Category Archives: courage

the glint of light on broken glass

The other day I received an award for being positive in the face of adversity. I essentially got an award for getting cancer – though it is more specifically about how I chose to handle it.

Costumes, wearing costumes did it!

Having cancer three times in under five years is pretty messed up, but it is a part of my story.
Thank goodness it is just a part – but while living in it, it seems so all encompassing – like it has always been a part of my story.

8662424109_f2bec79f52_z
Source: https://www.flickr.com/photos/francescaromanacorreale/8662424109

 

“Don’t tell me the moon is shining; show me the glint of light on broken glass.”
― Anton Chekhov

 

After I accepted the award a few people asked me how I could be so funny in such a dark time – my response is that I did not have a choice.

That is not to say that I don’t have dark moments, where I picture my son at my funeral not at some time in the distant future but rather now – in his early teens with a thin shadow of facial hair waiting to make it s entrance on his handsome face. Those are dark moments, they are filled with an internal scream so howling and loud that it hurts my body with a pure sense of pain. I hate those moments, but they happen, and they are hard to move away from – but I have to.

Usually I am able to stave off feelings about my  impending demise by imagining holding my grandchildren, touching their tiny little bodies with a wonder that only a grandmother could have. These thoughts power me, they give me something strong and important to keep my body and its insanities in a place of hope and wonder.

But every night when I take my chemotherapy pill, it all visits me again  as I wrap the pill up in a marshmallow (to prevent mouth-sores)  trying to make it swallowable… I am almost halfway through this process – so many long months are ahead of me with this. I see my oncologist monthly. Filling my head with questions I need to ask, symptoms I need to report.

I am looking forward to a time when I feel more compelled to write about watching my oncologist play the piano so beautifully that I was moved to tears while I surreptitiously recorded his playing. He played a collection of Russian composed songs – and Beethoven’s 5th. I feel an affinity to Beethoven, he lost his hearing – something so vital to what he loved to do. While I lost my breasts and my womb, and being a woman was something I love to do.

But the glint of light on my broken glass is that my breasts and my womb are not me – just like Ludwig Van was not his hearing. They are a reflection of our capabilities, one of the shards of broken glass – but never the whole.

 

 

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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

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.

TMI

 Navigating a cancer diagnosis that has a surgical intervention is pretty complicated. In the case of breast cancer  the mastectomy or lumpectomy scar is right there for you to look at, it is hard to hide from, even in a case where the patient has opted to get reconstruction. 
Girly bits, the lower ones, cancer is a little different. 
Both breast and cervical cancer are traditionally considered women’s cancer (though men can and do get breast cancer). Our breasts and vagina’s are the most obvious parts of what makes us women (yes, yes, yes, aside from all that inside touchy-feely kind of stuff).
I have not had breast cancer, but I used to sit on a board for an organization that served women who had breast cancer, and as such I heard a ton of stories. Women’s sexuality, for many of us, are tied up in our boobs.
Are they small. Are they big. What kind of nipples. Do they sag. Do they perk. 
People we, as women, love intimately, typically love them.
I can’t imagine the mental turmoil surrounding losing your breasts.
I know too well the psychological turmoil in losing your lower girly bits.
For starters, here is a pictorial cartoon like representation that I took from the ethers about what those girly bits look like. I would have used actual body parts, but really, it can be hard to tell from something like a medical school cadaver image. 
It should not be a surprise to anyone that I owned these parts. These parts are also part of what made me a girl. Aside from boobs and all that other stuff. Gender identity… I believe that is the new buzzword.

This is me, before the surgery.
So, below is a picture of me after the surgery. I had to use some fancy apps on my phone to remove those parts which I had removed. But this is all that is left inside me. Most of my vagina. And my ovaries. Everything else was taken out. My uterus – OUT. My cervix – OUT. My Fallopian Tubes – OUT. There were some other things that got taken out too; lymph nodes, tissue… but those aren’t girly bits.  Oh, and you may be wondering what is up with my ovaries. For now, since I plan on asking my oncologist about them at the next meeting, I just imagine that he blinged them up and hung them on my ribs  or something once he separated them from my uterus and Fallopian tubes. I imagine that they are dangling like a disco ball for my abdominal region (what seems to have gotten big enough to play host to an CRAZY internal organ dance party).
This is me after.
But this is my trying to make light of something that is far more serious. My scar from this surgery is on my abdomen. It has not really exemplified what exactly happened to me. 
I had all those parts removed. My vagina was shortened. 
For the past 5 months, I have been terrified to think about what my new body was like. I knew and celebrated it being cancer free, but it changed. it changed in ways that make it very obvious.  
But these are things I cannot see. And because I can’t see what my new vagina was like, I had created horrible images. These were courtesy of words like scar tissue and granulation that were tossed my way in my post surgical exams. 
Those are not pretty words, images of keloid and granulation in my mind as to what my new vagina looked like. I had images of puckers tough tissue reminiscent of the ears that a bullfighter cuts from a bull.  In my head, my new vagina was hideous. I was ashamed and horrified.
So, finally, after five months. I got up the courage to take a feel and see what it was like.
It wasn’t hideous to the touch, there were no areas of puckered keloid tissue with granulation that I could identify. The tissue was smooth, taut, moist. Just what it should be, though missing the nose tip of a cervix.
I cried with a sense of relief.

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!

https://www.flickr.com/apps/video/stewart.swf

The fossils of dead superlatives

I am the best at beating cancer.
Though in some respects, there was not much to beat.
In the end, we caught the cancer so early it was only the size of a grain of salt.
Yes, I talked about that before.
There are many strange things that happen when that words gets tossed into your life.
Trying to make sense of it may be the hardest.
In my case, it is managing the whole thing of having CERVICAL FUCKING CANCER.
It is, after all, considered to be a sexually transmitted infection.
And then there is managing that stigma.
I am finding my path as an advocate for the HPV vaccine. And am meeting with many people about how to help spread the word about the vaccine. I will state that I would not wish what happened to me on my worst enemy, and I had it easy.
Anyway, the stigma thing.
Some people that I tried talking about this with dismissed my concerns as my being more upset about it than the situation merited. In my fragile state I listened to that too much. Several months out from hearing this.. I am calling bullshit.
As I talk more with others, it is very clear the stigma is there.
After all, it forces us to have a conversation about S-E-X.
Because, that is understood to be the main way that you get it.
At a dinner to talk about HPV recently, a dear friend revealed that she had cervical cancer. And I watched her talk about her experience, and the others at the table leap at the chance to blame it on her husband at the time, as he was older, more experienced. I was pretty horrified by this, one could tell the others at the table liked her. Most likely they did not want to have any unpleasant ideas about her and her choices in behavior. We were meeting to discuss how best to spread information about the importance of the HPV vaccination among a particular religious group. As I heard them accuse the man, the hair on my back flared a bit. I reacted this way because it was judgement…  this happened and lets blame the older ex-husband because that is easy to do (though there is no way of knowing if it was the correct thing to do).
My tendency is to assume that everyone is having sex.
What that translates into can vary;
  • waiting until marriage
  • waiting until in a committed relationship
  • Sex on the first date
  • Sex with strangers
  • Sex with multiples
  • and on, and on, and on…
We have chosen, as a culture, to decide that one (of these) is better than the other.
We tend to judge men and women who choose to move outside the boundaries we set. That is, those of long term, spiritually certified, monogamous, committed sexual relationships.
And while this may present a cultural ideal, it really is not the case. One just has to look at the research coming out of the Kinsey Institute to be witness to this.
It is unfortunate that the assumed cultural demographic for women with HPV and cervical cancer tends to be among what is often referred to as the loose woman. 
Working in the early 80’s in some health promotion programs (breast and cervical prevention models) it was often a topic of discussion that cervical cancer was either transmitted by 
a) loose women or 
b) the husbands who had sex with loose women who would then  give this disease to their ever so chaste wives.

The truth is, is it really any of our business to worry about past choices? Past experiences?
We can all assume that the women who’ve had a diagnosis of cervical cancer have in fact had sex. It follows that in some way they have been exposed to the virus either through her own experiences or those of her partner.

The possibilities range from 
a) being raped (which is much more common than is reported, regardless of how you feel about it being deserved or not, and that is a whole different conversation) to 
b) choosing to have sex with a partner who is infected.
The only thing for certain is that there has to be at least a third person. This is in regards to the sex lives of a couple for HPV to happen (I don’t mean a three-some per se, though that is not excluded). The couple can be gay or straight.
Divorce rates indicate we participate in a form of serial monogamy. We can follow that with the idea that people who remarry have been exposed… which helps accounts for the idea that 80% of our American populace has the HPV virus.
But there is that stigma, it hides out there as this article recounts and is poked fun at by this Onion piece.
Dear me, I seem to be ranting…
Announcing I had cervical cancer allows people to make  assumptions about my sexual behavior. These assumptions create a need in me to discuss my health and sexual history to allow people to form a correct opinion of me.

Hell, even my husband was lamenting that he hoped  that he was not the cause for my disease,

In the end, my cancer was something that my body was unable to fight and the cells decided to mutate…  in most cases, this is something that bodies able to fight on their own.

A vaccine would have helped.
Oh, and by the way the incidence of oral cancers is on the rise and in men and these are associated with HPV too… how is that for a fun conversation. Lets talk about sex baby!

~sigh~
The funny thing is that I titled this post just because I read this article and liked the phrase enough to want to use it.  I did not intend to write a diatribe about my dislike of judgey people in terms of sexual behavior, but it happened… I suppose it is something I am still processing. one does not hear the word whore cancer and move past it easily.
Anyway, I love words, I love concepts… concepts like the consensus of definition, etymology, and epistemology (to name but just a few).

I have had several friends comment on the cautiousness in which I choose my words.  However,  when I am excited  I tend to fall back on strange metaphors, similes,  and synonyms that are tied up in my multi-cultural background and present what to some as gibberish. My  friends are able to figure it out or at least pretend to. 

I do love words, I like to listen to them, make sense of them, argue and chat using them… and I was charmed by this idea that remnants of my ancestors word choices are alive and well in my current vernacular.

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:


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 FacebookTwitter, 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?