19 posts tagged “cancer”

First - why haven't I posted those pictures yet? Because I've been busy, that's why. So there.

Second - a bit of humor, from one of my coworkers. It seems that Ikea will be taking over GM soon. Here is an image of the new business model

Finally - today Ken went to the MD Anderson center. They are one of the top cancer research and treatment facilities in the world, and everyone there from the volunteers running the information desk to the receptionists to the doctors and nurses go out of their way to show you what true professionalism is. They were unfailingly polite, patient, and capable [1]. They answered every question, no matter how trite, and no matter how many times we asked it. They understood that this is a stressful time for the patient and did their best to make it less stressful.

The upshot is that Ken has three options right now. First, he can go off of all the medicines and let the cancer run its course. The doctor gave him an optimistic three months if he does that [2]. Second, he can continue on the current regime, which has slowed the cancer but nothing else. The doctor gave him six to nine months if he does that. Third, he can go on the only clinical trial he is eligible for [3], which will require a weekly infusion of a six-drug cocktail with one week out of every four off for good behavior. Because this is a Phase I clinical trial, the infusions and check-ups will have to take place here in Houston [4]. With luck, he will last between a year and two years on this regime.

Ultimately, this is his decision. But I'll lay long odds that he goes for the clinical trial. After all, that's the only one that lets him go sailing in Florida this fall...

John

[1] Minor example: while I was in the waiting room, sitting around while Ken got evaluated for the trials, a patient went into a seizure. Within one minute, there were three nurses and two doctors by him, evaluating what needed to be done and doing it. Even more astonishingly, when the nurse over-ruled the doctors and told them that they didn't need the crash cart, the doctors said "OK" and let her get on with helping the patient. These folks are almost enough to get me over my phobia of hospitals!

[2] Admittedly, this estimate was given after I asked, as were the other two. But she was willing to tell us! Do you have any idea how many frickin' doctors get so set in their "god-like smartypants" [a] that they are unwilling to admit that they might not be able to beat the disease?

[3] They were honest and fair on this one, too. They told him that because of the type of cancer (glioblastoma multiforme) and because of the amount of damage (60% mobility and dropping), there is no cure. All they can do is extend his life, not save it.

[4] Fortunately, he already has a place to stay while they do this. It even has a ground-floor bedroom - how lucky is that?

[a] Geek points (for anyone except QoFB [i]) for the source!

[i] Who is ineligible because she introduced me to the source...

It is full of boobs; witness this email from a member of my Krewe:

Super Boob Sunday!
Some CRAPpers are marching today in the 1st annual Krewe Deux Boobs [1] parade.

“Why boobs?”, you ask. (Not that one needs a reason.) The parade, whose theme is “Save Second Base”, raises money for local breast cancer patients.

Our pre-party will be from 2-5 at Fahy’s Irish Pub (Toulouse & Burgundy).

There will be a short parade/barhop following that, and then a post-party at Boondock Saint (across from Pat O’s) from 6-10.

We’d love to see ya!

What more can I say? If you are in New Orleans today, please come out for the Krewe Deux Boobs parade (they'll really put their breast foot forward, no nipple and dime-ing, as the Cajuns say "aureole!"). If you aren't, please consider making a small donation to support breast cancer research.

John

[1] For those not in the know, this is a play on the "Krewe De Vieux", our mother krewe.

Passing by the Hubbard Glacier was the highlight of the trip. We spent most of the day on the balcony, watching the glacier calve [1] and drinking hot chocolate [2]. The glacier stretches 76 miles from Canada’s Mt Walsh to Disenchantment Bay in Alaska. It drops 11,000 ft in height and is over six miles wide where it meets the bay. It takes ice about 600 years to make the trip from the snowy mountains to the sea.

Hubbard Glacier is Alaska’s largest tidewater glacier (a glacier that flows into the sea). Joined by Valerie Glacier, it has been known to create ice-dams of Russel Fjord. In 1986, it formed an ice dam that lasted for six months before giving way in the second-largest glacial outburst flood in recorded history. Similar floods during the ice age scoured parts of Idaho and Oregon down to the bedrock, forming the channeled scablands.

The glacier will calve unexpectedly and frequently from below the waterline, creating new icebergs that pop out of the water like Venus arising from the foam. These icebergs can be as large as a ten story building and may become airborne. Thus, cruise ships must keep their distance, lest they re-enact the Titanic’s voyage. The boys didn't mind - they just enoyed watching it split apart.

John

[1] Break off small chunks, suitable for sinking ships.
[2] Free room service. Just another benefit of cruising!

Icy Straight Point was created as a compromise between the locals who wanted the cruise ship revenue, the locals who wanted to preserve the traditional ways, and the cruise ships, who wanted to have someplace to separate their passengers form their money. It is nearby to Hoonah, Alaska’s largest Huna Tlingit community on Chichagof Island.

The Huna Tlingit have lived in their “village by the cliff” (the meaning of Huna) for hundreds of years; a legend tells of  moving from a home in Glacier Bay that was destroyed by a glacier’s movement. The first European settlement happened in 1880, when the Northwest trading Company set up shop, followed by the Presbyterian Home Mission in 1881. (The US Post office didn’t arrive until 1901.) A cannery was established in 1912 and provided one of the underpinnings of the local economy (the other two were logging and gold). Sadly, all three resources began to dry up in the 60’s. Only with the creation of the port has the economy begun to revive.

Because they have you trapped here, the best model for Icy Straight Point is that of Disneyland in the old "E-ticket" days. Everything costs money [1]. And everything is sanitized - cleaned up fakes that shield your delicate tourist eyes from the brutal details of fish canning and logging and tribal life and such. But Ken and the kids enjoyed it, even if there was way too much shellfish around for my taste [2]. On the bright side, by arriving near the end of the season, all of the souvenirs were on sale. So a lot of my friends got things from here...

John

[1] For example, we spent $120 on lunch for six people. And then we spent another $120 for a 45 minute show.
[2] I.e., any.

The inside passage is a relatively safe cruising ground for ships. However, though the 10,000 islands of the Alexander Archipelago offer shelter from the worst of the weather, those same islands create tides and currents that are both strong and sudden. Sea level can vary by as much as 30 ft in some places, and currents can run as fast as 20 mph.

The inside passage stretches some 900 miles from British Columbia to Glacier Bay. It is nearly 100 miles wide, with more than 15,000 miles of coastline and thousands of coves, bays, and inlets. Despite the size of the inside passage, we almost always had at least one other cruise ship in sight - which should tell you something about its popularity!

It is also popular with whales. During the passage we spotted humpbacks several times. Others reported seeing orcas, but we had no such luck. Probably because we were busy exploring the ship...

John

This is a great city. The people are friendly, the taxis are (mostly) reliable, and the sites are great. The food is only so-so [1], but you can't have it all. We went to the aquarium, to Gastown [2], to Granville Island, and rode the trolley around Stanley Park [3]. The kids rode the train and got scared by the goats in the farmyard [4]. Nothing was more than about 1/2 mile walk away, whihc was Ken's limit. So the rat-bastard in the group made him walk everywhere. He slept well each night!

 If you want a family-friendly place to visit, this should be on your list.

John

[1] Hey, what do you expect? This is part of the British Empire, er, Commonwealth after all!
[2] Not nearly so scary in the day time as the guidebooks made it out to be.
[3] A great, FREE tour of the area. Simple, fun, and FREE. Did I mention that it was FREE? (Yes, I'm cheap.)
[4] And I discovered a neat way to frighten chickens. Now get your minds out of the gutter...

Last weekend, Ken conned me into taking him to the Wildflower festival in Richardson. We spent five hours there on Friday night and another six hours on Saturday; looking back, I am somewhat amazed at his stamina. He walked quite a bit [1], and ate some [2], and talked to people [3], and had four (count 'em folks - four) beers on Friday and three on Saturday [4]. And we listened to five bands (and paid $30 {each, total}):

Loverboy - the years have not been kind to them. Their hits were definitely a product of the 80's, and the tight leather pants just don't fit any more.

Pat Benatar - The years have most definitely been kind to her. Her voice is as good as ever, her love for her husband is as evident as ever, and her ability to rock is as great as ever.

Blue Oyster Cult - Fun, loud, and silly. But what is it with the cowbells?!?

The Guess Who - Wow. They had an amazing number of hits. And they still remember the lyrics, despite living through the 60's...

America - A great band with thoughtful lyrics. The lead singer has lost a little of his edge [5], but could still make you feel the meaning behind the nonsense.

If you are ever in Richardson, TX, during the Wildflower Festival, you'd be missing a treat if you didn't go.

John

[1] OK, I made him walk quite a bit. On Friday, he walked down the steps to the stage (but sat in his wheelchair the whole evening). And on Saturday, he went from one end of the festival to the other - almost 1/2 mile - before needing his wheelchair. His PT people owe me.

[2] He is in the "no appetite" stage of cancer, so this is more encouraging than it sounds. The problem with this stage is that it carves away his fat just when he needs it the most. He has already dropped 15 pounds, and I expect him to lose another 25 by August.

[3] OK, I made him talk to people by talking to them first. He doesn't have time to be shy or reserved.

[4] Which he made me go and buy, along with his Blue Oyster Cult More Cowbells t-shirt [A] (which took six trips to get, as he kept adding details that I'd have to go and check on). He claimed it was so he could hold our places with the wheelchair, but I think he was just trying to get some time by himself. He hasn't had any time without others hovering over him since this started...

[5] Reminded me of Billy Holiday, in a way. As her voice gave out due to the booze and the drugs and the bad clubs, the pain took over and made the songs deeper and richer, despite the lack of technical refinement.

[A] Seriously - what is it about cowbells?

I spent last weekend with Ken. His mom was happy to see me [1], as was Ken. John had come down for Friday, so we had one last "boy's night out" before Ken went to Florida for a month [1]. We went to a "Young Active Professionals" party [3], where Ken managed to lure a couple of young ladies to a table in the back that we had staked out. We spent the evening in small talk [4], and had a good time.

The next day we went to see "The Dark Knight" [5] and lunch before John went home. Ken and I spent the evening getting his will ready. He's leaving everything to his parents and wants a Roman Catholic funeral - but has made me pay for my sins by being his executor [6]. But that is one less task to accomplish [7].

Sunday we went to mass, where I collared the priest and read him the riot act for not putting Ken's name in the "pray for me" list and for not coming by to offer thanotic counseling [8]. Ken was amused and apalled, but that is another thing taken care of, as the priest has promised to start the ball rolling.

So that's how my weekend was. The week, now that's another matter...

John

[1] For some reason, she thinks I'm a good influence. Little does she know, eh?
[2] His parent's idea. They need some time in their home, and are probably hoping that they can convince Ken to move back there with them. It would serve me right; they live an hour away from Miami...
[3] Our standard line was "Ken's young. John is active. The other John (me) is professional."
[4] The young ladies were amazed that I was a geophysicist [a]; it seems they had never met one before. That's odd - I see some every day. And, just to be clear, I let them do most of the talking. I'm not a complete clod...
[5] Great movie, but not for kids. Not even if you pronounce it "K-nig-it" [b].
[6] Even though I tried to show how little I knew about it by pronouncing the word "executor" instead of "executor".
[7] Why did I push so hard on this? Because it is necessary, both from a legal standpoint (keeps misunderstandings about Ken's wishes to a minimum) and from a moral one (helps Ken with the grieving process). By giving him a concrete example of how life will go on after he's gone, a will keeps him connected to life. This helps to combat depression and isolation (two endemic problems in care for the dying). It also assures him that he can control his life, at least to the extent of saying what happens after it is over. And maybe that will keep him from buying that 2-seater convertible he's been talking about [c]...
[8] I'm going to hell! I'm going to hell!
[a] And more amazed at my NASA background (brought up when they said "it's like meeting a rocket scientist"). Why is that so unusual?
[b] Geek points for the reference!
[c] He blames it on me and my new car, but it is a typical reaction to a near-death experience: doing something silly just to prove that you are still alive and in control. It could be worse - he could have decided to get married!

The best word to describe this weekend is "grr..." [1]. Someone placed a cosmic kick me sign on my ass (metaphorically speaking) and it worked like a charm. And it was supposed to be such a happy weekend…

You see, Ken was supposed to be out of the hospital. Last week, while getting out of his truck, the wind blew the door, which hit him, knocking him to the ground and breaking his hip. When he called to tell me about the accident, he said he’d be out by Monday. So John and I planned on going down to give him his ration of crap for making his life more difficult than it needed to be.

Except that the doctors decided to put screws into his hip. So now Ken is tuck in the hospital until the end of this month. And the first that John and I knew of this change in plans was when John got to Ken’s house, only to find the door locked and nobody home.

Meanwhile, I was driving up from Houston. Ignoring the optometrist, who tried to talk me into having my eyes dilated, and the Houston traffic, which was as awful as usual, and the McDonald’s, which managed to not only give me the wrong order but sabotaged the one I did get so that it spewed mayonnaise on me with the first bite, there was the added joy of a series of frantic phone calls from my office when the data that was delivered late and incomplete turned out to have the wrong loading sheet as well and  two and a half traffic tickets. I freely admit that I deserved the first ticket; 85 mph in a 70 mph zone is unlawful - and worth about $200 to the local sheriff [2]. But then I slowed down to 70 - only to get a citation because apparently the speed limit goes down to 65 at night in that part of Texas. And, while giving me the citation, the sheriff noticed that I had Florida tags but a Texas inspection sticker. So I got another ticker for not completing the address change inside of 30 days [3].

Back at Ken’s house, John called Ken and got the name of his hospital. He relayed the information to me, and I met them there. Much laughing was had by all, especially when I gave Ken a bottle of Armagnac that he had lusted over at my place. Ken called his mom at his house and got her to promise to leave the door unlocked for us. So, after playing merry hob with the visiting hours [4], at midnight John and I headed back to Ken’s house. Only to find the door locked and everyone sound asleep once we got there…

So we piled back into the car and went to the motel nearest to the hospital, where for a mere $55, we got a clerk who could neither speak English nor take the phone from his ear long enough to talk to us nor give us two rooms [5]. Fortunately, the room he did give us was large enough, empty enough, and shabby enough to hold a rodeo in, and included two beds [6]. So, after ignoring the solicitations [7] of our neighbors, John and I went to sleep for six hours.

We woke up promptly at 7 AM so that we could bring Ken his favorite – omelets with everything and Starbucks coffee. Only the first three places the navigation system suggested had burned down or been closed. We did finally find a Denny’s where they were happy to take our order and even filled it reasonably quickly, but we were still late. As we got into Ken’s room, the assistant was trying to talk Ken into going into breakfast.

We ate breakfast and told the nurse that we were kidnapping Ken that afternoon. She rounded up the doctor who gave her permission, provided we went through training [8]. So we waited for Ken’s physical therapist to show up. And waited. And waited. (And called the office to keep sorting out the data loading problem.) When she finally did show up, she tried to excuse herself with “Well, the head of the department wanted to talk to all of us” – and wasn’t pleased when I pointed out that (A) that was no excuse for being rude to a patient by being late, and (b) the patients were the reason she was there, and (c) if she was unwilling to tell the department head that she had an appointment, I would do it for her [9]. She did “train” us (“Don’t let him fall down”), and we went to Ken’s house, which is where he wanted to go. The head nurse told us we could only stay out until 6 PM, due to hospital regulations on what constituted an “in patient”. While at Ken’s house we took the precaution of getting a spare key. We brought him back on time and in one piece, and then stayed around until about 10 PM making Ken and the nurse laugh.

Sunday morning was McDonald’s for breakfast and four straight hours of PT for Ken. While Ken was in PT, the local Catholic volunteer came by, and I took the opportunity to bend her ear about the notable lack of visits or thanotic counseling by the parish priest [a]. She looked shocked and then appalled, and promised to bring the Monsignor by (which she did, later). I also called the office to continue sorting out the problem with the data.

After PT, Ken was free to go back home for an hour. On the way to his house, we stopped for ice cream at Braum’s (Ken’s decision). At his house, I took the doors off of his closet and his bathroom so that he could use his wheelchair to get around [10]. We then took him back to the hospital and I headed back home. On the way back, my sister called to tell me that the windstorm in Virginia had pushed a tree through the roof of the house I had bought for my mother. Nobody was hurt, but the roof is damaged and awaiting an estimate from Allstate. And got a message from my boss telling me that he wanted to see the IT guy, me, and the data suppliers in his office the first thing Monday morning [11].

But at least we got Ken out of that dreary hospital for a day – and switched the hand lotion for cheese whiz (but that’s another story).

John

[1] Followed closely by "Arrgh!"
[2] As my dad says "If you can't pay the fine, don't do the time"
[3] I tried, I tried. But each state does things differently.
[4]  Which his nurse cheerfully ignored as we were the most fun she had had all day. Ken has great nurses.
[5] Apparently, two people wanting a room each was a rarity at this motel.
[6] Hey, it’s a guy thing. Besides which, John has cold feet.
[7] For what, we were never sure. The guy asked for a light, and then if our room had a phone. John said “goodnight” politely enough and closed the door.
[8] Ignoring the fact that I had three years of practical experience in moving people with brain cancer, we had already been through the training once before. But that was at a different part of Baylor and so didn’t count.
[9] This last said when she tried to say that she couldn’t interrupt the head of the department [a].
[10] Only fair; on Saturday, John was stuck redoing the shower head while I did laundry for Ken.
[11] Which he did. He didn’t blame the IT guy (who truly was innocent) or me (who deserved a little of the blame), but really reamed the data supplier (who then got it from me for dropping the ball in such a spectacular fashion [a]).
[a] I can be such a bastard sometimes.

Ken got the results of his MRI today; they were about what had been predicted. They got less than 30% of the original tumor with the surgery that left him crippled on his left side. The chemo shrank the remainder some, but not enough. So his doctors have told him he'll need at least three more rounds of more aggressive chemo (double the last dose).

Ken didn't ask the doctors how much this would stretch his life, nor how bad the side effects would be, so his asshole -in-chief told him to do so tomorrow and report back. Based on prior experience and what the doctors aren't saying, it looks like the two year prognosis was optimistic. AIC also let Ken know that he should expect to lose a lot of weight, a lot of energy, and that he may experience sleeplessness, mood swings, and behavioral changes [1]; Ken will check that with the doctors tomorrow as well.

And, of course, to add the cherry onto this sundae of shit, Ken's father is back in the hospital with a ventricular arrhythmia. He'll probably get a pacemaker to smooth things out, but that won't lower the tension level.

John

[1] Goddammit! It isn't my job to be honest about the effects and prognosis; it is the doctors'! Why aren't they doing their damn job?!?