All I've got to talk about these days seems to be my aches and pains. So what the heck? Let's embrace it and provide the current rundown...
The Things That Currently (or at Least Very Recently) Hurt
1. The bottoms of both feet. There's a weird buzzy sensation underneath all my toes and a strange cramping sensation along the bottoms of both feet, for which there is no position I can find that relieves the pain.
2. My right big toe. The Xeloda has caused my left big toe nail to get infected -- with pus and everything. You want pain? Try kicking a coffee table with your infected toe as I did last weekend trying to put on my shoe after Sib4's very sweet but overweight dog stepped on my bare toe. (The toe had a hard weekend.)
3. The top of my left foot. This is where the previously mentioned weird bruising begins. It makes wearing shoes a lovely sensation.
4. My left calf. The bruise continues. Tight socks are not so good, nor is the act of putting on socks generally. And sleeping on my side is dicey as my legs tend to interact and the right leg usually causes pain in the left leg.
5. My left calf, part 2. I currently have a cramp. I hope it will go away, but I've been hoping that since it woke my up from my evening nap three hours ago.
6. My spirit. I used to think an afternoon nap was a lovely thing. And it is -- when it's a luxury and not an obligation. It's incredibly demoralizing to not really be able to make it through a full day of work, much less to be unable to come home in the evening and accomplish anything. I'm so tired of being tired.
7. My lower back. The back pain's back, though I'm not sure if it's a consequence of the cancer or spending last weekend moving furniture around. Tomorrow's scan results should provide the answer -- and I got a massage prescription which someday I'll manage to fill, so that's good.
8. My stomach. Sadly, pretty much since my surgery the signal that nature is calling is more or less a sharp stabbing pain in my stomach.
9. Both hands. It's a cornucopia of hand pain. Nails that are broken and cut too short, joints with skin that's chapped and broken, and this weird sensation that feels like your hand is being flayed when you stretch your hand out to reach for something.
10. My right nostril. I inherited my mother's sinuses, which run constantly, but then you've got the Xeloda which dries out all your mucous membranes, so how I can have both a runny nose and dried out mucous membranes is beyond me, but it seems to be happening. And my poor right nostril as taken the brunt of the impact.
11. My right ear. Could be an ear infection, but this is relatively new. I'll ask the doctor about it tomorrow.
12. Both eyes. I mentioned this before, but the trend continues. By the end of the day, my eyes are in pretty bad shape and extended periods of focused usage just exacerbate the problem. I haven't touched the XBox in weeks (save to rewire it), and had a hard time getting through Mad Max: Fury Road last weekend. (This is not the season for me to have sensitive eyes.)
13. My head. It's not likely cancer-related, since I've had this problem for decades, but headaches are at least a weekly experience, and most nights I'm taking night time headache pills to prevent a headache from waking me up.
Next thing you know, I'll be eating dinner at 4:00 pm...
Today was my quarterly scan. I won't get the results until Thursday, but I did learn one interesting thing about scans today.
When the schedule the scan they tell you not to eat or drink anything for the eight hours preceding the scan. Normally I remember that sort of thing, but today I forgot. I was so focused on my blood sugar issues that I ate a container of yogurt before I left the house. Oops!
But when I told the nurse about my lapse of judgement she assured me it didn't matter. Apparently, the only reason they ask you not to eat is so that in the event you have a negative reaction to the contrast agent and you wind up vomiting there won't be anything in the vomit that you can choke on while you're lying on your back getting scanned.
It seems the CT scanner can look past the food (at least yogurt).
So now the question is, what will it find this time? I'll find out in about thirty-six hours.
(smaller tumors, smaller tumors, smaller tumors...)
Before I took my network offline I mentioned that my diabetes was raging and so I'd have to adjust my insulin dosage to get it back under reasonable control. It's been five days now, so I figured I should provide an update.
Things are getting better.
For the first time in weeks I've actually had blood sugar values back in the normal range. More important, the overnight values are staying fairly consistent which is very good. So yay!
The only downside is that the two types of insulin -- one which you can actually see the impact of and one which you can-t -- work in harmony, so when the long acting one starts failing the normal reaction is to increase the amount of the fast acting one. Over time, you develop a habit of overdosing on the fast acting as a way to try to get your levels down. But when you finally figure out that you need to raise the amount of long acting insulin you have to remember to adjust down the amount of fast acting insulin or the two combine to create hypoglycemia.
But it's hard to remember to make those adjustments, so I keep having those lows. Eventually I'll get the hang of it, but I wish I could get the hang of it faster.
Though low blood sugar does give you a great excuse to buy a package of Ho-Hos.
I have identified the definitive test for determining whether or not an individual qualifies as a do-it yourselfer with cancer. There's just one question:
When faced with the project of constructing a piece of flat pack furniture* that relies entirely on bolts to hold it together, which tool(s) will you need to use to build it:
A. The little wrench that came with the unit.
B. The screwdriver from your tool set.
C. The socket wrench from your tool set.
D. B & C
Have your answer? Okay, let's interpret the results:
If you chose A, you may be a DIYer, but you don't have cancer. The little wrench takes forever to use and if you had cancer you'd collapse with exhaustion long before you got the unit built.
If you chose B, you're either not a DIYer or you're MacGyver. To the best of my knowledge, there's no way you can employ a screwdriver to tighten a bolt, so, unless you're more creative than I, if you choose the screwdriver you're going to wind up with a pile of parts rather than a piece of furniture.
If you chose C, you're definitely a DIYer, but again, you don't have cancer because if you had cancer you'd find that you can't actually get the sockets out of the tool case. They're small, slippery, and tightly wedged into their little homes. Weak, neuropathetic fingers don't have the ability to evict them.
This leaves D. If you chose D, you're correct. While the sockets remained jammed in their homes, it is possible to pull the screwdriver, with it's large no slip handle, from its home in the case even with neuropathy in your fingers. Once you've got the screwdriver, you can use that to pry the sockets from the case, and then use the sockets to build the unit.
At some level, it seems cancer is all about adapting to the things you can no longer do.
* As a friend put it, "ah, Ikea..."
Apologies for the five day hiatus in posting.* My network has been down -- and by "down," I mean I disconnected all of the electronics in my living room.
Have you ever noticed that as TVs have gotten thinner, all the electronics that go with the TV have gotten bigger? When I bought my first stereo receiver some thirty years ago, it was 11-3/4" deep; just deep enough to sit comfortably on a twelve inch bookshelf. The stereo receiver I bought three years ago is eighteen inches deep. This of course means it doesn't fit on any furniture built more than few years ago.
This includes my Mum's antique record cabinet which passed to me. You would think that something built to hold a record player -- records being a foot across and needing at least a bit of space surrounding them -- would likely have enough space for a modern receiver. In my case, you'd be wrong. If you shut the doors on the cabinet, you basically would've smashed all the knobs on the front. Speaking of doors, solid wood doors don't really get along with infrared remotes. As a result, the corner of my living room was something of a disaster with a nest of wires surrounding a really inappropriate cabinet with doors that were constantly flopping around.
So when I found a twenty inch deep bookshelf at World Market I decided it was time for a change. So now I have a shelf unit that actually holds my equipment, my remote controls reliably work, and the nest of wires is now permanently sorted out and installed behind wall mounted conduit.
And it only took me five days to get it all installed (more on that later).
In any case, my network is now back online so I can once again update the world. I'm sure the world will be grateful.
* So much for my readership. I'm pretty sure five days of radio silence violates every rule of blogging.
An explanation of Type 1 diabetes so simplistic as to potentially be wrong, but necessary to understand the stories that follow:
Your pancreas makes insulin which controls the quantity of sugar in your blood. It's sort of like a thermostat: when you eat, or otherwise do things to raise your blood sugar level, the pancreas makes insulin which helps the cells process the sugars to bring the level back down; at the opposite end, when your blood sugar drops the pancreas stops making insulin so the sugar absorption stops and your blood sugar level rises. For most non-diabetics, blood sugar will range from about 80-120 depending on what they've eaten (and how long ago) and what they're doing.
Then there's the Type I diabetic -- e.g., me. My pancreas does not function at all. Instead, that thermostat function is managed by lots of blood sugar monitoring and taking injections of insulin: lantus which is a slow acting insulin that keeps the blood sugar down over a 24-36 hour period, and humalog which has about a 2-4 hour effectiveness curve. I'm constantly balancing my latest blood sugar levels against what I'm eating and how much insulin I need to take.
Sounds fun, huh?
Oh yeah, a Type 1 diabetic's blood sugar levels can range anywhere from nearly zero (in which case they're likely in a coma) to upwards of 800, in which case they'll likely wind up in a coma if it stays there for an extended length of time. High blood sugars are more of a chronic, long-term problem while low blood sugars come on fast and are generally much more emergent.
I've been a diabetic for, god help me, twenty-nine years. In that time I've had three low blood sugar events that would qualify as emergencies.
The first happened when the XS and I had bought our house in Seattle together and so were getting my house ready for sale. I'd spent the day doing some last minute repairs getting ready for the open house (i.e., finally installing the kitchen baseboards), and was meeting the XS and some friends for a movie. After the movie, I had to go back to the house to do one last thing before the open house the next day. Sometime during the movie my blood sugar dropped precipitously, but since I like movies and didn't want to miss anything, I ignored it. The problem with ignoring it is that eventually your blood sugar drops so low that your brain stops functioning and you no longer recognize that your blood sugar is low. So the movie ended, and I jumped in my truck to go back to the house to finish my project.
I somehow managed to get the final piece of trim in, but then I jumped in the truck and left to drive to the new house. That turned out to be something of a problem in that I had no idea where I was, where I was supposed to be going, or what path to take to get there. So basically I just drove randomly through the neighborhoods surrounding the house. After about three hours, the XS started wondering where I was so she called me on the cell phone. Apparently, it was pretty clear something was wrong, since I couldn't really engage in an actual conversation. So while she alternatively called me and the police, I kept happily driving in circles unaware that anything was amiss. Eventually she managed to connect me and the police outside a convenience store where they mandated that I check my blood sugar. As I recall, it was something like 24, so bought and drank a bunch of orange juice, waited around with the police until they were convinced I was functional, and then I drove home.
The good news is that I didn't kill anyone. The bad news is that I still have no idea what happened in The Lincoln Lawyer after about the first twenty minutes.
Which reminds me to share one more point about blood sugar. When your blood sugar drops low enough, your brain stops doing much more than trying to keep you alive. Thinking becomes secondary, and so is doing things like forming memories. If you sleep through a bout of low blood sugar, you're brain won't bother converting the day's events into long term memory, and so when you wake up you and an amnesiac will have a lot in common.
This has happened to me twice.
The first time was about five years after the pointless driving event, during the period when the XS was doing everything in her power to avoid me. It was a Saturday, and she'd woken up early to go hang out with her family. When I woke up, I woke up into one of those movies where the person is all by themselves wondering what's a dream and what's real. I wandered all over the house wondering why it was empty. At some point, I decided to call the XS who, having been through this before, called the EMTs.* The funniest thing about this one is that I actually argued with them about checking my blood sugar levels. I was convinced I was fine -- despite the fact that I was wandering around wondering what was real.
The second time happened when I was living alone. It was a workday and I woke up at about 11:00 to the sound of my alarm (which had been playing since 6:20) and my phone going nuts with people at work trying to figure out where I was. The thing I remember most about this is that I knew it had been low blood sugar, but I literally had no idea what day it was. But again, you suck down some orange juice and you're fine, even if you never get those memories of the prior day back (which is actually really weird).
I bring all this up, 'cause it is time to raise my insulin dosage. After the last of my emergent lows, I worked with my doctor to drop the dosage of my lantus. The fact that my blood sugar dropped over night was a good indication that I was taking way too much lantus. But nearly a month of blood sugar values in the four and five hundreds is telling me that I'm not taking enough.
So back up I go, with the hope that I don't go so far that I wind up waking up five hours late wondering what day it is.
As I think about, I'm actually not sure which is worse, cancer or diabetes. Not that it really matters. It's not like I'm getting rid of either of them anytime soon.
* Nothing like wandering around in your underwear when four EMTs and your in-laws show up at the house. And by the way, the EMTs that showed up at my house did not look like the two in the picture.
If given the option of having my legs removed below the knee, at this point that's a trade I might consider: no feet for no pain. At risk of repeating myself, my feet really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really, really hurt.
And how necessary can feet be? I mean, look at that snazzy cycling prosthetic that bicycle rider has. Imagine having a high-tech leg for all your various activities: the cycling leg, the walking leg, the running leg, the swimming leg (with fin!), the driving leg. You could wind up like Iron Man, Green Lantern or one of the numerous other superheroes that are always modifying their bodies (or body armor) to achieve miracles.
Okay, you're probably right. I'd probably wind up like this guy.
So I guess I'll keep the feet, and continue dealing with the pain.
Okay, the colon cancer support group isn't exactly like Fight Club, but they do share the first rule: you don't talk about the colon cancer support group.
This of course makes it a little hard to blog about my first group meeting which was tonight, so I will just say that it was a really terrific group of people, and it was oddly comforting to talk with folks who had been through pretty much exactly what I've gone through, though of course with personal variations in how their cancer was discovered, treatment plans and whatnot. It's also nice to have access to their experience -- treatments that have worked for neuropathy, dietary supplements that were found to be effective, and the like.
So it seems like a pretty good investment for one evening a month, at least for a little while.
But I probably won't blog about it much. After all, the first rule of colon cancer support group...
Not to put to fine a point on it, but as many of the folks who see me daily have noticed, I'm cratering. Between the raging diabetes and the accumulated effects of the Xeloda, getting through the day is getting harder and harder. When you can barely stand to put on socks because your feet hurt so bad, can't open a cardboard box because your fingertips no longer function, and walking a couple of blocks to the bus is enough to lay you out on the couch for a few hours, you've got issues.
Next week is a big week on the oncology front. I get scanned on Tuesday and meet with my oncologist on Thursday. My agenda for that conversation will be focused on a re-balancing of the quality:quantity ratio. It's starting to feel like we've moved way too far in the direction of quantity, and I've got to shift back.
The way I'm living currently is not how I want to be living. If something doesn't change quickly I fear my poor niece will be pushing me across Barcelona in a wheelchair. And as much as I'd like to take advantage of early boarding on the planes, riding in a wheelchair is not how I want to see Spain.
Upon being diagnosed with a condition that could kill me quickly (cancer), I decided -- with the concurrence of my doctors, I might add -- to focus on that particular problem and ignore my twenty-five year old condition that was trying to kill me slowly (type I diabetes).
It appears that after eleven months my diabetes has decided that it's tired of being ignored. Until now, while I've had the occasional bad blood sugar value -- an espresso shake is so worth it -- it's never been that bad, and some extra insulin generally brings things back to the normal range. But for the last three or so weeks, my blood sugars have been far (far, far, far) from normal and nothing I'm doing is bringing them back into the normal range.
I'll inject 20+ units of insulin, avoid eating or drinking anything, and two hours later my blood sugar is higher than it was when I started. And while exercise would normally be the other primary way to bring down my blood sugar values, the neuropathy in my feet has gotten so bad I can barely walk much less run or do anything else that could bring down my blood sugar values.
The biggest problem is that I have not a single clue what the cause of this is. Could be I've added some food with hidden sugar in it, or the neuropathy has slowed me down so badly that I'm not burning the sugars, or one of the various drugs I'm getting is impacting my blood sugar. Or something else I'm not even aware of.
I just know I gotta figure this out soon. The side effects of the cancer are bad enough without the added complication of blood sugar values that are consistently three, four or five times what they should be.
So much for ignoring the diabetes, and the next form I have to fill out that asks for my profession is going to get "medical patient" as this is turning into a career.
