Monday, March 31, 2008
I’m on my way into the City for yet another infusion of Abraxane. This is the part of the cycle that feels most like real chemotherapy. I mean, it’s all chemotherapy of course, including the nightly Temodar pills, the symptom management, and the daily entries in my drug diary. But this involves bags of intravenous drugs and most of a day in the Cancer Center.
I have clear, definable reactions to the Abraxane, in fact to the whole treatment cocktail: Pepcid, Kytril, Decadron; I know what to expect for the next few days in terms of my sense of taste, my energy, my hair, and my digestive system. At other times in the cycle, I can’t differentiate what is “reaction” from what is simply another ache, pain, or bodily expression of living and aging.
I’ve written about this part of the cycle before. Maybe I choose the topic because it’s easy to identify, easy to define, and therefore, easy to live with.
In any case, I’m halfway through the fifth treatment cycle. There are two more weeks of Temodar pills to take and on April 21st I’ll have another scan that promises to be very telling. It will either resume improving from where the last scan stalled, or it will continue along in plateau mode. It could mean changing the course of treatment if there is no further improvement, a development I don’t like to think about, though I can’t seem to help it. Currently, this treatment juncture is always near the surface of my mind.
Friday, March 28, 2008
A couple of months ago one of the treatment nurses asked me if I’d been experiencing neuropathy, tingling in the extremities from irritated nerves. At the time I wasn’t aware that this was a side effect of the drugs I’m taking. But I did have such sensations, and since that time I’ve noticed that the condition is nearly constant. Apparently, it can become severe enough that patients hurt themselves because they can’t feel their feet; they trip, fall, burn themselves in the shower, step on sharp objects. I’m nowhere near that point, but I am aware of the sensation most of the time.
At the other end of my anatomy, my head is giving me troubles too. It’s not physiological. At least, it’s not anything that shows up on my scans. My mood is decidedly down, my focus is off. I feel like I’m caught up in a giant Ponzi scheme that’s spiraling out of control; I’m continually preoccupied with my physical and financial health to the point where it disturbs my sleep. I don’t have enough work to keep my plate full, but I also don’t have the energy to market for new prospects. I'm at once hyper aware and trapped in a fog; it's all very worrisome.
I discussed this with my doctor and nurses at last Monday’s appointment. They suggested I might be depressed, (a distinct possibility given my family history), and prescribed an anti-depressant. I was reluctant to add a new medication into the mix, but decided to give it a shot and started taking Effexor the next day. It’s probably too soon to judge its effect on my mood since anti-depressants work in a cumulative fashion that can take a couple of weeks to gear up, but I’ve definitely noticed other effects that may or may not be from the new meds; things like dry-mouth, ringing in my ears, increased energy and agitation during sleep. I’ve been waking up two to three hours before the alarm every morning and sometimes can’t get back to sleep.
One of the most disturbing things about this cancer trip I’m on is that I’ve lost touch with my body and its functions. I used to pride myself on knowing what I was feeling and why. Starting with the day the diagnosis fell from the sky and crashed into my world, nothing feels normal. Symptoms come and go without announcing their genesis. Much as I love and trust my medical team, their response tends to be one of throwing more drugs at the problems. That’s not a surprise, given their training and perspective, but it leaves me feeling further and further from my self.
Wednesday, March 19, 2008
I saw a poster near a bus stop this evening for a very old animated movie, 101 Dalmatians. But to my confusion and surprise, I didn’t see a number in the title, I saw LOL – laughing out loud.
My favorite transformed words of all time were posted along a twisty highway near my house. The sign said “Survey Crews Ahead” and I read “Screwy Curves Ahead”.
The mind is such a jokester!
Tuesday, March 18, 2008
Our newly sworn in governor, David Paterson, in office less than twenty-four hours, was already dishing details of his sex life! The eager news hounds lapped up the fact that both he and his wife indulged in extra-marital affairs at a time when it seemed their marriage was headed for failure.
These two people have worked through their troubles, repaired their relationship, and reconciled. Having been married myself, I know this healing process can take monumental efforts of forgiveness and humility. But soul-searching and growth doesn’t make news; the comfort they sought in others when they couldn’t get it from each other does. David Paterson knows that secrets equate to dirt, so he offered up the information in a proactive press conference, before it became an issue, to fend off snoops intending to dig surprises out of his closet.
While I’m glad the governor appears to be an open and honest person, this move strikes me as naïve and, well, icky. The details of his wounded marriage are simply none of my business. I’m not sure I like his instincts; I’d much prefer to see him maintain the boundaries of his private life without inviting the press in. Which is much easier said than done, I’m sure. Just look at the many different ways celebrities handle being in the spotlight.
The only important question is: can he do his job?
Monday, March 17, 2008
I woke up this morning wishing there were a way I could phone in my lab work.
It’s one of those Mondays where I need to go to the Cancer Center only to have my blood drawn and tested. I ride the train into the City, walk the ten or so blocks to the doctor’s office, get stuck with a needle, turn around and walk back to Grand Central for the ride home. It’s a lot of effort for such a short process. If any of you have figured a way to do this via email, please let me know!
Today was special; New York displayed its finest “something’s happening” vibe in honor of St. Patrick’s Day. The inbound train was full of people wearing green t-shirts, some printed with very clever sayings like “Irish Whiskey Makes Me Frisky.” Grand Central acted as pre-staging area for uniformed groups of marchers to meet before heading over to their actual parade staging stations. And of course, Irish of all nationalities and ethnicities were out in full force.
Back in Grand Central, there were indeed bagpipers in kilts prolonging the festivities, taking advantage of the tremendous acoustics, and getting photographed with and for the tourists.
I love the way New York can party right in the midst of daily life.
Tuesday, March 11, 2008
New York’s governor has encountered a life altering event. Mr. Goody Two-shoes, or as he prefers to call himself, Mr. Clean, or Sheriff of Wall Street, has gotten himself caught in a moral bear trap. He was identified on tape setting up a tryst last month with an expensive call girl. This was not the first time; he said things indicating he is a repeat customer.
Eliot Spitzer is a man who set out to eliminate corruption in his current post as governor and previous position as New York’s attorney general. Whatever good he accomplished came at the high price of his holier-than-thou attitude. His campaigns to ensnare Wall Street transgressors frequently took the form of personal attack.
Immediately after the disclosure, the Governor issued a vague public apology to his family and constituency. He didn’t say what he was apologizing for, only that it was a private matter and he needed time alone with his family to work through it. The implication was that the issue is the sex scandal and the obvious victims are his humiliated wife and daughters.
But sex is not the issue. I personally couldn’t care less if this immature man gets his kicks from cheap (okay, expensive), empty, pay-as-you-go sexual encounters. That certainly makes a statement about his maturity and character, but he’s right, it’s a private matter; he privately chose that degrading form of expression, a highly self-destructive course of action in this case.
What is the issue then? In my opinion, it’s about his ego. In his quest for power and recognition, he broached all boundaries set up by others and pierced their public displays of propriety. In proving them culpable, one expects Spitzer to hold himself to the higher moral standard he demands of others. The surprise is he has set himself above the law, in fact exempted himself from it. He placed himself above the morality he publicly held dear. He lived a life of hypocrisy.
"He has to step down. No one will stand with him," said Rep. Peter King, a Republican from Long Island. "I never try to take advantage or gloat over a personal tragedy. However, this is different. This is a guy who is so self-righteous, and so unforgiving."
I found this quote on the internet amid all the reporting and speculating about Spitzer’s sex life and possible illegal doings. Peter King got to the heart of the matter. It was my first thought also on hearing the news: How can anyone in Albany continue to work with this man knowing what a hypocrite he is?
One further thought: I know from personal experience that life can change in an instant. It happened to me with my diagnosis last June. It happened to Eliot Spitzer earlier this week. His situation has been brewing quietly for many months, as mine was also. Maybe either one of us could have exerted more control at certain times to keep from getting into such deep trouble. Or maybe both events were inevitable, given the personalities. All I know is that once in this position, it’s terrifying. You look out over a canyon you can easily fall into, and it takes all your strength to keep from slipping at the edge. You wake up sweating in the night, wishing you could take back the last few moments. But there are no do-overs. We just have to keep going.
On some level it’s gratifying to see that the rules of human behavior apply even to the most powerful, living the most perfectly crafted lives. But I can’t help it; much as I dislike the man and his behavior, I feel very sorry for him.
When I was with my doctor yesterday, we talked candidly about treatment, death, even our shared dislike of the media. I opened the topic by asking about presidential candidate John McCain; I saw an interviewer bait him with a question about his run-in with “the most lethal form of skin cancer.”
“Did he have melanoma?” I asked her.
“Yes,” and she spoke briefly about his publicly disclosed diagnosis. “The NY Times asked me to comment on it, but I hadn’t seen his medical records. I refused to speculate about it for them.”
I was so proud of her. I know she has an opinion; she has an opinion about everything! And she’s a melanoma specialist. But she has way too much integrity to get dragged into an event where the news media generates the news.
In fact, that happens most of the time: News media simply can’t stand to sit still. If nothing incendiary is happening of its own accord, they stir something up so they can report it. It truly infuriates me.
I wake up to news radio in the morning. It’s better than a buzzer alarm because it doesn’t stop if I happen to keep sleeping, and it’s really noxious noise. Eventually I have to get up, and in the process, I pick up on the really “big” stories of the day. Often though, I find myself yelling back at the announcers. I can’t stand their smirky innuendo.
Correct me if I’m wrong, but it seems to have gotten a lot worse in recent years.
Monday, March 10, 2008
I had a really satisfying talk with my doctor this morning.
“How are you doing?” she asked.
“I’m impatient,” I said. “I mean, this last week has been hard. The business of no news from the scan… it wasn’t supposed to happen like that. I want this to be over. And at the same time, I realize there are lots of patients who don’t have that option. It appears I’m not dying. I should be more grateful. Guilt, impatience, disappointment: It’s all making me crazy.”
She looked piercingly at me and said, “This is melanoma. There are no guarantees, nothing to take for granted. I’ve seen people with a huge amount of disease get dramatically better, and I’ve seen some who look like it should be manageable, and they suddenly die from it.” She talked about the way patients get lulled into thinking that a course of action should simply continue, forgetting that melanoma has its own mysterious set of rules. She talked in the third person about how people get disappointed when a positive trend suddenly stalls; how they forget they can't count on it.
I didn’t feel scolded. It wasn’t meant as a scolding; it was a wakeup call. “You’re right,” I said. “When I first got the diagnosis I was overcome with worry: Will I die? Will I be able to take care of myself? I had to remind myself to stay focused in the present. But it’s just as important when things are going well to keep from getting too far ahead of myself.”
And then, “You mean, my reaction isn’t unusual? Other people have this jumble of feelings when this happens?”
“Oh yes,” she said, and after a pause the conversation turned personal. “I felt the same way when I saw your scan report. I had expected it to continue and I was disappointed when it had nothing new to offer. But then I wanted to kick myself; what was I thinking?!” She was no longer speaking in the third person. “I had to remind myself there are no givens with this disease, nothing to count on. I start thinking ‘hey, I’m raising the cure rate to 50%,’ but then I have to remind myself not to get cocky. Patients plateau. Maybe their bodies become resistant to the drugs, for whatever reason. If that happens here, we’ll go to some other treatment. We’ll just keep going on... and be grateful we have the option.”
I’ve said it before: My doctor is a remarkable woman. She’s compassionate, kind, and honest, in addition to charachteristics you'd expect, like intelligent, analytical, and tenacious. I’ve never met another doctor like her. More than a couple of people on her staff have remarked to me that they remain in their positions because of her. They feel a loyalty to her and the program she’s built up.
She talked some more about the people she’s hiring, the renowned program she’s developing, the papers she’s happy to co-author, and the staff she’s eager to share that honor with. She’s really good at research, great at getting things done. She’ll nearly double the size of her program by the summer and take a more supportive, administrative role. She’ll cut back her patient involvement, but I hope that doesn’t mean I’ll lose touch with this loving, lovely woman.
She handed me my chart to take to the treatment floor, we hugged, and she thanked me for the "therapeutic talk." She is such an anchor for me!
I walked quickly up Park Avenue, in stride with a woman dressed in an expensive sweat suit. I was hurrying to catch a train; she was hurrying to dry her nails. Her bright red, newly manicured fingers were outstretched, even as she carried a tiny shopping bag that probably held her keys and wallet and glasses. She’d done this before; she knew how to prepare. Nothing fancy; it was a bag she could use to carry essentials without having to dig around in a small, enclosed compartment that would ruin her paint.
She was also hurrying because she was cold. It was 40° and she was nearly barefoot! It was apparent she’d also had a pedicure; the flip-flops she wore freed her matching bright red toes to dry in the fresh, crisp, nearly frigid New York air. They don’t call it concrete canyons for nothing! The cold, biting winds sweep down between buildings and along side streets, ensuring that the hard concrete sidewalks remain equally cold and biting.
She hesitated for a step or two at the red light, but didn’t want to stand and accumulate more cold. Her impatience got the better of her and she turned to cross the wide divided boulevard before I got to Grand Central. I was sorry to see her go.
Thursday, March 6, 2008
I had one of those dreams last night. You know the sort: you find yourself in a familiar but very old environment, something is about to happen and you’re totally unprepared. It might be high school or college and you’re on your way to a test, but not only did you not study, you’re not even sure you attended any classes! Or maybe you find yourself back in elementary school, sitting under a desk in your underwear, wondering how you’ll get through the day without being noticed.
Last night I dropped my daughter off at school and someone reminded me of a PTA meeting I’d promised to attend that was about to start. I drove straight to the host house, dropped my coat in an empty room, and wandered around noticing parents I hadn’t seen since my pre-empty-nest days. I wondered why some of them looked at me oddly until I remembered I’d forgotten my wig. I was wandering through a crowd of people who didn’t know I had cancer, announcing the fact with my patchy, scraggly, white, cellophane-like hair.
When I have one of these very vivid dreams, I like to lie in bed and hold onto the feelings it evokes. I think that helps me better understand my waking emotional landscape. This dream carried a heavy sadness I don’t like to indulge when I am awake. It underscored my self-consciousness, my loneliness, and even a sense of guilt.
I have cancer. I am alone and frightened. I have wonderful people who think about me and care about me and know the full extent of my health situation through things I’ve written in this blog. But the truth is, this adventure brings a very painful sense of detachment. Some of you have said: I don’t know how you do it. Well, I don’t know how I do it either. I mean, mostly I just put my head down and plod through day by day. But sometimes I look up and try to see further than next week, and I get really scared.
Head-down-plodding gets you only so far. I’ve applied all my competence to getting through the cancer crisis and it seems to be working. But in the process, I’ve neglected other things. My life feels like a big chaotic mess to me right now, and that’s the part I don’t know how I’ll get through.
All this from a dream.
Monday, March 3, 2008
I met with my doctor this morning to go over the results of last Thursday’s scan. As I was sitting in the exam room, waiting for her to show up, she popped her head in and gave the “thumbs up” sign. “You’re good to go.”
“Does that mean it was a clean scan?” I asked.
“No, stable. We’ll give it another cycle and see where we go from there.”
I must have looked at her quizzically because she said “Stable is good. I just have to finish up with another patient; then I’ll come back and let you know what my thinking is about this.”
She’d said “Stable is good,” but I heard “but…”.
When she returned, she explained that frequently patients plateau for no apparent reason. The scan was good in that there was nothing negative about it, no hot spots, no new growth.
No news is good news, one might say. Only thing is, there was no change, so therefore we can’t infer anything about what is happening or why. We have to wait for the next scan for more information.
Tonight I start taking drugs for my fifth chemo cycle. In eight weeks, I’ll have another scan that should fill in the blanks of this cancer puzzle. If the remaining tumors resume their shrinking-and-disappearing act, we can proceed with the course we’re on. If the next scan is a continuation of the plateau, my doctor may want to pull me out of the study and change the treatment.
“I don’t mind taking you off study, since you’re just taking Temodar and Abraxane, which are standard chemotherapy drugs we can always go back to. If we switch treatment, it will be to an immunotherapy, not, strictly speaking, chemotherapy.” And here she rattled off some multi-syllabic medical terms to describe the drugs I’d never heard of.
We talked for a while about what that other treatment consists of. Basically, it seeks out all foreign elements in the body and stimulates immune system reactions to them. Her findings are that the drug is even more effective after taking Temodar. There could be side effects, but some people have no adverse reaction at all.
I must say, a lot of this went right over my head. I really didn’t want to hear about new forms of treatment. I’m familiar with the one I’ve been following since last June. I want it to be over, not continue down another path that would extend it possibly beyond the summer. On the other hand, I’m grateful that she is comfortable sharing her thinking with me.
“This is all theoretical,” she said. “I don’t know exactly what to make of the results, so I’m already thinking two steps ahead, but so far, everything is good.”