Category Archives: thoughts

the glint of light on broken glass

The other day I received an award for being positive in the face of adversity. I essentially got an award for getting cancer – though it is more specifically about how I chose to handle it.

Costumes, wearing costumes did it!

Having cancer three times in under five years is pretty messed up, but it is a part of my story.
Thank goodness it is just a part – but while living in it, it seems so all encompassing – like it has always been a part of my story.

8662424109_f2bec79f52_z
Source: https://www.flickr.com/photos/francescaromanacorreale/8662424109

 

“Don’t tell me the moon is shining; show me the glint of light on broken glass.”
― Anton Chekhov

 

After I accepted the award a few people asked me how I could be so funny in such a dark time – my response is that I did not have a choice.

That is not to say that I don’t have dark moments, where I picture my son at my funeral not at some time in the distant future but rather now – in his early teens with a thin shadow of facial hair waiting to make it s entrance on his handsome face. Those are dark moments, they are filled with an internal scream so howling and loud that it hurts my body with a pure sense of pain. I hate those moments, but they happen, and they are hard to move away from – but I have to.

Usually I am able to stave off feelings about my  impending demise by imagining holding my grandchildren, touching their tiny little bodies with a wonder that only a grandmother could have. These thoughts power me, they give me something strong and important to keep my body and its insanities in a place of hope and wonder.

But every night when I take my chemotherapy pill, it all visits me again  as I wrap the pill up in a marshmallow (to prevent mouth-sores)  trying to make it swallowable… I am almost halfway through this process – so many long months are ahead of me with this. I see my oncologist monthly. Filling my head with questions I need to ask, symptoms I need to report.

I am looking forward to a time when I feel more compelled to write about watching my oncologist play the piano so beautifully that I was moved to tears while I surreptitiously recorded his playing. He played a collection of Russian composed songs – and Beethoven’s 5th. I feel an affinity to Beethoven, he lost his hearing – something so vital to what he loved to do. While I lost my breasts and my womb, and being a woman was something I love to do.

But the glint of light on my broken glass is that my breasts and my womb are not me – just like Ludwig Van was not his hearing. They are a reflection of our capabilities, one of the shards of broken glass – but never the whole.

 

 

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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;

https://embed-ssl.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html


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)

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

“How are you doing?”

I get asked this a lot. I mean a lot more than usual, a lot, a lot. I imagine it is the result of their knowing I was diagnosed with cancer, and with a subsequent surgery.
It is an even more complex question to answer now.
The nuances of recovery from my surgery are interesting.
On one level, I am so incredibly lucky that it is a true cause of celebration. I wonder how rare it is to get a cancer when it is under 1 mm.
In one study that I read about cervical cancer, the data regarding the tumor sizes (not direct to the study, but the data was presented) said the mean size was 2cm and the median was 1.8 cm (of the tumors in the study).
I was at 0.8 MILLIMETERS
a grain of salt.
       a grain of salt, on a pinhead.

Smaller than a mustard seed.
The average size (from that one study) is like a marble, or a quarter, or a stamp.
A stamp, rather enlarged
I am so insanely lucky. However, my cells had made the crossover from being atypical to being cancer. The cells in question had moved from being In Situ to being nefarious (micro-invasive was the word) things…. So I said get it out.
It was aggressive in terms of the treatment I chose. I didn’t, however, want to revisit this conversation of “You have cancer” again. At least not for this.
So, the surgery for a grain of salt included my  the removal of entire uterus, through a long abdominal incision. It included the removal of my Fallopian tubes, sixteen lymph nodes, and some tissue that surrounded my uterus.
For something the size of a grain of salt.
The surgery was traumatic. My body does not feel normal, though it feels like it should feel normal. No visible parts are missing, but there is the scar that travels along my lower abdomen.
My girly bits and stomach are numb. My scar itches. There is a heaviness where I image the lymph nodes were. Cold causes a strange ache. I get exhausted easily and try to balance everything.  There is something I will refer to as exudate. My stitches have yet to dissolve. I don’t feel good in the sense that I feel limber and mobile. My abdomen feels  tight and yet wobbly.
Source: http://en.wikipedia.org/wiki/Daniel_Johnston
This post originally appeared elsewhere.

find the beautiful 5

I am kicking and screaming

I am angry

I lash out

I don’t know where else this could be coming from

damn cancer

and so, to try to slay this angry beast, I looked round me trying to find something beautiful.

here is what I have…

there is a certain kind of light that I have only ever witnessed here in the desert

it comes at sunset, in winter

it is a light that makes our mountains purple instead of brown

that seems to bear a reflective quality like that of burnished gold.

that was the beautiful I saw today

and here is a terrible picture of it…

“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.”   

~ Rabindranath Tagore

update – the last 4 weeks have been interesting

So, what an experience these last few weeks have been.

The surgery went abut as expected.  A scratched cornea in the hospital.
The final diagnosis was the best to be expected. No chemo and no radiation.
Big blessings.
I took a nose dive after I got home… lost over ten pounds in about 24 hours.  
Family took care of me. Friends feed me. I felt/feel deeply loved. 
I have been torn down in a way that has built me back up.
I am exhausted, tired and eager to get on with life.
I even drove once!

Day 18 – 40 days of writing- The long, slow, walk to the guillotine.

My paperwork is filled out.
And I sit here, today, tonight, feeling like I am awaiting an execution.
There is such an ominous feeling in knowing that tomorrow all this becomes so much more real. There are conversations I have to have…   decisions I have to make… all of which feel overwhelming to me now, even before they are completely and specifically known.
And as I contemplate them… the ones that are somewhat known, they feel so bitter.
I can’t ask “Why me?” because this is a product of life; choices that I made and that have brought me to this junction. It is futile to wonder the why, but in my most self pitying moments I wish I could scream this into the abyss… and then reason takes over and answers me gently.
Nature is so cruel. I was brought up with that in my every day life. And yet, I want to scream… “why do this to me, why take the one thing that is a symbol of being a mother and obliterate the last few years of my chances at having more children”. “I wanted six”, I want to add to my scream, and in the end I feel weighed down by this incredible failure of aspiration.
And perhaps it is this failure that makes things in this situation so damn hard, because it is just that. A failure.
I look at the exotic eyes of my beautiful son, and choke up at how much I love him and how profoundly lucky I am that he came in to my life, and feeling that the intense lamentations of the ones who were never to be born are equally lost to him.
Couple that with the idea that I should be grateful that I do have him, creates a whirlwind of emotions as intense as they are complex. 
That which I have held most sacred, motherhood, will be denied me (in this way) much earlier than I am ready for.
The rituals of this disease are subtle and fierce. My physician turned my care over to the oncologist. I do not get to return to him until I am released back… much like a prison sentence.
And so, I feel like my dinner tonight was a last meal… and tomorrow will begin the long, slow walk to my own personal guillotine.

Day 14 – 40 days of Writing – Colour

A family friend keeps crossing my mind these days.

Her name was Ilza Hahlo. She was born in Vienna in or around 1908. She grew up to be a textile designer and designed costumes and sets for the opera there. She came from, what I assume to be, an affluent family. She had access to resources many did not. As a young girl she and her sisters had some warts on their hands treated by radium, by the infamous Madame Curie herself, I was told.

Of course, it must have been so exciting to be treated by someone who was revolutionizing the world. There was no way of knowing, I am sure, what the after effects of such a procedure might be.

Ilza eventually moved to New York and tried her hand at textile design stateside. She really did make beautiful textiles.

One of Ilza’s textile designs

Somehow she ended up in Arizona, which was our luck. She was a beautiful woman when I met her. We also knew that she had cancer when she came into the family friendship fold. It is assumed that her cancer was the result from the radium exposure she had as a young girl.

I recall one time, as she and my grandmother visited each other one bright Arizona afternoon, hearing Ilza tell my grandmother that as her illness got worse, her colours got brighter as if she was trying to bring all the goodness in light in and shut the darkness and pain out,

This has been running through my mind a lot these past 13 days. There is a darkness that descends and while the pain I currently feel is the result of the last biopsy procedure, there is something else there. It has hints of so many things, despair, anger, fright… to name but a few.

Managing those emotions on a daily basis is very new to me, I have been made aware of just how happy I was/will be. What an unspeakable privilege this happiness is. It weathered through me through a serious chronic illness (valley fever that symptomatically lasted one over year) and the darkness of being on bed rest for a great amount of my pregnancy.

What is so different now. I think it may be that my own mortality is coming to rear it head in front of me. Suddenly beautiful things mean so much more;  the goofy faces my son makes as his face matures from little boy to what it is now, the bright colors sweeping across the sky of a morning sunrise.

Subtle changes in myself too. The other day I ran across a nail polish set my mother had given me with wild and bright colors as I tend to prefer for my pedicures. I pulled the light teal color bottle out from the set and painted just one finger nail with its bright pastel hue.  I can’t stand to have my nails painted, but some how this one in bright green, seems to be less of a bother. I smile when it catches my eye as my hands wave about as I talk during the day.

I also chose to wear a pair of red pumps, though I am not wearing a stitch of red clothing. I am wearing blacks and browns, but on my feet are these bright red shoes. They invoke my grandmother, as if I am asking her to guide me as I walk this new path.

So colour has taken on new meaning, bright patches of it to cross my path, much like a brightly plumed parrot stands out as one walks through the mass of greens that are everywhere under Amazonian jungle canopy.

Day 9 – 40DOW – a little conversation I want to have with men

I think the one thing that has been hardest on me is how the men in my life have handled this.

First of all, let me state this is not all the men.



My husband has been über fabulous; he has been there for me and has been a solid rock and really been wonderful and supportive and asked questions and made me feel like he is in this with me 100%.

It is the other ones.

Like My Boys   – sigh.

I mentioned the one that talked about himself after I shared the news… though he has sent a note back in which he sorta says one brief little thing and proceeds to write about himself for three or so long paragraphs (that is how he is). Another, that found out through his wife, sent a note to my husband saying that he knew. For those two, it was perfect. It fit their personalities and I am so glad. 

I did share with the other boys, and nothing. I am hoping that they might be out of town for a very long time or too shocked at the news and feel kind of helpless and not know what to say or even do. I mean there is something so very personal about talking about your lady parts with a man, I imagine it might be embarrassing or something along that fine continuum for a man to talk about a female friends girly parts in such a deeply personal way… even if you never utter the words cervix, ovaries, uterus, vagina.

The other three male friends that I have told have been able to reply. One with a sweet message and encouragement and stories of how his mother has gone through something similar. Amazingly supportive and wonderful. Another apologized about what I am going through and then turned into a lump that seems to want me to take care of him. The last proceeded to offer a bunch of medical advice based on his experience with his mother and her ovarian cancer.

I can’t imagine what it must be like for a male, to hear from a friend that her girly bits have failed her in such a dramatic way.  I am sure that saying “I am sorry that your cervix is going through that” just seem too ridiculous for a male.

So, if you are a male and you have a friend (or loved one) who has been diagnosed with a reproductive cancer (or any cancer) here is some advice based on what I have learned so far;

  • If she tells you, respond. Even if you just say: I am so sorry you are going through this. I don’t really know how to respond, but I am here if you need me. Repeat this on occasion if you are still speechless.
  • Prepare yourself, think about times when you have been scared, or ill, or going through a difficult time. What did you want to talk about? What did you need? Consider your friends personality; is she forthright or private and talk to her. 
  • Tell her you are sad that she has to go through this, acknowledge what she is going through.
  • If possible, invite her to lunch or dinner or breakfast or brunch, and listen to her if she accepts (and let her know it is ok to say no). Ask her if she needs a hug, and talk to her about things you know interest her; books, plays, etc. Reminisce the old times, make her laugh at how silly you both were when you were younger if your friendship has lasted decades. 
  • Don’t continuously pick up and stare at your phone or allow other distractions when you talk to her, especially if she is talking about what she is going through.
  • Let her know you are interested in her health, and are willing to help. If she is alone, ask if she needs help putting in light-bulbs or other small house projects. If she is married or living with someone and you know them, ask if you should take her partner out and get his mind of things. If you offer, and she accepts. Follow through. 
  • Be honest about your feelings.
  • If you have a history of doing things together, plan something she can look forward to.
  • If you have shared friends, ask if she would like you to let them know. Respect her answer.
  • Try not to offer medical advice. Don’t send her information on protocols and options don’t be upset when she makes decisions that you find odd or extreme or even not extreme enough. 
  • Most importantly, continue the friendship… knowing there is a support system out there for her is incredibly important (even if she doesn’t take you up on the offer)

I hope that I have given some pointers that are helpful. 

These are ideas based on my experience so far. I am sure that there is some variety among women who are going through this and I am sure that Google probably has far better advice available if you search. 

IMPORTANT UPDATE:  Please refrain from talking about her disease around her children. She may choose to really limit what the kid/s know during this time since it can be super scary, and needlessly so.

Being swallowed by the essence of life…

Volunteering.

It is considered on of those important things to do to lead a happy life.

I would agree, though if you are one of those who claim it is about (solely) reciprocal altruism… I would disagree. But that might be good for another post. 

I recall conversations with my mother when I was a young girl in her pre-teens. Growing up in a third world country where poverty is very much in your face, and you are most definitely on the “haves” end of things can be distressing. My mother volunteered often and I recall asking her about poverty. She counseled me by telling me that it was our duty to help those who needed our help. That has stuck with me ever since.


On Friday I attended a work related conference and was fortunate to have an organization that I work with represented at their program fair. I shared the organization with people I had met throughout the conference that had mentioned they wanted to work with a good character development program.That organization is called Release The Fear


Saturday, I got to help another organization that I belong t,o a women’s membership organization (JLP), and we do really wonderful things in the community. Squink and I spent yesterday morning helping the committee tasked with training our brand new members what things we have done in our community. Here I am at the Arizona Science Center overlooking the Rosson House Museum (both projects the League has worked with):



We followed that with another volunteering excursion by taking Squink out for his first ever fundraising effort by setting up a popcorn sales table at a local Safeway.


I was/am so proud of him! The other scouts that were supposed to show up, didn’t. Though the city was deluged with a rather amazing rainstorm (floods and downed trees kind of storm). As Squink and I drove tot he location we talked about not going, but we also talked about fulfilling our obligations and we decided that it was best to go and see what the store said.  They obviously told us to go ahead and set up.

Squink had one marvelous experience there. He met Keith. Keith was a retired photographer from the Arizona Highway department. They used to use his photographs of ruins and petroglyphs to create papier-mâché reproductions of them and how they were often featured at the sate fairgrounds. He also told Squink about his years as a door-to-door salesman in Indiana. Keith spent some time giving Squink pointers on how to be a better sales person. Keith did not have cash and we couldn’t take credit cards. So he said he would get cash back after his grocery purchases. Sadly, the rain had caused problems with the credit machines and the cash-back option was not working. When he came back, he told us that he could not do it, but that he had been planning to go out to dinner and had decided that he would now stay home and eat what he had on hand and watch a movie and use the money he was going to use to eat to buy a bag of popcorn. Keith used the scooters that the grocery store has to get around and had walked in using a cane. When Keith parked the scooter as he got ready to leave, Squink went up to him and asked if he could help him to the car. Here is a picture of the two of them walking out the door.




It was such a sweet experience, two friends (thank you Ronnie and Angie) stopped by and purchased some pop-corn too!


CUB SCOUTS

You can help him meet his goal of selling a minimum of $1500 by clicking on this link:
http://www.trails-end.com/All/b/6479672011?ie=UTF8&title=All+Products


If you are prompted to select whom you will support these are the things you need to know to make sure Squink (aka Josef S) gets credit.


Type in the council zip code of 85016

Look for the following once the scouts name field populates:


Josef S – Blair – Pack 0324 – Villa Montessori School

Make sure that you click to support Josef S – Blair – Pack 0324 – Villa Montessori School
 (you might get the option to choose the Grand Canyon Council (but Squink wont get credit)

If that is too complicated, just leave a comment or get a hold of me and let me know what you would want and I can work with you.

Now, this reminds me of a few other things that are coming up.

Biltmore Prep Hermosillo Exchange Program

Squink has decided that he wants to participate in an exchange program with a school in Hermosillo. It will be the second year this occurs and he is so excited about the opportunity. However, as a part of that he has committed to securing $1000 in tax credit donations for the program to help offset the costs related tot he program.

Here is the Facebook page for the program: https://www.facebook.com/BPAExchangeProgram

And you can contact me (again by comment or email) if you have questions or want me to email you the form in another format.


For information from the school about this tax credit go here: http://biltmore.creightonschools.org/apps/cross.jsp?wREC_ID=2676&crossPath=/apps/pages/index.jsp%3FuREC_ID%3D181276%26type%3Dd  There is a link to download it in PDF form or the link to the online donation.

The link for the on-line donation is:
https://secure.edlio.com/ssl/forms/tax_donation/english_v2/index.jsp?ech=creightonschools.edlioschool.com&cross=1

PLEASE Make sure to enter Biltmore Prep and also to specifically mention the Hermosillo Exchange Program

Amount: * $
Any amount up to the maximum allowable 2014 tuition tax credit as follows:

Single or Head of Household: $200.00
Married Filing Jointly: $400.00
Married Filing Separately: $200.00

School Recipient: *
Biltmore Preparatory Academy

Program Preference:
Biltmore Prep Hermosillo Exchange Program


If you do donate, please (please, please, please)  let us know so I can let the program organizers know that you are donating as a direct result of his efforts so he gets the credit for his efforts. I don’t need to know the amount if you don’t wish to share that information, but please make sure I have the name you put on the donation form (so that they can cross check).


For the above fundraising efforts, please feel free to share this with people whom you feel are inclined to help Squink raise money to go to scouts or his exchange program.

###


RELEASE THE FEAR

So, I have mentioned a few of the programs that I work with that if you want to support, I would be grateful.


One of the more exciting is that in addition to the School tax credit above you can also do a Working poor tax credit (yes, I believe that you can do both but check with a tax accountant/specialist!!!!)

Release the Fear qualifies as a provider of services to the working poor. Which means that you can use the following tax table:

Taxpayers filing as “single” and “head of household” status may claim a maximum credit of
$200. Taxpayers filing as “married filing separate” may claim a maximum credit of $200.
Taxpayers that file as “married filing joint” may claim a maximum credit of $400.
Source: http://www.azdor.gov/About/FAQs/CharitableTaxCredit.aspx
DONATE to Release The Fear ON-LINE HERE: http://www.releasethefear.org/donate.asp or get ahold of me for other ways. Make sure you mention in the comments that you want the tax credit and that Blair sent you.

And for that Women’s organization, you can make a charitable donation here:
https://www.jlp.org/?nd=donate_summary or get ahold of me if you would like to donate another way.

What is the essence of life? To serve others and to do good. ~ Aristotle

A quick trot into gentleness and gratitude

The other night I helped a friend of mine that I volunteer with by facilitating a space for her to hold an informational event for about 50 or so women. My friend entrusted others in her group to run the project as she had to attend an out of town thing for her work.

What struck me about this is the discordance between my experiences in working with her and what happened when I worked with the others.

My friend gets gratitude. She is a wonderful, bright, beautiful, sassy woman, but she gets gratitude.

I was strongly taken aback by how easy it was for the women whom had taken over for her to fail here. In my close proximity they chose to open complain about the location I had offered and complain about another one that I had helped them procure in the past.

They failed to acknowledge that I had given up an evening with my beloved family for them to be able to do this, they chose, instead, to focus on all the problems but not in the way that would be proactive,

I was incredibly insulted hurt.

I was afforded a chance to speak and I hope I gently addressed their behavior by saying that when no other option came through that I offered what I had.

One of women whom I heard complain (making the most gentle of comments, rather than rude and harsh)  sent me a note thanking me later that evening. The irony is that she was a guest speaker for the group that was hosting this event.

Anyway, gentleness.

Is this a lost art?

I think it might be. I went to look for an image to share and if you Google gentleness, you pretty much find pictures of little kids, animals (and fruit?)

But this is a good idea:

“I hope you will grow up gentle and good, and never learn bad ways; do your work with a good will, lift your feet up well when you trot, and never bite or kick even in play.”
~ Anna Sewell, Black Beauty