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.
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.
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.
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.
[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).
It has come to my attention that the word 'tumoriffic' is being used by another cancer patient. His name is Keefer Peterson, and he lives in Omaha. He has Hodgkin Lymphoma.
Keefer does not have health insurance. In retrospect, he realizes that was not a great idea. He has made a Gofundme page to raise money for his treatment. Therefore, I request that anyone who read this please go to his Gofundme page. Give him money, and maybe give him a little bit of a hard time for using the word. https://www.gofundme.com/2ctlmh8
The head cheese is growing a dog's breakfast of microbes of all shapes and sizes, including yeast, so I guess it's cheese bread. The only bug fully identified is Enterococcus faecalis. Believe me, I have no idea how that one got up my nose. Feh! Surprisingly, the infectious disease people have not put me on antibiotics yet. I guess that's good news. It will take time for all of this to finish cooking, so more later.
The cauliflower pathology is still pending. Lots of squamous cells like you would find in skin or scars. They're funny-looking, but none have appeared malignant so far. Yum.
The achiness and propofol hangover from surgery continues to provide me with food for complaint, but I got some more morsels yesterday when my back went out.* I'm still trying to figure out who the god/goddess of the clivus is so I can sacrifice some cattle to him/her, and now I also have to find the diety of the lower back (or, perhaps the demigod of L5-S1).
*Find a penny. Pick it up. All day long, you'll have excruciating sciatica. --Me on Facebook
The surgery was unexpectedly easy. Although my nostrils are normal to even small, once you stick the endoscope in there, it's bigger on the inside*--like walking into a cathedral, relatively speaking, except with mucus. My previous surgeries obliterated my sinuses, etc., so, on the right side, there's nothing but air between my cheek and the outside of my cranium. For an endoscopic surgeon, it's like cheating. So the operation was over, lickety-split.
When I woke up, after the initial fogginess, I felt great. I had no pain. I was hungry, and I had energy. That's when I Facebooked that picture with me and the clock showing how good I felt so soon after the surgery.
That was a bit premature. Shortly afterwards, the fentanyl wore off. They had to put my head in a special position for quite a while to do that surgery, so my head and neck feel beat up, and my throat is a little sore.
Then, the propofol kicked back in. Roughly speaking, there are two basic types of medicines--water soluble, and lipid soluble, like balsamic vinegar and olive oil. In general, the water-soluble meds mostly stay in your blood, and when they stop pumping them in, your kidneys or liver get rid of them, and they are gone. The lipid soluble ones get absorbed into your fat, so once they stop pumping them in, they may wear off temporarily, but then they leak back in from the fat. So, after I sent that picture, the propofol kicked back in like a hangover, and all I could do was sleep for a while.
Still, not a bad deal for a surgery. Just one step up from a vanilla colonoscopy.
Now for what they found in the Cathedral of St. Snot. There is scary news and reassuring news, and it's all about food. The scary news is that there was something in there that looked like a cauliflower. The cauliflower is a vegetable that frightens doctors in the same way the apple is our fruity nemesis. Cancers can look like cauliflower.
However, the reassuring news is that beyond the cauliflower was cheese (or, as we doctors call it, caseous material, from the Latin for cheese). Cheese smells strongly of infection, and, in this case, there is nothing I want more than an infection. That, generally, can be cured. Probably, the cheese is a more important than the cauliflower, which is exactly what you tell your kid when you serve it to them.
The dish was examined more closely. The surgeons took a couple of bites and sent them to be frozen, sliced, and examined. They did not find any malignant-appearing cells in the cauliflower. The cheese looks like an infection, or, maybe, smoked gouda. However, I am not yet breaking out the champagne. As grandmother used to say, "it's not over until the pathologist sings."** The pathologists will soak my cheese and cauliflower in their special blend of herbs and spices for the next week or so. Only then, will it be (mostly) safe to come to a firm diagnosis.
Of course, this will only be the aperitif for what will be a longer meal of either antibiotics or cancer treatment. We'll have to wait for what the chefs have coming.
*Acccording to The Doctor.
**She didn't really say that, as far as I know, but she was a doctor and had a good sense of humor.
And for a nice recipe for cauliflower and cheese, click here: https://www.reference.com/food/easy-recipe-cauliflower-cheese-31cf2f7dbb153c36?qo=cdpArticles
Currently, I'm doing the evening dose of the 10 minutes of nebulized nasal steroid I do twice a day. B just came up to me and counseled. "Dad, as soon as you're done with this, you've got to sleep." The kid's got a point.
The maniacs at Brigham want me to show up at 5:30 tomorrow morning for surgery at 7:30. This further reinforces my conviction that medicine is run by a conspiracy of morning people who believe that this early bird preference of theirs is some sort of virtue instead of a physiologic trait and mental derangement. Harrumph.
In other news, I was very upset this afternoon to discover that I have dandruff. Have to do something about that.
Also today, although I did not see any other patients, I did hold my usual every-other-week group appointment for recovering addicts. For that one activity, I am pretty hard to replace, since I have a special license to prescribe the Suboxone that helps them stay sober. I actually enjoy it. They're a pretty nice group. One of them asked what surgery I am having tomorrow. I told them I was going for an emergency boob job. (This group is fine with that sort of thing. They know me well by now.)
OK. The boy is right. Time to pack for the hospital. (I'll tell you how that's done some other time. It's an art.)
As some of you may know, my surgery date has been switched to August 18th. I don't know whether it was because the Clivus Dudes couldn't wait to see me in that provocative hospital gown or because they couldn't find an anesthesiologist, but there it is.
I really appreciate all of the good wishes and offers to help that everyone has sent. I am actually not so scared about this surgery. Unlike the last one, in 2012, I feel pretty certain this isn't cancer (Knock on wood!*); the surgery itself is noninvasive; no one is opening my face like in 2005 and 2007; and if this is anything like 2012, the recovery should be quick. It kind of feels like getting a colonoscopy plus a night or two in the hospital and minus the day of watery diarrhea and creepy photos.
Of course, I could be wrong. This could be the beginning of something horrendous. In that case, you may expect months of entertaining updates.
*Interesting origin of this expression (or so I remember). In pagan northern Europe, if you wanted something, you could go to a tree and ask the spirit inside to help you get it. When you got what you wanted, you would go back and stroke the tree, or, as the English still say, "rub wood." (I cannot be held accountable for the way in which those last two phrases might be interpreted by the more imaginative among you.)
At about 8 o'clock tonight, I got a call from the nurse. (Does she live at the hospital???) I got a date for surgery! August 19, baby! I'll get all dressed up in one of those hot johnnies with the open back, and it's gonna get real!
Just a pause from the wisecracking for a shout-out and some advice. Don't face your illness alone if you can help it. I don't.
My stalwart ally and zealous advocate through all of my adventures has been my wife, Kathleen. Starting with the tumor at the roof of my mouth in 2004, just two years after we were married, Kathleen has kept track of logistics, battled bureaucrats, and pushed me to seek care when I would rather stay home. She has come to every key doctor visit and taken notes, asked questions, and pointed out discrepancies. She has been there every time I have awakened from general anesthesia, and she has sat by my bedside, catching medical errors before they could cause me harm. While not a doctor, she is an expert on my health.
As a patient, I don't think like a doctor. I forget to ask questions, and I miss details. I often defer. Even though my doctors have all been very smart and dedicated, they cannot watch my health as closely as Kathleen does.
When you are a sick patient, you cannot depend on yourself to be at your best. Your judgement will be clouded by anxiety, denial and whatever mental effects your illness may have. You need an ally. As a doctor, I have seen this role played, not only by spouses, but by parents, siblings, children, nieces, nephews, friends, and neighbors. Look for help, and you will probably find it.
Thank you Kathleen. I love you, and I wonder if I would even be alive without you.
It's actually a bit premature to call it a zit. It could be a malignant zitoma,* but let me be an optimist for once.
[Warning: This gets really gross, but it's what's going on inside my head. Literally.]
As some of you know, I went to meet some surgeons yesterday. Since then, I've gotten a lot of questions such as,"do you have a date for the surgery." (What a silly question! K is always my date!) Anyway, I've tried not to give out too many spoilers. Here's what happened:
K and I drove back in from our Cape Cod vacation to Ben and Jerry's Hospital** (BJH) to meet with a couple of surgeons, the Clivus Dudes. These guys are two outstanding docs who specialize in endoscopic surgery*** of the skull base. I'm so special, I get to have both of them operate on me at the same time.
They showed me my MRI. It's really unflattering. Radiologically sliced into hundreds of cross sections, I am one ugly guy. To make matters worse, my clivus is a goopy mess. The front and center of the bone have dissolved, and there is a grape-sized blister of fluid on it. This looks to me like a giant zit.
Theoretically, I could take a knitting needle, stick it up my nose, and pop the thing, but the Clivus Dudes want to clean out as much of the diseased tissue as possible, not to mention that they really need to be careful of my right carotid artery, which is right behind it. Then they'll send it all to pathology.
This should actually be a pretty easy procedure from a patient standpoint. Not much harder than a knitting needle. They will have to put me out, and I will be in the hospital for a night or two, but that's kid stuff.
However, in addition, there is a pea-sized collection of fluid (also probably pus) in the area behind my right eye. That's inside the braincase, so it's very creepy. It would be very hard to get with a knitting needle or with anything else for that matter. The Clivus Dudes will leave it alone for now. If the thing on the clivus turns out to be infection, antibiotics might mop it up. Otherwise, someone has to go in there and take it out, and that's a huge surgery. I'm not ready for that kind of fun.
After surgery, assuming this is a zit, I will need to apply my son's zit cream to the area from now on. Not really. I will need lot of antibiotics.
But, after all of that is over, I'll have to think about preventing it from happening again. Someone may have to reconstruct part of the inside of my face. That could keep this blog going for months.
The (first?) surgery will probably take place some time during the week of August 15th. Stay tuned.
*Zitoma is Doctor-Speak for a cancer that looks like a zit.
**This is my nickname for Brigham and Womens Hospital since Brigham's is famous local ice cream brand.
***By endoscopic, I mean that they use tiny instruments and a tiny fiberoptic tube--kind of a My First Colonoscope by Kenner)
By the way, here are some pictures to show what I'm talking about. I have this cheap plastic skull my parents got me for Halloween in 1982. It's not perfect, but it's pretty good for a prop:
This shot is looking into the top of the skull. The skull is facing up and to the left, and the two holes in that direction are the entry points for the optic nerves that come from the eyes. I am pointing to the clivus, which is where most of this is going on (luckily on the nasal side, not the brain side).
The clivus is the part of the skull that starts from about where my finger is down to the opening at the bottom of the skull where the spinal cord exits.
My finger is covering the entry point of the right carotid artery. The entry point of the left carotid artery is visible to the left of my finger. These are big, important blood vessels that supply much of the brain, so nothing you want to poke with a knitting needle.
The pea-sized fluid collection inside the braincase is directly above my finger (from the standpoint of the picture).
Below, the camera is looking up from underneath the skull at the roof of the mouth and behind it. I am pointing to the nasal side of the clivus. The hole to the left of my finger is the for a post on which to display the skull. Most people don't have one of those.