Ain’t no mayhaps about it, I’m going to die one day (and that’s okay)

I have an interesting relationship with death.  Being diagnosed with a terminal cancer at the age of 16 can do really weird things to a persons concepts of life and death.  The weird thing is, I do not consider myself afraid of death, at least not comparatively to the norm in my society.  I have always felt as though for me, there is a fear of the world turning unchanged after I am here to witness it, but to me that has always felt more like a fear or sadness at no longer being alive.  The idea of death had lost its grip on me a bit when I watched my cancer sisters fall like flys even amidst my remission and later recovery.  I realized somewhere along the way that I was going to live.  I was meant to live.  And live I have and think about death I haven’t, at least not so much.  

I make comments and jovial plans about my funeral, yes.  But I consider these a work in progress and are in no way “planned”.  

The other day, though I had this weird turn of moments where I freaked out in my head a little bit thinking about my death.  I was thinking about death, you see, but not the “no longer being here” sort of death as much as the MOMENT of death.  The immediate Death Moment.  And I became truly horrified.  

I was thinking things such as, “there will be a moment where SOMETHING is failing and I am helpless to stop it.  My heart will stop, or my breath will stop, or my brain will be severed off my spinal cord and all the other things will fail in succession.  I will suffocate, or black out, or my blood will run dry and it is going to be horrifying.  AND – I have to do it.  There is no turning back, with life.  ”The cost of living is dying and that’s one everybody owes” the old country song’s wisdom tells us.  

I am not afraid of what comes after that moment, to be honest I am excited for what comes AFTER that moment.  The big sleep – any of religions promised lands – becoming one with the Great White Light – any of those things really seem interesting enough.  And life – this before death thing is kind of backwards and hurty but I’m cool here.  That final moment of “a ha – here we go! HOLD ON” became overwhelmingly horrifying for some reason.  I kept thinking, “is it happening RIGHT NOW? IS IT!? What if it IS!?” and instantly I was all dizzy and sweaty and wanting to laugh at myself but also having a human moment.  I am going to die, for real, someday, I learned.  

The whole idea and fright attack got started because I was thinking of suicide.  It occurred to me, suicide is really the only option for avoiding the surprise of death.  Death happens, no matter what, and suicide is just a way to decide the when’s and where’s.  Its totally cheating, really.  I mean, I am not sure if the “Dealing with death” thing really is some fundamental part of humanity, something we need to deal with or if it is just simply a fact of life.  I mean, I know it is a fact of life, but is it also something more like a test or an important lesson that we need for some reason?  I mean – everyone who ever lived before me has died.  That is a powerful idea.  I mean, if all of them can handle it so can I right? I can just wait for it to come and somehow do right by it.  

I ain’t afraid of dying so much as having never lived.  And I have been actively doing that for years now.  :D So, I guess I’m gonna keep doing what I’ve been doing for as long as I may.

Are we the proudest monkeys???!

 

.. If you can find 3 minutes in your day to be totally grounded and reminded of WHAT THE HECK this is all about…

Read this:

This is a transcript of a live performance of one of my favorite songs ever.  It is Dave Matthews band and the song is amazing even without the live intro that he created on the spot –  I highly recommend you find a copy of the song to listen to at some point today – but most versions will not have this intro.  The song itself is enough – but the song combined with the intro is what kicks the hell out of me.  FYI.  

Read it… remember your roots and be uplifted because of the way life works.  This is just a reminder that the world we see is not as it is meant to be.  Things have fallen – and fallen far.  This is a way different world than we were meant to have, at least that is what I believe.  And Dave… well… he believes that too.  I mean it.

(this intro is being sang/talked through by dave with limited guitar strummings… before the song starts)

Sometimes when you watch CNN and you – you sit in front of CNN

And you watch all that stuff on CNN – the headline news maybe

Or you watch party of five.  Or you watch friends..??

Or you watch bombs blowing up in Baghdad

Or you watch people shooting each other 

Or people going hungry because other people eat too much and drink too much….

People standing on top of the white house 

Or people standing up on top of the hill

I don’t care if they’re Republicans or Democrats– I ain’t saying anything  

They stand up there and they sound like they know something!

Well they all still wake up in the morning – drink a cup of coffee 

and take a shit they ain’t better than I am….

They dance around the problems - the changes - 

They talk about the economic implications

But their grand father – great great grandfather was just like my great great grandfather –

Just a bunch of monkeys swinging up in  trees and shittin in the woods

If someone tells you that they know whats going on …Immediately – question them!! … yeah.

Especially the government.. 

I don’t care where the government is – could be in the Moscow.. could be in Washington DC – Don’t just… think we’ve got it made.

Just remember that we are all monkeys and that’s the first thing that’s gonna keep us together..

(now these are the actual song lyrics!!)

Swing in this tree

Oh I am bounce around so well

Branch to branch,

limb to limb you see

All in a day’s dream

I’m stuck

Like the other monkeys here

Me – I am a humble monkey

Sitting up in here again

But then came the day

I climbed out of these safe limbs

Ventured away

Walking tall, head high up and singing

I went to the city

Car horns, corners and the gritty

Now I am the proudest monkey you’ve ever seen

Monkey see, monkey do

Then comes the day

Staring at myself I turn to question me

I wonder do I want the simple, simple life that I once lived in well

Oh things were quiet then

In a way they were the better days

But now I am the proudest monkey you’ve ever seen

Monkey see, monkey do

Monkey see, monkey do

.. If you can find 3 minutes in your day to be totally grounded and reminded of WHAT THE HECK this is all about…

Read this:

This is a transcript of a live performance of one of my favorite songs ever.  It is Dave Matthews band and the song is amazing even without the live intro that he created on the spot –  I highly recommend you find a copy of the song to listen to at some point today – but most versions will not have this intro.  The song itself is enough – but the song combined with the intro is what kicks the hell out of me.  FYI.  

 

Read it… remember your roots and be uplifted because of the way life works.  This is just a reminder that the world we see is not as it is meant to be.  Things have fallen – and fallen far.  This is a way different world than we were meant to have, at least that is what I believe.  And Dave… well… he believes that too.  I mean it.

 

 

(this intro is being sang/talked through by dave with limited guitar strummings… before the song starts)

 

Sometimes when you watch CNN and you – you sit in front of CNN

And you watch all that stuff on CNN – the headline news maybe

Or you watch party of five.  Or you watch friends..??

 

Or you watch bombs blowing up in Baghdad

Or you watch people shooting each other 

Or people going hungry because other people eat too much and drink too much….

People standing on top of the white house 

Or people standing up on top of the hill

I don’t care if they’re Republicans or Democrats– I ain’t saying anything  

They stand up there and they sound like they know something!

Well they all still wake up in the morning – drink a cup of coffee 

and take a shit they ain’t better than I am….

They dance around the problems - the changes - 

They talk about the economic implications

But their grand father – great great grandfather was just like my great great grandfather –

Just a bunch of monkeys swinging up in  trees and shittin in the woods

If someone tells you that they know whats going on …Immediately – question them!! … yeah.

Especially the government.. 

I don’t care where the government is – could be in the Moscow.. could be in Washington DC – Don’t just… think we’ve got it made.

 

Just remember that we are all monkeys and that’s the first thing that’s gonna keep us together..

 

(now these are the actual song lyrics!!)

 

Swing in this tree

Oh I am bounce around so well

Branch to branch,

limb to limb you see

All in a day’s dream

I’m stuck

Like the other monkeys here

Me – I am a humble monkey

Sitting up in here again

 

But then came the day

I climbed out of these safe limbs

Ventured away

Walking tall, head high up and singing

I went to the city

Car horns, corners and the gritty

Now I am the proudest monkey you’ve ever seen

Monkey see, monkey do

 

Then comes the day

Staring at myself I turn to question me

I wonder do I want the simple, simple life that I once lived in well

Oh things were quiet then

In a way they were the better days

But now I am the proudest monkey you’ve ever seen

Monkey see, monkey do

Monkey see, monkey do

Jen gives us a status update

 

Jen gives us a status update

Originally uploaded by Jess, Beemouse Labs

Post 30th Birthday pancake breakfast. Just so so sleepy. <3

I have all of these things

I have the rose that you gave me.  I have the lilies in the fancy lime-green pot with the pie-crimped edges.  Somewhere, most likely, I have the cards.

I have the bra and underwear set that matches your bedroom and the belt that you commandeered for me while I giggled and played sneaky-look-out.  I have your favorite book. I have less than 7 pictures of either you or us together.  Perhaps even less than 5.

A number of the memories I have seem like dreams or movie clips, but the smells and sights are also so lifelike I can almost taste them when I try to remember.

I have the memory of you telling me you wanted to paint me, of you zipping up my camisole and of you snapping off my garter.  I remember how deeply I would inhale the scent of your sheets and pillows and how you would laugh and return to bed at least 3 or 4 times as you worked through your early morning wake up routines.  I remember the taste of the fajitas and UFC series Mickey’s on your lips as you trapped me backed up to the ledge of the counter in your kitchen.

I also remember how I would watch you as you posed.  I wondered often why someone as naturally cool as yourself worked so hard in certain, unnecessary ways.  I remember enjoying your opinions and quirky interest in fashion, but also wondering if you realized how hard it seemed you were trying.  I have the notion that there *was* something you were trying to prove, for whatever reason, as intently as you were trying to prove to me that you were smart that night on the couch across from Nathan and his throne – our hushed cuddly drunken confessions – where you felt so proud to know something I didn’t even though before that moment I never even knew it was something you thought about.

I remember wishing then that you weren’t so materialistic, and now through hindsight being so glad it didn’t matter that I kept skimming over your faults.  Time clears up short sighted  excitement, and for that, hallelujah!  We were no where near as compatible as we felt but we were on the right track, and I can see all of that now.

It hurts when people feel it necessary to lie, that, I won’t deny.  I feel like it was bullshit that you lied and backed out so uselessly.  In my brain alone, I can think of a million other ways we could have ended but you left the choice up to you, and so whatever.

Luckily, I’ve also got some new ideas on things that both work really well and things that just can’t work no matter what.  I’ve got some new examples of deal breakers, and I’ve got memories and examples of world shakers.

So cheers.

Random links for a Sunny, Cold Day.

A pig, a banana peel, and lies we were told by books of our youth:

http://www.flickr.com/photos/jhirsch/524333718/in/set-72157600290597718/

I passed a Masonic Lodge recently, and you know what that does to me.  My eyes searched wildly for clues and it came upon the faceplate of the building.  The year the building was created was listed first as 1957 and then secondly as 5957 AM.  I found that interesting.  Why add 4000 years exactly to a date…? Oh..! :

http://en.wikipedia.org/wiki/Anno_Mundi

Cold days or sad days always call for a lil LOLCAT.

http://www.youtube.com/watch?v=FhJOk97tmlc

Flies in the VACIME, we are.

{For Cassandra … because I forgot the lil notebook of Chemo last time.}

Our Chemo Cocktail was called the VACIME Protocol.  One of those clever acronyms that attempts to cute-ify and disguise the horrible drugs it consists of.  I know I should be grateful for the drugs – and more importantly respect that they have been discovered to help us and people like us, but its so hard when you read the list of side effects.  And remember what they made us feel like.

I figured that it is still nice to know the details of something so long ago but not forgotten – so I figured I would write a little chemo book report for you and me.  :D I’ve included a few memories and connections I have drawn on my own, but also included links to the Wikipedia posts for each drug so you can learn some more of the “hard facts”. Enjoy…! (Even in its morbidity!) 

V is for Vincristine – http://en.wikipedia.org/wiki/Vincristine

This buddy was only administered to us first thing on only the first day of each chemo round.  It wasn’t in one of those drippy drippy infusion bags that hung from our pump poles.  It was just a syringe they injected into our tubes as kind of the “kick off” to each round.  This is the drug that made a lot of the little kids walk on their tip toes, and it is the drug that caused me to loose the reflexes in my knees for years.  It is also probably responsible for some of the neurological things we have talked about.  I almost forgot the worst side effect this one gave me – this was the one that made my skin hurt.  It was weird – not like a muscle pain but literally my skin just felt zingy and sore.  It was a foreign pain – almost hard to describe because it wasn’t raw to the touch like a sun burn, it somehow just ached.  Like you worked your skin out too hard.  Not a muscle soreness at all but literally a skin soreness.  So Bizarre.  *shutters* 

A  is for Adriamycin (also called Doxorubicin) - http://en.wikipedia.org/wiki/Adriamycin  

This one was the doozy.  It was bright orange and just one of the most foul and awful inventions of men – cursed – except for the fact that it totally saved our lives.  This was the drug that was so harmful that they had calculated a LIFETIME allowance of it and it infused over the course of 8 -13 hours.  It was up there a looooong time.  I have to reiterate the fact that it was the wrongest color of orange.  A super pigmented orange soda. Neither one of us will probably ever be allowed to have this drug again. Horribly destructive on the hearts and kidneys.  CoQ-10 helped you protect your heart when you were going through chemo, I remember! 

C is for Cyclophosphamide - http://en.wikipedia.org/wiki/Cyclophosphamide

This one was clear – and just infused over the course of an hour each day of the chemo weeks.  Its list of side effects is bad and it was brutal reading that wikipedia description.  Its one of those cancer drugs that actually cause cancer – which seems ridiculous but the doctors just do what ever they can to save you.  It works especially well when it grouped together with Mesna and Ifosfamide.  The Mesna binds with the drugs after they do there dirty work and are waiting to be flushed from the body.  It acts as a barrier and protects our bladders and kidneys from the damage that these two drugs really want to do.  Interesting partnership.  Partnership of hair loss, infertility and internal bleeding!

I is for Ifosfamide - http://en.wikipedia.org/wiki/Ifosfamide. – the wiki is kinda lame on this one but I just lost 45 minutes of my life reading this: 

http://www.bccancer.bc.ca/NR/rdonlyres/99F10213-E336-4472-826A-164EEAA5B725/29256/ifosfamidemonograph_1Nov07.pdf

Very “medical” but you want to be a nurse..! And its INTERESTING.  Check it out if you dare…  It also clear- also an hour infusion each day of each round.  Apparently, because it is technically a nitrogen mustard it could be used nefariously as a chemical warfare agent.  Thats a trip..! 

M is for Mesna.  http://en.wikipedia.org/wiki/Mesna

Mesna is not even technically a chemotherapy drug at all.  It is actually like an assistant to the Cyclo and Ifos but they counted it officially in our protocol I remember.  We also got it each day of each treatment for an hour.  No real side effects except good ones!  It made us pee more but that helped our kidney and bladders not die.. so yay! 

And last but not least..

E is for Etoposide - http://en.wikipedia.org/wiki/Etoposide

This one was also infused an hour like the recent bunch.  I remember this one being annoying if it was administered overnight because it affects your blood pressure and so the nurses would be bugging us all the time with those stupid blood pressure machines. I think it was actually 3 or more times during and after the infusion.  We got our temp and bp checked throughout the day, but this one I remember because it was literally over and over for an hours.  Annoying.  All of the chemos were bad for our blood and marrow and caused us to suffer low counts but this one was like blood and marrow termites.  It just destroyed them all.  I remember knowing that if we were not taking this one.. the other ones wouldn’t be so harmful to our counts.  The A-Doxy was brutal too – but in a more general OMG THIS IS POISON way.  Etop was an awesome chemotherapy drug because it also just ate away at the tumors.  Especially the soft cell tumors like we had.  But it pretty much went after all fast splitting cells, like our digestive track (swish&swallow – ring a bell!?). Oh and the bone marrow.  And all the blood cells that lived there.   

I guess – thank GOD for GCSF.  Wait.. did I just say that? There is no way you don’t remember that brutal shot in the leg (or belly .. or ARM!??!) each night during and after chemo treatments until the counts were high enough to start the vicious cycle again..?  It was one of the squeamishly bothersome parts.  A subcutaneous shot over and over and over… A blessing though.  

GCSF – http://en.wikipedia.org/wiki/GCSF

You can read the technicals here – but the most interesting thing to me was how the GCSF stimulated the marrow to produce blood cells, but it would also force them out of home immaturely.  So we would “have cells” and our “counts” would be higher – but our Red, White and Platelets were all immature and weak.  GCSF had just been introduced into the cancer world pretty recently before you and I got sick and outside of God – it is probably the second thing most responsible for us being alive today.  Before GCSF – there is no way we would have received the insanely intense combination of the previously discussed drugs.  It just would not have been possible.  The whole idea of chemotherapy is to be so detrimental to the life of the cancer that you literally needed to almost kill the patient.  It was a tight rope walk trying to get as close as you can to killing the cancer without killing the patient.  

Anyways, I have a tendency to ramble and I’m gonna cut this off here.  We have forever to talk about this stuff.  Its awesome that we had such a similar experience but also experienced it from two vastly different times in our life.  Hope you enjoy the cheat sheet – now you will be able to remember all your chemo drugs too.  After all, what are big cancer-sisters for?

Platelets: A Supervillian Experience with the So-Tiny Blood Cell.

This is mostly for Jessie. 

Platelets are tiny but they are very important.  When I was sick and my platelets were suppressed after the Chemo treatments, I was not allowed to start my next round until there were a bunch of them back ready to fight. It was upsetting when chemo got delayed because it just pushed back my end date week by week by week. Anyways, when I was particularly frustrated at a low platelet delay I ate a bag of Peanut Butter M&M’s to make myself feel better in the grand tradition of Candy.  When I got my blood draw just a few days later, my platelets had greatly replenished and it was awesome..! I am SURE it was totally because of the Peanut Butter M&M’s. 

Dare you to use that in a term paper, Jess..!

Grown up..? I turn 30 in 6 months from Today.

I’m watching The Hours and its characters got me thinking critically about Aging.  Fundamentally, I believe each stage of our life is a new adventure, and I do not worry too much about getting older and attempt to live in the present. I realize quite suddenly that lately I have been talking about how old I’m getting or other related things a lot.  Mostly jokes or random conversations with people who overwhelmingly are surprised my age is as high of a number as it is, but it is still an issue coming out of my mouth often and if I am talking about it a lot – somewhere in the Jen I know I am dealing with the “30..??! REALLY? Already?!”.

I remember being a child and wanting to grow up so I could enjoy the freedoms that now make my life wonderful.  I feel like each year brings more clarity and sheds more light on who *I* am.  So tiny Jen must be thrilled with how much vitality and joie de vivre I experience because of my increased freedom and wisdom.  

As Jess reminds me every once and a while, there was a time where I swore up and down I would never live over the age of 26.  It was a weird thing I secretly calculated in my head after my cancer treatments ended.  I figured even with full remission of the cancer, I wouldn’t be considered ‘cured’ by the medical community for another 5 years and even though I believed I would make it that far – I figured I couldn’t expect much more than another 5 healthy years or so after that.  The mental calculations left me with the skewed perception that I was not dying yet, but I would probably not make it more than 10 more years.  It seems ridiculous now as my cancer has been gone nearly 13 years and I am healthy, healthy, healthy!  Cancer Jennie must be thrilled to be growing up because she had trouble envisioning herself to 30 in the first place.  

So what IS the big deal about 30 then..?  I do noticed the wrinkles, and in pictures and mirrors I can see the changes that have occurred in my face.  I notice that my social life has slowed down a bit I also see that as a extension of feeling more comfortable in the fact that I do not HAVE to be everywhere – see everything – right NOW. Lately, I also notice a bit of serenity that seems to propel the spring in my step and make my smile easy to draw out.  I feel a grace and a confidence that seems fresher than the one I had in my 20’s.  

I’m pretty sure I can just keep getting a tiny bit older everyday.  For as long as I’m allowed to at least.

Hello world!

I’ve been looking for a new blog.  I need to a place for old writings to be archived and a place for new ideas to be hashed out.  Perhaps it can be like a potluck.

I present to you some Miniature Wonderments!  

A ridiculous story, told via chat between friends.

Wednesday, November 19, 2008 

A ridiculous story via gchat: Jen: FUNNY STORY I fell asleep on the couch the other night with my glasses on and i woke up and tried to take them off but the hinges were stuck in my hair.. and I WAS VERY OW OW OW but also sleeping and then I  wrestled with them and tried to wind the hair around and around to untangle it but it just got worse     Jess:  oh No! you should’ve been like, GUS< HELP! Jen: you know how you will be both winding and unwinding and so then I finally tore it out with limited hair loss but in the process I lost both of the fucking lenses in the couch so i threw the frames down with a huff and went to bed Jess: omg!!!!!!!!!   hahahahahahhahaha Jen: In the morning I put the frames on and was like WTF? i could not see!  They no workie!  and I had to blindly hunt through the couch looking for the lenses and pop them back in Jess: HAHAHAHAHAHAHAHAH god that is hilarious god that’s horrible Jen: it was one of those WHY AM I NOT BEING RECORDED CONSTANTLY moments Jess: hahahah Jen: I would be a fun, fun tv show dude the insanity! i am so lucky i can laugh at myself