Tags: health

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diet

I gained a few extra pounds in Germany, which pushed me to rethink my weight-loss strategy.  I finally decided to go back to the only thing that worked well before, which is going low-carb. I had been trying to reduce my carb intake since August, but I found that having flexibility in my diet plan actually made things more difficult.  Picking a rule and trying to stick with it reduces the amount of struggling with myself I do.

First couple of days last week I felt really miserable and cranky.  It took me until Tuesday night to realize that it was because I abruptly stopped eating sugar (at Dagstuhl I kept a daily regimen of cake and chocolate); as always, finding an underlying cause for my feelings made me feel much better.  My mood has stabilized, but towards the weekend, I entered a "hungry all the time phase."  Usually, it's OK, but, of course, if I have food around (esp. high-density stuff like meat and nuts), I tend to overeat.  Yesterday, I ordered in room service around 6pm, and then went out again for a burger at 10.  Today I had a huge lunch (I even exceeded the cafeteria coupon allowance they gave us), and a normal-sized dinner, but was feeling too hungry to work in the evening, so stopped by Safeway to pick up some snacks.  Ended up eating 4 (!) bananas and about 5oz of pistachios, and probably would eat more if I were staying up much longer.

I really do wish that there was an easier fix for the fat accumulation bug... spider88 , I'm looking at you!
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scan

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.
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acupuncture

I went for an acupuncture treatment yesterday, since I read that it might be an effective way to help recover from my neuropathy. (The chemo treatment damaged the nerves in my feet and arms, and as a result I have chronic pain and lack of feeling in my feet.) Everyone mentions how acupuncture doesn't really hurt, and it was true that the piercing of the skin felt like a painless prick (when I could feel it at all). However, my acupuncturist then would try to find a nerve, which makes sense since she was trying to treat my neuropathy. But she would try to use feedback from me to figure out when she'd reach the right place. From my perspective, I would feel nothing for a bit and then there would be a sharp shooting pain going through my arm or foot. Often times I would literally jump. It's possible that my neuropathy, or my painkillers, make it difficult for me to feel low-grade pain sensation and only alert me when the pain gets extreme. But it definitely wasn't the painless and sometimes euphoric experience that I was led to expect.

The good news is that my nerves seem to still be alive, even in my feet. Also, I confirmed that the soreness I feel in my wrists & arms is in fact nerve pain. But I'm really not sure if the treatment was a good idea. My wrists and arms have been hurting quite a bit more than they did before the treatment, especially around the time the painkillers run out. For my feet, the sensation did eventually become a pleasant one, but I'm not sure if there's any lasting benefit, and there's definitely some pain around some of the puncture points there, too. So even though I made an appointment for next week, I'm not sure I will return, especially if the pain persists for more than a couple of days.

At least the cost of the session should be tax-deductible. I noticed during my accounting that we will probably exceed the 7.5% of AGI floor for medical expenses this year. This motivated me to go and pay off the balance of my hearing aids—I had only paid for half of them when I bought them. The staff was a little confused as to why I wanted to give them money sooner than they required, but after I explained that I effectively get a 25% discount if I pay out the money now rather than next year, they were more than happy to accommodate me.
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king lazy bones

It occurred to me that I never posted about my experience with my hearing aids. When I first got them, it was both exciting and disappointing. I could certainly hear a bunch of new noises, and some conversations were definitely easier. The most dramatic effect was rustling of papers; it went from something I could not hear at all, to something that was easily audible clear across the room. I'd almost cringe at having to open an envelope. Hearing other people was also easier, but the effect was not quite as dramatic. I could hear fanlain sometimes, but a lot of the times she'd still be virtually incomprehensible. For people whom I could hear OK beforehand, I had to ask them to repeat themselves fewer times. But people whom I could not really hear largely stayed that way. The worst, other than fanlain, was my new postdoc, who has a combination of an Indian and British accent, and speaks softly on top of that.

After a week, the loud noises from papers and such stopped being so jarring. But I was still pretty frustrated at not being able to understand people; I'd have real trouble in meetings, especially if they included more than one person. Since that's a large part of what I do, I was pretty sad, and hoped that the hearing aids could be adjusted. Fortunately, it turns out they could—initially, they turn them down a bit to make the background sounds less disorienting to people who had not worn hearing aids before. And even though I had only had significant hearing loss for less than four months, it was definitely helpful for me. The audiologist adjusted them using this machine that actually measures the sound levels inside my ears, and afterward a lot of the harsh high-pitched sounds that became less noticeable over the first week and a half I was wearing the aids popped out again, though not quite as dramatically. I started to hear more noises, like our microwave timer and my feet shuffling. More importantly, speech recognition became much easier. It's still not perfect, but I can understand most people without much effort, and for the really quiet people, like fanlain, I still have a hope.

I find these days that if I increase the volume by 4–6 dB using my ($500!) remote, speech recognition becomes pretty good, but being in a moderately noisy environment gives me a headache. But I'm still adjusting; I think I'll learn to ignore the background sounds a bit more with time, and the plan for next Monday is to do another, fine-grained adjustment. I might try to bring fanlain with me as a test subject. (When I told this to my coworkers, they were impressed and explained that they weren't so sure that their spouses would ask the doctors to help hear them better; they postulated the opposite might be true.)

I'm still not sure if I want to try the higher-end model. It supposedly has somewhat better noise suppression, with a feature that clamps down on sudden loud noises, which could be pretty nice. It also has a neat directional control, where I can choose to focus on sounds to the left or right of me (or even behind), rather than the default front. This is intended to help when you're in the car, or walking along with someone. I'm also trying to decide if I should get an in-ear model rather than behind-the-ear one I'm wearing now. I don't mind the hearing aid hanging off my ear; the little piece that's inside the ear bothers me more (though I'm mostly used to it now). And it's hardly noticeable, from what I've heard from others; the transparent tube is hard to spot unless you're looking for it, and the piece behind the ear gets masqueraded very well by my glass rims (and eventually will be hidden by my hair). But it gets in the way when I take my glasses on and off (e.g., when I switch to my prescription sunglasses for driving). And it's uncomfortable to lay my head down on a pillow without removing the aid first. I'll have to discuss that on Monday.

One thing that I've realized from the hearing loss is just how much of spoken language you can infer from context. I discovered that I had the hardest time understanding people when they changed the subject, since it was much harder to predict what they were saying. Numbers were also difficult, and I would confuse "two" for "three" and "nine" for "one," since it's usually not obvious from context which was used. But trying to predict what was said and reparsing the audio stream based on that takes a lot of mental energy; I found that I was tired or not focusing my mind on what they were saying, I could hardly understand people at all.

On other neat thing about hearing aids is that you notice pretty quickly that your hearing is now controlled by a computer program, as it suddenly detects a situation change and adjusts the volume, or detects a speaker and isolates them so that they come through clearly. It's a little disorienting at first, but when it works well, it's actually pretty nice (and I can sometimes make adjustments with my remote control). I guess it's good practice for when more of my senses become bionic!
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endurance

I'd like to think that I'm ready to go back to work full time, but my body is telling me "not quite yet." I woke up a little before 7 today and worked pretty solidly until 6, but at the end was falling down tired. I had to drink a third cup of coffee to stay awake for my 4pm meeting, which I'm paying for now. And I think I'm going to have to take tomorrow morning off to recover my energy.

But it feels good to be at work and to be productive again. If I'm lucky, I'll be able to clear my list of overdue items by the end of the week! Of course, it will just fill up again when the next semester starts...
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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.
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vascular surgery

I had an appointment with a vascular surgeon yesterday morning to see about getting my dialysis catheter removed. I was really happy about the prospect, since the catheter gets in the way and frequently pulls on the stitch that's used to hold it in place, making the skin around there really sore. Plus, I couldn't really have a shower with the catheter in place. I could wash normally from the waist down and had to use a washcloth for the rest. (During our trip to Florida, I used some duct tape and sandwich bags while taking a shower, with limited success.)

I figured the appointment would be to discuss the plan for surgery to extract it, get my consent, that kind of thing. I arrived a bit late, but turns out it didn't matter, since the surgeon was running much later himself. I spent some time getting breakfast at the hospital cafeteria (a pretty poor choice, but they told me not to leave the hospital/clinic); by the time I got back, they led me straight in to see him. When we got in the room, he asked me to lie down on an exam table and take off my shirt... so that it doesn't get bloody. I blinked—was he going to cut out the catheter right there? He removed the bandage and said "let's see if I can pull this thing out." My eyes went wide as he went YANK! and said "it's done." I barely had time to say "ouch!"

After that, the nurse put some pressure on it for a few minutes, and then bandaged it up. My instructions were to check for bleeding a few times during the day, and to not lie down for the next 4 hours. But I could have a normal shower the next day! That was exciting, since I've had a catheter in that spot since mid-August.

I went back to work for a bit, then came back in the afternoon to meet with my nephrologist. He was a little disturbed, telling me that I looked tired, when I was supposed to be getting better. I suggested it was because of the long drive back from Florida (I still haven't recovered, I don't think). He ordered tests for my blood and urine to see how things were going. Impressively, he called me back personally in the evening and explained the results—usually, you just get a note in the mail a week later saying things were fine. Apparently, everything was fine: my creatinine was down to 1.9 (2.2 at last measurement), my hemoglobin stayed at around 11.5, despite not receiving any more Epogen, and the protein leakage into the urine was only slightly above the norm. He did mention that I need to be drinking more fluids. My plan was to bring my camelbak water bottle to work, though somehow it didn't happen today. But overall, good news.

I also stopped by to get a flu shot, being already at the clinic. I've never gotten one before, since I was never in a high-risk group. I'm not sure whether I'm in one now; I think my immune system is working fine again, though if I happen to need chemo again, it would obviously help not to be sick. But if I understand these things correctly, the flu shot has significant positive externalities, so I decided to do it. It was pretty painless, though they made me wait around for 10 minutes to see if I'd have an allergic reaction. (And the arm was a little sore today.)
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hearing aids, cont'd

While speech went through subtle changes, a lot of background noise went through more dramatic ones. I noticed that the chair had squeaky wheels, and that the audiologist's keyboard made clicking noises. I also heard very clearly the sounds when she opened up desk drawers and rustled papers. And when she dropped something on the table, I almost jumped. I can see why people like my dad might be tempted to leave them off a lot of the time, even though they work better if you leave them on for longer.

It will be interesting discovering what noises I have been missing. Some have been obvious: I don't hear beeps from things like the microwave very well now. And I realized this morning that I can barely hear our alarm clock, even when fanlain says it's blaring. (In retrospect, I realized that when I use the iPhone for an alarm, I hear the buzzing from the vibration, rather than the actual alarm.) But, like the paper rustling, I think most of the noises I can't hear now, I simply don't realize that they're gone.
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hearing aids

I went to an audiologist to try out hearing aids today. For during the visit, she gave me a pair to put on while we talked. It was weird; when she put them in and turned them on, I expected everything to get louder, but it didn't. Her voice stayed roughly the same volume, but was somehow a little bit clearer. Turns out that this is because the aid was "open fit": it lets exterior sounds pass through and in fact does not amplify anything below something like 1000 Hz, letting my own hearing do that. After that, she toyed a bit with them, fit them back in, and the left one started buzzing. She was able to fix that, but then it was still sounding staticky. She then told me that this is something that could be fixed with adjustments as well, but there wasn't as much point since I wasn't going to keep them.

We discussed my options. The basic question was how "active" a life I lead. I clearly fell into the "very active" category (remember, most people who get hearing aids are a bit older than I), which would indicate that I should go for the premium, top of the line hearing aids. But we discussed the differences between the high-end and mid-range aids and it wasn't clear that it would make a big difference. Since I get a 30-day trial period on the aids (required by state law!), the audiologist recommended that I try the mid-range ones, and if I'm a little disappointed in their performance, I can try the premium ones for another 30 days to decide if they're worth it.

The costs are a little daunting. The pair of mid-range hearing aids costs $4900. This is a little higher than the prices I had seen (e.g., from Hearing Planet, but the difference is exactly the amount that my insurance would cover, and I figure it's nice to have a local audiologist. The little remote that controls some of the functions is priced at a ridiculous $500. Hopefully I'll find I don't use it that much and return it, though I thought it might be nice to have it along for the trial. And the premium aids costs $1400 more. Plus there's a non-refundable $150 fitting fee.

But the prospect of not having hearing aids sounds worse, so I asked the audiologist to order a pair for me. They'll be ready for me right as I get back from Thanksgiving, so I'll report more then.
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freedom

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.