Cheryl Weinstock, a health writer who has written for several publications including The New York Times and Woman’s Day Magazine, contacted me a few weeks ago after finding my blog. She was writing an article for Cancer Today Magazine-(on-line) reporting on a study focusing on parents with cancer. The study was designed to look at how patients with young children had a decreased quality of life due to cancer’s impact on their parenting ability. Concerns for their children also shaped their decisions about treatment choices. You can find her published article here.
From the very first time I witnessed the pregnancy test revealing its secret, I made a commitment to that tiny person growing within me to see them into adulthood. Cancer has jeopardized that commitment.
When I was diagnosed the first, the second, and the third time with breast cancer of course I was deeply depressed, but, at the same time, I was acutely aware being present for each of my children could not happen through sheer determination alone. It had to come from proven treatments. Treatments that were a gamble. No one knew if the drugs given would keep me alive. No one knew what side-effects would occur as my blood carried the drugs throughout my body. Even with all the unknowns, I was willing to try whatever treatment was recommended for me.
One of the questions I was asked during the interview was: Do patients with children make different choices concerning treatment than those without children? Since I am a parent of four children, I can only answer that question from that standpoint. My answer is, yes.
As long as treatment offers me a chance to keep death away then I was willing—am willing—to try it. If it offers me a chance to continue overseeing the care of my children, to continue being part of their lives even with possibility of sacrificing my quality of life then I will try it; it is that important to me. (Within reason of course, being alive and unconscious is unacceptable.)
For example because I was familiar with the drug Taxotere—having been treated with it during my stage one diagnosis and knew the side-effects it caused (hair loss, intestinal difficulties, fatigue, decreased immunity, etc) I welcomed it. If I had had no children at my stage IV diagnosis, I might have chosen to forego that drug. Instead I planned my life around the side-effects. Wanting to live for my kids is a fierce motivator.
During the process of Cheryl’s writing of this piece, we spoke a few times. In between one of our conversations I realized that the study she was citing concerning this issue of patients parenting with cancer I realized I might have been part of the study she was writing about. My suspicion was confirmed when I read her article.
It was six months after my stage IV diagnosis in 2013 when Eliza Park, psychiatrist at UNC Lineberger Cancer Hospital in Chapel Hill, NC interviewed me. My goal then as it is now was to live as long as possible because of my children. At this time—my third diagnosis with breast cancer—I had three soon entering college and one finishing fourth grade. The thought of not seeing my youngest to the end of her high school years was worse than the thought of my dying. She was 10 years old. How would she remember me? I had been her main caregiver, how would other family members—my husband, his parents—respond to her needs? I had a plan, would they care about that plan as much as I did? I was helpless. Completely at the mercy of whatever my cancer was going to do to me. It was a horrible position to be in.
(The results of the study are found here.)
Another question asked by Cheryl concerned my thoughts of whether an oncologist should educate patients about how each treatment can affect their ability to parent effectively. That question was also asked of me back in 2013. My answer is the same today as it was then. An oncologist’s job is to treat the disease. They can only guess how an individual patient will respond to and what side-effects might occur. I think oncologists should direct their patients to resources and professionals trained to help with parenting concerns—as my doctor did.
I do believe that an oncologist should build a caring relationship between themselves and their patient. Talking about children should be part of that relationship. Simple questions like "how are your children" can make a patient feel as if the doctor cares about their life beyond the hospital doors. My first oncologist was not so great at this. My second oncologist makes it a point to ask how everyone in my family is doing just about every time I see her.
During the study I remember being interviewed three times. Each time I suspected the goal was how to better serve this particular group of patients through the development of programs. Programs that would help parents as they stumble their way through talking about their illness with their children, helping them work through their anxieties about discipline, and having discussions with those who will take over their responsibilities when they no longer are capable. I suspect many parents would utilize such programs.
Toxicity of treatments does impact a parent’s ability to care for their children. Improvements in the quality of life for these patients—and for all patients with cancer—can only be achieved when less toxic drugs halting the progression of disease become available. In the meantime, professionals will continue looking for ways to help advanced cancer patients with children parent through cancer.
If you would like to read more about being a parent with cancer and the difficulties that children face because of their illness, please follow this link When a Parent has Cancer.
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Photo from article/Photo by Sasiistock/istock/Getty Images Plus
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When I was diagnosed the first, the second, and the third time with breast cancer of course I was deeply depressed, but, at the same time, I was acutely aware being present for each of my children could not happen through sheer determination alone. It had to come from proven treatments. Treatments that were a gamble. No one knew if the drugs given would keep me alive. No one knew what side-effects would occur as my blood carried the drugs throughout my body. Even with all the unknowns, I was willing to try whatever treatment was recommended for me.
One of the questions I was asked during the interview was: Do patients with children make different choices concerning treatment than those without children? Since I am a parent of four children, I can only answer that question from that standpoint. My answer is, yes.
As long as treatment offers me a chance to keep death away then I was willing—am willing—to try it. If it offers me a chance to continue overseeing the care of my children, to continue being part of their lives even with possibility of sacrificing my quality of life then I will try it; it is that important to me. (Within reason of course, being alive and unconscious is unacceptable.)
For example because I was familiar with the drug Taxotere—having been treated with it during my stage one diagnosis and knew the side-effects it caused (hair loss, intestinal difficulties, fatigue, decreased immunity, etc) I welcomed it. If I had had no children at my stage IV diagnosis, I might have chosen to forego that drug. Instead I planned my life around the side-effects. Wanting to live for my kids is a fierce motivator.
During the process of Cheryl’s writing of this piece, we spoke a few times. In between one of our conversations I realized that the study she was citing concerning this issue of patients parenting with cancer I realized I might have been part of the study she was writing about. My suspicion was confirmed when I read her article.
It was six months after my stage IV diagnosis in 2013 when Eliza Park, psychiatrist at UNC Lineberger Cancer Hospital in Chapel Hill, NC interviewed me. My goal then as it is now was to live as long as possible because of my children. At this time—my third diagnosis with breast cancer—I had three soon entering college and one finishing fourth grade. The thought of not seeing my youngest to the end of her high school years was worse than the thought of my dying. She was 10 years old. How would she remember me? I had been her main caregiver, how would other family members—my husband, his parents—respond to her needs? I had a plan, would they care about that plan as much as I did? I was helpless. Completely at the mercy of whatever my cancer was going to do to me. It was a horrible position to be in.
(The results of the study are found here.)
Another question asked by Cheryl concerned my thoughts of whether an oncologist should educate patients about how each treatment can affect their ability to parent effectively. That question was also asked of me back in 2013. My answer is the same today as it was then. An oncologist’s job is to treat the disease. They can only guess how an individual patient will respond to and what side-effects might occur. I think oncologists should direct their patients to resources and professionals trained to help with parenting concerns—as my doctor did.
I do believe that an oncologist should build a caring relationship between themselves and their patient. Talking about children should be part of that relationship. Simple questions like "how are your children" can make a patient feel as if the doctor cares about their life beyond the hospital doors. My first oncologist was not so great at this. My second oncologist makes it a point to ask how everyone in my family is doing just about every time I see her.
During the study I remember being interviewed three times. Each time I suspected the goal was how to better serve this particular group of patients through the development of programs. Programs that would help parents as they stumble their way through talking about their illness with their children, helping them work through their anxieties about discipline, and having discussions with those who will take over their responsibilities when they no longer are capable. I suspect many parents would utilize such programs.
Toxicity of treatments does impact a parent’s ability to care for their children. Improvements in the quality of life for these patients—and for all patients with cancer—can only be achieved when less toxic drugs halting the progression of disease become available. In the meantime, professionals will continue looking for ways to help advanced cancer patients with children parent through cancer.
If you would like to read more about being a parent with cancer and the difficulties that children face because of their illness, please follow this link When a Parent has Cancer.
Lisa, this is a great post, and you are doing your very best to be alive for your children. I agree with you about having an oncologist who is concerned about the patient as a human being. Mine is that kind of oncologist as well.
ReplyDeleteThank you, Beth, for being moved enough to leave a comment. So wonderful to hear you have a caring oncologist. My relationship with mine was a bit rough in the beginning. Looking back, I believe I was so upset about my situation I couldn't see she was actually on my team the whole time.
DeleteHi Lisa,
ReplyDeleteAfter my diagnosis, I was concerned about my kids too. That's stating the obvious I guess. I worried they knew too much because, in fact, they did. We had all just witnessed my mother's experience. My kids were older, but still it was very difficult. These days, they rarely talk about my cancer. It's just too hard. I can only imagine what it must be like for mothers and fathers with younger children. That presents a whole different set of challenges. I agree an oncologist can't be expected to handle everything, but certainly asking about the children and having resources readily available is very doable. Thanks for sharing about your thoughts on this and for taking part in the study. Here's to many more years of parenting.
Sorry that I didn't see your comment until today. Meant to hit reply when I responded, but it didn't turn out that way. My reply is below. Always good to see you here. Thanks!
DeleteHi, Nancy,
ReplyDeleteChildren with a dying loved one do have to face the difficult reality that because we live means we die. As parents we want to shield them from the sorrow of it, but we can't. When I became stage IV, I felt I had to let my children know as much about my disease as I could teach them while also preparing them for my future death. I thought the more prepared they were/are, the better off they would be. I hope I did the right thing. In the end, I believe it has made the subject of death--theirs, mine, anyone's--easier to talk about.
I agree, there is nothing sadder than a parent dying who has very young children. The children are too young to grasp what is happening, and the parent dies in such sadness for all the memories lost to them--awful.
And, yes!! Many more years of parenting will make me one happy mom.