tickling the tail of a sleeping dragon

“tickling the tail of a sleeping dragon”.
~ Richard Feynman (the story behind this quote)

There is an infinitesimal moment in certain kinds of situations that have about them a sense of the surreal, of suspended animation, of some sort of unexplainable something that detaches you from your surroundings and yet manages to implode you into them. Everything makes sense, yet nothing does.

Getting told gut wrenching news can be one of them.

I had wanted to come here and put into written posterity my fight with Hello Kitty that lead to a paisley shaped second degree burn. A story such as this had elements of the absurd coupled with a funny anecdote about managing pain, discomfort, and numbness after surgery.

I’ve been pondering, as well, putting down the why… as in why I share this “journey” in the way I do. (side note: I hate the word journey in this case… Journey is a beautiful word, cancer should never be a part of its etymology)

But really, all I “feel” like I want to do right now is to throw things and break them while cussing like an angry drunken sailor… at least until I see that in the whole scheme of things I’m pretty lucky and behaving like that impulse, is pretty self-indulgent and whiney so I don’t and just end up having to tell my husband that I’m talking to myself again.

I do talk to myself quite a lot now, primarily because I start thinking of people who have expressed some dislike towards me and it’s me asking them if they’re happy now that I’ve got cancer… again.  It’s a crazy conversation I am having with myself. I figure it is how I am processing the whole fault of this situation – as in it is my fault while trying to understand why – I must be a terrible person, but I don’t think I am but maybe those who do think I am can understand this and I am, I guess, trying to see it through their eyes. Again, I can see this is a clinical process, but it is one I am going through – it is so weird.

May be that I need to be appropriately embarrassed by my “fight” with Hello Kitty, and get my mind off of this sinking hell hole of self-pity or self-loathing.  The “why me” is a constant battle in managing a chronic disease such as mine, even more so this second go around. I fight it through humor and laughing at myself.

So, back to Hello Kitty, and this popsicle eating dollar store Hello Kitty gel ice pack in particular…

This is the beast that burnt me

In a nutshell, I wasn’t thinking one single bit.

I sleep on my side, and on the side where I had my surgery in particular. I am one of those people who turns in to a heat emitting furnace when sleeping which made my incision sites (yes, there are two) feel warm, too warm. So, I would wake up and stumble to the kitchen, open up my freezer and take out one of my perfectly sized Hello Kitty gel ice packs and put them in my sports bra and head back to sleep. The instant cooling felt wonderful and in such a state nary a consideration was given to the fact that I put a gel pack straight on my skin. Please take this as a warning, doing this is unbelievably stupid and I know better and still did it.

The resulting second degree burn is paisley shaped and about two inches long and an inch wide, its blister has popped. I will admit that I have to fight the urge to draw on it and make it pretty, if only to be a distraction that I jumped up a whole stage in cancer.

All of these distractions I give myself feel like I am tickling the tail of a sleeping dragon, because the medical news I get never seems to get any better, just gut-wrenchingly worse.

::tickle::tickle::

 

What’s something worse than being told you have cancer?

One is, being told you have cancer again.

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that orange circle is a modesty patch for people that hate nipples.

I was living well with my closing in on three years from my bout with cervical cancer. I was finding my way out of the darkness that descended after that. Life was good,

I was told I had breast cancer in May. I join a group of over three and a half million women in the United States that have a history of breast cancer. That is a BIG a$$ clan.

Technically, I must admit, I am not going to be one breasted, I will be more like 1 and a 1/2 – I need to change the image above (I suppose).

The one breasted story comes from reading the amazing book Refuge by Terry Tempest Wiliams, and read this here.

The Amazon comes by way of my birth and childhood, in a city high in the mountains that help feed the Amazon river and its tributaries…

The Amazon also comes by way of my height, people associate tall women with the narrative of the Amazons from Greek mythology.

These Amazons were also reputed to be one breasted, some say because they were warrior women – this is up for debate.

I got here because women. Women put into place a series of experiences and events that allowed for me to get a mammogram that detected the mass – it is small and deep enough that no one can feel it.

This is from a letter I sent to the women who had helped me detect this early.

The whole thing feels a bit surreal. I think about what had to be in place for me to get my mammogram and it is rather miraculous and so heavily dependent on so many women that are in my life.

  • My mom for taking me along to the nurse training clinics for women’s health for the nursing students at ASU.
  • My own professional health advocacy efforts through both ASU and UofA.
  • My aunt, a survivor.
  • Rita who started a local Breast Cancer Fundraiser that was supported by the Junior League of Phoenix (JLP).
  • Kay, who wrote a grant back in 1990, through which I would be propelled to join the JLP and continue the effort.
  • Kim, whom I met through Gail (my mentor), who asked me to come help translate for Kay’s grant because I was a practicing breast cancer advocate (not an activist as someone recently referred to what I did as).
  • The many women in JLP leadership who let me continue to manage and oversee the mammograms at rummage.
  • Pam and Catherine for helping secure funding for the continued efforts of the mammograms at JLP rummage.
  • All the women and their stories who have passed through the mammograms at rummage project for the last 17 years.
  • My oncology Nurse Practitioner, whom I see for a previous cancer, that said it would be a good idea to get a mammogram back in December.

If not for the combination of the women above, I would not have found myself in the right place at the right time to detect my cancer early.

Life is still good, a bit more overwhelming than I would like, but good.

My surgery is next week.

Radiation and other will be shortly after that.

Send me good thoughts.

 

supernovas in disguise

He said the freckles on his arms
were roadmaps to the sky,
and the bruises that he carried
were supernovas in disguise.

“Stargazer”
~ Alaska Gold, Growing Light

Some days are filled with faking it to degrees you never wanted to have to fake it to.

It’s like that scene in Pretty in Pink where Margie Potts tells about how she never went to prom and something about losing her car keys… wait, let me look….

“I have this girlfriend who didn’t go to hers, and every once in a while, she gets this really terrible feeling—you know, like something is missing. She checks her purse, and then she checks her keys. She counts her kids, she goes crazy, and then she realizes that nothing is missing. She decided it was side effects from skipping the prom.” (source)

Yeah, that – only its like Oh yeah, I fucking have cancer, for the second time.

So, I set out to count my proverbial blessings and try to feel better.

Blessings:

  • My mom and aunt are not being a$$holes about this time.
  • I have a cadre of friends that are staying in touch and making me feel loved.
  • I am making sure that my choices are about how I want to manage this and not so much about how I can help others manage this go around.
  • I am working and have a job.

OK, that is all I have the energy for right now.

ANYWHO…

Jane (my tumor) is being a supernova right now, in that she is purple, like grimace or barney purple. My doctor warned me yesterday that it is most likely a moving supernova (he did not actually call it a supernova) and she will take a ride all over my breast. This should prove interesting.

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Jane Mansfield, My Champagne Supernova

Poor Jane, she looks like hell. She feels like hell. She just wants to go to bed and sleep.

Hey, maybe talking about my new (and *improved*) cancer in third person will help with resilience and shit?

Anyway, I get to take off Janes’ dressing this afternoon.  I wish it were some sexy erotic experience but it will most likely hurt like hell. I will take pictures, I probably won’t post them.

Also, I have been blessed with (up until now) really nice breasts – my whole life – I am talking good lookin’ boobies – they are symmetrical even.  Yes, I am rather vain about them too. So, here I am, facing a life with a deformed irradiated breast in the near future. I am going to be very honest and say it breaks my heart, I love my boobs whether I was skinny or fat, , tanned (guffaw)they were a source of pride. Will I be proud of them after they (the right it, really) go through some huge surgical and medical transformation? Fuck. I hate facing my vanity and feeling like I am stupid. I mean…  it is a freakin’ boob. It is not my most charming asset (or is it?). OK, now I am just trying to be funny. Which means I am feeling less freaked out by this whole experience.

Though, having your brother drop off a package of granny house dresses that our mother bought me made me feel old – because they are GRANNY DRESSES. They button up the front though, and between the surgery and the (hoped for) brachytherapy radiation,  it will be easier to wear in recovery phase. So, I guess I better pull up my granny panties (not at that stage yet, thank you baby jebus) and buck up.

Now, I want ice cream.

 

 

May I introduce you to…

“It is hard to look at the tumor and not come away with the feeling that one has encountered a powerful monster in its infancy”
~Siddhartha Mukherjee

I friend mentioned that she felt a certain disconnect to what is happening to me this time around so here is a brief update for her, for me, for the angustia inside. So, it has been one month since the first biopsy. Hmm – just realized that I had biopsies a month apart, that is crazy and will calendars never cease to amaze me with their power of recollection.

Anyway, I sit here today, with a purple right breast and my saga as a wounded Amazon continues. Except this time I am waiting to find out if there is a second mass of ye’ ol’ devil cancer in there. What has happened since I yelled cuss words at my fabulous doctor when the news was given? Well, let me tell ya…

I have seen WAY TOO MANY FUCKING DOCTORS. Some of them good, some not so much.

I sought three opinions, one of those was with a tumor board group. That was awesome, in part because it showed me that one of  the oncologists I was leaning towards made an error when we spoke. They misread my diagnostic mammogram and ultrasound report and sent me home after that first visit wondering all sorts of crazy, worrisome and untrue (at that time) shit.

I immediately got a horrible cold  (stress does that ya know, makes you sick) and wasn’t sleeping, and frankly looked like shit. The oncologist I ended up picking  ended up giving me an rx  for some meds to help me sleep. Thankfully I just needed one for that to change. They also ordered an MRI – which found something called a linear enhancement. This linear enhancement (enhancement of  what, I am still wondering) required another biopsy, which I had yesterday. No, this was not your regular biopsy, it was an MRI guided one. It was a process that must have been designed by men because it was fucking awful in so many ways. Today, my breast is a purple mess, and I can’t yet see the incision site. Today, there is a certain kind of peace though – testing is behind me – now it is about waiting for results. Results I should have by Monday.

I am trying to have a sense of humor about this, as such I have named my primary tumor Jane Mansfield. It is a dark humor kind of thing (I seem to recall that the real Jayne Mansfield was beheaded in a car accident, but it is also because I want to find the beautiful (and Jane was a beauty and no monster) in this insanity. Let me introduce you to Jane (I did this little project before I knew the name, fwiw, and there are several versions but Jane is now official) :

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Jane (not Jayne) Mansfield

 

The other craziness is that all this has come down during a revisit with faith in my familiar “theistic-agnostic-I love Our Lady” form, and it was cool until last week. A friend asked me about who was providing me with pastoral care during this, and I didn’t know what to say.  As a deacon, I was part of pastoral care, you kinda know that people have to want it. I have, after all, told that god with a capital G to fuck off since my diagnosis. I don’t feel bad about doing that. But in terms of receiving care,  I also know I don’t want to pray, especially not with anyone else. I am unsure how to proceed on this front, it feels like something I should want or need… yet, I don’t…. but I am so totally unsure of how to proceed regarding receiving pastoral care. I don’t feel the community for it, so it doesn’t make much sense.

I still have not told my perfect spawn, but what is there to tell. I did talk to a child life specialist about how to handle this and got some reassurance that I was right in waiting to tell the news and how to handle the treatment phase (e.g. everything else).

So, that is where I am at. I have a personal photo journal of this experience, which I may share at some point… but I am really going to have to want to share the pictures of my bruised body and provide evidence of my bruised ego.

 

The next start of the ongoing saga of the wounded Amazon

Nearly three years ago I was told that I had cancer, it was a fucking ridiculous experience and it was barely stage 1.  This planet does not do cancer well.

Anyway, I am a persona that brings in all senses to my experiences. The visual images that came to me as I was navigating that fucked up process were related to Norse mythology, and most specifically Huginn and Muninn, Odin’s crows.

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From here, in Portuguese

They were the guides for me during the process. Guides in that they became my eyes and ears, separate of my body, as I made choices and suffered through their consequences. and only in my thoughts and in my dreams.

I love crows and that whole lot of birds in the Corvus genus. I have one tattooed on my back (it is taken from my maternal family crest).

Their images were leaving me, slowly their image disappeared from my dreams. I missed them, but time was passing and I, as a full person, was healing.

Several weeks ago, before anything new was going down (and I will get to that in a moment), they appeared, perched on the shoulders of, what I then thought was, a Valkyrie.

I thought “hmmm” and continued on with life,

Then, shit started going down.  A routine mammogram resulted in suggested follow-up. Follow up resulted in suggested biopsy. Biopsy, a mean mother fucker, told me cancer.

again

My physician called me with the results. His first question being “where are you right now” as if that was not a clue that bad news was coming.

“Home” I reply.

“blah-blah-blah invasive carcinoma of the duct work blah-blah-blah” is all I recall from his end of the conversation… oh, except my response… which was “FUCK”.

I somehow hang up and call my oncologist and ask for an appointment.  I get one, I am told by a friend to get a second opinion, I get three. I am now one week later, waiting for my visit with Dr. Third Opinion and I really have no clue how I managed to get to here from that day.

However,  yesterday as I left my visit with Dr. First Opinion, I realized that my crows had appeared not on the shoulders of a Valkyrie, but on the shoulders of an Amazon warrior.  And, frankly, with the ways myths go they (Amazon’s and Valkyries) were probably based on the same group of bad ass women. Why do I think so, you may wonder? I have no clue, but it is my thoughts and it just felt right, but then it is probably some deep recollection about the rumor about them going around that they used to cut off one breast so that they could be better archers. Ha!

Some images of some bad ass Amazons through the centuries;

Source
Source

Source

For the love of women, from a sugar frosted nutsack (a book review)

One of my favorite authors is Mark Leyner. I have described him as the postmodern reasonable facsimile of Umberto Eco’s doppelganger… at least I do so to people with whom I care to discuss authors of impact without fear of judgement (someday  you should let me tell you about that time I was found wanting for my love of YA literature).

I am reading,  listening  read his novel about the gods, because I love novels about the gods. For the seriously important information about this book:

The Sugar Frosted Nutsack: A Novel
by Mark Leyner
Link: http://a.co/3YsVZVq   (prices vary)

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Get it? 

The throws of love seem to predominate any tales about the gods (I am looking at Neil Gaiman here, American gods was also a fucking awesome listen if you find the full cast audio version).

The Sugar Frosted Nutsack is a snarky and often hilarious look at modern culture, with some sweet gentleness mixed in. It is past absurd love-story that involves scenes reminiscent of Alice in wonderland (a human becomes 50 ft tall) and part pornographic romp (a plethora of dildos of an amazing variety are involved).  I have missed Leyners’ work, but decided that he was absent for about 15 years because the world needed to catch up in terms of interestingness.

You know I loved the audio-book when I purchase the actual one. Can’t wait for it to arrive.

Anywhosiwhatsit –

What stopped me in my tracks though, was a section where the character, Ike, plagiarizes this gem below which I am reproducing in an homage, if you will, to the story – but in actuality because I want  “Ninety-seven percent of people think it was SUPER-SEXY of…”

ME

Ike to totally plagiarize that from O, The Oprah Magazine.”

1. Even little girls, in all their blithe, unharrowed innocence, have a presentiment of sorrow, hardship, and adversity…of loss. Women, throughout their lives, have an intrinsic and profound understanding of Keats’ sentiments about “Joy, whose hand is ever at his lips Bidding adieu.”

2. This sage knowledge of, and ability to abide, the inherently fugitive nature of happiness somehow accounts for the extraordinary beauty of women as they age.

3. Women have an astonishing capacity to maintain their equilibrium in the face of life’s mutability, its unceasing and unforeseeable vicissitudes. And this agility is always in stark and frequently comical contradistinction to men’s naïvely bullish and brittle delusions that things can forever remain exactly the same.

4. Women are forgiving but implacably cognizant.

5. Women are almost never gullible but sometimes relax their vigilance out of loneliness. (And I believe most women abhor loneliness.)

6. In their most casual, offhand, sisterly moments, women are capable of discussing sex in such uninhibited detail that it would cause a horde of carousing Cossacks to cringe.

7. Women are, for all intents and purposes, indomitable. It really requires an almost unimaginable confluence of crushing, cataclysmic forces to vanquish a woman.

8. Women’s instincts for self-preservation and survival can seem to men to be inscrutably unsentimental and sometimes cruel.

9. Women have a very specific kind of courage that enables them to fling themselves into the open sea—whether it’s a new life for themselves, another person’s life, or even what might appear to be a kind of madness.

10. Women never—no matter how old they are—completely relinquish their aristocratic assumption of seductiveness.

And here is one last thing I know—and I know this with a certitude that exceeds anything I’ve said before: that men’s final thoughts in their waking days and in their lives are of women…ardent, wistful thoughts of wives and lovers and daughters and mothers.

Source: http://www.oprah.com/spirit/what-i-know-for-sure-about-women#ixzz4cka6nyTB

And because of this.

I give you this:

 

 

idyllic mayhem or excuse me, my privilege is showing

I will be the first to admit that I come from privilege. I have been so shockingly lucky for so many things that were and are in my life. Privilege, however, does not mean life is easy. I share many things with people who are not as privileged as me.  One thing I don’t do is fear facing the dark aspects of life. I work hard at being vulnerable. I tend to think that vulnerability makes us more open to others.  Social media may prove this to have many exceptions.

Mary granting the Great Privilege in a 19th-century painting by Charles Rochussen.

One story that makes me deeply consider privilege was when I had a friend visiting from the Midwest and was excited to take them to our local border town for something different but close to home and an example of life similar enough to how I grew up . I did not immediately notice, but my friend was deeply uncomfortable and asked to return to the USA within 10 minutes. I was so bewildered.  I talked to them about it a few years later and they shared that they had never seen anything like it, it was so foreign that it was uncomfortable. I did not quite understand, I tend to embrace those moments of being uncomfortable, they teach us so much. Perhaps that attitude can be too much for some?

I was called to recall this memory when I happened across this quote:

He (John Mellencamp) also confessed he could never live in Manhattan. “I’m too sensitive to live there,” the musician said. “I can’t see poor people. I can’t see the suffering. I can’t see the trash on the streets…I’m not leaving Indiana. I’m going to die here.” (source)

 

Yesterday was International Women’s Day, and the post that appeared here on Blair Necessities yesterday started out as a Facebook post. It was truly my intention to highlight that women can be cruel and that any success that women can have depends on then being ready, willing, and fully able to lift each other up. This is not to say that you can’t call a woman out on something we perceive as bad, but it certainly was not a call to attack. That is, however, exactly what happened over on The Facebook.

Someone I knew from High School thought the post so offensive that she decided to call me out for it. It was bizarre. I am still trying to wrap my head around what exactly happened, what she found so offensive… I do take issue with her attempt to direct my narrative when she suggested that someone elses’ comment would have made a better story. When she went on to call my story disgusting, I just had to stop. I was knee deep in a migraine and dealing with a kiddo who was not feeling 100%. I turned off the sound of notifications.

It was kind of crazy.

I have preserved that conversation here.

The thing is, I don’t hate being uncomfortable, I wonder where she got that from?

And this post started out as something completely different.

“The idyllic mayhem of two cultures colliding just doesn’t seem as funny anymore.”
~ Kris Kidd

 

smoke gets in their eyes – My thoughts for International Women’s Day

“Ladies who play with fire must remember that smoke gets in their eyes.”
~ Mae West

For international women’s day I am going to tell you all a story that causes me some disquiet about celebrating this particular day.

When I was back in Ecuador as an adult I visited with a friend of my fathers and his family on a trip to their cattle ranch high up in the Andes mountains. The scenery was spectacular and glorious, there is nothing like being on those mountains for me, there was wind so loud I could hear it, it swooshed by so hard my cheeks were quickly windburned. Then I sat in the grass and there were these tiny pink berries buried in the grass, a slightly sweet taste that I hadn’t forgotten after a 20 year absence. I had loved these kinds experiences on my own family ranch when I was little, and I was so grateful to be able to experience them again.

UNTIL

I saw the wife, a woman – a woman of means, take off her shoe and hit the male ranch hand, a man with far less means than the family, a man they had hired to care for the ranch while they lived in the city. She hit him because he had not been able to do something by the time we arrived. She did this in front of his wife and kids, in front of her own family, in front of me, a guest. His family and their stoic faces as she beat him about the head and shoulders are still with me today. I was horrified. The husband, my fathers friend, was mortified that she did this in front of me, but did not speak up. I did not speak up.

Considering the caste system that is in place in that part of the world, I am not sure what my speaking up would have accomplished. However, I still feel shame; shame that I did not speak up and shame that it was a woman that was behaving so atrociously.

Here is why I am sharing this story though, because women, like men, can be awful. I want to illustrate how much work there is to do in creating a world I am not led to shame because of my gender through my own behaviour and the behaviour of my fellow women.

So, I ask you today, all of you, be beholden to how you treat others, regardless of gender, regardless of caste. We all carry kindness and gentleness within us, and let us all move together in that.

quote-more-than-cleverness-we-need-kindness-and-gentleness-charlie-chaplin-49-88-52