Elizabeth, Ohio
ANDREW: Joining us now is Elizabeth in Ohio. Was there anything that your doctor didn't share with you? Anything that you were surprised by? ELIZABETH: The only thing that I found that no one tells... not any of the doctors that the women have come into the support group have been told... you know, when you are on chemo, your immune system is gone. So, when I went in to take my treatment, the nurse told me, don't do buffets, don't do this. So gradually, I started asking questions and reading and found out that even at home, a piece of fruit should be washed, even after someone gives it to you or you get the first slice of melon. Those are the kinds of things that I think we're not told. At least, I wasn't told. Sleep disturbancesWendy, Texas
ANDREW: Let's go to Wendy in Texas. So, Wendy, you're a doctor and then you find out you're a patient. WENDY: Right. And you asked, how did the medical team prepare me? Interestingly, the team gave me the information sheets that they give all patients having to do with the drugs. And as a patient, I remember finding it very difficult to concentrate or process written information, like lists of side effects and things, when I was going through the trauma of adjusting to my diagnosis and dealing with my children at home. I think those sheets were more helpful for my husband, but the backup was that when I had a question or a problem, I could just call. Even coming to the cancer experience with my background knowledge, there are a number of things that in retrospect really took me by surprise and would be very helpful to know ahead of time. For example, from the time of my diagnosis to the subsequent weeks and months of my intensive chemotherapy, I had a sleep disturbance. I had trouble sleeping through the night. There were times I had nightmares. Some of it was related to the stress of the new diagnosis, but as we all adjusted to the diagnosis and the routine of treatment, I continued to have sleep disturbance that clearly was related to some of my medications. And it took awhile for us to recognize that I had a sleep disturbance or to connect it with some of the medications, let alone to begin to do something about it. And the reason I bring it up is, sleep is such an important function. And I think that either inadequate sleep or poor quality sleep can make the whole cancer experience that much worse. But my point is that I suspect that a lot of patients have sleep disturbance and either assume it's just part and parcel of being a cancer patient, or they think that nothing can be done about it, so it's not addressed. It's not brought up as a problem. DICK: In your case, what was done about it? Was it other medications that helped you? WENDY: Some of my medications were adjusted. Some medications were added for certain periods of time to help the sleep. I ended up getting some counseling from an oncology social worker just to make sure that some of the emotional issues were not exacerbating, contributing to the sleep disturbance. DICK: I'm glad you raise that point too, because probably in diagnosis, early on especially, we don't think about what the potential emotional impact is going to be. WENDY: During my initial chemotherapy, there was intellectual dysfunction. My short-term and long-term memory were significantly impaired. I had word block. I would lose my train of thought, similar sorts of intellectual dysfunction. DICK: Was that frightening? WENDY: It was emotionally very difficult because I valued my intellect. I was a physician who was used to remembering things and being in control, and cancer represented such a tremendous loss of control that here I'm an adult and I can't remember the shopping list! I can't remember to relay a telephone message! And so, it was one more very significant assault on my sense of self. Memory lossWendy, Texas
ANDREW: Wendy, this is Andrew Schorr. I want to draw on your medical knowledge for a second. Is that kind of effect of memory loss, etc., a documented effect of chemo?
WENDY: Yes, it is. It's very common, especially with the intensity of the medication and the combination of medications that I received. We are now starting to see studies that document similar changes in cancer patients and thankfully, it is usually reversible.
ANDREW: Wendy, you've been on both sides of the desk, if you will, so with that experience, what would you say to a newly diagnosed patient to ask questions, or what would be sort of the tool kit you would give them so that they might not be blindsided by some of the things that could come up with their treatment?
WENDY: I think the key is being prepared for the possibility of some of these side effects. And I emphasize "possibility" because not all patients, even receiving the exact same chemotherapy regimens, experience it or experience it to the same degree. But if they're prepared for the possibility, one, they won't be shocked or surprised or try to deny to themselves that its happening. The second part of it beyond preparation is encouraging a willingness to communicate with the healthcare team. Because even if something can't be done about it, having the symptom validated, knowing that if you're the patient the symptom is being watched, that anything fixable is being addressed, that any potential problems that might be related to the symptom or might be due to the symptom are being looked for, is tremendously comforting.
ANDREW: Wendy, what are specific questions that you would say someone could ask, newly diagnosed, to draw out the kind of information they need to understand what lies ahead?
WENDY: Actually, my first book, "Diagnosis Cancer: Your Guide to the First Few Months", is a primer for newly diagnosed patients who know nothing about cancer to teach them in an easy, simple, comforting way, what is going on and how they can communicate with their doctors and nurses so they get the care they need. I think the most important questions when you're undergoing treatment are... let's say the treatment is already decided on and you're going to start your treatment Monday: What can I expect from my treatment? What signs or symptoms do I need to call you about emergently. What thing that happens or what thing that I see? Should I pick up the phone and call you, even if it's three in the morning? What sorts of things should I call you about, maybe not emergently, but within a day or so? Do I have any limitations or are there any things I shouldn't eat or shouldn't do? What are some things I can do to help me through this physical challenge of my treatment? Those are, to me, the key questions to ask right up front.
DICK: Your point is so well taken too, about the patient needing to take responsibility for getting the information that he or she needs.
WENDY: The other personal note I'll share with you is that, as a patient, no matter what I feel emotionally, if I see or feel something that isn't right, even if I'm embarrassed or reluctant to call, I need to call. Making decisions about treatment
Nancy, Florida
ANDREW: Joining us from Florida is Nancy. I understand that you were treated for breast cancer in June, but you've been active in the healthcare field for some time. So, since you're an experienced patient or caregiver, you know a lot. Would you list some things that you would urge other people who are newly diagnosed to be sure and do so they can get at information they really need related to their treatment or how to get the best treatment? NANCY: I think that, you know, I trust my gut reaction. It has served me well in life. And if I feel puzzled or confused, for example, if a doctor doesn't treat me either well as a person or doesn't give me clear information, I am either going to go back and get it clarified or I'm going to find another doctor that speaks more clearly. DICK: You set a wonderful example in that regard, I would have to say, Nancy, because that should be a patient's right, to be able to have access to the kind of information they need. And if you're not getting it from a physician, you certainly have the right to either make a change or demand or ask more forcefully for that information to really support what you need to know to deal with your illness. NANCY: I think that's important, if you're going to be an assertive patient, because more and more doctors are getting used to assertive patients, but it wasn't the norm. I think it's becoming more so, and I think things like the Internet really help patients to feel as much as doctors may not like when patients come in with a sheet of things they've printed off the Internet, it makes patients feel a little bit more in control. And they may have some accurate and some not so accurate information in there. But at least there's room for discussion. DICK: What has been the course of your treatment since June and have there been any major surprises in it? NANCY: There was real pressure for me to take radiation. And initially, I intended to do that. But, I've kind of bucked the system. DICK: Tell us about your decision to decline that part of the treatment. NANCY: Well, I did a lot of research on the Internet. I liked my surgeon very much, and we could discuss... infact we e-mailed each other things. We could discuss the whole issue of how the research is being done and I have some real questions in my mind about radiation. So when I met with the oncologist, he was very troubled that I did not want radiation. He tried to talk me into it, and I had already made the decision not to do it. And yet, he didn't give me enough justification when I laid out all the research that I pointed to that was going on, he didn't give me enough of a justification. And I may pay a price, but it's my body and my life, and my life has gone on very well since my surgery. The surgery is really quite easy, a lumpectomy is not hard. At least none of mine have been hard to come back from. ANDREW: We wish you well, Nancy. We're going to move on but we may come back to you if you can stay with us, but we want to hear from Michelle. A good relationship with a physician helps to copeMichelle, New Jersey
ANDREW: Michelle in New Jersey, you were only 28 when you were diagnosed with acute promyelocytic leukemia. Your diagnosis was very sudden, can you tell us about that?
MICHELLE: I was feeling run-down and just had some routine blood work done, just to confirm what I though was my anemia that I had all through college and pretty much all the time as a teenager. And I received a phone call, kind of a panicked phone call from my primary care physician on a Saturday morning and he said, "Michelle, where are you?" And I said, "Well I'm at home, on Saturday. I have big plans, I'm going to try and enjoy the weekend a little bit." And he said, "I need you to get to the hospital right away." I said, "Why, what's going on?" He said, "Well your blood results came back and your levels are very serious." And I said, "Jeez, this is kind of crazy!" I got off the phone and I thought, jeez, they're really kind of over-reacting here. I'm sure it's nothing more than anemia. I mean, I feel great, I'm in great shape, I run five, six miles a day, I don't drink, I don't smoke, I eat really well. What are you so worried about? I went into the hospital and within about two hours I was told that I had leukemia.
DICK: And then, what was your emotional response?
MICHELLE: I guess I was absolutely shocked. And I was like, okay, I have leukemia, what do we need to do? But it still never sunk in that it was cancer, and how serious it was going to be. And luckily, the oncologist that my doctor referred to me, who I just met over the phone and he greeted me at the hospital, was and is an unbelievable man. I really, really lucked out. And he sat down with me and said, "Look, we're going to really have to get to work here. Things are really critical and we don't have time to fool around." But luckily, I had this wonderful doctor who would sit with me, and I could ask him the same question that maybe to me was even foolish. I could ask it to him five, six times. And I just think of how lucky I was to stumble upon this man and be treated by him. I guess I put all my faith in him because I didn't know if I had any other choice. I didn't know what else to do. I couldn't say, "Well, I'll come back in a week. Let me think about it." Because if I had done that I wouldn't have made it, because I started hemorrhaging immediately once I was in the hospital. And my only remaining hope for a cure and to survive was a bone marrow transplant. And that was done in December of 1994. And I've had clean bone marrow tests and blood tests since then.
ANDREW: So, in your case, it seemed like you didn't need to look for other sources of information, you had a great medical team. Looking back on this now, if another 28 year old, suddenly found that their life was turned upside down like this, any advice for them?
MICHELLE: Wow! I guess the main thing is, like Nancy said, if you have a doctor that isn't giving you the information that you need. And in my position, it was the comfort that I needed, knowing that he would always talk to me, and at least calm me somewhat. If you're not getting that from your doctor, find another one, and find someone who will give you the care and treatment that makes you feel like you can get through this. I think that's really important. Family; without my family, I don't know what I would have done. I had tremendous, tremendous support from my family, from my friends, from my co-workers. I was really lucky on my work end that I had this great group of people who, for the year and a half that I was out of work, donated to me their own vacation time, and I never lost a paycheck for the whole time that I was out of work. So, a lot of times when I... when I talk about my illness, I always feel like... I mean I know how unbelievably lucky I was. And I feel bad sometimes talking to people because, I think, wow, I didn't really have it that bad! And I look at it like that and my family says, "You're crazy, because it was awful!"
DICK: Now, after a bone marrow transplant especially, sometimes there is the need for long-term follow-up care. Are you still in treatment?
MICHELLE: No, I'm not. I do have one long-term effect that I'll have for the rest of my life. They informed me that I really had the high possibility that I wouldn't be able to have children from the intensive chemo that I went through. So they were accurate there, that did indeed happen, but I was prepared for that. And it's kind of a scary thing to think about when you're 28, thinking, wow, I may never have the opportunity to have children. But when you're thinking about your life and... it just... it was something that I couldn't dwell on. I needed to say, I have to put this aside and fight and be strong and whatever...
DICK: And survive...
MICHELLE: Mm-hmm. Yeah.
ANDREW: Someone will hear us who is also in their twenties and has had great health, and then suddenly finds they don't. Newly-diagnosed. What would you say to them to give them some hope?
MICHELLE: I would say, "Look, it's going to be really hard, it's going to be hell. There's going to be times that it just gets really, really crazy. But it's all about how strong you are and how much you can beat this, because you really, really can." And I am so convinced. I mean, I did have wonderful, wonderful medical treatment, but I never gave up. There were times that I got really down and thought, God, this is so unfair, you know? Typical, "Why me? Why me?" But just to be strong, keep your family and friends close to you, they're there for you.
Ideas about accepting help
Elizabeth, Ohio
Nancy, Florida
ANDREW: Elizabeth, how do you let people help you and do you have any advice for remaining calm? ELIZABETH: My family was very supportive. At the time I was raising my grandson and he gave me the initiative to get up every morning to make sure he got to school, or to make sure he got to camp, or to catch his bus for camp. DICK: I was curious to ask you Liz. You talked about sometimes family members having a reluctance to talk about cancer, probably because they themselves are scared by it. I understand you found a way to help members of your support group communicate with their families. ELIZABETH: I bought a bunch of diary books, about a hundred of them, and passed them out amongst all the women and men. What it is, they write down all those things that were going through their minds at that time that they were going through cancer. The things that they were not able to talk to their families about or friends about. And it's in a book now. They can talk... they can read it. It can be shared. They talk about their symptoms, they talk about their treatment, they talk about their whole total experience with cancer. And so what this did was, it gave the family members a way of treasure, to look at what this person went through whether another family member experienced it or not. ANDREW: Nancy or Michelle, comments from you about how you let people help or how to remain calm? NANCY: Well, on letting people help, I'm a social worker, so that's not my strong point. I'm usually helping others. I think most people find that the vast majority of the people in their life do really try to help them and be there for them. And then you have to figure out, I don't usually ask people to help me. I kind of do things for myself, and I learned how to ask people to help me. Small things, you know, but... DICK: But still, for a social worker that's good. That's a break-through for you.[Laughter] ANDREW: How did you open up the discussion with people who didn't want to back away but didn't know what to say? How did you bring them close? ELIZABETH: What I did when my girlfriends came over to visit, I showed them my breast. I wanted them to know exactly what it was and what it looked like. We had a luncheon for all the females in the office, and I shared with them everything that I went through. What it felt like, what it was, how I felt, you know, was I fearful? And most of them were very fearful of it. And I said I was just blessed because I truly asked God to take this. But I think with anything that we do in life, that we have to have a real belief that this is what it is. Because what is, is. You can't change it. Some people don't know what to sayMichelle, New Jersey
ANDREW: Michelle, any comments from you on how to allow people to help? MICHELLE: I guess I saw that people were reluctant to come to me because they didn't know the right thing to say. And I think just letting people know that they don't have to say anything. I know there were days that, when I was in the hospital, just having a friend sit there and watch TV with me or just being in that room while I slept, made such a difference. And it doesn't have to be someone who is an expert on cancer and knows the perfect thing to say, it's just having people near you and letting people know that you need them near you and you need just their comfort and their support. But I think you also have to be able to tell people sometimes that, you know, I'm really uncomfortable, I feel horrible. You have to let people know that you're not there sometimes to entertain or be social. You're just struggling and you just have to tell people what really is going on in your mind and physically how you feel and just be honest with people and let them know what you need. I think that's really the most important thing. DICK: The thing that you did, Michelle, at least the way you describe it to us today, and I want to know how you did it, and that is, in the face of your diagnosis, you say you remained pretty calm. How do you do that? How do you retain that composure? MICHELLE: Well, I guess I felt like my world was falling apart when they told me that I did have cancer. And I knew, if I just lost control and thought, I'm going to die, or whatever, I knew that that would make things worse. So there were the bad days when I got down and I really was afraid, but most of the time, I just... you just have to keep telling yourself, you know, whatever it is that it... if it's prayer, if it's music, if it's quiet time, whatever it is, whatever thing keeps your mind clear and focused and helps you to stay strong and able to beat the disease... I guess it's so different for so many people. You just have to stay focused with it. ANDREW: Okay. Thanks very much, ladies. And Dick, my co-host. ALL: Thank you. Note: All the content of this interviews has collected from American Cancer Society's Cancer Survivors Network.
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