Archives for posts with tag: cancer

‘I am against nature. I don’t dig nature at all. I think nature is very unnatural. I think the truly natural things are dreams, which nature can’t touch with decay.’
~ Bob Dylan

After lasagna, there is little I can think of as being more typically American than the Twinkie.

Golden fluffiness, spongy delight, sugary sweetness…  made to survive a nuclear fallout.  What more could one want from an afternoon snack?

I was not allowed to have Twinkies as a child.  I was cursed/blessed? with a mother who felt that they weren’t good for me.  That they were unnatural, stuffed, not with creamy joy, but with  artificial flavors and artificial preservatives, and therefore should not be a part of my  body’s sustenance.

(She also sent me to school with sprout-stuffed pita-pocket sandwiches.  There’s  no kid who’s gonna trade their Twinkie for that!  So it was, indeed, a long time before I knew the true taste of the Twinkie…)

As it turns out, she was only partially right.  While it is true that there is very little that is natural about the Twinkie, only one of its 39 mostly-chemical ingredients is an actual preservative.  The rest simply replaced the milk and eggs and butter of the original recipe, in order to extend the shelf life.

Eventually, the Twinkie too shall pass.

As an adult, I don’t eat Twinkies either, and I am unsure whether or not my son has ever talked anyone into trading a part of his lunch for one…

No, I only think of them now as I contemplate life and death and the natural order of things…

Coroners and statisticians use the term ‘Unnatural Death’ to refer to death by something other than a natural cause.  And yet, it seems as if the rest of us feel that death itself  is the unnatural ingredient.

Unexpectedly dying in our sleep at the age of 87 with no prior pain or disease, we can accept as natural.  Any other scenario and we resist.   We agree to start swapping out our milk and eggs and butter for artificial replacements in the hope of extending our shelf life.

But what did those early Twinkies taste like?  When they might have just come out of your grandmother’s oven and the flavors of real butter and vanilla (rather than the petroleum-based artificial sort) spilled over your tongue?

(You could try making them at home, but I must warn you, that you will  have to consume them in a matter of days.)

In light of the Twinkie, I understand my partner’s opposition to treatment.  Who wants to exchange their own organic ingredients for chemo-therapies, irradiated tissues, artificial organs…?  And just to extend their life, not necessarily make it better…

Yet, he is nowhere near approaching 87 either, so the element of the unnatural lingers.

But is it dying that is not natural or is it our fight to avoid it?

Certainly, our instinct to survive is strong and I want my partner to survive.  But I also want him to enjoy quality of life.  Yummy and fluffy and sweet.

And when it comes time for the end, I’d rather it were peaceful.  At least in heart if it cannot be in body.

I don’t know of any other way to achieve that other than accepting that death is a natural process of life, and may just be a final opportunity for more holistic living.

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“Sir,” said Han, “he is a dragon.”

“Don’t be ridiculous,” said the Mandarin.  “He’s a fat man who is tracking dirt on my fine carpets.  What do you want here, old man?”

“I have come to help you,” said the little fat man.  “But if you want a dragon to help you, you must treat him with courtesy.  I have come a long, weary way.  Give me something to eat and something to drink and speak to me politely, and I will save you.”

“Now, look here,” said the Mandarin.  “Everybody knows what a dragon looks like.”

~ Story by:  Jay Williams / Illustrated by: Mercer Mayer

My mom used to read that story to us over and over again.

Did she read it so much because we loved it?  Or did we love it because of the manifest joy it brought to her upon each telling?

My mom loves dragons.  Chinese Dragons, she was very clear to differentiate.

I remember them tucked into surreptitious corners throughout the house…  A set of 19th century painted candlesticks, a pair of carved bookends, a lamp base that sat on her private writing desk…

I didn’t really recognize them as dragons, having been raised on western dragon tales.  They looked like caricatured Shi Tzu’s to me, and it wasn’t until I was older that I understood there was also a distinction in their symbology.

For, while we in the west (used to stories of Hero-Knights saving Helpless-Maidens from Malevolent-Dragons) demonize the dragon, the Chinese know the dragon as a being of wisdom and grace, a divine ruler who protects the innocent and bestows ultimate good fortune.

Today is the start of the Chinese New Year.  This year (Jan. 23, 2012 – Feb. 9, 2013) is the Year of the Dragon.  This is to be a blessed year.

But I can’t help but wonder what this means for us westerners.  Have our own narratives conditioned in such a way that we will mistake the auspiciousness of this year’s dragon events as ill-fated?

Already, I am challenged to undress the Devil-Dragon and  search for the beneficent guardian underneath.

Last night, my partner spoke of an alternative cancer treatment option he had recently heard about.  He said that he had actually contacted a treatment center and sent them his medical history.

I know this means that he is feeling worse, and more consistently.

This seems bad.

I also know that the medical records he has are incomplete.

His most recent records are from an emergency hospitalization last May, during which he was told the cancer had metastasized to his liver.

In July, he never followed up with the clinic who found he had spindle cell carcinoma of the heart.  (He forgot, he said, when I asked about it yesterday.)

He intentionally missed a series of tests in December, meant to tell him what is currently going on and give him a view of his current state of well-being.

All of this seems really bad.  Like the Dreadful-Dragon of medieval legend rearing its ugly head…

But today, forced to confront these things in our conversation last night, he has promised to call the specialists.

It was the understanding that the spindle cell carcinoma isn’t some harmless little splinter, as he had allowed himself to imagine it to be.

It is a scary, menacing Cancer-Dragon that is enveloping his heart.

But my dragons-of-old could be defeated by David-like knights, and the Chinese Dragon, swooping in on us today, is a different creature, valiant and bold and divine…

‘Love is the condition in which the happiness of another person is essential to your own.’                                       ~  Robert Heinlein

Yesterday was an amazingly lovely day, with warm weather and blue skies and hikes with lovers along mountain streams.  And this is the setting in which I thought I would attempt to broach the subject of doctors and health and understanding…

The discussion seemed to be going naturally in that direction, flowing with the water…

We were talking of money, my current lack of it, and his generous desire to help me with it.

Now, there is a whole history of reasons why I am uncomfortable taking money from others.  Culturally, we are conditioned to think that needing help, most especially financial help, indicates failure, an avoidable failure, had we only made better decisions, or been more attentive or more industrious or…

Those cultural reasons have been compounded by economic abuses that I have known in other relationships.  Where money was used to control and to shame and to punish.

We discussed those things and his desire to help without any pressure or coercion…  And his hope that I would offer him the chance to demonstrate that…

But I have no fear of his using money or anything else to control me.  He is sincerely respectful and kind and concerned.

But I have refused it thus-far anyway.  My concern is that he cannot truly afford to help me.

There are things that he could use any extra money for… like visiting a doctor.  And this is what I said.

And he just said, as he has said before, even in the midst of great pain, that the doctors can’t really do anything for him.

So I replied, in my typical need-to-know-everything fashion, “But they can at least give you an idea of where you are right now.  That would allow you to look at all of the options and choose whatever seems best for you.”

And he answered, “I am happier now than I have ever been…”

“I am afraid they will say something that will steal my happiness.”

… So, there you go.  How do you knowingly send anyone down a dark alley to have their happiness mugged?

How do you rob joy from anyone?  especially the dying?  especially the one you love?

How can my desire for preparation, essentially for some kind of control in this unmanageable situation, ever be worth stealing my lover’s happiness?

‘We empower ourselves through education and through knowledge, and without that we limit ourselves.”‘       ~ Shakila Ahmad

I am a know-it-all…  well, I aspire to be one.  And not one of those know-it-alls who thinks they know everything, but they really know nothing.  No, I even know how much I don’t know.

And I don’t want to acquire knowledge to hold over others.    I just have this insatiable curiosity that wonders about everything, that wants to comprehend how everything works, what everything means.  I need as much information as possible to understand the world and to, therefore, choose my path in it.

This is at the root of my need to know more about my partner’s cancer and approaching death.

I want to be prepared.  I want to know more than Death, so that I can anticipate it and recognize it and… what else?  What would I do with more knowledge?  Would I try to counter Death?  Would I welcome it?  What?

– Three years ago, half of my body went numb.  Well it was probably closer to 18.7%.  But it was all localized on the left side.  And I had no toe-reflex.  (That is apparently a very bad thing, for those of you who don’t know.)

The experts thought I had MS.

It turns out that I just had a crazy reaction to the emotional stress of my job and family.  But, before I got the results from those final MRI’s I had learned everything I could about the disease and the symptoms of the disease and its progression and impact.  I wanted to know everything, so that I could be ready and I could ready my child and I could prepare for any anticipated eventuality…

– That is what I want now.  To know everything so that I may recognize and ready and prepare.  I want to know so that when I see things happening, I have an idea of what it means… whether it means that Death and I are closer to this meeting.

‘ The question is not whether we will die, but how we will live.’   ~Joan Borysenko

Six months ago, my partner was told his cancer had metastasized and his liver was beginning to fail.  That prognosis came with less than a year to live.  That was a month before he was told it was attacking his heart.   Spindle cell carcinoma.

The doctors wanted him to come in to tell him that.  To explain what it meant.  To offer gentleness and support in the telling.  – He chose hear it over the phone.  He never went in to understand.  I’m pretty sure he doesn’t remember the term.

He doesn’t talk about his illness at all.  It is both his strategy for avoiding death and for being able to live life.

I have tried to respect that, to honor his belief that it is this attitude of defiance that has allowed him to live in a normally healthy state for longer than his initial prognosis.  After all, my desire is to know him and enjoy him and love him for as long as I can.

But what I am finding is that I am unable to do this in the way that I would wish.  My partner’s response to his illness is asking me to do two very contradictory things.

In asking me to remain with him, he is asking me to agree to watch him die.  To experience his dying and the grief and emptiness that will follow.  I can agree to this.  I do not fear death.  But it means strengthening my spirit, readying my heart, preparing for my own care and continuity.

In asking me to ignore his prognosis, he is asking me to agree to act for a future together.  To plan and build hopes and dreams and foster dependencies.  – And while I have thus far agreed to this in words, I am less and less able to agree to it in spirit and mind.  I fear it means even greater loss and grief and disillusionment.

And so I am finding myself reserved and unable to engage in our everyday interactions in the wholehearted way in which I would wish.

Can a mind perform two oppositional functions at one time?  If I am on a balance-wire is there any way to reach both ends?

Is there a way to honor both of our needs if they are conflicting?  If not, how do I determine whose needs are more important?

Is it even fair to worry about my needs in the face of those of the dying?

‘Where does poetry live? …  In the overpowering felt splendor every sane mind knows, when it realizes our life dance is only for a few magic seconds.’      ~Hafiz

My partner is dying.  He refuses to acknowledge it.

My partner has been diagnosed with a terminal form of cancer.  He has known about it for a while.

He is not receiving any conventional treatment.  Medical care is expensive… and requires consent.

The cancer is now attacking his other organs…  His liver, his heart, possibly his brain.

My partner is dying.  He refuses to acknowledge it.

Would it be easy to accept a terminal diagnosis?  When one is young?  (40 now, but 38 at the time of diagnosis.)  When one is strong and vital and useful?  Would it be easy to accept a prognosis that says that you are death walking?

Does it mean the death of all dreams?  Does it mean the death of all hope?  Does it mean death, now?

Might one be better off to refuse acquiescence?  Might one actually live longer, defy death… if one’s brain doesn’t recognize that the body is dying?

My partner is dying.  He refuses to acknowledge it.