First of all, let me clear things up. From the photo that accompanies this post, you might think I lost my right eye. Never fear. I know exactly where my eye is.
So anyway, times have been rather rough in Tumorland. As of my last post in mid-April, Bartleby appeared to be growing. Even so, there was a small chance that pembrolizumab might still kick in. Four weeks ago, I got one more cycle of it. We waited. And then lots of stuff happened.
Ear:
First, my hearing in my left ear has been much worse lately. I have been hard of hearing since chemo in 2005/2006. And then it got worse back in 2012, after Hygea, in an attempt to stop my chronic infections, sent me for hyperbaric oxygen treatments (link) and inserted ear tubes in my eardrums. Since I had to spend all day in a high-pressure clear plastic coffin, the pressure could have made my eardrums (tympanic membranes) burst if she had not first put in ear tubes into them to vent the pressure. Normally, after a few months, the tubes fall out, and the eardrum heals. So it did with the right ear, but my left eardrum never fully recovered, because I am just not normal. The left eardrum would heal and break, heal and break, over and over again. But despite the repeatedly breaking eardrum, the left ear was still my better ear. Without a hearing aid, I could still mostly understand someone speaking in a small, quiet room.
Then, just a few weeks ago, the left ear got much worse. I only had a little bit of hearing from it. Without hearing aids, I could no longer even hear K/BWE speaking to me from the other side of the bed.
Two weeks ago, I saw a superspecialist otolaryngologist, Dr Otto, who just takes care of ears.(1) He looked into my ear with an instrument that goes to video so I could see what was there. There was no tympanic membrane. Way back, right around where the bottom of my tympanic membrane should have been, I saw two itty-bitty bones (yes, bones) sticking up and leaning on each other. I know those bones personally. Those bones are the incus and malleus. They, along with stapes, normally connect the membrane to the. . . yaddah, yaddah, yaddah (too complicated to go into). . . which sends the sound to the brain.(2)
There is little to no chance that the eardrum will ever grow back on its own. But it might be possible to repair or rebuild it. Next week, I will see a surgeon who may be able to do just that.
Just what I always wanted--more surgery on my head.
Then, just a few weeks ago, the left ear got much worse. I only had a little bit of hearing from it. Without hearing aids, I could no longer even hear K/BWE speaking to me from the other side of the bed.
Two weeks ago, I saw a superspecialist otolaryngologist, Dr Otto, who just takes care of ears.(1) He looked into my ear with an instrument that goes to video so I could see what was there. There was no tympanic membrane. Way back, right around where the bottom of my tympanic membrane should have been, I saw two itty-bitty bones (yes, bones) sticking up and leaning on each other. I know those bones personally. Those bones are the incus and malleus. They, along with stapes, normally connect the membrane to the. . . yaddah, yaddah, yaddah (too complicated to go into). . . which sends the sound to the brain.(2)
There is little to no chance that the eardrum will ever grow back on its own. But it might be possible to repair or rebuild it. Next week, I will see a surgeon who may be able to do just that.
Just what I always wanted--more surgery on my head.
Hair:
And then there's the hair. A couple of days ago, BWE got sick of how bad my COVID-19 hair was getting, and she persuaded me to let her cut it using an electric razor. BWE is many great things, but she is not BBE.(3) She used a size one attachment on the hair clipper on the back of my head and did not think to layer as she went up from my neck. She stopped in horror about about three quarters of the way up. Now, I look like a monk with a very strange tonsure.(4) True, she could turn it into a crewcut, but I have some serious dents in my head from surgeries, and it would look really weird.
So, I'll be having a bad hair day for the next few weeks. Thank goodness that hair grows faster than my tumor does!
So, I'll be having a bad hair day for the next few weeks. Thank goodness that hair grows faster than my tumor does!
Eye:
But what about my right eye, you ask? It's actually still in the socket where it belongs, but events have given me a new view of life.
A little over a week ago, for the third time, I got double vision. I went totally cross-eyed. This had happened twice before in the last few weeks, but those times, it went away after a couple of hours. It was good for a laugh, but it passed. This time, the double vision isn't going away.
I can't move my right eye beyond midline because the muscle that is supposed to move it that way is paralyzed. The tumor is squishing the nerve that makes the muscle move. (Thanks for nothing, Bartleby!) I look even funnier than before, and I can't see straight if I try looking at something even a little bit to the right. I have to be careful not to bump into things or fall down the steps. I don't know when, if ever, I will get to drive again, and my career in pro baseball is ruined.(5), (6)
A little over a week ago, for the third time, I got double vision. I went totally cross-eyed. This had happened twice before in the last few weeks, but those times, it went away after a couple of hours. It was good for a laugh, but it passed. This time, the double vision isn't going away.
I can't move my right eye beyond midline because the muscle that is supposed to move it that way is paralyzed. The tumor is squishing the nerve that makes the muscle move. (Thanks for nothing, Bartleby!) I look even funnier than before, and I can't see straight if I try looking at something even a little bit to the right. I have to be careful not to bump into things or fall down the steps. I don't know when, if ever, I will get to drive again, and my career in pro baseball is ruined.(5), (6)
Also, I already expected that bad news was coming, and the cross-eyed stuff made it seem even more likely. Booooo!
The Trials of Bartelby:
I had a follow-up MRI on May 26.(7)
On May 27, I went to Man's Best Hospital for the results. K/BWE stayed in the garage, but I brought her in on speakerphone when the doctor came in. Unfortunately, Dr. Manhattan was away, so I saw one of her colleagues. I'll call him Dr. Bandit, because he was wearing a mask. He was perfectly nice, but it's easier to get this kind of news from someone you already know.
On May 27, I went to Man's Best Hospital for the results. K/BWE stayed in the garage, but I brought her in on speakerphone when the doctor came in. Unfortunately, Dr. Manhattan was away, so I saw one of her colleagues. I'll call him Dr. Bandit, because he was wearing a mask. He was perfectly nice, but it's easier to get this kind of news from someone you already know.
Dr. Bandit told us that the tumor is growing. It's growing slowly, but when someone tells you "the big tumor behind your face that's wrapped around some of your most important arteries and nerves and is cupping your brain is slowly growing," you don't dwell too much on the "slowly" part at least until you've had time to take a deep breath.(9)
Dr. Bandit then put us on the phone with Dr. Roland Dadice. He sounded smart and enthusiastic about his trial, but was also a little bit difficult to understand over the telephone, in part because of his strong Dothraki accent.(8)
Dr. Dadice is running a clinical trial of a new cancer drug. It's so new, it doesn't even have a name. (Drugs are just adorable when they are young!) They call it INBRX-105. INBRX-105 is only in phase I of clinical development. It looks good in the test-tube, but we don't really know how well it works in real life.
In a Phase I clinical trial, they test to see how high they can raise the dose before the patients start growing extra heads. That's a bit of an exaggeration. But they do try higher and higher doses of the drug in each round of patients until the patients start getting better, or they have severe side effects. So it's a bit of a roll of the dice.
Dr. Dadice is running a clinical trial of a new cancer drug. It's so new, it doesn't even have a name. (Drugs are just adorable when they are young!) They call it INBRX-105. INBRX-105 is only in phase I of clinical development. It looks good in the test-tube, but we don't really know how well it works in real life.
In a Phase I clinical trial, they test to see how high they can raise the dose before the patients start growing extra heads. That's a bit of an exaggeration. But they do try higher and higher doses of the drug in each round of patients until the patients start getting better, or they have severe side effects. So it's a bit of a roll of the dice.
Anyway, Dr. Dadice invited me to be part of his trial, and I really don't have anywhere else to go. And the eye-crossing thing is scary. So I said, "yes."
He told us that I could have an appointment at 1:30pm the next day. "You mean a televisit?" asked BWE.
He told us that I could have an appointment at 1:30pm the next day. "You mean a televisit?" asked BWE.
"Yes," said Dr. Dadice.
"A televisit?" she asked again.
"Yes," said Dr. Dadice.
"A televisit?" she asked one more time.
"Yes," said Dr. Dadice.
So it was settled.
I was working the next day, seeing my own patients through video or talking on the telephone. It was easy enough to switch things around so that I would have a big opening for my own televisit at 1:30pm. 1:30 came and went, but I got no call.
Finally, K/BWE called Man's Greatest Hospital to find out what was wrong. "A televisit, you say? Oh no. He's supposed to be here in person today."
That was when the whole day started to become truly tumoriffic.(10)
Finally, K/BWE called Man's Greatest Hospital to find out what was wrong. "A televisit, you say? Oh no. He's supposed to be here in person today."
That was when the whole day started to become truly tumoriffic.(10)
K/BWE rushed me downtown. I ran from the parking garage and rushed through Man's Best Hospital's COVID-19 security screen. They have standard questions.
"In the last few days, have you had a fever?"
"No."
"A headache?"
"No."
"A cough?"
"No."
"Muscle aches?"
"No."
"Have you travelled outside the country?"
"Well, I did just get back from a lovely trip to China." (They always laugh. If I said something like that in an airport, I'd get arrested.)
I got on the elevator and pressed the gas pedal hard. I reached the seventh floor and burst through the doors before they even opened, and I ran down the hall, leaping over the second COVID-19 security checkpoint in a single bound. Several nurses dressed from head to toe in personal protective equipment and carrying Haldol syringes began to chase me, but I lost them in the stairwell, jumping into a ventilator shaft and dropping out right in front of the reception desk.
I checked in and sat down. There was one other patient in the enormous waiting room. Then there was just me. I waited. And waited. And waited. Finally, someone came out and told me that they had changed their minds, and I had to go to the eighth floor. Ok. Whatever.
On the way out of the room, I saw this guy in a mask. Somehow, and this part is true, I figured he was Dr. Roland Dadice. I asked, and he was. So we went down the hall and up in the elevator, and he started to tell me about his clinical trial. Then, I checked in again, and he went into the office area. I was called quickly this time. Before anything else happened, a tech drew about 6 pints of blood that they would need for all the pretrial testing.
Then the doctor came and talked about the trial more, this time with K/BWE on speakerphone. INBRX-105 will probably be a fair bit nastier for me than pembrolizumab. It may give me flu-like symptoms for two to three days after taking it, and I will get it every two weeks. I signed the consent. I also met his trial coordinator, and a nurse. They would be doing the organizing and communicating of practical details, which is good, because organization and clear communication do not seem to be Dr. Roland Dadice's best skills.
So, here I am. Don't worry. I don't plan to go anywhere soon. I plan to continue to see my patients. This is a slow-growing tumor that has already been with me for years even though I didn't know it. If INBRX-105 does not work or is intolerable, there are plenty of other trials going on, and, even without successful treatment, I may still be here for years.
It ain't even close to over, Bartleby!
It ain't even close to over, Bartleby!
(1) It's like they took out the laryngo part. Seriously, this sub-specialty is called otology. They must be in training for decades.
(2) The incus, malleus, and the stapes are together called oscicles. To me, the names sound like an Ancient Roman rock and Roland band that would open in the Colosseum before the Lion-Eating-Christians show. "And won't you give a big round of applause to Incus, Malleus, and Stapes--The Oscicles." Incus is great on the drums.
(3) Best Barber Ever. Not.
(4) A tonsure is a special haircut that monks used to have. I'm ahead of my time. One day, and it may not be in my lifetime, but it will probably be in the Professor's lifetime, this haircut will be in. People will look back and look at photographs of me and comment how cool Great-Great Grandpa Tom was.
(5) There are upsides to this if you look at it. For instance, I have to wear a patch if I don't want to bump into things. I look better with a patch. It covers up the giant radiation crater in the right side of my face, and I kind of look like my old self.
(6) 'All the Cross-eyed people,' to the tune of 'Eleanor Rigby,' by the Beatles
Ah, look at all the cross-eyed people.
Ah, look at all the cross-eyed people.
Eleanor Rigby picks up the rice in a church where a wedding has been.
Falls on her chin. . .
(7) I always fall asleep in the MRI despite the insane clattering. It's the sort of thing that makes me wonder if we shouldn't have sent the Professor for drum lessons. I might sleep better at home.
(8) Actually, it was a different kind of accent. But saying it was Dothraki is more fun.
(9) That, and the fact that the ever-present double vision is making my cancer feel much more real to me is part of why this update is so late. It took me a while to get my balance again.
(10) According to Merriam-Webster's Collegiate Dictionary, "tumoriffic" is an adjective that describes an absurd scenario involving cancer. (11)
(11) Made ya look - ha ha!
(11) Made ya look - ha ha!
Not How You Wear a Mask
