2017-04-08

Lyrics of "Tripping On.... Dex?"

There are songs about cocaine, songs about weed (remember Panama Red and Sweet Leaf?), songs about mushrooms, songs about Oxycontin (Oxycontin blues by Steve Earl), songs about uppers and downers (Gracie Slick), songs about all sorts of drugs.  But I have never heard one about Dexamethzone. I suppose it is not one of those things you go out on a dark night to a street corner and ask for.  It just has not been billed as sexy I guess.

But I tell you what: It is a trip.  No pretty colors, or melting ceilings...but a trip none the less.  And it lasts!  This is not your typical two hour high...this shit goes on and on and on....  Take it on Wednesday and you start to crash Friday night.  And the crash is just as weird as the plateau.  I won't go into the details, as I figure the reader really does not need or want to know.  Just accepts that this cortico-steroid is both nuanced and intense, sometimes both at once.

But the point is that there are lots of folks that use this concoction, usually along with other concoctions that no one would ever call natural, and would not volunteer to consume.  And those folks don't have a song to hum along to while ..er... enjoying ...   the scheduled event.

Aha!  Now that is a unique characteristic of Dex: It is scheduled! I will have to work that into the lyrics somehow.

A long time ago, I had this really cool job for a really cool company where we made the circuit boards for super computers. I worked second shift because I was going to school at the time.  I had this idea for a song entitled "The Second Shift Blues".  I even worked out some of the chords for the song. But the lyrics never quite came together.  (See, this is what Dex does: My thoughts are fragmented and I just butterfly from one thing to another.  I can't write but a few paragraphs and my mind wanders off to another, somehow related subject.  Welcome to Dex...)

...oh yeah... Dex.  So ones thoughts wander a bit, or a lot sometimes.  Makes the process of checkout at the grocery store interesting.  I stand there and watch items getting scanned and the next thing the cashier is looking at me asking if I am going to pay for this shit, but I am thinking about the protocol used between the bar code scanner and the cash register.  Then I look down and realize that I have my debit card in my hand and while I am waiting for the scanner to make sure I am ok, end up wondering how many scans one could get out of that tape on the back of the card before enough quantum particles mess up enough of the magnetically stored ones and zeros such that the stored data is corrupt.

Oh shit!  I was supposed to be bagging my own groceries.  Don't they have high school kid to do that anymore?  Now the person behind me is on the same page as the cashier.  I can see them in my peripheral vision(which seems to be enhanced when tripping on Dex) and the sideways looks and body language says "Early Alzheimer's maybe? I didn't smell booze so he isn't drunk...must be a wierdo....".

I bag my groceries and leave, having switched to perhaps three or four other subjects while bagging. Oh yeah... I parked in the North lot, a bit of a walk.  Wonder how many subjects will flutter through my mind between here and the truck.  Hmmm... carrying at least 18 pounds of bags, am only supposed to lift no more than five pounds according to the Dr.  But I left the damn cart at the check out counter. Oh well, I don't feel the extra pull on the atrophied muscles or pressure on the compression fractured vertebra....nope, Dex masks that.  Not much pain when one is on Dex. (hmm... there is another thing to add to the lyrics...)

I see an elderly woman carrying enough bags of groceries to feed a whole brood of grand kids.  She must be 80.  It does not even slow her down.  I can barley lift mine into the seat of the truck.  She is long gone by the time I get the key in the ignition.  Damn!  Dex does not give me artificial strength!

Hmmm... NPR has a thing on about the cost of drugs....my mind shifts to politics...

And on and on it goes.  Like right now.  I can feel my ability to write about this starting to be overtaken by the other thirty things I thought about while trying to focus on writing about writing lyrics about how Dex makes it hard to write about writing lyrics.  Yeah!  Oooohhh... listen to that circular statement!  It is almost spherical!  Wow!

I missed my Wednesday dose of Dex and ended up taking it Thursday morning. I might get five hours of sleep between then and Saturday night.  The crash will come tomorrow morning.

Welcome to Dex.  (Not as catchy as "Welcome to the Grand Illuion" is it? Oh well....


2017-02-20

Dumping Velcaid

So Velcaid is a bit much.  The resultant side effects of distal nueropothy are debilitating in my case. The bottom of my feet are numb making balance a real issue.  Weakness in my legs has made it difficult to do much walking around.  My stamina is minimized.

Additionally, the feeling of constant surging tingling throughout my torso is distracting to the point of driving me to constant irritability.  Every breath sends a wave of tingling though the skin from may navel all the way up to my sternum and spanning my entire frontal rib cage.

Having cut off the Velcaid for the last eight weeks made some improvement.  Adding Lyrica as a replacement for the previous nuero-inhibitor may have had some impact, but only in the trunk area, not in the legs.  My legs are showing some improvement I think.  I am hoping that the long term side effects will mostly disappear over the next few months.

So the regimen is now a weekly dose of Dexamethizone and a monthly IV of Darzalex.  It will be interesting to see whether or not the combination is enough to hold back the cancer and see if the kappa light chain count stays low.  The combination of Velcaid, Darzalex and Dexamethazone had reduced the kappa light chain count from ~63 down to 0.70.  A remarkable improvement.  However, the full protocol was cut short by six weeks due to the side effects.  Thus, it is hard to predict the longevity of the protocol.  Had the full protocol been followed, the expected increase in efficacy was 60%, giving me perhaps nine months of low kappa light chain counts.  I would suspect that the efficacy will be reduces somewhat due to the early cut-off of the protocol.  Time will tell.

I figure that if I can make it through the summer without major relapse, I will be doing damn well.  I hope to spend a fair amount of time down at the farm.  I always gain strength, both physically and mentally when I am there.  I miss Daveed of course, but my trips back give me some time with him and he is always happy to see me.

Again, this is here for my own reference, so will not push this out for the general public.