It’s real

There’s something about losing your hair…. Now that I’m bald, it’s hard to deny anymore that I am undergoing chemotherapy for cancer. It’s an undeniable and irreversible milestone.

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.

Ironic

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.

A New York scare

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.

Day by day

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.

Night terrors

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….

A peacock is better than an alarm clock

I’m on vacation. That may not sound strange to anyone but me. Fact is, I don’t take vacations. I do travel. And I do have fun with friends in far-flung places. But for the most part, when I leave my home, it’s for a purpose. I go to a conference, or a seminar, or a real estate site visit. I meet my friends on foreign territory and we share the experience, and food and drink. And in between the fun moments, I work.

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.

Questions for the doc

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....