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oncology update

  • Dec. 4th, 2008 at 10:49 PM
hat
I was supposed to see Dr. Williams today, but he suddenly became unavailable, so I was rescheduled to see his partner, Dr. Hahn. We ended up being a little late for the appointment because I discovered in the car that I had somehow lost the battery from my right hearing aid, so we made a stop at our favorite CVS in Indy to pick up a replacement. But once again, we didn't get in to see a doctor until about 45 minutes after the scheduled time anyway.

At first, a yet another doctor stopped by. I gave him a brief update on how things were going, he listened to my lungs and heart (I believe this is required during any doctor-patient contact), and went away. Both [info]fanlain and I decided that we didn't like him; he just had this air about him as if he wasn't sure what he was doing. A short while later, he returned with Dr. Hahn, who projected confidence and was much better about asking and answering questions. He examined me a bit more thoroughly, and then we discussed the way forward.

The main question was, and remain still, about whether I should have surgery to remove the remaining mass in my retroperitoneal lymph node. He pointed out that the mass had shrunk quite a lot since July, and that it was not unusual for some tissue to remain, but the question of what to do about it was still open. His plan of action is to a) get an updated measurement of my tumor markers (I got blood taken after the appointment), b) discuss my scan with other doctors, and c) perhaps do a PET scan to see if there's any activity. I'm supposed to see him again in January to make the final decision.

I also talked to him about my painkillers and whether I should be worried about addiction. I take fewer of them than before, but I still need about two pills (5 mg oxycodone each) a day, and when I don't take them, I end up in pain and unhappy. He said that as long as I'm taking the pills for pain, and not for the high you get from them, I should be OK, and wrote me a prescription for more. This is reassuring and should improve my quality-of-life a bit, since I had been waiting until I feel pretty miserable to take the next dose, but now I feel OK about not letting it get that far.

By the time we left, it was nearly 5 (Eastern), so we decided to stop for dinner at Blu Martini, where [info]individual75293 and [info]fanlain had had good sushi while I was in the hospital. We hit rush hour traffic and it took us an hour to get there, but we were still there in time for their half-price sushi, which was lucky, since the place is a bit pricey. The place had a nice lounge atmosphere with ambient electronic music (focusing mainly on base tones, so well-matched to my hearing!), blue lighting, and a projector showing movies (we caught the tail end of "Hancock" and the first half or so of "Elf"). The sushi was quite good, though the quality of the fish was better in Alabama. I packed away three rolls and still had room for a chocolate mousse for dessert.

It's a bit disappointing that the visit wasn't more productive and I'm left with the same uncertainty. I guess I'll call next week to get my tumor marker results; if they're back up from what they were, that would be scary, though, as the doctor explained, not yet a death sentence. For the last few weeks, I've been feeling like my life is returning back to normal, and I'm very ready to put all of this behind me, but this visit was a reminder that I'm not out of the woods yet. Realistically, even if all the tests come up perfect, it will still be a year or two before I can breathe that sigh of relief that the cancer is likely not coming back. I just have to try to remain optimistic until then.

Comments

[info]namazu wrote:
Dec. 5th, 2008 05:51 am (UTC)
I'm so glad you are thinking about things like the quality of fish and chocolate mousse again -- and eating them!
[info]enochsmiles wrote:
Dec. 5th, 2008 04:27 pm (UTC)
This is reassuring and should improve my quality-of-life a bit, since I had been waiting until I feel pretty miserable to take the next dose, but now I feel OK about not letting it get that far.

Developing some amount of a tolerance ("addiction" if you prefer) is unavoidable when taking opiates for more than a week or so. It is good to stretch the time between doses (though waiting until you feel miserable isn't really good -- just going the X number of hours that your doctor has recommended should be enough)

Probably the most important thing is to make sure that you have enough on hand to taper off well when you stop.
[info]owens888 wrote:
Dec. 5th, 2008 06:15 pm (UTC)
" He said that as long as I'm taking the pills for pain, and not for the high you get from them, I should be OK..." This is pretty much what they told us in class: patients who take opiates for pain (with no history of drug abuse) develop physical dependence but not addiction.
[info]sueg wrote:
Dec. 5th, 2008 06:26 pm (UTC)
I feel compelled to tell you that H. did develop a dependency on oxycodone when he was taking it for a kidney stone. He did not realize the stone had passed because he was still experiencing "pain" between doses. He did not experience a high; in fact, hated the feeling that the drugs gave him. There is history which I am sure affected his experience, but he was asking his doctors if he should be concerned and they all said no. In fact it was a huge concern. So I would not take one doctor's word for it. However, with no history of addiction you are probably ok. You certainly should not feel like you shouldn't be medicating your pain. But you are right to be cautious.
[info]hukuma wrote:
Dec. 6th, 2008 12:02 am (UTC)
Thanks; this is exactly the kind of thing I was wondering about. I'm pretty sure that the pain I feel in my feet is real, since it's fairly localized, and in a sense noticeable (but not bothersome) even with the painkillers, but I do also get a general discomfort if I wait too long between doses, and I suspect that it might be just a withdrawal symptom.

The doctor told me that he was expecting that I would likely be still in real need of painkillers this soon after the treatment. It's weird that "this soon" is a month and a half, but I guess it takes a while to recover from a determined assault on your body.
[info]greenexecutive wrote:
Dec. 5th, 2008 08:08 pm (UTC)
Up-drug
When they assign me narcotics (Vic, Codeine, whatever), I tend to only use half the 'script or less. I tend to like to have pain give me feedback on what's going on in there.

However, during my Mondo Back Explosion, I was really dysfunctional for several weeks. After a really horrific episode, I finally had a doctor explain to me that the drugs were to stop me from hurting and I was clearly hurting and why do you think we write these prescriptions? I started taking (nearly) the full dosage after a while and suddenly discovered I could code again, and that was good.

(Narcotic-fueled code is not the BEST code you can write, but that's why you do test-driven development---so no matter how crazy it is, you know it works.)

However, I've not done Oxy, nor as long as you have, so I'm no expert. But I am an expert in being too cautious about painkillers.
[info]owens888 wrote:
Dec. 5th, 2008 09:54 pm (UTC)
Re: Up-drug
I prefer not to take painkillers either, and the only time that I really needed the powerful stuff, I was driven to a shitty hospital full of addicts and not given any. But anyway, one of my professors said that during a long episode of pain, pain circuits in the spinal cord can (mal-)adapt to being in a "pain-promoting" state, but that this outcome can be prevented by judicious use of painkillers. The science behind this view isn't completely solid, but there's some evidence to suggest that it's true. It seems better to be safe than sorry.

Incidentally, what I've read in the news and hear from doctors is that pain is generally under-medicated, for fear of the DEA. Perhaps that's more true for people with chronic pain or who are at the end of life.
[info]hukuma wrote:
Dec. 6th, 2008 12:51 am (UTC)
Re: Up-drug
Normally I don't use very many of my prescribed painkillers either. In fact, I ran out of the ones they prescribed before I had a chance to see a doctor again, so I've been going through my stash of leftovers.

Both my sleep and concentration at work are quite a bit better with painkillers, so yeah, there is a reason they prescribe them.

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