Whipsaw!

I hardly slept last night. K and I had read up on squamous cell carcinoma (SCC), and it's just not appetizing literature. Today was the day I was to meet with oncologist Dr. Famous Squamous and see what was on the menu.

At 5:45, after about 2 hours of sleep, I got up with K, and we drove to Wicked Famous Cancer Hospital. We walked in, and the x-ray tech started an IV in my arm and injected me with that radioactive sugar I was talking about last night. Then, took a nap for maybe an hour. When I woke, my tumor had had time to suck up this delicious stuff, and I lay down for the scan. I don't remember that part, because I fell asleep again.

Then, K and I went home, and I slept. Shortly after noon, we drove back to Wicked Famous. In the car, I went over the notes I had taken on the treatment of SCC, guessing on what Dr. Squamous would probably have in store for me and what questions or objections I might have.

At the hospital, we were quickly put in an exam room. There, we sat for a almost an hour. (I'm not complaining. That would make me a hypocrite.) I actually got some work done, but, I mostly worried about what the next few months or years were going to bring. Those were not happy thoughts. Meanwhile, Dr. Otto La Ringologo, who had given me that distasteful diagnosis last week, kept poking his head in nervously, saying, "hi," and looking around.

Then, Dr. Squamous' very pleasant oncology fellow came in to take a history and examine me. I always enjoy sharing my medical history with oncology people for the first time. It makes their eyes bug out.

At long last, the eminent Dr. Squamous came in. I could barely restrain myself from peppering him with questions as we shook hands. I hadn't seen my him since my last cancer in 2005. He looked a little older.

His head was a slightly bowed, and he seemed almost rueful. He had a little smile on his face. Quietly, with one eyebrow raised, he spoke. "Before we go too far into treatment questions, we need to clarify some things. Did you see the pathology report?" I had. I have inside access. "Did you notice that there was a lot of description in it, but no definitive statement of diagnosis?"

I had noticed that. There were a lot of scary words like "dysplastic" and "invasive," but nowhere did it actually say, "squamous cell carcinoma."

He shook his head a little. "I'm not sure it is squamous cell carcinoma."

K's and my jaws dropped, and, suddenly, the Earth shifted.

"There are other things that could look like this, and when I talked to the pathologist, he refused to be pinned down. It could be squamous cell carcinoma, but it could be a fungal infection, or it could be osteoradionecrosis.* It's also odd that you are having no symptoms. I would expect you to be in a lot of pain with SCC at this stage. And, I looked at the films from the last few years, and there has been the same enhancement in the same place all this time. This year, it's a little bigger, but, if it's SCC, it's moving a lot slower than SCC usually does."

He told us that the PET scan showed enhancement only in the nasopharynx. That means, if this is malignant, there is no invasion of local lymph nodes, and there are no metastasis. That was kind of nice to hear, but I was barely listening by then.

The rest of the visit seemed like one long exhalation of relief as we planned next steps. I will head down to F'in Famous Cancer Hospital in NYC (a.k.a. The Big Fruit) and show my pathology slides to their experts. I will meet with a surgeon (yet to be pseudonymmed) down there to discuss whether she can do a procedure to get more tissue if the pathologists need it for diagnosis or if she is willing to go in and scoop up the dead tissue and let The Fixer patch it up with another piece of my thigh or something. That might prevent me from getting any more of those cheesy infections or from rupturing my brain lining when I laugh too hard.

Of course, we did go over the worst case scenario. If it is SCC, the only proven chance at a cure would be a big surgery and more radiation, neither of which are necessarily possible with me. Otherwise, there are some very harsh old chemo agents and some newer meds that are probably not worth trying unless I am in a lot of pain (which I definitely am not!) or having other symptoms. There are some clinical trials for newer medicines, but that would be a 'hail Mary' shot. That's what I have been sweating about for days, but, suddenly, it seems a bit less immediate now.

So, this cauliflower may yet turn sour, but it's very possible that it's only burnt. This adventure is not over, but it's starting to look like it will have one of those dumb plot twists where the protagonist wakes up only to find they dreamed the whole thing. Thank you all for coming along with me this far. Even if there is no SCC, I may end up having a big, nasty surgery in The Big Fruit, but everything just got a quite bit less terrifying.

Be well,

Tom


P.S. You would think I would have learned by now. This is the third time I have been whipsawed by Wicked Famous. The first time was in 2005, when, from the radiology, they thought my small, contained cancer from 2004 had returned and was going to kill me. It just turned out to be a silly old osteosarcoma that got all better after a giant surgery, tons of radiation, and a year of chemo. The second time was 2012, when they thought they saw a big tumor on my clivus, and it was just an infection that only required a month-and-a-half of IV antibiotics. This time, though, La Ringologo told me the pathology showed SCC. It may still be that, but wow. "Fool me once, shame on you; fool me twice, shame on me;" fool me three times, and I'm going to New York.



* a.k.a. supercalifragilisticradionecrosis! Osteoradionecrosis is death of bone due to radiation treatments. The entire irradiated area does not all die at once. More and more of the tissue in the radiation field can progressively die off.

How I Feel Right Now:

Another Big Day Tomorrow

You can skip to the main course if you just want to get the update, but I do hope you will have the salad and appetizer first.


1. Salad

First of all, before I get to the meat of recent events, I'd like to complain. Over the last few months, I have gained weight! What's with that? People with cancer are supposed to get skinny. That's the silver lining. Instead, I'm just getting one big fat cloud.


2. Appetizer

Second of all, before I get to the meat of recent events, I was prompted to make a very grumpy comment on Facebook yesterday at 1:30 in the morning. I'm not naturally a grumpy person. Quite the opposite, but I was having middle-of-the-night catastrophic ruminations (Why would I do that?), and I made the mistake of looking at Facebook. One should never do that after bedtime, but certainly never when one is feeling, ahem, a bit out of sorts.

I was in a closed Facebook group about science and health. People had been posting all sorts of nonsensical quackery on it. I had routinely posted skeptical comments, but I hadn't gotten around to taking myself out. Then came the last straw. Some genius posted something about how evil oncologists have been hiding the fact that a spoon of baking soda a day can cure cancer because cancer is caused by acid pH in the body.

This is complete hogwash on its face. Your body is quite good at maintaining a precise pH of 7.41 using the lungs and kidneys. I guarantee you that if you ingest a spoonful of baking soda, the contents of your stomach will become more alkaline, but your blood pH will not budge appreciably. If you somehow succeed in making your blood alkaline to the extent that your body cannot compensate, you will die. On the plus side, your cancer will die too.

So, I told said genius that he was full of dukey (in a more polite way). He responded that, since I am a doctor, I must know the baking soda cure and will use it myself. I was enraged. I don't get angry, generally, but I'm feeling a bit delicate right now. I didn't engage further. I did what I should have done months ago and left the group. I then made a grumpy comment about such things on my regular feed.

Anyway, the point is, unless you are well-informed about real cancer treatment, it is not wise or kind to boldly proclaim poorly researched opinions or to give medical advice to cancer patients. We are passengers in a plummeting plane. We're looking for parachutes. Don't go around telling us about the flying carpet you saw rolled up in the bin over row 7. And it is particularly insulting to me since I am a doctor. You are implying that I am a fool or a conspirator. As a doctor and multiple cancer survivor, I'm really good at finding parachutes (if I may say so myself). If there's one on board this thing, I'll find it.

Meanwhile, knowingly or not, you are steering less-informed patients towards quacks who will remove their money but leave their tumors. Then, these poor passengers may fatally delay the search for a parachute, or. in the absence of one, waste time. That time would be better spent calling home (or watching the in-flight movie).

OK. Enough of the tirade. On to the main course. It's a big one.


3. Entree

K and I (particularly K) have been buzzing like freaked out bees reading scientific articles and calling doctors in Boston and New York. First of all, we succeeded in getting my PET scan* moved from Sept. 12 to Sept. 8 (tomorrow). Then, we got them to move my appointment with renowned oncologist Dr. Famous Squamous** from September 13 to tomorrow afternoon. That way, I will not have to stew all weekend wondering about my prognosis and next steps.

Meanwhile, we have contacted members of my 2005 Dream Team in New York, neurosurgeon Mister Rogers, otolaryngologist The Coach, and reconstructive surgeon The Fixer. Unfortunately, they have broken up. The Coach as moved to Lummox Hill Hospital while the others remain at F'in Famous Cancer Hospital. I have an appointment with The Coach on September 28, and Mister Rogers got me an appointment with a hyperspecialty surgeon at his hospital on September 15.

Tumoriffic fans with good memories will note that Dr. Otto La Ringologo here in Boston did not think my tumor was operable without a high risk of disastrous complications. He may well be right, but K and I are stubborn. We are going to consult a few other luminaries before we give up on that option. It is just possible that surgery could, maybe, if I'm ridiculously lucky, rid me of this unappetizing cruciferous morsel.


4. Dessert

Meanwhile, in solidarity with my plight, Katie the Cat, hearing the word "cauliflower," vomited on the bedroom floor. Ginny the Dog then expressed her solidarity by gobbling it up.


Be well, my friends and family. Another exciting meal of mixed metaphors awaits tomorrow night.




* Despite the name, a PET scan does not involve being scrutinized by domesticated animals. The principle of the thing is that tumors consume sugar faster than nearly anything else in the body. So, I'm not eating anything before the PET scan tomorrow. That way, my whole body will be starved for sugar, especially my tumor. I will then have a delicious breakfast drink of radioactive sugar. My hungry little tumor will greedily suck it all up. I will then be rolled into a machine that will be able to detect the radioactive sugar, showing my doctors the shape of the tumor and whether it has spread to other parts of my body or my brain. If I'm lucky, this little last bit of radiation on top of the thorough cooking I have already have will finally allow me to tap into the hidden strength that all humans have. Then, don't make me angry.

** Dr. Famous Squamous is one of the leading authorities on head and neck squamous cell carcinomas like mine. It is rumored that they were named after him.

Me, in a grumpy mood.

The Other Drama on Friday, and Speculations on Next Steps

I've been cooling down a bit this weekend. Those moments when I suddenly realize you have a life-threatening illness never seem to get easier no matter how many of them I have. But, after a day or two, the thrill is gone.

I have had enormous help from family and friends. K, as always, is my rock, and I cannot count the ways in which she makes life livable. Same goes for Ben and my parents. One of my oldest friends, Talie, lives nearby and is a professional massage therapist. She has offered to come over with her massage table every so often and give me a free massage. She gave me one yesterday, and, for the first time since the diagnosis, I spent 90 minutes not thinking about cancer. Meanwhile, legions of friends and family have offered all sorts of help that we will certainly need as things progress. Dave, the chief partner in my practice, says he and the manager will do all they can to help. (I am very lucky to work where I do.) I have also loved all of the expressions of love and support on the phone, Facebook, e-mail, and comments on this blog.


1. Lost Cat
Friday was one of those moments I will carry with me for the rest of my life, just like the day NBC cancelled the A-team. And there was one more bit of drama to add to the mix.

Our cat, Katie, is an outdoor cat. We didn't want her to be, but she is stubborn even for a cat. By the time we got her from a rescue, she was already set in her ways, and when we kept her inside, she loudly and persistently proclaimed her outrage. After a couple of months, we caved.

I take Ginny the dog on long walks through woods or meadows several times a week. It's like a form of meditation for me, and it's a wonderful opportunity for Ginny to run around and sniff the urine and feces of various animals.* On Friday, I chose a route I could take without driving.

After we had gone some ways into the woods, I noticed that Katie was following us. She often does this during our short walks, but seldom on a long one. I don't like when she does this. It seems risky, and it's a long walk for a cat. But, as I said, she is stubborn.

At the top of the neighborhood sledding hill, there is a little neighborhood. As we got to a corner, a dog confined to a yard started barking at us. Katie would not pass the dog. So, we turned around. I intended to walk back home, but, at the other end of the street, someone else had put their dog out on lead, and that dog began barking. Caught between two barking dogs, Katie disappeared.

Ginny and I waited for her, but she didn't come back. Discouraged, we walked home. I felt terrible. I had lost a family pet! What a way to ruin a perfectly good day! (Sort of.) We got back home, and it was already dark. We expected the cat to come back on her own. She's very smart and tough. (She fended off a coyote once.) But, after an hour or so, she didn't come.

K suggested that we look for her, so, with little hope, we drove to the neighborhood on the hill where I had last seen her. Less than 30 seconds after we got out of the car, we heard a loud "MMMMMROWROWROWROWROWROW," and Katie ran to me. So, Friday could actually have been worse.


* I always wonder what she gets out of this. "Hmm. This is from a spayed female shepherd-golden mix, maybe 6 years old. Recently ate some Alpo and table scraps. Fascinating!"


2. Open Face Sandwich?

I'm speculating wildly here, but bear with me. So, it sounds like minimally invasive (endoscopic) surgery for my clivus cauliflower is out (or not, depending on how good a case the Pittsburgh surgeons can make). If they rupture an internal carotid artery or the meninges, I'm toast. I assume that is because there is very little space to maneuver and address emergencies when you're operating with an endoscope in my nostril. This stinks, because the best treatment for my carcinoma (assuming it has stayed local) would be surgery. But what about maximally invasive surgery?

The problems above would probably be less daunting with a conventional surgery. They flipped open the right side of my face like a door in 2005 and 2007. After the surgery in 2005, I had a hole in my meninges. They opened me up again and patched it with some fascia from the side of my head. (See http://www.tumoriffic.org/Part%20II%20chapter%203.htm, July 11 entry.)

Meanwhile, surgeons deal with nicked carotids all the time. The carotid endarterectomy is a common surgery for carotid stenosis (cholesterol plaques in the carotid), and they routinely clamp off a carotid artery, open it, ream it out, and sew it up. So, presumably, if they have room, they should be able to manage my internals.

This is idle speculation. K thinks I may a little naive. It would be very tough to put my face back together. It has been opened 3 times and fried with radiation. But, I want to hear what Dr. The Coach (http://www.tumoriffic.org/LLC.htm) has to say when I see him in NYC.


3. Just Say Yes to Drugs!

Then there are the drugs. I admit, I haven't done my homework on this yet, but there are options. Some options are out. For instance, if I have any more cisplatin, I will quickly become even deafer than I am. Cisplatin is the one that blew my hearing in 2005-2006. I'll skip that as long as I can afford to. However, there are other drugs including new immunotherapies that specifically target mutations in some papillary squamous cell carcinomas. Some sound promising. I plan to know more about this by the time I meet the oncologist next week.


4. And So. . .

Unless, by some miracle, there is a surgical solution, this is going to be a long slog. But, even so, there are promising possibilities. Lots of fun to be had, and inspiration for many Tumoriffic updates!

I Really Don't Like Cauliflower

Some bad stuff today. First off, the Lanes & Games, "Greater Boston's premier bowling alley" will be closing soon and will be replaced by condos. I really like Lanes & Games. I mean, in all the years I have lived up the road from it, I have only gone a handful of times, and I'm a lousy bowler, but, still, it has always been a comfort to know that it was there. Alas.

Second, the microwave. It's a brand new Bosch under-the-counter microwave put in during our kitchen renovation earlier this year. I was heating some asparagus, and, all of the sudden, smoke started coming out of the top of the microwave. I took the asparagus out, but the microwave was still smoking. As I write, the repair guy is here and recommending we replace it. Luckily, it's under warranty, and the asparagus was unharmed. I like asparagus.

But, third, there's the cauliflower. I really don't like cauliflower.


Cauliflower Gone Bad

This morning, I had my appointment with the second Clivus Brother, the ENT surgeon, Dr. Otto La Ringologo. As usual, K was there to take notes and be logical and supportive. Shortly after we entered the exam room, La Ringologo came in. He looked bad. His eyes were tearing up, and he was sniffling a bit when he walked in. Allergies, I suppose.

He was kind, but blunt. That cauliflower thing is cancer, and it's a bad one. Squamous cell carcinoma, stage T4. That means it's invading the tissue nearby. Specifically, the last bit of bone between my throat and the lining of my brain. Apparently, this is not good news.

Dr. Otto La Ringologo does not think that removing any more tumor by surgery is a good idea. It lives in a crowded neighborhood. If anyone tries to scrape it, they might knick a carotid artery or create an unpatchable hole in the lining of my brain so that all the fluid leaks out and my brain dries up like a raisin.


What to Do, What to Do?

Thus begins, not a mere pimple-popping, but an old fashioned Tumoriffic quest. In a week and a half, I will get a PET scan to evaluate the extent of the tumor and look for mets. (That's short for metastases. I don't mean the baseball team.) Then, I will visit the oncologist. There are medical treatment options. Lately, there have been some exciting new brews. But, I suspect, more radiation is right out given that the inside of my head is already deep fried.

While he is not sure it is the best idea, Dr. La Ringologo also told us that the best endoscopic (minimally invasive) ENT surgical team is in Pittsburgh. They would probably operate if I really wanted them to, but he thinks it's probably not a great idea. He may well be right, but it's worth going down and talking to them.

Also, at some point, I will make my pilgrimage to New York.  Although the prospect of going at this any way but through my nostrils makes most surgeons quail, I would like to see if any members of my dream team of surgeons from 2005 have any ideas.

I'll keep everyone updated. This may be the most exciting Tumoriffic chapter yet.


And, so. . .

Chances are, I will never bowl at Lanes & Games ever again.

A PET Scan:

Back at Work!

By the way, I forgot to mention the other day that I went back to work 2 days ago. After recovery from surgery, I actually feel better than before they popped my giant skull pimple.

Still waiting for final pathology.

Photo Having Nothing to Do with Above

Pathologists Refuse to Spit or Get off the Potpourri

This morning, I had my follow-up appointment with the neurosurgery half of the Clivus Brothers. There was a hard rush to get to the appointment on time, then the 2 hour wait. (Note that I would be a hypocrite to complain about doctors being late, and I'm really not going to complain about somebody who works very hard to keep me alive.*)

I had brought along a formidable posse. Not only did I have my wife, K with me, I had the Medical Mafia. My parents drove in to observe and contribute. Unfortunately, my father had to leave for a business meeting in Ohio before we left the waiting room, but I was still flanked by the two most powerful women I know.

A while after we were put in an examining room, the neurosurgeon, Dr. Prince Clivus, arrived and promptly paged the ever-pleasant infectious disease expert, Dr. Bug, to join us.


Report on the Surgery

During the surgery, it became apparent that much of my skull is the consistency of a creme brulee, and Dr. Clivus could have pulled off bits of it the same way one can pull that yummy crust off the custard. He restrained himself, but it was quite a mess. Above, there was the cauliflower, and to the side was the bag full of runny cheese I described in previous posts. In the back, was the tattered, infected remnant of my clivus, the bone that abuts the back of my throat on one side, and the lining of my brain on the other. Dr. Clivus scooped out all he easily could.


The Bugs

As I said last week, the bag of runny cheese and the bone are growing out all manner of weird nasties. The good news is that Dr. Bug already put me on antibiotics that cover all of them last week. Even better, these are oral antibiotics, so I won't be administering IV antibiotics to myself at home and work through a PICC line (a long term IV) like last time.

Depending on final results after pathology has finished marinating my samples in their herbs and spices, I may be on these antibiotics indefinitely. This does not sound fun, especially since one of them has the potential side effect of causing tendons to rupture. (I imagine myself taking one of my usual nature walks when a loud 'boing' echoes through forest as my achilles tendon breaks like a rotten rubber band.)

But it wasn't all good news. That unappetizing mush between my nose and my brain is a magnet for bacteria. Because my skull is a house of cards waiting to collapse, and a definitive reaming out of all of the radiation-burned soft tissue and bone would be a horrendous procedure with, I imagine, potentially unpleasant aftereffects like my face falling in, Dr. Clivus would undertake such a thing only under the most dire circumstances.**

So, the next step is to watch and wait. Dr. Bug was impressed that I had lasted 4 years without a second clivus infection. He thought it spoke well of Dr. Hygeia's*** rigorous regimen of daily nasal rinses and frequent visits to her for deep cleaning. I might be able to get away with putting off the big nasty surgery indefinitely with minor adjustments.


. . . But Wait! There's More!

Just as my mom used to force me to finish my cauliflower, life forces me to face the cauliflower that grew in my head. The pathologists still haven't finished with it, and I even asked that samples be sent to pathologists at other hospital, just for spits and wiggles.

So far, though, that cauliflower looks like a dysplastic squamous cell papilloma. In other words, a great big wart. (Honestly, I have no idea how that would get there. I have had a wart or two on my fingers, but, I guarantee, that I never got that far back picking my nose.)

Warts can be scary. Just as Pap smears may reveal a dysplastic papilloma will develop malignant parts if left alone, there is a possibility that my own papilloma has some cancerous cells (papillary carcinoma), and they could, potentially, spread. This would be no fun. (Actually, it would be a little fun. I would have lots of hilarious material for blog posts.) I am certainly looking forward to more scans in the coming months if nothing else, and, from now on, visits to ENT will be like a pelvic exam for my nose (rhinogynecology).


And So. . .

I leave you with a cliffhanger. I hope that the pathology will be mostly settled by the end of the week when I visit the otolaryngologist Clivus Brother (whose full name is to be determined later). It may be weeks before the pathologists at other hospitals, having gotten their shares of the samples, make final pronouncement. But that just means there is more Tumoriffic to come.

Be well,

Tom



P.S.: I forgot to mention this. A couple of weeks ago, I got a call from the radiology department in preparation for my MRI. For those of you who do not know, an MRI uses an immensely powerful electromagnet to make atomic nuclei wiggle in just the right way so that they emit radio waves that can be converted to an image of the inside of the body. (They can also be converted to music, but it always sounds like that pretentious atonal nonsense the Boston Symphony plays most of the time.)

During the MRI, you lie on a bed that rolls you into a long, skinny, coffin-like tube. For the next 45 minutes or so, you lie there as the machine clatters around like a hundred toddlers banging on cookware. Some people, understandably, find this anxiety-provoking. I, for some reason, tend to fall asleep. Thus, I think I'll be ready if I'm ever buried alive.

Because of this John Holmes of a magnet, you have to be very careful about certain types of metal that may be in, on, or around the patient. So, for example, if you're not careful, the MRI could pull your nipple ring through your back. So, getting to my point, my caller had a long list of screening questions to ask. She did not ask about nipple rings, but she did ask about any hardware that might be in my body. I no longer bother to mention the titanium screws in my skull (which are not loose), because it just freaks them out, and I happen to know that titanium is not 'ferromagnetic'--attracted to magnets. Also, she asked if I had a pessary. I assured her I would remove them when the time came.


* This is one of my pet peeves. By definition, medicine, and especially surgery, is unpredictable. We don't control the condition of whoever happens to walk in the door or what surprises may pop up. To make matters worse, we no longer control our schedules. Administrators do, so we often work under unrealistic time constraints. In medicine, there are very few who manage to stick to the time allowed, do a good job, and not annoy the patients.

** Dr. Clivus may, someday, have to take out my clivus. Given where it's located, I would think that would may my skull collapse so that my spine goes through my brain and I become a giant bobble-head. However, the clivus actually carries no weight. It merely protects the brain and its lining from whatever goes into my nose and mouth. No biggee.

*** As pointed out in earlier posts, Dr. Hygeia is goddess of ENT who is the primary care doctor for my nose.

Photo Having Nothing to Do with Above

Not Tumors, but Rumors

[I just sent this to Snopes.com. I hope it gets in.]

I have seen the following making the rounds on Facebook as of today. Please do not post it, especially if you don't live in Australia:


"I would like to highlight the government removing the subsidy for blood test strips. Diabetics need very frequent blood testing 5+ times a day. The cost of 100 strips is $70-$90. Outcome: reduced blood glucose testing and more hospital admissions from hyperglycemic or hypoglycemic (high blood sugar or low blood sugar) reactions... I am asking if everyone could put this as their status for 1 hour. I'm pretty sure I know the ones that will. Think of someone you know or love who has or has had diabetes. My hope is that in 2016 a cure will be found. Will you post it for 1 hour? To honor those who have fought or are fighting diabetes.😁. Hope to see it as yourstatus. Copy and paste, don't share.


This is posted as if it were about the United States' government. Our government does not subsidize diabetic testing supplies per se. Further, the post appears to be based on a misrepresentation of a change in policy of the part of the Australian national health system related to diabetes, the National Diabetes Services Scheme  (NDSS).

Patients on insulin are the ones who may routinely need to check their blood sugars multiple times a day. The NDSS is not changing the subsidy for patients who need insulin. Patients with noninsulin-dependent-diabetes-mellitus (NIDDM) do not all need to check their blood sugars. The NDSS would allow patients with NIDDM to get the subsidy at the recommendation of their physician. (For the policy, see here: https://www.ndss.com.au/important-changes-to-the-ndss and here: https://www.diabetesaustralia.com.au/news/15223?type=articles).

This is substantially more generous than in the United States, and, arguably, makes clinical and financial sense.