Tag Archives: blair

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.

.

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.

SomSome 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 clear that the stigma is there.

After all, it forces us to have a conversation about S-E-X.

Because, that is culturally 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.  I watched my friend talk about her experience. The others at the table leapt at the chance to blame it on her husband at the time, as he had been older, more experienced.  I was pretty horrified by this in a way because you could tell the others really liked her and  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 still judge men and women who choose to move outside the boundaries of long-term, 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.

A

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.

Invincible summers and calculated acts of kindness

“My dear,
In the midst of hate, I found there was, within me, an invincible love.
In the midst of tears, I found there was, within me, an invincible smile.
In the midst of chaos, I found there was, within me, an invincible calm.
I realized, through it all, that…
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.

~ Albert Camus


It was late on December 20th, 2014 and I was still recovering from my surgery.   I read an email from my friend Gail in which she asked if the Junior League of Phoenix (JLP) would be interested in hosting a movie screening. Gail works at The Arizona Partnership for Immunization.


It was this movie screening:



I watched the trailer.

I called her to talk on the phone.

I pretty much told her that I didn’t know but I would find a way.  We talked about how I could manage this in my capacity as the member training committee chair and we came up with a plan. The next morning I sent out some emails to my Team Leader in the Junior League and my co-chair. Both were supportive.  Gail and I discussed venues and what options we had. We decided that my cousin, who is Lead pastor at Scottsdale First Church of the Nazarene, would be a good person to approach. So an email went to him. I received immediate replies and all were supportive. 

Here I am 2 months later. The JLP team lead I serve under, has allowed for this to become a bigger deal within the JLP.  More partnerships have developed and are included below.

Our goal is to provide one large movie screening with a panel that is targeting about 200 viewers. 

If you are local – please save the date:

Date:
Thursday, April 9th 2015

Location:
Scottsdale First Church of the Nazarene
2340 N Hayden Rd, Scottsdale, AZ 85257

Time:
 5:30 – 9:00 pm / Movie starts at approx 6:30

Tentative Agenda:
Sign in opens with a meet and greet: 5:30
Movie and topic is introduced and screened 6:30 
(movie is 80 minutes long)
Panel discussion at end of film
closing meet and greet


Community Partners:

Lent – and COAK (aka Calculated Acts Of Kindness)

It feels like a new beginning and how wonderful that this feeling coincides with the first day of Lent.

So, I am following after Kelli, from over at AfricanKelli, with a commitment to Calculated Acts of Kindness… (COAK)

I will post updates on:

Flickr Pool

Instagram

Facebook

and of course HERE (and on my other site)!!!!

What a wonderful way to start the season…

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?

It was smaller than a mustard seed and “How ya doin’?”

“How are you doing?”

I get asked this a lot. I mean a lot more than usual, 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.

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.

I 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

The friction of being

I came across this quote today:

“In effect, the cost of being who you are is that you can’t possibly meet everyone’s expectations, and so, there will inevitably, be external conflict to deal with- the friction of being visible.” 

~Mark Nepo

The opposite, the friction of being invisible, is that you are unable to meet you own expectations and thus there is great internal conflict.

I don’t know that one way is better of the other, it is a balance of the two, the totality of the friction of being.

Last night I was part of a panel of speakers for a women’s membership organization that I belong to.  The group is struggling with member retention and one of the areas they are focusing on is creating a culture of acceptance.

Acceptance is an interesting word to use, though a good one.

Acceptance does not mean that I freely love and enjoy all that passes my path. It is more like a time to observe. Not everything will make me happy. And I will need to be allowed my opinion. And acceptance means that I have to work at not letting it bother me.

Oh would that that be easy. I can still list of things that are the actions of others had a direct affect on me and for which I am still not happy. I have accepted the situations. I am dealing with them as such, but acceptance also means navigating the complexities of the “friction of being”.

I am choosing, for example, not to speak to my aunt right now. It is for a variety of reasons, springing from her and her husbands choice to not have interaction with my brother, coupled with her saying that she will not acknowledge that my cancer diagnosis was the result of HPV and will instead tell everyone that it was because I am a DES daughter. To me, her choice speaks of being ashamed of my diagnosis, after all it has been called the whore cancer. Add to this the fact that she was insulted that I did not thank her enough in a blog post and cried to my mother who proceeded to lecture me via phone, email and text about how insensitive I had been.

I still speak to my mother, but the conversations are related solely to my son as she is his grandmother and I will not interfere with that relationship. I answer her when she brings up the fact that I am choosing not to speak to my aunt right now, but my mother calls me hateful.

Actually, it is about choosing gentleness.

I can’t be ashamed of my diagnosis and anyone that puts me there can’t be in my circle right now. I still cry when I think about the whole thing; the diagnosis, my surgery, the good, the bad, the gentle, the insensitive, the whole mess.

I can’t be around people who flutter about in their own narcissism.

I suppose, though, that it could be argued that I am in a bout of fluttering about in my own pool of narcissism… but in that respect who isn’t.

I see this more about choosing things that lift me up, rather than bring me down. I am still choosing gentleness in this who friction of being.

trolling and menopause

As I have been pondering my move over here…

I have been thinking about how I have heard my mother and aunt say that because they are over a certain age, post menopausal,  they are entitled to speak their mind freely and as they want. Frankly, at this point, I think this makes them out to be more like trolls (definition here) than adventuresome women who are fearless.

I recall I time when I heard them say this and thought it was so wonderful, that they were fearless. But does age really allow us to be rude?

I don’t think rude is ever good.

I actually think it, this tendency to speak ones mind freely and without censure,  is more about the anonymous public thing…  when you don’t have a sensory interaction with another person, it is as if you have a license to be a rude asshole. I have seen it in a few different places. With other people. In general, I don’t like internet assholes… and it takes a special talent to interact on the internet without coming off that way, I can only name a few active “online” friends who can usually manage it with a modicum of grace, most others are just rude assholes.

There is enough bullying going around.

Notice how when you see a face, or hear a voice… that you often have a deeper understanding of the situation and I would guess that we are kinder and gentler in those circumstances.

Journalists, of course, suffer this consequence… being a silent voice to challenge and stimulate conversation Journalism is certainly not for the faint of heart in this. But I have never thought of bloggers as journalists. I tend to think of them as people willing to expose a part of themselves. In my case, I started my blog so I could document my pregnancy. I found tremendous support through my friends who read it, but the strangers who came across it were kind and gentle with me. I developed several friendships with people I had never met. They are different kinds of friendships than the people I know if life. But they were deep enough to get invited to funerals, to foster connections, to grieve together via email. It was kind. It was gentle.

I myself have engaged in an ungraceful manner on-line. I usually realize it and apologize… and have tried really hard to be mindful that we have enough horrid in our daily lives that something kinder and gentler is probably more productive.

There is even a news piece about how to deal with anti-vaxxers saying that putting them on the defensive may cause more harm than good.  And what happened when this writer met her cruelest troll.

I think people are feeling disconnected.

I just see how ugly and horrid things like politics has become – in the case of politics both sides using horrible terms to refer to the other side, names for the president that are shocking (at least to me), names for our female politicians that are misogynistic at best… I recognize that this is not new, but it is more vulgarly inflammatory now.

Then there are what I traditionally avoid when reading news stories… the comments section. Often full of hate and vitriol, scathing off the cuff accusations against the author or subject… its a little much.

As I age, I am finding it mandatory that I be more gracious and kind. That I invite into my life (and by default my family) something kinder and gentler. That I find a way to shift the ugliness of character in myself, that I allow my exposure to grace to be the driving force. Age is not allowing me to tell people to fuck off, it is not allowing me to be mean, it is not allowing me to speak my mind with freedom.  It is calling me to be quieter. It is calling me to be gentler. It is calling me to use a phone or move to be in person when I have a concern or opinion.

I know that we all need to face ugly and deal with criticism and hear unseemly things, but there is just so much. And as I sit here, managing life after a cancer diagnosis (which shifted my way of thinking) I want to commit to gentleness. I want to commit to kindness. I want to avoid trolling.