Having cancer

Mr. Peach, it’s been a month and you still don’t have your taste back? Egad. I miss the taste of so many things. The weird thing is that stuff still smells good. But once it’s in my mouth, it’s almost always a flavorless mass. I’m basically eating textures. I really miss coffee. I figure my system is getting inundated with so many stimulants, and drugs, and certainly more sugar that I like to eat because sugar stuff gets me calories, that I don’t really need caffeine. But once I’m not taking medication and I can actually taste it, I’m going to have myself one hell of an espresso!

So the thinking about the G-tube is that if I lose ten percent of my body weight, it becomes a recommended thing. I was 180 when I went in three weeks ago and now I’m at 169. I have a bit more of a margin, but it’s going to take some serious commitment to maintain my weight, especially since things are going to be more difficult over the next several weeks. At this point, I haven’t thrown in the towel. I simply don’t want another procedure done, and I certainly don’t want to feed nutrients directly into my intestines. But the odds are against me and the last half is definitely going to be more trying than the first half.

And, yeah, the gross situation with mucous and saliva is another major issue. I’m spitting left and right like a baseball player and the build-up definitely wakes me every few hours at night. Was your voice affected? Mine is pretty seriously impacted right now, but they’re unsure whether it’s going to get worse.

-Tom

That’s awesome. I should set up my Steam account on one of their machines in case I need to kill some time!

-Tom

My Dad had a G-tube put in over a year ago when he was having some pneumonia-related swallowing issues. He didn’t like the idea at first (he thought it was dehumanizing and was sick of spending time in hospitals), but it probably saved his life and wasn’t a big deal once it was in. It’s out now and all is well. If you need one, don’t dread the experience.

With regards to your appetite, have you considered drinking shakes? Specifically, thick, creamy, chocolatey goodness made right from your blender with some almond milk (or regular), couple of scoops of protein powder, a banana, oatmeal for texture, scoop of peanut butter,and some frozen fruit. You can easily concoct a delicious 1000kcal shake!

Next door neighbor, young guy, was apparently born with a latent stomach cancer - or so his doctors explained to him. It’s the same type as breast cancer, and it’s all through his abdomen. He’ll never be free of it, but they chemo it to keep it under control. However, he’s looking at a lifetime of chemo of some sort. I can’t imagine.

I watched my mom go through her chemo. She was a nurse and volunteered for an experimental study which was huge doses at twice the normal rate. The neighbor guy doesn’t seem to have the same sort of digestive tract issues it caused her, thankfully. Must have been the hyper aggressive nature of her program, which in hindsight was a heroic but unwise thing to do. How Dave Markell described his “turned black and hurt like hell” happened at both ends of the digestive tract. To paraphrase “Swallowing is highly unpleasant, but I dread trips to the bathroom”. She got by, and minimized solid waste, with those nutrition shakes. Apparently the milky and coldness provided some relief.

It’s really amazing once people start talking about it, how everybody has somebody that has encountered this thing. It’s also a testament to modern medicine that quite a number of those people are still around, doing fine.

Now, for something positive… my grandfather had his first heart surgery at 50. By 85 he’d had 4 in total. Lived right, ate right, super active guy, just had genetic predisposition. Prostate cancer at 68 or so. Survived all that. Died suddenly and surrounded by family, the day before he was supposed to go on a golfing trip. Active and happy to the last moment. His heart surgeon spoke at the funeral, and I learned he was the first patient to ever get whatever the kind of second-surgery bypass in the country, and he did it two more times afterwards. So, apparently my family is medical-journal famous or something. Anyway, nothing could slow him down. They’d tell him he’d be down for a month, he’d be golfing in 2 weeks. Chemo, radiation, open heart surgery 4 times, and he just kept golfing.

So, Tom… do you golf? You might want to start. There’s apparently something magical about it. Dust off that copy of Tiger Woods.

Oh yeah, and since you need to keep busy to keep your focus on winning… could you knock out another couple of Shoot Clubs? That’d be great.

Oh, I was a smoothie junkie for a while there. I seriously craved them and we had started loading them with protein powder. I saw “we”, but it’s really all Christien’s doing. He’s been amazing about doing what he can to keep me well fed.

But at some point, the cold got to be really painful to my throat. And I just found out today that the bananas might also be burning my throat because of the potassium. But, yeah, I can still do smoothies loaded with calories and protein. I can’t taste the darn things. But if I let them get a bit closer to room temperature, they’re still a great idea.

-Tom

Yes! Bananas in smoothies do burn; have left them out. I also have to let things get closer to room temp to tolerate them still. My go-tos are a yogurt smoothie and chocolate shakes. My smoothie is with plain (with fat) yogurt, spinach, and “Dixie Peach” a sort of peach nectar juice that Trader Joe’s sells. My shakes are just vanilla ice-cream and milk and chocolate flavored protein powder. I have also found peanut butter or too much texture still irritates my throat. Maybe I’m just a wimp.

Second half of your treatment… yes, it does keep getting worse before it begins to get better. Good to see you’re not kidding yourself. But keep it up if you can; amazing to me that your throat can still tolerate your feedings.

Taste. Beyond irritating by now to not have it coming back yet. I’ve been warned (“everyone reacts to treatment a little different”) that it could be months. Spoke with one guy who didn’t get his back for over 6 months after treatment BUT says it did all finally come back in the end. When I couldn’t swallow even liquids I used to dream of water. Now all I think about is food and what I’m going to have when I can taste things again.

Edited to add: Oh, my voice. There was a point, probably about where you are now, that my voice was affected for a week or two and I all but lost my ability to speak for a few days. But it all came back soon enough; I’d forgotten about it until you asked.

More power to you, Tom.

I agree wholeheartedley.
I’m the guy they call when peoples psychological reactions go too far out of the norm.
I soothe, I calm, I treat, I counsel, and I comfort.
And when the patient is ok I do the same for the staff. Because they have six more patients to treat before they can go home.
I’m not trying to diminish anyone’s plight here, simply recognizing the toll this disease takes on a number of people

Tom, that was a really strong text. Thank you.

Okay, here’s another side effect of chemo I wasn’t warned about: hiccups.

I jokingly told Na as I hopped onto the gurney for radiation today that it’s a good thing they didn’t call me in five minutes earlier, as I’d been waiting for my hiccups to go away.

“Oh, no, we can’t do your treatment if you have hiccups,” she said. “We have to wait until they go away.”

Here’s the height of modern medicine, curing cancer, but potentially put on hold by a case of hiccups!

-Tom

Tom, thank you for sharing your experiences. Keep writing. Keep writing because you have a great talent, because its important for others to learn, because it will help your friends (meaning all of us here) to understand, and because the writing can be therapeutic for you as you travel through this.

And keep writing because in five years when you’ve kicked this thing you can go back and re-read it all, and say ‘shit, did I really go through that?’ When our son got sick I wrote at first, and it helped, but things got too overwhelming and I stopped. I wish I hadn’t now.

So keep writing.

Tom, I know I am likely echoing other’s thoughts (and, I will read them all I promise). I’m so glad you are sharing what you are going through.

Well, what did I expect, you’re a damn good writer (I got you in my top five and those others are, like, novelists who make millions I am thinking!), and it’s pretty hard for you to talk (save your energy!), and, you have always shared your genuine curiousity about life, games, other human beans, with us all.

It’s in your nature to share (not mine, I was told by my mom about 50 years ago that I didn’t share with my younger siblings), and I think the saying “A burden shared, a burden halved” rings true. In this case, all your friends and family and the people who caree about you and love ya, we can’t really share the physical side of what you are going through, but, if each of us can take a tiny little share of the emotional burden, I’m thinking that helps. We got your back Mr. Chick!

Thanks Tom for your updates, can’t wait until you’re back on the casts!

Today is a really good day. It feels normal, which is kind of remarkable since it’s the second day after a nine-hour chemotherapy session in which one hour is spent pumping a toxin called cisplatin into my system and the other eight hours are spent pumping fluids and anti-nausea medication into my system. The fluids are to flush the cisplatin out of my kidneys, where it can do unwanted damage. The anti-nausea medication is to keep me from vomiting out all the hydration.

“People used to vomit their heads off,” my oncologist said about cisplatin. He explained that patients would be in the hospital for days at a time, hooked up to IVs to keep them hydrated while they vomited repeatedly. It was an exercise in flow control. More fluids in that fluids out to make sure some of them go through the kidneys and flush them of the poison. He’s saying that by way of letting me know how much worse it could be, how relatively easy I’ve got it. And he’s right.

I’m losing too much weight, and this period after chemotherapy isn’t going to help. I don’t anticipate being able to eat much while I’m this vaguely nauseated. There’s still nausea, but it’s like the pain you feel under a painkiller. You know that’s pain you’re feeling, but you’re not feeling it, you know? I know I’m nauseated, but I’m not feeling it, you know? I have a rotating pair of medications, with a third I can take on top if necessary. I’m using 12-sided dice next to the bottles to mark what time I last took any given medicine so I know how long until I can take it again.

So it’s a Saturday, which means no radiation therapy. I just got off the phone with my mother, who’s taking all this remarkably well. Christien is out at his son’s soccer game and the house is still. The cat is sleeping under the covers of my bed. He snores when I touch the bump in the covers. The dog is in the backyard desperately watching the squirrels in the trees. I let her in and she runs back to sprawl on the floor in Christien’s room, waiting for him to get home.

I’ve got Driveclub on the PS4, checking it every so often to see if it will go online. It’ll flicker online and then drop me as soon as I try to do something that involves being online. That’s not very online. I’ve got a game of Beyond Earth set up on the main PC and I’m playing it when I’m not checking Driveclub or working on a couple of articles. The Aliens review is about ready to go. I’m having a great time prepping Skylanders Trap Team to show Christien’s son next time he’s over here (Monday?). I even bought an armload of Skylanders from Gamestop yesterday and got to do that really fun thing of opening a bunch of packages. I think I really like what they’ve done with Trap Team. Try as I might, I can’t hate on Skylanders. Disney Infinity, on the other hand, hoo boy. I don’t really have it in me yet to write that review. It’s going to be pretty mean.

I just got a package from boardgame publisher Victory Point Games in the mail, which includes the latest expansion to Darkest Night, a game I really like playing solitaire. They also sent me Imperial Stars II, a two-player 4X designed to play in under an hour. I shall have to see if I can wrangle my voice to enlist someone to try that. It’s by the Chris Taylor who made Nemo’s War. Victory Point also sent me Snapgammon, a cow herding variation on backgammon by the guy who made Darkest Night. I love nothing so much as breaking down a new boardgame, dividing the pieces, and reading the rules.

Life is good. Very good. My main goal today – and really, it’s a modest and totally attainable goal – is to hydrate myself. I need two liters of water a day to keep flushing the cisplatin from my kidneys. I’m about a third of the way through today’s allotment. The problem is that it hurts to swallow. The tumor on the surface of my hypopharynx is getting shredded by radiation, as is some of the healthy tissue around it, and it all balks when anything brushes against it. The muscles I use to swallow are weakening, so it takes more effect. There are sores in my mouth from the radiation, including a particularly nasty one at the base of my tongue that rubs against my teeth. I have a name for that sore that involves the “F” word.

So what I have to do is take a mouthful of foul liquid lidocaine. It’s a numbing agent. I swirl it around my mouth, and then gargle it, and then swallow it. Everything it touches goes almost immediately numb. Then I can chug a bunch of water and eat some food without it hurting. Well, it’s like the nausea. I can feel it hurting, but I can’t feel it, you know? Medication is such a weird thing, detaching you from your body, putting you into some isolated corner of yourself.

“You stay over here,” medicine says, “and let me handle this.”

“But I’m not really comfortable giving up control,” I start to protest.

Medicine isn’t listening. It’s doing its job.

Also, I keep getting the hiccups. These are weird industrial strength hiccups. Some of them come in pairs. The first hiccup quickly followed by a bigger afterhiccup. hic HIC. What’s up with that? I love that my biggest problem right now is hiccups. Okay, time to choke down a swig of lidocaine, chug another couple hundred milliliters of water, check Driveclub again, help Africa dominate this alien planet, and break open some boardgames. Life is good and close enough to normal and I wish you could all be here for this great day I’m having.

-Tom

This has nothing to do with anything but your mentioning hiccups makes me think of my week old daughter. As do most things, at the moment, but she is getting these incredible hiccups very frequently. I put my hand on her little chest and I feel it just flex inward in a way that seems like it must hurt, but she just stares around, stoically handling these tremors. Anyway, glad to hear things are going well. I’m about to pop in Alien: Isolation, so I look forward to the review!

That’s adorable, Pogue! I think hiccups are normally kind of fun, and I can imagine to your daughter, it might be a bit like being tickled? I dunno. For me they’re annoying for how they yank my stomach and throat, both places which are kind of sensitive right now. But I think for other people, they’re just a distraction. I like to think your daugher is enjoying them!

-Tom

Another amazing update. Thanks for sharing it.

I’m using 12-sided dice next to the bottles to mark what time I last took any given medicine so I know how long until I can take it again.

Nerd.

Glad it’s going well.

So many things in that update, from the 12-sided dice to the multi-game rotation, remind me that this board is indeed home to my clan. Keep up the good spirits, Tom!

I’ve had chronic hiccups since the summer of 2010, or at least that’s when I finally noticed they weren’t going away. Fortunately, they’ve calmed down a bit over the past year, but I don’t think I’ve gone a day without them.

I asked my doctor in 2011, and he checked by x-ray if my ribs were impinging on my lungs, which apparently can cause hiccups, but that isn’t the case. He gave up after that.

Tom Chick: Life is good. Very good.
JeffL: (feels like an idiot for whining about what I was whining about earlier.)

On the chemo, and cisplatin, I actually led a team some years ago developing vectoring agents that took the cisplatin directly to the tumor, and kept it from going anywhere else. As you know, it’s kinda a poison, which is why it makes you so sick, and the trick is enough to kill tumor cells but not so much to kill everything else. We were successful for a bone cancer vectoring agent. Not so much for what you’re fighting off. Sorry. :(