Talk Shows & Stories : Featured Stories : Julie

Julie: Losing Your Dad to Lung Cancer

Recorded January 18, 2002

Listen With 21 minutes, 25 seconds.

Username: Jewel

Go to Jewel's personal Web page

Hi, my name is Julie, and I am from Indianapolis, Indiana, and I am here to share a story with you about my dad. Basically the love of my life, basically a good friend who I lost this past August 30th to lung cancer.

No Classic Symptoms: The Shocking Diagnosis

My dad had just turned 67 years old five days before he passed away. He was diagnosed in April of 2001 with lung cancer. He had no signs whatsoever that he had lung cancer. He basically was having pain in his lower back and it got enough to where he made himself go to the doctor. On his visit to the doctor, they took several tests. They thought he might have a kidney infection, and included in those tests was also a chest x-ray. A week later my dad returned to the doctor's office for the results of his tests and they informed that they saw a spot on his lung. My father was sure that they had the wrong chest x-ray because he had no signs of--he had no coughing, he had no blood coughing up, no blood in stools, what have you; what everybody associates lung cancer with. They told him that they figured that since it was only that spot that they saw, that they figured that it probably had not spread and that they caught it early enough.

When he told my mom and myself and my two brothers that they found this spot, we were all in shock. We could not believe it, but we also felt that he would be okay; that the doctors said that they probably caught it in time. We are talking about a man who had suffered through heart problems, and for us to think that my dad and my brother's dad and my mom's husband had cancer, was just beyond belief to any of us. My dad suffered a heart attack at the age of 38, and he had his first open heart surgery at the age of 45. He had a second open heart surgery at the age of 59, and through that second open heart surgery he also had a staph infection which put him in the hospital for two months. We thought we would lose him then. We never in our dreams thought that we would lose my dad by cancer. We never thought that we would watch this man who was so strong, dwindle to a man who had to depend on us to help him. A man who could do everything and now all of a sudden he can't do anything.

After his original diagnosis he went to have further testing, and we found out that the cancer had spread. It had spread to his brain. It had spread to his bones. The cancer was so bad in his bone on his shoulder that it ate right through the bone and broke his arm. He had to have a post put in his arm from his shoulder to his elbow, and it had spread already to his liver and his kidney. It was at that point that I, my brothers and my mom, lost our dad. He never came back again. He went through five months of pure hell. They started him with radiation treatment, and they did chemo treatment on him. They did six weeks of radiation five days a week, and four weeks of chemo one day a week. This put my dad in a life that was unrecognizable to him, to us. The pain he that he was going through, and it wasn't merely pain in his body. It was painful watching a man suffer, knowing that he knew he was going to die. And it was the pain that we as a family went through watching our father go through this.

Searching for a Cure, Searching for Hope

Through the experiences that I went through in the five months of watching my dad, the only thing I could do was get on the Internet until 3 o'clock every single night, and I was bound and determined to find a cure. I was not going to give up until I found a cure for my dad. I was writing letters to anyone out there that could help me, that was going through the same thing, that had gone through the same thing, that had a survivor that had the same exact thing that my father had, that could give me some hope. I could find basically nothing except people that could help me and give me advice of how I could help myself. I talked to his doctor, and his doctor basically was very blunt and said, "Your dad, if these treatments do not work, will not be here in three months." I mean, that's as blunt as you can get, I guess, and I guess I wouldn't ask any more from a doctor except to be a little more sympathetic towards your feelings.

And through my searching, I found a new clinical trial drug that was out on the market that was showing positive signs for lung cancer. I talked to his doctor about this, and his doctor said that he was not on that clinical trial, that he was on other clinical trials, and so he could not offer this to my father. I called and called and called. I made more phone calls to find out what oncologist out there could help, that was on this clinical trial program, that could help me to get my father on this clinical trial. There were only three oncologists in the state of Indiana that were on the clinical trial program. I was lucky enough to find a doctor that was willing to take my father in, not even knowing him, but to have him come in and get him on this clinical trial if he qualified. And through all the data that--through phone conversations and telling them all about my dad, they said that he would qualify.

My biggest factor was to get him up to Fort Wayne, Indiana, because that's where I needed to get him, which is a two-hour drive from Indianapolis. I had an appointment all set up for my dad. I went to pick him up, and my dad could hardly walk. My mom had him in the hallway of our home, holding him up. He didn't have his shoes on yet, and I walked in and I said, "Dad, I think you're too weak to make this trip." And he said, "We're going. I'm going!" He tried to get his shoes on, and he couldn't even hardly do it without falling. It was at that point, I knew I couldn't take him for a two-hour drive up to Fort Wayne. That was going to be more painful for him.

So my dad never got to make that trip, and my dad never got to be on that clinical trial. But what I did find out was that, his doctor here in Indianapolis could have gotten him on that drug. It was paperwork that he had to fill out. It was stuff that he needed to do--red tape to get this clinical trial on his program, but he didn't want to do it. But the doctor told me he couldn't get my dad on this, and that was a lie. And through all of this I have found that there are doctors that will help you and there are doctors who don't really care. And unfortunately, the doctor that my dad had, looked at cancer as, "You've got cancer, you're going to die. If the treatment I give you doesn't work, you're going to die."

Staying Hopeful and Strong for Your Loved One

For a long time while my dad was sick, I told myself, "You are not going to give up, Julie. You are going to do everything in your power to help him." And I feel like I did. And one day, I got a call out of the clear blue sky from a doctor here in Indianapolis, who didn't know me from Adam, but somebody had given him my name. He was not on this clinical trial thing either, but he asked for all my dad's records, he asked for all the information he needed to go ahead and try to get on the clinical trial program. And guess what? He did it! He went through red tape, where the hospital takes a month to decide whether they'll let a clinical trial come in or not; he got it done in one day. He was willing to go to my dad's house and help him, and this is a doctor that didn't know me and he didn't know my father but he was willing to help.

And the biggest thing that I have learned out of this whole process is that, don't ever think that the doctor that you have is the best. If you're comfortable with him and you think that that doctor is doing everything in his power to help you, then stick with him. But if you are uncomfortable and you have doubts, find somebody new! Do as much research as you can to find ways to make yourself knowledgeable, read up on everything, get on the Internet, help yourself, so you can help that person. Be strong for the person that is ill. My biggest thing is that when my dad gave up, I stayed positive, and so did my brothers and so did my mother. We all stayed positive for him, because if we were to get to the point where he was, where he gave up hope, it would have made it worse. And so us pushing him helped him, even though he might have hated it. [laughs] He got mad at us. I got mad at him, but that was just the love that was coming out in all of us, and imagine the frustration that my father was dealing with knowing his life was coming to an end, but us children would not give up.

We went to the vitamin stores and got him on all these vitamins, and we would go out and buy him all this junk food just so he could eat. He wouldn't eat anything, and if anything sounded good, we'd go out and we'd get it. I don't care if it was White Castle or what have you, we would go get it. I would make dinners on Sunday at my home and take them to him. I would make favorite foods of his that I knew that he would like, and at least try to get down something.

I didn't have a lot of people that I could talk to through this whole situation. At least no one that really--I had friends that had lost their parents, but differently, either suddenly or different circumstances. It wasn't cancer. And the whole situation of watching your loved one dwindle down to nothing is a process of its own. Losing my father has been the hardest experience in my life. A part of me is gone that will never return. But the whole process of those five months of grueling pain and agony watching someone that you love slowly dying is the worst experience that I've ever had in my life.

Gaining Deep Empathy for Those Touched by Cancer

My father, as I said before, we thought we would lose my father to a heart attack. He would die in his sleep one night, and that wasn't the case. I would much rather my father had died in his sleep than watch him go through this. I would not wish this disease on my worst enemy. I know that my father is in a better place now. At least he is not in pain. But it doesn't take away the pain that I still feel, and the pain of wanting him here, even though I convince myself he is happier, I want him back. I want to touch his face. I want to put my arms around him. I want to dance with him again. I want to step on his toes. He used to say--when we danced together--he used to say, "Honey, you always lead." And I said, "I know, Dad, I like to be in control." But it didn't bother him. We enjoyed it. We had fun, and I just want--I have learned so much through this.

I have learned to respect and acknowledge the people who have gone through this. When I have known people, maybe not close people that have lost loved ones through cancer; I never really thought a lot about it. I never realized how heart-wrenching it was. That it just literally rips your gut out inside, until I experienced it myself. So now, I don't care who it is. I may not even know the person. When I hear that somebody has cancer, my heart goes out to them, because I know the pain that they're going to experience.

Shortly after my dad died, as I said, I was on the Internet until 3 o'clock in the morning every single night. And I wrote many different letters on different sites to people in hopes that somebody would respond to me with answers. The day after I buried my father, I got an email from a young gal, my age, I say young [laughs], that's good. An email from this gal who lives in another state, saying that she read a letter of mine somewhere; she couldn't remember where she read it. But she said, "I just found out that my dad has lung cancer too, and he's only 63 years old, and I'm wondering how your dad's doing and what you have found to help. If there is anything new that you can tell me that has helped your dad." I unfortunately had to write her back and tell her that we had just buried my daddy a few days ago.

But I will tell you this; she came at the most opportune time in my life. We wrote each other every single day. She shared the gruesome pain that she was going through with her dad, the same exact pain that I experienced and it was so comforting, but at the same time sad, to be able to help someone. I was able to help someone get through some pain, and at the same time she was helping me deal with my pain, because she could relate to exactly how I felt. Unfortunately, her daddy just passed away the 19th of December and when I got her letter that he passed, I cried. I didn't know her from anyone, but I grew to know her and her dad. It was like her dad was like my dad and she was like me, and we shared so many, many things that were in common. As sad as I am for her and her family, I can't but thank her for what she did for me, and I know she feels the same way. That has been an uplifting thing for me to be able to share something with someone that has experienced the same thing.

I just can't say enough for the people that were there for me and my family. My best girlfriend, who just lost her dad a year ago this past December, not through cancer, just suddenly, she is there with me in a heartbeat. And all those people have helped me through this, and I am grateful for the family that I have, and most of all I am grateful for the dad I had. I couldn't have asked for a better dad in my lifetime, and I know that he listens to me every day. I talk to him all the time and I know he's there. I know he's probably cussing at me half the time, when I'm doing stupid things, and that's okay because that's what he'd do if he was here. But those types of things make me laugh, and I focus on those things, and those things get me through the good times and even the bad. I can laugh at the bad times now, because most of the bad times are actually kind of funny, and my dad will live on forever to me. And one day I will see him again, and as far as I'm concerned, he's just watching over me and my family right now, and my brothers and my mom. He's just our angel now, and he's the best thing that ever happened in my life. And that's all I have to say, and thank you all for listening.

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