The latest (or last) surgery

We wait, with coffee.

We have returned to New York, to do what we are hoping is Brent's last surgery.  We are grateful for our blessings, which I count like a rosary.  We have no oncology.  We are all together as a family. We have no oncology.  With Dr. Healey's help, Brent will be able to walk.  We have no oncology.  I cannot seem to repeat that one enough times.  

It has been a long hard slog these past two years.  But I feel, more than hope, that our world is going to open up, and that our kids will only visit the hospital once every three months for scans.  I feel, more than wish, that our family might be having a bit of a breather.  Often, as we approached such a point or potential before, I longed for such normalcy, and craved for time at home, but I didn't feel that it would happen, quite the way that I do now.  I have a calm about things, that I have not had in a long time.  I do not feel that I have to fight my circumstances.  I do not like to fight, incidentally, being more of a 'peace and love' kind of girl.

My alarm went off at 430, which was not nearly long enough after Vanco was finished.  Once I showered, I woke Brent so that he could take his second Hibaclens shower. As we left, I woke Alex to bolt the door behind us so that if Olivia should wake up, she would not wander, because I knew that Alex was going immediately back to sleep.  I am grateful that he is nearly 16 and can help look after the girls while we are at the hospital this morning.  Such a blessing!  

It was already hot and very humid as I pushed Brent the five blocks to Sloan Kettering.  Dan, coming from a hotel, would meet us there.  

  

First thing this morning, we bumped into our pre-op nurse in the hallway, who remembered Brent from his first surgery, and even came up with his name after a year and a half.  The nurses here are amazing, if I have neglected to mention it. The oncology nurses at Rainbow Babies and Children's Hospitals are pretty awesome too, but we have not really seen them lately.  This is another blessing to count, duly noted.

We have come to the point that even here at MSKCC, we are considered veterans. They approach us a bit differently, much in the way that you are treated differently when having your second child. You will certainly have questions, but every last detail does not need to be explained.  We are not the nervous first time parents.  Brent is not the nervous first time surgical patient.  While we would prefer not to be doing this, at least we are familiar with the process, which is at least a known quantity among so many unknowns.  

I was interrupted here by a woman who struck up a friendly conversation with me. (A few weeks ago, Brent pointed out that this happens all of the time, strangers speaking to me out of the blue..and I have begun to notice that he was right)  She is alone, waiting for her step father to be done with surgery.  She is anxious, I think, in a way that we are not.  (I would return to the part of my mantra that says that we do not have any cancer to deal with right now, and we have comfort in the familiar process)  But cancer makes everyone here family in a way, and this 'cousin,'  if you will, needed reassurance, or maybe just someone with whom to share her hopes and fears, as we all do at such times.  Her step father happens to be part of a clinical study, and she shared with Dan and me, the promising ideas that are being explored here. It is exciting to learn about the things that they are able to do and are learning to do. 

We were called in to see Dr. Healey, who had good things to report.  I had shockingly few questions, thinking back on it.  We talked about the distant future for Brent.  There were not, I noticed, very many responses of "we will see," an oft given answer which had been the source of much frustration for me over the past year and a half as I tried to peer into the future and sort out the plan.  So many things had hinged upon the success of the very next step, that trying to see the likely eventuality and the road between here and there was futile.  There were too many variables, .  

I have finally become comfortable being very, very present, which might have been the point of this exercise, if I were to be so bold and speculate on one of God's purposes.   And so now, we have begun looking far ahead, lest I become too comfortable. Yes, I believe that God also has a sense of humor. 

In the PACU, we were visited by nurses of surgeries gone by, which was nice.  Brent woke to declare from a narcotic haze that "This is going to be the best admission ever!"  evidenced by the fact that he only had one IV that was soon pulled in recovery, and no catheter.  What more could a 13 year old wish for?  

We found out, when we eventually made it to the floor and he scored a single room...and furthermore, learned that age restrictions that would have made it difficult to get Olivia (at 5) in for a visit, have been lifted.  It doesn't get better than this.  Brent is right, this is going to be the best admission ever.

And, I am hoping, the last.

  

A week full of thoughts of surgery and support

We find ourselves quite unexpectedly at home.  Brent's first surgery went so surprisingly well that they decided that he might spend the next couple of weeks in Ohio, rather than the Big Apple.  There is an abundance of blessings to be found in this statement.  

I am responsible for giving him IV antibiotic three times a day (with a 2 hour drip for each dose) until we return for his next surgery.  I am praying that this antibiotic regimen clears the infection.  None of his cultures grew anything, despite the graft being obviously infected, so we are hoping that this measure of going broad in spectrum, as well as deep in coverage (6 weeks) will wipe it out.  Whatever 'it' is, which is unknowable at this point.

I finally sorted out things with MSKCC, and our plan it to return to NYC in a bit over 2 weeks for the definitive surgery.  It is unclear at this point, exactly what form that will take, but the surprises have been good for the past month.  We are praying that they continue to be good.

As I waited for the appropriate time to hook Brent up to his IV (or unhook him...I forget which) on Tuesday night, I checked in with my LFS friends online.  The Internet is a blessing, especially for support in something like Li-Fraumeni.  With an estimated total of 400 people in the US with this genetic disorder, I would not have likely had the opportunity to meet anyone like us, with the same challenges and similar worries.  We would be essentially alone.

I remember when we initially learned about LFS, back when Lauren was first sick, some 8 years ago now, I had read about families with LFS in medical journals, but those were written for clinical use. There are no names, of course, and details about the patients are limited to age, sex, diagnosis and outcome.  The stories of these families are devastating from a medical perspective.  It was a very tough read, with little encouragement to be found, especially with the worry that we might be just such a family.  There was no sense of warmth, of hope, of connection.  It was written for a researcher, not a patient... or a parent.

When we discovered nearly two years ago that we in fact had the p53 mutation, initially, I went back to reading articles in medical journals, when I had the time. Fortunately, (??! ...that doesn't seem quite right!) I was pretty busy just helping Brent through chemo and then surgery...and follow up chemo, dealing with Lauren's brain tumor (which by comparison, seems like an acute issue)  and generally trying to keep the wheels from falling off.  I didn't have much time to seek further information or support...or offer it.

The omnipresence of Facebook and social media has been something that I have been very slow to embrace.  I am not sure why some folks find it necessary to share photos of their lunch...when it is utterly mundane fare from Taco Bell. But, it is not all bad.  In the last 6 months I have stumbled into a private support group of similar "mutants" as we refer to ourselves.  And consequently, this rather Amish girl has become grateful to Mark Zuckerburg, for indirectly making possible these connections with fellow LFS patients and, by extension, this support.  

Talk among my LFS friends on this particular evening centered on the various reconstruction techniques and options after a mastectomy, with much advice being offered.  I must confess that the technical talk is all a bit beyond me, having zero experience with breast cancer, and in all hope, I should like to keep it that way.  But several things struck me.  First, should I ever find myself in Alabama, for example, I absolutely know who I would stop and have a drink with, knowing that all of my cancer and genetic jokes would be appreciated.  These ladies have a wicked sense of humor.

Second, if I found myself in California, I know who I would rely on for advice on hospitals or doctors. This group has a wealth of information and medical experience (so wish that were not the case). But, they are willing to share their personal trials in very generous ways, in order to help others find the solution that is right for them.  

 

Reconstruction, for example, while it might seem like an obvious choice if available, might not be right for some.  Or the timing might not work, given recovery requirements.  How it is achieved technically, if chosen, is varied as well...and makes a big difference.  These considerations can be sorted through, with folks who have a practical understanding of what it all means.  That sort of advice is invaluable.

With LFS, we have a host of considerations that others do not, and likely cannot fathom...in medical treatment, in family dynamics, in finances, insurance, life perspective...the ways that cancer invades your life is not so different from the way it can take over your body.  I really try to keep it in check (umm...as I blather on and on about it here).  I clearly have varying degrees of success with this. These ladies have similar understanding of this effort at balance, and I am grateful to them for their openness and honesty about all of the consequences.

Besides, in having them scattered across the world means that at 3 am, should I find myself awake and worried about something, someone is likely to be awake somewhere.  And support, understanding and reassurance is easier to reach for, when you know that you are not disturbing someone's sleep.  I have been glad on more than one occasion, that Hawaii has a 5 hour time difference.

I woke up Wednesday morning to hang Brent's antibiotic, thinking about a dear friend who was to have surgery that day.  I was hoping that she had clean margins and was praying for clear nodes. This was for her second episode of breast cancer, not relapse, but rather a different kind of breast cancer than her original, nearly 10 years ago.  Double primary...it makes me want to swear. Kind of a lot.  And she does not have LFS, incidentally, not that it even matters.

My own surgery had been scheduled for Thursday (as if I could afford the time for such recovery) I cancelled it when we thought that we would be in NYC for the summer.  My ovaries will keep for a bit longer, and my geneticist currently has some other tissue to work with for a while. I hope to keep her busy this fall with more samples, and come up with some answers for what I should be doing. 

But presently, I am just very happy to be back home.  I am glad to be with my family, and to step away from the hospital scene, as much as is possible, with a fridge stocked with bags of Vancomycin rather than bottles of summer Corona.  I am trying to have normal conversations, about other peoples vacations, or children's activities, remodeling projects, because our take on these subjects is a bit different:  We vacation at Ronald McDonald House, my daughter is at oncology camp this week, and our remodeling project this summer is in my son's hip. 

I find that I make OR reservations more often than dinner reservations these days.

We will get closer to normal, but just not this summer, apparently.

Pediatric Cancer 101: Advice from the trenches

While, I know that most people do not prepare for this, and I am not thinking that there is a big market for a book titled “What to Expect When your Child has Cancer,” some might happen upon this early in diagnosis, or someone else, who has a bit more time to surf the net, might pass it along. I hope that it helps.  These are the lessons that I would offer at this point. I might offer “Advanced Pediatric Cancer” at a later date, but I really hope not.

1) Every cancer, and every cancer story, is different.

There are many roads that lead to the pediatric oncology floor (although most roads, fortunately, never go through that neck of the woods, with LFS, we actually take a freeway there.) How you got there is different from everyone else.  And once there, keep in mind that your child, her cancer, and how she responds to it, is unique.   This may be reassuring, or unsettling, depending upon what is going on around you. 

For example, while my son recovered from surgery for osteosarcoma at Memorial Sloan Kettering in NYC, he roomed with two different young men, both who were there for relapse osteosarcoma, which is a very tough road to be on.  We were there, just trying to heal from the surgery, in order to head back to Ohio and finish some punishing chemo.  The delay troubled me, and I feared that just like these young men, Brent’s cancer would metastasize.  Literally waking up every day to visions of my greatest worry was very difficult, and these were amazingly kind people.  But no matter; no one wants to peek behind that curtain, literally or figuratively, at that point in treatment.

I repeated to myself, like a rosary, “That is not Brent’s story.  The successes of osteosarcoma are not parading around this hospital for my emotional benefit.  They are out there, living their lives.  We will be as well.”  It helped some when I would remind myself of this.  But it was still incredibly hard.  

Easily, the most detested line in our home is “Everybody is different.  It all depends…”  Get used to that line, or some variation of it.  It has become a punch line for us at this point.  But, unfortunately, at a time when we most wanted something, anything, to count on, this was the best answer that the doctors could give.  And despite my great frustration, and the very palpable urge in the moment to shake the docs until their teeth rattled and an answer fell out, I do in fact appreciate their honesty.

Because everyone understands that the big questions like “Will this chemo work?” warrant this sort of response.  However, even seemingly simple questions, like “What side effects should we expect?”  “How long will his recovery take?” are truly unanswerable, as we soon learned.  Eventually, you begin to preface your questions with, “You likely cannot say but…”  When you start doing this without gritting your teeth and experiencing a rise in blood pressure, you know that you have become a hem/onc veteran.  Lesson one: learned.

2) Telling others

You will have to tell others.  In all likelihood, a lot of others.  We found Caringbridge to be an indispensible tool for communicating our journey with friends, family, and coworkers.  I do not work outside of the home, but Dan does, and as exhausting as it was being at the hospital, it was equally exhausting, emotionally speaking, for Dan to have to repeat the latest events over and over to his concerned coworkers.  Early on, I had many long, and repetitive conversations with understandably concerned friends, neighbors and family.

But, when I began to write online about what was going on, these conversations became shorter, less repetitive, and interestingly, we actually had more connection with people, many who might otherwise not have known our struggle.  With the most recent information available about how Brent was doing, the conversations would often start with a statement like  “I was glad to read that Brent enjoyed a good weekend home” or “I am sorry that you were in the ER again last night…”

There is fear, I believe, in asking about how things are going for someone in a health challenge, when you truly do not know.  So, this tool has been empowering for the asker, as well as for us.  Others know what kind of conversation that they are getting themselves into, and proceed accordingly.  And with the feedback we receive, we know that many people are praying for us, rooting for us, and traveling with us down this road.  This has been incredibly encouraging, given how long and bumpy the road has been.

When I initially had to tell people of our journey, it was a hard thing to hard to say.  Sometimes, the responses were hard to hear.  And once you child’s appearance is altered, however temporarily (i.e. hair loss); the questions from the public at large begin. 

At the grocery store, for example:

“I know exactly what you are feeling.  My grandfather had prostate cancer.”  Once I stopped screaming in my head about how the two are nothing alike, and incomparable at nearly every level (prognosis, age, treatment requirements, relationship…), I tried to keep in mind the spirit and intention of the comparison: That cancer is hard and really scary, and you are not alone. 

These are comments made by people, simply trying to relate to us.  Limb threatening osteosarcoma on your 11-year-old, on the surface, seems to be in a completely different league from a stranger’s grandpa’s aging prostate.  But if it is your prostate, or your people, the fear and the worry is the same.  I tried to focus on that.  Besides, if I only opened my mind and heart to others with limb threatening cancer on their child, well, I would have very few friends, and very little support.  I would be very lonely, indeed.

Another response, one that you might not expect, is the wide eyed look of a deer in headlights, right before the person in question disappears from your life altogether.  Fortunately for us, we have not had too terribly much of this, and this has been far outweighed by people rushing in to help our family, so the loss of such people who cannot handle this has not been so noticeable.

3) Information, internet and anecdotal evidence

You want to know the latest information about your child’s cancer. I completely get that.  You are sleepless and scared.  Rather than phoning a friend in the middle of the night, while your child is most hopefully asleep, but sleep eludes you, you decide to use the free hospital wifi to surf the net and do some research.

I have had dear friends advise me that “nothing good happens after midnight.”  While this would be cautionary advice for ordering another round of drinks at a bar, I submit that this would also be good general advice for internet research as well.  While the net offers clarification on information that maybe you couldn’t quite digest during the day, I cannot caution you enough about the angst that comes with reading medical information on the internet without live backup in the form of explanations from your child’s doctors. Be aware of the site you are on.  I would return to and reread the first section about “every cancer is different.”

Along the same lines, people will share their cancer stories with you, offer advice that they saw on television or got off of facebook, however remote or unrelated to your child or their cancer.  I would go back to the second section on “telling others.”  They want to relate.  What they say does not necessarily relate.  But you have to recognize and appreciate the effort.

Statistics.  I am in no position to speak about statistics, mostly because I have long ago rejected them.  Having a hideously rare genetic predisposition to cancer and 3 episodes of pediatric cancer in our nuclear family to date… well, stats cannot comfort us.  So, why should I let them frighten us?  Why should I pay any attention to them at all?  I had a friend once say of statistics, “Even if you child has 98% odds in his favor, it is meaningless to you if he is in the 2%.”  Her child had less than 10% odds, and for the record, is healthy over 5 years out. :)  Like they say of politics, it is all local.

4) What can I do?  How can I help?

Latch on to these words.  Hug the person who says them.  Embrace, and accept this, despite any reservations that you may have.

I had a very hard time with this notion of accepting help.  But for my other children, I knew we needed help.  They needed rides to practice. They needed distractions. They needed to know that they weren’t alone, even though we would be gone, sometimes for weeks at a time.  I had no idea how hard or how long this was going to be, or how tired I would become.  Otherwise, I would have gotten over my hang up about accepting help…much, much sooner.

Initially, the notion of having meals arrive at the house from friends and neighbors was hard, because I felt like this would be surrendering in a way, allowing cancer to change who we were.  I was the lady bringing the meals, not receiving them.  What did this mean if I was receiving them? 

But people wanted to help, and in a helpless situation, where they cannot fix what everyone most wants to be fixed, loved ones can ease your burdens in other areas.  They help with what can be helped.  They drove. They cooked. They took my kids on special dates.  They sent Legos and activities for Brent in hospital.  They sent cards.  And I know they prayed….because they told me about it.  I was comforted by all of this.

It is a long road, with long to do lists, most of which cannot be delegated.  Anything that can be, allow to be.  You have to prioritize your time, your energy.  Let someone else clean your house if they offer.  Or cut the grass.  Or cook, or change your oil.  Let them.  So that when you are home, you have the time and the energy to read your child a book, snuggle close on the couch and watch a movie together, whatever comforts and connects you.  I suspect that cleaning out the gutters is not included in ‘meaningful time’ at home…so if it is offered, accept.  Gratefully. 

And if you are reading this, and want to offer help to a family in need, try to do the thinking for the family.  Show up with your rake, or your snow shovel, or a casserole that could be frozen for another night. Take the kids to a movie, or the dog for a walk.  Whatever your talent (or capacity for the mundane) be specific in your offer, because while we received many very genuine offers of “whatever you need,” I couldn’t think enough to even see such a need (unless it was a raging fire right in front of me), much less match it with the person best suited for the task. I was barely capable of ‘yes’ or ‘no’ responses to specific help offered.

We received gift cards for gas, and pharmacy, and groceries.  Even with good insurance, things add up fast, in ways we didn’t imagine, far beyond me giving up my small business. We received notices of donations to cancer research, support of cancer organizations in our name.  These were a way for people who didn’t know us personally, to help support us nonetheless.  They were all very meaningful.

5) When it is over, it is not over

For so long, we counted the days until we finished chemo, then until Brent’s counts recovered…the magic day when we would leave oncology behind and we would get our life back.  I do not want to be discouraging, but, for the record, your life will never be the same, and the considerations of cancer continue long past chemo. I am not saying that you should not look forward to that day, but the change is not as dramatic as you might imagine, which can be disappointing. There are scans, and labs and worries and well, just stuff.  Brent is now 9 months out from chemo, but we have yet to go a week where I have not dealt with oncology for some repercussion of his treatment, and never mind the nonsense that we have for our ‘genetic concerns.’ 

Straight up cancer is a long road.  But it is much longer than they will tell you on the day that you get your treatment “roadmap.” I am in no way complaining about the long road, because the alternative is unimaginable.   And if you have ever been on a pediatric oncology floor, you are very grateful for the opportunity to be tired from a long hard slog.  However, I would recommend re-reading the section about accepting offers of help at this point.

You will get through this. It will be hard. And horrendously unpredictable, which is utterly exhausting.  But you will find support, probably from unexpected places. And you will never look at the world in quite the same way. These are the absolute truths I can offer.  Beyond that, as in all things in life, it is up to you.  I send you love, wishing you health, peaceful moments, and the wisdom found in the serenity prayer.   

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.