‘I Want Time’

By Drew Silvern

UNION-TRIBUNE STAFF WRITER

March 20, 1997

 

Drew wanted desperately to keep writing, but his body was failing him. By January 1997, he no long had the energy to come to the newspaper’s Mission Valley office. At home, he continued to log entries in his journal. He described his days, his fears, his joys. Three years after his initial diagnosis, Drew was looking for a miracle.

 

When I began this series last year, I wrote that I didn’t know whether I was living or dying. Now I think I’m dying. Maybe not tonight. Maybe not until tomorrow. Maybe not for a couple of months. After a long time feeling confident that I would survive my brain cancer, I really don’t know now.

I was first diagnosed with a brain tumor a few months short of my 34th birthday. It came out of the blue, a headache that wouldn’t go away. At the time, the tumor was thought to be benign and I was advised that if I had it removed quickly, I would have no lasting deficits.

A week after the surgery, I found out the tumor, a medulloblastoma — more common in children and rare in adults — was malignant. Cancer. Treatable, though. After eight hours of surgery to the back of my brain, several weeks of radiation to my head and spine, and six months of chemotherapy, I was on my way to a total recovery. Or so I thought.

In late 1995, several weeks before Christmas, my cancer came back. After more chemotherapy, a second surgery in April 1996, several bad infections and more chemotherapy, I seemed to be recovering.

Then last November, when I was feeling particularly healthy, a routine MRI showed my tumor was growing again. Soon I had symptoms. They’ve worsened.

I’ve written several articles on various aspects of living with cancer. This may be one of the darker and hardest to synopsize. What I’ve tried to do is describe a few months in the life of a cancer patient who rationally or irrationally thinks he is sliding toward death.

Drew's cancer progresses.
Drew's cancer progresses.

I’m not sure how this story will end, since I’m not quite sure how this process plays out. I just know that I seem to be losing my ability to live and am deteriorating rapidly.

What follows is a collection of journal entries and observations from the last few months.

■ ■ ■

Bad news day. Thursday, Nov. 14, 1996.

A bad MRI comes out of the blue. I could tell as soon as I saw the faces of my doctor, Marc Chamberlain, my neuro-oncologist, and his oncology nurse, Patty Kormanic.

My tumor is bigger. It’s spread.

Why does it have to be this way? I feel as if I have “Death Sentence” stenciled all over me. Why don’t I have any faith right now that things will get better? Where’s the courage now? I’ve thought so much about this moment. Now it’s here and I’m completely unprepared.

I want to live, not die, and yet where do I turn?

Marc wants to go straight to another chemo drug, and more radiation, while Henry Friedman, a neuro-oncologist and neuroblastoma expert at Duke University, whom I’ve consulted during this past year, says he has a great new drug I need to try.

It all sounds like a mishmash of meaninglessness. Marc says his therapy will give me immediate relief. Henry says it will screw up my chances of getting a stem-cell transplant. Two doctors, two therapies. What do I know?

I choose chemo. I’m still hoping for a stem-cell transplant. The procedure is similar to a bone-marrow transplant. White blood cells are removed from the body and kept frozen and safe while the rest of the body is given a toxic dose of a chemo drug that kills rapidly dividing cancer cells and blood cells. After that, the white blood cells (the defenders against infection) are defrosted and reintroduced.

The only good thing today is the bliss I found by hiding beneath my covers and taking a nice fear-free nap. Then tonight I went to see the movie “Ransom” just to get my mind off things, then came home to watch a PBS special on World War I, which was a stark reminder of how many people my age and younger die and have died more gruesome deaths than I might. Someone always has it worse.

Of course, I lie to almost everyone who asks how I am and say that I feel fine and the MRI went well. I just can’t be the bearer of any more bad news. I felt obligated to share the news with Mom, (Lila Silvern); then asked her to spread it to family.

How did I, me, myself, get here?

■ ■ ■

A former member of my Wellness Community Cancer Support Group called to say a longtime member had died unexpectedly. I’m depressed. She was in the group when I joined 30 months ago, had a 10-year-old child, and though her health oscillated, I always thought she’d end up a long-term survivor.

Still no tumor symptoms for me. Yeah! Thought for the first time that I may have to come to terms with possibility that, even without symptoms, this may be the point where I need to think about my own death. I’m worried I’ll just run out of treatments, before (a drug) is found that will stop the tumor from growing.

If I think about the growth of my cancer as a journey to some bizarre, unknown place, it’s easier to fathom, and sometimes even causes me to be a bit excited and curious over what might await me.

■ ■ ■

Out-of-pocket cost of the new chemo drug is around $1,500 per week. Is this the true meaning of drug abuse?

Everyone is telling me they are praying for me, and that they know I will survive. Everyone knows I will except maybe God and me. Are we in for some big rendezvous that only we know about?

■ ■ ■

Wednesday, Nov. 27: I woke up in a fog today. Stumbled out of bed and took my walk. Unsteady. My cancer symptoms are back. I’m starting to feel as if the tumor is growing.

Drew had diabetes, a complication of the aggressive chemotherapy drugs.
 Four times a day, he tested his blood-sugar level.
Drew had diabetes, a complication of the aggressive chemotherapy drugs. Four times a day, he tested his blood-sugar level.

I’m scared.

I guess this would be the time to go, before the crush of the holiday season.

At my Wellness Community meeting last night, a new member was talking about cancer, passion, romance, sex, her husband, and dressing up as a flight attendant to excite him.

Made me think how little the whole issue of sex comes up in my life now. Seems unnatural how seldom it crosses my mind. I still have the physical capabilities but some sort of mental, emotional survival program has kicked in that keeps me focused on avoiding stress or complicated emotional situations in favor of reserving all my energies for the anti-cancer campaign.

It’s embarrassing, but true. And amazing how cancer can make something that used to be so important seem so trivial. No, actually, not so amazing.

■ ■ ■

Thanksgiving came to my house. It was smaller than usual, but nicer, more intimate.

My mom was here for the weekend. I’m having her or someone here all the time to help cook and clean and watch after me. It’s humiliating.

I’m not ready to quit the fight, but I hate this feeling of no control over the physical nature of my body or my future. I’m feeling more dizzy and uncomfortable today. I’m not sure how much to tell, and to whom. Why make other people feel helpless and sad?

I’m so tired.

I have this strange premonition that I won’t live through the end of the year.

But I’m not ready to die. Not now, not yet, even though I think about it all the time and am terrified by the thought in a way I can’t describe. I have too much I need and want to do.

■ ■ ■

Tuesday, Dec. 3: The last thing I want to worry about is being rushed to the hospital in a last-minute cancer crisis. The thought of dying someplace other than my house terrifies me.

Physical therapist Laurie Rahe helped Drew with mild exercises that left him exhausted after a 30- or 40-minute session at his home.
Physical therapist Laurie Rahe helped Drew with mild exercises that left him exhausted after a 30- or 40-minute session at his home.

Below the neck, there are no problems that I know of. Am walking four miles a day and six on the weekends. Still, I’m starting to stumble a bit too much. Things are getting worse.

■ ■ ■

Thursday, Dec. 12: Woke up angry. Angry and tired.

Angry because it’s raining.

Angry because Beasley, my dog, wouldn’t get off the bed to follow me to the kitchen.

Angry that I can’t find what I want in my CD collection.

Angry that my fingers are so sore from my first guitar lesson yesterday.

I’m angry because my symptoms are worse. Because I’m dizzy. And because cancer won’t leave me alone. I’m just angry, angry, angry. And angry at me for being angry.

■ ■ ■

Monday, Dec. 16:

Whew!

I thought this weekend was it. Went to San Francisco. Could barely move or stay awake, had trouble walking. Have never had such symptoms. I had to be a preboarding person on the plane home because I was just too tired to stand in line. Having lots of trouble hearing, seeing.

Boy, do I want to avoid death, but it’s hard for me to feel it’s not happening. I liken it to one of those cheap cop shows where the victim — me — is too dumb to take the obvious escape route and is run down from behind.

I feel so strange and so unlike anything else I’ve ever felt. I feel as if I’m slowly losing control of my body. I don’t know where my body is taking me, but I’m scared.

I haven’t gotten to the stuff I need to get to in my life: the kids, the books, the teaching, the etc.’s. What’s strangest is to be out and about, listening to people talk about the trivialities of their lives while I’m wondering if I’ll still be around at the end of the day.

I want to worry again about which movie or restaurant to go to, what to buy for whom. Instead I wake up in the middle of the night with some throat congestion and am afraid I’ll choke if I go back to sleep.

It’s a bad day. I’m so tired and unsteady. I can’t get anything done. I would like to go to Los Angeles for Christmas dinner tomorrow, but can’t imagine making that drive alone, or with someone. Still, would like to ease my family’s fears. Is the effort to calm them worth my discomfort? Will wait a day to decide.

At least I was able to take a walk today.

■ ■ ■

Thursday, Dec. 26: Made it through Christmas dinner at home with part of the family and a few close friends. It was nice.

Having some headaches. That’s not a good sign. Haven’t told anyone. Able to make it through my walk, barely, and to drive to work and to stop at a coffee shop. Was difficult to do and felt as if it was probably not best for me to be driving.

But coffee, breakfast and the paper to read. The classic, simple luxury of a morning. I’ve been bargaining with God every morning. It’s a one-way sort of thing. I’ve offered a lot of concessions in exchange for a few years to do things: writing, traveling, good-deed kinds of stuff.

■ ■ ■

Friday, Dec. 27: I’ve almost made it through the dreaded month of December. My headaches are getting a bit worse. Made it through walk today. Unsteadily. It feels as if the steroids are just eating the muscles in my legs and they’re about to give way.

Deep down, I never expected to survive Christmas and the New Year. But I did.

I’m pretty out of it now. I drive the several miles it takes to get to work and back, and a few other places, but can barely walk without a walker. I’m dizzy all the time. I’m seeing double, so I can’t read and write except for an hour or two a day (by using one eye at a time). Someone is always at my house to cook and help if I fall down.

It’s kind of a miserable existence. Everything is difficult. Everything, no matter how mundane. I feel I could give up at any time. I would, I think, except I’m too much of a coward.

Someone sent me a card recently and it had an Old Testament quote on the cover: “In the beginning God created the heavens and the earth . . . and saw how good it was.” Maybe that’s why I’m sticking around. I’ve seen too much. It’s good. I want to see more.

■ ■ ■

Jan. 8, 1997: I’m at home now. I had to stop working recently. Physically, it was just too much. Emotionally, disability is much harder this time than for any of my previous surgeries or infections. It felt as if I was giving up ground to my cancer, mileage that I may not make up.

Until Spring 1997, Drew had radiation treatments twice daily at Green Hospital at Scripps Clinic in La Jolla. They failed to stop the brain tumor's growth. Here, a technician readied the machine called a cyclotron, for the procedure.
Until Spring 1997, Drew had radiation treatments twice daily at Green Hospital at Scripps Clinic in La Jolla. They failed to stop the brain tumor's growth. Here, a technician readied the machine called a cyclotron, for the procedure.

It’s morning. I can still give thanks that there’s sun and light today. I have breath. People don’t appreciate enough the simple ability to breathe.

When I finally make it up each morning from my night of fitful sleep, I feel as if I’ve gained a purchase on a new day, like a handhold on a cliff, and as long as I don’t let go, I’ll at least make it to dusk or my next nap. That still matters to me.

Everything is hard and seems to be getting harder. I’m not in pain, and haven’t been. I have become severely handicapped, though. The combination of my brain tumor, steroids and steroid-induced diabetes has left me without balance, strength or clear vision. I can barely hear anything. I feel as if I’m locked in a body that’s wasting away. I’m stuck.

I look and feel like a bag of bones floating on two swollen bags of water, carrying around a big swollen belly full of important stuff. I have an extra chin that I don’t need and don’t know what to do with.

Emotionally, I think I’m doing relatively OK. I’m afraid of death. But I’ve read a lot of strange books on dying and the process of it, and what might happen with the expiration of the body, of this life. Weird stuff I used to scoff at. I wonder, if there’s a continuum between life and death, how do you know where the edge between the two is?

I want time. I want back the seconds and minutes I’ve wasted for 36 years. Desperation. Why me? Why now? Please, just a little more time.

I’ll huff and puff my way to radiation oncology, walking like a tightrope artist on the high wire, balancing against the fall. The cyclotron will buzz and jammer, then I’ll go home to sleep for most of the day, glad to be alive, and frustrated that I can’t read.

I go to oncology twice a day, once in the morning, once in the afternoon. The treatments aren’t bad, but getting into and out of the car and hospital and onto and off the cyclotron is so exhausting that every day feels as if it will be the day I need the wheelchair, but not yet.

Getting dressed has become an exhausting grind. Even putting on a T-shirt and gym shorts leaves me short of breath. Everything is hard. Very hard.

Cancer fatigue isn’t like regular tiredness, at least not for me. I can’t sleep it off. Every action, from getting dressed to going to the bathroom, is completely energy-depleting.

This afternoon I’ll have radiation. Is it making a difference? I don’t know. I’m still here. How much have I lost in the last three weeks? My God, it’s been a lot. My head is so full, my hearing so bad. I can’t really walk or see. But I’m still here. I was so sure I would be gone.

Today, I took a look at safety bars for the bathtub and bathroom. I’m not even 37 years old and I need safety bars and a walker. Humiliation? I think that qualifies, not to include the fact that I’m a bit humbled by the worry that if I put my full 227 pounds on one of them they might pull out of the wall.

Spent some time last night reading a new book: the “Tibetan Book of Living and Dying.”

The basic precept is that there’s the time you spend living in a physical body, the event of dying, then of death and transformation from your body to energy, then back again, hopefully at a higher level.

There’s also a great deal of emphasis put on the impermanence of this life, that everything is momentary, no matter how much you try to protect against that, and that even the oldest, wisest, healthiest people only live but 100 years, so if they don’t prepare for death during their life, they waste time.

■ ■ ■

Early February:

There’s no such thing as planning when you have cancer. Dinner with someone four days from now is like making a plan for eternity on a distant continent. For my mom, it’s just planning what to cook for a few days away. We’re in two different worlds. She feels as if I’m living in one, while I feel as if I’m dying in another.

Drew greeted his doctor, Vincent Massullo, as his mom, Lila looked on from the doorway.
Drew greeted his doctor, Vincent Massullo, as his mom, Lila looked on from the doorway.

My Tibetan book on living and dying talks about the two kinds of laziness. The Eastern version: not doing enough in this life because there will be other lives or incarnations to live regardless; and the Western version: doing too much, focusing too much on wealth and position at the expense of contemplation.

I’ve done both. Only now do I see the mistake, and the similarity of both brands. How imperfect am I? Very.

It’s another day and I’m still here. I can see even less clearly this morning. My walking is worse. I’m using a walker now. It steadies me during the walk in and out of the hospital, the only place I go these days.

I think my physical body has betrayed me a bit after giving me a good ride. I’ve been blessed with great success as a small kid, lots of pain and suffering as a teen-ager and college type, and then more fun and success as a young adult. No complaints, just lots of frustration that I might not get to do more.

Of course, even now, when I can barely walk on my own, I still hope that I’ll hit some meditative note, or become the object of some saint, the miracle-cure boy who goes into remission with his last breath, and then spends the next 70 years of his life barefoot and groveling, helping the downtrodden and giving uplifting speeches to the self-centered and selfish about the true meaning of life.

I could do it. I wouldn’t mind living the rest of my days with a smile, wearing sandals, with no money in my pocket, telling people that the way to happiness was to get cancer, and appreciate how nice it is to awaken each morning without being terrified you might fall back to sleep and die.

■ ■ ■

Last night was very strange. First, Beasley insisted on sleeping so close and up near my head, instead of at the foot of the bed, where he usually is. Then after just two hours, he was whimpering to leave — he wouldn’t calm down. He’s never done that.

Then after he left, I heard some loud, vibrating sounds that woke me up. Were they the indescribable vibrations discussed in all the death books? They sounded like ship horns. No one else heard them. Is this all an omen? A sign, good or bad?

The big push is on from the family — I can feel it. The don’t-leave-us, don’t-let-go, do-whatever-it-takes-to-stay-here push. We’ll help you. We’ll feed you and bathe you and humor you.

I know I still have fight, or wits, or cunning for sticking around for a few days, weeks, months, hours. After that, I don’t know.

■ ■ ■

It’s March.

I realized the subject of the future is a presumptuous one for cancer patients. For me, the future is tomorrow morning.

I tried to discuss the subject of hospice care with my mom today. I’ve been thinking about it a great deal, and my desire to avoid the hospital at all costs, as well as any family hysterics or disorganization should I progressively decline.

She became quite upset. Tears. What does one do? It needs to be talked about. I had about as much success with my dad.

I wish I had the energy to make it to my Wellness Community group, where I know I could talk about this without everyone cringing. People, loved ones, don’t realize there are different kinds of support.

There’s the rah-rah, don’t-give-up-the-fight encouragement that seems to surround me. Everyone seems positively certain I’ll survive. Or, maybe just afraid to let the thought escape into the wild.

Drew received a frame with photos from children at Logan Heights Elementary School in San Diego.
Drew received a frame with photos from children at Logan Heights Elementary School in San Diego.

A few friends are curious enough to understand that I need to talk about the potential of death. It’s a reality I’m more or less alone with that I can’t ignore.

People are constantly telling me I shouldn’t feel like a burden, especially to my family. It’s impossible not to. When I move, or snore or burp, it’s as if the Secret Service swings into action to make sure I haven’t fallen.

But I can see the strain. We talk about movies. Diabetes, the level of glucose in my blood. Not just cancer or death. People come over innocently for lunch, then stay several hours while my mom or brother, Eric, leaves for a few hours of life in the real world. I’m never left alone without a baby sitter. They’re afraid I’ll fall and hurt myself.

I feel myself a big drag on those around me, though I’m pretty sure they don’t feel that way. I wonder if some part of them feels as if their lives have been interrupted and they’re eager for the issue of the sick child and brother (to be resolved) to get on with things.

I’ve noticed in recent days that I’m being treated more and more like a blind, deaf, senile relative. People talk around me, as if I’m not really there.

In some ways that’s true. It’s a strange world of parallel universes. My mom is thinking about the sugar and salt content of food, my brother about what basketball game is on, and me about my next breath. Actually, we’re all probably thinking about the same thing, my cancer, and just don’t want to mention it.

The only pleasurable things left in my life right now are massages I get twice a week and the rubbing of my always-swollen feet.

■ ■ ■

My brother recently asked one of my doctors over the phone what my worsening symptoms meant. That I was dying, said the doctor, and that he didn’t believe there were any treatments left that might be effective against my cancer.

I believe it, given the way I’m feeling. But the doctor’s opinion immediately filled me with a sense that nothing really matters. In a few weeks or months, everything will be gone, so why bother with anything now?

■ ■ ■

I’m not sure how to end this story. I’m still around, but not doing very well. Last night, I had terrible nightmares and woke up screaming, though I don’t remember what they were. I spent an hour sitting on the side of my bed, afraid to lie back down.

I had another bad MRI recently. I expected it. My worsening symptoms told me it would be so. I haven’t given up, though I’ve thought about it. I’ve wondered if it makes a difference what I do, other than to try and keep my feet shuffling one day at a time.

Drew finished an intense course of radiation treatments a few weeks ago that appears to have been unsuccessful in reducing the size of his tumor. He spends all his time at home. He sleeps much of the day. When able, he writes fiction, whose characters are based on family members. He’s still searching for peace and quiet and the drug that will stop the tumor’s growth. Living one day at a time.

 

Editor’s note: In March 1994, education reporter Drew Silvern was diagnosed with brain cancer. This is one installment in his occasional series on living with cancer. The last update was in November, when he wrote about his bar mitzvah and spiritual journey.

 

Reproduced with permission from the San Diego Union-Tribune.