Phyllis Solomon’s interview with Sylvia Dyck
Phyllis Solomon’s interview with Sylvia Dyck on June 24, 2012. Printed with full permission from Victor Dyck, Sylvia’s husband and love of her life. Sylvia wanted this published, in her own words without any changes, so other cancer patients perhaps will not feel as alone with their feelings after reading this, will perhaps feel inspired in some way personal to them, and to know, whatever they are feeling, it is okay to feel, whatever it is.
Living with Adenocystic Carcinoma
Syliva: I live a very strange life. Yes, it’s been 9 years with the cancer. And in the last 1-1/2 years it’s moved 3 times. I’ve had it 9 years and physicians call this cancer a ‘bad actor.’ So I’ve always kept up with all the pain I have, with all the tiredness and sleepiness that I have, and absolute depression that now requires me to take anti-depressants. I always want to look good…
Phyllis: Syl, you do look good! You’re beautiful, you still glow from within.
Sylvia: It’s always a thing to look good and I feel, my gut feeling is it’s coming to an end and where the cancer is located now, it won’t take long, you know, before it’s going to go to a place that will be dangerous.
Phyllis: Where has it traveled to?
Sylvia: It’s very complicated. The cancer is in the temperol bone and now it’s in my skull and in the dura, which protects the brain. So the dura is a big round thing, it’s thick, and it seems that the cancer… well I feel like my brain is Afganistan and you can’t find where the next terrorist is, and it eats on nerves, it’s called adenocystic carcinoma. So you know, I’ve been through so much, I just found out that I needed to know how I’m going to die, the fashion in which I’m going to die. I was hoping if I go into a coma, I really felt this Phyllis, if I was going into a coma, I would want to have a long coma, so that people could come to visit, I could hear them, feel the presence of people, but I think I’m going to go fast. Like it’ll be a fast coma, which I’m very unhappy with. I complained to the doctor, can’t you make this a longer coma? And he of course laughed at me, and from there I go to talking about the funeral service and what I want. I want to have big drama, I want a lot of people at my funeral, I want to have people talk and say things about me that my kids will be proud of and I want to wear make-up, I want to have my face shown. But the after-party is the thing that is driving me crazy. You know, usually the tendency for Jewish people is to have deli. I don’t want deli. I want Thai food, and sushi. So now what keeps me going, and this is black humor, I think black humor is my survival. (I hand Syl tissues because the cereal she’s eating is dripping all over her chin and spilling on her clothes.) She laughs and says I never know what is coming out of me. People in the supermarket hand me tissues because I never know when my nose is running and this is a way of denying, by not carrying tissues. So I have begun to realize my way of denying, I am not afraid, it is so interesting, before this became serious I was able to write, but now I can’t write about what it feels like. I need someone else to do it. So we had the tissues, and my mouth runs, people have to wipe my mouth, my eye runs and I come totally unprepared to most situations, and tell me that is not denial? I ask doctors many questions, they tell me the answers I hear what they are saying, then for 2 days I go into a stupor, a total stupor of crying nonstop, and then the stupor ends and I start with my black humor.
Phyllis: You have this tool to bring you back.
Sylvia: I still don’t believe, after all this time, that I couldn’t fight the cancer. This is the first thing in my life I could not beat. I’ve had other issues, and I can’t beat this, I can’t kill this. So, again, I’m in denial. You know I went to the support group and I thought that was the only place I could speak. I thought people couldn’t understand me outside of the group. I tell people I have a speech impediment before I talk to them, but I didn’t have to do that with the support group. I don’t come now because I’m terrified of getting a seizure. And Vic is too busy to take me and it’s a very long drive. I have hospice and hospice is amazing.
Phyllis: Why do you have hospice now?
Sylvia: Because it’s incurable, there’s nothing I can take to take the cancer away, and I’m in a lot of pain and hospice helps me out with medicine and I find it very comforting knowing I could reach them at any time and they will come. And I sleep a lot. I went through a period of sleeping all the time. I have hospice because I’m very tired. Sometimes I can’t get up and get myself a cup of tea. And yet the times I feel better, I put on my makeup and go outside and do what I have to do.
So I’ve learned to live while dying. And I really live. I also have a grandchild living with me. We have guardianship of a 12-year old, and when she needs to do homework, I can’t do the homework with her, help her. One – say tomorrow it will get better. You always have to say it is going to get better. I believe in talking to myself, looking in the mirror in the bathroom, and saying ‘Okay Sylvia, you can walk, you can move your hands, you have to get outside today.’ And dying is a very lonely proposition. It is so lonely. It is so lonely when the doctor says and looks at me and he says ‘well, I can’t give you the time it’s going to be, but it’s going to happen.’ I’m not an alternative medicine person, but I did a trial, and it didn’t work. I went to Chicago. I did a trial in Santa Monica. That didn’t work either.
I never know what the day is going to be like, and no one knows how weird it is to know you are so close to death. I’m going to miss everything – my trees, my flowers, my husband, my daughter, my granddaughter, my flowers… and then something happens to me and I just wake up. I was born with a sense of, I call it, I was born with a lining that fights being down, that fights losing, I can’t lose. I can’t give up on myself, I just can’t. Sometimes I feel okay, and I think how can they say I have cancer and I’m going to die, I mean, that can’t be. And the pain sometimes is so severe that it feels like my face is being electrocuted because all the nerves are being attacked.
(Sylvia is still eating her cereal). I look forward to eating cereal like another person looks forward to eating French fries. I look at all the wrinkles on my face, and I want to have a facelift. In the middle of everything, of all this, I want to have a facelift! I go to the dentist, no one can believe that I’m this sick. I mean, none of the doctors can believe I am this sick and carry on the way I do. I don’t know what else to do. Do people just lay down and frigging die? I can’t do that! And then the reality of dying is you lose pieces of yourself. I recognize the pieces that I’m losing of myself.
Phyllis: What pieces are you losing?
Sylvia: The social aspect. I don’t feel like socializing the way I used to. One day I was lying in bed, and I literally saw the left side of me leave me and fly away through the window. I can’t cook anymore. I was the most amazing cook. I almost wanted to open up a restaurant. I am a gourmet cook. And I lost that. That is the first thing that left me, was cooking. I’m getting anxious talking about this. But I’ll keep talking, don’t worry.
Phyllis: It’s okay, we can stop any time Syl.
Sylvia: I don’t think I feel sorry for myself. The greatest gift anyone can give me, are good stories. Stories of other peoples’ lives are so interesting to me, that it is a gift. When people come to the house they know they have to have a good story. Stories keep me going.
Phyllis: It keeps you involved with the outside world.
Sylvia: Yes, totally involved with the outside world. My curiosity is insatiable. It always has been. I will never lose that, even though I’m losing parts of myself. I don’t care that my car is dirty! I don’t entertain, this is a big loss. And even though I am sure I could do it, I don’t want to do it. It’s Sylvia of the past. I like to cause trouble. I don’t know what that means, but I like to instigate, you know, funny stuff. Everything is around humor. My humor is my best friend. My humor and my sense of wanting to know other people. That is why I was good at what I did.
Phyllis: You were a psychotherapist right?
Sylvia: Well I was a behaviorist, specializing in fear, and on television once, I said having anxiety is worse than having cancer. That was televised. I said that on ABC, when I first got into the business. And anxiety is much better than cancer now.
I’m going to be the fattest person at my funeral because my appetite hasn’t gone away. I keep eating cereal. And why do people have to say, oh you sound so good, you must really be feeling good? I hate it. They should not say it to people who have this disease. Or, oh, you look so good today – is the cancer gone?
Phyllis: People’s denial, and sense fear or their own mortality makes them say stupid things.
Sylvia: Phyllis, were you social before your entire cancer thing?
Phyllis: Yes, very. It’s different now, very different.
Sylvia: Are you afraid of dying?
Phyllis: Yes, sometimes I am, but sometimes I would welcome it because of how my life is now, very isolating much of the time, punctuated by some nice times with friends or family.
Sylvia: Yes, that’s how I feel too. I still socialize, but I don’t enjoy it, I lost something in my personality that doesn’t allow me to be the way I used to be. I lost me. I find myself getting bored with people. I’d rather be alone. Interesting psychological piece, I never drank alcohol until about 3 years ago when the diagnosis became really nasty, because I was afraid of losing control, so I never took drugs or drank alcohol. Now I drink alcohol. Phyllis, can you drink alcohol?
Phyllis: Well, alcohol converts to sugar, right Syl? And cancer loves sugar, it thrives in those damn sugar cells, so I only have a drink, a martini or glass of Cabernet 3-4x a year now max. I don’t know, maybe I’d be happier if I did drink more often…
Sylvia: I really believe in the medicine. The anti-depressants. They really help. When I think about dying, I think about having an apartment in Manhattan, over the Hudson River, to think that I have a place to live after I die, it makes me feel better. And in the summer time I want to live in the Hamptons. Sometimes I need these stories to get me through a day, or an hour. Because to think of lying in the ground, that is just shitty.
Phyllis: Our body lies in the ground, but our spirit, who knows?
Sylvia: I love my spirit, but I hate my depression. I did a little bucket list thing. In one day I found my daughter’s biological family. My kids are adopted. I have two kids. I have a son, and my daughter is wonderful. I decided I was very worried about her, and I wanted to see her family that she came from. I went on FB and I put in, I just happened to remember her name, that the adoption agency told us so long ago, and in one day, I found her family, so that was a good thing that I did. People can’t be selfish. Now I am just babbling.
Phyllis: Go ahead! I love to hear you talk. And this is all important Syl.
Sylvia: Yeah, I like babbling. I think being selfish is the worst thing a person can be. I have such strong feelings about compassion and selfishness… Sylvia stops talking, is lost in thought for a minute or so….
Phyllis: Tell me more.
Sylvia: To me, you know, I was raised in a ghetto, very poor, didn’t have a bed, and I learned from my parent’s how to be kind. My mother would watch the children of the maids. We lived in the ghetto so there were a lot of maids. So my mother would watch their children so they could go to work and my father helped anyone that needed help. I was raised with kindness and when I do something that is critical or not kind, I have a big problem with that.
Phyllis: With yourself?
Sylvia: Yea, I feel such guilt, like when I think I wasn’t a good enough mother. That’s my essence, of who I am, is all about being truthful and being as kind as I could be, and even though I have this fucking uncontrollable cancer, I still think there are worse things that can happen.
Phyllis: I think so too. At least we can tell our story, and put this out in the world, we have a chance, to let others know they’re not alone, and that it’s okay to feel like this sometimes, but to keep fighting, somehow.
Sylvia: It’s very lonely. You are born alone and you die alone. It is such a weird fear – I’m actually so afraid of how it’s going to happen. I don’t want to be paralyzed. I have a terrible fear of paralysis, worse than death. That would be worse than death. I was run over by a trolley car when I was 7 years old in Brooklyn. My heel got caught in a trolly car track and he couldn’t stop and he kept rolling me down the street. The doctor told my mother I’d never walk again after the removal of the cast. They gave me crutches, and I have a learning problem with them, and I didn’t know how to use them, so I put them down, and I made myself walk. And that’s how I walk.
But I ultimately think I lost my kidney due to that accident. It was removed when I was 19, and I think the accident, which was on the left side, had something to do with it, that’s kinda young to lose a kidney. And the doctor said I couldn’t have children, so hello adoption agency, it’s Sylvia Brown. Brown was my last name at the time. You can’t tell me no, or that I can’t do something. You can’t say that isn’t going to happen, or you can’t do something, it’s just ugggghh.
Phyllis: I feel the same way. I was brought up with the same attitude. My philosophy is if a door closes, a window opens. I just have to look for it, see it.
Sylvia: Right, you have to look for another way. Have to always find a way out of a bad situation and you see with cancer, you are G-d-damned trapped, but I always think that my mind can take the cancer away. And I can’t fly now, that is the worst thing. You know, my ear will get clogged, and the cancer is in my ear, in the mastoid, and the pressure can cause terrible discomfort, and it could, the pressure could also set off a clot maybe.
Phyllis: When was the last time you traveled and where?
Sylvia: We were in Asia, I love to travel. I love adventure. I love dangerous things. And I can’t have excitement like that anymore. But of course I can. At first you say, oh I can’t do this or I can’t do that, but if you find the window or door, you have to find the answer through there, you have to find a way out – take a train or a bus for the traveling and get into trouble. But you can’t go overseas. And when I’m really feeling sorry for myself, you know, you just make due. You know what just happened Phyllis, as we are talking, I am feeling comfortable to windows opening to other means of transportation. I’ve been on helicoptors and planes, and I love boats, but then you worry, then I could start worrying I’ll be far from home, if I take a train somewhere, will I have to be buried here, you worry about stupid things like that. I could have a stroke, or a seizure, it worries me. Do you know I’m losing my ability to find words??
Phyllis: I understand. Believe me. It’s been happening to me ever since the chemo and radiation.
Sylvia: So you know, I guess, I am very happy though, at the end of my life, that I found someone that really loves me, and I really love him. We’ve been married 14 years. That is really being lucky. So you know, at 72 now, how lucky is that? I mean can you imagine I would feel very sad never feeling really loved. I know my parents loved me, but I know I wasn’t the daughter they wanted so I didn’t feel that unconditional love, like I feel with Victor.
Sylvia became tired and that was the end of our interview.
She wanted to talk some more another time, but we were never able to meet in person again for this. Our dear beautiful, kind, sweet and sassy Sylvia, with the most generous and compassionate loving soul, passed away on July 25, 2013. She’s out of her debilitating pain now, and somehow I know, she is smiling down on those she knew (and probably some she didn’t) continuing to spread her strength, love, joy, feistiness and humor as always. Sylvia has my continued love, respect, and admiration and continues to spur me on to be the best I can be and do the most I can do. We hope this inspires you too!