Day 1 - 40DOW - viewpoints on vaccines

This morning was a struggle. 

I am trying my damnedest to get this to happen:

If you can RSVP for a Phoenix event click here.

I struggle because I want it to be successful 

The team I am working with has been UNBELIEVABLY supportive... but it is so hard to get buy in from other folks.

I struggle with that.

But it, my sense of struggling, may have been that I had an unscheduled visit to my oncologist today. 

Bleeding.

Something I am not supposed to be doing at this point.

So I went in and saw my doctors nurse practitioner. Who performed a biopsy. 

I have had biopsies before, in that area...  it hurt like a motherf*&%#r. 

Even though she told me that it was my job to assume it was due to scar tissue, she also told me it was her job to rule out recurrence. She reassured me that it looked like granulation (BTW - don't Google it).

What makes this situation even crazier is that the woman who did my biopsy is also a woman who will be on the panel for the movie screening.

Following up on the fact that I am helping to host a conversation about a preventable cancer
and that one of the panelists will have seen my girly-bits, I just got word who a second panelist will be and.... guess what??????

She has seen my girly bits too.

She was there when my son was born, as in the room... standing right between my husband and my mother.

So, I am trying to find the beauty of all of this. So, "this" being a weird place in my life (waiting for biopsy results) the week before I am helping host an event. The event which happens to be about something that most likely got me into the biopsy situation in the first place.

Anyway, the big shift for me has been to try and be kinder, gentler, more gracious... and yet stay my own person. Hard to do when you are in pain.

I lay there waiting for the biopsy, pretending to be under a fancy kitchen heat lamp

The biopsy was really painful, it still hurts as I type this some 12 hours later.

I still have so much to be grateful for, But it is kind of nerve wracking to be in my position, again… you know, waiting for results. Not the most fun place to be.

Anyway, after my ridiculously painful “procedure” I yelled out “fuck, that hurts” and immediately apologized and lay on the exam table, in tears, for a while. The nurse practitioner who took the biopsy was so very kind and seemed very distressed by my reaction.

I was pretty shocked by it too. It was, however, really painful. I have had biopsies of my girly bits before, without any numbing agent, and it was nothing like this.

At one point, during the second “grab” for tissue I screamed out “oh fuck that hurts”, and then immediately apologized. I am generally not one to curse much… I was embarrassed.

I lay on that exam table, tears streaming down my face, trying to get back to a normal breathing, staring at the bright light above me wishing there was something like a rainbow pooping unicorn to look at…

The nurse practitioner held my hand, asked me how I was feeling, helped me get some of my ibuprofen and drink it down. She seemed very concerned. All very kind considering that she had just learned she would be speaking at the HPV movie thing and that I was involved.

After my breathing got back to normal and the tears stopped falling down my face, she told me to lay there as long as I needed. She, and the other NP with her, quietly left the room. I lay on that exam table, and the tears came back.

It was a pity party I suppose. I lay there crying and trying to remember to be thankful that this was an experience in which I had had tremendous luck. No chemo. No radiation. a tumor the size of a grain of salt.

I lay there looking at the light above me. Trying to make it something more than just a light, making a distraction from the pain in my internal surgical site and the pain in my heart.

My heart did hurt, I had a vaccine preventable disease.

Let me say that again, I was diagnosed with a vaccine preventable disease.

One that would have prevented everything, a sub-total hysterectomy, worry, agony… and today’s darn biopsy.

It is a vaccine preventable disease.

Granted, I was born before this miracle vaccine was developed. But it is a vaccine preventable disease.

And as I ran through a list of people I do not particularly care for, not one of them and not one of their children were eligible for my wanting them to suffer what I had suffered through, I AM suffering through.

Vaccinate your children. In some cases yourself. Your boys. Your girls. This alternative is not fun. not fun at all. The HPV vaccine is good for kids aged 9 to adults aged 26.

It is a vaccine preventable disease.

..

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

Love, American style

Do you remember that TV Show?

 I mean what is not to love about a show that depicts comedic American love stories using a flugelhorn to highlight it? It made silly out to be the root of romantic love.

I actually was only privy to summer re-runs when we would visit the US, but growing up overseas lent itself to think of America as some sort of different place, where EVERYTHING happened differently. That would include love.

 Aside from my childishly absurd notions that Americans had a different kind of love from elsewhere in the world… I have always been fascinated by this “emotion”, love.

 Of course, I am not the first. Those dead old white dudes (the Greek philosophers) did a pretty good job at trying to define it. But in all my years pondering the whole notion, I felt like they had missed something. Of course, this depends on who you listen to… but in general there are four Greek words for love… though some claim that there are six words.

Source

But the notion of love has always been interesting. There was a post in the New York Times that struck a chord. The idea that love can be induced in a clinical setting with a clinical method seemed intriguing.

 As I pondered the idea of being able to make two people fall in love, I wondered if this “test” was more about being vulnerable and honest rather than that there was a method to allow a couple to fall in love… I mean, that I was curious about what these questions would do outside of a “couple” type setting — what would happen if a parent and child followed the regimen, for example. Surely love was dependent on certain pre-sets. A willingness to fall in love, an attraction to the other individual at its root (which begs another question on attraction identity could this method allow gay people of opposite sexes to fall in love, for example), and even the mood at the time of the “experiement”.

 So, in a fit of my orneriness and willingness to buck systems and not follow “protocols” I decided to ask my husband and son the first set of questions.

 It was interesting. I learned things about each of them I never would have imagined, though nothing so significant that it induced a stronger feeling of love or something of that nature. However, it was a nice conversation and no one seemed bothered by the questions. 

I stopped after the first set of the questions in part because I had asked them in the car as we were on a family errand and the errand had come to a close, but also to think about how that portion had gone… plus, the second set includes a question about how you feel about your mother and that is an interesting question to ask a ten year old son (I would need to adapt the question in terms of intent, but how to capture that same essence… I mean, mothers have a pretty profound role in our lives for the bad or the good).

 So, it seems (at least on the surface) as if those studies tend to focus on fostering the eros end of a love spectrum, but since I seem to see that it is about being willing to be vulnerable that there should be more cross-love application… meaning it could create something in maternal our wifely love as well. 

I have yet to try the 4 minute staring part of the experiment, but I will. 

Though it reminds me of a boyfriend I had in college that asked me to do that with him, stare into each-others eyes for a few minutes, and it seemed too intense to try at that time… especially since I hated being looked at in those years (think bangs over the face) and would not have that kind of protection. I would have felt too vulnerable.

 However, and perhaps this is the thing I have sensed was missing — its that for all these words describing different kinds of love, and for all these questions to help one fall in love… isn’t there one word, one thing, at the root of each of them that crosses all these definitions and actions and if so, what is that? What causes all of these things to be classified under the word love.

 What does that mean for love?

Revisiting 7 and then 8 - and perhaps a dash on 9 - Find the Beautiful

Revisiting 7

I suppose my last post was a bit premature, though it was true. It is amazing how something gentle can shift everything, even if it is only temporary.

After my post, I went to a meeting for an organization I belong to. I expected to get lots of hugs and inquiries about my health and my status. I was looking forward to thanking people in person for their kindness, but felt shy about the possible attention.

The hugs were nice, the kind words and gestures were appreciated. I was glad to have gone and it was not as much of a burden to my shy side as I thought it might be,

But at the end, as I was walking away.  One of the friends who was there often for me asked me how I was and I replied with my usual. I am good, lots to be thankful for, one day at a time. She grabbed my arm and said lets sit and tell me what you mean by this one day at a time thing? 

I was stunned, she had latched on the the subtle nuance of such an expression and knew that my words were far cheerier than I felt. 

So we sat down, and I tried to explain that navigating the whole thing is complex. Yes, I fully see that there is so much that is good but that there is still the tough that needs to be dealt with. Being told you have cancer is more complex that I had thought, especially given the provisions that no chemo or radiation is needed, like those somehow would allow (key word here is allow)  someone to feel like shit. Please don't think I am trying to diminish chemo or radiation and that people who have to go through that are somehow exception in some regard... because they actually are exception. What I feel like I am missing is permission to grieve this process and that my grieving is allowed to be more than just sad.  After I feebly tried to communicate these ideas to her, I just looked at the hands in my lap and said, I want to be allowed my pity party, I just don't know how.

She touched my arm and said you are allowed a pity party and I want to be invited, lets go get some wine together soon.

It was so beautiful being allowed to feel this way instead of being held to strict gratitude. My heart filled with something, I would hope it was grace. 

I am not sure she knew what I was talking about or understood what I was trying to say, but she asked and then listened... holy moly... what a gift. She asked, she allowed me to tell her something closer to the truth about how I am feeling, In a world dependent on daily platitudes ("How are you?" - "I am OK") it was mind altering to pass that realm and move in to more of the brutal truth.

It is part of the dynamic between celebrating that I don't need chemo or radiation or that my tumor was so freakishly small AND the whole truth in that it was fucking cancer and it robbed me of some things that I held dear. I am grieving.

I don't think I am headed to deterioration. I know I will be fine, but this is a part of what has happened and is happening to me. I own it. 

“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.”  ~ William Shakespeare

Then 8

After the sincere gesture of my dear friend, I felt more lighthearted yesterday. It was a busy day, work with extra duties, rush to help Squink finish his homework, a school meeting for an exchange program, and cub scouts.

I was too busy to notice much more than the heaviness of my surgery site.

A dash of 9

We all woke up early, and in good moods. I even served Squink some oatmeal and let him eat it in bed. On my way to the kitchen, I noticed how amazingly pretty my orchid plant was. 

It was beautiful. 

Squink was beautiful. 

My family was beautiful. And somehow everything else seemed less important.

Find the beautiful 1 - 4

1. Having my mother, brother, and nephews over for a dinner of Wiener Schnitzel.


2.  A gentle and quiet day in bed, watching Netflix and having my husband make some more surprise Wiener Schnitzel for lunch.

Some Wiener Schnitzel being pan fried (photo stolen from Schatzy's "The Facebook" page" - Thank you Schatz

3. Seeing my mom for dinner, drinking a strong margarita with her. Laughing.

4. Getting my first test results back and having them be normal.  

NORMAL!!!!!!!!!!

Dinner with a group of girl-friends. Coming home to a fire in our fireplace.

The fireplace in our living room

“Think of all the beauty still left around you and be happy.” ~ Anne Frank 

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. 

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.

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!

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"

~ Richard Vargas

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.

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.

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.

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.

Day 8 - 40DOW - gratitude

I've been sick the past few days. Fever and runny nose, you know that route, right? 

The thing is that when you're one week post op, you shouldn't take risks, especially as I move on. Couple this with a change is what I will call discharge. I called my super awesome GYN. He had me come in to make sure everything was ok.

He was not with a patient when I walked into the back office area. And he must have seen me stepping on the scale. I heard him say, the good news is that you look good. I smiled and told him that I was indeed feeling better, but we had different ideas on what good meant. We laughed. He came over and said that he was really glad I called, that most patients would just dismiss the fever as being the cold, and that he was really, really glad I called.

When he came in to see me, I got to ask the big pressing question in my head which, ironically has nothing to do with cancer.

Can we take out that IUD you fought so hard to preserve at my last biopsy, and if you do, can I keep it?

When I go back next week we will remove my IUD and I will get to keep it. I figure that since I actually kept my cerclage (it is a link to a link, so if you don't want to see the knot that held me shut, you don't have to click all the way through and just stop at my picture of Squink) that I wanted to keep my IUD as well. Symbols, if you will, of the two times my cervix failed me... or rather, of when we failed each other.

This exchange actually led to a very interesting discussion of complementary medicine. I really have a wonderful gyn.

So, gratitude... yes. Aside from whomever is coming to see this blog (and it averages about 1 person per post (which may be me since I am writing this) I haven't really told many people in the grand scheme of things. I have told my family, not all of them just the close and a few extended (a couple of cousins, though not all... I suppose I should do that tonight... though if truth be told the cousins I haven't told are part of the group that thought letting me know that my grandmother had passed away via a public Facebook post was appropriate... so, I figured I could return the favor in some way). 

Anyway, I sent out a bcc email to some folks who mean the world to me and who did not know. While I did not hear back from everyone I emailed, I was delighted with who did respond and what they said. I did send it out to a few males, I heard back from two. That was a surprise, they wrote these sweet gentle notes and considering that they are not sweet gentle men, I was touched. 

I also told my fellow board members of an agency I serve on the board for, they were amazing and supportive. One bought me what she called her Catholic cancer kit; a statuette and booklets/cards of Saint Peregrine, some chamomile tea, and Holy water from Lourdes. 

People who have chosen to reach out with messages of support and love have been so treasured. Phone calls, emails, letters, notes, offers of lunch or dinner and other... I feel so much comfort in their messages and offers of time and help.  One (one of my guy friends) even saucily wrote that they would rather look at pictures of food than hear the news I had just given...

For you k...

I am so very lucky that I am not alone on this experience.

Day 7 - 40DOW - Curious George is my new hero

There is something kind of magical that happens when you get a serious diagnosis... You get a new level of patience and tolerance, and you hold closer to what's unacceptable and intolerable.

It is as if one gets knighted and imbued with certain super powers. Probably though, it is just some form of self examination that allows for some serious decision making.

I am not dying, but this may be the closest I get to that in a while. A friend wrote me last night about how I was now in the middle of my "bull fight" and that I had an arena of friends who were supporting me through this. I was struck by their using this metaphor not only because I am a bullfighters daughter, but because there really was some intense truth to what they wrote (and also because they hate bullfights so I was surprised to see them use this).

Without delving into a treatise on bullfighting, I will say that the bullfight is not about the torero, it is about the relationship between the bull fighter and the bull, each playing into instincts and their very special mortal relationship. They are each trying to figure the other out, and while they are separate, they form a symbiotic relationship. I am here in this ring, and I am that relationship, the instinct is driving me to examine my surroundings, and as they said, I have a cadre of people supporting that.

Which brings me to something else that has been swirling in my newly seriously introspective mind.

I recall the day when you heard that someone had cervical cancer that a pretty loaded assumption was possible made:

The woman (since men do not get cervical cancer) was a loose ho-bag and had proverbial round heels

I have heard this whispered amongst the most gossipy of people even to this day. So, yes there is a certain fear of assumptions that people (stupid people) may make about me. I know that I have never been a loose ho-bag and I most certainly do not have round heels. And I don't think that what is happening is the direct result of any karmic like indiscretions I may have made.  I am a human with a cervix and it has betrayed me (yet again).

I sit here newly diagnosed with something the most heinous of gossips use to tear people down and between that and the whole mortality associated with the word cancer causes for an astonishing amount of reflection. Self-reflection certainly, but also about the world I live in; the friends I have and thee ones I had, the adventures, the quiet moments, the rage, the gentle, the sweet peace when my son rests his head on my lap, the Ebola crisis, our southwestern drought, or awfully separatist politicians, the atrocities in the Sudan... all these and so much more... they have become different in some ways now.

At the root, though, these are extensions of curiosity, which is a true animal behavior.  There is something primal about trying to understand what is happening around you.  A certain fierceness comes, priorities seems stronger and there is a certain curiosity that reigns over me. It is like an adrenaline rush, but in a very sedate way (much like the adrenaline the human and the bull need to control when in the ring). I consider how the social animals (outside of humans) interact with each other. Elephants are amazing at this, but so are so many other animals. And there is something beautiful in that... in feeling close to that which unites all of us animals as we try to make sense of the world around us. It connects me to my surroundings, makes me feel a part of something whole and those who think this kind of thing (introspection) is something selfish, elitist, or wrong are just temporarily disconnected from the life death continuum.

Day 6 - 40DOW - another stage, perhaps.

In Old Norse the raven was a popular symbol and represented the power and wisdom of the mythological god Odin who would strike fear into the hearts of even the bravest warriors with his two fearless ravens sitting on his shoulders.

Me Hello again, 3:00am. You kind of suck for me right now, though I recall the days when you were fun and I was much more invincible.

I've moved into the next stage. Or is it another stage?

It happened the second I hung up on the last person in my inner circle.

The very second my finger pressed the hang up button.

I felt stupid and ridiculous for all the crying and sad.

This is stupid, I thought to myself.

You're trying to get attention, I scolded myself.

You are making more out of this than it deserves, my inner voice admonished.

I felt ashamed for my tearful calls and emails to these people who mean a lot to me. 

My brain rattled off a list of the reasons that supports its claim that I am swimming in ridiculous.

There was a tiny voice telling me this was all OK. These are scary new words and it's ok to be scared. But tiny voices are easily shut down.

Is this denial? Acceptance? Are there even progressive emotional states after a diagnosis like this, like the stages of grief?

I know I am not going to die, so why all this fuss? Is it really all that ridiculous that I want my mother and aunt with me, even if this causes them even bigger inconveniences? That I want to monopolize their time and play paper dolls with them, like I used to do when sick and at home as a child.

I always loved paper dolls from other cultures

And the vestiges of anger are poking through in those who mean well and tell  me what to do, or discount my thoughts on what I know may be my treatment options. This is my damned body, not yours.

Is there an angry denial phase? Am I really angry? Am I in denial?

I hate that as my body recovers from the cone biopsy, the aches and pains tease me into thinking that the cancer has taken control... that it has, in a blind rage at the attempt at its excision, rallied like a fire breathing mythical beast and waged a war inside me that I am slightly oblivious to and thereby allowing to grow with wild abandon as I navigate the days until my oncology appointment.

I decided that if it should have a name that somehow the notion of carrion should be involved. I have decided to invoke the ancient Valkyries of my genetic past, the ones that were ravens that became the ears (thought) and eyes (memory) for Odin, that cleaned up the battle fields by eating away at the carrion that resulted.

I want those ravens to remove my carrion and bring me the wisdom to do it bravely.

Day 2 - 40 DOW - was pretty shitty

Not my cells, but similar enough cells

Cancer

in-fucking-situ (I hope)

A cause for celebration. Really. They say.

But holy fucking shit, calling an oncologist for an appointment for yourself is something I wouldn't wish on anyone, Not even someone that could use a strong life lesson or a swift kick in the butt.

You get that call. The one that gives you the pathology report and tells you next steps and it is so heavy and burdened that the air gets thick and it is almost impossible to breathe. Partly, I wonder in retrospect, if is so that you don't miss a word about what you are being told.

The call to the overly cheerful oncology office to book your appointment.

The calls to those you love. Your husband, your mother. You aunt.

Contemplating how to make the calls to your other loved ones; your father, your cousins, your friends.

Return calls. the news spreads. You get calls from your brother, A message from a professor from when you were back in medical school (who is now a close colleague to your mother).

Priorities mulled.

Pathology reports faxed. scanned. emailed.

Decisions to be made,

Priorities re-mulled.

What do you tell your young children so they can navigate the stress they know you are feeling without giving them scary words that will make things worse.

What do you tell your friends. How do you tell your friends. Do you tell your friends? It is easier to tell strangers.

How do you navigate not knowing what the oncologist will say without Googleing yourself sick.

And again, priorities re-mulled.

Fighting the tendency to blame yourself.

Trying to be strong because you need to be for others, because the last thing you need is to take care of someone else when this is about you (and not them).

Trying not to listen too closely.

Wondering if you will lose friends. Knowing you will (I've worked in cancer, it happens) wondering who it will be.

Wondering what do you do. Do you burden friends with the news?

Having to deal with the part of myself that feels socially awkward and introverted.

Remembering to breathe.

Philip K Dick said that cancer was "the process of creation gone wild...".

Thoughts of prudence and of recklessness. 

The mantra of thinking "it could be worse" repeatedly. intermittently. nauseatingly.