Living Well In Spite of Sarcoma

The moment when the doctor pronounces the word "cancer" and he means you, is the most heart-stopping moment in history. The next worst is the moment when the words have become: "It has spread." Or, more simply: "Mets."

Right up there, however, among the very worst, is hearing that a close friend has died of the same disease. Carol Berres, my first Internet buddy, warm, witty, fellow writer and mother of two young daughters, died last week. I tried not to focus this essay on her for fear you would find it depressing, and I wouldn't be able to see the words through the tears. Yet she has crept in, on "little cat feet" and I welcome her looking over my shoulder, whispering suggestions.

Once you begin this cancer journey, especially when the diagnosis is sarcoma, you have many tears in store, much pain to bear. Mental pain, especially loss: Carol was my closest friend, but not the first taken by this disease. Dean, Sandy, and many other gifted, loving people also meant a lot to me. Physical pain: I've endured five deep abdominal surgeries, one complicated spinal surgery, two RFA (Radio Frequency Ablation) treatments, and endless, numberless tests and "procedures," as the doctors euphemistically term those assorted invasions of your body. I am now a chronic pain patient, with peripheral neuropathy and a huge ventral hernia wherein my lower insides are now happily "hanging out," as we like to say, resembling a very low and not-very-pretty pregnancy. I'm sure you have fought your own battles, and wear the scars to prove it.

We all have tough stories to tell, yet somehow we endure and grow stronger mentally, even if we might weaken physically. I'd like to tell you a little of what I've discovered along this seven-year journey, a few ways I've found to keep the joy in life, despite cancer, despite the losses and the pain.

While I'm fortunate to have an extraordinary family who support me with love and giving, especially Doug, my endlessly patient caregiver, if you haven't actually trekked a thousand miles in these worn sandals, it's not easy to understand the totality of the experience. I am not really a "joiner," yet have found a great source of strength by drawing upon other sarcoma survivors in my computer list-servers. Yes, it means risking the loss of dear people. But, we also have an ever-growing body of friends who are beating the Beast, one way and another, at least for now. A world of support exists in cyberspace, people who face the same problems, and share information on vital subjects known only to those of us dealing with our rare type of sarcoma. It feels so rewarding when you can give back: help a bewildered newcomer become oriented, share needed information or experiences, or simply offer your deeply felt sympathy for a friend's difficult time. Giving helps you feel renewed and enriched. We need our cyber-friends because more common cancers may have local support groups, but we sarcomas are rare. As a certain Saturday Night Live character from the old days would say, "Aren't we special?"

I was first diagnosed with Leiomyosarcoma (fondly known as LMS) on my 54th birthday, the 4th of July, 1997, when a tumor the size of a baseball ruptured from my small intestine, more than seven years ago as I write this. The only studies we could find back then predicted that 9 out of 10 did not survive 5 years. Immediately I decided that if one out of the 10 lived, I would be that one. Whatever it took, I would hang on until they discovered something that could help me.

My immediate instinct, the moment I came home from the hospital, was to begin reading: any reports family or friends could dredge up from the newfangled Internet (back then, not a lot, and all of it most discouraging), plus books and articles by survivors, and upbeat doctors like Bernie Siegel: anything I could find on cancer in general, sarcoma in particular.

Knowledge is power, and the more you know about your disease, the better you can cope with it. I feel passionate about this. Early on, I enjoyed the uplifting books by authors who made me feel I could deal with it, but when I joined the Web world, I also sought out serious articles and medical studies. Cold, hard facts weren't always comforting, but they gave me the information I needed to ask the tough questions of the doctors, to know what to expect with certain treatments, the less "nice" but very necessary tools to deal with new tumors, new treatments, and ultimately the tools to live.

Most of the books on living strategies suggest an exercise using relaxation and visualization to imagine your body's immune system fighting those rotten rogue cells. One day, soon after my first operation, while trying this alone, it occurred to me that hypnosis was an even more intense version, a quicker way to relax and reach deep concentration. I'd been taught self-hypnosis but it had been years since I'd used it—I needed a brush-up. I also figured a little therapy tossed in couldn't hurt. I thumbed through the phone book, chose the hypnotherapist closest to me, and made an appointment, promising myself that if I didn't like her, I'd be outta there fast, moving on to the next.

Well, Andrea was exactly the right therapist for me: well and widely educated with a wall literally full of degrees, brilliant but also down-to-earth, warm, no-nonsense, and full of corny jokes fit for whatever occasion. Let me tell you how good she is. One day I crept into her office, devastated by the news that a met had been found on the top of my liver. Well, within 60 minutes she had pointed out the tumor was small and could, with luck, be dealt with by RFA, not surgery, so that was something huge to cheer over. Plus the liver regenerates: therefore of all organs to choose it was the best. And so what if it meant I was now ruled Stage IV?—those were just numbers for heaven's sake. Then she threw in a few terrible jokes here and there… In one hour I left her office feeling positively lucky to have a met on my liver!

Take my advice, if you're newly diagnosed: find your own Andrea. Whatever style of therapist you prefer, a good one can make such a healthy difference in your life… plus relieve your poor family of a lot of tears and complaints. Dump some of it on your therapist, for your family's sake as well as your own.

Because most sarcomas don't respond well to traditional chemo and radiation, back in 1997, and sadly still true as I write this, the only way to survive LMS was to have the tumors removed surgically, or with RFA, or other invasive, often "uncomfortable" procedures. Don't you just love it when doctors and nurses use that word? You know darn well you should run as fast as you can in the other direction. By the way, for a low-impact procedure, choose RFA whenever you can. It's now used on lungs and a few other organs as well as the liver. I was out of the hospital the same day, with fatigue but little pain.

So, to hang on until help came, I had the various surgeries and such, until one day in the fall of 2000 Andrea told me she'd been nosing around on a website and found a new type of drug that was about to go into trial for something called GIST (gastrointestinal stromal tumors). Then dubbed STI571, the drug was being used on a rare type of leukemia, CML (Chronic Myelogenous Leukemia), with astounding success—as much as 80% shrinkage! What was GIST? Well, it might be my type of cancer, instead of LMS. She suspected I met all the qualifications, as my tumor originated on the small intestine, and gastrointestinal stromal tumors were found, as implied, on the stomach and intestinal track only. To find out, I needed to have my tumor tested at Yale, to see if it was ruled something called c-kit positive. A few weeks later the good news: I was "highly positive"!!! The irony is that since that time I haven't had a single met so I haven't needed Gleevec. Yet I'm immensely comforted knowing it's there, when and if I do.

In a sense of thumbing our noses at the gods of destruction, to make up for being gifted with a rare leukemia, CML, plus my rare GIST and two other diseases even rarer… patients with these four are the first beneficiaries of the new genetic research, all because they bear the same genetic marker, our dear ol' c-positive kitten. The FDA's official approval came in February, 2002. I'm not about to get into how it works, only tell you that it happens, and it could happen if you have a different sarcoma, and the researchers happen to identify the marker for your variation. For my many friends with LMS, my old diagnosis, I pray their miracle isn't far off.

Gleevec, as STI571 is now called (Glivec in Europe and elsewhere) has kept many hundreds alive for months and years. Some of the earliest trial subjects are still stable more than four years later. Some see tumor shrinkage, even disappearance, others achieve stability, and as we frequently remind each other: stable is good. More genetically programmed drugs are already in trials, and just down the road a short piece are a whole bunch more. Your miracle may be in a lab right now, just waiting to happen. I surely hope it is. Having faith and hope aren't only lovely ways to live; sometimes that faith and hope pay off in better than cold, hard cash. Miracles happen.

Yet Carol died. None of these drugs is perfect, yet. While Gleevec's effects began to fade for Carol, I blame her death on human stupidity, sadly a not infrequent occurrence. As it does for some, Gleevec stopped working for her after two years and her tumors quickly started to grow. Her terrible doctor (forced upon her by her insurance) either ignored it or didn't pick it up in the May CT scan. She was told nothing until three costly months later, when the next CT showed the tumors had grown much, much larger.

Immediately, panicked, Carol began making arrangements to fly to Boston, praying she would qualify for the new Sugen trial at Dana Farber. To our great relief, she did and began the new drug, handling the side effects, worse than Gleevec's, with her usual good humor. Much more difficult: being in the trial meant weeks away from her two young daughters, Caitlin, a teenager, Cassie only 6. But she hung on through it all. Then in January, 2004, she returned from her visit to Dana Farber, delighted to be home as usual. The next morning she couldn't get out of bed. She'd had a stroke. That meant going off the trial, and that meant her tumors began to grow. "It was incredible," her sister Judith said, "but somehow she managed two more trips east to Dana Farber, escorted by Ruth or me, was accepted back on Sugan, and achieved stability. Yet that certain something had been taken from her, and she began to fade in spite of all we did."

Yet we go on, even more determined to succeed. We try to convert our losses to positive forces to push us onward. Each day, new Carols, Deans, Sandys, hear the doctor speak that dreadful word: cancer. Their souls are suddenly shaken, devastated, their worlds turned inside out with the raw edges showing. Lost and confused by a barrage of information, or a dearth of adequate information, they need to hear from those who have been there, those who can tell reassuring stories, explain all the new terms, guide them to sarcoma specialists, give advice on pain management (my "specialty"), or simply hold a cyber-hand through a bad patch. Sometimes I write in with questions regarding my own decisions, or to deliver good or bad news, or ask for advice for myself or friends. We give and take; I learn and grow.

I deal with the consequences of all my surgeries and the neuropathy, plus the hernia and the scar tissue that from time to time threatens to shut down my intestine, all problems that complicate life. I have recently, with the help of a friend, experienced some mind/body work that most people would discount, yet I believe has saved me at least one operation. And perhaps due to a different mind/body invention of my own (though who can say for sure?) I have not had a met for more than three years. I am gratefully, humbly dancing with NED. NED is a fellow Carol and I concocted before we found the sarcoma list, when we were an army-of-two battling the Beast. NED—No Evidence of Disease—is a phrase found in some medical studies, and I used it in an email to Carol. She wrote back congratulating me on my new boyfriend, NED, and now members on all three list-servers happily report our great results as dancing with our all-time favorite, willingly-shared partner, NED.

Sarcoma is tough. The treatment for it can be brutal. But together we can tame it a bit, help each other, ride out the rougher patches. I mourn Carol and the others I've loved but I know I'm far richer and deeply grateful for their friendship and understanding. In the future I possibly even owe them my life, due to the actual, physical help they offered by participating in the trials that refine new drugs. Read all you can; educate yourself for the battle of your life. Literally. Find support, both a professional therapist if possible, and a group on the Internet if not in your community. Think of your family and close friends: spare them what you can by dumping a lot of stuff on both your Andrea and fellow net-friends. Plus you'll benefit from invaluable information trading and sharing as well as the emotional support only a professional or a fellow patient understands. And then hold onto faith and hope. Miracles do happen. They really do.

I hope your miracle arrives for you. Soon.