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.
