Perspective

The strangest thing just happened.

I’ve been beating myself up all day for not jumping on a particular client issue more swiftly. I apologize to readers who may be numbers-averse, or whose eyes glaze over when you hear the word “accounting”, but I need to get a little technical to provide some background.

The Director of Finance uses an application I created for her predecessor to create monthly reports that compare actual expenditures to budgeted figures. My software doesn’t handle accounting at all; that’s done by a well known business software package that simply records transactions, one after another. My application reads their general ledger, applies complicated business rules to the gathered figures, and creates reports that reflect the real-world use of their money.

A few days ago, I found out they upgraded their accounting software to a new version. No one thought to tell me they’d moved their database until my application crashed for no apparent reason.

Once we got database access sorted out, my client was able to run her reports. Except now, all the actual expenses and income showed up as zero. I knew it had to do with the new accounting software, but I had trouble setting my focus on what might be wrong. When I finally got to it, it was simple and obvious.

The accounting software has always identified transactions in the period they occur, for example 200801 for the first month in this fiscal year. Every month from July to June, the last two digits change, 01 through 12.

The new version of the accounting database inexplicably changed that designation to 2008001, allowing three digits for the month. Obvious to my computer friends, but maybe not so much to others is this: when you look for a range of transactions from 200801 – 200802 (July and August of the current fiscal year), the new format returns no matches. No data at all!

It was near the end of the day when I identified the nature of the problem. I sent email to explain, but wanted to make sure my client saw it before she left for the weekend, so I called her while still silently kicking myself for dragging my feet.

Now, here’s the strange part: the disconnect between the way I’d been feeling and the way she thanked me. I was concerned I’d let her down by not contacting her sooner. She, on the other hand, said, “Thank you for coming through for us… like you always do.”

Over the years, friends have pointed out that no-one is harder on me than I am. I see all my flaws in full color 3-D. I try to overlook my weaknesses, but more often than not, they are simply the self-worth assumptions I live with, my baggage.

Some advise that when negative thoughts bubble up from your gut, you should pat yourself on the back and say, “Thanks for sharing.” I can do that. What I have trouble with is recognizing the negative thoughts in the first place.

Another treatment day

The day started badly. I showered and dressed and got ready for a long appointment in the Cancer Center. But I missed my train. The next one would come along in about half an hour and get me into the City about forty-five minutes late. Standing on the platform, I remember the lunch I so carefully prepared to bring with me. It was still sitting on my kitchen counter. Whoo boy.

As I walk from Grand Central to the doctor’s office, already feeling hungry and craving pastrami, I call my daughter, who I hoped would be at her desk computer. “Can you find me a pastrami sandwich on Third Avenue between 42nd and 34th Streets?” And sure enough, she does: “Sarge’s Deli, where pastrami is king.” I knew if anyone could locate something like that in a trice it would be my daughter, the “semantic web” specialist. I was simply delighted to be able to satisfy my craving.

The appointment starts, as always, with blood work. Sometimes there are more tubes to fill than others. Sometimes there is more blood to draw after the infusion. But always, we start by drawing blood.

I know all the phlebotomists by name. They see lots of patients in the course of a day, so they are all well practiced and good. But they have different strengths. Josef, for example is my favorite. His needle sticks never cause me pain. Never. Today, Judith drew the blood. I feel the needle sting as it goes in, and she sometimes leaves small bruises behind, but she is always very engaging and we chat amiably.

After meeting with the doctor and nurses who monitor my participation in the program, I go downstairs to the treatment floor. By this time, my Genasense IV bag is empty and the electronic pump is beeping wildly. People in the elevator eye me suspiciously. Is this an escape of some sort?

I sit in my private room and work at the computer while my infusion nurse prepares my chart and orders meds from the pharmacy. When the drugs arrive, she draws more blood. This time, she fills the test tubes from the line into the mediport. It is quick and there is no sting whatsoever. Then she puts the mediport to its more intended use as IV, and infuses first the steroid, then the Abraxane.

By this time, I am very tired. I fall asleep while the IV drains into me, and when it’s over, I have a sort-of dream that I can’t open my mouth to speak, can’t lift my arms, can’t move my head or body. It’s disorienting, but I’ve had this dream before, usually when sleeping in a car. I think it comes from being comfortable enough to sleep, but feeling restricted by the reclining seat. There’s no room to turn over, and I can’t exit the seat without changing to a sitting position. When the nurse comes by to disconnect my line and tell me I can leave, I ask if I can stay and sleep. “Of course,” she says.

An hour or so later, I wake, pack my bag, and get up to leave. I stop at the nurses’ desk to say goodbye. She looks at me and says, “Go back and sit down. I’m calling your doctor.” It seems my face is breaking out in hives. Oh no. This happened a few weeks ago. It started on the weekend, just before the last Abraxane infusion. The steroids cleared it up for a few days, but the condition returned with an intense vengeance several days later when they wore off.

So, it’s back upstairs to show off my hives and get yet more drugs: Claritin for the trip home, and Benadryl to take when I’m near my bed, as it will make me sleepy. They want me to take anti-allergy medications for the rest of the week as a proactive measure.

The day ended badly. I fell asleep from the Benadryl and overslept the radio alarm I’d set to wake up and take my Temodar chemotherapy pill. I hope it’s all right that I took it in the middle of the night instead.

So many medications to keep straight....

More of the same

I haven’t been posting to the blog. It feels a bit like complaining to get up here and say: I had another lousy day. Am I losing sight of the prize? I am, after all, getting better from this treatment, even if I have to put up with fevers, low energy, sensitive skin, joint aches, headaches, and sometimes worse? And not to forget the round-the-clock schedule of drugs, both chemo poisons, and over-the-counter remedies that address my side effects.

Yes, my life is consumed by the details of complying with the treatment plan and dealing with its fallout. It’s not pleasant, but it’s what I have to do. I feel like an idiot savant, constantly chanting to myself: two Tylenol and two Metamucil capsules at 10:00 am, two Advil at 4:00 pm, two Tylenol and two Metamucil capsules at 10:00 pm, Zofran at 10:30 pm, Temodar at 11:30 pm.

I will say this though: whoever dreamed up putting Metamucil into capsules is a genius! The powder form of this “Psyllium Dietary Fiber Supplement” is one foul tasting treatment that I always shunned. Even the flavored varieties can’t mask the slippery, grainy, unpleasant texture. But the capsules are very effective, address a variety of conditions, and are easy to take.

I keep track of all my side effects and all the drugs I take in a spreadsheet that my medical team reviews. They, of course, can appreciate the minutiae of what I go through since it helps them put my and other people’s reactions into perspective.

But friends? Do they want to hear those details? I’m skeptical that’s what friends want to hear. In fact, I asked that very question last night when I visited with some friends.

They are creative types I’ve known as many as twenty-five years. It’s a free-flowing group of “attendees” who meet at the home of one woman nearly every two weeks. The hostess doesn’t drive at night, but she loves the company and has a comfortable home that accommodates it. The mostly women who show up usually bring their latest craft project to work on, and to share for critical fine-tuning. When they bring their husbands, those men typically fall asleep on the couch in another room, or visit with my friend’s husband. Topics around the table branch out to life issues and concerns. This “Group” has grown to be a family.

My dear friend has crafted a life around a medical condition that’s thrown limitations at her for over thirty-five years. She doesn’t complain about her symptoms. She hosts a potluck party!

“How are you?” they ask me when I enter the room. I show them my mediport and my portable IV. They are concerned that I was feverish earlier in the day.

“Are you really interested in this?” I ask skeptically.

“Yes,” they assure me. It puts a visual picture together with the words they’ve been reading here in the blog. It’s a reminder that I, their friend, continue to struggle with a problem that takes a different form every day. It gives them a sense of what to expect in the outside world with other people who might be more reticent to talk about these issues. It adds depth and perspective to the growing problem of cancer and chronic conditions in an aging population.

I’ve always believed that honesty is important. There are topics I can’t talk about publicly – religion and politics jump to mind. But this is one arena where I want to make a contribution.

I miss my mother

There isn’t a day goes by I don’t wish to pick up the phone and dial my mother at the same number we had when we first moved to Long Island in the mid-50’s. What a long line of Bell cable connected that number back to the phone that witnessed endless hours of conversation with and about boys through my high school years! But that’s a different story… losing touch with personal history. In the moment, I miss my mother, who died suddenly at eighty, a year and a half ago.

Heaven knows, my relationship with my mother wasn’t always smooth. And when I say I miss her, I’m not sure if it’s the woman she was at the end of her life, the young woman who cried and fretted and called the police when I arrived home late from kindergarten, or some version selected from millions of other moments before, between, and after. Truth is, there were many times during my life when I longed for a mother who lived only in my heart, and missed her even while facing her.

But again, that’s a different story.

What I’m struck with right now is the unfairness of death. Not death itself, of course. Death is truly the fairest thing about life. Everyone dies, no matter the circumstances of their lives, no matter how much or how little they contribute, no matter how happy or miserable they feel from day to day. Everyone dies. That’s fair.

Earlier this summer, a man was walking through the small suburban town where I live. At the same time, an elderly woman drove down the hill toward the town’s main intersection. She had a seizure right at that moment, lost control of her car, and proceeded to run into and kill the man walking on the sidewalk.

What is unfair about death is the timing and the trappings: Young people robbed of a future; accidents that randomly pick off unsuspecting, unprepared victims; people of any age ravaged by debilitating diseases; acts of cruelty and violence meted out by cowardly bullies. To be truly fair, death should allow everyone the chance to expire of natural causes at the point where they can no longer care for themselves or feel connected to life.

What is further unfair is how death affects those left behind. Regardless of the circumstances that take the one who dies, the rest of us are never ready to lose a loved one. It’s difficult, if possible at all, to integrate the fact that we’ll never see someone again, never get their opinion or advice, never do lunch, have an opportunity to tie up loose ends together, or simply sit in their presence and feel their warmth. We counted on consistency, but now we reach out to touch and get no response. How very unfair.

Needless to say, I’ve thought about this a lot this summer….