After Treatment Ends, Dealing with Unexpected Challenges

When I came home from the hospital after having my first child through Caesarean section, my mother had set her usual beautiful table to celebrate. I burst into tears and ran upstairs to my room. I had a beautiful baby boy. Why was I so sad? It seemed ungrateful. I didn’t even know if I could eat the food Mom had prepared. (I did, on a stack table in my room.) That was back in 1985, before much talk about postpartum depression, or depression after childbirth, which is what I seemed to have.

Why was I sad after treatment?

Jump ahead to 2003. I recognized some of the same feelings when I came home from the hospital after my first stem cell transplant. I had a beautiful new baby – my new immune system – so why was I sad? Was I doing something wrong? I missed the comfort of knowing medical staff were on hand. I even missed the commotion of the hospital. Where had everyone gone? I knew I could phone, but that was a step removed from pressing a call button.

Luckily, my social worker had suggested some books to read. One especially helpful book was After Cancer: A Guide to Your New Life,. The author, Wendy S. Harpham, M.D., is an internist and lymphoma survivor who described many of the same feelings I was having. She wrote that when treatment ended, “I was more anxious and less happy than before I got sick.

I felt validated reading this book

Like me, she desperately wanted her old life back.

Having exercised her entire life (like me), she tried to speed walk, but the more she did, the more her leg and back hurt, she wrote. Her appetite was poor. Eating was a chore. She wondered if she would ever enjoy eating again.

“Expecting to feel awful with chemo made the discomforts more bearable. Expecting to feel good when it was over made relatively minor discomforts intolerable,” she wrote.

Same here!

Harpham was diagnosed in November 1990 with non-Hodgkin lymphoma. Her bio states: “After many courses of treatment, including investigational drugs received in three clinical trials, Dr. Harpham’s lymphoma has remained in remission.”

Recurrence worries

Her appetite and strength returned, but for a while, when problems popped up, she thought of recurrence.

Same here! 

She realized she had work to do on that front. “How I coped after cancer was more important than how I coped during cancer,” she wrote. Reading this helped me formulate my goals. I had to resist the urge to jump back into everything – coffee with friends, long dog walks, kid activities, shopping... 

I remember my dad saying, when my sister and I rough-housed with our cousins, "Somebody's going to end up crying." You could say the same for me if I tried to do to much. That somebody, of course, would be me.

Update from the author

I emailed Harpham recently to see how she was doing (very well) and ask if any of her advice has changed in the 20 years since the book's publication.

“When I skim the ‘After Cancer’ book, I see that my thinking has not really changed,” she said. She has managed to practice what she preaches, which is the importance of cultivating a healthy outlook.

“As a patient, I've had the luxury of years to practice and make almost second nature a life-enhancing outlook and helpful mantras,” she said in an email.

“Things are much better now than they were in 1991 when I finished my first course of chemo and everyone expected me to be back to normal,” she said. “But I do think people expect to feel a long period of elation and relief, and they are blindsided (still, today) by the unpleasant emotions.”

By the time of my fourth stem cell transplant, in 2009, I had the experience of three previous transplants to guide me. But it took a few mishaps and missteps to settle down each time. I pushed myself too hard. I tripped and fell. I too, wondered if I would ever want to eat again. I was so anxious about eating that my doctors said to take a little Ativan before meals. Guess what? I eventually ate again.

It took a while to shed the fear that danger lurked everywhere.

Not everything (even skunk spray) causes a relapse

I wasn’t even home for a week when our golden retriever, Misty, got sprayed by a skunk. The stench was so strong that I felt like I was breathing in poison gas. She ran frantically around the house. My three frantic kids contributed to the ruckus.

I called the nurses’ station on my last hospital floor.

One of my favorite nurses picked up. He had always called me Nervous Nellie. When something concerned me, he always said, “They’ll figure it out.” I asked if the smell could make me relapse. He reassured me that it could not. I still remember how kind he was when he could have laughed instead.

Like Harpham wrote, adjusting to life after cancer would take work.

A little over 20 years after my diagnosis, I'm still working on it.