UNION-TRIBUNE STAFF WRITER
Despite chemotherapy, Drew’s tumor continued to grow. Doctors decided to operate again, to buy him time until they found a drug that would kill the cancer. On April 12, 1996, he underwent a second surgery, which doctors said would be his last.
I cried when I lost my hair. That was two years ago. I remember walking across the street from the UCSD Cancer Center to the main hospital for a radiation treatment and, as another clump of hair fell to the street, so did the tears.
It was a strange place and time for that to happen. I should have been worried about brain cancer and life and death and, at the very least, nausea and fatigue.
It was stranger still, because I’m not one to cry. At least not outwardly, though I’ve always wished I could.
I cried again last month, when a group of fifth- and sixth-graders at the Logan School, an inner-city elementary school with a focus on writing and journalism, invited me to a special classroom talent show.
I had been corresponding with them for most of the school year, and knew the show was in my honor, but no one had told me it was “Drew Silvern Appreciation Day,” or that the parents had organized a luncheon too.
Spending three or four hours a month at my computer, cajoling children to write in clear sentences and paragraphs and to look up words in the dictionary apparently inspired them to risk humiliation for the sake of impressing me. Realizing that stands out as one of those “Cancer Moments” I’ve become a collector of: a day, time and occurrence when I can’t avoid thinking how great it is to be alive.
I cried again a couple of weeks ago while listening to the tape-recorded interviews of my family members about the impact of my cancer on their lives.
I’ve seethed with rage at my cancer, too, though rarely.
That happened in early April, when I learned that my tumor had gotten bigger, that my latest chemo drug was a failure and that I needed surgery just to keep things at bay for a month or two, while my doctor searched for another treatment. I spent a week angry at everything and everyone because it was evidence, for the third time this year, that I was losing ground in my struggle to survive.
I worry there’s more anger out there, and it just hasn’t found me yet.
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It’s strange how cancer starts out. It’s a physical thing, a tumor, a lump, a spot of malfunctioning, madly dividing, life-threatening cells. You’re desperate to have someone cut, slash, burn and poison them away. “Sure, use anything, do anything, just keep me alive, make it go away.” That’s how I’ve always felt.
And then one day, not too long into the process of becoming a “cancer patient,” you realize that having cancer, living with it, just surviving it, seems to be almost wholly an emotional battle.
Sometimes I liken it to being knocked about in heavy surf: You get cracked by a few big waves, swallow some salt water and gasp, but when you stop tumbling, when you get to the surface, it’s all about floating.
To be sure, my life is still dominated by the biology of cancer. I’m just as desperate as ever for my doctors to achieve what I think of as a military victory.
But when I think of my struggle these days, I think mostly of an emotional struggle to survive, to spend as much of my time as possible alive — actually living — and not waiting to hear good news.
Judging from the comments of my family, or at least the majority of them, and most of the people in my weekly support group for cancer patients and their families — it’s the same.
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“Your pain is my pain, and it will always be that way,” my mom recently told me on one of the tapes she made for me.
Even when she’s an octogenarian and I’m — I hope — cruising through my 50s, it will be the same, she says. I am of her, and the connection never can be broken. And she cries.
My mother, Lila, and brother, Eric, have suffered more from my cancer than I have. I’ve known this for a long time. But their tears just lay it all bare.
I’m on intimate terms with my cancer. I know what it feels like to live with it every day. I’m on a first-person basis with the joy of waking up feeling good, and the fear of having a bad headache.
Those who care about me have to guess. Listening to their words, I believe every thought of me is accompanied by another thought: Am I getting a little better or a little worse?
I wonder sometimes: In the two years since I was first diagnosed with cancer, has my mother ever really relaxed?
While I’ve simply focused on living as much as possible, and as well as possible and, in the process probably enjoyed the best if not the most terrifying period of my life, I think my mother has lived in fear.
It’s all there, on tape, in words and tones that are unmistakably touching, and which communicate emotions that perhaps only a parent, and probably only a mother, can understand.
“It’s like there’s a cloud hanging there, and every once in a while it lifts a little and the sun comes through. But in general (your cancer) is hanging there all the time,” my mother said between sobs.
My mother is a successful woman with a full and active life in Los Angeles. She is a teacher who went back to school in her 30s, became bilingual and rose to prominence in designing curricula for immigrant children.
In her 60s now (though she doesn’t look it), she is a strong person who took charge of her life after her divorce from my father, Rudy, 25 years ago. Still, I’m certain that her every moment is now planned with the caveat that it will be rearranged immediately should I have a persistent headache or an unexplained dizzy spell.
Relationships have soured because, as she says, “How can anyone or anything in anyone else’s life really seem important compared to your cancer and how you’re feeling?”
Long-planned trips have been canceled for important doctor’s appointments or MRIs, and because of her need to feel she’s close enough to be here in a few hours if I need support, or even a motherly meal.
More than once, she’s sobbed, “I just wish I could take all your suffering away, switch my brain for yours.”
Thankfully, she’s also aware that my illness has added to my life and, in some ways hers, as well.
I’ve allowed those who are close to me more access to my life since my diagnosis, but I’ve probably tried hardest to open myself to my mother.
I think I’ve wanted her to have the opportunity for a second chance at doing some of the nurturing that she didn’t have time for when she was the first single parent in the neighborhood, working too hard as a teacher during the day, going to school at night.
We spent a week at a spa together, and I invited her to come river rafting last year with a group of my friends. Along with my brother, we spent her birthday in the mountains. All because of my cancer.
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My brother tells me that my cancer is like a daily lesson in Buddhism, teaching him to live one day at a time.
He makes an heroic effort to do this, but, he’s not a very good student.
I tell him that if I sound good and am not in bed, if I’m at work or working at home, that means it’s a good day and just to accept that.
Though Eric is my big brother by a year, for most of my adulthood it seems he has relied on me for advice and guidance in almost every aspect of his life.
It doesn’t surprise me to hear him say on tape: “I’m really scared I won’t be able to be an uncle, or that if something happens, I might have a wife that you’ll never meet or kids that won’t know you… it scares me even to have to say that…
“My worst fear is that if something does happen and there’s no heaven or afterlife or rebirth, we might never connect again.”
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My father never has dealt very well with my cancer. His own mother died of it during the Depression, and he has survived two bouts with skin cancer without ever really seeming to acknowledge it.
Until the last month, despite my continuing stream of bad news and insistence that he acknowledge it, his response has usually been that, if he thinks only good thoughts about my future, nothing bad will happen.
My surgery, though, has jarred him. He understands stitches and fatigue and pain much better than cancer.
On tape, he says: “I felt that if anything ever happened to you that my life would be over. I would have no real purpose of going on… that you mean a great deal to me… and I feel that I would have difficulty leaving you in the ground and I would just stay by your (grave) until someone dragged me away.”
This comes only after great denial on his part. It’s something I’m sure that many people living with cancer experience from loved ones: the sense that people expect us to put up a hopeful front, or to accept their inability to deal with us as cancer patients.
It’s an awful thing. And, somehow, just acknowledging that things are difficult, even dire, can be soothing at times. Sure, hope is everything to me, but its luster diminishes if it’s thrown out there wantonly by someone eager to fend off real issues.
Perhaps, not so strangely, my father is the only member of my family who feels my cancer has “hardened” me a bit. On tape, he said he felt I had grown more impatient hearing about the past, and was only interested in focusing on the present and the near future.
Everyone else, probably me the most, has seen this as one of the great cancer blessings.
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Cancer hasn’t made me any more emotional. But it certainly has taught me to be more expressive, and far more willing to lower the walls installed long ago. Maybe they went up when I was a child in a dysfunctional home, and thickened when I was a teen, or an insecure adult. It seems these barriers have always been there — but they’ve eroded under the pressure of cancer.
When you feel as though the worst thing that can happen to you is happening, it becomes time to give as much as possible to the people around you, and to accept, even demand, as much as they’re willing to offer you in return.
There’s no doubt that a big part of coping with cancer has been to learn to be a bit selfish. Many times I’ve berated myself with the notion of “if not now, when?” and “just ask for it.” And, many times, I’ve experienced the generosity of people I don’t know, and marveled when others tell me how they draw inspiration from my willingness to share my feelings.
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Yet, I have to look no further than my family, or just listen to the experiences of the people in my support group, to see just how emotionally ravaging cancer can be, especially to those who are close to us patients.
It’s never more evident than when I have to deliver bad news.
Each time it gets harder for me, because it’s impossible not to sense that they may be losing hope, and even the smallest hint that the people around me might be losing hope is devastating.
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I’m always amazed when I meet people who are willing to deal with their cancer alone. I’ve met plenty who have. It seems a courageous and Herculean task to try to deal with such a terrible thing in solitude.
To me, solitude means trying to deal with cancer without being around other people with cancer.
There are just too many feelings, fears and frustrations to ever share with friends — no matter how intimate or understanding they are — or family.
Even if you could spread your thoughts and fears and hopes around, so as not to overburden any one person, no one would understand what you really meant, or be able to say anything of real comfort.
It isn’t their shortcoming. It’s just that they haven’t been here.
Still, emotional support is vital for survival. Two years ago, even though I was a big believer in the process of therapy and personal growth, it was only at the insistence of a close friend, himself a cancer survivor, that I went to the Wellness Community, a nonprofit support group dedicated to providing emotional support for cancer patients and their families.
It’s hard for me to share anything before a group, but I went anyway because I was afraid to leave unused a tool that might aid my struggle to survive my cancer.
I also went because I thought of it as a treatment, like taking a medicine, and it was something I just had to make a part of my cancer journey.
I still feel that way.
The Wellness Community, which also offers activities such as relaxation and yoga and counseling, is free and — in a cancer patient’s world of complex insurance issues, doctor’s-office hassles and the like — is like a gift from some invisible and caring community spirit.
In practice, for me and the 4,000 other people who participate in Wellness Community activities around the country each week, it means time in a room in an office suite or house, often stuffed with donated furniture and stuffy air, just being with each other.
What we talk about runs the gamut from treatments to doctors, to our latest tests and our latest nightmares.
We talk about pain and death, and how we can’t talk about that at home or at work. There’s always a well-stocked box of tissues to mop the tears. Sometimes we talk about someone making the decision to let go and die.
There’s no denying that there are many things I’ve said, heard and realized in my meetings, with people who but for those two hours a week, are strangers to me.
Sometimes I feel that, even if we just sat for a few hours together in silence, many of the stressful cancer emotions that build up inside me each week would silently seep out, as if I were soaking in a bathtub, and when I got home I’d be cleaner and healthier.
It’s my weekly “emotional treatment,” and for two years it’s been vital to getting me through.
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I had surgery again April 12. Though I thought it would be routine, it turned out to be another surreal side trip along my cancer journey.
I thought I knew just what to expect. But, from the anesthesiologist threading a line into the wrong blood vessel and leaving lots of blood and ugly marks behind, to the length of the operation — eight hours — everything was a surprise.
I awoke in a bandage that felt like a turban wound too tight and in a terrible mental fog that lasted for more than a day. And I was able to move my toes and fingers and limbs in a coordinated way, something I was warned might not happen. And my surgeon, Dr. Hoi Sang U, was pleased; he took all the tumor he could see and then some.
The day after I got home, I was able to take my dog Beasley for a walk. And I’m continuing to push to do more and more each day.
Recovery is grueling and too slow — and much easier, I think, on me than my family.
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I think my mom and I both sense that my life with cancer has moved into a more urgent phase. She said recently on tape:
“Before the tumor came back I didn’t feel that I was going through what other people were going through and I used to feel (when I’d hear about relatively young people suffering through really serious obstacles) that I just couldn’t bear it if my son had to go through those things, I would kill myself.
“But I’ve learned that you just never know how much you can bear. I’m finding out more and more. (Your cancer) has shown me the strength of people, the wonderful, caring concern that people can have for each other.”
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In the last week or two, complications from my surgery put me back in the hospital, where I’ve experienced moments of excruciating pain and fear. I’ve thought to myself, in the dark of the night, that I can’t bear this, that this must be the way the “downward spiral” toward acceptance and giving up begins.
And then, the sun comes up and pain lessens and, somehow, it seems as if things — like me — might get better.
SILVERN went home three days after surgery but has had to return to the hospital due to surgical complications. Since his articles first appeared, he’s received numerous notes and letters of encouragement, all of which he’s read and keeps in a box under his bed.
Editor’s note: In March 1994, education reporter Drew Silvern was diagnosed with brain cancer. After undergoing surgery, radiation and nearly a year of chemotherapy, he thought he was cancer-free. In December, the tumor returned. This is one in an occasional series on living with cancer.
Reproduced with permission from the San Diego Union-Tribune.