Monthly Archives: June 2017

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.

 

 

 

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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.

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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.