Sunday, August 31, 2014

Chemo Saturday (Er, Friday, Saturday, Sunday) Summary

Left work early on Friday and got home at about 3:30. With a few minor exceptions, between 3:30 on Friday to noon today (Sunday) I was either in bed or on the couch. It was just too much trouble to move. 

But it wasn't like I was totally non-productive. I answered the phone (Sib2) on Saturday morning, which required me to get up off the couch and walk the two steps to where the phone was sitting. (Full disclosure: I didn't actually make it to the phone in time so had to call back.) A few hours later I had to make the same trip a second time to respond to a text message (Sib4). And since I was more or less vertical and by that time hadn't eaten for close to 24 hours I decided to put on shoes and a sweatshirt so I could drive the two blocks to the store -- sorry everybody, but chemo totally trumps global warming -- and buy a package of pre-fab danish which was about the only thing I could contemplate trying to eat at the time. 

So a few relevant stats for the last 45 hours:
Time not spent sleeping or trying to sleep: best guess, 4-6 hours
Distance walked: probably less than 100 yards
Total caloric intake: 2 fried eggs and 4 cinnamon danish
Episodes of Top Gear watched: 4

I'm really starting to hate chemo Saturday (which is now clearly bleeding into Friday and Sunday). 

At least it's Labor Day so I've got half of Sunday and Monday to have a weekend, even if I'm not yet ready for an iced beverage or much in the way of food beyond my remaining danish. 

Thursday, August 28, 2014

Cycle 3, Day 2 Summary

And the word of the day is "neuropathy." 

While the nurses and oncologists have been asking about neuropathy pretty much since the chemo started, so far it hasn't been an effect of the infusions. Until today.

The drug sheet describes neuropathy as "numbness and tingling in the hands or feet that gets worse when exposed to the cold." I might modify this a bit: "numbness, tingling, irritation, stiffness, soreness, pain, sensitivity, aching, [etc.] in the hands or feet that gets worse when exposed to the cold, including but not limited to, sitting in the breeze from an overhead air conditioner vent, grabbing a container of orange juice from the refrigerator or holding the bottle of Diet Pepsi from a vending machine and which can be further exacerbated by such routine actions as typing on a keyboard." 

Not a fan of the neuropathy. 

But at least now I know that, in my case at least, it takes three cycles for the chemo to really start to suck. 

Wednesday, August 27, 2014

Chemotherapy, Cycle 3, Day 1 Summary

The theme of the day has been jaw pain. Every time I eat anything or drink anything, the first fifteen seconds are spent with horrible pain in the hinges of my jaw. The progression runs sort of like this:

1. Put a bite of food on the fork. 
2. Open your mouth and stick the food in.
3. Close your mouth and bite down on the food.
4. Close your eyes and wince when suddenly both sides of your jaw are awash in pain. For a few seconds, try not to move your jaw.
5. Slowly begin to move your jaw around trying to find a place for your jaw that isn't painful. (It won't work, but to borrow a theme from yesterday's hair post: hope springs eternal.)
6. Wait fifteen or twenty seconds for the pain to subside.
7. Eat the rest of the food.

1. Take a sip of liquid.
2. Swallow it.
3. Follow Steps 4 - 6 in the Eating process.
4. Finish the rest of your beverage.

No clue which of the drugs is causing this, or why, or, most important, what to do to make it stop. 

But in addition to the jaw pain, today's post-infusion experience has involved notably increased fatigue over the experience of Cycle 2, pretty much continual headache, and incredibly high blood sugar levels as a result of the anti-nausea steroids they give me prior to the infusion.

Based just on today, I'd say the long-promised cumulative effects of chemo are starting to kick in. We'll see if the trend continues through the rest of the week. 

I Should've Paid Better Attention in Chemistry

The oncologist I met with prior to today's infusion was kind enough to review all the labs they've been taking over the past weeks to try to educate me a bit on what was going on. I, of course, don't remember the details of what he said or even what tests we talked about, but I do at least have a better understanding at a higher level of what the oncologists are looking for. 

That said, two of the oncologist's comments did stick with me:

"This test is measuring the performance of your bone marrow and you can see here where it was working fine before we started attacking it." He did not, unfortunately, tell me how far from fine I had fallen.

"This test measures your white blood cell count [at least I think that's what it was], and you can see that it's been dropping precipitously over the past four tests. When the first number is a zero [current value is 1.7] we'll have to stop, or at least back off on, the chemo." If only I could remember which test he was talking about so I could monitor it myself on the GHC website. 

In that vein, it strikes me now that I probably should've used my phone to take a picture of the screen we were reviewing so I would know which of the numerous tests they're running I should be paying attention to.

Oh well. At least I now have a quantitative indication that the chemo is as least doing something to me, if not to the tumors in my liver. 

The Cycle 3 Chemotherapy Liveblog

Everyone ready for Cycle 3? 

Today's chemo companion is my co-worker (and happy hour connoisseur) N, who was kind enough to be a last minute substitution. The XS, who was going to join me, called last night to let me know she was sick and so in no condition to be spending the morning with a bunch of germ-sensitive cancer patients with depressed white blood cell counts. So thanks to N for stepping up on just a few hours notice. 

The key feature to today's cycle is, of course, the addition of Avastin (bevacizumab) to my infusion cocktail. Avastin is designed to prevent the blood vessels that feed the tumors from growing, which seems quite useful, but it comes with the scariest menu of side effects, most notably, incomplete wound healing, "holes in your intestine" (say what?!), kidney damage, blood clots, heart attack, and stroke. 

I'll admit it: the drug sheet on the Avastin is freaking me out. 

But enough background. On with the liveblog...

As has now become traditional, the morning started at the Volunteer Park Cafe, which has the significant advantage over everything else in the neighborhood of opening early enough to accommodate a quick meal before I have to be at the clinic. 

8:42 am
We're here, lines are in, blood's been drawn, labs are presumably proceeding, and I'm just waiting for the consult with the oncologist. 

9:18 am
I've seen the oncologist and been cleared to proceed. Happily (I think, but maybe it's not such a good thing), I've lost the six pounds I gained between Cycle 1 and Cycle 2. I'm back to 218. And like all doctors, this oncologist made it clear that it would be in my best interest to exercise more. When is that not the case? Guess I should give up the bus and go back to walking home from work.

Anyway, we're situated in the infusion room and now we just wait for the drugs to be delivered.

9:46 am
Still waiting. (Now aren't you glad I made this update?)

10:00 am
Oh joy. The nurse just informed me that the pharmacy is telling her that my order "went in after all these other people's" so we may be looking at a very long wait this time. 

10:27 am
Yup, still waiting. This seems to be shaping up into a very long day. I wish I'd remembered to search my wonder room -- Sib2's term for the spare bedroom that becomes an overgrown storage closet which prompts the question, "I wonder what's in this room?" -- for my cribbage board and cards. 

10:45 am
And we're off. The drugs have arrived and the Avastin is infusing. And while my head is now pounding, I'm pretty sure that it's psychosomatic as it started up before the nurse actually attached the drug to my line. 

11:32 am
The Avastin infusion is now done and we've moved on to the normal infusion. This will run two and a half hours, so, yup, going to be a long day. I was hoping to make a 3:00 meeting at work today, but I'm starting to think that's not going to happen. 

And aside from what's becoming the standard chemotherapy day headache (which is looking to be caused more from stress than any drug reaction), I've yet to see any immediate reaction to the Avastin (well, I suppose I could have some holes in my intestine, but at least I didn't have a stroke). 

And, yes, I probably should reread The Elements of Style for some inspiration on how to eliminate some of these parenthetical comments from my writing, but at least my parentheticals don't have parentheticals -- at least not yet. 

12:03 am pm
N tells me I look like I'm flagging. And I am. An hour ago I was ready to be done and go do something. Now I'm ready to go home and go back to bed. Plus, all the mouth weirdness has started back up. Good times. 

An hour and twenty-seven minutes to go by the clock on the infusion pump.

12:35 pm
I am currently being reminded of the movie, Broadway show, and soundtrack for Once, the primary song from all three of which is "Falling Slowly." The subject matter of the song has nothing to do with anything I'm going through, but the title is pretty much spot on with how I'm feeling. 

Fifty-four minutes remaining according to the pump.

And if anyone's wondering, Once in all its forms is great. If you opt for the stage show, be sure to arrive early.

1:13 pm
Feeling a little better, but still ready for a nap. And at risk of sharing too much information, I gotta pee. But dragging an IV pole with four bags of fluid and three infusion pumps and yards of plastic tubing down the hall to the bathroom seems way more trouble than it's worth. Twenty-one minutes remaining.

1:27 pm
The primary infusion is done. Now we're just waiting for the home infusion pump to be delivered so that they can hook me up and send me on my way. (GHC seems to be having some trouble planning ahead today.) 

1:29 pm
The pump has arrived. 

1:35 pm
All hooked up and ready to roll as soon as they give me the box and materials needed to be able to pull the line from my port on Friday when the machine beeps. 

And with that the Cycle 3 liveblog is over. Time to find some lunch. 

Tuesday, August 26, 2014

I've Decided to Blame the Chemo

Sadly, it is no longer possible to deny the obvious: when I look in the mirror, I'm seeing a lot more of my head than I'm used to seeing.

And while I could look at pretty much any of my male blood relatives -- grandfather, father, brother, nephew (sorry, guys) -- and reasonably determine that my genes have just finally caught up with me, I think I'd prefer to blame the chemo. 

First of all, hair loss is a well-known side effect of chemo, so it's not unreasonable to throw the blame that way ("I'm not balding, I have cancer"). But more important, if it's the chemo I can reasonably expect my hair to come back when I'm through with the cycles -- Come back, hair! Come back! -- whereas if it's the genes I'm pretty well hosed. 

So I'm going with the chemo (hope springs eternal). 

But this experience has raised a weird question: where does the hair go when it falls out of your head? It's not showing up on my pillow. It's not accumulating in the shower drain. I don't make piles of hair when I sweep.* It's not anywhere, including, increasingly, not on my head. 

It's like the Tooth Fairy got her wires crossed and is taking my hair instead -- though without leaving loose change behind. 

Oh well. At least I'm saving money on shampoo. 

* In theory; to confirm that this is, in fact, true I'd actually have to sweep. 

Monday, August 25, 2014

I'm Like James Brown

I feel good. 

If you didn't know otherwise, you wouldn't think there was anything wrong with me, much less that I was undergoing chemo. I'm not tired. I'm not nauseous. I don't feel flu-ish. I'm not even bothered by ice in my beverage. It's been quite a nice change. 

Wednesday, of course, is Cycle 3, and this time they'll be adding Avastin to the mix, so the likelihood of this continuing past Wednesday is pretty small. I just have to enjoy this while it lasts. 

Better yet, I could use the energy to do something productive, like clean the condo.

Or not.

Thursday, August 21, 2014

Three Life Lessons That Have Nothing To Do With Cancer

Today was the Summer Social at work which was held at a bar, slash restaurant, slash bowling alley a few blocks from my house on Capitol Hill. At the end of the event, I gave my friend S a ride home to save her a multi-bus commute. After I dropped her off, there was still an hour of light left so I took the Roadster for a drive. I started at the northwest corner of Magnolia, hung a left and drove south along the water. I managed to make it around Magnolia, past downtown and around West Seattle to Lincoln Park before it got too dark to see anything. 

On the way home, I passed a huge group of cyclists, all lit up, riding the opposite way along the water. They looked and sounded like they were having a lot of fun. It was pretty cool. 

The trip reminded me of three important truths:

1. Seattle is a beautiful city in the summertime. 

2. If you can't remove the top from your car, you're driving the wrong car.

3. It's nice to have friends with waterfront property.*

Oh, and since this is my cancer blog, I guess I should at least mention that while there wasn't much happening cancer-wise today, I was able to drink iced beverages at the Summer Social (yay!). I did, however, need to refrain from chewing the ice (boo!). At this point, things may be quiet on the cancer front until Wednesday when Cycle 3 starts. 

* Unfortunately, it's been a long time since I had friends with waterfront. 

Monday, August 18, 2014

And We're Back on the Upswing

Like last time, the post-chemo Sunday/Monday starts the upswing back to the new normal. Yesterday I was able to take the Roadster to a Mini show Sib2 signed us up for, and today it was back to work.* For the most part, the chemo symptoms have all pretty much subsided with the woeful exception of the ice thing. I still can't drink anything cold without my throat getting all weirded out. But if last cycle's trend holds, as it has so far, by Wednesday or Thursday I should be back to drinking beverages with lots of ice. 

I hope so anyway. The summer's just not the summer without lots of ice floating in your lemonade. 

* Out of the five cars in the Roadster/Coupe group, mine came in third. And no, I have no idea how the all folks who voted decided that one of a group of cars that were all basically the same was better than any of the others. But hey, I got a ribbon so who am I to question?

Hey! Comments!

I think I've finally figured out how to reply to comments, and I sincerely apologize for ignoring them for so long. If you've left a comment feel free to revisit whatever post you commented on to read my reply (which may or may not show up as an actual reply versus a new comment). 

That said, don't set your expectations too high. For the most part, there wasn't much to say besides, "Thanks!"  

Oh, and if I somehow overlooked your comment, I apologize for that as well. 

P.S. A little color commentary on the image: My siblings -- and probably cousins -- will no doubt recognize the tea bag. For everyone else, Constant Comment was my Mum's brand of tea -- and I'm pretty sure she got it from my grandmother. For the entire period of overlap between my life and Mum's, if Mum offered you tea this is what you got. As a result, for me "tea" is functionally equivalent to that stuff right there. Other blends might be tasty (and many are), but they aren't "tea." And I'm mostly a coffee drinker now anyway.

Saturday, August 16, 2014

Chemo Saturday Is Not a Good Day

It was a beautiful Saturday in Seattle,* but I barely knew it as I spent the entire day in bed feeling terrible. I'm now two for two on the Saturday after a chemo cycle turning out to be a pretty crappy day. I'm definitely starting to wish the cancer had been discovered at the start of winter, rather than summer, so I wouldn't have to waste our one nice season.

* The picture is for representational purposes only and was not taken today, least of all by me. 

Friday, August 15, 2014

Does It Matter If It's All in Your Head?

On Wednesday when the nurse was giving me the bolus of 5-FU I mentioned that it was starting to give me a headache. She asked, "Do you have a metallic taste in your mouth? Some people say they get that."  My response? "Well, I do now..."

It's hard to know how much of this stuff is real and how much is psychosomatic. Did I actually have a metallic taste from the 5-FU, or did I create it based on the nurse's suggestion? Do I really feel terrible today, or do I feel terrible because I expect to feel terrible? How is it that within fifteen minutes of detaching the infusion pump and removing the line running to my port I can feel so horrible? Shouldn't removing the line make you feel better? I hate these kinds of questions. 

In any case, Day 3 of Cycle 2 turned out to be very much like Cycle 1, which is to say that by the middle of the afternoon I felt terrible. Once I pull the infusion pump, my energy drops and the nausea rises, and I wind up on a fairly short fuse for needing to lie down. 

But Cycle 2 did bring a couple of new twists.

First, my teeth hurt. Why chemo would make my teeth hurt is beyond me, but mouth pain is unfortunately developing into a thing. Happily, I've yet to see signs of any open sores -- thank you Google images for pictures that will never leave my brain (yikes!) -- but the brushing thing has me nervous. I'm also finding that every time I try to eat or drink something I have to first get past a terrible pain in my jaw. The jaw works fine, but for fifteen or twenty seconds I get this intense pain in the joint. Weird. 

The other impact from Cycle 2 is that I have to find a new bus stop. I normally pick up my bus home at a stop that sits underneath the exhaust vent for Whole Foods or one of the restaurants that surrounds it. It's never been a pleasant place to wait, but at this point the smell is revolting. There's no way I can stand there for five or ten minutes waiting for the bus. I didn't last thirty seconds today. 

Still, though, I can't really call these complaints. Compared to many, I'm still having a pretty easy time with chemo.

Thursday, August 14, 2014

Cycle 2, Day 2 Summary

I've nothing significant to report about Cycle 2, Day 2. The home infusion pump continues to spit out 4 ml/hour of 5-FU, a few drops every ninety seconds. The side effects continue to be basically nonexistent, and more than a few people I saw today told me I "looked good." (I'm sure they were speaking in relative terms). So pretty much the only indication that I'm undergoing chemo was the weird little noise the pump makes every ninety seconds. 

We'll see what tomorrow brings. 

Wednesday, August 13, 2014

Chemotherapy, Cycle 2, Day 1 Summary

You of course gotta be careful what you wish for, but I have to admit that I expected worse from the chemo. A weird reaction to ice, being strapped to an infusion pump for forty-six hours, and a vague headache -- things could be a lot worse.

That said, if Cycle 2 is like Cycle 1, I won't start to feel terrible until Friday afternoon. And since chemo is supposed to be cumulative, I suppose things could get worse and get worse faster. So there's still time for my experience to move further toward the middle of the bell curve. 

But for now, it's all good.

Well, good for me. For those of you reading along, it's probably really boring. Tales of projectile vomiting or seeing all my hair fall on the floor or something would probably be a lot more entertaining. Maybe tomorrow. 

The Cycle 2 Chemotherapy Liveblog

Well here we go again. 

Already checked in and been cleared to proceed with Cycle 2. The big news? I somehow gained six pounds between the last cycle and now. I must be the first person who's gained weight while undergoing chemo. Maybe that's a good sign.

This time I'm accompanied by my divorce bud, D. We started hanging out when we were both facing marital difficulties, and it was always good for me as, no matter what was going on with my divorce, his was always infinitely worse. There's nothing like someone else's misery to make you feel better about your own. But then I had to go and get cancer, which was pretty much the trump card in the "who's got it worse?" game. Ah well, we all have our row to hoe.

In any case, time to track the progress of this infusion...

9:30 am
In the chair, hooked to a dextrose drip and just waiting for the chemo to be delivered. 

9:35 am
We're listening to weird cover songs. There was a strange version of "Suspicious MInds" playing at VPC this morning, and now D's playing Sam Smith's version of Whitney Houston's "How Will I Know" on his phone:

10:07 am
Still waiting on the chemo to be delivered and, sadly, ran out of weird covers to listen to. 

10:08 am
I spoke to soon. The drugs are here, and are being hooked up.

10:45 am
So far, so good. I may die of boredom, but no signs yet of any problems from the chemo. It seems like we may be seeing a repeat of the Cycle 1 experience. 

11:55 am
Still boring. No nausea. No vomiting. No weird tingling sensations. None of the interesting stuff people associate with chemo. Just sitting and watching the IV bag drip. 

12:20 pm
OK, today's infusion is done. All in all, extremely uneventful. Now we're just waiting for the infusion pump to arrive, they'll hook me up with the 5-FU and I'll be on my way. 

And with that, this incredibly boring (I'm sure) live blog is over. 

Tuesday, August 12, 2014

When Do You Pull Out the Darts and the Map?

It's probably something everyone experiences. You buy or otherwise acquire some thing, and then all you notice around you is all the other people that have that same thing. When I bought the Roadster, suddenly it seemed like every car I saw was either a Mini or a convertible. 

Similarly, when the oncologist told me I was going to die and, at best, they could maybe delay it for awhile, I became very aware of death. Read a book, and the story's about death. Watch TV, death. See a movie, death. Everywhere I go, I find stories of death and dying.  

And while I can't say I've read every book or seen every movie, I do believe I've discovered the definitive text on death. According to Wikipedia, it has roots in the Babylonian Talmud, but the story seems most frequently sourced to a "retelling" from W. Somerset Maugham (of which there seem to be multiple versions): 

The Appointment in Samarra

A merchant in Baghdad sends his servant to the marketplace for provisions. Shortly, the servant comes home white and trembling and tells the merchant that in the marketplace he was jostled by a woman, whom he recognized as Death, and she made a threatening gesture. Borrowing the merchant’s horse, the servant flees at top speed to Samarra, a distance of about 75 miles, where he believes Death will not find him. The merchant then goes to the marketplace and finds Death, and asks why she made the threatening gesture. Death replies, “That was not a threatening gesture, it was only a start of surprise. I was astonished to see him in Baghdad, for I had an appointment with him tonight in Samarra.”

Aside from Maugham, I'm pretty sure I've read variations on this story in Terry Pratchett's Mort, or one of the other discworld novels featuring Death, and it certainly informs one of the definitive films of my childhood, Logan's Run.*

And, sure, we can argue that the point of the story is the inevitability of death, or get caught up in the ironic twist of the servant thinking he's escaping death only to run headlong into it, but come on. The real message? 

When faced with death, RUN!  

The question is, how close does death have to be before you pull on your sneakers? I don't want to give up on effective treatments, but nor do I want to get stuck sitting around waiting for death to come to me. I suppose, ultimately, I wait for the next scan and, in the meantime, start thinking about the places that would make for a decent farewell tour. (Samarra's in Iraq, so that, I think, is out.)

If anyone has any suggestions, I'm all ears. 

* Okay, it's no Star Wars, but the combination of the futuristic settings, slightly terrifying scenes of people rising up in the air and exploding, and Jenny Agutter naked made Logan's Run pretty much a must see film for the (mostly pre-adolescent) heterosexual nerd males born in the sixties.

Monday, August 11, 2014

Decisions, Decisions, Decisions

This is not another attitude post, I promise.

I'm learning that one of the challenges of cancer is finding the appropriate balance between optimism, pessimism, and realism. As a cancer patient you're given a bunch of statistical averages and, if you're lucky, some vague uncertain prognostications, and you have to make your choices based on that limited information. It can be challenging, especially when you layer it on top of the human being's seemingly infinite capacity to deny that death is not only possible, but inevitable. 

By way of example, I currently have absolutely no documentation regarding what I want to happen to me and my stuff when I'm no longer capable of managing me and my stuff. No will. No power of attorney. No medical directives. Nothing. Now is it optimistic or delusional to ignore all that stuff? Realistic or pessimistic to suddenly decide to write a will? I have no idea. 

Similarly, if I suddenly decide that my life will be incomplete if I die before I visit, say, Toledo (to pick an absurd example), is it pessimistic or realistic to quickly cash in some vacation and head to Ohio. Again, hell if I know. But since I'm never more than two weeks from the next round of chemo, a mad dash to Toledo -- or Auckland or Dublin or Hanoi or Shanghai or Hong Kong or Mumbai or Johannesburg or any of the zillion other places that I really do want to see before I'm gone -- is pretty much impossible right now anyway.

More generally, I keep thinking back to my experience of my Mum's final months. I'm far from the expert on what she experienced, but the striking thing I experienced is that we never really directly addressed the fact that Mum was dying.* The assumption always seemed to be that there was more time -- until suddenly there wasn't and it was too late to ask Mum for the secret to the universe or if there was anything she wanted to do with her final days or any of the other things that should've been dealt with when Mum was conscious and engaged with the world. 

What are the realistic, pessimistic or optimistic expectations for the outcome of this little adventure? I have no clue. But unfortunately, it makes a big difference; a bad decision can have a huge impact. Take the optimistic view and assume you'll have more time, and you may not; take the pessimistic view, pull the plug and run, and you may end of giving up years you could've otherwise had. 

Maybe I should just buy a Magic 8-ball and use that to make my health care decisions. Continue chemotherapy? "Reply hazy try again."  Quit and make a run for it? "Better not tell you now."

How much worse could the decisions be, really?

* The closest we came, at least as a group, was when all four of us went out to see Mum and she decided it was time to part with exactly one piece of furniture. Mum had my brother and I bring out a small radio cabinet that my Dad had renovated and had been in our house since we were all kids. She had us place it in the middle of the living room and she turned to the four of us and asked, "Who wants the radio cabinet?" Based on our reactions, you would have thought she'd asked, "Who wants to hold the nuclear warhead?" None of us were touching that cabinet. I wound up with it only when Mum added that she thought I should take it since the XS and I had recently moved into a house that had more room than furniture. 

Sunday, August 10, 2014

What Was the Plan Again?

I've gotten some questions about my situation that makes me think it would be worth a brief rundown on where things currently stand...

Diagnosis: "Non-curable" stage IV colon cancer that has metastasized to my liver and lymph nodes. 

Colon cancer treatment: Surgery. And while I'll likely be on the frequent flyer plan for colonoscopies if the liver cancer doesn't kill me, the colon cancer was basically eliminated by the hemicolectomy.

Liver cancer treatment: Chemotherapy. I'm getting a combination of drugs (see my post on side effects for the list) delivered over approximately forty-six hours every other week. The plan is to go through four cycles of chemo and then have another CT scan to see if there's any indication it's working. If it is working, they'll continue the chemotherapy through something like thirteen cycles and then assess and adjust again. If it isn't working, I have no idea what they do -- and am not in the mood at the moment to guess. 

But actually, my expectation is that the plans will change as things roll along and the cancer does whatever it does. This seems to be a disease managed in bite sized chunks.

Which means three more cycles of chemo (or six weeks) and then a CT scan to see where we are. 

Cancer Is Boring

My apologies to anyone who's been wondering where I've been since Monday.

The cancer lesson for this week: cancer is boring. When they aren't filling you full of chemo, or your body isn't reacting to the chemo they've already given you, there really isn't much to write about. Time marches on and you go to work and live the day to day, though with the added flavor of wondering if you're in fact wasting what may be one of a (very) limited number of days left. 

And that cheery thought leads to the fundamental problem of a cancer blog: cancer -- especially cancer of the so-called "non-curable" variety -- can always be relied on to engender thoughts on the subject of dying. But oddly enough, every time I write about dying it seems to upset people. Go figure. 

On the other hand, perhaps the more one writes and thinks about death, the less upsetting it becomes (yeah, right -- I've been thinking of almost nothing else since June 20 and I still find it upsetting). 

In any event, I'm still here and will try to avoid such long periods of radio silence in the future.

Monday, August 4, 2014

My Blog, My Soapbox -- Political Interlude #3

The way America allocates health care is, in a word, nuts.

If you think about it, there's really only one variable that ought to determine whether or not you get access to healthcare: are you sick? If you are, you should be able to see a doctor. If you're not, why would you want to? All the other variables we've managed to link to health care access -- do you have a job that provides health insurance? were you able to secure insurance individually? do you have enough cash on hand to cover the (unstated) expense? -- are sort of a nutty basis on which to determine who gets to see a doctor. 

A few months back I was on the bus home from work when the driver got in a dispute with two potential passengers. The one had blood pouring from a wound to his head, and the other was trying to figure out how to get him care without insurance. They did't want an ambulance called since they couldn't pay for that and they didn't want to walk a block to the urgent care clinic as they couldn't pay for that, so they wanted the bus to take them to the nearest ER. The bus driver, however, was not open to using his Metro coach as an ambulance. It was an incredibly strange argument to witness, and you'd think a civilized society could do better than to leave people bleeding on the street.

I thought a lot about the guy with the bleeding head when I was making my way to the urgent care center with abdominal pain. The one thing I didn't have to worry about -- at all -- was how I was going to pay for the treatment. I was sick, I needed care, so I got it. 
Except that's not really the operational equation. The actual equation was: I was sick, I had health insurance, so I got care. Nice for me, not so nice for all the people out there who might be as sick as me but don't have the health insurance that would let them obtain care. 

And the funny thing is, at least as far as my urgent care visit was concerned, I didn't actually need the insurance. The total bill for the seven hours in urgent care, including CT scan, IV and morphine, was just over $750. My share after insurance was $20. A great deal, and one I'll happily take, but the truth is that I could've -- and would've -- paid the $750 myself to make the pain go away. 

Now the hospital visit, of course, was a different story, and the bill for that raises all sorts of craziness in how we manage health care. The total bill for my six day stay in the hospital, which was basically just the facility costs (since Group Health employed my providers), was just under $43,000. But because I'm a Group Health subscriber and Group Health and Virginia Mason have an agreement, VM knocked about $13,000 off my bill. Of the remaining $30K, Group Health paid all but $300. 

So my share of a $43,000 bill was $300. Sweet! And my insurer's share of that bill was only $30K, and $13K got written off. But of course, if someone without insurance wound up in my situation, their responsibility would be the full $43K. How does this even make sense?

And, of course, while having health insurance has protected me from the financial ruin that would've come from this lovely experience with cancer absent insurance, it's had its costs as well. Most notably, my options for treatment are basically limited to those Group Health offers. Even if SCCA was interested in me as a patient and I wanted treatment there, it's not really on option for me under my current insurance plan.

Like I said. The way we allocate healthcare? Nuts. 

The New Normal

There's not much left to be said about Cycle 1, except that I think it gave a pretty good indication of what I can generally expect from chemotherapy:

Step 1 - Start at normal
Step 2 - Get filled with drugs
Step 3 - Feel way, way worse than normal
Step 4 - Improve slightly, but not back to normal
Step 5 - Call Step 4 the "new normal" 
Step 6 - Return to Step 1 and start over

The only real question is at what point, if ever, do you get to go back to normal normal. Talking with a neighbor about his treatment, and his docs are telling him they have no plans to take him off chemo, ever. 

I'm really hoping my docs will come up with a plan that doesn't involve feeling terrible forever, cause living in the new normal forever doesn't sound a lot like living to me. 

And this was only Cycle 1...

Friday, August 1, 2014

Chemotherapy, Cycle 1, Days 2-3 Summary

So first and most important, I did get to use my ticket to Book of Mormon. I felt fine through Day 2, so my infusion pump and I made it to the show. I think I expected more than the show could ultimately deliver, but it certainly had its moments.

As far as the chemo goes, the home infusion was a mixed bag. On the negative side, having the infusion pump connected to you for forty-six hours is a drag. The needle is taped to your chest, and that gets annoying, and then you've got the machine making a little fuht-fuht noise every ninety seconds. During the day you don't really notice, but at night the pump is hanging off the headboard to my bed (the only real place it can go) and trying to sleep with it running is a drag. Also on the negative side, they don't really want you to shower with the pump attached, but I don't do well without a morning shower so I had to figure out a way to work around the tubing and the stuff holding the needle in so it all doesn't get wet. 

On the positive side, it took two days before I started to feel any negative effects from the infusion. I was able to pull the needle and power down the infusion pump today at noon, but by two o'clock I felt like I was coming down with a terrible case of the flu. Aches, pains, fatigue, nausea -- all the standards. 

We'll see how long it lasts. According to the nurses, I should start to really feel better right about the time I go back in for Cycle 2 on August 13.