A year in my life

A year ago, I had sent my son off to Europe and missed him terribly.

I think it was the Starbucks app of the week that was a picture a day app. I downloaded it, because;
1) it was free
2) I was thinking about documenting how much I missed my son

So, I took the selfie... and time flowed and I stuck to it and yesterday I got a notice that I had taken 365 photos.

One year, one insane year.

A son sent abroad at a very young age and being diagnosed with cancer. Not really sure which was hardest at the inception.

I missed my son terribly and was so happy when I reunited with him.

And hearing you have cancer sucks, sucks, sucks... and somehow it infiltrates everything.

But I missed my son and that was the hardest thing ever, and yes.. in a way, it was harder than being told one has cancer.

But the cancer things has its own craziness, craziness that makes everything outside the norm seem so much scarier.

So here is that one year of selfies, and as I sit here trying to figure out what all to tell my oncologist when I call him tomorrow, I think I look so much happier now than I did when I missed my son so much!

A seasonal urge

I grew up in the land of eternal spring... some even called it eternal fall.

I never have experienced four strong seasonal changes... usually it was two... but it could even be argued that there was one season unless one counts "more rain" as another season.

Ecuador had that... rain and more rain, it was eternal spring, or something akin to the glorious autumn season of the southwestern US.

Yes, it is confusing, but the big seasonal denominator for me has been the presence or absence of rain.

Today was that kind of day here in my beloved American Southwest... overcast and lightly rainy. A huge high pressure system that seemed unexpected causing tension headaches and achy bones. The release when the rain managed to push past. The smell of creosote wafting in the air.

I always feel a different kind of contentment in the rain, no matter in what part of the world I am in. If there is rain, I get this feeling. It isn't particularly productive, but is a certain kind of peace or contentment. Though I do tend to write more when I can hear water droplets hitting the windows or the cadence of rain on the tin roof of my back porch. I feel the magic that my favorite authors are able to convey about this world, the kind that feeds the stories of Borges, Allende, Esquivel, and Garcia Marquez. While I do not claim that there is a Latin Exclusivity to the genre, as a daughter of its lands, I can understand the origins every so deeply.

When it rains, the world feels magical.

Rain in the magical jungle city of Tena in Ecuador

"The seasonal urge is strong in poets. Milton wrote chiefly in winter. Keats looked for spring to wake him up (as it did in the miraculous months of April and May, 1819). Burns chose autumn. Longfellow liked the month of September. Shelley flourished in the hot months." ~ Helen Bevington 

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.

It was smaller than a mustard seed (or “How ya doin’?”)

“How are you doing?”

I get asked this a lot. I mean a lot more than usual, a lot, a lot. I imagine it is the result of their knowing I was diagnosed with cancer, and with a subsequent surgery.

It is an even more complex question to answer now.

The nuances of recovery from my surgery are interesting.

On one level, I am so incredibly lucky that it is a true cause of celebration. I wonder how rare it is to get a cancer when it is under 1 mm.

In one study that I read about cervical cancer, the data regarding the tumor sizes (not direct to the study, but the data was presented) said the mean size was 2cm and the median was 1.8 cm (of the tumors in the study).

I was at 0.8 MILLIMETERS

a grain of salt.

       a grain of salt, on a pinhead.

Smaller than a mustard seed.

The average size (from that one study) is like a marble, or a quarter, or a stamp.

A stamp, rather enlarged

I am so insanely lucky. However, my cells had made the crossover from being atypical to being cancer. The cells in question had moved from being In Situ to being nefarious (micro-invasive was the word) things…. So I said get it out.

It was aggressive in terms of the treatment I chose. I didn't, however, want to revisit this conversation of “You have cancer” again. At least not for this.

So, the surgery for a grain of salt included my  the removal of entire uterus, through a long abdominal incision. It included the removal of my Fallopian tubes, sixteen lymph nodes, and some tissue that surrounded my uterus.

For something the size of a grain of salt.

The surgery was traumatic. My body does not feel normal, though it feels like it should feel normal. No visible parts are missing, but there is the scar that travels along my lower abdomen.

My girly bits and stomach are numb. My scar itches. There is a heaviness where I image the lymph nodes were. Cold causes a strange ache. I get exhausted easily and try to balance everything.  There is something I will refer to as exudate. My stitches have yet to dissolve. I don’t feel good in the sense that I feel limber and mobile. My abdomen feels  tight and yet wobbly.

Source: http://en.wikipedia.org/wiki/Daniel_Johnston

Musings, womenblair, cancer, death, emotions, gentleness,grain of salt, gratitude, hysterectomy, musings, non-being, philosophy, small

This post originally appeared elsewhere.