SARCOMA!?!?

I still remember my doctor’s face when he told me. 

He was a kind, older, burly man with a semi-scholarly, semi-fatherly air.  He’d always been so sure of himself, but now he looked worn and puzzled – and, as an award-winning professor of surgery at George Washington University Hospital, he was not used to being puzzled.  He told me the pathologist was reporting that my tumor was a sarcoma – but that just couldn’t be, he said.  Sarcomas are extremely rare to begin with, and they don’t occur in breasts.  (He was wrong about that; they do occur in breasts but are only 1% of all breast cancers).  Sarcomas are so rare, he went on, that the pathologist at GW only saw one or two a year; maybe he was mistaken.  The surgeon advised that we wait & see – even if it was a sarcoma, he’d been able to remove the whole thing.  He thought.  Even if it did recur, it was a low-grade variety, and if it did happen to recur, we could treat it more aggressively then.

I rode the bus down Pennsylvania Avenue back to work, stunned.  The familiar buildings slid past my eyes, other people got on and off the bus.  All I could think was:  I have cancer.

I have cancer.

At the office I told my coworker Elaine what my doctor had said.  Elaine, bless her heart -- saving my life in that moment of speaking up – said:  no.  No, you are not going to settle for “waiting to see” or a pathology report from someone who may not be sure what a sarcoma looks like.  She called a friend at the National Institutes of Health, who gave her a name for me to call.  I dialed the phone; the voice on the other end of the line became lively.  Yes, they happened to be doing a study at NIH on sarcoma, and YES, they’d be VERY interested in seeing someone who might have it in her breast.

Finding The Lump

Thirty years ago, soaping up in the shower, there it was.  It felt big as a ping-pong ball, and in my little A-cups, that was huge.

I was not as alarmed as you might expect.  See, I’d had lumps for years and years.  The first one was when I was 16.  That one alarmed me considerably, but in a detached, invincible-adolescent sort of way.  I remember sitting in my room in a cold sweat, and the drama of thinking “Wow, I might die!” but it such an alien thought that there were no images or particular fears to go with it.  The doctor quickly reassured me that it was just a cyst, and sure enough it was gone in a few weeks.

Then in my early 20s there was a string of lumps.  Some were also cysts, and went away quickly, but some didn’t go away – and made the doctors frown, because their experienced fingers felt something awry.  That was when it got scary.  These lumps had to be removed surgically, and biopsied thoroughly to be sure they were benign.  The surgeries were done under local anesthetic, which was a creepy experience: feeling a lot of tugging and hearing the snipping of flesh, but all as if completely detached from my head.  The incisions were messy and the bandages extensive (even A-cups jiggle) but they all turned out to be benign “fibroadenomas.” After the third or fourth time, it was unsettling but no longer traumatic.

So I was mostly just annoyed when I found the ping-pong ball.  “Oh, this one’s going to have to come out,”  I thought, and my doctor agreed.  But I had a big vacation coming up – my husband and I were going to the west coast for my brother’s graduation, and then we’d take several days to explore San Francisco – and I didn’t want to spend those two weeks strapped in ace bandages.  The doc agreed there was no rush, and we put the surgery off until after my trip.

Getting Back To It

Sorry, I've been away for a while.

Not "away" as in out of town, but away from working on this blog.  There are many reasons:  we lost power for a couple days, then I got the ‘flu, then we had company, blah blah blah.  These are all lame excuses.  The pea under the mattress here is that I told a lot of people I was doing this, and then I got scared.  It seemed too big, all of a sudden.  So as soon as I finished the previous post about staying flexible, I began to stiffen up.

I’ve gotten myself in trouble REPEATEDLY during my life, by aiming myself towards tasks and challenges and lifestyles for which I was simply not suited.  “I can do this… ”  I think, or more likely “I should do this…” 

For instance, take my attempt to be an ordained minister.  When I was going through the cancer treatments, my pastor and the chaplain at NIH were incredibly helpful to me.  I started to think “I want to help others the way they are helping me!”

I started to volunteer at my church, leading a group of folks who were also dealing with cancer.  I found that the reading and reflection on spirituality I did to prepare for the class were the most nourishing aspects of my life.  (Note that the actual work with the class wasn’t the part that hooked me.) Long story short, I got myself into seminary and onto the bureaucratic conveyor belt that would take me into ministry.  After having lost my previous vision of my future as a Mom in a big family, I had a new and exciting vision of myself as a minister.

Seminary was wonderful.  It gave me the time and encouragement to study and think and reflect and philosophize to my heart’s content.  However, once that was over I was assigned to a  3-point charge (that’s 3 churches sharing a pastor, for those of you who don’t speak Methodist) in rural Maryland.  It was AWFUL.  It wasn’t reflecting on spirituality and God  – it was committee meetings and arbitrating disputes within the choir and paperwork and Lord help me potluck suppers with multiple Jell-O salads where you had to eat some of everything or people got their noses out of joint.  It was parishioners peering into my windows late at night to see why my lights were still on.  It was knowing that a certain community leader was a vile SOB to his family, but because I’d been told this in confidence I had to be polite to his face. UGH!

Where had I gone wrong?  For one thing, I focused on what I wanted to do, or thought I should do, without considering what I was actually capable of doing.  I had appreciated what my chaplain and pastor did for me without understanding what their long days were actually like, and what gifts and strengths they had that let them do the whole of it, not just the part I saw.  I completely underestimated my own limitations.

I’m not sorry I tried; it was an incredibly enriching experience.  I learned a lot about myself, including my limits.  I think I did some good while I was out there trying.  I just couldn’t keep it up.  And, of course, it was dreadful when I had to bail out: another life dream gone in a puff of smoke.

So, what about now?  This sharing of thoughts with you in the blog-o-sphere is MUCH less of a risk, yet I’m stalling and slightly overwhelmed at the idea.

Hmmm.  Well, I intend to keep trying, one step at a time.  We’ll see what happens!

God and a Grandmother's Lap

One of my earliest memories is of standing in front of our congregation with the children’s choir, singing “Jesus Loves Me” – and all of a sudden believing it.  I remember there was sunshine streaming in from high windows, and the shafts of sunlight were filled with what I know now were dust mites but at the time looked like flakes of silver.  I felt loved.  Ever since then, God has been real to me as an entity of love.  Even if I wasn’t feeling it in a given moment, I could remember the feeling, and know it reflected a transcendent reality.

I thought of this recently when reading a review of the book Chinaberry Sidewalks by Rodney Crowell.  He wrote:

"As a boy my favorite place in the world was my grandmother's apron-covered lap. Rocking on her lap … I remember knowing for the first time that I was loved. In time I came to understand the nature of her love as being part of an even greater love, one that loved my grandmother for loving me." 

That’s it!  The transcendent LOVE he describes is what I believe God is  – and we, whether we know ourselves to be people of God or not, can be channels of the Love, vehicles for it.  In Christian terminology, we can act as Love “incarnate” – Love in the flesh.  

How cool is that?

Staying Flexible

One of the pains-in-the-butt about nearing 60 years old is the stiffness.  If I sit at my desk or on the sofa too long, my legs don’t want to unfold, let alone walk. My hand cramps up from using the mouse. When we’re on a car trip and stop for a break, I am startled to see a reflection in the convenience store window, limping.  Who is that poor old thing?  Uh oh.

I try to fight it.  I do stretches in the morning, go to the gym 3-4 days a week (even though I hate it) and I’ve been playing games with the Wii, which are actually fun until some body part or other starts to hurt.  It is hard to know, on any given day, whether it will be best to rest the offended party, or push through and exercise it.

It isn’t just physical.  At church this morning, the other lay leader and I had just worked out who was going to do which reading when we realized that it was the 3^rd Sunday of the month and thus Youth Sunday.  The Youth pastor was scrambling to line up Youths to do the readings.  He finally found almost enough, with one young man reportedly on his way who could do the second reading.  Would I be on stand-by to read it, if the young man didn’t show?  Sure, I said, but mentally I was noting to never sign up to be a lay leader on 3^rd Sundays, because the disorganization was so annoying.

Happily, I caught myself in mid-thought.  Even in my head it sounded grouchy and Old Fartish.  So I spent a good part of the service pondering the need to exercise my mental (and judgmental) flexibility, to keep it limber too.

This afternoon, Ray told me he’d heard from his friend Ben Mwangachu that the college in Rwanda that Ben supports is in need of someone to teach management this summer.  Somewhat to my own surprise, and before Ray had actually formulated a question, I found myself saying YES, let’s do it. 

There are a lot of questions to answer before we can make a commitment:  How much is airfare to Rwanda?  Is it really so much safer there than it was?  What do we know about what Rwandan students need to know about management?  Would we really do any good?  And, summer on the Equator – for me, who can hardly stand summer on the Potomac? 

But.  It needs doing.  And we have knowledge and experience that could be valuable, but only if we share it.  And it would be one hell of a place to celebrate a 60^th birthday.  And – I think this is what life should be about:  sharing and daring and giving and trying.  This would be a good way to “walk the talk.”

We may or may not end up going.  But I’m glad to know I said “Yes” to the idea – a mark of some flexibility, after all.

Type C

I am not a good person.

I had to face this Saturday night, when we were watching the movie “Knowing” in which the central characters learn that the world is quite literally about to burn up.  Of course, I began to think, “What would I do if there were only a few hours left?”

My first thought was “Where is the ice cream?”  Second thought was, “No, wait, BACON first, then ice cream.”  There was a brief mental scuffle as I weighed the risk of spending my last hours with severe indigestion, but I decided to go for it.

Later my thoughts drifted into self-critical mode.  Surely, if I were a good enough person, I would have thought to comfort frightened neighbors, or imagined going to church & kneeling in prayer?

And then I thought:  Oh, lighten up.  But this does bring me to pondering the question of The Cancer-Prone Personality.

According to the Psychology Lexicon, the cancer-prone personality “refers to a behaviour pattern marked by cooperativeness, unassertiveness, patience, suppression of negative emotions, and acceptance of external authority, supposedly associated with an increased likelihood of cancer.”  It was termed the Type C personality, and considered in the same category as the Type A personality (aggressive and prone to rage) link to heart disease.

The theory of the Type C Personality has been debunked, re-asserted and re-disproven in cycles over the years, but it was pretty hot when I was dealing with – and trying to understand – the disease.  I must say, though, I was a poster child for the Type Cs.  Early in my childhood, I had adopted the role of the Good Child – trying very hard to stay out of trouble by being obedient, following The Rules, and keeping my opinions to myself. My big brother got in trouble a lot when we were growing up, and I remember swearing to myself that I would do ANYTHING to keep from getting yelled at the way he was. 

(Phil, if you’re reading this, please feel free to chime in – does this fit with your recollections?  Or have I developed a false mythology about myself here?)

Anyway, I spent a lot of time and energy trying to figure out what it took to be a Good Person, and trying to live in that pattern.  One of the books I read about the Type C Personality posited that it was people who tried to follow what they perceived to be “The Rules” – and then found out that The Rules did not lead to a satisfying life – were the ones who got cancer.  And there I was, trying to be a Good Person, and boy, was it ever not satisfying.

I have a lot of thoughts and questions about all this:  Isn’t it possible that emotional suppression and depression can be linked to suppression of the immune system – and thus increase susceptibility to the growth of cancer, without being the blame-the-victim cause of cancer? Is the stereotypical “Good Christian” – cooperative, unassertive, patient, obedient – a literally unhealthy model? Is that stereotype true -- is that what being a Christian means?

But don’t want to write a whole book today.  So I’ll stop.  For now.

The Baby Thing

I have such a vivid memory of this.  I was 15, and had a regular babysitting job for a family down the street:  two little boys and a baby girl.  One night the girl was sick, miserable and whiny.  She couldn’t sleep, so I held her and walked her.  She wasn’t tiny any more, probably close to two years old and getting heavy.  She smelled of spit-up; she was sticky with sweat; she squirmed and fussed.  I walked and patted.  Slowly the squirming stopped.  She went limp against my shoulder, and started a raspy snore.

Something electric went through my body.  THIS!  I WANT THIS!  It was a revelation.  I kept walking her, even though she was totally conked out.  I couldn’t get over how wonderful it felt to be holding this stinky, sweaty, sour little creature and to have brought her comfort. 

Ten years later, when the doctors told me a large growth was devouring one of my ovaries, I walked to the bus stop in the rain and literally shook my umbrella, in a rage, at God. I was less upset that it might be cancer than I was that it might mean I’d never have my own babies.  “How can you do this to me!?!”  I ranted.  (My theology was juvenile but my rage was genuine).  “How can you give me such a longing to be a Mom, and then take away my chance to do it?!?!”

It wasn’t cancer that time, “only” endometriosis, and it was another 13 years before I had to give up the other ovary and all hope with it.  (More on that another time.)

But now, 45 years later, I am Gramma Sue to 9 little ones!  I have known most of them since they were born; I’ve been able to watch their personalities emerge and it is every bit as captivating as I’d dreamed.  I’ve heard them yell “Gramma Sue!” and run to me for a hug.  I am known for my cookies.  I’ve also been thrown up on, bashed in the eye by a careless elbow, screamed at and ignored.  It is all precious.