Tag Archives: musings

the sky is empty

“I talk to God but the sky is empty.”
~ Sylvia Plath

Ge’ez, Sylvia Plath is sure a downer!

When I was little, I thought my grandparents lived in heaven, not because they were dead, but because they lived in Arizona (a stretch to see how I got here, I can imagine, but bear with me)….

I came to visit them with this kind of sky:

From this kind of sky:

So, when we went to visit (usually in early summer) our plane went up above the clouds, but never came back down through them… so, they must have lived in heaven, right? Please, also note that this was also around the time I was very saddened that Zeus and the pantheon of gods was not “real” and that my mother found me once, kneeling in the front yard praying to the moon-god. I was a wildly spiritual child.

Considering my family did not practice any real form of faith as I was growing up, they were Protestant in Roman Catholic countries after all – and any Protestants that lived where we were tended to be evangelical missionaries and not the most fun to be around – add in that we were considered to be “converted” and there were all those heathen Roman Catholics and indigenous cultures that needed to be saved. 

Many people tell you to lean in to your faith in trying times like this. It is amazing how much you seek something out, something that requires faith. But looking for something that is comfortable, that does not mean I must have a rebirth in any fashion, that means I don’t have to believe fossils were put on earth by satan to lure us to his evil ends,  something other than the spiritual connection to the cancer I got is because I have mommy issues, something other than I am not godly and got cancer because I am being punished… 

fuck – fuck – fuck – fuck

FUCK

How do you find faith in the midst of such fucking insanity.

Notice that is not a question, though it probably should be.

Anyway.

I learned that I had a sizable chunk of muscle removed with my last surgery. Granted, it was not the breast surgery removal of days of yore when women begged for a radical (nay, they wanted uber radical) mastectomy – the kind that took out muscle and bone (think ribs and clavicles). I’m missing 2 inches of chest wall muscle… and I’m still in disbelief… faith.

The way humans think is sometimes shocking to me. BUT, and it is a YUUUUUGE “but”, I get it. While my head understands that if treated correctly a lumpectomy has the same results as a mastectomy and you heal faster – but WTF does treating something correctly mean? My tumor was muscle adjacent, so does that mean that one of those a$$hole cancer monsters escaped and is it hiding somewhere? Somewhere that chemo and radiation can’t find?  Faith.

This is where finding faith again is crucial – but it is so freaking different this go around, faith that is.

If you are prone to that which is beyond the physical and don’t judge, I can share how I am re-learning how to lean in to faith again.  The thing is, I will most likely appear a heretic to you.

The one thing I know, is that I don’t think faith is about re-birth (that concept is what caused me to abandon faith before)… if it is for you, that is awesome – but I don’t buy it one effin’ iota.

I, beautifully enough, am finding this process of rediscovering faith kinda cool. and a bit painful.

It is especially nice since there is a disquiet in this process, of being a person diagnosed with cancer. It was present the first time and it is present again this time.  The subtleties of it that I experienced the first time is magnified, but both of my cancer experiences, so far, are incredibly similar… at least internally.

Because my first round was stage 1 and caught super early and only required surgery it was subtle. I felt like a fraud of a cancer patient because phht, it just needed surgery. People (most of them), aside from the time during the surgery put me at the bottom or low-end of a cancer continuum (that was practically equated with being cancer free).

In this round, where I am currently listed as stage 2B (and probably only because they did not take out more nodes and we will see if that changes after the next battery of test results come in), it is still sufficiently low on that continuum that I still feel like a fraud (though only less so because, after all, it looks like I am getting chemo and radiation this time) and the news about the cancer itself has just gotten progressively worse. Many of those same folks from my first experience are still like “well, you aren’t dying”.

I am adding silently  in my head; “that I know of” because I am still waiting for more tests and results of tests.

No, I am not dying (well, at least I don’t think so, but as I said… I will have a more definitive answer after I see the results of the next test). Trust me I celebrate that!  I am not healthy, I have a chronic disease that gives me (according to my radiation oncologist) an 81% 5 year survival rate (though this varies depending on the sites with such data). Yes, 81% is super awesome, but before this all went down I was with most others and had the general average population of a smidgen over 98% . A 17% drop in my life expectancy is still a crappy thing to have as a part of my life.

Trying to balance a good attitude with crippling doubts is a strange place to be.

I struggle. The struggle is real. Not because I have a Christian need for an after-life – but because I want to be more than just a life form – I want something divine to be a part of this experience, I want to lean in to something when I am so riddled and consumed with anxiety. A set of rituals that I can be a part of, a community where I feel like I belong. IN my head I often say to myself, I just want to be loved through this.

I read about Sherman Alexie today, something that I struggled with, but which spoke to the spiritual little girl in me that the unseen world is there for those that listen.  (the story is here).

I have found great comfort in so many people in my life, women and men – willing to be a part of this process with me.  I hate to lean on them, how do you answer the unanswerable to someone like me desperately seeking?

 

 

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Intellectual fugitives – update

He was interested in research (or at least feigned interest), but Li was considered an intellectual fugitive, unable to commit to any one question or plan.
~ Siddhartha Mukherjee, “The Emperor of All Maladies: A Biography of Cancer”

I am listening to Dr. Mukherjee’s book right now and this phrase caught me. I love the idea of being an intellectual fugitive.

For the record, Li was the physician responsible for the first successful use of chemotherapy, he was fired by the NCI because they though his idea too aggressive. 

One of the things that I love about anthropology is that it, out of the plethora of other intellectual disciplines, allows for more of this than any other.

Someone I knew called me a dabbler once, I think they meant it in something akin to this idea – but dabbler doesn’t sound as nice.

I think we need to have intellectually curious people, a cohort of intellectual fugitives, people who can see relationships beyond the one question or plan. It is arguably a part of that road map to discovery, and a necessary aspect of the path.

But that is merely a musing and not what and why I am here today.

you crazy nipple haters
that orange circle is a modesty patch for all the nipple haters I know.
This cancer shit is tough no matter what – there is so much fear that needs to be managed. It is actually surprising, a test of human resilience perhaps – makes me think I am a devout coward, because I frankly hate having to do this shit.  I find that even keeping busy is not enough to bring peace of mind for a stretch of time longer than maybe 15 minutes.

Where am I right now…

  • I am very close to three years of remission from my first cancer.
  • I am newly into the diagnosis of stage 2B breast cancer, the edge of what is considered early detection.  Yay right, but my heart gets heavy when I think about how my lead in to surgery was so close to being sure that it was stage 1A – and that  following it jumped to 2B and that this is huge and makes my heart feel heavy and squeezed.

My cancers are distinct and unrelated. I write this for those of you that might be thinking this, it is not metastasis. A blessing – and how weird is it to call having two cancers a blessing.

I do know that I must have both chemo (regimen is still to be determined)and radiation (six weeks), with hormonal therapy for 5 to 10 years.

I just don’t really and fully know what that will look like yet.

 

 

 

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::

 

little scraps of wisdom

Before I dig in – happy 11th anniversary to me on WordPress!

I started this blog because I needed one that provided password protection as I worked through something in which I as working with quite a few mean, rich, white, ladies. I never thought I would migrate my very first blog over here, but I did – because of my mom… which bring us to today.

The world, it just keeps spinning, doesn’t it?!?!?!

https://commons.wikimedia.org/wiki/File:Nathaniel_Dance_-_The_Pybus_family_-_Google_Art_Project.jpg Nathaniel Dance - The Pybus family
Nathaniel Dance – The Pybus family

So, for today’s installment of “my mothers reality is just not my own, but I keep learning from her in ways she might probably resent” –

My mother, with a solid gold heart posted this to her social media;

Which is true, absolutely true – with one exception. She is living in a home belonging to someone else (other than her) home and I don’t feel like this applies right now – though in any other place where she has had a piece of the pie this is absolutely true, and I mean it is absolutely true.

And so in my failing wisdom in thinking that she could acknowledge this I commented something along the lines of “if you lived in your own house, it would be”. I will admit that I was probably guilty of being too strait a shooter in this case, I thought she would get that this was true – based on her own comments to me about where she is living.

Anywho…

With in minutes I got one of her texts (I am starting to think that she refuses to call and face shit because she loves the anonymity of texting – you can be as big an asshole as you want without having to visually or audibly deal with the reactions… and  I get it – I am a coward too).

I am the blue –

 

So yeah, I’m not innocent in the exchange.  But, I loved the idea behind the social media post (which is the primary way she talks to me, she really only emails my husband – and rarely calls anyone – which I get, I hate talking on the phone too)….

**blargh**

 

Mom’s – definitely can’t live without them… but (and it is a big BUT) it is what happens after that, which the real miracle… right?

 

 “I believe that what we become depends on what our fathers teach us at odd moments, when they aren’t trying to teach us. We are formed by little scraps of wisdom.”
~ Umberto Eco, Foucault’s Pendulum

 

Dat’s done get done. 8/365

 

What did I get done? The prompt asks that, as it stares at me, from the screen shot on my phone like a duck-faced selfie ready to be giggled at like a twelve-year-old boy.

This is a crazy question.

I woke up today. I woke up feeling like crap.
I thought about calling in sick, then realized I had to take my son to school and just how much is on my personal schedule today.  Decided to take it slow, son and I could be late.  I worked on a grant, watched/listened to The Great Gatsby (audio-book during my solo commute, movie while I worked on the grant).

My day is not over yet. I have a logic model to finish, an event to attend, a child to pick up, some night-time cough and cold medicine to take and a bed to get in to. I think I will manage to finish this up, and thankfully tomorrow is another day!

(from here)

Whats for dinner 7/365

It is supposed to be about what I had for dinner, but that has not happened yet today… but, I do know what I will be having.

This

From this site.

Though I call it cochinita pibil.

I also pickled some onions.

from this page.

I did not really follow either recipe. I made the pork in a crock pot, because I thought it would make the house  smell awesome.  It did! I also improvised an achiote paste – and yes, I keep achiote in my pantry. I also used a blood orange.  Because of the slow-cooker and the improvised achiote paste, the meat is not as orange-brown as is traditional, but it tastes wonderful!

(from here)

Making me mad 6/365

Today I am supposed to write about what is making me mad.

I used to love this magazine, the back page folding exercise was a favorite right next to Spy Vs Spy. 

Aside from nostalgia about the magazine, nothing much comes to mind. I am sure i get mad, but it is those fleeting surges that are really rather insignificant; like yesterday when I was standing at the top step of my porch when my mini great dane decides to jump on me and I almost fell back – but that isn’t anger it is really fear.

I drove to work this morning thinking about this… “what do I get mad about”.

  • One that has been pointed out to me is that I do not like being teased, especially if there can be any inference about my being stupid.
  • I hate people who make fun of others. I try really hard not to do this myself, not always successfully.

Other things upset me, but they do not quite make me mad.

 

 

(from here)