Unexpected Journeys

Debra

Well, in my experience with cancer the most extraordinary thing that’s happened to me was to get in touch with the strength I have… The strength I’ve found inside of me has been to research, face the unknown medically, try to understand the worst that can happen, get second opinions, push the doctors for information. You have to be so patient-active because the doctors are just too busy, they can’t keep track. And to use my creativity for my own medical well-being. Oh my god, when I discovered art therapy it was like – oh my god! The little kid in me is just so joyous when she gets her hands into fingerpaints or any kind of painting or art. My little kid just goes bonkers, I mean, you can’t stop me! 

I guess I grew up kind of vain, I thought looking good was really, really important. And it is, but nobody’s rejected me when I was bald and looking my worst. Even when I was way overweight and all bloated from all the drugs and the cortisone and all that, nobody rejected me and I could still attract new friends. The important thing to remember is that people respond to you as you see yourself. If you forget how you look, and you’re animated and you’re in a crowd and you’re really enjoying yourself, people see the inner you that comes out. They don’t care how you look, it doesn’t matter. It’s how you project yourself that people are attracted to. I’ve learned that.

There’s these groups that… believe you create disease with your thoughts and your actions, and that if you can create it, you can un-create it… Well, there’s a lot the mind can do, but I don’t believe we create disease. I don’t believe I created the cancer… And that is the cruelest, cruelest, most disheartening discussion to have with a cancer patient.

If you were to ask me what if my cancer went into complete remission, what would I do – I haven’t a clue… I’m living much more in the present than I ever have… By the same token, I don’t nearly go back to my history, I don’t look back as much as I used to. I live really very much in the present. And I think it’s made me a happier person. And that’s been totally because of the cancer. 

I’m hoping there’s a chance of coming back as a spirit, somehow, somewhere. 

Because I think life can be a lot of fun. 

Hazel

If you’ve just been diagnosed with cancer… just get you some hugs, get a lot of hugs… If you can get some hugs and them first, that gives you the strength to go on and start this fight. You may cry, but if you get enough hugs, enough so that laughter comes in, they tell us that makes the endorphins change. And when the endorphins change, they start fighting the cancer cells before you even get started… So my body goes to acting silly – get me a funny video, movie, something, it’s time to laugh, it’s time to get them to change their directions! Mostly everybody, people who never laughed before – make them laugh, their endorphins change right before your eyes.

Most of the time, most of us get left alone… My boyfriend left me. “You didn’t die”, that’s what he told me – I didn’t die. He was 72 years old, can you imagine that? [Big laugh.] Said, “Cause you was supposed to die, girl. You ain’t gonna die, might as well leave you and go get me another one!” 

Everybody that really knows me, they support me, they support me whether I talk to them, whether we see each other or not… The friends I really love, we can just hold hands. Just look at each other and giggle… We don’t have to say one word. It’s amazing! But when we do, we never offend each other, regardless, if one of us makes a mistake and cusses – which I’m usually the one – it’s okay. 

I grew up where there was talk of racism all the time… Now I just don’t see things that way anymore… Some of my prejudices have changed since cancer. Because cancer somehow made everything colorless. It’s not colorblind, it’s color-less…. We have a group, it’s a writing group with cancer people, and in that group there’s so many different cultures … So, I’m beginning to see things, since cancer, as different… Everybody’s okay.

Cancer made me look at everything that happens to me in life different. Everything. I changed my views on death because I’m not afraid anymore. Patience – hoowee! – taught me how to be patient, how to see things a different way. 

Cancer teaches you, if you listen. And most of us start listening.

Helen

My first feeling was that I didn’t believe it, but since I had it… I had the breast taken off and that was it, and I could forget about it… The second time I was very angry that the cancer came back. And then I realized I had it, and I have to accept it. And the other thing was there’s nothing I can do about it. And that’s what really bothered me, because if I have problems I usually try to figure out some way of solving them, and there’s no predictability about cancer at all. And so I had to change my attitude.

I also realized that a lot of things that I used to be very fussy about were really not important at all… The important thing was that I was alive, and I was with people that I loved, and having communication with people. And that mattered most of all. And so I think I gained a great deal. I used to be a real fusspot! 

What I’ve learned from having cancer I think mostly is to be more tolerant of people. To take their aches and pains more seriously – it might not be much, but it is to them. And so in that sense I think I’ve grown. Cancer hits people from all walks of life, all walks, all ages, it is completely indiscriminate in who it hits. I just feel badly for the children I see in the hospital and for the young people particularly. 

My advice to someone who’s just been diagnosed would be: don’t give up hope. That they’re coming up with new things… and since particularly they are aiming at controlling it, not with miracle drugs but with ordinary medication, I think there’s great hope that people can live quite a bit longer than they thought. 

I’m 78 years old, and I think I’ve lived a good, full life. My mother and grandmother both died in their 90s and I would love to live until then, but if it takes me tomorrow, that’s okay. There are a lot of young people like two friends of mine who were in their 50s who died, and I felt that here I’ve lived on, so I really have no regrets. 

Laura

Cancer has affected my life in the way that – it does make you stop and think about what direction and how meaningful you want it to be… Up until I was 35 I didn’t want children, and then I wanted children… With that in mind, it’s like, yeah, I still want to, but what are my chances of adopting or even doing foster care?… And if I do finally have kids, foster or adopted, am I going to be here long enough for them not to feel like they’re being abandoned again?

The one piece of advice I would suggest when a person is facing death or having to deal with it with a family member is talk about it. People are scared about death when they don’t talk about it. It’s scary, yes! It’s truly scary, to think about the unknown is more scary than the known… But the more you know, it’s not going to be painful, it’s not as scary. 

The most helpful thing in dealing with my illnesses: having wonderful doctors, getting resources for you. Not even to have to worry about whether or not that doctor is working for you or has your best interest... If you doubt your physician, find someone else, ask around. They have your life in their hands, and if you’re blasé about it or too scared, how are you going to add those years to your life if you’re scared or if you don’t inquire? 

The financial end has been my nightmare, if I didn’t have it I’d be okay. In a way, my finances are making me kill myself because co-payments, although relatively small – $10 a month – I can’t afford that $10 because right now my monthly drug co-pays are about $120… Even though they say, on the whole, being rich can’t heal you or save your life, in a way it can. It allows you to afford to try to heal yourself… I just so happen to fall through the cracks of the system.

My advice for people for the future: to live… as uncomplicated… as possible, resolving matters that you may have put off until later (like I should with my father), to put in order your financial affairs… so you can live as comfortably as you can… And if you can hire a maid, hire a maid (one day!) for that daily part, so you can focus on yourself. That self-esteem has to be there – when it’s low, it’s a little bit harder to cope with your illness. 

Rena

Cancer is a transformational experience, you never come out of it the way you went in. For me, if I’m going to get anything positive from the experience I have to grow… The devastating part is: who am I now? I don’t mean that I’m not the same person, but I’m not the same person entirely. And it’s not because of no hair, but that’s the symbolic level. Who is this rebirthed person, and what am I going to do, and how does my life have any meaning? And people don’t get it. People look at you, and you look okay, they think you’re okay. It’s not that I’m so depressed, it’s that I’m confused, I’m hurt, I’m scared, I’m angry, and I’m sad.

I’ve learned that I’m not invincible, that I’d better be prepared to die because you never know. I’ve learned how scary it can be, and I’ve learned how scary it can be and you still get out the other side of the fear… Well, I haven’t faced death completely head-on, but I guess my best advice about facing death is to face it, in other words not to deny that you’re going to die sometime. And to learn about death, to read about it, to talk to people, to come out of the closet and be willing to talk openly about it and talk about your fears. Find someone you can talk to. 

Trying to support someone who has cancer, it’s very important… to go with them to medical appointments and keep track of all the information that doctors or nurses give. And to go, even if the person says, “I don’t need you.” Go anyway… if it’s any kind of information at all. And that’s one thing, but the other thing is to be very, very patient, because I think mood swings come with this, depression comes with it. And try to understand that the person is very scared most likely, but they’re still a whole person. And don’t just treat them as a disease.

One of the worst things about this is I can’t do anything right now. Everybody keeps saying my job is to heal, and I keep saying, “It’s a boring job!”

All I can say is having cancer is like getting on a bus and you don’t know where you’re going to get off or if you’re going to get off or where it’s going to stop, so you have to hold on and keep riding. See what you get out of it. 

Virginia

It’s kind of an oxymoron for me, this whole life and death thing. When I was 8 years old I tried to commit suicide. I drank disinfectant when I was in an orphanage… So I’m lucky to be alive today. But unfortunately that wasn’t the only time, because I’ve suffered with chronic depression all my life, so that’s been a constant struggle with me. A lot of that is putting the good face forward, but underneath you’re dying. And literally now I’m dying from putting the good face forward all those years. It’s really ironic that I wanted to end my life, but now I’m struggling to have my life go on. 

And so I think in a lot of ways it has made me really, really, really, really appreciate life. And I think my goal for the future would be to stop controlling, to listen to people’s stories, and give them my attention, and be part of life… Live in the moment. Not tomorrow, not yesterday. Boy, that’s probably the hardest thing any of us can do, is live in the moment. 

The biggest advice I can say is, if you have a support system, ask for help. If you don’t have one, go to a group. Try to find some kind of help and support. It’s very important. And I think emotionally, mentally – you have to talk it out, just talk it out. You just can’t go through this, because you end up internalizing it, and I think that really could block your recovery. 

The fact is you need to deal with the reality. And then once you’ve done that, you can set all that stuff aside and enjoy the time you have left and not dwell on the cancer… Go on and enjoy the Farmer’s Market, or a walk in the woods or sitting on the beach, or whatever you want to do, your friends. 

I heard someone say cancer was a gift… and I thought, well, these people are nuts! I mean, how could this be a gift? But in some ways it’s a gift of time… Take charge of your life. We’re given this gift of time that we can decide what we want done. I mean, I’m going to plan one hell of a party for my funeral!