Queen of my cancer domain

There is a certain nervousness and apprehension as I approach my oncology follow up visits. 

I know to expect the following;  a vaginal exam, a pap smear, and my scar gets a review. 

I never really thought I would ever blog about these things, but here I am talking all about my girly bits.

My oncology center has a pretty new office, it is fancy schmanzy. I was able to see their previous office space several years ago. I helped a colleague through their own diagnosis. The space has different kinds of patient rooms and this visit I got a room that I call a throne room. They have these modern chair-that-turns-in-to-an-exam-table-complete-with-stirrups-that-miraculously-appear things.

After being ushered in to the room by the nurse  I proclaimed that I was glad I got to get a throne room. I  sat down with royal aplomb, gestured grandly,  and proclaimed myself as queen of my own cancer.

This is the chair, with me in it... and yes, you can see my butt poking from behind that silly paper drape if you look hard enough:

Anyway, turns out that my abdomen is not lit up by my disco ball ovaries. 

My oncologist is incredible, there is a gentleness to him that is unseen in so many other physicians. All the Ob-gyn's I know consider him their go-to guy for their patients with oncology needs. I understand why.

When he examines me, there is a certain gentleness. A real look at his handiwork not in how they reflect on him, but on how they are for the patient. If you are open to the idea of therapeutic touch, I would say this doctor was born with it. 

So, as I lay on that table-formerly-a-chair, I asked him what he had done with my ovaries. He explained that he had tied them down to a ligament. He followed up by explaining that they are about 3 cm lower than where they used to be. he added that they should continue to function as long as they normally would. My ovaries were not left to roll around. Nor were they hung up on my ribs like a disco ball.  

I told him my story was better. He laughed and said he thought so too.

Cancer patients tend to develop a kind of crush on their oncologists. I can totally see that. It is not the kind of crush where you feel love. It is the kind that comes from feeling gratitude, It is pretty amazing.

I am still reflecting a lot on gratitude. It is hard to properly express gratitude to people  in this experience. Gratitude, it seems, is my lesson that is still being developed in this experience.

On The Facebook today, I came across an essay on suffering and gratitude. There was something intense to ponder  in the message. And the message was made moreso when the essay ended with this message:

I am grateful for your hair, the beauty of your eyes, your way with words, your heart that always is ready to give, your willingness to grow, your willingness to not know, the way you garden, naked, early in the morning, your love of family, your love of wine, your love of Scrabble, your glass-half-full ways, your love for your son, your belief in God, your belief in the power of poetry, your belief in the power of love, your Catholic ways, your love of your mother, your love of Mother Divine, your pale white skin, your lips, your smile, the way you love your friends, the way you love. (Source)

It appears that little piece was about a woman named Adele. I believe Adele is pictured at the bottom of the page in source link. That part, though, touched on some of the things that people comment about me or that I feel about me. In some divine sense, I want to believe that I was meant to see it. And to relish this sisterhood I share with this woman named Adele.

TMI

 Navigating a cancer diagnosis that has a surgical intervention is pretty complicated. In the case of breast cancer  the mastectomy or lumpectomy scar is right there for you to look at, it is hard to hide from, even in a case where the patient has opted to get reconstruction. 

Girly bits, the lower ones, cancer is a little different. 

Both breast and cervical cancer are traditionally considered women's cancer (though men can and do get breast cancer). Our breasts and vagina's are the most obvious parts of what makes us women (yes, yes, yes, aside from all that inside touchy-feely kind of stuff).

I have not had breast cancer, but I used to sit on a board for an organization that served women who had breast cancer, and as such I heard a ton of stories. Women's sexuality, for many of us, are tied up in our boobs.

Are they small. Are they big. What kind of nipples. Do they sag. Do they perk. 

People we, as women, love intimately, typically love them.

I can't imagine the mental turmoil surrounding losing your breasts.

I know too well the psychological turmoil in losing your lower girly bits.

For starters, here is a pictorial cartoon like representation that I took from the ethers about what those girly bits look like. I would have used actual body parts, but really, it can be hard to tell from something like a medical school cadaver image. 

It should not be a surprise to anyone that I owned these parts. These parts are also part of what made me a girl. Aside from boobs and all that other stuff. Gender identity... I believe that is the new buzzword.

This is me, before the surgery.

So, below is a picture of me after the surgery. I had to use some fancy apps on my phone to remove those parts which I had removed. But this is all that is left inside me. Most of my vagina. And my ovaries. Everything else was taken out. My uterus - OUT. My cervix - OUT. My Fallopian Tubes - OUT. There were some other things that got taken out too; lymph nodes, tissue... but those aren't girly bits.  Oh, and you may be wondering what is up with my ovaries. For now, since I plan on asking my oncologist about them at the next meeting, I just imagine that he blinged them up and hung them on my ribs  or something once he separated them from my uterus and Fallopian tubes. I imagine that they are dangling like a disco ball for my abdominal region (what seems to have gotten big enough to play host to an CRAZY internal organ dance party).

This is me after.

But this is my trying to make light of something that is far more serious. My scar from this surgery is on my abdomen. It has not really exemplified what exactly happened to me. 

I had all those parts removed. My vagina was shortened. 

For the past 5 months, I have been terrified to think about what my new body was like. I knew and celebrated it being cancer free, but it changed. it changed in ways that make it very obvious.  

But these are things I cannot see. And because I can't see what my new vagina was like, I had created horrible images. These were courtesy of words like scar tissue and granulation that were tossed my way in my post surgical exams. 

Those are not pretty words, images of keloid and granulation in my mind as to what my new vagina looked like. I had images of puckers tough tissue reminiscent of the ears that a bullfighter cuts from a bull.  In my head, my new vagina was hideous. I was ashamed and horrified.

So, finally, after five months. I got up the courage to take a feel and see what it was like.

It wasn't hideous to the touch, there were no areas of puckered keloid tissue with granulation that I could identify. The tissue was smooth, taut, moist. Just what it should be, though missing the nose tip of a cervix.

I cried with a sense of relief.

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.

..

A year in my life

A year ago, I had sent my son off to Europe and missed him terribly.

I think it was the Starbucks app of the week that was a picture a day app. I downloaded it, because;
1) it was free
2) I was thinking about documenting how much I missed my son

So, I took the selfie... and time flowed and I stuck to it and yesterday I got a notice that I had taken 365 photos.

One year, one insane year.

A son sent abroad at a very young age and being diagnosed with cancer. Not really sure which was hardest at the inception.

I missed my son terribly and was so happy when I reunited with him.

And hearing you have cancer sucks, sucks, sucks... and somehow it infiltrates everything.

But I missed my son and that was the hardest thing ever, and yes.. in a way, it was harder than being told one has cancer.

But the cancer things has its own craziness, craziness that makes everything outside the norm seem so much scarier.

So here is that one year of selfies, and as I sit here trying to figure out what all to tell my oncologist when I call him tomorrow, I think I look so much happier now than I did when I missed my son so much!

The fossils of dead superlatives

I am the best at beating cancer.

Though in some respects, there was not much to beat.

In the end, we caught the cancer so early it was only the size of a grain of salt.

Yes, I talked about that before.

There are many strange things that happen when that words gets tossed into your life.

Trying to make sense of it may be the hardest.

In my case, it is managing the whole thing of having CERVICAL FUCKING CANCER.

It is, after all, considered to be a sexually transmitted infection.

And then there is managing that stigma.

I am finding my path as an advocate for the HPV vaccine. And am meeting with many people about how to help spread the word about the vaccine. I will state that I would not wish what happened to me on my worst enemy, and I had it easy.

Anyway, the stigma thing.

Some people that I tried talking about this with dismissed my concerns as my being more upset about it than the situation merited. In my fragile state I listened to that too much. Several months out from hearing this.. I am calling bullshit.

As I talk more with others, it is very clear the stigma is there.

After all, it forces us to have a conversation about S-E-X.

Because, that is understood to be the main way that you get it.

At a dinner to talk about HPV recently, a dear friend revealed that she had cervical cancer. And I watched her talk about her experience, and the others at the table leap at the chance to blame it on her husband at the time, as he was older, more experienced. I was pretty horrified by this, one could tell the others at the table liked her. Most likely they did not want to have any unpleasant ideas about her and her choices in behavior. We were meeting to discuss how best to spread information about the importance of the HPV vaccination among a particular religious group. As I heard them accuse the man, the hair on my back flared a bit. I reacted this way because it was judgement...  this happened and lets blame the older ex-husband because that is easy to do (though there is no way of knowing if it was the correct thing to do).

My tendency is to assume that everyone is having sex.

What that translates into can vary;

• waiting until marriage
• waiting until in a committed relationship
• Sex on the first date
• Sex with strangers
• Sex with multiples
• and on, and on, and on...

We have chosen, as a culture, to decide that one (of these) is better than the other.

We tend to judge men and women who choose to move outside the boundaries we set. That is, those of long term, spiritually certified, monogamous, committed sexual relationships.

And while this may present a cultural ideal, it really is not the case. One just has to look at the research coming out of the Kinsey Institute to be witness to this.

It is unfortunate that the assumed cultural demographic for women with HPV and cervical cancer tends to be among what is often referred to as the loose woman. 

Working in the early 80's in some health promotion programs (breast and cervical prevention models) it was often a topic of discussion that cervical cancer was either transmitted by 
a) loose women or 
b) the husbands who had sex with loose women who would then  give this disease to their ever so chaste wives.

The truth is, is it really any of our business to worry about past choices? Past experiences?

We can all assume that the women who've had a diagnosis of cervical cancer have in fact had sex. It follows that in some way they have been exposed to the virus either through her own experiences or those of her partner.

The possibilities range from 
a) being raped (which is much more common than is reported, regardless of how you feel about it being deserved or not, and that is a whole different conversation) to 
b) choosing to have sex with a partner who is infected.

The only thing for certain is that there has to be at least a third person. This is in regards to the sex lives of a couple for HPV to happen (I don't mean a three-some per se, though that is not excluded). The couple can be gay or straight.

Divorce rates indicate we participate in a form of serial monogamy. We can follow that with the idea that people who remarry have been exposed... which helps accounts for the idea that 80% of our American populace has the HPV virus.

But there is that stigma, it hides out there as this article recounts and is poked fun at by this Onion piece.

Dear me, I seem to be ranting...

Announcing I had cervical cancer allows people to make  assumptions about my sexual behavior. These assumptions create a need in me to discuss my health and sexual history to allow people to form a correct opinion of me.

Hell, even my husband was lamenting that he hoped  that he was not the cause for my disease,

In the end, my cancer was something that my body was unable to fight and the cells decided to mutate...  in most cases, this is something that bodies able to fight on their own.

A vaccine would have helped.

Oh, and by the way the incidence of oral cancers is on the rise and in men and these are associated with HPV too... how is that for a fun conversation. Lets talk about sex baby!

~sigh~

The funny thing is that I titled this post just because I read this article and liked the phrase enough to want to use it.  I did not intend to write a diatribe about my dislike of judgey people in terms of sexual behavior, but it happened... I suppose it is something I am still processing. one does not hear the word whore cancer and move past it easily.

Anyway, I love words, I love concepts... concepts like the consensus of definition, etymology, and epistemology (to name but just a few).

I have had several friends comment on the cautiousness in which I choose my words.  However,  when I am excited  I tend to fall back on strange metaphors, similes,  and synonyms that are tied up in my multi-cultural background and present what to some as gibberish. My  friends are able to figure it out or at least pretend to. 

I do love words, I like to listen to them, make sense of them, argue and chat using them... and I was charmed by this idea that remnants of my ancestors word choices are alive and well in my current vernacular.

It was smaller than a mustard seed (or “How ya doin’?”)

“How are you doing?”

I get asked this a lot. I mean a lot more than usual, a lot, a lot. I imagine it is the result of their knowing I was diagnosed with cancer, and with a subsequent surgery.

It is an even more complex question to answer now.

The nuances of recovery from my surgery are interesting.

On one level, I am so incredibly lucky that it is a true cause of celebration. I wonder how rare it is to get a cancer when it is under 1 mm.

In one study that I read about cervical cancer, the data regarding the tumor sizes (not direct to the study, but the data was presented) said the mean size was 2cm and the median was 1.8 cm (of the tumors in the study).

I was at 0.8 MILLIMETERS

a grain of salt.

       a grain of salt, on a pinhead.

Smaller than a mustard seed.

The average size (from that one study) is like a marble, or a quarter, or a stamp.

A stamp, rather enlarged

I am so insanely lucky. However, my cells had made the crossover from being atypical to being cancer. The cells in question had moved from being In Situ to being nefarious (micro-invasive was the word) things…. So I said get it out.

It was aggressive in terms of the treatment I chose. I didn't, however, want to revisit this conversation of “You have cancer” again. At least not for this.

So, the surgery for a grain of salt included my  the removal of entire uterus, through a long abdominal incision. It included the removal of my Fallopian tubes, sixteen lymph nodes, and some tissue that surrounded my uterus.

For something the size of a grain of salt.

The surgery was traumatic. My body does not feel normal, though it feels like it should feel normal. No visible parts are missing, but there is the scar that travels along my lower abdomen.

My girly bits and stomach are numb. My scar itches. There is a heaviness where I image the lymph nodes were. Cold causes a strange ache. I get exhausted easily and try to balance everything.  There is something I will refer to as exudate. My stitches have yet to dissolve. I don’t feel good in the sense that I feel limber and mobile. My abdomen feels  tight and yet wobbly.

Source: http://en.wikipedia.org/wiki/Daniel_Johnston

Musings, womenblair, cancer, death, emotions, gentleness,grain of salt, gratitude, hysterectomy, musings, non-being, philosophy, small

This post originally appeared elsewhere.

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

For the children's sake

Today I went to a luncheon that was started by a family that lost their son/brother to the ravages of addiction.

As I listened to the mother and sisters make impassioned pleas for support, I thought about how I would feel if I lost my son... not just to addiction, but to anything. Considering that I was close enough to that when he was a new born, I felt the mothers anguish. Then as I thought about how the young man was only in his mid twenties, I wondered how that must feel if it happened now or ten years from now, or even twenty years from now... painful is what I could answer.

Following that, I began to consider what my parents must have felt when I called to give them my news.

I started to feel a little sick to my stomach. Just in anguish.

I thought about my mothers gasp when I called her, and my fathers silence when I called him.  I noticed them, but only slightly... I was so wrapped up in my own extremely feeble attempts to try and manage the news.

To call them and share the news that "I have cancer" was hard. And to now be able to put myself on their imaginary end of the phone line was pretty horrifying...

What would I do if Squink called me with such news... not a question... the mere thought brings me stomach pain, a heavy heart, my breath stuck in my throat.

Our children are not supposed to die, they are not supposed to get seriously ill, to suffer.

Life is pretty ridiculous, and I say that because in spite of everything,  it all results in death, and we humans become so attached to each other, that the death part becomes un-natural to us in a way.

And I am not trying to be-little it, I am more trying to wrap my head around it.

People we love get sick (be it cancer, addiction, heart disease, depression, leprosy...) and they die... and we have to deal with the mortality of the ones we love... and the pressure of things when it is your children who are going through the process, well it must be intense and I don't think it ever gets any easier.

When we were asked if we wanted Squink to be given last rights, that was a tough moment. We understood that he was not a healthy baby, that he could die.... THAT was intense. Schatzy and I went home and prayed, we felt helpless and when that happens you turn those feelings over, they become outside of self.

So that is all I can say, getting that kind of news must be devastating, as devastating as it is to get and be aware of the news about yourself, but somehow I just know that no matter what his age, I would take the news from him far harder than I think I might if the news were about myself... and neither would be easy.

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  

My favorite line is = POEM: wild geese

“You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body 
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things.” 
~ Mary Oliver

find the beautiful 5

I am kicking and screaming

I am angry

I lash out

I don't know where else this could be coming from

damn cancer

and so, to try to slay this angry beast, I looked round me trying to find something beautiful.

here is what I have...

there is a certain kind of light that I have only ever witnessed here in the desert

it comes at sunset, in winter

it is a light that makes our mountains purple instead of brown

that seems to bear a reflective quality like that of burnished gold.

that was the beautiful I saw today

and here is a terrible picture of it...

“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.”   

~ Rabindranath Tagore

Remission

At my last appointment my doctor used this word.

It should be a joyous word, shouldn't it.

Not a question.

It was a blow to hear it.

As I told a friend, I had somehow thought I was exempt from THAT status.  So, when he dictated his notes and used the term to describe me, I was totally taken aback.

It's really hard to navigate this disease, especially when there is no chemo, no radiation. It's like a free pass.

If I were sick from those, I think people would be much nicer about my mental state...

But I LOOK FINE…

So, I must FEEL FINE…

But feeling fine is a lot of work. More work than it's ever been before.

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. 

Gentleness

I feel a little better today. I still am working hard in my brain as to what to do about everything in my post yesterday. I am sure it will come to me.

One of the images I use when I want to feel better is one from my life back in Ecuador.

Specifically, being on our ranch and sitting on the grass higher up on the mountain.

This is the mountain our ranch was on:

Pasochoa

I have no idea where our ranch was in relation to that picture, but I have many good memories there.

The one that I am calling to mind is about sitting on the soft mossy grass, just above the tree line. There is a grass there that is soft like moss, but is a very small almost light green ground cover. It has these tiny pink berries, berries so small you can't even see them unless you are looking closely. I can feel the high Andean wind burning my cheeks a bright red. I feel like I can hear the sound of God in that rush of wind blowing past my ears. I weave my finger in to the soft plants, smelling the earth. Listening to my horse hobbled nearby, and the chit-chat of my family enjoying a picnic. I feel connected to the earth, an extension of her, like a small dendrite-like messenger. I feel my hair blow across my face and whip around wildly in the wind. I pick the tiny pink berries and put them in my other hand, which is cupped in my lap... filling my cupped palm slowly with these little light pink jewels. Fairy food, I am certain it is fairy food. I put them in my mouth, one by one. tasting their faintly sweet juice. I watch our cattle off in the distance, grazing.

There is something about that moment that is so gentle, so peaceful, that it can still evoke a certain calm when I am weathering a storm.

"Sorry about your whore cancer, lady"

I am getting  fighting  AT  (ok, ok) resisting giving in to the angry stage.

I think.

I keep get the strangest urge to throw bottles at walls, so I can watch and hear them break.

I get why this happened to me. I just don't like that it happened (is happening) and I don't like the stigma.

So, The Onion, known for its tongue in cheek humorous articles, published this article.

Considering that current experts estimate that 70% of Americans have been infected with HPV, it is pretty spot on and does it pretty well.

I actually thought it was clever, but the problem was that I happened to see the link on The Facebook (here).  And the first comment I saw, was the one I used as the title of this post.

That is the thing, there is that stigma. Hell, I have family members that I could see using the same or similar terminology. And it is so "unspoken" among most people.

And it hit a raw nerve. Because this is something women have the consequences to, not men. So women get called all sorts of horrid things.

Here is the thing. I don't think I am a whore. Never was.

But I feel like I am being called that. And it is pretty prevalent, the stigma about women who get it. There is just so much about this I want to scream at.

I mean having your life attached to the word cancer is bad enough, but cervical cancer?!?!?! "That slut cancer".

Consequences, I suppose. I try to make it less hurtful... but I can't seem to right now. I was never a slut.

I get angry. I get really pretty fucking angry. And it ebbs and flows and I try to keep it at bay because I don't want it to consume me. And I don't know what to do about it.