And Lithium Too!

Why not? Stabilize me, someone!

Ongoing Updates

I am trying to keep up with the latest bits of news. At the very least I might have everything in some order!

Last Friday Mr. Husband and I set out for Hospital J first thing in the morning. I felt like poop, and had managed to be so under the weather that I missed my weekly check-in, and totally forgot to check for my mucous and urinary values at my doctor. As a result, it was more than four hours later when I finally ran my chemo bags. While I got to lie down and doze, poor Mr. Husband had to hunch up next to my bed while his flu symptoms began. We finally got some food after we'd had many hours (six? seven?) of starvation. If nothing else, we were saved by Friendly's. But it was a harsh trip.

I spent the last few days starting to get better, and Mr. Husband is recovering. I have been reading, rather than just staring into space, and the spouse is actually upright and active. On the down side, I am feeling a number of worsening symptoms, including chattering teeth and shaking, extreme alertness, thick mucus, buzziness, and sudden fits of anger and fear. While I am improved in balance, I still cannot negotiate certain aspects of spatiality. I have forgotten, for example, how to stand on one foot at a time, and find myself stuck on the stairs.

All of this, I think, is going to add another medication. I hate the idea of adding still more drugs to my list, but I cannot imagine being somewhat functional without them. Klonopin is sold as Clonazepam and I have hopes.

So be it.

Packing

I have been thinking about one strangely bizarre job I had when I was just eighteen. For some reason I demanded that I wanted a "real" job. I had worked at a number of baby-sitting and office jobs, and insisted that I could use my typing skills. So I interviewed for, and received, a temporary office job for the summer. I think I called it secretarial skills and was paid a whole $5 an hour.

In retrospect, I cannot imagine why in the world I wanted this position, but I did. I felt very important as I showed up every morning at the office. There was a huge building on the first floor full of packing materials; I had nothing to do with that. The second floor, however, contained the salespeople, all of whom put in charges for their costs. My office had a 20-line switchboard. With the exception of the boss (whose name I think was Rocco) all the calls came into the switchboard. Which I ran.

The way it worked out, I learned from the salespeople, was that certain types of packing were relevant. For example, if you had prepared flats of meat - something "kinda bloody" - you would want to leave extra space for ground chuck, but if the meat was steak, it was less likely to require extra space. And in some cases, well, you'd want to be aware of more juice in the mix. It just made sense that way. Logically.

Of course, all we had on site were the styrofoam trays. The actual meat never came down to where it was packed, but that's how they talked about it. They didn't see it in their mind's eye.

I never had that kind of work after that summer; I was in a number of shows and an equally large number of random job-ins, and stayed connected to the theater. At the end of the summer I took my pay stub and never went back. But I never forgot about the imaginary meat, either.

Oh My

Oh my oh my. And so forth. Work is over. Over, and over, and done, and there it is and the twin engines of relief and responsibility are throbbing, and here comes the parachute finally finally and I will coast into the quiet.
Yeah.

Excellent Birds

These past few days have held interesting tensions. On one hand, I've experienced tremendous relief from the symptoms incurred by the jarring of my immune system. It is a joy to be free from the worst of it, and the strange birds (credit to Peter Gabriel and Laurie Anderson) give me all kinds of release. On the other hand, I cannot stop chewing on the insides of my cheeks, and grinding my teeth, and I am WIDE AWAKE, and my noggin is swollen. The cold that developed rapidly last week added a confusing layer of cumulus to my head as well.

Until it all burned off. Get yourself to StepAfrika. Seriously. I don't even mind being in the wheelchair.

Less And Less

As I rapidly ramp up - or should I say down? - to leave my job, I am acutely aware of my pride in my staff, the changes they need and are struggling to enact. This year has seen an utter reversal. It ain't easy. But the people who have signed on, even when it was hard, have renewed their commitments to the work we do. My gratitude is unstinting.

At the same time, I am withdrawing from the work. I am out of the loop; I know less and less. And in a weird way, that is a source of pride. It is unnerving, but it is no longer what I need to be good at. I see myself learning about how I can get better, reaching toward my muscles, finding ways to exercise my stiff body, moving. Where will I locate myself? How will I process the treatments? What will come to me? What will happen to this life?

Sometime next week this will be the end of an era for me. It is time.

Back Into The Cosmos

After wheelchairs, staggers, and a voyage to a terrifying new world, I have flown back into the cosmos. I am now taking steroids. The symptoms Mr. Husband described in Update on Torch are slowly receding.

It is physically safer here, but not uncomplicated. I once wrote about

confusion and general inside-outness. The medications alone have given me reason to feel loosely confoosely on my tippy tippy toesies, and the neural inconsistencies are quite an experience...

and I retain, all these years later, an acute memory of a psychotic event brought on by steroids. However, with a little bit of luck I'll have a purchase on the world within the next six months.

The reason I am so optimistic is the appearance in my life, starting today, of a new drug called Avastin. It will likely, they tell me, free me from dependence on steroids by shrinking the edema. It will fight the growth of tumors in my brain. Its side effects are few and have none of the horrors of steroidal side effects.

When we met with Dr. Smile and his nurse on the way to the Cape, they told us that this drug had been approved within the last two months by the insurance company. I've scrambled back from the brink again, thanks to "all manner of unforeseen incidents and meetings and material assistance, which no one could have dreamed would have come his way" (Goethe Faust, 1835 John Anster translation). Oh glory be!

I will receive Avastin intravenously at Hospital J every two weeks until we find out more. They tell me that it has a 60% success rate. This is nothing to sneeze at. I am not sneezing.