Category Archives: guilt

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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Messages from my mirror

The face is the mirror of the mind, and eyes without speaking confess the secrets of the heart.
~St. Jerome  

Today I scheduled a follow up eye appointment for October.

As I opened up my calendar I realized that the four months would land on the day before I had my surgery, which was when my eye problems started.

In the eight months since my life was spared and my body was torn apart in order to do that… a lot has happened.

One of the things that I find most striking is that my eyes have changed. And I have been trying to figure out what it is that I have noticed.

I am not sure when I started to think my eyes looked different to me, but I recall wondering if somehow my irises had become lighter or cloudier in color. Cataracts at my age?

The crux is that they don’t look happy to me, they looked pained, tired, and perhaps even scared.

I don’t know that I am any of those things, but I am a very different person than I was in 2014 B.D.

That B.D. is Before Diagnosis.

This process has been hard, but the hardest part was learning to stand up for myself. Standing up to a mother and aunt that I know love me, but who felt that age gave them some sort of prize that included tearing me down… I am sure that is (was) not their intent… but as they threw things at me that I would have previously have bowed my head to and ignored but in the middle of my fight to feel whole again seemed unduly cruel coming from them. As I said, I am sure they did not mean it, but they still hurt me very deeply on a level that a doctor could not touch.

I think, perhaps, that is part of the cloudiness that I see in my eyes.

It is also navigating my health after a pretty invasive surgery, the unwanted weight gain, the change in shape, the pain, the aches… the health of my eyes included.

They are better now though, the scars left on them through repeated injury and a misdiagnosis are healing, almost gone. The burden of the change of lifestyle for them is permanent… eye drops for life, they said. Keep them moist, they said. I will, I reply.

But when I got home from my appointment today, I looked in the mirror and still saw that certain kind of cloudiness, and I hoped it was not permanent.

Then there is this.

“Behind these eyes there is a girl trapped within her pain – a girl feeling all the emotions of anger and sadness. She’s fighting for a way out.”
~ Chimnese Davids

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.

Peek-A-Boo – I can’t seeeeeeeeee you…..

Oh my, how many times did I play that game as a new mother…. There were countless delights in the delight and giggles of my newborn son. I loved watching my son take his turn,  cover his eyes, and then swiftly moving his hands away. Staring at me, wide eyed, with the expression of “Mom, I was here the whole time”, laughing as I pretended that I could not see him.
The idea is to learn object permanence.
My brother, when he was young, used to close his eyes when he wanted to be alone (no matter how many people were in the room with him). He was completely convinced (I believe) that if he could not see us, that we were no where near him.
People were and are always present to each other. This is true, even if you adopt some sort of frantic philosophy in which you would argue that everything is not real. That my brother was, in fact, alone and/or there was no one in front of my son when he had his eyes covered.
I thought about these times after I read this article  the other day.
I find humans to be fascinating, we are social beings. There must be some kind of thinking that has an application to technology and how we tend to act towards each other. I mean, why do we act so terribly when we can’t see the face of the other… trolls, for example, thrive on this, I would argue that they depend on it.
I’ve been told that gossip serves a crucial social role for us humans. Gossip moderates our social behaviour… and I think that it applies to this in a certain context. So, imagine if you will, how easy it would be to scold someone you know via text or email if you did not have to see them. One would put their scorn into a few words and be as clear, concise and I might argue brutal… after all we want to make sure the point gets across.
This message puts the other end of the social interaction on the defensive. It is more likely than not, that a series of texts or emails get exchanged with a defensive end and an aggressive end. For delicate social relationships, this is probably not the best way to go about communicating.
This is so hard for people like me who hate talking on the phone. I prefer a text, or an email. I tend to not even want to talk to people. I am an introvert.
This is a modern day reliance that tends to be abused. When I sit on a board or committee, I tend to default to this. I have noticed that feelings get hurt so much more quickly over text or email. I know that I have been on the hurt end. I know I have also been on the giving end…. though not usually in giving of a complaint, but in pursuing a conversation.
So, I ponder the reliance I myself have on technology to communicate my feelings. I am trying to move away from it. Of course, I have this (these, actually) blog(s), they are a public written communication. And my blog is also subject to vitriol and complaint.
Text, email, and even blogs are devoid of any kind of social interaction. When we speak we can at the very least know that the subtle intonations are being heard (even if misheard). When we write, sarcasm doesn’t usually translate. When we speak, there is a possibility we can react to body language. When we text, we don’t.
So much is inferred through sight and hearing. I can see if the person I am speaking to has outward signs of having a bad day. I can hear if someone is making a joke. And though people miss these cues often when in person or over the phone, we are less likely to miss them than if we text.
In the days of “The FaceBook”, Twitter, email, text, instant message… we have lost the physical interface.
If you consider things like FacebookTwitter, or even blogs you can see  how there is a modicum of backlash. Will we learn how to do this better? 
When will learn to be more gentle with one another? 

Revisiting 7 and then 8 – and perhaps a dash on 9 – Find the Beautiful

Revisiting 7

I suppose my last post was a bit premature, though it was true. It is amazing how something gentle can shift everything, even if it is only temporary.

After my post, I went to a meeting for an organization I belong to. I expected to get lots of hugs and inquiries about my health and my status. I was looking forward to thanking people in person for their kindness, but felt shy about the possible attention.

The hugs were nice, the kind words and gestures were appreciated. I was glad to have gone and it was not as much of a burden to my shy side as I thought it might be,

But at the end, as I was walking away.  One of the friends who was there often for me asked me how I was and I replied with my usual. I am good, lots to be thankful for, one day at a time. She grabbed my arm and said lets sit and tell me what you mean by this one day at a time thing? 

I was stunned, she had latched on the the subtle nuance of such an expression and knew that my words were far cheerier than I felt. 

So we sat down, and I tried to explain that navigating the whole thing is complex. Yes, I fully see that there is so much that is good but that there is still the tough that needs to be dealt with. Being told you have cancer is more complex that I had thought, especially given the provisions that no chemo or radiation is needed, like those somehow would allow (key word here is allow)  someone to feel like shit. Please don’t think I am trying to diminish chemo or radiation and that people who have to go through that are somehow exception in some regard… because they actually are exception. What I feel like I am missing is permission to grieve this process and that my grieving is allowed to be more than just sad.  After I feebly tried to communicate these ideas to her, I just looked at the hands in my lap and said, I want to be allowed my pity party, I just don’t know how.

She touched my arm and said you are allowed a pity party and I want to be invited, lets go get some wine together soon.

It was so beautiful being allowed to feel this way instead of being held to strict gratitude. My heart filled with something, I would hope it was grace. 

I am not sure she knew what I was talking about or understood what I was trying to say, but she asked and then listened… holy moly… what a gift. She asked, she allowed me to tell her something closer to the truth about how I am feeling, In a world dependent on daily platitudes (“How are you?” – “I am OK”) it was mind altering to pass that realm and move in to more of the brutal truth.

It is part of the dynamic between celebrating that I don’t need chemo or radiation or that my tumor was so freakishly small AND the whole truth in that it was fucking cancer and it robbed me of some things that I held dear. I am grieving.




I don’t think I am headed to deterioration. I know I will be fine, but this is a part of what has happened and is happening to me. I own it. 

“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.”  ~ William Shakespeare

Then 8

After the sincere gesture of my dear friend, I felt more lighthearted yesterday. It was a busy day, work with extra duties, rush to help Squink finish his homework, a school meeting for an exchange program, and cub scouts.

I was too busy to notice much more than the heaviness of my surgery site.

A dash of 9

We all woke up early, and in good moods. I even served Squink some oatmeal and let him eat it in bed. On my way to the kitchen, I noticed how amazingly pretty my orchid plant was. 

It was beautiful. 


Squink was beautiful. 



My family was beautiful. And somehow everything else seemed less important.

Life is beautiful – 6 & 7

Yesterday was tough, it is a tough spot right now. 

In my attempt to find the beauty, I failed… I mean, I had that poem, but I really found it the day before… and the rest seemed average and even hard.

It all, life, feels sorta like that – hard. 

I feel completely helpless in some ways (some very new ways) because I am just in a state… angry, mad, desolate to name but a few and all of them in one big huge swirling mass of emotional baggage.

I have no patience for this kind of nonsense. I have too much to do.

And, people keep calling me back to earth and reminding me that my behaviour is inappropriate. Which adds to this feeling of mixed mass emotions swirling and boiling and festering. Shame, I suppose. I am better than being an angry person.

I have moments of average, and when I see my son or husband I can claim joy. But that seems so selfish, in a way, to allow my son and husband to be my bringers of joy… what a HUGE burden to place on them. Guilt, I suppose. 

I am trying to remember to breathe, to mediate, to pray… but the words that come to mind when I do this are hard, and angry, and as my family reminds me… inappropriate.

I have and see so much to be grateful for, but these crazy emotions are so difficult to manage. 

How does one throw themselves a gentle pity party?


So let me conclude by stating that I suppose that the beauty I was able to find is that (#6) I am alive and (#7) I have people who love me. There is comfort in that. But, there is a tinge of insincerity in my heart with these right now. impatience, I suppose. 

The kind of beauty I want most is the hard-to-get kind that comes from within – strength, courage, dignity.  ~ Ruby Dee  

Remission

At my last appointment my doctor used this word.

It should be a joyous word, shouldn’t it.
Not a question.
It was a blow to hear it.
As I told a friend, I had somehow thought I was exempt from THAT status.  So, when he dictated his notes and used the term to describe me, I was totally taken aback.
It’s really hard to navigate this disease, especially when there is no chemo, no radiation. It’s like a free pass.
If I were sick from those, I think people would be much nicer about my mental state…
But I LOOK FINE…
So, I must FEEL FINE…
But feeling fine is a lot of work. More work than it’s ever been before.

"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.

update – the last 4 weeks have been interesting

So, what an experience these last few weeks have been.

The surgery went abut as expected.  A scratched cornea in the hospital.
The final diagnosis was the best to be expected. No chemo and no radiation.
Big blessings.
I took a nose dive after I got home… lost over ten pounds in about 24 hours.  
Family took care of me. Friends feed me. I felt/feel deeply loved. 
I have been torn down in a way that has built me back up.
I am exhausted, tired and eager to get on with life.
I even drove once!

Day 15 – 40 Days of Writing – Poetry

“but in the end

if we’re lucky

we’ll have the love 

of a precious few

maybe the ability to stare

death in the eye”


I am not shy to say that I loathe / hate / dislike  am ambivalent about poetry. OK, OK… Most of it. I love Yeats, and Keats. And Robert Burns. and a few isolated bits and pieces from others… I love the poems that Doralice puts on her blog… they are pretty [insert expletive] awesome… but really not much more. I only own poetry books that people give me. I have never purchased a book of poems.

If you navigate to my previous posts from 2011 you will see my desperate and unsuccessful attempt to try and find the magic in poetry that so many postulate that it has… (the posts start with “My favorite Line is..” if you are curious).

I even took a Coursera course to try and get it, figuring that I was reading them wrong or something along those lines. But, I found so much of it to be sad and pretentious and boring and far too much work to enjoy.

Maybe it is that I prefer Hemingway like poets, meaning that they use simple images, words, phrases, and images that make conjuring up the magic story that poetry can be, so seamless and easy.


Is this really true?


Anyway, that line above appeared in my feed on “The Facebook”. 

The whole poem can be found here.

So, I know now that what it is is that I am not a fan of most of the post modern poetry, I love the romantics, the ones who use and understand words with so much more grace, who don’t try to fray you out of feeling a place in our world, I don’t like the ones that push you into spending hours trying to decode what in the hell they mean, that make you feel like you are sitting an a very uncomfortable perch as you try to find meaning in them, that seem haughty and petulant with words meant to tease the reader. Those, I find difficult. I can’t read them without wanting to throw the book they are written in across the room.

I don’t need a poem to make me feel good, I can be pushed to sadness, and anger, and any other emotion but I need to connect to the words. I fight bitterly to do that in those times when I have sought to read poetry.

But that makes me ask, what makes you tick when it comes to poetry? What poems do you love? what poets have inspired you enough to purchase a book of their poems? If you write poetry, what inspires you? Do you feel ridiculous (exposed, vulnerable) when you do?

I am just trying to understand.