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Posted on Fri, Dec 10, 2010 : 8 a.m.

The Roller Coaster Chronicles: Post-treatment qualms

By Betsy de Parry

betsy CT scan.jpg

This CT image confirms no sign of cancer in my body. It would take some time to get it out of my mind.

University of Michigan

Readers: The events in these installments, the condensed version of my book, occurred in 2002. To catch up from the beginning, these chronicles start here.

I'd spent endless hours fantasizing how life would be after treatment ended, and I was ecstatic that it had, but what was I supposed to do now? For months, day-to-day life had been a whirlwind of tests, appointments, treatments and side effects. There was always someone to tell me where to go, what to do, and when to do it. Robotically, I had followed every instruction and concentrated on getting well.

Then, when Dr. Kaminski said that my lymph nodes were within normal range six weeks after treatment, I found myself wondering what I was supposed to do for the next six weeks during which there would be no tests or appointments. Not that I wasn't glad, but how could I possibly function alone for six whole weeks?

Any hint of pain, any twitch sent me into a tizzy of fear. If I broke a fingernail, lymphoma was surely back. OK, I wasn't that neurotic, but I came close. I still feared that going into crowds could expose me to germs and send me straight back to Hotel Hell. And the absence of weekly blood draws meant that I had no idea if my blood was scheming against me. If my medical team wasn't watching out for me, who was? As long as I was being treated, people were working hard to save my life, and I was safe from harm. Now what?

The immediate physical threat had receded, but cancer seemed to have won after all. It had usurped my momentum, stolen my passion, and left me in an emotional vacuum from which I knew not how to escape. How ironic, I thought, that miraculous drugs could rid my body of something so evil as cancer and still leave me feeling so vulnerable. So timid. So empty.

And where was my old self — the one that had consisted of many pieces scattered far and wide to make me whole? When cancer had called, I had quickly gathered all my pieces to focus on ridding my body of it, a goal which was now reached, at least temporarily. Suddenly, all the things that I had ignored during my illness were back and important again, but how could I disassemble my "single purpose" self and return to the multiple roles I had once played?

And how could I possibly re-establish myself as dependable? I knew how much Alex had shouldered during my illness, and I genuinely wanted to remove the extra load from him, but I couldn't muster any interest in work. Ever so gently, he tried to coax me back by including me in meetings or asking my opinion on a variety of things. I participated, but only half-heartedly, and only because I felt guilty that Alex had carried my share of the load for so many months. He was incredibly patient. Had I been in his shoes, I might have screamed at me, "Listen, lady, you've been sick. It's over. Get a grip." I repeated those words to myself over and over, but it didn't help.

Somehow I had to put all this into perspective. I told myself that I was still the same person I once was. That I was the sum of all my parts and that cancer was only a small part. But cancer left more scars and doubts in its wake than any preceding experience. And unlike a previous divorce or broken leg which don't predict a future divorce or broken leg, cancer predicts a future that holds frequent tests, potentially unimaginable medical procedures and the constant specter of death. How was I to learn to live with uncertainty as my constant companion?

And where were all these qualms coming from? During all the months of treatment, I had just assumed that life would return to normal once it ended. It had never occurred to me that the emotional blows would leave deep wounds that required time to heal, much less that my body would heal faster than they would.

Next Tuesday, Dec. 14: The long and winding road to recovery

Betsy de Parry is the author of The Roller Coaster Chronicles and host of a series of webcasts about cancer. Find her on Facebook or Twitter or email her.