Tags: cancer



I woke up early to get myself and fanlain to our respective doctor's offices. fanlain went to get some oral surgery done, and I was going in for a CT scan. I dropped off fanlain and arrived at the clinic a bit before 8—they wanted to get some blood tests done to make sure my kidney function is good enough to deal with the IV iodine contrast. Well, turns out that they didn't have the order for it, and they still needed to get it from Indiana. I waited for about half an hour while they spent time tracking it down. I went upstairs and gave some blood, then went back downstairs to wait until the lab results.

A bit before 10, they called me in, told me my kidney function was good, and were about to start the IV. But they wanted to double-check: did I drink the barium suspension? Turns out, no; I didn't have to do it last time, and no one told me to do it this time. Well, they said, you have to go back out, drink the tasty "berry shake" (which I now think is better than the banana-rama), and come back in 90 minutes. This gave me enough time to drive fanlain home after her surgery and have a shower.

I finally got out of the CT scan that was scheduled for 9am at 12:15pm and rushed to our noon faculty meeting. I stopped back around 4pm to pick up the CD and any lab results that may have been ready. Turns out that LDH was done: this was my high tumor marker that, for whatever reason, has not been tested since last July. It looks like it's within the normal range. The radiologist report was not ready yet, but then I got home, I finally took a look at the CT scan.

Unofficial verdict: the tumor is still visible, but looks distinctly thinner. It looks like it's about 1.5cm x 1cm in cross-section (down from 2.4cm x 1.8cm in November). It's still about as long as before, but given it's elongated shape, it would make sense that it would lose volume in the cross-section before shrinking lengthwise.

So, even though some data is still outstanding, from what I can glean, things are progressing as they should be and there's no reason to think that I have any active cancer cells left. I still want to talk about surgery when I see the doctor on Monday, but now that I'm getting back into the swing of things, I'm less gung ho to go back into the hospital. I've been thinking this week about how I'd react if the CT scan turned out badly, and I had trouble picturing it, but I was pretty sure that this wasn't going to be a fun weekend. I guess I can put away that thought until my next scan now and focus on getting better again.

oncology update

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 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 individual75293 and 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.


When I was at the hospital, they would take my blood at least twice a day and have results back within a couple of hours. The dialysis clinic is a bit slower. They apparently do a full metabolic panel, which tests, among other things, kidney function, only once a month, and then it takes a couple of days for the results to be returned to them. They took my blood on Thursday, and still didn't have results on Saturday...

... but once they got the results, things sped up considerably. I got a call yesterday afternoon that I should go to Carle clinic for a blood test before dialysis this morning. Having done that, I got hooked up to the machine as usual and was waiting out my time (with an increasingly full bladder)1 when a phone call came in from the nephrologist saying that my blood test results came back, and I didn't have to come back for dialysis, and in fact they could let me go straight away.

I was, of course, very excited. I was pretty sure that I was not going to be among the 25% for whom the kidney function does not recover since I found out from my oncologist that my creatinine levels were dropping, but it felt great to be officially off. And now we can go to Florida for our vacation next week without worrying about driving an hour+ to the closest decent size city to get dialysis there.

As icing on the cake, they told me that my potassium levels were actually low and I should be less restrictive with my diet. So I had a burrito for lunch to celebrate! fanlain was in a meeting most of the day, but afterward we decided to celebrate by going to Ko Fusion. I had some sushi and fanlain had a nice pork chop; we also saved some room for dessert.

As one of the nurses said, it's one more step towards returning to a normal life. I found myself with a bunch of free time for Thursday and Friday, so I spent today filling it up with meetings I hadn't thought I'd have time for. Tomorrow I have an appointment for a hearing aid fitting. Once I get those... oh yeah, and once I'm declared in remission (fingers crossed), I should be able to put these last few months behind me.

1 On a couple of previous visits, I asked to go to the bathroom while on dialysis. The first time, they disconnected me and it was OK, just added a few minutes to the time I had to spend in the clinic. The second time, my blood pressure dropped low enough that I started feeling nauseous and my hands started shaking, I was quickly surrounded by all the nurses in the room, and I spent the rest of my time on dialysis inclined backwards so that blood would flow back towards my heart and brain. After that, I've learned to wait until the end.

CT scan

CT scan, nov 14th

I had my CT scan today. The radiologist report won't be available for a little while, but I was able to get the scan itself. It took me a while of panning around using a DICOM viewer, but I eventually found the tumor. It's bigger than I expected, actually: about 5.8cmx2.4cmx1.8cm (these are the longest measurements in each dimension; its volume is much smaller). But I think it started out much larger, something like 7cm x 5cm. Hopefully it's all dead tissue; last time I had a PET scan confirm if it is.

When I met with Dr. Williams in July, we discussed what to do in such a case. He said it's a tough decision. Normally, if there is a large residual mass, they do a PET scan. If the PET scan shows up no sugar uptake activity, they typically leave it for observation; otherwise, they perform surgery to extract the remaining tumor tissue. The main reasoning behind this is that, in case of a negative PET scan, the odds of recurrence are pretty low, and the surgery is a major one, requiring 3-6 days of recovery in the hospital (and many days of recovery at home, I'm sure). On the other hand, I am (or rather would be, if a PET scan showed up as negative) in the exact same spot I was 8 months ago, when I had large residual masses that appeared not to have any live cancer in them. It's pretty likely that, had I gone for the surgery then, I would not have had the recurrence and would have avoided this whole second round of treatment. So the question is, do I do something unpleasant and slightly risky to hopefully avoid a low-probability event in the future, considering that the event is pretty scary? Or do I simply stick with observation and hope for the best? I have a feeling it will be a tough meeting in December.

ETA: fanlain points out that this post might be more scary than it was intended to be. I should mention that because my tumor was so large before the second round of chemo, this is the expected scan result for a successful treatment; it was always unlikely that my body would be able to totally absorb all of the dead tissue. So the CT scan is not an indication of anything bad, it just presents a dilemma.

Another factor that I thought of later that might influence this decision is how my insurance company feels about all this. I don't think this is a cheap surgery, so if they won't cover it, that might help make our decision.