Monthly Archives: December 2014

Find the beautiful

THAT

Find the beautiful

Yes, that…

is my theme for this year.

Though we travel the world over to find the beautiful, we must carry it with us or we find it not.
~ Ralph Waldo Emerson  


Finding the beautiful… it is very present in the external. 

But as I navigated just how ugly it was to go through this cancer thing, how easy it was for people to forget that it is my battle, and I had to find myself repeatedly trying to forgive… I lost my place. And I was so hurt by people that I am close to (who are ashamed of my diagnosis, who couldn’t/can’t talk to me about what was/is happening, who took things from me with out asking, who made things harder for me….) that I forgot to stop and find the beautiful.

So, fuck the folks who take away from this… they can live with their choices.

And I am so lucky, because I have people in my life who can help me do that. So, I have to let them in and help me see what I need to see.

I,  am so excited. Because, you see, this year, 2015, I get to find the beautiful.

Yes, that…

is really my theme for this year. 

I can’t wait for this year to be over.

This year.

I am trying to remember the good things, the good times…

but I have to think hard to call them to mind.

I allowed someone with control issues to take Christmas from me. my mother spent most of Christmas Eve in the hospital… and everyone seems to have forgotten that I am still recovering from surgery.

Today is Christmas.

I enjoyed seeing the cousins, being with me husband, son, and brother.

I was glad that I could offer my mom some support as  she lay in bed, feeling miserable. I am not sure I offered any comfort, but I would like to think I helped her feel better.

Please, I get pleasure from the pleasure of others… what beautiful things happened to you this year?

Gentleness

I feel a little better today. I still am working hard in my brain as to what to do about everything in my post yesterday. I am sure it will come to me.

One of the images I use when I want to feel better is one from my life back in Ecuador.

Specifically, being on our ranch and sitting on the grass higher up on the mountain.

This is the mountain our ranch was on:

Pasochoa

I have no idea where our ranch was in relation to that picture, but I have many good memories there.

The one that I am calling to mind is about sitting on the soft mossy grass, just above the tree line. There is a grass there that is soft like moss, but is a very small almost light green ground cover. It has these tiny pink berries, berries so small you can’t even see them unless you are looking closely. I can feel the high Andean wind burning my cheeks a bright red. I feel like I can hear the sound of God in that rush of wind blowing past my ears. I weave my finger in to the soft plants, smelling the earth. Listening to my horse hobbled nearby, and the chit-chat of my family enjoying a picnic. I feel connected to the earth, an extension of her, like a small dendrite-like messenger. I feel my hair blow across my face and whip around wildly in the wind. I pick the tiny pink berries and put them in my other hand, which is cupped in my lap… filling my cupped palm slowly with these little light pink jewels. Fairy food, I am certain it is fairy food. I put them in my mouth, one by one. tasting their faintly sweet juice. I watch our cattle off in the distance, grazing.

There is something about that moment that is so gentle, so peaceful, that it can still evoke a certain calm when I am weathering a storm.

"Sorry about your whore cancer, lady"

I am getting  fighting  AT  (ok, ok) resisting giving in to the angry stage.

I think.

I keep get the strangest urge to throw bottles at walls, so I can watch and hear them break.

I get why this happened to me. I just don’t like that it happened (is happening) and I don’t like the stigma.

So, The Onion, known for its tongue in cheek humorous articles, published this article.

Considering that current experts estimate that 70% of Americans have been infected with HPV, it is pretty spot on and does it pretty well.

I actually thought it was clever, but the problem was that I happened to see the link on The Facebook (here).  And the first comment I saw, was the one I used as the title of this post.

That is the thing, there is that stigma. Hell, I have family members that I could see using the same or similar terminology. And it is so “unspoken” among most people.

And it hit a raw nerve. Because this is something women have the consequences to, not men. So women get called all sorts of horrid things.

Here is the thing. I don’t think I am a whore. Never was.

But I feel like I am being called that. And it is pretty prevalent, the stigma about women who get it. There is just so much about this I want to scream at.

I mean having your life attached to the word cancer is bad enough, but cervical cancer?!?!?! “That slut cancer”.

Consequences, I suppose. I try to make it less hurtful… but I can’t seem to right now. I was never a slut.

I get angry. I get really pretty fucking angry. And it ebbs and flows and I try to keep it at bay because I don’t want it to consume me. And I don’t know what to do about it.

holding the darkness at bay

So, after feeling a down due to yesterdays ramblings and self flagellation I find I need to pick myself back up.

The other day someone came to me and asked how I was. I told her that is is a day by day process. That I feel good, that I am grateful for so much.

She went on to ask if I had experienced any dark moments, any depression, and tears. She added that her sister is a doctor and had told her to expect me to get to that point at sometime.

I cried when I got the first message. there is something about being told to call an oncologist that puts a certain indescribable pressure on your heart. To hear it while alone in an office, is hard because it means that you have to call people and share the news – and I will be very, very honest, that I was tempted to not tell anyone. Though I imagined that my husband and mom would have been extremely upset with me had I gone this route – in spite of that though, I can’t tell you how tempted I was.

I even called the oncologist first. I called my physician back and asked for a copy of the pathology report we talked about the long wait until my oncology appointment and then what the report meant in terms of what was happening inside my body. I went and sat by the fax and waited for the report to arrive (he was sending it right after we hung up). I got it and sat in my office, reading (memorizing) and mulling the news, tears in my eyes. I dried them, and decided I had to call my husband and so… I called my husband and told him the news. He was devastated (he had been a young boy when his mother had gone through two cancer diagnoses, I think that what was happening to me brought all those memories back) and I had to be strong and reassuring. After I hung up, I sat in the office some more, tears in my eyes again. Bracing myself for the call to my mom. She was walking into a meeting when she answered. I heard that stop in her voice. It was the same stop when I felt when I had to schedule an appointment with a hematologist oncologist for Squink after he was born.  Granted that was just for some jaundice we did not seem to be able to get rid of, and I knew that it was the hematology part we were seeing rather than the oncology part, but still – it isn’t something you want to deal with as a mom, your babies should never see an oncologist, that should be the rule.

So that was a quick conversation and I sat in my office again, a sense of “why me?” prevailed. My boss who had gone through that cancer route walked by and noticed I was upset, came in and I shared the news with her. After that, the next 24 hours are kind of a blur. I know I called my dad, and he was probably the hardest one to tell… but only because I had no idea how he would react, and he has a tendency to avoid bad things and go on and pretend as if they did not happen so the idea that he would ignore me in this was something I considered highly probable. I only remember that at some point by the end of that night, I was sick of talking to people. Wait, I love talking to people what it was is that I was sick of re-telling the story, the news. I just did not want to have to say that damned word again.

That has been the darkest point so far.

The days following are still a blur. I talked to my siblings, texted with Prima. Made arrangements for all the responsibilities in my life that would be put on hold. Sent out a group email to women who I adore. Friends put me on prayer lists, and I got through the interminable wait until that appointment. Once I saw the oncologist, it felt so much better, because there was a plan. I knew what was happening and it felt good.

I would even say that I was a bit jubilant the day before my surgery, because that mass of mutating cells was getting removed.

I was in the hospital almost a week, determined that this whole thing would not bring me down. I have managed to stay positive through the rest, even that horrid backslide where, through projectile vomiting and other effluvia, fever spikes and chills all intertwined with a general sense of feeling horrid, I lost over 10 pounds, got dark circles around my eyes and began to lose hair. I was still in a good place.

I have these moments that seem to want to step in to those dark shadows; when I noticed that there is an area near my incision is numb (normal, but a strange feeling), talking to someone else who has gone through this process evokes some teariness, after time spent wondering if I am avoiding dealing with something, being told I hurt peoples feelings all brought forth some form of gloom to my mindset.

Thankfully, they are able to be beaten back.  And I think that is my job right now.

So, when it comes to gratitude I may be, unintentionally, a selfish twat*

* in the sense of being a foolish or despicable person, not the other thing.

So we have this:

gratitude     [grat-i-tood, -tyood]
noun
1. the quality or feeling of being grateful or thankful:
“He expressed his gratitude to everyone on the staff.”

But the thing about being grateful, gratitude, is that it is contingent on several factors:

Feeling it (this is the super easy part)
acknowledging the feeling (this is manageable)

but the hard part comes in the next steps…

communicating the gratitude to the person/place/thing for which you are grateful.
communicating it effectively.

When my grandmother died, I wrote her eulogy.

I was devastated by her passing away, I was extremely sad and trying to be strong because of my mother and aunt, after all they were allowed to indulge in a deeper sorrow than I could.

So, I wrote these words of gratitude into the eulogy and while I think it was a wonderful and powerful tribute, I know, I KNOW, that I inadvertently left people out of it and who should have been included. Which means I know I hurt peoples feelings.

Having your efforts acknowledged is important. I know this from both personal experience and from the lack of a personal experience.

As I navigate my recovery from surgery and everything and have posted my gratitude here I have managed to hurt people I love, both in omission and in not enough. I feel sick about these. The thing is, this is a journal and because it is public I have to tread lightly. But I treat it as a means of processing, of navigating things that can be public. But that is not easy in the aether – It has been requested of me, in the past, that I remove things, that I not include things, that I redact things… and I have honored those. but it has created a careful ground to tread upon.

I am not allowed to talk about or post photos of my [relationship intentionally held back].
I have been requested to limit discussions about others I love and about some personal experiences.
Squink and I revisit what I can post about him here on a regular basis.

So, I suppose that this is not truly my journal… it comes out as an allowable letter to the world based on my life and its experiences as long as I don’t violate some things. I am OK with this.

But, lets get back to gratitude.

Felling grateful is a humbling experience. Because to get to that feeling you have to go through some kind of vulnerability and being vulnerable is not easy in the sense that is a state of being that we seek.  I mean I don’t really know many people who seek to be vulnerable… I tend to think of us humans as trying to avoid being vulnerable.

So here is where I am a twat – inherent in gratitude is sharing it. I have written almost 40 thank you notes (and there are more to be written) to people that helped me along this path… that supported me, that checked in on me and that overall, made me feel like I had a wonderful group of folks supporting me… so what I lack, is that ability to let these people know I am grateful in a manner that conveys just how grateful I am. Because gratitude felt is only part of the experience, gratitude is a social thing (even if you are grateful for a gorgeous sunset or other in-animate thing). So the art in gratitude is that you share it effectively. I suck at that part. I feel gratitude intensely, I tear up and get that pain in your chest that is a good pain, but I have found that is the easy part.

The hard part is going to the next step of acknowledging your gratitude and announcing it.

It is easy for things like my deep gratitude for how the desert smells after a rain – for example – I can post the word “Creosote” on “The Facebook” and people who have spent time in a desert rain get it.

But, saying “I am grateful for what you did to me, thank you” is hard. It is hard because a “thank you” doesn’t cover it. And often, especially in more complex relationships, there is a back story that might be just as important… and in terms of this block of a small thank you notes, how do you put that all out there and say “thank you for the totality of what you did for me” without sounding like a freaking Hallmark card (not that hallmark is bad, they make wonderful cards and I buy them when I buy cards)?

So perhaps, this is my big lesson for the rest of my life… to try and get better at this. Because, while I am very comfortable with feeling at it, when it comes to professing it – I really do suck at it.

“Feeling gratitude and not expressing it is like wrapping a present and not giving it.” William Arthur Ward

More thoughts and a tale from my misspent youth

Reflection
Something I do a lot of right now.
As I watch, feel, and notice my body heal from a pretty brutal surgery… I reflect back on my life.
What is so amazing to me is that I have such a wonderful group of people here in my life now. 
A husband who waited on me through the surgery, held my hand, brought me food, made me eat when I did not want to, bought me more thermometers than he should have had to purchase for me as I lay in bed vomiting with fever and chills and consistently losing them to the depths of my mattress and covers, who rinsed the vomit bowl so I could have a clean bowl for the next round, massaged my neck that was sore from throwing up, is waiting patiently for my body to heal, fed me, clothed me, monitored me while I showered in case I passed out… crap, the list of things he did [is doing] for me is too long to even recall… I just know that I could not have gotten through the last few months without him. 
Then there are the folks that helped arrange food deliveries, delivered food, send cards, visited, called, sent a text… I am humbled by all of these things. 
An aunt who fought against her ingrained instincts and took care of me as best she knew how when my husband couldn’t stay with me.
My mom, who took time off and flew to be with me and watched her first baby sick and vomiting and trying to recover; held her hand, rubbed her brow, made me smile and provided those moments that induced healing that only a mom who loves to mother and nurture can give.
Friends who made sure I felt loved and fed, acquaintances who sent notes and some who even made sure I was fed… they came out like a force field and I was unprepared for the support.
I did not expect any of that, support that is… from anyone outside my immediate family. 
I am not sure why. I tend to keep to myself… I have been deeply burned by some people I thought were friends, so I tend to keep to myself and not talk to many folks. So, when I got the “NEWS” I had to let go, I needed help, I need a group of people to have my back (and not throw me under a bus without a chance to tell my story) and they came out of the woodwork, and I was touched, and am still touched, humbled.. tears are in my eyes now, as I write.
Even friends who I exchanged superficial texts with stepped out and were present to me. Near strangers offering so much more than good wishes.
The world is truly a magical place filled with so much good. I can’t wait until I am free to frolic (without pain) and pass on that kind of goodness… for now, I heal, and am blanketed in gratitude that I have a tribe whose large size I didn’t know.
~ ~ ~
I was driving and reflecting on what good things have happened to me in my life over the years and  in a brief flash of mental inner dialog that occurs in seconds I noticed that I drove by a building that once housed a flower shop in the 80’s when I was in high school and which was made famous by a stop by then president Reagan who went to buy flowers for his mother-in-law who lived up in some super fancy “estates” near my house.
I remember that visit, he was new to office and it was a stop that made the local news. The other funny thing is that night some friends and I went to visit a friend that lived in those “estates” and was a neighbor of Nancy’s mom… how do I know,, because of the plethora of secret service who hung out in the neighborhood. I remember a group of us running to the car from my friends house and the agents getting a little “jumpy” – but those were different days. Now we would probably be shot, then we just got stopped on the way past and told to behave by men in dark suits that wore sunglasses at night. 
I smiled at this memory as I drove away from that building that once housed the famous flower shop; I loved high school. I had friends whose company I enjoyed. I had good times… I was a little bit of a rebel, but I had a heart of gold, and the naivete of a child.

thoughts – random and reflective

The other night, as we arrived at home I asked Squink what he thought tomorrow was… he turned to look at me as if trying to discern if that was a trick question.

I smiled at him and said “It is so many days until your birthday”

He smiled and then replied with “And yours is tomorrow!”

I asked him how old he thought I would be (this was the trick question)…

He looked at me, squinted his eyes a bit. Said “56?”

I shook my head to say no.

He replied “60’s?”

I shook my head no, again.

He opened his eyes wide and said “70’s?”

I smiled, how wonderful to be so young and so unaware of what those numbers can mean to an adult.

I smiled at him, patted his head and told him it was in the 40’s.

He paused thoughtfully.

Then he changed the topic, in that way that children do that is more about the swirling of thoughts in their brain than the desire to change the subject.

~ ~ ~

So I awoke this morning with sweet birthday wishes from Squink, who came to jump in bed with me and offered what may be the best birthday present a mother could have; The Birthday Snuggle… complete with singing and kisses on the nose.

A gentle quiet reminder of something that is very special.

We got ready, ate breakfast, and then opened the door.

And we had this most amazing sunrise greet us as we left our  home.

The sky was full of pinks, and blues and yellows and orange, with that kind of cloud cover that makes the colors ever so much more vibrant. I tried to take a picture from our front porch, to no avail. But Squink and I stoop looking at the sky being so grateful for such glory. I managed to get another picture that shows more of what I saw when stopped at a stop sign a few blocks from my home.

This is the best my phone camera could do.

I have to admit that when I saw it and was in such awe that I thanked God for such a beautiful birthday gift. I experienced something that felt like it was intended specifically for me and that could be shared with others. Which seems so completely selfish, but that is how I felt for a brief flash of time as I stood there.

Navigating life now is different. Complex. I am in a very different place from any other time in my life. I am really struggling with the whole diagnosis thing. I don’t know where to fit it in, I suppose.

I don’t know what to say. Am I a survivor? I mean, that size was under one millimeter… to say it was caught early is certainly true… but it is super micro early. My doctor told me in his thirty plus years of practice that he had only three patients that fit in this super early phase. The kind of phase where the only intervention is surgery. There is a kind of disbelief in that, for me anyway.

As I experience my body heal, I am struck by just how intense a process it actually is. I am constantly aware of my incision (can I even call it a scar yet, as it has not fully formed?). It is a feeling that is so constant that I am left to wonder if this will be my new normal, that in time I will adjust to the tight, sore, prickly, ache in my belly.

I keep asking what my lesson here, in the entirety of this situation, is and I have no idea. There is no concrete thought about what it is, what it might be, and perhaps most disappointing of all is that I don’t even know what it should be.

Though, now that I have written this down I wonder if that might not be it. A need to shed a need for guidance and lessons from things and circumstance. Which seems ridiculous to think now that I write THAT down.

I lead a very happy life. I am grateful that I am here, today, in this moment. That I am able to love the people I do love, that I can like the people that I do like, and if I dig in a little that I can even dislike the people I do dislike.

~ ~ ~

One of the stories that has stuck with me is a story about how Sandra Day O’Connor did not reveal that she was in the midst of a breast cancer diagnosis/treatment when she was nominated to SCOTUS. The reason, as I was told, was because there is such a misconception of the disease that she KNEW that if congress knew about it that she would not get the nomination. many people have assured me that this is a true story, but none of them were Justice O’Connor

This made me sad then, and even sadder now as I navigate a similar thought very different path. I don’t know if it is true, I have always wanted to ask her. I am even more especially curious now.

I applied for a significant position in an organization I belong to. I was denied the opportunity though, being told that my circumstances affected the decision not to interview me for the position.

I was public about the “circumstance” because I felt called to remind women that simple check-ups can and do save their lives. But that, caused me to not be considered for something (at least that is the reason they gave, and I have no reason to really doubt it but we do live in a complex world).

I am still very, very disappointed that I was ineligible to be interviewed. Part of me considers that I was discriminated against due to my diagnoses (which seems like it should be illegal, doesn’t it).

What this does really, is reinforce this feeling of “what” in this experience.

  • Some might say I was being punished by God. Something that I doubt, 
  • Others may say I am supposed to love life and be grateful. – I feel like that is a place where I was strongly at before and am strongly at now – I feel gratitude daily.
  • Others might say it is a consequence of a misspent youth. – possible, I suppose. But what isn’t?

I do try to navigate this whole situation moment by moment, though.

Perhaps it is a cacophony of lessons that are too numerous to reduce to just one big one.

Perhaps, it is just life and how life works.