REMISSION

Carnegie Hall: On stage, June 2, 2018

“Kyrie eleison, eleison.”

Whereas most major classical works begin with orchestral instruments, the opening notes of Haydn’s Missa Cellensis in C, the Mariazeller Mass, are sung by the chorus. This is a challenge for singers, who get no customary clues from the orchestra, no pitch, no tempo, no dynamics.

We Made It!

The conductor lifted his baton for attention, captured our eyes, and gave the downbeat. We hit it! “Kyrie eleison, eleison.”

Carnegie Hall: said to have the best acoustics of any performance hall in the United States, one of the most prestigious venues in the world. The place, rumor says, where the great violinist Jascha Heifetz once responded to a pedestrian who asked how to get to Carnegie Hall, “Practice.” Where the best aspire to perform, and, on this day, me.

Backstage, Carnegie Hall. Ready to perform.

Our chorus of almost a hundred singers, ten of us from the Downers Grove Choral Society, a group I have sung with for about ten years, filed onto the stage in our black formal dresses and tuxedos. I stood near the beginning of the second row. I looked out into the audience, found the first row, second tier, to the left of center, where I knew my husband, Chris, and my son, Bob, were sitting. They waved; I smiled and nodded. And then we hit it. “Kyrie eleison, eleison.”

It had not been easy. While practicing, and then rehearsing, the 45-minute piece, I had to take frequent breaks to moisten my mouth because I still have very little saliva. This was possible while at home and during rehearsals, where momentary breaks normally occur. But on stage, the only breaks are for orchestral and solo interludes, which were sparse and short in this choral work. I couldn’t sip from a bottle on stage of course. “I can do this,” I told myself. I had to trust that my voice would hold out, and except for a few ten-second places where I just moved my mouth and nothing came out, I kept up with the singers. I need not have worried.

What I had been through with my cancer made the experience much more precious.

You haven’t heard from me for a while, and the Carnegie Hall program was on June 2. I hope that didn’t send a false message that all was not well. On the contrary, my PET scan in May did not show any remaining (or new) cancer. My doctors were all smiles, giving me the best news they could. I smiled too, happy of course, and relieved, but I can’t say I cried with joy or felt any really strong emotion. Much as I wanted to end my blog about cancer treatment on a joyful note—“Yay, world! I’m cured!”—it would not have been how I really felt.

Almost since my cancer treatment began I’ve been dreaming of the day, and forming sentences in my mind, when I could tell the world I was in remission, or cancer-free. I would call all my family and friends, send out a blog post, find a happy picture and put it on Facebook. When the time came, and the good news, I only told close family. I found I had no words. I didn’t know what to say, how to say it, who to say it to. So I did nothing at first.

Maybe it’s because, just as I was unwilling to admit from the beginning that I had cancer, I am now unwilling to admit I no longer have cancer. Maybe my subconscious doesn’t want to say the words, in case it turns out to be wrong. It seems too private, and, truth be told, a bit scary.

My life is returning to some semblance of normality, but a new normality, I’m realizing. It is becoming clear that some of the effects of my cancer and its treatment may always be with me, and some new ones may even crop up in years to come.

I’m as guilty as the next guy in thinking, when I meet someone who I know is in cancer remission, “Sorry you had this happen, but you’re well and it’s over, right?” It’s not right. Those fortunate enough to be in remission will have periodic check-ups, suffer continued (and even new) side effects, have burdensome daily health routines, and perhaps medications that also may have their own side effects. They will always worry about the cancer coming back. After five years free of cancer, they will be pronounced “cured,” but that just lets them back off a bit, since the threat of cancer will always be there. True, the threat of cancer is there for people who have not had cancer too. The difference is that if you haven’t had cancer you don’t really know what it is you are dreading.

It’s more than four months since I finished therapy. I try to stay positive, but sometimes I get discouraged. All my life when I’ve gotten sick, I eventually heal and life gets back to normal. I’m not yet ready to accept that some of my side effects may be permanent. I wish I could just flip a switch and life would be like it was before.

I wish I could enjoy eating again. I can eat most foods now, but eating isn’t yet a pleasurable experience. I’m gradually tasting more. Every single time I think about eating I expect the taste to be what I remembered. Then I put the food in my mouth, and now and then the taste is close, but usually it’s unreliable and lasts for only a few bites, and then the customary bitter, rancid taste fills my mouth again. It’s disappointing. Every time. Some foods I still can’t eat at all, like spicy or acidic foods such as pizza or pineapple. It takes much longer for me to eat and I need about a pint of water to be able to swallow each meal due to dryness from impaired salivary glands. I still eat oatmeal just about every morning.

You may remember that I was looking forward to a big mac and a glass of wine. I can take some sips of wine, but not a whole glass yet. I can eat hamburgers with limited condiments if they aren’t too thick. The muscles in my jaw sustained some radiation impairment that limits how far I can open my mouth, but chewing is fine. Food portions are approaching normal, and I’ve stopped losing weight. Swallowing is okay, but sometimes liquids trickle down my throat and make me cough. My throat is still irritated, but less painful and my mouth is no longer sensitive. My tongue is still discolored and feels fuzzy, a consequence of dry mouth.

Recently, three months after my last radiation, I developed lymphedema (fluid pooling in my neck) that may be permanent. I do about twenty minutes of massage twice a day for this. I wear an elastic support around my neck, jaw, and head for four hours a day that I would never wear in public. If I don’t do this I feel pressure in my throat and I look like I have a turkey wattle. I have few if any lymph nodes in my neck after radiation, and they will not return. I’m dependent on remaining lymph vessels, which don’t move fluid from the neck as efficiently. I have to do neck massage to keep the accumulation from getting too large or hardening and becoming permanent. “Late effects,” they’re called, the lymphedema and jaw muscle problems. Gobble, gobble.

I continue to do speech therapy for my jaw muscles and swallowing function and I walk daily. Brushing teeth and scraping tongue, rinsing, fluoride treatments, all done regularly and all take time. I have a lifelong risk of cavities and bone loss in my teeth and jaw. Although time consuming (about two hours daily), it takes much less time than the full days of medical activities months ago. I now have about eighty percent of my day back for other things.

Also on the plus side, my skin has healed, except that my neck is sensitive to touch due to nerve damage. I have to avoid exposing my skin to the sun, probably for life. I rarely have nausea or pain anymore, except for mild throat irritation (Two or three on the pain scale. I’ve gotten used to that question.)

My energy is almost all back. I’ve been able to resume most of my activities, board meetings, volunteer activities. I rarely nap, I get up and retire at a reasonable hour, and I fall asleep in front of the TV like I did pre-cancer, but without crashing! I feel reasonable when I wake up. I have not been able to return to speaking engagements yet due to dryness that prevents me from talking for more than ten minutes nonstop, but I can do exhibit, sales, books clubs, etc. and have started to schedule these again. My pace is slower than before, but when I’m tired I stop. I’m picky about what I commit to, and I’m trying not to get pressured into doing too much too soon—although that is against my nature!

I’ve picked up where I left off writing my next murder mystery (Cora and friends tangle with the Mob this time, set in the Cook County Forest Preserves once again) and I’m looking forward to finishing it this year.

Recently Chris and I spent a few days visiting family and during the trip I indulged in what I call “shameless shopping.” True, I had needed a new wardrobe after dropping three sizes and realizing I no longer had anything that wouldn’t fallq off me or look ridiculous. But I’d already replaced much of my wardrobe and intended to only get a few odds and ends to fill it out. We hit sales though, and I’m a sucker for sales. I won’t embarrass myself by telling you how much I bought; it was great stuff but way more than I needed. I felt at once disgusted by the extravagance and rewarded because of my recent struggles. Now I face the happy dilemma of shopping my own closet for ways to mix and match and pulling out more items for Goodwill.

My next blog I will be returning to posts about local history. This is my last regular post about my treatment for head and neck cancer, although I may throw in an update every few months to let you all know how I’m doing. I also hope to publish a memoir about my cancer experience, with a tentative target of 2019.

Meanwhile, here’s a shout out from the woman who survived tongue cancer and ended up singing in Carnegie Hall!

The Author, Dress Rehearsal, Carnegie Hall, June 2, 2018