Setbacks

Firstly, I hope everyone is gearing up for a fantastic holiday! Nah, scratch that. I hope everyone is gearing up for a Merry Christmas! I am not sure when all the PC retards decided that only the word “holiday’ was acceptable but I am going back to saying Christmas. Don’t like it? TOUGH!

Anywho I hope everyone is in good spirits

I have been on a steady incline to feeling better, until…

About a week or two ago I was beginning to get ridiculous side effects from the remainder of the maintenance doses of Depocyt that I was receiving in my Ommaya port. I had a particularly bad day and did not think I was going to make it through two more doses of the stuff. That’s where my wife stepped in as she always does and called both my doc locally and the NIH. I was having dizzy spells and tunnel vision and lots and lots of neuropathy-related shaking. All of which were leading to falls, low blood pressure and lightheadedness. Fucked up. I got good at anticipating the episodes (as we’re calling them) to the point where I’d get a few days up to maybe a week (if I were lucky) where he actually feels pretty good and then he gets hit by another dose. His local doc prescribed more pills of a steroid (dexamethasone) that he has to take for the first 5 days once he gets a new dose. They usually do not like you taking this med for more than 5 days because it can have nasty side effects, one of which is a stroke (there are many more purely unpleasant side effects). So I’ll be taking that like this:

2 days @ 3 / day
3 days @ 2 / day
3 days @ 1 / day

I had a Depocyt dose on 12/01/09 (my last) and have been having a very VERY difficult time with it. It almost seems like each time I goes through this the symptoms get worse, kinda like they are compounding. We were pretty sure the symptoms were caused by Depocyt treatments and now we are positive (either that and/or neuropathy)

Well, I got a call around 11:45am today from the team up at the NIH. All of the bigwigs were conferenced in just as if I were at my very own doctor’s appointment. We all decided as a group to stop the maintenance chemo which makes last month’s dose my last dose. I will FINALLY get to recover for good!!! Obviously there is risk involved with me stopping it 7 weeks early, but since they are dealing with his brain they just can’t chance things anymore with the severity of his symptoms. Plus my CNS is negative, it won’t be getting any MORE negative; just maintaining 0.

So, long story short … I am still dealing with the symptoms of neuropathy (it’s like I have Parkinson’s now) and the dizziness. Some days it’s worse than others. Today is rough I have NO ENERGY.

To quote my wife’s blog on the same subject, “So I’m so happy to finally announce after a LONG 7 months of this nightmare that my wonderful husband, that has been SUCH a fabulous fighter, is finally done with chemo. May he never need any of that nasty stuff ever again!”

Depocyt == teh suck

Depocyt, Depocyt, Depocyt oh how I love to hate thee.

The doctors put me on it because the Methotrexate simply wasn’t strong enough to completely clear my CSF. Ok, fine. It’s extremely expensive, it’s wrapped in a fat-type cell so I only require a treatment once every two weeks (rather than twice weekly) and it stays in the CSF longer to do its thing better. The problem …

Besides it being a bastard to acquire and have placed it also requires an additional drug to be given (dexomethasone) to manage its side effects which include:

• headaches
• weakness
• nausea/vomiting
• fever (slight)
• neck pain
• back pain
• etc etc etc

I have all of these symptoms. Fortunately (or unfortunately depending on how you look at it). I have waited for 6 days for relief without getting any by itself. A quick google search reminded me of this other drug (dexomethasone) that I am supposed to take ALONG WITH the injection for 5 days or so. The name sounded familiar (dexomethasone) so we went looking for a medicine bottle with that name …and low and behold we found it. It also has 5 refills!

I can’t blame this one on public health (other than to say a reminder would have been nice). So I am off to CVS to get some relief hopefully. Hopefully it’s not too late.

Note: This one is actually funny to me. Big Oops on my part!