Back for More Cauliflower!

Today's little odyssey was the usual frantic mess. We got up early (This time, we knew enough to make it extra-early.), and caught the morning Acela to the Big Fruit with time to spare. Once in the Big Fruit, we took the subway up and across town. Even so, we got very little time to eat lunch, and I could just cram down a croissant before we had to go in.

We saw Dr. Skully more or less on time, and I had a CAT scan lickety-split, but the MRI department was in hurry-up-and-wait mode. As a result, we had to trade in our tickets for a later train and barely made that. I'm not looking forward to going in to work tomorrow. Anyway, on to the guts of the thing.

Dr. Skully was her usual calm, pleasant self today as we went over plans for the surgery. It was kind of a rerun, since I had pretty much exactly the same surgery 2 months ago. (Yawn.) I signed several forms, including one that allows them to use any leftover pieces of my tissue for research. (Sloppy seconds.)

Dr. Skully told us today cleared up a lingering question in my head. Why, again, do we need to get more tissue? I remember what Dr. B told us. If it is cancer, it may take as long as two months to get a full diagnosis. Given its nasty location in my head, if I waited until I had symptoms to get another surgery, I would become a drooling, slack-faced, stumbling side-show act they would have to feed with a tube before they found the correct treatment. But I was still a little confused. Or, actually, I sort of understood once, but I needed someone to spell it out explicitly for me again. 

They expect to see dysplastic (doctor-talk for 'ugly') cells in area that has been irradiated as much as base of my skull has. That's nothing to write home about (or to bring to a tumor board meeting). But amongst these dysplastic uglies, there are clusters of cells whose "behavior appears locally invasive." That's a bit spicier than your usual Fukushima-face sandwich. If those invasive clusters are little islands of cancer, it's conceivable that I wouldn't be symptomatic yet, but I'd be in big trouble in the long run. They don't think that's what they are. They could be normal for my more-radiation-than-anyone-they-ever-heard-of face, or they could be normal for that face with an infection (which I did have at the time), but they don't know. I don't know. We need to know.

So yeah. Let's do this thing!

Be well,

Tom

P.S. Years ago, I shopped my original Tumoriffic saga (see Tumoriffic.org) to a book editor. She said it was too hard to follow. Really? It's a lot easier to follow than James Joyce! I was going to add that James Joyce wasn't funny, but my English major wife corrected me. I guess I just didn't get the humor when I read it in high school.

Totally irrelevant, but who could say 'no' to a baby sea lion?

Oncologist Says, "Don't Have a Cow, Man!"

I should be used to this by now, but I'm just not. I freaked. K freaked. My parents freaked. B was quiet (13 year old boys can be unreadable). Ginny the dog knew we were freaked but not why, so she just looked sad and licked us. Katie the cat was unimpressed.

But, the morning after we got the new Droopy and Pokey's pathology report, the ever valiant K got right to work. Lickety-split, she got me an appointment with the recommended oncologist at F'in' Famous Cancer Hospital (Dr. B*) for two days later (today).

In the morning, we had to rush to make the train for the Big Fruit. For once, it was K's fault. (Alright, I was only 30 seconds ahead of her, but I have to celebrate when something like this happens.)

When we got the station, we couldn't find a parking space. With time running out, I ran into the station alone. I promptly got on the wrong platform. If I had gotten on that train, I would have been headed north, which wouldn't have helped anything. Luckily, K found a space fast enough that she was able to save me from my own cluelessness, and she yanked me onto the other platform, leaping over the rails in a single bound (not really, but I know she would have if she had to).

Once on the train, I tried to catch up on sleep, but there was a big-mouthed troll yelling and slobbering into his cell phone for the whole trip. Quiet car next time!

At one point, as we pulled out of the station in a desolate Connecticut town, the train stopped. The conductor announced that a freight train had derailed in the Bronx, and we would have to wait while they cleared the tracks. Internet search revealed that the accident had released thousands of wild Pokemons that had been bound for New Haven. K produced a bloodcurdling roar of frustration. (OK, not really on the Pokemon part.) We contemplated taking the train back north and driving, but we wouldn't get to the appointment on time. Somehow, though, Amtrak figured out a work-around, and we were moving again after not too long.

We arrived in the Big Fruit an hour and a half later than planned. However, K had, wisely, made sure that we had plenty of time to get across town for my 4:15 appointment even if we were late. However, she had left so much time that she let me persuade her to walk to there from the station. That's 7 avenue blocks and 31 street blocks. I really wanted to look at the brand new 432 Park Street Tower.** It's taller than the Empire State Building.

I don't think I'll do that again. The building is a priapistic monstrosity.** On top of that, as we progressed, it grew late. We tried to hail a cab. Not realistic. As I should have remembered from my time living there, the taxis all change shifts between 4 and 5, and a lot of them don't want to pick anyone up after 3:30. So we ran the rest of the way, making it to the registration desk at 4:16. By that time, the oncologist had already left the station with her other passengers. . .  No. Actually. No. I'm thinking about trains. We got there and waited.

We didn't see the doctor until 5:32. (Actually quite a bit longer than my patients had to wait yesterday, but no big deal. And, to be fair, they did vitals, and her nurse came in and asked a lot of questions first.)

Anyhoo, in walks Dr. B. She cut to the chase. "Look, man," she said, "don't have a cow. Yeah, the pathology looks ugly, but let's face it. You're ugly. Especially on the inside. Don't take that the wrong way. I just mean that you've had more radiation to your head than anyone I've ever seen. You're a human Fukushima. Dude, no one knows what to make of that funky junk sitting behind your nose. Yeah, yeah, I know. It could be a squamous cell apocalypse, but those move really fast. If this were a big squamous cell carcinoma, I would expect that it would have gotten through to your cranial nerves by now, which would be truly gnarly. They said it looks like squamous cell carcinoma, but there are a lot of other things that can look like that. Basal cell carcinomas, adenomas, bubbanomas, and, of course, regular bits of your skull charcoal. Radiation induced cancers move fast, so my bet is on charcoal." (OK, so she actually sort of said most of that, but much much much more appropriately and professionally. But you get the jist.)

K and I breathed a sigh of relief. We rewound our emotional tapes to before the scary path report came out.

Dr. B continued. Basically, on the chance that there is something awful in there, she wants the testing to start ASAP, which means another operation. I had thought that, since there is no cure, it is not worth doing anything unless the tumor 'declares itself'--advances to the point where it causes symptoms. But, as she explained, those would be pretty awful symptoms, because it would likely first hit the cranial nerves. The cranial nerves are what allow you to see, hear, smell, swallow, chew, and various other things such as waggle your eyebrows suggestively at your wife. Also, at F'in' Famous, they want to do much more complicated testing than they did at Wicked Famous. The results take 6-8 weeks, and she wouldn't be able to start the best treatments until she knew the answers. I really wouldn't want to go that long without waggling my eyebrows at K.

And, worst case scenario, if this is squamous cell carcinoma, it is true that the only standard treatments are life-extending, and not curative. But some patients' lives seem to be extended indefinitely as long as they stay on treatment. And there are some very promising treatments just over the horizon.

Obligingly, Dr. B spoke to my parents on speakerphone, answering all their questions.

Much relieved, although not completely worry free, we left the appointment. I have seen a lot of excellent doctors in some of the best hospitals in the world (and in some ordinary hospitals). This was a superb doctor. She gave us as many details we wanted. She gave us the good and bad scenarios, the approximate probabilities of each, and possible plans for them. We left the office with clear next steps. Dr. B dealt with the whole family with confidence and kindness. That's how it's done.

We had a little more excitement. Dr. B took her time with us, for which we were grateful. However, it left us with very little time to make it to a 7 o'clock train. We took a cab this time, but, closer to the station, the traffic was so jammed, we got out and ran. We made it. I'm writing from the train. (The wi-fi is fast enough to do this, but, luckily, not fast enough to do work.)

So, we have a plan. Another surgery, this time in the Big Fruit, ASAP. A 6-8 week wait, and then, hopefully, free and clear before Christmas. (Or the squamous obscenity shifts into high gear, one side of my face goes completely slack, and I go blind.)

Sorry for the roller coaster ride. It's enough to shake lose a kidney stone, but I think that maybe the roller coaster might just smooth out into a regular train trip home.

Be well,

Tom


* I haven't figured out a pseudonym for Dr. B. Her name actually means 'saint' in a foreign language, but 'Dr. Saint' is a little melodramatic.

** I have an original idea! Let's take the most boring shape and color for a building and make it really big. In fact, make it YUGE! It'll look like a giant, low budget 1980s office building! Yuck!

Ginny and her friend Iris

Early Cancellation Cancelled

Good news! This Tumoriffic series will not be cancelled for the foreseeable future! Bad news! At least, provisionally.

The pathologists Droopy and Pokey, after a firm talk from Dr. Skully, put out their doobies, washed their hands and got to work.* They have pronounced my cauliflower "suspicious for invasive squamous cell carcinoma." (Gee, guys, if you can't say something nice, don't say anything at all!)** This is a lot firmer than the Wicked Famous Cancer Hospital pathologist's "lots of grody stuff" reading.

So, what's on the menu? I anticipate a return visit to Famous Squamous! And, just maybe, a visit to Dr. Zap, the radiation oncologist who burned out my skull last time! And, at some point within the next few weeks, we will return to the Big Fruit and meet a shiny new oncologist (alias TBA)! Maybe they'll talk me into more surgery, and I'll get to see Dr. Skully again. I really don't want surgery, but she was a very pleasant person, so there's that.

And, if the surgery turns up bad news? No mere squeamish cell farcinoma?*** What does that mean for you? More untold Tumoriffic adventures! More hair-raising (and, perhaps, hair-losing) escapades! More side effects! Maybe some exotic infections! Chemo like you've never seen! It's gonna be YUGE!****

Be well,

T

* I really am just joking when I make fun of pathologists. They're highly valuable professionals. I admire them! Heck, some of my best friends are pathologists!

** Yeah, yeah, I know. This is the opposite of what I was saying early early this morning, but, hey, a guy gets to be inconsistent sometimes.

*** Geeze, Blogspot! Not only have you still not figured out that "squeamish" is a real word, you haven't learned "farcinoma." Yes, I invented it just a few days ago, but it's trendy!

**** Really, Blogspot? You recognize "yuge," but you don't recognize "squeamish?"

Two living muppets to lighten the darkening mood

Stop Teasing Me!

I am really tired of this! Will someone please tell me whether I have an inoperable tumor that will probably kill me in 2 years? I mean really! It has been 2 months since my surgery! Actually, I don't think anyone actually thinks that what's going on anymore. I still don't feel sick at all, which is a bit odd if I have had a highly aggressive tumor eating its way towards my brain since July.

Anyway, I really would like some answers. If you remember, we were led to expect that the pathologists at F'in' Famous Cancer Hospital would have a clear ID on my possible tumor a week and a half ago. At the last minute, they let on that they were kidding, and they needed another week to figure it out.

Finally, 3 days ago, Dr. Agent Skully's nurse called. Skully had had enough. She stomped down to the Pathology Department to get some answers. She burst in on Drs. Droopy and Pokey. They were smoking a joint and getting hairy hands. She was outraged. "THIS IS THE LAST TIME!" she said. "NO MORE WARNINGS!" *

Chastened, the pathology slackers got to work. The very next day, K was contacted by the administrative assistant in Dr. Skully's office. She finally gave us the answer. . .






PSYCHE! **






It turns out that Dr. Skully's administrative assistant is actually a Magic 8-Ball. She told K that next week, the brilliant doctors at F'in' Famous will put their heads together and come up with a plan. So K asked, "does that mean that the pathology is finally back? Does it mean that Pokey and Droopy have finally taken their thumbs out of their ears and come up with a diagnosis?" The Magic 8-Ball said, in so many words, "reply hazy. Try again later."

My best guess is that they don't have a clear diagnosis. They're going to want to go in and get more tissue. They will have to persuade me that this will somehow make my life better. After all, if the options are either:

    1. I have an inoperable tumor for which the non-lifesaving treatment is only worth starting if I become symptomatic, or. . .

    2. I have my skull is turning to cinder, which is, somehow, not a big deal.


If those are the only the options, why should I submit to yet another exceptionally unpleasant nosepicking? If it's cinders, it's cinders. If it's a squamous cell carcinoma, it will declare itself soon enough when I start hurting. Knowing one way or the other would not help me live any longer, so I would see no point in another surgery. After all, I have a family to enjoy, and I hate to stand up all the patients who have appointments with me in the near future.

But my bet is that there is a third option. Perhaps they are thinking that it may be cancer, but something not so aggressive. Let's say, a squeamish cell farcinoma.***  If there is something useful to be gained by picking my nose, then, I will tell them:

You want a piece of me? Well go ahead!

Be well,

Tom





* I am fairly sure that isn't really what happened. I'm just feeling a bit harsh right now. I am sure that the pathologists in two of the world's leading hospitals are first-class doctors. They have taken so long to get answers because my tissue is weird. A clivus specimen from a guy who has basically spent months with his head in a microwave (twice!) is just not something you see every day.

** Does anybody say that anymore? Or have I completely descended into old fartitude? Remind me to ask B.

*** Blogspot spell-checker has underlined squeamish. Really, Blogspot? I understand not recognizing farcinoma. I just made that one up, but you don't know that squeamish is a word?

A picture that may or may not have anything to do with this post:

You want a piece of me?!?

Are We There Yet???

A little snack while we wait for the big meal:

Today, K called Agent Skully's nurse to chat and got a little surprise. Dr. Skully had hoped that the pathologists at F'in' Famous Cancer Cancer Hospital would have identified my little surgical scraps by now. Then she could meet with other experts on Monday and give us a plan by Tuesday. However, the little bits of my tumor on the slides that we so lovingly carried to my appointment went to the inboxes of Dr. Pokey and Dr. Droopy in the Pathology Department.* This means that, until late next week or even the following week, there may be no ID on that crud they dug out of my face in mid-August.

I still don't know whether I am facing (or the back of my face is facing) a terrifying, potentially deadly tumor eating its happy way towards my brain, whether my skull is just turning to powder (which is, surprisingly, not such a big deal), or whether I need another operation to decide (which would be a real laugh riot). I realize that suspense makes for a good story, but I was hoping for a short story, not a novel.

Thus, for the next week or so, every time I get a little headache, or a tickle in the back of my throat, I will get really paranoid that something like Miss Muffet's spider is wiggling around inside my head. And it's fall allergy season.

Be well,

Tom



* Perhaps I am being a bit harsh here. Drs. Pokey and Droopy may need to use some extra special herbs and spices on my li'l' bits, but the ones from August are already too processed. Without these preparations to bring out the flavor, maybe it's hard to tell the difference between blackened Cajun bone scraps and a carcinoma souffle. Dr. Agent Skully may need to go in and nibble off another piece. Yum.

This picture does have something to do with this post:

Warning: Prostate Meds and Cataract Surgery Do Not Mix

Enough about me (at least until next week or if I pop another tumor before then).

If you don't want to read the details, here's the gist: if you or you family member, or your patient is on one of several common prostate medications and has cataracts, think hard before considering corrective surgery and make sure your ophthalmologist knows about the medications. It could mean the difference between sight and blindness.

Today, one of my patients asked me to share this story.

An eye doctor diagnosed Mr. X with cataracts. Mr. X's vision was OK. The cataracts were not really bothering him. However, he had surgery to get the cataracts removed.

Mr. X was on prostate medication. Specifically, he was on alfuzosin (Uroxatral). This medication keeps the prostate from getting too swollen and can be very useful. However, it can also cause Floppy Iris Syndrome. (And no, even though it sounds like something I would do, I did not make that name up.)

Floppy Iris Syndrome is a loss of tone in the muscles of the iris. Patients with this syndrome can have sight-threatening complications during cataract surgery. Floppy Iris Syndrome appears to be irreversible, so patients are vulnerable during cataract surgery even decades after the last pill they took.

As many as 15% of patients on alfuzosin who have cataract surgery may have complications related to Floppy Iris Syndrome (although not always severe). With a related medication, tamsulosin (Flomax), it may happen as much as 90% of the time. Mr. X was on alfuzosin, and he had the syndrome. His surgery did not go well. He may lose his sight.

With proper precautions, an experienced surgeon may be able to reduce that risk, even with tamsulosin, to 0.6% (6 in a thousand).

So, the take-home is that some prostate medications and cataract surgery are a dangerous combination that should be avoided except with serious sight-impairment. Anyone who needs cataract surgery and is on these meds needs a first-rate surgeon who knows they are on the meds and will take proper precautions.

Be well,

Tom

PS: A med school classmate provided useful corrections to this post after it was published. Many thanks.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2814568/

The Cauliflower Show Goes on the Road

I got to see two doctors in two days this time! It's kind of like a surf'n'turf dinner, or, maybe, a pasta dish and an entree.

1. Appetizer

Good evening tumor fans! K and I are on the train, returning from a worldwind trip to the Big Fruit and F'in' Famous Cancer Hospital. Brings me back to old times and my last big tumor. Oh, sweet memory!

As faithful readers will know, on Friday, September 9, Dr. Famous Squamous walked us back from sheer terror to mere concern, telling us that the cauliflower in my head is probably not the scary papillary squamous cell carcinoma, but the creepy-sounding but less dangerous osteoradionecrosis (known as ORN to cool people, or, to me, as a squeamish cell tumor). However, the pathologists at Wicked Famous Cancer Hospital continue to be coy, refusing to be pinned down on whether this is cancer or just another manifestation of the little Fukashima inside my head.

After work on the 13th, we hopped a train down south. As always, we stayed in the home of our generous friends, R and H, who live conveniently close to F'in' Famous.

2. Pasta Course

On the 14th, K and I hiked downtown for a reunion with the warm but suave Dr. The Fixer. Dr. Fixer is the reconstructive surgeon who expertly reassembled the right side of my face in 2005 only to watch it melt like a Hershey bar in the sun under the proton beam of Dr. Zap. That still irks him. He also had to repair me twice more in 2006 and 2007 when my cheek fell open.* Good times! Anyway, I am the patient that refuses to go away.

On the 14th, our question to him was simple. If the cauliflower turns out to be squamous unstead of squeamish, and if we can sucker some poor surgeon into taking the whole thing out, can he put me back together? Unfortunately, the answer is no. The cauliflower is in a really bad place, and you just can't get there from here.

The good news is that Dr. Fixer has seen a lot of ORN, and the MRI and CT of my clivus look like ORN to him. The other bad news is that I have a whole lot of ORN, not just in my clivus, but in my sphenoid bone, particularly on the right. The sphenoid comprises two big wings of bone on either side of the clivus.**

After that, we took the subway to Greenwich Village to lunch and loiter with my dear friend J, another of the ever sympathetic and helpful Tumoriffic stalwarts. On the subway, however, we overshot the meeting place. K was uncharacteristically grumpy about it since she was very hangry. Don't make her hangry. You wouldn't like her when she's hangry.

Later, K and I hiked across Central Park and cabbed uptown to have dinner with my cousin and cousin-in-law A and D at a wonderful Italian restaurant. I don't remember the name, but it was something like "The Meningococco."

Afterwards, we walked to their apartment to say "hi" to their kids, J and P, and their dog, Charlie. Charlie was so happy to see us, he peed on the floor. He never does that anymore, so we were flattered.

3. The Entree

Finally, early this afternoon, we hiked back to the main campus of F'in' Famous to meet the eminent skull-base neurosurgeon, Dr. Agent Skully. She was soft-spoken, but impressive, and her eyes bugged out only a little when we discussed my history.  She looked at my films, and I gave her my delectable pathology slides, which she promptly ate. (Just kidding.)

Not being an old friend like Dr. Fixer, and, thinking of the recent premature diagnosis, she was a little reserved, not committing to what she thought was going on with the cauliflower. She was logical and methodical. Nothing can be decided until Pathology has spoken. F'in' Famous is about 10 times larger than Wicked, so they have seen a lot more weirdos like me. If anyone can make a diagnosis with these slides, they can. It will take them 7-10 days. After that, Dr. Skully will present my case to her colleagues in a weekly conference known as Tumor Board. ***

If even the F'in' pathologists cannot come up with a firm diagnosis, Dr. Skully wants to go in through my nostrils and nibble off a bit more crud so they can subject it to more tests in the pathology lab. If, on the other hand, the crud turns out to be squamous cell carcinoma after all, she has not excluded the possibility of doing an open procedure like I fantasized. She would have to discuss it with another surgeon from ENT, and she would still have to pursuade Dr. Fixer that it was somehow possible to put me back together, but I can dream.

Meanwhile, I think I will need to be on antibiotics for a good long time. We'll discuss it with Dr. Bug, but that's my guess. Maybe I can breed my very own uber-antibiotic-resistant bacteria on my own clivus.

4. Dessert

Once again, I had fun with the pre-visit questionaire. Mostly in my head, not on paper. I don't want them to call a psych consult on me.

What is the most important thing our staff can do for you today?  Keep me from dying.

Are you unable to care for yourself and have no one to help you?  Only when my wife goes on a trip.

Where was your last fall?  I spent it mostly near home. I tend to travel more during the other seasons.

Do you use oxygen at home?  Of course I do! Where the smell do you think I live?!? Neptune?!?

Would you like to talk to someone about talking to your minor children aboout cancer?  I find that offensive. I consider no child minor! Children are major!

Who do you live with?  You mean WITH WHOM DO I LIVE. This is supposed to be a renowned cancer center! Get your grammar right, you losers!

5. Digestif

The next menu should be out in about 10 days when we have heard from Dr. Skully. 

By the way, if this story were fictional, I would consider the author to be pretty lousy. I really doubt that I have squamous cell carcinoma. We're just making absolutely sure. 

If this were well-written, the conversation with Dr. Squamous would take place far later so that I could spend more of the story in terrible fear. On the other hand, what if George R. R. Martin wrote it? Just as we thought things were going to resolve for the better, Ramsay Squamous would suddenly appear, and every knows what happens when Ramsay Squamous shows up!

Stay away from my story, George R. R. Martin. You have better things to do. Like finishing the Song of Ice and Fire series already. Seriously, man, get to it!

Be well, 

Tom

* If anyone's counting, he actually patched my up twice in 2005, once, after Dr. The Coach and Dr. Mister Rogers scraped out my osteosarcoma, and, again, two days later along with Dr. Rogers after my meninges (brain lining) sprung a leak.

** The sphenoid houses the sphenoid sinuses.  (If you guessed maxillary sinuses, you're a dummy.) The shape of these determines different degrees of resonance in singing voices such as, for instance, Luciano Pavoratti and Bob Dylan. As time passes I will sound more and more like Bob.

*** I have been the star of many tumor boards in many hospitals. In those venues, I'm like a medical version of Hamilton!

Photo with No Apparent Relationship to this Post: