Limbo

I woke up this morning to find my underwear on the kitchen table, right next to the bottle of tequila.


The Jose Cuervo was unopened; the party’s not until the weekend, when my college girlfriends come to visit. But after a morning visit to the doctor and a couple of afternoon errands, I was so wiped out when I got home yesterday, I apparently couldn’t even make it to the bedroom. I dropped the bottles on the counter, peeled off half my clothes right there in the kitchen (because I’m hot, and then I’m cold, and then I’m hot, and then I’m cold) and collapsed onto my couch for four straight hours of Law and Order. It is possible, I have recently discovered, to watch Law and Order almost incessantly, day or night.

This fatigue thing was first on my list of things to ask Dr. R about at our appointment yesterday, along with the flu-like aches, weird joint pain in my hands and extreme temperature swings. I had had a little burst of energy after my final radiation treatment, feeling great while I was sailing on Cape Cod for the weekend, and even during my first few days back in Philly, but after five days, I crashed.

I also needed to know what my follow-up care would be. How often will I have to get PET/CT scans and blood work in the years ahead?

To my surprise, Dr. R’s first concern was something completely different.

“Your tests are good, your blood work looks great. What I really want you to be on the lookout for now,” he said, “are signs of depression. Everybody wants to celebrate because treatments are over, and you look good so they think you feel good, too. But it usually takes three to six months to really start feeling better. Some people say it took a year for them to feel ‘normal’… whatever the ‘new normal’ is.”

Dr. R handed me tissues before I even realized my eyes were welling up.

“Everybody keeps asking me what my plans are now,” I said. “Jesus, I’m exhausted.”

I have discussed this with a few friends in recent weeks. One suggested I might be experiencing a little bit of survivor’s guilt. God knows I have seen countless people in the last eight months much worse off than I am. And of course I am grateful that my prognosis, my care, and my support were the best imaginable. And yes, I know that soon enough, I’ll be back to work, and things will be back on track. Relentless optimism takes a bit of a toll along with the treatment.

My first instinct is that the survivor/war analogy is a little extreme… but then I remember that all the cancer books use war analogies. Your body is “invaded” by “hostile” cancer cells. Chemotherapy and radiation are your “armies” designed to “attack” the invaders. During the fight, lots of good guys get killed. Whole platoons of healthy cells are victims of friendly fire.

“I do feel a little bit like a war survivor,” I confided to one friend. “The war is over! I lived! But then I look around at all the rubble. My world is hardly in ruins, but there’s a lot of rebuilding to do. I lost a year of my life. And I’m fucking tired.”

In some ways, this period of time coming up feels the most difficult and complicated. I wasn’t kidding when I told people I didn’t feel brave going through treatment. What’s the big deal? You just show up when they tell you. Once you make a few decisions about your care, the rest is out of your control. But now that it’s over, now what? This is the hard part. It’s not even interesting to write about. At least hell is perversely interesting, even sometimes funny. Limbo is just banal.

“You and your body have been through a lot,” Dr. R reminded me. “A lot of people report symptoms of post-traumatic stress syndrome.”

I see Dr. R again in three months. I’ll get more blood work and another scan then. I’ll see Dr. R every three months for… a long time, I think. Any recurrence of Hodgkin’s is most likely in the first few years. After that, we start looking for secondary cancers… but we won’t talk about that right now. There are too many other things to think about first. But not today.