Tag Archives: blair

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 soft song of the white beauty

Searching for the sacred in the midst of my second cancer diagnosis

“The sound we hear when it snows is the soft song of the white beauty!”
~ Mehmet Murat ildan

My mother, I think, realized that I was falling into a kind of despair. I professed that I had lost my faith, though I had not become someone who hates faith – it was just gone.  She had noticed my flailing to make sense of my world, again and suggested a trip up north. A trip that included good food at The Turquoise Room at La Posada in Winslow and drives up to Hopi.

I pondered her offer, and thoughts of how I always loved going up to Hopi as a child were recalled.

I grew up in a magical place, there is a reason it is the birthplace of magic realism. My move to the USA (because I refuse to call it America, because frankly there is North America and South America and the USA being called America has never sat well with me) was not an easy transition, the USA doesn’t understand that kind of magic. There are exceptions to that. One such place was on my regular visits to Hopi as a newly transplanted child. There were two Hopi women who brought me back that magic. One was Helen Sekaquaptewa and the other was Elsie James and interestingly enough I just learned that they were related.

Elsie was local, and I got to see her more often. knew my great-great grandfather from when they both were at the Indian School in Phoenix, as a matter of fact he apparently introduced her to her husband. Whenever I would see Elsie, she would smile and tell me how much she loved my grandfather. She taught me how to make fry bread, often sitting with me at festivals at the heard Museum – teaching me the right consistency of the dough and the best way to pat the balls into a good piece of fry-bread, poking your fingers just so in the middle to prevent it from getting too puffed up when put in the oil. I cried deeply when I went to her funeral, she was extremely special to me.

Helen was the person that showed me that the special kind of magic from my youth in the Andes was present in the USA. I was relatively new to the USA, when my family went up to Hopi for a snake dance (probably back before non-Hopi were banned from freely joining them). I remember sitting on the roof, watching the most amazing ceremony – if you ever get a chance to see a snake dance, you should – they are memorable. I remember being in her kitchen, helping her fix food, and then I remember her taking me outside with her great-grandchildren to forage for wild spinach. Pointing out things that she thought I would find interesting as we walked to the edges of the village on the mesa.

So it was with these two influential Hopi women in my life that gave me a tie to my ancestors and the ability to see the magic in the land that I said yes to my mother, regarding a trip to what I could call my most local sacred space. It was a pilgrimage.

The drive up to Winslow was nice, we took the route through Heber-Overgaard and Holbrook. The Hotel La Posada is a fabulous space, designed by Mary Colter. I have a friend who claims, and rightly so, that it is a space full of feminine power that one can draw upon. We dined at The Turquoise Room.

I struggle as I write the next parts, as I want to honor Hopi guidelines on etiquette and yet share my experience as it relates to coming to greater peace with my own mortality and my hopes that I am of a Pahana clan. I met a Hopi prophet once.

We drove up from Winslow through to Second Mesa and the Hopi Cultural Center (HCC), stopping at the Little Painted Desert (in Navajo) on the way.  One of the things I like about visiting the Hopi Cultural Center is that there are carvers at the edge of the park next door.  There is something special about meeting the person or their family when purchasing something from them. You can find baskets, teas, rattles, bows and arrows, sculptures and Kachinas. I was able to bring to my life, five Kachinas; Crow Mother, Grandmother & Long-Haired. and Snow Maiden & Warrior Maiden.

I didn’t bring Snow Maiden to me at first. We decided to drive to K-town and see what was going on. The story is that a bunch of MIT student drove through once and fixed up a bunch of their computers, promising to return only to not be seen again.  One of the people with me has a son that teaches there and so we went to take pictures to share with them and see if we could get some MIT students to return. The whole ride, the image of her was in my mind, she was beautiful. We drove back to the HCC and held in my heart that she was still there. She was. I talked to the artist and his friend (who made my Warrior Maiden). They shared that the dances were happening this week and that I might see the Snow Maiden if I visit the ones at Shungopovi.

Front and back of my Snow Maiden

There was some discussion about going, but I was given the ability to decide and I did, I chose to go. If you are unfamiliar with attending ceremonies, revisit my link  above for etiquette. We drove to Shungopovi and looked for people standing on a roof, and headed that direction. We found a place to park and walked toward the sound, following people who were headed toward it. W walked through half-finished houses, through water puddles and made our way to the ceremonies.    There were not many white people there, maybe four aside from the three of us.  We sat on a door step and watched the ceremony.  It was special, oh so very special. And it was more exciting that I actually did see the Snow Maiden.

One of the things I learned from my friends on Hopi is that in a ceremony, the Kachinas are the gods… so, being able to see the ceremonial Kachina of the one that called to me was extremely special.

I ended my trip with four female Kachinas and one male.

Another goal of the trip was to find my tumor rock. This is something that my boss entrusted upon me.  When she got cancer she was in Sedona and saw a colorful iguana-esque lizard on a rock.  This was a message to her and she kept that rock, it was a representative of the cancer experience she was going through.  She came back and told me about the experience. I was in a shop a few days later when I found a lizard that could be put on the rock, as a representative of the experience.  When I was diagnosed with my second cancer, many years after hers, she brought me the lizard and said it was time to entrust it to me, that I had to find my rock.  So, I looked for my rock. I actually found two, one just outside Winslow and the other near  Heber.

My tumor rock while Warrior Maiden and Crow Mother watch.

I feel more optimistic about everything now. Instead of saying, for example, “my appointment tomorrow will tell me if I have metastasis” I am thinking in terms of “tomorrow I will learn if we can rule out metastasis”.   A simple exchange of words, but they have so much power.

 

 

like certain portions of the anatomy – 302/366 (catch up)

What was the best conversation I had today in the last twenty-four hours?

I think it was with my son, about our experience listening to the audiobook; The Immortal Life of Henrietta Lacks by Rebecca Skloot.

What a magnificent audiobook, it is a fabulous story. Science made real, and personal.. the way it should be. The book made me cry, it made me laugh, smile… it was profound, and light. It was family and academic.

I recommend the audiobook to anyone. I got mine through the library.

PS – I am now only twelve days behind in these posts!

 

“Conversation, like certain portions of the anatomy, always runs more smoothly when lubricated.”
~ Marquis de Sade

 

 

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)

My favorite accessory 5/365

 

My favorite accessory is probably my extra earring. A small gold hoop on my left ear.

I have talked about it a few times before…. like here, here,  and here.

It seems so strange to talk about this earring on a day (day after, actually) that someone famous died.   And normally I think I would have let the fact that David Bowie died just slide past with a certain wistfulness. But not now.

The news says he died of cancer, that horrible fucking beast of a disease. He had been fighting it for 18 months.  Which fits the same schedule of my own “fight” with this beast.  18 months ago I cut a vacation short because my doctor called with the pathology reports. I don’t know what kind of cancer he had, but that is probably irrelevant. Cancer sucks, it just fucking sucks.  So here I sit, mired with some sense of something that is indescribable – a dash of survivors guilt, gratitude, thankfulness, sorrow – it is a crazy mix. It has its own sound track, his songs that seemed to play at those strange little milestones in one’s life,

One of the more interesting things to come across my social media feeds is a David Bowie reading list. A list of 100 books that he allegedly found to have some influence or importance. I have read 27 from that list, all of those would be on my list of 100 . Some I have no interest in reading, but in careful consideration I think it is more about the cultural milieu in which we found ourselves and I have my equivalence.

It’s a god-awful small affair
To the girl with the mousy hair
But her mummy is yelling “No”
And her daddy has told her to go
But her friend is nowhere to be seen
Now she walks
through her sunken dream
To the seat with the clearest view
And she’s hooked to the silver screen
But the film is a saddening bore
For she’s lived it
ten times or more
She could spit in the eyes of fools
As they ask her to focus on

It’s a god-awful small affair
To the girl with the mousy hair
But her mummy is yelling “No”
And her daddy has told her to go
But her friend is nowhere to be seen
Now she walks
through her sunken dream
To the seat with the clearest view
And she’s hooked to the silver screen
But the film is a saddening bore
For she’s lived it
ten times or more
She could spit in the eyes of fools
As they ask her to focus on

~ David Bowie – Life on Mars?

(from here)

What made me smile 4/365

 

 

It is nice to be smiling again! I lost it (the desire to smile) in the midst of my “recovery” from cancer surgery.  I think it is coming back!

So, it is bed time, and I lay here with my newly repaired laptop and wonder to myself… what made me smile…

There were a lot of good things that happened today.

I got up and made an amazing salad and a ton of turkey bacon for a meeting. I had an amazingly productive board retreat (where the aforementioned food items were served). My second meeting was canceled so got to take a break and go pick up my lap top. I then went to a coffee shop and got myself a latte, then dinner out.

Of all of these, I think the delight at getting my laptop back is the most inescapable. I am delighted that my “brother from another mother” agreed to look at it and fix it up! He even loaded some special treats (like the new OS) on it for me. I am actually smiling here as I type this out, looking at my feels almost new, but most certainly improved, lap top.

(from here)

Current favorite snack 3/365

A trip to get my laptop fixed delayed this post.

I must admit that this topic feels a bit too easy and simple to write about, I am in the mood for meaty, and  my current favorite snack doesn’t fall in to that category.

Currently, I am in love with peanut butter… actually, I am still in love with peanut butter.

I tried to use almond butter, cashew butter, powdered peanut butter to see if I could curb the hankering… no such luck.

I love with apple, and love it even more with a hint of chocolate and salt.

I wonder if this is related to some vitamin deficiency?

 

(from here)

Can people change? 1/365

OK, let me try this – writing every day for one year.

People change, very much and in very many ways. As my son likes to remind me… our taste buds get totally replaced every seven years (his justification when he doesn’t like how something tastes). Our skin gets replaced, our hair grows, our nails lengthen, our skin loses its elasticity… we physically change.

So, I guess we emotionally change too. We become something as a result of our experiences… kinder, gentler, fiercer, meaner, more cruel, more crazy, more lazy.

Change happens.

Doesn’t means it is all good.

Doesn’t mean it is all bad.

but we can hope for improvement.

(from here)

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

a moment, but not the dream… a reflection of a gentle experience

“some moments are nice, some are nicer, some are even worth writing about.”
~ Charles Bukowski

I am reflecting on the gentlenesses that life has a tendency to bring.  Those moments that are often soft, quiet… almost imperceptible.  Moments, though, that are imbued with something that makes them stand out from other moments… not because they are nice, nor because they are even nicer, but because they somehow separate themselves from the other memories and cast a soft glow where they stand.  They don’t have to be personally significant, often one is a mere observer or pulled in by the experience.

I love those moments. I should write about them more.

This past March, sufficiently recovered (physically) to travel, my son (Squink) and I set off to Mexico to meet his student exchange family. A formal program through my son’s school that introduced kids to foreign travel and boosted their language skills. It was a delight. I got to know some parents much better and was reminded why there are parents that I would do best to avoid!

So, Squink and I hopped on a luxury bus with a ton of other parents and their children and made our way south to Old Mexico!

I had a glorious time, met some wonderful parents. Our Mexican counterpart (the parents) hosted us at a wonderful beach party. There was loads of laughter and fun. There was a lot of food, and chasing, and merriment.

A mother, one that had been Squinks soccer coach in first grade,  on the trip with us revealed that this was her first beach experience. She had never seen one before and how delighted she was to have the experience. She was a little timid about getting in the water though. She and another mom and I had all laid our towels on the sand together (me for protection from a mother in our group that I find to be insanely manipulative) . We shared our snacks and laughed… this was in and of itself, a great moment… but it was destined to be greater. We walked along the water line with the mother and managed to get her to put her feet in the water and seemed happy to stay there… but the other mother and I insisted it was not the full experience.  She was nervous, did not want to do it alone.. so the other mother and I looked at each other and declared that we would go in with her… and nervous exchange and we were tossing off our t-shirts and getting down to our suits, and we all ran towards the water and jumped in, all the way in.

We all raised our head from the water at about the same time, laughing and smiling. checking into how the others felt. Our kids had seen our mad dash into the water and we had them swimming around us.  In terms of being a mom, it was a rare experience, especially with  women who are not close confidantes. There was a purity in that moment that made that simple act of jumping in the water together something magnificent, something to be treasured. I equate that experience for the mom who had just had her first ocean experience with the first time I saw snow.  It had a magical mystery to it, and that first time I saw snow was magical.

While there are many wonderful memories from that trip, the one I describe here was magic.  On the long bus ride back home, I told the mother (with previous ocean experience) that was with us when we jumped in the water that it was my favorite part of the trip, she looked at me across the aisle and said to me “mine too”.

I know not to question it too much, to just accept that it happened and treasure it like I do.

This is of Squink and me just after the event, in Mexico
This is of Squink and me just after the event, in Mexico

“I like the posture, but not the yoga. I like the inebriated morning, but not the opium. I like the flower but not the garden, the moment but not the dream. Quiet, my love. Be still. I am sleeping.”
~ Roman Payne