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Saturday, January 30, 2010

First Regular Week of Playing

I am on the couch again for the day, horizontal and resting, by executive command from Nurse MJ. This week I returned to work in a regular subscription concert, playing principal oboe for Richard Einhorn’s “Voices of Light” which accompanies the 1928 silent film “La Passion de Jeanne d’Arc.” I have played two of these concerts, and there is one more tonight. Returning on this particular piece has special meaning because eleven years ago I suffered a hernia injury and had to withdraw from the same concert. The years in between have been a test—six years of chronic pain followed by a second hernia surgery followed by cough-variant asthma, and now this tumor business with two trips inside my head to scrape it out. Everything seems designed to derail my dreams of continuing my life on stage, but—with a little help—I have found a way to persevere. The past eleven years have been wrought with physical issues, but I don’t complain because they have also been the happiest years of my life.

Here is a summary of my return this past week:

TUESDAY – An hour into the first rehearsal, blood came out my nose. I left the stage, called my doctor, and returned to the rehearsal sans oboe, just listening. The doctor visit was inconclusive. He advised “taking it easy for a few days.” I played parts of the second rehearsal that evening. No more blood.

WEDNESDAY – I took it easy all day, then went in for the evening dress. The screen was up, the movie played and we were joined by our Youth Chorus. I felt comfortable. I sounded good.

THURSDAY – I rested all day. On stage for the concert, I warmed up and felt wonderful. Five minutes before the concert I walked a few feet to MJ’s viola chair. I tapped her on the shoulder, leaned close to her ear and whispered, “Thanks for nursing me back to health.” Feeling a little misty, I sat back down to check my reeds one more time. I was ready. A minute later the chorus filed on stage. Several of them wore perfume, which is the most lethal irritant for my asthma. I hacked and choked my way through the performance, playing everything on a quarter tank of air or less. I chewed on cough drops between phrases. I don’t remember anything but MJ said I sounded fine.

FRIDAY – The endocrinologist called with my results. My testosterone is up 9,000%. I felt good about that and opened every jar of pickles in the house. He also advised me on my ongoing water retention. I have diabetes insipidus, a condition where I have uncontrollable fluid loss. I counter this with a powerful nasal spray, but I have been over-using the spray, which has led to the water retention. So instead of taking the spray on an exact schedule, I should wait every day until my body achieves “breakthrough urination” and then keep going and going until I get thirsty. THEN do the spray. But since he used the term “breakthrough urination” all I can think of are old Kool-Aid ads where the giant pitcher breaks through a wall. (“Hey, Kool-Aid!” “Oh, yeahhhhh!”)

Later in the day—and after several errands—my head feels weird. Pressure. My eyes hurt. My ears are ringing. My scalp is tingly. These are all things I felt before both surgeries and I haven’t felt these things in over a month. Late in the afternoon, I go to bed with a large bag of ice on my head, determined to play again that night.

On stage the chorus is fragrance-free, and I am grateful for that. But two minutes before the concert I slice my thumb with a razor blade from my reed-making kit. It bled freely into a tissue I grabbed, and the other oboist handed me a band-aid just in time for the tuning note. My head continued to swell during the concert and my ears rang like it was dinnertime after a barn-raising, but I was able to lay out of enough tutti sections to keep going.

I slept solidly (though with some strange nightmares) and this morning I feel better. But Nurse MJ has ordered me down for the day. She is in another part of the house right now so I could risk it and get up, but she patrols this area occasionally and I don’t want to get in trouble.

Friday, January 15, 2010

Back to Work

On Tuesday and Wednesday this week I had my first go at playing in the orchestra again. I had played my oboe a few times sparingly before this, but until now I have had the luxury of being in my house. If something didn't feel right I could walk away, but the same isn't true during a concert. I was worried about stage lights and hot flashes, about my new diabetes insipidus and forgetting to have water right next to me. I was worried about a sudden pop in my head and blood spurting out my nose (seriously). I was worried about my head spinning around 360 degrees (<-- joke).

I had a nightmare last night where I went on a camping trip but forgot to bring my medications. It was scary being stuck in the woods like that, but it was also a reminder I am returning to normal life because of modern medicine. My tumor is gone. Without neurosurgery I would be blind right now. The glands that regulate my body are inoperative, but I can manually replace everything my body will not produce. I can be normal (and I can go camping) but I need to remember my medication schedule. This is why I had that nightmare.

When I wake up first thing, I take a thyroid pill with plenty of water. Later, I take medications to control my blood pressure as well as another hormone pill. After my shower, I smear on a gel packet of testosterone. Later in the day I take another hormone pill and another blood pressure pill. Also, I use a nasal spray to regulate my diabetes insipidus. This last one is finicky because if I don't time the spray correctly, I develop either massive fluid loss (and extreme thirst) or major fluid retention (swelling of my arms and legs). I can always tell if it is the latter because my feet feel like jello and I can't wear my watch. If I let it get to that point, it takes a day or two to get back to normal (assuming everything else is taken exactly on schedule).

Aside from the minutiae of keeping my meds straight, how did I sound in my big return? Well, trying to be modest, I can still make reeds, I can still blow and I still have ears. I thought I sounded just fine.

Thursday, January 7, 2010

Search Terms

An entertaining sidelight of blogging is keeping track of how anonymous people stumble upon your site. Here are some search words people have typed into Google in the last month which have led them straight here:

“i feel pricking needles on my upper body”
“husband has cirrhosis and is acting weird”
“Noah isogonic”
“someone cue the rocky theme meaning”
“i applied androgel to my scrotum”

I imagine my blog was not the first thing those people were looking for, but I hope at least they came away with something.

I have not been writing much simply because I have been up and about more. I don’t have so many endless hours on the couch anymore, and in less than a week I will be attempting a comeback at my job playing the oboe. I pledged I would never write out of a sense of duty and only when I felt compelled to share something very interesting. In the months to come, I would love to add more to this blog, but the schedule and the regularity are still question marks.

But believe me, I have plenty left to write!

On a side note regarding my health, one troubling thing that has arisen the past few days is the return of my cough after a four-month hiatus. It is not as debilitating as it has been the past three years, but nonetheless it is back. The culprit is clear – as I have weaned off pain medication, the cough has slipped back into my life. Earlier, it had disappeared just as I started taking heavier pain meds for my headaches following surgery. (Pain meds have the side effect of suppressing chronic coughs.) I had started treatment with an allergist a few months ago, and now I know I will need to continue the treatment of the allergy shots that were disrupted once the tumor was spotted. I hate my cough. It kills my spirit and I must get rid of it one way or another!

Stay tuned.