Something Important and Wonderful

by Mel Heller, MD

Hi, it’s me again, Mel. I’m back with another appeal.

How shall I begin this time? Well, we light a candle when one of our small group dies.

I am very touched by that, and by the posts of some of our GISTmates who mourn the sad departure of strangers whom they’ve never met, except through their posts. That is quite something in my opinion – that we can feel so deeply the loss of veritable strangers – persons known all too briefly, and only in Cyberspace. Let us not take that kind of bonding for granted. How does that work, and how did that come about?

Well, it took a lot of very determined work to begin with. Lee Ann, Rich, Marina, Bev and likely others have now created and nurtured something very good and fine for us. I do not know who all did this, but in a movie like Casablanca these would be our “usual suspects”. I, for one, am very grateful for GSI. As I read our posts, our very human posts, I see that GSI has somehow come to attain something of a life of its own, and that we GISTers can, if we wish, become part of this private, entirely voluntary community, sharing if we wish parts of our lives as GISTmates, for lack of a better word.

Some of our GISTmates have written so generously and intimately that they sometimes seem almost to share pieces of their soul – if you stop to think and wonder about such matters, as I do. If we look patiently and long enough at the manifest words of our posts, a latent or shadowy picture sometimes emerges – an image of deeper feelings and special content that rises to the surface. Perhaps that is because we are moved by cancer, but perhaps for other reasons as well.

But, whatever it is that generates the inner images we slowly discern in each other. I think it reflects a kind of spiritual kinship that is nurtured and somehow grows in the shared garden or ground of our common experiences and concerns as patients.

Think with me. Why do we post to each other? Just to get information? Don’t kid yourselves. Hopefully, we can get all that much better from our own doctors, from the sarcoma specialists, and from selected sites, articles, and responsible cancer resources on the Internet. It is more than that which we seek.

There is, I think, something of companionship, or spiritual value, for which we yearn, and which we receive from each other, clinging, and touched as we are by the fearful and unpredictable finger of our unique sarcoma.

Intentionally or not, GSI has, I feel, developed something of a special quality.

I don’t want to sound spooky, but until someone comes up with a better word for it, I think we have come to share a bit of “Cybersoul”. Why else would we feel so sadly diminished, and mourn when someone departs from our shared Cybersoul? Why do we light a candle?

But, something equally as important as death, and far more wonderful I think, is about to happen in our shared congregation, that stirs our Cybersoul. I hope I’m not making any of you too nervous, but let me assure you, I’ve been around the block a few times, and I think I know this territory. Sometimes, it makes some folks a bit nervous to dig down deep. If it seems scary or weird, take my hand.

We light candles. We struggle with GIST and the fear of death – but GSI is no Temple of Doom. Life is for the living, and so is GSI. Yes, death is powerful and inevitable – but life, having come first, must certainly have been around as long as death. It must, therefore, be equally as powerful, and as inevitable as death.

I need to believe that life is as is inevitable as death, and that life regenerates in the offspring of our friends and loved ones…and in theirs, and in theirs, and in turn theirs – and on and on into the infinite future. I need to believe that our remotest ancestors somehow grasped that vision of continuity, instinctively and intuitively, from the very beginning – even while fleeing from carnivores, or scratching desperately for edible roots in a barren landscape – that one day, in the far off future, their distant offspring would endure, prevail, and have it better.

Well, we, in our ongoing generations, are those offspring, are we not? Why are we getting scans, lighting candles, doing what we can, what we must, and enduring? Why are we hanging in there with such hope and determination? Is it only for ourselves? Or is there something built into us, a kind of duty that sustains us – a protoplasmic trusteeship, if you will, between those distant ancestors, and our own distant offspring? Are we not, therefore, Trustees – transient transporters of some sacred and mysterious continuity of life designed, and even programmed perhaps, to adapt and extend far into an unimagined and infinite future? I do not know, but I sometimes think of that when we light our candles – and it gladdens me.

So, in that spirit of gladness, let me tell you something wonderful and important that is about to happen to our GSI. For the very first time, to my knowledge, one of our young people, a very brave and bright young man, age27, and assailed with GIST and liver metastases, is getting married to a girl who must trust and believe very deeply in him and their future. That is it’s happening a week from today, on Sunday 9/21/03. The groom’s name is Charlie Savage. I don’t know hers.

So why am I so excited? I hardly know Charlie, except form his few GSI posts Why do I think GSI should be excited? Well, it isn’t every day that one of our young people gets married, that’s why. As far as I know, none of us were invited to the wedding, but I thought that somehow some or all of us ought to be there, standing with our Charlie, and wishing this wonderful young couple well. Wonderful? Let me tell you why I think so.

The only things I know about Charlie come from his few GSI posts to us. I’ve never met him, and we’ve never talked – but I thought I ought to go back and find Charlie’s posts, and read them over, perhaps in honor of the occasion, perhaps to get to know him well enough to join the celebration. So, I just did that, reviewed his posts, that is – and something wonderful happened. Need I tell you GISTers how well one sometimes can know, and begin to hold dearly, a person one has never met, or seen? Just from reading a few posts.

Sometimes, a young patient, perhaps a child, will naively ask me, “Do you read minds?”

“Of course not”, I answer with a smile. “I read words. Sometimes, when we really listen to each other’s words, we can tell some things about each other’s minds. Would you like me to listen to yours?” That’s how some friendships and therapies can begin. So shall we listen together to the words that Charlie has posted to us?

Charlie Savage, who is indeed a young person, but by no means naïve, I guarantee you, did want us to listen to his words. That’s why he wrote to us in the GSI. Isn’t that why any of us post? Don’t we want to “listen” to each other’s words, thoughts, and pieces of our mind so to speak – and sometimes even pieces of our hearts, as well?

So let’s read about Charlie. I am not sharing any private secrets. We read only from what he has posted to all of us, openly, voluntarily and – from his tone – even eagerly. Let us see if we can begin to discern some kind of portrait of Charlie, perhaps a modest wedding picture for him and his bride – not done in oils, but tentatively, as a pencil or charcoal sketch, traced from his words.

First, a brief note, a caveat, for any who might feel an occasional duty to act as a self-appointed privacy-police officer, and blow their whistle at me. I am truly grateful for such persons, as I am for all of our police protection in these much-troubled days, but I am particularly pleased when they don’t blow their whistle too shrilly, or threaten me with a Billy club.

Know that I would never write or publish, without Charlie’s written permission, anything about him outside of this specific Listserv, which is exactly where Charlie voluntarily and openly published his posts to us to begin with. As furthermore, as we read his words, he specifically was seeking feedback, support, and a sense of community. So with all that in mind, shall we now read his words, and think together about this young man and his bride, of whom we should all be so protective and proud, on their wedding day next Sunday? Take my hand.

Charlie began posting to us at the GSI on 7/23/03, describing himself then as a 27 year old who, “was diagnosed with LMS in October 1998, with a primary stomach tumor and liver mets, though once Gleevec came out they went back…and discovered it was actually GIST.” Charlie then tells us that he “had two surgeries, the second being radiofrequency ablation at M.D.Anderson in Dec. 98”, followed by “four and a half years of clean scans. Thought I was home free, but today my semi-annual CT scan revealed a new 1.5 cm. spot on my liver.”

He also tells us other things about himself, stating that he wrote a newspaper story for the Miami Herald in 1999 that “got some attention” about his experiences in ACOR’s LMS listserv community. He added, “I’m getting married in September” and signed off with “Thanks for letting me join, Charlie”

So, as I’m reading Charlie’s words with you, he’s thanking us for letting him join GSI.

For that reason alone, I find myself liking him, but I’m also most favorably impressed with his succinct and organized description of his situation, options and treatment prospects. Also, he’s very bright, I think – and he seems very level-headed. He is a very young man who now knows that he is once more in jeopardy, but he – and his presumably well-informed and understanding bride to – seem to be objective, realistically concerned, but optimistic. And that is quite a lot to for us to read, understand and admire about this young and young Mrs. Savage-about-to-be.

So I see good stuff in this young man, and remarkable stuff in this young woman whose love will take her to the altar with Charlie next Sunday. Why do I say that? I see real and hopefully abiding love here, and I am very impressed with Charlie’s bride whose name I do not know. Charlie referred to her only as a “trooper”. Trooper is good, but Charlie knows she’s more than that – a blessing in his life these past months, and with any kind of luck, hopefully long into their future.

You see how easy it is to read minds? All you need to do is read or listen to the words, not merely with your eyes and ears, but with your own mind – your perceptions, thoughts, feelings, and associations. They are not infallible tools, but used properly and with practice, a picture begins to emerge. Take my hand.

So then Charlie writes again, the next day, on 7/24/o3, thanking “everyone for the warm welcome and influx of information about such things as…whether it was Exon 9 or 11 that had mutated. I knew that joining this community would be a strong first counter-move against this resurgent situation.”

And then he goes on and talks about his prospects for liver surgery versus Gleevec, reflecting that, “Last time they cut my stomach from kidney to kidney and it took me forever to recover. But, with a September wedding, that would really suck.”

So, here I am, Mel, reading these posts, and finding myself really beginning to care about this young man. He’s already quite fine in my book. And based on his vocabulary, his conceptual ability and his communication skills, I would automatically raise my previous estimation of his high IQ by an additional ten or more points. (I don’t do this kind of thing purposefully, but as I say automatically, just as you do when you meet someone and make an unconscious assessment or reading of their smarts.)

Not that any of us here really care about numerical IQs, but if you’re a young person like Charlie, facing a “resurgent” GIST (good word, Charlie) – in love, and wanting to marry, and maybe change jobs – it probably helps to have a bit of extra IQ going for oneself (as well as extra luck, I thought to myself).

Charlie didn’t write again until 8/21/03, almost a month later, and in three successive posts on that date he told us that he was “still a little stunned about how expensive it is” (Gleevec), and adds, “Thank God for insurance – but it certainly complicates my current search for a new job in a different city (D.C.) in order to live with my fiancée. To answer one question, wedding plans are gelling – in exactly one month, I’ll be married. An intense summer. Feel somewhat guilty for dumping all this on her – I presented it to her in the past tense. But she’s a trooper.”

And then Charlie goes on a bit, debating with himself the prospects for liver-met surgery versus “needle RFA”, and he wonders if going with Gleevec alone seems to be “insufficiently aggressive” (his words – thoughtful, precise, sharp).

He writes again that afternoon telling us that he has three liver tumors, two of which were higher up, blocked by intervening ling tissue, which would rule out RFA (radiofrequency ablation).

Then, with all this on his mind, later on that same day, around supper time, he posts about his ideas and suggestions for a Survey, “off the top of my head, so refinements are good. Something like….” And then he goes on and spells out a rather neat little questionnaire that compares favorable with many of those submitted by my staff when I conducted similar clinical and survey studies during my academic faculty years. So why not go with this good young man, despite all he’s wrapped up with these days.

There were a couple of other posts around the beginning this month, September, that tell us a bit more about Charlie. But then, on 9/8/03, Charlie writes, “A friend of mine stumbled across some information on the web that indicated that Gleevec use by the father led to higher incidence of birth defects in offspring.

Since I’m getting married in two weeks, this is of interest to me. I did a google search and came up with conflicting reports”

And then Charlie signs off, adding, “BTW, two-and-a-half weeks in, I’ve got no (Gleevec) side effects so far as I can tell.”

And that’s it. That’s the last we’ve heard from Charlie, as I scan to date the self-portraits he has posted to us. Did I say the word, “scan”? Did you know I did “scans”? We all do scans, of one kind or another, on each other, and hopefully look into ourselves from time to time.

So let’s look at Charlie’s last scan together. I think it tells us some very important and beautiful things about both Charlie and his bride. It tells us they are thoughtful and responsible young people who are not getting married just for “fun”, or to see how it works out. She wants his baby; he wants to get her with child, but he is worried about Gleevec. That is a pretty dramatic scenario: strong love, young passion, cancer, jeopardy – stepping into an unknown future together.

This is no morning soap opera, but very real, wonderful and very important people to anyone whose lives have ever been touched GIST. And now you can begin to see why it is that I think we need to love Charlie and his bride. They are looking metastatic GIST right in the face – not defiantly, but thoughtfully, bravely and responsibly. And they will say, a week from today, “Yes, we are going ahead with this, together as man and wife, come what may.”

And if that, Dear GISTmates, doesn’t tell us something about the conquering power of love, and the faith of two young people in each other, then all of the candles we burn for our departed may be for naught. I hope you are moved, as I am, to embrace this young couple for inspiring us so. Here is a postscript:

Dear Charlie and Bride, maybe this isn’t much of a wedding picture, or any good likeness of you, but it was the best I could do. We who call ourselves GSI are, I feel, something of a congregation who meet in a Cyberchurch where we learn, and sometimes, pray together. We send you our blessings and best wishes on your wedding day. Live well, and make life together as beautiful as you can for each other.