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Knowing just when to put up a new blog these days is hard. The most immediate dangers I faced are behind me unless the tumor starts to grow back. Medical updates are more general; I have good days and bad days, dizzy days, hot flash days, freeze flash days and sick days that occur more frequently because of my overall condition.
It feels wrong to write a blog every time I have a bad day because there are so many of them. Good days always follow. The other reason I haven't blogged recently relates to how fruitful the past few months have been for composing. I am writing an ambitious 35-minute cello concerto and it takes up all my spare time. Composing music requires a certain abstract mindset that is hard (for me) to nurture to a point where I can produce something good. Composing words is a jealous mistress to the other half of my creative self. Once I get going with words the music usually dries up. With a deadline and a lot left, I don't want to risk it.
But sometimes things happen that are too personal not to share.
I have had two hernia repair surgeries, in 1999 and 2005. I have barely thought about them recently but over the weekend I felt a rip, then a numb pain in my left inguinal area, which is just above the hip. In the shower on Monday I felt a bump down there. If the area had just given way again, I was done playing the oboe for a while.
"Call the doctor," MJ said.
I did. They squeezed me in.
"Drop your pants. Your underwear too," my doctor said.
I did. He performed a fairly thorough examination but could not find a new hernia.
Likely what happened was the surgical mesh I have implanted in me—holding my lower intestine in place—tore away slightly from the tissue to which it was attached. There are no sutures. This has happened a few times, and it always reattaches to the surrounding tissue again. The mesh is a free-floating foreign object under my skin and it shifts around.
My doctor then ordered an ultrasound, which he has never done before.
"Why?" I asked.
"To rule out some things."
I had heard that line of malarky before.
The next day I had the ultrasound. I assumed they were looking for internal hernia tears, but it wasn't until I got to the imaging lab that I read the written order: "Ultrasound: (L) and (R) scrotum."
Yup.
In the waiting room I had a few minutes to think through what was about to happen. Wait ... how are they going to ...
"Alexander Miller?"
A pert technician poked her head around the corner. She asked me to follow her. I did. She was somewhere between 24 and 25 years old, if I had to guess. Attractive. Virgo, maybe. Her wavy auburn hair cascaded just below shoulder length and it danced as she walked. This was very interesting because I am married and baseball square of the hypotenuse.
She led me into the exam room and dimmed the lights.
"I will exit the room now. Take off your pants. Underwear too. Lie on the bed, covering yourself with the sheet."
I did. It had been a week since my last confession. Crikey.
She came back inside with a towel. She closed the door.
"Pull your penis onto your stomach and cover only your penis with the towel. Leave your scrotum exposed."
I did this, then said, "Okay."
She pulled the sheet down and, before I knew what was happening, she slathered a warm, slippery gel all over my scrotum. Then she slid the ultrasound camera slowly up and down, trying to find the correct angle, up and down. It felt good but a moment later my instinct was to be more aware and proper about things. Still, the initial moment was permanently etched into my history as a married man now. The sheer luxuriousness of it had caught me off-guard.
She didn't speak and I tried to put my mind elsewhere. I picked up the reading material I had brought to the waiting room: Carlos Salzedo's "L'Etude Moderne de la Harpe" ("Modern Study of the Harp") where I had been studying details about the complicated harp notation in my cello concerto.
The open page discussed advanced finger techniques for the harp. The first was:
"Aeolian Flux, obtained by gliding in the center of the strings, upward with the 2nd or the 3rd finger, downward with the thumb, the hand wide open without any stiffness."
The next one:
"Aeolian Rustling: The hands, pressing the strings, are drawn slowly across them, fingers close together in the horizontal position."
I clawed to the next page—any page—and read:
"Falling-Hail Effect: by gliding in the center of the strings, with the back of the fingernails; in descending, the palm of the hand inward; in ascending, the palm of the hand turned outward. This sonority is finest when played softly and rather slowly."
The technician finally spoke. The machine was having technical difficulties. We needed to start over.
So far, outwardly, I was doing okay. I set down my reading material and thought about all the men who had gone through this, specifically the men this particular technician had given an ultrasound to. I am sure she had seen everything, every reaction. Knowing men as I do, I am sure more than a few had made jokes—about if they needed to tip her, about if they needed to buy her breakfast—each of them thinking they were being so very original, the first man ever to think of a joke like that. If men have a signature fault it is probably the inclination to mistake crassness for cleverness, or to use these two opposites interchangeably.
As is me, I wanted to be the most evolved of them all, the nicest, the one man who got through this better than all the rest, the one she would remember as the most decent. She didn't speak much, probably for the best, and I didn't either. I did ask a few things about the machine, about anything technical I could think of, but when my questions ran out I just lay there, thinking of as little as possible.
A short while later the ultrasound was over. She left the room. I was happy I had made it through with my dignity in tact. I am sure that the technician, after administering hundreds of these tests, had seen most men develop erections, and I am sure she is then supposed to say something about involuntary reactions if the man starts apologizing. But I say men can control that. I have always been able to. It is only 99% involuntary.
Afterwards, she came back in the room with my checkout papers. She could have led me right out, but instead she made small talk. She asked questions about my brain surgeries and we talked for a while about that. She smiled. The waiting room wasn't busy. We talked about life in the symphony, then I asked her about her job and asked more questions about the equipment. She talked some more, and—probably in my own mind, male that I am—I thought her demeanor suggested a certain amount of respect for me regarding the subtlety of how I had gone through this. Wordlessly, I had passed with flying colors.
She knew during the test that I was trying to treat her like a lady, trying not to take advantage—mentally—of the unusual situation when it would have been so easy to do so. I imagine some men lie back, sigh and develop a stupid grin on their face during a testicular ultrasound, in full view of the attractive technician, not understanding the depth of the faux pas, thinking only of what they were going to brag about at work the next day. My goal was to be decent, to be one of the few who didn't, for her benefit, out of respect for her professionalism, and I know she picked up on this. Technicians are hard workers. We all work hard, of course, and finding small ways to pay simple respect back and forth goes a long way to smoothing over all the other fleeting moments of indignity that leave a sour taste.
Three days later my doctor called. The ultrasound was negative. Negative for hernia, and negative for testicular cancer.
My annual MRI was this morning. Even though I have not seen the technician's report, I think my Magic 8-Ball says: "ALL SIGNS POINT TO YES" (Yes is good.)
To the ongoing chagrin of my doctor friends, I studied my brain images this morning and they look the same as last year's. The pituitary area still has that darned spot that was the subject of debate at Tumor Board, but it has not changed or moved in almost three years. It shouldn't be there, but at least it is dormant. The sleeper cell in my own brain, perhaps.
Also, the plaque from my "T2 Flair" series of images looks exactly the same.
Long story short, my ongoing issues with dizziness, ennui, yo-yo testosterone and pandiatonicism all likely stem from the medications and hormone replacement therapies, not the tumor itself.
This is both good and bad news. If the tumor had started to make a move, we would have an explanation and a course of action. With a boring MRI result, I have to decide whether to tinker with my meds or just accept things as they are. As I wrote before, it's not so bad, but I know what "healthy" feels like and I'm not there.
Still, I'm not dead—which is a plus—and I have good vision in both eyes which is even better during football season. For now, I'll take it.
We are now at the Cabrillo Music Festival in Santa Cruz, and everyone who has not seen me in a year has been asking for an update. In a nutshell, these are the facts:
Next MRI is in a few more weeks. (The last one was 11 months ago.)
The partial retina detach from chorioretinopathy is holding. A few weeks ago a retina specialist checked me out. There is still a scar at the back of my right eye, and along with it a little visual defect. It won't heal, but it is much smaller that the original red dot.
No "brain shocks" at all for many months now. Those may be gone for good.
Managing the diabetes insipidus (DI) is really the hardest part of all this. Every day I go through the cycle of aversion to salt, extreme thirst, "breakthrough" (where my kidneys flush everything out uncontrollably), then the nasal spray with the hormone that shuts the kidneys back down again. If I don't do it right my body retains too much and I bloat up or get sick. It's important to let the breakthrough happen thoroughly. But in flushing myself out I can also become deficient in vital things like potassium or sodium if I am not careful about what I eat. Last night at the rehearsal something was not right. Medium headaches, a "frosty" feeling in my bones, and weak hands.
At Cabrillo Festival 2011, I was determined to make it through the whole thing, strong from start to finish. I did that, but I also had a severe crash (or "body shut down") when I came home. I have certain allowances for managing my hormone replacements, and last year I—um—kind of abused the privilege, turning myself into an indestructible hormone man. I felt great for the festival, but of course I crashed later.
For the past year I have been more sensible about my limits, staying in the center. I pace myself to peak at concerts, sometimes at the expense of rehearsals, but that is just where I am right now, so grateful for a work environment where my colleagues trust me to figure it out. My goal for Cabrillo this year is to play great at the concerts and then not experience any post-Cabrillo crash when we return home. I think I can do it.
I have opened my heart once again, and to this I say “thank you” to everyone who loves me. I was morel hunting this morning—one of my private passions I don’t need to talk about—and suddenly it hit me how wrong I have been approaching the last few months. My biggest fault is to clench my fists after breaking new emotional ground when in fact these are extremes, intimately combined and yet irreconcilably unrelated.
I have been steeling myself because I had a dogged determination to make it to the finish line of the fall-winter-spring season of my orchestra. Unless I have forgotten something, I have played every single rehearsal or concert required of me since last year’s Cabrillo Music Festival thru the entire main season of my home orchestra in Grand Rapids. That’s a whole year. I have cells of a craniopharyngioma floating in my brain and yet I did my job the same as everyone else, tumor or not. Yay, Ale!
The first few times I passed this test, there were parades. Ticker-tapes! Then, after a while, it got old. I’m jumping through the same hoops. The crowd thins out and I have to find the strength to do this on my own. With dedicated fans watching the same heroic act getting lamer, I get bored too. There is nothing innately fantastic about watching an anemic person get hormone replacement therapy so he can do normal things. Ale washes the dishes and the crowd goes wild! No, it’s not really that good. And yet it is.
People in my same position, diagnosed the very same month as me in 2009, have now notched as many as seven brain surgeries. I had two quick surgeries, one after the other, and since them I have been fine. This is luck, or destiny, or whatever you want to make of it. I get to go morel hunting as recently as this morning, slipping on my long boots, happily stumbling up and down steep slopes of trillium. It is gorgeous, God-given beauty, smelling the apple blossoms and wild ferns multiplying in the deep woods. Not a voice is heard for miles and miles, not a car, just the distant call of birds and the comic chatter of squirrels. I need to be here, so deep in the woods, so close to nothing in particular. I don’t need to be alone, but I need to feel close to the natural order of things for some reason.
I found only one morel today, an old one. I suspected the short morel season was already over and this confirmed it. As I unfolded my knife and cut the mushroom from the ground, I wondered if there were anything of significance farther down, any reason to dig hundreds or thousands of feet beneath that point. Then I looked up and saw only the sky, the clouds, and the glare of the sun that made me look away. Maybe there wasn’t anything up there either. Maybe it was just me kneeling on the damp earth, parting the wet, dead leaves with my bare hands and wiping them on my pants because I didn’t want to get my sweatshirt dirty because it was the one washed the day before. Maybe that was it. The solitude around me thickened like the moisture on the back of my neck. If a tree fell in the forest that day, I would have heard it.
The endocrinologist made the decision to increase my testosterone replacement therapy. We are still going to use the same gel as before, but now the dosage will be doubled. It is strange how it worked so well at first, then steadily tapered off in effectiveness over the past two years. All hormones are critical in their own way, and being without them has given me a real appreciation for what they mean to our normal lives.
I thought I was at the maximum already with the AndroGel and I feared I would need to be transitioned to injections. But I guess—in the words of a Ghostbuster—there is more sliming to be done.
I would love nothing more than a normal amount of energy going forward. I'm so tired of being tired, and I hope this will finally do the trick. There are some big projects on my plate all summer, and lots of work ahead. I can't wait to tackle all of them once I have my levels back in the normal range.
I have an endocrinology appointment on Thursday but I already know my test results. Last week I popped into a lab for my regular blood work, and since I created an online account with the hospital I can view all the results as soon as they come in. My basic metabolic panel was in the normal range, also the Free T4 test, but once again I flunked testosterone. For almost a year now this number has been low, often way too low.
Testosterone is the primary male hormone, and without it I have no energy, no natural drive or zeal. You cannot "will" yourself to do things (even mental things) when you are depleted of this hormone. The past few weeks have been very taxing, so maybe this explains why a test at this juncture measured so small. But I don't care about the reason, really. I just need to have a certain amount in my system at all times, like a normal man my age, in reserve, so I can tap into it when a concert requires more energy or when I want to stay up all night composing.
Oh, this is so frustrating. I know what some alternatives are, because I read about them last fall, the last time I failed this test. Daily shots in my stomach are one solution. Not crazy about that possibility, but maybe my endocrinologist will instead have me increase the dosage of the gel I smear on for now, or change brands.
It might be more difficult with me because this particular hormone is replaced completely. Some of my other hormones are like supplements; what I take "tops up" what my body doesn't make in sufficient quantities anymore. But with testosterone the artificial replacement starts from zero, because that's where my number would go in about a week without access to the treatment.
What's that song again? "What a man, what a man, what a man ..."
(Shrugs.) Oh well, I'll keep trying.
At least it’s always different with me. As a patient, I don’t feel stuck in a rut. I am, more accurately, an evolving set of problems. Like the last few buttery peas on your dinner plate, you want to spear them with your fork and be done with meal. But they slip to the side, scattering into different patterns. Every time you think you have things calculated correctly, something else happens. Life as a patient, every day a little different.
In the last day I have had two more of my “brain melts,” but they were, alas, different than before. Previously (this was over a week ago) they were episodes lasting about ten seconds where the left side of my brain would go numb and I could not hear out of my left ear. They came and went over the course of a few days, and they were basically gone by the time I saw my doctor on a Monday morning. No medications were added, and the explanation of migraines still makes the most sense to me.
But yesterday afternoon I had a single “brain melt” that lasted ten minutes. I can’t be sure of the length because I didn’t time it, but around noon my left ear began ringing loudly, then it went totally deaf, as if I were just smacked hard on that side. I felt dizzy, disoriented. MJ was out on a walk, and—for whatever reason—I turned to Noah and said, “Ruh-roh,” even though humor was far from anything on my mind.
I thought the event would be over a few seconds later (as before) but it kept going. I went onto the couch and put my feet up, waiting for it to pass. When it didn’t pass in the first minute, I seized the opportunity and ran through a mid-brain-melt checklist so I wouldn’t have to think backwards after it was over.
For at least five minutes and probably more, I asked myself, “Okay, wait. Is this really happening? Is half my brain and head numb? Yes, this is really happening. Can I hear out my left ear? No.” I snapped my fingers next to my left ear, then my right. No hearing on my left side. I wiggled my fingers, touching each one in both hands to my thumbs. I closed my eyes, stretched my arms out (while still lying down) and then touched my nose with my eyes closed. I missed and hit my eye, but I always miss. I opened my eyes and stared out the window into the bright sky. One eye closed, then the other. Both fine. I smiled, moved my tongue back and forth. Fine. I couldn’t think of much else to do (and I didn’t want to stand up) so I made up tongue-twisters, like “Rikki-Tikki ate a starchy quince schmaltz tart.” Everything was fine, yet the episode was definitely occurring. About ten minutes after it started, I felt my hearing come back and it was over. I stayed horizontal for another ten minutes, and by then MJ came back from her walk. I sat up carefully and felt fine after that.
The next few hours, my tingly scalp returned. It wasn’t as bad as before, however this morning (about eighteen hours later) it is closer to how it was two weeks ago: very sensitive and painful to the touch. Last night, at some point, I had another one of these brain melts. I was awake, staring at the stars out the window, thinking about words and music, music and words, and I heard the ring in my left ear, then the deafness once again, then the numbness. I was too tired to do much about it, so I just let it pass. If I had to guess, it was about the same length. Ten minutes or so.
Is there anything to do about this? I can’t think of a single thing. I live with a very rare condition (where most are a lot worse off than me) and all I can do is try to minimize stress, take notes, and get on with the non-patient side of my life. What else is there to do?
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