Donna Rae: Caregiver, a sister's story

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Hi. My name is Donna Rae and I am from Vermont. I am married and I have two kids. Basically, my story starts with my brother. He was diagnosed at the age of 30 with testicular cancer. He actually battled that for two years, which actually spread to his bones. After the two years, unfortunately, he did not survive the battle.

While David was fighting his cancer, my children were very young. One of them was 4 and the other was a newborn. He was actually diagnosed when I was pregnant with my second child. I used to make monthly trips--he lived in Florida at the time--and I made monthly trips down to Florida to see him, because I wanted to share his experience and let him know that he had a lot of support. My parents were actually taking care of him one hundred percent of the time. I would come down on the weekends to kind of relieve them, at least once a month.

Its impact on Donna's young children--good and bad

The biggest impact it had on my children, was that my son--who was the older one at the time--he adored Uncle David. He really couldn't understand the physical changes that David went through from all the different treatments that he had--and eventually he was paralyzed. To the fact that my daughter was born, and he was in the hospital really ill when she was born. We called the nurse's station at 11 o'clock at night to let him know that she was born. He was such a great uncle that that really got him through another few days when he was really having an adverse reaction to chemotherapy.

But the most important part of that was that my kids learned a lot about somebody who was that ill. They have a different viewpoint on cancer, than I think a lot of other kids. Unfortunately, theirs is somewhat negative because they know that their uncle didn't survive it. They have a hard time when I tell them that somebody else we know has had cancer or has been recently diagnosed. They kind of have a look on their face of--is this, you know, what's going to happen? It's almost a horror. And to them, I have to get them to realize that not everybody--most people do survive, nowadays. It was seven years ago for Uncle David. Medicine has changed and it can be now a positive. You can survive cancer, and you can have a positive outcome.

But the most important part is that my daughter, who was the infant when he was so ill, she never really got to know him. He was her godfather, and she adores him to this day. He's almost like a god-like creature to her. Just a little funny story about that is that she has this picture of him in her room of him hanging on the wall, and it's almost like a poster-size picture. At her birthday party last year, her 8-year-old birthday party, all the little girls were in her room looking at her posters. She has the Back Street Boys and Brittany Spears and all those kind of posters and there is this picture of David. And the girls looked at it, and I was standing outside the room listening, and the girls looked at that poster and they said, "Who's he?" And a couple of them were like, "Well, I don't know who he is." And somebody said, "He must be a rock star, because he's got a poster!" So, I just thought that was the funniest thing, that if Uncle David could have heard that, that these little girls are thinking that he's a rock star. Because he was so into music--he wrote his own songs--that he'd finally made it in somebody's eyes as a true rock star.

Gleaning lessons and sharing David's writings

The thing that I learned the most from David's experience--actually several things--first of all is, I focused on basically getting a diagnosis earlier. He was not diagnosed for almost six months with his initial complaint to his doctor. As a result, I personally went through something like that this year, where I had a lump in my leg and it was undiagnosed for almost three months. I was sent to an orthopedic oncologist and regular orthopedics and everybody. Finally, it was diagnosed after surgery, that it was a benign growth. However, what I would like to say was that I pursued it. I didn't wait the six months, like David did, to get the final answer. I really went after it, and pursued the doctors, and made them refer me to other specialists instead of waiting the length of time that he was made to wait.

David, when he was really sick, wrote a story that was called "The Tin Man's Dream". It was a story about his life, his passions, his favorite things, and a lot of his unrealized dreams. He wrote it during the last--approximately a year before his death. He shared it with me one day in his hospital room. I took it with me, and it really meant a lot because it was him, and it was his story, that he shared with me, very personally. And after he died, I tried to get it published, actually in several magazines, to try to share with other people, what some of the emotions he was going through when he was ill. And I was very unsuccessful, [laughs] in getting it published in the magazine.

So one day driving home from work, I came up with this brainstorm to publish it myself. So what I did was; I wrote letters to cancer centers, orthopedics, oncologists, friends, and relatives all around the country. And asked for people to submit stories--or to have friends submit stories that related to their experience with cancer whether it be as a caregiver, as a health care professional, as a patient themself, a family member--whoever it might be. I accumulated all these stories and poems and drawings, and I put them together into a book. It was called "Voices of Courage"--and I published it. I actually printed about five thousand copies and sent them around the United States.

I received grant funding through several sources to pay for this and published it to make it available for people to read. So that they could realize that experiencing cancer--there are several emotions you go through at the same time. How do you explain it to children? Or, how do children understand when their mother is ill? Or, how do children understand when they are ill. What they are going to be going through themselves? So I made this book available for all these different individuals around the country.

The inspiration behind a second book of stories

I got a lot of feedback from people that read it. Everybody asked when I was doing the second one. I had no intention of doing the second one originally, but I did decide to pursue it, and started taking submissions again. And again, I received twice as much as I received for the first book. The book includes a section written entirely by children. There are drawings by children. There are poems by children. There are also humorous sections where people take a look at--one of them is called "A Trip to the Bedpan Palace". There is also a poetry section where people write different parts of their experiences, whether it be dealing with tamoxifen, or something like that, and they put it to a poem. Then there are other sides that are just people's personal stories. They shared their experiences as either, again, a health care provider, a relative, or an individual undergoing cancer treatment themselves.

And again, I distributed that around the country to anybody that was interested in it, and it's still in print, it's still available, actually. But the real value to these two books that has been shared with me from across the country is that people have shared it with newly-diagnosed cancer patients or somebody that's recently been diagnosed as cancer-free. It's become a source of--I don't want to say inspiration--but it's become a source of strength for a lot of people that didn't know that it's okay to feel this way. Or, it's okay to explain cancer to a loved one, not knowing what they are going to be going through but understanding that it's okay to have all these emotions. That you're going to have the ups and downs. You're going to have the good days and you're going to have the bad. You're going to have the positive encounters with physicians and you're going to have the negative encounters with physicians. But it's something that a lot of people have found a lot of value in. In understanding that they can express themselves and they can go on. And again, write something that makes them feel better, so they can share it with their relatives.

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