Dee Dee's Story: Endometrial Cancer

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Hi, I'm Dee Dee and I'm a cancer survivor. I'm 48 years old. I was diagnosed in January that I had endometrial cancer. I had been sick since March of 2000. I was diagnosed with it in January of 2001. And then I was operated on for the cancer February 13th of 2001, so my treatment, it's just been--it was really fast by the time I found out I had it to when I was operated on. It was all the first part of the year 2001.

I started having all kinds of problems, and a woman of 48 years, I thought I was going through the change. Well, I kind of just thought that's what happens to you. You bleed a little bit, you don't, you bleed a little bit, you stop, you bleed, and you stop. Finally my doctor had me come in every three months for Pap tests, and he was looking, I presumed, for cervical cancer. I had cryosurgery back in 1992 and they said I had precancerous cells of the cervix.

So then when all this started I figured, well maybe, there was something going wrong. So in March I went and had a Pap test. I went back in June. In June of 2000 the doctor put me on birth control pills, so I was on birth control pills June, July and August of 2000. Okay, after I was off the birth control pills in August, I had an okay period in September. October, I started to bleed again. I bled September, October, November, until December. So, I knew there was something going on somewhere. And every time I went to the doctor he would tell me, "Well, come back in three months for a Pap test. Women your age, they sometimes have problems." Well, he said I wasn't going through the change. So I couldn't imagine what kind of problem that a woman my age would have, that I would have to contend with this. So, that's when I decided to change doctors.

Cancer Diagnosis: Doesn't mean that it is Doomsday

So, I changed doctors, and I went to my doctor, my new doctor, the first time January the 10th, and when he looked at me he knew there was something wrong. I was worn out. I was so tired. I couldn't walk. I had circles under my eyes. I mean, I was a complete mess. He said that when I walked into the office he knew there was dreadfully something wrong with me. So he decided that he couldn't do really anything for me the first visit, because there was just too much, I was in too bad a shape, and he had to try to get my records.

Well, my old doctor never did send the records. So then I went back in two weeks and we had to start at ground one. So he tried to do a Pap test, which he couldn't do because I was bleeding again. So then he had me come back and he tried to do an endometrial biopsy in his office. Well, I was under so much pain I couldn't take it. So then he said that he would put me into the hospital the next day and he did a D&C. While I was under he did the endometrial biopsy.

I found out for sure I had cancer on January the 24th. That was the day that he told me when I walked into his office. I'll never forget, because I knew. I knew I had it, because when I looked at him and he had very sad eyes, and then he told me that I had cancer. Well, naturally the first thing I did was, "How long? How long do I have?" Because I had been through this before; I had a nephew and a sister that I was both caregivers for. After two people in your family pass away with cancer, you really don't have a lot of hope because it kind of ebbs from you. It kind of leaves your body, and even though part of you wants to hope. I've seen two people go, and I thought, well, I'm going to be the next.

And he was just beside himself that it wasn't doomsday. We were going to do this and we were going to do that. I had my choice to go to the hospital over here in Belleville, Illinois, or to go across to Barnes Hospital in St. Louis. I opted to go to Barnes, and they did a complete hysterectomy and they took all my lymph nodes out. Well, it was kind of an experience. I had never been in the hospital before and the next day you get up and you walk around, and you're just praying, "Dear Lord, just please, please, let them get all of my cancer." Well, I was one of the lucky ones. They took out everything and my lymph nodes were clean. They went down and they looked, I mean they took out everything, and I am cancer-free today. I take no treatment. I took no radiation. I feel wonderful today.

Finding a Doctor that Listens Could Save Your Life

And what I want to tell women now is that when you feel bad, when you know that something's not right--I knew something was not right, I just could not get anybody to listen to me.

I'm overweight, but I'm very, very active. And see, I couldn't walk. And people say, "Oh well, you're overweight." I've been overweight all my life and I never felt like this. I knew something was wrong. I knew that, somewhere deep inside me there was something that didn't click. I knew that the doctor that I had wasn't listening to me. And I searched and I found a doctor that listened to me, and it saved my life. Because right now at this point in my life I know that if I did not change doctors, that there is no possible way that I would probably be here today. Luckily, I changed. And there are a lot of people that maybe wasn't quite as lucky as me.

I just can't express how it feels to know, that I did go through a traumatic experience, but I came out a survivor and that's what it's all about. That you've survived something, and why did God let me survive? Maybe it's because I have something to do yet. Maybe if I can save one person, if I can tell one person this isn't the end of the world. There's always hope, and they're coming up with all kinds of new medicines and they're giving chemo that finds just the cancer cells. It doesn't destroy everything. You know, they're doing all kinds of things now. Even though it's the darkest hour, there's always a little glimmer of hope, and you have to go for that. You have to go to that light and you have to find out what's important and what you're left here to do.

The Rewards of Being a Caregiver

And when my sister had cancer, she had passed away in April of 1997; she was the one that I mostly cared for. Cathy had lung cancer and it was inoperable from the start. She only had a five percent chance with treatment. The cancer went from her lung to her liver to her brain. She was diagnosed, I believe it was August or September of 1996, and she passed away April of 1997. Cathy, she never gave up hope, she never one time. She never cried about it. She took it all in stride. And we did everything we could for her. I mean, she ruled. She ruled up to the very end.

I would go to her house and I would be there for like twelve hours a day. And my nephew, Dan, was there, and my sister, Janice. Dan would come from work and Janice would come from work and when Cathy cracked that whip, boy, we had to get up and do what she wanted. We made life so easy for her because she never had to ask us. We knew what we had to do and we did it.

And Cathy was such a wonderful, wonderful sister. We would all line up at night after we had all got done eating supper, and we got her ready for bed and stuff. We got to leave in shifts, and Cathy would point to one of us and tell us, "You can leave now." She always let Janice go first because she said Janice had to go to work. So she'd let Janice go probably around 7:30. Then she'd make me stay until around 8:30, and man, I'd grab my purse and out of her house I'd go. It was always a joke for us. And then Dan was always left there, the last one. He always got the job of tucking her in, even though her husband was there, Dan had to tuck her in bed. When I think back at the stuff we had to do-.

I think a lot of times when you're going to be a caregiver; the person shouldn't have to ask you what has to be done. You know when people say "Call me if you need me?" Well, you don't need that. A lot of people, they're very prideful and they don't want to have to ask. And I think so many times it would be so much easier if people would just pick it up and start to do it. You don't have to be told what to do. Just, you just do it. Take care of that person. And don't make that person feel like they're making you go and do something you don't want to do. You just do it for them because it's such a rewarding thing afterwards to know, that that person that you loved and that you cared for; that they knew that you really did love them and that you would do anything for them.

And then my nephew, Kevin, I was also a caregiver for him. He had childhood cancer that didn't hit him until he was age 21, and he fought a courageous battle until he was 23 and it took his life. He was going to be a policeman and he would have been such an asset to his community, but now I think that he is probably one of the best angels in God's heaven. I know that a lot of times him and Cathy, I feel that they look down on me, and they say, "Well, you were so good to us, but your job here on earth isn't done yet. You still have something else to do."

The Mystery of Life Purpose

I'm trying to make sense of what God still has me here on earth for. I don't know for sure what I'm supposed to do, but maybe it has something to do with getting people attuned to their body and to their doctor. And to be a caregiver for somebody or give them a little glimmer of hope, maybe a grin, a smile, or maybe a pat on the back. I don't know what I'm here for. But it's been a real, real hard time, and I know that I'm not the only person that has these struggles, but you know that we're all here, we're all put on this earth for a purpose, and one day we'll figure out, what we were here for. The mystery will be revealed.

I know that prayers do help. Prayers; anybody who can pray for you, get them to pray. Especially right after, when you're first diagnosed, because you're going to feel like there's nobody else in the world going through this but me. My God, I'm the only one but you're not. There's thousands and thousands of people who feel that same way, and if you only just give a helping hand or a grin or a smile. Send a simple note that, I know how you feel, or if you see somebody in need, reach your hand out and help that person, because that's what this is about.

Cancer is a curable disease if caught early, and a lot has to do with how you feel. You have to know that whatever treatment you're going to get is going to work. You have to have hope. You have to have faith and you cannot have any negativity around you. Once you find out that you have cancer, the first thing I did is that I told my family and my friends that I did not want any negativity. I wanted all positive thoughts just to surround me, because I knew that I was going to make it! I knew it! I had faith and that's what got me through, because I had faith.

And anybody that has cancer, it's so hard at first because I think you try to keep everybody else around you calm. You find that you're caregiving to them at first, because they're so devastated that you have cancer. So then you tell them, "Oh, it's going to be okay. I'm going to be fine." And you're like, this is role reversal here, you should be telling me. But it seems right at first that you have to tell everybody around you. I think once that they can see that you're calm and that you've accepted this. Then I think they accept it a lot better after they see that you're calm about it. Because at first they don't know what to say to you. You know, like, "Oh, I hear you have cancer"

What was funny with me is that my husband went around--and they said I had good cancer--my husband just thought, well, this is the greatest thing in the world. My wife isn't going to get sick. She's not really bad. She doesn't have bad cancer. She has good cancer! Well, there was something kind of ironic about it, because I told him, "Cancer is cancer." But it was a kind of a funny story, because he thought it was, well, there was nothing wrong with me; I got good cancer.

Having Faith and Taking Life in Stride

The story is that you just got to have faith. You just got to know in your heart that there are people who care and you just got to keep going on. Keep putting one foot in front of the other, no matter how hard the battle. I know I had it easy and people are going to say, "Oh well, you didn't have to have treatment." No, by the grace of God I didn't have to have treatment. By the grace of God I changed doctors. If not, maybe I would have had to have a lot more than what I had done. And even though I didn't have to have treatment, that doesn't stop the fact that I know that cancer can come up in my body any place else, just because I had cancer once and it was removed.

Okay, now comes the good part, when I tell you how I feel. I feel now that I'm still really, really tired, but they said that it would probably take about a year to get physically back to what I was. I was so tired for so long that I think I've kind of grown accustomed to being lazy, but not really. The main thing that really bothered me about this whole thing was when people would talk about how old they were. It always made me feel young to know that I was still menstruating. I still had a period. So I was not an old woman because I still had a period.

And then one day, you wake up and you have--not that I want to bring my periods back, God help me! But one day, I woke up and I didn't have a period. They had taken everything out of me. I have no sexual organs at all to do nothing. And I woke up and I thought, oh my God, I can't have--not that I wanted kids, I'm 48. But I thought, my God, I'm an old lady now. Oh my God, what's going to happen to me? That was really hard for me to comprehend that I thought at first, oh my God, now my life is going to be over."

But you know what? I can still be the same person I was before. I can still do as much as God permits me to do. I can be an inspiration and I can be a thriving woman now, regardless of if I menstruate or if I don't. That was only a portion of what I was. That was only a portion of the person that I am, and not having the period does not change the person that I am inside. It might have changed certain physical aspects of my life, but it hasn't changed who I am and mentally the person that I am. I thought I would really be more affected. Well, I guess maybe I thought I would be more affected by it. But at first, I was.

Now, I'm glad those years are over with. Now I can concentrate on a lot of other things in my life than worrying about, oh my God, am I going to start my period today?" And after you've bled for eighty days, I think I've had just enough of that. So, thank God, I'm over with that part of my therapy now. I had to kind of deal with it myself because you really can't talk about this in a group with a lot of women who haven't had periods for twenty years. They're like, "What the heck's wrong with you?" But it was a big deal for me that I still felt young. So now I'll just grow old gracefully.

An Entire Family Affected by Cancer

And also I wanted to bring up the difference between being a caregiver and a patient, because at times I was both. And it's funny now, because as a caregiver you did what you did and you saw need and I just did it. Being the patient, you were a little lax on having to ask for help. It was like; I did for so many people for so long. I was caregiver for Kevin in 1995, well really from 1993 to 1995. I was caregiver for my sister, Cathy, the end of 1996 to 1997. Then you feel that now it's time for them, for the remaining family to care for me, and that was not what I wanted. I was the one that was going to care for them. And it was hard to accept that my nephew, Dan, had to come and vacuum my floors. My God! I can vacuum my own floors, but no, I couldn't vacuum my floors. It was my sister, Janice, going to cook supper, bring supper over. No! And ironically, my sister, Janice, that was my caregiver, has breast cancer now. She had cancer when she was caring for me. My cancer was diagnosed in January, like I said, of 2001. My sister has breast cancer, and she was operated on June 13th 2001. She had a lumpectomy and she is undergoing chemo. She just got done with her fourth treatment today, and she has four more treatments to go. She should be done December the 7th and then she will go through radiation.

What's unbelievable is, eight days after my operation, February the 13th, February the 21st my brother was operated on for kidney cancer. He had a kidney removed. So my family has been devastated by cancer. We've all had it: all four of my mother and father's children. We've all had it. And my nephew, Kevin, I told you he had the childhood cancer. Well my niece, my sister Janice's daughter, she had breast cancer diagnosed in September of 1996. She had the breast removed and reconstructive surgery done. So she's been cancer-free for five years. They couldn't believe that Tracy was the one who got the breast cancer first and then it hit my sister.

So, we've all been affected by this. When one of us has to go to the doctor, we're all on pins and needles until the person comes back. Because you're thinking who's next? Who's going to be the next one to get it? That's why we have to find a cure, because I've seen it affect my whole family. My whole family and God help us, I'm glad my mother and father both passed away back in 1990 and they did not live to see their whole family devastated by this disease. Because it probably would have broken my mother and father's heart and they probably couldn't have lived through knowing what all we had to go through.

But each of us helps each other. We each pick each other up and we give each other a hug and a kiss every time we see each other. We tell each other that we love each other, because you never know. You never know. And it's amazing how even though it can devastate a family, the survivors of it are bound together. Because we're the core of the family and you have to do that. You have to just keep going on, knowing that one day there will be a treatment. And one day we will find out why a whole family is devastated by this disease.

I've often wondered why we can't get a research department to find out, was it a gene that we all shared? Was it the water that we drank when we were children? Was it the air we breathed? But we, all four of my mom and dad's children had it, and we all four had different cancers. We had kidney, lung, endometrial cancer, and my sister with breast. What's the common denominator? What's the link that holds all of our cancers together? There has to be something that we all did, you know? And the people next door to us, when we were kids; none of them has had cancer. What did our family have? Why did cancer pick us? Does cancer pick and choose its victim? We don't know, but all we know we have to accept what was put on our plate, and we do. We do it every day.

And when one of us is down or one of us has got a problem--my sister, Janice, calls me up crying and I start crying with her and then I'll tell her, "You know, Janice, it's time we don't cry now. It's time we pick ourselves up. We got tomorrow to face. Whatever happened five minutes ago, that's already history. We have a new day." And every day we wake up and we thank God that this is the day that God has given us, and we make the best of that day. And there's nothing more you can do. You just have to face each day and you never give up hope, because I think that hope will sustain you even in your darkest hours. And let the people around you know that you want them to keep hoping, too. Don't let them be in despair.

Just be good; be good either way. If you're the patient, be good when the caregiver comes to help you, and give them encouragement. And if you're the caregiver, do all that you can for the patient because it's not easy either way. Either toss of the coin, it's not an easy road. It's hard on everybody. But you all share the one thing: you have hope and you want that person to get better. And you want to be better and you want to continue with your life and you want to let everybody know that it's going to be okay, either way.

Walking in 'Relay for Life'

Okay, now the last part that I'm going to talk about is that I walked in the Relay for Life. The first walk was for the cancer survivors. Okay and we were standing in line. There were around 75 of us that had to go up to the podium. It was out in the park and you just walked up to this little podium and you said your name and your type of cancer and how long you were a survivor. Well, I was in the second row and all these people ahead of me were walking up and they were saying, they were so-and-so, lung cancer, nine years; so-and-so, this kind of cancer, breast cancer, 18 years and all this.

I felt so terrible, just a four-month survivor then, because that was two months ago. I'm a six months survivor now, but this was when I'm a four-month survivor, and I walked up to the podium and I said "My name is Dee Dee, endometrial cancer, four months." And when I walked where they were standing, I mean, they came up to me like, I was one of them. I didn't have to have it for years. I could have only been a survivor one day and it would not have made any difference to those people, because we were all survivors. We all survived.

It was kind of touching, when I think of it, that here I felt so much less than them because they had survived so much longer, and they looked at me and said, "No, you're still one of us." And I really, really did like the camaraderie that they give me; that I was one of them. That we were all in this together.

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