Category Archives: science

the sky is empty

“I talk to God but the sky is empty.”
~ Sylvia Plath

Ge’ez, Sylvia Plath is sure a downer!

When I was little, I thought my grandparents lived in heaven, not because they were dead, but because they lived in Arizona (a stretch to see how I got here, I can imagine, but bear with me)….

I came to visit them with this kind of sky:

From this kind of sky:

So, when we went to visit (usually in early summer) our plane went up above the clouds, but never came back down through them… so, they must have lived in heaven, right? Please, also note that this was also around the time I was very saddened that Zeus and the pantheon of gods was not “real” and that my mother found me once, kneeling in the front yard praying to the moon-god. I was a wildly spiritual child.

Considering my family did not practice any real form of faith as I was growing up, they were Protestant in Roman Catholic countries after all – and any Protestants that lived where we were tended to be evangelical missionaries and not the most fun to be around – add in that we were considered to be “converted” and there were all those heathen Roman Catholics and indigenous cultures that needed to be saved. 

Many people tell you to lean in to your faith in trying times like this. It is amazing how much you seek something out, something that requires faith. But looking for something that is comfortable, that does not mean I must have a rebirth in any fashion, that means I don’t have to believe fossils were put on earth by satan to lure us to his evil ends,  something other than the spiritual connection to the cancer I got is because I have mommy issues, something other than I am not godly and got cancer because I am being punished… 

fuck – fuck – fuck – fuck

FUCK

How do you find faith in the midst of such fucking insanity.

Notice that is not a question, though it probably should be.

Anyway.

I learned that I had a sizable chunk of muscle removed with my last surgery. Granted, it was not the breast surgery removal of days of yore when women begged for a radical (nay, they wanted uber radical) mastectomy – the kind that took out muscle and bone (think ribs and clavicles). I’m missing 2 inches of chest wall muscle… and I’m still in disbelief… faith.

The way humans think is sometimes shocking to me. BUT, and it is a YUUUUUGE “but”, I get it. While my head understands that if treated correctly a lumpectomy has the same results as a mastectomy and you heal faster – but WTF does treating something correctly mean? My tumor was muscle adjacent, so does that mean that one of those a$$hole cancer monsters escaped and is it hiding somewhere? Somewhere that chemo and radiation can’t find?  Faith.

This is where finding faith again is crucial – but it is so freaking different this go around, faith that is.

If you are prone to that which is beyond the physical and don’t judge, I can share how I am re-learning how to lean in to faith again.  The thing is, I will most likely appear a heretic to you.

The one thing I know, is that I don’t think faith is about re-birth (that concept is what caused me to abandon faith before)… if it is for you, that is awesome – but I don’t buy it one effin’ iota.

I, beautifully enough, am finding this process of rediscovering faith kinda cool. and a bit painful.

It is especially nice since there is a disquiet in this process, of being a person diagnosed with cancer. It was present the first time and it is present again this time.  The subtleties of it that I experienced the first time is magnified, but both of my cancer experiences, so far, are incredibly similar… at least internally.

Because my first round was stage 1 and caught super early and only required surgery it was subtle. I felt like a fraud of a cancer patient because phht, it just needed surgery. People (most of them), aside from the time during the surgery put me at the bottom or low-end of a cancer continuum (that was practically equated with being cancer free).

In this round, where I am currently listed as stage 2B (and probably only because they did not take out more nodes and we will see if that changes after the next battery of test results come in), it is still sufficiently low on that continuum that I still feel like a fraud (though only less so because, after all, it looks like I am getting chemo and radiation this time) and the news about the cancer itself has just gotten progressively worse. Many of those same folks from my first experience are still like “well, you aren’t dying”.

I am adding silently  in my head; “that I know of” because I am still waiting for more tests and results of tests.

No, I am not dying (well, at least I don’t think so, but as I said… I will have a more definitive answer after I see the results of the next test). Trust me I celebrate that!  I am not healthy, I have a chronic disease that gives me (according to my radiation oncologist) an 81% 5 year survival rate (though this varies depending on the sites with such data). Yes, 81% is super awesome, but before this all went down I was with most others and had the general average population of a smidgen over 98% . A 17% drop in my life expectancy is still a crappy thing to have as a part of my life.

Trying to balance a good attitude with crippling doubts is a strange place to be.

I struggle. The struggle is real. Not because I have a Christian need for an after-life – but because I want to be more than just a life form – I want something divine to be a part of this experience, I want to lean in to something when I am so riddled and consumed with anxiety. A set of rituals that I can be a part of, a community where I feel like I belong. IN my head I often say to myself, I just want to be loved through this.

I read about Sherman Alexie today, something that I struggled with, but which spoke to the spiritual little girl in me that the unseen world is there for those that listen.  (the story is here).

I have found great comfort in so many people in my life, women and men – willing to be a part of this process with me.  I hate to lean on them, how do you answer the unanswerable to someone like me desperately seeking?

 

 

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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.

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:


Day 18 – 40 days of writing- The long, slow, walk to the guillotine.

My paperwork is filled out.
And I sit here, today, tonight, feeling like I am awaiting an execution.
There is such an ominous feeling in knowing that tomorrow all this becomes so much more real. There are conversations I have to have…   decisions I have to make… all of which feel overwhelming to me now, even before they are completely and specifically known.
And as I contemplate them… the ones that are somewhat known, they feel so bitter.
I can’t ask “Why me?” because this is a product of life; choices that I made and that have brought me to this junction. It is futile to wonder the why, but in my most self pitying moments I wish I could scream this into the abyss… and then reason takes over and answers me gently.
Nature is so cruel. I was brought up with that in my every day life. And yet, I want to scream… “why do this to me, why take the one thing that is a symbol of being a mother and obliterate the last few years of my chances at having more children”. “I wanted six”, I want to add to my scream, and in the end I feel weighed down by this incredible failure of aspiration.
And perhaps it is this failure that makes things in this situation so damn hard, because it is just that. A failure.
I look at the exotic eyes of my beautiful son, and choke up at how much I love him and how profoundly lucky I am that he came in to my life, and feeling that the intense lamentations of the ones who were never to be born are equally lost to him.
Couple that with the idea that I should be grateful that I do have him, creates a whirlwind of emotions as intense as they are complex. 
That which I have held most sacred, motherhood, will be denied me (in this way) much earlier than I am ready for.
The rituals of this disease are subtle and fierce. My physician turned my care over to the oncologist. I do not get to return to him until I am released back… much like a prison sentence.
And so, I feel like my dinner tonight was a last meal… and tomorrow will begin the long, slow walk to my own personal guillotine.

Day 16 – 40 days of writing – cosmos and faith

A conversation I had about faith.

Link


This assignment is due by Sunday night, but I certainly hope to have a nice “dent” in its completion by Friday, if possible. I truly appreciate your help on this. Would you mind telling me your age, where you are from, and if you followed your worldview since your youth or did something influence a change?
I am 45 years old. I was born in Bogota, Colombia to American parents, though we did not often socialize with other expatriates. I also lived in Spain, Ecuador, and Mexico before moving to the USA.  I think it was this experience that led me to my world view. I am an agnostic, but specifically a theistic one; meaning I believe in a supreme power/being, I just feel that knowing who or what that is lies outside of the purview of human understanding… and since faith is outside of the realm of scientific understanding I do not hold it to the rigors of scientific research.  I do however, approach my faith with a deep curiosity and search for more knowledge and insight.
 
The required elements are outlined below:
1)      For this assignment, you will interview two people with different worldviews. One will have the Christian worldview and the other will be one of the following:

a)      Atheist/Naturalist
b)      Secular Humanism
c)      Pantheistic
d)     New Age

I do not consider myself to be any of these, I consider myself to be a theistic agnostic. 

2)       Include in your interview, the following prompts:

a)      What does it mean to be human?

I see humans as part of a cosmos. We are on this planet/universe and part of a whole ecosystem of things that evolve and works both for and against each other.  I am seeking to understand why there is a need to see how we separate humans from the rest of living things as I am not convinced this is an appropriate means of thought.  I tend to eschew thinking that humans are any more special that other living beings, but get uncomfortable at the use of the word special here… perhaps it might be a word like meaningful. I think that since we seem to have things that we call “reason” and “thought” that using those involves a certain responsibility (and should add that each living organism has the responsibility to act according to its make-up; so a cell must do what cells do and a fish must do what fish do and thus a human must do what a human does).       


b)      What happens after death?

As I assume that this questions seeks to discover my thoughts on the concept of an after life, I would have to say that I don’t know, but I am OK with this uncertainty. I tend towards falling back on certain principles in the hard sciences in that our afterlife continues in forms of energy, quarks and strings. I do know that ancestors carry on an important legacy and perhaps that their roles and stories being carried down in various forms (traditions for example) might be the most beautiful thing that happens after death. 


c)      Elaborate on who Jesus Christ is according to your worldview.

He was one in a series of people who have served as messengers regarding valuable lesson in human cooperation. 


d)     How does your worldview deal with the concepts of evil and suffering in the world?

Nature is cruel and has no remorse. I don’t think there is evil. Things that tend to be associated with evil in terms of humans are aspects of human behavior. I think that this is where things like religion are important (I tend to tell people that I am religious and not spiritual) as they serve as guides to encourage cooperative behavior and perhaps to curb tendencies that might not be as socially productive.

Thank you again for your time!!

No, problem. It was very delightful trying to get my thoughts on paper though I do feel like I did not do them justice.