I bought a Mother’s Day card for you.
Today I went to the farmers market in Waco, TX. it’s been a while, so pretend I have magically appeared here, with trials and adventures behind me. I’ll share that tale when I’m ready. If I’m ready.
There was a flower stand, with these little jars of poppies. I don’t normally buy cut flowers, as I feel to bring them home is to witness their death, and death is sacred, and I’m never sure I’m up for that contract.
But today…. They called to me, and I gave in. I’m up for that sacred contract, to witness their glory and their deaths. It calls to mind so many women, this contract… my mother, my grandmother, even my fathers mother. But this part, calls to mind women still in glory, alive and experiencing the world, and my heart is so full of love for them, for their gentle touches on my life, for their being present in the now.
The poppies send up their
orange flares; swaying
in the wind, their congregations
are a levitation
of bright dust, of thin
and lacy leaves.
There isn’t a place
in this world that doesn’t
sooner or later drown
in the indigos of darkness,
but now, for a while,
shines like a miracle
as it floats above everything
with its yellow hair.
Of course nothing stops the cold,
black, curved blade
from hooking forward—
loss is the great lesson.
But I also say this: that light
is an invitation
and that happiness,
when it’s done right,
is a kind of holiness,
palpable and redemptive.
Inside the bright fields,
touched by their rough and spongy gold,
I am washed and washed
in the river
of earthly delight—
and what are you going to do—
what can you do
deep, blue night?
The bad guy gets a chance at redemption.
My husband cringes at my love to cheesy movies, shows, and songs… the latest of which was my excitement over the third season of Cobra Kai. The continued saga of the main characters in the 80’s movie The Karate Kid. I started watching it on YouTube when it first came out a while ago, and and thrilled it moved to Netflix. In the red hot global mess that was 2020, streaming platforms have been a friend, right?
I know the show is cheesy – but I am in love with redemption arc of the story and how that looks and how many original cast members are returning and what the new ones are like.
I remember watching that original movie and hating the character of Johnny Lawrence. He reminded me of all the mean people I had met in my “big long life as a teenager… and in the years since that movie first played – he had retained that villainous status. All those 80’s movie villains are in the same boat. I will admit, at first it was hard to see the redemption story, but I gave in to that – I extended some grace to that plot line and I was hooked!
This is less about the movies and the show and more about the whole notion of redemption. We are in times when it is so easy to dismiss people on things that are, in the end, rather petty. We are also in a time when true reckoning for past behaviors should and must occur.
We all are being forced to hold a mirror to our selves and are positioned to take a hard look at who we are, what we have done, and what we will be doing in a way I don’t recall ever being a part of the cultural conversation among my communities.
I often wonder where redemption and grace intersect. There is a time in our own redemption stories that we need to hold our selves in a space of grace and there is a time in the redemption stories that involve others where we must hold a space for grace. I think that grace space might be the hardest… both for ourselves and for others.
The other day I received an award for being positive in the face of adversity. I essentially got an award for getting cancer – though it is more specifically about how I chose to handle it.
Costumes, wearing costumes did it!
Having cancer three times in under five years is pretty messed up, but it is a part of my story.
Thank goodness it is just a part – but while living in it, it seems so all encompassing – like it has always been a part of my story.
“Don’t tell me the moon is shining; show me the glint of light on broken glass.”
― Anton Chekhov
After I accepted the award a few people asked me how I could be so funny in such a dark time – my response is that I did not have a choice.
That is not to say that I don’t have dark moments, where I picture my son at my funeral not at some time in the distant future but rather now – in his early teens with a thin shadow of facial hair waiting to make it s entrance on his handsome face. Those are dark moments, they are filled with an internal scream so howling and loud that it hurts my body with a pure sense of pain. I hate those moments, but they happen, and they are hard to move away from – but I have to.
Usually I am able to stave off feelings about my impending demise by imagining holding my grandchildren, touching their tiny little bodies with a wonder that only a grandmother could have. These thoughts power me, they give me something strong and important to keep my body and its insanities in a place of hope and wonder.
But every night when I take my chemotherapy pill, it all visits me again as I wrap the pill up in a marshmallow (to prevent mouth-sores) trying to make it swallowable… I am almost halfway through this process – so many long months are ahead of me with this. I see my oncologist monthly. Filling my head with questions I need to ask, symptoms I need to report.
I am looking forward to a time when I feel more compelled to write about watching my oncologist play the piano so beautifully that I was moved to tears while I surreptitiously recorded his playing. He played a collection of Russian composed songs – and Beethoven’s 5th. I feel an affinity to Beethoven, he lost his hearing – something so vital to what he loved to do. While I lost my breasts and my womb, and being a woman was something I love to do.
But the glint of light on my broken glass is that my breasts and my womb are not me – just like Ludwig Van was not his hearing. They are a reflection of our capabilities, one of the shards of broken glass – but never the whole.
I find myself asking myself the following two questions:
Will I live better?
Will I live longer?
I recently found out I have cancer – again. The third time over all.
This time it is called recurrence. Localized recurrence.
At this point it appears localized, and I have no reason to doubt that – but recurrence makes one super fucking skeptical.
This news is borderline traumatic. I was hoping for some good times where I could enjoy being considered cancer free.
The thing is chemo and radiation did not work so there is that – where to go next.
I did decide on a bilateral mastectomy
and I am pondering reconstruction
but not sure of what is next….
but the wind has been knocked out of my sails
and I am floundering
I know that I want to live
and I get so upset when I can’t envision holding my grandchildren
or seeing my son age into the man he will become
and so I push myself to see those things, and they are murky
My head space is filled with so much right now, everything is cloudy.
“I feel like I’ve swallowed a cloudy sky”
― Haruki Murakami,
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.
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?).
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:
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.
i am either
been my thing.
~ Sanober Khan
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):
- the Roman goddess of wisdom and strategic warfare, and the sponsor of arts, trade, and strategy.
- the Roman goddess who was the protector and special counselor of the state.
- 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):
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.
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.
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.
“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
How do you find faith in the midst of such fucking insanity.
Notice that is not a question, though it probably should be.
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?
Knowledge is only a rumor until it is in the muscle.
~Papua New Guinea Proverb
I enrolled in an education program.
Now, I love learning so much that I would say that I am one of those people that is most definitely considered a life long learner. I don’t mind learning the bad with the good, and going into strange learning experiences (something outside a classroom, really), but this last one seems weird to me.
I will be attending chemotherapy school. Actually, it is called Chemotherapy Education – but that is pretty much the same thing as going to school to me.
I hear that my final-exam will be fucking brutal and will last fourteen weeks (from first to last). It’s followed by a six and a half weeks of radiation final-exam, which so far seems to have no prep class, it is just a test after you meet with the “professor “.
I also have the pathology report from the last surgery. I have clear margins (Yay!!) but they took out a 2 inch chunk that included a lot of the item pictured below (they removed two chunk, just one had muscle included). It explains why it hurts so much. Granted, there are moments when I only notice a certain heaviness – but then…
Pain – sharp and stinging. With nothing that feels like its impetus to explain it (yes, it is just doing it healing thing). Much like labor pains that kinda leave you breathless and taking deep breaths to work through.
Then, “the cancer” is on the side I sleep on – which makes sleeping extremely uncomfortable and includes propping my side with pillows and not really resting comfortably at all through the night. Thankfully, I know this will pass.
Muscle is a beautiful thing, especially skeletal muscle – just look:
So, I listen to it, and when that electric feeling of my muscle healing itself I try to get quiet, and let the process happen. The waves of nausea this process involves is pretty fascinating too – perhaps it is my body prepping me for chemotherapy?
I was hoping to be an exception and not get a port, but one of the potential agents in my chemotherapy cocktail is so caustic that if I move and a bit drips out it will destroy my muscle. Holy Fucking $hit people, it will destroy my muscle – and I am going to have it in bloodstream – how miraculous is my circulatory system that this chemical that destroys muscle doesn’t do the same? (this is a place where faith starts to come in for me, more on that running dialog in my brain later).
Seeing my surgeon today!