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The big red dot has gone.
Yay!
In its place now are TWO red dots.
They are in roughly the same area of my right eye's vision, maybe slightly higher. The two dots are different sizes and the smaller one sits atop the larger, evoking in my twisted mind the creepy image of a blood-stained snowman.
In another week I will be seeing a retinal specialist about this. Based on what I have been told (and what I have since read on the Internet) I won't try to get in with the ophthalmologist again. All they do is examine you and confirm you are seeing red dots. The treatment is to wait several months and hope it goes away.
If my vision continues to change (or it looks like the dots are multiplying) I will of course go straight in. But right now I would guess the excess fluid partially detaching my retina has split into two smaller pools.
Everything else has been pretty good the past few weeks. No brain shocks, no headaches, very little ear ringing. And still no sign of the Eastern Phoebe that drove me batty last year. I can only imagine what that little creature would have done for my red dot.
Lady Macbeth (almost) stole my words yesterday morning. A big red dot appeared in the center of my right eye's vision as soon as I woke up. Hard to miss, you have to say. If I closed my left eye and looked at a sheet of white paper, I saw a sheet of white paper with a big red dot. Nice way to wake up.
The circle is still there today, everywhere I look. Big red dot. I look at Noah through my right eye and I see a dog with a red dot for a head. Every meal is a plate of big red dot. Yum! The sunset was a big red dot.
So what happened to me? (Dot, dot, dot.)
After a panicky scramble to get to an ophthalmologist, fearing the worst (that the tumor is making an aggressive move again), the diagnosis was instead "central serous chorioretinopathy" which is a fancy way of saying "big red dot." Fluid leaks under the retina and it accumulates into a kind of reservoir when it should keep draining away. The reservoir of fluid, right in my line of sight, results in distorted vision and the partially detached retina creates the illusion of the big red dot. It's really annoying to have the damned dot everywhere I look. I may resort to an eyepatch. Arrrrr!
I have notified my neuro-ophthalmologist in the meantime of this development, and I'm waiting to see how he reacts to the news. I did not have a visual field test yesterday. The visual field is very precise for tracking the tumor's regrowth. There may be one in my near future. Considering my history, I don't know why I wasn't given one yesterday.
Also on my call list is my endocrinologist because taking steroids (which I have to do) sometimes plays a role in the development of big-red-dotitis. Often people who abuse steroids develop this condition, and it's almost always associated with large doses of steroids. (Think body-builders or cyclists.) I take the smallest "starter" dose every day (a "maintenance level" of 10mg, then 5mg of hydrocortisone) which is supposed to replace what my body won't naturally produce. So I don't think it will be because of the steroids but I will consult with the endocrinologist anyway.
Very likely is that it could be stress-related or—more specifically—a side-effect of my coughing asthma which gets particularly bad during allergy seasons. Medicine can only treat so much and every so often I just can't stop a bad attack. In the past weeks I have been sidelined for several days twice with severe asthma attacks due to dust inhalation. I think this is the culprit.
My big red dot will be in the center of my right eye's vision for about the next six months, at which point it's supposed to go back to where it belongs in cartoon land.
Okay, enough people have been bugging me for an update. There have been some interesting developments, but in all honesty I have been cutting myself off from everything until I finish my latest composition (a clarinet concerto) due in less than a month. Blogging eats up time, you know!
Anyway, and most importantly, the Eastern Phoebe—the irritating songbird who singlehandedly (singleclawedly?) derailed any hope I had for composing music last summer—has not returned. In the endless turf wars of the avian community it looks as though Chipping Sparrows, Woodpeckers and Scarlet Tanagers have forced my dear Eastern Phoebe out of the high rent district. Don’t let the branch hit you on the way out. If you come back, please learn more than three notes.
In a few sentences, this is my current situation. Next round of tests is in July with the neuro-ophthalmologist. With regards to the tumor re-growing along the optic chiasm, these tests are the most telling. Two months ago my numbers were good with the endocrinologist who is overseeing my hormone replacement therapies. One level was slightly low and it is being re-checked next week. The tiny speck on my MRI may or may not have grown, depending on how you interpret the cross-sections of the latest imaging. It looks about the same to me, for what it’s worth.
Probably as a side effect of the hormone replacement therapy, I find myself more susceptible to allergies, asthma and infection. Over the past few months I have fluctuated several times between healthy and bedridden. Dust, pollen and Noah’s slobbery kisses can be downright lethal for my asthma. If I get the wrong stuff in my lungs I can be out of commission, hacking endlessly, for days. After my bout with pneumonia this past winter I have learned to keep my hands clean at all times and to recuse myself from dusty yard work or dog brushing. I just can’t do those things anymore. The thought of extreme exposure without my rescue inhaler scares me.
During the last weeks of the symphony season I had a recurrence of the “brain shock” phenomenon. But now they are gone again. The painful electric shocking sensation I get when transitioning from active to passive mindsets is deeply unsettling when it is happening frequently. I still don’t know why they happen. Or why they go away. I am not taking any medication for them (for a while I was on Trileptal). This is one of those cases where, if I had been given a new prescription this time, I might have thought the shocks went away because of the medication. But I decided to “ride them out” this time and—lo and behold—they went away on their own.
I don’t know what else to do if the shocks come back again. (I assume they will.) They are so terrible, yet they are over in less than a second. Once the shock has passed, there is no telling if the next one is going to be in five minutes, five weeks, or five months. I don’t know what any doctor could do about this. Certainly, I don’t want to add another medication just in case I have an unpleasant nanosecond in the next few months. At a certain point, you have to weigh the pros and cons of trying to fight something. Trying to make plans for the next brain shock is like knowing you are going to die someday. You know the date is out there, but what can you do about it? Go on with life as normal. Live happily. It’s never perfect, but so what? The ability to live any life happily comes from inside you and it’s not related to things you can’t control.
Quick update - My regularly scheduled appointment with the endocrinologist (who is quarterbacking my hormone replacement therapies) went very well. It turns out my suspicion about low potassium levels last December was correct. I have been taking a supplement since then (which has partially helped my right arm collapse issue) but my level still measured at the very bottom of the "normal" range. He gave me the green light to double my dose to get the level in my blood to rise some more.
My thyroid level is still too low, so he made a slight adjustment on that medication too. He said I won't notice any change for a month, and we'll re-test everything in two months. Endocrinology is tricky. In my estimation, good endocrinologists are not cowboys but rather people who tinker and stand back for a while. It takes lots of patience, from both the doctor and the person being treated. Hurry up and wait.
I have been patient throughout this long process, doing exactly what the doctors have ordered, and -- all in all -- things are working. At times it was downright scary or even hopeless, but I never wavered from what I was instructed to do in terms of convalescing, healing and returning to a normal life. In my own life I do have the ability to put myself in the hands of others at key times, and I don't think everyone has this in them. Find someone with more knowledge and experience, then LISTEN and TRUST and FOLLOW. A lot of people don't know when it is the right time to do this.
The other short update relates to my brain shocks (the painful electrical detonations inside my head which may or may not be related to Epilepsy). At their worst, about a year ago now, I was having as many as 20 or 30 a day. Several months ago they completely vanished or were so reduced in their intensity I didn't even notice them. Well ... recently they have returned. For the past month I had one shock every week or so.
Yesterday I had five.
In the space of three hours, I counted five medium to very large shocks. The first one was like a wave, three or four big ripples that felt like the left half of my brain was melting. (I imagined an alien ray gun pointed at my head; that's the image I got.) The next few were all about the same: sudden bursts of searing pain behind my left eye, about as far back as where my left ear is. They are so nasty partly because they disappear as quickly as they show up. It feels like you are being sucker-punched. Zap!
Two things come to mind right away: I was tired. I did not get the nap I really wanted. Also, this week has included perhaps the heaviest performing schedule yet since the surgery. I was playing principal all week on big, heavy reeds. With the spring weather helping my sound I was playing great, but in doing so I was using more air pressure.
In the past I have been wary of pushing it this much. This is mostly because I'm afraid of the hole in my head springing a spinal cord fluid leak. I wonder about this from time to time: How many professional oboists have had my kind of brain surgery (twice) and then gone back to the stage? Anyway, in all honesty the music was so good this week I couldn't hold myself back from throwing myself into it. I loved what came out of my instrument, but by the time last night's concert was over I had paid for it with those five enormous shocks of pain.
I always tell myself that each day is a step in the right direction, to keep plowing forward and someday I'll get there. My gut tells me the brain shocks will die back down again now that I got a good night's sleep and I have a few days off to recuperate. I'll live, and compared to a year ago or even six months ago I am so much better than I was before.
My pneumonia has turned the corner, and now everything feels like a really terrible chest and head cold. My doctor extended my antibiotics for a few more days to make sure the infection in my lungs will not return. It doesn't feel like I have coughed everything out of there yet, but it's not for lack of trying. The past few days have all seemed about the same. Low energy. Runny nose. Cough, cough, cough. This morning I took an extra dose of prescription cough syrup, bundled up and headed to the hospital for my brain MRI re-check.
I haven't seen the radiologist's interpretation of the MRI, but I have—to the horror of my doctor friends—looked at the images myself (which I took home on CD). As good as I am with my Mac for using Final Cut Pro, Motion, Photoshop, and composing software like Sibelius and Finale, I have acquired comparable skills with OsiriX. The latter is a free program that enables you not only to view all your scans but convert them into three-dimensional spaces where you can literally fly around the inside of your head as you might in a video game. It is purely for entertainment purposes (at least for me) and is not for serious diagnosis. But I have learned a fair amount about parts of the brain by studying my own MRI scans from before and after the two surgeries to remove the craniopharyngioma. It's fascinating.
This was (by my count) my tenth MRI or CT scan since October 1, 2009. Most of them occurred during the first panicky month when no one knew what I had. Since then, I have had them at increasingly wider gaps apart, the last one being six months ago.
This morning, I learned two tricks: bring earplugs (they really help) and check the box saying you are claustrophobic (so you have a better chance of being assigned the nicer MRI machine). There was an old ad where Ricardo Montalban said the seats of Chryslers were made with "Corinthian leather" which sounded so exotic. The larger and brand new MRI machine at my local hospital has a table made from what I would guess is something like Corinthian leather. Soft and luxurious. Feral kitten, perhaps. I hoped by checking the "claustrophobia" box I would get this machine today. I was so tired of MRIs!
As I put my earplugs in, my favorite technician came into the dressing room to retrieve me.
"Oh, it's you!" she chirped. "We saw you with the symphony a few weeks ago. I'll tell them to switch to classical music."
"Okay."
Beyoncé would have perked me up more, but I hate to burst anyone's bubble when they get excited about classical music. I was escorted into the newer room with the luxury MRI machine.
Sweet!
The last time I did have a serious problem in the smaller machine and—even though I don't have the same claustrophobia issues today—I was elated to see I had snagged the roomier model. With the Corinthian leather. In its own way this was like being upgraded to a suite instead of a standard room at a hotel when you had just paid at the front desk with coupons. As I settled onto the lush, padded table I heard the speakers click as the technician searched for another radio another station. A moment later the final scene from "Don Giovanni" piped into my headphones. The Commendatore was approaching and knocking on the door. The technician covered me with a blanket and clamped my head to the table.
COMMENDATORE
Turn thee, ere heav'n hath doom'd thee. There's time yet for repentance!
DON GIOVANNI
For me there's no repentance. Vanish thou from my sight!
COMMENDATORE
Dread then, the wrath eternal!
DON GIOVANNI
Away, thou spectre infernal!
COMMENDATORE
Yes, repent!
DON GIOVANNI
No!
COMMENDATORE
Yes, repent!
DON GIOVANNI
No!
On that note, I was slid deep into the MRI machine, resting on Corinthian leather.
I have had enough of these to tell subtle things from the tech staff regarding how things are going during the long test. There is a mirror titled at 45 degrees above your eyes which allows you to see out the machine and into the other room with the monitors. I could see my tech going through the motions, then—after he had injected me with dye and told me it would be just six more minutes—I saw him spot something on the monitor and call over the other technician. They discussed something, then picked up a phone. A third person wearing scrubs came into the room shortly thereafter, also peering into the screen.
Don Giovanni, long burning in Hell, was now the Mozart Clarinet Concerto. The music quit inside my headphones and the tech's voice spoke, "We're going to do a few extra scans to be sure we got something. Another ten minutes. Just relax and stay still."
"Okay."
All three of the techs watched over the monitor as the loud noises erupted from the MRI machine again and fought with the Mozart in my headphones. It reminded me of Kraftwerk, quite honestly. Kind of trippy.
"You're done," the voice said after a few minutes. "You can change back into your clothes."
I gathered myself out of the machine. "Are you calling for a hot read? Any flags?" I asked, intentionally baiting him.
"Your surgeon will be in contact," the tech said, which is the only thing any technician is allowed to say.
As soon as I entered the dressing room, another man staggered in after me, also wearing a gown. He had just had an MRI too and he was visibly shaken.
"Those are rough, aren't they?" I said to him.
"I'm used to it," he said. He looked disheveled and about ten years older than me. Then again, I look that way too. On both counts.
In the way patients tend to make small talk in waiting rooms, I offered, "I had a brain scan. Re-check."
The man looked me up and down. "Me too," he said, then turned the key to open his locker. "They called a hot read for me. Again. Looks like 'fluid,' they say. Again. And we know what that really means, don't we?" Then his tone of voice became more angry. He continued icily, "Well OF COURSE there's going to be all this shit in there if they keep going back in my head. Procedures over and over and over. Never any end to it. Never any good news. Never."
I wanted to hug this man. I realized the scan the trio of technicians were hovering over in the tech room was not my scan at all. It was this other man's. I was the lucky one today (or so I have surmised so far).
He also said, "I hate that smaller machine, you know. I hate it. Feels like you can't get out. I'm so sick of it." He disappeared behind a curtain.
Right then I vowed I would N.E.V.E.R. say I am claustrophobic again unless—on that day—I am truly feeling that way. And even then I might not because there are certain drugs I can ask for. I am a larger person than most, but I am also getting what are considered "healthy" scans. Others are more sick than me and I can suck it up for forty minutes if it will make the time easier for them. I have never felt so selfish.
In the waiting room this morning there were people with me (the odds say this is correct) who are dying of something, and dying right now. Those are the people who are looking for dignity. Those are the people who are looking for special treatment. Those are the patients who are looking for and deserve a little luxury right now, perhaps in the form of Corinthian leather caressing them as they endure yet another MRI. I'll never stand in someone else's way for that again.
Oh, what a night.
I think every one of us can recall at least a few "worst nights of my life"—those nights of pure agony where sleep is impossible, pain is immeasurable and morning never comes. Last night, for me: Oh my God.
My rapid decline has been as stunning as it is frightening. Just a few days ago I was feeling so optimistic I wrote an update which (in retrospect) I wanted to serve as a capstone or endpoint to me as a patient before my more mercurial side took over again. Apparently, my immune system has begged to differ. My issues are so intertwined I am like a house of cards; one wrong move and everything crashes down.
I am changing my name to Sisyphus.
It was just over a month ago—when I flew to New York to have my hand splint made—that I took my first brave steps out into the real, randomized world. Before then, we were careful that my healing would be as seamless as possible. My environments were controlled and I always had an exit strategy, mapped out hour by hour. I lived in my house in Grand Rapids watched over by MJ. I went back to work at the symphony using a careful plan to reintroduce the amount of stress gradually so the (literal) hole in my head would not open up. The bulk of the summer was spent in near isolation at our cabin in the northern woods. All of this was designed to control my environment so one random element (in the largest, abstract sense) would not derail my straight line of healing. Just a month ago when I flew to New York it was indeed jarring to be back on the streets, inhaling bus fumes and maneuvering past people wearing heavy fragrances. (In a symphony orchestra the use of fragrances is often restricted or banned.)
I survived the trip to New York and was emboldened by the notion that I could do normal things again. So, little by little, I did. I don't know if I can pinpoint the exact moment I decided to throw caution to the wind but sometime during the past few weeks I felt finally good enough to do anything.
When I went to Florida to premiere my new quartet and play the Mozart I must have picked up a germ or infection in the midst of all the plane rides and hotels. My immune system was more susceptible because I was pushing myself to the limit (something I had planned to do). In another strike against me, I had to use my diabetes insipidus medication liberally (the one that prevents me from needing to urinate every ten minutes). Because I didn't have the natural "breakthrough urination" every day, I was more likely to hold germs inside my body as opposed to flush them out. I don't know if I could have done anything differently with that particular medication; it's just the way it is when you travel.
When I returned home, I felt victorious having reached another goal. Yet I knew I was ever-so-slightly under the weather. In what was probably the tipping point, I decided to push myself just a tad more ("set another goal slightly out of reach") and I went cross-country skiing, thinking the fresh air would do me some good. It was only for an hour, and I felt on top of the world. But by the next day something wasn't right.
A cold, I thought.
So I bundled up for the next few days. Then the coughing started. When I played the second rehearsal of Beethoven's "Eroica" Symphony last Wednesday I had to bolt from the stage with the strangest sensation that I had to throw up. Yet I didn't feel sick in my stomach. I just wanted to heave something. I coughed for a while and then returned to the stage. Two nights later I was in the Emergency Room.
After last night (and with the help of antibiotics) it's finally coming out of me. For anyone who has experienced bacterial pneumonia, you know the horrid sensation of a foreign, sticky substance inside your lungs. As you lie still trying not to cough you can hear the air pockets inside your lungs opening and closing unnaturally, sputtering and clicking as barnacles and mussels do after the tide goes out. All night I hovered over the porcelain, my lungs regurgitating chunks of brown, white or red. Bit by bit. It all had to go and there was only one exit.
I must have finally collapsed by 5am. I slept a few hours. This morning I am supposed to go back in to see my primary care doctor for a follow-up appointment. Abdominal muscles, back muscles and especially external oblique muscles are so painful even touching them with one finger is excruciating. Yet that isn't the worst of it. The hernia on my left side (which has been surgically repaired twice and was a major source of pain up until five years ago) is now suddenly searing again. I wonder if the heaving and coughing from last night has caused the surgical mesh to shift or pull out of place again. It hurts too much to feel down there right now, but I will ask my doctor today to check it.
House of cards. The six-month MRI on my brain is still scheduled for Thursday. I never thought I would say this, but the MRI is the last thing on my mind right now.
Well, so much for setting goals just beyond my reach. All this pushing myself has taken its toll. I have pneumonia again.
I just got back from the ER where MJ drove me this morning at 4:30am. I staggered in there coughing so hard I thought I would see blood. For the past day I knew something was wrong. I didn't want to eat anything, and I didn't even want to drink anything. I threw up water. When I got to the ER I was very dehydrated with a temperature of 102. They were certain it was the flu (or possibly strep) but when those came back negative they ordered a chest X-ray. Pneumonia.
Thankfully, this was caught very early and "7-10 days" is my turnaround time. I'm taking an antibiotic for a few days, but other than that I am confined to bed rest with plenty of fluids. I'm very tired, but more in a disoriented kind of way. I just want to lie down and close my eyes, let the world do its thing for a while without me.
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