Early yesterday evening I went over to Sharp Memorial Outpatient Pavilion for a scheduled MRI (my first one ever) to confirm my oncological surgeon’s recent diagnosis of the lump in my chest as a lymphedema. By which, I’m assuming he means “mild case of…”, because after recently learning the difference between lymphedema and the more general edema (the latter was what I thought my original surgeon had warned me about after my surgery to remove lymph nodes), I did some research and found some really bad horror stories – with pictures. So it’s hard to put the words “lymphedema” and “good” in the same sentence; but if true, the lessor relief is that I will not need surgery. I was very concerned that the lump is either a metastasis of my original melanoma or a case of male breast cancer, since the women in my family seem to be pretty good at getting it. So lymphedema, especially since it’s already getting smaller, is acceptable, I guess.
Earlier this week I was trying to encourage someone to not be afraid of taking a PET scan, which all the while seemed a little silly, because pretty much the hardest thing I found in the three I’ve taken was staying awake – I have a tendency to roll onto my side when I fall asleep. And snore. Really loud. I mean, REALLY, REALLY loud. But if Andrea had ever taken an MRI before her first PET scan, it would all make sense.
I had heard the your-body-in-a-tin-can-and-somebody-banging-on-the-outside-with-a-big-stick simile so many times, it was all I was expecting, and it didn’t sound too bad. I don’t consider myself to be claustrophobic, and we have a two-year-old at home, so someone always seems to be a) banging on something with a stick, or b) yelling about it. I figured I would still have to worry about falling asleep.
Looking back now, it wasn’t really all that bad an experience; but it was unpleasant, and unpleasant in ways that I wasn’t prepared for. When I showed up, the tech, as usual, got this worried look and started asking questions about my height and weight. I’m used to that, for these imaging techs always seem to be going by the conservative guidelines published by their equipment’s manufacturers, who don’t want the liability, and who either don’t know or don’t care how much more an enthusiastic and enterprising person can stuff into an orifice. But in my particular case, “stuffing” is an apt description of how we got my 195 cm (6′ 5″), 122 kg (270 lb.) frame into the desired area.
First, I had to get an IV set up. When I asked them to use the tourniquet as briefly as possible because of my lymph node removal, they decided that they needed to consult with somebody for instructions. While they were on the phone, I tried using my thumb to press deep between my biceps and triceps muscles to try to squeeze off the brachial artery, and flexed my arm muscles to try to get my veins to pop out a bit. I wanted to make the veins in the cleft of my elbow more prominent so that they wouldn’t have to use the tourniquet. Lymph has a much smaller, distributed circulatory system, and I figured that if I could directly manipulate my blood vessels, I might have found a way to get blood drawn (I seem to be getting blood drawn on a regular basis nowadays) while reducing the risk of lymphedema. While I was thinking this out, I realized that I was attempting to shut off the blood supply while looking for an effect that was caused by reducing the blood return. See? I’m not afraid to expose my ignorance to my readers! Somehow, probably just through the muscle clenching, I got a vein to stick out and I went ahead and got poked sans tourniquet. While I was being hooked up, I inquired as to what was being pumped into me, and was told that is was a contrast agent containing gadolinium, which is used because it is one of the few elements other than iron that is magnetic.
Next, I had to get into position on the bed of the MRI scanner. Here’s a small picture of the machine – I have so far tracked it down to one made by Phillips, of the Achieva line – when I learn more, I’ll post it.)
The bed was fitted with a raised platform with apertures for breasts – up to rather large breasts, as I can see from the sample images at the Phillips site – but that didn’t help me and probably took away room inside the scanner that I later would have preferred to have had. I lay on my stomach with my arms extended ahead of me, and my head propped up on pillows and turned to one side, with my face resting against my right arm. It seemed pretty comfy, and there wasn’t any part of me to hang up the IV tube, and they proceed to strap me in, securing some sort of framework on my back. I tried the headphones – they were offering music – but it was either have my face stuffed into a pillow or the earpiece jammed into the side of my head, so I opted for earplugs instead. Then we tried sliding the bed into the bowels of the machine. Right away, it was clear that it wasn’t going to work. There was barely enough room for my shoulders, let alone the framework on my back, so they pulled me back out, removed the framework and slid it under me, and tried again.
At first I thought there was plenty of room, but the hole apparently had two stages, and as I was carried further inwards, my normal chest size of about 142 cm (56 inches) felt like it was being reduced a good couple of inches. My guttural and vocal reaction (!) caused the movement to halt, and there was more consternation. The tech asked me whether I could breathe, and, although I couldn’t expand my chest normally, I thought I could get enough air into my lungs by exaggerating the action of my diaphragm. (As I am analyzing the experience as I write, it occurs to me that this means that my chest is still bigger than my belly – so that post-Army beer gut I’ve developed could be worse!) By this point I was starting to realize that thirty minutes was going to seem like a really long time, but what choice did I have? I told them I was going to be ok. My face was pressed hard against the inside and against my arm, which was also barely fitting into the tube, and I opened my eyes, reconsidered, then tried again a few times. Although I saw material for a possibly interesting introspection about the true meaning of claustrophobia, it just didn’t seem like the right time. I kept my eyes shut the rest of the time.
So I was prone, physically compressed, unable to move, having to breathe deliberately, and aware that I would not only have to try not to fidget, but I was consciously suppressing a newly discovered (or acknowledged) fear of confined spaces. Not my definition of comfortable. And we hadn’t even started yet.
Posted by Greg as General Science, Melanoma, Posts About Me at 15:46 PST
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After six months of waiting for a Google Analytics account, I finally get one a week after signing up for Google AdSense. Draw your own conclusions.
It’s pretty complex – designed far more for marketing and sales analysis than for webmaster administration, but I’m still poking around in it. So far, I really like the spiffy Geo Map utility. Here’s a sample, showing visitors to my website in the last two weeks:
Posted by Greg as My Website at 05:29 PST
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I’m a technophile, so for me, taking a PET scan was an interesting exposure to a piece of highly sophisticated medical imaging equipment. I even had to be prompted to write about the experience from the perspective of a patient, not a huge construct of subatomic particles.
And, although I am familiar with that special fear felt by those recently diagnosed with cancer, it is apparently not on par with the terror that can be felt by people who are unfamiliar with and afraid of the testing equipment and procedures they must go through to be properly staged, so that the level and extent of their cancer can be determined, and thus their prospects for various unpleasant treatments and their chances for survival.
I get a bit of traffic coming through my site from people looking for information about PET scans, and I’m guessing that a significant portion of this traffic is from people who have been told that they need to undergo this procedure. Still, I wasn’t quite prepared when I got an email from someone who was afraid of going through the scan.
I tried to give what comfort I could, and we corresponded regularly over the last week or so, so I am very, very happy to report that her PET scan came back negative for metastasis. Another cancer survivor!
At my request, she wrote about her experience:
Thank you so much for the opportunity for letting me write this. I really enjoy helping others.
My name is Andrea and I would like you to know I just recently went through a PET scan. Praying helped me get through and keeping my eyes closed all the time. That might sound strange but true. It is similar to a CT scan, it really was fine. Take a cd that you like and you will do fine. I hope this helps whoever is going to have this scan. Just keep positive and pray.
I want to join Andrea and emphasize to anyone that is about to go through a PET scan – this is not a difficult experience to get through. It’s not noisy, and not particularly confining. You will go through a short tube, but the open ends are very close by. You will have to get an injection of a radioactive tracer – despite the clunky metal container that the tracer comes in, it’s going to feel just like a regular shot – no burning or anything. You will have to lie still for quite a while – I like Andrea’s suggestion to take some calming music. There’s really nothing to be afraid of except what the results might tell you – and the PET scan itself is just a tool to see what is already there. This sort of scan is one of the best ways to give your doctors the information they need to give you the best possible treatment for your disease, so you need to think of the PET scan as something that is helping you. And for those of you who get bad news, I urge you to read Stephen Jay Gould’s The Median Isn’t The Message – even the bleakest circumstances might have some hope.
Comments are welcome, and again I’ll invite anybody who wants to know more to contact me. (You can disregard the encryption stuff, nobody ever uses it.) I’d also be glad to pass on anything to Andrea.
Earlier today I scheduled my first MRI ever, to confirm my doctor’s diagnosis of the lump in my chest as lymphedema. Now an MRI, I’ve heard, is akin to being shoved head-first into a small metal barrel while someone is pounding away on the outside with a big stick. I’ll try to be a little less phlegmatic when describing it after Saturday.
Posted by Greg as Melanoma, Posts About Me at 12:13 PST
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I heard from my oncological surgeon on Monday. The report had come back from the biopsy of the lump in my chest (finally) and the results were – inconclusive. He told me my options were to attempt another biopsy with a larger needle, or to just go ahead with a surgical removal.
At first, I didn’t see the point in another biopsy. With my PET scan results having shown no hyperactivity, I thought that malignancy had been ruled out, so only the lump material was going to be be removed. They could test the lump itself to identify it. Not so, says he. Apparently, a PET scan is not ultimately authoritative. I should have known that – there always appear to be exceptions in medicine. There still was a chance it could be malignant, and that would require more radical removal, so if there turned out to be a problem, a second surgery would be required. (And it didn’t occur to me until now, but a second surgery would be complicated because the first might have disturbed malignant tissue, causing cells to start spreading to other parts of my body.) I scheduled an appointment for the next day to discuss it.
Later that evening, when I thought it out, it became clear to me that it was foolish not to undergo another biopsy first. Thinking as an engineer, who won’t want to eliminate a potential hazard of small probability but major consequence with a simple preliminary test? The cost of such testing to me was only a $25 copay and a brief period of pain, and (I can’t believe I haven’t blogged about this yet) I once walked a good five kilometers on a broken foot (third metatarsal, complete fracture) carrying a thirty kilo backpack (in the rain, in the wee hours.)
So I called the doctor’s office in the morning, told them I had decided on the biopsy, and made sure that they scheduled enough time to do it right away. After all, there was no need to have the discussion and then schedule another appointment with another $25 copay!
I went in with some trepidation, starting to get anxious again after being so relieved after the PET scan, and half expecting him to pull out some gag-shop syringe with a needle the size of a drinking straw. But he examined me first and then stopped. The lump had gotten significantly smaller. I hadn’t noticed, because I had stopped feeling it up every day after I got the PET scan results. It changed everything, he said. Now, it was clear to him that the lump was a lymphedema – a backup of lymph fluid, full of fats and complex proteins, caused by the removal of lymph nodes in my armpit, and it appeared to be going away by itself. He’s putting me in for an MRI to confirm the diagnosis, but he seemed very confident. So – no surgery for me!
Posted by Greg as General Science, Melanoma at 23:29 PST
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I have been bemoaning my luck with upgrading to FC5 and the problems with two different wireless cards. But there is progress to report – I have the rt2500 chipset one up now. Good thing, too, because I’m already getting visitors with the same problem.
After my adventure getting this card up and running, I have been regularly upgrading my kernels, and each time I have to re-make the drivers (and install the new linux-ntfs rpm.) It was getting to be a bit routine until I did the big upgrade to FC5, and I did everything the same and it just didn’t work. Here’s a sample of some of the error messages I got:
rt2500 device wlan0:0 does not seem to be present, delaying initialization.
Error inserting rt2500 (/lib/modules/2.6.16-1.2111_FC5/extra/rt2500.ko): Invalid argument
rt2500: falsely claims to have parameter ifname
I’m beginning to think that, the more I feel like I’m starting to get a handle on this Linux stuff, the more I learn that I am truly ignorant. I tried tackling this issue with just a little research and a heightened sense of experience, but in the end I turned to the serialmonkey forums, and I found the answer. Correction – I found the workaround. So if you missed it (thanks, TomG!):
had the same problem but finally got it to work w/ the rt2500-cvs-2006032123 CVS build. Here’s what I did:
1 untared the archive somewhere in my home directory.
2. changed to the “Module” directory.
3. ran “make” as normal user to build the module.
4. ran “make install” as root
5. ran “make install-fedora” as root
Afterwards I was able to configure the card using system->administration->network.
Now, apart from using the CVS tarball, this is exactly the same, simple procedure I’ve always been using except for step 4. Fedora users aren’t supposed to make install this build. In fact, part of my earlier troubles were because I was doing that. There’s two pages of discussion of what might have been causing the problem, but it’s typically forum-muddled, so it doesn’t help me. But the procedure worked. And furthermore, I picked up that they have made improvements to the generic rt2w00 that enables it to work with the SMP kernels – unless that’s the one that doesn’t have WEP.
Posted by Greg as Hardware & Drivers, Networking, OS at 07:35 PST
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I got my first email from someone who read about my cancer experience online and is going through the same thing. It started off with “i am really scared.”
I wrote back, and I hope I was able to give some comfort, and that I’ll hear from her again, but it’s such an awesome responsibility to be the one that someone in fear turns to, and I’m feeling very inadequate as a counselor. My blog is not really about my cancer experience, but it was, and still is, a big factor in my life, so it’s hard not to write about it on occasion. I do get some hits from people searching for the terms melanoma blog or pet scan, and I’ve been linked to from Tiffany’s Melanoma Foundation Blog (thankfully, they knew what they were doing, and linked to my melanoma category instead of the whole thing.)
But I’m such a dry, technical writer; not one who describes his emotions very well. What do you expect? I’m a geek. Whenever I am feeling very emotional and I sit down and write about it, it usually reads back like someone who’s had a couple or six drinks, and I get uncomfortable about posting it.
The thing that concerned me was that if this person turned to me, she must really be desperate, and although I’m glad to help, I feel like she needed more than I can give. So I did a little looking around myself for online support for the recently diagnosed, particularly those going through the torturous staging process, when you know you have cancer, but you don’t know how bad it is. I learned very quickly that you have to be very careful about your search terms – my first few tries landed me in blogs that were the preserved stories of people who had succumbed to their disease. Not what I was looking for at all. I’ll have to look further and put up some links, I think.
Does anyone know where I can get some advice or training on how to handle this better?
Posted by Greg as Melanoma, My Website, Posts About Me at 05:40 PST
2 Comments »
No, folks, I’m not dead.
I have been struggling at home, trying to get my second box connected to the wireless lan with Fedora Core 5, trying a lot of things without getting a repeat of the one time I got it all up and running. In a break from this, I used the yum upgrader to update all my packages on the FC4 box I normally use. However, this upgraded SeaMonkey, my browser, and I lost all the extensions that I have come to rely on so much. Rather than mess around retrieving and reinstalling all these, I decided to upgrade the FC4 to FC5. This turned out to be a little tricker that I thought it would be, because the FC5 installation dvd detected my multithreading processor and installed the smp kernel. Trouble is, the rt2500 drivers for my HWP54G wireless card don’t work with the smp kernel. Then I tried hand installing the single processor version from the dvd using rpm, but rpm kept detecting the upgraded FC4 kernel I had installed, and refused to replace it with an older version kernel. I finally went to the source and got the lastest single processor FC5 kernel and installed that. Now, although I can build the rt2500 drivers, I’m having trouble detecting the card.
So this is keeping me pretty busy, but I’m learning an awful lot about the Linux file system, sources and modules. I might even have to recompile my kernels to get things working. Fascinating stuff. But in the meantime, I’ve been posting on the technical forums and neglecting my blog.
So sorry, Mum (my most regular visitor.) The baby is potty training, and being rather cheerful about it. Chelsea’s been getting excited about learning rifles next year in Color Guard. I have entirely too much work to do, and we’re still looking to hire new engineers. I recently reread Cryptonomicon, and I’m taking another crack at getting through The Baroque Cycle.
And I’m getting a very regular repeat visitor from Milton Keynes in the UK (or so my geolocators tell me.) Drop me a note and say hi!
Posted by Greg as Family & Friends, Hardware & Drivers, Networking, OS at 23:14 PST
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For those who don’t get the point of why I’m concerned about computer privacy and security, and am so quick to look for non-Microsoft alternatives, especially open-source operating systems and software, Bruce Schneier has written a brief essay that beautifully summarizes the dangerous trends:
When technology serves its owners, it is liberating. When it is designed to serve others, over the owner’s objection, it is oppressive. There’s a battle raging on your computer right now — one that pits you against worms and viruses, Trojans, spyware, automatic update features and digital rights management technologies. It’s the battle to determine who owns your computer.
You own your computer, of course. You bought it. You paid for it. But how much control do you really have over what happens on your machine? Technically you might have bought the hardware and software, but you have less control over what it’s doing behind the scenes.
Using the hacker sense of the term, your computer is “owned” by other people.
It used to be that only malicious hackers were trying to own your computers. Whether through worms, viruses, Trojans or other means, they would try to install some kind of remote-control program onto your system. Then they’d use your computers to sniff passwords, make fraudulent bank transactions, send spam, initiate phishing attacks and so on. Estimates are that somewhere between hundreds of thousands and millions of computers are members of remotely controlled “bot” networks. Owned.
Now, things are not so simple. There are all sorts of interests vying for control of your computer. There are media companies that want to control what you can do with the music and videos they sell you. There are companies that use software as a conduit to collect marketing information, deliver advertising or do whatever it is their real owners require. And there are software companies that are trying to make money by pleasing not only their customers, but other companies they ally themselves with. All these companies want to own your computer.
In the essay, he lists several specific ways some big companies are trying to own your computer. He mentions Sony, Microsoft and Google, but there are are lot more out there that are just as interested. The teenage wunderkind hacker, while still a threat, is chump change compared to the forces that want to control what you do and how you do it on your computer. Bruce concludes:
Just because computers were a liberating force in the past doesn’t mean they will be in the future. There is enormous political and economic power behind the idea that you shouldn’t truly own your computer or your software, despite having paid for it.
And it’s not just the software on your computer – it’s the connection to it. Yesterday I called and emailed my congressman’s office to urge him to vote against the COPE Act, which moved out of committee last week. Telecommunications companies want to control your access to the Internet, and want to profit from selling preferential treatment to the highest bidder, effectively turning over control of Internet content over to corporations. I don’t know how that can’t scary the willies out of anyone who likes being able to hear all sides of an argument.
Posted by Greg as Politics, Society, Software at 18:39 PST
1 Comment »
I saw an interesting item on Slashdot – someone is offering an IE-specific ad that only shows when your site visitor is using Internet Explorer, offers a link to download Firefox, and pays the site owner a bounty. Check out Explorer Destroyer. It comes in different levels, from gentle nag to barring IE users.
How much do I like Internet Explorer? Not very much, and I get really peeved when a site I want to go to demands it – like sending html email through my site’s webmail server. But I have gotten used to this occasional obstacle, whereas the general public, most of whom use IE simply because it comes with Windows, is not. Is it fair to penalize IE users? Probably. Is it nice to treat my site visitors that way? Probably not. Does exposing someone to the features of Firefox justify the treatment? That’s the tough one.
Now I don’t actually use Firefox – I use either the Mozilla Suite or it’s supposed successor, Seamonkey, but it’s all from the Mozilla Foundation. There are some differences between the versions in functionality and the availability of themes and extensions, but they are minor in comparison to the fact that they’re not IE.
In a quick, lunchtime post, I have neither the interest nor the time to get into a debate about the relative merits of Internet Explorer vs. Mozilla/Firefox, but the off-the-cuff reasons for switching or thus:
- Mozilla/Firefox is probably more secure. (May I point out again that I am not interested in getting into a debate about this? US-CERT has recommended using an alternate browser.)
- Mozilla/Firefox has better features. A matter of opinion.
- Mozilla/Firefox is more customizable. Through extensions, I can control how my browser works. There’s lots of cool features out there, but I try to keep the ones I use to a minimum because it can be a pain to manage, with all the different computers and installations I use, but to me, it’s definitely worth it.
- Mozilla/Firefox is not Microsoft. I think that’s a valid point, just because competition is healthy and good, and makes MS more responsive to its users. Would Internet Explorer 7.0 include tabbed browsing if Firefox didn’t use it? I’m betting not. Does it need it? Again, opinion. I’m hooked – if you don’t like it, you can turn it off.
I am strongly considering adding this to my website. According to one visitor tracker I use, about 50% of the not-me, not-a-bot visitors used IE, but it’s a small sample size. My logs include me and all bots, so it’s hard to interpret the report of 26% of page views (not visitors) using IE 6. I doubt I would use anything other than the gentle nag, but the site suggests trying the lookout version for 24 hours. I just wish I could change the listed reason for recommending Firefox in the Level 2 version – “not compatible with this site” seems disingenuous. “I care about my visitors enough…” would also be disingenuous if I were taking a bounty.
Expect a self-debate posting soon about commercializing my site.
Posted by Greg as My Website, Software at 11:55 PST
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On Friday, 28 April 2006, I got up at 2:30 am Central Daylight Time, packed, checked out of the hotel at 3:30, and Nelson and I drove to the airport in Minot, North Dakota, where we caught a flight back to San Diego on Northwest Airlines, and I was jazzed because I landed window emergency exit row seats on both legs. We had an almost three-hour layover in Minneapolis-St. Paul, and got into San Diego around 11:00 am Pacific. I went to the office, got caught up in various items, and got home about 2:00 pm, and was kept busy with stuff that had gone on while I was away and playing with the baby until I dropped dead asleep around 11:00 pm.
I never logged into my website all day, and didn’t see the marked-up calendar over my desk, so I completely forgot it was the one-year anniversary of my first blog post. So, happy birthday, me! I forget my own birthday, too.
Posted by Greg as My Website at 12:17 PST
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