Monday, August 31, 2015

I Hate It When I'm Stupid

I'm having a hard time with the fact that at least one of my tumors has gotten bigger. I have to say, despite what my PA said, it's pretty hard not to worry about such a thing. I can talk a good game about acceptance and all that, but when a flare like "growing tumor" goes up it's hard not to panic -- at least a little bit.

That said, I think my bigger frustration is that I succumbed to one of my biggest pet peeves: people who believe that the way things are is the way they will always be. Granted, the ability to look at the world and decide, for better or worse, that things will never change seems a basic human skill, You don't have to look too hard to find examples of people who were either a) operating from the belief that things would never change, or b) incredibly short-sighted.* But by the same token, there are so many such stories you would think people would figure out that change is inevitable and the likelihood that they will be an exception to that rule is pretty much nonexistent.

And yet here I am. I'd gotten used to the fact that I had cancer, and that the condition meant annoyances like neuropathy and fatigue and taking handfuls of pills each day, and truthfully, I assumed that that condition would hold for the foreseeable future. 

In short, I believed that they way things are is they way they would always be. 


But I guess in some ways that's a good thing. I still don't know what the current size of my tumor means -- I get scanned on September 14 and see my oncologist the day after, so I shouldn't have too long to wait for some answers -- but it was useful to be reminded that things will inevitably change, probably sooner than I'd prefer. This suggested that I need to be shifting toward some shorter term planning. It's all well and good to make long term plans, but at some point I'm not going to have much of a long term. 

Thus, if there's something that I need or want to get done, now's the time to do it.

So, naturally, after two years of mostly ignoring it, I spent this weekend moving my bathtub around so I could paint behind it and make it drain properly. (For the record, Sib2 helped.) I will be very unhappy if I become housebound in a condominium plagued with half-completed projects. 

It's a genetic thing. All of the sibs have stories of spending time in their last hours with Mum straightening pictures and adjusting her nick-nacks so that everything was just the way she wanted it. I don't mind crooked pictures (much), but I'd hate to depart the world from a half-painted room. 

* Need help getting started? Try Googling "professional athlete bankruptcy"...

Thursday, August 27, 2015

Today's Official Response to Oncology Day...

...will be presented by Kevin Kline, with support from Jamie Lee Curtis, in a scene from A Fish Called Wanda:

The contributing factors to this reaction are:

Number one: After three weeks of effort,* I managed to lose just 0.8 kg of weight. For those of you unable to do the kilogram to pound conversion in your head, this is just 1.75 pounds. My PA wouldn't even qualify it as weight "loss"; all she'd give me was "stable" (which I suppose is better than another fifteen pound gain). 

Number two: My current cancer treatment is inconsistent with ink. The Avastin, which is intended to prevent blood vessels from growing around the cancer, also prevents healing. The effects last for four weeks, and I get infusions every three. Thus, no tattoos without another extended break from treatment. I didn't even bother asking for a surgical referral. 

Number three: My tumor markers are up again. Not as much as last time, but still higher. If I recall correctly, the most recent values were 14.something, 19.4, and now 21.7. This is not trending in the right direction.

And number four: At least one of my liver tumors has grown since my last official scan. They did an out of cycle scan of my lungs at my last appointment looking for an embolism and the scanner caught the top part of my liver. Since it was in the picture, they measured the tumor. It had previously been measured at about 1.5 centimeters in diameter and now it's roughly 2.5. Admittedly, a centimeter seems small, but since what matters with tumors is volume you've got to divide each of those numbers in half and then cube the results. In short, it's about five times bigger than it was.

My PA told me not to worry about it; that we'd know more after my next scan in two-and-a-half weeks, and there was no reason to get too excited just yet.

Easy for her to say.

But I won't worry. Instead I'll just climb into bed, pull the pillow over my head, and pretend that I didn't hear a word she said. I find denial can be a very effective coping mechanism.

* Well, not Biggest Loser kind of effort. More of a "I'll have the small frozen yogurt instead of the large" kind of effort.

Tuesday, August 25, 2015

A Different Set of Choices

I seem to get a lot of my news from the elevator at work. Last week, one of the big stories was about former President Carter's new cancer diagnosis. These details struck me: an accomplished individual who is now 90 years old gets a cancer diagnosis, decides to fight and so immediately starts radiation treatments.

I mean, wow. 

I get that ex-Presidents must receive what is literally the world's greatest healthcare, but even that's not going to prevent him from experiencing the joyous side effects of cancer treatment. And at ninety, how much time can this actually be expected to buy him? 

I just have no comprehension of how one would have to exist in the world such that, at ninety, chemo or radiation or pretty much any sort of cancer treatment at all would seem like a good choice. I wasn't willing to tolerate it at 47.

And this doesn't even begin to address all the "death panel" considerations. I'm not sure how a Presidential risk pool works, or if there even is one, but assuming there is you gotta wonder how his fellow poolees feel about underwriting cancer treatment for a 90 year old. 

But more power to him. I hope his decision turns out to be a good one for him. 

Still, radiation at ninety? Oof...

A Cancer Update

Here's a completely subjective and data-free update on the state of my cancer as of three days before the next $20,000 Thursday...

Feet: Trashed
Fingernails: Trashed
Energy Level: Trashed
Appetite: Trashed
Gastrointestinal Operations: Trashed
Skin: Trashed
Sleep Schedule: Trashed
Soul: Trashed

So I guess there's a theme...

Three Lessons

I was reminded of three important lessons in the course of my weekend in the Sonoma and Napa Valleys, and figured I would document them here before moving back into cancer week. Thursday is oncology day, so cancer is again beginning to consume my thoughts.

In any case, my three lessons...

#1 -- Everyone responds to Dave

There's a lot to be said about The French Laundry (see lesson #3), but I think one of the things I liked best was the sommelier's response to Dave. It was pretty clear that our little group was somewhat out of our element at the restaurant, and the fact that Dave spent the entire meal on the table and I kept taking pictures of everything they brought out didn't really help much. 

But the sommelier, in particular, took it all in stride. Eventually he started commenting about Dave as he came around, and most of what he said was actually quite funny. More important, his tolerance of Dave went a long way toward making me, at least, feel a lot more comfortable. 

So, once again, Dave proves his worth. From Vietnamese villages to high end restaurants. it pays to bring your minion.

#2 -- Money is like air in that, for the most part, you don't notice it unless it seems to be missing

We were fortunate in that a few of the folks on our trip had been to Napa and Sonoma previously, and so had good ideas about selecting wineries to visit that would be fun and engaging to visit. They were, sometimes in unexpected ways.

At one of the places we stopped, we were entertained by the very friendly winery owner who had lots of entertaining stories to tell. She also had a somewhat under developed since of irony, telling a number of stories about the impact the new winemakers were having on the region. They'd made their millions in technology, Hollywood, professional sports and whatnot, and were now coming to Napa to buy vineyards and wineries, driving up the price of the land, making questionable choices with their vineyards, and generally not behaving in accordance with the established practices.

All presumably reasonably fair complaints, but a little ironic coming from someone who had "retired from her first career" in investment banking at thirty-something to take up the life of a vintner. 

To borrow a metaphor, everyone wants to pull the ladder to the tree house once they get inside. 

#3 -- Quality makes a difference

I have a well-developed sense of irony. I am well aware that I've got opportunities that a great many people don't have. There are plenty of people facing terminal cancer who spend their days climbing ladders to continue their work as roofers (by way of an example), rather than visiting exotic places and experiencing world class restaurants.

All that said, it's amazing how big an impact the kind of quality that The French Laundry practices can have. Nearly everything about that meal is perfect. The flavors are perfect, the textures are perfect, and the temperatures are perfect.

It's impressive what talented people can do when they really, really try...

...even if the results cost way more than  99.99% of the population can enjoy. 

Sunday, August 23, 2015

The GCW Tour, Sonoma, Napa & The French Laundry: Dave Presents The French Laundry

The French Laundry

Dave's ready...
Round 1: Roussanne

Amuse-bouche #1
Amuse-bouche #2

"Oysters and Pearls"
Six kinds of salt

Dave guards the butter dishes...

Galia Melon Soup

More wine...
...More bread

Slow Cooked Wild King Salmon
Chickpea Crusted Pacific Albacore

Round 3

Better when decanted
Supreme de Canard

Slow Roasted Elysian Fields Farm Lamb
Dave on guard

Andante Dairy Acapella
Honey Roasted Fig

Ice Cream & Strawberries
Peanut Butter & Jelly

"Coffee & Donuts"
...and then just coffee.

Friday, August 21, 2015

I Forgot About the 800 Pound Gorilla

So about those missing pills...

You can't say this about me too often, but it turns out I was unduly optimistic. Seems I was able to get my providers and the pharmacy on the same page, I forgot about the insurance company. Insurance's position was that they'd already paid for the pills for this particular three week period and so they weren't too interested in paying for more. And the appeals process was such that by the time I could've gotten that sorted out, we'd be on to the next cycle.

So, in short, 7 days of pills instead of 10.

Best healthcare in the world, baby. 

Thursday, August 20, 2015

The Shortest Leg of the GCW Tour: Sonoma

Tomorrow some friends and I -- plus Dave, of course -- are heading to Sonoma to have dinner at the French Laundry. Eating there has been on my list of pointless accomplishments for awhile now, and, incredibly, things worked out to make going there this weekend possible. 

Posting may be light, as there will be a lot going on.

And to all my friends in the bay area, apologies for not reaching out, but trying to add social calls to an already jammed up schedule was beyond my capabilities. 

And this time, as the saying goes, I'm just here for the food. 


There's a menswear blogger* who argues that wearing suits every day is by far the most effective method of weight control. Once you've got a closet full of suits, the last thing you want to do is pay to have them all altered as your weight goes up and down.

I'd forgotten that lesson until I tried on one -- and then most -- of my suits. I stopped wearing them three or so years ago when the dress code at work changed. Three years ago they all fit fine, and seven months ago I probably could've used them to cover a smuggling operation, as I could've taped quite a few packages of whatever to my body and still got the pants closed. Today, it would take an industrial strength corset to get most of the pants to close around my waist.

Cancer is hard on the wardrobe. 

At least I can sort of squeeze myself into what used to be my fat suit. I look like a Ball Park frank, but it'll (have to) do for the few hours I need to be in a suit. 

And I'm going to think very hard before scheduling any more events involving a dress code that requires anything more formal than cargo pants. 

* His blog is, or at least was, called "A Suitable Wardrobe." 

Tuesday, August 18, 2015

Is It Better to Pass Out in the Morning or at Night?

When I picked up my new ACE inhibitor today I asked the pharmacist about the likely side effects. He mentioned two: first, the drug can cause a dry cough; and second, because it's main purpose is to lower your blood pressure it can also cause you to become light headed.

Just so we're clear: the neuropathy in my feet has reached the point where I had to put handles in my shower to keep myself from falling over but the collective wisdom of my health care team has determined that what I need to do is take a drug that will potentially make me woozy and unstable?

Sure. Why not? Cancer treatment is nothing if not an adventure.

But this does raise the question of which is better, taking a drug that causes you to get woozy and light headed in the morning when you've got to get yourself to work, or at night when you're eventually going to go to sleep and may not notice the effect.

I'd say I'd thought this through carefully, but I've decided to go with the morning since that's when I'm already taking a handful of pills and it's less likely I'd forget this new one. 

But I may change my mind if I wind up passing out on the bus, as doing so would likely be both very expensive and very unpopular. 

I like a good adventure... I like a good adventure... I like a good adventure... I like...

Can You Get PTSD from Chemotherapy?

I certainly hope so, because if today wasn't chemotherapy infusion flashback then I've got a potential problem. 

In short, today I felt terrible. I haven't felt this bad since the chemotherapy infusions stopped. At first it was just fatigue; it was all I could do to put one foot in front of the other. But as the day wore on I started feeling nauseous. Happily, there's a bright line between nausea and vomiting, and I never crossed that line, but spending all day wondering how close you're getting to the line is not pleasant. It was all I could do to eat, since just the thought of food made it worse. 

I've come up with four theories (so far) for what's going on, presented here in the decreasing order of preference:

Option 1: Chemotherapy-related PTSD

It would be great if this was just a momentary flashback, even if I had to deal with future flashbacks. I like mental things. I'll take something that can be treated with alcohol over something that has to just work it's way out of your system any day.

Option 2: Some generic flu or some such

This has the advantage of being short-term and unlikely to repeat, but the disadvantage of being annoying as hell. I've got enough going on without having to deal with some random virus or some such that I've inhaled. 

Option 3: Drug interactions are starting up

No idea how one would test this short of discontinuing all the pills, but it's certainly possible that the generic cruddiness I'm feeling is due to some interaction between the numerous drugs I'm now taking.

Option 4: The pills have piled up to the point that I'm now getting chemo side effects

This, frankly, would suck. The main reason I'm taking the pills is to get the (if potentially limited) benefits of chemotherapy without the intolerable side effects. If I'm now going to start getting side effects from the pills, then that pretty much undermines the primary half of the justification for taking the bleedin' things. 

No idea yet what the likeliest answer is. I suppose we'll just have to wait and see how things trend. 

The Unusual Suspects

I'm not exactly sure what an ACE is, but since all of my medical providers are in agreement that mine need to be inhibited it now takes a dozen pills, plus a minimum of five injections, to get me through the day. Here's the current line-up...

A: Capecitabine (aka Xeloda), oral chemotherapy, 2000 mg (8 pills) a day
B: Venlafaxine, the anti-neuropathy anti-depressant, 37.5 mg a day*
C: Lisinopril, inhibiting my ACEs, 2.5 mg a day
D: Aspirin, to prevent blood clots, 325 mg a day
E: Fexofenadine, a generic allergy medication that allows me to breathe, 180 mg a day
F: Insulin glargine, 58 units a day, taken as two injections
G: Insulin lispro, variable amounts taken in three to five injections a day

And this is just the stuff I have to take. It doesn't include the infusions I get every three weeks, nor does it include the headache pills, anti-nausea medications (in three distinct varieties), gastrointestinal distress medications (four variations there), or whatever else some provider throws at me in response to some short-term issue. 

As a small child I frequently found myself placed among groups that for some reason or another were singing "I'm a Little Teapot." I can't say that experience ever left me feeling much like a teapot, but these days I'm sure as hell starting to feel like a petri dish. 

I'm a little petri dish
Flat and round
Side effects and drug interactions get me down...

Yeah, somehow I don't see that replacing the teapot song among the kindergarten set anytime soon. 

* I actually thought I was on 75 mg so I'll need to ask my PA about this. Sad to say, it wouldn't be the first time my dosage got screwed up between the SCCA and my pharmacy.

Monday, August 17, 2015

Today In Feet

A lot was happening south of my ankles today. First up, I took my first shower in my new, safety-enhanced, shower. The handle was quite helpful getting in and out of the tub, and the little textured stickers seemed very effective and keeping me from slipping around. 

At least I'm giving credit to the stickers, as the tub used to be very slippery and this morning it wasn't. The odd thing was that I couldn't actually feel the stickers with my feet. As far as my feet were concerned I was standing on a uniform surface. There was no sensation that this spot was textured and that spot wasn't. It was weird and slightly disturbing.

At that point, I could at least sense that I had feet. That stopped on my way home from work. I stepped off the curb and it was like I left my foot back where I'd been standing. It was a very odd sensation and made it really hard to walk. So I took the bus.

And by the time I got off the bus my foot was again attached to my ankle. Which is important because I like my foot. Also, last night I learned that there is something called the Coast to Coast Walk in the United Kingdom, which looks awfully entertaining. Problem is, to make the walk you sort of need to be able to walk, and reliably so. I'm not sure I'd want to undertake that with my feet disappearing. 

And that, more or less, is today's story of feet.