Thursday, December 18, 2008

Another Treatment Moment

Budget cutbacks are on the rise here at NIH. It started first in subtle ways--for example, reduction of plastic cups in which medications were dispersed in favor of cheaper, smaller paper cups. The shuttle routes which transport people back and forth from campus to other points in the immediate vicinity are also being eliminated or greatly reduced. These are the first two examples I can think of when one contemplates the impact of a bad economy on a government agency. Subsequent things to go, I predict, will be the free movies we're shuttled to on Wednesday evenings and a reduction in additions to the patient library. I'm sure there are other changes which have gone into effect as well that aren't as visible. My fear, of course, is that they'll have to cut back on research studies which selfishly I would like to see preserved because I do hope that they might just find a cure for what I have within my lifetime.

Since I've been here, I've filled out study after study with a sharpened number two pencil, contributed blood to a genetic profile, undergone hours in a MRI tunnel, dealt with the indignity of having parts of my chest hair shaved to accommodate the electrodes of an EKG machine, and asked to rate the severity of every imaginable facet of my illness. The begin date of the protocol looms ever closer. Shortly after the first of the year, I'll undergo a fresh round of neuropsych testing for two busy days, and then begin the infusions. My days will be packed full of things to do almost from the moment I'm awakened from sleep at seven o'clock in the morning. This was the ultimate goal of why I'm up here, though it has been nice to really get to know the DC area.

Yesterday I was asked to explore the minutia of my most severe suicide attempt in great detail. It didn't bum me out (as the doctors and nurses had feared) so much as it reminded me of a part of my life of which I am exceptionally bored. When I first got ill, I was obsessed to navel-gazing excess with my diagnosis and compelled to relate every imaginable element of what I had into all elements of my daily life. This is a commonplace occurrence but it's also a stage in my development that has nothing really to offer me if I choose to look backwards. I romanticized my misery at that point in my life, which deeply exasperated many who loved me. I had a long way to go in those times towards health and as a result was quite clingy and needy. The passage of time has healed many wounds though I still bare some major scars from the past.

Provided I feel up to it, I'll be blogging about the daily routine of the protocol when it arrives. Many readers have expressed interest in how it works. As of now, I'm going into it the way I have from the moment I arrived here---seeing this all as some grand, glorious adventure. And on that note, I take my leave of you all.


Gail said...

Hi Kevin-

An adventure, indeed! I feel privileged to be part of it, albeit in blog land.

Navel gazing huh? Makes sense to me.! :-)


Utah Savage said...

I'm sixty four and I'm still navel gazing during the downward swinging spots. Not so much when I'm doing well. Well not unless you count writing about every detail of your life and making it public.

All your observations are interesting to me. And maybe you can add new info into the genetic component. These are two things I've learn on my weird journey is that for most genetic diseases there is one genetic marker. For bipolar disorder there are two. Double whammy. I've also had it made very clear to me that this isn't something for which there is a cure or much hope for one. It can be managed. That's the good news.

But maybe you'll find out that my experience and/or the information I've gathered is inaccurate. That would be good. I think at this point finding better drugs, with fewer bad side effects would be very helpful. So here's hoping.