Queen of my cancer domain

There is a certain nervousness and apprehension as I approach my oncology follow up visits. 

I know to expect the following;  a vaginal exam, a pap smear, and my scar gets a review. 

I never really thought I would ever blog about these things, but here I am talking all about my girly bits.

My oncology center has a pretty new office, it is fancy schmanzy. I was able to see their previous office space several years ago. I helped a colleague through their own diagnosis. The space has different kinds of patient rooms and this visit I got a room that I call a throne room. They have these modern chair-that-turns-in-to-an-exam-table-complete-with-stirrups-that-miraculously-appear things.

After being ushered in to the room by the nurse  I proclaimed that I was glad I got to get a throne room. I  sat down with royal aplomb, gestured grandly,  and proclaimed myself as queen of my own cancer.

This is the chair, with me in it… and yes, you can see my butt poking from behind that silly paper drape if you look hard enough:

Anyway, turns out that my abdomen is not lit up by my disco ball ovaries. 

My oncologist is incredible, there is a gentleness to him that is unseen in so many other physicians. All the Ob-gyn’s I know consider him their go-to guy for their patients with oncology needs. I understand why.

When he examines me, there is a certain gentleness. A real look at his handiwork not in how they reflect on him, but on how they are for the patient. If you are open to the idea of therapeutic touch, I would say this doctor was born with it. 

So, as I lay on that table-formerly-a-chair, I asked him what he had done with my ovaries. He explained that he had tied them down to a ligament. He followed up by explaining that they are about 3 cm lower than where they used to be. he added that they should continue to function as long as they normally would. My ovaries were not left to roll around. Nor were they hung up on my ribs like a disco ball.  

I told him my story was better. He laughed and said he thought so too.

Cancer patients tend to develop a kind of crush on their oncologists. I can totally see that. It is not the kind of crush where you feel love. It is the kind that comes from feeling gratitude, It is pretty amazing.

I am still reflecting a lot on gratitude. It is hard to properly express gratitude to people  in this experience. Gratitude, it seems, is my lesson that is still being developed in this experience.

On The Facebook today, I came across an essay on suffering and gratitude. There was something intense to ponder  in the message. And the message was made moreso when the essay ended with this message:

I am grateful for your hair, the beauty of your eyes, your way with words, your heart that always is ready to give, your willingness to grow, your willingness to not know, the way you garden, naked, early in the morning, your love of family, your love of wine, your love of Scrabble, your glass-half-full ways, your love for your son, your belief in God, your belief in the power of poetry, your belief in the power of love, your Catholic ways, your love of your mother, your love of Mother Divine, your pale white skin, your lips, your smile, the way you love your friends, the way you love. (Source)

It appears that little piece was about a woman named Adele. I believe Adele is pictured at the bottom of the page in source link. That part, though, touched on some of the things that people comment about me or that I feel about me. In some divine sense, I want to believe that I was meant to see it. And to relish this sisterhood I share with this woman named Adele.

Invincible summers and calculated acts of kindness

“My dear,
In the midst of hate, I found there was, within me, an invincible love.
In the midst of tears, I found there was, within me, an invincible smile.
In the midst of chaos, I found there was, within me, an invincible calm.
I realized, through it all, that…
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.

~ Albert Camus

It was late on December 20th, 2014 and I was still recovering from my surgery.   I read an email from my friend Gail in which she asked if the Junior League of Phoenix (JLP) would be interested in hosting a movie screening. Gail works at The Arizona Partnership for Immunization.

It was this movie screening:

I watched the trailer.

I called her to talk on the phone.

I pretty much told her that I didn’t know but I would find a way.  We talked about how I could manage this in my capacity as the member training committee chair and we came up with a plan. The next morning I sent out some emails to my Team Leader in the Junior League and my co-chair. Both were supportive.  Gail and I discussed venues and what options we had. We decided that my cousin, who is Lead pastor at Scottsdale First Church of the Nazarene, would be a good person to approach. So an email went to him. I received immediate replies and all were supportive. 

Here I am 2 months later. The JLP team lead I serve under, has allowed for this to become a bigger deal within the JLP.  More partnerships have developed and are included below.

Our goal is to provide one large movie screening with a panel that is targeting about 200 viewers. 

If you are local – please save the date:

Date:
Thursday, April 9th 2015

Location:
Scottsdale First Church of the Nazarene
2340 N Hayden Rd, Scottsdale, AZ 85257

Time:
 5:30 – 9:00 pm / Movie starts at approx 6:30

Tentative Agenda:
Sign in opens with a meet and greet: 5:30
Movie and topic is introduced and screened 6:30 
(movie is 80 minutes long)
Panel discussion at end of film
closing meet and greet

Community Partners:

Scottsdale First Church of the Nazarene

Junior League of Phoenix

Tapi

Arizona Oncology

AZ Department of Health Services

Genesis City

I am back – with some Calculated Acts Of Kindness (COAK)

Yes, I decided to  come back here. I figured out how to un-subcribe people and did so…

I did that because this chronicles my life for the last 10 years.. and a lot has happened.

But those ten yea

thank you deviantart

rs all had my Squink in them. And even when I did not mention him, it happened around him.

But it also feels like a new beginning and how wonderful that it coincides with the first day of Lent.

So, I am following after Kelli at AfricanKelli with a commitment to Calculated Acts of Kindness…

I will post updates on:

Flickr Pool

Instagram

Facebook

and of course HERE (and on my other site)!!!!

What a wonderful way to start

Peek-A-Boo – I can’t seeeeeeeeee you…..

Oh my, how many times did I play that game as a new mother…. There were countless delights in the delight and giggles of my newborn son. I loved watching my son take his turn,  cover his eyes, and then swiftly moving his hands away. Staring at me, wide eyed, with the expression of “Mom, I was here the whole time”, laughing as I pretended that I could not see him.

The idea is to learn object permanence.

My brother, when he was young, used to close his eyes when he wanted to be alone (no matter how many people were in the room with him). He was completely convinced (I believe) that if he could not see us, that we were no where near him.

People were and are always present to each other. This is true, even if you adopt some sort of frantic philosophy in which you would argue that everything is not real. That my brother was, in fact, alone and/or there was no one in front of my son when he had his eyes covered.

I thought about these times after I read this article  the other day.

I find humans to be fascinating, we are social beings. There must be some kind of thinking that has an application to technology and how we tend to act towards each other. I mean, why do we act so terribly when we can’t see the face of the other… trolls, for example, thrive on this, I would argue that they depend on it.

I’ve been told that gossip serves a crucial social role for us humans. Gossip moderates our social behaviour… and I think that it applies to this in a certain context. So, imagine if you will, how easy it would be to scold someone you know via text or email if you did not have to see them. One would put their scorn into a few words and be as clear, concise and I might argue brutal… after all we want to make sure the point gets across.

This message puts the other end of the social interaction on the defensive. It is more likely than not, that a series of texts or emails get exchanged with a defensive end and an aggressive end. For delicate social relationships, this is probably not the best way to go about communicating.

This is so hard for people like me who hate talking on the phone. I prefer a text, or an email. I tend to not even want to talk to people. I am an introvert.

This is a modern day reliance that tends to be abused. When I sit on a board or committee, I tend to default to this. I have noticed that feelings get hurt so much more quickly over text or email. I know that I have been on the hurt end. I know I have also been on the giving end…. though not usually in giving of a complaint, but in pursuing a conversation.

So, I ponder the reliance I myself have on technology to communicate my feelings. I am trying to move away from it. Of course, I have this (these, actually) blog(s), they are a public written communication. And my blog is also subject to vitriol and complaint.

Text, email, and even blogs are devoid of any kind of social interaction. When we speak we can at the very least know that the subtle intonations are being heard (even if misheard). When we write, sarcasm doesn’t usually translate. When we speak, there is a possibility we can react to body language. When we text, we don’t.

So much is inferred through sight and hearing. I can see if the person I am speaking to has outward signs of having a bad day. I can hear if someone is making a joke. And though people miss these cues often when in person or over the phone, we are less likely to miss them than if we text.

In the days of “The FaceBook”, Twitter, email, text, instant message… we have lost the physical interface.
If you consider things like Facebook, Twitter, or even blogs you can see  how there is a modicum of backlash. Will we learn how to do this better? 

When will learn to be more gentle with one another? 

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. 

"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.

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

Untie the haggis and why wear pants – 40DOW – Day 1

I spent yesterday at the hospital. The hospital my son was born in. The hospital my nephews were born in. The hospital my half-siblings were born in… and some other some such relatives.

This time it was for me though, I had to get some girly things taken care of. Which reminds me, ladies… get your check ups.

Actually, that reminder is super good place to start… because that is where this journey started.

A friend posted about getting a cancer diagnosis on Facebook, and what a crazy ride it had been. I read her post, with tears in my eyes and realized it had been a few years since I had done mine.

Actually, it was more than a few years. That is what I found out when I called the doctor to schedule an appointment.

Not a smart move on my end.  Things like DES are a part of my history. I really should have known better than to let so much time lapse, but I did.

My luck is that I went in time. But I needed some work. and I got it.

So ladies, get checked. Men, make damn sure the women you like (even just a little but whom you know well enough to enquire about their vaginal health) get their lady bits checked. Regularly.

But I had fun at the hospital. If such a thing can be fun.

I hate IV’s… hate them, hate them, hate them!

I invoked my grandmother by going home in a muumuu that my aunt had bought for me… a gorgeous caftan of multiple colors and GLITTER!

I can’t even begin to describe its awesomeness.

I took pictures for as much as I could. (for the record, I love selfies, I love looking at them and I am OK with taking them and I am especially fond of what I laughingly call “we-we’s” but most people refer to as “groupies”.

My favorite we-we. ever. but only sorta, because Squink isn’t in it.

For some reason we began referring to my cervix as my haggis and made a plethora of jokes about them that involved playing bagpipes and other such hilarity that probably only seems funny if you were a part of the conversation. The whole haggis thing was compounded when I get home and after much sleeping and woozying find I got an amazon email that was, ironically, all about haggis.

An email about haggis.

My arm bands had the colors of the flag of the countries I was born and grew up in… in spite of my aunt insisting my blue was really Greece (it isn’t).

Amarillo, azul, y rojo (and NOT GREECE) and featured on my Instagram account

My aunt, brother, and husband picked up Squink and so he was there when I got out of recovery…

I can’t tell you how much joy I felt in knowing that his little body was there waiting for me. And when he saw me he was sweet and gentle and it was beautiful.

And then I found the glitter from the muumuu had managed to get on everyone and you know life is good when you are glitter bombed. Right?

Excited that a caftan experience awaits at the end of this!

Why wear pants when you can wear a muumuu? 

~ Beth Ditto

It is that time again – 40 days of writing to resume again

So, I belong to a writing group on “The Facebook” called 40 Days of writing.

It is set to begin on October 1st and I am facing this challenge with total and complete mixed emotions.

Yes, I need to get back in the habit, I have left off and forced myself to put stuff down that feels exceptionally sub-par and fluffy.

I am faced with another challenge though, this one starts the day after I get to go through surgery.

I am tempted to write about that experience, but it seems so stupid in the age of cyber stalking and such other human on human atrocities. Someone, I am sure, will use it against me.

Being publicly vulnerable sucks.

Of course, I should get back to writing “that book”, but I am still trying to get past someone calling it “too porny”. This happened around the last 40 days of writing thing and it essentially shut me down, except for a sad, feeble attempt at a modern day revisit of one of the Arthurian Legends.

The great thing about 40 Days of Writing is getting to read what others post, I love to read the stories and things they put out, it often inspires and there is something about getting to see into their lives that makes me feel better about the world… so there is that,

The thing is… that I look at these pieces of themselves that they put out and am moved and touched and want to return those gifts with quality stories of my own.

I tend to be lazy, and detail is something that is just so hard to me. Breaking down important descriptions is the last thing on my mind. It makes for weird stories, stories that are not quite worthy of the ones I am reading.

Practice. I suppose it is about practice… and returning the gifts of these stories with my “practicing” just seems so lame. It is, however, the only thing I can do at this point.

OK, that all reads as so negative, but it is more than that… what are the other positives?

I do know what I don’t want to write:

• How to’s,  (the ones I would write might be too strange; how to shrink a head?)
• Self-help directives (who am I to tell anyone how to save themselves)
• Recipes (I don’t follow them, so I should not write them)

I guess I will keep trying to plug away at this writing thing…

facebook memes replicated

Somehow, I see Facebook as more fleeting than a blog, that the Gran Guru of all things Technical (Google) will not remove this though the popularity of Facebook may wane… and there is something in this gratitude meme that I don’t really want to lose~ so I post my responses here.

1) I am exceptionally grateful for a loving and supportive family. A mother that taught me about the importance of sacrifice through action, my aunt that taught me to see the world in so many colors, a grandmother that formed the basis for being curious about the world. A brother who has always rooted for the underdog. Nephews who delight me with the men they are becoming. A husband (Christoph) who’s skill at navigating my lesser qualities humbles and strengthens me. Squink needs no explanation as to how profoundly he has filled my heart and delights me every day.

2) I am grateful for a legacy of ancestors that include women getting a college education when that was not the norm with areas of interest that included education, the arts, science and philosophy. I am grateful to the men who brought their skills and stood up for the underserved. I am grateful for a grandfather who was an amazing engineer and be it for better or worse; his work on the dams, roads, bridges, developments and mines of Arizona helped to make it a place I am deeply connected to. My other grandfather who taught me how to fish and shoot a rifle, identifying my dominant eye at a young age to help ensure an accuracy that I am proud of. I am grateful for the pioneers, the cowboys, and the cowgirls that helped formed the state I call home.

3) I am grateful that I was raised with a distinct worldview. That I was raised in countries that encouraged me to see the world as a magical place with castles and high snow-caped mountains surrounded by patchwork fields that gifted us with delightful nutritious food. I am grateful that my father was able to hand me the lands we lived in, that he taught me how to ride horses on those mountains and showed me that life is as brutal as it is delightful.

4) “The Facebook”, as frustrating and annoying as it can be, I am eternally grateful that it brought back people into my life from far away lands that I did not think I could connect with; Doralice, Alexis, Jeff, Beth, Erica, Ingrid (even if you were just a baby), Ladna, and Jonathon. I have so many great, wonderful memories of being a kid in Quito with all of you that there is a comfort in knowing that you are still out there and for that, I am grateful.

5) My dear wonderful cousin Aimee; it is a blend of things like her beauty, kindness and grace that gave me a gift that I didn’t even know I wanted. She brought me so much through just loving me unconditionally that I can’t even begin to thank her for the gift of her friendship that is bound within the blood ties we share. I am grateful for all the gifts she is to me.

6) I am grateful for friends that meet up and chat and support each other. Gentle moments after which I am always delighting in the glow of their kindness and generosity.

7) Extremely grateful that I have access to healthcare and that I am safe in the knowledge that when a day includes the word biopsy that I know that I can get the care that I want and need. I follow that with the gratitude that I have physicians and nurses that I deeply respect and can discuss all my options and possible scenarios. That this is something that many people do not have access to in the way that I do, is ever so humbling.

8) I am grateful that I know how to read and that I can read things both beautiful and moving, hard and direct, subtle and desperate. Through this ability I was able to read this article this morning (http://aeon.co/magazine/culture/olivia-laing-me-lonely-in-manhattan/ ) and I was struck by how that article wrote about loneliness; I can’t image what that was really like, something so dark that it removes you from a feeling of having a place wherever you are. and because reading that I was able to better understand how I am so very privileged to know that I am loved and not alone.

9) I am grateful that I can watch my son jump and play. There is a beauty in watching your children (and even pets) do those things that rings of a certain freedom that adulthood seems to reign in… though perhaps the thing gained through adulthood is that you get to watch it and be moved by it so deeply.