Wait! One More Bit of Bad News!

OMG! I'm late on my next screening colonoscopy!

Sorry. Not actually a big deal. Occasionally, I like to do that sort of thing to people.

Be well,

--T

Our time was short, but it was so rich, and so, so joyful.

I am lucky.

Unlike Humpty Dumpty, We Are Not Having a "Great Fall."

First of all, the good news: no members of the household have died since November 21st.

*                    *                    *

K had another lumpectomy 9 days ago because her first lumpectomy missed a little bit of tumor. Today, we saw her surgeon back at the F'in' Famous Cancer Hospital downtown, and she told us that there was a little, itty-bitty, tiny, wee bit of tumor that was poking out beyond the margins of the second lumpectomy. This is known in the business by the combination of Latin duo- with -ectomy to make a dumpectomy.  So, it's on to a third lumpectomy. As you might guess, the combo of the Latin tres- with -ectomy to makes a trumpectomy.*  (Thanks, I'll be here all week.)

The surgery is tentatively scheduled for January 4. Maybe the new year will be luckier. Interestingly there is a new kind of test that will, be done on the tumor. It should give a pretty good estimate of whether it would be a good idea for K to get radiation. We hope it will be unnecessary, because we have reason to dislike radiation in this household.

K is, as usual, calmly going through scientific papers and putting her doctors through their paces, making sure she will make the right decisions. She has done this for me too. It's quite impressive.

*                    *                    *

Always competitive, Katie the Cat has joined the fray, but it's a weak offering. K dragged her to her senior cat appointment at the vet's, and they concluded that she has some kidney damage. However, this is common in older cats, and she may yet have a few more years in her. (She's 14.) I picked up her prescription kidney-friendly cat food today, and I am sure she will hate it.

*                    *                    *

So, that leaves little old me. First of all, I am in the last of my six weeks of 24-hour IV penicillin. I have just come up with some true comedy gold about this even as the window closes.

Here is my faithful IV pump, Alvin. He is attached to me all the time:

Now, whenever someone asks me what Alvin is, I will say, "do you remember that thing on Darth Vader's chest?" I hope I'll get an opportunity to do that. Nevertheless, I will not miss Alvin and his frequent muttering, and I will be able to do parkour again.

Meanwhile, though, there is other stuff going on. There is the matter of at least four months of oral amoxicillin. JD recently pointed out that only way to know for sure that the antibiotic worked is for me not to spit out another piece of skull. That's not very useful, so I may be on it forever. This may contribute to my lifelong dream of having a whole new resistant bacterium named after me!

Also, I am producing an enormous amount of gunk from my facehole.** That means infection. It may or may not be the same one that has been tearing up my skull.*** In any case, neither of two additional antibiotics have touched it. How, and even whether this can be cured is the next question, but I have an all-star team working on it. More adventure!

Meanwhile, B, hardened veteran of his father's health antics, remains unfazed.




* Sorry, Ed. I just had to say it.

** The area which used to be my sinuses and a nice thick bone at the back of my throat before surgery and radiation made a mess of it.

*** As old Walt would say, "I contain multitudes."

Katie the Cat insists on nighttime walks (without a leash) just like the ones we took with her younger, smellier sister. This brings me comfort.

Ginny's Sunset

Ginny the Wonderful is gone.

As I wrote in the last update, on Nov. 19th, the veterinary oncologist stopped her chemotherapy and doubled her steroids, teaching me to inject those and all of her meds so that she would not vomit them. She was much better by evening. On Nov. 20, unfortunately, I went to work. Kathleen gave her several walks around the neighborhood, and she enjoyed herself greatly.

When I came home from work, she was so revived by the steroids, that, instead of waiting at her station at the top of the stairs, Ginny came down to me with her tail wagging. We rubbed the tops of our heads together near the floor in our old ritual greeting as I scratched behind her ears. Then as in old times, she dropped her butt to the floor in a loud 'thump' and rolled over for a tummy rub. Then I took her for a good walk in the dark, with me in my crazy neon jacket and her in her harness of flashing lights, and she ran free and joyfully around the neighborhood. We had our Ginny back.

But, like the green flash of the top of the setting sun as it just dips below clear tropical oceans, her recovery was beautiful, but vanishingly brief. At a little after 6 yesterday morning, she came, tail wagging, to K's side of the bed to see if she was interested in getting up that early. Since K was not, Ginny went back to her bed. Then, as B was getting ready to walk to the schoolbus stop, she came downstairs for a scratch on the head from him.




A little before 8, I was awakened suddenly by K's distraught cries: "She can't stand up! She can't stand up."

On the wooden floor of our bedroom, Ginny tried to get her legs under herself but could not. We tried to lift her onto her bed, but she struggled, clearly uncomfortable. "She's rolling her eyes," K cried. I looked, and Ginny's eyes were rolling back in her head then shooting back down, over and over. The medical term for this is vertical nystagmus. It must have been miserably uncomfortable and frightening, and it meant that a tumor near her ear had invaded her vestibular (balance) system. I quickly injected her with her steroids, and it helped, but she still could not stand. Meanwhile, K called a vet who makes housecalls to put pets to sleep in their own homes. She also called the veterinary oncologist who confirmed what we already knew: that this was the end. Then K went and got the B from school early while I cried on the floor with Ginny.

Two of Ginny's favorite humans, D, and H, briefly came by to bid farewell to the stricken girl. They had been walking companions for the two of us on many a weekend day, and Ginny wagged her tail as she always had when they appeared. They stroked her head as she lay on the floor looking back up at them. 

The vet who came to the house was wonderful. For the last time, Ginny attempted to stand, almost succeeding as she wagged her tail to greet the visitor. Then, as we all sat on the floor around Ginny, singing to her, petting her, and telling her we loved her, the vet first gave her a narcotic to calm her. Then, she gave her ketamine so she would feel joy in her last moments. Finally, she gave her the phenobarbital, and Ginny left us.

B and the vet carried Ginny to the car in her blanket. K and I drove her to the crematorium. We could not stand the thought of some stranger taking her from us.When summer comes, we will bury her ashes under the rhododendron bush by the back door of the family house on Cape Cod where she used to dig herself a bed to stay cool on hot days.




She only lived to be 7 years old, and she had us for only 5. But, for as long as any member of our family lives, She will zoom with joy, all four feet in the air; she will lie contented on sunny grass or dig holes in the cool shade; she will walk with me through woods and fields, exploring mysterious vistas or playing with friends; she will greet our neighbors as they get out of their cars; she will wag at all humans and love all children; she will be on our couch next to us, lying on her back in bliss as we rub her belly.

Ginny Forever

The Clouds Gather Over Ginny the Wonderful

Here is the update of the triple threat. Not much humor.


1. Me and Alvin.

As for me, I'm OK. All day and night, Alvin continues to chirp as he sends penicillin through a long tube in my right basilic vein in the upper arm. It's just an annoyance. Another 4 weeks to go with that.


2. K and Margins

As I said last time, K's surgeon excised her tumor on Halloween. The final pathology took a long time to come back. All of the tumor was DCIS (nonaggressive breast cancer). However, as we suspected the margins were not clear. The surgeon will have to go back in and get out the remaining tumor on December 3.  It is highly unlikely that they will find any aggressive cancer in those small bits of tumor. It's upsetting, but prognosis is good.


3. The Clouds Gather Over Ginny the Wonderful

As I said last time, on October 23, Ginny's prednisone dose was halved, and she started an oral chemotherapy drug called Palladia. The chances that Palladia would work were 40% or so. She is not in the 40%.

The tumors in her lymph nodes stopped shrinking. The Palladia made her nauseated, and she tried harder and harder to resist her medicines, holding her mouth shut ever more tightly, and cleverly cheeking the pills. Then, she started vomiting up everything, including food and water. Her eyes grew red and bleary, and she became weak and lethargic. She looked like she was dying.

Today, we took her to the oncologist, Dr. Cronin. Clearly, the Palladia did not work. Any other chemotherapy drug would cause a lot of side effects with little chance of success. All we can do now is maybe buy her a little time. Dr. Cronin gave us injectable drugs, including an antinausea drug, a steroid, and two other drugs to control the effects of the histamines that the tumors release. Dr. Cronin's nurse gave her the first doses along with a big bag of fluids to make up for the fact that she had not had any water for a day or two. It all went into the great pile of loose skin all dogs have over their shoulders. She hardly noticed. Then, leaving the clinic, I had to lift Ginny into the car.

We went home, and I sobbed for a few hours. I tried to nap, but I couldn't. I came downstairs and sat on the sofa, thinking I might do some work. But, suddenly, there was Ginny, standing up, looking right into my eyes, wagging her tail, and hyperventilating, which is how she asks for a walk. So K and I took her for a long walk through the neighborhood, and she ate her treats, ran around, and sniffed everything like she always has. Then, she had a fine hamburger for dinner.

We have our Ginny back. It's only for a short while. The steroid will freeze and maybe shrink the tumors, but the effect will wear off. It may get her another week or two. We will enjoy every moment she is still here.

We have decided that Ginny may eat all the cat poop she wants. 

After all, what's the harm?

Trouble Comes in Threes. Incidentally, So Do Stooges.

Hello, all. You would think by my silence lately that I haven't had much to talk about. Sadly (or happily, for my creative side), things have been far too exciting, and my family is under a triple threat. Two other members are horning in on my tumoriffic territory, and I have my own stuff.

1. A Tumoriffic Dog is NOT Funny.

There is no way to laugh at a dog with cancer. Ginny the Wonder Dog is in trouble. This summer, little, flesh-colored tumors started popping up on her lower lip, and one on her cheek. They were about the size of seed pearls. Another turned up on her left haunch, and one on one of her legs. These turned out to be mast cell tumors. They are very common in golden retrievers. They are usually slow-growing and rarely spread beyond their original site. Once they do, however, they can be quite dangerous.

So, our vet removed them, and, in doing so, found a tiny melanoma inside (!!!) her left cheek. That was taken off as well.

Then, in August, suddenly, a mast cell tumor about the size of a penny showed up again on her lower lip. That too, was removed, but a few weeks later, at the end of September, K found an egg-sized lymph node of the left side of Ginny's neck that was clearly from that tumor.

K got her an appointment with oncology, but it was towards the end of October. The node grew noticeably by the day, and Ginny started to have trouble swallowing. Our heroic vet coordinated with the oncologist and did the necessary biopsy and started Ginny on steroids right away. The tumor began to shrink, and Ginny improved, but this was only a temporary measure.

Finally, on October 23, we saw the oncologist, and Ginny started oral chemotherapy alternating with steroids. At the start of therapy the average dog with this tumor at this stage has a 60% likelihood of dying within 2 months, a 30% chance of living to 6 months, and an 8% chance of getting years. This is her only chance. The other regimens all involve IV chemo, have much worse side effects, and would not be any more likely to cure her. It would be cruel to inflict that on her.

However, aside from the yucky pills we make her swallow, Ginny has been taking it all in stride. She is her soft-spoken, laid back, loving self. She is still excited for her walks, long and short.* She still poses obligingly for pictures, and she still goes off into the woods seeking disgusting things to eat. Her life is good except that her stomach is a little upset.


* Just tonight, she saved us from getting lost in the woods. We had gone to a nearby park. I thought I knew it pretty well. I decided to take a side path after we reached our turn-around point, but it somehow took us to a whole new part of the place, and I didn't know the way back. I just put Ginny on autopilot, and she took us back in and all the way to the car.



2. A Tumoriffic Wife is NOT Funny, but I do get some wisecracks in.

Meanwhile, in early July, K had a mammogram and, in late July, a follow-up mammogram. These were not nice, so, on August, 10, she had a biopsy. This showed ductal carcinoma in situ (DCIS) in her left breast. This is an unpleasant diagnosis. It's cancer. However, it's very localized cancer that may or may not cause trouble in the future. With treatment, K's lifespan is unlikely to be shortened.

She had her lumpectomy on Halloween. However, we did have some fun that day. We bantered back and forth in preop, which charmed the staff, and, afterwards, I asked them if K could still play volleyball that week. On the way home, I asked if she wanted me to cancel our date at the trampoline park that evening. She did.

We're still waiting on the final pathology report. The margins on what they removed may not have been completely clear, which would mean another surgery. Also, there is always a chance that some part of the tumor will be invasive breast carcinoma, which might involve unpleasant treatment.

So, K is not out of the woods. On the other hand, she is handling this with her usual poise, and her long term prospects seem very good.



3. And, for Me, Another Fine Mess, but that's funny!

According to Mel Brooks, "Tragedy is when I cut my finger. Comedy is when you fall into an open sewer and die." However, my brand of humor is more medical slapstick, and I hope that when I fall into an open sewer and contract a fatal collection of bacteria and parasites, I'll have something wittier to say than, "oh, s**t."

Anyway, you may remember from last episode that I had spat out a piece of skull (my own). I've done this a few times, and it doesn't freak me out anymore. I have always figured it's what happens when you have had an absurd amount of anti-cancer radiation to your throat, and the bone is exposed with the tissue unable to grow back over it. I would just have to live with it until all the bone between my throat and brain was gone. It would get down to the leathery outer lining of my brain case called the dura mater. Perhaps, that drum-like material would give my voice an interesting resonance, but my new singing career would end when the dura mater dried up and cracked in a few days. Then, game over.

But it bothers K and Hygeia* (goddess of otolaryngology), so, as I said in the last episode, Hygeia insisted I take my Chunk O' Skull** to the Pathology Department. They found a rather obnoxious bacteria called, Actinomycetes.*** "Whatever," thought I. I have all sorts of nasties creeping around in the space between the back of my throat and my brain case. It's dead bone, so, even if you somehow clean it out, it's all going to come back. There's no way to cover that bone surgically, because it's in the busiest intersection in the whole body. It would be like repaving the LA freeway system at rush hour.

Once again, neither K, nor Hygeia were having any of that nonsense. Go see John, my infectious diseases upstairs from my office, they said. So, soon after, I asked John, "John, is this really such a big deal." "Yes, it is, you moron," he said politely, and promptly kicked me out of his office to go find an infectious diseases doc with more experience in this area. At that point, I realized I was in for another adventure.

As always happens seems to happen eventually with all these dramas,  it was time to  F'in' Famous Cancer Hospital. Down there, they've seen lots of Kentucky Fried Skull**, so, if anyone did know what to do, they would. So, I called my old friend and reconstructive surgeon, The Fixer*. He graciously set me up with an infectious disease specialist to be known henceforth as Ski Buddy. (That's Doctor Ski Buddy to you!)

Ski Buddy is about 2 years older than I am. It turns out that we had hung out a little bit as kids. Neither of us remembers it, but our dads (who happened to have done their gastroenterology fellowship together) were working on a pharmaceutical and went to a meeting about it at a ski resort in Cortina, Italy. His dad was also my med school dean. (It's all the Medical Mafia.*)

Anyway, Ski Buddy is a wicked bright guy, and he says that my skull has been falling apart, probably not just because it has been drying out, but because this devious little bacterium, Actinomyces, has been gradually undermining my tissues over years. Every once in a while it flares up, and I get symptoms which I treat with a course of antibiotics that is enough to tamp it down but not cure it. However, most of the time, it just quietly picks away, causing nothing that anyone would notice except chronic halitosis.

Long story short, I need 6 weeks of intravenous penicillin followed by another 4 months of oral amoxicillin. You may ask, does that mean that you will have to spend the next 6 weeks in the hospital? Thank goodness, no. I've seen more hospital time than I ever cared to.

John, who has more important things to do with his time and is a complete and utter mensch, spoke to Ski Buddy and got the plan. Then, he arranged for me to get a Peripherally Inserted Central Catheter (PICC line), which, thank goodness, goes in a vein, and not where you might think. I went to Home Base Hospital, the charming and excellent community hospital with which I am affiliated. After I hung out and gossiped with the nurses, extremely skilled interventional radiologist Richard inserted the line in a big vein in my inner upper arm. I didn't feel anything except the Novocaine.

There was one minor setback. The line got twisted (or, as we in the field say, 'kinky'). However, it was easy to replace. Then, after my first dose of penicillin and a lesson for Kathleen and me in how to change out the penicillin bag in my portable IV pump whom I have named Alvin. Then, with my new swag (a man purse for carrying the pump) attached by IV tube to my PICC line, we went home, and I walked the dog.

The arrangement is kind of annoying. I have to wear Alvin 24/7 (except for showers), and Alvin is a bit chatty. All he can say is BZRP, though. I have gone back to work, and it's a little awkward to explain to patients. And Alvin never shuts up. Even at night.

And then, there is the shower issue. You can't just walk into a shower with a PICC line. It's not a good idea to get it wet. You have to wear a plastic bag over it. I used to have one left over from my last PICC line. It was a repurposed elephant condom. However, it disappeared a while ago. I suspect it was stolen as part of that peanut burglary crime wave a couple of years ago. Maybe someone wanted it back.

Anyway, we got a new, unused elephant condom. (You can buy anything on Amazon: https://www.amazon.com/Elephant-Condom-Speaks-Shanahan-November/dp/B07DTZZ8GF/ref=sr_1_1?ie=UTF8&qid=1541993871&sr=8-1&keywords=elephant+condom)

And life is back to sort-of-normal for me. Stay tuned for the other two.




* See http://www.tumoriffic.org/LLC.htm

** TM 2018, Tumoriffic Industries

*** Little known fact: Actinomycetes was the Greek hero who proposed undermining the walls of Troy. No one remembers him, because everyone liked Odysseus' horse idea better. It's sad, because that Trojan Horse thing was a neat trick, but it's never worked again, and people have been undermining walls ever since. For instance, there's that wall along the border with Mexico.

Ginny, the Wonder Dog and forest pathfinder. Long may she reign.

Surprising the Folks in the Lab and Other Minor Updates

OK, so nothing skull-shattering today. Just a few more tidbits.

First of all, in nonhuman news, Ginny, my sweet, tumoriffic dog, is recovering quickly from the third surgery to remove a tumor on her face this year. (We hope this is the last one.)

After just a couple of days, she is asking for long walks, cheerfully licking clean the broiling pan, and happily lying next to me on the couch as I write this. I love dog attitude.

And, back to me.

When I spat out that piece of skull the other morning, I saved it in a little sterile cup that I keep next to the sink for just that purpose. (Who does that?!?!?) I called my ear, nose, and throat doctor, Hygeia, and told her about the surprise. She put an order in the computer, and I took my special treasure to the pathology lab at the hospital.

I came to a desk where people usually drop off pee or stuff like that, and they looked at me and said, "wait, wait, WHAT is that, again? WHERE did you say you got that?" (I get this sort of thing all the time.) After much jaw dropping and buggy eyes, they took it off to the path lab to brew in their special blend of herbs and spices.

Hygeia decided to get a CT scan of my skull to see what piece was newly missing. The question is whether some essential structure has just been exposed to the air and whether something else is about to fall off. I hope not. The CT will probably be next week. I'll tell you about it then.

Then, 2 days ago, I went to a previously scheduled appointment with my primary care doc. She happens to be one of the leading experts in care for cancer survivors, yet, even she was pretty stunned. (This is better than a lot of docs. They just think I'm making this stuff up.) We decided that, if there is actually some essential structure just about to be pulled apart, I might have to look for some surgeon crazy enough to do the equivalent of repaving the entire LA freeway system without disrupting rush hour traffic. Who knows, this could turn into a first class, edge of your seat, Tumoriffic adventure instead of the little joyride it is now.

Then, today, I got a message from Hygeia's office that my skull bit is growing all sorts of fancy bacteria with names like Nocardia, and Actinomyces, which sound like mythical ancient Greek beings. So, I have to talk to my ID buddy upstairs, JD. Frankly, I don't think there is much to do about it. It's not like you can antibiotics into dead bone. Besides, the bugs aren't really bothering me right now, so why bother them? But I'll do whatever JD says.

So, updates in a week or so. I hope all will be boring.

WHAT did you spit out again?!?

You Want a Piece of Me??? (NSFD--Not Safe for Dinner--really gross)

OK, I have to go to bed early tonight, but I had to update you all, because something very creepy happened to me this morning, and it's too fun not to share right away.

Now, this has happened twice before, but it never gets old. This morning, I was doing my usual nouching routine.* Usually, I spit out a bunch of schumtz and start my day. However, this morning, like a fragment of pottery, a little piece of bone showed up in my mouth and clattered on my teeth. It was dead--like a black and brown, crispy bit of sponge.

As I have said, this has happened twice before. I have had an absurd amount of radiation to the skull just behind my nose over my life, and, at some point, a chunk of skull just called it quits. Now, pieces of dead skull occasionally drop off, and I spit them out. It's almost as disgusting as chewing tobacco.

But, this is never routine. The part of my skull that got so fried is a superhighway of important nerves and arteries. I worry that someday, some chunk will come off and take something important with it. Maybe it would be an artery, which would be a dramatic way to go. (If that has to happen, I hope it happens at a party just after I said something really funny. What a performance!) The other possibility is that it would take out a bunch of nerves. That would make my uniquely sexy face even more suave than before, all saggy and 'thpeaking lige thith.'

Now, there are actually much more immediately important things going on in the family right now, but a little bit of skull for breakfast does make one a bit self-centered for a while.

This dog wishes you a happy dog day!

Ooey, Gooey: the Revenge of the Nosebleeds

Today, the cliff shall be unhanged! It's a little anticlimactic, since we're not talking about horrible tumors or immanent death, but it's kind of gross.

As I wrote on the night of the 12th, I was to see the amazing neurosurgeon who had tried to plug my nosebleeds and then see a very well-respected neurologist and stroke expert whom I will call Lord Strokes (This is not at all fair. He's a very nice guy who, in no way resembles the evil overlord of the First Order.)

So, on Friday, the 13th*, Kathleen and I drove downtown to the O'Hair Medical Center for the appointments. First, we saw Lord Strokes.


Meeting with Lord Stokes

I hadn't seen Lord Strokes since 2006 when I had my first stroke, so we had a lot of catching up. I had sent him one of my own patients recently, and we discussed that too. The good news is that there has been a big study comparing doses of aspirin from 50 mg to 1300 mg per day for the prevention of stroke. There was NO difference except that the incidence of stomach ulcers and kidney damage increased with dose. So I can get by on a low dose which will cause less of a risk of nosebleeds.

Then, it gets complicated. There are two likely causes of my strokes.

One of them is absurd amount of radiation to my head I got for my cancers. Sadly, this was not ruled out when the neurosurgeon found no narrowing of the arteries of my head. The effect of the radiation is on microscopic vessels called arterioles. This is not visible until you cut the patient's head open and collect some tissue. I'm not really up for that. But I think this is the most likely cause. I received so much radiation that radiation oncologists practically faint when they hear about it. Also, the two strokes were located close together within the radiation field.

However, that still leaves the issue of the little hole between the top two chambers of my heart (patent foramen ovale, or PFO).** It is possible that a small blood clot found its way from the right side of my circulation, through the PFO, into the left side of my circulation, and to my brain. Even if it's not the case, with a PFO, my risk of stroke is 1.5 % a year. If I get the PFO closed, that risk drops to half a percent per year.

Closing the PFO is relatively easy. They spike my crotch again (which is getting to be routine), and another catheter is threaded up, this time through the veins, and into the the right side of my heart. There, they would open a little umbrella-like device which would block the hole. I am in no hurry to get this done, but I expect I will get it some day.


Meeting with the Neurosurgeon

So, finally, the time came for the follow-up with Dr. Crotch-Spiker (provisional, inappropriately disrespectful nickname for a doctor who is at the very top of his sub-sub-subspecialty and is a good man). We told Dr. Crotch-Spiker (whose parents' last names were Crotch and Spiker) that I was still having nosebleeds. He shook his head sadly. The intense headaches and fevers I had after the procedure meant that he could not repeat it without risking permanent damage to the tissues. I am going to have to live with the nosebleeds.

That said, it's not so terrible--a lot better than it was before the procedure. Instead of erupting with gushing bleeds in the middle of patient appointments and having to rush to ENT for cauterization, I have a slow trickle that does not even come out until I have gone a few hours without rinsing my nose.*** I just have to remember to rinse in the middle of the day to avoid sneezing bloody goo in the afternoon.

And that's the end of this particular adventure. Another annoyance, but not the end of the world.


Be well,

Tom


* No, I don't believe that means bad luck. If there were truly an unlucky date/day-of-the-week combo, it would be Monday, the 13th, wouldn't it?

** See Tumoriffic, original blog, August 7, 2007 for more on that: http://www.tumoriffic.org/Part%20III.htm

*** Technically, this procedure is known as a 'nouche,' for nasal douche. It is done with a squeezable 8 or 16 oz bottle filled with salt solution. I do it at least 4 bottles at least twice a day and a lot more when I have an infection.

You too can nouche. I strongly recommend it for anyone with sinusitis or cold. The bottles, made by Neilmed, are available at most drugstores. You should use distilled or boiled water and mix it with a little bag of salt and sodium bicarbonate formulated to match the salt in your own blood and snot. (That way, it doesn't sting when it goes in. Pure water really hurts.) Neilmed makes these bags, but CVS, at least, now sells their own bags, which are much cheaper. You don't have to do it as much as I do, but it should help with cold symptoms, help prevent colds from becoming bacterial sinusitis, and make your bacterial sinusitis go away faster. Happy nouching!

This bird never gets bloody noses.

Flashback: When to Ignore Meningitis Symptoms

This is going to be a confusing post. My last post was on the evening of July 12, just before the follow-up appointment to my June 6 procedure. But I still haven't told you about the procedure itself and what happened over the following days.

Rewind to Tuesday, July 6. (For context, look at my post of June 5.)

That morning, it was time to get my second spike in the crotch. Kathleen drove me downtown to O'Hair Medical Center, and we wended our way through a maze of corridors until we reached the Spike-in-the-Crotch Department. Contrary to my childhood memories, the procedure was not as bad as it sounds. I would not want to do it for fun (not that there's anything wrong with that), but, with the right sedatives and pain killers, it's tolerable, and, unlike the week before, I don't remember it at all.

Once again, the neurosurgeon (whom I have yet to give a silly nickname) threaded a catheter up through my femoral artery, past my heart, and into the arteries in my nose. This time, it wasn't just to look around, but to take care of business. Zillions of tiny arteries had blossomed in my nose--far more than I needed for normal nosing. The neurosurgeon released tiny beads that blocked off the extra arteries. I don't remember any of it, but the neurosurgeon told me he had a lovely time.

Once I left the recovery room, I was rolled up in a wheelchair to the neurological intensive care unit. There is a small potential for a stroke after such a procedure, and they thought it would be fun to watch.

If you ever have reason to go there, I highly recommend the O'Hair Medical Center Neurological Intensive Care Unit. Four stars--the fanciest I have ever worked in or stayed as a patient. Unlike the last one I where I was a patient, I wasn't miserable and hallucinating, but there is a lot more to recommend it. It is clean and modern-looking. The rooms are singles, and pretty big. They are closed off completely. (The staff could look in through the window that covered one wall, so it did lack a certain privacy.)

It just to happened that my nurse and student nurse had no other patients that night, so they fussed over me even though I felt perfectly fine. They wheeled me down for an MRI--a fun trip, and we laughed and traded medical war stories. They even went downstairs to the lobby to get me something from the Au Bon Pain (which translates to Oh Bone Pain) because the kitchen was closed. Then, I went home in the morning and slept much of Wednesday.

On Thursday, June 8, I went back to work at the office. I began to get a little ache in my face and a little bit of a bloody nose (which defeats the point of the whole procedure). It wasn't terrible, but it wasn't what I expected. So, near the end of the day, I called the surgeon's office and asked his nurse whether this was normal after the procedure or whether I should go to the Emergency Department. She said I should. I was skeptical, but, after work, Kathleen and I went all the way back to O'Hair.

That visit to the ED was kind of fun, if inconvenient. One of the docs there liked to tell doctor-lightbulb jokes like, "how many psychiatrists does it take to change a lightbulb? One, but the lightbulb has to want to change." The neurosurgery, and ear, nose, and throat staff were unimpressed. Apparently, this was not so unusual after the procedure I had had. They sent me right back home, and, the next day, I went back to work with a little ache in my face. I still don't know why I was supposed to go to the ED in the first place that night.

Then, Friday night, I started to get a really bad headache--the worst I had ever had, and I had a temperature of 103. (Friends not from the US, don't worry. I wasn't boiling alive. In Celsius, my temperature was about 39.) We got a little freaked out and called the O'Hair neurosurgery coverage. They kind if yawned but said I should go to the Emergency Department. They said I didn't have to go all the way downtown this time, so I went to a nearby hospital where I had worked but never been a patient. That's always nice.

They seemed slightly more excited, but once they talked to the neurosurgery coverage at O'Hair, they yawned too. They sent me home, and I tanked up on full dose acetaminophen and ibuprofen (known more commonly by their brand names, Tylenol and Motrin).*

I slept all day the next day and had an even worse headache and a fever. This time, I had neck stiffness, and it was painful to touch my chin to my chest. This was kind of scary, since, when a patient comes to me with these symptoms, I send them to the emergency room, and they get admitted to the ICU.  These are the symptoms of meningitis. So, Kathleen called the covering neurosurgeon. He yawned, but he actually explained things better this time.

Some of the blocked arteries had been doing more than just causing bleeds. They had been feeding tissue that was getting inflamed after losing some of its blood supply. That's apparently something that can happen after the procedure I had, and it can feel like meningitis.  So, I just took the big painkiller combo (with an acid-suppressor--omeprazole--to protect my stomach) for a few more days until everything stopped hurting. It seemed to be a happy ending. But the story was to continue.

Next: Ooey, Ooey, Gooey--the Revenge of the Nosebleeds.





* This is actually a very good combo for severe pain, and I recommend it too my patients. Acetaminophen is unrelated to all of the other over-the-counter pain medications, so it does not conflict with any of them. You can take it in combo with ibuprofen. Just remember that acetaminophen can be deadly for people who drink three or more servings of alcohol every night, and ibuprofen might burn a hole in your stomach or blow out your kidneys if you take it for more than a little while. In clinical trials, they do as well as narcotics.

I met this dog about a month later. He's not really relevant, but he's awfully cute.

Drip, Drip, Drip

OK, first of all, I have had writer's block. Somehow, a chronic nosebleed and the threat of stroke are as funny to me as impending doom from an exotic cancer that ends up being misdiagnosed. Why? I have no idea.

I have a long story to tell, but that will have to wait. I am already staying up too late, and I have to get up early tomorrow. On the other hand, there will be more news tomorrow, and I love a cliffhanger (although, it's really hard to beat 2005's "will he lose his right eye or not" moment)!

Briefly, the surgery did not entirely work. The story of what happened later is a laugh riot for another time, but I have been left with a slow ooze of blood in my nose that gradually builds up and then spills out after a few hours. This leads to such great moments as the other day, when I sneezed bloody snot on my shirt in front of a patient. (He had a story to tell when he got home.)

Meanwhile, I can only take half an aspirin a day if I don't want my nose to be a bloody spigot, and that leaves my vulnerable to another stroke. It might not be the fun kind like the first two. I could be driving or something.

So, tomorrow, for the first time since the surgery, I will see the surgeon again. Maybe he will have another suggestion as to what to do. He will probably want to repeat the procedure. That would mean another two stabs in the crotch followed by all the joys that followed them last time (to be described lovingly in another post). After that, I see the stroke guy and hear what he's got to say. That'll be a real hoot too.

Until later,

Tumoriffic Tom

My friend, Ollie the Gray Seal, says it's all going to be OK.

Best Angiogram Ever!

I have to admit, I was not looking forward to last week's angiogram. Some people are into that sort of thing, but not I. That said, last week's angiogram was the best I ever had. The first time was when I was 11 and getting worked up for the original tumor. I remember it as a distinctly unpleasant experience. This time was much better than I expected. The surgeon was really smooth with the arterial catheter. Other than the spike in an unpleasant place where they inserted the arterial catheter, it was kind of groovy. Or was it just the better drugs?

The results were interesting. First of all, there were the expected dense clumps of arterioles (tiny arteries) in each nostril. Those are why I have been getting nosebleeds since July, it means there is a solution to that. But, also, he did a general survey of arteries in the whole region.

Oddly, I have no atherosclerosis (harding/narrowing of the arteries). On the one hand, this is good news. Who, other than a pervert, would actually want to have atherosclerosis? On the other, it raises some annoying questions. I have always assumed that my two strokes were due to atherosclerosis of the arteries of my brain from my radiation therapy. That does not look to be the case.

The next most likely source of the strokes is the tiny hole between my atria (the top two chambers of my heart). This is a very common defect. 20% of everybody is born with it, and it is usually harmless. However, a large percentage of people who have unexplained strokes have this defect.* So then, we have to consider closing the defect, which can be done through yet another--wait for it--angiogram! I'm going to be a real pro at these things!

Anyway, last week's angiogram was just to get a map of my arteries--the appetizer, if you will. Tomorrow, I go for another angiogram, and this time, they mean business. They're going to release material (a combo of tiny beads or superglue) that will block off the extra arterioles that are the source of the nosebleeds. The downside is that there is a risk that too many arterioles will be blocked, and my nose will fall off. Well, actually, not fall off, but, still, badness. It's pretty unlikely, though. This interventional neuroradiologist / neurosurgeon does about 300 of these a year, and his record is excellent. But this is the sort of thing that keeps me up the night before a procedure.

On the bright side, if something bad happens, I'll be inspired to write more, and I like writing. On the brighter side, look at that adorable dog picture at the bottom of the post.





* It's called a patent foramen ovale (which sounds like the name of some sort of nobleman or other), aka PFO. The theory is that a tiny blood clot forms in venous (vein) system and makes its way to the heart. Then, somehow, it passes through the PFO into the arterial system and up into the brain, causing a stroke. This is weird, because the pressure is much greater on the arterial side, so you would expect stuff to go the other way, but there it is.

Artery Imitates Lifery

Get out the maracas, everybody! It's time for a nasal angiogram!

Why, you ask, would anyone want to a silly thing like that? What kind of nut would allow a doctor to stick a tiny tube into his femoral artery and thread it all the way through his major arteries and into his nose? This kind of nut, of course! Because I like it that way! Plus a real reason--bloody noses.

It all began last July, when I got an orbital cellulitis* under my right eye where I have no orbit. (See, Got the Stinkeye.) One of the major symptoms of that was nosebleeds.  While most of the infection went away, some remained in the back of my throat. From July until just a couple of months ago, I was on many different antibiotics, none of which worked for more than a week.** The infection finally cleared up a couple of months ago when I took my ENT consultant Hygeia's advice very literally and put gobs of antibiotic ointment up my nose every day. It was so much that it slipped down the back of my throat, directly attacking the site of the infection.

However, even after the infection got better, my nose kept on bleeding. And I'm not talking about a drop here and there. I'm talking about fairly exciting bleeds that sometimes might last for an hour until I had an emergency visit with a specialist to get it stopped. My nose would bleed at awkward times, like, for instance, when I was seeing a patient. I don't think I ever actually bled on a patient, but I was close a few times.***

This was made worse by the anti-platelet medication (kind of like a blood-thinner) that I take to prevent another stroke.**** This medication (Aggrenox) prevents strokes by making harder for blood to clot. Unfortunately, it also makes it easier to bleed. So, I have been going without Aggrenox for months. This is not a viable long term option. Strokes suck, even minor ones I like I have had, and the next one might not be so minor.

So, a few months ago, Hygeia suggested that I get this insane procedure to stop the bleeds. I procrastinated until I told Kathleen about it, which meant that it would actually get done.

The first part of this starts 6 hours from now. In the morning, this very specialized specialist will poke that a tube into my femoral artery, thread it through the major arteries all the way to the blood supply to my nose. He will then inject dye which will be visible by x-ray and allow him to make a map of the microscopic details of my blood vessels.

Some time in the next few weeks, after he has figured out the source of the bleeds, he'll do another angiogram (to me; unfortunately, I can't foist this on anyone else) and block the tiny blood vessels that are causing the nosebleeds with the equivalent of superglue. That has to be the hardest way anyone has every come up with just to sniff glue.












* which has nothing at all to do with planetary motion or unsightly lumps of fat around the thighs and buttocks. The orbit refers to the bone of the eye socket. Cellulitis is an infection just under the surface of the skin. An orbital cellulitis can be highly dangerous. The orbit is a relatively closed space, so drainage from the infection may get cut off, increasing pressure on the eye, potentially causing blindness, and so on. Lucky for me, my right orbit isn't a closed space anymore. They took the bottom of it out in 2005 when I had the osteosarcoma. See? Every cloud has a silver lining!

** Every time you use antibiotics, you are potentially breeding antibiotic resistant bacteria. Perhaps, if all of these antibiotics create an invincible superbug in my body, they can name it after me.

*** I'm fairly blase' about nosebleeds. I have had them fairly often since my childhood nasal cancer. I even carry a little clamp in my pocket that I can put on my nose to put pressure on it so I can still use my hands. I'm told it's very attractive.

****I've had two little strokes. For those stories, see Different Strokes for Different Folks in Tumoriffic, August 14, 2006, and I'll find the other link later.