Lymphoma/Leukemia, Female, Under 35, In Recurrence

Recorded January 15, 2002

Rachel	Lisa username: lisas Lisa's Web page	Charlotte

Welcome and Participant Introductions

Dr. Harpham:
Hello and welcome to the American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today I will be talking with three women who are survivors of Hodgkin's lymphoma, all in their mid-30's or younger, and who have experienced either a second cancer or a recurrence of their Hodgkin's lymphoma. As a lymphoma survivor myself, I'm pleased to be your host for today's conversation as we talk about the value of having supportive caregivers during the treatment and recovery processes; staying informed about your treatment; communicating effectively with your medical team; making decisions about preserving fertility or having a family; dealing with the spiritual and emotional sides of having cancer; dealing with the fears of your cancer recurring; [and] finding a sense of normal after being treated for cancer a second time.

Our first guest is Lisa from California. In 1992, when Lisa was pregnant with her son, she noticed a mass on the left side of her thyroid. Six weeks after the birth, a series of tests were completed, and on Lisa's insistence, a test was done to see if the mass was cancer. The test confirmed that it was thyroid cancer. Lisa had surgery followed by radioactive iodine. She did well until 1999, when Lisa noticed an enlarged lymph node on her neck. She was then diagnosed with Hodgkin's lymphoma in the chest and neck. She was treated with chemotherapy and radiation and has been fine since the treatment. Lisa is single, she is 37, and her son is now 9 years old. Welcome to the program, Lisa.

Lisa:
Hi. Glad to be here.

Dr. Harpham:
Our next guest is Charlotte, who is also from California. In September 1997, Charlotte was experiencing neck and back pain and abdominal cramping and swelling at night. Her doctor at the time did little in the way of testing or treatment. Under the care of a new doctor, Charlotte was given an ultrasound and then a CT scan. The results suggested cancer. A biopsy was performed two weeks later, and the diagnosis of Hodgkin's lymphoma was confirmed. Charlotte was treated over the course of seven months, first with chemotherapy, then with radiation therapy, and she achieved remission. Two and a half years later, in November 2000, her doctors evaluated a new lump on her neck and her difficulty swallowing. She was diagnosed with a recurrence of her Hodgkin's lymphoma. Treatment involved six months of chemotherapy followed by a stem cell transplant. Before starting the chemotherapy, she received fertility shots and had a few of her eggs harvested and embryos established. Charlotte recently completed all of her treatment. She is married and has two dogs. [laughter] Welcome, Charlotte.

Charlotte:
Hi.

Dr. Harpham:
Our third guest is Rachel. Rachel was first diagnosed with Hodgkin's lymphoma in 1999 and had a recurrence in the spring of 2001. Before the first diagnosis she had been sick for a year and a half, suffering from weight loss, fatigue and a nagging cough. Her doctor didn't seem concerned, so she switched doctors and was soon hospitalized. Tests confirmed that she had Hodgkin's lymphoma. She was treated with six months of chemotherapy. After returning to work, some months later Rachel was noted to have enlarged lymph nodes at one of her check-ups and was diagnosed with a recurrence of the lymphoma. Rachel underwent fertility treatment and had some eggs and embryos established, followed by intensive chemotherapy and then a stem cell transplant. Rachel's lymphoma is in remission. Rachel is single and lives in California. Welcome to the program, Rachel.

Rachel:
Thank you.

Finding Support from your Medical Team

Dr. Harpham:
Well, all three of our guests have been through difficult treatments. Let's talk about the role and the value of supportive caregivers during treatment. Lisa, how did your physicians and nurses support you, in addition to giving you the proper anti-cancer medicine?

Lisa:
I think there was a lot of information that I requested that they happily provided, and I had done a lot of research on my own before I even went in for treatment. So they were quite surprised and pleased because I had questions that indicated that I knew kind of what was going to happen next. There was a lot of--as much laughter as there could be during chemotherapy sessions because I was told by the nursing staff that laughter was one of the best healers. That no matter how hard it was, I should always try to find something funny in what was going on. You know, find the little joys in life.

Dr. Harpham:
So you could joke around with them?

Lisa:
Yes. Yes. I used to make really horrible jokes about my wig and throwing my wig at my ex-husband, and things like that. So it was real helpful to be able, especially when things were so hard, to be able to laugh about something, whether it was a joke or whatever.

Dr. Harpham:
Were there any other ways your doctors and nurses supported you?

Lisa:
They were all very caring, which surprised me, because I know that medical professionals kind of sometimes tend to be a little bit removed. They have to deal with sick people all the time, but they were very caring.

Dr. Harpham:
How did they communicate that to you, Lisa?

Lisa:
Whether it was just checking to see how I was doing. If I was in the hospital having a blood transfusion, my doctor would come in and make sure that I had my dinner served to me and would get frustrated if it hadn't happened. It was just kind of their demeanor. I was treated by mostly ladies, whether it was my nurses or my doctor. So it was just--you could just sense that whether it was body language or things that they said, or smiles or whatever, pats on the back; just little things like that.

Dr. Harpham:
What role do you think you played in getting support from your health care team?

Lisa:
I asked a lot of questions. I had a lot of questions. I wanted a lot of information, because I had found with my first go around with cancer that I didn't. It hit me so hard I didn't ask those questions. I think doing the research ahead of time, for myself, made it easier for me to ask questions. I also had someone with me at my appointments to be kind of second eyes and ears, to maybe think of questions that I didn't think of.

Dr. Harpham:
Was there anything you wish your physicians and nurses had done better?

Lisa:
I think I would have liked to know, for me personally, everything that was coming, whether it was a test or a medication. Sometimes they hit me with things between the eyes, and I felt bombarded.

Dr. Harpham:
Can you give an example?

Lisa:
Going into chemotherapy and not knowing that there was a possibility that I would have to have injections to increase my white blood cell counts and my red blood cell counts. Knowing that I would have to continually have CT scans and different scans to check how things were going.

Dr. Harpham:
Now did you tell them that you prefer knowing everything ahead of time?

Lisa:
I communicated that when I started treatment, but I think it must be very difficult to give that to some people. Some people don't want it, some people do. And I think they gave as much as they could, as much information as they could at the time.

Dr. Harpham:
Charlotte?

Charlotte:
Yes?

Dr. Harpham:
How did your physicians and nurses support you through treatment?

Charlotte:
One of the best things they did was to make sure that they took the time to answer all of my questions. I always had a list of questions [laughs], and I would pull out my paper and they would go, "Oh, my gosh!" So they were really good about that.

Dr. Harpham:
Was it an "Oh, my gosh" a good thing or an "Oh, my gosh"--oh, no?

Charlotte:
Yeah, they were teasing me.

Dr. Harpham:
Okay.

Charlotte:
They would tease me. So, they were like, "Here she goes again with her questions!" So, but they answered them all.

Dr. Harpham:
Okay. And it sounds like they welcomed your questions.

Charlotte:
Yeah. They did.

Dr. Harpham:
So that was a form of support?

Charlotte:
They did. For the most part they did, and I think that they were respectful when I would draw boundaries. For instance, I would say, "I don't want to do that" or "I'm not sure" or "Why would I want to do that?" or "What could I do instead?" And instead of just trying to railroad me and have me do what they wanted me to do, or thought I should do, they would give me my options. And that was huge, especially with my second-- my re-diagnosis to find out what is the science behind it. For example, if it was back in my bone marrow then I didn't have a choice but to do the stem cell transplant, really. If I was going to go with conventional therapy, then I had to do the stem cell and not the chemotherapy.

Dr. Harpham:
So it allowed you to regain a sense of control?

Charlotte:
Yeah! Definitely! And it let me know, not only control, but where I was headed and what the road ahead of me was going to kind of look like. So, if I couldn't control my body, at least I could know where I was going and be prepared for what was coming.

Dr. Harpham:
Was there anything that you wished they had done better?

Charlotte:
Well, I had different experiences. The first time I was in a very small doctor's office, and the second time I was in a very large oncological group. So I guess, I wish--I don't know. I don't think there's anything. The second time around I think that you kind of--once you get into the system and your treatment gets going, you sort of are in the system. Whereas when you're with a smaller doctor, you have the opportunity to become part of a family, and you see the doctor more often, and if you have questions or problems it's right there. Whereas if you have a group of doctors, you kind of get in with the nurses, and they administer the chemo and you're just kind of going--you're on track.

Dr. Harpham:
Right.

Charlotte:
And so, that to me made me a little nervous. At one point, I got pneumonia, and I kept saying that I was coughing to the point where I would start to throw up. And they kept listening to my lungs, but in a room with a bunch of other people getting chemotherapy, and they're like, "Oh, you probably have bronchitis." Well, it turned out that I had pneumonia.

Dr. Harpham:
Uh-huh.

Charlotte:
I felt like if I was with my doctor that I had before he would have caught it, because he wouldn't have--

Dr. Harpham:
What could you have done differently?

Charlotte:
Oh gosh. What could I have done differently? A lot of things. I think relax for one, because I did so much research, that I knew that it's more of a practice than a science and that made me nervous. But we also made jokes. I have a dog named Chemo that we got the first time.

Dr. Harpham:
Oh my goodness!! [laughs]

Charlotte:
So, I guess I could have trusted a little more, I think. I learned the second time to surrender, that I needed to surrender it. That I'm not going to be able to control it, or reason it, or educate my way out of it. I need to just go with it, which I had an easier time doing the first time.

Dr. Harpham:
Well, you're actually talking about something very difficult, because a few minutes ago you talked about drawing boundaries and being involved in the decision making--

Charlotte:
Right.

Dr. Harpham:
--which represents taking control.

Charlotte:
Right.

Dr. Harpham:
And just now you talked about letting go of control.

Charlotte:
It's a balance.

Dr. Harpham:
So, how do you find a healthy balance?

Charlotte:
Well, it's a struggle. When I was in the hospital doing my transplant, as Rachel knows, we talked about this; you need to surrender to the process. So that they can heal you in the way that you've chosen; which is conventional medicine or alternative, whatever you decide. But if you surrender too much, then you don't survive it. So you have to stay up on it and aware and it's a struggle. It really is a struggle, and each person has to find their own way of getting through it and then dealing with the fall-out after treatment.

But I don't know how to find a balance. I meditated, I prayed, I talked to my friends, I wrote in my journal. I have a counselor; I talked to her. My husband; I vented and talked to him. And pets are the greatest therapy ever! They are the best, because they never question you. So that was good, too. When I was up in the middle of the night, they would get up and just sit there. I didn't have to explain myself. They didn't feel bad. They were just like, "Okay! We're throwing up. Cool!" And they would just sit in the bathroom, and so that was helpful, too. I mean, it's really a struggle.

Dr. Harpham:
Rachel, let's move to you. How did your physicians and nurses support you through your treatment?

Rachel:
Well, like Charlotte, I started off first time around; I was at a small doctor. He never really answered my questions, he was just one doctor alone in his own practice, and trying to get answers out of him was just like pulling teeth. Finally, when I relapsed and was referred to a specialist physician in Los Angeles, I had to go see him, and he was really impressive with his knowledge. He answered all of my questions and I totally felt like when I saw him that I was the center of his attention. He was very patient, and he didn't look at me with this, like, rolling his eyes with all the questions I had. He answered everything! And his staff was very informative, and they were from the very start.

The very first time you even see them, they give you this binder full of information and they answer all the questions that you have. And another important thing about my doctor was that he was very easily accessible, as opposed to some other physicians. So we were on an email basis. If I had any kind of a question during the day, I would email him and ask him a question. He would get back to me within a couple of hours, or as soon as he possibly could, and he never seemed impatient about it. His entire staff up there in L.A. is just a well-oiled machine. So I never felt like I couldn't get answers, and they were all really, really helpful.

Dr. Harpham:
It's interesting that all three of you talk about the value of sound medical information and access as an important support from your medical team. Going through treatment can have its emotional ups and downs, too. Did the physicians and nurses play any role in supporting your emotional state? Lisa?

Lisa:
Yeah, I think so. Like I said, the nurses really communicated to me how important it was to laugh. They made sure that right from the beginning; they introduced me to another patient who was finishing up her treatment. And what that did was encourage me, because I saw how well she was doing, and I thought, "Okay, I can do this," right at the beginning of my treatment. And I was able to talk with her and find out how her experience was, and we even laughed. She is a single parent, and she told me a story about she was driving her daughter to school, and she had the window down and her hair--she was right in the middle of chemo--and her hair started kind of like, blowing out the window.

Dr. Harpham:
[laughs]

Lisa:
She was losing it! And it was just a funny moment between her and her daughter, and it made me feel better. So they were real supportive in that way; in allowing me access to another patient. They would come in and administer the chemo, and ask how I was, ask how my son was. They would chat with my mom, who came with me to every single appointment. Even when my dad came one time, they got him a magazine that he might want to read instead of the girlie stuff that was in the office.

Dr. Harpham:
[laughs]

Lisa:
You know, things like that.

Dr. Harpham:
Yeah.

Lisa:
So they did make us feel comfortable. Where I went to have treatment, each patient had their own room for chemo, and they would put on TV if you wanted. You could watch a movie if you wanted, things like that. So the atmosphere was a little less clinical and a little more homey, as much as they could make it.

Accepting Help from Loved Ones can be Empowering

Dr. Harpham:
Well, you mentioned the benefit of talking to a non-medical person; another patient. Clearly non-medical people are also important caregivers for patients during treatment; family members, friends, neighbors, and so on. Charlotte, who helped you?

Charlotte:
Well, like I said, I did have a counselor, and then my husband and my parents. My husband was working and going to school the second time, so my parents took me to each of the appointments. And we only had one car at the time, too, so they would drive me and take me home. And my students actually--I teach high school--and they were so amazing, sending me letters and making me posters and cards. I still have a real close relationship with them. They sent pictures and they sent me samples of their homework and class work assignments, and that was really nice, too.

But other cancer patients, you really can't get through the experience without them, because they tell you all the tricks. Like what to do if you have an allergic reaction with the Benadryl® and the Tylenol®. If you get sores--if you're drinking Ensure, if you mix it with ice cream and/or Hershey's syrup, it helps. And so all those kind of things are just so invaluable. So, it was like--Rachel, she was my guide through this whole thing. She was about two months ahead of me in treatment and so she just was just amazing. I was freaked out through the stem cell. In fact, I was thinking wasn't going to do it, and then, our doctor at Cedars; he hooked us up the night that I met him. He was just amazing, too. We still commiserate.

Dr. Harpham:
Rachel, how did the non-medical people support you? Again, family members, friends, neighbors?

Rachel:
Gosh! I had a lot of friends who were there for me for times when I really needed it. But for me, I'm kind of this person that I struggle to hold on to my independence and do as much for myself as I possibly can. But there were times that I had to--I had to just realize, "Okay, I need help. I have to accept this help from these people. They want to help me."

There were times when my mother would come down, and she would stay with me in the hospital, and she would just be there and help me reach things that were out of reach. And then she would come home with me after I had my first really horrible chemo, high-dose chemo, and I just really could not have done it without her. I fainted in the shower four times one day, when I first came home, and I would have been in serious trouble, had I not had my parents there. So they were just so helpful, helping me clean. And a friend of mine sent a cleaning lady to my house when I was too weak to do it myself, or when I was immuno-suppressed and I needed things to be clean, he did that favor for me.

Dr. Harpham:
Was there anything hard about being supported? You mentioned that you really like being independent.

Rachel:
I do like being independent and I guess I feel, or I felt, a bit like an invalid. I hated the fact that I wasn't in control of certain things and I wasn't able to do certain things. And so when you're in that position, you struggle for every last bit of control that you can get and it was very difficult for me to realize that I did need help with things like that.

Dr. Harpham:
And a number of patients say afterward that accepting help is a form of control. Meaning, if it increases the chance of a good outcome, if it makes the treatment safer or easier, then accepting help is actually a form of regaining control. You know, if you don't fall in the shower and crack you head because you have accepted help taking that shower, then even though you have gotten help, you have regained control by preventing a dangerous fall.

Rachel:
Hmm. Interesting. Yeah.

Charlotte:
This is Char, and I totally agree with that, too. Just letting people doing things for you, the act of actually letting them do it, is empowering. It's hard at first, but then when just taking a shower becomes difficult and you're either sitting at the bottom of the shower trying not to pass out or getting out and going directly to bed to lie down so you can regain your strength to brush your teeth. I mean, letting someone come in and help you or to put toothpaste on your toothbrush for you, or whatever, learning to let go of that too, or surrendering to that is empowering because you're making the choice to do it.

Dr. Harpham:
How do you think it changed your relationship with the people who helped you? Lisa?

Lisa:
I hadn't thought of it as being a form of control. That's really interesting. I looked at it from the point of view that the people around me that I knew loved me, like my parents and my real good friends; I knew that they needed to help me in order to be able to cope with their feelings that they were having over me being ill. The first time I had cancer I was married and my son was just an infant. The second time, I was a single parent and I really needed the help. But I knew, like for my parents--my mom and dad were my biggest caregivers--that they needed to be able to do something for me. Because I think they feel so helpless in the situation that if they could do something for me-- whether it would be clean my house, do my dishes, [or] hang new blinds. My dad put in an air conditioner for me because I went through chemo in the summer and I knew I was going to be miserable, things like that. I knew for them, that was part of their coping process as well. As a result, we did get a lot closer and we learned to appreciate every single moment in the relationship that we had together. Every single time that we could spend time together, there's just an appreciation of each other, I think that comes from that.

Dr. Harpham:
That's just beautiful. Charlotte, how about you? How did accepting help change your relationship?

Charlotte:
I think that part of the problem, part of the stress that I had before I even got cancer, was trying to be everything to everyone; to be perfect. I think that that was really a lesson in life that I needed to learn, is that I can't do everything. And I think that it changed my relationship with my parents in that I realized what it takes--what family means. I work a lot and long hours, and teaching you kind of bring it home with you, too. I realized that I missed my family. I missed having that physical closeness because I talk to them all the time, but I don't necessarily get to see them. So that brought us closer.

With my husband [laughs] it was a little different. It changed things. I was actually going to ask Lisa, but maybe it's not the appropriate time to ask her, but it changed the way I look at my marriage. I have such huge respect for my husband for the time that I was in the hospital. But for the times that I wasn't, I have a huge frustration with me still doing the dishes or doing things that need to be done as much as I could even though I was so sick. And him saying that he was tired and he couldn't handle this or that. Except for when I was in the hospital he was perfect. He was incredible.

Dr. Harpham:
How did you deal with that tension?

Charlotte:
Well, I complained a lot! [laughs] You can ask Rachel.

Rachel:
Yeah! [laughing]

Charlotte:
I journaled a lot, and I am seeing a counselor and I'm trying to reconcile that. I think I sort of had this idea of what our relationship was like. And I've kind of got a more objective outside view of what it's like, in that I am the one who pushes and I am the one who is the main caretaker, and that has been a struggle as well.

Dr. Harpham:
And it brings up the point that the cancer is in one person. The cancer is in the patient, but the cancer experience affects everyone.

Charlotte:
Oh, definitely. And it's been so, so hard for him. That's his worst nightmare for him, is for me to be sick, and I've been sick twice. It makes you look at the world differently. Rachel and I have spoken about this, about the first time you go through it, you think, "Oh well, this has been a blessing in disguise. It's been such a wake-up call for me and a learning experience." And the second time you go through it, you're like, "This is awful! This is just plain awful!" I mean, of course, you're going to learn something from it. I have to create some kind of meaning from the experience. It has to mean something to me, because it's so horrifying that if you don't learn something or change something, it's just too horrifying.

Dr. Harpham:
And like with other life lessons, sometimes you do learn it differently or better the second time around.

Charlotte:
Yeah. I just was recently reading this thing about belly dancing, and they were talking about the different gods and it's the Hindu religion. They were talking about how these female deities would come into your life, and if they couldn't inspire you to change, they would slice through your life in order to bring you closer to God. I thought that's such a great symbolic representation of a tragedy.

Counseling: Dealing with the Emotional Aftermath of Treatment

Dr. Harpham:
We've been talking about the importance and the difficulties of obtaining or accepting support during treatment. You know, people usually recognize the need for support when a patient is going through cancer treatment, but let's shift a little bit and talk about the role of support during recovery after completion of cancer treatment. Rachel?

Rachel:
Well, I'm one of these people that I went through my entire treatment not having any therapy. And it wasn't until I finally finished my stem cell transplant and was on the road to recovery, and I realized that I should talk to somebody I should deal with some feelings that I was having. So I finally have been seeking therapy since then. Not group therapy, but one-on-one therapy, and it's been very helpful. It's been very helpful to talk to somebody, because I guess I didn't realize a lot of the emotion that was inside of me.

The first couple of times that I was in therapy, I just cried all the way through it. A lot of it had to do with depression and all the things that come with going through your stem cell transplant. Because you think that your stem cell transplant finishes and then, okay, all of a sudden I can pick up where I left off. Well, it's not like that. Every single day is still a struggle to deal with the aftermath. And not only do you deal with the emotional aftermath of being afraid that you're going to have a recurrence, but you just don't feel normal like you do, like you did. It's a new normal, and no longer am I as social. I'm just as happy to stay home, and whether that's a symptom of the depression or whether that's-- I don't know, but I've just changed a little bit. The whole survivorship thing of dealing with the emotional turmoil of cancer is very, very difficult.

Dr. Harpham:
Well, I wrote a book called, After Cancer: A Guide to Your New Life, that covers the medical, practical, emotional issues of recovery after completion of treatment, and that book is a lot longer than the book I wrote about going through treatment, because there really are a lot more issues after completion of treatment. During treatment it's almost--once you've made your treatment choice, it's almost mechanical. It's crisis mode, it's very short-term goals. Get from this treatment to the next treatment. After treatment is when many patients begin to process what happened and try to create, as you call it, that new normal.

Charlotte:
This is Char, and can I say something?

Dr. Harpham:
Please.

Charlotte:
I think that you also, you kind of perceive yourself differently, and I think that--I forgot what I was going to say now. It was good, too! [laughs]

Dr. Harpham:
[laughs]

Charlotte:
Oh, I don't remember. Anyway, I have chemo-brain.

Dr. Harpham:
Chemo-brain!

All:
[laughing]

Charlotte:
It was really good though, darn it!

Dr. Harpham:
Well, you can come back. Well, I think it's this idea that a lot of people think with the last treatment it's over and you really don't have special needs any more.

Charlotte:
Oh! I know what it was.

Dr. Harpham:
Go ahead.

Charlotte:
I was going to say, it's gray! Everything is a gray area. You look back and you're like, "Well, was it really like that?" And you start questioning yourself, and everything is gray, and everything is--in some ways it's a blank slate, but then you're still carrying around that mountain of baggage. My fingernails are still peeling off. My eyelashes are breaking off. I have a 'fro though, and I'm real excited about it!

Dr. Harpham:
[laughs]

Charlotte:
But, I think you just--everything is so gray and then you have to decide like you said, how to create a new normal.

Rachel:
This is Rachel. Can I say something else?

Charlotte:
Yeah. Sorry.

Rachel:
I think sometimes, I have felt that the post stuff that I had to deal with is sometimes worse than what I had to deal with when I was going through chemo. That is because at least when you were going through chemotherapy the doctor could tell you more black and white, "Well, that's probably a side effect of that," or they could pinpoint things that you were going through a little more so than now. Because now it's, "Well, we're just not sure." It's like Char says, it's all gray and they don't know. I can't get any answers right now. Everything is "wait and see". Yes, I'm in remission, but now everything is "wait and see". Well, sometimes I feel like, well, I don't want to wait and see. I want to know now! Am I menopausal? Is what I'm feeling now because I'm depressed? Is what I'm feeling now because my hormones are all over the place? Or is this way I'm feeling now normal as to what other cancer patients feel? And it's just an emotional roller coaster that is just harder to me almost than the physical part of chemotherapy.

Charlotte:
This is Char. I think it's much harder, because it's all up to you now. I was really frustrated with-- my medical team at Cedar's was absolutely incredible, like Rachel said--but I felt like they kind of wanted me to keep a stiff upper lip. And I thought, no, I'm not going to. If I want to cry, I'm crying! And if I'm frustrated, I'm frustrated. And if I tell you that I'm having a bad day and I don't feel good and my Port-A-Cath® hurts and all these things; I'm going to be real. But I felt like they kind of were trying to get me to suck it up.

Dr. Harpham:
So, where did you go for support after you finished your treatment?

Charlotte:
Counseling, my family, I researched on the Internet, my friends. My friends also got me Molly Maid Service. And I would go to school and talk to them, and I talked to my students about it. By educating and helping other people I felt like maybe it's a way I'm controlling, or having some kind of say in what happened to me. But definitely, counseling helped, and I do one-on-one counseling.

Dr. Harpham:
Did you read anything about medical, practical, emotional issues after completion of treatment?

Charlotte:
Well, actually sort of, I've read Love, Medicine and Miracles. The first time through I had tons of articles and stuff on the Internet. I talked to other cancer survivors and I have some other books here, but sometimes you become inundated with all the research material and you just kind of want to be a 'normal' person again. And so, I haven't read anything. There is a book called, "Seeing the Crab," that my counselor recommended, but it's called Seeing the Crab, A Memoir [before] Dying and so I couldn't handle it yet, but eventually. I'd like to read your book, too.

Dr. Harpham:
What about you Lisa?

Lisa:
It's interesting that we talked about this, because actually I am on medication now. I've been in remission this is beginning my third year with the Hodgkin's. And the thyroid cancer, I'd been in remission since the end of 1992. And I went through a period last year, and I still kind of find myself very easily moved to tears, very easily. But I kind of went through the same thing. I didn't know if it was my hormones, I thought maybe, okay, am I menopausal? Did the chemo speed it up? And now, even though I'm only going to be 37, because I just felt like I wanted to jump out of my skin.

So I have to say that I probably haven't done as much, you know, the counseling thing. I don't know why, it just didn't occur to me that maybe I should go see somebody and do some one-on-one counseling. Maybe I didn't completely let go of control, and I thought; okay, now I'm done with treatment, and that's it. You know, I'm going to be fine; my hair's going to grow back. And it hasn't been until, like I said, this last year that it really hit me. I talked to my oncologist and I went to her, and I said, "I'm really, really having a hard time and they can't find, the gynecologist can't find a hormone problem. Everything looks good. What do you think?" And she said, "Well, you know, it's not unusual for people even like you two years after treatment to fall into depression, because it's finally catching up with you." So she was real supportive in that way, and so that's kind of where I am now.

So, even two years after, going on three years, I think it's still something that we're always going to carry with us, even though I don't wake up in the morning and have that be the first thing on my mind. My hair's all back. It's long again. So I don't look at myself and see a cancer patient any more like I used to, but there's still that residual. It's always going to be with you, no matter how far you get past it, and you always will live with, "Okay, is it going to come back?"

Lisa:
I think that that is just something-- but thankfully, at least for me, it's not something I wake up in the morning and think of like I used to. And I don't think of it twenty times a day, and when I think about how I'm going to describe myself, that's not always the first thing that comes out of my mouth any more. "I had cancer twice", where it used to be.

Dr. Harpham:
And it's interesting how, if you have cancer, people go to the doctor and get treatment for it. If you are bleeding, if you are vomiting, people go to the doctor and get treatment for it. But if you are feeling depressed, if you are just not feeling right emotionally, many times people will put up with it or try to ignore it instead of treating it as their body tell them that something is not right. Why don't we see, if we can find out what's causing it and see if we can do something about it. Because there are effective ways to treat depression.

Lisa:
This is Lisa again, and I did everything I could before actually surrendering and saying, "Okay, maybe I need some medication." I don't know if it's because I thought if people knew that they would look at me differently. Because I guess I always thought of myself as being that boat that's on not rough seas. I've always been kind of even keeled and laugh really easily and things like that. Then all of a sudden I was crying for no reason, and so I figured, well, okay, it has to be hormonal. It can't be that I'm just depressed. There has to be something else. So I had to get over that, and it's just been recently that I've gotten over that.

Rachel:
Oh gosh! Recent, after three years! This is Rachel, by the way. Oh my gosh!

Charlotte:
This is Char and if anything, the talk shows and us talking to each other and as patients, the medical field really needs to be reformed. Because I think they barely glaze the surface unless you come to them and say, "I'm depressed and I'm crying and I don't want to go out. I'm just--my whole life feels upside down, and it just looks darker than it did before." They don't do anything.

I kind of felt like the nurses and doctors were encouraging Rachel to just suck it up and not cry in front of anyone. I kind of felt like they were encouraging me to just suck it up. They would say, "Well, Rachel was so great, and she had this great attitude and she never complained and she was totally happy". And I'm thinking, okay, the girl is going through a stem cell transplant! Somebody's not seeing that she needs a shoulder. Who is not seeing that? How can you be a doctor and see these things and not-- I mean, it really needs to be reformed.

How can you go three years without your doctor saying, "Hey, you might have some residual issues, and when you do, we can come and talk about it." That's nothing on you. I get so frustrated because I help so many different cancer patients and stuff at my work, and kids and their parents and other colleagues and stuff, and there's so much that they're not told.

Dr. Harpham:
And you're making a key point.

Charlotte:
Mm-hmm?

Dr. Harpham:
That effective communication is essential!

Charlotte:
It is!

Dr. Harpham:
That your doctor may not say, "Well, are you getting up in the middle of the night?" or "Are you crying easily?" or "Are you feeling down?" And when the doctor does not do that, you can help the problem when you bring it up.

Charlotte:
Right.

Lisa:
And this is Lisa, and honestly, I have to say in my oncologist's defense; I was in the process of going through and waiting for the blood tests to come back, for the gynecologist to tell me if my hormone levels were out of whack. And I was waiting for all of this, and my oncologist, I saw her in the meantime, and she said, "Well, why can't we just give you this in the meantime?"

Charlotte:
Yeah.

Lisa:
"Here, try this and maybe this will help you, and then just call me back and let me know."

Charlotte:
That's good.

Lisa:
So, in her defense, I have to say that. But for me, I continued working through my chemo. I was the one who was like, "No, I'm just going to blaze ahead, and I'm going to do this." And they didn't always see me forcing myself to step over the threshold into the treatment center, because I couldn't even bear the thought of doing that. I did force myself to suck it up a lot because I knew I had to. You know? I knew nobody else was going to do it for me, so I think maybe I went too far to the extreme, and they kept telling me, "You're doing so well. You're doing so well. We can't fathom how well you're doing. You're still working? Oh, my gosh!"

Dr. Harpham:
And it is a complicated issue. You bring up the idea that you get a lot of positive feedback if you're a cancer warrior. If you do it all, if you keep working, if you're always upbeat, always positive; people pat you on the back. People like that. The non-medical people are more comfortable with that. It's easier to be with somebody who's confident they're going to get better, who's not talking about dying, than someone who's very frightened or who's very pessimistic.

Lisa:
And honestly, I was one of the youngest patients that my doctor was treating, so I think in that sense--most of the people she treated were elderly. So to see me come in and be that gung ho, okay let's do this and let's get it over with because I want to get out of here and go to lunch with my mom. I think that was a relief for her, and probably made her just a little more relaxed with me. They didn't have to hold my hand as much, that kind of thing.

Charlotte:
This is Char. I totally agree with you, and I think that's what pulls you through the experience. But I also think, like Wendy said, you get feedback from that, and I wish that it was a system that knew better. That to pat you on the back and say, "You know, you don't have to carry the world on your shoulders. You don't have to be Atlas." You know?

Lisa:
Mm-hmm.

Rachel:
This is Rachel. Yeah, there were times where I felt like that too, but there were also times where nurses and doctors and medical people were very helpful and aware that I needed somebody to talk to. I was seen by a social worker when I was in the hospital, and I think everybody just does the best that they can. It's just really hard sometimes for nurses and doctors because they're spread so thin. It's really hard for them to give the personal attention to each patient that they wish they could give, and I understand that. I wish it could be different, but I think that that's just an unfortunate reality.

Dr. Harpham:
But it's important to recognize that there's a health care team that is composed of not only the doctors and nurses, who are really the only people who can best tend to your medical concerns. There are also oncology social workers and technicians and support groups and psychologists and lots of other players in the health care team that can focus on these psychological, emotional, spiritual issues; your chaplain, your rabbi, your minister; these sorts of people.

Taking Steps to Preserve Fertility

Dr. Harpham:
I'm going to shift the topic a little bit because you can add some valuable input about a very complex and emotional topic, and I'm talking about fertility. The types of chemotherapies used to treat Hodgkin's disease, the upside is that they're effective, and the downside is that they impair or destroy a patient's fertility. Now men can have their sperm frozen before the first treatment, but it's a more complicated, time consuming, risky and expensive endeavor to try to save eggs or embryos. Lisa, can you share with us your experiences regarding your fertility?

Lisa:
I think for me, when I went through the Hodgkin's, I wasn't married any longer. And being that my son is 9 years old, it wasn't forefront on my mind, because I had had a child. But I did have to deal with the issue that most likely I wouldn't be able to have another baby. There came a point when, and I knew after the treatment that fertility-- or even before I took the treatment, that fertility would be an issue. But I think for me, I didn't really give it as much focus that maybe I should have. Because after treatment it really, really hit me hard and I didn't do anything about it prior to treatment.

So it hit me hard that most likely I wouldn't be able to conceive again, and so I had to come to terms with that somehow. And being that I'm just about 37, I guess maybe it was a bit easier for me. Because when I got sick, I think I was 35, or just about to turn 35, the second time, so I was kind of winding down. Now unfortunately I'm in a serious relationship, and he and I have had to deal with that issue, and he is a paramedic so he's got medical knowledge which is real helpful for me [laughing].

Dr. Harpham:
Right.

Lisa:
But that was an issue that had come up in our relationship, and from the beginning I was real honest about it. And of course he knew, and so it is an issue, but I guess I've come to terms with it and I'm okay with it now. But I won't say that I didn't shed any tears and that I didn't have a lot of sadness, because I did. I always wanted to have two children and I just have one.

Dr. Harpham:
Char, what about you?

Charlotte:
Well, I'm kind of in the thick of the whole fertility thing right now. I'm married and I've been married even, like I said, before the first time. And I've always been the mom growing up. I had open heart surgery when I was a year old, and all the doctors and nurses told my parents that I was going to be such a good mom, because I was so attentive to my little babies that I had in the hospital with me.

And it's been very hard to sort of, I don't know, deal with the role, my role changing. I'm adopted. My mom had cervical cancer, but I do have a brother that was their natural child, so adoption is not out of the question. It's very hard. During cancer you sort of lose all the symbols of femininity; I lost my hair, I lost my curves, I was down to 93-1/2 pounds. I looked like a little boy [laughs], a little bald boy, and I still felt feminine, but on the outside I didn't look like it.

I've been reading mythology and dealing with that. I've gained most of my weight back so that I look kind of a normal weight. But being infertile has been very hard. I was really glad that I did the fertility procedure. The first time the treatment did not sterilize me and then the second time, it did. And it's been real hard for my husband, too. He really, really wants to have children. We were planning on getting pregnant a week after I was diagnosed the first time. We had, like, set a date at the end of September.

Dr. Harpham:
Right.

Charlotte:
I was diagnosed, and so that sort of changed our plans. Then I was re-diagnosed right about the time when we could start thinking about having kids. It's been interesting, but now I'm on this kick that I want to adopt a Chinese baby girl, and my husband keeps telling me, "No. No Chinese baby girl." [laughing]

Dr. Harpham:
[laughs]

Charlotte:
You know, they need a home and we have a home and--

Dr. Harpham:
Who did you turn to to help you as you felt the brunt of this loss?

Charlotte:
Well, my mom. She had a hysterectomy, and so that was helpful. But my mom sort of just swept it under the table and went on with her life, and I don't think she really dealt with the full issues. My friends a little bit, but mostly my counselor. We've talked. We did a lot of symbolism and reading about mythology and what really makes femininity, and shed some tears and [sighs]--. I talk a lot to a lot of people, and I'm really open about things. I talk to my students about the fertility procedure that I did, but I think my counselor has been the best resource. They sort of let me explore the idea of loss, and I guess I've grieved the loss and I'm still grieving the loss.

Dr. Harpham:
Did you mention before that you had eggs or embryos saved?

Charlotte:
Yeah.

Dr. Harpham:
What is the status of that?

Charlotte:
They're still saved, and we're still paying the fee to keep them frozen. There's been issues in my relationship with my husband, and I've become very critical because life is short and precious, and I'm not willing to put up with some of the things that I did before. And so that's been a real scary issue, what happens if this doesn't work? And you can't freeze plain eggs. You have to freeze frozen embryos, and so that's been a source of major anxiety from the very beginning. Because he had made a comment about what's going to happen in a court battle and all this stuff, and I was completely panicked. I even looked for a donor at work. I had someone who said that he would donate so that I could have at least some that were just mine that I wouldn't have to worry about being taken away from me. That was very hard.

But now, we're just waiting. The doctor said they wanted us to wait at least three years to make sure there's no recurrence, and also to regain my strength and my health. But I'm not sure. I'm not making any hormones at all except for what I'm taking orally, so I don't really know. I don't know the procedure. But it's painful. Those shots feel like you're being pinched with pliers! [laughs]

Dr. Harpham:
[laughs]

Charlotte:
It was so painful! But it's worth it, and I always tell my students at school about my kid-sicles and they get a big kick out of that.

Dr. Harpham:
[laughs] Rachel, what about you?

Rachel:
Well, my experience with fertility is quite extraordinary, as I think you'll agree. My decision to go through with the procedure had to be made literally overnight. My doctor had told me that I was going to need to think about that. And so I was thinking about it and it was getting nearer to when I was going to start my treatment. Because of when my cycle was supposed to start, I made an appointment as soon as I could to get in to see the doctor.

He called me back that same night that I had seen him and told me because of my cycle and because of everything, and because my doctor in L.A. expressed haste in getting me started on my chemo, I had to decide that night if I was going to do fertility treatment. In which case I'd have to come in tomorrow and get trained how to do my injections. And guess what? My insurance doesn't even cover even one red cent! And if you want to do all this stuff, we need you to come in tomorrow with ten thousand dollars. That's basically, what it was like for me and I couldn't believe it! I was just frantic. It was the most horrible, horrible, horrible thing for me! And the only people that I could turn to, of course, were my parents. I called my parents because, I don't have ten thousand dollars lying around, but they felt horrible because they couldn't help me. It would have been such a burden, and so I thought that I was not going to be able to do it until an angel friend of mine fronted me the money. Just said, "You can have it. It's yours. Take it."

Rachel:
So, the next day I was able to start the treatments. It was two weeks of hell just trying to do it according to clockwork like you have to. I also had to think about donor, because I was a single woman and not married. But I was in a relationship with a man named Wade, who is still my boyfriend, and we had only been dating about three months at the time. And things were going really well, and I kind of said to him, I said, "Hey Wade, if I need a sperm donor, I'd rather it be somebody that I know, and you don't have to say 'yes', you don't have to say 'no'. It's entirely up to you, but if things work out between us and two years from now we decide we want to get married or whatever, then we'll regret not having taken this step." So he thought about it and then agreed to be my donor. And so he was my donor, and we went through some legal issues, and I feel like such a cutting edge person--

Others:
[laughing]

Rachel:
--because I've had a stem cell transplant and I've had fertility treatments. And I was one of the first few people, I'm sure, that has signed an agreement about ownership of embryos. He signed over complete ownership to me, so they're mine, and I can use them in the future if he and I aren't together. The lawyer that we asked to help us draft the agreement said, "I did some research and I couldn't find anything that anyone's done like this so far. I think that this is one of the first times that this has happened." And just the legal issues that you have to think about. It's just amazing when it comes to that!

Dr. Harpham:
And this is all on top of the cancer!

Others:
Yeah!

Rachel:
And this is all on top of the fact that I'm dealing with, yes, starting my treatment, and I'm feeling absolutely horrible. And my symptoms are coming back worse by the day, and I know that I'm getting close to getting treatment but I have to take this time to do this. It's physically hard on a woman who's healthy, and then all of a sudden to do it while your blood counts are really low and you feel really horrible. It's just another bit of icing on the cake.

Dr. Harpham:
How do feel about what you did, looking back?

Rachel:
Looking back, I'm so glad it's over and I'm so glad that I have them frozen because I know now with everything, with my hormone levels being as they are, I know that I'm going to need them. It was a horrible experience, but I'm glad I did it. I'm glad it's done. It's behind me. Over! And I had eleven frozen grand-sicles, my mom calls them.

[Everyone laughs.]

The Role Spirituality Plays in Survivorship

Dr. Harpham:
When you talk about getting cancer, going through rigorous treatment, making these very difficult decisions, talking about family; you mentioned about finding meaning in all this challenge and loss, and cancer as a spiritual journey for patients. Lisa, can you tell us a little bit about your spiritual journey?

Lisa:
The first time I had cancer, it was the thyroid cancer. My son had just been born, when we completely got the diagnosis, and I was really, really angry. Really angry! I remember I had been raised going to church and, but I remember standing in the kitchen of my apartment, washing baby bottles and screaming at God because I was so angry. I mean literally screaming, not in my head, but just screaming.

Charlotte:
Good for you!

Lisa:
And then, the second time I had a real close church family. I know for a fact, that between people at my church who knew other people, and my family being spread across the country, I knew that there were people all across the United States praying for me, whether they knew me or not. And that was my biggest source of comfort. It was like, I jokingly said, I had a DSL line up to God. I had all these people who were inundating him with prayers for me and relatives would send me cards that they had offered up this mass for me, or whatever at church. So that was the biggest source.

But then I knew I had to find meaning in it also, because my belief with my whole life is that even though there have been horrible things that have happened, somewhere down the line I can turn around and look at it and make some sense out of it. And for me, I knew, and I always tell people this; that God didn't give me the experience of having cancer to waste it.

And so therefore, any opportunity I can to help somebody else go through it. Because it's all too fresh in my mind how horrible it is to go through it; or how it was, to see my doctor's face change the instant she realized that they had found a mass in my neck the second time. Just in that split second, I mean, she didn't even have to say the words, I knew it. I will always remember that.

So I try to help wherever I can and I beat myself up because I don't do enough. It is so important to help other people and to hold their hand if they need it, or just talk; just share experience. I certainly wouldn't have gotten through that without it. And I think spiritually it does play a big role because if you can lift somebody up that way, then even just to make them smile, then maybe that will help them get through another 30 seconds of their day or whatever. And if we do that enough, then it will just keep continuing. So that's kind of how I got through it. Other people helped me, and so I in turn feel obligated and have an intense desire to turn around and help somebody else that might need it.

Dr. Harpham:
What was the role of your spirituality in dealing with your loss of fertility?

Lisa:
Well, I think because I had been blessed with a child, and I understand and believe in my heart that children are a gift, that I thought, okay, all I've got to do is the best job I can with him and be the best mom I can be. Because some people don't even get that opportunity and I still believe that that's all God wanted me to have, and I accept it. I have enough faith to know that that's just the way things have worked out, and that's just the way it is. So I guess there is an acceptance on my part.

Dr. Harpham:
Charlotte, what role did spirituality play in your survivorship?

Charlotte:
Well, you know I've read research about prayer, and I too was on a prayer chain all over. All over! I actually have cousins in Singapore, too, so it was kind of all over the map.

[laughter]

Charlotte:
I think that the power of prayer is amazing. I think that I was at a disadvantage because I don't have a strong religious or church connection. And I think that was a disadvantage because I didn't have that faith to fall back on; the faith that everything was going to be okay and to work out the way it's supposed to work out.

My views are much more eclectic. After taking yoga and reading everything, I sort of have this eclectic view of what is spirit. I believe, I truly believe in my heart that everything is exactly where it should be and I am experiencing what I am supposed to experience for whatever reasons that are unbeknownst to me. But I think that having cancer has really, like we talked about-- I spoke of before the Dakini, and from what I've read, I'm not well read with the Hindu religion-- this connection. It sort of clears away all the extraneous junk that you don't need. I really feel that my connection with spirit, and I'm still developing my whole spiritual outlook, but my connection with spirit has become much stronger.

Dr. Harpham:
So it's one of the sliver linings of your cancer experience?

Charlotte:
Absolutely! It's a necessity, and I think that I had that connection the first time, but it's been intensified as I have gained a little more peace and a little more comfort in that. And I do feel compelled to help people, other people. That's one of the reasons I became a teacher is that I feel the ripple effect. That when we help other people, when we extend what has been extended to us--whether it be spirit or other people helping us, or my dogs even being there for me--I think that that creates a ripple. And when we extend that it also makes us more whole. I think that's the whole point of this whole thing; the suffering and the joy and the struggle and the journey that everybody takes. To me that is the point. That's what adds meaning to it.

Dr. Harpham:
And patients talk of seeing the world differently after cancer. I recently heard someone call it "cancer vision", and it was a clearer, more real way of seeing the world. People often feel that in certain ways their lives are better after cancer. Not that they'd want cancer, not that cancer is good, but having gone through cancer, they see the world in a way that makes their lives better.

Charlotte:
This is Char, and I definitely agree with that. I think that I'm still struggling with some of the anger and frustration over it. I had said before when Lisa was speaking-- I said, "Good for you," when she said that she was just screaming. Not that she was upset with God, but that she was letting that out, and she was expressing that and just letting that get out of her. Because I didn't do that and I'm carrying it around with me. So I'm struggling with that. But I do believe that my life is better; that I am a deeper, wiser, more compassionate, maybe more empathetic. I think I was pretty compassionate before, but more empathetic person, now that I've been through. And I feel stronger because, you know what, bring it on! If I can handle this, I can handle anything!

Dr. Harpham:
[laughs]

Charlotte:
My students pop off with these things, "Life's so terrible!" I'm like, "Oh, please, come on now! Let's talk."

Dr. Harpham:
And earlier in the show, I think it was Lisa mentioned about letting go of the perfectionism. Things don't have to be perfect, and when you let go of that, it releases a burden.

Charlotte:
Yeah.

Dr. Harpham:
Rachel what about the role of spirituality in your survivorship?

Rachel:
I think for me, the first time it was a little bit stronger. At the time I was first diagnosed, I was pretty active in a church, a local church. When I was sick and going through everything, there were so many people who were praying for me, and I felt really loved. The second time, I wasn't so active in church. I had relocated and then joined a new congregation. But I wasn't going really as a member, so I didn't know really a whole lot of people.

By that time, the seriousness of it really hit me. The first time you go through Hodgkin's they tell you, "Okay, there's a high chance you're going to be cured, and it hardly ever comes back, and blah, blah, blah." And then the second time you get it, it hits home about the seriousness, and it becomes more serious than it was before. And I think there were times where I didn't have as much faith as perhaps I should have. Despite that, things sometimes or things usually, just fit; things usually just work out. I knew I had a lot to be thankful for and I do thank God for that and all the positive things. I know there are a lot of negative things too. I don't know why God lets people go through stuff like that sometimes, and I ask those questions to myself. But there were times where I had more faith than others and there were times where I let other people have the faith for me.

Dr. Harpham:
Mm-hmm.

Rachel:
And I just said, "Okay, everyone else is praying for me, so okay, I'm just going to concentrate on me right now, and think about what I'm going through and let everybody else compensate for what I'm not doing." And sometimes I just come and go with how strong I feel spiritually. But a lot of it has to do with my moods and hormonal changes and the uncertainty of the future. I do feel that everything does happen for a reason, and there are plenty of good things that are going to come out of this. God's not stupid. He knows. He only gives it to people who are the strongest, as they say. I was able to handle it and I just pray that he doesn't want to test me a third time.

[laughter]

Charlotte:
Me too!

The "Healing Odyssey": Not Being Afraid to Live

Dr. Harpham:
Well, we've talked about a lot of different topics, and I'd like to try to wrap it up together with one last topic, and that is, can life ever really go back to normal after cancer? What does it mean to feel normal after cancer, after a second cancer? We've talked about information and support and communicating and the spiritual and emotional sides of cancer. Lisa, what does it mean to either go back to normal or create this new normal after cancer?

Lisa:
I think that's it. I think you find a new normal. I think that it's like we have all agreed, you look at the world differently, and at least for me, and I think for you as well, you have some kind of other physical issues that you need to deal with. Like, I know I've got some peripheral neuropathy, and I know that my right hand tends to be cold or go numb even now, and that's because my chemo went in on the left side in my port, and I know all that. So I'm reminded, and I think, "Okay, well that's because of the chemo." Or, I'm going in for a CT scan tomorrow morning, and I don't want to go, but I have to. It's a follow-up. It's something I have to do.

I think hopefully as we get farther and farther into remission, and hopefully reach that line where they use the "cure" word, I think those things, at least for me, I think my memory of the bad experience gets a little bit smaller. It's not so prominent in my head. I'll always carry it with me, but things blur a little bit. The bad stuff kind of blurs and it's not in the forefront. And I've learned to give myself a break, if I don't feel so good. Well, I went through some difficult stuff physically, and I do consider myself a fighter. And if it does come around a third time--whether it's the Hodgkin's or the thyroid cancer--I'm the same way, it's like, "Okay, bring it on!"

I already know more than I did before what to expect, so that unknown for me, which is my biggest fear, is not as big anymore. And I think, you just take each step each day as you can, and enjoy it, and tell the people that are in your life that you love them every time you talk to them. That's one thing I noticed with my mom and dad. When we say goodbye, it's "I love you". And that's not something that used to happen, because it's been brought to our minds that, "Hey, I might not see this person, or life can change in an instant, and they need to know how I feel about them."

And so that's the new normal. There is no old normal. I'm not the same person that I was pre-cancer, and I never will be, and I'm not necessarily upset about that. I kind of like myself better now.

Dr. Harpham:
Char, what about your new normal?

Charlotte:
I think I agree with what Lisa said, in that I like myself better. I'm a stronger person. I'm much more self-aware, especially with the therapy that I've been doing with my counselor. It's still pretty raw for me. I'm still in the fear stage that it's going to come back. But I just went back to work last week, and so I'm back into the grind, and boy, am I back into the thick of it! I do look at the world differently, and I am more thankful in a centered kind of way, rather than, oh, I'm so thankful, and blah, blah, blah, and I go out and I'm overextending myself.

But I just don't think you can ever go back to what you were before. It's like going to war and then coming home and being expected to be the same person, the innocent person that you were before. You just aren't. You're aware. Like when the September 11th happened and I thought, "Yeah, that kind of thing happens." I was sad, but I wasn't shocked by it. These things in life happen that are horrifying, but that doesn't mean that we can't get through it, and we can't keep moving in a direction that's positive and that benefits and makes the world a better place.

I think that my commitment to doing that is stronger than it ever has been. To provide a place of peace and comfort for other people's hearts, but also for my own, and that's something I didn't do before. I tried and tried to push myself to be better for other people, but I didn't make a peaceful sacred spot for myself. And I think that that has changed.

Dr. Harpham:
Rachel, how about your normal?

Rachel:
Well, my new normal is, well, I'm tired a lot or physical things that I have to deal with. And I don't like that but I'm alive, so that's a good thing. I just have to cut myself a break. As Lisa said, I've been through a lot and I need to cut myself a break and realize that I can stand up for myself. And if I don't want to go do that or if I want to stay home, I'm going to stay home, and I wasn't like that before. I guess that's one of the good things that cancer has taught me, is to be more assertive and stand up for what I feel and not be afraid to express what I'm feeling, so that's a good thing. And all the things that cancer has taught me I am thankful for. But I don't know, if I had the choice of going back a couple of years and not having to experience it, then that might be kind of a nice thing as well, because it's no easy thing having to think daily about that.

Dr. Harpham:
Except it's not a choice, Rachel.

Rachel:
It isn't. No.

Dr. Harpham:
And the starting point has to be that it's not a choice.

Rachel:
Yeah.

Dr. Harpham:
And the choice is about what you do--

Rachel:
What I do now.

Dr. Harpham:
Yeah.

Rachel:
And I've contemplated what I'm going to do now. I have a pretty good life resume right now and things that I want to do in the future. One of the things that I have done since treatment to help cope is; I went on an odyssey called "Healing Odyssey", which is a retreat for women cancer patients. That taught me a lot about things that I can do to cope, and I thought to myself, why don't I push the edge and live, and not be afraid to live. Maybe I'll go skydiving.

Dr. Harpham:
Mmmm!

Rachel:
Maybe I'll do things that I hadn't thought about doing, and doggone it; I'm going to do it! Even over the past week, I've contemplated going back to school and getting my Master's Degree in graphic design, like the world is mine and I can no longer think about, am I going to be here in three years. Now I need to start making some long-term plans and get a goal. I think that it will be so much easier to deal with everything when I have a goal; something to focus on.

Charlotte:
This is Char, and I wanted to say I think it's so hard to live in the joy when you're trying to slough off all of the crud that you carried around with cancer. But like Rachel, I think that that's where it's at; it is in the joy of things and the love of things, but it's no easy task. Even though you recognize it, you can't go back, and it's not a choice, and you have to keep moving forward. It doesn't make it any easier, but it makes it much, much sweeter.

Dr. Harpham:
And the way I see it, a cancer diagnosis encourages us to know both the fragility and the hopes of life, and with this knowledge to live most fully. I hope our discussion has helped to sort through some of the issues that may be part of your life. A big thanks to our guests, Lisa, Charlotte and Rachel, for their willingness to share their stories, their thoughts, their feelings, and a part of their lives with us today. I hope that some of their experiences will help you think about and talk about your own concerns in healing ways. I encourage you to listen to other discussions we have available on the website or by telephone. 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.

Help |  About CSN  | Legal & Privacy Information