a way, my doctor at Vanderbilt is doing the same thing. We both know that having my data point in his trial won't help his career in the slightest, but he understands what's important. Okay, now I'm making myself feel guilty.

Netflix is frighteningly efficient: I signed up Saturday afternoon and two DVDs arrived today. An Amazon order with four CDs worth of spectacular music should arrive by Friday.

Monday, March 22, 2004

in Nashville

I'm safely back in Nashville after having received my chemotherapy in Philadelphia this past Thursday. My Philadelphia doctor said that we should consider switching to a different clinical trial. The latest scans did not show unambiguous progression--as carefully defined by the trial specifications--but they were close. Until we find something else, it appears that I will continue with this trial. I have an appointment tomorrow with my doctor at Vanderbilt.

Once we do find something else, I will probably have to face the mandatory thirty day waiting period without treatment before we can start. This will be very difficult. I'm already experiencing a steady pain--primarily in the lower back--that makes it impossible to sleep without pain killers. My Vanderbilt doctor has a couple of trials in mind, both of them at Vanderbilt, that look like variations on the same strategy: chemotherapy coupled with a new 'inhibitor'-style drug. I guess this is the (near-)future for melanoma treatment. But he has never been as enthusiastic about these other trials as he has been about the one I'm currently failing.

Tuesday, March 16, 2004

waiting for cycle eight

I'm still in St. Louis. I couldn't get on a flight yesterday to Baltimore, they were all sold out, and then I found out that my Philly doctor will be out of town on Wednesday. So I won't be leaving until tomorrow and I won't be getting chemo until Thursday. And so I won't be returning to Nashville until Friday, not that that matters a great deal.

Man, I'm still feeling awful. I've been living 'from Percocet to Percocet' the last couple of days, and I'm not liking it. Eating hasn't been much fun either. I'm hoping that the chemo will provide at least a temporary boost to my physical well-being. It's to the point now where I'm looking forward to being safely back in Nashville.

Saturday, March 13, 2004

dazed and infused

If you thought the last post was 'feverish', you're exactly right. That night I had a 102 temperature. The next morning, Tuesday, the fever was down--thanks to some Ibuprofin--but then it shot up again by midday. I went to the emergency room that afternoon.

And I finally came home yesterday. The most likely candidate for infection was the ablation wound on my neck, but they weren't able to pin anything down. I received a lot of antibiotics via IV, some potassium, and finally, two units of blood. Cycle eight continues to be pushed back, but I will almost surely get the chemo this Tuesday.

They went ahead and did a full set of CT scans. From what I was able to glean from talking with a semi-random doctor in the hospital, they don't look very good: lots of stuff growing, some stuff stable. I will get a copy of the reports myself on Monday and go over them in more detail with my regular doctor in Philadelphia on Tuesday. They appear to be slightly worse than what I expected, which is not good news.

I will probably be 'moving' back to Nashville this coming Thursday. The main reason for this is that I'm now experiencing steady pain from the tumor in my right groin. In the past, I've tried to stay off the pain killers as much as possible, but now it looks like I have no option. It will be interesting to hear what my doctor has to say about the scans, the pain, what comes next, etc. I'm also looking forward to seeing my Vanderbilt doctor again. Will be rejoining Netflix soon...

Monday, March 08, 2004

a picture

There is a moment of anxious expectation that I'm sure we've all experienced, though the level of anxiety varies greatly among individuals. That is when, after having had your mug shot taken at the driver's license office and after having spent several awkward minutes waiting for the license to be processed, the clerk announces your name and it is time for you to claim your new 'official' identity.

There is a moment in The Picture of Dorian Gray by Oscar Wilde (a proper write-up is coming... maybe) when young Dorian, an aristocrat of dazzling beauty, must see his just-completed portrait for the first time. Dorian, it is safe to say, suffered not a whiff of anxiety before the 'unveiling'--his painter-friend had been embarrassing him with compliments throughout the sitting; with a painter of such talent, how could it not be equally flattering?--but he was completely unprepared for what he saw.

As I waited for my new license, I expected the worst. The very fact that I was there, that I needed a new license at the precise moment when I could not have looked worse, was the culmination of a small, private farce. You see, three weeks ago, when I went in to have the tumor in my neck ablated, Barnes-Jewish Hospital managed to lose my belongings: a coat, a copy of the New Yorker, a tee-shirt, glasses, and my Tennessee drivers license. Today, in the driver's license office, the tumor loomed, ominous as ever, two band-aids separating the outside world from the by-any-measure grotesque neck-wound underneath. Outside light glared off the whiteness of my head. My glasses were noticeably absent--I believe they had added a fashionable sophistication to my otherwise bare head. At least they were something. At least they muted the effect of the missing eyebrows.

In the novel, Dorian is astounded by his own beauty. 'Is this really how I look? I had no idea.', he mutters. The scales fall from his ideas, his naivete is destroyed. Under the influence of a new world-wise (and world-weary) friend, he becomes sad. 'How long can such beauty last? How tragic that the beauty of this worthless combination of canvas and paint will last so long while the beauty that really matters to me, my intrinsic beauty, is as fleeting as a flower's bloom.' (paraphrasing)

I was not prepared for what I saw. What I saw was a portrait of my own corpse. It seemed like it was taken in some other universe, a universe where events had transpired slightly differently: I was young, healthy, cancer-free, but still, something terrible had happened. How did this man die? Most likely drowning, judging by the pallor of the skin and the bloating of the neck. He must have suffered some accident--maybe his car was forced into the river by a drunk driver? Perhaps suicide: the love of his life had had enough of him, and this pathetic, bookish bastard couldn't take it: he jumped from a bridge and wasn't discovered until the next day. But in this universe, somehow, I am still alive. And yet the two pictures match: my real image, the image that will be checked by innumerable low-wage employees for the indefinite future, and the alternate image, how I imagine I would look were I dead and decaying on a medical examiner's table, somehow correspond. Dorian's portrait perfectly captures his life to that date: pure, innocently divine beauty. This picture seems to capture my last few years. As I once remarked to a friend, my body has been a battleground on which the best of medical science has fought, and continues to fight, an inconclusive battle against one of the worst modern maladies. Like a battlefield, I look devastated.

You just gotta indulge me with this post. I've been feeling miserable the past few days. During this time I read The Picture of Dorian Gray. It left a big impact. Then, today I had the worst picture of my life taken; it left a big impact as well. Take these two, add the misery, and presto, you get posts like this. I'm feeling a little better now, but man would I prefer to be unconscious. The picture made clear to me what I already knew: 'You're dying, man. You may live yet, but right now, you're dying -- and there's no getting around that fact. Your independent life in St. Louis must end soon: you don't have the energy to properly take care of yourself anymore--you need to be eating better!--much less do anything with school besides grade the occasional intro problem set.'

When you're feeling this bad, it doesn't matter where you are, you just need to do all you can to keep the organism going. I'll get the chemo this week, see how I feel after that, complete my TA responsibilities (I did most of my share of the grading during the first half of the semester), and--unless I rally in a big way--head back home to Nashville.

oh so close...

Platelets fine at 138,000. Neutrophils? 'Ugh' at 1300. I need 1500 for chemo. I'll try again on Wednesday.

Thursday, March 04, 2004

not today either

Platelets: low but improving at 81,000. Neutrophils fine at 2,000. I'll go in again Monday morning.

Wednesday, March 03, 2004

life in a red state v

This post is related to the first 'life in a red state' post (and third ever post on 'Cancer Blog') way, way, way back, eons ago, on June 18, 2003, and also the 'life in a red state II' post on July 3, 2003. More license plate madness from Tennessee:
Thou shalt have another license plate to choose from — at least, if June Griffin gets her way.

Griffin, of Dayton, Tenn., has been crisscrossing the state for the past six years, urging county commissions to support the Ten Commandments. She's now going to head up an effort to create a specialty license plate proclaiming ''Tennessee for the Ten Commandments.''

''I'd like to get it done immediately, if not sooner,'' Griffin said. ''The Lord has sent me to do it, and I don't want to make any money off it. I'm doing it for the pure love of God and country.''

Her plans come at a time when the Ten Commandments' place in government is a subject of national debate — lawsuits are still pending about whether the Commandments can be displayed in the Rutherford and Monroe county courthouses. Likewise, the role of the state in issuing specialty license plates for political causes or groups — such as ''Choose Life'' or the Sons of Confederate Veterans — is also under fire and in the courts. [...]
Sheesh, just get a bumpersticker already.

Monday, March 01, 2004

not today

Neutrophils? Good! (1,700) Platelets? Bad. (54,000). Overall the counts were a little better than what I expected: last Thursday they were at 1,000 and 30,000 respectively. Today, I was supposed to travel to Philadelphia, and, tomorrow, I was supposed to get chemo and start cycle eight. But my blood's had a rough go of it this cycle. It could certainly use a few extra days to recover. I'll try again on Thursday.


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