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 Facebook, Twitter, 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"

~ Richard Vargas

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.

Day 10 - 40DOW - tired

I'm tired.

I am lucky.

But, I'm tired.

Part of me feels like I should want to scream.

But, I feel tired.

Another part of me wants to curl up and sleep through this... wake me up when it's over.

I got my paperwork for the oncologist and I left it sitting on the floor by my bed.

CONQUER

CANCER

It reads.

I am curled up on my bed staring at it. 

It looks so optimistic.

Wondering if I'll get turned away because I don't have any "films" to bring with me, just my sad little 2 page pathology report.

Are the 18 days I had to wait going to get pushed to more.

This waiting is painful.

I'm trying to be patient.

And grateful.

And I am...

Really.

The sweet notes and efforts are so unbelievably touching.

But I'm also angry.

At myself.

And scared.

For my loved ones.

And tired.

So very, very, tired.

Day 9 - 40DOW - a little conversation I want to have with men

I think the one thing that has been hardest on me is how the men in my life have handled this.

First of all, let me state this is not all the men.

My husband has been über fabulous; he has been there for me and has been a solid rock and really been wonderful and supportive and asked questions and made me feel like he is in this with me 100%.

It is the other ones.

Like My Boys   - sigh.

I mentioned the one that talked about himself after I shared the news... though he has sent a note back in which he sorta says one brief little thing and proceeds to write about himself for three or so long paragraphs (that is how he is). Another, that found out through his wife, sent a note to my husband saying that he knew. For those two, it was perfect. It fit their personalities and I am so glad. 

I did share with the other boys, and nothing. I am hoping that they might be out of town for a very long time or too shocked at the news and feel kind of helpless and not know what to say or even do. I mean there is something so very personal about talking about your lady parts with a man, I imagine it might be embarrassing or something along that fine continuum for a man to talk about a female friends girly parts in such a deeply personal way... even if you never utter the words cervix, ovaries, uterus, vagina.

The other three male friends that I have told have been able to reply. One with a sweet message and encouragement and stories of how his mother has gone through something similar. Amazingly supportive and wonderful. Another apologized about what I am going through and then turned into a lump that seems to want me to take care of him. The last proceeded to offer a bunch of medical advice based on his experience with his mother and her ovarian cancer.

I can't imagine what it must be like for a male, to hear from a friend that her girly bits have failed her in such a dramatic way.  I am sure that saying "I am sorry that your cervix is going through that" just seem too ridiculous for a male.

So, if you are a male and you have a friend (or loved one) who has been diagnosed with a reproductive cancer (or any cancer) here is some advice based on what I have learned so far;

• If she tells you, respond. Even if you just say: I am so sorry you are going through this. I don't really know how to respond, but I am here if you need me. Repeat this on occasion if you are still speechless.

• Prepare yourself, think about times when you have been scared, or ill, or going through a difficult time. What did you want to talk about? What did you need? Consider your friends personality; is she forthright or private and talk to her. 

• Tell her you are sad that she has to go through this, acknowledge what she is going through.

• If possible, invite her to lunch or dinner or breakfast or brunch, and listen to her if she accepts (and let her know it is ok to say no). Ask her if she needs a hug, and talk to her about things you know interest her; books, plays, etc. Reminisce the old times, make her laugh at how silly you both were when you were younger if your friendship has lasted decades. 

• Don't continuously pick up and stare at your phone or allow other distractions when you talk to her, especially if she is talking about what she is going through.

• Let her know you are interested in her health, and are willing to help. If she is alone, ask if she needs help putting in light-bulbs or other small house projects. If she is married or living with someone and you know them, ask if you should take her partner out and get his mind of things. If you offer, and she accepts. Follow through. 

• Be honest about your feelings.

• If you have a history of doing things together, plan something she can look forward to.

• If you have shared friends, ask if she would like you to let them know. Respect her answer.

• Try not to offer medical advice. Don't send her information on protocols and options don't be upset when she makes decisions that you find odd or extreme or even not extreme enough. 

• Most importantly, continue the friendship... knowing there is a support system out there for her is incredibly important (even if she doesn't take you up on the offer)

I hope that I have given some pointers that are helpful. 

These are ideas based on my experience so far. I am sure that there is some variety among women who are going through this and I am sure that Google probably has far better advice available if you search. 

IMPORTANT UPDATE:  Please refrain from talking about her disease around her children. She may choose to really limit what the kid/s know during this time since it can be super scary, and needlessly so.

Day 8 - 40DOW - gratitude

I've been sick the past few days. Fever and runny nose, you know that route, right? 

The thing is that when you're one week post op, you shouldn't take risks, especially as I move on. Couple this with a change is what I will call discharge. I called my super awesome GYN. He had me come in to make sure everything was ok.

He was not with a patient when I walked into the back office area. And he must have seen me stepping on the scale. I heard him say, the good news is that you look good. I smiled and told him that I was indeed feeling better, but we had different ideas on what good meant. We laughed. He came over and said that he was really glad I called, that most patients would just dismiss the fever as being the cold, and that he was really, really glad I called.

When he came in to see me, I got to ask the big pressing question in my head which, ironically has nothing to do with cancer.

Can we take out that IUD you fought so hard to preserve at my last biopsy, and if you do, can I keep it?

When I go back next week we will remove my IUD and I will get to keep it. I figure that since I actually kept my cerclage (it is a link to a link, so if you don't want to see the knot that held me shut, you don't have to click all the way through and just stop at my picture of Squink) that I wanted to keep my IUD as well. Symbols, if you will, of the two times my cervix failed me... or rather, of when we failed each other.

This exchange actually led to a very interesting discussion of complementary medicine. I really have a wonderful gyn.

So, gratitude... yes. Aside from whomever is coming to see this blog (and it averages about 1 person per post (which may be me since I am writing this) I haven't really told many people in the grand scheme of things. I have told my family, not all of them just the close and a few extended (a couple of cousins, though not all... I suppose I should do that tonight... though if truth be told the cousins I haven't told are part of the group that thought letting me know that my grandmother had passed away via a public Facebook post was appropriate... so, I figured I could return the favor in some way). 

Anyway, I sent out a bcc email to some folks who mean the world to me and who did not know. While I did not hear back from everyone I emailed, I was delighted with who did respond and what they said. I did send it out to a few males, I heard back from two. That was a surprise, they wrote these sweet gentle notes and considering that they are not sweet gentle men, I was touched. 

I also told my fellow board members of an agency I serve on the board for, they were amazing and supportive. One bought me what she called her Catholic cancer kit; a statuette and booklets/cards of Saint Peregrine, some chamomile tea, and Holy water from Lourdes. 

People who have chosen to reach out with messages of support and love have been so treasured. Phone calls, emails, letters, notes, offers of lunch or dinner and other... I feel so much comfort in their messages and offers of time and help.  One (one of my guy friends) even saucily wrote that they would rather look at pictures of food than hear the news I had just given...

For you k...

I am so very lucky that I am not alone on this experience.

Day 7 - 40DOW - Curious George is my new hero

There is something kind of magical that happens when you get a serious diagnosis... You get a new level of patience and tolerance, and you hold closer to what's unacceptable and intolerable.

It is as if one gets knighted and imbued with certain super powers. Probably though, it is just some form of self examination that allows for some serious decision making.

I am not dying, but this may be the closest I get to that in a while. A friend wrote me last night about how I was now in the middle of my "bull fight" and that I had an arena of friends who were supporting me through this. I was struck by their using this metaphor not only because I am a bullfighters daughter, but because there really was some intense truth to what they wrote (and also because they hate bullfights so I was surprised to see them use this).

Without delving into a treatise on bullfighting, I will say that the bullfight is not about the torero, it is about the relationship between the bull fighter and the bull, each playing into instincts and their very special mortal relationship. They are each trying to figure the other out, and while they are separate, they form a symbiotic relationship. I am here in this ring, and I am that relationship, the instinct is driving me to examine my surroundings, and as they said, I have a cadre of people supporting that.

Which brings me to something else that has been swirling in my newly seriously introspective mind.

I recall the day when you heard that someone had cervical cancer that a pretty loaded assumption was possible made:

The woman (since men do not get cervical cancer) was a loose ho-bag and had proverbial round heels

I have heard this whispered amongst the most gossipy of people even to this day. So, yes there is a certain fear of assumptions that people (stupid people) may make about me. I know that I have never been a loose ho-bag and I most certainly do not have round heels. And I don't think that what is happening is the direct result of any karmic like indiscretions I may have made.  I am a human with a cervix and it has betrayed me (yet again).

I sit here newly diagnosed with something the most heinous of gossips use to tear people down and between that and the whole mortality associated with the word cancer causes for an astonishing amount of reflection. Self-reflection certainly, but also about the world I live in; the friends I have and thee ones I had, the adventures, the quiet moments, the rage, the gentle, the sweet peace when my son rests his head on my lap, the Ebola crisis, our southwestern drought, or awfully separatist politicians, the atrocities in the Sudan... all these and so much more... they have become different in some ways now.

At the root, though, these are extensions of curiosity, which is a true animal behavior.  There is something primal about trying to understand what is happening around you.  A certain fierceness comes, priorities seems stronger and there is a certain curiosity that reigns over me. It is like an adrenaline rush, but in a very sedate way (much like the adrenaline the human and the bull need to control when in the ring). I consider how the social animals (outside of humans) interact with each other. Elephants are amazing at this, but so are so many other animals. And there is something beautiful in that... in feeling close to that which unites all of us animals as we try to make sense of the world around us. It connects me to my surroundings, makes me feel a part of something whole and those who think this kind of thing (introspection) is something selfish, elitist, or wrong are just temporarily disconnected from the life death continuum.

Day 6 - 40DOW - another stage, perhaps.

In Old Norse the raven was a popular symbol and represented the power and wisdom of the mythological god Odin who would strike fear into the hearts of even the bravest warriors with his two fearless ravens sitting on his shoulders.

Me Hello again, 3:00am. You kind of suck for me right now, though I recall the days when you were fun and I was much more invincible.

I've moved into the next stage. Or is it another stage?

It happened the second I hung up on the last person in my inner circle.

The very second my finger pressed the hang up button.

I felt stupid and ridiculous for all the crying and sad.

This is stupid, I thought to myself.

You're trying to get attention, I scolded myself.

You are making more out of this than it deserves, my inner voice admonished.

I felt ashamed for my tearful calls and emails to these people who mean a lot to me. 

My brain rattled off a list of the reasons that supports its claim that I am swimming in ridiculous.

There was a tiny voice telling me this was all OK. These are scary new words and it's ok to be scared. But tiny voices are easily shut down.

Is this denial? Acceptance? Are there even progressive emotional states after a diagnosis like this, like the stages of grief?

I know I am not going to die, so why all this fuss? Is it really all that ridiculous that I want my mother and aunt with me, even if this causes them even bigger inconveniences? That I want to monopolize their time and play paper dolls with them, like I used to do when sick and at home as a child.

I always loved paper dolls from other cultures

And the vestiges of anger are poking through in those who mean well and tell  me what to do, or discount my thoughts on what I know may be my treatment options. This is my damned body, not yours.

Is there an angry denial phase? Am I really angry? Am I in denial?

I hate that as my body recovers from the cone biopsy, the aches and pains tease me into thinking that the cancer has taken control... that it has, in a blind rage at the attempt at its excision, rallied like a fire breathing mythical beast and waged a war inside me that I am slightly oblivious to and thereby allowing to grow with wild abandon as I navigate the days until my oncology appointment.

I decided that if it should have a name that somehow the notion of carrion should be involved. I have decided to invoke the ancient Valkyries of my genetic past, the ones that were ravens that became the ears (thought) and eyes (memory) for Odin, that cleaned up the battle fields by eating away at the carrion that resulted.

I want those ravens to remove my carrion and bring me the wisdom to do it bravely.

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.

Blaine the Dane QEPD

Just shy over one year ago, a very dear and special person passed away. his friendship was deeply important to me, he was kind, and gracious and patient with me. I was reminded of his passing, and the flood of sadness at knowing that I would not hear his voice again, just made my heart feel heavy. again.

He was living in New Orleans when Katrina happened, he called me a couple of days after from his cell which I had tried repeatedly to reach him on. I answered breathing into the phone with anticipation; "Blaine, please tell me you are Blaine and that you are OK" He answered; "Darlin', I am OK. It is hell here, but I am alive.". He asked me to call others that were important to him, people that that I did not really know, but had met and knew how to get a hold of... There was such an honor in being that person to him.

I wrote him a letter last year, shortly after I found out he had passed away from brain cancer. Here is an excerpt of that letter.

My dear Blaine,

I always told you that you helped me in ways that would be eternal.

I was recently broken up with one of the most vile and worst of the boyfriends in my life... I was broken but managed to talk myself into going to Long Wong's in Tempe to hear The Revenants play... alone. Not anything I normally did, and everything I was told I should never do.

You were sitting outside on the patio with mutual friends. You heard them ask me about the ex. They went inside to see what was going on. You stayed and talked to me about what I needed to know about being in a relationship with an addict and how to handle it. I recall thinking that you were trying to work me, and you probably were.  The light from the streetlight reflected on your long thick hair. I was pretty broken that night when I arrived. You were extremely kind and I decided to give you a chance. We spent quite some time together after that, hanging out at your casita talking about having ties to the rise of Phoenix; your years in college in Denton, Texas; music; astrology... and even a little about Charlotte… and my vile ex boyfriend.  And in those moments, where we would sit and talk, a wonderful friendship began. That is, until you decided to move to New Orleans because you didn't want to cut your hair. I'm not quite sure how you managed it, but before you left Arizona, you helped me regain a sense of worth that I had handed vile ex boyfriend on a silver platter.  Merely in you appreciating me for who I was, was I able to regain the knowledge that I was a good person.

Those early years between us seemed a diversion. We drank a lot of your cold brewed coffee and talked.        I always marveled that you were such a wonder... You allowed me to relax and have fun. You were a catalyst in returning me to me.

We stayed in touch by email when you moved away and then when I moved out of the country. We would use chat between Quito, Ecuador and NOLA. And you taught me enough to help me get a gig in Ecuador so I could maintain digital contact with my loved ones in other parts of the world. During those times, I was able to swing a visit to New Orleans and stay with you for a few days. That trip changed me so much. It was there that I became aware that you called me darlin', you had always called me that... but it sounded different to me. It was that trip when I felt like the sexiest and most desirable woman in all of New Orleans. You took me to dinner and fed me jambalaya, later you took me to see the Blind Boys of Alabama. I wore a simple black slip as we walked around the French Quarter and you gave me a tour of the city at night. You introduced me to your friends as we walked along the street. I had asked you as we left your place that evening if I should wear the slip, it felt racy and daring and you said "Of course, darlin' you're beautiful." I think that walking around town with you while I was wearing nothing but a black slip was one of the most wonderful moments in my life as a female. I felt beautiful in a way I had never felt before. You may have been the first male to tell me that and that I believed truly meant it. You took me to a graveyard near your home and we talked about death and life as we wandered and sat on the mausoleums, that was so perfect. You told me that you had identified the time and date you'd die. You wouldn't tell me though, you said that it shouldn't matter and I realize that was right. You called me darlin' that whole trip (and never stopped).

I never had "intentions" about my relationship with you. It just was. I never thought of you as a boy friend, much less a boy friend, or even as marriageable. We enjoyed each other.

I recall that once, in Phoenix,  we spent a New Years together. We had dinner and you ordered soft shell crab. I seem to recall that we went to a party and got bored and went to just get coffee and enjoy each other. You looked so handsome in your suit, and you were extra gentlemanly to me.

I'd gotten married and when I told you, you checked our chart and told me we would be very good for each other, but that I was forever your darlin'. I came to visit you again after that and you showed me another part of New Orleans and told all the inside jokes and stories... who wants a nutria po' boy?You introduced me to your girlfriend, showed me the Shaker Shop and your love of good wood. We were friends, and I knew that would never go away.

I was one of the first people you called after Katrina devastated New Orleans... to tell me you were ok. You'd call a every once in awhile and I'd call you. You'd share your relationship horror stories and we could talk about wonderful magical things... I'd ask about my sons astrological chart (it was not done by you, but it was done with software you'd written. So it felt right to talk to you). We would talk about how New Orleans was still trying to recover, and how you felt that the US ignored Louisiana and its recovery, that we could have done more. We would talk about guns and how much you hated commie liberals. It was never contentious, it was always delightful.

Oh my dear Blaine, when you called to tell me about your tumor. I was devastated. Stage 4 is never ever good. I asked if they thought it had been that that had caused the constant ear infections 15 years prior. You said you hadn't thought of that. I think it was, but it is in my nature to find some form of survivor guilt about you. I don't want you dead, but you went ahead and did it anyway. So you leave me here, all the richer for having had you in my life.

I miss knowing that hearing you call me darlin' is a phone call away. It was always so genuine.

Love,

Blair

Originally written 8/6/13