Category Archives: random

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?

 

 

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The fossils of dead superlatives

I am the best at beating cancer.
Though in some respects, there was not much to beat.
In the end, we caught the cancer so early it was only the size of a grain of salt.
Yes, I talked about that before.
There are many strange things that happen when that words gets tossed into your life.
Trying to make sense of it may be the hardest.
In my case, it is managing the whole thing of having CERVICAL FUCKING CANCER.
It is, after all, considered to be a sexually transmitted infection.
And then there is managing that stigma.
I am finding my path as an advocate for the HPV vaccine. And am meeting with many people about how to help spread the word about the vaccine. I will state that I would not wish what happened to me on my worst enemy, and I had it easy.
Anyway, the stigma thing.
Some people that I tried talking about this with dismissed my concerns as my being more upset about it than the situation merited. In my fragile state I listened to that too much. Several months out from hearing this.. I am calling bullshit.
As I talk more with others, it is very clear the stigma is there.
After all, it forces us to have a conversation about S-E-X.
Because, that is understood to be the main way that you get it.
At a dinner to talk about HPV recently, a dear friend revealed that she had cervical cancer. And I watched her talk about her experience, and the others at the table leap at the chance to blame it on her husband at the time, as he was older, more experienced. I was pretty horrified by this, one could tell the others at the table liked her. Most likely they did not want to have any unpleasant ideas about her and her choices in behavior. We were meeting to discuss how best to spread information about the importance of the HPV vaccination among a particular religious group. As I heard them accuse the man, the hair on my back flared a bit. I reacted this way because it was judgement…  this happened and lets blame the older ex-husband because that is easy to do (though there is no way of knowing if it was the correct thing to do).
My tendency is to assume that everyone is having sex.
What that translates into can vary;
  • waiting until marriage
  • waiting until in a committed relationship
  • Sex on the first date
  • Sex with strangers
  • Sex with multiples
  • and on, and on, and on…
We have chosen, as a culture, to decide that one (of these) is better than the other.
We tend to judge men and women who choose to move outside the boundaries we set. That is, those of long term, spiritually certified, monogamous, committed sexual relationships.
And while this may present a cultural ideal, it really is not the case. One just has to look at the research coming out of the Kinsey Institute to be witness to this.
It is unfortunate that the assumed cultural demographic for women with HPV and cervical cancer tends to be among what is often referred to as the loose woman. 
Working in the early 80’s in some health promotion programs (breast and cervical prevention models) it was often a topic of discussion that cervical cancer was either transmitted by 
a) loose women or 
b) the husbands who had sex with loose women who would then  give this disease to their ever so chaste wives.

The truth is, is it really any of our business to worry about past choices? Past experiences?
We can all assume that the women who’ve had a diagnosis of cervical cancer have in fact had sex. It follows that in some way they have been exposed to the virus either through her own experiences or those of her partner.

The possibilities range from 
a) being raped (which is much more common than is reported, regardless of how you feel about it being deserved or not, and that is a whole different conversation) to 
b) choosing to have sex with a partner who is infected.
The only thing for certain is that there has to be at least a third person. This is in regards to the sex lives of a couple for HPV to happen (I don’t mean a three-some per se, though that is not excluded). The couple can be gay or straight.
Divorce rates indicate we participate in a form of serial monogamy. We can follow that with the idea that people who remarry have been exposed… which helps accounts for the idea that 80% of our American populace has the HPV virus.
But there is that stigma, it hides out there as this article recounts and is poked fun at by this Onion piece.
Dear me, I seem to be ranting…
Announcing I had cervical cancer allows people to make  assumptions about my sexual behavior. These assumptions create a need in me to discuss my health and sexual history to allow people to form a correct opinion of me.

Hell, even my husband was lamenting that he hoped  that he was not the cause for my disease,

In the end, my cancer was something that my body was unable to fight and the cells decided to mutate…  in most cases, this is something that bodies able to fight on their own.

A vaccine would have helped.
Oh, and by the way the incidence of oral cancers is on the rise and in men and these are associated with HPV too… how is that for a fun conversation. Lets talk about sex baby!

~sigh~
The funny thing is that I titled this post just because I read this article and liked the phrase enough to want to use it.  I did not intend to write a diatribe about my dislike of judgey people in terms of sexual behavior, but it happened… I suppose it is something I am still processing. one does not hear the word whore cancer and move past it easily.
Anyway, I love words, I love concepts… concepts like the consensus of definition, etymology, and epistemology (to name but just a few).

I have had several friends comment on the cautiousness in which I choose my words.  However,  when I am excited  I tend to fall back on strange metaphors, similes,  and synonyms that are tied up in my multi-cultural background and present what to some as gibberish. My  friends are able to figure it out or at least pretend to. 

I do love words, I like to listen to them, make sense of them, argue and chat using them… and I was charmed by this idea that remnants of my ancestors word choices are alive and well in my current vernacular.

The Language of Silence

I am almost always the first to wake up in the house.

Usually, I manage to open my eyes before the first of the two alarms I have.
I listen to my house. I listen to the street outside my window. I listen to the ping of my automatic coffee maker. I listen to my husband sleep beside me, and I listen to see if my son is waking up in the other room.
On rainy days, I listen to the drops of rain against the window.
I look for the signs of morning. Rays of sunshine streaming through the windows, the light on the carpet in the hall next to our room.
I sit up and reach to grab my robe from the foot of the bed and wrap it around me. I swing my legs to step onto our cold floor. I putter towards the kitchen, grab a mug and set it on the counter. I putter to the fridge and open it to get the half and half. I open the carton, as I swing around back to the mug and pour enough in to just cover the bottom of the mug. I put the creamer back and swing back to my mug, pick it up and carry it to the coffee maker, which has already started and is seconds away from giving me the refuge I seek. Once my mug is full, I cradle it between my hands, feeling the warmth. I hold it up to my face and inhale deeply. I love the smell of coffee and cream. I think about the farmers who raised my beans, who milked my cows and give them gratitude.
I putter back to my bed, stopping along the way to peek in on my son, and smile at how gentle his ten year old face looks in the early morning light, the light dusting of freckles on his nose and cheeks. I watch his chest rise and fall for a bit and continue my way back to bed. I set my mug on my bedside table and push my pillows up against my headboard and slip back under the covers sitting up. Once I am comfortable, I pick up my mug and take another breath to inhale its aroma. I take a sip.
I enjoy the silence, the brief respite from life in that moment.
I pick up my phone and check emails, both work and personal. I check the news and open up Facebook and Instagram to see what the previous day brought…. I wait until I hear the alarm in my sons room go off, when I will get up and help him with breakfast.

And as I do these the speed of life picks up and moves along at an ever increasing pace… and won’t slow down until the next morning when I wake up.

Originally published at https://medium.com/@blair_necessity/the-language-of-silence-531433a88d93 on January 12, 2015.


Gentleness

I feel a little better today. I still am working hard in my brain as to what to do about everything in my post yesterday. I am sure it will come to me.

One of the images I use when I want to feel better is one from my life back in Ecuador.

Specifically, being on our ranch and sitting on the grass higher up on the mountain.

This is the mountain our ranch was on:

Pasochoa

I have no idea where our ranch was in relation to that picture, but I have many good memories there.

The one that I am calling to mind is about sitting on the soft mossy grass, just above the tree line. There is a grass there that is soft like moss, but is a very small almost light green ground cover. It has these tiny pink berries, berries so small you can’t even see them unless you are looking closely. I can feel the high Andean wind burning my cheeks a bright red. I feel like I can hear the sound of God in that rush of wind blowing past my ears. I weave my finger in to the soft plants, smelling the earth. Listening to my horse hobbled nearby, and the chit-chat of my family enjoying a picnic. I feel connected to the earth, an extension of her, like a small dendrite-like messenger. I feel my hair blow across my face and whip around wildly in the wind. I pick the tiny pink berries and put them in my other hand, which is cupped in my lap… filling my cupped palm slowly with these little light pink jewels. Fairy food, I am certain it is fairy food. I put them in my mouth, one by one. tasting their faintly sweet juice. I watch our cattle off in the distance, grazing.

There is something about that moment that is so gentle, so peaceful, that it can still evoke a certain calm when I am weathering a storm.

"Sorry about your whore cancer, lady"

I am getting  fighting  AT  (ok, ok) resisting giving in to the angry stage.

I think.

I keep get the strangest urge to throw bottles at walls, so I can watch and hear them break.

I get why this happened to me. I just don’t like that it happened (is happening) and I don’t like the stigma.

So, The Onion, known for its tongue in cheek humorous articles, published this article.

Considering that current experts estimate that 70% of Americans have been infected with HPV, it is pretty spot on and does it pretty well.

I actually thought it was clever, but the problem was that I happened to see the link on The Facebook (here).  And the first comment I saw, was the one I used as the title of this post.

That is the thing, there is that stigma. Hell, I have family members that I could see using the same or similar terminology. And it is so “unspoken” among most people.

And it hit a raw nerve. Because this is something women have the consequences to, not men. So women get called all sorts of horrid things.

Here is the thing. I don’t think I am a whore. Never was.

But I feel like I am being called that. And it is pretty prevalent, the stigma about women who get it. There is just so much about this I want to scream at.

I mean having your life attached to the word cancer is bad enough, but cervical cancer?!?!?! “That slut cancer”.

Consequences, I suppose. I try to make it less hurtful… but I can’t seem to right now. I was never a slut.

I get angry. I get really pretty fucking angry. And it ebbs and flows and I try to keep it at bay because I don’t want it to consume me. And I don’t know what to do about it.

Day 5 – 40DOW – I don’t have Ebola

Restless nights provide for interesting lucid thinking. I’ll start from a doze-like-state with some thought usually a random one.

At this point, it’s 3:00 am and I am snuggled up in our Arizona pines under a heated blanket. I have arranged for a Skype call with my sister in England for later. But what woke me was the thought; “I don’t have Ebola”. Which isn’t that far off since we have a gentleman up here in a self imposed quarantine after his return from a mission trip to Liberia. News link
It’s also interesting that I’ve had to, on a couple of occasions, give friends permission to worry for me. When something scary happens to someone you care about it can be hard. But it’s tough to understand since I’ve always felt the right to deal with these things as my body dictated. I’m also surprised in the ever slight shift in my self. I’d consider myself to be nurturing in many ways, I tend to love people fiercely when something about them speaks to my soul, and as I manage the phone conversations and emails, I feel decidedly more nurturing to them. It’s very subtle, but it’s something I’ve noticed. I wonder if it’s the result of the emotional exhaustion or just an internal shift and I wonder how temporary it might be… this urge to tell the people I love that are family and friends to give in to how their body is telling them to react. Maybe it’s because I see love in their reactions and I’m honored and humbled by its reciprocity.
Maybe it’s because it’s now 3:30 am and I need to get more sleep.

Here is a picture of a bull with a B on his butt.

Day 4 – 40DOW

Emotionally drained.

Moved through the last phone calls, began the personal emails and then prepared for and began to draft the mass email to friends whom I respect. 
At this point I became exhausted and took a several hour nap.
 
People, so far, are being gracious and supportive. Except for the one friend who heard the news and (not unexpectedly) proceeded to talk about themselves for 40 minutes. Thankfully, it caused me to laugh in some form of delight.
A last minute trip north, just to get out and get a break. 
Everyone on their respective devices, random conversation about physics, religion, books.
Two more personal contacts left… 
I feel better today.

Day 3 – 40DOW

My prima gave me this.

I made it through the first night with the “C” word.

I slept better than I thought, but I think I woke up more often, though my fitbit says otherwise.

There is a part of me that wishes I did not have to tell anyone. And I mean anyone. That I could forge through alone, because, frankly, it would be easier for me mentally… relationships take an awful amount of energy and I suppose I want to save it (energy) for what is important,

But, I can also admit that I just won’t be able to go through this alone. I need my team. I have the core. I am glad for that.

I hate very much, though, that I find that I break down in tears, and tend to do that when I am rummaging through closets and cupboards. My friend says that she did her crying when she was in the shower.

I hate that I keep telling my son that I keep getting dust in my eye. Because I just start crying randomly… even when thinking about red-lights and changing lanes.

But you want to know what scares me the most? Telling my friends. My close friends. The people whom I would want to know if something difficult/similar befell them. I am struggling on how to tell them. Family is easy, I know they will stick by me. Extended family is easy, I know they will manage in their own way. Strangers (like my son’s teachers or parents at Squink’s activities) are super easy, mainly because I frankly don’t give a fuck what they do.

But those who fall in between nothing and genetic filial obligation… they scare me. I have started the process. I have called most of the people that I truly value, the ones I hope I don’t lose. There are a few left, but they have birthdays and other events going on, and since I don’t really know what is going on with me (in terms of what is going to happen ) and won’t until I see the oncologist, it can wait.

I wrote a friend who is on this same track right now and asked what to say, what to do, did anything work better…? And she confirmed my fear (which I knew but I was hoping that my awkward introversion was at play) that there is no right way.

She also touched upon how there is this period of not knowing, and that you don’t want to fling the diagnosis out, but then secrecy happens and people get nervous. So I think I am going to ask if I am free to emulate in a grand unveiling, if you will indulge the flourish, of what is going on with me.

I am starting to feel like I am fitting pieces together, the pieces of what I need and want in order to move through this. I know I want to proceed with rose tinted optimism. I consider myself to have my feet firmly planted in the ground and am aware of all sides of things, I want to get through this without wallowing in dark and negativity that is generated by other people. Why, do I want this? Because I know I am going to go through all these different stages and I won’t allow negative Ned’s and Nelly’s” to bring me down… I want you to lift me up, to sing with me, to smile, and say “Blair, this will all end up OK”.

So, I suppose not only am I afraid of the friends I will lose because they are burdened by a fear too great to be with me through this, but I am afraid of the friends I will chose to lose because they are too negative or pessimistic people to be around. I am still trying to come to terms with this.

I still breathe.

Day 2 – 40 DOW – was pretty shitty

Not my cells, but similar enough cells

Cancer

in-fucking-situ (I hope)

A cause for celebration. Really. They say.

But holy fucking shit, calling an oncologist for an appointment for yourself is something I wouldn’t wish on anyone, Not even someone that could use a strong life lesson or a swift kick in the butt.

You get that call. The one that gives you the pathology report and tells you next steps and it is so heavy and burdened that the air gets thick and it is almost impossible to breathe. Partly, I wonder in retrospect, if is so that you don’t miss a word about what you are being told.

The call to the overly cheerful oncology office to book your appointment.

The calls to those you love. Your husband, your mother. You aunt.

Contemplating how to make the calls to your other loved ones; your father, your cousins, your friends.

Return calls. the news spreads. You get calls from your brother, A message from a professor from when you were back in medical school (who is now a close colleague to your mother).

Priorities mulled.

Pathology reports faxed. scanned. emailed.

Decisions to be made,

Priorities re-mulled.

What do you tell your young children so they can navigate the stress they know you are feeling without giving them scary words that will make things worse.

What do you tell your friends. How do you tell your friends. Do you tell your friends? It is easier to tell strangers.

How do you navigate not knowing what the oncologist will say without Googleing yourself sick.

And again, priorities re-mulled.

Fighting the tendency to blame yourself.

Trying to be strong because you need to be for others, because the last thing you need is to take care of someone else when this is about you (and not them).

Trying not to listen too closely.

Wondering if you will lose friends. Knowing you will (I’ve worked in cancer, it happens) wondering who it will be.

Wondering what do you do. Do you burden friends with the news?

Having to deal with the part of myself that feels socially awkward and introverted.

Remembering to breathe.

Philip K Dick said that cancer was “the process of creation gone wild…”.

Thoughts of prudence and of recklessness. 
The mantra of thinking “it could be worse” repeatedly. intermittently. nauseatingly.

Untie the haggis and why wear pants – 40DOW – Day 1

I spent yesterday at the hospital. The hospital my son was born in. The hospital my nephews were born in. The hospital my half-siblings were born in… and some other some such relatives.

This time it was for me though, I had to get some girly things taken care of. Which reminds me, ladies… get your check ups.

Actually, that reminder is super good place to start… because that is where this journey started.

A friend posted about getting a cancer diagnosis on Facebook, and what a crazy ride it had been. I read her post, with tears in my eyes and realized it had been a few years since I had done mine.

Actually, it was more than a few years. That is what I found out when I called the doctor to schedule an appointment.

Not a smart move on my end.  Things like DES are a part of my history. I really should have known better than to let so much time lapse, but I did.

My luck is that I went in time. But I needed some work. and I got it.

So ladies, get checked. Men, make damn sure the women you like (even just a little but whom you know well enough to enquire about their vaginal health) get their lady bits checked. Regularly.

But I had fun at the hospital. If such a thing can be fun.

I hate IV’s… hate them, hate them, hate them!


I invoked my grandmother by going home in a muumuu that my aunt had bought for me… a gorgeous caftan of multiple colors and GLITTER!


I can’t even begin to describe its awesomeness.


I took pictures for as much as I could. (for the record, I love selfies, I love looking at them and I am OK with taking them and I am especially fond of what I laughingly call “we-we’s” but most people refer to as “groupies”.


My favorite we-we. ever. but only sorta, because Squink isn’t in it.


For some reason we began referring to my cervix as my haggis and made a plethora of jokes about them that involved playing bagpipes and other such hilarity that probably only seems funny if you were a part of the conversation. The whole haggis thing was compounded when I get home and after much sleeping and woozying find I got an amazon email that was, ironically, all about haggis.


An email about haggis.


My arm bands had the colors of the flag of the countries I was born and grew up in… in spite of my aunt insisting my blue was really Greece (it isn’t).

Amarillo, azul, y rojo (and NOT GREECE) and featured on my Instagram account


My aunt, brother, and husband picked up Squink and so he was there when I got out of recovery…

I can’t tell you how much joy I felt in knowing that his little body was there waiting for me. And when he saw me he was sweet and gentle and it was beautiful.

And then I found the glitter from the muumuu had managed to get on everyone and you know life is good when you are glitter bombed. Right?

Excited that a caftan experience awaits at the end of this!


Why wear pants when you can wear a muumuu? 

~ Beth Ditto