Donna: caregiver and a rectal cancer survivor

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Username: plantlady

Hi. My name is Donna. I'm 46 years old and I'm married, with a daughter. I live in Central New York. September 21, 1992, my daughter was diagnosed with Stage IV rhabdomyosarcoma, which is a soft tissue tumor which normally affects children under the age of 3, and she was five years old at the time. She was given a very grave prognosis and we were told she most likely would not see her tenth birthday. She was immediately started on high dose chemotherapy to shrink her tumor, which had already metastasized to her lungs. She was very, very sick but she was a very brave girl. We continued with the chemo until the original tumor, which was on her pubic bone, shrank enough for her to have surgery, which ended up being about five months into her therapy. Quite honestly, I thought my world was crumbled, but that sure wasn't going to last long. I had to help my baby, and I had to fight. And that's exactly what we did. There's nothing worse than watching your child suffer, and know there really is so little you can do, except to pray and keep her comfortable, and very obviously, rely on your doctors. And I have to say that the cancer center that we went to were unbelievable. They were absolutely so wonderful.

I decided very early in this whole ordeal to be as active and positive about a recovery as possible. After obviously many many many tears and many many prayers, but I refused to believe that she would die. And I told the doctors that. I made everything as positive as I possibly could do, meaning hospital visits, which she spent in the beginning months, many many many days/weeks in the hospital. I literally brought her bedroom to the hospital, and everybody in the hospital would come and say, "Oh my gosh," There'd be fresh flowers, her own bedding… It took me, every single time we'd go the hospital, it would take me at least two hours just to get her room together. But it made everybody, it made her feel good and it made everybody else feel good too. And her own food. I made it as much like home as I possibly could. Her toys, all that stuff. I also, I learned how to change her feeding tubes, administer all her meds, dressing changes, I frankly became as close to a nurse as I could be without a degree. And you know what the most important thing was? I prayed, a lot. And the doctors really were so wonderful because they let me take care of her a lot at home, and I know that that made a really, really big difference.

Growing pains

To make a long story short, after six surgeries, two for recurrences in her lungs, massive radiation, and more chemo drugs. Including, she was involved in two Phase I clinical trials, which the last one she had is the one I believe that helped her the most, that cured her. My daughter, now, her name is Jackie, is a five-year survivor, and she is considered cured. She's a first person in our clinic with her diagnosis that has ever been cured, and the only side effect that has occurred is hormonal due to her pelvic radiation. She's very small, she doesn't have, you know, her teenage stuff, puberty and all that kind of stuff. She is on hormones and she is now starting to grow, and she's beautiful. She's an A plus student in school, she's a dancer, she's a model, she's a regular teenager. There's one thing that my daughter always said to me, I mean, she would say this when she was five years old: "Mommy, I don't want people to say, oh, this is a little bald headed kid that has cancer." because they're not. They're still kids, they're still children, you know. It's like doing, feel sorry for kids that have cancer, just don't do that. Because they're still children, and they still fight and they're still beautiful and they're still kids. But I was a caregiver for my daughter Jackie, and I got through that, but to my dismay, cancer decided to stay with our family. And eight months after Jackie's cure, I was diagnosed with Stage II rectal cancer. Gosh, I mean, it's like a club we don't want to really be in. I wish I could win the lottery instead, but I didn't. But frankly, I have to say it was easier this time, because I already knew what to expect. I knew about chemo. I knew about radiation, and the hardest part was not being able to care for my family. I was very, very very sick, for a number of months. I underwent seven months of chemo and I had massive radiation in an area of my body where the sun don't shine. [laughs]. I just have to laugh because I just find it really funny. And I also had a surgery. I have a colostomy. That's the only side effect that I really find, is that people that know that I have a colostomy--which I find no problem with--feel like, "Well, you're gonna have it reversed, right?" I'm like "No, I have, that's fine, it saved my life."

The silver lining: there is always hope

I'm now approaching January 11th of 2002, I will be a two-year survivor. I'm doing fine, and its really amazing, it's really amazing. But my experiences as a caregiver and a survivor have given me the hope and knowledge to say that cancer is not a death sentence. Never, ever give up hope. I'm living proof, and my daughter, that with the grace of God, medical science and pure guts, we will overcome. I believe things happen for a reason, and this has given me true insight into what is really important in life. I've found a strength in my family and myself that I never knew existed. And cancer is not all negative. As a matter of fact, and these are just two little notes that I want to add to this; is that there are many wonderful things that happened during our treatment. One is, when, during Jackie's treatment, there were two nurses that were taking care of her, her primary nurses. One was a male one was a female. And they kind of liked each other. Now you have to imagine, this is a six-year-old, and she decided to play matchmaker. She'd be like, "Oh, you know, do you like??" she would go and do all that kind of stuff. Well, to make a long story short, those two nurses ended up together, and got married. Jaqueline was one of her bridesmaids in their wedding. And right now they have two adopted children because they did not think that mom would be able to have any kids, but she has since found out that she is pregnant with twins. And now they're gonna have a family of four!

And for me, my big thing was I used to have very very very long hair. I didn't care about having a colostomy. I didn't care about having my body cut up. I didn't care about any of that stuff, but my hair was like this really big thing for me. When I had a wig that sat on my dresser, every day, and I would look at it, and I vowed I would not, I didn't want my hair to fall out. I chopped it all off so it would be really short. I just didn't want to wake up any morning and see all my hair on the pillow, because that's what happened to my daughter. Her hair just came out in clumps. That's a very very devastating thing. Very devastating. But anyway, to make a long story short--I say that a lot, I'm finding out here as I'm talking--but my hair got thin, but I did not lose it all. Many jealous other cancer patients, by the way. But my hair has all grown back in and it's short and it's curly. I've gotten more compliments about my hair now than I ever did when my hair was long. So I call it "my cancer hairdo". So, we have a new do, and I just want everyone who listens to this to just know that there is hope. Never, never, ever give up hope, never, never, never, and that's my message.

Role reversal

One thing I have to say is that my daughter does not like talking about cancer at all. As far as she's concerned, now, she is cured, it's behind her. I have to say that it was a very, very difficult thing for her when I was diagnosed with cancer. Very difficult. But I also want to say that she was really wonderful. Because basically there was a good, oh gosh, maybe six weeks, over six weeks, when I literally could not get out of bed. And Jackie was the Mom! She was the Mom and she took care of me. Of course, Dad helped but I mean he had to go to work, so she took care of me. She did not, she didn't like the whole idea of her mom being sick. There were a few times when she did go and ask me, "Mommy, are you gonna die?" Of course, I'm not gonna die. But I don't care if your child is four or fourteen or whatever, the thought of your parent's dying, or being sick enough that they could die, is a very scary thing. But she once again, in her bravest form, and being the warrior that she is, she was there for me. And you know, she did adjust, so wonderful, but now that I'm okay, and she's okay, she doesn't want to talk about it. And that's okay.

And I'll tell you something, it's like, I can talk about it in a situation like this, because I know that this is an important means of communication, but other than this, I don't want to talk about it either. I mean, it's like every single time I have to go to the doctor for a checkup, I'm like being reminded and I fully understand what Jackie meant. We'd go for all these checkups, and she would say, "I don't want to go. Because it reminds me of everything." So basically once you've been through all your treatment and you know that you're okay, you don't want to think about it any more. So she wasn't thinking about it any more and then I got sick so she had to think about it again. So it's hard to--it's just a trail that you really don't want to keep going. I understand and I know how it feels. But she was wonderful, she was absolutely wonderful. And as a family we have grown so close, and so strong. But you know, on the same level, we're just like any other family. And she screams and yells just like any other teenager and is late for homework and late for school and this and that, and you know, all that kind of stuff. So you know, we're not any different than anybody else. We really aren't, we're not any different. We just have cancer in our family.

Some advice for other Survivors

I also wanted to add a little something else to all of you who are listening, that may have been or have been diagnosed with colon rectal cancer. I am 46 years old. I have a colostomy, and I just want you to know, that it's not the end of the world. And you know what? Nobody even knows that you have it. There's no red light over my head that goes and says, "Oh, gee whiz, this lady poops in a bag." You know what I mean? And this surgery saved my life. If this surgery, if you have to have this surgery, and it means that it will save your life, do it! My doctors went and asked me, "Well, if we could switch back and you could go back to the way that you were, do you want to? Let's go and reverse it." And after really not a lot of thought about it, I said, no because this is the way that I'm supposed to be. Yes, it does take a little bit of maintenance. Yes, it's kind of a pain in the neck, I will grant you that. But there's nothing wrong with it, and it functions just as normally in every aspect, every aspect. And that means personally, sexually, all those kinds of things. Hopefully you have an understanding partner. You know, it's more other peoples' views because they don't understand what this whole thing is all about. But it's not a horrible thing. It's not a horrible thing. And like I said, nobody would ever know unless you tell them. No ifs ands or buts about it.

I've had so many people that knew that I had rectal cancer, but had no idea that I had a colostomy until I told them. And I have no problem telling people, either. I mean, I really don't. I mean, it's not something to be ashamed of. Hey, we all got to do it, right? Basically we all just do it in different ways. So, please, if it means your survival and it means your health, don't hesitate to do it because it's really not that horrible. With a little bit of getting used to, you'll be fine. So I just wanted to just add that, because I know some people get really weirded out and really uncomfortable with the whole idea. But I'm here to say that it's not a negative thing, it really is a positive one.

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