Messages from my mirror

The face is the mirror of the mind, and eyes without speaking confess the secrets of the heart.
~St. Jerome  

Today I scheduled a follow up eye appointment for October.

As I opened up my calendar I realized that the four months would land on the day before I had my surgery, which was when my eye problems started.

In the eight months since my life was spared and my body was torn apart in order to do that... a lot has happened.

One of the things that I find most striking is that my eyes have changed. And I have been trying to figure out what it is that I have noticed.

I am not sure when I started to think my eyes looked different to me, but I recall wondering if somehow my irises had become lighter or cloudier in color. Cataracts at my age?

The crux is that they don't look happy to me, they looked pained, tired, and perhaps even scared.

I don't know that I am any of those things, but I am a very different person than I was in 2014 B.D.

That B.D. is Before Diagnosis.

This process has been hard, but the hardest part was learning to stand up for myself. Standing up to a mother and aunt that I know love me, but who felt that age gave them some sort of prize that included tearing me down... I am sure that is (was) not their intent... but as they threw things at me that I would have previously have bowed my head to and ignored but in the middle of my fight to feel whole again seemed unduly cruel coming from them. As I said, I am sure they did not mean it, but they still hurt me very deeply on a level that a doctor could not touch.

I think, perhaps, that is part of the cloudiness that I see in my eyes.

It is also navigating my health after a pretty invasive surgery, the unwanted weight gain, the change in shape, the pain, the aches... the health of my eyes included.

They are better now though, the scars left on them through repeated injury and a misdiagnosis are healing, almost gone. The burden of the change of lifestyle for them is permanent... eye drops for life, they said. Keep them moist, they said. I will, I reply.

But when I got home from my appointment today, I looked in the mirror and still saw that certain kind of cloudiness, and I hoped it was not permanent.

Then there is this.

“Behind these eyes there is a girl trapped within her pain – a girl feeling all the emotions of anger and sadness. She’s fighting for a way out.”
~ Chimnese Davids

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)

Invincible summers and calculated acts of kindness

“My dear,
In the midst of hate, I found there was, within me, an invincible love.
In the midst of tears, I found there was, within me, an invincible smile.
In the midst of chaos, I found there was, within me, an invincible calm.
I realized, through it all, that…
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.

~ Albert Camus

It was late on December 20th, 2014 and I was still recovering from my surgery.   I read an email from my friend Gail in which she asked if the Junior League of Phoenix (JLP) would be interested in hosting a movie screening. Gail works at The Arizona Partnership for Immunization.

It was this movie screening:




I watched the trailer.

I called her to talk on the phone.

I pretty much told her that I didn't know but I would find a way.  We talked about how I could manage this in my capacity as the member training committee chair and we came up with a plan. The next morning I sent out some emails to my Team Leader in the Junior League and my co-chair. Both were supportive.  Gail and I discussed venues and what options we had. We decided that my cousin, who is Lead pastor at Scottsdale First Church of the Nazarene, would be a good person to approach. So an email went to him. I received immediate replies and all were supportive. 

Here I am 2 months later. The JLP team lead I serve under, has allowed for this to become a bigger deal within the JLP.  More partnerships have developed and are included below.

Our goal is to provide one large movie screening with a panel that is targeting about 200 viewers. 

If you are local - please save the date:

Date:
Thursday, April 9th 2015

Location:
Scottsdale First Church of the Nazarene
2340 N Hayden Rd, Scottsdale, AZ 85257

Time:
 5:30 - 9:00 pm / Movie starts at approx 6:30

Tentative Agenda:
Sign in opens with a meet and greet: 5:30
Movie and topic is introduced and screened 6:30 
(movie is 80 minutes long)
Panel discussion at end of film
closing meet and greet

Community Partners:

Scottsdale First Church of the Nazarene

Junior League of Phoenix

Tapi

Arizona Oncology

AZ Department of Health Services

Genesis City

I am back - with some Calculated Acts Of Kindness (COAK)

Yes, I decided to  come back here. I figured out how to un-subcribe people and did so...

I did that because this chronicles my life for the last 10 years.. and a lot has happened.

But those ten yea

thank you deviantart

rs all had my Squink in them. And even when I did not mention him, it happened around him.

But it also feels like a new beginning and how wonderful that it coincides with the first day of Lent.

So, I am following after Kelli at AfricanKelli with a commitment to Calculated Acts of Kindness...

I will post updates on:

Flickr Pool

Instagram

Facebook

and of course HERE (and on my other site)!!!!

What a wonderful way to start

Peek-A-Boo - I can't seeeeeeeeee you.....

Oh my, how many times did I play that game as a new mother.... There were countless delights in the delight and giggles of my newborn son. I loved watching my son take his turn,  cover his eyes, and then swiftly moving his hands away. Staring at me, wide eyed, with the expression of "Mom, I was here the whole time", laughing as I pretended that I could not see him.

The idea is to learn object permanence.

My brother, when he was young, used to close his eyes when he wanted to be alone (no matter how many people were in the room with him). He was completely convinced (I believe) that if he could not see us, that we were no where near him.

People were and are always present to each other. This is true, even if you adopt some sort of frantic philosophy in which you would argue that everything is not real. That my brother was, in fact, alone and/or there was no one in front of my son when he had his eyes covered.

I thought about these times after I read this article  the other day.

I find humans to be fascinating, we are social beings. There must be some kind of thinking that has an application to technology and how we tend to act towards each other. I mean, why do we act so terribly when we can't see the face of the other... trolls, for example, thrive on this, I would argue that they depend on it.

I've been told that gossip serves a crucial social role for us humans. Gossip moderates our social behaviour... and I think that it applies to this in a certain context. So, imagine if you will, how easy it would be to scold someone you know via text or email if you did not have to see them. One would put their scorn into a few words and be as clear, concise and I might argue brutal... after all we want to make sure the point gets across.

This message puts the other end of the social interaction on the defensive. It is more likely than not, that a series of texts or emails get exchanged with a defensive end and an aggressive end. For delicate social relationships, this is probably not the best way to go about communicating.

This is so hard for people like me who hate talking on the phone. I prefer a text, or an email. I tend to not even want to talk to people. I am an introvert.

This is a modern day reliance that tends to be abused. When I sit on a board or committee, I tend to default to this. I have noticed that feelings get hurt so much more quickly over text or email. I know that I have been on the hurt end. I know I have also been on the giving end.... though not usually in giving of a complaint, but in pursuing a conversation.

So, I ponder the reliance I myself have on technology to communicate my feelings. I am trying to move away from it. Of course, I have this (these, actually) blog(s), they are a public written communication. And my blog is also subject to vitriol and complaint.

Text, email, and even blogs are devoid of any kind of social interaction. When we speak we can at the very least know that the subtle intonations are being heard (even if misheard). When we write, sarcasm doesn't usually translate. When we speak, there is a possibility we can react to body language. When we text, we don't.

So much is inferred through sight and hearing. I can see if the person I am speaking to has outward signs of having a bad day. I can hear if someone is making a joke. And though people miss these cues often when in person or over the phone, we are less likely to miss them than if we text.

In the days of "The FaceBook", Twitter, email, text, instant message... we have lost the physical interface.
If you consider things like Facebook, Twitter, or even blogs you can see  how there is a modicum of backlash. Will we learn how to do this better? 

When will learn to be more gentle with one another? 

Revisiting 7 and then 8 - and perhaps a dash on 9 - Find the Beautiful

Revisiting 7

I suppose my last post was a bit premature, though it was true. It is amazing how something gentle can shift everything, even if it is only temporary.

After my post, I went to a meeting for an organization I belong to. I expected to get lots of hugs and inquiries about my health and my status. I was looking forward to thanking people in person for their kindness, but felt shy about the possible attention.

The hugs were nice, the kind words and gestures were appreciated. I was glad to have gone and it was not as much of a burden to my shy side as I thought it might be,

But at the end, as I was walking away.  One of the friends who was there often for me asked me how I was and I replied with my usual. I am good, lots to be thankful for, one day at a time. She grabbed my arm and said lets sit and tell me what you mean by this one day at a time thing? 

I was stunned, she had latched on the the subtle nuance of such an expression and knew that my words were far cheerier than I felt. 

So we sat down, and I tried to explain that navigating the whole thing is complex. Yes, I fully see that there is so much that is good but that there is still the tough that needs to be dealt with. Being told you have cancer is more complex that I had thought, especially given the provisions that no chemo or radiation is needed, like those somehow would allow (key word here is allow)  someone to feel like shit. Please don't think I am trying to diminish chemo or radiation and that people who have to go through that are somehow exception in some regard... because they actually are exception. What I feel like I am missing is permission to grieve this process and that my grieving is allowed to be more than just sad.  After I feebly tried to communicate these ideas to her, I just looked at the hands in my lap and said, I want to be allowed my pity party, I just don't know how.

She touched my arm and said you are allowed a pity party and I want to be invited, lets go get some wine together soon.

It was so beautiful being allowed to feel this way instead of being held to strict gratitude. My heart filled with something, I would hope it was grace. 

I am not sure she knew what I was talking about or understood what I was trying to say, but she asked and then listened... holy moly... what a gift. She asked, she allowed me to tell her something closer to the truth about how I am feeling, In a world dependent on daily platitudes ("How are you?" - "I am OK") it was mind altering to pass that realm and move in to more of the brutal truth.

It is part of the dynamic between celebrating that I don't need chemo or radiation or that my tumor was so freakishly small AND the whole truth in that it was fucking cancer and it robbed me of some things that I held dear. I am grieving.

I don't think I am headed to deterioration. I know I will be fine, but this is a part of what has happened and is happening to me. I own it. 

“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.”  ~ William Shakespeare

Then 8

After the sincere gesture of my dear friend, I felt more lighthearted yesterday. It was a busy day, work with extra duties, rush to help Squink finish his homework, a school meeting for an exchange program, and cub scouts.

I was too busy to notice much more than the heaviness of my surgery site.

A dash of 9

We all woke up early, and in good moods. I even served Squink some oatmeal and let him eat it in bed. On my way to the kitchen, I noticed how amazingly pretty my orchid plant was. 

It was beautiful. 

Squink was beautiful. 

My family was beautiful. And somehow everything else seemed less important.

Life is beautiful - 6 & 7

Yesterday was tough, it is a tough spot right now. 

In my attempt to find the beauty, I failed... I mean, I had that poem, but I really found it the day before... and the rest seemed average and even hard.

It all, life, feels sorta like that - hard. 

I feel completely helpless in some ways (some very new ways) because I am just in a state... angry, mad, desolate to name but a few and all of them in one big huge swirling mass of emotional baggage.

I have no patience for this kind of nonsense. I have too much to do.

And, people keep calling me back to earth and reminding me that my behaviour is inappropriate. Which adds to this feeling of mixed mass emotions swirling and boiling and festering. Shame, I suppose. I am better than being an angry person.

I have moments of average, and when I see my son or husband I can claim joy. But that seems so selfish, in a way, to allow my son and husband to be my bringers of joy... what a HUGE burden to place on them. Guilt, I suppose. 

I am trying to remember to breathe, to mediate, to pray... but the words that come to mind when I do this are hard, and angry, and as my family reminds me... inappropriate.

I have and see so much to be grateful for, but these crazy emotions are so difficult to manage. 

How does one throw themselves a gentle pity party?

So let me conclude by stating that I suppose that the beauty I was able to find is that (#6) I am alive and (#7) I have people who love me. There is comfort in that. But, there is a tinge of insincerity in my heart with these right now. impatience, I suppose. 

The kind of beauty I want most is the hard-to-get kind that comes from within - strength, courage, dignity.  ~ Ruby Dee  

Find the beautiful 1 - 4

1. Having my mother, brother, and nephews over for a dinner of Wiener Schnitzel.


2.  A gentle and quiet day in bed, watching Netflix and having my husband make some more surprise Wiener Schnitzel for lunch.

Some Wiener Schnitzel being pan fried (photo stolen from Schatzy's "The Facebook" page" - Thank you Schatz

3. Seeing my mom for dinner, drinking a strong margarita with her. Laughing.

4. Getting my first test results back and having them be normal.  

NORMAL!!!!!!!!!!

Dinner with a group of girl-friends. Coming home to a fire in our fireplace.

The fireplace in our living room

“Think of all the beauty still left around you and be happy.” ~ Anne Frank 

Find the beautiful

THAT

Find the beautiful

Yes, that...

is my theme for this year.

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

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

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

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

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

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

Yes, that...

is really my theme for this year. 

holding the darkness at bay

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

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

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

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

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

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

That has been the darkest point so far.

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

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

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

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

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

More thoughts and a tale from my misspent youth

Reflection

Something I do a lot of right now.

As I watch, feel, and notice my body heal from a pretty brutal surgery... I reflect back on my life.

What is so amazing to me is that I have such a wonderful group of people here in my life now. 

A husband who waited on me through the surgery, held my hand, brought me food, made me eat when I did not want to, bought me more thermometers than he should have had to purchase for me as I lay in bed vomiting with fever and chills and consistently losing them to the depths of my mattress and covers, who rinsed the vomit bowl so I could have a clean bowl for the next round, massaged my neck that was sore from throwing up, is waiting patiently for my body to heal, fed me, clothed me, monitored me while I showered in case I passed out... crap, the list of things he did [is doing] for me is too long to even recall... I just know that I could not have gotten through the last few months without him. 

Then there are the folks that helped arrange food deliveries, delivered food, send cards, visited, called, sent a text... I am humbled by all of these things. 

An aunt who fought against her ingrained instincts and took care of me as best she knew how when my husband couldn't stay with me.

My mom, who took time off and flew to be with me and watched her first baby sick and vomiting and trying to recover; held her hand, rubbed her brow, made me smile and provided those moments that induced healing that only a mom who loves to mother and nurture can give.

Friends who made sure I felt loved and fed, acquaintances who sent notes and some who even made sure I was fed... they came out like a force field and I was unprepared for the support.

I did not expect any of that, support that is... from anyone outside my immediate family. 

I am not sure why. I tend to keep to myself... I have been deeply burned by some people I thought were friends, so I tend to keep to myself and not talk to many folks. So, when I got the "NEWS" I had to let go, I needed help, I need a group of people to have my back (and not throw me under a bus without a chance to tell my story) and they came out of the woodwork, and I was touched, and am still touched, humbled.. tears are in my eyes now, as I write.

Even friends who I exchanged superficial texts with stepped out and were present to me. Near strangers offering so much more than good wishes.

The world is truly a magical place filled with so much good. I can't wait until I am free to frolic (without pain) and pass on that kind of goodness... for now, I heal, and am blanketed in gratitude that I have a tribe whose large size I didn't know.

~ ~ ~

I was driving and reflecting on what good things have happened to me in my life over the years and  in a brief flash of mental inner dialog that occurs in seconds I noticed that I drove by a building that once housed a flower shop in the 80's when I was in high school and which was made famous by a stop by then president Reagan who went to buy flowers for his mother-in-law who lived up in some super fancy "estates" near my house.

I remember that visit, he was new to office and it was a stop that made the local news. The other funny thing is that night some friends and I went to visit a friend that lived in those "estates" and was a neighbor of Nancy's mom... how do I know,, because of the plethora of secret service who hung out in the neighborhood. I remember a group of us running to the car from my friends house and the agents getting a little "jumpy" - but those were different days. Now we would probably be shot, then we just got stopped on the way past and told to behave by men in dark suits that wore sunglasses at night. 

I smiled at this memory as I drove away from that building that once housed the famous flower shop; I loved high school. I had friends whose company I enjoyed. I had good times... I was a little bit of a rebel, but I had a heart of gold, and the naivete of a child.

update - the last 4 weeks have been interesting

So, what an experience these last few weeks have been.

The surgery went abut as expected.  A scratched cornea in the hospital.

The final diagnosis was the best to be expected. No chemo and no radiation.

Big blessings.

I took a nose dive after I got home... lost over ten pounds in about 24 hours.  

Family took care of me. Friends feed me. I felt/feel deeply loved. 

I have been torn down in a way that has built me back up.

I am exhausted, tired and eager to get on with life.

I even drove once!

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 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.

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.