December 26, 2009

Participating in studies

There were many things I didn't mention in my last post that contributed to my busy year. One of those things is that I am participating in a few studies. One study has me on aztreonam lysine, which was denied FDA approval in the first round. As a study participant, I get the drug free, even without it being approved yet for general use. It is a great help! I very much like the months when I am on it. (Every other month is tobramycin.)

Another study - and another one of those things that contributed to my Year Of Suck - has to do with CF and GERD. In order to qualify for the study, you have to have GERD (gastro-esophegeal reflux disease). It does not have to be severe, just measurable. It's the measuring that was torture. Apparently I don't tolerate having ph probes snuck down my throat very well. That was a miserable 24 hours. The results were that I do indeed have GERD. So let's get started on the study, which is to see if proton pump inhibitors can be helpful in reducing exacerbations by reducing the amount of acid coming up and being inhaled into the lungs, especially during sleep. I am on some little blue pills. They're either Nexium or they're not. This being a double-blind study, neither I nor the researchers know - I am assigned a number and that number was assigned the drug (or the placebo) randomly. But I can tell you this: I've been doing this for six months now and I have only had a minor case of heartburn ONCE. My giant bottle of Tums is sitting in a cabinet unused. Nice to know what's going on and how to treat it, but...yeah, another fucking pill, another fucking thing to keep an eye on.

The third study I participate in is off and on. Rather, I provide samples of my phlegm for a researcher in Virginia. She's working on measuring viscosity and figuring out different ways to break it down. D-nase (Pulmozyme) is one drug which does this, though not like a magic wand. I think she's searching for the magic wand. So, anyway, periodically, she sends me a pouch of collection tubes, and I fill them up. It is rather gross, catching all ones phlegm and keeping it.

Click the grinch to see what I coughed up in just three days, including taking the collection tube with me on 2 runs. Warning: gross.

December 25, 2009

End of the year wrap-up

I can't believe it's been more than six weeks since my last post, but the fact is, I have very little to post about. I pretty much stopped running for all of November and the beginning of December. Oh, there was a Thanksgiving Day run, but that was about it. Without the pressure of being in training and with work becoming overwhelming in November, running was just plain not happening.

As much of a black mark as that is, there was a silver lining: my lung function at my last checkup was the best it's been in three years; FEV1 at least. I was very surprised!

And I needed that bit of good news because this year has not been a good one. There was very little to celebrate and a lot to be worried about. I will try to keep this recap short and will wrap up with the good things, so as not to end on a downer.

You may recall that I was sick in January and on IV antibiotics. That lasted three weeks. Then, just as I was beginning to feel good - and had gotten a call at Spaeth to start working on a possible Lord & Taylor set of windows - I got sick with the flu. The windows proposal was finished up by some colleagues and it didn't happen anyway: the entire creative team there was let go and a few months later I was introduced to the new people. (This because L&T was purchased by new investors.) Long-time people got let go and with them any hope of a new set of Christmas windows. They had last year's set refurbished for this year - and by April I knew that that chunk of income was not coming in this year.

But I'm getting ahead of myself. So I got the flu in February, which lasted about eight to ten days, then rolled itself over into outright pneumonia. So by March, I was once again on IVs and was very slowly recovering. Three weeks of IVs did what they could and I spent much of April and May trying to get back to my baseline, both in terms of lung function and physical fitness.

About this time, it became clear that of the three stores I do Christmas windows for (via Spaeth), I'd only be doing one set this year - and that based on a concept for the windows in a different city. There was less budget, too, which means that I would have no assistant; so now not only was I the associate designer on a set of windows that the chief designer (who made the concept renderings) wanted nothing to do with, but I was doing it without the support of the creative team the other designer gets... OK, I'm going to stop right there. I'm proud of how I handled that project, what I came up with, and the fact that, frankly, the bleed-over between the various cities' windows (all coming from the same concept) was a great learning experience - lots of creative growth there. So, if you live in Chicago, go see the Macy's windows while there's still time. You can look and say to your friends that someone you know was the scenic designer, even if the basic concept was not his. And ... they turned out OK. Better than last year's.

So. We're rolling into summer, which was fairly quiet. One of my recurring gigs actually increased my pay, which is great, but meant that I now had a clear priority there - and so cut short my motorcycle trip drastically. Only three days of riding instead of ten. I guess that means it was the budget vacation.

However, on that trip, I got to see some historical sites I've never been to and really enjoyed the few days I had. Made some new friends, renewed relationships with old, and generally had a blast. And Roxie didn't burp once the whole trip! Now ON that trip, as I've already posted, I found a pencil case that perfectly fit my newly acquired glucose meter and insulin pen.

Because, yes, that was part of my Year Of Suck, too. Becoming diabetic is far from the worst thing that can happen to someone with CF, but it wasn't good news, either. I can handle this; but it is more time each day devoted to health maintenance, more thought having to go into my meals, more things off-limits to me, at least not in the amounts I used to eat them. Basically, this year I had to say goodbye to Easter and Halloween. I feel I've been very strong regarding that, though I have gone back to pudding every night. I just have to take enough insulin to cover it. It's still probably not good for me...but if I can have just that, then I can resist all the other sweets.

My first trip with diabetes was to Charleston, where I ran the Cooper River Bridge Run. That was a pretty good run; would do it again. It is important to note that I was interviewed by the local ABC station at that time. (All my TV interviews have been posted on my website at As I rebuild the site, I'll make various links active; the Other link has to do with anything not related to my career, including the Health stuff.) That was neat.

So summer rolled on and I was doing pretty good. Still couldn't get my training where it needed to be and fell behind in the schedule. I was going to run the NY Marathon... but training went downhill and by September, I had to consider dropping out. I used the disastrous Queens Half (which I will never run again) to guage my fitness and decided in the middle of that race not to run the marathon.

Unfortunately, things were getting worse in the lung department and in October, for the third time this year, I went back on IVs. This time, they didn't have the punch I expected, even after a benchmark-setting 4 week course of treatment. But then, I started on them before I felt like complete crap, so maybe I was ahead of the game.

Things heated up at work. I missed spectating the marathon or volunteering for it because of a work commitment that Sunday. The top of November was particularly bad, as three friends died in the space of a week. Two, Tom Hubin and Deron Arnold, were CF patients whom I knew over the internet. We'd emailed often. Tom was over 60, so I remain impressed, but Deron deserved a better shake. He was waiting for the call and it just never came. Tacked on to that was the death of an acquaintance - a carpenter at Spaeth and an FIT student. Hit by a bus. What a stupid way to go. Sorry, kid.

I found myself in the middle of November feeling pretty good physically, and opening two shows on two consecutive nights. Well, one was a dance show, the other was the Macy's Herald Square Christmas windows, which I lit this year. That has been a hell of an experience! What I lost in physical fitness over October and November, I gained in strength in other areas.

Now it is deep into December and I am trying to get my fitness back on track. I've put in a whopping six miles this week - the most in two months. I'll keep working at it; try to build it all up again. The speed, the strength, the endurance. I should get back to climbing and lifting - God knows I haven't had time for either gym since early October.

I am about ready to file plans with the city for a renovation that will consume my life for most of next year. I'm already on thin ice financially, but after this renovation I'll be completely broke and in debt up to my ears. But this one is worth it: 1/3 of my house is uninhabitable right now and rehabbing it will result in me having a large, airy, sunny, clean apartment to rent out that should pay about 2/3 of the monthly nut. Part of it - the boiler replacement - may even qualify for a tax rebate from the city.

I can't promise that I'll be blogging much this next year. I am not racing until the next Staten Island Half and my running in the meantime is targeted at my health. I hope to keep the blog updated, sure, but daily runs will probably just get posted to, which then posts a link to my Facebook account. It is enough for me, as I can see routes and mileage that way.

Well, I need to go. Regular routine: therapy, eat, bed. Have to get up early tomorrow and go maintain the Macy's windows. I hope everyone had a nice Thanksgiving, is enjoying their long Christmas weekend, and will ring in a new year that is better in every way.