Tag Archives: death

If it quacks like a duck… it must be stunned

Today, during what was originally supposed to be a quick glance through my Facebook feed I read the words “IN WOMEN WITH PERSISTENT CERVICAL CANCER”.

It was in all caps too. PERSISTENT CERVICAL CANCER.

fuck

the urge to cry from worry

fuck

I stared at my screen thinking; Is this a thing? Can women get cervical cancer… on repeat…

My joints started to ache, my skin flushed with needle pricks, my face got hot, I held my breath.

Is this really a thing?

How did I miss this… I mean, I am a medical school dropout for chrissake… one who has worked or volunteered in breast and cervical cancer issues for most of her adult life…

In my head, in that stunned moment after reading that, I had the idea that some women just kept getting cervical cancer… like one gets a cold… they are both viruses, after all.

So, I (somewhat reluctantly, yet with incredible haste) went to my very trusted medical internet sites to see if there was such a thing (complete with a search for an applicable ICD9 code) as Persistent Cervical Cancer.

OK.

deep breath

the urge to cry from relief

Turns out, it is another way of saying metastatic cervical cancer, and just as I had thought before I had read that post cervical cancer recurrence rates (really, it is 5 year survivor rates) are linked to stage of initial diagnosis.

fuck

I wonder if my conversation with a person (a woman who had also had a cancer diagnosis, though of a different variety) just minutes before seeing this, where we talked about how certain things just tend to have an initial thought that you have a recurrence, played into how I reacted (what a sentence this is?!).

Your tooth hurts  – it has spread.

You get a bruise – it has spread.

You have an ache – it is a tumor.

but… maybe not.

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This is going to be hard, and it was (day 3)

Today I gird my loins (ironic, huh?) through  step three of the suggestions this article has for addressing the negative:

3. Next, identify the specific emotions that arise in you as a result of said thoughts. What do they feel like? Is there tightening in your chest? Is your stomach turning or is there a throbbing sensation in your head? Again, any emotion that causes dis-ease is applicable.

[deep breath]

Well, this is going to be hard.

I will start with the easier one for me to discuss, the shame. The  shame is like a flush, it is deep and internal. I feel it come from my heart, and it rises into my throat. It weighs heavily in my brain.  I met, one night, with a friend who is my mentor, she was trying to find women in the Mormon community that would be a word of mouth conduit for encouraging immunization, specifically the HPV vaccine. I invited a Mormon friend to join us.  My friend shared that she had had cervical cancer, and explained that her marriage was to a much older man. The three Mormon women at the table with us, one of whom was a physician,  all nodded their heads in agreement… as if to say, of course, he was an older man and obviously slept with someone else. I was dumbstruck that they all went that route, especially the physician. I was so perturbed by that, that I said that I am a survivor too. They all looked a bit perplexed… they were presented with a situation that they could not discount by blaming the older husband… there was a strange silence. That silence was so full of judgement. I can excuse all of them but the physician, she really should have known better (even if she was a Mormon). I remember watching them around the table, after I shared my cervical cancer status, they all cast their eyes away… I was tempted to mention that I was a DES daughter to help them ease whatever it was they were thinking… but I felt that women who were in that position needed to manage their own thoughts about the disease. I felt shame in that instant, and it was coupled with being judged.

On, being judged. In the early 90’s I worked with my mother on a breast and cervical cancer program in our community. It was a nursing model and one that used lay health educators. I recall my mother telling me that women who had cervical cancer either had husbands that were philanderers or who were themselves “loose”. I feel like those who understand that cervical cancer is transmitted this way judge me. I want to start screaming my sexual history (which is really no ones business other than mine). The judgement plays itself out similar to the shame, but it filled with some indignation. I need to want to explain but with a sense that I really should not have to. I feel this in my stomach,  I get a horrid stomach ache when I feel judged.

There is a related story in which I would say I felt grace. Six months after my surgery I helped host an event to educate people about HPV and the HPV vaccine. One of the other community partners invited a male survivor. He had an HPV related cancer in his throat. During the social hour before the actual event, I talked to him. He told me he was a survivor, and I looked at him and said “So, am I”. We stared in each others eyes. It was as if we had found a kindred spirit. There was a brief moment of silence. And he then whispered at me, “So, you understand”. I felt grace in that moment. I was spiritually lifted in a way  I hadn’t’ been for the 10 months prior. I am so grateful I had that moment.

In terms of the betrayal. I think the hardest think one has to go through might be learning how fallible ones parents are.  The anger I feel at my mom and my aunt is fierce and fiery. When I think about how many times my mother felt that she needed to tell me that I needed to be more grateful to my aunt, to understand that she is awful about being nurturing that for her it was a tremendous success. I feel a heat start in my chest. I feel angry that my mother failed to see that I had recognized that, that my aunt felt that somehow she had gone above and beyond the group of friends and stranger that had organized dinners to be delivered to my home. Really, it was on par. I had thanked her as much as I had thanked them, the only thing being that I realized that taking a dinner to family you don’t really know was a generous act. The underlying thought is that if someone you do know is ill, you actually do, in fact, offer to help. After the burning fire of anger and sense of betrayal form in my chest, it moves to my jaw where I begin to clench my teeth as if I am trying to stop myself from yelling.

These usually all come together at the same time, starting with any one, will lead to the others. It feels like a vicious circle. I also feel like I need to get closure.  Often when they all come together, I wish for a state of non-being. I do not mean in any way that I want to kill myself, but it is more like wishing that I were not sentient, that I were not here, that I had never been. I hate it when I get to this point, thankfully it is not all that frequent that I get that bad.

My mother has apologized to me (I did demand it), though I got the distinct impression she has no idea what for.

Action:

I was at a leadership retreat recently where we did an exercise in which we had to picture us as an 8 or 9 year old. We were to talk to her about how wonderful she was, because it is easier to do that than to tell ourselves. It is much easier and carries a much deeper felt reaction to do this exercise.

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Blair, you are an amazingly little girl. You live boldly, you love boldly. You have only made human mistakes, and you should not be ashamed of anything that happens to you because of them. You have an amazingly wonderful gift of learning from your mistakes, quickly and deeply. I see you striving so hard to be a good person, that is a good thing, because it means you are.

You willed always be judged, it is an unfair circumstance that we live in a world where people love to cast judgement. So, remember that you don’t need to do that for them. Go to your tendency to look at yourself, learn from it deeply and honestly as you often do. Move on, don’t let that dampen your spirit. No matter what other may say or think, you are a nice person, you always will be.

People will betray you. It is sad. They will betray you in so many ways. They will leave you without rhyme or reason, they will use sacred confidences and toss them out without thought to any consequences other than their right to do so. They will hurt you physically and emotionally. Don’t let them take away your view that the world is still glorious, that mean-ness and cruelty are the exception not the rule. Don’t let them belittle that you believe there is more good in the world than things dark and sordid.

What a difference a year makes

In 27 days I will celebrate one year of remission.

Today, I reflect on one year since I got the telephone call.

At 8:58 AM my doctor left a message that did not pop up on my phone for  at least another 20 minutes.

I was at work, and my office is in a cellular black hole. I was unable to listen to the message through my phone. I had to call my voicemail from a land line. I learned that I had cancer via voice mail.

I’ve left the voicemail unheard, like this, since, that day.

I remember looking at my desk, that space between my keyboard and the edge, staring at the wood as I listened. He gave me the pathology report results, and then gave me some names and numbers of oncologists to call, and of course asked me to call him back if I wanted.

I remember taking a very deep breath. I had a moment of overwhelming helplessness. Didn’t know what I should do first. I didn’t want to call my husband or my family. I tried to think of a way to get through this without telling anyone. I realized that was going to be impossible. I decided to take care of business. I think this all happened in 16 seconds. I called and made an appointment with the first oncologist he had recommended and then called my doctor back.

So began something I had not signed up for.

Looking back, I can honestly tell you that in so many way this has been the darkest year of my life.

I try to hang on to those moments that gave me moments of brightness, but it’s some of the hardest most desperate hanging on I’ve ever done…

Especially during those times when recurrence, in spite of a “98%” survival rate (which is the same as any of us pretty much) becomes that focus on the knowledge that I am on that low end of that 98%  spectrum and a swirling mess begins. I wish I could invoke my husbands Austrian pragmatism and just eschew that as silliness.

Actually, there is a part of me that can. What ends up happening is that I have conflict.

So, since I have dedicated October to mindfulness I want to explore how I can manage this conflict. I hate feeling the way I’ve felt this past year.  This article gives some clear steps on how to do that:

  1. Whenever you become aware of negative thoughts and emotions arising, rather than ignoring them, or setting them aside for later, identify, acknowledge, and honor them.

Identify: As a result of my cancer diagnosis; I am scared. I am angry. I am sad. I feel lonely. I feel ugly. I feel unloved. I worry that it will come back, every little pain or ache can bring that worry to mind. I feel unworthy. I feel like crying. I feel tired.  I feel selfish for being so sad and upset about these emotions. I feel let down. I feel like family is a joke. I am heartbroken that my mother chose to defend my aunt and berate me just a few months after my surgery when I was trying to find the good things in this. I’m angry that my aunt was a crybaby about my not thanking her enough. I feel like friends can bring greater value in times of stress (and this haunts me). I feel weak. I feel like a failure. I feel judged. I feel helpless. I feel like something I considered vital was beat out of me by this cancer, and by those I love. I am heartbroken to realize I no longer think I’m a kind person.  I miss the pre-cancer me.

Acknowledge: I clearly can see that these are all related to my diagnosis and experiences relating to all that has happened to me in the past year.

Honor: I have tried to do this, this is where I am stuck.

This past weekend I was at a leadership retreat where we did an exercise in which we had to picture us as an 8 or 9 year old.


I was told to picture that little girl in front of me. And tell her that I loved her. That she was bright, and kind, generous, and beautiful… loved. I was to caress her cheek, and hug her. I was to tell her she was valuable, important, strong, and brave.


2. Become very clear on what the specific upset is by identifying the exact thoughts that are bothering you. Are they self-judging, bad memories, or anxiety about future events? Any thought that causes dis-ease in you, regardless of past, present or future is applicable.
3. Next, indentify the specific emotions that arise in you as a result of said thoughts. What do they feel like? Is there tightening in your chest? Is your stomach turning or is there a throbbing sensation in your head? Again, any emotion that causes dis-ease is applicable.

4. Once you’ve clearly identified the thought(s) and emotion(s), close your eyes and explore the imagery they subsequently create in your mind (once you’re familiar with the practice, you won’t always need to close your eyes—i.e., if you’re driving, or in public you can still do this.) Do the thoughts and emotions create colors, shapes, figures? Are they abstract or clear? The important thing is to let your thoughts and emotions create the imagery while you simply become aware of what they are.

5. Breathe. We’re at the half way mark and I’d like to offer you a sincere congratulations on completing the first half! Our natural tendency is to suppress these uncomfortable thoughts and emotions, often telling ourselves that we’ll deal with them later—but honestly, does later ever come? Unfortunately for most of us, it never does. So even just by taking the time to become conscious of, and identify these unpleasant thoughts and emotions is a huge step! Let’s not stop there however, because here’s where the really good stuff starts to happen.

6. This step is where everything begins to change! Once you have the mental images of what your thoughts and emotions look like (and even if there’s no image at all, this practice still works), picture yourself holding the image (or lack thereof) in the same way a mother holds a newborn baby. Picture the image of your painful thought and emotion wrapped in a warm blanket, being held with very loving care closely to your heart, your chest, as you extend it very sincere compassion from your heart center. (You can also use the imagery of wrapping the thought/emotion in a warm blanket and placing it in a baby carriage, and rocking the carriage back and forth.)

7. Next, mentally (or verbally) say to the image that you know it’s there and you promise to care for and hold it with compassion until it’s ready to go. Do your best to say these words from a very sincere place in your heart.

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…

##

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.

##

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.

.

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!

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:

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.