Tag Archives: cancer

Challenges – 44/365

My biggest challenge it pretty hard to explain, but let me try.

at its root and if I had to define it in one sentence it would be;

My biggest challenge is managing my feelings about my cancer diagnosis.

I have tried to break it down in my head.

Cancer, still has the vestiges of being a forbidden disease, the one people don’t talk about… so frightening so heinous that when one died from it the mattress was tossed. While we all don’t go to the extremes, I still see it whispered, I find that people do not like to talk about it openly, but prefer hushed gossipy whispers.

When you add to that what kind of cancer it is, you get a certain other subtext going on.  I know from my work in breast cancer that there are issues about the physical and female aspects that are altered through the process. Many of the women I talked to would try to explain the altered self perception after a mastectomy.

Since I can only talk about, with any real authority,  my cancer… I can tell you that for cervical cancer being loudly proclaimed a sexually transmitted disease it hangs there, in the ethers after people hear about it.  They look at me, silent.

Now, that may be a by product of the whole “hush, shhhhh… it is cancer” thing. It gets more specific though.

I still so vividly recall sitting at dinner with a friends and some friends of one of that friend to talk about how improve the dialog about HPV vaccination among the local LDS community. My friend mentioned that she was a survivor, but that her husband was older when they married. The other around the table cooed and talked about how it couldn’t be her fault because after all, her husband was older and as such must have been “experienced”. While that may certainly be true, I know my friends sexual history and that was a super weak thing to let happen, because she had been sexually active for at least 5 years prior to her marriage. I was so upset by that that I said, well I am a survivor too, but my husband is younger. No one could look me in the face. One of the people was a mormon physician and I sure hope to her God that she was embarrassed. That was a stupid reaction for a physician to make, especially one who understands disease.

I think that was the worst part of my experience.

The weirder parts are reading tabloid news about which rock star has throat cancer and while knowing that they smoked and it was surely a contributor that my guess is that they have a cancer related to the same virus from their own forays in to oral sex.  But, their publicist imagines that it is easier to blame it on the cigarettes.

No one knows my sexual history, and it is really none of anyone’s business but my own.

That stigma is so awful and I am at a loss of how to dispel it without making my personal sexual story part of the narrative.

The scenarios in which one could get a cancer causing HPV infection are not as lewd as most people want to assume, but some of them are.

I was asked to consider being a speaker at a relay for life event by a friend. I told her that I would be happy to, but that I didn’t have a sexy cancer.  Sexy cancers being the kind one can say “it’s rare” or “it’s miraculous how it was detected”… you get my drift. I think she realized how controversial STI cancers are.

STI, can we come up with a better name?

Will you take the better name challenge and suggest something? Or refuse to fall into a gossipy mode when thinking about this kind of thing?

Come on, I dare ya!

Making me mad 6/365

Today I am supposed to write about what is making me mad.

I used to love this magazine, the back page folding exercise was a favorite right next to Spy Vs Spy. 

Aside from nostalgia about the magazine, nothing much comes to mind. I am sure i get mad, but it is those fleeting surges that are really rather insignificant; like yesterday when I was standing at the top step of my porch when my mini great dane decides to jump on me and I almost fell back – but that isn’t anger it is really fear.

I drove to work this morning thinking about this… “what do I get mad about”.

  • One that has been pointed out to me is that I do not like being teased, especially if there can be any inference about my being stupid.
  • I hate people who make fun of others. I try really hard not to do this myself, not always successfully.

Other things upset me, but they do not quite make me mad.

 

 

(from here)

My favorite accessory 5/365

 

My favorite accessory is probably my extra earring. A small gold hoop on my left ear.

I have talked about it a few times before…. like here, here,  and here.

It seems so strange to talk about this earring on a day (day after, actually) that someone famous died.   And normally I think I would have let the fact that David Bowie died just slide past with a certain wistfulness. But not now.

The news says he died of cancer, that horrible fucking beast of a disease. He had been fighting it for 18 months.  Which fits the same schedule of my own “fight” with this beast.  18 months ago I cut a vacation short because my doctor called with the pathology reports. I don’t know what kind of cancer he had, but that is probably irrelevant. Cancer sucks, it just fucking sucks.  So here I sit, mired with some sense of something that is indescribable – a dash of survivors guilt, gratitude, thankfulness, sorrow – it is a crazy mix. It has its own sound track, his songs that seemed to play at those strange little milestones in one’s life,

One of the more interesting things to come across my social media feeds is a David Bowie reading list. A list of 100 books that he allegedly found to have some influence or importance. I have read 27 from that list, all of those would be on my list of 100 . Some I have no interest in reading, but in careful consideration I think it is more about the cultural milieu in which we found ourselves and I have my equivalence.

It’s a god-awful small affair
To the girl with the mousy hair
But her mummy is yelling “No”
And her daddy has told her to go
But her friend is nowhere to be seen
Now she walks
through her sunken dream
To the seat with the clearest view
And she’s hooked to the silver screen
But the film is a saddening bore
For she’s lived it
ten times or more
She could spit in the eyes of fools
As they ask her to focus on

It’s a god-awful small affair
To the girl with the mousy hair
But her mummy is yelling “No”
And her daddy has told her to go
But her friend is nowhere to be seen
Now she walks
through her sunken dream
To the seat with the clearest view
And she’s hooked to the silver screen
But the film is a saddening bore
For she’s lived it
ten times or more
She could spit in the eyes of fools
As they ask her to focus on

~ David Bowie – Life on Mars?

(from here)

whose boat is on the running stream…

“What should I possibly have to tell you, oh venerable one? Perhaps that you’re searching far too much? That in all that searching, you don’t find the time for finding?”
~ Hermann Hesse, Siddhartha

ecbracletred22-020

We are cleaning house to host Christmas. And as is often the case on such endeavors (at least in my life) things have been found that elicit powerful and profound reactions.

I was tidying up our mantle and found a stone jar with a fossil lid. Curious, and willing to delay the tidying up to explore, I opened it up only to discover something I probably needed to find.

It was a 5 foot long string of red beads.

as i pulled the strand out, I thought back on when I must have bought it. 17 years ago, when I was in Quito and roaming one of the many folks selling things in the parks.  I remember picking this one out because it had two “gold” beads in it.  I twisted the string of beads onto my wrist, feeling a simple pleasure as I felt them wrap around.

It is a simple standard of beauty that has carried with me. Many of the indigenous women, of varying tribes, in Ecuador wear them. It is said to ward of evil and to protect the wearer. One will see these wrapped in various widths and on various ages of the women in Ecuador. Red bracelets are actually something pretty widespread and come in a variety of materials.  It is a familiar one to me, and I have worn it on my wrists for these past few days, a certain level of comfort in seeing its length wrapped around my wrist. I touch them, roll them against my skin, admiring the variety of sizes the beads come in.

Last night, I was in the bath tub and wondered if the string would suffer from getting wet. I rolled and untangled my bracelet and gently laid it out to dry.  This morning I picked it up and twisted it back on my wrist.  There was such a comfort in that ritual. I wondered how many other women had gone about starting their day by twisting these beads around their wrist, in a mix of superstition, habit, and because of the gentleness of it.

 

red beads
This is my red bead bracelet.

“For such is the way of it: to find and lose, as it seems to those whose boat is on the running stream.”
~ J.R.R. Tolkien, The Fellowship of the Ring

And my doctor says I’ll be alright… But I’m feelin blue

I love me some Tom Waits

 

 

I had what was my one year follow-up appointment today… even though it is one year plus 47 days from the day I had my surgery.

I do love my oncologist. My oncologist told me about grants they have written to the CDC . Exciting stuff!

Then he looked at me and said he had something he thought I would appreciate and that he would come back and show me what it was, after my exam.

My doctor returns with a frame, inside of which is a pathology report from 1960. It sounds extremely modern, excellent description of the sample but what was the most fabulous part was that it was signed by Dr. Georgios Nikolaou Papanikolaou. The father of modern cytopathology and responsible for the test that saved my life.

Thank you, Dr Papanikolaou

If it quacks like a duck… it must be stunned

Today, during what was originally supposed to be a quick glance through my Facebook feed I read the words “IN WOMEN WITH PERSISTENT CERVICAL CANCER”.

It was in all caps too. PERSISTENT CERVICAL CANCER.

fuck

the urge to cry from worry

fuck

I stared at my screen thinking; Is this a thing? Can women get cervical cancer… on repeat…

My joints started to ache, my skin flushed with needle pricks, my face got hot, I held my breath.

Is this really a thing?

How did I miss this… I mean, I am a medical school dropout for chrissake… one who has worked or volunteered in breast and cervical cancer issues for most of her adult life…

In my head, in that stunned moment after reading that, I had the idea that some women just kept getting cervical cancer… like one gets a cold… they are both viruses, after all.

So, I (somewhat reluctantly, yet with incredible haste) went to my very trusted medical internet sites to see if there was such a thing (complete with a search for an applicable ICD9 code) as Persistent Cervical Cancer.

OK.

deep breath

the urge to cry from relief

Turns out, it is another way of saying metastatic cervical cancer, and just as I had thought before I had read that post cervical cancer recurrence rates (really, it is 5 year survivor rates) are linked to stage of initial diagnosis.

fuck

I wonder if my conversation with a person (a woman who had also had a cancer diagnosis, though of a different variety) just minutes before seeing this, where we talked about how certain things just tend to have an initial thought that you have a recurrence, played into how I reacted (what a sentence this is?!).

Your tooth hurts  – it has spread.

You get a bruise – it has spread.

You have an ache – it is a tumor.

but… maybe not.

The brutal art of being… is shockingly gentle

​Word of advice; do not, for the love of well made chicken soup and all other things holy, ever ever ever  Google the words and look at the images for “The brutal art of being”.

“There is brutality and there is honesty. There is no such thing as brutal honesty.”
~ Robert Anthony.

That said, living is brutal. It is hard on our bodies, what with that getting old crap… then there are certain aspects of how we treat one another. Why the fuck are we so stupidly cruel to each other?

 

There is another part of me that kind of finds this sentiment above a bit ridiculous. I mean, we are animals after all, it’s not like opposable thumbs and the ability to breast feed instantly granted us some sort of “nice card”.  As a matter of fuck   fact, I learned at an early age that life had this brutal part to it. Between friends with bodyguards, sleeping in the same room as my brother so one of us would have the chance to scream for help in case we were kidnapped, watching my dad routinely killing bulls through his grand love-affair with bullfighting… this were in my face demonstrations that life could have a nasty bitter after-taste. It is super interesting to note that the same place that gave me all this… hmmm….. brutality, if you will…. also gave me magic.  Beautiful, glorious magic.

 

I, at this very moment, am wondering if I lost the ability to see this magic? A temporary (I would hope) blindness? Or maybe I am seeing another side to the magic, and I need to learn to recognize it. Perhaps it left when my faith in the divine disappeared in a puff of smoke? When I used to feel this kind of angst (for the lack of a better work and to a much lesser degree) I used to think it was a part of my search for grace.  Maybe it is an extension of searching for grace? A more fevered search.

When I left my life behind and moved to Ecuador to attend medical school, one of the more incredible things that happened was that a boy followed me there. I had no idea that he loved me, but he did. My Ecua-mami (my mother figure in Ecuador) and I talked about how this made me feel… I was nervous and apprehensive, I had never even considered even an attraction to him, yet here I was planning a vacation with him. We talked about assumptions and implications. She told me that I would make my own decisions, but that life would, in a way, make them for me.  That is exactly what happened.

I never was able to love him the way I think he wanted me to. I learned recently, that he just earned a significant year chip in the Bill and Bob club.  This dramatically coincides with when he realized I was not going to spend the rest of my life with him. While I can’t confirm that his experience with me served as some catalyst, my gut tells me it plays into that. Life is brutal. I took so much for granted with him, though not in a shameful way. I still think about that experience traveling around Ecuador with him with a certain fondness. It was, however, rather brutal… thankfully it was imbued with a certain magic that the landscape provided and in some ways became one of those significant romantic moment of ones in my life.

So, fondness… there is a gentle art to fondness. I used to be a master of it… it being genuine fondness. Maybe this is where I should explore next. That area is a place in my experience, my life, where some hard truths about self are to be acknowledged (like the story of the boy above, for example). The nice thing is that fondness is gentle, and even the hardest of these truths are tempered with a certain gentleness.

sitting present in the darkness

This past year and some has been a weird process. I have been angrier than I have ever been before. I have been meaner than I was ever before. I have been sadder and more confused. Those are only part of the whole experience…

I have also been lifted higher, I have had moments of intensity that I cannot compare to any prior experience, I have been deeply humbled by people who I never thought cared…

It was super intense…  It is intense.

I am in one of those places today, high off of my birthday (yesterday) greetings, feeling peaceful and loved… in a place where the dark tinge hasn’t invaded my space. I am reflective, and trying to pull myself together in this moment.

Navigating these crazy mix of emotions has been exhausting.  I am sure it has also been exhausting for those who are close to me and can see how much they torment me.

I would see a therapist, but geez.. the one time I tried it took a really bizarre accident to find the most perfect psychiatrist for me to talk to, and any after just were a joke in comparison.  I know this is temporary, and I don’t want to put myself on a course of medication (though I recognize its value,  and think they should be used… it is not for me… not at this time).  My previous experience with fighting off things like this was similar in that it came after a serious illness. What I learned then, that I believe applies now, is that I need to live this craziness and work through it and I am using the strategies I learned then to help, and they are.  The one caveat this time is that I, at a time, was rather dependent on others to take care of my basic needs… and most really let me down.  I think it is that as I prepared myself for surgery, I let go… I promised myself that I would let others take care of me. So I did, and frankly, I still ended up having to take care of myself. Please know that I am talking basic needs, like food… some of the people taking care of me couldn’t even do that to help. So, I suppose I am mad at them, and definitely mad at myself.  I was trained from an early age to take care of things, now this does not mean I keep a clean house, far from that… but I am the type that will carry all the groceries, even if I am shopping with others, mainly because they walk away from the car and leave them all there for someone else and I am like “hell if I am walking up and down my porch stairs more than once, I am taking all these fuckers (bags of groceries) in right now”.  Fuck, am I stubborn or what?

Anyway, lots of thinking about all this crap and how to get myself back in to a happy place is going on. I try not to let it get me down, but it is really in my face at times. I amble through my daily life, trying to make sense of it all, trying to make sense of a world that has changed for me. Repeating tiny mantras about how “lucky I am”, or how “this world has so much wonderful for me” flutter through my head as my body tries to grasp them and hold them close to my heart. I was a much happier person 18 months ago, when I embarked on this path, and I have learned that grief, this kind of grief (the one for loss of self, rather than loss of others) is pretty fucking intense. I have changed, I cuss more… a lot more. I didn’t use to, I saved them for occasions that seemed to benefit from a well placed expletive.

There is so much complexity to this. It involves being disappointed by members of my own family and in tun trying to figure out if I had unrealistic expectations for them… because if I didn’t have the unrealistic expectations, and they really did disappoint me, that kind of makes me kind of stupid.  So, there have been a lot of questions I have been asking myself, and I am not the type that is afraid of hard questions… so that has been easy. Learning how human I am has been a mix of easy and hard. Working through stupid things people thoughtlessly said to me and which, for some stupid reason, are ringing bells and demanding my attention has been strange. There is this strange mix of braggadocio and humility in my self reflections that is a little tough to manage.  I think though, that I am starting to tell myself that I like myself again, and that is a good thing.

This shit is supposed to make me happy… follow up from yesterday

So, almost immediately (lets call it a Latin American immediately, it was probably 25 minutes 8 hours) after I posted my little ditty yesterday, I came across this: 21 Simple “Non-Spiritual” Things that make for Daily Happiness.

This came up in an image search using the words “making me happy” seemed an apt descriptor. Cat!

So the first thing you see is a happy young Paul Newman. Which is fine, but for me it was really about his nipples.

Have I written about the weird fascination I have developed about men’s nipples since I had the cancer cut out of me? No? Maybe? I dunno, but it is this bizarre thing that I noticed shortly after coming home from the hospital and watching Netflix… It is one of those feelings like one might get when they become fascinated by a car accident, rubbernecking their way past it all attention focused on the crash and not on the road in front of them.

So, my first thought was Nipples are a “non-spiritual” thing that makes for daily happiness? I don’t think so?

But I read on, and decided I had to try it out and here are my observations:

1. Touch water. Which feel good type thinks telling a fire sign that they should play with water to feel better is obviously a narrow minded water sign… I played with fire, sat with the family in front of it while drinking warm turmeric hot chocolate.

2. Sweat once a day. I did, enjoyed it too! 😉

3. Eat real food. I ate a small piece of my fudge pecan pie, because it is that good.

4. Support, subscribe, read a good magazine (print or online) that’s better than you are—with a hot drink of coffee or tea and a little sunshine and quiet.  I don’t believe that anything is better than anything else, it is not even a matter of degrees – shit just is so this one pissed me off because who or what the fuck is better than I am and to its contrary, what the fuck am I better than?  So, in lieu of this better than shite, I picked up a favorite book.

 5. Keep our clothes off the floor.  PASS
6. Community.  OK, so some of my friends (many who took care of me while I recovered) and I adopted a single mom with stage 3 breast cancer this Christmas… knowing how fucktastic cancer makes the holidays I do feel good about this one! Most of us went shopping together the other day and it was all kinds of awesome!
7. Don’t be afraid to be a fool.  I am not really afraid to go here, I do it often… BUT, and it happens to be a big huge BUT… I have to do it, if someone else does this to me, I crumple like a dead witch that had water poured over her! Working on letting others tease me with cruelty.

8. Work in an office, or live with, a dog. I have “Flash aaaahhhh ahhh Savior of the Universe Gordon Boba Fett [redacted last name to protect the unborn].

9. Breathe in and out, slowly, once a day. Thankfully, I have to do this or I can’t get out of bed.

10. Never eat while standing up, or driving. I rarely eat in these situations, though I might want to consider no longer eating at my desk because that is how I consume massive  jars of peanut butter.

11. Never cell phone while talking, or walking. I hate it when people do this to me, seems only fair.

12. Hike. I walk, on occasion.

13. Stop obsessing about one’s own happiness. I don’t think I obsess about this, though it would be nice to feel less of the angry ennui.

14. Put on a favorite song and sing it out, like we mean it. Yes, during most commutes home.

15. Pick up trash in the street. I try to do this every day, try – don’t always – but never saw this as a way to feel less grumpy.

16. Watch a movie and eat a little too much ice cream/pop corn/vegan ice cream/edamame/nuts. With peanut butter!

17. Put a few photos of loved ones around. I do this, in many ways.

18. Be honest. an important value I hold dear.

19. Sleep more. My fit bit helps me keep tabs on this. Interestingly enough I find that on the night I have time to drink turmeric milk (with or without hot chocolate) I tend to sleep really well.

20. Write. this. here. meh.

21. Meditate. Ever since I became inspired to teach my son to meditate I have had to do this every night. He loves it, we usually play some you-tube videos for this, but I stay with him for a bit and play along.

 

And… just because I love to self torture, here are my reflections on how I tried to fight being grumpy the “elephant journal way” with the suggestions not listed above (regurgitate much elephant journal?):

4. Friends – phew, this is hard – I have two days worth of texts from friends that I have to reply to because they want to do something for my birthday.

5. Sunshine. Arizona.

7. Flirt – I work in a school who would be my main contacts, that is just creepy.

8. Dress well. I have played dress up all week. It helps.

11. Relax. Give in. Hardest. Thing. Ever.

Shit I obsess about when I am not drinking… (day 3)

which is ironic because I only drink as an after thought…  as in “oh yeah, we have that bottle of red wine   scotch   rum  hard cider   beer   red wine  that we should open”.

I like drinking but it is not something I think about or have to do… in all honesty, some friends think I am a borderline teetotaler, ready to take a hatchet to en evil barrel of alcohol. It is a nice after thought, and can be awesome when used and abused in certain circumstances.

The medical school drop-out in me tends to get all worked up about talking about alcohol because we were taught to double what most people tell us they drink… alcohol and sex are two things most folks are willing to lie to their physicians about.

Which brings me to the think I have been thinking about…

I mentioned in my last post that I went to see a dermatologist because… “hey, skin cancer is another form of cancer and I have proven excellent at making that nasty beast grow, so get checked girlfriend, you live in Arizona”.

Which was good, because at the end of my appointment my deliciously “young American of Brazilian ancestry but in love with Medellin, Colombia” doctor grabbed my shoulders, looked me straight in the eyes and said “Your skin looks fine to me. Nothing suspicious. See you in a year, unless something changes”.

Phew, right?

So, as he held my gaze to tell me the fabulous news that my body had managed to not get “the cancer” again… I noticed something.

He had a bruise under his left eye… like right under his eye. My hot young doctor had a freakin’ black eye!!!! it was a beautiful yellow bruise with a slight magenta center, like an under eye sunset. The colors were rather beautiful!

like this, only a bruise, not make up, and with man eyes.

And I think I must have tilted my head when I noticed it, which I think he must have noticed because I am pretty sure he smiled at me in that “lets keep that between us” kind of way that only hot Latin men are wont to do!

So, since that moment I have been thinking about it, and considering the plethora of things that may have caused it…

Can I tell you how magical that has been? I can try, but I don’t think I can…

It has been so wonderful to think that he got into a tele-novela style fight over a girl while dancing away wearing too tight shirt and pants while in a trendy dance club, or that he opened a bottle of wine incorrectly as he was trying to pour his beloved a glass of wine, or he had a momentary lapse of muscular coordination while trying to cook a date some dinner and opened the cupboard into his eye due to his nervousness…  really, the stories in my head have kind of been endless.

So the magic?

Not once has the dark tinge invaded my space today!