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....


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.  


It's Living, Not Dying

I have been relatively quiet for the last few weeks as far as my on line presence.  Not silent mind you, but comparatively quiet.  The reason for this is I have felt like a sun-baked pile of shit.  The new chemo protocol that I have been on for the last couple of months has some side effects that are rather debilitating.  Mostly what is called distal neuropothy.

Do a Google search if you want to know more, but the bottom line is that one loses tactile sensation in the hands and feet and it feels like there are ants crawling just under the skin whose feet are needles.  And that goes on 24/7.  In my case, my legs have become rather weak which makes balance a bit of a chore.  I have to think before I move.  Hell, I often don't think before I speak, so thinking before I move is a real challenge.  (That is a joke, in case you did not catch on .. )

Thus, answering the phone, responding to emails or text messages has taken a back seat to my being a frigging wimp about this stuff.  Oh well, I can handle what I can handle, and I will not apologize for being a wimp...

Other than to inform those who hear from me more frequently than they have recently of my excuse, this post is also to re-affirm a couple of things, as follows:

Cancer is a bitch, there is no question.  Getting cancer is a serious attitude adjustment.  I suspect having cancer cured must be pretty cool too.  I don't know, that is not likely in some cases like mine.  Regardless, cancer is a part of life.  That means a part of living....not just a part of dying.  When I am beat up, miserable and hurting like a son-of-a-bitch, it feels like I am dying, but I am not.  I am living.  And of those times in between, when the side-effects are diminished and I can function reasonable well, I am certainly living.  I have fun.  I do shit I should not do according to my Dr. and all those well wishing folk who offer up advice.  That is living for me.  Pushing the boundaries a bit is what makes living fun and worthwhile to me.  So that is what I do.

We have been taught to respond to the news that someone has cancer a certain way.  I don't think what we have been taught is very helpful.  People who have cancer are not dying, they are living.  Not all of them sit around thinking about dying all the time.  Yeah, it does rest heavy in the back of the mind.  There is this little black marble back there that sends out a reminder now and again...it says:  "You ain't gonna beat this you know....one of these days your going to finish up, and it won't be nearly as long from now as you keep telling yourself".

And that little voice is right.  That is pragmatic realism reaching out.  But pragmatic realism is only good if it does one some good.  So one has to respond to that little black marble appropriately at the appropriate time.  Sometimes the appropriate response is a resounding 'fuck you'.  Sometimes it is a sort of weary 'yeah...yeah....yeah... whatever, I am busy right now'.  Other times one is best to listen and figure out a way to be at peace with that knowledge.

Sometimes, the best response is to sit down and just talk it out.  Sort of like what I am doing here.  It is easier here in the written form in some ways.  I don't have to take up someones time by having them sit and listen to me seemingly bitch about my condition.  They can choose to take the time to read this or not.  They don't have to sit and wonder what it is that I need or want to hear, or what might be appropriate for them to say.  I hate putting folks in that situation.  Yet I can't just turn it off either.  I actually need to talk it out in order to understand where I am, what I have become.

I have tried not to talk about it, really, I have.  Who wants to hear this shit anyway.  It is a downer.  But it is a part of my life now, a big part.  In time, in effort, in impact on my family and friends.  I try to focus on my little projects at the farm, or ranting about politics on FB, or listening to the stories others tell.  Yet I find myself falling back into the same old trap of telling about the treatment, or the disease itself or something related.

So now and again, I just give up and let it flow.  Talk about it.  One has to I think, at least someone like me does.  I have found that I background conceptualize a lot of things, and that those things don't become real until I verbalize (or write) them.  So that is my excuse.  That is why I write shit like this.

We really do need to find a different way to think about cancer though.  A way to laugh about it, and to remove the stigma of death from it.  There is a big gulf between living with cancer and dying of it.  Just like there is a big gulf between driving a car and getting into a fatal car crash. To drive is not to crash and die.  And even if it ends that way, there was all that driving before the crash.  All those miles of sights to see, hearing the sing of the tires, the engine grinding out power at our demand.  That is living.  The crash does not matter.  Living with cancer is just driving the car knowing that the crash is coming.  Death has a name for those of us with diseases like this.  That is the only difference really.  For most folks, death does not have a name or it is assumed to be called 'old age'.  Of course, as much as I drive, maybe the name will surprise me one of these days... lol.

I guess that is enough.  I am talked out.  I have written things that I probably have written before.  I have written things I have said before, probably numerous times.  I just needed to talk it out again...

Now. I suppose I should quit yammering on and go do what I am talking about... I have stuff to do.  I guess that means I am living... :-)