Unrestricted membership

The “club” has a very varied membership. Cancer patients don’t have to have any common characteristics, but we share a bond of common experience. It’s not based on the severity or longevity of the disease so much as the fact that we’re all dealing with life-threatening circumstances. All of us know that whatever we’re doing at any given moment, if the cancer makes a demand, we need to answer; cancer suddenly becomes our highest priority, the thing we’ll drop everything else to attend to.

In most cases, this knowledge confers the warmth of shared understanding. We become more compassionate with each other because we know we’re also understood.

Not long ago, I arrived at The Cancer Center for an appointment and headed for the ninth floor. Another woman, wearing a baseball cap with little underneath it, made it to the bank of elevators just before me. I saw her push the button just as a door closed and the car left the gate. We looked at each other.

“Just missed,” I mused.

“By a hair,” she smiled wryly.

“So to speak.”

It was a private, cancer moment, and from the look on her face, I knew we’d shared something much bigger than an elevator.

Chutzpah

Unlike most of my visits, the waiting room was packed full, just like the doctor’s schedule. Many of us had been sitting there for a long time, waiting, wondering what emergency might have caused this logjam.

An elderly woman walked in and briskly approached the receptionist’s desk. She had no trouble walking or communicating. “I’m EJ,” she said, loud enough for all of us to hear. “Is the doctor running on time?”

“No,” the receptionist said apologetically. “She’s almost two hours late.”

Some of us in the room exchanged glances. We didn’t need to be told things were backed up, but the actual number startled us.

“Well, tell her I’m here. I’m eighty-nine years old, I’m a cancer patient, and she told me she’d see me immediately when I got here.”

Again, the shared glances; we couldn’t believe our ears. This entitled woman was playing the “C-card” in a waiting room full of cancer patients!

Proud mama

I got an excited call from my younger daughter last night. She’s been accepted into the one doctoral program she applied to, with offers of assistanceship and fellowship money both in the works. Come fall, she’ll be working with an environmental chemist at Penn State, pursuing her lifelong dream to “be a scientist” when she grows up.

Being a scientist was kind of an abstract dream initially, but she’s followed it all the way through graduate school so far, combining an undergraduate degree in chemistry from McGill with a masters in environmental management degree (MEM) from Duke. Now, an opportunity to study soil chemistry and the way plants absorb metals is a perfect way to pull all the pieces together – her passion for science, and her penchant to understand and benefit the ecological system we live in.

“I wasn’t sure I’d get in,” she said to me.

I laughed. I’d heard the same story since elementary school, when she claimed to not be good in math. Every test was one she suspected she’d failed. But she is a hard working and eager student. She headed off any suspicion of academic failure by setting her sites on her targets and keeping very focused on her work.

I’m so proud of this accomplished young woman. She’s taught me plenty about goal setting and achievement. I’m looking forward to this stage in her life and academic career.

And I very much look forward to having her back in the same time zone!

Amazing

A friend pointed me to a website that I think is amazing, many levels of amazing. It’s actually a blog site, here on www.blogger.com, which means it’s completely free of charges for the person who owns it; no hosting fees, no setup or maintenance fees, no traffic fees, nothing. And that’s just for starters.

The woman who created the site appears to be a hip, young, free-spirited, and very talented writer and photographer. She spent several years in San Francisco before deciding to return to New York City, then headed off on her Vespa motor scooter for a slow, scenic trip home. Along the way, she fell in love with many places, so it wasn’t long after she got to NY before she turned around and headed for the wide open spaces of Wyoming, where she’s been living in a one-room cabin, in a town of 300, for the past couple of years.

Now here’s the serendipitous part that pulls all the other amazing parts together: the project. Last spring an orphaned, newborn coyote wandered into her life. Both its parents had been shot, and it would not survive without some form of nurturing; so, since harboring a wild coyote is not illegal in Wyoming, she took the animal in. Being a photographer, she shot fantastic pictures of the baby daily. And being a writer, she supplemented the pictures with tantalizing stories of his development. The coyote has grown almost to adulthood and has stuck around to become part of a multi-species family: one female adult human, one tomcat, and Charlie the coyote.

www.DailyCoyote.blogspot.com is the popular site that’s the outgrowth of her adventure.

Before you take off to look for yourselves, I want to give a computer tip: If you hold the Shift key while you click on the link, the website opens up in a new window. Even better, if you’re using Internet Explorer 7 or FireFox as your browser, you can hold the Ctrl key while you click the link to bring up the website in a new tab of the current browser window. And if you’re using Windows Vista, you can click the link with the middle mouse button, if you have one, to open in a new tab. All of these options leave the window where you’re looking at my blog intact, so you don’t have to lose it or navigate back to it. And yes, there are Mac equivalents of the hotkey combinations, but darned if I know them….

I’ve had discussions with some of you about using the Internet to generate income. There are lots of people doing it, and lots of scams and schemes around that promise to shoe-horn you into an Internet business of your own… for a fee. They don’t all work, at least not for anyone but the person selling the formula. And many of them are really tacky implementations, not something you’d want your name attached to.

The DailyCoyote site, on the other hand, is an exemplary model of a tastefully executed website that offers visitors high quality content for as much or as little as they want to pay. The selling is subtly integrated into the site – photographic prints, coyote calendars, paid subscriptions for email delivery – all there if you want it, but not forced down your throat. And the site remains amazingly beautiful whether you buy or not.

I’m so impressed at the quality of DailyCoyote. The implementation is awesome and she deserves every ounce of success that’s bound to come her way. It leaves me wondering how to make a similar statement in a realm I’m familiar with. Quite a challenge!

Lose the small talk

A friend who owns a folk art gallery nearby gifted me with a wonderful hand-carved sign that cracked me up in her store recently. Since I found it hilarious (for multiple reasons), I thought I’d show it here, rather than try to describe it.

This sign would have spoken to me at any point in my life, I’m sure. But in the throes of a battle with cancer, the last thing I’ve been able to deal with for the past half year or more is “perky”.

Mind you, I’m not looking for somber and serious and deep all the time either. It’s just that in this condition, diversions aimed to take my mind off cancer haven’t soothed; they often simply annoyed me instead. And that just left me with guilt at being rude to friends wanting to help. The end result for me has been that I tend to withdraw into myself rather than actively push people away. All of which brings out needless worry in my friends... and the cycle goes on.

Laurie Todd, whose book I reviewed last summer, describes herself as “a nice, polite, caretaking gal” her whole life… until she underwent a mammoth fight for her life against appendix cancer and her health insurance company. She recorded this outgoing voicemail at the time: “If you are a doctor with the HMO, I would like very much for you to leave a message. If you are anybody else, I DON’T GIVE A RAT’S ASS!”

Other people I know have refused to take visits from people they were seemingly close to before their illness. And when they did allow others into the room, they sometimes shut them out with silence.

It’s hard to know what to do or say in the face of cancer. It dishes up more than its share of awkward moments. But it’s a good bet that perky can easily backfire.

Innocence found

When my older daughter was a little girl, the sight of homeless people on New York City streets reduced her to tears. She couldn’t understand why her parents wouldn’t drop money into all their outstretched hands, why we weren’t moved to rescue each and every one of them!

Street musicians, on the other hand, represented a form of begging she simply couldn’t tolerate, a target for her innocent outrage. “They can work. They should get jobs!” she would exclaim, not realizing that this form of street hustling was actually a kind-of job for them.

I love live music, but even the street variety has to measure up to a certain standard before I’ll take notice. Still, begging or no, I rarely ever found myself moved to drop money into a busker’s open case.

Well, this morning I did something I never did before. I bought a music CD from musicians in the subway! This group, The Ebony Hillbillies, performed regularly during the holiday season near the Times Square Shuttle entrance in Grand Central. Music has dropped off a bit since the height of the holiday-tourist season, and my commuting schedule is very erratic, so I wondered if and when I’d ever see them again. To my delight, they were there in their spot this morning.

This group is terrific! They’re a quartet of older black dudes who look like they’ve dropped into a foreign realm from a very faraway time and place. They’re not club performers and you won’t find them on Amazon.com, although amazingly, they do have a blog site! They sit there and play their hearts out into fiddle and banjo, washboard and bass. Their primitive vocals restore a level of innocence I thought was lost. This time around, I’m buying.

Boring

The other day, at my latest visit to the Cancer Center, I was discussing side effects with my team: my oncologist and a couple of nurses. They had me define what I mean by terms like “indigestion”, “heartburn”, “constipation”, “migraine aura” so they can quantify the severity for their records and compare them to other patients. Since I’m in a clinical trial, my chart gets reviewed by a lot of people, and they need to maintain clarity and consistency in their record-keeping.

After a while, my doctor got up, hugged me, and told me she loves me because I’m boring. I’m fairly certain she wasn’t commenting on my personality, or the state my life has devolved to – at least I hope that’s not the case! Rather, she’s very pleased with the lack of turmoil in my health profile.

In fact, most of the time when I think about my cancer these days, I think about it in the past. It’s not gone, and I really must guard against getting too far ahead of myself; but the truth is, I feel great. My symptoms and side effects are manageable and under control, and my energy is quite good. One day last week, I even dashed for a commuter train!

I still have months of chemotherapy left. We need to put the whole of the disease behind me, which means taking every last step to a completely tumorless scan… and beyond. And once that’s done, I’ll need to maintain a lifelong vigilance with periodic follow-up scans.

The adventure goes on… but without quite so much high drama.

Survivor guilt

This is going to sound crazy... sometimes I feel like a fraud, a cancer fraud!

Whenever I meet someone I haven’t seen in a long time, they comment on how good I look. I interpret that to mean I don’t look sick. As evidence, my skin tone is good, my weight is about what it was before my diagnosis, and I exhibit good energy. By all accounts, I look “normal.”

The truth, of course, is that I have a minimal and shrinking amount of cancer, and the drugs I’m taking don’t interfere too radically with my lifestyle. On top of that, since I’m self-employed, my lifestyle tolerates a good amount of flexibility.

That’s not to say this has been easy for me. The cancer ordeal is a rough one, a tremendous trial of body and spirit, a true nightmare of details, reordered priorities, and anxiety. Cancer robbed me of concentration and focus at a time when I couldn't afford an extended crisis in my life (Is there ever a good time?!), and even now, I'm clawing my way out of the trouble I managed to get myself into by having my attention diverted.

No, it hasn’t been easy, but I am alive. And I have prospects of living a long and healthy life from here on out. To be sure, I’m very happy about that. In addition, my life is enriched by the struggle, in some weird way. But I’m also dogged by guilt. Not everyone survives cancer. And cancer or not, many people are in much worse shape than I am.

For example, I’ve been following the progress of a man in his mid-forties who I used to know. He was young and smart and funny and competent when I knew him fifteen years ago. Now he’s recovering from a major stroke, brain cancer, seizures, meningitis, and the effects of countless drugs and treatments. According to his wife’s blog, his days revolve around many hours of physical therapy, speech training, acupuncture treatments, naps, and endless doctors’ appointments. He’s shown tremendous courage, and now, a year and a half into his ordeal, he measures accomplishment in the number of unaided steps he can take from his bed to his fish tank – about a dozen.

Another friend is suffering through his mother’s bout with lung cancer. She was recently diagnosed with advanced symptoms. Her treatment is so unpleasant it leaves her wondering how much of the “cure” she can endure. My friend and his family are reliving the pain they went through twenty-five years ago with his father in a similar situation.

Yes, everyone has their own particular form of torture to overcome; life keeps throwing tests our way. I've always thought of myself as a survivor and hope that's played a part in my struggle with cancer. Cancer is cancer is cancer. Still, it's wrenching and humbling to look around and see what other people are forced to deal with….

My team

I am so moved by all the kindness that has come in response to my last blog post! Sometimes I feel very alone in this campaign against cancer, but today is not one of those times! Comments on the blog site, private emails, phone calls: I can’t tell you all how touched I am by your concern and good wishes and your willingness to keep up with news of my progress.

The past half year has been a trial for me, for sure. But one thing that has emerged is a strong awareness of how blessed I am.

Thank you dear friends.

Fewer and smaller

I met with my oncologist today to discuss the results of Friday’s PET scan. As in the previous two scans, there are no metabolic hot spots at all, no signs of active malignancy. The tumors are continuing to shrink and disappear. The largest one is now 8 x 4 mm, down in size from 8 x 9 mm on the prior scan. Things are still moving in a positive direction; all indications are that the cancer is on its way out.

This report comes as a relief. I was nervous about dropping Genasense out of the mix of drugs. My doctor said she wasn’t worried about that, but admitted her concern about the long delay between cycles two and three. We seem to have weathered that storm.

But what does this mean in terms of how much longer I need to be in treatment? Today is the first day of my fourth cycle. Is this the final cycle?

“No,” my doctor said when I asked her this. “I want to see a clean scan first, and then we’ll go one more cycle after that to make sure we’ve gotten it all.”

I appreciate her intelligent, cautious approach to my health, even though I’m not thrilled to be taking these toxic drugs “ad infinitum”, as I heard her say to someone in the hall outside the exam room.

“Ad infinitum?”

“You weren’t supposed to hear that,” she responded.

She wasn’t condemning me to a lifetime of chemotherapy; just commenting that we’ll go as long as we have to in order to get rid of it all. That’s something I can live with!

Happy New Year!

What a strange thing time is. Minutes crawl by – in the case of my life this past year, minutes crawled by menacingly – but weeks zoom past. And like it or not, ready or not, another year has been consumed.

It’s the second week following my latest chemotherapy cycle and I have another PET scan scheduled this week. I’m nervous about it. I don’t know what to expect since I stopped taking Genasense. The last time I spoke with my doctor about it, she seemed unfazed.

“There’s no reason to think the results of this scan will be any less positive than they’ve been in the past,” she said. “It’s a clinical trial. We don’t know what the exact dosage needs to be in order to be effective.”

I keep reminding myself of that; the Genasense I took through the first two cycles may very well have completed its job. It boosted the effects of the remaining two drugs I take, that’s for sure. It’s likely the Abraxane and Temodar can continue to wipe out the small amount of remaining cancer without assistance. We’ll know more when the results of the scan are in and I meet with my doctor again on Monday.

And in the meantime, Happy New Year! I wish peace and great health to all my friends and family, all of you who have sent good wishes my way this past year. May 2008 be wonderful for all of us!