In the Hospital

A few days after my second chemo treatment, I was admitted to the hospital. I figured I would have to go to the hospital at some point during my cancer treatment but I didn’t think it would be so soon after chemo started.

Why I went to the emergency room and how I got admitted is a bit convoluted, related to my depressed immune system and a reaction to a drug I was taking—ironically, it was an antibiotic that my doctor prescribed to help protect me from infection while my immune system was low as a result of the chemo. I had temporarily discontinued this antibiotic for about a week on the advice of the nurse practitioner, who thought I might be allergic to it based on past symptoms. But my oncologist wanted me to start taking it again so I would have some protection and the Monday after my second chemo, I dutifully did.

I took it in the late afternoon and within 45 minutes, I felt shortness of breath and tingling in my lips. Over the next 90 minutes, I took three Benadryl in an attempt to get relief, all to no avail. The Benadryl made me sleepy but my legs were so restless that I couldn’t stop pacing the room. I tried to lie down but they protested painfully. The only relief was to keep them moving. And moving. Around and around I walked, from the bedroom to the living room and back. I couldn’t concentrate on anything but the too-slow movement of the clock and my impulsive leg muscles.

After about two hours, I called the on-call oncologist (again) and told him what was going on. He didn’t think I was in any danger but said I was evidently very uncomfortable and should go to the emergency room to get some steroids to relieve the restlessness in my legs and any other symptoms of reacting to the antibiotic. He promised to call ahead to let them know I was coming.

Dorian, a friend from church, drove me to the hospital. It was around 8:30pm and the summer sun was setting as we pulled up. While she parked the car, I checked in and clumsily explained why I’d come. It was a strange feeling to note on the intake form that I was a chemo patient.

The waiting room was packed. For some reason, it hadn’t occurred to me that other people would be there waiting and that I, too, would have to wait. My legs had settled down substantially during the car ride but still felt spasmy and achy. I took a seat and Dorian joined me a few minutes later.

After a bit, I was called back to talk to a tech in a curtained-off area. I explained what was going on as best I could, interrupted by the onset of severe full-body chills. They got me a warmed blanket, put me in a wheel chair, and pushed me to into one of the ER bays.

Contrary to the urgency implied by the word Emergency in Emergency Room, everything moved very slowly in the ER. I didn’t really have a strong sense of how much time had passed, so focused was I on the minutiae of my physical condition and the desire for relief.

Hours passed. My friend Michelle came to relieve Dorian then my sister Holly came to relieve Michelle. I shivered under a pile of blankets, IVs in my hand and elbow, sticky heart monitor nodes attached to my chest, exhausted from the Benadryl but also somehow very wired. It was difficult and painful to move, even to scratch my nose or adjust a blanket. My fever spiked and my white blood cell counts plummeted to the point of being neutropenic—meaning I had so few white blood cells that I essentially didn’t have an immune system. No white blood cells + high fever raised the alarm that I had or was very susceptible to infection, and I had to be admitted.

My heart sank to hear that I would have to be admitted to the hospital. Couldn’t we just let the Tylenol take care of the fever while I rested at home? I’d had high fevers and low white counts previously and hadn’t needed to be admitted. Then again, I’d never called the doctor to tell them how high my fevers had been. In any case, the doctors weren’t taking any chances.

More waiting ensued. By the time they found and prepared a room and I was admitted, it was somewhere north of 2:30am. They had me drink a potassium supplement disguised as a foul-tasting punch. It seems low potassium was the likely cause of my leg spasms earlier.

I was exhausted and upset at being admitted to the hospital, as well as being very uncomfortable with all the wires and IVs attached to my body, and did not want to be alone. Holly kindly agreed to stay with me, sleeping on the lumpy pull-out chair in the room, although I’m sure she would much rather have gone home to be in her own comfortable bed. She had to be up and home fairly early to get her kids off to school and I don’t think either of us slept very well for the few hours that remained until morning.

I was in the hospital for three days. I felt very low. The uncertainty of when I’d be allowed to go home, the repeated pricking and poking to take my blood for testing, the constant supply of three different antibiotics coursing through my veins that made me feel funny (on top of post-chemo malaise), the itching of my newly-bald head, the awkwardness of the hospital gown and not being able to take a shower, the fact that I was there because I had dreaded cancer, the lackluster hospital food—it was all a classic recipe for a pity party. And oh boy, did I throw myself a massive pity party during those three days.

There was also the boredom. I didn’t have the attention span to read or write in my journal. I watched hours of Olympics on TV, mostly swimming. Do you know how boring it is to watch people swim back and forth in a pool for hours in a row? I put it on mute most of the time, just something to have on in the background to make me feel less alone. The track and field events were better. Short bursts of raw athleticism, the bravado of Hussain Bolt, the muscular figures of both the men and women in peak condition, pushing their bodies to go ever faster.

Each day, I was visited by three doctors: the on-duty physician from my oncology practice; the “hospitalist,” who was responsible for overall patient care on that floor; and an infectious disease specialist. The oncologist and the hospitalist both shook my hand when they came to visit and stood close to the bed. By contrast, the infectious disease doctor never shook my hand and stood a few feet away from the foot of the bed, apparently to keep me well clear of any nasty germs he might be harboring.   

There were some bright spots in the midst of the pity party, though. All the nurses were very caring. My cousin Quinton came and worked from my hospital room whenever he could. It was nice to have company even if we didn’t talk a lot. He was a friendly and familiar human presence in the room while I dozed or watched TV or just stared off into space. My sister came to visit every day and even brought me food once or twice (which, sadly, didn’t taste any better than the hospital food thanks to the chemo). A friend from work came by for a brief visit and so did Michelle. On what would be my last full day there, my sister brought her kids to see me, though I couldn’t hug them or get too close lest I should pick up any of their germs. We gave each other “air hugs” and they brought me homemade get-well cards that went miles towards lifting my spirits.

And perhaps the biggest bright spot of all, my aunt Bev, Quinton’s mom, surprised me by flying in from Chicago to take care of me. I later learned that my sister had called her and asked if she could come for a few days and she said yes! She was on summer break from her job as an elementary school teacher so wouldn’t even have to miss work. She was on a flight the very next morning. When my sister told me Bev was coming, I was overwhelmed by her kindness in dropping everything to come to my aid, and by the knowledge of having constant company and a real adult to take care of me, that I burst into tears.

The day Bev arrived ended up being the day I was discharged from the hospital. My white cell counts were still lower than the doctors would have liked but they’d been steadily rising and I showed no other signs of infection. They gave me more prescription antibiotics to take when I got home and the hospitalist discharged me in the afternoon. I’ve never been so happy to put on days-old clothes and walk out into a hot, humid Virginia summer day.

Bev stayed for a week and was a tremendous help and comfort. She drove me to follow-up doctor appointments, made food when I felt like eating, took me to and stayed with me during my next chemo appointment, and just generally kept me company. A true godsend at that low point in my chemo experience.

Thank you, Holly, for calling Bev and being an awesome sister. Thank you, Bev, for coming to my aid and being an awesome aunt.  

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.