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Tuesday, June 4, 2013

A River Runs Through Me

It has been a while since my last update. I miss writing. All my attention has been on finishing my latest (and largest) musical composition. I haven't had time to write about small issues as they come and go. It also has been a sad time in general recently, losing friends, or friends losing family members, or people in my support group online who lose their battles with all the complications I so far have been able to dodge. There is a lot of sadness to go around recently and I’m feeling it.

I have a bit of news. My blood tests were mixed. Most were fine (free T4, CBC, etc.), but my testosterone is once again so low that another med change is in order. A pattern is emerging: I test low, then they bump up my dosage. Then I test fine. Six months after that I am low again and they bump up my dosage some more. Then I test fine again. Then I don’t. It's like chasing Alice's rabbit through the woods. I am now taking 2.5 times more than I did in 2009, yet my tests are lower. I don’t know how that is possible. It should be like physics: put something in your body and it should stay in there. I do everything as prescribed in order to reduce the variables, but my tests still graph out like a zig-zag.

But I am hardly a unique case. Replacing testosterone is not easy. And unlike the dudes in the “low T” commercials, I am instead “no T,” meaning I naturally produce zero of this essential hormone. I’m not trying out for the olympics here; I just want enough energy to reach for a book. So it is frustrating, but better than nothing. The few weeks I endured after the second brain surgery with zero T are a constant reminder of what my life would be reduced to without modern endocrinology. I am grateful they are trying.

The other thing I wanted to touch on with this entry relates to the most prominent of my side-conditions: Diabetes Insipidus. This is not the same as "diabetes" and it has nothing to do with blood sugar. It is a rare condition and for some reason people with craniopharyngiomas tend to have it. Diabetes Insipidus (DI) is uncontrollable fluid loss (i.e. bladder filling up with diluted urine) followed by uncontrollable thirst. When untreated, mine is debilitating. In the hospital I drank 24 liters per day just trying to stay hydrated. My mouth was like sandpaper. After a while water made me sick, so I drank lemonade, then apple juice, then a berry juice. I alternated between them, trying to stay ahead of my thirst without being repulsed by the fluids, and all the while nurses continually emptied the bucket at the other end of my catheter.

The hormone I am missing is called Vasopressin. When I take a hit on my nasal spray (Desmopressin Acetate) the problem goes away. But it's important to wait once a day for the "breakthrough" when I feel my body shift back into DI mode. I run to the restroom. I drink big glasses of ice water. And I hate salt. I don't want to be in the same room as a salt shaker. Just water, water, ice, ice. And bathroom stops every ten minutes, then every five minutes. This body flush is important because it is my biggest chance to flush out toxins and feel the swelling in my legs go down. After the breakthrough peaks I take a hit on the spray and in five minutes everything dries up.

Don't lose the little nasal spray bottle, folks. It is the difference between being normal and parking yourself between a water source and a toilet for the rest of your life. 24 liters per day. Always have the nasal spray with you, right?

You can't. It needs to be refrigerated.

So the big rule is don't forget to ask yourself if you need the spray before leaving the house. Don't get caught in a breakthrough away from home. As a symphony musician who plays about 130 concerts per year, I am always asking myself about the spray. Breakthroughs do not happen at the same time every day. The nasal spray is good for 18-20 hours, so I experience breakthroughs anytime. If it's the middle of the night I have to be awake for a few hours while I feel it run its course. That's just the way it is.

A few weeks ago I rushed to get ready for a concert. I had hit breakthrough but the spray was in the fridge downstairs. I finished washing my face, then put on my tuxedo. I checked my watch and rushed downstairs. I grabbed my coat and my oboe bag and got into the car. Halfway to the concert I realized my error: the spray was in the fridge. I needed a bathroom. And I was thirsty. And the concert had no intermission. Just 90 minutes thru Beethoven’s Missa Solemnis. I needed a bathroom every ten minutes. I was forked. (I think my autocorrect kicked in there.)

At 7:30 p.m. I considered my options. All symphony musicians know you can never just “bail on a gig,” especially not this late. Every part is too important. I would need to be on the stage from 8 p.m. to 9:30 p.m., fully able to play. I had a carton of coconut water in my oboe bag, high in potassium, plus as much water as I needed to drink from the cooler backstage. I checked the clock one more time and drank the whole container of coconut water. Regular water hydrates (and then it is out of you) but coconut water has nutrients.

At 7:45 p.m. I went into the men’s room and lost all the fluid from the coconut water. Then I was thirsty, so I drank a big cup of water. At 7:55 p.m. I went back into the men’s room and lost all of that. I was thirsty again but went straight out on stage. One thing I have learned from Diabetes Insipidus is it is easier to be thirsty than to need a restroom.

By the end of the Missa Solemnis I was very, very thirsty and the inside of my mouth was caked. During the 90 minutes I took sips from a water bottle only to keep my reed wet. If I caved into my thirst and took a large gulp I knew that would be in my bladder in five minutes, so I resisted the urge.

After the concert I got in the car, thirsty as ever. Ten minutes to get home. I waited exactly five minutes before downing the most refreshing bottle of water ever. As soon as we walked in the door I went to the restroom and got rid of the bottle of water. Then I opened the fridge and took a hit on the nasal spray, returning the essential hormone into my body. Five minutes after that I felt normal, a new man, a feeling that would comfort me for the next 18-20 hours.


  1. so happy to have found your blog. am following! i know what you are going through with the diabetes insipidus. i had surgery for a craniopharyngioma in feb 2003. and had the DI. it was a nightmare. i was on 2 "snorts" a day and was ok. but! then i got down to one snort, then none! i no longer have DI! How great is that? i think it took 3 or 4 years- maybe even 5? for it to go away. but man, am i grateful! i never waited for my thirst to come, i just snorted in the mornings, and at bed time. it is so nice being able to talk to someone who gets it. i have been through so much- with my family, you can;t imagine. i know there are sites out there for support, but i don't want to hear anything negative. not keeping my head in the sand, but so far, i am good. my last mri in dec showed shrinkage- even still. so, i want to stay ignorant and happy.

  2. Another great post, Ale! Re: Testosterone... will they try another method of delivery, or is the gel the only/most effective (though not very effective) way? Are you taking synthroid? I've "known" you this long yet I don't remember if you're on it or not.


  3. Came across your Blog by pure accident... have a friend who has been diagnosed with stage 3 craniopharyngioma which is inoperable he is 41 :( what a nightmare getting informed about options... can you suggest anything please...we live in NZ. Thanks

  4. because a craniopharyngioma is so rare, not a lot of docs have experience with them. i ended up in philadelphia,pa., with the absolute best neurosurgeon ever. look him up- dr. david andrews. i love him. tell your friend not to just settle for who is near him- get him to travel if he feels he needs more options.