Friday, March 29, 2013

Cancer in every nook and cranny of my life

There is an idea that I really struggle to express properly about cancer and this whole process.  The thing that I have found in this journey, is that time is somehow compressed, in terms of figuring out how you feel about things.  The experience distills many vague notions that you may have thought or felt.  In essence, it tests every theory that you have, in a very short period of time.

Because with cancer you need to figure things out real quick: how you define family and community, how comfortable you are with risk, what you think about God…the list goes on and on.  And you have very little time to figure it out, because people come out of the woodwork to offer help (if you are blessed like we have been), you are making decisions about your health that define your comfort with risk, and God is either going to make you very angry, or comfort you.  (And perhaps a bit of both) Regardless of your reaction, you might be having some face time with God, sooner, rather than later, which makes these thoughts a very practical matter. 
I really think that this is a process of distilling what is already there.  And cancer forces us to speak of those thoughts, not perhaps with our words and voices, but by virtue of every decision that we make.  I often say that you vote with your feet, by what you do.  This process has not changed my ideas, so much as expressed them and clarified them.

How do I define family?
I have always had very liberal ideas about how a family is defined.  Some define it in terms of common blood, which is perfectly reasonable and acceptable.  The phrase that “Blood is thicker than water,” is what truly matters to some people.  (I have never considered family in these terms myself, except when talking to my geneticist.)  Under normal circumstances, and over time, as many small decisions are made, I have come to learn that some people, even some in my own extended family, define it in this way, which is perfectly understandable.

My children have been blessed with aunts and uncles by blood and marriage, but there has been room in our hearts and in our family for others.   ‘Uncle Pete’ has been devoted and doting, ever since my children were born.  Their Filipino Uncle who never fails to mark a birthday, even from New Mexico, is a small example, an expression if you will, of how we define family in fairly open terms.   Cancer has distilled that expression, and we now have great affection for many that are not kin, but considered within these walls in familial terms.  Our family is quite large these days.
But cancer did not suddenly cause us to consider outsiders to be family, only amplify what was already there.  Some with cancer close ranks, pulling blood relatives in even closer, which is simply an example of this journey forcing them to express how they define family.  It doesn’t matter how you feel about these things, but cancer causes you to say it out loud in a way, because others can see it.  You are forced to show how you feel, because there is no hiding from it.

How comfortable am I with risk?

Normally, we have a million small tests of our comfort with risk.  Occasionally speeding, going for it, even though you are out of birth control pills, racing to the bank to deposit a check in order to cover the one you just wrote…a million small shaves that, with varying degrees of consequences, define our comfort with risk.  And with the luxury of amending our thoughts, ideas, and actions over time, shaping and reassessing as we go along.
Cancer is like putting money down on the table in Vegas.  You are strapped into a chair at a high stakes table, and often you find that you have to push all your chips to the center.  All In.

My sister went skydiving a number of years ago, and asked me if I would go.  I believe that my answer verbatim was “The day after never.”   I am generally pretty uncomfortable with risk.  I would play penny slots in Vegas, given a choice.
Now with cancer, there are no clear cut answers.  The doctors present you with options, and to use Dr. Getty’s phrase, “You aren’t going to like any of them.”  They seldom say anything with certainty.  I remember that in contemplating the surgical options for Brent, Dr. Getty had said that aside from leaving the tumor there, there were no wrong answers. (Amputate, flail hip or reconstruction)  It was a really a lifestyle choice…  How comfortable are you with risk?

It was all risky.  It was all bad.   But we had to choose.  And this would boldly say how comfortable we are with risk.  What did we think?  What the heck did he mean by “lifestyle choice?” (There is a whole ‘nuther topic on knowing what they mean, long after the fact---you suddenly understand it, when you actually face some circumstance and think “Ahh, this is what they meant!”)
Now this would be getting a bit ahead of myself, and venturing into what I think about God, but had I truly known, and fully understood the risks (not in any way suggesting that possibilities weren’t adequately explained to me, just that you cannot really ‘get it’ until you are there), I am fairly certain that I would lack the courage to do Brent’s surgery in New York.  And God, I believe, protected me in my blindness.  I do not in any way regret the decision to go, and am exceptionally grateful to Dr. Healey, even with the difficulties. But I know that if I had a glimpse of the future, particularly of the delay in chemo, the risk would have been far too great for me. 

Because mostly, I am a coward.  I am careful and deliberate.  I do not invest aggressively, needing big retirement.  I am generally content with what I have.  And I felt that having Brent, in whatever form, was enough.  And yes, in case there is any doubt, I was scared of making the wrong decision for him.  But, in retrospect, there could have been delays with any form of surgery, and in all honesty, he could still relapse regardless of what we did, or might do (May that never be the case, please)

Cancer forces you to make large cuts, rather than small shaves, if we return to the sculpture analogy.  The form of who you are, and what you are all about comes out, pretty boldly.  I have never been bold before.  In anything.

What do you think about God?

Now, this is a touchy subject for many people. I have generally been pretty private about my feelings about God. My ideas have changed little over the years, but this experience has distilled my private musings.

In full disclosure:  We are not members of a church.  When asked, I say we are generally Protestant.  And while this may strike many as an ill defined theological position, it illustrates neither apathy nor atheism, despite how it might sound.  Cancer has distilled this notion in me as well.
I cannot look back over my life and fail to see a purpose.  I feel that I have been blessed from the very beginning. (How is it that I wasn’t born of a prostitute in a third world country?) 
I have always wanted my children to see God, one of love and beauty, wherever they are.  And should they feel closest to love in a Catholic church, listening to mass in Latin, finding beauty and comfort in those traditions, I want them to feel free to go there.  Should they feel closest to God in their garden, in awe of the details of nature,  then that is where they should be.  I think that the message of the various religions, the names that we have for God, well, they are as individual as we are. 

As much as we define ourselves through our actions, we are also expressing our feelings about God in a way. 
We say something about ourselves as we parent, for example. There are moms who need to be ultra-prepared, reading loads of books and taking birthing classes.  I have a friend, who planned her child’s c-section, keeping in mind the cutoff date for kindergarden registration.  Lots of people have names selected ahead of time.  Some parents follow a very strict schedule and routine.  Knowingly or unknowingly, this is all an expression of who they are, which is a bit different than me.
I was very comfortable not knowing the sex of my children, and while we did enroll in Lamaze, it was a one day crash course.  We had no names selected, which caused us much teasing (You had to have seen this coming—you had 9 months!)  I enjoyed imagining what my children would be like, and I have often said that in the end, when I was so big that I could not get out of my own way, so uncomfortable that I could not sleep, and was simply just done being pregnant, these daydreams helped to get me though.

I suppose the analogy with God is no different.  All mothers are aware that that they are pregnant. They feel the movement of the baby, and know that at some point they will meet them face to face. (Some have a different awareness, and adopt…just knowing there is a child out there somewhere for them)  Some need to read, to study, to prepare.  And some are comfortable with the mystery.  I have always said to friends as they embark on a new phase of life, that whatever picture you have in your mind about parenthood, or marriage, well, it will be wonderful far beyond that, but definitely not the picture that you have in your head (which is the only thing you can say with certainty), no matter how much you imagine, plan or read.  (Not to diminish the value of study and preparation) 
I am equally comfortable with the notion that God is a mystery.  I feel that presence, but do not have to have all of the answers. I recognize that there are as many ways to express our feelings about God, as there are ways to become a mother and to parent a child.  The substance of that expression is more important to me than that form (sprinkle in baptism, dunk, don’t baptize at all…to me it doesn’t matter so much as the recognition of that bigger purpose, and living a life of love)  
I have respect for the various forms of that expression: the ideas of the Jehovah’s witness that comes to my door, the long tradition of the Mass, the spontaneity of the Baptist's song, the thoughtful study of the Talmud…the manner and tradition is rich and varied.  In my mind, they are all beautiful.
How has cancer distilled this notion about the mystery of God and my comfort with it?  Well, first, we know that there are all sorts of people praying for our family, and we welcome the prayers, however you form them and whatever your tradition that brings you comfort and love.  
Second, I strongly feel that this is where we are supposed to be, and that there is purpose in this journey.  I have to believe that there is reason, or a plan, because before I was even born, the eggs that would become Brent and Lauren carried this mutation of the cancer gene.  So, it could be argued that I was in fact born to be the mom of a cancer patient.  I do not choose to see this as a curse, but a blessing (because, I think my kids are pretty awesome, questionable genetics aside, although I am hardly impartial) and try to help others through our experience.  This helps direct me to my purpose.
I was raised in a home where the words “I don’t know” were seldom uttered.  There was a strong need to have answers, and to be right.  During adulthood, I have worked (and needed to work) on the notion that there are often no single set of right answers.  If ever there was a journey to affirm this concept, we are living it.  No one has the answers for us, doctors included.  But everyone can show compassion.  And everyone can show love.  That is what I am left with, and what I think matters in the end, the love.  I don’t know everything about God, who is ultimately going to surprise the hell out of us all, I suspect.  But I do think that he is all about love.
If I am wrong, and there is no God, is living a life full of love such a bad way to spend it?  Compassion, connection and love?  For me, there is no other way to be.  Some find God in the security of firm knowledge that their church provides, which I love to hear about. But me, I find God in the mystery.  And ultimately, I believe that God is where you find comfort and love.
I mentioned that I am fairly uncomfortable with risk.  I have had all these ideas in my head for most of my adult life.  Our cancer experience has distilled these ideas, and simultaneously provided me an avenue by which to express them, with the potential of helping others.  I would never have thought to do this, had we not begun a caring bridge, and I became more comfortable opening myself, our family and our journey to others. 
But I think that this is what I am supposed to be doing.  Writing it down, and sharing it, well, that is the bold cut, rather than the small shaves, that cancer has brought to me.  With cancer, there is no hiding who you are.

Wednesday, March 27, 2013

Find your inspiration wherever you can

I have found inspiration in odd places.  I have stumbled upon it.  I have sought it out.  I firmly believe that you should use whatever gets you through.

When Lauren was diagnosed with cancer as a baby, our lives were turned upside down in a dozen different ways. One example, Dan worked in private practice and was very worried about the stability of his firm, and questioned at one point if he would be laid off.  I worried about his firm ‘borrowing’ our health insurance premiums as they had our 401K contributions.  It was like that.  The writing on the wall was there to see, if you had eyes at all.  We absolutely could not afford to lose insurance.

So, while I had always planned on going back to work when the kids went to school, it seemed like finding a ‘J-O-B’ with health benefits was becoming a more of an immediate priority than previously.  Yup, cancer certainly changes things.

The problem for me was that I had let my teaching certificate lapse when we began our family, thinking that it would be many years before I would be going back.  I needed to take 3 graduate classes in order to re-up my teaching license.  So, I enrolled at Cleveland State (incidentally,my 6th institution of higher education at this point) and signed up for a history course on the Renaissance.  I thought that I would take these three classes, one at a time, and go back to teaching high school history.  It was an easy and obvious choice.  There was nothing easy nor obvious at the time, so I moved forward with my education.

I was nervous, going back to school after taking so much time off.  I wondered if I could do the work and juggle three small children. Dan was an enormous help, needless to say.  But, I also worried if I could make the jump to a higher level of curriculum, if I had the chops for graduate school.

The focus of this course was the Renaissance, the philosophical, sociological and artistic transition from the Middle Ages to the humanism that characterized the renaissance. Once I began, I found a billion things that I loved about this class.   I loved being challenged; I loved the ideas, the perspective, the research. I was a very geeky pig in some pretty deep mud. 

And this learning was a much welcomed distraction from the cancer research that I had been previously doing on the Internet.

So, my professor offered very liberal parameters with regard to topic selection for the research project. Political changes, advances in art, changing perspectives in philosophy, the list of interesting individuals from this era is endless:  Machiavelli, Gutenberg, Michelangelo, Shakespeare, Galileo, the Medici …there was really no limit.  I could pick anything.

I picked The Plague.

Yes, the Black Death, which in 1347 wiped out somewhere between a third to half of the population of Europe.  At the time, I couldn’t fathom why I gravitated to this topic.  I do not believe that it was a morbid preoccupation with Death, although the piles and piles of books I read on the subject held mind numbing mortality statistics and vivid descriptions of the progression of the disease.  

I selected an Italian poet, Petrarch, who had the misfortune of witnessing the disaster, but managed to survive the initial onslaught and wrote quite a bit about it.  I read many of his poems and letters.  The interesting thing (well, for me there were many, but I digress) was that the plague would return again and again.  And as a society, the people of Europe found beauty, and celebrated their lives here on earth, making art, poetry, architecture, music …so much that is still celebrated and enjoyed today.  I found this inspiring, and very surprising, given the tendency at that time for things to go so horribly here on earth.  And, I cannot exaggerate how horrible it was.  Not ‘Monty Python’ kind horrible, but the ‘end of days, bring in the horsemen of the apocalypse’ kind of horrible.

So, I read a lot about this pestilence that visited and revisited Europe, and I studied about how individuals coped and the ways that as a society, they not only survived, but thrived.  And the plague kept coming back.  I was in awe of how they lived with that uncertainty and fear.  I could go on and on about how remarkable this seemed to me. I wrote a pretty lengthy paper on it, but could easily write an entire book, with the examples I came across. (Don’t worry.  I will restrain myself for our purposes here.) 

It was so empowering, because these people, with far greater challenges chose to focus on beauty and love and to value the life of the individual, when the sea of death would wash over them like a tsunami every generation or so.  It had such an impact on me that I struggle to express it, and I am something of a word girl. (Also, it is hard to get most people engaged in conversations about the bubonic plague; however, I have some pretty patient girlfriends who have been incredible listeners over the years and have indulged me, but maybe it was just the tall beers at BW3 after volleyball)

The parallels to Lauren’s disease and the fear I harbored about its return for the first few years, well, this might be obvious to most, but it was a revelation to me by the end of this course.  My professor asked me if I was pre-med when I went in to speak with her about my work (which surprised and confused me at the time, but makes me laugh from my current perspective), and the conversations that followed made the tuition worthwhile, even though I did not continue to get my masters degree.  I have since said that it was much cheaper than therapy. 

I continue to read pretty obscure things about this era, but return always to the notion that they chose to see beauty, despite the ugliness all around them. 

We have a choice. 

I have a choice. 

And while so much of this is beyond my control, my response, my choice, my focus, well that is firmly within my control.  And this, I believe says more about us, than the things that happen to us.


When we were in the middle of chemo, facing Brent’s rather bleak surgical options, and later when we were stuck in New York, trying desperately to get back to chemo, I worried an awful lot. The future was so uncertain.  In life, you cannot flip to the back of the book, unfortunately and read the last chapter to find out if the hero makes it to a happily ever after.  But when I could not sleep (which was often),I would read… Churchill.  I do recognize that this is odd.

In looking at history, and reading history, it is difficult sometimes to remember that the outcome was not established.  Hitler might have won, the South might have triumphed and we could still be under the tutelage of England.  I have long been drawn to learning about men who acted, despite great peril, in the face of adversity and uncertainty (Washington was in fact committing treason in his quest for liberty, Lincoln was looking for a way to heal a country warring with itself, and Churchill tried to protect the world from a relentless madman, practically alone at one point)

Draw any parallels that you like (I see all kinds of allegory here with cancer, but then again, I generally do).   But the fact remains that these men did not know how it was all going to work out.  We have to remember that Washington could just as easily have become Guy Fawkes, rather than the father of our country… our divided country, where we eventually are forced to speak German.  Just saying. 

So, through the long sleepless nights at Sloan Kettering, I would read Churchill’s speeches, and learn about his struggles.  Especially his response to the very bleak time when he was alone on the world stage, France defeated, enduring the punishing Battle of Britain, before the US entered the war, while Hitler’s bombs rained down on England every single day. 

I was alone in NYC, outcome uncertain and every day was a setback.  But Churchill’s strength, his passion, and courage were helpful to me. I found a friend in an odd way.

Ok, I know that it sounds like I enjoy talking to and hanging out with old dead guys, but in all fairness, I lead with, ‘whatever gets you through.’  Petrarch and Churchill seem like unlikely companions in the Big Apple, but they helped carry me, and I like to give credit where credit is due. 

Thank you, gentlemen.



Mosaicism: A picture says a thousand words

As I have talked to many people, I have struggled to explain my research question and find a device that would appropriately illustrate the problem that I have.  Several months ago, I even google searched images of mosaics and thought that the commonly seen murals at Disney World might help, but they weren’t quite right.  So I just tried to explain it using more words…to varying degrees of failure.

The kids had given me a daily calendar in 2009, one that had a different piece of artwork for each day.  I had gathered up some of my favorites at the end of the year and I keep the stack of them on my desk, changing them periodically (I really like art).   Upon my last shuffle of the deck, I stumbled upon a Seurat, Sunday Afternoon on the Island of La Grande Jatte, that I think is common enough to be familiar to most  (It was in Ferris Bueller’s Day Off) and can help to explain my genetic issue.

Most people, genetically speaking, would be like a living room wall….painted all one color at the P53.  You are likely red, if we choose that to represent a normal cancer defense.  Lauren and Brent, with the genetic mutation in every cell of their body, are solid blue (So we start watching for cancer everywhere…hence full body MRI).  Me?  Well that is causing some head scratching, because it is unclear.  With a mosaicism, I am kind of like this picture.

So, the painting in question uses the technique of pointillism, whereby bits of individual colors are daubed next to each other, in order to make a full picture.  Your eye, from a distance only sees a park scene from the 1800’s.  But upon closer inspection, you can an infinite number of dots of various colors.  If you consider the piece as a whole, looking for the color blue, it is obvious that there are a lot of blue dots in the lake.  But what might not be obvious, is that there are also blue dots in the brown monkey and in even in the red umbrella (or should I say ‘parasol’ was to keep the sun off because they had a healthy respect back then for the damage of UV rays, cosmetically at least)  
If blue represents the mutation that causes an increased cancer risk in a particular cell, we know that there is a fair amount of it in my ovaries (because I had Brent and Lauren). We are trying to understand if the only blue in my body is in my ovaries (the lake), or if there is some blue in the monkey and red umbrella (skin, kidneys, liver, pancreas…) as well. 

Because if the only ‘blue’ we find is in my ovaries, I do not need to do any surveillance elsewhere, which is expensive, not at all pleasant, and pretty time consuming.  But, if I do have an increased risk generally speaking, I would certainly want to do the scans, because we have seen the benefit of early detection first hand.

So, how do we establish the location of blue dots?  You have to get up close, genetically close, which means taking samples.  So, as tissue becomes available (like those skin biopsies and the uterine biopsy from December) I am trying to forward them to my geneticist.  I had a breast lump removed a few years ago (benign) which we would like to pull out of deep freeze, and look for ‘blue’ in the cells.

And in the meantime, we have to keep a pretty close eye on the lake.  So, in December, I went to my OB/GYN to get a look at my ovaries.  All cancers are different.  I know this.  But, as my doctor explained to me, ovarian cancer is particularly difficult to screen in order to find it early, and very difficult to treat once you find it.  He advised me to consider a hysterectomy. 

Oh, and this was before he found a sketchy looking uterus with the ultrasound that precipitated that biopsy.  So, I was advised that in addition to some other medical reasons to have my ovaries out, I have an elevated, if ambiguous risk of a difficult-to-detect and horrible-to-treat cancer.  Think on it. Okey- dokey.
No wonder I had a tough time feeling the Christmas cheer.

In the meantime, Brent had another surgery, and I had two questionable skin biopsies.  I sure would like to know if there is any ‘blue’ in those monkeys. (Hence my correspondence with the IRB)  What I do know is that we are busy folk here.  I don’t want this to come across in the wrong way, but I simply do not have time to get ovarian cancer (not that anyone should block that off on their calendar)  I cannot imagine doing what we have done over the past year and a half, with a health issue of my own.

So, to the extent that I might have been a little shocked and very surprised by the conversation I had with my OB in December, I have moved past it. In fact, I came in to see him this week with a plan, and a proposal that might have surprised him a little bit. 
I am committed to oophorectomy (ovaries out) and am asking him to not necessarily use a scope, because I want a general survey of my abdomen….multiple biopsies collected of the various organs there (while he is in the neighborhood) , so that my geneticist might look for ‘blue’ while my OB drains the lake, if you will.  This was the petition that I personally made to the IRB, because on paper this sounds very much like the request of a mad scientist, completely devoid of ethics.  But, for whatever it is worth, this was my idea.  Dr. Mitchell, my geneticist, never asked me to do this.

Aside from the increased short term risk of general abdominal surgery, there is an increased risk of osteoporosis if I remove my ovaries, which, as I pointed out, implies old age.  I am quite willing to live with that (forgive the snark). And with the answers that this procedure can provide, we can begin to know how I should screen.  Science will gain something in the process, I am sure, but between you and me, that is merely a peripheral bonus.   I am being ruthlessly practical and completely self serving about this.
There will be a lot of time and effort required in order to get it done, working through insurance, the IRB, negotiating with the hospital etc...  But I have seldom been so certain of a decision and a direction.  It is a matter of how to accomplish it, rather than if I should do it.

And there is great comfort in knowing what you should do, even if it isn’t all that pleasant.  I find indecision far more disagreeable.  But maybe you should talk to me about this after I have the surgery, and see if I maintain this opinion.