Category Archives: Mom

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

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Day 1 – 40DOW – viewpoints on vaccines

This morning was a struggle. 

I am trying my damnedest to get this to happen:

If you can RSVP for a Phoenix event click here.


I struggle because I want it to be successful 

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

I struggle with that.

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


Bleeding.


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

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

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

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

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

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

She has seen my girly bits too.

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

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

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

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


The biopsy was really painful, it still hurts as I type this some 12 hours later.
I still have so much to be grateful for, But it is kind of nerve wracking to be in my position, again… you know, waiting for results. Not the most fun place to be.
Anyway, after my ridiculously painful “procedure” I yelled out “fuck, that hurts” and immediately apologized and lay on the exam table, in tears, for a while. The nurse practitioner who took the biopsy was so very kind and seemed very distressed by my reaction.
I was pretty shocked by it too. It was, however, really painful. I have had biopsies of my girly bits before, without any numbing agent, and it was nothing like this.
At one point, during the second “grab” for tissue I screamed out “oh fuck that hurts”, and then immediately apologized. I am generally not one to curse much… I was embarrassed.
I lay on that exam table, tears streaming down my face, trying to get back to a normal breathing, staring at the bright light above me wishing there was something like a rainbow pooping unicorn to look at…
The nurse practitioner held my hand, asked me how I was feeling, helped me get some of my ibuprofen and drink it down. She seemed very concerned. All very kind considering that she had just learned she would be speaking at the HPV movie thing and that I was involved.
After my breathing got back to normal and the tears stopped falling down my face, she told me to lay there as long as I needed. She, and the other NP with her, quietly left the room. I lay on that exam table, and the tears came back.
It was a pity party I suppose. I lay there crying and trying to remember to be thankful that this was an experience in which I had had tremendous luck. No chemo. No radiation. a tumor the size of a grain of salt.
I lay there looking at the light above me. Trying to make it something more than just a light, making a distraction from the pain in my internal surgical site and the pain in my heart.
My heart did hurt, I had a vaccine preventable disease.
Let me say that again, I was diagnosed with a vaccine preventable disease.
One that would have prevented everything, a sub-total hysterectomy, worry, agony… and today’s darn biopsy.
It is a vaccine preventable disease.
Granted, I was born before this miracle vaccine was developed. But it is a vaccine preventable disease.
And as I ran through a list of people I do not particularly care for, not one of them and not one of their children were eligible for my wanting them to suffer what I had suffered through, I AM suffering through.
Vaccinate your children. In some cases yourself. Your boys. Your girls. This alternative is not fun. not fun at all. The HPV vaccine is good for kids aged 9 to adults aged 26.
It is a vaccine preventable disease.

..

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 

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

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

Day 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.

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.

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.