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.
the urge to cry from worry
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.
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.
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?!).
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.
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.
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.
Sometimes it helps to list shiny, happy things out especially when I am feeling dark and curmudgeonly…. as a clue as to how dark and curmudgeonly I am feeling I am fighting the instinct to start out this paragraph with “Some people have told me that this is a stupid thing to do but sometimes it helps…”
It seems like I am one angry mother fucker as of late. Just ask my mother, she would agree.
1. My son, when I feel all dark and evil inside, I look at my son in the eyes and there is so much goodness in there that he saves me from myself (at least in terms of letting the dark win), I also feel really guilty that I do this, seems like a lot of pressure to put on him though he has no idea what goes on inside my head, So, my son, he makes me happy.
2. Giving – giving of my time mostly, since I don’t have a lot of money. My husband hates this part of me, told me the other night “I wish I were a charity so you would be with me”
OMG – I am two in and already they are deeply tempered with crotchety…. how do I fix this?
3. The color orange. It makes me happy. This is in spite of the fact that I was told by an “wu-wu” artist that orange is the low color on the totem pole and that only real cool people love purple – what a douche! I still love the color orange, purple reminds me of mean old ladies that hit you with their umbrellas.
4. Stupid games on my phone; Yahtzee anyone? How about Draw Free (I play this with my son, which is actually awesome), Cascade, Smurfs 2, Criminal Case, Words Streak, Words with Friends, or Trivia Crack. It is treasured mindlessness.
5. My Fitbit – love it for its reminders of how crappy I sleep when I am in a uptown funk!
6. Meat. I love meat. It is something dead.
7. Boots, I love boots. It is cold out now, they help keep my feet warm.
8. Friends, they always manage to come out when I need them most. I can’t imagine that I am an easy friend to have.
9. Coffee. I have brought myself to the point where I only take one cup a day, and I take it with cream only. But it is a glorious 12 minutes of so of my every morning!
10. My husband. Paragon of patience with me. He reminds me to be happy, even when he is his grumpiest self!
I woke up this morning in a jolly mood, probably because I was able to get relatively uninterrupted sleep for over 7 hours… considering I was averaging 4 – 5 hours, it was a vast improvement.
I lingered round them, under that benign sky: watched the moths fluttering among the heath and harebells, listened to the soft wind breathing through the grass, and wondered how any one could ever imagine unquiet slumbers for the sleepers in that quiet earth.
~Emily Bronte in Wuthering Heights
When I woke up, I listened to the silence in the still dark house, then took inventory of my body… which is a silly way of saying I paid attention to all my parts to take a chance to notice anything… usually it is the things like “headache”, “sore feet”, “happy heart”… Today it was just jolly, not from or at a certain spot, but just jolly.
I love silence, I love it very much. When I can be in silence with people is when I know we are good friends. Now, it isn’t that I demand we not speak, but when those moments that are silent, which can be as awkward as they can be beautiful… those moments are like a big reveal.
I love having a house full of people and waking up that next morning and taking my moment of silence, and being able to hear the love from the previous day still resonating off my walls. I love those moments.
As I sit here writing about it, I realize that somehow I have forgotten this habit of mine this past year. How wonderful that it has returned.
A quiet moment
Let’s all sit, silently, and feel the magic in the room, the possibility of connection and the optimism we gain when we know we are in it together.
Another day without the dark tinge… sometimes, I imagine that the tinge looks like the gravelings in Dead like Me.
I have always loved this song, it is allegedly a happy accident of a song that was written during a good time in Bowie’s life. It has always been so sober a song for me.
This year, as I reflect on how time has changed me… I am ever so much more aware that I can’t do anything about time… other than perhaps to prepare for it.
This came to me as I sat in my dermatologists office today getting screened for skin cancer. I have never been checked out, and have a history of sunburns so bad that I went into shock.
I am currently running this weird mind game where I vacillate between knowing that my post cancer survival rate is beyond awesome, but it is also no guarantee. There is some country music star that had recurrence, her cervical cancer had spread to her colon and she decided to terminate treatment and go home to live out the rest of her life. So I see this news and i get that feeling of dread all over my body, like something awful has happened… and I feel a little nauseous, and teary. My illogical brain has taken over.
This was something I have observed in others who have gotten the cancer diagnosis, this paralyzing fear of recurrence. In my case it is so ridiculous, my cancer was found so early that my “5 year survival rate” is the same as someone who has not had cancer… But “The Cancer” it changed me, and I can’t do anything about it really. Sure I can choose how to manifest it all but the fact is that there is a change that would not otherwise be there. I don’t think I can come out of this transformed into a new magnificent Blair, where some form of transcendence has occurred and I am a “child of god”, this has a dark tinge to it that I don’t yet understand. As I weave my way around this new dark tinge, taking it all in, I have to consider how much I will let it own me. Own me it does, this dark tinge. I saw this only because this dark tinge wound its way around me and changed me. I am still trying to figure it out, but I am better at being immune to crazy and even more so about knowing what I am going through.
These children that you spit on as they try to change their worlds, are immune to your consultations, they’re quite aware of what they’re going through.
The world is a shockingly cruel place. I grew up with that, a poverty among a large part of the population that seems to permeate the walls, a father that, along with his friends ritually and habitually killed bulls, earthquakes, mudslides, riots, threats of kidnapping… to name just a few.
The crazy thing was that in spite of all this harsh brutal reality there was an ability to see the world for a magical place. It is that kind of place that inspired writers and artists like Gabriel Garcia Marquez and Frida Kahlo,
So, I am not sure where I lost the internalized potion of this influence. But, lost it I did.
I found it again, in a simple post that talked about the importance of grieving.
Grieving is not pretty, it can be dark and stormy, a swirling mass of emotions. It is, however, a part of “the process”.
So when considered in that light, grief can become glorious… except that glorious is too strong a word.
Grief however, was the thing that was hard coming to recently. It became lost in platitudes like “you are so lucky”, “you will come through this a better person”, and “life is tough, get a grip”.
Grief is a very natural by-product of life. Hold it closely, don’t fight it. Don’t ignore it.
Grief is like a moving river, so that’s what I mean by it’s always changing. It’s a strange thing to say because I’m at heart an optimistic person, but I would say in some ways it just gets worse.
This is an open letter to Tim Lawrence from The Adversity Within. I actually did send this to him via email. I put some things in that email that I felt worthy of sharing here as well.
Thank you for your posts. They gave me permission to grieve. I find that almost funny to write to you… I don’t consider myself someone who would be adverse to allowing grief to flow as it needs, but that is exactly where I found myself. This was not my first bout with a trauma that induced grief. It was the first one that left me confused and scared and that I stopped grieving in. I read your last post “Everything Doesn’t Happen For a Reason”, shared through social media. It prompted some interesting discussion about what it meant for us to have people there “for” us or “with” us. It was semantic nitpicking, but it was interesting. The article, that conversation, and the perusal of other things you have written caused me to realize that somewhere along my recovery, in my case from a cancer diagnosis and treatment plan, I had stopped grieving… and what was so beautiful was that I now had permission to return to it with as much grace as I needed. That moment of realization, was really powerful.
I am a believer that gratitude should be honestly and freely given, so I give you thanks for your part in returning me back to myself (in a metaphorical sense, of course). I know I was me this whole time, but I felt more like the me I like when I stopped being so stubborn about grief.
The weight that was lifted upon the realization that this is what had happened to me; that I had stopped my grieving process right smack at the start was startling, tear invoking, and almost as traumatic as the state of stanched grief I had been experiencing. The caveat between them being that once grief was allowed back in, the feelings ebbed and flowed when grief was allowed versus rigid discomfort from when I was in the constant state of disavowal.
I have a tendency to manage grief with occasional bouts of extending gratitude (which is, ironically, what I was doing when I believe I stopped my grieving process). I am not sure what happened this time, it felt different. I am not sure where it came from; this idea that I had to own feigned stoicism… perhaps from the idea that while I had it bad, it was not as bad as others. Perhaps from listening too closely to family and friends as they repeatedly told me “you are so lucky”. I don’t know, really where this craziness started… but I can smile about it now, I can know that I am still grieving, though more purposefully now.
I was thunderstruck… it hit me hard and in the gut.
So, I think my hang up on being told “life is tough, get a grip” was that I interpreted it to mean that I had no right to grieve.
Now, I have no idea if that was the intent of what my mother told me, but it most certainly came across to me that way.
And created and angst that permeated everything… I still have a hard time wanting to trust her or my aunt with anything related to how I am feeling and how I am doing. I suppose, since they are family, that I need to get past that, but like all matters it will take time.
However, being told it was OK to grieve began that catharsis my body was looking for. I am reminded about how I felt when, after a year of trying to figure out what was wrong with me while I was in college, a weird circumstance led my physician and I to a diagnosis. That relief, that it was Valley Fever, was intense. A huge high, one that allowed my doctor and I to make better decisions about my health care. This included my attending a mindfulness based stress reduction class. That class was a game changer for me, and I have never regretted taking it.
So, now that I was armed with permission to grieve, I did and I am and I feel ok about where I am and where I am going.
I have chosen to continue advocating for cervical cancer and the HPV vaccine. That there is something that can help prevent this from showing up in young women (and young men, in terms of other HPV related cancers) is something worth being willing to talk about.
Last night I was able to attend a local chapter of Dining for Women and was asked to speak about Cervical cancer, HPV, and the Amazon basin. This is the program that DFW is supporting this month; DB Peru. The organization did their work in researching it, I loved everything about it and what it wanted to do.
I had such a great time talking with these women. I was invited by a friend of mine through the Junior League of Phoenix. This group had been meeting for nine years, and I could see why – they were funny, a bit irreverent, celebratory… they had everything that makes something work as done by women.
I wonder if I should work on getting a chapter started? Any takers?