Tag Archives: thoughts

A Wrinkle In Time… saves 9?

In some ways I classify Madeline L’Engle with the like of Umberto Eco in that the way they put ideas on paper not only fascinates me but inspires me to try my hand at the same.

However, I find myself in the precarious situation of having this inspiration under the effects of chemo. Chemo brain is so real, and not at all what I thought it would be.

Brain anatomy medical head skull digital 3 d x ray xray psychedelic 3720x2631

It is so weird, living in my new brain space, that I am still marveling at just who strange it is.  It feels normal, but at the same time I recognize that it just isn’t. I wish I could explain it, but it has pieces of black hole in a mid-century modern living space full of dark wood antiques. Things feel like they used to flow seamlessly together in the ol’ noggin, and now some are living in a continual state of being startled in headlights on a dark road.  The crazy thing is that it still fucking works, most people who meet me might not know how much more separate I feel from my brain space as I am able to make coherent and thought out conversation… I recently had a conversation with a friend and their inner ‘effin asshole badger striked and this kind of accusatory finger-pointing conversation was completely frightening and new to me, and I am still trying to figure out what was different in the experience (other than they were so wrong in arguing Mexico has no real middle class and felt cornered by my opposition to their argument plus they had been drinking and that apparently makes them asshats, but really?).

::deep breath::

The point is, I suppose, that the difference fully lies within me. My brain feels different.

I still look at the rough draft chapters of my “book”, hanging in the ethers and sitting and waiting for me to curl up with them like I would with my son after a spell of time apart.  They weep.

This cancer business is the shit, but not in the good way one would say “the shit”.

So, the newest version of the movie A Wrinkle In Time is coming out in theaters this weekend. I am excited, but also scared. It is one of those reads that stuck with me. I am scared because the last version was just plain awful, and there are ideas in it that can be taken apart by people on both side of life (conservative v liberal; religious v atheist) and I hope that it tries to stay planted where it belongs ebbing and swaying through all those because (for me at least) this story inspired reflection, and I think those themes are at their most amazing when they are reflected on.  Which brings me to the quote that inspired me to come back here with something more tangible than a reading list:

“She preferred scientific metaphors, and scientists to theologians, because she understood that science is more open to revelation than religion,” Voiklis said. “Religion divides us into teams.

Oh my goodness, there is so much truth in this… but some scientists are as bad as staunch theologians and revelation is not as amazing to them.  I recall once, thinking about something the priest had said at mass and I had asked my husband to ask him a question I had and the priest yelled at my husband and then I realized that the expectation was not to wonder but to accept and that coupled with a whole bunch of bullshit about rebirth (which is so closely intertwined with horrid awful experiences with preachy “born again” people,  and that may be why I lost faith, not in faith (though for a while it felt that way) but in people of faith – because they can be real a$$holes. Lately, thank God, I have come across gentle people of faith, where questions are OK and who realize that “No, the devil did not put fossils on our earth as a means to temptation” and my own faith has felt some softening. Which is a good place to be, because my brain (and here is where I bring it all back together, right?) feels like pondering things of faith is a mental exercise worth tackling and which, ultimately, might be what helps me feel more normal in my brain space.

 

Advertisements

i am either a storm or a drought

i am either
a storm
or
a drought.

in-betweens
have never
been my thing.
~ Sanober Khan

The Judgment of Paris; Paris seated on a rock choosing between the goddesses Venus, Juno, and Minerva, the god Mercury with a caduceus in between them by Giorgio Ghisi

Men choosing women, that be some crazy shit there.  Paris, the god credited with starting the Trojan war because he was a wimp and choose the one that offered him the most beautiful woman instead of those who offered dominion over Europe and Asia OR battle skills and wisdom – even those male gods often thought with their dicks. I mean he had to pick between (per the picture):

  1. the Roman goddess of wisdom and strategic warfare, and the sponsor of arts, trade, and strategy.
  2. the Roman goddess who was the protector and special counselor of the state.
  3. the Roman goddess whose functions encompassed love, beauty, desire, sex, fertility, prosperity and victory.

Which is pretty much what every woman is capable of doing individually in a mythological triumvirate.

But me… I am here, at the grand milestone of being half way through chemotherapy.  In this special place of being half way done, I am fully done with the first medicinal cocktail known among us cancer hipsters as AC. AC is a shitstorm, one of those  (the A) has the nickname of the red devil or the red death and yes, that medication is fucking super strength Kool-aid red. It gets hand injected into you, and is the reason why I succumbed to the port being placed since its superpowers include being able to completely destroy any muscle it comes into contact with, so one little leak and plastic surgery would have been required. It causes all sorts of problems in spite of that.

I stand with that behind me, and the last single spirit, known as T, ahead. T being something that most tolerate a bit better, and I pray, wish , hope, make offerings that I am one of those.

I have lost most of my hair, but not all – and alopecia is a nasty thing but having some hair and some baldness is quite another.  I do, with some degree of pride, have an excellently shaped head. For the record, all ones hairy areas tend to lose hair, which is rather interesting to witness.

My superficial body fluids have turned into wax. My eyes water thick goo, my saliva is like syrup, and my sweat is like a coating of candlewax.

I have developed mouth sores, but was able to contain those nasty fuckers whose inauspicious start is as blisters around my mouth which turn into miniature wounds, sensitive to everything.

My nails, fingers and toes, are in a state – they feel as if they are slowly dying and agonizing death.

Cancer is a financial blow, so much so that my family started a gofundme for me. This is something my husband and I are trying to manage, it is so humbling in ways that I am not fully prepared to manage, and most especially not when they decided to start it (which was in the worst days of a chemo cycle), trying to manage handing them the information they needed as I as navigating the dreadful way one feelings as the poison that is chemotherapy starts taking its hold on your whole fucking body; inside, outside, and soulside…. and my immediate family were out camping. I still struggle with this, they love me, they mean to help and so, I have decided to find the grace in this experience.  Grace is something that has long eluded me. And if the lesson I am supposed to learn from this stupid fucking cancer is to find grace, then I ….

I can’t finish that sentence, it falls in the depths of despair that chronic illness can put one into if not careful to manage the  attitude.

I will leave it to, finding grace.

In other news of this cancerous nature, I am compiling a list (and I hate lists) of:

Bucket list for when my cancer shit storm is over

it includes turning my scars into tattoos, going dancing, going camping, going to Chimayo, returning to Hopi… I am totally taking suggestions!

 (and now some music to accompany my state of mind):

Intellectual fugitives – update

He was interested in research (or at least feigned interest), but Li was considered an intellectual fugitive, unable to commit to any one question or plan.
~ Siddhartha Mukherjee, “The Emperor of All Maladies: A Biography of Cancer”

I am listening to Dr. Mukherjee’s book right now and this phrase caught me. I love the idea of being an intellectual fugitive.

For the record, Li was the physician responsible for the first successful use of chemotherapy, he was fired by the NCI because they though his idea too aggressive. 

One of the things that I love about anthropology is that it, out of the plethora of other intellectual disciplines, allows for more of this than any other.

Someone I knew called me a dabbler once, I think they meant it in something akin to this idea – but dabbler doesn’t sound as nice.

I think we need to have intellectually curious people, a cohort of intellectual fugitives, people who can see relationships beyond the one question or plan. It is arguably a part of that road map to discovery, and a necessary aspect of the path.

But that is merely a musing and not what and why I am here today.

you crazy nipple haters
that orange circle is a modesty patch for all the nipple haters I know.
This cancer shit is tough no matter what – there is so much fear that needs to be managed. It is actually surprising, a test of human resilience perhaps – makes me think I am a devout coward, because I frankly hate having to do this shit.  I find that even keeping busy is not enough to bring peace of mind for a stretch of time longer than maybe 15 minutes.

Where am I right now…

  • I am very close to three years of remission from my first cancer.
  • I am newly into the diagnosis of stage 2B breast cancer, the edge of what is considered early detection.  Yay right, but my heart gets heavy when I think about how my lead in to surgery was so close to being sure that it was stage 1A – and that  following it jumped to 2B and that this is huge and makes my heart feel heavy and squeezed.

My cancers are distinct and unrelated. I write this for those of you that might be thinking this, it is not metastasis. A blessing – and how weird is it to call having two cancers a blessing.

I do know that I must have both chemo (regimen is still to be determined)and radiation (six weeks), with hormonal therapy for 5 to 10 years.

I just don’t really and fully know what that will look like yet.

 

 

 

tickling the tail of a sleeping dragon

“tickling the tail of a sleeping dragon”.
~ Richard Feynman (the story behind this quote)

There is an infinitesimal moment in certain kinds of situations that have about them a sense of the surreal, of suspended animation, of some sort of unexplainable something that detaches you from your surroundings and yet manages to implode you into them. Everything makes sense, yet nothing does.

Getting told gut wrenching news can be one of them.

I had wanted to come here and put into written posterity my fight with Hello Kitty that lead to a paisley shaped second degree burn. A story such as this had elements of the absurd coupled with a funny anecdote about managing pain, discomfort, and numbness after surgery.

I’ve been pondering, as well, putting down the why… as in why I share this “journey” in the way I do. (side note: I hate the word journey in this case… Journey is a beautiful word, cancer should never be a part of its etymology)

But really, all I “feel” like I want to do right now is to throw things and break them while cussing like an angry drunken sailor… at least until I see that in the whole scheme of things I’m pretty lucky and behaving like that impulse, is pretty self-indulgent and whiney so I don’t and just end up having to tell my husband that I’m talking to myself again.

I do talk to myself quite a lot now, primarily because I start thinking of people who have expressed some dislike towards me and it’s me asking them if they’re happy now that I’ve got cancer… again.  It’s a crazy conversation I am having with myself. I figure it is how I am processing the whole fault of this situation – as in it is my fault while trying to understand why – I must be a terrible person, but I don’t think I am but maybe those who do think I am can understand this and I am, I guess, trying to see it through their eyes. Again, I can see this is a clinical process, but it is one I am going through – it is so weird.

May be that I need to be appropriately embarrassed by my “fight” with Hello Kitty, and get my mind off of this sinking hell hole of self-pity or self-loathing.  The “why me” is a constant battle in managing a chronic disease such as mine, even more so this second go around. I fight it through humor and laughing at myself.

So, back to Hello Kitty, and this popsicle eating dollar store Hello Kitty gel ice pack in particular…

This is the beast that burnt me

In a nutshell, I wasn’t thinking one single bit.

I sleep on my side, and on the side where I had my surgery in particular. I am one of those people who turns in to a heat emitting furnace when sleeping which made my incision sites (yes, there are two) feel warm, too warm. So, I would wake up and stumble to the kitchen, open up my freezer and take out one of my perfectly sized Hello Kitty gel ice packs and put them in my sports bra and head back to sleep. The instant cooling felt wonderful and in such a state nary a consideration was given to the fact that I put a gel pack straight on my skin. Please take this as a warning, doing this is unbelievably stupid and I know better and still did it.

The resulting second degree burn is paisley shaped and about two inches long and an inch wide, its blister has popped. I will admit that I have to fight the urge to draw on it and make it pretty, if only to be a distraction that I jumped up a whole stage in cancer.

All of these distractions I give myself feel like I am tickling the tail of a sleeping dragon, because the medical news I get never seems to get any better, just gut-wrenchingly worse.

::tickle::tickle::

 

little scraps of wisdom

Before I dig in – happy 11th anniversary to me on WordPress!

I started this blog because I needed one that provided password protection as I worked through something in which I as working with quite a few mean, rich, white, ladies. I never thought I would migrate my very first blog over here, but I did – because of my mom… which bring us to today.

The world, it just keeps spinning, doesn’t it?!?!?!

https://commons.wikimedia.org/wiki/File:Nathaniel_Dance_-_The_Pybus_family_-_Google_Art_Project.jpg Nathaniel Dance - The Pybus family
Nathaniel Dance – The Pybus family

So, for today’s installment of “my mothers reality is just not my own, but I keep learning from her in ways she might probably resent” –

My mother, with a solid gold heart posted this to her social media;

Which is true, absolutely true – with one exception. She is living in a home belonging to someone else (other than her) home and I don’t feel like this applies right now – though in any other place where she has had a piece of the pie this is absolutely true, and I mean it is absolutely true.

And so in my failing wisdom in thinking that she could acknowledge this I commented something along the lines of “if you lived in your own house, it would be”. I will admit that I was probably guilty of being too strait a shooter in this case, I thought she would get that this was true – based on her own comments to me about where she is living.

Anywho…

With in minutes I got one of her texts (I am starting to think that she refuses to call and face shit because she loves the anonymity of texting – you can be as big an asshole as you want without having to visually or audibly deal with the reactions… and  I get it – I am a coward too).

I am the blue –

 

So yeah, I’m not innocent in the exchange.  But, I loved the idea behind the social media post (which is the primary way she talks to me, she really only emails my husband – and rarely calls anyone – which I get, I hate talking on the phone too)….

**blargh**

 

Mom’s – definitely can’t live without them… but (and it is a big BUT) it is what happens after that, which the real miracle… right?

 

 “I believe that what we become depends on what our fathers teach us at odd moments, when they aren’t trying to teach us. We are formed by little scraps of wisdom.”
~ Umberto Eco, Foucault’s Pendulum

 

Dat’s done get done. 8/365

 

What did I get done? The prompt asks that, as it stares at me, from the screen shot on my phone like a duck-faced selfie ready to be giggled at like a twelve-year-old boy.

This is a crazy question.

I woke up today. I woke up feeling like crap.
I thought about calling in sick, then realized I had to take my son to school and just how much is on my personal schedule today.  Decided to take it slow, son and I could be late.  I worked on a grant, watched/listened to The Great Gatsby (audio-book during my solo commute, movie while I worked on the grant).

My day is not over yet. I have a logic model to finish, an event to attend, a child to pick up, some night-time cough and cold medicine to take and a bed to get in to. I think I will manage to finish this up, and thankfully tomorrow is another day!

(from here)

Whats for dinner 7/365

It is supposed to be about what I had for dinner, but that has not happened yet today… but, I do know what I will be having.

This

From this site.

Though I call it cochinita pibil.

I also pickled some onions.

from this page.

I did not really follow either recipe. I made the pork in a crock pot, because I thought it would make the house  smell awesome.  It did! I also improvised an achiote paste – and yes, I keep achiote in my pantry. I also used a blood orange.  Because of the slow-cooker and the improvised achiote paste, the meat is not as orange-brown as is traditional, but it tastes wonderful!

(from here)

Making me mad 6/365

Today I am supposed to write about what is making me mad.

I used to love this magazine, the back page folding exercise was a favorite right next to Spy Vs Spy. 

Aside from nostalgia about the magazine, nothing much comes to mind. I am sure i get mad, but it is those fleeting surges that are really rather insignificant; like yesterday when I was standing at the top step of my porch when my mini great dane decides to jump on me and I almost fell back – but that isn’t anger it is really fear.

I drove to work this morning thinking about this… “what do I get mad about”.

  • One that has been pointed out to me is that I do not like being teased, especially if there can be any inference about my being stupid.
  • I hate people who make fun of others. I try really hard not to do this myself, not always successfully.

Other things upset me, but they do not quite make me mad.

 

 

(from here)