What’s Oncology?

This is a guest post by Sherry (she wishes to use only her first name).

Sherry and her mom

Sherry and her mom Bertie looking at a photo of Bertie and her grandparents when she was 8 years old. Photo taken by Sherry’s brother Rick.

Since January, I’ve been in Austin, taking care of my mom, more than I’ve been home in New York.

It turns out my mother has colon cancer. The good news is, the lesion is slow growing, not causing her pain at present, and not obstructing her bowel. However, it is causing anemia, and this symptom will be the direct cause of her death, probably sometime this spring. We tried the least invasive treatment possible, intravenous iron infusions, to no great effect. She’s 92 and frail, so there is nothing else that could help without triggering a slew of side effects that would cause greater harm, quite possibly far greater harm. 

Therefore the plan is to keep her comfortable. I have engaged hospice services; a team actually comes to her assisted living facility, which means she does not have to leave her home, thank goodness. She is fairly stable for now.

Paradoxically, the Alzheimer’s that has been apparent for about ten years has one silver lining, if you want to call it that: it spares her from concern over her other medical issues. We had a rather amazing series of exchanges in a clinic waiting room during the week of January 19.

Monday
My mom Bertie, my brother Rick and I all troop in and sit down. Rick and I had agreed beforehand to shield her from unnecessary worry. We intended to avoid mentioning cancer unless and until we had a definitive diagnosis. So Rick and I are all, “Well, the three of us just happen to be sitting here in this office.”  Then Mother looks up. There, on the opposite wall, emblazoned in metallic letters at least a foot high (this is Texas; everything is way oversized) are the words “TEXAS ONCOLOGY.” With a star. A lone star. Did I mention we are in Texas?

My mom goes, “What’s oncology?” Both her parents, her husband, and her first child were killed by cancer. She knows what oncology is. Furthermore, she was the first of her family to go to college, and graduated with a 4-year degree. In the depths of the Great Depression, I might add. She is one smart, capable lady.

Anyway, my poor brother, taken totally off guard, answers with a verbal smoke screen. In order to spare his dignity, it won’t be repeated here. He follows it up with, “Hey, let’s look at this cool magazine.” Bertie is satisfied for the moment. With the Alzheimer’s, moments are all she has. 

We wait. We meet the oncologist. Tests and treatments are scheduled.

Rick returns to his home and work in Arkansas.

Tuesday
Bertie and I are back in the office. Rather distracted, I sit us down in the same spot. We look up. Oops.

Wall: TEXAS ONCOLOGY (star).

Bertie: What’s oncology?

Sherry: It is the study of cancer in the body.

Bertie: Do I have cancer?

Sherry: I do not know

This was true at that particular point in time; we were waiting for the test; I am not about to start lying to my mother now. Help! what on earth do I say here?!?

Sherry: Would you want to know if you did?

Bertie: (considers for a moment) I don’t believe I would.

Sherry: OK.

More waiting. Tests and treatment follow.

Thursday
The diagnosis is communicated to me over the phone. I speak with Rick. 

Friday
Bertie and I are back for treatment #2. Somewhat more alert, and mindful of my mother’s Tuesday guidelines, I park us facing away from the offending wall. I congratulate myself. 

We wait.

After a few minutes, in walks another patient or family member/caregiver, a long TALL Texan, with a great big chest that would do a linebacker proud. There is a sweatshirt covering that enormous chest, emblazoned with, yes, TEXAS ONCOLOGY.

Bertie: What’s oncology?

Sherry: Hey, let’s look at this cool magazine.

And I’ve been steering the conversation ever since. Actually, she hasn’t even come close to asking about oncology since that day, even when we had to pass that noisy wall three more times during subsequent treatments.

Anyway, she still knows me, and really enjoys my company. We made a scrapbook, look at old family pictures, cackle over cute animal youtube videos on my teensy iPad mini, and sing old songs together COMPLETELY off key. Neither one of us can carry a tune, and neither one of us cares! What a pair.

Meanwhile, I wrangle assisted living services, hospice services, insurance, and forms requesting leave from my job. I wait for the oncologist, the gerontologist, and all and sundry. I watch Bertie like a hawk, and inspect the various caregivers. No one gets near her without my approval. Caregivers clean my mom, her clothes, and her place, and then I clean again. Is this what it’s like to have a child?

I shuttle back and forth between New York and Texas. My heart wants to be here with Bertie and I would just stay, but my sick days are gone and my vacay is almost used up. The leave should start soon, but I worry it won’t be long enough to take care of her the way I want to. 

Each day I try to find the right balance. When I go home to New York, I hire extra caregivers, which works pretty well as Bertie’s dementia has brought her to a place where she likes everything and everybody. I’ve never seen anything like it; but her current state of mind actually seems to be working for her. I fly back to New York this Friday, and experiment with a schedule of working for 4 days, with 3-day weekends in Austin. My heart wants to be here, but my mom would want me to be practical.

It is a bit lonesome down here. My social life is limited to the completely charming young bartenders in my hotel. NOT that I am drinking a heck of a lot, mind you … they know my story and don’t push. Hanging out in the hotel bar is pretty funny for someone who has darkened the doorways of 5? maybe 10? bars in her entire life. Sometimes I speak with random hotel guests. One evening I left my New Yorker wariness up in the room (Texans are friendly; it certainly can be disarming), went down to the bar, ensconced myself in my usual spot (I have a SPOT!!!) and got smooched by a random hotel guest. “Blech,” as Lucy says in Peanuts cartoons.

It is a gift and a privilege to care for my mother at the end of her life. I have no idea what I’m doing or how I am finding the strength. I am making it up as I go along. I am making mistakes. Lots. Making these decisions may be the hardest thing I have ever done. 

Sherry, Rick and mom

Rick, Bertie and Sherry in the garden (photo by Rick)

* * * * *

It may be fairly obvious, but nevertheless, Sherry would like to emphasize that she is not laughing at her mother.  Rather, she is making fun of her own discomfiture and that of her brother. And TEXAS. Definitely lampooning Texas. As a former Texan herself, now transplanted to New York, she is eminently entitled to satirize.  

When she is not commuting to Austin, Sherry works around the corner from Erica, making the world safe for Corporate America.

Boobs & Brains: Why Can’t We Be Friends?

I don’t understand why the Breast Cancer Walk and the Walk to End Alzheimer’s fall on the same day in NYC—October 19. It seems a shame that they can’t be assigned different dates so people who want to do both, can. Hmm. I did the Alz Walk because my mom has it, but my aunt had breast cancer and I have friends who have survived it too.

The Alzheimer’s Walk is definitely less sexy than the Breast Cancer Walk and attracts fewer walkers. They wear pink; we wear purple. They start at the Bandshell in Central Park; we meet at Riverside Park. People of all ages do the Breast Cancer Walk; same for us. They are raising money for boobs, and we, for brains. Ah, there’s the rub. Boobs trump brains. Most people think it only affects old people, but people in their 30s, 40s and 50s can contract what’s known as early onset Alzheimer’s. Perhaps the belief it only affects the old makes it less sexy too. Hmm.

Anyway, it was a beautiful, brisk autumn day and we had a excellent turnout. My friend “C” and I saw some of the Pink Brigade after our walk. We had brunch on the Upper West Side and boarded the #1 train to 42nd Street. As we tried to board, a barricade of tall people with giant, hard-shell wheelie suitcases impeded our path. Why do people with giant suitcases always stand in or near the doors? Just asking.

A woman in a pink hoodie, stroller in hand, barreled in without even saying excuse me. I jumped out of the way and said, “You could say excuse me,” and she said snarkily, “I did.” She did not.

C wasn’t quick enough and her tiny feet were rolled over by the high octane SUV-like stroller.

She said, “Bitch!” under her breath.

The woman turned around as much as she was able and said, “You don’t have to use that language with me.”

C and I rolled eyes at one another.

An older woman began oohing and aahing at the baby in the stroller and giddily talking to the mother. I’m sure the baby was adorable, but I never got to see her. Then a young couple chimed in, oohing and aahing and making funny faces at the baby. It felt like the entire subway car was FOR the pink-clad lady and baby and AGAINST the purple people–us. Okay, I’m probably being a tad paranoid. It was a New York moment–you had to be there. Nobody rallied around us, even though C had her toes crushed by Rude Pink Lady, and we were wearing adorable purple T-shirts. My God, a purple and silver “Grand Champions” medal hung around my neck and a Walk to End Alz purple and black tote bag draped on my shoulder. Couldn’t they see that we were VIPs? It only goes to prove my point: Boobs Trump Brains. Why can’t we be friends?