Cherubs in Trogir

"For himself, Daniel felt quite calm.  Soon after he had arrived in France, he saw that the way he had lived until that point was no longer possible.  As a child, he had clung emotionally to his own life, acting as though it were highly valuable, sacred -- or at least unique.  ...at Ypres, planning was pointless.  It was worse than pointless, in fact; it was foolish and disrespectful to those who had died.


Instead, he tried to cultivate a kind of serenity, to trust to providence and to place a much lower value on his life, because to have too high a care for it was to suggest that he believed his own existence, his own little breathing hopes, to be more important than those of the millions of the dead; and insufficiently to respect the dead, and the lives and loves they had forsaken, was, so far as he could see, the worst of war crimes."


Daniel Rebiere, a character in Human Traces by Sebastian Faulks


A couple of weeks ago I completed Cycle 22 of the trial, and am preparing myself for my Cycle 23  visit to Houston - just chemo, no scans this time.  22 was good, the cancer slowly but slowly losing its purchase, getting a bit smaller with each passing month.  I've been blue and purposeless the last few weeks, however, and unable to explain it. Although I do have a motto now, "Cancer Free by 2-0-1-3." Go Team.


Its possible that I've been surrounded lately too much by people who view their own lives as "highly valuable and sacred" in a way that strikes me as, if not, intolerable, then plain irritating. Perhaps there is jealousy that I thought I had rid myself of, as I struggle to find purpose with my own altered life.  


The drug has put me in limbo, trapped in stone like the cherubs in Trogir, one foot in this life, one in the former. 


I want my old life back.

Remembering Barbara

Preparing (mentally) for traveling out to Houston for the start of Cycle 18 of the clinical trial. Haven't been able to sleep for a week, who knows why. B barking outside, H dashing out too, but by now has likely realized B is just tilting at another windmill, creating another false alarm, and I'm sure wishes she were back inside in her fleece bed. She is a loyal sidekick, but also intelligent. I suspect that there are only so many more "Wolf"s she will respond to before she will quit investigating at all.

Here she is, right on cue. B continues to patrol, to defend and protect.

The last cycle was relatively brutal - in that I felt very bad for several days afterward - mostly tired tired tired with some nausea for good measure. The fact that I had obligations on the Friday and Saturday following my return probably didn't help. The fact that the Saturday obligations were a memorial service and dinner for a grad school friend who had passed away from ovarian cancer was mentally and emotionally exhausting. Her memorial service was held at the Botanical Garden, and was a thoughtful and loving tribute to a woman I knew mostly through our cancer connection, and wished afterwards, that I had taken the time to get know her much better. She was a selfless and giving person, from the old school of thank you notes, birthday cards, and right and wrong. She had a no-nonsense way about her - probably from decades of lecturing to university freshman, many of whom were undoubtedly full of themselves, centers of the universe all. She had developed such a strong sense of herself that I think I found intimidating - which likely got in the way of my trying to get to know her better - insecurities on my part, that I wouldn't measure up. Silly in retrospect.

With her gone, I don't think I know anyone else with cancer. By that, I mean, pre-diagnosis friends and/or acquaintances, who were struck, like myself, at around the same time, all stunned at what had been bestowed upon us. All three are gone, now, and its just me, wondering what's around the next bend.

 

Cancer Isn't for Sissies

Regardless of the fact that I have found peace with my lot, living with cancer is a huge pain in the ass. I find myself saying "Cancer Isn't for Sissies" a lot, and I mean it every time.  I think I probably text it more than I say it, but I hardly think that matters. 

Here's a good example.  I am currently in week 2 of Cycle 16 of a Phase I Clinical Trial - full on guinea pig mode, in other words.    So, I've just passed my one-year anniversary taking a drug that noone knows much about, including whether or not it can help my disease, or what its really doing to the rest of my body.  This is my first Phase I clinical trial, and so far the results are better than anything we've tried in the previous 4 years. I have had a couple of god-awful surgeries that were also successful in that they have reduced my tumor load so that I have a better change of outwitting what's left, but that's another story.  The point is that the guinea pig is doing pretty good right now, traveling out to Houston every 3 weeks, give or take, to see what's what.

The drug, called AZD6244, does appear to have stunned my cancer, making it difficult for it to further its attack on me.  I call it the Shock and Awe drug.  Not only is it shocking my cancer, it is shocking my tissues, who really haven't figured out a way to deal with it either.  My tissues are apparently afraid to let go of something they feel may be saving their life.  So they are retaining all of the fluid that the drugs are helping to generate - over the course of the year, this has amounted to approximately 40 pounds of fluid, which my tissues like, but none of the rest of me does - not my heart, my kidneys, my self-image,  my joints, my poor clothes, my poor husband, noone wants that fluid around.

I will admit that my wonder dog doesn't mind it - she is still just as happy to see me when she gets up, and just as happy to race down the driveway to the mailbox - just as happy to be right next to wherever I am - its safe to say that she could give a rat's ass if I'm walking around with 40 pounds of extra fluid. She still sees me as me.

The rest of us, though, would like it to evaporate, to sweat itself out, and/or otherwise get discharged in the traditional way.  There are days I feel like I could just stick a pin in my arm, and it would be like popping a water balloon.  My tissues are so selfish with "their" precious, that they just hold onto it.  They won't let it seep upward through my pores so my skin remains very dry and itchy, my nasal passages remain very dry and bloody, and my fingertips and heels are constantly cracked, making it hurt to do many of the things you do with your hands and your feet.

Water water everywhere and not a drop that's of any use whatsoever to me.  Except of course if those fluids are in fact drowning the cancer, contributing to its confusion, its inability to fight back.  I suppose then I become a little more inclined not to hate those 40 lbs, but when you've been an athlete your whole entire life, and it stands in the way of who you used to be, as a constant reminder than your life is changed forevermore, and you may never be able to complete a triathlon again - well, its just one more thing that's different about you. One more piece of you that made you who you were - a triathlete - that might not be coming back.

Cancer is really not for sissies.  

This I Believe

• I believe in a creative life force, a spirit or spirits, the Tao or Great Mother, God or gods - something that binds all life together.
• I believe this energy or force binds us with those who came before and those who are here now.
• I believe in a wisdom tradition where select individuals are capable of accessing our collective memory and retrieving the great truths.  I believe these individuals have a responsibility to communicate them to the rest of us.
• I believe that messages necessary for survival are hard-wired into our genes and have been passed down since life began.
• I believe evidence for the hardwiring can be found in butterflies, turtles, whales, and penguins - species who know how to take care of themselves from the moment they are born - who migrate because they know they have to, even if they don't know why - who know to head down the sandy beach as soon as they are hatched, or head upstream, regardless of the fact that its more difficult.
• I believe that natural disasters and human tragedies are an inevitable part of life - that scientific conditions or random events create conditions under which tragedies arise or develop.  Any meaning to be derived from these events is a function of our human nature -  trying to understand why.
• Natural disasters and even smaller human tragedies allow for the emergence of hero figures - natural leaders - who find the power to change the way things are, and make them better.
• I believe in the power of science and scientific inquiry which provides us with greater understanding of life and the world around us.  I believe in the Big Bang and evolution.
• I believe in the power of art, and the storytelling tradition, which allows the great truths to be communicated again and again.
• I believe in the power of language and also the power of listening.
• I believe in wonder and awe and miracles and that there are things that never will be explained, no matter how hard we try and how much we come to know.
• I believe art originated before language and that prehistoric man used art to communicate before he began naming things.  I also believe that we will never know this for sure.
• I believe I will survive cancer, but if I don't, that I will stay alive in the hearts and minds of those whom I've loved and those who have loved me.
• I believe my life, as unremarkable as it has been, has had meaning - and that my death will also have meaning - that I will be able to watch over my loved ones, and that they will know this.
• I believe in the wisdom of Lao-Tzu that "if you aren't afraid of dying, there is nothing you can't achieve."
• I believe in the wisdom of William Faulkner that "memory believes before knowing remembers."
• I believe in living each day as if it were a bonus.
• I believe I will survive cancer.

This I believe. 

surviving cancer 101: lesson 7

74


If you realize that all things change,
there is nothing you will try to hold on to.
If you aren't afraid of dying,
there is nothing you can't achieve.

Trying to control the future
is like trying to take the master carpenter's place.
When you handle the master carpenter's tools,
chances are that you'll cut your hand.


from the Tao de Ching by Lao-Tzu, Stephen Mitchell translation

7.  The importance of letting go.


The end of the surviving cancer series, which speaks for itself. 


Make opportunities to get out and live like there's no tomorrow. Take your wonder dog with you.

surviving cancer 101: lesson 6

29


There is a time for being ahead,
a time for being behind;
a time for being in motion,
a time for being at rest;
a time for being vigorous,
a time for being exhausted;
a time for being safe,
a time for being in danger.

The Master sees things as they are,
without trying to control them.
She lets them go their own way,
and resides at the center of the circle.


from the Tao de Ching by Lao-Tzu, Stephen Mitchell translation


6. know your options.


If "no" is your only option, open your ears and listen for others.

I was told 3 years ago, I had one "option", a pill that had little chance of working - other than to possibly control metastases to the brain. At the time, my cancer was like a teenager, running wild and this was the only option that my current oncologist had available to him.  We decided the time for us was to be in motion - the onus was on us to find out where our other options were. 

Our research led us to one of the premiere cancer research and treatment facilities in the world, M.D. Anderson. They had lots of options for me then, and still do. They may not ultimately be able to cure me but I am certain they will exhaust every possibility.  They have given me much more time than I would otherwise have had, they’ve given doctors, researchers, pharmaceutical companies, everyone more time to find the solution that will fix me and others.

Having options means not giving up. Not letting the crab grab all my energy and get stronger while I weaken.  A doctor who has options for me and is unwilling to ever say that's it, no more options, means that I can relax.  There is still time for being in motion, being at rest, being exhausted, and so on - they've given me that luxury.

I know I can't control the outcome, but I have found my peace in letting things take their course, knowing that when one treatment avenue closes, my doctor has more options available.  The windshield's big, rear view mirror small. 

surviving cancer 101: lesson 5

35

She who is centered in the Tao
can go where she wishes, without danger.
She perceives the universal harmony,
even amid great pain,
because she has found peace in her heart.

excerpted from the Tao te Ching, Stephen Mitchell translation

5.  Open your heart. 

Regardless of whether or not you're a believer, never ever turn down a prayer, a hug, an arm squeeze, a donut, any gesture of compassion, empathy, or love from anyone, including, and perhaps especially, perfect strangers.  

I’ve been bald twice and have otherwise looked pretty sick for 4-ish years (until a few months ago).  During this time, I've struck up conversations with countless strangers - at cancer centers, airports, the grocery store, wherever.  I've seen more good in people in the past 4 years than I have in the 43 that preceded it.  It might be because I've looked so vulnerable, and that does seem to bring out the best in a lot of people.  

An overwhelming number of people I've met want to add to me to their prayer list.  I'm not a church-goer, and probably don't have the same beliefs as many of these people, but this doesn't matter to me - or apparently to them - in the least.  I just say thank you, go for it.  I don’t care what religion anyone is - if someone wants to pray for me, send me good chi, hold a good thought, say a Hail Mary, whatever - I accept it all, and I'm grateful for it. I will take whatever people offer, whatever they can spare. 

Our visits to church are basically for weddings and funerals.  This summer, though, we were in France, on a canoeing trip, and I asked my husband, who could probably best be described as a fallen Catholic, to light a candle for me at Notre Dame.  Before you knew it, we were lighting candles at small churches all over France.  Lighting those candles gave me a sense that anything could happen - that it might work.  It was the same feeling that making the connections with strangers has given me - a feeling of being part of something much larger than myself, a feeling of grace.  

I believe that miracles can happen every day, and the more I open myself to that feeling, the better I feel.