Contents

1

Welcome and Participant Introductions

2

Cancer treatment and pregnancy issues

3

Miracle babies

4

Questions about fertility and cancer treatments

5

What helped you deal with the possible loss of fertility in the future?

6

Fear of recurrence

7

Fear of recurrence: a different perspective

8

Mind over body

9

Support Systems

10

Making Treatment Decisions with Your Doctors

11

Building Strength During and After Treatment

Welcome and Participant Introductions:
Dr. Harpham, Melanie, Lisa, Jennifer

Listen With
(3 minutes 19 seconds)

Dr. Harpham:

Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today we will be talking with three women from across the country, all under the age of 35, who have completed their treatments for lymphoma or leukemia. As a doctor of internal medicine, and also a ten-year lymphoma survivor myself, I'm ready to have a great conversation with these women. First, let me introduce briefly our three guests, and then I'll open up the discussion as we talk about issues, such as family planning after cancer, dealing with the fear of recurrence and with checkup anxiety. Creating and maintaining a supportive environment during and after treatment. Making treatment decisions with your doctors and nurses. Improving your physical well being during and after treatment.

Right now, I want to say hello to our first guest, Melanie, from South Carolina. Melanie was sixteen years old when she was diagnosed in 1992, with Hodgkin's lymphoma. She'd gone to her doctor because she'd noticed a swollen lymph node. Her doctor advised her to watch it, suggesting it might be cat scratch fever. Three months later, the lymph node was unchanged so her doctor removed it. Examination under a microscope and special tests of the tissue showed that it was Hodgkin's lymphoma. Four months of chemotherapy and six weeks of radiation therapy put Melanie's lymphoma into remission, and she has been free of cancer ever since. Hi, Melanie, so glad to have you on the show.

Melanie:

Hi, it's nice to be with you tonight.

Dr. Harpham:

Lisa:

Hi. Thank you for having me.

Dr. Harpham:

Our third guest is Jennifer, from Connecticut. In 1991, Jennifer was diagnosed with immunoblastic non-Hodgkin's lymphoma. For two months her doctors tried to figure out why she was feeling run down. They tested for mono and many other things, but they didn't do a chest x-ray. She awoke one morning with severe difficulty breathing, and checked into a hospital. A chest x-ray and other tests were then done, which led to her diagnosis of lymphoma. Jennifer was treated with nine months of chemotherapy, followed by a bone marrow transplant. After that, she moved back home to live with her mother, isolated from most people until her immune system was built back up. That lasted about six months. Jennifer has since married and had a little boy. She's doing well and we're glad to have her on our show today. Welcome, Jennifer, to Cancer Survivors Network.

Jennifer:

Thank you, it's great to be here.

Dr. Harpham:

All right. I'll open our discussion by talking about issues of family planning. Some cancer treatments, especially radiation to the reproductive organs, or intensive chemotherapy, can cause permanent subfertility, or infertility in cancer survivors. For young patients, this side effect of lifesaving treatment can be a major issue during or after completion of treatment. Let's go to Melanie, who is now 24 years old, but was only sixteen when she received her lifesaving treatment. Melanie, how did you first learn that your cancer treatment might have affected your ability to have children?

Mel:

I believe it was right when I was diagnosed and my physician was talking to me about the treatment options, and he said that the chemotherapy, the strong chemicals that were going to be used, could have an effect on my reproduction. And he never actually went into the big details because I was only 16 at the time. And I believe at the time I was not in the frame of mind to ask further questions regarding reproduction, but now, at 24 years old, and thinking about marriage, it's a big issue now.

Dr. Harpham:

Right. So when did it first become an issue for you? Just very recently or has it been on the radar screen before now?

Mel:

It's been on the radar screen before now, probably after, of course after finishing my treatment and I started thinking about it whenever I was seriously dating someone, and thinking about marriage and about what am I gonna do if by chance I cannot have children? What's next in line for me? And this may be because of my treatment that I had.

Dr. Harpham:

How did that affect you, knowing that you might have difficulty conceiving or carrying a pregnancy?

Mel:

Big effect. I think most women, they look forward to having children or raising children of their own and having a biological child, and that's what I've always wanted myself. And it's kind of becoming, not necessarily a reality right now, because I haven't tried, but definitely a thought in the back of my mind that that could happen to me, and what do I do next, if that is the case? If that has affected my reproduction.

Dr. Harpham:

Have you done anything special at this point in terms of talking with obstetricians or doing anything different?

Mel:

I haven't really talked to obstetricians, however, I talked with my oncologist the last time I saw him and he said that as far as he knows, everything should be okay. So we'll just have to wait and see.

Dr. Harpham:

So it sounds like you have a lot of hope that you are fertile.

Mel:

Right. A lot of hope that I am fertile. But then again there's always the thought in the back of my mind that I could be infertile and may not be able to have children of my own. There is still that thought and I try to keep hope, but I'll have to think about that, too, about what I would do if I couldn't have children.

Dr. Harpham:

Let's talk to Lisa, because she's been in that situation also. Lisa was as I said, married for two years. She was a young woman with no children when she was diagnosed with cancer and received treatment that is known to cause subfertility or infertility. Lisa, when and how did you first learn of the effect of your treatment on your fertility?

Lisa:

During my very first visit with the oncologist that we had after the biopsy was done on the lymph node, he warned us that there was a risk of infertility and possibly we should consider saving eggs for later fertilization. It seemed like a natural thing to do that we would go forward and do this but it was after I had the bone marrow biopsy, which was quite painful. And we decided we would take a leap of faith and just hope, we decided not to freeze eggs at that time because we'd heard that the procedure to retrieve eggs was painful and we just decided we would try and save my life for now and worry about the rest later. But that was one of the most difficult parts of dealing with my diagnosis because just like Melanie, I wanted to have a child of my own. My husband and I had known each other since we were young children and we'd always wanted to have a child together.

Dr. Harpham:

But how did you feel emotionally when you absorbed the possibility of not being able to have children in the future?

Lisa:

I think it just really made me feel like I'd gone from one end of my life to another in a single moment of time in being told. Because every dream I'd ever had for myself, I saw having a family, too, and the possibility of not having a family was pretty excruciating, along with getting told about the cancer, but we just, it was hard to make any projections for the future without believing that we could have a family, too.

Dr. Harpham:

Well, what's happened since then?

Lisa:

Well, since then, I went through treatment, as you said, with chemotherapy and radiation. Early detection was very key in my case as with everyone else, I'm sure, because I didn't have to have any lower body radiation so I was just dealing with the risk of infertility from chemotherapy. And after finishing treatment, my oncologist suggested we wait at least a year before trying to have a child, at least two years would be better. And the night I was diagnosed with cancer, we threw out any kind of chemical birth control, so we were just trying to use the calendar and other methods to prevent pregnancy. And so we waited two years to the month to try to have a child and were very happy to find out, three weeks after beginning to try, that I was pregnant. We were very lucky, because I know people who didn't go through all of that and still had more difficulty than that getting pregnant. So we thought surely in the last few years we'd mess up somewhere along the line, and that it would in fact be difficult to get pregnant, and it just wasn't. We were very lucky and had a healthy baby and he's twenty months old now, named Hunter, and just really the gift that keeps giving after all of that.

Dr. Harpham:

Lisa, that's so great. I'm sure that Jennifer would like to join our discussion, because family planning has been an important part of her survivorship, too. Jennifer, you were dating a young man when you were first sick, and I understand that he asked you to marry him when you were recovering from your transplant.

Jen:

Yes, he did. We got engaged while I was actually living at home with my mother, after being on my own for many years, had to move back in after the transplant. I was immunosuppressed and wasn't allowed to see many people. But, yes, we got engaged during that time. We'd been dating...

Dr. Harpham:

And at that time, when he asked you to marry him, you both knew that you might never be able to have children.

Jen:

Yes.

Dr. Harpham:

And happily those predictions were wrong, and you're now the mother of a five-year-old boy.

Jen:

Yes I am.

Dr. Harpham:

Can you share with us, when you first learned that you might be infertile and how that affected you? How you dealt with that?

Jen:

Actually, I found out, we, John and I had been engaged at the time. And I remember getting a call from, you know, we had talked about having children and when we got married and so on and so forth and I had gotten, actually the doctor had called me on the telephone. And I remember I was at work and I'd been asking questions and they did a level you know they tested estrogen levels and so on and so forth and had a doctor's appointment. And I called for the results and they said, Well, your range, you're in the menopausal range of your levels, which means there's a very good chance that you're not gonna be able to have children. And I just remember having this little mental breakdown at work, and calling John and saying "Forget it, maybe we shouldn't get married, maybe you should find someone". And I mean it was just a horrible thing I heard and probably since my diagnosis, was that it was just something that I never even thought about and when was diagnosed...

Dr. Harpham:

So it was after your treatment that this first became an issue. So it was not discussed before you started treatment?

Jen:

It wasn't. The first two things they told me was you're gonna be on steroids, you're gonna lose your hair. So my first two concerns were gonna be fat and bald! And I mean you know we didn't think that far down the line. I just assumed it was gonna be fine.

Dr. Harpham:

Well, how did you feel finding it out at that point?

Jen:

Oh, it was horrible! And it's just a horrible feeling, just a pit in my stomach and I just, I just didn't know what to do.

Dr. Harpham:

Well, what did you do? Did you see any doctors, did you do any research? What did you do to deal with the news.?

Jen:

I spoke to the oncologist who said that, well, all is not lost. There is always that possibility but you now chances are you may not be able to get pregnant. And we went and saw an endocrinologist who told us that our chances were not all that great, but there's always a chance, I mean, nobody ever gave us any kind of hope or definite answers, saying, yes you can do this you can do that. They talked about going in and getting eggs and going through this whole fertility process, and I don't know what happened or how it happened, I mean, at that time I hadn't gotten my period in YEARS, and all of a sudden I just started getting my period. And I called the oncologist and they said well, if you're getting your period, then there's probably a good chance you can get pregnant. So lets, come in and talk about it and I had absolutely no idea how it happened. I mean, my son was written up in the papers as a Miracle baby, because they still don't know how or why or what occurred to make this happen, but we they told us to wait for awhile. Obviously we weren't married at the time, so we decided to wait and use birth control. And after we were married for about a year or a year and a half we decided well I think it's pretty safe now. We met with the oncologist, who said, if you're ready, go for it. (laughs)

Dr. Harpham:

And that's one thing about survivorship, in many cases there is some uncertainty and that uncertainty gives survivors reasons to have hope, to have real hope. Well, I have a question for all of you: What advice to you have for young patients who might need treatments that affect their fertility? So, it's a newly diagnosed patient, who's looking at treatment options, realizing that they might need treatment that could affect their fertility.

Mel:

This is Melanie. I think my biggest advice is to ask. For young people well of course whenever you're given the news that you do have cancer, that's a big shock within itself. And the young people, it's hard for them but they need to think about fertility and reproduction because that's gonna come down the road for them and that will be an issue for them. So my biggest advice is to ask, ask your physician, ask your oncologist.

Dr. Harpham:

If the treatment might affect fertility.

Mel:

If the treatment might affect fertility. What does that hold for you down the road.

Dr. Harpham:

And then what do you advise patients when they're trying to choose between treatments, each of which might have a different chance of affecting fertility:

Mel:

Choose your priorities. Of course you want to cure yourself and you want to get better for yourself but you also need to think about the options of fertility and if this treatment has any benefits or disadvantages toward the fertility. If you're gonna get this certain type of treatment, you need to know does this have anything to do with my fertility, am I gonna be infertile after this treatment. And if fertility is a big issue for someone, if they're really wanting a family down the road, then they need to look at that.

Dr. Harpham:

Lisa, do you have any advice for young patients who might need treatment that could affect their fertility?

Lisa:

I do. And I think that it's a very individual choice, and I think that maybe my husband and I acted hastily. Because we were so concerned with saving my life that we just couldn't really comprehend what could be ahead in two years in dealing with infertility, when it came down to time to try to have a child. But I think that because it's such an individual thing, I don't think I would have done it any differently, and I can easily say that because I was able to get pregnant and have a child. But the priority for us was to save my life.

Dr. Harpham:

Lisa, you bring up an important point because you say, well we were young and we wanted to make sure I survived, I think that's the case for many young patients facing a new cancer diagnosis.

Lisa:

Right. And I think that there's always the possibility that, there are a lot of options now in terms of treatment and maybe there were other treatments available that would have decreased the chances of fertility for me. But I think it was very important for me to go with what I knew was the best possible outcome for survival, because I couldn't even consider having children if I wasn't here. And so for us that was the decision we made and I stuck by it. Now I say that again because I was very lucky and was able to have a child. I might have felt differently or regretted my decision later had it not been so easy for me to get pregnant.

Dr. Harpham:

Well, do you have any advice for young patients who have chosen the treatment, they feel it's the best choice, but they accept that it may affect their fertility. Do you have any advice for dealing with that loss, with that possibility of loss of fertility?

Lisa:

I think it's also dealing with a loss of innocence and the loss of the old self that you were before you were diagnosed. And I think that's just one of the many things that as a cancer survivor and a woman, that we have to deal with because there are no guarantees. And it's the same with statistics in survival and statistics with fertility and I think it's still an individual choice as far as the outcome of possibility of infertility too. It's, very cancer is a tough thing to deal with and that's one of the many ways that made it difficult.

Dr. Harpham:

Jennifer? Any thoughts?

Jen:

Well I agree. At the time I was diagnosed, I mean, they diagnosed me and started chemotherapy within hours of diagnosing me. I was in the hospital at the time and I mean like I said, I had just been dating someone. And the thought of having children with this person much less, you know after a diagnosis of cancer is just not, it didn't pop into my head. And you know after months and months and after you know, recovering from it is when and when John and I got serious and got engaged, it was like, okay, well now I have to start thinking about this. But had they given me any indication or if I even considered that at the time of my diagnosis it may have been a whole different thing. I've always wanted to have children and I don't know if I'd consider putting my treatment on hold while they did something else and that could very well have jeopardized my life and you know, I just wasn't given the option at the time it was not a consideration.

Dr. Harpham:

Looking back and knowing what you know now, what advice would you have, let's say your next door neighbor was a young person diagnosed with a new cancer and was gonna have to start treatments that would affect fertility. What would you advise her?

Jen:

Well I'd just advise her to ask as many questions as possible. And depending on the age she was or what her feeling was, there's so many other ways and medicine has come so far now that it's very possible that you just don't know, you don't know until you're put into that situation. And like Lisa said it's easy to say now because we have these beautiful children, but to think about it at a younger age or like Melanie said at sixteen you just can't think about things like that. So it's just tough to put yourself in anybody else' shoes and even to go back and said, oh I should have done this or I should have done that, you just have to listen to your heart and just basically save yourself. I mean you can't save a child that hasn't been born yet, you need to worry about being there for yourself and your family and think about your parents. I mean, this was probably just as hard on my mother if not harder than it was on me. I mean they say having a sick child is one of the most stressful things and one of the hardest things to deal with. And you know I saw what it did to my parents, I can imagine putting them through something just for what might happen in the future, in my future.

Dr. Harpham:

Well, to put a little closure on this topic of fertility: I'd like for you all to share with us something that someone said or did that really helped you deal with the fertility issue?

Lisa:

This is Lisa. I can say that. My lifelong family physician diagnosed my cancer. He had delivered me 24 years before, he knew me, he knew my family. And I remember going to him toward the end of chemotherapy or maybe the beginning of radiation, just for a check in with him because he liked to keep an eye on what was going on. And I remember asking him, should I wait five years until they tell me I'm cured to have a child, should I wait, what should I do here? And he said he was very blunt and very direct and I could appreciate his honesty, because it helped get me through it. I always knew he was telling me the truth, and he answered me just said you know, you could leave here today and get hit by a bus or you could leave here and in two years decide you want to have a child or a year from now. But you need to try and find a way to go on with your life and still make choices that are responsible because you had this cancer. But still be who you are and find a way to live the rest of your life without this tainting the rest of your life.

And I remember thinking when I went home that the worst case scenario wasn't getting hit by a bus, it was that I wouldn't be able to have a child. And he was honest and said that you could give something back to this world and you could die in four years in another wicked scary form of cancer that is a recurrence, or you could get hit by a bus. And either way, you would have had a child to leave to your family and your husband and your parents to know that you were here. I think that was the best advice I got because I had to start figuring out a way to make decisions in my life for me that weren't always going to be about the cancer.

Dr Harpham:

Jennifer? Melanie?

Jennifer:

I think that just having my fiancé at the time. I remember getting the phone call and them saying well, your estrogen levels are off and there's a good chance you can't get pregnant, and you know calling John and saying, that's it, you know, what are we gonna do? And he said, we'll do what we have to do. I mean, I'm here for you, and to know that I had somebody with me that was gonna share the rest of my life, that it wasn't a major tragedy. And you know whether I could have his child or we had to go and adopt a child or deal with some medical issues, that wasn't it, the fact was that we were together and we were both alive and well and you know, were going to continue to be together. That was, that's what got us through it.

Dr. Harpham:

Excellent.

Melanie:

The best advice I got was from my mom. She of course stuck by me through everything and we had a couple of discussions about the fertility since then, and she just says, Keep your head up and whenever you're ready whenever you get married and you're ready to start trying, because if it happens it happens, if it doesn't, it doesn't. And you just keep saying that you're a survivor and if you can conquer cancer and if you can survive cancer and the treatment and everything that you went through, then you can survive this, and it'll happen.

Dr. Harpham:

So, keep hoping, and you can live a full life no matter what happens.

Mel:

Exactly.

Dr. Harpham:

Wonderful. Well, let's move on to dealing with the fear of recurrence. Unless the cancer was easily and assuredly cured, most cancer survivors in remission deal with fear of recurrence to one degree or another, fear that the cancer may return, it could be fleeting or infrequent; it could be consuming and near constant. I'd like our guests to share with us what it's like to have fear of recurrence and how they dealt with it. Let's start with Melanie, because I understand that this has been a significant issue for you. You were just a teenager when you went through chemo and radiation. How do you think being a teen affected your fear of recurrence, and how has your fear changed over the years, Melanie?

Mel:

Being a teenager and related to the fear of recurrence: I wasn't fully aware at the time whenever I was diagnosed, I had other priorities at the time. I wasn't thinking about cancer and whenever the cancer occurred, that definitely changed my life and my outlook. Course, you do what you have to do and I did what I had to do and went through my treatments and everything. But still, being 24 years old right now, it does come to my attention sometimes, I'm thinking subconsciously, What would I do? If I had a recurrence? It's not consuming I don't think this consumes my every thought, but it does you know, whenever I get sick sometimes of whenever I feel something abnormal, I'm always checking to see if I think it could be related to the cancer that I had or maybe a recurrence.

Dr. Harpham:

So when you get sick or you feel something different in your body, not only do you think, does the thought come to mind that it might be cancer again, but you actually go to your doctor? So you don't stay at home and wonder, you actually go to your doctor and say, I'm feeling sick, can you check me out?

Mel:

A couple of times I've actually gone to the doctor just because I've been kind of uneasy about what I've been feeling or how I've been feeling. So not of course very time I get a sneeze do I go to the doctor. I'm pretty comfortable knowing my everyday illness or just a common cold, but if something abnormal happens or if I feel something abnormal, I will go to the doctor. I don't sit around and just wait it out and see if anything happened with it, I've learned my lesson on that. I do go to the doctor.

Dr. Harpham:

It sounds like, although you may have more concerns of the possibility of something going wrong than the average teenager or young adult, it sounds like because you were a teen, you probably had less fear of recurrence than most. Because as you say, your priorities were elsewhere, you were just kind of going on your way. Do you think the problem of fear of recurrence has become more or less of a problem as you get farther from your cancer diagnosis?

Mel:

I think as I get farther from it, it's becoming less. It's becoming less because I feel like I'm leaving it behind, I'm getting farther away from it and I feel that the farther away I get the less chance of recurrence that I have.

Dr. Harpham:

Well, Lisa, I have a question for you. I've been told that you have NO fear of recurrence. Well, recurrence of Hodgkin's is a very serious disease and I'm sure that no doctor has given you a magical guarantee that you will never have Hodgkin's again. Is it accurate to say that you have absolutely NO fear of recurrence?

Lisa:

It didn't come overnight. Well, after diagnosis for the first year and a half or so, maybe two years, I was just always afraid. And my first checkup you know every three months the first year, I'd go for a checkup and start to feel strong and it was time for another checkup again and I remember compulsively checking for lumps and just really feeling afraid all the time and having such a hard time relating to my peers, because they just had no idea what I was going through. And I saw other people going on with their lives, these carefree lives that they had.

But when I got pregnant with my son, and it wasn't just when he was born, it was the moment I found out that I was pregnant with him. I was at home by myself, and my husband and I had taken pregnancy tests quite often for about two years, because of CAT scans, and you have to make sure you're not pregnant. And this one I did by myself, I just had a feeling and grabbed a test on my way home from school that night and did it here at home, and it was just the most defining moment for me and brought real clarity to my life. And what had happened to me because I figured out, I kept waiting for this epiphany of sorts to explain all this to me and what had happened and what it would mean, and I like to think that I continue to learn as I go along through these years after having cancer. But at that moment I felt like everything in my entire life, good or bad, that I'd ever gone through, had led me to this specific baby. So I could no longer question anything in my life, and I just felt like at that moment I really felt redemption and felt healed from what had happened to me. And I truly, my focus had shifted and I just became a mother in that moment and I've really had no fear. Now, to say that when I go to my cancer center and have a checkup and I'm around hundreds of cancer patients while I'm there, to say that that's not an uneasy feeling would be a lie. But as far as my everyday thoughts and purposes and habits, it's just not a part of me any more.

Dr. Harpham:

Well, what about the night before your checkups, Lisa?

Lisa:

Um. Well I don't want to sound smug about it, I don't want to sound like oh, I'm above that, because I'm human.

Dr. Harpham:

We're all different. We just want your experience.

Lisa:

Right. I think it's just really, I just hate being in that place. I hate going to the center and I hate having to be poked and I hate having the iodine put in my body and being scanned and all of the things that we go through for our checkups. I despise it. But I do it out of responsibility. But I don't feel afraid when I go any more.

Dr. Harpham:

So it sounds like, you get anxious about the mechanics of having your checkup but you really don't have fear of the cancer before your checkups any more, since you got pregnant.

Lisa:

I don't go expecting to hear cancer at all. I don't go there. The moments before my doctor walks through the door, and he comes in he's always so nice and shakes my hand and makes small talk, I always want, Get to the point, everything is fine, now we can have our small talk. But I just have found a way to release it from my everyday life and be this mom that I always wanted to be, and I just feel like anything else might be wasted energy take away from that.

Dr. Harpham:

What about Jennifer? You know, you lost a close friend to cancer . How did that affect your fear of recurrence?

Jen:

Well, I was actually home recovering from my bone marrow transplant and my very best friend, who was supposed to be a bridesmaid at my wedding, called me and said, You're never gonna believe this. And I DIDN'T believe her. I mean she was one of these people, you know, we used to call her the drama queen because everything was, you know, she had a cold it was pneumonia, you know she was such an exaggerator and she called me and I kicked myself for not believing her right away. And I'm like, Joan, please, cancer? You know? And yeah, she died actually two months before my wedding, and that was, it was horrible to actually see somebody else go through it. And at the time I was just recovering, I mean I had barely grown my hair back at the time, so I wasn't really worried about recurrence as much as I am actually, NOW. Lisa said having a child makes her fear it less, it almost makes me fear it more. If anything ever did recur I wouldn't be here to see my son graduate high school and get married and graduate college and be a doctor and do all these wonderful things. So it's to me when I get that annual CAT scan it's just like...

Dr. Harpham:

Well how DO you feel at your checkups, Jennifer?

Jen:

Um. Well, when I go for my annual CAT scan it's just that anxiety. I get this scan and it's that few days between the scan and them calling and saying everything looks great, and sometimes I'd go ahead and call them before they'd call me and say, Well can't you just tell me what it says? But it's like once a year and it's just that one time that it's concentrated. On a daily basis, I don't think about it. I don't sit around and say Oh, I've got a tickle in my throat, maybe I have a lump, and all these other things. But it seems when I get really sick, I had an incident a few weeks ago when I had a kidney stone, and the doctor called me and said, well, we see this mass in your kidney, and then they didn't call me for four days. So I called them up and I said, You do NOT tell a cancer survivor they have a mass AND NOT CALL THEM FOR FOUR DAYS! I went nuts on them! I'm like, You don't use the word MASS! I was just so angry. So things like that, incidents that may set me off, and you know, and then of course I have family that's saying, Well, what's going on? What's going on? Did you get the results?

Dr. Harpham:

So does that feed your...

Jen:

So that feeds my anxiety like you wouldn't believe. I have a mother I have a mother in law, I have a boss who's like a mother to me, I mean, it's like all these people calling me saying, Did you get the results yet?

Dr. Harpham:

Well you know Jennifer, in your case, although no patient can get a guarantee that your cancer won't return, your doctors probably consider you cured now.

Jen:

Oh, absolutely.

Dr. Harpham:

And cure means that your chance of this type of cancer coming back after this long is vanishingly small. Probably the same as if you'd never had it.

Jen:

You know, I know that in my head, but it's you know, I understand that and I can comprehend that and I'm trying to deal with that, but at the same time, then why do I have to go for a CAT scan every year? Why do they....

Dr. Harpham:

You bring up exactly the key issue. You're going for a checkup because it's not guaranteed. If they could guarantee that you were cured or you were in remission, you wouldn't have to go for the checkup.

And I remember my doctor, my oncologist, saying to me that you know, you can consider yourself cured and you can be walking around with thousands and thousands of cancer cells in your body, right now, but we will consider you cured. And it could be twenty years down the line and you will still possibly have these cancer cells in you. And I don't know why he would say that. It sounds like a terribly morbid thing to say to someone.

Jen:

Exactly.

Dr. Harpham:

But well, one way to look at that is that your body does have the ability to have cancer cells and be fine.

Jen:

That's true. That's a good point.

Dr. Harpham:

And the key is, that you are fine. Not whether you have one cancer cell or twenty cancer cells, but that you are fine.

Lisa:

I wanted to add one thing about part of a way that I changed my thinking. I think that I grew up afraid of a lot of things when I was a kid and there was a girl in school, who, I now look back and know that she obviously had cancer. At the time I didn't understand was the way that she looked with losing her hair and puffy face and things like that, and I just couldn't figure out. I hung out with, my two best friends were huge hypochondriacs, and I couldn't figure out how I was going to get through my adolescence or young adult life without having something terrible happen to me. How was I going to get this, was my body going to get me through this without getting cancer or something terrible like that. So I think that my thinking had a whole lot to do with my getting sick. I don't think I gave myself cancer, but I think that you tell your body something enough times and it begins to believe you. So I kind of feel like, if I had that much strength, that much more strength knowing that I'd had cancer and what my mind could do to my body, then I think I can reverse that thinking. And that's what I did when I was getting well, too. I used to think, well, if I had any part in creating these cells in my body and kept confusing my body enough then I can have that much more power being aware of what I'm doing and conscious of my effort to get rid of the cancer and not have it again. And not on a huge deep level, but that was just something that a came to me when I was sick that I thought I could have been partly responsible for it.

Dr. Harpham:

There's a very popular topic as you know in a number of books. And there is a mind-body connection, the mind affects the body. But the mind does not control the body. And it's a matter of using our minds in healthy, healing ways. But not bearing the undeserved burden of blame if somebody does get cancer or has a recurrence, not to feel like Oh, my gosh, I wasn't thinking positively enough. It's hard enough to deal with cancer, but to deal with feeling guilty about having caused it yourself is an unnecessary burden.

Lisa:

Yeah, and that's an issue that I deal with early on, that you know, when you're not thinking rationally or clearly. And I think that now I just try and know that 364 days a year I feel like I'm fine and that one day that I have to go get a checkup. I try not to let all of these other feelings that I used to have years ago come to the surface and make it that much more difficult.

Dr. Harpham:

Just real quickly before we leave fear of recurrence and checkup anxiety, I'd love for you to describe what exactly it feels like. How do you know when you're having, Urp, that's my checkup anxiety, or Urp, that's my fear of recurrence. What exactly do you feel. Lisa?

Lisa:

I think that I feel like, oftentimes Wesley has to point it out to me because my mood will shift, or some I don't seem right. So he'll offer, he'll say, You have a checkup next week and I think you kind of need to check your feelings and see if that's what bothering you. And nine times out of ten I look throughout the week and it's kind of like this burden on your shoulders that you don't know is there until it's lifted. So it's like you go in for your checkup and they tell you everything's great and then you feel that, Gosh, that really was bothering me for the last few weeks.

Dr. Harpham:

Even before your checkup? Does it make it easier when he says, Well, you know this might be because you're nervous about your checkup, does that seem to help things at home?

Lisa:

I think so, because he was right there in the thick of it with me every single day going through it and so he knows me well enough to know that these are things that we still have to deal with. And it's something that I have to learn how to deal with the rest of my life. And you know having someone who was right there with me going through it to remind me that this is kind of how you get every time it's about to happen.

Dr. Harpham:

Melanie, does that happen to you? Do you kind of say, Oops, it's that time. Do you recognize the feeling of checkup anxiety?

Mel:

Actually I am very fortunate with that, because I no longer have to go for my checkups.

Dr. Harpham:

All right!

Mel:

Yeah, my oncologist let me go last December, this December it'll be a year. And he said that I no longer have to come back to him for checkups.

Dr. Harpham:

How does that feel? Not going back?

Mel:

Wonderful! That I don't have to go back. I do have to see an endocrinologist once a year though just for thyroid checks. I had radiation in the thyroid area. I have to go for thyroid checks and to have the levels.

Dr. Harpham:

Now do those checkups bother you at all?

Mel:

Actually they do. I just went for my first one a couple of weeks ago, and he did an ultrasound of my thyroid and he drew the thyroid levels, and waiting for the results of that were kind of tough. I was kind of iffy about that because that was the first time that the attention had been focused on the thyroid, not the Hodgkin's, not the cancer if any effect had been taken on the thyroid so my focus kind of changed but there was still that uncertainty. Maybe he's gonna come back and say something's wrong with the ultrasound or the blood levels.

Dr. Harpham:

What did you say to yourself to tame that anxiety? What have you learned from all these years of dealing with cancer to help you tame that fear about the checkup of the thyroid?

Mel:

That fear, I just kind of pushed it away, I just pushed it to the side and said, this is something I have to do, I have to get through this checkup, so just swallow it and go do it and if we get any bad news or hear anything bad, then we'll go forth then and do what we have to do.

Dr. Harpham:

So we assume it's good news unless we hear otherwise. And what about Jennifer?

Jen:

Basically I just wait it out, and if they don't call me ahead of time I place the call myself.

Dr. Harpham:

What about before the test? You say the worst time is between the tests and waiting for the results.

Jen:

I mean the test itself is like Lisa said, getting the injection, the iodine and you know taking that barium is just so nasty, it's just...

Dr. Harpham:

Well how do you feel when you're anxious? How do you recognize that, "Oh, this is just me being anxious about the results?"

Jen:

Well, it's nervous tension, and waiting for the phone to ring, and you know..., and it's you know, basically just trying to keep yourself busy and not think about it.

Dr. Harpham:

So distraction works for you?

Jen:

Distraction works very well for me.

Dr. Harpham:

And what about relating to your husband and your son? Do you say, "Hey, waiting for my test."

Jen:

Usually my husband knows that, I mean we've been going through this for nine years now that we've been doing this. Usually he's pretty good about it, recognizes, will bring home flowers when I get like clean bill...

Dr. Harpham:

So it's something special to look forward to.

Jen:

Something special to look forward to and so, it's usually, obviously, it's always been good news. So it's not something...

Dr. Harpham:

And good things help tame the fear of recurrence. You know, you get a couple of good checkups under your belt and that tames the fear of recurrence.

Jen:

Absolutely.

Dr. Harpham:

So it's this whole idea of recognizing when you have fear of recurrence, giving it a name, knowing that it gets better after the checkup. I hear some of you use distractions to help or put it out of your mind, and just getting through the day until you get the results.

Dr. Harpham:

Another topic of great importance from diagnosis on is that of creating a supportive environment. Lisa, your new book, "Only When I Sleep", focuses on the support you received from your family. Can you share with us your feelings about the role of support and how to get it?

Lisa:

Well I think in the dedication in my book I dedicate it to my parents and to Wesley. And for my parents I just said that I'm very lucky to have the people who brought me into the world also help take care of me in the world. And Wesley and I were with my parents through treatment because we'd gone to visit them during the Christmas holidays when I was diagnosed and decided to stay in California and go through it with my family. I was very fortunate to have most of the people in my life have been in my life for fifteen or twenty years, including my husband. My parents have been married for thirty-plus years and created this real life of stability, and we just really called upon our family and friends to gather around us and give us strength. And we weren't afraid to ask for something and when somebody asked what we could do, we thought of things that they could do to help us. And in the end of my treatment we had a huge "GOT WELL" party that we had thought about all throughout treatment that we would throw at the end, and invite everyone who'd sent a card or made a phone call to support us. And just about all of the 112 people that we invited came. 108 came, actually, and it was a 12-hour party with food and music and a lot of fun, and just really trying to include everyone. And I have family who've read the book now and said "we thought we were in it with you every day, and we read now that maybe you felt alone sometimes." And that was just my way of...

Dr. Harpham:

Well Lisa, let's go back to basics. Why was support so important for you?

Lisa:

Well, I think that every single thing I've ever done has been with the help of my parents or you know the support of my family, and this was just something so big that to expect to do it alone would have been really ridiculous to me...

Dr. Harpham:

What kind of support did you need?

Lisa:

For example, Wesley went to pretty much every single appointment I had, and during therapy I didn't just go by myself, either Wesley or my mom, or AND my mom, and a cousin or an aunt, we did it together. It was a long, seven-hour process and we would sit in a room and go through chemotherapy together, so that they understood what I was going through. Another huge thing that I needed was when I was going through chemotherapy, there were these blue note cards that had what the common side effects of this drug and that drug and on the back of that card it was if you're experiencing these, these are more serious, you need to contact your doctor. Well, for me, I thought, if I read the back of that card, everything it says, I'm going to think I have at all times. I'm going to be worried about it. So that was something that Wesley and my mom researched and knew about, and certainly if I experienced anything out of the ordinary I would let them know, but that was just how I was able to deal with it, because some of these more serious things that could have meant I was bleeding internally or these other things that were just really big.

Dr. Harpham:

Okay so it was important for somebody to be able to report warning signs but you felt emotionally you couldn't do it, and by having the support of family, they could do it for you.

Lisa:

Yeah, just looking out for me.

Dr. Harpham:

And having company at your checkups and physically helping you get to checkup.

Lisa:

Yeah. When I had to have Nupagen, I couldn't always stick myself. Wesley would stick me with the needle and I would push the medicine in, just things like that.

Dr. Harpham:

How did they help you emotionally, Lisa?

Lisa:

I can remember a lot of times, especially in the beginning, saying to Wesley or my father, especially to Wesley, you know, Do you think I'm gonna get through this, do you think I'm gonna survive. And always, quick as a flash, without skipping a beat, he would answer, Sure you're going to be okay, there's no doubt in mind you're going to survive this, and I really believed him. And just counting on that..

Dr. Harpham:

Kind of your cheering squad. And keeping your confidence up.

Lisa:

Yeah. Making me feel like in six months I was still gonna be here.

Dr. Harpham:

Now what were the hard parts of getting support from your family?

Lisa:

Well the hard part is I was in my childhood home, which is also the benefit, but the hard part was that I was married now and I wasn't a kid and I tended to fall back into all those childhood things, and your parents want to take care of you when you're sick and then you have your husband who wants to help take care of you, and you're still your own individual person. Felt smothered sometimes and Dad who always told me, Never say I can't, and you know sometimes there were things I couldn't do and he didn't always understand that.

Dr. Harpham:

A little bit of role confusion maybe a little too much rah rah, today.

Lisa:

It's funny because we were the same people throughout it. Just our traits and attributes in our family were amplified ten times because of this drama and traumatic experience.

Dr. Harpham:

Did you have any trouble asking for help. Was there anything that was difficult in asking for help?

Lisa.:

No. I always felt like I could go to my family and definitely Wesley for anything that I needed, and still do now. It's kind of like Wesley and I are still in that same corner, we let everyone else move on with their lives and they certainly know when I have a checkup and things but if there was ever anything I needed to talk about, it is something I would definitely do and not try to withhold it and deal with it myself.

Dr. Harpham:

So basically the ties are strong, you could ask for support when you needed it, but when you didn't need support, you were able to say, Okay, I'm on my own.

Lisa:

Yeah. And that was harder than asking for it sometimes, because they try and help you so and you don't want to appear ungrateful but sometimes you just had to take a step back and you know, ask them to back off a little bit.

Dr. Harpham:

Jennifer. You were living on your own as a young adult before your diagnosis and then you moved back in with your mother after your transplant. Can you share with us some of the pluses and the minuses of accepting support from your family?

Jen:

Well, prior to the bone marrow transplant, if I can just back up a minute, I was living with a college roommate, whom we ended up remaining roommates after, and getting support from friends, it's tough to have to ask one of your friends to deal with that. I mean, our lives basically changed. We were having a great time, living on our own in this wonderful apartment and then I kind of put a damper on the situation and you know, was getting rides to chemotherapy and she was driving me and picking me up and you know, we didn't have a lot of company on the weekends and I mean it was just a lot of changes there. Moving in with your mother...

Dr. Harpham:

Well, before you go to that. This shift in your relationship with your roommate, you're two single young adults and suddenly you're dealing with life-threatening illness and a lot of inconvenience and discomfort. How did that affect you emotionally, in terms of how you related to your roommate, and what sort of tensions or silver linings were there from this change in your relationship with your friend?

Jen:

Well I mean I know it was hard on her and it was equally hard on me having to ask her to change her life and not you know, to help me to support me more to spend more time at home, to, you know, my parents lived in another state, I mean, my parents were in New York and I'm in Connecticut, so my closest relative was over an hour away by car and to have to rely on another young adult to ask for a ride to chemo or to pick you up or to basically help you get into bed and bring you a bucket when you're sick, and not have company over and late nights and partying and you know keeping the music down and you know just having someone there, I'm sure it was a major inconvenience for her and there were times when you know I felt she was being selfish and she felt I was being selfish.

Dr. Harpham:

How did you deal with that?

Jen:

Basically just fighting it out and we did talk about it. We'd been roommates for almost five years at the time so we weren't just kind of thrown together, I mean we were very, very good friends, and we still are. But it was a very trying time and it wasn't until long after I recovered that we kind of sat down and she said to me you know, I realize that I was not as supportive towards you as I should have been or could have been, and she actually apologized to me, years and years later, I mean we both had children by that time. And we sat down as adults and parents and said, you know, I'm sorry if I did this and I'm sorry if I did that and we really we took years to kind of get over that feeling and that.

Dr. Harpham:

Both of you kind of did the best you could at the time but as you grew older you kind of looked back and said, Jeez...

Jen:

If we had to do it again....

Dr. Harpham:

Now do you think guilt played any role in your relationship? Guilt about what was happening or it sounds like there were some regrets about how you both dealt with it.

Jen:

Yeah. There definitely was. I mean, I felt like I was taking things away from her and her love of life and to have, I mean I had a best friend that had cancer and to have to see someone that you think is so much like yourself and put yourself in that situation, I'm sure she saw things through my eyes, and to be frightening to her, to say Wow, you know, if this could happen to Jennifer, it could happen to me as well. And she was also a smoker and I asked her never to smoke in the apartment. And I mean, that didn't go over too well. And there were a lot of changes that I had to ask her to make and that she wasn't happy about making, so there were some hard feelings at the time. And then when I moved out and went home after the transplant to see my mom and it was we grew apart for a little while just because of geography, but we became pretty close afterwards. And we're still pretty close friends.

Dr. Harpham:

Well, that was gonna be my next question to you, Jennifer: in what ways do you think asking for support and accepting support changed you?

Jen:

Well, it kind of takes you back a few steps. I mean to live on your own for a couple years and then have to go home and live with mom and live by a whole new set of rules and say, well, I don't wash my own dishes, I'm not washing dishes here, you know, silly things like that. And having to be babied and having to have people cater to you. That doesn't work well with me. I'm more of a caregiver than a care taker and I can't...

Dr. Harpham:

But what are your feelings about accepting support when you are sick. I mean, you had to accept support, you were very sick. Looking back what are your feelings now about the benefits of accepting support when you need it.

Jen:

Well, you have to. I mean you absolutely have to do what is gonna get you through and you know if the people are there for you and they're offering something to you, you should absolutely take it. My thing was, well, I can do this thing on my own, I'm a strong person, and you know, I don't care how sick I feel I'm gonna get up and do this and I tried to be as strong as I possibly could and not accept people's help. And I don't know why or what made me feel that way.

Dr. Harpham:

What do you think was the effect of that? For you and for the people around you, when you tried to do it on your own?

Jen:

Well, obviously pushed people away, and you know I was like, Well, I'll do it myself, I'll take care of it, I'm a big person about saying I'd rather do it myself than have to ask somebody to do it, it was tough. It's tough to change your beliefs and your thinking you have to change your entire way of life.

Dr. Harpham:

Wow. Your situation is completely different. It's fine to be independent when you don't need help, but when you have cancer, many times you need help.

Jen:

I know. And you learn this the hard way, because there are so many things you just can't do, and you wind up accepting help. It's a very humbling experience.

Dr. Harpham:

But accepting help shows strength.

Jen:

Absolutely.

Dr. Harpham:

It gives you every advantage and what everybody wants is for you to get better. And if accepting help helps you get better, you're doing a good thing. What about Melanie? How has asking or accepting support played into your survivorship?

Mel:

I never actually had to ask for support. I have a wonderful family and a wonderful group of friends so asking was never an issue for me, it was always abundantly provided. Always there for me during the treatments and during the bad times always there for me, especially mom and dad and my two older sisters. Of course my two older sisters I could talk to them about more things than I could my mom and dad. But they were always there and I could just, whenever I needed an ear, just to talk to or shoulder to cry on, they were just there for me, and I never wanted for anything. It was always provided and I guess that I'm fortunate to have such a wonderful family...

Dr. Harpham:

Yes you are. You also mentioned the idea of spreading the support, not just leaning on one person but like your sisters for something, your mother for something else.

Mel:

Right. And my friends of course I was 16 years old, I was on the cheerleading squad, high school cheerleading squad, and cheered all the way through junior high and high school, and they were very supportive of me, also. We were going to a lot of competitions and all and they were always there for me, sending me cards, coming to visit me, and still involving me in all of the activities, even though I could not physically be there for a lot of them. They were involving me and coming and telling me how everything was, and what was going on so I was still involved in everything and the support was still there, even though I was not able to do everything physically that I had done before. And even now seven years later, almost eight years later, I still never want for anything, any kind of support, it's always there for me.

Dr. Harpham:

Well, that's wonderful. That's wonderful. Let's just shift gears a bit, and talk about making treatment decisions with your doctors. From the moment there's a suspicion you might have cancer and through all the phases of evaluation, treatment and recovery, you and your doctors have to make decisions. How should be evaluate this problem? How should we treat the problem while we're waiting for the tests to come back? How should we treat the disease once it's diagnosed? Should you have a second opinion? You develop a symptoms and you have to make a decision with your doctor: do we worry about this symptom? Do we wait and see if it gets better? What should you do about your diet? Work and school? Exercise? And all the other details of your life. So we're gonna talk about making decisions with your doctors. Jennifer, I understand you enjoyed a very good relationship with your doctors. You started to tell us the story of when you found out you'd need prenisone and you were gonna get chemotherapy, so you were gonna be fat and bald. Can tell us about that?

Jen:

Yes. Well, I was diagnosed in the hospital and wound up in the hospital as you mentioned earlier, and it took them about 2 weeks to diagnose me, they finally did an open lung biopsy and determined that it was cancer and they immediately started chemotherapy, I mean I didn't speak to them about any, I didn't make any decisions. They said, okay we're gonna start chemo right away and you're gonna be put on prednisone, you're gonna gain, it's gonna make you gain weight and you're gonna lose your hair and I looked at him and said, I'm gonna be fat and bald! And my doctor, who is bald, said, well I'm fat and bald. And I said, You're not fat and bald. That was, he's amazing he's an amazing man, and yes I did get fat and I did get bald. I'm no longer fat NOR bald!

Dr. Harpham:

Well how did you deal with making treatment decisions?

Jen:

You mean as far as chemotherapy or radiation or anything?

Dr. Harpham:

Or any of the decisions that come along the way. Such as you develop a pain in your arm and you go to the doctor. How do you deal with deciding how much you should evaluate it, what you should do about it? Your communication with your doctor.

Jen:

My communication with my doctors is just wonderful. I mean my internist, my GP doctor that I've been seeing for almost ten years when I was diagnosed was the one who came in and said to me, and he sat down and he actually cried when he told me I had cancer. And then he found this oncologist for me who was just amazing, and in turn found the hematologist that did my bone marrow transplant. And I never questioned anything that anything of these three doctors ever told me or suggested, I mean they've all been very straightforward with me, they've always answered all my questions,

Dr. Harpham:

So you really felt like you could trust their information, their advice- and they were being a team.

Jen:

Exactly. I felt like I've been in very good hands and I never, I very rarely question anything that they do. And if I need to see another doctor, like when I had the kidney stone I had to go see a urologist, and they know me well enough to refer me to someone that they know is going to work well with me. I mean, I'm not a good patient, I really am not, I mean I don't like to wait for doctors and I know exactly what's expected and you know they know the personality that I need and you know, right down to everything. And I really don't have any problems with what their recommendations are.

Dr. Harpham:

Again, there's a tremendous sense of trust and confidence and it sounds like things have really gone pretty smoothly for you.

Jen:

Yes, yes it did..

Dr. Harpham:

Now did you get any flak or pushing from friends or relatives to do more research on your own or question your doctors more, was that ever part of your picture.

Jen:

Well it was like I said, my family lives in New York and I was in Connecticut at the time and the hospital that I chose, I don't know if we're supposed to name the hospitals or doctors or anything, but the hospital I chose in Connecticut wasn't quite comfortable with and I didn't know if I should go here or move back to New York for the transplant and you know not just for the recovery afterwards. And I went to visit the hospital in New York near my mom and I walked in and I just said, forget it. I don't want to be here. It was not a place where I would want to spend a month. I mean the bone marrow transplant, I was in the hospital for 35 days and when I came back to Connecticut and met the hematologist there and toured the bone marrow unit and you know my mom and I both looked at each other when we met this doctor and we said, this is it. The man is going to save my life. So I had some family and friends from New York that thought that I should be down that way, but it wasn't a matter of geography at that point, it was a matter of who's the best and what hospital is gonna treat me the best.

Dr. Harpham:

Well, let me switch to Lisa. I understand you had a question about bone marrow biopsy, and that's basically a diagnostic test, where the doctor numbs a small area of skin and the area of bone beneath the skin, it's usually in the back hip bone, and then the doctor sticks a needle into the bone and removes the sample of marrow. Lisa, you found this procedure particularly painful, and were wondering why some doctors medicate their patients for this procedure while others don't. why don't you share with us your thoughts about bone marrow biopsy and how you dealt with this specific issue with your doctors.

Lisa:

Well I think the main thing that I had to deal with was I asked before the procedure I asked my oncologist, it was the first time I'd met him. I met him that day and that afternoon I was having the biopsy and I asked him if it would be painful, and he said you would experience pressure and there is some pain. I experienced excruciating pain. Now that I've had a child, the bone marrow biopsy to me was more painful than childbirth. And I didn't have an epidural, for either. And so I just didn't understand why there couldn't be more drugs administered or at least the option for it.

Dr. Harpham:

Well, have you had bone marrow biopsies since then?

Lisa:

I had to have another one when I switched doctors after going through treatment and returning to Texas.

Dr. Harpham:

Okay then how did you deal with that in terms of asking for medication. What did they do and how did you deal with that?

Lisa:

Well, the thing is I knew from my own bone marrow biopsy when the doctor left the room the nurse said to me, I asked him if I could give you more Demerol and he wouldn't let me. So I knew that there was more that could have been done to make me comfortable, and I'm not big on, I mean, Benadryl makes me higher than a kite, so I'm not really comfortable taking a medication and losing that feeling of control, but as far as the local anesthetic or what could have been done to reduce the pain there. When I had to switch doctors because I went through all my treatment in California and then moved back to Texas, so I had to start with a whole new team of doctors and they wanted their own baseline, and that included a bone marrow biopsy. And I just really freaked out. I remember in the lobby I just started crying and I told my husband I'm going to call my dad and get on a plane and go back to my physician in California, every three or four months for the rest of my life, I'm not going to do this. Because I was told the first time as long as there isn't any cancer involvement in bone marrow and you go through treatment and you're okay, you'll never have to have this procedure again unless there's recurrence. So here I am thinking, I just had this test, I just was told I'm doing well and I have to repeat it. And it was just really tough, and after 3 days of dealing with a patient advocate over the weekend, she convinced me that I needed the procedure in order to get the remission word from this physician which I would need for medical reasons and everything else involved with having had cancer, and she told me that I could have Ativan during it, which wouldn't necessarily reduce the pain, I'd still know what was going on, but I wouldn't care as much. And at first I refused because I refused Ativan during chemotherapy too because I just wanted my wits about me and I was afraid of how I'd feel with it, so I decided that I would take the Ativan.

Dr. Harpham:

So you talked about ways to get around your difficulty with the biopsy. And you found a better way for you.

Lisa:

For me, yes, because and the other thing is this cancer center that I had to have the procedure done the second time, I was in a room where people were coming through there all day every day getting bone marrow biopsies. So it was done by someone who'd done it a lot, where I was treated in a small area in northern California, it wasn't something that was done very often. So, I got to have it the second time done by somebody who knew a little bit more about what they were doing and did this procedure all day every day.

Dr. Harpham:

Well, let's talk about the issue, Lisa, of making decisions with your doctors. How do you do that now?

Lisa:

Well I'm a lot more my own advocate...

Dr. Harpham:

So you speak up.

Lisa:

I do. I speak up. If I'm sitting longer, you know the sign that usually says if you're waiting longer than 15 minutes please let the receptionist know. I do that. I don't think it's fair that we have to wait 45 minutes for an appointment that we are on time for. The very first appointment I had with my oncologist when I was diagnosed, I knew from all the literature that it was standard for my staging and my type of cancer that I have chemotherapy and radiation combination. So when I first went to see him he said, these are my thoughts, I think the combination work better for you because of the mass and the lymph nodes in your chest. Radiation alone would harden your arteries and so on and so forth, but he was still giving me the choice. He was still including me in the decision. Just like when I had the guidance scan at the end to save it, chemo had cleared all the cancer that they could see in a guidance scan. I just assumed the next step was radiation, but he said to me, how do you feel? Are you ready to move on to radiation?

Dr. Harpham:

Was that good or bad for you?

Lisa:

I think it was very important for me...

Dr. Harpham:

So you felt equipped to deal with the choices he gave you?

Lisa:

Right. Because I read everything I could get my hands on. I did the research, I had the information, and the information he was giving back to me was everything I'd read everywhere else. So I felt like he was equipped to make that decision, too, and he was giving me all the information he could.

Dr. Harpham:

What was the advantage to you of being involved in the decision?

Lisa:

Because I felt like win or lose, live or die, that I contributed to the process, that I was involved, and I think it gave me something to feel responsible for, you know that I was...

Dr. Harpham:

And that was a good thing for you?

Lisa:

For me it was. For me it was being involved and feeling like my opinion mattered and that I wasn't just another cancer patient or wasn't just a number, that my thoughts and my concerned mattered.

Dr. Harpham:

Did you ever have a situation where you felt like, "Oh, I didn't make the decision, I don't want to do it either because you were sick or you felt bad or it was too complicated?"

Lisa:

I think when we had to introduce Nupagen because of the white blood cell count, I wasn't able to stay on the every two week regimen of treatment because my white blood cell count wasn't coming back up enough and so for the first two cycles I was you know a week delayed, and I understood that that wasn't good in terms of, you know they had to keep it.... and so he came to me and said we discussed it with your general practice physician and we think that Nupagen was something that would work for you. Again, bring it up was something, I mean, had I said no, I think he would have kept me in the office until I said this was what I needed to do. But..

Dr. Harpham:

But again, you heard the strength of his conviction about it so you just let go and said okay, fine.

Lisa:

Right and my family doctor, who chose the oncologist to send me to, had already discussed it with him at a dinner party, and they had decided it was the best thing for me and I knew that getting through treatment in the shortest period of time to combat the cancer cells over and over and over again, was very important.

Dr. Harpham:

So, again I hear the sense of a tremendous