Tag Archives: life

a flash of lightning in a clouded evening sky

“Hers is a timeless life weaving through other longer lives like a flash of lightning in a clouded evening sky.”
~ Beatriz Fitzgerald Fernandez, Shining from a Different Firmament

I think that the hardest part of this is trying to stay in a good mood, up-beat, positive. I am a period of waiting and it is just too much time for me. I miss the good ol’ days of daily appointments meeting, doing new things, meeting new people, taking new tests. i was exhausted during that phase of this – but things are settling, and people are on vacation, and I can’t seem to speed up time to get this crap experience behind me.

https://www.museodelprado.es/en/the-collection/art-work/women-gladiators/ee076233-5858-4a35-a5c0-9ce631cd5382
Women Gladiators by Jusepe de Ribera [Public domain], via Wikimedia Commons
People keep calling this cancer experience a battle, a fight, a difficulty… blah, blah, blah. I hate those words, and you can throw in journey in to the mix.

The truth is, that there is a certain call to gird up one’s loins in this stupid “experience”.  I mean there is prepping oneself for a cold and then there is cancer.

The other side is that in spite of the certain enlightenment we have in the western world about disease, cancer is still pretty weird.  I could share horror stories with you of a few of my dear, beautiful, well-meaning friends saying crazy shit to me about my new-fangled diagnosis – there are still people out there that think a radical mastectomy is the way to cure this beast and further they feel it is OK to imply that if I choose otherwise would be tantamount to saying I don’t want to try to stay alive for the sake of my son – how incredibly fucked up is that?  For the record, I think they have a brain injury, I tried to be patient.

Then there are those who are convinced that injecting THC into my boob will make it all go away. Bless them, but its exhausting because they love me and will argue with me about its advantages. I don’t for one second believe that doing this will cure me of cancer, it might well be part of the process but it isn’t the only one.

Maybe the weird part is that in spite of being the one with cancer, I am still forced to care for those that love me enough to talk to me about their opinions (none of these are medical peeps, they have a different level of communication about this with me).

I have a friend that is a nurse that is coming with me to most of my appointments and who checks in on me and for all the love in the world, isn’t trying to write my narrative of this experience. She knows, for example,  that I hope to avoid having a port if possible, so can advocate for me if I need it, but also knows that if it isn’t something I should avoid that she can walk with me in those facts.

Words matter, in spite of an all-encompassing need for the individual to throw out mental garbage via vocabulary – they matter –

I am not say that cussing like a sailor is bad, I love my salty friends, they keep it real for me.

I am not saying you have to temper each comment before you utter it, some of the greatest shit I have ever heard can come from those who have a tendency to insert their foot in their mouth.

I think I am talking about the need to talk for the sake of fucking talking, which is a luxury that should be rarely offered up.

Life is hard enough without verbal lashings for the sake of;

  • talking
  • sounding authoritative
  • funny
  • elitist
  • or what the fuck have you.

But what distinguishes talking like I refer above and talking – as in the real deal?

I think, and mind you this is my own thoughts, and this is a journal, not some expert piece of advice for the masses – this is me thinking out in type.

So, I think that a skill that is lost is that talking (the real ind)  is about the relationship between two or more people trying to communicate ideas to each other.  I don’t know if in our digital age that we can recognize this, mainly because we might be too busy trying to show someone we love them by sharing a silly buzzfeed video.

I do have people, though, that are cheking in on me – sending cards and the best emails and texts. they are so wonderful and when I get their notes I am humbled and am able to refocus on the gift of them in my life.

Like the one that sent me this for Independence Day:

Our rebel Pope (I say rebel because he is a Jesuit and they are apparently considered barely  Roman Catholic) said this:

“To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
~ Pope Francis

That quote was about a baby in the UK, I think – but there is something there that touches on what I am saying and you don’t have to be pro-choice/life/retrograde-abortion to try to appreciate it.

It brings back the experience I had when I dealt with cervical cancer and having people wanting to overwrite my narrative with the narrative of others – that should never have happened (I am still a little bitter). This is my story, I get to tell it.

In person, to someones face, I tell it very differently. On here, it is very raw, unfiltered, ever-changing, fierce, and scared-shitless, full of shit grammar and spelling.

My sister posted this song today on her social media, so as part of my quote/picture/song – I post it here (I miss her and my baby brother, they are my half siblets and live too far away).

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QEPD – Saracita

I was sitting on a short wall that was facing a Japanese pagoda house  set upon a pond on the campus of my University in Ecuador.  The waft of acrid smoke from the Belmont cigarette curling around my head. I was horribly homesick, and slightly uncomfortable with my leg stretched out in front of me heavy with my hiking boots. My leg was sore from falling off of a moving bus, and I was thinking I was grateful I had access to healthcare through my schooling, which was to say my fellow medical students.

In the midst of this pity party this sweet perky girl sat down next to me and in halted spanish, asked for a cigarette. I handed her one and my lighter and we struck up a conversation.  She eventually asked me if I was Brazilian… and I started laughing. I was delighted to finally be considered to be from somewhere closer to the country in which I was born. I turned to her and began the long explanation that usually accompanies this kind of question.

I had met a dear, dear friend. We spent quite a bit of time together, laughing about our respective “viejo verdes” and other assorted scholastic  adventures.  We would sit in our college cafeteria eating french fries dipped in a sweet mix of mayo and ketchup telling stories about our lives. I was in medical school and she was doing a research project on homosexuality in Ecuador and we had access to a plethora of surveys given to our fellow alumni about their sexual attitudes, beliefs and practices as a part of her project.  Analyzing that data was fun and a part of our shared love of things anthropological.  We traveled together and developed a sound track to our friendship. I loved hearing about her friends and family back east.

We would dish on our favorite professors; the plastic surgeon turned medical anthropologist from Colombia, the Jewish philosophy professor that  specialized in the German thinkers, the nutrition professor that shared our love for anthropology. She helped me manage a friend (acquaintance really) that came to visit me out of the blue. I helped her realize the hearts of palm farmer was a poor love interest. We both loved, we both cried, we both laughed.

It was the first time I had a girl friend that shared a similar intellectual curiosity. Sarah was also incredibly girly, and it was a welcome change for me… to have a girly friend that let me be me. She was about ten years younger than I was, so I was able to live vicariously through her. I am filled with fond memories of her.

Sarah and I stayed friends from that day she sat down next to me and I am ever so grateful for her presence in my life. When she died this past October, I was devastated.  I wasn’t done being her friend yet, at least in the kind that involves voices and hugs and contact, I still am not.  I miss her emails, I miss her phone calls, I miss her writing.

She was a wonderful writer, she had a clean way with words that was always a pleasure to read, even if the topic was outside the scope of my  interests.

I miss Saracita so much.

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Sleep, Pretty baby, Do not cry, And I will sing a lullaby. (day 6)

I now get to step six of the suggestions this article has for addressing the negative:

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.)

It is interesting to get to this point and realize that in some way, I have been doing this when I talk to little girl Blair at the end of each exercise leading up to this one. I don’t know what I should do other than what it says. I will start by saying that it is awkward to picture myself rocking a lava-lamp like image like I did my own baby. I am not attached to it, I don’t particularly like this image-child. But I am guessing the intent is to see these emotions as something that come from a need for love. So, I am picturing myself trying to love it. It feels much like the way I came to love the color orange.

orange

Growing up in South America my friends and I often talked about how much we loved one color over another, but it never occurred to me to hate a color… at least until I moved to the USA. In “America” stating one favorite color was often a conversation that included what colors we did not like… and I recall sitting in my classroom, with girls proclaiming a love for pink or red or purple and boys loving blue or green… While this gender division for color preference was a bit of a surprise was the number of child who emphatically stated a dislike for yellow, and a hatred for orange.  I was so taken aback as one child after the other made these proclamations, and as someone who loved all color having to pick one, and not knowing which… but seeing how much people disliked orange aroused something in me, something that felt sorry that it was so disliked and when my turn came, I proclaimed my love for orange. I don’t recall what I said for the color I disliked, I probably said I did not dislike any color.   I embraced orange, which took some getting used to, after all I really did not have a favorite… but tried it on, as they might say, as my favorite. So here I am over 35 years later fully loving of that magnificent color orange.

So, I am trying to love this image of my feelings in a similar way.  It feels awkward, but manageable.

Action – reflection:

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.

IMG_7461                 E62EDBED-16E4-46FD-B424-D4875F8D33E9

Little girl Blair, love as fiercely as you have since you were a baby, and keep doing it for the rest of your life. It will serve you well.

 

I do not crave Squirrel Poop!

I crave PEANUT BUTTER!!!!!!!!!

For the past 5 weeks I have consumed at least 10 jars of peanut butter. At least 10 JARS! This is crazy.

It is like one of those insane cravings that can’t be sated. It has to be smooth – or as they say in peanut butter parlance – “creamy”.

Yes, I tried to curb the insatiable craving by buying a jar of the crunchy (or chunky) stuff. It merely slowed down the intake, but not enough to think it was effective. It was actually a catalyst for a dangerous turn in this craving period. I had to eat it with chocolate. Yummy combo yes, but not when you are a super dark dark chocolate lover and find that combination is heinous….so you run out and buy some crappy milk chocolate to make it palatable. And even if you return to the no sugar added creamy peanut butter your love, the taste for hints of milk chocolate remains.  So, I elevated the experience buy snagging some of  my son’s Lindt’s.

Only to find the creaminess of their center the absolutely perfect complement to the spoonfuls of peanut butter that I have been shoveling ion my mouth. It was heaven, though there is a lot more guilt from digging in to my son’s stash of favorite chocolates.

Creamy peanut butter, it is really awesome.

“Who uses crunchy peanut butter?” he asked the room. “You might as well eat squirrel shit.”
~ Michael Thomas Ford, The Road Home

I am not sure about the source of the craving, but the all-knowing Google gave me the impression that this is not an isolated thing, that there are many people out there with a hankerin’ for the thing I most currently consider a nectar of the gods.

There is a possibility that I am in desperate need of something that my body has been missing, much like the fierce beef carnivore I would become back in the days when I actually got my period. The interesting thing now, since I don’t get a bloody period, but do get a hormonal one is that I still crave beef, just not with as fierce a drive.

Ewww, gross.

Let us get back to peanut butter.  Creamy peanut butter!!!

It is insane, I am carrying around jars of peanut butter with me, I make runs to the grocery store when I polish a jar off. I have bought big jars, and normal jars. I eat it straight out of the jar.

My husband must think I am crazy, but even he has helped me give in to this madness by running to the store late at night to help keep me in stock.

It has to be plain or chocolate, no bread, no jelly… just peanut butter. and lately some chocolate is nice (but not required). Preferably off a spoon, but a knife or fork will do.

At least one site says that it helps fight stress. Maybe so. It makes sense, the past year has been stressful in a novel way. If peanut butter saves me through it, it is indeed the fruit of the gods… and gloriously explains my 30 pound weight gain.

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)

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!

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: