Friday, May 28, 2010
It has been a while since I have posted an update, so I thought I would make a brief progress report regarding my rehab. I finished the season with the symphony without collapsing on stage and MJ, Noah and I are up north trying to focus on one thing for me: heal. Noah just passed his tenth birthday and -- for a doggie just hours away from death two years ago with failing kidneys -- he remains a model for me in how your spirit and your will to live must form the basis for any recovery. He inspires me every day and that is not an understatement.
For the most part, I can only say things are pretty good with my health. My brain shocks, for example, have nearly vanished during the past two weeks. They have disappeared as mysteriously as they had arrived. Maybe the medication is finally helping. Or maybe the shocks went away for another reason. In another month I may stop the medication to see if there is any change for the worse. There is plenty of uncertainty, but in general I would have to say things are getting better each day. I am learning what my limits are as well as where I can push it. MJ follows my progress closely and, along with Noah, I would not be where I am today without her. She also inspires me every day and that also is not an understatement.
Just the other day, for example, she declared me fit for an errand into town where I would pick up two more outdoor cushions from one of the bargain home improvement stores.
"Sure," I said when she asked.
We had bought two on clearance a few days before that but now my mission was to drive back and get two more so we had a matching set of four.
The store had only one left.
I wandered through the store and finally flagged someone in a uniform who looked like he wanted to help.
"Hi," I said. "There was only one of these left. Is there another somewhere else in the store or is this it for the clearance items?"
"Let me go check," he replied.
I followed him.
He walked back to the original bin.
"Nope!" he said. "It looks like they're all gone."
"Well, I knew that," I said. "This is where I got the last one. Do you have any cushions like this in the back, or in another store?"
"Ah," he replied. "Follow me. We'll have to look it up on the computer."
I followed him.
We arrived at a desk in the middle of the store with a computer.
He clicked, tapped the keyboard and scanned with his eyes. I waited.
"Yup!" he said. "There are five more in the central warehouse. We might get one."
I said, "Or . . . or they might go to another store?"
"Is there any way to make sure one of the cushions comes to this store?"
"Hmm. Tell you what. When you check out at the cashier, tell them you want one more. Then the cashier will fill out a form that goes into the system, see? Once it's in thesystem it will generate a message -- called a 'do' command -- which comes to . . . well, actually that message will come right back to me. Then I'll make a request on the computer here to make sure one of those cushions comes to this store."
I took all of that in. Then I asked, "Why can't you do that right now? I'm telling you I want that cushion!"
"No, no. First it has to go into the system or I won't be able to do it."
I wandered around the store picking up a few more things we needed.
When I checked out I forgot to tell the cashier.
In the parking lot I realized my error and went back inside with my receipt.
"Hi," I said. "I just bought your last cushion on the clearance bin and I need one more to match it. The gentleman over there said to tell you so you can request another."
"You need to do that during the purchase," she said. "This is after."
I ignored that and said, "You have five cushions in your central warehouse. They are there right now. May I please have one of them?" I was miming karate chops with my hand to accentuate various words.
"Yes, I guess. I guess we could do that. But I'd have to make a special call."
I mention this funny vignette (which happened almost word for word) because, while driving home, it reminded me of some of the convoluted experiences I have had dealing with the grand beast that is a modern medical establishment. Though many of the roadblocks in medicine are organizational necessities, from a patient's perspective it can be frustrating from time to time to feel as if you need something that is right there and yet out of your grasp with just a little bit of red tape separating you from your proper care. Yet results are what count and I seem to have fared pretty well so far.
And I did drive back yesterday to get that other cushion.
Sunday, May 16, 2010
After speaking with me on the phone in person, the neuro-ophthalmologist has now decided four weeks is "way too long" to wait until my next appointment. Tomorrow morning at 7:30am I will be squeezed in for another round of tests.
The sudden vision blur is the main cause of concern. The good news is the vision changes do not involve light or color loss which would be a major red flag. Blurriness can be caused by many things including simple fatigue. It could be my own hard-headed attitude about returning to a normal schedule while my body is still catching up and adjusting to the hormone replacement therapy. The vision change is sudden, though, and this is the cause of (at least mild) concern.
I don't think anyone is too worried right now but I am once again grateful for my team of doctors who are watching over every little nuance of my recovery. There are about three hundred cases of my tumor in the United States annually—literally one in a million—and most of them are children. I am certain the rarity of my case plays into the medical team's extra care. If I have a sudden blurriness, no doctor can say, "Eh, don't worry about that. Most adult papillary craniopharyngioma patients in their early 40s get that six months after surgery." There aren't enough patients like me, I suspect, to casually throw away caution when little red flags present themselves.
In any event, we shall see what happens tomorrow morning and I will let everyone know. Thank you so much for reading!
Friday, May 14, 2010
The determination from the neurologist is that there is nothing critical "to do" right now regarding the change in my eyesight. I had an MRI just days ago which was -- for the most part -- pretty clean and my EEG was inconclusive. The next battery of tests is only a month away and it's not like I am in any pain. Short of an operation, radiation, chemotherapy or a change in medication, there is little else "to do" besides make a note of it. The change in my eyesight has been duly noted in bold on my chart followed by an exclamation point.
On the other hand, I have another brief observation this morning that raises more questions. My right eye continues to be fuzzy in the distance, but now my LEFT (good) eye is fuzzy close up. Maybe if I stand at a 45 degree angle everything will be in focus?
Last night during the break backstage, I was explaining my current symptoms to colleagues.
"Look at that clock over there," I said while pointing across the room. "When I close my left eye the numbers split in two and the lines are fuzzy."
Mary Jane shook her head and said, "Are you kidding? I can't even see it's a clock. It looks like a snowball that far away. Be grateful you know it's a clock."
She was half-joking of course, but it might have been the first time I really considered what "needing glasses" means. All my life I have had P.E.R.F.E.C.T. vision, like everything is in high definition from every distance. I may be colorblind, but clarity has never been an issue before. Maybe I shouldn't confuse the issue of getting older and seeing the first signs of eyesight deterioration with the fact that a few months ago a recurring tumor was attached to my optic nerves. The issues could be related, but they could also be separate.
I have a direct dial to my neuro-ophthalmologist's assistant. She is the one who usually administers my tests anyway and she does the bulk of the interaction with me. She knows me and my file cold. She has welcomed me to call anytime. She has never rushed me off the phone and she always consults directly with the doctor if there is a question about anything. My instructions for now are to continue making observations about any tiny variations in my vision. If there is any sudden concern or pain I am to go directly to Emergency.
This weekend I am still able to play my oboe, but if my right eye gets any worse I may have to resort to an eyepatch again. It is the last Pops concert of the season and I appreciate the irony that last September—on our first Pops of the season—I resorted to an eyepatch on my other eye before it got so bad Mary Jane had me make an appointment with her eye doctor to see what was causing the problem.
Here's a new image I found of the original craniopharyngioma, taken 10/1/09. At this angle, I wonder if it was my horrible golf game that caused this in the first place. (Apologies for the strange humor. I'm in a weird mood today):
Wednesday, May 12, 2010
A small update - I had a sudden vision change today and these are always supposed to be reported. I was at a meeting which included a power point presentation. My vision is usually excellent but I was having trouble reading the words and numbers on the screen. I tracked down the problem by performing the most basic test I do all the time: close one eye and then close the other eye.
When I closed my left eye the vision in my right eye was completely blurry. This is a sudden change because there is never any difference of clarity between my eyes. I confirmed it over and over, looking in different directions.
I sneaked (snuck?) out of the meeting and drove straight to the neuroscience wing which was just a few blocks away. I didn't even have a chance to call, and within five minutes of reporting my sudden symptoms to the receptionist I was inside being interviewed by my neuro-ophthalmologist's nurse.
I am not in any pain and I can't think of anything that precludes me from doing anything normal. Unless I want to become a professional eye chart reader I'll be okay, and my career as a pilot has been over since I started taking medication for seizures, extreme hypertension and exploding head syndrome. I am on the couch right now reading and waiting for a phone call (perhaps with instructions) from the neuro-ophthalmologist. Thank you for your thoughts and prayers!
Saturday, May 1, 2010
The most recent MRI certainly looks good on the tumor front. Excellent, as a matter of fact. Check out this "before" image:
And now here's the image from a few days ago:
No answers yet on why these electric brain shocks persist, but it's nice to see a clean scan in the area the craniopharyngioma tumor originally presented itself. Yay!