Tag Archives: vulnerable

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):

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the sky is empty

“I talk to God but the sky is empty.”
~ Sylvia Plath

Ge’ez, Sylvia Plath is sure a downer!

When I was little, I thought my grandparents lived in heaven, not because they were dead, but because they lived in Arizona (a stretch to see how I got here, I can imagine, but bear with me)….

I came to visit them with this kind of sky:

From this kind of sky:

So, when we went to visit (usually in early summer) our plane went up above the clouds, but never came back down through them… so, they must have lived in heaven, right? Please, also note that this was also around the time I was very saddened that Zeus and the pantheon of gods was not “real” and that my mother found me once, kneeling in the front yard praying to the moon-god. I was a wildly spiritual child.

Considering my family did not practice any real form of faith as I was growing up, they were Protestant in Roman Catholic countries after all – and any Protestants that lived where we were tended to be evangelical missionaries and not the most fun to be around – add in that we were considered to be “converted” and there were all those heathen Roman Catholics and indigenous cultures that needed to be saved. 

Many people tell you to lean in to your faith in trying times like this. It is amazing how much you seek something out, something that requires faith. But looking for something that is comfortable, that does not mean I must have a rebirth in any fashion, that means I don’t have to believe fossils were put on earth by satan to lure us to his evil ends,  something other than the spiritual connection to the cancer I got is because I have mommy issues, something other than I am not godly and got cancer because I am being punished… 

fuck – fuck – fuck – fuck

FUCK

How do you find faith in the midst of such fucking insanity.

Notice that is not a question, though it probably should be.

Anyway.

I learned that I had a sizable chunk of muscle removed with my last surgery. Granted, it was not the breast surgery removal of days of yore when women begged for a radical (nay, they wanted uber radical) mastectomy – the kind that took out muscle and bone (think ribs and clavicles). I’m missing 2 inches of chest wall muscle… and I’m still in disbelief… faith.

The way humans think is sometimes shocking to me. BUT, and it is a YUUUUUGE “but”, I get it. While my head understands that if treated correctly a lumpectomy has the same results as a mastectomy and you heal faster – but WTF does treating something correctly mean? My tumor was muscle adjacent, so does that mean that one of those a$$hole cancer monsters escaped and is it hiding somewhere? Somewhere that chemo and radiation can’t find?  Faith.

This is where finding faith again is crucial – but it is so freaking different this go around, faith that is.

If you are prone to that which is beyond the physical and don’t judge, I can share how I am re-learning how to lean in to faith again.  The thing is, I will most likely appear a heretic to you.

The one thing I know, is that I don’t think faith is about re-birth (that concept is what caused me to abandon faith before)… if it is for you, that is awesome – but I don’t buy it one effin’ iota.

I, beautifully enough, am finding this process of rediscovering faith kinda cool. and a bit painful.

It is especially nice since there is a disquiet in this process, of being a person diagnosed with cancer. It was present the first time and it is present again this time.  The subtleties of it that I experienced the first time is magnified, but both of my cancer experiences, so far, are incredibly similar… at least internally.

Because my first round was stage 1 and caught super early and only required surgery it was subtle. I felt like a fraud of a cancer patient because phht, it just needed surgery. People (most of them), aside from the time during the surgery put me at the bottom or low-end of a cancer continuum (that was practically equated with being cancer free).

In this round, where I am currently listed as stage 2B (and probably only because they did not take out more nodes and we will see if that changes after the next battery of test results come in), it is still sufficiently low on that continuum that I still feel like a fraud (though only less so because, after all, it looks like I am getting chemo and radiation this time) and the news about the cancer itself has just gotten progressively worse. Many of those same folks from my first experience are still like “well, you aren’t dying”.

I am adding silently  in my head; “that I know of” because I am still waiting for more tests and results of tests.

No, I am not dying (well, at least I don’t think so, but as I said… I will have a more definitive answer after I see the results of the next test). Trust me I celebrate that!  I am not healthy, I have a chronic disease that gives me (according to my radiation oncologist) an 81% 5 year survival rate (though this varies depending on the sites with such data). Yes, 81% is super awesome, but before this all went down I was with most others and had the general average population of a smidgen over 98% . A 17% drop in my life expectancy is still a crappy thing to have as a part of my life.

Trying to balance a good attitude with crippling doubts is a strange place to be.

I struggle. The struggle is real. Not because I have a Christian need for an after-life – but because I want to be more than just a life form – I want something divine to be a part of this experience, I want to lean in to something when I am so riddled and consumed with anxiety. A set of rituals that I can be a part of, a community where I feel like I belong. IN my head I often say to myself, I just want to be loved through this.

I read about Sherman Alexie today, something that I struggled with, but which spoke to the spiritual little girl in me that the unseen world is there for those that listen.  (the story is here).

I have found great comfort in so many people in my life, women and men – willing to be a part of this process with me.  I hate to lean on them, how do you answer the unanswerable to someone like me desperately seeking?

 

 

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::

 

The next start of the ongoing saga of the wounded Amazon

Nearly three years ago I was told that I had cancer, it was a fucking ridiculous experience and it was barely stage 1.  This planet does not do cancer well.

Anyway, I am a persona that brings in all senses to my experiences. The visual images that came to me as I was navigating that fucked up process were related to Norse mythology, and most specifically Huginn and Muninn, Odin’s crows.

odin2c_der_gc3b6ttervater
From here, in Portuguese

They were the guides for me during the process. Guides in that they became my eyes and ears, separate of my body, as I made choices and suffered through their consequences. and only in my thoughts and in my dreams.

I love crows and that whole lot of birds in the Corvus genus. I have one tattooed on my back (it is taken from my maternal family crest).

Their images were leaving me, slowly their image disappeared from my dreams. I missed them, but time was passing and I, as a full person, was healing.

Several weeks ago, before anything new was going down (and I will get to that in a moment), they appeared, perched on the shoulders of, what I then thought was, a Valkyrie.

I thought “hmmm” and continued on with life,

Then, shit started going down.  A routine mammogram resulted in suggested follow-up. Follow up resulted in suggested biopsy. Biopsy, a mean mother fucker, told me cancer.

again

My physician called me with the results. His first question being “where are you right now” as if that was not a clue that bad news was coming.

“Home” I reply.

“blah-blah-blah invasive carcinoma of the duct work blah-blah-blah” is all I recall from his end of the conversation… oh, except my response… which was “FUCK”.

I somehow hang up and call my oncologist and ask for an appointment.  I get one, I am told by a friend to get a second opinion, I get three. I am now one week later, waiting for my visit with Dr. Third Opinion and I really have no clue how I managed to get to here from that day.

However,  yesterday as I left my visit with Dr. First Opinion, I realized that my crows had appeared not on the shoulders of a Valkyrie, but on the shoulders of an Amazon warrior.  And, frankly, with the ways myths go they (Amazon’s and Valkyries) were probably based on the same group of bad ass women. Why do I think so, you may wonder? I have no clue, but it is my thoughts and it just felt right, but then it is probably some deep recollection about the rumor about them going around that they used to cut off one breast so that they could be better archers. Ha!

Some images of some bad ass Amazons through the centuries;

Source
Source

Source

Is there such a thing as an art based EULA?

“A good book deserves an active reading. The activity of reading does not stop with the work of understanding what a book says. It must be completed by the work of criticism, the work of judging. The undemanding reader fails to satisfy this requirement, probably even more than he fails to analyze and interpret. He not only makes no effort to understand; he also dismisses a book simply by putting it aside and forgetting it. Worse than faintly praising it, he damns it by giving it no critical consideration whatever.”
~ Mortimer J. Adler, How to Read a Book: The Classic Guide to Intelligent Reading

One of the biggest arguments I ever got into when I was in college was about artist (and specifically to the discussion then, authors) responsibility.  It was one of those life changing conversations and it has played out in my mins for the last 25 years in varying forms and with multiple applications.

One of the concepts that was brought up minimally then, but seems much more relevant now is that of the artists spectator. The actors viewer, the artists watcher, the authors reader.  I would argue that art is a social process, there is an end-user and a silently understood agreement (a EULA, if you will) between the artist and the one who “experiences” the art. I am not saying that a painter paints for a specific audience, I am saying the artist paints for an audience. This plays out in many ways.  I am not speaking to message of the art form, nor am I speaking to interpretation of the art form. I am speaking about the end-user. The watcher, reader, listener, or viewer.

I think we readers, watchers, viewers have gotten piss spoor about this part of the social contact. I know of only a very few people who consistently do these things actively, and even they slip up. We have gotten lazy, we react before fully reading, watching, listening or viewing. It may be that artists have stopped giving a shit about that their audience thinks or responds to their work, but on some level they have to want the people who experience their works to not pass by it in ignorance? I don’t know.

I, personally, write in the hope that the person reading my works thinks about something.  While I may be working through something deeply personal, having a reader respond often offers me greater insight. If they misunderstand, it helps me learn how to be clearer.

 

 

I have a friend that writes. They have an incredible vocabulary, though it is sometimes a bit archaic. They are pretty good at giving the reader what they want them to react to. I would say it is a mark of a good writer.  The interesting thing with my friend though, is that there is a general laziness with interpersonal conversation. That is frustrating. I imagine that the marvels and instant gratification of social media play out in these things.  Based on how I see communication working out now a-days, people seem to like to get their panties in bunch. They read a post, or see a picture and form these hard-line reactions.

I am no saint in this regard. I caught myself doing it all the time. it was to the point where it became personally embarrassing. Thankfully I have some friends who loved me enough to tell me to go back, read it again.  So, I would pull my panties out and go back. And 99% of the time, I had reacted rather than read.

So, what are some things that I do that help me know I am doing this?

If something pisses me off, I go back and read or look at it again. Occasionally I will read it out loud, or view it in a different place.  I pinpoint the words/images that I am reacting to. I ask myself what are they trying to communicate? If I am still unclear, I ask questions.  Am I reacting very strongly, then take a break and go back to it later (in instant gratification land, this can feel tough). In the case of written work, write it out. Look up words that you may not be sure about how they are being used (this one has been fun, for my friend with the archaic vocabulary, I sent them a list of all the words I had looked up when I had read their work… I thought it a fun conversation).

In the world where texting, email, posts, and comments have become a regular form of communication, it might behoove us all to become better at what I might call active appreciation.  Actually, you do whatever you want… but as for me, I am going to try to listen, watch, read, and view  with more attention.

whose boat is on the running stream…

“What should I possibly have to tell you, oh venerable one? Perhaps that you’re searching far too much? That in all that searching, you don’t find the time for finding?”
~ Hermann Hesse, Siddhartha

ecbracletred22-020

We are cleaning house to host Christmas. And as is often the case on such endeavors (at least in my life) things have been found that elicit powerful and profound reactions.

I was tidying up our mantle and found a stone jar with a fossil lid. Curious, and willing to delay the tidying up to explore, I opened it up only to discover something I probably needed to find.

It was a 5 foot long string of red beads.

as i pulled the strand out, I thought back on when I must have bought it. 17 years ago, when I was in Quito and roaming one of the many folks selling things in the parks.  I remember picking this one out because it had two “gold” beads in it.  I twisted the string of beads onto my wrist, feeling a simple pleasure as I felt them wrap around.

It is a simple standard of beauty that has carried with me. Many of the indigenous women, of varying tribes, in Ecuador wear them. It is said to ward of evil and to protect the wearer. One will see these wrapped in various widths and on various ages of the women in Ecuador. Red bracelets are actually something pretty widespread and come in a variety of materials.  It is a familiar one to me, and I have worn it on my wrists for these past few days, a certain level of comfort in seeing its length wrapped around my wrist. I touch them, roll them against my skin, admiring the variety of sizes the beads come in.

Last night, I was in the bath tub and wondered if the string would suffer from getting wet. I rolled and untangled my bracelet and gently laid it out to dry.  This morning I picked it up and twisted it back on my wrist.  There was such a comfort in that ritual. I wondered how many other women had gone about starting their day by twisting these beads around their wrist, in a mix of superstition, habit, and because of the gentleness of it.

 

red beads
This is my red bead bracelet.

“For such is the way of it: to find and lose, as it seems to those whose boat is on the running stream.”
~ J.R.R. Tolkien, The Fellowship of the Ring

And my doctor says I’ll be alright… But I’m feelin blue

I love me some Tom Waits

 

 

I had what was my one year follow-up appointment today… even though it is one year plus 47 days from the day I had my surgery.

I do love my oncologist. My oncologist told me about grants they have written to the CDC . Exciting stuff!

Then he looked at me and said he had something he thought I would appreciate and that he would come back and show me what it was, after my exam.

My doctor returns with a frame, inside of which is a pathology report from 1960. It sounds extremely modern, excellent description of the sample but what was the most fabulous part was that it was signed by Dr. Georgios Nikolaou Papanikolaou. The father of modern cytopathology and responsible for the test that saved my life.

Thank you, Dr Papanikolaou

giving it meaning?

“Love is just a word until someone comes along and gives it meaning.”
~ Paulo Coelho

Read about words here.

 

When you go through this list… what have you been called?

girl
tall
tom-boy
ugly
pretty
mean
young
silly
dirty
selfish
scared
stupid
Just like your father
just like your mother
gringo
spic
retard
cunt
asshole
jerk
fucking asshole
immigrant
Christian
Atheist
boring
whimp
coward
bitch
crazy
anal-retentive
psychotic
lame
square
stiff
baby
chickenshit
pussy
wuss
bat-shit crazy
bonkers
kooky
freak
whacked
spastic
postal
nuttso
loony
gross
disgusting
creepy
skeeve
creeper
scum
rat
thug
worm
scumbag
slacker
Amazon
attention whore
bastard
commie
douche
hussy
mess
lurker
skank
pooper
poseur
socialite
snob
elitist
wanker
white trash
nerd
geek
dork
bookworm
dweeb
gomer
has-been
slut
loose
hoochie
trick
hoe
fugly
mangy
turd
twat
lame-o
reject
pig
thick
fat

How did being called that make you feel?

I have been called all of these.

How do you judge me now that you have heard what others have thought?

If you ask me how I feel… I would have to say that I still don’t know what to think, other than they have hurt… to varying degrees.

If it quacks like a duck… it must be stunned

Today, during what was originally supposed to be a quick glance through my Facebook feed I read the words “IN WOMEN WITH PERSISTENT CERVICAL CANCER”.

It was in all caps too. PERSISTENT CERVICAL CANCER.

fuck

the urge to cry from worry

fuck

I stared at my screen thinking; Is this a thing? Can women get cervical cancer… on repeat…

My joints started to ache, my skin flushed with needle pricks, my face got hot, I held my breath.

Is this really a thing?

How did I miss this… I mean, I am a medical school dropout for chrissake… one who has worked or volunteered in breast and cervical cancer issues for most of her adult life…

In my head, in that stunned moment after reading that, I had the idea that some women just kept getting cervical cancer… like one gets a cold… they are both viruses, after all.

So, I (somewhat reluctantly, yet with incredible haste) went to my very trusted medical internet sites to see if there was such a thing (complete with a search for an applicable ICD9 code) as Persistent Cervical Cancer.

OK.

deep breath

the urge to cry from relief

Turns out, it is another way of saying metastatic cervical cancer, and just as I had thought before I had read that post cervical cancer recurrence rates (really, it is 5 year survivor rates) are linked to stage of initial diagnosis.

fuck

I wonder if my conversation with a person (a woman who had also had a cancer diagnosis, though of a different variety) just minutes before seeing this, where we talked about how certain things just tend to have an initial thought that you have a recurrence, played into how I reacted (what a sentence this is?!).

Your tooth hurts  – it has spread.

You get a bruise – it has spread.

You have an ache – it is a tumor.

but… maybe not.