Cancer in the Home: Recurring Hope, Part Two Interview with Dr. Wendy Harpham

Erica Heilman
In 1990, Dr. Wendy Harpham was diagnosed with non-Hodgkin?s lymphoma, a slow-growing form of cancer with no known cure. In the years that followed, she raised three children and underwent numerous courses of treatment for her cancer. She also began writing books for cancer patients, drawing both on her experience as a physician, and as a patient.

In her book, When a Parent Has Cancer. A Guide to Caring for Your Children, and its companion children?s book, Becky and the Worry Cup, Dr. Harpham writes about the challenges and unexpected gifts of living with cancer in the family. In the second part of this two-part series, she talks about coping with energy loss, cancer recurrence, and the role that hope played in her family.

Was it difficult to manage the loss of energy that came with your cancer treatment?
Dealing with my loss of energy was very hard and very emotional. It wasn?t just affecting me; it caused tremendous stress and affected the whole family. One thing that helped me was accepting that cancer-related fatigue is real and different than the fatigue that healthy people feel at the end of a long day. If I were in the bathroom throwing up, nobody would ask me to try harder not to throw up so I could be at the park with the children. It helped everyone when we realized and accepted that fatigue is just as real as something more measurable.


The second thing I had to accept is that my lack of stamina wasn?t my fault. I didn?t like it, I didn?t want it. But it was part of my cancer experience.

And finally, even though we didn?t have a choice about my energy limitation, we did have a choice about how we dealt with it. When I took a nap in the afternoon, instead of talking about how awful it was, we?d talk about how the nap helped me feel better. I was less irritable. Nicer! If I got the rest I needed, I could enjoy the time I had with my children more, and they could enjoy their time with me.

When they were younger and I was going through active treatment, I couldn?t do a lot of the things the other moms did. That?s just the way it was. It wasn?t because I didn?t want to or I didn?t care, but I couldn?t. And we always focused on what we had. We acknowledged what we had lost, but we focused on what we had. And we tried to work around it.

Over the course of years, you?ve had a number of recurrences of the lymphoma. How did your children respond to each recurrence?
They?ve had the experience of me going through treatment, getting sick, getting better, getting sick, getting better, etc. So they know that getting sick doesn?t necessarily mean I?m going to die.

And though they always trusted me to tell the truth, they didn?t always trust that things would be ok. I remember when I was leaving for California from Dallas to participate in a clinical trial after my second recurrence. My oldest child, then seven, stood at the door waving, and said, "It?s not going to work, mom."
I understood that she was angry about the recurrence, and she was angry I was leaving her. She was afraid to be hopeful, because she?d been hopeful when I?d had chemo, and she?d been hopeful when I had had radiation. Both times the cancer had come back. I recognized as a parent she was just letting me know where she was. The hard part was, as a sick patient, I needed to be hopeful. I kept telling myself, "This is good. She?s letting me know where she is so I can address her need." But as a patient, I also needed someone to help me through my fears and anxieties. I needed support for my needs, as well as guidance helping my daughter.

How important is it that children have somebody outside the family to talk with about what?s happening at home?
I think it?s very important, because there are things that can be said to someone else that children really can?t or don?t want to share with the ill parent or the well parent. Every time my cancer recurred, as soon as she got the news, my oldest daughter, without a word, would march out the door and go a couple of houses down to her best friend and her best friend?s mom. And that was where she needed to let it go. There are many reasons for that.

One is: She knew that my husband and I were distressed when my cancer recurred and she didn?t want to overburden us. Meaning, if she fell apart and cried, and it was easier for her to fall apart there. I was not privy to those conversations, but I suspect that she expressed her fear and her anger and her frustration, disappointment and all those other unpleasant emotions. But it was a safe place for her to do it. She knew that she could express herself at home, but sometimes kids can tell things to their friends that they can?t talk about at home.


Did your diagnosis impact how you relate to your children?
My fear-and it was a justified fear-that I would not survive to raise my children really crystallized for me my job as a mom. The main theme of When a Parent Has Cancer..., is, "The greatest gift we can give our children is not protection from the world but the confidence and tools to cope and grow with all that life has to offer."

Every little mundane thing became an opportunity to show them I love them, care about them and respect them. And, just as important to teach them something about the world, and to prepare them to be independent.

see a lot of parents who, when the child graduates elementary school, they go "Oh, they?re getting to be so big; I want my baby back." And during those years when I wasn?t sure how much time I had, my response was, "Yeah! She?s graduating; she?s this far with me still here. And, I?m getting to see it!"
Does living with the notion of an uncertain future ever go away?
I?ve had this unexpectedly gloriously long remission. My last treatment was in 1998 and we?re all hoping I?ll never have cancer again. We also know that every time I go for a checkup, I may come home with news that I need more treatment. My children know we?ll deal with this uncertainty. I don?t have to guarantee something I can?t guarantee. This has liberated me.

And the beautiful thing is this: life is uncertain. My children are happy and confident even though they know things are uncertain. It?s a wonderful way to live. You appreciate what you have now, because you know it?s uncertain. So the uncertainty doesn?t have to make you more fearful, anxious, and unable to appreciate today. It actually can help you seize the day.

What advice would you give parents going through a similar experience?
If I could offer just one piece of advice to parents in a similar situation, I would say, "Establish and maintain open lines of communication." The nice thing is, if you do, you?ll find it improves communication about all manner of things. Talking about drugs or sex, grades or college, or driving, politics-anything is easy, because we?ve talked openly for so long about difficult issues. Also remember: you can be trying your best and still do a terrible job some days. I?ve made tons of mistakes. Knowing what to do and doing it are two completely different things. There were many times that, because of my stress, fatigue, anxiety, just not feeling well, I was horrible with my children. I was impatient, unfair, I was horrible.


But, after I was horrible, and after I calmed down, I would apologize. They would forgive me, and we?d move on, together. Parents need to forgive themselves; they can teach their children the lesson of forgiveness. Now, when my children screw up, they have the courage to come up and say, "I?m sorry." because they know that nothing can diminish our love. What a liberating, wonderful way to live.

http://womens_health.healthology.com...nghope&spg=FLA