Rose doesn't look like she has cancer. She is trim, healthy, active and cheerful. She lives in Massachusetts with her "significant other" Scott. She maintains a home, a job, and a wonderful garden full of bird baths and feeders. We are sitting out on her backyard patio, watching jays, finches and squirrels evade her three cats expertly, sipping soda companionably, and I am wondering how to start the interview. I realize I am more uncomfortable with the subject of cancer than she is, a personal revelation that disturbs me a bit.
DC: What type of cancer do you have?
Rose: I have what is known as "type two" cancer. It isn't the worst, or the best. "Type one" is when the cancer is located only in the actual tumour, and hasn't spread anywhere. "Type two" is when the cancer has spread to the lymph nodes, which send cells to all parts of your body. The possiblity exists that your cancer will spread uncontrollably, leading to "type three", which is the worst. Right now, when I say I have cancer, it means that I am prone to cancer. I have had surgery for cancer, and two recurrances. My body is prone to cancer, and it can recur at any time. I have not reached a state of remission yet.
DC: What is remission? What does it mean? Do you have active cancer now?
Rose: You are not considered in remission until you have gone five years without a recurrance of cancer. It's been two years since my last episode.
DC: How did you find out that you had cancer?
Rose: A lump was discovered in my breast, and I had to decide whether or not to have a masectomy, or just go with a lumpectomy. My philosphy is "if it's no good, get rid of it," so I opted for the masectomy. A sample of lymph node tissue was taken during the masectomy, and it was discovered that yes, it had spread to my lymph nodes. My doctor, who is wonderful...I love her, even though she calls me an old broad, hadn't told me that it would be wiser to have a strong dose of chemotherapy after the operation, so I only had a mild chemical dose, for about three months. It was relatively painless..hardly any nausea..I wasn't sick..lost my hair, (she grins) a whole story in it's own, but I was able to function normally. After all the horror stories I had heard about chemotherapy, I was quite relieved. When it came back nine months later, I wished that my doctor had told me that the initial chemo should have been stronger. I don't fault her for it, she was trying to be hopeful. I think she was responding to my own hopefulness. She didn't want to imagine the worst, or to scare me. She admitted later that she thought I was going to die when the cancer returned. Usually, if it returns within the first year after your first treatment, your chances of living are slim. The second round of chemotherapy was much tougher. It meant going to the hospital every three weeks for 24 hours while they inject you with all this chemical crap. The worst part was it made me feel filthy..you feel filthy..I could smell the chemicals coming out of my skin. The third time it was easier. I had radiation therapy. Even though I had to go to the hospital every single day for four months, it was easier than the chemotherapy. Of course, now I have a shoulder that doesn't work very well, and I can't move my neck properly. The radiation dries out the natural lubrication, called facia, that layers your muscles, allowing them to move smoothly.
DC: How did you deal with all this?
Rose: I fought constantly to maintain normalcy. I continued to work, and insisted on doing most things the way I had always done them. My docter thought I was nuts, she told me I should be taking better care of myself, but I told her I was taking the best care of myself that I could. I used to think that if I were told that I had six months to live, that I would run out and splurge and do all the things I always wanted to do. (grins) But I'm a pessimistic optimist, and I figured if I did all that stuff, I would probably live to be 80 and be stuck with all the bills.
DC: You didn't get depressed?
Rose: If I had sat down in a chair, and moaned and cried, "Oh I have cancer," I would have died. She (the doctor) asked if I was having bad dreams. I have never had one bad dream about cancer...I have had dreams about losing my hair..(laughs) but not cancer. People are always saying "Gee, you deal with this so well." What do they want me to do? Hang on to their legs and cry.."Oh pity me, I have cancer?"
DC: Well, I think that they can't imagine themselves dealing with it as well as you do. That's probably why they say that. They can't know how you feel, they can only imagine. I personally don't know if I could be as cheerful and up as you seem to be.
Rose: Yeah, I understand that..and for some people, resting and recuperating and being a bit pampered might be the best thing for them. It just isn't for me.
DC: Don't you ever get angry? Don't you ever rant and rave against fate? I personally can see myself getting angry over the unfairness of it.
Rose: Oh, yeah! Definitely. The best part of it for me is getting angry. If I'm angry, I'm not feeling sorry for myself. I never stay angry long, though. It's too tiring to stay angry long. I am extremely lazy..(laughs) and getting lazier by the year. It's exhausting to be angry. It takes up a lot of energy, and a lot of time. I'd much rather read a book, than sit and be pissed off. It's totally unproductive.
DC: What about your priorities? How have they changed in relation to having cancer? What is important now that wasn't important before?
Rose: Health insurance. (emphatically) I live in terror of losing my job. I know I could get another job, but with the pre- existing clause written into health insurance policies, I would never be able to get health insurance again.
DC: Did your long term goals change?
Rose: That was the hardest part. (pauses thoughtfully) For two years, I didn't plant bulbs in my garden, because I was afraid that I wouldn't live to see them bloom. Once I got over that fear and started planting again, and planning my garden again, it made a real difference in my whole outlook. I stopped thinking that I was going to die next month, or next year..that I was not going to see the fruits of my labor. (takes out a cross stich sampler) I made this..it was a milestone. (The sampler reads "To plant a garden is to believe in tomorrow.") And dogs...I always have had a dog, but I still won't get another one. I'm still afraid I may not outlive the dog, and I wouldn't want to burden Scott with taking care of a dog if that happens. (brightens) One good thing..I have a 401K plan at work, and I'm not worried about how big it gets..(laughs)..and I don't really don't care if social security runs out before I'm 65..So some of the things that people spend a great deal of time worrying about, I no longer spend a lot of time and energy thinking about. I worry about whether or not I'm going to be around when a movie I would like to see comes out..that's the kind of thing I worry about now..And I no longer get offended when people tell me I'm old. The most wonderful thing I can think of is to become a 90 year old grump, giving everyone a hard time. (breaks up at the thought) I'd whack everybody with my walker.
DC: What was your lowest moment?
Rose: The third recurrence of cancer coincided with the restructuring of the company I work for. I was told I would have to move to CT, or possibly be unemployed. That was definitely the worst. I thought, not only am I going to die, but I am going to either die unemployed, or if I am employed, I'm going to have to give up my house, and make Scott move. Within four days I was facing the prospect of losing my job, my house, and possibly my life. It was the first time I considered things like going to stand out in front of a truck. (laughs) But I'm a fighter...not a rah, rah, placard carrying sort of fighter..but a fighter anyway. Scott says it's because I'm polish, and we're silently stubborn. Fortunately, the company rallied for me, and I am now working out of my house..which I don't have to move from now. (relieved sigh)
And then there was Space Mountain..you know, at DisneyWorld? I got on the ride and was ripping down through the dark, and all of a sudden I realized that I was in danger of losing my wig. All I could think of was "my hair is going to fall off.." (laughs again) We finished the ride with me holding my wig onto my head, and Scott holding on to me, so I wouldn't fall out. It's astounding the kind of things you aren't used to thinking about day to day, that you have to worry about now.
DC: What about Scott? This whole thing has to scare him. How does he deal with it?
Rose: He's frustrated, because he wishes he could fix it. He wants to make it better for me, and he can't. He tells me he thinks about it a great deal, which is only natural, but he does the same thing I do. He minimizes it. He picks up his cues from me. If I don't want to talk about it, he never brings it up. If I feel a need to talk, he talks with me. But he has always been supportive...through all of this, he has been so wonderful. I sit in doctor's offices and hear horror tales about husbands and boyfriends leaving after masectomys. Scott never left me. As far as I can tell, it makes no difference to him. I didn't find this out until recently, but Scott actually went to a classes at the hospital relating to dealing with people with cancer. He wants to help, to understand, and I can't tell you how important that is to me.
DC: What would you say to someone who was going to get a masectomy? And what advice would you give to someone who had cancer?
Rose: First, in relation to the masectomy, I think the most important thing that you can remember is that you are more than just a breast. You are made up of a mind, a personality, a soul, a spirit...you have so much more to offer than just a part of your body.
(pauses a moment) And as for the cancer...minimize it. Do not allow it to run your life. Cancer makes you a victim..there is nothing you can do about that..but you can decide how much of a victim you're going to be. Your mental health has the most impact on you. I you think it's the end of the world, then it probably will be. I refuse to give cancer too much importance in my day to day life...it's already taken enough, thank you..I'm not letting it take any more. Do what you do every day. Listen to your doctor, do what your heart tells you to do. Get up in the morning, have your tea, admire the beautiful mornings..maintain all the little things. I've always hated the way people don't even use the word "cancer" anymore. They are so afraid of saying it, that they call it The Big C...mine's not a big C...it's a very little c..and I think about it every day like everybody who has it..but I don't spend too much time dwelling on it. Whenever it starts looming up, find something to make it small..go shopping, watch a movie, make dinner..don't let it ruin your life, because if you're still living, your life should be your own.