Tag Archives: vaccines

TEDx yzpdqbil*

I have to admit, I am currently a little obsessed with TED talks.

It all started with this one talk – I think I saw it sometime in the fall of 2008;

I was floored, and moved, and thought “what a great way to put things out there”.

And since this was new I kind of waited to see what it would bring. I made my mother watch it. I sent it to my friends, and have fondly referred to the talk and my reaction to it ever since.

I was not a Ted-aholic, though. I would only reach out to Ted videos when I referred to them.

But something changed.

As I was preparing to host a movie screening with panel discussion, and I could not find anyone willing to serve as master of ceremonies, I realized that the job would fall to me.

So, I began watching them to see what makes for a good speaker, what are things that are compelling, what things did I like.

I even made Squink watch them while he would take a bath, the bio-luminescence ones are super cool!

I think I am a mediocre speaker. I have some strengths, but plenty of weaknesses.

But after the event, I had the idea of a themed series of talks, something like the Ted talks I had been watching for cues.

It is possible:  https://www.ted.com/participate/organize-a-local-tedx-event

But I think the one for Phoenix is taken.

And they frown upon “themed” events.

And when I thought about it some more, I saw so many possibilities and had to chuckle at the notion that each one had at least one “rule violation”.

I thought about one dealing with the many faces of cancer; from the physicians that find it, the pathologists that decipher it, the oncologists that treat it, the people who have endured it, the families of those who suffered it, the nurses who care for them, the scientists researching it.

It would be good, but it is a theme and violates the programming rules.

Then I thought about what it was like growing up as a third culture kid, and how cool it would be to get other people who grew up that way. I think my friend Doralice would have some wonderful insights, as would my friend Sparrow, and my friends Jeff and Erica. I think it would be interesting to give voice to that kind of experience. It is a bit unusual.

I have met so many interesting people, I would love to have an event to hear them talk… the Jivaro indian that had to flee his tribe because he wouldn’t convert, the people who started putumayo, the circus people, the rodeo folks, singers, entrepreneurs of the ridiculous, those off grid (the hardest to organize), photographers, movie stars, cartoonists in the golden era, explorers, survivors, hedonists, narcissists, and so on.

That got me to thinking about what would happened if I was told I had to give a Ted talk…  kind of talk could I give? what would it be about?

My ideas for Ted events is large…. but the list of things I feel I would be qualified to talk about is pretty non-existent.

I suppose I could talk about how being diagnosed with cancer was life changing in some spectacularly subtle ways… or what it was like being born to a bullfighter father and an explorer mother, though that is really their stories. About being a child of divorce (booooooring).  What it was like managing a high stress pregnancy, most of which was spent on bed rest (gag me).

At this point in my life, I think I would talk about why I think vaccines are important, from a theoretical view, and cultural view, and prevention view, a mothers view, a survivors view,

What would your Ted talk be about?

*stands for examine your zipper, pretty darn quick, before I look (a childhood phrase)

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A RANT – Catching up, with myself

So, for starters — the biopsy was totally just scar tissue.

But that event led to some pretty radical discoveries.

One thing is that I deeply resent is the people that tried to write my cancer story for me.

There were people who tried to decide my treatment option.

There were people who told people false information about my diagnosis, and refused to tell the real one. “It was DES, that is my story and I am sticking to it”, they said. (for the record, it was not caused by DES).

Oh, who am I kidding it was one person!

The fact that this person is also a cancer survivor makes me all the more incredulous. And bitter. And angry.

The one place I don’t feel gentler and kinder is in those who try to take from me.

We don’t live in a world where we have to whisper the word cancer any more, where the sheets and mattresses are tossed because they are “contagious”…

It is my story.

I don’t like people who interrupt my story with thoughtless perversions of their own.

We seem to live in a land of poor listeners…

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I resent the anti-vaccine movement. My cancer is vaccine preventable. Men and women get cancer from a virus called HPV – we have a vaccine for that. Why on this earth would anyone choose to risk getting cancer????

Read this for a far more articulate version of why: http://www.voicesforvaccines.org/say-something/

I had a preemie, a medically fragile baby… to think how clueless I was when I took him out with me after he was born… it makes my heart hurt. I don’t feel much kindness towards my friends who support vaccines but pretend to be anti-vaxxers because they are afraid of conflict (or in one case because they thought it was ironic and funny) .I don’t feel much kindness to my friends putting seriously and DANGEROUSLY false information out there about the problems with vaccines.

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and lastly…

I lost god, or God, or G_D or however one wishes to spell it.

I am totally fine with this, I actually feel some relief in some ways.

It, ironically enough, happened on Easter Sunday.

I was reading some blogs, and came across a few that made claims that were completely incompatible with my thoughts on God… and as I pondered that incompatibility I asked myself about the roots of that… and came to the conclusion that I can’t buy what they said. That I think everything is far grander than they think and that they are so limited in what God means… And just like that, I left God where he belongs, in the hearts of people that need that.

I still strongly believe that religion (in any form) has some very important cultural fundamentals and is vital for many people who struggle to make sense of things… but that as I struggle to make sense of things, that ideas on God no longer require fitting in. I am happy. I would encourage people to find God… I just don’t. I don’t need re-birth in a Christian sense, I don’t need to be saved in a Christian sense, I don’t need those things at all to find my path in this world. I can make all of those transitions and shifts without God. I also don’t consider this to be a simple kind of faith.

To be fair, though… most of the things that caused me to go were about Jesus. Not God, that is if you consider them separate (in any form) and while I followed a Christian based spiritual path, I never felt that Christ was my “It” guy. I had believed that I understood God, but that all got called in to question. And I realized that the version of God that I had in my heart was based on the magnificence of things, most of those things being based on reason, some of those things based on how I made sense of the world. But, and here was the kicker, I really did not need God to keep that delight in magnificence. It was there even as I let go. I still deeply love this world. I am not about to become an atheist poster child. I don’t even like the word atheist. But I don’t feel like I fit the mold for agnostic any more either.

I am still navigating this path… but I am ok, I don’t see it as a path of reason, it is just my path.

Maybe, someday, I will change my mind again, though I feel less inclined to care. It just is.

I still believe in vaccines, though!

Day 1 – 40DOW – viewpoints on vaccines

This morning was a struggle. 

I am trying my damnedest to get this to happen:

If you can RSVP for a Phoenix event click here.

Learn more about the film by visiting hpvepidemic.com.

I struggle because I want it to be successful 

The team I am working with has been UNBELIEVABLY supportive… but it is so hard to get buy in from other folks.

I struggle with that.

But it may have been that I had an unscheduled visit to my oncologist today. 

Bleeding.

Something I am not supposed to be doing at this point.

So I went in and saw my doctors nurse practitioner. Who performed a biopsy. 

I have had biopsies before, in that area…  it hurt like a motherf*&%#r. 

Even though she told me that it was my job to assume it was due to scar tissue, she also told me it was her job to rule out recurrence. She reassured me that it looked like granulation (BTW – don’t Google it).

What makes this situation even crazier is that the woman who did my biopsy is also a woman who will be on the panel for the movie screening.

Following up that I am helping to host a conversation about a preventable cancer

and that one of the panelists will have seen my girly-bits, I just got word who a second panelist will be and…. guess what??????

She has seen my girly bits too.

She was there when my son was born, as in the room… standing right between my husband and my mother.


So, I am trying to find the beauty of all of this. So, “this” being a weird place in my life (waiting for biopsy results) the week before I am helping host an event. The event which happens to be about something that most likely got me into the biopsy situation in the first place.

Anyway, the big shift for me has been to try and be kinder, gentler, more gracious… and yet stay my own person.

Hard to do when you are in a lot of pain.

I lay there waiting for the biopsy, pretending to be under a fancy kitchen heat lamp

The biopsy was really painful, it still hurts as I type this some 12 hours later.

I still have so much to be grateful for, But it is kind of nerve wracking to be in my position, again… you know, waiting for results. Not the most fun place to be.

Anyway, after my ridiculously painful “procedure” I yelled out “fuck, that hurts” and immediately apologized and lay on the exam table, in tears, for a while. The nurse practitioner who took the biopsy was so very kind and seemed very distressed by my reaction.

I was pretty shocked by it too. It was, however, really painful. I have had biopsies of my girly bits before, without any numbing agent, and it was nothing like this.

At one point, during the second “grab” for tissue I screamed out “oh fuck that hurts”, and then immediately apologized. I am generally not one to curse much… I was embarrassed.

I lay on that exam table, tears streaming down my face, trying to get back to a normal breathing, staring at the bright light above me wishing there was something like a rainbow pooping unicorn to look at…

The nurse practitioner held my hand, asked me how I was feeling, helped me get some of my ibuprofen and drink it down. She seemed very concerned. All very kind considering that she had just learned she would be speaking at the HPV movie thing and that I was involved.

After my breathing got back to normal and the tears stopped falling down my face, she told me to lay there as long as I needed. She, and the other NP with her, quietly left the room. I lay on that exam table, and the tears came back.

It was a pity party I suppose. I lay there crying and trying to remember to be thankful that this was an experience in which I had had tremendous luck. No chemo. No radiation. a tumor the size of a grain of salt.

I lay there looking at the light above me. Trying to make it something more than just a light, making a distraction from the pain in my internal surgical site and the pain in my heart.

My heart did hurt, I had a vaccine preventable disease.

Let me say that again, I was diagnosed with a vaccine preventable disease.

One that would have prevented everything, a sub-total hysterectomy, worry, agony… and today’s darn biopsy.

It is a vaccine preventable disease.

Granted, I was born before this miracle vaccine was developed. But it is a vaccine preventable disease.

And as I ran through a list of people I do not particularly care for, not one of them and not one of their children were eligible for my wanting them to suffer what I had suffered through, I AM suffering through.

Vaccinate your children. In some cases yourself. Your boys. Your girls. This alternative is not fun. not fun at all. The HPV vaccine is good for kids aged 9 to adults aged 26.

It is a vaccine preventable disease.

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