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

I do not crave Squirrel Poop!

I crave PEANUT BUTTER!!!!!!!!!

For the past 5 weeks I have consumed at least 10 jars of peanut butter. At least 10 JARS! This is crazy.

It is like one of those insane cravings that can't be sated. It has to be smooth - or as they say in peanut butter parlance - "creamy". 

Yes, I tried to curb the insatiable craving by buying a jar of the crunchy (or chunky) stuff. It merely slowed down the intake, but not enough to think it was effective. It was actually a catalyst for a dangerous turn in this craving period. I had to eat it with chocolate. Yummy combo yes, but not when you are a super dark dark chocolate lover and find that combination is heinous....so you run out and buy some crappy milk chocolate to make it palatable. And even if you return to the no sugar added creamy peanut butter your love, the taste for hints of milk chocolate remains.  So, I elevated the experience buy snagging some of  my son's Lindt's.

Only to find the creaminess of their center the absolutely perfect complement to the spoonfuls of creamy peanut butter that I have been shoveling ion my mouth.

“Who uses crunchy peanut butter?” he asked the room. “You might as well eat squirrel shit.”
~ Michael Thomas Ford, The Road Home

I am not sure about the source of the craving, but the all-knowing Google gave me the impression that this is not an isolated thing, that there are many people out there with a hankerin' for the thing I most currently consider a nectar of the gods.

There is a possibility that I am in desperate need of something that my body has been missing, much like the fierce beef carnivore I would become back in the days when I actually got my period. The interesting thing now, since I don't get a bloody period, but do get a hormonal one is that I still crave beef, just not with as fierce a drive. 

But back to peanut butter. 

It is insane, I am carrying around jars of peanut butter with me, I make runs to the grocery store when I polish a jar off. I have bought big jars, and normal jars. I eat it straight out of the jar.

My husband must think I am crazy, but even he has helped me give in to this madness by running to the store late at night to help keep me in stock.

It has to be chocolate, no bread, no jelly... just peanut butter... and lately some milk chocolate is nice (but not required).

Queen of my cancer domain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

..

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

Peek-A-Boo - I can't seeeeeeeeee you.....

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

The idea is to learn object permanence.

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

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

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

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

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

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

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

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

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

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

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

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

When will learn to be more gentle with one another?