Tuesday, July 31, 2007
I’m sitting in the dark… literally.
Last night, a huge thunderstorm rolled through the area. Loud, close thunder cracks, long streaks of lightning. The hard rain that followed was the least of it. Violent conditions played out over a short span of about twenty minutes, leaving car alarms blaring, dogs barking, and power lines down somewhere nearby. There’s no electricity at all in the complex where I live – not unusual in this area. I’ve experienced twenty to thirty power outages in the ten years I’ve lived here.
I have no power. Electricity, I’m talking about, but this is a metaphor for my general state of being. I feel powerless.
I am also resourceful. So, while there’s no electricity flowing through these forty homes, I’m sitting in my car, plugged into a cigarette lighter which is charging my laptop. I have no access to the Internet from here, but I can write and I can get some work done.
Which underscores the fact that my life is now, more than ever, full of roadblocks and obstacles. It's not comfortable in the least.
“Well, that’s obvious,” you might think. “You have cancer.”
But that’s not the whole picture. Cancer is simply my number-one priority that can interrupt anytime with a demand to drop whatever else I’m doing or thinking at the moment and attend to it.
And that’s not even the whole picture either... because my life had its share of black holes and disorganized messes to begin with. I’m sure that’s not unusual. Some people procrastinate more than others, but I’m certain everyone has things they just don’t deal with effectively. There’s a whole burgeoning industry of personal coaches, organizers, counselors, mentors, and motivational speakers to help people get control, get organized, and get on with life. I suppose you might even throw therapy into that mix.
This help sector has grown hugely in recent years. Bookstore self-help sections have bloomed proportionally along with it. But even with all the books and recordings, when people feel limited in what they can accomplish on their own, they look outside for someone to challenge and push them to achieve more of their goals. And maybe they seek assistance in hopes of shrinking the actual tasks themselves.
I’ve gone the route of mentors and coaches. They can be very valuable resources. But, in my experience, the value doesn’t result in instantly smaller tasks. The major simplification is in the eyes of the outsider. They can see our problems more clearly than we who have created those problems, we who remain mired in the thick of things.
I've had my own mentors and I've filled the role for others. I know I’m really good at identifying other people’s weaknesses and pinpointing where they need work, while my own pile of unfinished business continues to hold strong. No matter what the outsider sees or points out, the person with the problem is the one who must recognize its existence, acknowledge their part in creating it, and accept that there are options for getting out from under it. A perceptive outsider may see clearly and may even share those insights, but that doesn’t guarantee anything on the road to getting the problem fixed.
The outsider’s skills and strengths and insights might provide a mirror for where we’ve gone off track, pump us with inspiration to take on things we previously thought impossible. But in the end, there’s always work, even hard work, that only one person can accomplish. With an outsider to bolster our motivation, we might more readily take on the work, but we still need to roll up sleeves and dig in. We must wade through the paperwork, set priorities, make decisions, process and organize, and get the messes under control.
Where am I going with this? Why am I rambling? What does this have to do with cancer? And why haven’t I posted new blog entries lately?
Before my diagnosis, I had set some goals. I wanted to make changes to my circumstances to bring more fun into my life. “More fun” is an end product. The tasks I undertook to get there required work and dedication. I studied and evaluated many disciplines, attended workshops and seminars, set up legal structures to handle my new ventures, and invested in real estate. I’ve met some great people along the way, but so far the “fun” part has remained largely elusive. In fact, rather than simplify, my efforts served to complicate my life further, add more things needing attention, make the pile of unfinished business grow.
That’s where I was when I got the most distressing news of all from my doctor on June 11th. And that’s where I am today: inundated with paperwork, bills, to-do lists, half-successful undertakings, organization challenges….
Everywhere I turn I experience anxiety.
People call and ask how I am and I feel compelled to comfort them! I’m delighted to hear from friends, really I am, but I’m also agitated. They ask how I am and what they're asking about is the cancer. I can make a convincing case that my treatment is on track, my health is good, and my prognosis is positive. But that takes energy – energy I need to attack my mountain of tasks. And it leaves out the really ugly part of what it takes to get through day-to-day, simply to survive. Truly, that’s the part that’s demanding all my resources and has got me down right now.
I’m not in a pretty place. I haven’t been blogging most recently because I feel I need all my energy to attack my various problems. I haven’t wanted to stand up here and say “I feel lousy about my situation and I need all my resources to wade through it.” People’s response is invariably, “What can I do to help?” And as far as I can see, there is nothing. I have to do it myself. I have to experience it myself. I have to make decisions and get the work out of the way.
I had a house guest for the past couple of days. She came a long way to visit, to spend time with me and take my mind off cancer. This actually ended up being very painful for both of us. I felt her presence as an intrusion, a distraction from the mountain of work, a demand to comfort and reassure her, an interruption of the rituals that comfort me, a loss of my restorative alone-moments. I was very rude to her. She kept asking what she could do to help and I finally yelled at her, “For starters, you can stop asking me that!”
She was kind enough to look past my snappishness and see what was actually happening. It made her feel helpless, which only made me feel worse. My friend had come to be helpful and I made her feel helpless!
Those incidents are happening more frequently. My sister called the other day, and when her cell phone didn’t connect right away, I growled “WHO IS IT?” into the phone, thinking it was a telemarketer deserving of my rudeness. My ex offered to write a prescription for anxiety medication and I scoffed at him, "The last thing I want to do is sugar-coat my anxiety."
It’s night. I finally have electricity back in my house. Power restored to the physical plant, but control still lacking in my general sphere of existence. There is still so much to do.
In the back of my mind is the treatment schedule. I continue to take nightly Temodar pills until this coming Sunday. My appointment for the next PET scan is set for August 13th and the follow-up consultation with my doctor two days later. So I won't know the effectiveness of this cycle of chemotherapy and what the next steps will be until August 15th.
I don’t expect the anxiety to abate anytime soon.
Tuesday, July 24, 2007
My younger daughter, Carla, graduated from Duke University this spring with a Master of Environmental Management degree (MEM). Duke’s Nicholas School of the Environment offers excellent programs with many sub-specialties to satisfy a variety of interests.
Earlier in the semester she applied to several companies for jobs and all of them made offers. She chose the company she liked best, which happens to be about a million miles away. Well, that’s a mother’s perception. She’s on her way to California, near San Francisco, to start her new job at the end of this month. She’ll be a consultant doing “risk assessment” studies.
Although I’d certainly be more comfortable with her in same time zone as me, I’m extremely proud of her accomplishments, determination, independence, and idealism.
My older daughter, Rachel, lives and works in Manhattan. She’s a professional information specialist for a web design and marketing company in midtown, and likewise, one to make her mother proud!
At the end of last week, the two met up in Washington, D.C, about halfway between New York City and Durham, NC, and from there started the cross-country drive together. They should arrive in San Francisco tomorrow, Wednesday, when they can start house hunting before Rachel returns home.
I’m thrilled the two of them have this opportunity to share each other’s company, even if it is in the cramped quarters of a Subaru hatchback with two cats and boxes of household goods. They are very close, despite more than twelve years difference in age.
They’ve called regularly to report their progress. Last night they were in Salt Lake City, this afternoon they were driving though Nevada. They’ll finish the last leg of their journey in the morning after a stop in Reno for the night.
I can’t say enough how proud I am of these wonderful young women. They are the joy of my life! They’ve grown into their independent spirits, are responsible and headstrong, and lead very interesting lives. They have been of particular comfort to me in the weeks since my diagnosis. And it warms my heart to see how devoted they are to each other.
Monday, July 23, 2007
Yes, I know it will grow back eventually, and hopefully even curlier than before. But for now it feels like I’ve reached the point of no return.
For the most part, I’ve experienced very little in the way of side effects. In the past three weeks, there was one day when I was feverish, and a couple more when I had a rash of symptoms, including a fainting spell that may have been hypoglycemic and not related to the treatment at all. I haven’t been nauseous in the slightest, which is something to rejoice about. I’ve had headaches that may be due to meds, but are more likely coming from stress, and some low energy days filled with naps. But as far as the horrors of chemo I’d heard about beforehand, this is relatively simple.
Except for the hair.
It’s been hot, so I like going naked-headed to keep cool when I’m alone in the house. I can avoid mirrors pretty successfully, but there are unanticipated reflections all over the place: in windows when it’s dark outside, my laptop screen when I boot up, the oven door, the television screen, the glass in picture frames. These things are all over the house. My eyes travel to where I usually look, and I’m greeted by ET, an alien from another planet! It’s really weird.
Friday, July 20, 2007
The medical team I’ve amassed is amazing. World class! Apart from their impressive abilities, they’ve been very kind, considerate, and compassionate. I frequently see several nurses, phlebotomists, surgeons, radiologists, a dermatologist, an internist, and most amazing of all, my oncologist. The administrative staff is likewise, attentive and competent. I’m on a first name basis with many of those I see regularly, and they all treat me with thoughtfulness and respect.
In all my comings and goings through the Hospital and the Cancer Center, I’ve had only one interaction that offended me. That was with, of all people, a Patient Advocate!
“What is a Patient Advocate?” I wondered when she introduced herself to me. I’d never met one before, but she was walking up and down the line of waiting room patients, asking if and how she could be of help.
I was sitting in a hallway, drinking a none-too-tasty bottle of chalky barium sulfate in preparation for a CT scan. I’d brought my computer with me and was working during my hour-long wait.
She explained that she worked for the hospital and was tasked to see that patients’ needs were met. I thanked her and told her I didn’t need anything.
“I see you’ve found our electric outlets though,” she said.
“I shouldn’t use it?” I asked, somewhat incredulous.
“I wouldn’t,” she said stiffly.
So much for patient needs. For a few cents worth of electricity, she’d made me feel small, a petty thief. I wish I’d thought to suggest she tack the ten cents onto my bill of many hundreds of dollars for the procedure.
I believe this imperious woman had fleshed out her vigilante task on her own. But it’s clear that some positions are simply, by definition, a conflict of interest. How can someone who works for an organization adequately represent the needs of those who are clients of that organization? Where does the loyalty lie when the two parties’ needs appear to be at odds?
Patient Advocate is not, after all, a sincere task. It's another euphemism for butt coverage. It’s simply a matter of keeping up appearances of attentiveness in order to keep out of legal hot water. It’s akin to the conundrum of “managed care” imposed by health insurance companies. “Care” is the name they give, but cost containment is the game they play. Those two goals are very much at odds and frequently mutually exclusive.
The insurance companies play for bigger stakes, but a Patient Advocate, I've found, can still mess with your mind.
Wednesday, July 18, 2007
Today was an adventure of a different sort. I went to a client site for the day and when I left, met up with my daughter who works in the area. Both of us tired, we walked together toward Grand Central Terminal, looking to get a bite to eat and go our separate ways.
As we approached Bryant Park, we noticed people milling around in larger numbers than usual, not going anywhere, talking on cell phones, staring off in the distance, aiming cameras and phones all in the same direction. It was eerie.
“What happened?” It was obvious something had.
People with a little bit of information offered it up. “A transformer exploded near Grand Central. People were hurt. The cops are saying it’s not a terrorist attack.”
It actually turned out to be a 24” underground steam pipe, not a transformer. Chalk up another disaster for Con Edison!
We weren’t sure which trains and subways were running, though the ones nearest Grand Central appeared to be down. We found a line that was running and rode downtown to her apartment where we turned on the news, got online, and formulated a plan. By that time, trains were running out of Grand Central, but the only way into the terminal for passengers was from the north. I’d be able to get home after all!
My daughter and I were distant enough from this problem to simply be inconvenienced and confused. But there were people in office buildings all around the explosion who felt the streets rumble and buildings shake. Lights flickered, and thoughts of terrorism propelled them down many flights of stairs, where they were met with steamy white smoke and possibly asbestos in the air.
This sort of incident reminds that there are no assurances in life. Today I have cancer. Tomorrow I could be victim of a different sort of carnage. Life is precious and fragile and nobody knows just what’s in store.
Tuesday, July 17, 2007
I know there are some who follow this blog who may now be concerned about me, since the frequency of my posts has fallen off. I apologize for causing you worry. I am fine… considering the circumstances.
I’ve been dealing with symptoms. Not symptoms of cancer, but rather, side effects of a toxic mix of medications and byproducts of an off-the-charts level of stress: tiredness, constipation, aches, hair loss, anxiety, depression. I’ve been open and personal in this blog, but some of these issues are even more personal than I care to talk openly about, or that others would want to share.
Cancer is ultimately a very solitary trip.
Hair loss, yes; I’m finally losing it. My doctor said it would be two to three weeks after the Abraxane infusion, and sure enough, right on schedule, the shower of falling hairs increased dramatically this past weekend. I tugged tentatively on a lock, and it came out easily. I will be bald by the end of the week. I knew it was coming, but the actuality is even more devastating than I anticipated. There is so much “self” tied up in one’s hair. I’ve seen it repeatedly in bald men. For the most part, I find it kind of attractive… in men. But they are almost invariably sensitive and self-conscious about it.
And now I have some insight about how it feels. I walk into the shower and before it’s over, huge handfuls of hair lay on the tub floor. It makes my heart sink.
I’m back on the Genasense pump. This is the experimental drug that improves my receptivity to the chemotherapy. I'm wearing a pack around my waist that holds this heavy little electronic device that measures and distributes the drug through IV tubes into my mediport. This pack is my constant companion until next Monday, when the IV bag will be empty and I will get another infusion of Abraxane.
I had to get up very early yesterday morning to go to the hospital before heading to the doctor’s office for my all-day appointment. I checked in with the surgeon about the lump I felt under my skin next to the mediport since last week. He asked the same questions all the other medical people had asked: Is it red? Sore? Hot? They are concerned about infection, and the answer to all those questions is “No.” He looked at the site, felt it, and determined that it’s scar tissue. This is to be expected, and will take six months or more to recede. But it will not interfere with the IV infusions through the mediport, which was my concern.
Later, at the cancer center, my doctor and the nurses I interact with all responded compassionately to my diminished hair volume. It must be so painful for them to witness this over and over; as of course, it’s such a painful milestone in each patient’s treatment.
I’m struggling with the terrain, but I’m happy to be here to report on my travels through this blighted territory. To some extent, it’s business as usual and time is flying by. I’m already halfway through the first treatment cycle.
In another sense, it’s as if I’m watching myself place each foot in front of the other in slow motion, one step at a time. It's dangerous and it's scary, but I'm here to make the trip.
Truly, each day is a gift.
Friday, July 13, 2007
This vacation has been a wonderful interlude, very relaxing and comforting… until last night.
I always reach a point during travel when I wish I were home. I start thinking of the tasks I haven’t finished, the things left unattended. My mind departs the trip before my body is ready to get in the car/plane/train. I start feeling anxious and antsy, anticipating the next transition.
Yesterday morning I woke up and felt a lump under my skin next to the mediport in my shoulder. It didn’t hurt, wasn't red, and didn’t show signs of infection, but I was concerned it might be a blood clot that would interfere with my IV treatment scheduled for Monday morning. My mind went immediately to my medical support team in New York.
I called my doctor, and the doctor who implanted the port. I spoke to several people who all seemed fairly unconcerned with the situation. I don’t have to rush home, but rather, can have the surgeon check it before I go to the doctor’s office to start treatment. That’s a relief.
I don’t know what contributed most to how I felt once I got into bed last night: the mediport incident, my anxiety about travel, or the state of my life in general. I tossed and turned until I finally fell asleep, then spent the rest of the night feeling chased, running from some vague terror.
I’ve always taken pride in the fact that I’m not particularly a worrier. I’ve managed to stay clear of anxiety much of my life by refusing to worry about things that hadn' yet grown into problems.
Time to get on the road….
I’ve been on my friend’s farm in Virginia since Tuesday with no agenda other than “go with the flow.” Very strange… and very fun. The sounds of nature come through the bedroom windows early in the morning, with roosters, peacocks, and guinea hens being the noisiest. The sounds all blend in with the cool mountain air.
I woke up one morning and noticed what appeared to be someone by the fence outside my bedroom window. “Why is there a person in a green coat leaning against the fence?” And then I looked closer and saw it was a peacock, maybe the one who woke me a 6:30. I didn’t get a picture of that one, but found the one above sitting in the barn later in the day.
Life is simple; my friends are caring and nurturing. I’m happy to be here. And I managed to get some pictures of the resident hummingbird while drinking morning coffee on my friend’s deck.
Monday, July 9, 2007
I brought up the issue of last week’s near-fainting incidents with my program coordinator nurse this morning. “Is this what the doctor meant when she said I’d crash?”
“Not at all. You’re the first to report such symptoms. It sounds more like a hypoglycemic episode. Make sure to eat, especially in the morning, especially in this heat.”
(I love food, but morning and heat spells are not my favorite times to eat!)
“And speaking of eating, are there any guidelines? I hear some say eat soy, others say to avoid it.”
“Nutrition is nutrition. Just eat well. And stay away from raw foods that may be contaminated, like sushi.”
(Bummer! I love sushi. It’s a small price to pay, though, to improve my chances of getting well.)
“What about alcohol? Is that allowed with chemo?”
“A glass of wine or beer with dinner is okay.”
(Sigh… so much moderation… so many things to consider.)
I’m two weeks into my first cycle of treatment and still learning the ropes of what to expect and how to react. One thought keeps surfacing in conversation and in my quiet moments: Apart from the bad luck of having cancer, aside from the devastating connotations of terms like “metastasized” and “stage 4”, I feel fortunate. The doctors found my cancer because they were looking for it, because they were monitoring me. If I hadn’t been scanned every year since my initial melanoma surgery, I could easily have turned up a year or two from now with raging symptoms and uncontrollable tumors throughout my body – not a pretty thought, but it does happen. In fact, most of the deadliest cancers do their dirty work in the dark silence of internal organs, frequently announcing their presence only when it’s too late to root them out.
In addition to early detection, I’m also fortunate to have a dedicated, world-class medical team available to me. Melanoma is not something to toy with. It’s vicious and sneaky and insidious and lethal. I can count on spending the rest of my life being vigilant about smoking it out of hiding.
Every day's an adventure....
Saturday, July 7, 2007
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….
Thursday, July 5, 2007
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.
Wednesday, July 4, 2007
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.
Tuesday, July 3, 2007
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”?
Monday, July 2, 2007
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….
Sunday, July 1, 2007
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….
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….