If you see something, say something

Several years ago, when my daughter was in junior high school, I confronted a couple of boys fighting on the street in our small, upscale, suburban town. A circle of kids surrounded the two as one pushed the other, goading him to action. Both were big for their age, nearly six feet tall, bulky and flabby and not yet comfortable with the size they’d expanded to. They were still, truly, boys.

I walked up to the one doing the pushing, stamped my foot, and shouted as sternly as I could, “Stop it!” They were startled, gave a “who me?” look, and pretended there was nothing really going on. My daughter, in the group of onlookers, was mortified.

That incident didn’t scare me. I never felt at risk. I was simply a mother, doing my motherly thing. And that was, after all, Chappaqua.

This evening, as I followed the heavy crowd of rush-hour commuters to a waiting subway shuttle, a young man in front of me and walking faster than the rest of us, dropped something. It sounded like a phone, so I bent down to pick it up for him. It wasn’t a phone. It was a knife. And just as I recognized it as such, he turned back, swooped down, and picked it up himself.

I was in Times Square, where there are, thankfully, many people, including many police officers. I walked up to the nearest pair of transit cops and told them what I’d seen. One of them went off to confront the young man, who by this time was on the next platform.

Then I got scared.

This man had a similar, young-for-his-size air; big, burly, his pants in danger of losing the struggle with gravity. And he stared right at me from across the tracks as I pointed him out to the officers. There is only one shuttle at a time between Times Square and Grand Central, and as I boarded, I started having visions of him waiting for me at the other end of the line... with his knife.

This incident worked out okay for me, a false alarm. I’m on a train, on my way home to my safe suburban haven. For the most part, I’m not fearful in New York, although that hasn’t always been so. But this incident hit me in a vulnerable spot. It reminded me that no matter how protected I feel in my own skin and environment, I can’t account for the unwholesome impulses of others.

Not to sound paranoid, but no matter how smoothly things seem to be going, there really can be dangers lurking in the shadows.

Hair today, gone tomorrow

Nearly two weeks ago, a couple of days after my last Abraxane infusion, my skin was very tender to the touch, particularly on top of my head. It was a symptom I remembered from the earlier treatment cycles, and I took it as a sign that my scalp was preparing to give up its recent crop of newly grown hair. But it didn’t happen.

I met with my doctor this morning and mentioned that I still have hair. Her reaction amounted to “Go figure.” She told me that another of her patients just went through his entire first cycle without losing his hair. Another medical mystery, and from my point of view, not an unwelcome one. It was easy getting used to having hair again.

Tonight I sat down to my computer and noticed short white hairs all over the keyboard. I tugged at locks and they came out in my hand. Oh well. Once again, I’ll be bald by the end of the week.

The pictures speak for themselves

It was a wonderful Thanksgiving; a small family gathering in upstate New York, filled with warmth and hugs and lots of good food. My taste was off, but it was still delicious! And it was a rare opportunity to enjoy both daughters at the same place and time.


I am thankful for the opportunity to go natural....

What does this mean?

Recently, when I asked my doctor about my allergic reaction to Genasense, I remarked that the drug company might want to do some additional tests to try to identify some characteristic in me that provoked this reaction. Surely, now that it’s happened once, this type of reaction will occur again. Is there more they can know about how to predict its likelihood? Is it as simple as the fact that there are no longer any active tumors in my body, no more Bcl-2 protein to attack?

She thought for a second, then related an experience with one of her earliest study subjects that refutes my last question. The patient has remained cancer-free the entire eight years since the study. The drug committee’s protocol at the time called for eight cycles; the patient’s cancer was gone after four. It was a new study then. My doctor and her patient were both nervous about stopping treatment, so they continued on for sixteen cycles with no adverse reaction to the drug.

So there you have it: one patient with a life-threatening allergic reaction, one non-cancerous patient tolerating the same drug for over two years. Is there any information in that? Is that even a meaningful sample? My experience may be so rare as to be of questionable value, just a red herring.

This may be the end of it. “Everyone’s allergic to something,” my doctor says. I only hope that my altered program continues to produce good results. But I’m trying real hard to keep anxiety out of the equation.

Overheard

I couldn’t help but hear the conversation on the next couch in the waiting room. The man had just gone off, rather cheerily, to the phlebotomist’s office to have blood drawn. His wife stayed behind to talk with a couple of friends they ran into there. Her tone was a bit desperate, pleading, disbelieving. It was all about the patient.

“He looks like he’s lost weight, but otherwise, he looks pretty good,” one of the friends commented.

“He looks thinner, but his weight is the same. He doesn’t sleep. He says he doesn’t sleep all night.”

“When that happens to me, I eventually doze off,” said Friend. “Is he in pain?”

“Yes, and they can’t tell us the source. The doctor says things are the same, but they can’t say where it is, why he’s in pain.”

“He says he’s full of anxiety,” Wife continued, “and the thoughts wake him at night and he can’t get back to sleep. Then he spends the whole day in bed. He doesn’t get dressed. He’s showered once in three weeks. He doesn’t come downstairs except to eat. He only goes out to come to these appointments. When we’re out, he comments how good the fresh air feels. I encourage him to go out and take walks other times, but he just stays in bed.”

“It sounds like he’s depressed,” said Friend.

“Yes.” Wife was certainly willing to accept the diagnosis, but she wasn’t finished rattling off her catalog of complaints. She didn’t know what to make of him, so she repeated his transgressions, louder and louder, maybe in hopes of scaring off the offending signs of anxiety and depression.

I can certainly relate to that patient’s feelings. I’ve been there. In fact, I never know when the anxiety is going to overtake and kick the wind out of me. I can relate to his wife’s reaction too. I’ve endured no end of criticism from the Wife who sits inside my head suggesting I exercise, seek out more client work, organize and finish my own paperwork, just do something. But it’s not that easy. There’s always the monster waiting around the corner, and he’s not at all shy about taking over my mood.

I wonder sometimes if it’s easier going through a life-threatening event like cancer alone, or with someone else close by. I can certainly see the downside of being by myself, and I’m very grateful for the many people who have reached out to me with kindness and made themselves available.

On the other hand, I’ve seen too many partners lash out at each other. Both sick and non-sick feel helpless. One or the other nags, and one or the other runs away. It’s a very sad and complex problem with a lot of wrong answers. The more people there are involved in the core of the situation, the more expectations get in the way, and the more opportunities exist for things to go bad.

The right answer is that there is no right answer. It's just a matter of facing this thing day by day, and trying not to hurt too many people in the process.

The cruelest cut of all…

“I can’t believe Thanksgiving is next week already,” my daughter commented last night after we’d talked a while about our plans for that day.

Thanksgiving is my favorite holiday. There are no religious or political themes to wade through, no overblown commercial campaigns to legislate generosity. It’s simply a glorious excuse to share hugs, warmth, and good food with loved ones.

“Next week? For real? Oh no,” I groaned.

“What’s the matter?” she asked, noting my change in tone.

I’d already done the math. “This coming Monday I’m due for my first Abraxane infusion. For about five days after that, food won’t taste like much of anything. Thanksgiving falls right in the middle of that.”

It’s about the people, I keep reminding myself.

“And you’ll take home plenty of leftovers,” my sister generously offered when I made the comment to her afterward. Now, there’s a gesture to be thankful for!

Fix me

I heard her complaints from the other side of the curtain in our shared hospital room: “I wish someone could pick me up and put me into a spot where I’m comfortable.” Her rants went on and on. “I won’t eat until my stomach clears out. I feel so impacted. I’m in pain.”

At times she sounded condescending. “You don’t understand,” she’d say to her nurses and aides as she refused medications, foods, drink, and treatments they offered that might ease her condition. Other times she was simply angry, augmenting her stubborn refusals by chastising everyone who tried for failing to help her. Too weak and sore to move herself into a comfortable position, she begged over and over, “Please help me sit up, just once more.” But then she’d scream, “You’re hurting me. You’re not doing it right.”

There’s not much in this world worse than constipation; unless it’s someone else’s constipation. There in the next bed, separated from me by a thin curtain, she bargained continually, whining, complaining, promising to be good if someone would only help her. “I can’t,” she whined over and over, and almost at the same time, “Help me.” Is she really saying, “Do it for me”?

“I can’t; I can’t. You try to feed me and I can’t eat. I Don’t. Want. Anything.”

Her private nurse attendant tells her she has to eat if she wants to eliminate. And she needs to eliminate if she wants to go home.

“I don’t want to go home,” she yells. “I want someone to hold my hand,” I hear her say under her breath. “Why won’t they just leave me alone?! Can someone please tell me why they won’t leave me alone?”

I’d been listening to this all day and watching the nurses scurry reluctantly in and out in response to her buzzer-ringing and hollering. They’d do their job perfunctorily and leave as soon as possible; which only made her more angry and ornery and abusive. I could no longer remain silent. I untwisted my IV line, pulled the pole along behind me and stepped behind the curtain.

“I’ll tell you why they won’t leave you alone. You’re in a hospital. It’s their job to try to get you better. And if they can’t make you better, they try to make you more comfortable. But you have been very resistant to their help, which only makes them want to get away from you. If you’re going to get more comfortable, you have to participate to make it happen.”

This is the first time I’d gotten a look at this woman all day. She is gaunt, emaciated, worn out, used up. Her belly is hugely distended. She embodies my memories of cancer from childhood, when “cancer” was one disease and it invariably ended in death. Initially her eyes were downcast and lifeless, with a heavy touch of guilt. She knows she's made my hospital stay less than pleasant; she's made frequent remarks how embarrassed she is about what the person in the next bed must think of her. Now I'm standing in front of her and maybe I'm going to dish her anger back at her.

“Your best bet is to go along with the program here, then get yourself home where you’ll be in a better position to be left alone. Have you looked into hospice?”

“No,” she said, “what’s that?”

I told her the little I know, which is that a person can have care in-home or in-facility, care aimed at making patients comfortable at end-of-life. She could probably get more information from the nurses.

She opened her eyes and looked at me directly. I’d dared to talk about her death.

“This is not fair,” she opened up. “Look at me. My stomach hurts. I can’t sit up. I can’t lie down. I can’t eat. I can’t get comfortable. I’m scared.”

“I understand ‘scared’,” I commiserated, “I have cancer too. But you’re going to have to stop saying ‘can’t’. No one wants to do anything for you if you don’t make an effort to find things that work. You have to let them know what you want and you have to let them try to provide it.”

“You’re right, it’s not fair,” I continued, “But it’s what is. There are a lot of things that aren’t fair.” And I related the story of the man who was struck by a car and killed in my hometown while walking on the sidewalk this past summer.

“I’m not afraid of death,” she said. “What scares me is what I leave behind. It’s having people see me this way, my daughters, their babies. I don’t want them to see me and remember me this way. It’s humiliating.”

“I understand. But you have to remember that what’s particularly unfair about death is that it robs the people left behind of someone they love. If you refuse to see them now, you’re taking away an opportunity for them to see you and love you and connect with you while you’re still alive. It’s awful to lose your mother. Let them have you while you’re still here… for them.”

I hadn’t wanted to touch this woman. Her appearance was scary, her demeanor hostile, hurtful, demanding, unforgiving. But she was looking at me directly through most of this interchange. I’d connected with her and I could see she appreciated it. She motioned for me to sit on her bed and reached out for my hand. We sat there, holding hands and understanding what it means to be in the cancer club.