Category Archives: death

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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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.

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
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:


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 5

I am kicking and screaming

I am angry

I lash out

I don’t know where else this could be coming from

damn cancer

and so, to try to slay this angry beast, I looked round me trying to find something beautiful.

here is what I have…

there is a certain kind of light that I have only ever witnessed here in the desert

it comes at sunset, in winter

it is a light that makes our mountains purple instead of brown

that seems to bear a reflective quality like that of burnished gold.

that was the beautiful I saw today

and here is a terrible picture of it…

“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.”   

~ Rabindranath Tagore

Find the beautiful

THAT

Find the beautiful

Yes, that…

is my theme for this year.

Though we travel the world over to find the beautiful, we must carry it with us or we find it not.
~ Ralph Waldo Emerson  


Finding the beautiful… it is very present in the external. 

But as I navigated just how ugly it was to go through this cancer thing, how easy it was for people to forget that it is my battle, and I had to find myself repeatedly trying to forgive… I lost my place. And I was so hurt by people that I am close to (who are ashamed of my diagnosis, who couldn’t/can’t talk to me about what was/is happening, who took things from me with out asking, who made things harder for me….) that I forgot to stop and find the beautiful.

So, fuck the folks who take away from this… they can live with their choices.

And I am so lucky, because I have people in my life who can help me do that. So, I have to let them in and help me see what I need to see.

I,  am so excited. Because, you see, this year, 2015, I get to find the beautiful.

Yes, that…

is really my theme for this year. 

holding the darkness at bay

So, after feeling a down due to yesterdays ramblings and self flagellation I find I need to pick myself back up.

The other day someone came to me and asked how I was. I told her that is is a day by day process. That I feel good, that I am grateful for so much.

She went on to ask if I had experienced any dark moments, any depression, and tears. She added that her sister is a doctor and had told her to expect me to get to that point at sometime.

I cried when I got the first message. there is something about being told to call an oncologist that puts a certain indescribable pressure on your heart. To hear it while alone in an office, is hard because it means that you have to call people and share the news – and I will be very, very honest, that I was tempted to not tell anyone. Though I imagined that my husband and mom would have been extremely upset with me had I gone this route – in spite of that though, I can’t tell you how tempted I was.

I even called the oncologist first. I called my physician back and asked for a copy of the pathology report we talked about the long wait until my oncology appointment and then what the report meant in terms of what was happening inside my body. I went and sat by the fax and waited for the report to arrive (he was sending it right after we hung up). I got it and sat in my office, reading (memorizing) and mulling the news, tears in my eyes. I dried them, and decided I had to call my husband and so… I called my husband and told him the news. He was devastated (he had been a young boy when his mother had gone through two cancer diagnoses, I think that what was happening to me brought all those memories back) and I had to be strong and reassuring. After I hung up, I sat in the office some more, tears in my eyes again. Bracing myself for the call to my mom. She was walking into a meeting when she answered. I heard that stop in her voice. It was the same stop when I felt when I had to schedule an appointment with a hematologist oncologist for Squink after he was born.  Granted that was just for some jaundice we did not seem to be able to get rid of, and I knew that it was the hematology part we were seeing rather than the oncology part, but still – it isn’t something you want to deal with as a mom, your babies should never see an oncologist, that should be the rule.

So that was a quick conversation and I sat in my office again, a sense of “why me?” prevailed. My boss who had gone through that cancer route walked by and noticed I was upset, came in and I shared the news with her. After that, the next 24 hours are kind of a blur. I know I called my dad, and he was probably the hardest one to tell… but only because I had no idea how he would react, and he has a tendency to avoid bad things and go on and pretend as if they did not happen so the idea that he would ignore me in this was something I considered highly probable. I only remember that at some point by the end of that night, I was sick of talking to people. Wait, I love talking to people what it was is that I was sick of re-telling the story, the news. I just did not want to have to say that damned word again.

That has been the darkest point so far.

The days following are still a blur. I talked to my siblings, texted with Prima. Made arrangements for all the responsibilities in my life that would be put on hold. Sent out a group email to women who I adore. Friends put me on prayer lists, and I got through the interminable wait until that appointment. Once I saw the oncologist, it felt so much better, because there was a plan. I knew what was happening and it felt good.

I would even say that I was a bit jubilant the day before my surgery, because that mass of mutating cells was getting removed.

I was in the hospital almost a week, determined that this whole thing would not bring me down. I have managed to stay positive through the rest, even that horrid backslide where, through projectile vomiting and other effluvia, fever spikes and chills all intertwined with a general sense of feeling horrid, I lost over 10 pounds, got dark circles around my eyes and began to lose hair. I was still in a good place.

I have these moments that seem to want to step in to those dark shadows; when I noticed that there is an area near my incision is numb (normal, but a strange feeling), talking to someone else who has gone through this process evokes some teariness, after time spent wondering if I am avoiding dealing with something, being told I hurt peoples feelings all brought forth some form of gloom to my mindset.

Thankfully, they are able to be beaten back.  And I think that is my job right now.

Day 26 – 40 days of writing – oh, the indignities…

Aside from the obvious, which is having a shocking number of medical personnel have access and *ahem* viewing rights to my girly bits…

There is also this:
Of all things, this is called “THE BOWEL PREP” and it merits all caps because it’s all about prepping my bowels.
And that’s just BOWEL PREPPING… For surgery… that is NOT on my bowels.
Puchicas
To make matters ever so slightly more dramatic, I decided to delay my last ingestion of solid food for a while because my breakfast was a bit on the pitiful side when one considers that I won’t get to eat until fucking Tuesday (pardon my French, but it just seems cruel to wait that long when gluttony is my favorite sin). THEN (all caps for continued dramatic effect) I chose McDonalds (of all things wrong and awful on this planet) because I didn’t want to delay it too much (as I was violating a strict interpretation of my pre-op orders already) and I was in a small town but needed to head home and there was no way in hell I was taking magnesium citrate at the start of a 90 minute road trip because the thought  of forced roadside stops with or without the benefit of a toilet (and more importantly soft toilet paper) seemed like torture.
So, I waited until I was within a 20 minute drive home and drank my cherry flavored liquid (from hell).
That being said, the version of “BOWEL PREP” that I get to do for this operation is so much nicer than what I got to do for my colonoscopy.
Small blessings.
Now please excuse me, I need to powder my nose.