Messages from my mirror

The face is the mirror of the mind, and eyes without speaking confess the secrets of the heart.
~St. Jerome  

Today I scheduled a follow up eye appointment for October.

As I opened up my calendar I realized that the four months would land on the day before I had my surgery, which was when my eye problems started.

In the eight months since my life was spared and my body was torn apart in order to do that... a lot has happened.

One of the things that I find most striking is that my eyes have changed. And I have been trying to figure out what it is that I have noticed.

I am not sure when I started to think my eyes looked different to me, but I recall wondering if somehow my irises had become lighter or cloudier in color. Cataracts at my age?

The crux is that they don't look happy to me, they looked pained, tired, and perhaps even scared.

I don't know that I am any of those things, but I am a very different person than I was in 2014 B.D.

That B.D. is Before Diagnosis.

This process has been hard, but the hardest part was learning to stand up for myself. Standing up to a mother and aunt that I know love me, but who felt that age gave them some sort of prize that included tearing me down... I am sure that is (was) not their intent... but as they threw things at me that I would have previously have bowed my head to and ignored but in the middle of my fight to feel whole again seemed unduly cruel coming from them. As I said, I am sure they did not mean it, but they still hurt me very deeply on a level that a doctor could not touch.

I think, perhaps, that is part of the cloudiness that I see in my eyes.

It is also navigating my health after a pretty invasive surgery, the unwanted weight gain, the change in shape, the pain, the aches... the health of my eyes included.

They are better now though, the scars left on them through repeated injury and a misdiagnosis are healing, almost gone. The burden of the change of lifestyle for them is permanent... eye drops for life, they said. Keep them moist, they said. I will, I reply.

But when I got home from my appointment today, I looked in the mirror and still saw that certain kind of cloudiness, and I hoped it was not permanent.

Then there is this.

“Behind these eyes there is a girl trapped within her pain – a girl feeling all the emotions of anger and sadness. She’s fighting for a way out.”
~ Chimnese Davids

TEDx yzpdqbil*

I have to admit, I am currently a little obsessed with TED talks.

It all started with this one talk - I think I saw it sometime in the fall of 2008;




I was floored, and moved, and thought "what a great way to put things out there".

And since this was new I kind of waited to see what it would bring. I made my mother watch it. I sent it to my friends, and have fondly referred to the talk and my reaction to it ever since.

I was not a Ted-aholic, though. I would only reach out to Ted videos when I referred to them.

But something changed.

As I was preparing to host a movie screening with panel discussion, and I could not find anyone willing to serve as master of ceremonies, I realized that the job would fall to me.

So, I began watching them to see what makes for a good speaker, what are things that are compelling, what things did I like.

I even made Squink watch them while he would take a bath, the bio-luminescence ones are super cool!

I think I am a mediocre speaker. I have some strengths, but plenty of weaknesses.

But after the event, I had the idea of a themed series of talks, something like the Ted talks I had been watching for cues.

It is possible:  https://www.ted.com/participate/organize-a-local-tedx-event

But I think the one for Phoenix is taken.

And they frown upon "themed" events.

And when I thought about it some more, I saw so many possibilities and had to chuckle at the notion that each one had at least one "rule violation".

I thought about one dealing with the many faces of cancer; from the physicians that find it, the pathologists that decipher it, the oncologists that treat it, the people who have endured it, the families of those who suffered it, the nurses who care for them, the scientists researching it.

It would be good, but it is a theme and violates the programming rules.

Then I thought about what it was like growing up as a third culture kid, and how cool it would be to get other people who grew up that way. I think my friend Doralice would have some wonderful insights, as would my friend Sparrow, and my friends Jeff and Erica. I think it would be interesting to give voice to that kind of experience. It is a bit unusual.

I have met so many interesting people, I would love to have an event to hear them talk... the Jivaro indian that had to flee his tribe because he wouldn't convert, the people who started putumayo, the circus people, the rodeo folks, singers, entrepreneurs of the ridiculous, those off grid (the hardest to organize), photographers, movie stars, cartoonists in the golden era, explorers, survivors, hedonists, narcissists, and so on.

That got me to thinking about what would happened if I was told I had to give a Ted talk...  kind of talk could I give? what would it be about?

My ideas for Ted events is large.... but the list of things I feel I would be qualified to talk about is pretty non-existent.

I suppose I could talk about how being diagnosed with cancer was life changing in some spectacularly subtle ways... or what it was like being born to a bullfighter father and an explorer mother, though that is really their stories. About being a child of divorce (booooooring).  What it was like managing a high stress pregnancy, most of which was spent on bed rest (gag me).

At this point in my life, I think I would talk about why I think vaccines are important, from a theoretical view, and cultural view, and prevention view, a mothers view, a survivors view,

What would your Ted talk be about?









*stands for examine your zipper, pretty darn quick, before I look (a childhood phrase)

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.

..

A year in my life

A year ago, I had sent my son off to Europe and missed him terribly.

I think it was the Starbucks app of the week that was a picture a day app. I downloaded it, because;
1) it was free
2) I was thinking about documenting how much I missed my son

So, I took the selfie... and time flowed and I stuck to it and yesterday I got a notice that I had taken 365 photos.

One year, one insane year.

A son sent abroad at a very young age and being diagnosed with cancer. Not really sure which was hardest at the inception.

I missed my son terribly and was so happy when I reunited with him.

And hearing you have cancer sucks, sucks, sucks... and somehow it infiltrates everything.

But I missed my son and that was the hardest thing ever, and yes.. in a way, it was harder than being told one has cancer.

But the cancer things has its own craziness, craziness that makes everything outside the norm seem so much scarier.

So here is that one year of selfies, and as I sit here trying to figure out what all to tell my oncologist when I call him tomorrow, I think I look so much happier now than I did when I missed my son so much!

A seasonal urge

I grew up in the land of eternal spring... some even called it eternal fall.

I never have experienced four strong seasonal changes... usually it was two... but it could even be argued that there was one season unless one counts "more rain" as another season.

Ecuador had that... rain and more rain, it was eternal spring, or something akin to the glorious autumn season of the southwestern US.

Yes, it is confusing, but the big seasonal denominator for me has been the presence or absence of rain.

Today was that kind of day here in my beloved American Southwest... overcast and lightly rainy. A huge high pressure system that seemed unexpected causing tension headaches and achy bones. The release when the rain managed to push past. The smell of creosote wafting in the air.

I always feel a different kind of contentment in the rain, no matter in what part of the world I am in. If there is rain, I get this feeling. It isn't particularly productive, but is a certain kind of peace or contentment. Though I do tend to write more when I can hear water droplets hitting the windows or the cadence of rain on the tin roof of my back porch. I feel the magic that my favorite authors are able to convey about this world, the kind that feeds the stories of Borges, Allende, Esquivel, and Garcia Marquez. While I do not claim that there is a Latin Exclusivity to the genre, as a daughter of its lands, I can understand the origins every so deeply.

When it rains, the world feels magical.

Rain in the magical jungle city of Tena in Ecuador

"The seasonal urge is strong in poets. Milton wrote chiefly in winter. Keats looked for spring to wake him up (as it did in the miraculous months of April and May, 1819). Burns chose autumn. Longfellow liked the month of September. Shelley flourished in the hot months." ~ Helen Bevington 

It was smaller than a mustard seed (or “How ya doin’?”)

“How are you doing?”

I get asked this a lot. I mean a lot more than usual, a lot, a lot. I imagine it is the result of their knowing I was diagnosed with cancer, and with a subsequent surgery.

It is an even more complex question to answer now.

The nuances of recovery from my surgery are interesting.

On one level, I am so incredibly lucky that it is a true cause of celebration. I wonder how rare it is to get a cancer when it is under 1 mm.

In one study that I read about cervical cancer, the data regarding the tumor sizes (not direct to the study, but the data was presented) said the mean size was 2cm and the median was 1.8 cm (of the tumors in the study).

I was at 0.8 MILLIMETERS

a grain of salt.

       a grain of salt, on a pinhead.

Smaller than a mustard seed.

The average size (from that one study) is like a marble, or a quarter, or a stamp.

A stamp, rather enlarged

I am so insanely lucky. However, my cells had made the crossover from being atypical to being cancer. The cells in question had moved from being In Situ to being nefarious (micro-invasive was the word) things…. So I said get it out.

It was aggressive in terms of the treatment I chose. I didn't, however, want to revisit this conversation of “You have cancer” again. At least not for this.

So, the surgery for a grain of salt included my  the removal of entire uterus, through a long abdominal incision. It included the removal of my Fallopian tubes, sixteen lymph nodes, and some tissue that surrounded my uterus.

For something the size of a grain of salt.

The surgery was traumatic. My body does not feel normal, though it feels like it should feel normal. No visible parts are missing, but there is the scar that travels along my lower abdomen.

My girly bits and stomach are numb. My scar itches. There is a heaviness where I image the lymph nodes were. Cold causes a strange ache. I get exhausted easily and try to balance everything.  There is something I will refer to as exudate. My stitches have yet to dissolve. I don’t feel good in the sense that I feel limber and mobile. My abdomen feels  tight and yet wobbly.

Source: http://en.wikipedia.org/wiki/Daniel_Johnston

Musings, womenblair, cancer, death, emotions, gentleness,grain of salt, gratitude, hysterectomy, musings, non-being, philosophy, small

This post originally appeared elsewhere.

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

For the children's sake

Today I went to a luncheon that was started by a family that lost their son/brother to the ravages of addiction.

As I listened to the mother and sisters make impassioned pleas for support, I thought about how I would feel if I lost my son... not just to addiction, but to anything. Considering that I was close enough to that when he was a new born, I felt the mothers anguish. Then as I thought about how the young man was only in his mid twenties, I wondered how that must feel if it happened now or ten years from now, or even twenty years from now... painful is what I could answer.

Following that, I began to consider what my parents must have felt when I called to give them my news.

I started to feel a little sick to my stomach. Just in anguish.

I thought about my mothers gasp when I called her, and my fathers silence when I called him.  I noticed them, but only slightly... I was so wrapped up in my own extremely feeble attempts to try and manage the news.

To call them and share the news that "I have cancer" was hard. And to now be able to put myself on their imaginary end of the phone line was pretty horrifying...

What would I do if Squink called me with such news... not a question... the mere thought brings me stomach pain, a heavy heart, my breath stuck in my throat.

Our children are not supposed to die, they are not supposed to get seriously ill, to suffer.

Life is pretty ridiculous, and I say that because in spite of everything,  it all results in death, and we humans become so attached to each other, that the death part becomes un-natural to us in a way.

And I am not trying to be-little it, I am more trying to wrap my head around it.

People we love get sick (be it cancer, addiction, heart disease, depression, leprosy...) and they die... and we have to deal with the mortality of the ones we love... and the pressure of things when it is your children who are going through the process, well it must be intense and I don't think it ever gets any easier.

When we were asked if we wanted Squink to be given last rights, that was a tough moment. We understood that he was not a healthy baby, that he could die.... THAT was intense. Schatzy and I went home and prayed, we felt helpless and when that happens you turn those feelings over, they become outside of self.

So that is all I can say, getting that kind of news must be devastating, as devastating as it is to get and be aware of the news about yourself, but somehow I just know that no matter what his age, I would take the news from him far harder than I think I might if the news were about myself... and neither would be easy.

poetry of deliberate awkwardness

One of the things with the notion of love is that there is a form of reciprocity that is involved  -  and yes, this is a generality… I can already think of instances where love is not expected to be reciprocated.

I love heart shaped rocks

I love road runners

I love Ecuador

I can say that I am pretty darn sure none of those love me back, (though I have an internal argument that countries/cities/regions can love someone but that is not really relevant to today's thoughts) but that is not the kind of love of relationships.

I love my son, I am sure he loves me back.

I love my family, I am sure they love me back.

I love my friends, I am sure they love me back.

However...

Lyric Poetry, painted by Henry Oliver Walker (Thomas Jefferson Building, Washington D.C.).

Many of us do not take the time to notice and acknowledge how beautiful we are as humans.~ unknown

So, here is where I can say that in general I am really hard on myself. I don't know that I am a beautiful human... I would like to think I am, but I can't verify that I am with any certainty (you could ask my mom, and she would say yes, but she is my mom and of course she has to believe that...). 

If we have beautiful on one end of a spectrum I really can't say that I think I would be on that end. If we have a  complete spectrum of beauty I can't say that I would be on an end or even in the middle.. since there is something in the way we approach beauty that runs from good to bad that in some sense one part is better than another.

It is pretty sick, isn't it. 

I mean, I look at my family, all my family and I am just wowed by how beautiful they are. I just can’t manage to apply to to myself.

I saw this Ted talk  and it struck a chord, though I think he may too easily dismiss duty in terms of love... but, I do think he has something in his ideas about loving the deliberate awkwardness of being human.

I am most definitely on a scale that measures that.

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.

Life is beautiful - 6 & 7

Yesterday was tough, it is a tough spot right now. 

In my attempt to find the beauty, I failed... I mean, I had that poem, but I really found it the day before... and the rest seemed average and even hard.

It all, life, feels sorta like that - hard. 

I feel completely helpless in some ways (some very new ways) because I am just in a state... angry, mad, desolate to name but a few and all of them in one big huge swirling mass of emotional baggage.

I have no patience for this kind of nonsense. I have too much to do.

And, people keep calling me back to earth and reminding me that my behaviour is inappropriate. Which adds to this feeling of mixed mass emotions swirling and boiling and festering. Shame, I suppose. I am better than being an angry person.

I have moments of average, and when I see my son or husband I can claim joy. But that seems so selfish, in a way, to allow my son and husband to be my bringers of joy... what a HUGE burden to place on them. Guilt, I suppose. 

I am trying to remember to breathe, to mediate, to pray... but the words that come to mind when I do this are hard, and angry, and as my family reminds me... inappropriate.

I have and see so much to be grateful for, but these crazy emotions are so difficult to manage. 

How does one throw themselves a gentle pity party?

So let me conclude by stating that I suppose that the beauty I was able to find is that (#6) I am alive and (#7) I have people who love me. There is comfort in that. But, there is a tinge of insincerity in my heart with these right now. impatience, I suppose. 

The kind of beauty I want most is the hard-to-get kind that comes from within - strength, courage, dignity.  ~ Ruby Dee  

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 

Remission

At my last appointment my doctor used this word.

It should be a joyous word, shouldn't it.

Not a question.

It was a blow to hear it.

As I told a friend, I had somehow thought I was exempt from THAT status.  So, when he dictated his notes and used the term to describe me, I was totally taken aback.

It's really hard to navigate this disease, especially when there is no chemo, no radiation. It's like a free pass.

If I were sick from those, I think people would be much nicer about my mental state...

But I LOOK FINE…

So, I must FEEL FINE…

But feeling fine is a lot of work. More work than it's ever been before.

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.

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.