Friday, November 11, 2011

I Am a Lot of Things

And by that I mean that I am experiencing a lot of emotions right now.  And that I am aware that, like Whitman, "I contradict myself, I am large, I contain multitudes."

What brings this on?

Well, I went to Celilo this week for my monthly check in.  Having discussed the (very good) results of my CT scan during last month's visit, I figured this one was mostly a matter of getting the IV needle into a vein (not always easy) and then enduring an hour in the noisy infusion room because I forgot to bring my ear buds.

Wrong!

Turns out the CT scan results I discussed with Nina last month were preliminary-- the full report came in to the new oncologist (Doogie Houser or Dr L) after my visit.  Oh.  And the full results?  Not so good.  Did Dr L speak with you?  Ah, no.  He needs to speak to you.  Oh.  Okay.  Nina gets the young Dr and they both stay for our discussion.

There appears to be some new bone metastasis in my sternum.  Oh.  And even though everything else looks pretty good (liver mets continue to shrink, etc) these new mets make Dr L think we should change hormone therapy.  To something called Aromasin.

As the name implies, it is another aromatase inhibitor-- same "family" of meds as Arimedex.  It has a "steroidal element"  that changes the pathway it takes to get into the cell.  Which Dr L hopes might make it more effective against the bone mets.  Other then that, it would likely have similar side effects as what I am already dealing with on Arimedex.

There is no hurry to switch, they know I like to research and think on these things. At my request,  the three of us to go into Dr L's office  to see the actual pictures of the latest scan.  Dr L wants to make sure I understand that he is NOT a radiologist--  his ability to point out to me just exactly what we are looking at is limited.  I ask if it is possible for  me to look at the images with someone who is skilled at interpreting them.  Yes, of course, he'll call the HR hospital and arranged a meeting with a radiologist for me.

And he did!  That was Tuesday and I sat down with Dr. Terry Finstad in HR today.

Quothe the radiologist, "I don't know why more people don't ask to do this..."  

Me, "I don't think most people even know they can ask."

But as you well know, gentle readers,  I like information, and as a hippy-dippy mind-body-spirit person, I like to give myself visual images to work with--  plus I ain't afraid to make what some doctors might consider to be "unusual" requests.

What do the pictures reveal?  As often in medicine, things are not as black and white (in this case, literally) as they might at first appear.  Yes, there are clearly little white glowing spots (indicating growing bone-- that's the form of bone mets I have)-- but if we go back to the images from three months earlier, hmmm, it does look like there might be evidence of these same little spots-- not as glowing, not as clear, not as white-- even back then.  So are these NEW mets? I ask.  Hard to be certain. They are clearly more developed mets.  But they are still relatively small-- I could fit two of them on the fingernail of my pinkie.

We can clearly see some increase in the size of the bone mets inside my L1 and T8 vertebrae.  We discuss how these are well within the shape of the vertebrae itself-- not threatening to protrude into my spinal column, and cause other problems.  And since this mets does not eat bone away, the danger of fracture due to metastasis is low.  Perhaps the clearest difference we see between scans is the evidence of the diminishing lesions on my liver.  That is good news.

So do I change meds?   Good question.  The radiologist isn't sure what he would do himself.   Regardless of whether these mets on my sternum are brand new (which seemed to be the deal-breaker for Dr L) it looks like Arimedex is currently failing to totally inhibit my bone mets (what is less certain is that it ever did), but it has been effective against  the liver mets...  So, do I change meds?  I don't know.

I don't wanna.  But I think that is largely because I don't wanna entertain the idea that the current medicine is no longer stopping the cancer in its track.  I want it to work.  Period.  I wanted to be one of those people who spend ten or twenty years on a single hormone drug before they have to change up-- or before they die in their sleep from old age...  Let's face it, I don't wanna have cancer.  Butcha do, Blanche, ya do!

Amazing how quickly we put that kind of thing behind us if  and when we can, and how shocked we are when it pokes up to the surface again.  OH, right.  I still have stage four cancer.  This rug can get pulled out from under me at any time.  True for all of us, yes, but, um, one would think it is a little less easily denied for someone like me.  And one would be WRONG!

I am shocked.   Really shocked.  I am shocked to feel like death has landed on my doorstep all over again. (As if I should be immune,  like I gave at the office or something.)  And I am gob-smacked to realize how shocked I am.  Kinda a double whammy.

I can barely put one foot in front of the other.  Or maybe it is more accurate to say I can ONLY put one foot in front of the other.  Before sending me back out to the infusion lounge, Nina reminds me that this "change" in some ways doesn't mean much of anything-- I still feel well, that is what is important, that is the actual reality--- and I am still doing remarkably well.   Under my circumstances.  Yes.  Okay.  Thanks.  I will think about all this and get back to you. One foot in front of the other.

Okay.  But I am still dying.

Okay.  Yes.  Everything that lives will die and I am not immune to that.  Like Beckett said, "You are on earth.  There is no cure for that." One foot in front of the other.

The rest of the day goes by.  I am sure I will tell you more about my time in the infusion chair, about  stuffing my ears with Kleenex and wrapping my head in my scarf to try to drown out all the noise while I get a Reiki treatment from the gifted practitioner I had to rustle up out of hiding in the basement (!).  Oh, yes, you will hear more on that, rest assured.

Driving home I am newly touched again by how beautiful this world is, how lucky we are to live in it-- however briefly.  How could I forget that?  How could my view become so limited so quickly?  Does it really take such a graphic, in-my-face reminder of impermanence to get me to let go of the small stuff and be grateful for the much bigger world I live in?  Maybe so.  Maybe that is part of our human-selves, our smaller selves,  part of what Sobonfu would call our "meat suit," which can so limit our vision of reality.

The Yoga Sutras talk of mistaking unreality for reality and the impermanent for the permanent.  Yeah, we do that.  I do that.

I spent the next day reading in my bed, hanging with my dog, nursing my newly rediscovered mortality.  Ouch.  It is a tender spot.  I have not felt ready to talk about it.  I have been chewing and stewing and just being with it on my own.  I am sorry if I have offended anyone by breaking this news in blog form, but I am still feeling kinda quiet about it.  But I do not feel robbed.  I feel reminded of how much abundance is all around me.

I have some decisions to make about my medications.  I will do some more research  and some more thinking.  It is not an emergency.  It is just the next step.

There will be a step after that.  And a step after that.

Please do not worry about me, my friends.  I am still here.  And I still have some shit I wanna do...  And I guess, if that is the case I got some doing to do.

Wednesday, November 2, 2011

Squirrely

Yup.  That is how I feel these days.  Downright squirrely.

And by that I mean?  Jumpy and distract-able, like I don't want to be here, exactly, but I do not know where I do want to be, or how I would get there from here,  so I would rather just take this day and obliterate it.  (My favorite forms of obliviating being reading, napping, watching HULU... anything but engaging in my life.)

I know that the answer to this predicament is start anywhere, but that is so just what I don't want to do!  I know am spinning in the hamster wheel of my own GD mind.  But knowing all that  does not, unfortunately, free me from it.  And I've learned that I can't just push my way through-- that only ends in stuck-ness + self-hatred.   So.   I decided I would out myself by writing about this most uncomfortable spot.

Urgh!  The thought of it makes me feel sick.  But here goes:

Let's start with the word choices I made above:  Obliterate and obliviate.  Pretty powerful and destructive sounding.  What do they mean, exactly?

It turns out that there is a good reason spellcheck objects to my use of obliviate:  It is a new word --coined by the Harry Potter books!-- meaning (just about) what you think it does:  a spell that makes one forget.  Its origins reach back to the ancient (13th c) word, oblivion, meaning:
1. The state of being completely forgotten or unknown.
2. The state of forgetting or of being oblivious.
3. Official disregard or overlooking of offenses; pardon; amnesty.
And obliterate?

1. Destroy utterly; wipe out.
2. Cause to become invisible or indistinct; blot out.

All righty, then.  Any questions?   

Turns out my word choice reveals my state of mind far more nakedly then is really comfortable.  (Ah, yes, note to self:  Please Remember--  that is why I write.)   Uh, and why exactly am I even thinking about sharing this on the World Wide frikkin' Web?  Oh, yeah, in case it may be of service to others...  Okay.  Here we go.

At this juncture in our narrative, we have landed in a very old and dark place in my psyche (and, thank you, yoga, buddha, jesus and all other powers for good that be, at least I am now aware that I am not alone in this place) where my deepest desire is to disappear, which carries with it overtones of both being utterly destroyed and being forgiven.  The question is not why this desire is planted in me.  We can ask, but really, any answer we might find is beside the point.  And the point is?  Live Through This.  Do not be dead to this.  Even this darkness is a part of being alive.  Lean into it.  Learn to not reject my own rejection.

Such a hat trick.

It ain't easy.  And whenever I've done it before it is only after exhausting all other options.  Because it is painful, so painful, to feel one's own rejection of life, a gift one feels unworthy of receiving.  Is this the seed common to depression, distraction,  addiction, self-loathing-- and to all the many ways those play out in the lives of human beings?

I don't know.

What I know is this:

This is all happening in the hamster cage of my mind. And I do not have to believe everything I think.  If I can change my mind-- Poof! -- the whole world changes.

And #2:  I have been thinking of a poem by Tess Gallagher ever since I started writing this post.  It is called If Poetry Were Not a Morality.  It is always tricky to quote part of a poem and ask it to stand in for the whole, and I suspect it is actually a sin to try to explain the missing part--- so, I urge you to click on the link and read the whole thing yourself, if you are interested. You will not be sorry.

But I will leave you with #3:  This showed up in my inbox thanks to Rob Brezsny's Free Will Astrology Newsletter.  He credits Jennifer Welwood.

Willing to experience aloneness,
I discover connection everywhere; 
Turning to face my fear,
I meet the warrior who lives within me; 
Opening to my loss and pain and ignorance,
I remember who I am and what I'm here for. 
Surrendering into emptiness,
I find fullness without end. 
Each condition I flee from pursues me,
Each condition I welcome transforms me 
and becomes itself transformed
into the blessing it always was.
Best wishes, my friends.   Good luck evolving.  And thank you.