UNION-TRIBUNE STAFF WRITER
In this final chapter, Drew described the final weeks of his life. He introduced a new girlfriend, who helped him prepare for death. By now, with failing eyesight and hearing, he was unable to do many things he once took for granted, such as reading. He celebrated his 37th birthday, then said his goodbyes.
The commode arrived this morning, wrapped in plastic; the new TV and VCR (bought by friends at work) came last night.
That’s what my life with cancer, and my death, are like. One moment the focus is humiliation (commode); the next it’s the concern, kindness and generosity of friends, colleagues, relatives and strangers.
When I was diagnosed with brain cancer in 1994, I was terrified that I had been given a death sentence, yet was confident I’d get a reprieve. I was only 34, very healthy, and didn’t deserve a tragic death. I was innocent.
When my tumor recurred in the fall of 1995 my terror grew, and the odds of my cure shrank. I still felt a strong will to live. Treatment, luck and prayer would help me survive. I thought the same thing when I had a second surgery in April of last year. Even when the cancer came roaring back after the operation, there were still a number of treatment options.
I’ve been terrified by the thought of dying young, ever since I found out I had cancer. For the most part, my core belief — which allowed me to get on with my life — was that I might have a close shave, but would live for five, 10 or 20 years.
I know I’m dying.
People don’t know how quickly you get marginalized once you’re in a wheelchair. My girlfriend, Beverley Koseff, and I were at the Hotel Del this weekend, and I felt like such a little child. I couldn’t hear a thing, and everything was a blur. I could smell the ocean, but couldn’t get to the sand.
Still, it was wonderful, even if it was a grueling outing from the second floor; just a $1,000 little weekend jaunt.
One of the notable things to me was how easily people moved around, just pushing chairs back from the table, pivoting and standing.
Bev was oblivious to that, as well as to how impossible that sort of thing was for me, or what an ordeal it would be for me, or how humiliated I already had been that morning because the restroom in the Hotel Del’s lobby was lower than most, and I had to call my brother to help me off the toilet. And this weekend I had to start asking for help cutting food. The left hand was just moving too much to be reliable.
So, back at the ranch: Vision’s worse than ever; tremors and hearing, too.
Big news is Bev, and how we’re more or less in the final minutes of our romance, of the minutes of my life.
You can tell people all day long why you can’t have a romantic relationship if you have cancer, and they say they understand. But they don’t. No way. I don’t have energy, or the zest. But more directly, it’s just not a priority for me right now. Living and dying are.
Had a sponge bath today out on the veranda. It was sweet.
Feels as if today I am definitely close to the end. Can barely make out the 24-point type, and this paragraph is taking about half an hour to write.
The saddest thing is how angry my hunger attacks can make me at the people who work the hardest to make me the most comfortable.
In the end, I just don’t think you really can make people understand what it’s like to die of brain cancer. You try so hard to do so much, and hope and pray and even fight, but it still just goes one day at a time.
Bev says she thinks I’m holding on to some profound anger — something with Mom — and that I can’t let go and die peacefully until I resolve that.
She feels that the times I wake up in conversation with someone who’s not there are a sign that I’m making forays into the spirit world. I know, sounds like a lot of hokum, but . . . It’s so strange that it sounds about right.
The big news in my world revolves around such themes as urinals, bedpans and a new contraption to make it easier to get from shower to wheelchair and wheelchair to bed. That’s where my life as a cancer person has brought me. I had promised myself that I would be dead now. But I just can’t let go.
Yep, that’s what I’ve come to: late-night discussions about whether to stop bothering someone to help me into the chair, or turning on the lights and risking a solo move even though I’ve had a whole lot of near-falls lately. I know it’s not a valid comparison, but sometimes late at night, I feel like an aircraft-carrier pilot trying to make a difficult landing.
Talked to Mom about my need to let go of living. It’s just too difficult these last few days wondering what changes I’ll have to contend with and how.
Today it was vision, and waking up with the realization that things were even worse than yesterday. But for a small amount of familiar objects and shapes, and colors, I can’t see.
What will it be like tomorrow, and the next day?
Eyesight worse — actually, everything is worse.
Eric helped me with my afternoon shower. Strange to have one’s brother help you into and out of the shower, and to soap your back for you and hold you upright when it’s time to stand and soap off your private parts. But it was a generous act on his part.
Talked to my dad today. He finally sounds, for a minute, as if he’s starting to understand what’s happening. At the same time, though, he’s asking me if I’ve heard of a new drug that one of his stock-market newsletters is touting. The only problem with that is, it’s a drug for diabetes, not brain cancer. It was almost overwhelming to me that he could focus on my diabetes, not my cancer.
Thinking about how much ignorance it showed was infuriating. After three years, he still doesn’t get it — he was doing his denial thing. It’s as if he just wants to ignore the cancer and make a deal to focus on the more treatable diabetes. Just put it on the shelf, drop it for a while. That he didn’t know the exact name of my tumor, and had only now — when I’m on death’s door — taken an interest in researching my cancer infuriated me.
But the sincerity of his voice and his effort was so overwhelming that it was impossible to get too mad.
This was new to me — the not getting mad at my dad for such a transgression. In the past — pre-cancer days — I would rage at him and get rid of a lot of anger, both deserved and undeserved.
Now I’m more tolerant. There doesn’t seem to be any reason not to be. Everything seems so trivial. It’s not my world anymore. I can’t see or hear my way anymore. It’s time to get on with my cancer journey.
I asked my mom this morning if she would be OK when I died. I thought it was the perfect time to ask. She was going to see the opening of a friend’s play in Texas. Some of her longtime writer friends had gifted her an airline ticket. As soon as I asked, she announced she wasn’t going. She was worried something would happen to me while she was gone.
It took a lot of work to persuade her to go, that I would be all right, and that though I had no control over my condition, I had a little control over the timing or the night of my death. After an hour of going back and forth, she left for the airport.
I find myself wanting everyone who helps me to leave so they won’t be conscripted into my death march.
I had a vision last night. It was the first one. I felt I was talking to spirits whom I couldn’t see, and at the same time I could hear my girlfriend in the background. I felt that I had one foot still in my bed while the other was in another room. I don’t remember what was discussed, but the experience was very soothing. Knowing that crossing to the other side will be painless and hassle-free is a comfort.
I never believed much in the metaphysical, or in strange thoughts about the ever-after or a world of spirits and ethereal energy. But in recent months, the spiritual world has taken on a new meaning to me. It’s been a kind of convenient crutch that has allowed me to get over a continuous stream of anxiety.
I woke up this morning with less vision than yesterday. It seems as if I lose something every day. Now I can’t make out words typed in the largest font on my computer. Mostly things are a blur of color and strange shapes. It’s very “Picasso-ish.” I am afraid to go to sleep at night and have to guess what function I’ll lose the next day. I rely on my girlfriend Bev to take dictation for me.
Big night last night. Took two Vicodin pills to overcome anxiety of having to use the bedpan with Bev, instead of the wheelchair and regular toilet. I’m at the point of suffering that I promised myself I wouldn’t reach: bedpanning.
I watched “The Odyssey” on television and couldn’t ignore the line near the end when a character asks one of the gods why they make him suffer so much. I sat on my bed a long time thinking about how long I’ve been suffering and how I haven’t had a lucky break in so long. What does it take?
Bev, a pharmacist at the University of California San Diego Medical Center, tells me that my home-care nurse, Peggy Breslin, spoke to my cancer doctor, Marc Chamberlain, and his oncology nurse, Patti Kormanac, and both were “amazed” that I’m still around.
Good thing or bad, I don’t really know. Maybe I’m too good at staying alive and not good enough at dying.
My brother Eric got a new job today, and a new home. He said he prayed for both. He gave himself over to God. He said he prays every chance he gets. I’m not sure what had first priority — the house, the job or me.
My home health-care nurse, who’s like a guardian angel, drops in a couple of times a week to monitor my condition and make sure I’m as healthy and comfortable as I can be.
I asked my brother for help with my bedpan today. That is a point I never thought I would come to. Not for the last three years, three months and so many days. I’ve been declining steadily and quickly for the past two weeks, and can’t see any way how things will get better.
I’m uncomfortable constantly, and just don’t want to do it anymore. I guess I’ve reached the point of reality. I’ve given up my wheelchair and spend most of the day in bed. The bedpan and the bedside urinal are my friends and I’ve stopped trying to avoid them. They’re more humiliating than can be imagined. But they’re easy. Easy for me, though they require a lot of patience by those around me.
I am at the end of my rope. I woke up this morning feeling my usual disorientation: not able to see the end of my bed and barely able to hear.
I awoke from my nap not knowing who I was or where I was or what I was doing. It took Bev a half-hour to calm me down and explain that I wasn’t a Secret Service agent in a foreign country. I felt very much that I was a person caught between this life and the next. It was strange and frightening. I’ve never felt that way before. I’m not sure if it’s a reaction to some prescription or what many people, including metaphysical writers, describe as passing over from this world and energy state to the next.
In the end, it doesn’t matter. I am comfortable, and peaceful. I don’t want to go to bed every night and wake up in the morning and have to figure out whether I’m better or worse, what body function I’ve lost, and how hard it will be to get through the coming day and night. I don’t feel as if I’m giving up so much as I’m choosing to move on.
I comfort myself with the thought that I’m still on a journey and that the people around me will benefit from looking at things that way. I wish I could continue writing about it as if I’m in the here and now, but I don’t think that will be possible. It’s strange that, on the one hand, I’m angry I didn’t get more time to live this life and, on the other hand, that I’ve gotten enjoyment out of living and writing the last several years.
I am too tired to make much sense of my writing at this point. I am at peace and am calm about what is happening. It gives me great comfort that things are going this way. My greatest fear now is that I will not die as quickly as I imagine and most people will think that what I’ve written is all part of a hoax.
I live in dread of the night and pray that I won’t see the morning. I’m so tired of disturbing the people around me to urinate or use my bedpan. It just seems all I do is suffer and make other people do so, too, no matter what they say.
This morning, I got a new hospital bed and tray and catheter, as well as a new pain medication. It makes life so much more comfortable. I wish I had discovered it earlier. I feel much more groggy, but at this point, I would rather have grogginess than the ability to think more sharply, which only seems to fill a sense of forlorn, and how little future there appears to be when I’m comfortable. And eliminating my headache pain seems to be an exquisite luxury. I know many people will feel as if I’m a quitter, but I don’t care. Quality of life counts for a lot. It even bothers me to say that, but that’s where I am and how I feel.
I woke up at 2 or 3 a.m. wondering, and miserable that I have to go through another day. I feel as if I’m always suffering and I wonder “Why me?” much more than I ever did before. I wonder how people could bear it without all the support that I’ve had from family and friends. I’m really suffering but my body just won’t give up and let go of this life. I’m still hungry and thirsty, although I can’t swallow solid food. I’ve become the soup and yogurt man, and I’m searching for a liquid doughnut and spaghetti meatball. All I find now are different chicken-noodle soups and yogurt. It’s rather bizarre how much one’s views can change with a little misery.
I feel totally comfortable with dying now and unafraid of how it might happen. I just want to get on with the experience. Breathing and basic bodily functions seem like a paltry reward for continuing to live on the edge. Just managing to be able to breathe, see shadows and hear whispers.
Bev says I’m wheezing, but I no longer can tell. She said something this morning that I’ve been thinking about constantly during the four or six hours I’ve been awake. It’s concerning the nature of love and how differently people who are sick and dying think about the world. Three or four weeks ago, I had the capacity to consider things like love, romance and children, and now those thoughts have been blotted out by personal discomfort and pain, although I think often of friends and of people and love. And I think about people who have given so much and how ashamed I am that all I can do is express a need to them and so little else.
This has been a long journey for me and I still don’t know where it will go. I think if there’s one crossing-over that maybe is hardest for me to describe, it’s expressing my feelings one-on-one, person-to-person, in a believable way. It’s much easier talking about kindness and gratitude in a collective way than to personalize it. That is what my girlfriend may have taught me in the last several months.
Those were Drew’s final words. By Tuesday afternoon, he was unable to speak. That evening, his mother, brother and girlfriend, and his dog Beasley, gathered in his room. Candles were lighted. They listened to classical music and talked throughout the night. In the morning, Drew died.
Editor’s note: In March 1994, education reporter Drew Silvern was diagnosed with brain cancer. For more then a year in a series of Union-Tribune articles, he chronicled his life with cancer. These were his reflections in the final days of his life.
Reproduced with permission from the San Diego Union-Tribune.