Wednesday, December 31, 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. 


Thursday, December 25, 2014

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?

Thursday, December 18, 2014

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.

Wednesday, December 17, 2014

"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.






Friday, December 12, 2014

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.





Thursday, December 11, 2014

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

Friday, December 05, 2014

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.



Tuesday, December 02, 2014

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.



Friday, November 21, 2014

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!

Sunday, October 26, 2014

Day 26 - 40 days of writing - oh, the indignities…

Aside from the obvious, which is having a shocking number of medical personnel have access and *ahem* viewing rights to my girly bits…

There is also this:


Of all things, this is called "THE BOWEL PREP" and it merits all caps because it's all about prepping my bowels.

And that's just BOWEL PREPPING... For surgery… that is NOT on my bowels.

Puchicas


To make matters ever so slightly more dramatic, I decided to delay my last ingestion of solid food for a while because my breakfast was a bit on the pitiful side when one considers that I won't get to eat until fucking Tuesday (pardon my French, but it just seems cruel to wait that long when gluttony is my favorite sin). THEN (all caps for continued dramatic effect) I chose McDonalds (of all things wrong and awful on this planet) because I didn't want to delay it too much (as I was violating a strict interpretation of my pre-op orders already) and I was in a small town but needed to head home and there was no way in hell I was taking magnesium citrate at the start of a 90 minute road trip because the thought  of forced roadside stops with or without the benefit of a toilet (and more importantly soft toilet paper) seemed like torture.

So, I waited until I was within a 20 minute drive home and drank my cherry flavored liquid (from hell).

That being said, the version of "BOWEL PREP" that I get to do for this operation is so much nicer than what I got to do for my colonoscopy.

Small blessings.

Now please excuse me, I need to powder my nose.

Saturday, October 25, 2014

Day 25 - 40 days of writing - small things and gentleness

It is amazingly easy for me to love.

Being loved is ever so much harder.

Emails, texts, phone calls and conversations with loving support.

Prayers, whispers, meditations, sending of light, energy, vibes… all in my name.

A bouquet of flowers at my doorway.


A tin of gingerbread cookies

I sit in a whirlwind of these expressions of love and am so humbled.

It's hard, I am not one to depend on the kindnesses of others.

I was chatting with my mentor, an allomother. 


Strangely, it is (at this moment) much easier to let go, to give in to this process. Gratitude is just so much more deeply felt, I find that in order to respect it, I need to let go of my deeply ingrained habits of not wanting to inconvenience people I care about.

So, this is about a lot of letting go...

 and wearing my pj's for a while.



Wednesday, October 22, 2014

Day 22 - 40 days of writing - wings

“ You strode deeper and deeper
into the world,
determined to do
the only thing you could do,
determined to save
the only life you could save.”
~ Mary Oliver, from "The Journey", in Dream Work (1986)


So very true. that poem above.

A poem. Ironic, isn't it?

The waiting is over. 

My surgery is scheduled. 

I really like my oncologist. He is a gentle man with a mysterious air of steel reserves that make letting him work with my choices a dream.

I have power over this process, power that the oncologist has given me. This is special.

I have received so many gentle gifts in the words of people I know.

It is so hard to be humble when one feels so betrayed by their body.

I recall the days when I worked to help get Arizona to use the funds allowed to states through the Breast and Cervical Cancer Prevention and Treatment Act of 2000. There was a community lobby day where people went to speak to legislators about the importance of these services.  One of our FEMALE state legislators listened to the impassioned plea of several women who were lobbying that day, many of whom were cancer survivors. The FEMALE (in caps because I am still incredulous) told them that she was unable to support the legislation they were requesting for her to support because "only women who are loose and get abortions will get breast and cervical cancer".

Thankfully, we were able to pass this locally. 

Like my life right now, there is nothing coherent about this post. 



The Bloggess pinned it to her Pinterest account

I miss my old life. I miss the tendency towards being boldly dangerous and striving to do noble things. I miss my light, my ability to frolic. I miss being fanciful, and feeling beautiful, and also of being fearless. 

I miss my wings.


Sunday, October 19, 2014

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.




Saturday, October 18, 2014

Day 17 - 40 days of writing - procrastination, anger, and trying to let go

I have had my paperwork to fill out for my upcoming oncology appointment for over a week.

It was on the floor for several days, then I put it in my work bag to take and complete on a break, but it still is in there. It is not filled out.

I have to fill it out this weekend. 

I want to avoid this whole thing. It is all encompassing. It permeates so many things.

***

An email sent to explain why I have to turn over some of my volunteer efforts and how I would like to see them handled gets forwarded without thought to the information contained within. People   who see that email decide it is OK to come up to me and tell me the email has been forward and mentions of things like "your condition" and "your health issues" permeate the conversation that she thinks is acceptable to have in front of my son. 

I want to know why everyone thinks it is appropriate to think it is a good think to talk about this in front of a child. 

Others have done this, talking about my cancer in front of my son.

And they can frolic away thinking they have been so good and noble and all because they got to tell me they are concerned while I am left with a concerned son, who has since started throwing up at school (again)... something I believe is tied to stress and concern.

And I want to yell at these well meaning but stupid people; "Why the fuck have you decided you can make this more complicated for me and then think you are so dammed just and gracious?".

They are so blissfully unaware. I have to let go but as I deal with a son who I am trying to convince that I will be fine and nothing is wrong and because he dwells in silence from not understanding what is going on has no idea of what questions he needs to ask and I can't know what I need to address.

I don't know how to tell these people that they have been wrong in how they handled this. I am not even sure that I should. I know that if I would do something so thoughtless that I would want to know. but I don't know how to be gentle about it.

I wonder if this is about displacing the anger at the way my body has betrayed me towards others. It is hard, and confusing, and ever so extremely frustrating.


I recognize it goes both ways, allowing what will continue I mean. Do I allow myself to dwell in my reactions or do I allow them a lesson learned so that they can learn from their experiences. 

Who needs the most of my energy?



How do I travel this road gently and with grace?


Friday, October 17, 2014

Day 16 - 40 days of writing - cosmos and faith

A conversation I had about faith.

Link


This assignment is due by Sunday night, but I certainly hope to have a nice “dent” in its completion by Friday, if possible. I truly appreciate your help on this. Would you mind telling me your age, where you are from, and if you followed your worldview since your youth or did something influence a change?

I am 45 years old. I was born in Bogota, Colombia to American parents, though we did not often socialize with other expatriates. I also lived in Spain, Ecuador, and Mexico before moving to the USA.  I think it was this experience that led me to my world view. I am an agnostic, but specifically a theistic one; meaning I believe in a supreme power/being, I just feel that knowing who or what that is lies outside of the purview of human understanding... and since faith is outside of the realm of scientific understanding I do not hold it to the rigors of scientific research.  I do however, approach my faith with a deep curiosity and search for more knowledge and insight.
 
The required elements are outlined below:

1)      For this assignment, you will interview two people with different worldviews. One will have the Christian worldview and the other will be one of the following:
a)      Atheist/Naturalist
b)      Secular Humanism
c)      Pantheistic
d)     New Age

I do not consider myself to be any of these, I consider myself to be a theistic agnostic. 


2)       Include in your interview, the following prompts:
a)      What does it mean to be human?

I see humans as part of a cosmos. We are on this planet/universe and part of a whole ecosystem of things that evolve and works both for and against each other.  I am seeking to understand why there is a need to see how we separate humans from the rest of living things as I am not convinced this is an appropriate means of thought.  I tend to eschew thinking that humans are any more special that other living beings, but get uncomfortable at the use of the word special here... perhaps it might be a word like meaningful. I think that since we seem to have things that we call "reason" and "thought" that using those involves a certain responsibility (and should add that each living organism has the responsibility to act according to its make-up; so a cell must do what cells do and a fish must do what fish do and thus a human must do what a human does).       


b)      What happens after death?

As I assume that this questions seeks to discover my thoughts on the concept of an after life, I would have to say that I don't know, but I am OK with this uncertainty. I tend towards falling back on certain principles in the hard sciences in that our afterlife continues in forms of energy, quarks and strings. I do know that ancestors carry on an important legacy and perhaps that their roles and stories being carried down in various forms (traditions for example) might be the most beautiful thing that happens after death. 


c)      Elaborate on who Jesus Christ is according to your worldview.

He was one in a series of people who have served as messengers regarding valuable lesson in human cooperation. 


d)     How does your worldview deal with the concepts of evil and suffering in the world?

Nature is cruel and has no remorse. I don't think there is evil. Things that tend to be associated with evil in terms of humans are aspects of human behavior. I think that this is where things like religion are important (I tend to tell people that I am religious and not spiritual) as they serve as guides to encourage cooperative behavior and perhaps to curb tendencies that might not be as socially productive.


Thank you again for your time!!

No, problem. It was very delightful trying to get my thoughts on paper though I do feel like I did not do them justice. 


Thursday, October 16, 2014

Day 15 - 40 Days of Writing - Poetry

"but in the end

if we're lucky
we'll have the love 
of a precious few
maybe the ability to stare
death in the eye"

I am not shy to say that I loathe / hate / dislike  am ambivalent about poetry. OK, OK... Most of it. I love Yeats, and Keats. And Robert Burns. and a few isolated bits and pieces from others... I love the poems that Doralice puts on her blog... they are pretty [insert expletive] awesome... but really not much more. I only own poetry books that people give me. I have never purchased a book of poems.

If you navigate to my previous posts from 2011 you will see my desperate and unsuccessful attempt to try and find the magic in poetry that so many postulate that it has... (the posts start with "My favorite Line is.." if you are curious).

I even took a Coursera course to try and get it, figuring that I was reading them wrong or something along those lines. But, I found so much of it to be sad and pretentious and boring and far too much work to enjoy.

Maybe it is that I prefer Hemingway like poets, meaning that they use simple images, words, phrases, and images that make conjuring up the magic story that poetry can be, so seamless and easy.


Is this really true?

Anyway, that line above appeared in my feed on "The Facebook". 

The whole poem can be found here.

So, I know now that what it is is that I am not a fan of most of the post modern poetry, I love the romantics, the ones who use and understand words with so much more grace, who don't try to fray you out of feeling a place in our world, I don't like the ones that push you into spending hours trying to decode what in the hell they mean, that make you feel like you are sitting an a very uncomfortable perch as you try to find meaning in them, that seem haughty and petulant with words meant to tease the reader. Those, I find difficult. I can't read them without wanting to throw the book they are written in across the room.

I don't need a poem to make me feel good, I can be pushed to sadness, and anger, and any other emotion but I need to connect to the words. I fight bitterly to do that in those times when I have sought to read poetry.

But that makes me ask, what makes you tick when it comes to poetry? What poems do you love? what poets have inspired you enough to purchase a book of their poems? If you write poetry, what inspires you? Do you feel ridiculous (exposed, vulnerable) when you do?

I am just trying to understand.

Wednesday, October 15, 2014

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.

Monday, October 13, 2014

Day thirteen - 40 Days of Writing - Obsession

I loved the way Obsession for Men smelled (when I was a teenager).

Yesterday, I obsessively read my pathology report. And by obsessively I mean that I read it repeatedly for a 5 or 6 hour stretch of time. I read this two page report and felt so much that it was as if my life depended on it. I would focus on one part of it, set it down, ponder it, and then come back to it and re-read that section. I would then set it down. Then pick it up and read the whole thing again. Focus on another section and repeat this process all while watching the utterly mindless and unbelievably mind-numbing Vampire Diaries on Netflix as background noise. 

Thankfully, I am done. I think. I don't really want to read it any more. My medical school stint reared its virtual head and I gained that understanding that I was looking for, picturing in my head the sizes of the different samples, trying to picture them as I read the descriptions. These three dimensional images rotating in my brain and looking at them from all directions. My brain would form these hologram like images as I studied each section of the report and the three samples in question and I could twist them to try to better understand the height and width and depth in hi-fidelity color based on the descriptions of the stains they used. My brain hadn't thought this way for a while, it was both exhilarating and exhausting.... and all while not focusing on the screaming absence of the words "clear and present margins" and breathing deeply and heavily at the places that stated that the "extend ... to the margin". Wondering then, how much further they could have gone in order for me to be able to read those words I kept hoping to find.


That those two black and white pages that my GYN faxed to me contain the key information about what is going to happen to my life for the next few months (years, too) is a bit mind blowing. It is like the home pregnancy test I took when I was pregnant with Squink, something so small serves as such a huge symbol of GIGANTIC changes that are about to come.

It just seems, in a weird way, that these symbols of huge life changing moments should be different somehow. Maybe. It is also just amazing how simple things reveal so much. I wonder what the pathology report would look like if I painted it, applied rhinestones... or gave it a tiara?

As I woke up today and wondered what inspiration might come my way in terms of what to write for this round of 40 Days Of Writing... all while pondering how I spent my day yesterday - and hoping that I wouldn't be so stuck on the diagnosis and the "C" word...  when, I thought that part of this process of managing a diagnosis like this is that there is an element (or time period) of obsessing about it. Trying to get into its skin, wearing it and figuring it out... especially in those times of waiting (which frankly sucks the most of anything so far).

It all makes perfect sense, in a way. Today is another day.





Sunday, October 12, 2014

Day 12 - 40 days of writing - managing vulnerability

Vulnerable

I am feeling so very vulnerable.


vulnerable
/ˈvʌlnərəbəl/
adjective 
1. capable of being physically or emotionally wounded or hurt
2. open to temptation, persuasion, censure, etc
3. liable or exposed to disease, disaster, etc



Let me be very clear. I don't do vulnerable. Rather, I don't like to do vulnerable myself. Support vulnerable I am pretty good at. 

This is vulnerable:




I am not that.

But yet, I feel so exposed.

I suppose there is this thing about letting go. My whole life I have loved fiercely, family, friends, the underserved among so many other things. And there is something, with a couple of rare exceptions, that is very one sided. In most of the cases (outside of family) love not expected to be reciprocated. In terms of friends; I can love them as much as I need to but since I know how variances are in the complexities of human relationships, I haven't really expected or even needed them to love me back.

Until now, I suppose.

I received an email from someone I think is wonderful and call a very dear friend and in her email she said she had called me a best friend. Oh, I was struck by that. I hadn't known that she had classified me in that category, and I was deeply, deeply touched and very grateful. I am better at the subtleties of friendships with men, and not so good at them with a grand preponderance of women.

But, it feels so vulnerable to allow oneself to be loved in this kind of situation. At least, for me, in terms of relationships outside of marriage and genetics.

As an aside, I made a variation of this Ayurvedic Dal recipe, it is a family favorite that is rich and complex in flavor but so hearty and filling. I even quadrupled the basic recipe (only one can of coconut soup, and some other changes). The way the currants plump up and complement the curry power is like a bit of food heaven.

Normally, I make brown rice but for some reason I bought some jasmine rice. In an attempt to make rice Ecuadorean style I followed the way Carloti (our live in maid/nanny) showed me...something like this recipe, but letting it sit longer so you get a crispy bottom.


There is so much comfort in comfort food.

Day 11 - 40 Days of Writing - ten years ago my cervix failed me too

I realized that I have been blogging for 10 years, starting around this same time of year. There are earlier posts but those were after the fact. The linked one was my first and the one before it was an email I sent to friends on that day (he day I retroactively published it).

The huge irony is that it was about my cervix as well, granted in that case I also gained a son... instead of in this case where it is about losing my uterus.

It is ironic, I suppose... to have started this blog because I was in a dark place. Bed rest, as romantic as it may sound, was amazingly lonely and dark.

And now, these ten years later (almost to the day) coming here and writing again from another dark place, that has a very different feel to it... a deeper kind of vulnerability, perhaps.


Jean Jacques Henner - Solitude




Saturday, October 11, 2014

Day 10 - 40DOW - tired

I'm tired.

I am lucky.

But, I'm tired.

Part of me feels like I should want to scream.

But, I feel tired.

Another part of me wants to curl up and sleep through this... wake me up when it's over.

I got my paperwork for the oncologist and I left it sitting on the floor by my bed.

CONQUER
CANCER

It reads.



I am curled up on my bed staring at it. 

It looks so optimistic.

Wondering if I'll get turned away because I don't have any "films" to bring with me, just my sad little 2 page pathology report.

Are the 18 days I had to wait going to get pushed to more.

This waiting is painful.

I'm trying to be patient.

And grateful.

And I am...

Really.

The sweet notes and efforts are so unbelievably touching.

But I'm also angry.

At myself.

And scared.

For my loved ones.

And tired.

So very, very, tired.

Thursday, October 09, 2014

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.