Free floating

I don’t know what to make of… anything. I’ve lost my frame of reference. I’m no longer able to live my life on autopilot. Everything seems at once new, over-stimulating, and threatening. Every step requires thought and intention. I feel I’ve lost the basis of making decisions about things so simple as where to place my feet.

I haven’t cried over my condition, but today I came close. I carry a constant sense of dread and sadness, and today it feels very heavy.

The irony is, it was actually a good day. My daughter came to visit after work last night. We huddled on the couch and watched a movie. Today we went to Brooklyn for something billed as Cupcakes Arts & Crafts Day at a place called Etsy Labs, an establishment that encourages and teaches craft-making techniques. So very 1970’s! Lots of people socialized while fashioning fabric, yarn, paper, plastic clay, and other supplies provided by the coordinators into anything resembling cupcakes… or not resembling cupcakes. A very freeform day, with very freeform results, that served to underscore my own freeform lack of direction.

After the event, we met up with one of my daughter’s oldest friends, a young man very dear to my heart, and this meeting posed the decision that broke the camel’s back, so to speak. Although I wanted to share my “news” with him, we were surrounded by his friends, people I didn’t know who were all on-track with young families and young lives. It seemed unwarranted and unfair to introduce such a somber note into their festive gathering. I left without telling him, and drifted toward home.

It’s clichéd to think so, but time passes so very quickly. There is no gap at all in my mind between our Etsy Labs tour and the many similar things I did in the real 1970’s. My daughter and her friends were the babies my friends and I carried around on our hips at the time.

I wish I knew where I fit in….

So, how am I doing?

I’m getting used to the phone calls and emails, expressing concern and asking how I’m feeling. To my surprise, I rather like it! It’s not that I ever wanted to shut people out, but attention tends to make me uncomfortable. Now, attention simply comes with the territory, and I like the contact. I like feeling connected.

People are curious, “How are you feeling?”

In order to answer them, I look inside, “How am I feeling?”

And because the terrain is so unfamiliar, I’m never quite sure how to interpret the results.

So today… I’m feeling down, a bit lethargic. My joints ache. The top of my head is sensitive. I have a slight headache, sore gums, and a metallic taste in my mouth. Is any of that relevant? Is it coming from the disease I’m fighting, or from the drugs that have it under siege? Maybe it’s the muggy weather. Or perhaps I can chalk it up to any of a ton of environmental factors.

Could anyone but my doctor be interested in such a laundry list? Am I sick of observing such minutiae myself?

I’m used to taking my emotional temperature. I’m a New Yorker, after all, a lifetime resident in the land of psychotherapy and self-examination. But this is getting ridiculous.

Happy Birthday America!

July 4th, a quiet day. This year is different. The Fourth falls on a Wednesday, a little island between two potential four-day weekends. With no consistent way to expand the holiday, everyone is free to come up with their own way to celebrate. As it should be… this is, after all, Independence Day.

My day is quiet. I’m still feeling the effects of Monday’s treatment; aches and tiredness and a time for reflection. I’m left alone with memories of girlhood Julys, reminiscing in my mind on festivities in my mother’s hometown.

Every summer we migrated from Brooklyn to my grandparents’ homestead in the mountains of northeastern Pennsylvania in time for the Fireman’s Day Parade and the seasonal opening of the regional amusement park. That park had been there since the turn of the 20th century, drawing city dwellers to the little lake town all summer long. By the 1950’s, it remained closed much of the year, but geared up for a brief run around the Fourth with rides and games and cotton candy and a carnival atmosphere.

In my mind, I’m there.

Crossed wires

I arrived at the doctor’s office for my 9:30 AM appointment to draw blood. The phlebotomist stared at two test tubes, looking confused. “One is marked 8 AM, the other says noon.”

My doctor poked her head in. She had gotten an ad hoc request from the research committee for additional blood, but she hadn’t gotten the message until 9 AM. We could draw one sample now and another in four hours. Could I plan to come back?

Fortunately, I was planning to stay in the City after my appointment, since I’d arranged to go to a client.

When I got back to the medical office, I had another few minutes with my doctor. I told her I was feeling dizzy earlier, vaguely nauseous. “That’s not a typical side effect. Have you eaten?”

“Not really. I’m also feeling wired, jazzed.”

“Well that is typical. Before the Abraxane yesterday, we gave you a steroid, which can make you feel wired for 24-48 hours. You’re reacting to that. And you will crash.”

Oh dear… elephant alert!

After drawing blood, I walked to Grand Central, where I had just enough time to grab a slice of pizza before getting on a train. I sat down to eat it, took one bite, and felt the color drain from my face. I was suddenly faint, nauseous, sweaty, and clammy. I ditched the pizza and headed for the train, but got only as far as the nearest police stand. They sat me down and called their in-house EMT. “There’s a woman here, about forty, pale and feeling faint.”

If I weren’t afraid I might throw up on him, I’d have jumped up and hugged the young cop!

The EMT was very thorough. He insisted on feeding me oxygen. I kept pulling the mask off.

“I don’t need this. I’m feeling better already,” I said.

“You need it,” he said, as he replaced it over my mouth.

“Your blood pressure is low. I think we should call an ambulance and take you to the hospital.” He was a well-meaning angel, but I’d gotten in over my head. I certainly didn’t want to end up in yet another hospital!

“No, no. Just wait a few minutes and take it again. It will go right back up. Maybe I should go sit on the train.”

And in a few minutes, I did, indeed, regain my color and vital signs. Another EMT carried my bag and shepherded me to the next train. He smiled appreciatively when he lifted my rather heavy computer bag. “I’ve never met a woman who wasn’t stronger than she looked.”

Yes… if not for this damn cancer, I’m healthy as a horse!

I wonder, is this what she meant when she said “crash”?

Off the pump

Chemo. The word alone is frightening. “So-and-so is on chemotherapy.” This used to easily invoke images for me of faceless techs in darkened rooms administering painful injections of searing drugs; patients retching for hours on end. Maybe that’s a little dramatic. But surely, it must be a sad and somber event.

Today was my second in-office infusion day, and I’m here to report… there could be worse. Every individual has their own experience, of course, and the point on the timeline contributes to one's current reaction; it's said to be cumulative. But today again, my visit to the infusion floor was pretty relaxing.

The medical staff is kind, empathetic, warm, and helpful. My “infusion nurse” is the same every time I go in. There’s comfort in consistency, and she’s a delightful person, to boot. She grimaced in reflected pain when she saw how irritated my sensitive skin is from the bandages holding the IV tubes in place. She administered my dose of Abraxane, drew blood many times, joked and schmoozed, and sent me home. I look forward to seeing her next time, even if it does mean she'll hook me back up to the pump.

I brought along special friends: my computer and cell phone, so I was able to get some work done and feel connected to my life. I dozed in my reclining chair, ate lunch, walked around when I needed to stretch.

I still don’t know what to expect of this journey. I asked my doctor a lot of questions this morning, before getting started. It’s a fine line to walk. I want to gather enough information to feel some control, but not speculate so much I get lost in “what-if” circles.

I asked about the side effects I experienced last week: headaches, fever, migraine aura – all expected results in this study. There’s no reason to believe the dog tick I found on the back of my leg last weekend contributed any measurable ill effects, but we'll watch for unusual symptoms from that too.

“What will you look for when I go off the meds and get scanned?” I asked.

“After the first cycle, we’re happy if the tumors remain stable from the last scans. If they’ve grown in size and number, we’ll rethink the plan we’re on. If they get smaller, that’s a terrific sign, but even if they haven’t changed at all, we’re encouraged.”

“Okay… chances are good then we’ll do a second cycle,” I speculate hopefully, “but what determines if you do a third, or a fourth?”

“We’ll continue as long as we see improvement; even a plateau.”

“I thought there was a ceiling of four cycles in the trial. Do you ever do more?”

“Yes. The protocol initially called for four cycles. But when we see continuing improvement, we continue the treatment. We’re looking to change the protocol to spell this out.”

So this is what research is all about: Set goals, and when the results come rolling in, change the parameters to achieve higher and higher goals.

When I first met my oncologist five years ago, she told me she hated melanoma. It’s personal with her, a vendetta. She hopes to find a cure, and she works very hard at it. She works for one of the top medical centers in the world, in a city full of world-class medical treatment. It’s not a race to see who gets to the top of the mountain first; she collaborates with the other top centers. NYU, Sloan Kettering, Columbia-Presbyterian – they all remain connected and aware of each other’s research. Her ethics dictate that if there were a better program somewhere else, she’d send me there.

Over the years I’ve seen her look weary many times. Melanoma takes its toll even on those who don’t have it! Just as my elephant can run me over in an instant, she sees patients all day long, each never far from their own elephant. She’s constantly dodging pachyderms, and I’m sure it’s exhausting!

When I first met her, I was so impressed with her dedication. My clinical trial is not her only research. She’s exploring vaccines also. Something stirred deep inside me, a desire to help her achieve her goal. Maybe that’s part of why I’m here….

Multitasking

I first encountered the term “multitask” in connection with the huge mainframe computers I worked on in the 1960’s and 70’s. Big iron. They were designed to “timeslice”, to literally slice seconds into unimaginably small intervals, during which they’d pick up a task, perform some small portion of it, table that task, and direct attention to another job waiting for its tiny share. In time, all jobs finished. And the miracle was, it looked like the computer accomplished it all at once! The overall time was actually greater than the sum of execution times for all individual jobs, since the computer bore the overhead to bookmark each one, put it aside, and pick up the next from where it left off. But we’re just talking a total of seconds or minutes here. The perception was that everyone got their output at the same time. Everybody was happy.

Computers multitask really well. Email, Internet surfing, word processing, applications – all going on at once, while sporting a pretty, user-friendly, graphical face. In the years since I first began working with them, the amount of computing power available to casual users has become staggering! I marvel at what I carry around in a pack on my back; it’s more raw power than a roomful of equipment in the old days!

Yes, computers multitask really well, but humans tend to fail miserably at it. I know this human does.

In my brand of multitasking, I start something… reading an article, for example. As I’m reading, a thought intrudes. “This reminds me of….” Or, “I wonder if I have time to….” Or, “I haven’t heard from….”

Suddenly, I’m staring at a page and can’t remember why. Before I figure it out, I remember there was a competing thought I wanted to address, but it passed in and out of my brain before I could document it and now it’s gone too. I’ve lost both trains of thought. I stare around my office, looking for the inspiration that might bring back one or the other thread, and see evidence of many other such objectives competing for my attention.

I’ve always been this way. I remember taking pride when a colleague observed admiringly, “You don’t think in a straight line.” The comment was intended as compliment. It came from a man, who chalked some of it up to multiple streams of female intuition. And in fact, when I was younger and feeling really on top of my game, perceptions came from every part of my being at once, and I could more easily hold two thoughts in my head at the same time.

Today is different.

There are the usual factors: life is a busy thoroughfare, overcrowded with details of multiple goals, hampered possibly by the onset of age-related memory loss.

But today I have an additional distraction. Whereas last month I simply had a busy life, now I have a new number one priority. This new priority has my attention; it’s life-threatening. Everything I start takes on a new urgency: Will I be able to finish this before my number one comes knocking with a new demand? My former number ones don’t stop screaming for attention, but they can get knocked out of the box anytime.

Concentration and focus are hard to come by. I have to remember to keep breathing….

Another form of radiation therapy

On first hearing that I have cancer, many respond, “I’m praying for you.” Others, knowing I don’t pray myself, have hesitated to suggest that.

I want you to know that, regardless what form my own spirituality takes, I believe in the healing power of prayer. I greatly appreciate your willingness to direct kindness, love, and healing thoughts my way in any form you know. Such a gesture comes straight from the heart. You offer to share with me something that is very meaningful and comforting to you… and I benefit.

Your generosity of spirit makes me stronger.

I hope you who do pray, continue to pray for me. I promise I won't turn away any good thoughts. I need you all on my team….