Monthly Archives: July 2017

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.

 

 

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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?

 

 

Knowledge is only a rumor

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…

4311888797_7edc345a9f_b

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:

Skeletal striated muscle

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!

 

a flash of lightning in a clouded evening sky

“Hers is a timeless life weaving through other longer lives like a flash of lightning in a clouded evening sky.”
~ Beatriz Fitzgerald Fernandez, Shining from a Different Firmament

I think that the hardest part of this is trying to stay in a good mood, up-beat, positive. I am a period of waiting and it is just too much time for me. I miss the good ol’ days of daily appointments meeting, doing new things, meeting new people, taking new tests. i was exhausted during that phase of this – but things are settling, and people are on vacation, and I can’t seem to speed up time to get this crap experience behind me.

https://www.museodelprado.es/en/the-collection/art-work/women-gladiators/ee076233-5858-4a35-a5c0-9ce631cd5382
Women Gladiators by Jusepe de Ribera [Public domain], via Wikimedia Commons
People keep calling this cancer experience a battle, a fight, a difficulty… blah, blah, blah. I hate those words, and you can throw in journey in to the mix.

The truth is, that there is a certain call to gird up one’s loins in this stupid “experience”.  I mean there is prepping oneself for a cold and then there is cancer.

The other side is that in spite of the certain enlightenment we have in the western world about disease, cancer is still pretty weird.  I could share horror stories with you of a few of my dear, beautiful, well-meaning friends saying crazy shit to me about my new-fangled diagnosis – there are still people out there that think a radical mastectomy is the way to cure this beast and further they feel it is OK to imply that if I choose otherwise would be tantamount to saying I don’t want to try to stay alive for the sake of my son – how incredibly fucked up is that?  For the record, I think they have a brain injury, I tried to be patient.

Then there are those who are convinced that injecting THC into my boob will make it all go away. Bless them, but its exhausting because they love me and will argue with me about its advantages. I don’t for one second believe that doing this will cure me of cancer, it might well be part of the process but it isn’t the only one.

Maybe the weird part is that in spite of being the one with cancer, I am still forced to care for those that love me enough to talk to me about their opinions (none of these are medical peeps, they have a different level of communication about this with me).

I have a friend that is a nurse that is coming with me to most of my appointments and who checks in on me and for all the love in the world, isn’t trying to write my narrative of this experience. She knows, for example,  that I hope to avoid having a port if possible, so can advocate for me if I need it, but also knows that if it isn’t something I should avoid that she can walk with me in those facts.

Words matter, in spite of an all-encompassing need for the individual to throw out mental garbage via vocabulary – they matter –

I am not say that cussing like a sailor is bad, I love my salty friends, they keep it real for me.

I am not saying you have to temper each comment before you utter it, some of the greatest shit I have ever heard can come from those who have a tendency to insert their foot in their mouth.

I think I am talking about the need to talk for the sake of fucking talking, which is a luxury that should be rarely offered up.

Life is hard enough without verbal lashings for the sake of;

  • talking
  • sounding authoritative
  • funny
  • elitist
  • or what the fuck have you.

But what distinguishes talking like I refer above and talking – as in the real deal?

I think, and mind you this is my own thoughts, and this is a journal, not some expert piece of advice for the masses – this is me thinking out in type.

So, I think that a skill that is lost is that talking (the real ind)  is about the relationship between two or more people trying to communicate ideas to each other.  I don’t know if in our digital age that we can recognize this, mainly because we might be too busy trying to show someone we love them by sharing a silly buzzfeed video.

I do have people, though, that are cheking in on me – sending cards and the best emails and texts. they are so wonderful and when I get their notes I am humbled and am able to refocus on the gift of them in my life.

Like the one that sent me this for Independence Day:

Our rebel Pope (I say rebel because he is a Jesuit and they are apparently considered barely  Roman Catholic) said this:

“To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
~ Pope Francis

That quote was about a baby in the UK, I think – but there is something there that touches on what I am saying and you don’t have to be pro-choice/life/retrograde-abortion to try to appreciate it.

It brings back the experience I had when I dealt with cervical cancer and having people wanting to overwrite my narrative with the narrative of others – that should never have happened (I am still a little bitter). This is my story, I get to tell it.

In person, to someones face, I tell it very differently. On here, it is very raw, unfiltered, ever-changing, fierce, and scared-shitless, full of shit grammar and spelling.

My sister posted this song today on her social media, so as part of my quote/picture/song – I post it here (I miss her and my baby brother, they are my half siblets and live too far away).

Crisis management isn’t the same as crisis maintenance 

The Edge… There is no honest way to explain it because the only people who really know where it is are the ones who have gone over.
~ Hunter S. Thompson, Hell’s Angels: A Strange and Terrible Saga

This second surgery is a beast, I’m wiped out. I have felt off and with so much insanity in my life right now I wasn’t sure from whence it came.

I took the perfect spawn with me to surgery, it was outpatient after all. I’m not sure it was the brightest move I’ve made.  He was visibly upset by seeing me with an IV in my hand. He couldn’t stop touching and kissing me as we hung out in pre-op. My surgeon, who is a fucking rockstar, managed him very well. She asked him to please not correct her if he heard her say something wrong, it played right into his ego and made him more relaxed.

I went out to visit my mother, resting with an incredible view of “the supes”. I still felt squirrelly and off. Thankfully my Schatzy knows me well enough that he did the two things that turned the tide.

I’d like to imagine that anyone getting a prognosis that is worse that initially identified would feel the same.  I lay on the couch staring out the picture window when my dark side took over. I was trying be quiet and listen to my body in order to feel what muscle had been cut during surgery. 

As I did this I felt black blobs of doubt surround me, hopelessness descended and I hit a certain kind of despair.  My husband said he had been watching me and saw my face change, so he ran up to me kissed me and whispered in my ear “don’t do this, we will make it”. I felt the darkness evaporate.

Eve (The Nightmare) by Paul Gauguin

Later, as I lay on the couch again, my husband rubbed my feet. That foot massage was a miracle, the feeling of off and squirrelly dissolved. I began feeling more human again, something that I hadn’t realized I had missed feeling.

It’s interesting to note that a foot massage has been a transformative event both times I’ve had cancer. 

So here I am today, back to trying to find humor in this completely fucked up situation. 

Grateful for a tribe of people helping make this easier on my family.  Grateful for a family that’s here for me. Grateful for my mother and allomother.

So where’s the humor? I’m searching for it high and low. I promise.

::deep breaths::

OK

My surgeon used medical grade superglue on my incisions. Which is pretty cool.  I have two incicions one near my armpit and the other around my nipple. Only my armpit incision needed to be re-opened. Which means that I have a nipple that is covered with flakes of superglue. Yes, the superglue is flaking off and I’m reminded of eucalyptus trees and of peeling bark. It’s weird. My nipple, however, looks great… underneath it all. 

This is all starting to feel like a comedy of errors when coupled with my Hello Kitty “freezer burn”.