Sunday, October 26, 2014

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.

Saturday, October 25, 2014

Day 25 - 40 days of writing - small things and gentleness

It is amazingly easy for me to love.

Being loved is ever so much harder.

Emails, texts, phone calls and conversations with loving support.

Prayers, whispers, meditations, sending of light, energy, vibes… all in my name.

A bouquet of flowers at my doorway.


A tin of gingerbread cookies

I sit in a whirlwind of these expressions of love and am so humbled.

It's hard, I am not one to depend on the kindnesses of others.

I was chatting with my mentor, an allomother. 


Strangely, it is (at this moment) much easier to let go, to give in to this process. Gratitude is just so much more deeply felt, I find that in order to respect it, I need to let go of my deeply ingrained habits of not wanting to inconvenience people I care about.

So, this is about a lot of letting go...

 and wearing my pj's for a while.



Wednesday, October 22, 2014

Day 22 - 40 days of writing - wings

“ You strode deeper and deeper
into the world,
determined to do
the only thing you could do,
determined to save
the only life you could save.”
~ Mary Oliver, from "The Journey", in Dream Work (1986)


So very true. that poem above.

A poem. Ironic, isn't it?

The waiting is over. 

My surgery is scheduled. 

I really like my oncologist. He is a gentle man with a mysterious air of steel reserves that make letting him work with my choices a dream.

I have power over this process, power that the oncologist has given me. This is special.

I have received so many gentle gifts in the words of people I know.

It is so hard to be humble when one feels so betrayed by their body.

I recall the days when I worked to help get Arizona to use the funds allowed to states through the Breast and Cervical Cancer Prevention and Treatment Act of 2000. There was a community lobby day where people went to speak to legislators about the importance of these services.  One of our FEMALE state legislators listened to the impassioned plea of several women who were lobbying that day, many of whom were cancer survivors. The FEMALE (in caps because I am still incredulous) told them that she was unable to support the legislation they were requesting for her to support because "only women who are loose and get abortions will get breast and cervical cancer".

Thankfully, we were able to pass this locally. 

Like my life right now, there is nothing coherent about this post. 



The Bloggess pinned it to her Pinterest account

I miss my old life. I miss the tendency towards being boldly dangerous and striving to do noble things. I miss my light, my ability to frolic. I miss being fanciful, and feeling beautiful, and also of being fearless. 

I miss my wings.


Sunday, October 19, 2014

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.




Saturday, October 18, 2014

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?


Friday, October 17, 2014

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. 


Thursday, October 16, 2014

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"

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.

Wednesday, October 15, 2014

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.

Monday, October 13, 2014

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.





Sunday, October 12, 2014

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




Saturday, October 11, 2014

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.

Thursday, October 09, 2014

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.



Wednesday, October 08, 2014

Day 8 - 40DOW - gratitude

I've been sick the past few days. Fever and runny nose, you know that route, right? 

The thing is that when you're one week post op, you shouldn't take risks, especially as I move on. Couple this with a change is what I will call discharge. I called my super awesome GYN. He had me come in to make sure everything was ok.

He was not with a patient when I walked into the back office area. And he must have seen me stepping on the scale. I heard him say, the good news is that you look good. I smiled and told him that I was indeed feeling better, but we had different ideas on what good meant. We laughed. He came over and said that he was really glad I called, that most patients would just dismiss the fever as being the cold, and that he was really, really glad I called.

When he came in to see me, I got to ask the big pressing question in my head which, ironically has nothing to do with cancer.

Can we take out that IUD you fought so hard to preserve at my last biopsy, and if you do, can I keep it?

When I go back next week we will remove my IUD and I will get to keep it. I figure that since I actually kept my cerclage (it is a link to a link, so if you don't want to see the knot that held me shut, you don't have to click all the way through and just stop at my picture of Squink) that I wanted to keep my IUD as well. Symbols, if you will, of the two times my cervix failed me... or rather, of when we failed each other.

This exchange actually led to a very interesting discussion of complementary medicine. I really have a wonderful gyn.

So, gratitude... yes. Aside from whomever is coming to see this blog (and it averages about 1 person per post (which may be me since I am writing this) I haven't really told many people in the grand scheme of things. I have told my family, not all of them just the close and a few extended (a couple of cousins, though not all... I suppose I should do that tonight... though if truth be told the cousins I haven't told are part of the group that thought letting me know that my grandmother had passed away via a public Facebook post was appropriate... so, I figured I could return the favor in some way). 

Anyway, I sent out a bcc email to some folks who mean the world to me and who did not know. While I did not hear back from everyone I emailed, I was delighted with who did respond and what they said. I did send it out to a few males, I heard back from two. That was a surprise, they wrote these sweet gentle notes and considering that they are not sweet gentle men, I was touched. 

I also told my fellow board members of an agency I serve on the board for, they were amazing and supportive. One bought me what she called her Catholic cancer kit; a statuette and booklets/cards of Saint Peregrine, some chamomile tea, and Holy water from Lourdes. 

People who have chosen to reach out with messages of support and love have been so treasured. Phone calls, emails, letters, notes, offers of lunch or dinner and other... I feel so much comfort in their messages and offers of time and help.  One (one of my guy friends) even saucily wrote that they would rather look at pictures of food than hear the news I had just given...

For you k...



I am so very lucky that I am not alone on this experience.

Tuesday, October 07, 2014

Day 7 - 40DOW - Curious George is my new hero


There is something kind of magical that happens when you get a serious diagnosis... You get a new level of patience and tolerance, and you hold closer to what's unacceptable and intolerable.

It is as if one gets knighted and imbued with certain super powers. Probably though, it is just some form of self examination that allows for some serious decision making.

I am not dying, but this may be the closest I get to that in a while. A friend wrote me last night about how I was now in the middle of my "bull fight" and that I had an arena of friends who were supporting me through this. I was struck by their using this metaphor not only because I am a bullfighters daughter, but because there really was some intense truth to what they wrote (and also because they hate bullfights so I was surprised to see them use this).

Without delving into a treatise on bullfighting, I will say that the bullfight is not about the torero, it is about the relationship between the bull fighter and the bull, each playing into instincts and their very special mortal relationship. They are each trying to figure the other out, and while they are separate, they form a symbiotic relationship. I am here in this ring, and I am that relationship, the instinct is driving me to examine my surroundings, and as they said, I have a cadre of people supporting that.

Which brings me to something else that has been swirling in my newly seriously introspective mind.

I recall the day when you heard that someone had cervical cancer that a pretty loaded assumption was possible made:

The woman (since men do not get cervical cancer) was a loose ho-bag and had proverbial round heels

I have heard this whispered amongst the most gossipy of people even to this day. So, yes there is a certain fear of assumptions that people (stupid people) may make about me. I know that I have never been a loose ho-bag and I most certainly do not have round heels. And I don't think that what is happening is the direct result of any karmic like indiscretions I may have made.  I am a human with a cervix and it has betrayed me (yet again).

I sit here newly diagnosed with something the most heinous of gossips use to tear people down and between that and the whole mortality associated with the word cancer causes for an astonishing amount of reflection. Self-reflection certainly, but also about the world I live in; the friends I have and thee ones I had, the adventures, the quiet moments, the rage, the gentle, the sweet peace when my son rests his head on my lap, the Ebola crisis, our southwestern drought, or awfully separatist politicians, the atrocities in the Sudan... all these and so much more... they have become different in some ways now.

At the root, though, these are extensions of curiosity, which is a true animal behavior.  There is something primal about trying to understand what is happening around you.  A certain fierceness comes, priorities seems stronger and there is a certain curiosity that reigns over me. It is like an adrenaline rush, but in a very sedate way (much like the adrenaline the human and the bull need to control when in the ring). I consider how the social animals (outside of humans) interact with each other. Elephants are amazing at this, but so are so many other animals. And there is something beautiful in that... in feeling close to that which unites all of us animals as we try to make sense of the world around us. It connects me to my surroundings, makes me feel a part of something whole and those who think this kind of thing (introspection) is something selfish, elitist, or wrong are just temporarily disconnected from the life death continuum.


Monday, October 06, 2014

Day 6 - 40DOW - another stage, perhaps.

In Old Norse the raven was a popular symbol and represented the power and wisdom of the mythological god Odin who would strike fear into the hearts of even the bravest warriors with his two fearless ravens sitting on his shoulders.


Me Hello again, 3:00am. You kind of suck for me right now, though I recall the days when you were fun and I was much more invincible.

I've moved into the next stage. Or is it another stage?

It happened the second I hung up on the last person in my inner circle.

The very second my finger pressed the hang up button.

I felt stupid and ridiculous for all the crying and sad.

This is stupid, I thought to myself.

You're trying to get attention, I scolded myself.

You are making more out of this than it deserves, my inner voice admonished.

I felt ashamed for my tearful calls and emails to these people who mean a lot to me. 

My brain rattled off a list of the reasons that supports its claim that I am swimming in ridiculous.

There was a tiny voice telling me this was all OK. These are scary new words and it's ok to be scared. But tiny voices are easily shut down.

Is this denial? Acceptance? Are there even progressive emotional states after a diagnosis like this, like the stages of grief?

I know I am not going to die, so why all this fuss? Is it really all that ridiculous that I want my mother and aunt with me, even if this causes them even bigger inconveniences? That I want to monopolize their time and play paper dolls with them, like I used to do when sick and at home as a child.

I always loved paper dolls from other cultures


And the vestiges of anger are poking through in those who mean well and tell  me what to do, or discount my thoughts on what I know may be my treatment options. This is my damned body, not yours.

Is there an angry denial phase? Am I really angry? Am I in denial?

I hate that as my body recovers from the cone biopsy, the aches and pains tease me into thinking that the cancer has taken control... that it has, in a blind rage at the attempt at its excision, rallied like a fire breathing mythical beast and waged a war inside me that I am slightly oblivious to and thereby allowing to grow with wild abandon as I navigate the days until my oncology appointment.

I decided that if it should have a name that somehow the notion of carrion should be involved. I have decided to invoke the ancient Valkyries of my genetic past, the ones that were ravens that became the ears (thought) and eyes (memory) for Odin, that cleaned up the battle fields by eating away at the carrion that resulted.

I want those ravens to remove my carrion and bring me the wisdom to do it bravely.





Sunday, October 05, 2014

Day 5 - 40DOW - I don't have Ebola

Restless nights provide for interesting lucid thinking. I'll start from a doze-like-state with some thought usually a random one.

At this point, it's 3:00 am and I am snuggled up in our Arizona pines under a heated blanket. I have arranged for a Skype call with my sister in England for later. But what woke me was the thought; "I don't have Ebola". Which isn't that far off since we have a gentleman up here in a self imposed quarantine after his return from a mission trip to Liberia. News link


It's also interesting that I've had to, on a couple of occasions, give friends permission to worry for me. When something scary happens to someone you care about it can be hard. But it's tough to understand since I've always felt the right to deal with these things as my body dictated. I'm also surprised in the ever slight shift in my self. I'd consider myself to be nurturing in many ways, I tend to love people fiercely when something about them speaks to my soul, and as I manage the phone conversations and emails, I feel decidedly more nurturing to them. It's very subtle, but it's something I've noticed. I wonder if it's the result of the emotional exhaustion or just an internal shift and I wonder how temporary it might be... this urge to tell the people I love that are family and friends to give in to how their body is telling them to react. Maybe it's because I see love in their reactions and I'm honored and humbled by its reciprocity.

Maybe it's because it's now 3:30 am and I need to get more sleep.


Here is a picture of a bull with a B on his butt.


Saturday, October 04, 2014

Day 4 - 40DOW

Emotionally drained.

Moved through the last phone calls, began the personal emails and then prepared for and began to draft the mass email to friends whom I respect. 

At this point I became exhausted and took a several hour nap.
 
People, so far, are being gracious and supportive. Except for the one friend who heard the news and (not unexpectedly) proceeded to talk about themselves for 40 minutes. Thankfully, it caused me to laugh in some form of delight.

A last minute trip north, just to get out and get a break. 

Everyone on their respective devices, random conversation about physics, religion, books.

Two more personal contacts left... 

I feel better today.



Friday, October 03, 2014

Day 3 - 40DOW

My prima gave me this.


I made it through the first night with the "C" word.

I slept better than I thought, but I think I woke up more often, though my fitbit says otherwise.

There is a part of me that wishes I did not have to tell anyone. And I mean anyone. That I could forge through alone, because, frankly, it would be easier for me mentally... relationships take an awful amount of energy and I suppose I want to save it (energy) for what is important,

But, I can also admit that I just won't be able to go through this alone. I need my team. I have the core. I am glad for that.

I hate very much, though, that I find that I break down in tears, and tend to do that when I am rummaging through closets and cupboards. My friend says that she did her crying when she was in the shower.

I hate that I keep telling my son that I keep getting dust in my eye. Because I just start crying randomly... even when thinking about red-lights and changing lanes.

But you want to know what scares me the most? Telling my friends. My close friends. The people whom I would want to know if something difficult/similar befell them. I am struggling on how to tell them. Family is easy, I know they will stick by me. Extended family is easy, I know they will manage in their own way. Strangers (like my son's teachers or parents at Squink's activities) are super easy, mainly because I frankly don't give a fuck what they do.

But those who fall in between nothing and genetic filial obligation... they scare me. I have started the process. I have called most of the people that I truly value, the ones I hope I don't lose. There are a few left, but they have birthdays and other events going on, and since I don't really know what is going on with me (in terms of what is going to happen ) and won't until I see the oncologist, it can wait.

I wrote a friend who is on this same track right now and asked what to say, what to do, did anything work better...? And she confirmed my fear (which I knew but I was hoping that my awkward introversion was at play) that there is no right way.

She also touched upon how there is this period of not knowing, and that you don't want to fling the diagnosis out, but then secrecy happens and people get nervous. So I think I am going to ask if I am free to emulate in a grand unveiling, if you will indulge the flourish, of what is going on with me.

I am starting to feel like I am fitting pieces together, the pieces of what I need and want in order to move through this. I know I want to proceed with rose tinted optimism. I consider myself to have my feet firmly planted in the ground and am aware of all sides of things, I want to get through this without wallowing in dark and negativity that is generated by other people. Why, do I want this? Because I know I am going to go through all these different stages and I won't allow negative Ned's and Nelly's" to bring me down... I want you to lift me up, to sing with me, to smile, and say "Blair, this will all end up OK".

So, I suppose not only am I afraid of the friends I will lose because they are burdened by a fear too great to be with me through this, but I am afraid of the friends I will chose to lose because they are too negative or pessimistic people to be around. I am still trying to come to terms with this.

I still breathe.



Day 2 - 40 DOW - was pretty shitty

Not my cells, but similar enough cells


Cancer

in-fucking-situ (I hope)

A cause for celebration. Really. They say.

But holy fucking shit, calling an oncologist for an appointment for yourself is something I wouldn't wish on anyone, Not even someone that could use a strong life lesson or a swift kick in the butt.

You get that call. The one that gives you the pathology report and tells you next steps and it is so heavy and burdened that the air gets thick and it is almost impossible to breathe. Partly, I wonder in retrospect, if is so that you don't miss a word about what you are being told.

The call to the overly cheerful oncology office to book your appointment.

The calls to those you love. Your husband, your mother. You aunt.

Contemplating how to make the calls to your other loved ones; your father, your cousins, your friends.

Return calls. the news spreads. You get calls from your brother, A message from a professor from when you were back in medical school (who is now a close colleague to your mother).

Priorities mulled.

Pathology reports faxed. scanned. emailed.

Decisions to be made,

Priorities re-mulled.

What do you tell your young children so they can navigate the stress they know you are feeling without giving them scary words that will make things worse.

What do you tell your friends. How do you tell your friends. Do you tell your friends? It is easier to tell strangers.

How do you navigate not knowing what the oncologist will say without Googleing yourself sick.

And again, priorities re-mulled.

Fighting the tendency to blame yourself.

Trying to be strong because you need to be for others, because the last thing you need is to take care of someone else when this is about you (and not them).

Trying not to listen too closely.

Wondering if you will lose friends. Knowing you will (I've worked in cancer, it happens) wondering who it will be.

Wondering what do you do. Do you burden friends with the news?

Having to deal with the part of myself that feels socially awkward and introverted.

Remembering to breathe.

Philip K Dick said that cancer was "the process of creation gone wild...".

Thoughts of prudence and of recklessness. 

The mantra of thinking "it could be worse" repeatedly. intermittently. nauseatingly.

Wednesday, October 01, 2014

Untie the haggis and why wear pants - 40DOW - Day 1

I spent yesterday at the hospital. The hospital my son was born in. The hospital my nephews were born in. The hospital my half-siblings were born in... and some other some such relatives.

This time it was for me though, I had to get some girly things taken care of. Which reminds me, ladies... get your check ups.

Actually, that reminder is super good place to start... because that is where this journey started.

A friend posted about getting a cancer diagnosis on Facebook, and what a crazy ride it had been. I read her post, with tears in my eyes and realized it had been a few years since I had done mine.

Actually, it was more than a few years. That is what I found out when I called the doctor to schedule an appointment.

Not a smart move on my end.  Things like DES are a part of my history. I really should have known better than to let so much time lapse, but I did.

My luck is that I went in time. But I needed some work. and I got it.

So ladies, get checked. Men, make damn sure the women you like (even just a little but whom you know well enough to enquire about their vaginal health) get their lady bits checked. Regularly.

But I had fun at the hospital. If such a thing can be fun.


I hate IV's... hate them, hate them, hate them!

I invoked my grandmother by going home in a muumuu that my aunt had bought for me... a gorgeous caftan of multiple colors and GLITTER!


I can't even begin to describe its awesomeness.

I took pictures for as much as I could. (for the record, I love selfies, I love looking at them and I am OK with taking them and I am especially fond of what I laughingly call "we-we's" but most people refer to as "groupies".


My favorite we-we. ever. but only sorta, because Squink isn't in it.

For some reason we began referring to my cervix as my haggis and made a plethora of jokes about them that involved playing bagpipes and other such hilarity that probably only seems funny if you were a part of the conversation. The whole haggis thing was compounded when I get home and after much sleeping and woozying find I got an amazon email that was, ironically, all about haggis.


An email about haggis.

My arm bands had the colors of the flag of the countries I was born and grew up in... in spite of my aunt insisting my blue was really Greece (it isn't).


Amarillo, azul, y rojo (and NOT GREECE) and featured on my Instagram account

My aunt, brother, and husband picked up Squink and so he was there when I got out of recovery...

I can't tell you how much joy I felt in knowing that his little body was there waiting for me. And when he saw me he was sweet and gentle and it was beautiful.

And then I found the glitter from the muumuu had managed to get on everyone and you know life is good when you are glitter bombed. Right?



Excited that a caftan experience awaits at the end of this!


Why wear pants when you can wear a muumuu? 
~ Beth Ditto