Contents

1

Introductions

2

Choosing and working with doctors while relocating to an unfamiliar surrounding

3

18 months of symptoms and several misdiagnoses

4

The power of words in people's diagnosis, evaluation, treatment and recovery

5

Humor

6

How family played into treatment and recovery

7

The issue of infertility

8

Closing statements

Introductions: Dr. Harpham, Joni, Debra & Cheryl

Listen With (4 minutes 31 seconds)

Dr. HARPHAM:

Hello, and welcome to American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham today we will be talking with three women, ages 35 to 45, from across the country, who have completed their treatment for lymphoma or leukemia. As a doctor of internal medicine, and also a ten year lymphoma survivor myself, I'm ready for a great discussion, as we talk about issues such as treatment choices; how do you find out about and make, the best treatment choices? Survivor's guilt? What is it and what are some of the ways to deal with it? Complementary therapies. What are they? And what is their role is cancer care? The effects of surviving. How has your cancer experience altered your direction in life? Infertility after cancer treatment. How do you deal with this loss? When your diagnosis is uncertain, how do you get a correct diagnosis when confusion arises?

First we'll touch bases with each of our guests, and then we'll open it up for some discussion. Right now I'd like to introduce you to Joni from Spring, Texas. Joni, you've been in remission for over five years from Non-Hodgkin's lymphoma. We hear about women's intuition, but in this case, it was your husband's gut feeling that led to your diagnosis.

JONI:

Right, and I think if it hadn't been for his, first of all his intuition and then his bulldozing through the managed care system that we were in, I'm certain that I would be dead. Because I had gone to the doctor a few times, thinking that I had mono. And then one day I was standing braiding my hair in front of the bathroom mirror and Gary came over and was kissing my neck, and said, "What the heck is that?" And not the most romantic thing to whisper while kissing my neck, but he just had a gut feeling that there was something wrong. And even though I was chiding him for being an alarmist he would not let it drop and when the doctors continued to kind of shine me on, and our insurance company refused to authorize a biopsy, saying it's just swollen glands, they were apparently the Christian Scientist HMO, any sort of a medical intervention is against their religion, so they wouldn't authorize it until Gary just you know kept bulldozing until he finally got me into the hands of an ear, nose and throat doctor who insisted on the biopsy and it was Non-Hodgkin's lymphoma.

Dr. HARPHAM:

And then what happened?

JONI:

Well, when he told me it was lymphoma, I said, "Oh, thank goodness, we thought it might be cancer." (all laugh) I had never heard of such a thing, and so we instantly went to the library, which was a mistake, because so much of the information was outdated, and so hence very terrifying, giving these really terrifyingly low statistics for survival of the aggressive form of lymphoma, and we felt a little bit better though once we got into the hands of the oncologist and got the best information, which of course came from the internet, from places like the Cure for Lymphoma Foundation and the Lymphoma Research Foundation has very good current information that reassured us a little bit. And even though I initially refused chemotherapy and had thought that that was something I would never do, I did do it, and after an aggressive course of chemotherapy I had my first remission, and that lasted a while. And then we got into some of that confusion that you're talking about. There was, things began to look funky on my scans, and I opted to explore some complementary therapies at that point. And I have been really grateful and glad for those decisions that I made during that time to not do radiation, to embrace some of the complementary therapies, and I am a stronger, healthier and wiser person today for the whole journey, I think.

Dr. HARPHAM:

Well, we're going to talk in greater depth about dealing with a confusing diagnosis or the road blocks after we have our other two guests. So, keep those things in mind.

Dr. HARPHAM:

Let's spend a few minutes with Debra from Norcross, Georgia. We heard that you survived both Hodgkin's lymphoma and more recently, breast cancer. And I understand that you were moving across the country while going through your diagnostic evaluation and treatment. How did you handle choosing and working with your doctors while relocating to an unfamiliar surrounding?

DEBRA:

Well, it's a good story in itself. What had happened was ten years ago June of 90, I was living in Atlanta. I'm originally from New York and I'd been living in Georgia for about eight years, and so I moved to California. I had swollen lymph glands in my neck but I never thought anything about it, and I had a rash on my leg, and again I didn't think anything about it and I went to see a homeopath about the rash and he gave me cream for it, never did any tests on me. He was a naturopath and a homeopath. And it happened that I was moving to California and five days before my move I went to my gynecologist for my annual checkup and he's the one that found out, noticed something wrong with me the second he walked in the door. And so I went he made an appointment for me to see an internist the next day but I was moving to California four days later, and they wanted to do a biopsy. The internist had mentioned Hodgkins disease to me as his sister had just been diagnosed with it. I mean, I had never even heard of Hodgkins disease.

Dr. HARPHAM:

So you were evaluated in Atlanta or California?

DEBRA:

California. What had happened was I didn't have the biopsy in Georgia, I was moving to California, I didn't care. I always wanted to live in LA and I wanted to get a job in show business, I was pursuing a dream. And so I got to California, I knew absolutely nobody out there, I didn't know any doctors and I would just pray to god, you know, I'd made a promise and I was gonna keep it, that I would get this taken care of. And was walking out of the health food store and saw a sign for a surgeon. And contacted him and he couldn't help me in terms of the biopsy but send me right away to another surgeon who could, turned out to be a plastic surgeon who biopsied my neck, and I ended up doing the research myself in the library on Hodgkins disease so went back to the surgeon to have my stitches removed, and I discussed with him about Hodkins disease and he said, you know more about it than I do. I'm a plastic surgeon. I don't know anything about Hodgkins disease.

Dr. HARPHAM:

Well, just briefly, how were you treated and what happened after that, you it can kind of take us to the present?

DEBRA:

Oh well what happened was I went back to New York to be with my family. And I got treated with radiation in New York and I had my spleen removed. And so far, no problems.

Dr. HARPHAM:

So the Hodgkins was a one time thing for you?

DEBRA:

So far.

Dr. HARPHAM:

And then what happened with the breast cancer?

DEBRA:

The breast cancer I got New Year's Eve 1999, and they don't know, they all have theories it could have come from the radiation. They don't know. Because I had radiation from my chest up, and they just don't have any theories. Everyone has their own theories about it. I ended up having a mastectomy because they were afraid of giving radiation.

Dr. HARPHAM:

Because you'd already had radiation.

DEBRA:

Yeah. So, and I've been doing holistically, on a serious holistic basis for the last five years, even though I did holistic minded and spiritually minded for twenty years.

Dr. HARPHAM:

Well, that's gonna be a very important topic that we're gonna come back to. How are you doing right now?

DEBRA:

So far, so good. I did have a scare a couple months ago that I had cancer in my other breast, but that was a dream it got checked out and so far I'm fine.

Dr. HARPHAM:

Oh good, well, we're gonna come back to you. Thanks so much Debra.

Dr. HARPHAM:

Before we open up for the round table discussion, I'd like to introduce our third guest, Cheryl, from El Centro, California. Cheryl, you went through about 18 months of symptoms and several misdiagnoses, one misdiagnosis occurring after you checked yourself into a hospital. Why don't you tell us your story.

CHERYL:

Okay. My experience started back in 84. I was living in Florida at the time and working where I did a lot of travel. I was about 24 years old. It was one of these dream jobs that everybody my age really enjoys, you went from city to city, I was a party girl, those types of things, but I started developing a severe cough and what I called the night fevers, where I would wake up and the sheets would be saturated. Because of the cough, I started seeing different doctors and was diagnosed with everything from just stress-related, normal things that stress brings on, just tired, exhaustion, those type of things, to having walking pneumonia. After losing probably about thirty pounds and having coughing jag that I started to hyperventilate and those type of things, I checked myself into the hospital. Was checked in as anorexic. When the doctor came in the next day, started his physical exam and found a huge lump in my throat. Did a biopsy and I was diagnosed with Hodgkin's disease.

Dr. HARPHAM:

Okay. And then how were you treated?

CHERYL:

Fortunately I had a wonderful oncologist that made up for a lot of the previous people. He was wonderful, told me not to read anything, number one, number two, if I had any questions, he gave me his home number, gave the number to his nurse, said to call him, they put me on prednisone to try to bring the swelling down from the tumor in my neck. I also had a mass in my chest that they discovered. They sent me home to prepare for a laparotomy. When I went in to have the laparotomy, they decided not to do it because, I'm a dreamer, and I'd had a dream that I was literally dying on the table, so they did. They took me into the operating room and I was real insistent that I talk with my oncologist first. He came in and said, No, you don't have to do it if you don't feel well about this. I was basically fighting them all the way. I said, you know, I just had this dream. They all thought I was crazy. He took me away, did a few more tests and discovered that the prednisone had made the tumor grow instead of shrink, so I didn't have any of the staging, they just started the chemotherapy immediately.

Dr. HARPHAM:

Okay. And then after that you had radiation to the chest for the mass in your chest? (she says Yes). And how did you do after you finished your treatment? Was the Hodgkin's gone?

CHERYL:

Well, as soon as they started the chemotherapy for the Hodgkin's disease my blood counts bottomed out and never fully recovered. I took a little longer than six weeks because I actually had treatments in Florida went to Maryland for a brief period, and then came back. My doctor in Florida was very aggressive. He felt that no matter what my blood counts were, they treat. When I went to Maryland they wanted to wait for my counts to come up, so it extended it a little bit. After the course of chemotherapy, they started the radiation, just to the midiastinum and that I did okay with. I had gone back to work part time on desk duty basically. They wanted to start it to my abdomen. They started one course and I had such severe nausea and diarrhea that I stopped it myself. For the next several months, they considered me pre-leukemic, so I was constantly going in and being checked through bone marrow biopsies and those type of things, because my counts never fully recovered.

Dr. HARPHAM:

And they were wondering if it was the effects of the chemotherapy on the marrow or was there another problem going on.

CHERYL:

Right. They were trying to determine if it was a secondary caused by the chemotherapy combined with the radiation or if it was something that already existed but the tumors had presented themselves first.

Dr. HARPHAM:

Right. So then I understand in 1985 you were actually diagnosed......

CHERYL:

With acute myelogenic leukemia.

CEHRYL:

With acute myelogenic leukemia.

Dr. HARPHAM:

And why don't you tell us briefly what happened with that diagnosis and what they told you and what happened?

CHERYL:

Okay. Basically, what had happened was as I said I'd been termed "pre-leukemic" for quite some time. My doctor decided to put off transfusing me as long as possible, and it just got to the point where my hematocrit had dropped to such a level that he felt it would be time to start transfusing me. So I was scheduled to go in to have a broviac catheter at the time, put in and woke up one morning with blood clots all in my mouth, the day that I was supposed to check myself in just for this simple surgery. When I went there, he immediately performed a biopsy and informed me that I had gone within 30 days to 70% populated with leukemic cells.

Dr. HARPHAM:

It must have been a terrifying time.

CEHRYL:

Actually, I wasn't frightened at all. I was just glad to know that there was something there and maybe if it was leukemia, there would be a course of treatment, that's how I looked at it.

Dr. HARPHAM:

So. Bad news even though it was bad news was good news because it gave you something you could do.

CHERYL:

Right. I felt like there was finally something that I could focus on and get towards. Again, I was living in Florida, in Orlando, my doctor immediately called Shands in Gainesville, which is a teaching hospital, wanted me to go up there immediately. They went ahead with the procedure to install the catheter, just because -- talked all at once -- everything was gonna be happening then. I went to Shands in Gainesville, all excited because I was gonna be able to use my new catheter for the first time. Met with the nurse and she said they'd need to do blood samples and all that and I said well I have this brand new broviac catheter and she said, Honey, we don't need urine today. And that was about the way my day went. I was told to be there by six in the morning. It's about a 2-hour drive. My mom had flown in from Maryland to go up with me. We finally got to see the doctor there at about 5:30 that night. He basically came in and told me the prognosis was poor. At that point his feeling was that I wouldn't really want to spend the last few weeks of my life in a hospital situation. It was near the holidays, Thanksgiving and my birthday, so he recommended that I just go spend the holidays getting my affairs in order and preparing to die, basically.

Dr. HARPHAM:

How did you do with that dismal prognosis? And what sounds to me like no sense of hope.

CHERYL:

You know, I'm one of these that really felt I'd had a great physician in Florida who's signed me up for visualization techniques, you know I'd dabbled in you know, psychic therapy and different spiritual things, theology and those type of things. I honestly personally didn't feel anything was going to go wrong. I just felt I had dug myself deep in a hole and it was gonna take a while to get out, but..

Dr. HARPHAM:

What were you gonna do about your care? Because it sounds like this doctor did not hold much hope for you.

CHERYL:

Well, the practical side of me was, okay, I will go back home cause most of my family is in the Baltimore/Washington area, so I determined I would just drive up there. I'd already had an oncologist up there who had treated me for some of the Hodgkin's treatments so I was just going to him for a third opinion, because I basically wasn't ready to give up.

Dr. HARPHAM:

And then what happened when you went to George Washington?

CHERYL:

I went back to Maryland and I met with the oncologist that had met with me and he said, You know, I don't know if this is possible or not, but there's somebody I want you to meet, and he made an appointment with a doctor at George Washington Hospital, he said you know, it won't hurt to go over and see what he has to say. So I went over and met with the doctor, who you know, he reminded me a lot of my doctor in Florida, so I was very confident in him, from the get go. And he just basically told me there were a couple of tests he wanted to do and based on that would determine how he would treat me. He just told me that he did agree with the prognosis to a point, but he as well as another doctor said, As far as we know, meaning that they are doctors but you know there are basically forces outside of them that he sees miracles everyday and perhaps I was another one.

Dr. HARPHAM:

Right. It's the idea of uncertainty and that there are many factors that play a role besides just the medicine. Well, this was all fifteen years ago so I kind of know this.

CHERYL:

I was treated at George Washington Hospital. It took awhile for the leukemia, because as you probably know, they wipe out everything and wait for your own leukemic cells to come back. Mine were real stubborn in coming back. It took a little longer than necessary. He did arrange during that time to have my family members tested for this new thing called a bone marrow transplant. I was fortunate that out of seven brothers and sisters, I had three perfect matches, except for blood type, and so I was able to undergo a bone marrow transplant at Johns Hopkins.

Dr. HARPHAM:

And here you are!

CHERYL:

And here I am.

Dr. HARPHAM:

Why don't we open the discussion by talking about the power of words in people's diagnosis, evaluation, treatment and recovery after completion of treatment. Joni?

JONI:

Certainly as a writer I'm big time on the power of words. I think that there's definitely clinical proof that what our belief system is and what we are told does have an effect on our wellbeing and how we're gonna respond to chemotherapy or any other kind of therapy. Otherwise, why would they have studies where a placebo is given and the person isn't told. Why shouldn't that person be told that it's a placebo? Well, because that information affects their outcome. That's been acknowledged even in allopathic medicine for a long time and certainly in the complementary therapies, when you go toward visualization and meditation and feeling techniques, you're putting all your faith in the power of those words that you're speaking to yourself.

Dr. HARHAM:

Joni, can you think of some words or phrases that you found particularly inspiring or comforting? And these can be words from your physicians, your family, from your friends, or words you tell yourself.

JONI:

Well, this is another very simple thing that my sister Janice said to me on the phone the very first day that I was diagnosed. I called her to tell her about it, and just before we hung up I said, "Well, I gotta go. I've got an important phone call to make to the Psychic Friends Network", and she said, "I know you've got a lot on your plate right now, but you can do this. This, you can do." And I repeated that to myself so many times, I can't even begin to count. Also, I have certain prayers that I have used over and over again. I suppose you could call them mantras. One of them is "Great faith, great doubt, great effort". Another one is from the book of Psalms, about the living water in the desert, I also will repeat to myself one of my best mantras, "Grace is real, God is here, and in the end, everything is going to be all right."

Dr. HARPHAM:

Thank you, Joni. Debra, were there any words that you found particularly helpful? Or phrases, or sayings?

DEBRA:

Helpful. To be honest, .... always said, you know, God doesn't give you anything more than you can handle. I personally got sick and tired of hearing those words.

Dr. HARPHAM:

So words can ---- words can cut both ways, they can be helpful but they can be very harmful. What did you do when people would say things that were not helping you?

DEBRA:

Oh, I just let them say what they want. People don't know how to react. For me, basically I just kept surrendering, uh, to God. I didn't know what else to do.

Dr. HARPHAM:

Debra, what about in the practical, day to day interaction with people, with your doctors and nurses, with your friends, or even acquaintances. When you found that people were saying things that were really a burden, were making your journey harder instead of easier. Did you...

DEBRA:

When I went to the Hodgkin's I basically went to my, I flew to New York and I stayed at my sister's house and it happens that my family is not a very close family and not a very supportive family on an emotional level, and I basically did it myself. I know when I went through my radiation treatment I invoked white light, white and purple light surrounding me before my first treatment. I do know that my spirituality, my belief, is what basically got me through both of my cancers. It's given me the strength to keep going.

Dr. HARPHAM:

Faith can be so crucial to so many survivors, so we still live on this planet with other people, and do you have any suggestions or advice? What would you tell caregivers about what to say to someone going through cancer?

CHERYL:

I have a comment on that one. My doctor told me early on, "You are not a statistic". And that meant so much to me, when, especially dealing with teaching hospitals, when the first thing out of some of the students' mouths was "What's your statistical chances of everything are?" And this would be sometimes hard to block out and I just got to the point where I would tell them, "I'm not a statistic. So just tell me what you need to tell me but I don't need to know that."

Dr. HARPHAM:

But it was a very easy and effective way to cut out some of that negative energy from people's comments. Were there any other comments that you found, or statements or words that you found particularly harmful?

JONI:

I think that the most harmful ones are probably the most well-meaning ones. I mean I have to laugh when Debra says, "God never gives you more than you can bear". I must have gotten 5000 copies of the poem about you know, "the two sets of footprints in the sand" where there's only one set, that's where God carried you." And then that big dent in the sand is where God dropped me on my head, apparently! But my, all-time favorite from the Big Book of Banality, is the "that which does not kill us, makes us stronger". (all talk at once) My answer to that is "yes, and that which does not kill a seat cushion makes it a flotation device". I think, that's my way of diffusing those types of remarks was just to joke about them.

Dr. HARPHAM:

Well, actually, Joni, you said two things. One is that you knew that it was well-intended. And when we use our rational minds and say, well this is definitely not helping me but I know it's not meant in a bad way, they're saying it because they don't know what to day.

JONI:

Absolutely.

Dr. HARPHAM:

How did you use humor, Joni?

JONI:

Well, in trying to set people at ease. When I finally came to the realization that as sometimes hurtful and definitely annoying as those types of comments were, I finally realized that I didn't understand the journey that these people were going on any more than they understood my journey, and comments that were made out of love, you know, look at the love and not at the comments. But, humor is just my coping mechanism. I think it's 50% denial and 50% just my temperament. I sort of went into auto pilot when I was diagnosed and I've been a performer all my life. I started on stage when I was three years old, I always knew what was expected of me, and that's what I did throughout my treatment.

Dr. HARPHAM:

The humor was familiar and comfortable and it connected you with the old you before cancer.

JONI:

Yes.

Dr. HARPAM:

Interestingly, you said, you call it denial but maybe a better word would be "distancing". It gives you a little bit of distancing, which, in uncomfortable situations, can be helpful.

JONI:

Absolutely. Because I'm not sure how I would have gotten through it had I really looked at the situation, and it wasn't until I was in remission that I, oddly enough, I became horrendously depressed, when I was solidly in remission. Because, then I think, I paused long enough to look back and suddenly recognize what had really happened to me. How truly terrified I had been, how much pain I had caused my family, or how much the situation had caused them, I hadn't. But you know the fact that they loved me had brought them into this terribly painful scenario.

Dr. HARPHAM:

Well, we're gonna talk about recovery after completion of treatment and some of the problems that can actually first occur after treatment. But going back to the humor, I wanted, Cheryl, I was hoping that you would share with us how, even in the most horrific or sad situation, of you know, getting a terminal diagnosis, some funny situations can come up.

CHERYL:

Well, probably the funniest thing is, my mother to this day cannot believe she did this, but as I explained earlier, I had gone to Shands, where I was basically told, I agree with the prognosis, you know, I'd say that you have about three weeks, at best, you know, go home, I understand you're a football fan, root for your Redskins, and just get your affairs in order. And I just was like, "Okay", and that's the way I left it, because I thought, I'm not going anywhere here. Went to the pay phones to you know call my significant other at the time, and you know, my father, I'm a daddy's girl, and I just told them, you know, according to the doctor, it's not good, but Mom and I have been talking and I've talked with Bill and we're just dogging ahead up there for the holidays and we'll see what else is available. My mother got on the phone and as I said earlier, I have seven brothers and sisters, I'm one of eight, I'm number four, and I've seen her through all kinds of things, but just seeing her stand at the payphones and just wilt, down to the floor, all the doctors and nurses come running over you know to try to revive her. And that night, 5:30, it was in November, so daylights savings time, it's pouring down rain in Florida, I drove from (Dr. interjects; "And who's the patient here?") I drove from the hospital to Georgia. We spent the night, I was craving pancakes, so I went to the waffle house for my pecan pancakes, and the next morning my mother was driving me a little bit crazy, said, "I'll drive the rest of the way". So I ended up driving all the way back to Maryland. And that was kind of it was stress relief on some level but it was also just trying to understand where she was coming from. And she didn't really appreciate my sense of humor a lot growing up, and she really didn't that day either, so I was just expressing how wonderful it would be to be bald again and not have to shave my legs and anticipating other treatments and things that I thought were coming up.

Dr. HARPHAM:

And a no hair day is better than a bad hair day.

CHERYL:

So it was those type of things and you know I've always been kind of, humor hides a lot of things. But in mine I always just had this feeling that I would be okay, and just try to help them through that. I know it was mentioned earlier I was fortunate, I have a very supportive family. But I would rather have gone through it from my end than try to understand what they were going through on their end. And that's what I always explained to my mother. It was harder for me to see her wilt on the hospital floor, and have to be revived, than it was to get a diagnosis you know prognosis that I had three weeks to live.

Dr. HARPHAM

All three of you have mentioned the effects of your diagnosis on your family. As well as your need to be with family or the help you derive from being close to family during diagnosis, treatment and recovery, Joni, can you tell us a little bit about how family played into your treatment and recovery?

JONI:

I think that I would not even have embarked on chemotherapy if it hadn't been for the fact that I had two small children at the time, and when I did get to one point where I wanted to quit, I couldn't, because my daughter was in kindergarten, my son was in second grade. I have this wonderful man that I'm crazy about, and really it was my immediate family, my husband and kids, that absolutely anchored me to this planet, where it would have been easier to leave it. And of course, my mom came down and helped take care of me and took care of the kids and took care of Terry and helped us all out, and you know, I so much agree with Cheryl, my mom said to me once I shouldn't crying, here you are in the middle of your worst nightmare. And I said, Mom, I'm not in the middle of MY worst nightmare, I'm in the middle of YOUR worst nightmare. This is much harder for you than it is for me. But my sisters did a very cool thing. My sisters were living in San Jose, Helena, Montana, and Australia, and I was in Houston, so we're all very far away. But my sister, Linda, who lives in Montana, encouraged me to envision the "Cone of Power" is what we called it. We were all just focusing our prayers toward one central point, and that this huge cone was coming up from these four corners of the earth, with the center of light being God, and me being absolutely sheltered by this sort of karmic umbrella.

Dr. HARPHAM:

That's a very powerful image.

JONI:

Absolutely. There were many days when I sat in the chemo recliner just envisioning that cone of power.

Dr. HARPHAM:

So your family gave you something you could hold onto, even when you weren't with them.

JONI:

Absolutely.

Dr. HARPHAM:

Now, Debra. I understand you're single. How does family, you mentioned going home to family when you needed treatment. How did family play into your treatment and recovery?

DEBRA:

Well my sister Susan and her husband, or ex-husband now, opened her house to me and my two kitties, which I flew over from California. And I stayed at her house for about two months while I was going through treatment and surgery. It was very gracious of her. We weren't close growing up, you know, two years apart, and there was a lot of sibling rivalry.

Dr. HARPHAM:

Did the cancer change that in any way?

DEBRA:

We got closer after that, yes. And my other sister, Linda is or was a hospital administrator, and when I decided I was gonna fly to New York to get treatment because there was no one to help me out in California, so my sisters went on their own search to find the right doctors for me and it was really funny that they both ended up with the same oncologist, in their own ways. My oldest sister is the one that got me the appointment cause the oncologist that they got me was the head of oncology at Long Island Jewish and he was basically helping patients with leukemia, not Hodgkin's and he wasn't taking any new patients. But as a hospital administrator, my sister knew how to get me in.

Dr. HARPHAM:

Now your sister not only helped with a place to be but she advocated for you when you were vulnerable and you didn't have quite the energy.

DEBRA:

Yes she did, and I knew nobody because I hadn't lived in New York in eight years, and then also I had a CT scan done at her hospital where she worked and was able to take the results with me that same day. Didn't have to wait days for the results. So I brought it all with me to the oncologist. And I had my pathology report from California, they gave it to me, the doctor in California gave me everything I needed, and the oncologist just went, "Whoa, you

Just got everything in hand, no waiting months for you."

DEBRA:

I wanted to tell a funny story that happened to me, if I may. During the course of my radiation treatment, I was lying there naked, in the radiation room and I was in the middle of my session, probably halfway through, and they place you in a position where you can't move, and so one day I'm laying in this position and I decided I wasn't ready for the radiation and I just dropped off the table, saying, "I'm not ready, I'm not ready", and I jumped off the table, it's like five feet off the floor and I jumped out of view of the cameras and said, "I'm not ready I'm not ready, don't shoot, don't shoot." And all the technicians came running in looking for me, and said, "Where'd she go"?

Dr. HARPHAM:

Oh, how funny. And there you were, in the buff, in this room..

DEBRA:

Completely nude. And I was just freaked out. I was just at a point I couldn't handle it. I just had to stop for a little bit.

CHERYL:

I used to wonder because you'd get on that table and they'd put you in the blocks and then you'd hear the doors slamming and all that, and you --- "am I crazy?" they're out there, I'm in here, what's wrong with this.

Dr. HARPHAM:

Cheryl, I'd actually appreciate your telling a little bit about how family played into your treatment through recovery and I know that family is an important issue to you because the treatment resulted in infertility. So, the issue of children has been a major part of your recovery from treatment. Can you share a little bit about family>

CHERYL:

Well, as I , I come from a large family. For quite a few years, leading up to this time, I have an older brother and I that didn't get along, I have my oldest brother had gone to Vietnam and had stayed over, had married a girl and stayed in the Phillipines so he was not a part of my life for quite a while. As I said, I'm number four of eight. We run from fifty-five to thirty, so there's a 25-year span amongst us. When I was diagnosed, it brought everybody *-together. Which was one of the miraculous things for me, particularly my older brother, who was when it came time for the transplant was one of the ones who was a match for me. I was fortunate because when I was having treatment for the Hodgkin's disease, I was in the room with a gentleman who had lymphoma, and this was in the early eighties and I know it still goes on to this day, he had been pretty much abandoned by his family, who thought it was contagious and those types of things, and I really felt for him because through family and friends, I didn't have any of that and I don't know if it just wasn't present or if it was I just kind of avoided it because I tried to keep as positive as possible. My sister, who ended up being my bone marrow donor, and I, were always extremely close, to the point that she's the one I didn't feel I had to protect. You know, if she would call and say how are you feeling, everybody else I'd say, "Oh, I'm fine", you know, trying to protect them and make things easier on them, and she'd say, "Now I know you're not feeling fine. You probably have tubes in your nose, up your arms, and those type of things, which was true, and she was one who would convince me to talk to my body parts. But you know, all of my family all over the country they came all together at Thanksgiving, even that they thought it might be my last. But transplant day, everybody flew in and we had like a party before, you know. The hard part of that was understanding that it was my sister that was going into surgery, I just had to kind of lay there. We celebrated each and every little aspect of it, no matter how good or bad, because I tried to keep as positive as possible and so did they.

Dr. HARPHAM:

Meeting each like milestone you got through...

CHERYL:

Yeah, each milestone. I have a sister that's a hairdresser. When I first was told I was having chemotherapy, I was given about twenty minutes to prepare. I have one sister who's like the beauty queen, that just sobbed, because the thought of losing hair was just too much for her. My other one showed up with a bagful of different wigs and hairpieces and I'm talking everything from the Little Annie red thing to you know the real long Elvira type things. Oh, let's see what we could do with makeup. I mean, I don't wear makeup to this day, but it was like, "we'll do a total makeover, people won't know what you are." When I did lose the hair I had come out to visit my brother in law and sister in California and I'd gone to LA and it was big at that point with the Hari Krishnas and some of the punk styles, so it was like, "Let's go clubbing and you'll fit right in." Those type of things. So just different milestones. When my blood count started coming back it was champagne and they were having parties and ...

Dr. HARPHAM:

So you not only go strength from family but it gave you a very important place to celebrate the milestones and making it real.

Dr. HARPHAM:

Let's skip forward a little bit, and tell us when the issue of infertility came to the surface and what it meant and how you dealt with it.

CHERYL:

That was almost immediate, because during, I have been pregnant before, I was pregnant early on and it was one of the things that first they had told me was stress-related because I had found out I was pregnant, was already going for my prenatal checkups and they said, things don't look right, and then I miscarried. That's a whole nother set of issues cause you get people, "Oh, God works in mysterious ways" and there'll always be other chances and it was like okay. Okay. And then when I was diagnosed, as part of the Hodgkin's disease treatment they told me they were going to do this laparotomy and because I wanted children they'd go in and protect your ovaries by doing all this wonderful things, and coming from a big family, I always expected that I'd have children, you know, I had names picked out and those type of things, so it was really hard. And I never realized how hard until my younger sister became pregnant..

Dr. HARPHAM:

And that was after your lymphoma treatment was completed.?

Dr. HARPHAM:

That was during.

Dr. HARPHAM:

Now at that time didn't you still think you might have fertility? Because it sounds like they took measures to protect your fertility. So

CHERYL:

They wanted to, but I never had the surgery to have that done. They couldn't do the laparotomy and they had started ...

Dr. HARPHAM:

So you knew when you underwent treatment that you were probably sacrificing your fertility?

CHERYL:

Yes.

Dr. HAPRHAM:

And how did that feel? You were also fighting for your life.

CHERYL:

It was really difficult because I had tried to put it off for a little bit and it was, well, we'll adopt. It was the same thing, "well there's always unwanted children in the world" all those wonderful things that you don't want to hear at the time. It was just really hard. But I just had the realization that well, you know, adoption IS a feasible type thing and then I looked into adoption and of course I was considered high risk so in the state that I was in so, that's probably been the most difficult challenge of all of it.

Dr. HARPHAM:

Well, what were some of the things that you thought or felt when you realized that you would probably never carry a child yourself and too, that it was unlikely that you would ever get to adopt. Was it just sadness or anger, or what sort of feelings did you have and how did you find a place for those feelings? How did you ever resolve those feelings and move on?

CHERYL:

Well, in some cases I haven't resolved them. It's like one of these things that every once in a while comes up and rears its ugly head if you will. I'm fortunate that I have 18 nieces and nephews, I raised two of them for about three years when they were little, and that helped, but you know there's that kind of emptiness. As I said earlier, it's probably one of the most difficult things. But a lot of it I just came back to this isn't the path that I'm supposed to take. I'm one of these people I have to look every day at, "What am I learning from this?"

 And I think a lot of my anger comes in when you pick up the paper and you read about people that have unwanted children or they abuse their children and those type of things, and it's like, "why me?" You know, I would take wonderful care of this person or this child, and those type of things. But I think it's something I haven't totally resolved. At the time as I said, I thought about not having the treatment and you know just had really loving people around me that were like, "well you know, the whole thing with adoption".

Dr. HARPHAM:

And it also affects how you feel about yourself, because something like this could really work many different ways. Some people feel incomplete or like damaged goods, whereas, other people realize that their family loves them so much they want them at any cost, even if it means.. So how, did it change how you feel about yourself? And then I'm also gonna ask you do you have any words of advice or suggestions for other people who are either facing treatment that might lead to infertility or subfertility or who have become infertile because of their treatment.

CHERYL:

How I feel about myself? It hasn't changed. I've always liked myself, which I think you know is part of the way, you can't really love other people until you love yourself, and I've always felt safe, and a complete person. I always looked at husbands, family, my own children, as just things complementing my life and adding to it that way. Not having them.

Dr. HARPHAM:

That's a very powerful statement, Cheryl.

CHERYL:

Not having my own, as I say, having eighteen nieces and nephews that I play a very strong role in their life, I'm you know, flying back and forth, because I don't have children, you know, I make sure that I'm there for their big occasions and those type of things as much as possible.

Dr. HARPHAM:

So, channeling some of that love.

CHERYL:

Yeah. I also work with like Children's Hospital, I worked with because I thought there's other avenues where you can help unwanted children and those types of things. There's Polenski's Childrens Home out here where I did some volunteer work in San Diego before I came out here, those types of things. When it comes to relationships, as I said when I was in Florida I was in a different relationship that ended in part because of the child factor, just because I got really frustrated. My hopes were set pretty high went in for adoption and then you're considered a high risk and you say well what does that mean? How can anybody guarantee that they'll be here from one day to the next. I think my advice to anybody is just infertile because of an illness or any other reason, just look at them as a way to complement your life and try to find another way to have children in your life, if that's truly what you want to do. I mean to me it's not the be-all and end-all of who I am.

Dr. HARPHAM:

So it's accepting where you are and then figuring out how can you live a full life given the current circumstances? I think you're gonna help an awful lot of people.

Dr. HARPHAM:

I see our time is running out, so what I'd like to do is go to each of the guests and have some closing type statements. Joni, I know you have a book coming out, "Bald in the Land of Big Hair" and it's due out in I guess February of 2001? Tell us a little bit about the book and the messages you want to share in this book, that you think would be useful for people dealing with cancer.

JONI:

Well, I think I want to share something that I hope will be useful for people dealing with cancer and people who are just dealing with life. I think if I had to sum up the message of the book, it's that in the rose garden of life, cancer is just another compost heap. It's rotten, but it makes great fertilizer! Things happen in peoples' lives. They go through refining fires and they come out on the other side. One way or the other, all things come to their healing. Sometimes healing comes in the form of death. And sometimes healing comes in the form of growth. Sometimes it comes in the form of just a peaceful continuation. But the whole object of the game of life is to be happy. It's imperative that we keep our joy and that we not let cancer take it away from us, because even if you live fifty years after your diagnosis, if cancer sucks the joy from your life, you haven't survived it.

Dr. HARPHAM:

So triumph over cancer is measured by how you live, not how long.

JONI:

Absolutely. And I think it's measured by what it is that you give while you're here. Not so much what you do but what you're able to give.

Dr. HARPHAM:

Can you give us a closing statement on how active a role you feel the patient should play in the diagnosis, treatment and recovery?

JONI:

Well, I think absolutely the most active role that can be played, because everyone from priests to pathologists, the oncologists, all the "ologists" that there are, those people are all ground control. You are Major Tom, you're Houston, you're the astronaut, who's out there, and all these people are paid consultants who give you advice. I don't believe there's any such thing as "doctor's orders". I think I'm the CEO of my own body.

Dr HAPRHAM:

So, even though the first time you were diagnosed it was kind of your husband who really into the diagnosis. Sounds like it would be different if it happened today.

JONI:

Absolutely because one of the biggest things I learned from this experience was to be more honest with myself and trust more in my own intuition. If I'd been listening to myself, I think I would have heard the same warning bells that my husband heard. Thank God.

Dr. HARPHAM:

Great message! Trust yourself and use all the people around you to get taken care of.

JONI:

Absolutely.

Dr. HARPHAM:

Debra, what about you? Any closing thoughts about using your cancer experience in your life?

DEBRA:

Well, it was a reminder for me. I always wanted to be the best person I can be, and I am working on that. And when after the breast cancer it was my second reminder. The first time I just wanted to change my life and be happy, do what I wanted to do for myself, and pursue my dreams. And when I had the breast cancer it was, "things aren't working in my life, still" and I've just gotta be the best person that I can be.

Dr. HARPHAM:

So it's a real wakeup call.

DEBRA:

It was. And I have, I'm in the middle of a new career. And talking about children, I work with the elderly, and it's just the opposite. And it's just so wonderful. And I find a little love and a lot of support and I give love and I give support. And it's such a wonderful experience. And you've just got to follow what's in your heart. I had a doctor that I did not like and I found another doctor that I did like, whose energy worked better with mine. And you've just got to follow what's in your heart.

Dr. HAPRHAM:

So, find healthcare team and support people with whom you can be a team, you can be an alliance and work together.

DEBRA:

You have to be proactive. My surgeon was always there for me. Any time I needed to talk, you know, without an appointment, I could come in an talk to him. He was great.

Dr. HARPHAM:

And the confidence that he would be there and that trust, was the key. What about Cheryl? Any closing thoughts?

CHERYL:

Well, I've got kind of a saying that I try to live by which is "I dwell in possibility". And you know I just feel, when people were telling me that everything was impossible, I made it possible. And I think that everybody needs to look at their life that way, as there's possibilities behind every corner, and it may not be what you think is going to be there. You know, references made earlier to cancer being like compost, one of my other favorites is "You bloom where you're planted." Take whatever you can from it. When I was going in for the bone marrow transplant, I knew that the statistics said that I didn't really have much of a chance for survival there, but I also looked at it like maybe that's just it, maybe I'm NOT supposed to come out of this, and I was just looking at it like, this thing's going to be resolved one way or another, and with every situation that approached, it was, "well, what am I learning from this?" because I believe there's a lesson. And you have to really look at it sometimes to try to figure it out. And sometimes you just have to kind of make it up. You know,...

Dr. HARPHAM:

Life is a school.

CHERYL:

Life is a school. And this morning I learned that I can get up and make it through a day, when I really could have cared less whether I made it or not, but I did make it through, and you know, every morning I still wake up and just thank God for giving me another day. It may be gray, it may be rainy, it may be anything, but it's like, well, I'll just pick the path that I want to take today and take it. Every day is a gift.

DEBRA:

I have one other thing I like to say that I'm a walking miracle. I remind myself after surviving the two cancers that I've survived, and I think we all are. We're walking miracles.

Dr. HAPRHAM:

And the message is that there is always hope. And I hope the discussion with these wonderful women has helped you with some of the issues that you may be facing in your own life. A big thank you to Cheryl, and Debra and Joni, for the willingness to share their stories with us today. I hope that some of their experiences and insights will help you to think about and talk about your own concerns in healing ways. I encourage you to listen to the other discussion that we have available on the website or by phone. For the American Cancer Society's Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.