Survivor's Guilt

It’s been five months since I had my last chemo treatment at the end of December 2016. Five months—not even half a year. Five months, the same length of time as chemo. Five months and already I’m starting to forget what it was like to be on chemo: How I felt, physically and emotionally. What I thought about. How I passed the time. The number of new bottles that lined my medicine cabinet shelves. The unpredictable cycle of bad days and better days and even a few good days. Such a pivotal experience that I thought was seared into my memory forever, and yet already it’s starting to fade, whether through an unconscious desire to put it behind me or simple brain atrophy, I don’t know.

Maybe it’s not starting to fade so much as it’s moving into the background. Still accessible for recall in the archives in minute detail, but no longer on the display cases at the front. If I really think about it, I do still remember what it was like and how I felt and how I yearned for it all to be over so I could go back to normal life. But the farther away I get from that last chemo and the more recovered I feel, the less present those memories are in my daily motions.

When I started writing about my cancer experiences, I intended to go more or less chronologically, with some philosophical pieces thrown in at appropriate intervals. Yet here I am skipping to the end, to the part where I tell you I finished chemo and I’m okay, before I’ve even gotten to the half-way point of the story. I wanted to wait to write this post but sometimes chapters demand to be written out of sequence. This one has been practically bursting out of my pen and keyboard for at least a week now. It simply will not be contained, will not wait until later. Who am I to deny these words their existence simply because I didn’t plan to write them yet?

Yes, friends, I’m okay. I had a scan at the end of January that did not detect any traces of cancer in my lymph nodes, which, combined with normal blood counts, qualifies as a clean bill of health. It qualifies as remission. I am in remission.

I have been cautiously celebrating this news and practicing telling people since I got the result. It feels strange to say it—I am in remission, I am cancer-free—as strange as it did last year to say that I had cancer. One doesn’t practice these speeches in front of the mirror, after all. It still jars me somewhat to speak it aloud, the part about remission, particularly since I know the cancer could always come back. I don’t like the word cure. It’s too cheerful, too definitive. Even with my crazy high odds of long-term survival, the cancer could still come back.

Getting those scan results, hearing the word “remission,” gradually getting back to normal life—all are bittersweet when I look around at those I know and love who are still dealing with this cancer nonsense or have lost their lives to it.

Still Dealing with This Cancer Nonsense

There’s Paulette, an older woman from church who discovered a cancerous brain tumor in 2015. Chemo and radiation seemed to take care of it but six months later or less the cancer came back. Treatment did nothing the second time around save to slightly delay its progress. I sat with her on her sofa one evening last summer, when I knew I might have cancer but had not yet gotten a diagnosis. I had brought her dinner and was waiting for the rain to let up before dashing back out to my car in the driveway. She told me the story of her diagnosis and spoke grimly of her current treatment and prognosis. She was hopeful but matter-of-fact. She wanted to be sure her son, who lived with her, would be taken care of financially if and when she died.

Paulette passed away last fall. She was a stalwart single mother to three grown children, a beloved French teacher at the State Department, and a kind and caring soul. I went to her funeral with a head scarf on my bald head two days after I’d had chemo.

Nine months later, she’s gone but I’m in remission.

There’s my good friend J1, who has been dealing with an acute form of leukemia off and on for the past six years or so. She’s a brilliant historian, a quilter, and a stellar friend with more determination than anyone I know. She is a medical miracle, kept alive through the wonders of modern medicine and sheer force of will. She just had her third stem cell transplant—the fancy modern equivalent of a bone marrow transplant. Since being diagnosed, she’s undergone numerous treatment cycles followed by periods of remission, only to face down the cancer again a few months or years later. Sometime fairly early on, she decided to give cancer the finger and just get on with her life regardless. Oh how I try to emulate her, in good times and bad!

She’s dealing with the same cancer again, but I’m in remission.

Then there’s my friend J2, who was diagnosed with breast cancer a couple of years ago. She has three young children and is a talented architect with a generous nature. After months of chemo and radiation she was pronounced cancer-free. She had been in remission for about a year and was just starting to contemplate going back to work part-time when she noticed strange pains in her legs and back. She finally went to see a doctor about it, not even remotely thinking of her former cancer. Turns out, the cancer had returned and metastasized, spreading to her bones, which was the source of the pain. Suddenly her oncologist was talking simply about keeping the cancer in-check, not a cure.

We commiserated about cancer and treatment and all that comes with it last fall, when we spent some time together because we both needed company. She was discouraged and didn’t know what the future held. After months of radiation and other treatment, J2’s cancer has not budged. Her doctors told her husband last week that she likely has only a few weeks to live.

My heart breaks for her and her family. It’s not fair that she’s dying and I’m in remission.

***UPDATE June 2, 2017: J2 passed away this morning. My heart is breaking for her and her family, for all they have endured and all the rotten enduring that lies before them. Grief seems too mild a word to describe what they must be experiencing right now with this loss. (End update)***

There’s my brother Jeremy, of course. More than 10 years ago now, he had melanoma that would not be contained. He died in a hospital bed in my mom’s living room, emaciated and tumor-ridden, a few months shy of his 31^st birthday. He left behind his wife and two very small children, my niece and nephew, who have become impressive young adults that I love to spend time with.

He got one of the hardest cancers to treat ever while I finished treatment in five months and am now in remission.

Oh great, now I’m going to cry thinking about all these guys.  

Why Me?

I said in my first entry about my cancer diagnosis that I never asked, “Why me?” Now that I’m in remission, with my ridiculously good odds for long-term survival, watching my friends fight for their lives and thinking about those who have already lost that fight to this insidious disease, I am constantly asking, “Why me?” Why did I have the easy cancer with the relatively quick and easy treatment? Why am I in remission when these friends and so many like them are not? Why am I surviving and getting back to normal life while they still have to deal with this cancer malarky? Is there a larger cosmic force at play or is it just dumb luck?

To be honest, I don’t think there is a “why” in all of this, which means there aren’t any answers to those questions. If there were a “why,” discovering it wouldn’t change the outcome for me or them. It wouldn’t bring Paulette and Jeremy back from the dead. It wouldn’t make J1 and J2’s chemo and radiation and other treatments any more effective. It wouldn’t swap out my remission for their cancer or vice versa.

Maybe it’s that very lack of sense or effect that’s at the root of the “why me” questions. It’s our helplessness in the face of an illogical disease and an incredible but still imperfect medical science that makes us question the uneven outcomes. It’s the seemingly arbitrary nature of this whole ride that frustrates and perplexes and infuriates.

Sometimes there is no why. Sometimes stuff just happens. I know this, but it’s still hard to accept life’s disparities, even when that disparity means I’m one of the survivors.

Hair, Part 2

               “Don’t worry, your hair will grow back.”

              “Think of all the fun you can have with wigs! You can be a brunette one day and a red-head the next!”

              “Think of how much fun it will be to accessorize with head scarves!”

              “Ooo, maybe when it grows back it will be really thick.”

              “Maybe it will grow in all blonde, no more gray hairs. Wouldn’t that be great?”

              “I used to wear wigs when I was pregnant just to try having long hair. They looked so realistic, people who met me for the first time didn’t know it wasn’t my real hair.”

              “Sometimes I feel like just shaving my head because I get so tired of doing my hair.”

These are all things that well-meaning souls said to me both before and after I lost my hair to chemo, stated with varying levels of tact. The comments were well-intentioned, an effort to find a positive aspect to this depressing situation. The people who made these remarks meant for them to help lighten my hair-loss melancholy.  

In spite of motivations, these comments did not help.

In fact, they did quite the opposite. Rather than showing support, which was their aim, they trivialized my experience and how difficult it was to lose my hair. By trying to put a positive spin on my hair loss, these comments instead seemed to make light of it, as if it were no worse than giving up a favorite pair of jeans that no longer fit.

Take note, reader: These are all things you should NOT say to someone who is losing his or her hair to chemo.

It was bad enough that the makers of these comments were bringing up my hair loss and drawing attention to it in the first place, requiring me to engage in at least minimal conversation on the topic, which I did not want to do. Now on top of that they were actually being cheerful and making it sound like this hair loss thing could be fun or even have some benefit or that it ultimately wasn’t a big deal.

Let me tell you, it was a very big deal and I felt it keenly every day.

Playing with wigs and scarves is only fun when you’re doing it by choice, because you want to change your look or project a different persona or evade the law. Shopping for scarves is not fun when you’re looking for something to cover your now-bald head after your hair has just been buzzed off in a cancer patient ritual. I never even considered getting a wig. The very idea of a wig made me crinkle up my nose in aversion. They just seemed so itchy and hot and uncomfortable—definitely not fun.

For the cancer survivor whose hair has grown back, chemo-induced hair loss might seem less traumatic in retrospect. I wouldn’t know. I do know that at the time, it was very traumatic and no manner of potential bright spots, like those listed above, could console me.

Public Appearances

The Monday after I shaved my head, I went to work. My team was scheduled to have a big all-hands meeting that morning at 9 a.m. The whole office of 30+ people would be in one conference room for an hour discussing the latest developments and upcoming events. At the end of each meeting, we went around the room to give everyone a chance to speak if they had information pertinent to the whole group. This meant that for at least 30 seconds, all eyes would be on me and my headscarf.

I couldn’t face it.

I arrived at work about 15 minutes after the meeting had started and did not join in. Most of my teammates didn’t even know I had cancer and I wasn’t about to announce it—explicitly or otherwise—at an all-hands meeting.

I had already been sleeping a little longer and arriving at the office a little later than normal since starting chemo (on the days when I made it into work at all, that is), so on this Monday morning, I simply did that just a little bit more. Selecting an outfit posed a bit of a problem since I now had to coordinate what I wore with a very limited stock of head scarves (the one I’d bought plus those that Michelle had kindly given me at the salon). Accessorizing has never been a pleasurable past time for me and this head-scarf-outfit-coordinating-thing compounded that displeasure by at least a factor of 10. Thus, I had no small amount of angst as I was getting ready that morning which was no doubt heightened by the fact that I was emotional about losing my hair, didn’t feel 100% physically thanks to the chemo, and had zero confidence in my appearance in any head covering.  

I hid in my shared office as much as I could that day. At one point, one of the managers came in to give me a tasking. When he first walked in and saw me (and my new look), I noticed a very small start of surprise flicker across his face. It was just a microsecond, a hiccup, and then it was gone and we interacted as normal. Although I felt like I got stares in the hallways and cafeteria, my immediate coworkers didn’t miss a beat. They acted like I had been wearing a head scarf every day for months and it was nothing unusual. Bless them.

What to Say to Someone Going through Chemo-Induced Hair Loss

              “I’m so sorry.”

              “That sucks.”

              “Cancer sucks!” or “Stupid cancer!” (or both)

              “Do you want to talk about it?” (The answer will probably be no.)

              “How are you doing?”

Or don’t say anything about the hair loss at all. Just interact as if they look the same way they’ve always looked.  They will probably be very grateful to you for it.