Tuesday, November 1, 2016

AND THE ANSWER IS. . .

BENIGN!

B9!

Bee nein!

That's right! Today, K and I got an e-mail from Dr. B (now Dr. B9) that stated that the pathology from my recent surgery was "benign and reactive." Reactive means that the funky-looking cells were reacting to inflammation and infection. They aren't cancer. They're just funny-looking.

Wow.

Wow!

WOW!

I have had many false alarms since my original cancer in 1981. I have had several operations to remove things that turned out to be nothing. I have been told that I probably had a terrible cancer when I did not. But never, never, never before August, has anyone said to me so unequivocally that I had terminal cancer. But I don't.

Thank you, everyone for your warm wishes and encouragement. Thank you for your help and many more offers of help.

And thank you, Dr. Famous Squamous, Dr. Mister Rogers, Dr. Fixer, Dr. Agent Skully, Dr. Nariz, and Dr. B9. Thank you, everyone from work. Thank you Mom, Dad, B, Ginny, Katie, and, particularly, K.

There will be little updates about this or that, and, I am afraid, there will be other adventures. Radiation is the gift that keeps on giving, after all, and I have had a lot of radiation. But this particular adventure is OVER!



YES!!!




Monday, October 31, 2016

Big, Floppy, Throbby Halloween

Sitting on the train on the way back from the Big Fruit. The leaves are beautiful. This time, I came down all alone. K needed to stay home and supervise Halloween, and we did not expect any major news today. I stayed last night at R and H's house again. I got up early, got breakfast at a diner. Got a haircut, walked downtown and found I had gotten there 45 minutes early. So I had breakfast, part 2. When I told her this, K suggested I was becoming a hobbit. I guess I should have had the barber shave my feet.

Today, I was only seeing the surgeon, Dr. Nariz. Pathology is still cooking, so no news as to whether the cauliflower is cancer. It was just to check my surgical site for healing and to answer some questions. I had some. I had been obsessing a bit over the last week and a half about my left internal carotid artery. It's a strange fetish, to be sure. However, you might feel that way too if you had heard what I did.

After the surgery, while I was too groggy to remember anything, Dr. Nariz told Kathleen and my parents that my left carotid artery may have been exposed, or, to put it in ominous doctorese, dehisced. When I think of 'dehisced,' I think of a surgical wound popping its stitches. (See http://www.tumoriffic.org/Part%20I.htm for an example.)

The internal carotid artery is one of the most important blood vessels of all. It is one of the main arteries supplying the brain (an organ for which I hold deep affection). * Rupture the internal carotid artery, and that is the end of the game. So, I imagined a big, juicy, throbbing artery hanging out just inside my nose and waiting to be punctured by an unwary fingernail in search of a meal. It could get chapped when I ski or pop if I bore down too hard relieving myself. There has been no end to the creative nightmare fantasies I have had about this 

However, when Doctor Nariz looked for it today, he did not see it. He clarified that, during the operation, he and Dr. Skully had seen what appeared like it might have been a little bit of the internal carotid peeking out from a gap in the bone. They had checked it with a Doppler (ultrasound machine), and it had not looked like an artery, although they could not rule that out, and they were not worried. It looks fine now, anyway. There is definitely not some big, floppy, throbby, vulnerable thing hanging out on the side of my throat waiting to pop. It would have been an interesting way to go.

Anyhoo, the wound looks fine and dandy, or, at least as fine and dandy as one's internal face can look after a nuclear meltdown.

I hope that Wednesday's news will be more definitive. K and I will come back down and visit Dr. B. We hope that she will have the pathology report by then. We hope it will be good and definitive news. **

Be well,

Tom






* The carotid artery, like all of the blood supply to the brain, enters the circle of Willis. That's a name I cannot forget, because, "what you talkin' 'bout, Willis?!?"


-->
** Full disclosure: although I would be completely floored if this turned out to be cancer, I suspect that a definitive rule-out of cancer is not possible given my wacky tissue. They will just have to keep getting MRIs every few months forever. Oh, well. Beats being dead.



Attitude Bird

Friday, October 21, 2016

Post-Op Follies (What a bargain! Two Tumoriffic updates in just twenty-four hours!)

I sit now in a hospital room at F'in' Famous Cancer Hospital, recovering from the day's procedure. Shortly after I posted this morning, K, my parents, and I stepped out into the pouring rain to go to the hospital. (We left B behind to try and workout technical issues loading the just-released Civilization 6 onto his computer--definitely a better use of the time, in my opinion.)

The traffic downtown on Lexington Ave. was horrendous, and we got to F'in' Famous a bit late. We hopped into an elevator and checked in on the 6th floor. The preop nurses were extremely pleasant. 

The IV placement was, for me, the worst part of the whole day. The IV tech was quite good, but it took her two tries. I don't like needles to begin with, and I still have memories of the metal IV needles they had when I had cancer as a kid. You had to be really careful to avoid infiltrating them.* (Shudder!)

I was a little taken aback when I learned that due to my mild hearing impairment (I wear hearing aids) and my mild visual impairment (I wear glasses), I am technically considered at high risk for falls. (This seems a bit odd, since, yesterday morning, I was hiking around a hilly park with my dog, Ginny.) In any case, a high risk patient like me is not supposed to venture even to the bathroom without someone escorting them to make sure they don't fall. The patient gets a pair of New-Jersey-yellow tread socks instead of the standard gray ones they had already given me. That way, they can spot me if I wander out into the hallway alone and give me a shot of haloperidol so I behave.

Anyhoo, it was a very long wait to get to the OR. I would complain, but some poor soul was probably on the operating table way longer than expected due to some awful complication. Still, I was getting hallucinations from my acute caffeine withdrawal. (Slight exaggeration.) 

The anesthesiologist came by. I don't remember his name, but I think it was "Dr. Snooze." He explained how he was going to get an itty bitty little breathing tube through my practically unopenable mouth** so he wouldn't have to cut a hole in my neck for ventilation during surgery. I was quite grateful. I've had one before, and they're no fun after the novelty wears off.

Dr. Nariz came by, chatted, and met my family. He has a degree in public health, so is really my kind of doctor. He was followed by various others--house staff, OR techs, and OR nurses. It was like being on a receiving line at a wedding.

Unlike last time, they didn't dope me up in the preop area, so I got to be awake for the trip to the OR. As they wheeled the bed through the doors towards the OR, I waved to my family and made driving motions. Once in the OR, I got to see the 'skull clamp' (I did not make that up!), which looks quite medieval. Finally, the big moment came, and, wham bam, they injected me with midazolam. I told everyone that I enjoyed meeting them, and then, I was out. 

The team promptly put my head in the skull clamp. Despite the gruesome name, this is not some Torquemada toy, but a device to keep the head absolutely stable. For endoscopic surgery through the nose, they use the equivalent of a GPS device to see where they are. It's like a Google Maps for behind my face. You really don't want them to take a wrong turn.

It was a quick procedure. I think any barriers to the relevant area had been removed by the Clivus Dudes in August. (Maybe I should demand a discount!) It was probably no longer than a vanilla colonoscopy (or a chocolate one, I suppose). Dr. Nariz and Dr. Skully scraped out a little tomskull, and they were done. I was wheeled to the recover room.

Apparently, at some point after I woke, Dr. Nariz came by and asked how I was. He tells my family that I replied, "I feel like a million dollars--all green and wrinkly." (I stole that line from a comedian a long time ago.) I was still under the influence, so I don't remember. 

Gradually, I undrowsified. Once I proved I could drink apple juice without yorking it, K was allowed to let me finish the rest of her precious, precious coffee. Something clicked back into place in my brain. It took a while for a bed to open up, but one did, and the staff took me to the 7th floor.

It's pretty nice here. I don't have my own room, but my roommate is quiet, and, earlier, his rabbi was singing something in Hebrew, which was soothing. There are none of the announcements and beeps one hears at most hospitals.***

I easily persuaded my smart nurse that this fall precaution stuff was ridiculous in my case. All I had to do was show her I could walk around the unit and do the limbo, and the restrictions were lifted. Her successor and both of the nurses' assistants I have had so far have been very pleasant and professional, and a delightful NP came by. I posted the poem I wrote last night on my room's bulletin board, and several of them saw and enjoyed it. (See below ****)

The nutrition service finally brought me my first, and only meal of the day, an excellent dinner. (They do hospital food right at F'in' Famous!)

And, here I am, finishing this update from my hospital bed. I anticipate a relatively fast recovery. Unlike last time, they did not use propofol to sedate me. (Incidentally, Michael Jackson's doctor inadvertently killed him by giving him propofol as a sleeping medicine!) Propofol (a.k.a. 'milk of amnesia' for it's effect and its milky appearance) gets absorbed into the fat and then slowly leaks out over the next week or so. It takes a while to feel alright. Midazolam, which they gave to me today, is what many doctors give for colonoscopies. Half of it is gone in two-and-a-half hours. Much nicer!

Once I am out, there will be nothing to do but to wait for a while. In 1-2 weeks, they should have enough information to calculate the proliferation index. (See this morning's post for an explanation.) Then, they'll know whether any of the tissue they got is cancer. 

If they find cancer, they will send it off for testing to determine a treatment strategy. If they don't, it will be a great relief, but it won't be the end of the story. Unfortunately, the place that is the space behind my face will always be suspect. From now on, I will get more frequent MRIs, and, maybe, more frequent pruning of suspicious Chernobyl fruit back there. Years of fun ahead, but, if a misguided surgeon, using incomplete pathology, ever tells me I have terminal cancer, I'll try not to have a cow.

I expect this post will be the last one, or, at least, the last long one, until I get more news.

Be well,

Tom





* When an IV infiltrates or is infiltrated, the needle/IV catheter breaks through the wall of the vein, and the IV fluid leaks into the surrounding tissues. Usually, it's not a horrible problem, but it gives me nightmares.


** My chronic lockjaw (trismus) is yet another gift of my radiation therapy. Towards the end of my treatment, my jaw froze almost shut. I can eat solid food if I don't take big bites. It also brings me closer to some of my WASP ancestors who doubtlessly never spoke without their jaws clamped shut. (I actually had a teacher who talked that way.)

*** I'm going to take some credit for this one. When I was here in regular unit (not an ICU) in 2005, the medical director was an old friend and colleague of my dad's. At that point, not only was there plenty of beeping, nurses were called by broadcasts sent to speakers at the end of every patient's bed. A good night's sleep was impossible. My father's friend dropped in to visit, and I showed him this. He was appalled and set out to fix it.

**** 
The Night Before Surg'ry

'Twas the night before surg'ry,
And all through the ward,
The interns went crazy,
While the residents snored.

The pee bags were hung
By the bedsides with care,
While commodes were full-up,
Befouling the air.

The patients were nestled
All snug in their beds,
While Haldol and and Ativan
Calmed sundowning heads.

I finally thought I had time for a crap,
A water, a Snickers, a 10 minute nap,
When in my front pocket arose such a clatter,
I pulled out my beeper to see what's the matter.

Down to the station, I ran like a flash,
To see with dismay that my patient had crashed.
Roll in the code cart, get an EKG strip!
Get out the paddles! A dopamine drip!

So we shocked my old patient,
Three jolts, one, two, three.
The old fellow, he sat up,
And smiled right at me,

With a wink of his eye,
He leapt to his sleigh,
Signed a handful of papers,
And left AMA!

And I heard him exclaim,
Ere he drove out of sight,
Merry Christmas to all,


And to all, a good night!


['AMA,' in this case, is doctorese for 'Against Medical Advice.'] 





From my long walk with Ginny, yesterday. I am not a fall risk even though this is a fall picture!



Drum Roll, Please! (Written 10/20/16)

Well, folks, it's almost time for another nose-picking!

I'm back in the Big Fruit. The operation is scheduled for tomorrow morning.  I have been remiss in updating, so let's revew the events of the past few days and then get to the meat of the issue (so to speak).

On Sunday, the 16th, I stayed overnight at the home of the gracious R and H, the usual hosts for me and my family for these adventures. They live a short walk away from the F'in' Famous Cancer Hospital.

The next morning, K and I walked a few blocks to the office of Dr. Skully's partner in crime, and ENT extrordinaire, Dr. Nariz. Dr. Nariz is probably about my age. Very easy-going, but smart, and confident. He's seems to be the kind of guy I could have a beer with, although I wouldn't want to before an operation. We discussed the surgery.

K asked some intelligent questions. I've forgotten most of them. The thing that will stick in my memory is that Dr. Nariz reiterated the warning that there is a possibility that he and Dr. Skully could puncture my meninges--the bag of cerebrospinal fluid around my brain. In that case, the immense pressure of my over-inflated head I would propel me across the room like an untied balloon. He assured me that no, that wouldn't happen. I'd be pretty tightly tied to the table. I'd just make a mess.*

After we finished with Dr. Nariz, I went to meet a delightful internal medicine doc (like myself) for a preop examination. As she questioned and examined me, we commiserated about the atrocious state of electronic medical record systems. Then I got some blood tests and K and I took the train home.

After going back to work for 2 more days, I am back at R and H's home with K, B, and my parents. Earlier tonight, R and H treated us to a lovely dinner nearby. And here I am, typing in bed.

So, what's on tomorrow's menu? The good news is that I get to sleep in. I don't need to show up until 9:45 am. The bad news is that I am will not be allowed to eat breakfast.

I have a special plan. Nowadays, surgeons often mark in advance the location they are going to cut. This avoids embarrassing errors like removing the wrong limb and whatnot. I'm going to take it a step further. Taking a Sharpie, I'm going draw an arrow on the side of my face and the words, "this way is up." Other arrows, marked "enter this way," will point to my nostrils. My ears will be marked, "wrong way." This may be overly cautious, but you can't overdo safety. (This paragraph is a bald-faced lie.)

Then, we'll stroll or ride to the hospital. After putting on a stylish gown and getting an IV line (the worst part for me), a nice man or woman will give me some very special drugs, and my part will be over for a while.

Sweeping into the operating room in his special Supersurgeon disguise, Dr. Nariz will start off the nasal spelunking expedition, sticking his schnozascope into my nostrils, clearing the way for Dr. Skully. (Honestly, I can't imagine he'll have that much to do. Surgeons have been scrapig away back there for decades, and Dr. Otto Laringologo did more cleanup last summer. Is there really anything left between my nostrils and the base of my skull?)

Anyhoo, once Nariz has cleared a path to my skull base, Dr. Skully descends by ropes and pulleys through a trapdoor in the ceiling, and Dr. Nariz will drop through a chute in the floor. Dr. Skully will take up the schnozascope to scrape out some skull charcoal send it to Dr. Pokey and Dr. Droopy in the pathology department.

Here's what happens next. In addition to doing the same review on the last set of tissue I gave them, the pathologists will try to determine the "proliferation index" of the tissue they collect. This is, as I understand it, the ratio of cells seen reproducing (Perverts!) divided by the total number of cells seen within a particular part of the specimen. Normal tissue has a relatively small number of reproducing (dividing) cells in any given sample of tissue, hence a low proliferation index. Cancer has a lot more, so it has a high proliferation index. The higher the proliferation index, the more aggressive the cancer is.

If they do find cancer, they will then run the DNA tests that will show them what particular treatments might work for for it, and we're off to the races for a long run of Tumoriffic updates.

So, wish me luck tomorrow!

Be well,

Tom





* Honestly speaking, a meningeal leak is not as bad as one would think. I have had one before in 2005 when I was recovering from surgery in the neurological ICU at F'in' famous. It wasn't even uncomfortable--just very creepy. It really made the surgeons jump, though! They came in from their days off on a Sunday night and wheeled me back into the OR. Still, all they had to do was unscrew the top of my skull, push, my brain aside, and slap on a patch. No big deal!

On the other hand, if it happens this time, the surgeons will get much jumpier. This time, if there is a leak, they'll have to repair it using really long, skinny instruments and fiber optics or video to see. It's possible they'll have to open up my whole face.


Now, don't get your undies up in a bunch about this. It's not at all likely to happen. It is just the kind of thing that runs around in my head the night before surgery on my head.



And now, a puppy:

Friday, October 14, 2016

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?

Wednesday, October 5, 2016

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