It's Like the Eternal Flu

What would you do if you had a neverending flu? Not the killed a million people flu, but your basic low level stomach flu. 

The kind of thing where you always feel about 80% of normal? Where you start to staple subwoofer cable to the baseboards and decide, since you're down there anyway, you may as well lie down and take a nap?

Where, though you aren't particularly opposed to food, eating generally seems like too much work? Where, when you do eat, a half an hour later you're spending twenty horrific minutes in the bathroom? Where you've got a constant weird taste in your mouth, and certain foods that you used to enjoy now just taste off?

Where more days than not you've got a low level headache that won't go away?

Where your nose constantly runs?

Where nothing you do seems to make any difference, and it seems there's nothing you can do to make yourself feel any better?

What would you do? 

Yeah, I don't know what to do either. 

Temple Grandin's Cows

I saw part of a movie once about Temple Grandin. Among other things, she's apparently a woman who likes cows. A fair bit of the movie was focused on her efforts to make a cow's last few minutes on earth better. She watched cows panic as they were routed into the chutes leading to the slaughter house, so she designed a better system. Built with curves and other features that keep the cow from becoming aware that anything untoward is happening up the path, cows routed through her system walk calmly -- dare I say enthusiastically? -- down the path to their demise.

I'm starting to feel like one of Grandin's cows. 

The cancer treatment is certainly feeling that way. The providers are all calm and reassuring, offering up their recommendations in the blandest terms possible, and so you start down the path that they recommend. As the little warning signs go up, they keep offering new drugs and adjustments to keep you on the path. Eventually, you wind up barely able to walk or stand, sleeping as much of your day away as you possibly can, and with every trip to the bathroom turning into something of a horror story. I have to say, a bolt to the head might be a relief.

But it's not just the cancer. In some ways, life, too, seems like a bit of a cow chute. I mean, you start out with a pretty wide range of options, but each choice you make narrows the range for subsequent choices, often without your even noticing, and then eventually you find yourself sitting alone at midnight in your 700 sq ft condo wondering what the hell happened -- or, to borrow a phrase from David Byrne, How did I get here? 

However it happened, unfortunately, much like for the cows in the chute, it's way too late to turn back. All you can do is keep moving forward until the hammer eventually drops. 

And, sure, that's sort of a depressing outlook, and I have cancer, so maybe I'm just unusually depressed. But I don't think so. If you were to look at the advertising for suicide prevention hotlines and whatnot you'd likely guess that teenagers are the age group most prone to suicide. But according to the CDC, the age group most prone to suicide is that of people 45 to 64. (Teens are actually the second lowest after children under 14.)

Based on this statistic, it seems reasonable to argue that there are more than a few middle aged folks out there who don't have cancer but nonetheless feel like cows in a chute. 

It's almost enough to make one a vegetarian. 

The Essential Cleaning Supply for the Colon Cancer Patient

I suggest buying in bulk. You're gonna wanna stock up...

Voicemail

My cellphone rang today while I was in a meeting so I sent it to voicemail. A few hours later I retrieved the message: "Hello. This is UW Physicians. Please give us a call back at 1-800-<some number>. Thank you."

Since I had a few moments, I called them back. And after a few rounds of the world's worst hold music, a person came online: 

UW: Thank you for calling UW Physicians. How may I help you?
Me: I got a voice message telling me to call. 
UW: What number did we call?
Me: 206-<my phone number>.
UW: And who am I speaking to?
Me: <my name>
UW: And to verify, could you please give me your address and date of birth?
Me: <address>, <birth date>
UW: Thank you. We called you because we see you have a balance on your account. Would you like to pay that now?
Me: ?????????...  Uh, sure. I guess. 
UW: Great. I can take your credit card number as soon as you're ready...

When I got home I looked at my stack of bills. The only thing I had from UW Physicians came in early April. So we're talking less than forty-five days and they're already treating it as a collection? Really?

In my case it was no big deal, but what about the person for whom it is a big deal? Someone like, say, my Mum, who was incredibly sick, dying, increasingly frail, and stressed about the entire experience. How can calling that person forty-five days after you issue a bill to ask, "Do you want to pay your bill now?" be consistent with the health care mission of an organization called UW Physicians?

I'm not saying people shouldn't pay their bills, nor am I denying that I probably should've paid UW Physicians sooner.* But it just seems wrong for a health care organization that's dealing with some very sick people to take such an aggressive approach to collecting payment. 

If nothing else, I can tell you next time I won't be so quick to return their call. 


* Sib4 was helping me to sort out what was going on, so I stopped paying my medical bills while she was looking at the bills and EOBs.

It's Like I'm a Professional Blogger (But Not Really)

I've mentioned Kevin Drum's blog on MotherJones.com before, but a post he put up yesterday prompts me to mention him again. Here's a partial screen shot...

Now look at my post from a few weeks back...

I'm not sure exactly why, but it's somewhat gratifying to see a professional blogger swipe the same image from a Google image search as I did. 

But that's not the only thing Mr. Drum and I have in common. He and I share the pet peeve he's writing about in this post: politicians who only support government funded medical research when it relates to a disease or condition that affects them personally. 

Today's hypocritical & myopic moron du jour is Jeb Bush, who as governor of Florida vetoed a number of bills that would've supported Alzheimer's patients, but who now thinks that the federal government needs to increase funding for Alzheimer's research. What changed? The diagnosis of his mother-in-law with Alzheimer's.

I have no doubt that Alzheimer's sucks, but so does multiple sclerosis, lupus, AIDS, diabetes, ebola, asthma, ALS, Parkinson's, malaria, Huntington's, tuberculosis, cancer and a zillion other things that you can find in a medical dictionary. It would be nice if the people who were making the funding decisions for medical research could look past their own medical records (or those of their family members) in deciding which are the conditions that deserve government funding and which are those that don't.

I'm Starting to Understand Survivor's Remorse

If there's one thing you see as a cancer patient, it's lots of other cancer patients. Part of this is just the fact that if you hang out at a cancer treatment center, as cancer patients tend to do, you're going to see people with cancer. But part of it's also what I think of as the "Model X" effect: you never notice Model X of a car driving around the streets until the minute you buy one at which point all you see is the zillions of Model Xs on the road. Similarly, once you have cancer you start to notice the bald heads and head scarves, and pay a scary amount of attention when people mention this or that acquaintance who's been diagnosed. Suddenly, the world has cancer.

And once you start noticing your fellow members of the cancer club, it's hard not to start running through the comparisons. How much hair does this one have compared to me? How much energy does this one have compared to me? Who else is having this side effect, or that one? How bad do they claim it to be? 

I'm starting to realize that by most of these comparisons, I'm coming out the clear winner. The most frequent response I get from people who haven't seen me for awhile but know I have cancer is, "You look great!" And relatively speaking, I do. I don't look like I'm twenty, but I also don't particularly look like I have cancer. Similarly, while I feel like the cancer is significantly slowing me down, as one woman at work kindly put it, my 75% speed is faster than some people's 100%. And that's probably true, too. 

This weekend I was talking to my neighbor, and realized that he and I have gone through basically the same side effects at the same time, but while mine have registered about a two on a scale of one to ten, he's consistently been up there at ten. So, for example, while I get a superficial thrombowhatever and have to take a daily aspirin, he's got some deep seated clot that has him taking injections of blood thinners twice a day. 

Somehow in the cancer lottery, I seem to have obtained a winning ticket -- as much as having cancer can be considered "winning."

And I get that there's no such thing as "cancer," every person's disease is different, treatment choices are different, blah blah blah, but I have to admit I'm starting to feel a little guilty that my cancer hasn't had as big an impact on me as most every other cancer patient I meet's cancer has seem to have had on them.

Even if I justify it by arguing that it's not the cancer that does the damage, but the chemo, and since I opted for very little and very non-aggressive chemo I got a pass on the horrible side effects, that just brings up the question of why I'm still around. I mean, from the time my Mum let us know that her cancer had returned to the time she passed away was just five months. Even assuming she knew long before she told us, I can't imagine she knew for six months before she told us. And yet here I am eleven months in and I'm certainly not knocking on death's door. I sometimes wonder how many people are out there thinking, "Aren't you dead yet?" 

Nope, and seemingly nowhere close.

It's hardly satisfying, but sometimes all you can say is, life's not fair. And for once, the cards seem to have fallen my way.

Like I say, hardly satisfying -- and certainly not enough to stop the feelings of guilt. 

It's Memorial Day

Today is Memorial Day. Technically, we're supposed to honor the soldiers who have died serving the country, but since the American government has spent the last forty-odd years conducting a war on cancer and the last twenty-odd years militarizing most everything, I've decided my Memorial Day will be focused on the non-survivors of the war on cancer. 

So here's to all the participants in the war on cancer who didn't make it through, whatever their specific diagnosis, whatever their decisions on treatment, and whatever their approach to their final passing. Further, a special acknowledgement to all those who participated in clinical trials, thus helping to improve the treatment options available to those came after. 

May they all rest in peace. 

Some People Suck

Feeling at one with the universe? Got lots of faith in your fellow humans? Well here's an article that will change all that. 

Seems four cancer charities have been charged with fraud. But let's unpack that a little bit, cause it's the details that are so inspiring.

By "fraud" I mean the FTC has charged the charties with diverting $187 million raised from donors for the personal use of the charities' administrators. It seems 97 cents out of every dollar raised was used for something other than cancer treatment or research.

And what were those 97 centses used for you ask? Good question. The article states that funds were used to pay for "vehicles, personal consumer goods, college tuition, gym memberships, Jet Ski outings, dating website subscriptions, luxury cruises, and tickets to concerts and professional sporting events." Personally, I'm finding it hard to calculate how you could possibly spend $187 million on items on that list. It must've been quite the website. 

And what else did these four charities have in common? They were all run by members of the same family: James Reynolds Sr. ran the Cancer Fund of America and Cancer Support Services, his son ran the Breast Cancer Society, and his ex-wife the Children's Cancer Fund of America. The family that commits fraud together...

Oh, and what's the penalty for committing $187 million in fraud? You have to dissolve your charity and pay a $75,000 -- well, unless you don't have the ability to pay it back. In that case, the government sends you on your merry way.

Now doesn't all this make you proud to be human?

Results!

The results are in...

A minor decrease in the size of my tumors. Nothing hugely substantial, but since the drugs I'm on are intended for maintenance, rather than treatment, any shrinkage counts as a good thing.

The problem with my leg is a superficial thrombosomethingsomething -- in short, a blood clot. So I get to join the bazillions of people taking a daily dose of aspirin in the hopes of thinning my blood enough to make it go away. 

The doc sees no downside to taking a break from the regimen when I head to Spain with the niece. So I'll be pill free -- aspirin and anti-neuropathy anti-depressant excepted -- from June 5 through July 10. A month off! Yay!

The Xeloda's not supposed to cause all my other side effects, so the doc was confused by that. I've always been a late bloomer. 

The way the doc was talking, I seem to be on a good path to at least make the survival median. He seemed to be pretty confident that even if I went off treatment completely it would be quite a few months before things started changing. So it's probably not time to cash in that life insurance just yet. 

I think it's possible the SCCA's cafe has the best breakfast in Seattle. $5 gets you spinach, mushrooms, bacon, sausage and green onions scrambled with eggs, covered in cheese, and served with a side of very tasty red potatoes. I wish I'd discovered it months ago.

And now it's time for a nap...

I'm Not the Only One Who's Back

So is the insomnia.

I'm not exactly sure what to do at 12:41 am. It's not really a prime hour for television programming, I doubt my downstairs neighbor would appreciate my using the opportunity to make progress on my house projects, I don't have a current book to read and if I start surfing I fear for the state of my Visa bill. 

But now it's 12:52, so there's eleven minutes gone. 

Where's George Orwell When You Need Him?

It was probably 1984 when I read 1984, but it's definitely one of those books that sticks with you. And certainly in the years since 1984, there've been no shortage of articles and arguments claiming that current society was shaping up to be as Orwell described in his novel. 

Go ahead and add this one to the list.

There's a lot going on in Orwell's novel, but one of the primary topics is the manipulation, and abuse, of language. I was thinking about this today as I co-worker and I were walking past a billboard posted by the Fred Hutchinson Cancer Research Center. Their slogan? "Cures start here." And the Hutch isn't the only health care organization claiming the word cure for marketing purposes.

Which is all well and good, save for the fact that in adopting the word cure there's also an implicit -- and in some cases explicit -- effort to redefine the term. I'm no linguist, but a bit of web surfing was enough to show that the word cure has roots in the concept of "making whole." Originally, the word cure was applied to the patient, and to cure the patient was to make them whole again. Over time the word began to be applied to the disease -- e.g., to cure cancer -- but the underlying concept was still that of restoring the sick individual to health and making them whole.

A few things that to my mind are inconsistent with that definition of "cure": 1) basic research on how biological systems work or drugs behave; 2) treatments that require lifetime follow-ups and consistent monitoring; 3) procedures or processes that don't actually interact with a sick person; 4) treatments that require devices to be embedded inside you or for you to continue taking pills, capsules, injections, infusions or any other intervention to remain "cured"; 5) promises that something that's happening today will at some unspecified future date lead to a "cure."

I'm a big believer in basic research, clinical trials, and the rest. But those things are not "cures," and calling them cures does a disservice to everybody.

It's sort of like the word "literally." Literally used to be perfectly fine word with a perfectly fine meaning. Until everybody started using it to mean the exact opposite of its actual meaning. I mean, unless you've got a hot air balloon strapped to your back, if you say "I literally floated out of the room" you're not using the word correctly. But eventually the dictionary writers got tired of fighting off the "common" usage, and so literally was recently redefined to mean both "literally" and "the opposite of literally." And we've lost a perfectly good word.

I fear we're on the same track with "cure." Frankly, it seems that medicine has found it too hard in too many cases to make the patient whole -- to "cure" them -- and rather than dealing with why that may be, it seems we've decided instead to just redefine the term. 

Well, that and the fact that fundraising is a lot easier if you can tell your donors they're funding "cures" rather than "research."

But it's going to be a sad day for patients everywhere when that original definition of "cure" disappears completely. 

I Am Officially an Old Man

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...

I've Been Scanned (Again)

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...)

Diabetes Update

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. 

A Simple Test to Determine Whether or Not You Qualify as a Cancerous Do-It Yourselfer

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..." 

I'm Back

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. 

Diabetes 101: Fun with Medical Emergencies

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. 

I'm Rethinking My Position on Amputation

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. 

Fight Club

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...

Cratering

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. 

Revenge of the Diabetes

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. 

The Mystery Bruise Joins the Mystery Leg Pain

I posted previously about my latest side effect which has been excruciating leg pain. Oddly enough, while the pain has been hanging around for a couple of weeks now, over the weekend bruises started to form exactly where the pain is. I now have a bruise that runs from the middle of my foot up the inside of my leg to my calf. 

I can remember nothing that happened to me that would explain such a thing, but such is life. If I was paranoid, I might think it's blood poisoning, but the fact that my infected toe is on the opposite foot makes that pretty unlikely.

Have I mentioned recently that I'm getting really tired of side effects? 

I'm getting really tired of side effects. 

Okay, Cancer Is Hard to Ignore

After numerous weekends of laying on my couch not doing much, this weekend I decided I would ignore my cancer and do something pointlessly productive.* Specifically, I would replace the cheapo kitchen light that came with the condo with some high-tech, efficient, and modern recessed LEDs. 

It's a fairly simple job: figure out the number of lights needed and where to put them, drill holes in the ceiling, wire in the lights, then take out the old one and patch the hole. It's a small kitchen, so I figured it would take me a few hours tops (patching and painting not included).

Yeah, no.

Having been raised on watts and knowing jack-all about lumens, I guessed at five 4" lights. I'd already measured out where I wanted them (with the help of BIL4), which was an adventure in and of itself in that everywhere I wanted a light there seemed to be a joist getting in the way. But adjustments were made and a layout determined. 

I have now determined that it takes a period of adjustment and accommodation to the idea of drilling holes in the ceiling before one actually starts putting 4" holes in said ceiling. All told, it took me about four hours to drill the five holes. Of course I spent most of that time moving bits of tape around and contemplating the layout.** And since I had places to be and people to see, drilling the holes was the only thing I accomplished on Saturday.

The job for Sunday, then, was to install the new lights and take down the old one. And it was here that the cancer reminded me that it can't really be ignored. To illustrate, here's how the day went:

1. Climb the ladder into the ninety degree attic and position the first light.

2. Climb down and check the positioning.

3. Rest for thirty minutes.

4. Climb back into the attic, nail and wire in the light, and position the second light.

5. Climb down and check the positioning.

6. Rest for forty-five minutes.

7. Climb back into the attic, nail and wire in the light, and position the third light.

8. Climb down and check the positioning.

9. Rest for an hour.

10. Climb back into the attic, nail and wire in the light, and position the fourth light.

11. Climb down and check the positioning.

12. Rest for another hour, then go get an espresso shake, and then rest for another hour.

13. Climb back into the attic, nail and wire in the light, and position the fifth light.

14. Climb down and check the positioning.

15. Rest for another hour.

16. Climb back into the attic, nail and wire in the light, and wire it all to power.

17. Climb back down and test the lights.

18. Bother the downstairs neighbor for access to the basement so the breaker can be reset.

19. Test the lights again.

20. Climb back into the attic to figure out where the wiring went wrong. Correct the problem.

21. Climb back down.

22. Bother the neighbor for a second time to again reset the breaker.

23. Test the lights again. Success!

24. Install all the lamps. Identify one with a missing bracket.

25. Drive to Home Depot to exchange the bad lamp.

26. Install the last lamp.

27. Finished! Well...

...except for the fact that a) I still have to deal with patching the old hole, and b) given my lack of fluency with lumens, it appears I may have overdone it a bit with the lighting. There are probably operating rooms with less light than my kitchen. So in the hopes that when the packaging on the lamps says "dimmable" it's not lying, I think I'll need to swap out my on/off switch for a dimmable one sometime in the near future.

In any case, what should've been about a three hour job turned into something like twelve. It reminded me of the nurse at Group Health telling me about the guy who was going through chemo while still working every day as a roofer. I can't even begin to imagine. Props to the cancer patients everywhere who don't have the luxury of short-term disability or an office job.

In case anyone's interested, here are pictures of my kitchen ceiling on Friday, Saturday and Sunday...

* Pointless in the sense that I didn't actually need to replace my kitchen light, but productive in the sense that I'm glad I did.

** Naturally, I wound up drilling the holes where BIL4 and I had originally laid them out. 

Happy Sunday

As I was leaving work on Friday some of my co-workers wished me a happy mother's day. I reminded them that my Mum had passed away, I no longer had a mother-in-law, I'm not a mother myself, I'm not married to a mother, and so Mother's Day doesn't really resonate with me anymore.

It occurred to me that I'm probably not the only one being excluded.  So to all the people who, like me, no longer have mothers, aren't mothers, aren't partnered to mothers, and so are generally excluded from the entire phenomenon of Mother's Day, have a nice Sunday. 

But I'd suggest saving brunch for another day...

Well That Explains It

Now I understand both the $100 billion cancer drug price tag and the fact that every time I turn around I'm hearing about someone else being diagnosed with cancer. 

Numbers from the American Cancer Society website: Men have a 1 in 2 chance of developing cancer in their lifetimes, and a 1 in 4 chance of dying from it; women have a 1 in 3 chance of developing cancer, and a 1 in 5 chance in dying from it. 

Of course, I couldn't find the breakdown by age range. I suppose it's possible that all of this is really a function of age and longevity -- i.e., if they live long enough, eventually everyone gets cancer. 

But still. 1 in 2 or 3? Pretty crappy odds when you think about it. 

$100 Billion

One hundred billion dollars.

Dr. Evil's latest ransom demand? Nope.

Russell Wilson's new salary? Nope.

The estimated cost of the 2016 presidential campaign? Nope (well, maybe...)

One hundred billion dollars is how much was spent on cancer drugs in 2014. $100 billion! That's some serious money. And recall that there are only an estimated seven billion people alive on the planet at the moment. How can seven billion people, most of whom are not living in the countries where cutting edge cancer treatment is happening, generate $100 billion dollars is spending on cancer drugs?

Oh, and by 2018 that number is expected to jump to $147 billion.* 

It's no wonder oncologists -- at least the oncologists who aren't making boat loads of money from cancer drugs -- are starting to talk about "financial toxicity" as the latest side effect of cancer. 

All of which just goes to point out that a philosophy degree was a really poor choice. In retrospect, I'd definitely prefer to be on the drug manufacturer's side, rather than the patient's, of that $100 billion equation.


* The numbers come from a medscape article a friend forwarded me which I'd link to but requires a registration.

I'm Not Fishing

Under no circumstances should this post be understood as my fishing for a greeting card (the time for that has long since passed), but I thought these were pretty cool.

There was an article in Slate today about a graphic designer, Emily McDowell, who survived cancer as a young adult and is now designing the greeting cards she wished she'd received at the time. As she notes in the article, it doesn't really make sense to send a get well card to someone who might not, while sympathy cards make it seem like they're already dead. So she's created "empathy cards."

They're all great, but at the moment these are my two favorites:

And since more and more people seem to be coming down with cancer,* I thought it would be good to pass this along.

You can read the Slate article here.

And you can find McDowell's entire collection of Empathy Cards here.

* I learned yesterday that another acquaintance I see at the conference I'm at spent the last year fighting cancer. 

How Cancer Treatment Is Like Graduate School

When I was in graduate school I took a class called Cultural Theory. As I recall, the reading assignment for the first week was something like 800 pages; and then the second week was 800 pages; and then the third. Long about the third week one of the students finally asked the professor question we’d all been thinking, “How do you expect us to read all this?”

His answer? “I don’t. But if you want to be academics you might as well get used to the fact that you’re going to be asked to do a lot more than you can actually do, and so figure out how to prioritize and make choices.”

For some reason this week’s new adventures in cancer treatment side effects reminded me of that. The new development this week is leg pain. And by leg pain, I mean it feels like someone is beating on my left leg, from knee to ankle, all night long with a stick. There’s no bruising, though a little bit of redness, but it hurts like hell if you touch it, hurts like hell when you put a sock on (or have a sock on), and generally just hurts like hell as a matter of course. 

Not my favorite of the side effects so far.

It’s starting to feel like cancer treatment is designed to give you side effects until you just can’t take anymore and give up; and the catalog of potential side effects is starting to seem less like potential side effects than all the things you’re eventually going to get, so you may as well just plan for it.

But I'm not a planner, and this is getting pretty old. 

I almost wish someone was coming into my bedroom at night and hitting me with a stick. At least then I could wear shin guards. I’m not sure what I’m supposed to do about the new mystery pain.