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About blairnecessities

Living, so the dead don't have to.

the soft song of the white beauty

Searching for the sacred in the midst of my second cancer diagnosis

“The sound we hear when it snows is the soft song of the white beauty!”
~ Mehmet Murat ildan

My mother, I think, realized that I was falling into a kind of despair. I professed that I had lost my faith, though I had not become someone who hates faith – it was just gone.  She had noticed my flailing to make sense of my world, again and suggested a trip up north. A trip that included good food at The Turquoise Room at La Posada in Winslow and drives up to Hopi.

I pondered her offer, and thoughts of how I always loved going up to Hopi as a child were recalled.

I grew up in a magical place, there is a reason it is the birthplace of magic realism. My move to the USA (because I refuse to call it America, because frankly there is North America and South America and the USA being called America has never sat well with me) was not an easy transition, the USA doesn’t understand that kind of magic. There are exceptions to that. One such place was on my regular visits to Hopi as a newly transplanted child. There were two Hopi women who brought me back that magic. One was Helen Sekaquaptewa and the other was Elsie James and interestingly enough I just learned that they were related.

Elsie was local, and I got to see her more often. knew my great-great grandfather from when they both were at the Indian School in Phoenix, as a matter of fact he apparently introduced her to her husband. Whenever I would see Elsie, she would smile and tell me how much she loved my grandfather. She taught me how to make fry bread, often sitting with me at festivals at the heard Museum – teaching me the right consistency of the dough and the best way to pat the balls into a good piece of fry-bread, poking your fingers just so in the middle to prevent it from getting too puffed up when put in the oil. I cried deeply when I went to her funeral, she was extremely special to me.

Helen was the person that showed me that the special kind of magic from my youth in the Andes was present in the USA. I was relatively new to the USA, when my family went up to Hopi for a snake dance (probably back before non-Hopi were banned from freely joining them). I remember sitting on the roof, watching the most amazing ceremony – if you ever get a chance to see a snake dance, you should – they are memorable. I remember being in her kitchen, helping her fix food, and then I remember her taking me outside with her great-grandchildren to forage for wild spinach. Pointing out things that she thought I would find interesting as we walked to the edges of the village on the mesa.

So it was with these two influential Hopi women in my life that gave me a tie to my ancestors and the ability to see the magic in the land that I said yes to my mother, regarding a trip to what I could call my most local sacred space. It was a pilgrimage.

The drive up to Winslow was nice, we took the route through Heber-Overgaard and Holbrook. The Hotel La Posada is a fabulous space, designed by Mary Colter. I have a friend who claims, and rightly so, that it is a space full of feminine power that one can draw upon. We dined at The Turquoise Room.

I struggle as I write the next parts, as I want to honor Hopi guidelines on etiquette and yet share my experience as it relates to coming to greater peace with my own mortality and my hopes that I am of a Pahana clan. I met a Hopi prophet once.

We drove up from Winslow through to Second Mesa and the Hopi Cultural Center (HCC), stopping at the Little Painted Desert (in Navajo) on the way.  One of the things I like about visiting the Hopi Cultural Center is that there are carvers at the edge of the park next door.  There is something special about meeting the person or their family when purchasing something from them. You can find baskets, teas, rattles, bows and arrows, sculptures and Kachinas. I was able to bring to my life, five Kachinas; Crow Mother, Grandmother & Long-Haired. and Snow Maiden & Warrior Maiden.

I didn’t bring Snow Maiden to me at first. We decided to drive to K-town and see what was going on. The story is that a bunch of MIT student drove through once and fixed up a bunch of their computers, promising to return only to not be seen again.  One of the people with me has a son that teaches there and so we went to take pictures to share with them and see if we could get some MIT students to return. The whole ride, the image of her was in my mind, she was beautiful. We drove back to the HCC and held in my heart that she was still there. She was. I talked to the artist and his friend (who made my Warrior Maiden). They shared that the dances were happening this week and that I might see the Snow Maiden if I visit the ones at Shungopovi.

Front and back of my Snow Maiden

There was some discussion about going, but I was given the ability to decide and I did, I chose to go. If you are unfamiliar with attending ceremonies, revisit my link  above for etiquette. We drove to Shungopovi and looked for people standing on a roof, and headed that direction. We found a place to park and walked toward the sound, following people who were headed toward it. W walked through half-finished houses, through water puddles and made our way to the ceremonies.    There were not many white people there, maybe four aside from the three of us.  We sat on a door step and watched the ceremony.  It was special, oh so very special. And it was more exciting that I actually did see the Snow Maiden.

One of the things I learned from my friends on Hopi is that in a ceremony, the Kachinas are the gods… so, being able to see the ceremonial Kachina of the one that called to me was extremely special.

I ended my trip with four female Kachinas and one male.

Another goal of the trip was to find my tumor rock. This is something that my boss entrusted upon me.  When she got cancer she was in Sedona and saw a colorful iguana-esque lizard on a rock.  This was a message to her and she kept that rock, it was a representative of the cancer experience she was going through.  She came back and told me about the experience. I was in a shop a few days later when I found a lizard that could be put on the rock, as a representative of the experience.  When I was diagnosed with my second cancer, many years after hers, she brought me the lizard and said it was time to entrust it to me, that I had to find my rock.  So, I looked for my rock. I actually found two, one just outside Winslow and the other near  Heber.

My tumor rock while Warrior Maiden and Crow Mother watch.

I feel more optimistic about everything now. Instead of saying, for example, “my appointment tomorrow will tell me if I have metastasis” I am thinking in terms of “tomorrow I will learn if we can rule out metastasis”.   A simple exchange of words, but they have so much power.

 

 

the sky is empty

“I talk to God but the sky is empty.”
~ Sylvia Plath

Ge’ez, Sylvia Plath is sure a downer!

When I was little, I thought my grandparents lived in heaven, not because they were dead, but because they lived in Arizona (a stretch to see how I got here, I can imagine, but bear with me)….

I came to visit them with this kind of sky:

From this kind of sky:

So, when we went to visit (usually in early summer) our plane went up above the clouds, but never came back down through them… so, they must have lived in heaven, right? Please, also note that this was also around the time I was very saddened that Zeus and the pantheon of gods was not “real” and that my mother found me once, kneeling in the front yard praying to the moon-god. I was a wildly spiritual child.

Considering my family did not practice any real form of faith as I was growing up, they were Protestant in Roman Catholic countries after all – and any Protestants that lived where we were tended to be evangelical missionaries and not the most fun to be around – add in that we were considered to be “converted” and there were all those heathen Roman Catholics and indigenous cultures that needed to be saved. 

Many people tell you to lean in to your faith in trying times like this. It is amazing how much you seek something out, something that requires faith. But looking for something that is comfortable, that does not mean I must have a rebirth in any fashion, that means I don’t have to believe fossils were put on earth by satan to lure us to his evil ends,  something other than the spiritual connection to the cancer I got is because I have mommy issues, something other than I am not godly and got cancer because I am being punished… 

fuck – fuck – fuck – fuck

FUCK

How do you find faith in the midst of such fucking insanity.

Notice that is not a question, though it probably should be.

Anyway.

I learned that I had a sizable chunk of muscle removed with my last surgery. Granted, it was not the breast surgery removal of days of yore when women begged for a radical (nay, they wanted uber radical) mastectomy – the kind that took out muscle and bone (think ribs and clavicles). I’m missing 2 inches of chest wall muscle… and I’m still in disbelief… faith.

The way humans think is sometimes shocking to me. BUT, and it is a YUUUUUGE “but”, I get it. While my head understands that if treated correctly a lumpectomy has the same results as a mastectomy and you heal faster – but WTF does treating something correctly mean? My tumor was muscle adjacent, so does that mean that one of those a$$hole cancer monsters escaped and is it hiding somewhere? Somewhere that chemo and radiation can’t find?  Faith.

This is where finding faith again is crucial – but it is so freaking different this go around, faith that is.

If you are prone to that which is beyond the physical and don’t judge, I can share how I am re-learning how to lean in to faith again.  The thing is, I will most likely appear a heretic to you.

The one thing I know, is that I don’t think faith is about re-birth (that concept is what caused me to abandon faith before)… if it is for you, that is awesome – but I don’t buy it one effin’ iota.

I, beautifully enough, am finding this process of rediscovering faith kinda cool. and a bit painful.

It is especially nice since there is a disquiet in this process, of being a person diagnosed with cancer. It was present the first time and it is present again this time.  The subtleties of it that I experienced the first time is magnified, but both of my cancer experiences, so far, are incredibly similar… at least internally.

Because my first round was stage 1 and caught super early and only required surgery it was subtle. I felt like a fraud of a cancer patient because phht, it just needed surgery. People (most of them), aside from the time during the surgery put me at the bottom or low-end of a cancer continuum (that was practically equated with being cancer free).

In this round, where I am currently listed as stage 2B (and probably only because they did not take out more nodes and we will see if that changes after the next battery of test results come in), it is still sufficiently low on that continuum that I still feel like a fraud (though only less so because, after all, it looks like I am getting chemo and radiation this time) and the news about the cancer itself has just gotten progressively worse. Many of those same folks from my first experience are still like “well, you aren’t dying”.

I am adding silently  in my head; “that I know of” because I am still waiting for more tests and results of tests.

No, I am not dying (well, at least I don’t think so, but as I said… I will have a more definitive answer after I see the results of the next test). Trust me I celebrate that!  I am not healthy, I have a chronic disease that gives me (according to my radiation oncologist) an 81% 5 year survival rate (though this varies depending on the sites with such data). Yes, 81% is super awesome, but before this all went down I was with most others and had the general average population of a smidgen over 98% . A 17% drop in my life expectancy is still a crappy thing to have as a part of my life.

Trying to balance a good attitude with crippling doubts is a strange place to be.

I struggle. The struggle is real. Not because I have a Christian need for an after-life – but because I want to be more than just a life form – I want something divine to be a part of this experience, I want to lean in to something when I am so riddled and consumed with anxiety. A set of rituals that I can be a part of, a community where I feel like I belong. IN my head I often say to myself, I just want to be loved through this.

I read about Sherman Alexie today, something that I struggled with, but which spoke to the spiritual little girl in me that the unseen world is there for those that listen.  (the story is here).

I have found great comfort in so many people in my life, women and men – willing to be a part of this process with me.  I hate to lean on them, how do you answer the unanswerable to someone like me desperately seeking?

 

 

Knowledge is only a rumor

Knowledge is only a rumor until it is in the muscle.
~Papua New Guinea Proverb

I enrolled in an education program.

Now, I love learning so much that I would say that I am one of those people that is most definitely considered a life long learner. I don’t mind learning the bad with the good, and going into strange learning experiences (something outside a classroom, really), but this last one seems weird to me.

I will be attending chemotherapy school. Actually, it is called Chemotherapy Education – but that is pretty much the same thing as going to school to me.

I hear that my final-exam will be fucking brutal and will last fourteen weeks (from first to last). It’s followed by a six and a half weeks of radiation final-exam, which so far seems to have no prep class, it is just a test after you meet with the “professor “.

I also have the pathology report from the last surgery. I have clear margins (Yay!!) but they took out a 2 inch chunk that included a lot of the item pictured below (they removed two chunk, just one had muscle included). It explains why it hurts so much. Granted, there are moments when I only notice a certain heaviness – but then…

4311888797_7edc345a9f_b

Pain – sharp and stinging. With nothing that feels like its impetus to explain it (yes, it is just doing it healing thing). Much like labor pains that kinda leave you breathless and taking deep breaths to work through.

Then, “the cancer” is on the side I sleep on – which makes sleeping extremely uncomfortable and includes propping my side with pillows and not really resting comfortably at all through the night. Thankfully, I know this will pass.

Muscle is a beautiful thing, especially skeletal muscle – just look:

Skeletal striated muscle

So, I listen to it, and when that electric feeling of my muscle healing itself I try to get quiet, and let the process happen. The waves of nausea this process involves is pretty fascinating too – perhaps it is my body prepping me for chemotherapy?

I was hoping to be an exception and not get a port, but one of the potential agents in my chemotherapy cocktail is so caustic that if I move and a bit drips out it will destroy my muscle.  Holy Fucking $hit people, it will destroy my muscle – and I am going to have it in bloodstream – how miraculous is my circulatory system that this chemical that destroys muscle doesn’t do the same?  (this is a place where faith starts to come in for me, more on that running dialog in my brain later).

Seeing my surgeon today!

 

a flash of lightning in a clouded evening sky

“Hers is a timeless life weaving through other longer lives like a flash of lightning in a clouded evening sky.”
~ Beatriz Fitzgerald Fernandez, Shining from a Different Firmament

I think that the hardest part of this is trying to stay in a good mood, up-beat, positive. I am a period of waiting and it is just too much time for me. I miss the good ol’ days of daily appointments meeting, doing new things, meeting new people, taking new tests. i was exhausted during that phase of this – but things are settling, and people are on vacation, and I can’t seem to speed up time to get this crap experience behind me.

https://www.museodelprado.es/en/the-collection/art-work/women-gladiators/ee076233-5858-4a35-a5c0-9ce631cd5382
Women Gladiators by Jusepe de Ribera [Public domain], via Wikimedia Commons
People keep calling this cancer experience a battle, a fight, a difficulty… blah, blah, blah. I hate those words, and you can throw in journey in to the mix.

The truth is, that there is a certain call to gird up one’s loins in this stupid “experience”.  I mean there is prepping oneself for a cold and then there is cancer.

The other side is that in spite of the certain enlightenment we have in the western world about disease, cancer is still pretty weird.  I could share horror stories with you of a few of my dear, beautiful, well-meaning friends saying crazy shit to me about my new-fangled diagnosis – there are still people out there that think a radical mastectomy is the way to cure this beast and further they feel it is OK to imply that if I choose otherwise would be tantamount to saying I don’t want to try to stay alive for the sake of my son – how incredibly fucked up is that?  For the record, I think they have a brain injury, I tried to be patient.

Then there are those who are convinced that injecting THC into my boob will make it all go away. Bless them, but its exhausting because they love me and will argue with me about its advantages. I don’t for one second believe that doing this will cure me of cancer, it might well be part of the process but it isn’t the only one.

Maybe the weird part is that in spite of being the one with cancer, I am still forced to care for those that love me enough to talk to me about their opinions (none of these are medical peeps, they have a different level of communication about this with me).

I have a friend that is a nurse that is coming with me to most of my appointments and who checks in on me and for all the love in the world, isn’t trying to write my narrative of this experience. She knows, for example,  that I hope to avoid having a port if possible, so can advocate for me if I need it, but also knows that if it isn’t something I should avoid that she can walk with me in those facts.

Words matter, in spite of an all-encompassing need for the individual to throw out mental garbage via vocabulary – they matter –

I am not say that cussing like a sailor is bad, I love my salty friends, they keep it real for me.

I am not saying you have to temper each comment before you utter it, some of the greatest shit I have ever heard can come from those who have a tendency to insert their foot in their mouth.

I think I am talking about the need to talk for the sake of fucking talking, which is a luxury that should be rarely offered up.

Life is hard enough without verbal lashings for the sake of;

  • talking
  • sounding authoritative
  • funny
  • elitist
  • or what the fuck have you.

But what distinguishes talking like I refer above and talking – as in the real deal?

I think, and mind you this is my own thoughts, and this is a journal, not some expert piece of advice for the masses – this is me thinking out in type.

So, I think that a skill that is lost is that talking (the real ind)  is about the relationship between two or more people trying to communicate ideas to each other.  I don’t know if in our digital age that we can recognize this, mainly because we might be too busy trying to show someone we love them by sharing a silly buzzfeed video.

I do have people, though, that are cheking in on me – sending cards and the best emails and texts. they are so wonderful and when I get their notes I am humbled and am able to refocus on the gift of them in my life.

Like the one that sent me this for Independence Day:

Our rebel Pope (I say rebel because he is a Jesuit and they are apparently considered barely  Roman Catholic) said this:

“To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
~ Pope Francis

That quote was about a baby in the UK, I think – but there is something there that touches on what I am saying and you don’t have to be pro-choice/life/retrograde-abortion to try to appreciate it.

It brings back the experience I had when I dealt with cervical cancer and having people wanting to overwrite my narrative with the narrative of others – that should never have happened (I am still a little bitter). This is my story, I get to tell it.

In person, to someones face, I tell it very differently. On here, it is very raw, unfiltered, ever-changing, fierce, and scared-shitless, full of shit grammar and spelling.

My sister posted this song today on her social media, so as part of my quote/picture/song – I post it here (I miss her and my baby brother, they are my half siblets and live too far away).

Crisis management isn’t the same as crisis maintenance 

The Edge… There is no honest way to explain it because the only people who really know where it is are the ones who have gone over.
~ Hunter S. Thompson, Hell’s Angels: A Strange and Terrible Saga

This second surgery is a beast, I’m wiped out. I have felt off and with so much insanity in my life right now I wasn’t sure from whence it came.

I took the perfect spawn with me to surgery, it was outpatient after all. I’m not sure it was the brightest move I’ve made.  He was visibly upset by seeing me with an IV in my hand. He couldn’t stop touching and kissing me as we hung out in pre-op. My surgeon, who is a fucking rockstar, managed him very well. She asked him to please not correct her if he heard her say something wrong, it played right into his ego and made him more relaxed.

I went out to visit my mother, resting with an incredible view of “the supes”. I still felt squirrelly and off. Thankfully my Schatzy knows me well enough that he did the two things that turned the tide.

I’d like to imagine that anyone getting a prognosis that is worse that initially identified would feel the same.  I lay on the couch staring out the picture window when my dark side took over. I was trying be quiet and listen to my body in order to feel what muscle had been cut during surgery. 

As I did this I felt black blobs of doubt surround me, hopelessness descended and I hit a certain kind of despair.  My husband said he had been watching me and saw my face change, so he ran up to me kissed me and whispered in my ear “don’t do this, we will make it”. I felt the darkness evaporate.

Eve (The Nightmare) by Paul Gauguin

Later, as I lay on the couch again, my husband rubbed my feet. That foot massage was a miracle, the feeling of off and squirrelly dissolved. I began feeling more human again, something that I hadn’t realized I had missed feeling.

It’s interesting to note that a foot massage has been a transformative event both times I’ve had cancer. 

So here I am today, back to trying to find humor in this completely fucked up situation. 

Grateful for a tribe of people helping make this easier on my family.  Grateful for a family that’s here for me. Grateful for my mother and allomother.

So where’s the humor? I’m searching for it high and low. I promise.

::deep breaths::

OK

My surgeon used medical grade superglue on my incisions. Which is pretty cool.  I have two incicions one near my armpit and the other around my nipple. Only my armpit incision needed to be re-opened. Which means that I have a nipple that is covered with flakes of superglue. Yes, the superglue is flaking off and I’m reminded of eucalyptus trees and of peeling bark. It’s weird. My nipple, however, looks great… underneath it all. 

This is all starting to feel like a comedy of errors when coupled with my Hello Kitty “freezer burn”.

Intellectual fugitives – update

He was interested in research (or at least feigned interest), but Li was considered an intellectual fugitive, unable to commit to any one question or plan.
~ Siddhartha Mukherjee, “The Emperor of All Maladies: A Biography of Cancer”

I am listening to Dr. Mukherjee’s book right now and this phrase caught me. I love the idea of being an intellectual fugitive.

For the record, Li was the physician responsible for the first successful use of chemotherapy, he was fired by the NCI because they though his idea too aggressive. 

One of the things that I love about anthropology is that it, out of the plethora of other intellectual disciplines, allows for more of this than any other.

Someone I knew called me a dabbler once, I think they meant it in something akin to this idea – but dabbler doesn’t sound as nice.

I think we need to have intellectually curious people, a cohort of intellectual fugitives, people who can see relationships beyond the one question or plan. It is arguably a part of that road map to discovery, and a necessary aspect of the path.

But that is merely a musing and not what and why I am here today.

you crazy nipple haters
that orange circle is a modesty patch for all the nipple haters I know.
This cancer shit is tough no matter what – there is so much fear that needs to be managed. It is actually surprising, a test of human resilience perhaps – makes me think I am a devout coward, because I frankly hate having to do this shit.  I find that even keeping busy is not enough to bring peace of mind for a stretch of time longer than maybe 15 minutes.

Where am I right now…

  • I am very close to three years of remission from my first cancer.
  • I am newly into the diagnosis of stage 2B breast cancer, the edge of what is considered early detection.  Yay right, but my heart gets heavy when I think about how my lead in to surgery was so close to being sure that it was stage 1A – and that  following it jumped to 2B and that this is huge and makes my heart feel heavy and squeezed.

My cancers are distinct and unrelated. I write this for those of you that might be thinking this, it is not metastasis. A blessing – and how weird is it to call having two cancers a blessing.

I do know that I must have both chemo (regimen is still to be determined)and radiation (six weeks), with hormonal therapy for 5 to 10 years.

I just don’t really and fully know what that will look like yet.

 

 

 

tickling the tail of a sleeping dragon

“tickling the tail of a sleeping dragon”.
~ Richard Feynman (the story behind this quote)

There is an infinitesimal moment in certain kinds of situations that have about them a sense of the surreal, of suspended animation, of some sort of unexplainable something that detaches you from your surroundings and yet manages to implode you into them. Everything makes sense, yet nothing does.

Getting told gut wrenching news can be one of them.

I had wanted to come here and put into written posterity my fight with Hello Kitty that lead to a paisley shaped second degree burn. A story such as this had elements of the absurd coupled with a funny anecdote about managing pain, discomfort, and numbness after surgery.

I’ve been pondering, as well, putting down the why… as in why I share this “journey” in the way I do. (side note: I hate the word journey in this case… Journey is a beautiful word, cancer should never be a part of its etymology)

But really, all I “feel” like I want to do right now is to throw things and break them while cussing like an angry drunken sailor… at least until I see that in the whole scheme of things I’m pretty lucky and behaving like that impulse, is pretty self-indulgent and whiney so I don’t and just end up having to tell my husband that I’m talking to myself again.

I do talk to myself quite a lot now, primarily because I start thinking of people who have expressed some dislike towards me and it’s me asking them if they’re happy now that I’ve got cancer… again.  It’s a crazy conversation I am having with myself. I figure it is how I am processing the whole fault of this situation – as in it is my fault while trying to understand why – I must be a terrible person, but I don’t think I am but maybe those who do think I am can understand this and I am, I guess, trying to see it through their eyes. Again, I can see this is a clinical process, but it is one I am going through – it is so weird.

May be that I need to be appropriately embarrassed by my “fight” with Hello Kitty, and get my mind off of this sinking hell hole of self-pity or self-loathing.  The “why me” is a constant battle in managing a chronic disease such as mine, even more so this second go around. I fight it through humor and laughing at myself.

So, back to Hello Kitty, and this popsicle eating dollar store Hello Kitty gel ice pack in particular…

This is the beast that burnt me

In a nutshell, I wasn’t thinking one single bit.

I sleep on my side, and on the side where I had my surgery in particular. I am one of those people who turns in to a heat emitting furnace when sleeping which made my incision sites (yes, there are two) feel warm, too warm. So, I would wake up and stumble to the kitchen, open up my freezer and take out one of my perfectly sized Hello Kitty gel ice packs and put them in my sports bra and head back to sleep. The instant cooling felt wonderful and in such a state nary a consideration was given to the fact that I put a gel pack straight on my skin. Please take this as a warning, doing this is unbelievably stupid and I know better and still did it.

The resulting second degree burn is paisley shaped and about two inches long and an inch wide, its blister has popped. I will admit that I have to fight the urge to draw on it and make it pretty, if only to be a distraction that I jumped up a whole stage in cancer.

All of these distractions I give myself feel like I am tickling the tail of a sleeping dragon, because the medical news I get never seems to get any better, just gut-wrenchingly worse.

::tickle::tickle::

 

What’s something worse than being told you have cancer?

One is, being told you have cancer again.

img_4669
that orange circle is a modesty patch for people that hate nipples.

I was living well with my closing in on three years from my bout with cervical cancer. I was finding my way out of the darkness that descended after that. Life was good,

I was told I had breast cancer in May. I join a group of over three and a half million women in the United States that have a history of breast cancer. That is a BIG a$$ clan.

Technically, I must admit, I am not going to be one breasted, I will be more like 1 and a 1/2 – I need to change the image above (I suppose).

The one breasted story comes from reading the amazing book Refuge by Terry Tempest Wiliams, and read this here.

The Amazon comes by way of my birth and childhood, in a city high in the mountains that help feed the Amazon river and its tributaries…

The Amazon also comes by way of my height, people associate tall women with the narrative of the Amazons from Greek mythology.

These Amazons were also reputed to be one breasted, some say because they were warrior women – this is up for debate.

I got here because women. Women put into place a series of experiences and events that allowed for me to get a mammogram that detected the mass – it is small and deep enough that no one can feel it.

This is from a letter I sent to the women who had helped me detect this early.

The whole thing feels a bit surreal. I think about what had to be in place for me to get my mammogram and it is rather miraculous and so heavily dependent on so many women that are in my life.

  • My mom for taking me along to the nurse training clinics for women’s health for the nursing students at ASU.
  • My own professional health advocacy efforts through both ASU and UofA.
  • My aunt, a survivor.
  • Rita who started a local Breast Cancer Fundraiser that was supported by the Junior League of Phoenix (JLP).
  • Kay, who wrote a grant back in 1990, through which I would be propelled to join the JLP and continue the effort.
  • Kim, whom I met through Gail (my mentor), who asked me to come help translate for Kay’s grant because I was a practicing breast cancer advocate (not an activist as someone recently referred to what I did as).
  • The many women in JLP leadership who let me continue to manage and oversee the mammograms at rummage.
  • Pam and Catherine for helping secure funding for the continued efforts of the mammograms at JLP rummage.
  • All the women and their stories who have passed through the mammograms at rummage project for the last 17 years.
  • My oncology Nurse Practitioner, whom I see for a previous cancer, that said it would be a good idea to get a mammogram back in December.

If not for the combination of the women above, I would not have found myself in the right place at the right time to detect my cancer early.

Life is still good, a bit more overwhelming than I would like, but good.

My surgery is next week.

Radiation and other will be shortly after that.

Send me good thoughts.

 

supernovas in disguise

He said the freckles on his arms
were roadmaps to the sky,
and the bruises that he carried
were supernovas in disguise.

“Stargazer”
~ Alaska Gold, Growing Light

Some days are filled with faking it to degrees you never wanted to have to fake it to.

It’s like that scene in Pretty in Pink where Margie Potts tells about how she never went to prom and something about losing her car keys… wait, let me look….

“I have this girlfriend who didn’t go to hers, and every once in a while, she gets this really terrible feeling—you know, like something is missing. She checks her purse, and then she checks her keys. She counts her kids, she goes crazy, and then she realizes that nothing is missing. She decided it was side effects from skipping the prom.” (source)

Yeah, that – only its like Oh yeah, I fucking have cancer, for the second time.

So, I set out to count my proverbial blessings and try to feel better.

Blessings:

  • My mom and aunt are not being a$$holes about this time.
  • I have a cadre of friends that are staying in touch and making me feel loved.
  • I am making sure that my choices are about how I want to manage this and not so much about how I can help others manage this go around.
  • I am working and have a job.

OK, that is all I have the energy for right now.

ANYWHO…

Jane (my tumor) is being a supernova right now, in that she is purple, like grimace or barney purple. My doctor warned me yesterday that it is most likely a moving supernova (he did not actually call it a supernova) and she will take a ride all over my breast. This should prove interesting.

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Jane Mansfield, My Champagne Supernova

Poor Jane, she looks like hell. She feels like hell. She just wants to go to bed and sleep.

Hey, maybe talking about my new (and *improved*) cancer in third person will help with resilience and shit?

Anyway, I get to take off Janes’ dressing this afternoon.  I wish it were some sexy erotic experience but it will most likely hurt like hell. I will take pictures, I probably won’t post them.

Also, I have been blessed with (up until now) really nice breasts – my whole life – I am talking good lookin’ boobies – they are symmetrical even.  Yes, I am rather vain about them too. So, here I am, facing a life with a deformed irradiated breast in the near future. I am going to be very honest and say it breaks my heart, I love my boobs whether I was skinny or fat, , tanned (guffaw)they were a source of pride. Will I be proud of them after they (the right it, really) go through some huge surgical and medical transformation? Fuck. I hate facing my vanity and feeling like I am stupid. I mean…  it is a freakin’ boob. It is not my most charming asset (or is it?). OK, now I am just trying to be funny. Which means I am feeling less freaked out by this whole experience.

Though, having your brother drop off a package of granny house dresses that our mother bought me made me feel old – because they are GRANNY DRESSES. They button up the front though, and between the surgery and the (hoped for) brachytherapy radiation,  it will be easier to wear in recovery phase. So, I guess I better pull up my granny panties (not at that stage yet, thank you baby jebus) and buck up.

Now, I want ice cream.

 

 

May I introduce you to…

“It is hard to look at the tumor and not come away with the feeling that one has encountered a powerful monster in its infancy”
~Siddhartha Mukherjee

I friend mentioned that she felt a certain disconnect to what is happening to me this time around so here is a brief update for her, for me, for the angustia inside. So, it has been one month since the first biopsy. Hmm – just realized that I had biopsies a month apart, that is crazy and will calendars never cease to amaze me with their power of recollection.

Anyway, I sit here today, with a purple right breast and my saga as a wounded Amazon continues. Except this time I am waiting to find out if there is a second mass of ye’ ol’ devil cancer in there. What has happened since I yelled cuss words at my fabulous doctor when the news was given? Well, let me tell ya…

I have seen WAY TOO MANY FUCKING DOCTORS. Some of them good, some not so much.

I sought three opinions, one of those was with a tumor board group. That was awesome, in part because it showed me that one of  the oncologists I was leaning towards made an error when we spoke. They misread my diagnostic mammogram and ultrasound report and sent me home after that first visit wondering all sorts of crazy, worrisome and untrue (at that time) shit.

I immediately got a horrible cold  (stress does that ya know, makes you sick) and wasn’t sleeping, and frankly looked like shit. The oncologist I ended up picking  ended up giving me an rx  for some meds to help me sleep. Thankfully I just needed one for that to change. They also ordered an MRI – which found something called a linear enhancement. This linear enhancement (enhancement of  what, I am still wondering) required another biopsy, which I had yesterday. No, this was not your regular biopsy, it was an MRI guided one. It was a process that must have been designed by men because it was fucking awful in so many ways. Today, my breast is a purple mess, and I can’t yet see the incision site. Today, there is a certain kind of peace though – testing is behind me – now it is about waiting for results. Results I should have by Monday.

I am trying to have a sense of humor about this, as such I have named my primary tumor Jane Mansfield. It is a dark humor kind of thing (I seem to recall that the real Jayne Mansfield was beheaded in a car accident, but it is also because I want to find the beautiful (and Jane was a beauty and no monster) in this insanity. Let me introduce you to Jane (I did this little project before I knew the name, fwiw, and there are several versions but Jane is now official) :

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Jane (not Jayne) Mansfield

 

The other craziness is that all this has come down during a revisit with faith in my familiar “theistic-agnostic-I love Our Lady” form, and it was cool until last week. A friend asked me about who was providing me with pastoral care during this, and I didn’t know what to say.  As a deacon, I was part of pastoral care, you kinda know that people have to want it. I have, after all, told that god with a capital G to fuck off since my diagnosis. I don’t feel bad about doing that. But in terms of receiving care,  I also know I don’t want to pray, especially not with anyone else. I am unsure how to proceed on this front, it feels like something I should want or need… yet, I don’t…. but I am so totally unsure of how to proceed regarding receiving pastoral care. I don’t feel the community for it, so it doesn’t make much sense.

I still have not told my perfect spawn, but what is there to tell. I did talk to a child life specialist about how to handle this and got some reassurance that I was right in waiting to tell the news and how to handle the treatment phase (e.g. everything else).

So, that is where I am at. I have a personal photo journal of this experience, which I may share at some point… but I am really going to have to want to share the pictures of my bruised body and provide evidence of my bruised ego.