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.
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 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):
“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.
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;
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).
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.
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.
Eating is an incredibly social event. So my best memories of food are related to events that had other people present.
After a one year hiatus, we were finally able to host Christmas dinner again and it was as wonderful as I wanted.
We had schnitzel, which has become the family expectation for the family Christmas dinner.
However, there is one part of it that I look forward to every year and that is the desserts that my friend Deborah brings.
Holy cow, this woman has mad baking skills, and the time with which to put hem in action. She brings a selection of these delectable culinary delights that make me unabashedly happy.
She brought four items that meet everyone’s dietary needs (she is THAT awesome). This year she brought a basque pear cake (that she has made before and my husband found memorable enough to request), a bourbon custard pie, some candied pecans, and a chocolate salted caramel tart.
That chocolate tart was awesome!!!
So the last “good” thing I ate was Christmas day food… from the soup to the schnitzel to the amazing desserts.
When I did the search of the tart to try to find a picture of the tart I ended up seeing a picture of my least favorite dessert ever; the Sacher Torte.
You try being married to an Austrian and finding this dessert unpalatable. I told my husband this shortly after we got married and his sister had the hotel send us a torte in the mail (they serve her wine there).
“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.
“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
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.
“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
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.
In our society, the women who break down barriers are those who ignore limits.
~ Arnold Schwarzenegger
I would hope that women get exposed, personally, to women who break down barriers. Actually, I hope that men get exposed to women who break barriers too, because this is still something that needs to happen. I am lucky, in 1980 my cousin was the second best archer in the world. Amazon comparisons aside, this was HUGE. Women have been slinging arrows for eons, but to get to a level where you are second best… in the world… wow, she is pretty impressive in this respect (and many others). How wonderful is it that we live in a world where we see more women breaking barriers and becoming awesome at what they do.
This took a long time to come for me. Born in an era that was just starting to feel out the women’s rights movement. Add to that the fact that I was born and raised in countries that have very “traditional” roles for women. So, breaking barriers was not something I even thought about until, that is, I moved to the United States. Before that, I think my most adventurous aspiration was to be a flamenco dancer.
Now, please know that I do not mean to demean flamenco dancers by that statement. There is a ton of back story to that. My father bullfights. I spent the first ten years of my life either watching him bullfight or helping out at our ranch that raised fighting bulls. Bullfighting is the glue that hold my relationship together with my father. I live in a world where I both hate it and love it. My more intimate knowledge about it provides for this. Like many things in life, it is both beautiful and brutal.
My father is well-respected among bullfighting circles around the world. I went to visit a friend of his when I was an adult and he told me how he met my dad. My dad had been trying to get a chance to bullfight right after we had moved from Spain to Ecuador, but it is not something one can just go to the park and find a pick-up game. So this friend of my fathers recalls that he ans his friends kept getting these calls about this silly American that wanted to join them in a bullring. After several months they realized that they were not going to get rid of his persistence so they had him come along. At this point in the conversation, my father’s friend looks me in the eyes and tell how he and all his friends saw my dad get in the ring and were stunned by how good a bullfighter my father was. He is still good. Anyway, I grew up with enough privilege that I really believed that I would end up a mother of many children with a wealthy enough husband and live in a country other than the USA. Needless to say that did not happen.
I recall moving to the US just at the start of the fight for the Equal Rights Amendment. Which was the same time that my cousin was an Olympic archer, my aunt had won Emmy’s and was becoming an artist. There was something empowering and horribly frightening about this. So, at this point in my life, my tweens and early teens, I realized I could be anything I wanted to be if I wanted it hard enough.
So, I hung on to my dream of having lots of children (I have always wanted six, for what it is worth) but now I could be that and do anything. In high school I was stunned when a friend stopped me after me describing my future self and said that it was great I had these ideas about what I would do with my children, but she had noticed that I never mentioned their father or a husband. I am sure that my mother had to work so very hard and had to fight to provide for my brother and I after my father took off with another woman and left us high and dry was the impetus for this visioning I was doing.
So, I chased dreams.
It wasn’t until I was thirty that I was able to revisit my father and his bullfighting passion. I was back in the US and newly married and he invited me to join him for a special convention in Texas. Through a random series of events I was able to share a room with a female bullfighter. I had never even really imagined this. I was aware of women like Conchita Cintrón and Bette Ford, but hadn’t really thought about it in terms of how many crazy walls they had to tear down. To put this in perceptive, in 1998 I attended the bullfights in Ecuador and on the last day I asked the man who was our former veterinarian if I could join him in the callejon (the inner ring, where the bullfighters and their assistants hang out in a bull ring). His reply was to tell me that I could because that the ban on women being there had been lifted a few years ago… which makes the ban on women in the inner circle to have been lifted around 1997!!!
So, here I was in a room with a woman bullfighter by the name of Raquel Martinez. A petite and beautiful blond woman. I felt like her opposite in everything, I was tall to her short, brunette to her blond, squishy to her toned, make up less to her flawless make-up. I was in awe. Never in my growing up as my father’s daughter had I ever considered this, and now in the presence of a woman bullfighter I was in awe. She was kind, gracious, gentle… had a great sense of humor, she was both strong and vulnerable. It was an amazing time. She was the first woman I ever asked for make-up advice. We talked about the men we had loved, and how crazy it was to try to be a woman bullfighter. I have not seen her since that time, but she has remained on of my treasured experiences. She was part of a group of women who were tearing down walls, and she was amazing.
For the record, I do not want to be a bullfighter… I would much rather dance the flamenco.