On not telling people things sometimes

The cancer patient in recovery, I've quickly discovered, faces a recurring dilemma about subsequent check-ups and screenings. Do you let people know that you're going to get something looked at -- and spread the worry around -- or do you spare them the anxiety if and until there's something to report?

Just this Thursday, I went back to Dr. Baker (my urologist), a mere week and a half after my post-chemo assessment from him. I was feeling a bit of ache in my groin, and, though it was hard to place, it was close enough to my surviving right testicle that I figured, "Don't be stupid don't be stupid don't be stupid don't be stupid asshole just pick up the phone it's probably nothing but you have to go in to be sure don't be stupid you were just there right but go in anyway it's rare to have a recurrence in the second testicle especially after chemo yeah but it happens so don't be stupid asshole you have to go in."

So, yes. I set up an appointment for Thursday afternoon. This was about a week ago, so I had several intervening days in which to obsess about any momentary sensation beneath my waist.

Dr. Baker had the dubious privilege of feeling around my ballsack for the dozenth time. He said that the testicle itself felt fine, that (as I thought) it'd be incredibly unlikely for me to have a recurrent tumor so soon after completing chemo, that since the pain seemed to be in the back, it was almost certainly an inflammation of the epididymis from exercise. He said I was smart to come in, though, should always feel welcome, and should call him if the soreness lingers past a few weeks.

So here's the thing: I didn't tell anyone about this appointment beforehand. Not friends, not my girlfriend, not my family. I thought it would be emotionally wasteful to get anyone worked up over nothing, especially since I only needed to wait a week to confirm that it actually was nothing.

I think and I hope that's the right way to handle this sort of thing.

Good Stuff: Jack Kirby's Fourth World Omnibus

My friend Jeff from work has been letting me borrow these, a collection of Jack Kirby's bugfuck insane galaxy-spanning DC comics series from the early early '70s. They are full of the unflagging multiple-exclamation-point enthusiasm ("How's that for a chilling conclusion, dear readers!!!") that the funny papers used to have in more innocent times and thick as clay with borrowings from far out sci-fi, fantasy, and classic mythology. I don't think Jack Kirby ever did a drug in his life, but as I read these stories I picture him popping speed and slurping absinthe with Wagner on the hi-fi and a pile of William Blake, Robert Heinlein, Alduous Huxley, J.R.R. Tolkien, and Joseph Campbell by his side.

Anyhow, the comics are hilarious and badly dated and over-the-top and often quite brilliant. Present throughout is Kirby's palpable affection for the young kids with their crazy ideas and damn rock music, which, coming from a man who was 53 at the time, is oddly sweet and touching.

John "a PC" Hodgman has a nice review of the whole set here.

Good stuff: Swedish pop gals

You must admire a culture that gives the world August Strindberg and Ingmar Bergman with one hand and ABBA and Max Martin with the other. (You must. Says so in the manual.) In the spirit of the latter two, here are some of my favorite performers from one of my favorite genres: impeccable, off-beat girly pop.


Lykke Li



Robyn


Annie

I testify from experience -- sticky awesome pop like this does serious damage to the chemo blues.

Good stuff: Toots & the Maytals doing Radiohead's "Let Down"

I like Toots; I like Radiohead. However, I would not have thought that these two flavors belonged in the same candy bar. (Indeed, when I heard about the album this comes from, I thought it sounded like the most inane and unnecessary cash-grab concept since the album that preceded it.)

Wrong. Here is Toots doing an awfully fine job on one of the better songs off OK Computer.



That voice! It's got authority, but such playful authority, if you know what I mean.

Bonus Toots:

So what's happening to me?

Eh! Not much.

And that's good, right?

We are keeping an eye on me. My next checkup is in early October, when we'll look at my lymph nodes again and make sure they're not misbehaving.

Meanwhile, I am back at work. Living life. Doing stuff. Making all the right moves. Later this month, I'll be attending a weekend retreat put on by Planet Cancer, a locally based support organization for young adults being treated for or recovering from cancer. I shall report back from that.

Thanks for asking!

Who is this lean and fiery orator?

Now that's how you do it. I guess JK had himself an espresso shot sometime in these past four years.

Is it ...? Could it be ...? REMISSION??

If you're still here, hi. I'm still here, too. I've been getting back to normal things like going to work and walking around and being seen in public, which accounts for the radio silence on this blog. But I thought an update would be in order, so here goes:

Well, I have been out of the chemo for a few weeks now. In that time, I have had a couple of tests to gauge the effectiveness of my treatment. Let's run 'em down, shall we?

1) There was a CT scan to check on my lymph nodes. The size of your retroperitoneal lymph nodes after chemotherapy for TC is pretty crucial information, obviously. Nonseminomous testicular cancer (what I have) has a nasty habit of leaving behind a benign mass called teratoma. Teratoma is not itself dangerous but a) it can grow, putting pressure on your organs, and b) it can become cancerous later down the line, creating a recurrence of TC -- and cancer is always much more dangerous the second time around.

Before this CT scan, I had to drink one of those loathsome barium sulfate "smoothies" that coats your stomach a provides better image quality. Fortunately, I had been so fully briefed on how disgusting this stuff would be that the actual taste, while horrible, was miles better than I expected. (In fact, I think it's the mucus-y consistency as much as taste that really grosses people out.)

Anyhow, the scan revealed that my lymph nodes had shrunk significantly from the chemo, returning to their normal sizes. There is one node, however, that is still inflamed to about one centimeter. This poses a bit of a problem, as some oncologists would recommend surgery in my situation (in fact, would recommend it for any residual lymph node swelling whatsoever) while others would advocate surveillance. Dr. Hellerstedt is in the latter camp.

Post-chemotherapy RPLND surgery is a pretty intense and difficult procedure. Only a few surgeons in the country have done more than a handful of these procedures. Frequently, nothing more than scar tissue is found in the affected nodes. Nevertheless, the surgery does offer some peace of mind by (in all likelihood) revealing that there is definitely no active cancer in the nodes and removing any teratoma that is discovered.

On the other hand, it's certainly preferable not to get the surgery if you don't have to. And Dr. H seems confident that I don't have to right now. (The story will change if we see my one lymph node growing in a subsequent CT scan rather than shrinking back.)

I'm torn. I've done my homework, and I know that many TC specialists think the post-chemo RPLND should be done in any case of residual node inflammation for the the slight increase in statistical long-term survival that is possible. However, surgery carries risks, and these must be weighed against the slightly increased risk of recurrence that comes with not doing the surgery.

I hope I'm laying this stuff out clearly. It's pretty late as I write.

Given Dr. H's confidence, I am pretty comfortable in moving forward with surveillance for now. That'll be CT scans and blood tests every three months for the first year, with less frequent tests in subsequent years. If something happens during surveillance that makes us think surgery is necessary, then we will we move forward with that.

Just to put my mind at ease, though, I am going to ask Dr. H to put in a call with Dr. Lawrence Einhorn at Indiana University. Dr. Einhorn literally wrote the book on modern TC treatment and is famously helpful in answering calls to consult with oncologists around the world who are dealing with TC patients. If Dr. Einhorn concurs with our current plan, then I will move forward with surveillance and consider myself unreservedly in remission from testicular cancer. (Hoot, hoot.)

So! Keep your fingers crossed.

Oh yes. There was another test used to check out my lymph nodes.

2) A PET scan. (If you have any interest, click that link, because this scan actually works in a pretty interesting way that involves injection with radioactive material.) This was done to look for any "active cancer" in my inflamed lymph node -- cancer that the chemo just plain failed to kill. This scan is not really super useful for patients in my position; it is known to produce a significant number of false negatives, and it does not reveal the presence of teratoma. However, Dr. H thought we should go ahead with it because a) my insurance agreed to pay for it and b) if it was positive for activity in the node, we would definitely think about doing the surgery rather than surveillance. Fortunately, the scan was negative, as we expected.

OK. That is all for now, cats. I will continue to post as things develop ... and may even start posting about non-cancerous subjects as I return to normal life.

Thank you to everyone who has taken a moment to express concern and send good wishes. It was all very much appreciated, and I apologize to anyone who I failed to respond to individually. I am in much better energy now and have no excuses, so drop me another line if you like.