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.

TEDx yzpdqbil*

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

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




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

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

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

But something changed.

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

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

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

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

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

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

But I think the one for Phoenix is taken.

And they frown upon "themed" events.

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

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

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

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

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

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

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

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

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

What would your Ted talk be about?









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

Day 1 - 40DOW - viewpoints on vaccines

This morning was a struggle. 

I am trying my damnedest to get this to happen:

If you can RSVP for a Phoenix event click here.

I struggle because I want it to be successful 

The team I am working with has been UNBELIEVABLY supportive... but it is so hard to get buy in from other folks.

I struggle with that.

But it, my sense of struggling, may have been that I had an unscheduled visit to my oncologist today. 

Bleeding.

Something I am not supposed to be doing at this point.

So I went in and saw my doctors nurse practitioner. Who performed a biopsy. 

I have had biopsies before, in that area...  it hurt like a motherf*&%#r. 

Even though she told me that it was my job to assume it was due to scar tissue, she also told me it was her job to rule out recurrence. She reassured me that it looked like granulation (BTW - don't Google it).

What makes this situation even crazier is that the woman who did my biopsy is also a woman who will be on the panel for the movie screening.

Following up on the fact that I am helping to host a conversation about a preventable cancer
and that one of the panelists will have seen my girly-bits, I just got word who a second panelist will be and.... guess what??????

She has seen my girly bits too.

She was there when my son was born, as in the room... standing right between my husband and my mother.

So, I am trying to find the beauty of all of this. So, "this" being a weird place in my life (waiting for biopsy results) the week before I am helping host an event. The event which happens to be about something that most likely got me into the biopsy situation in the first place.

Anyway, the big shift for me has been to try and be kinder, gentler, more gracious... and yet stay my own person. Hard to do when you are in pain.

I lay there waiting for the biopsy, pretending to be under a fancy kitchen heat lamp

The biopsy was really painful, it still hurts as I type this some 12 hours later.

I still have so much to be grateful for, But it is kind of nerve wracking to be in my position, again… you know, waiting for results. Not the most fun place to be.

Anyway, after my ridiculously painful “procedure” I yelled out “fuck, that hurts” and immediately apologized and lay on the exam table, in tears, for a while. The nurse practitioner who took the biopsy was so very kind and seemed very distressed by my reaction.

I was pretty shocked by it too. It was, however, really painful. I have had biopsies of my girly bits before, without any numbing agent, and it was nothing like this.

At one point, during the second “grab” for tissue I screamed out “oh fuck that hurts”, and then immediately apologized. I am generally not one to curse much… I was embarrassed.

I lay on that exam table, tears streaming down my face, trying to get back to a normal breathing, staring at the bright light above me wishing there was something like a rainbow pooping unicorn to look at…

The nurse practitioner held my hand, asked me how I was feeling, helped me get some of my ibuprofen and drink it down. She seemed very concerned. All very kind considering that she had just learned she would be speaking at the HPV movie thing and that I was involved.

After my breathing got back to normal and the tears stopped falling down my face, she told me to lay there as long as I needed. She, and the other NP with her, quietly left the room. I lay on that exam table, and the tears came back.

It was a pity party I suppose. I lay there crying and trying to remember to be thankful that this was an experience in which I had had tremendous luck. No chemo. No radiation. a tumor the size of a grain of salt.

I lay there looking at the light above me. Trying to make it something more than just a light, making a distraction from the pain in my internal surgical site and the pain in my heart.

My heart did hurt, I had a vaccine preventable disease.

Let me say that again, I was diagnosed with a vaccine preventable disease.

One that would have prevented everything, a sub-total hysterectomy, worry, agony… and today’s darn biopsy.

It is a vaccine preventable disease.

Granted, I was born before this miracle vaccine was developed. But it is a vaccine preventable disease.

And as I ran through a list of people I do not particularly care for, not one of them and not one of their children were eligible for my wanting them to suffer what I had suffered through, I AM suffering through.

Vaccinate your children. In some cases yourself. Your boys. Your girls. This alternative is not fun. not fun at all. The HPV vaccine is good for kids aged 9 to adults aged 26.

It is a vaccine preventable disease.

..

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 17 - 40 days of writing - procrastination, anger, and trying to let go

I have had my paperwork to fill out for my upcoming oncology appointment for over a week.

It was on the floor for several days, then I put it in my work bag to take and complete on a break, but it still is in there. It is not filled out.

I have to fill it out this weekend. 

I want to avoid this whole thing. It is all encompassing. It permeates so many things.

***

An email sent to explain why I have to turn over some of my volunteer efforts and how I would like to see them handled gets forwarded without thought to the information contained within. People   who see that email decide it is OK to come up to me and tell me the email has been forward and mentions of things like "your condition" and "your health issues" permeate the conversation that she thinks is acceptable to have in front of my son. 

I want to know why everyone thinks it is appropriate to think it is a good think to talk about this in front of a child. 

Others have done this, talking about my cancer in front of my son.

And they can frolic away thinking they have been so good and noble and all because they got to tell me they are concerned while I am left with a concerned son, who has since started throwing up at school (again)... something I believe is tied to stress and concern.

And I want to yell at these well meaning but stupid people; "Why the fuck have you decided you can make this more complicated for me and then think you are so dammed just and gracious?".

They are so blissfully unaware. I have to let go but as I deal with a son who I am trying to convince that I will be fine and nothing is wrong and because he dwells in silence from not understanding what is going on has no idea of what questions he needs to ask and I can't know what I need to address.

I don't know how to tell these people that they have been wrong in how they handled this. I am not even sure that I should. I know that if I would do something so thoughtless that I would want to know. but I don't know how to be gentle about it.

I wonder if this is about displacing the anger at the way my body has betrayed me towards others. It is hard, and confusing, and ever so extremely frustrating.

I recognize it goes both ways, allowing what will continue I mean. Do I allow myself to dwell in my reactions or do I allow them a lesson learned so that they can learn from their experiences. 

Who needs the most of my energy?

How do I travel this road gently and with grace?

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. 

Day 15 - 40 Days of Writing - Poetry

"but in the end

if we're lucky

we'll have the love 

of a precious few

maybe the ability to stare

death in the eye"

~ Richard Vargas

I am not shy to say that I loathe / hate / dislike  am ambivalent about poetry. OK, OK... Most of it. I love Yeats, and Keats. And Robert Burns. and a few isolated bits and pieces from others... I love the poems that Doralice puts on her blog... they are pretty [insert expletive] awesome... but really not much more. I only own poetry books that people give me. I have never purchased a book of poems.

If you navigate to my previous posts from 2011 you will see my desperate and unsuccessful attempt to try and find the magic in poetry that so many postulate that it has... (the posts start with "My favorite Line is.." if you are curious).

I even took a Coursera course to try and get it, figuring that I was reading them wrong or something along those lines. But, I found so much of it to be sad and pretentious and boring and far too much work to enjoy.

Maybe it is that I prefer Hemingway like poets, meaning that they use simple images, words, phrases, and images that make conjuring up the magic story that poetry can be, so seamless and easy.

Is this really true?

Anyway, that line above appeared in my feed on "The Facebook". 

The whole poem can be found here.

So, I know now that what it is is that I am not a fan of most of the post modern poetry, I love the romantics, the ones who use and understand words with so much more grace, who don't try to fray you out of feeling a place in our world, I don't like the ones that push you into spending hours trying to decode what in the hell they mean, that make you feel like you are sitting an a very uncomfortable perch as you try to find meaning in them, that seem haughty and petulant with words meant to tease the reader. Those, I find difficult. I can't read them without wanting to throw the book they are written in across the room.

I don't need a poem to make me feel good, I can be pushed to sadness, and anger, and any other emotion but I need to connect to the words. I fight bitterly to do that in those times when I have sought to read poetry.

But that makes me ask, what makes you tick when it comes to poetry? What poems do you love? what poets have inspired you enough to purchase a book of their poems? If you write poetry, what inspires you? Do you feel ridiculous (exposed, vulnerable) when you do?

I am just trying to understand.

Day 14 - 40 days of Writing - Colour

A family friend keeps crossing my mind these days.

Her name was Ilza Hahlo. She was born in Vienna in or around 1908. She grew up to be a textile designer and designed costumes and sets for the opera there. She came from, what I assume to be, an affluent family. She had access to resources many did not. As a young girl she and her sisters had some warts on their hands treated by radium, by the infamous Madame Curie herself, I was told.

Of course, it must have been so exciting to be treated by someone who was revolutionizing the world. There was no way of knowing, I am sure, what the after effects of such a procedure might be.

Ilza eventually moved to New York and tried her hand at textile design stateside. She really did make beautiful textiles.

One of Ilza's textile designs

Somehow she ended up in Arizona, which was our luck. She was a beautiful woman when I met her. We also knew that she had cancer when she came into the family friendship fold. It is assumed that her cancer was the result from the radium exposure she had as a young girl.

I recall one time, as she and my grandmother visited each other one bright Arizona afternoon, hearing Ilza tell my grandmother that as her illness got worse, her colours got brighter as if she was trying to bring all the goodness in light in and shut the darkness and pain out,

This has been running through my mind a lot these past 13 days. There is a darkness that descends and while the pain I currently feel is the result of the last biopsy procedure, there is something else there. It has hints of so many things, despair, anger, fright... to name but a few.

Managing those emotions on a daily basis is very new to me, I have been made aware of just how happy I was/will be. What an unspeakable privilege this happiness is. It weathered through me through a serious chronic illness (valley fever that symptomatically lasted one over year) and the darkness of being on bed rest for a great amount of my pregnancy.

What is so different now. I think it may be that my own mortality is coming to rear it head in front of me. Suddenly beautiful things mean so much more;  the goofy faces my son makes as his face matures from little boy to what it is now, the bright colors sweeping across the sky of a morning sunrise.

Subtle changes in myself too. The other day I ran across a nail polish set my mother had given me with wild and bright colors as I tend to prefer for my pedicures. I pulled the light teal color bottle out from the set and painted just one finger nail with its bright pastel hue.  I can't stand to have my nails painted, but some how this one in bright green, seems to be less of a bother. I smile when it catches my eye as my hands wave about as I talk during the day.

I also chose to wear a pair of red pumps, though I am not wearing a stitch of red clothing. I am wearing blacks and browns, but on my feet are these bright red shoes. They invoke my grandmother, as if I am asking her to guide me as I walk this new path.

So colour has taken on new meaning, bright patches of it to cross my path, much like a brightly plumed parrot stands out as one walks through the mass of greens that are everywhere under Amazonian jungle canopy.

Day thirteen - 40 Days of Writing - Obsession

I loved the way Obsession for Men smelled (when I was a teenager).

Yesterday, I obsessively read my pathology report. And by obsessively I mean that I read it repeatedly for a 5 or 6 hour stretch of time. I read this two page report and felt so much that it was as if my life depended on it. I would focus on one part of it, set it down, ponder it, and then come back to it and re-read that section. I would then set it down. Then pick it up and read the whole thing again. Focus on another section and repeat this process all while watching the utterly mindless and unbelievably mind-numbing Vampire Diaries on Netflix as background noise. 

Thankfully, I am done. I think. I don't really want to read it any more. My medical school stint reared its virtual head and I gained that understanding that I was looking for, picturing in my head the sizes of the different samples, trying to picture them as I read the descriptions. These three dimensional images rotating in my brain and looking at them from all directions. My brain would form these hologram like images as I studied each section of the report and the three samples in question and I could twist them to try to better understand the height and width and depth in hi-fidelity color based on the descriptions of the stains they used. My brain hadn't thought this way for a while, it was both exhilarating and exhausting.... and all while not focusing on the screaming absence of the words "clear and present margins" and breathing deeply and heavily at the places that stated that the "extend ... to the margin". Wondering then, how much further they could have gone in order for me to be able to read those words I kept hoping to find.


That those two black and white pages that my GYN faxed to me contain the key information about what is going to happen to my life for the next few months (years, too) is a bit mind blowing. It is like the home pregnancy test I took when I was pregnant with Squink, something so small serves as such a huge symbol of GIGANTIC changes that are about to come.

It just seems, in a weird way, that these symbols of huge life changing moments should be different somehow. Maybe. It is also just amazing how simple things reveal so much. I wonder what the pathology report would look like if I painted it, applied rhinestones... or gave it a tiara?

As I woke up today and wondered what inspiration might come my way in terms of what to write for this round of 40 Days Of Writing... all while pondering how I spent my day yesterday - and hoping that I wouldn't be so stuck on the diagnosis and the "C" word...  when, I thought that part of this process of managing a diagnosis like this is that there is an element (or time period) of obsessing about it. Trying to get into its skin, wearing it and figuring it out... especially in those times of waiting (which frankly sucks the most of anything so far).

It all makes perfect sense, in a way. Today is another day.

Day 12 - 40 days of writing - managing vulnerability

Vulnerable

I am feeling so very vulnerable.


vulnerable
/ˈvʌlnərəbəl/
adjective 
1. capable of being physically or emotionally wounded or hurt
2. open to temptation, persuasion, censure, etc
3. liable or exposed to disease, disaster, etc



Let me be very clear. I don't do vulnerable. Rather, I don't like to do vulnerable myself. Support vulnerable I am pretty good at. 

This is vulnerable:

I am not that.

But yet, I feel so exposed.

I suppose there is this thing about letting go. My whole life I have loved fiercely, family, friends, the underserved among so many other things. And there is something, with a couple of rare exceptions, that is very one sided. In most of the cases (outside of family) love not expected to be reciprocated. In terms of friends; I can love them as much as I need to but since I know how variances are in the complexities of human relationships, I haven't really expected or even needed them to love me back.

Until now, I suppose.

I received an email from someone I think is wonderful and call a very dear friend and in her email she said she had called me a best friend. Oh, I was struck by that. I hadn't known that she had classified me in that category, and I was deeply, deeply touched and very grateful. I am better at the subtleties of friendships with men, and not so good at them with a grand preponderance of women.

But, it feels so vulnerable to allow oneself to be loved in this kind of situation. At least, for me, in terms of relationships outside of marriage and genetics.

As an aside, I made a variation of this Ayurvedic Dal recipe, it is a family favorite that is rich and complex in flavor but so hearty and filling. I even quadrupled the basic recipe (only one can of coconut soup, and some other changes). The way the currants plump up and complement the curry power is like a bit of food heaven.

Normally, I make brown rice but for some reason I bought some jasmine rice. In an attempt to make rice Ecuadorean style I followed the way Carloti (our live in maid/nanny) showed me...something like this recipe, but letting it sit longer so you get a crispy bottom.

There is so much comfort in comfort food.

Day 11 - 40 Days of Writing - ten years ago my cervix failed me too

I realized that I have been blogging for 10 years, starting around this same time of year. There are earlier posts but those were after the fact. The linked one was my first and the one before it was an email I sent to friends on that day (he day I retroactively published it).

The huge irony is that it was about my cervix as well, granted in that case I also gained a son... instead of in this case where it is about losing my uterus.

It is ironic, I suppose... to have started this blog because I was in a dark place. Bed rest, as romantic as it may sound, was amazingly lonely and dark.

And now, these ten years later (almost to the day) coming here and writing again from another dark place, that has a very different feel to it... a deeper kind of vulnerability, perhaps.

Jean Jacques Henner - Solitude

Day 10 - 40DOW - tired

I'm tired.

I am lucky.

But, I'm tired.

Part of me feels like I should want to scream.

But, I feel tired.

Another part of me wants to curl up and sleep through this... wake me up when it's over.

I got my paperwork for the oncologist and I left it sitting on the floor by my bed.

CONQUER

CANCER

It reads.

I am curled up on my bed staring at it. 

It looks so optimistic.

Wondering if I'll get turned away because I don't have any "films" to bring with me, just my sad little 2 page pathology report.

Are the 18 days I had to wait going to get pushed to more.

This waiting is painful.

I'm trying to be patient.

And grateful.

And I am...

Really.

The sweet notes and efforts are so unbelievably touching.

But I'm also angry.

At myself.

And scared.

For my loved ones.

And tired.

So very, very, tired.

Day 9 - 40DOW - a little conversation I want to have with men

I think the one thing that has been hardest on me is how the men in my life have handled this.

First of all, let me state this is not all the men.

My husband has been über fabulous; he has been there for me and has been a solid rock and really been wonderful and supportive and asked questions and made me feel like he is in this with me 100%.

It is the other ones.

Like My Boys   - sigh.

I mentioned the one that talked about himself after I shared the news... though he has sent a note back in which he sorta says one brief little thing and proceeds to write about himself for three or so long paragraphs (that is how he is). Another, that found out through his wife, sent a note to my husband saying that he knew. For those two, it was perfect. It fit their personalities and I am so glad. 

I did share with the other boys, and nothing. I am hoping that they might be out of town for a very long time or too shocked at the news and feel kind of helpless and not know what to say or even do. I mean there is something so very personal about talking about your lady parts with a man, I imagine it might be embarrassing or something along that fine continuum for a man to talk about a female friends girly parts in such a deeply personal way... even if you never utter the words cervix, ovaries, uterus, vagina.

The other three male friends that I have told have been able to reply. One with a sweet message and encouragement and stories of how his mother has gone through something similar. Amazingly supportive and wonderful. Another apologized about what I am going through and then turned into a lump that seems to want me to take care of him. The last proceeded to offer a bunch of medical advice based on his experience with his mother and her ovarian cancer.

I can't imagine what it must be like for a male, to hear from a friend that her girly bits have failed her in such a dramatic way.  I am sure that saying "I am sorry that your cervix is going through that" just seem too ridiculous for a male.

So, if you are a male and you have a friend (or loved one) who has been diagnosed with a reproductive cancer (or any cancer) here is some advice based on what I have learned so far;

• If she tells you, respond. Even if you just say: I am so sorry you are going through this. I don't really know how to respond, but I am here if you need me. Repeat this on occasion if you are still speechless.

• Prepare yourself, think about times when you have been scared, or ill, or going through a difficult time. What did you want to talk about? What did you need? Consider your friends personality; is she forthright or private and talk to her. 

• Tell her you are sad that she has to go through this, acknowledge what she is going through.

• If possible, invite her to lunch or dinner or breakfast or brunch, and listen to her if she accepts (and let her know it is ok to say no). Ask her if she needs a hug, and talk to her about things you know interest her; books, plays, etc. Reminisce the old times, make her laugh at how silly you both were when you were younger if your friendship has lasted decades. 

• Don't continuously pick up and stare at your phone or allow other distractions when you talk to her, especially if she is talking about what she is going through.

• Let her know you are interested in her health, and are willing to help. If she is alone, ask if she needs help putting in light-bulbs or other small house projects. If she is married or living with someone and you know them, ask if you should take her partner out and get his mind of things. If you offer, and she accepts. Follow through. 

• Be honest about your feelings.

• If you have a history of doing things together, plan something she can look forward to.

• If you have shared friends, ask if she would like you to let them know. Respect her answer.

• Try not to offer medical advice. Don't send her information on protocols and options don't be upset when she makes decisions that you find odd or extreme or even not extreme enough. 

• Most importantly, continue the friendship... knowing there is a support system out there for her is incredibly important (even if she doesn't take you up on the offer)

I hope that I have given some pointers that are helpful. 

These are ideas based on my experience so far. I am sure that there is some variety among women who are going through this and I am sure that Google probably has far better advice available if you search. 

IMPORTANT UPDATE:  Please refrain from talking about her disease around her children. She may choose to really limit what the kid/s know during this time since it can be super scary, and needlessly so.