On the Santa Train

Last weekend I took a ride a short way up the Hudson River with my sister, her daughter, and my niece’s three young daughters. The MTA event involved a festively decorated commuter train, goody bags for the kids, and a Santa Claus and elves who made their way through the train cars to talk with all the children. The trip started in Grand Central Terminal and ended up back there in less than an hour. The anticipation beforehand was very exciting for my grand-nieces, and the actual trip was a lot of fun.

Now, I realize that Santa is not everyone’s cup of tea because the myth doesn't square with all belief systems. But I long ago stopped seeing Christmas as a religious holiday. More than anything else, it's an extended commercial ploy to enforce giving, and buying. I find the commercialism and crowds of the season nearly intolerable; all the hoopla makes me quite cranky.

Apart from my humbug air, however, it's still absolutely magical to be able to accept that one man can make his way around the world delivering gifts to all children in a single night. It’s only for the young, and what a delight it is to see through the eyes of those young believers. In fact, after six months of dealing with cancer, I long for my own Santa Claus!

My cat

I glanced over from the exercise machine this morning and saw my cat slinking through shadows in another part of the basement. When I finished working out, I sat on the couch to watch the end of the DVD I use as a treat to get myself on the exercise machine in the first place. I noticed the furry, speckled ball curled up on the next cushion and reached out to pet her.

Problem is, my Kitty's been dead since last April. The ball of fur sitting next to me was a hat I’d been wearing to warm my bald head before I started exercising.

Now, this was not a grim-reaper-and-a-bright-white-light moment. I’ve been sensing my cat’s presence for the past eight months. It doesn’t surprise me that my house has absorbed her rhythms and plays them back to me on occasion. She was a deaf, forgetful, old lady the last few years of her life, but she filled my home and my heart.

I could always count on a loud scolding from her when I walked into the house after being away. And there were frequent signs that she romped and cavorted, even when I wasn’t home. She loved to curl up in my lap… along with my laptop, or perch on top of the printer while I worked, or doze in one of the many baskets she loved as much as I do. She sat in a window and watched every step I took to the mailbox and back. She never ate table food… except for ice cream which she licked daintily from a spoon. And she always slept in my bed.

She was my friend, my soul mate, for nearly nineteen years. I was with her when she died and it was one of the saddest moments of my life.

Good heavens, I miss that cat!

If you see something, say something

Several years ago, when my daughter was in junior high school, I confronted a couple of boys fighting on the street in our small, upscale, suburban town. A circle of kids surrounded the two as one pushed the other, goading him to action. Both were big for their age, nearly six feet tall, bulky and flabby and not yet comfortable with the size they’d expanded to. They were still, truly, boys.

I walked up to the one doing the pushing, stamped my foot, and shouted as sternly as I could, “Stop it!” They were startled, gave a “who me?” look, and pretended there was nothing really going on. My daughter, in the group of onlookers, was mortified.

That incident didn’t scare me. I never felt at risk. I was simply a mother, doing my motherly thing. And that was, after all, Chappaqua.

This evening, as I followed the heavy crowd of rush-hour commuters to a waiting subway shuttle, a young man in front of me and walking faster than the rest of us, dropped something. It sounded like a phone, so I bent down to pick it up for him. It wasn’t a phone. It was a knife. And just as I recognized it as such, he turned back, swooped down, and picked it up himself.

I was in Times Square, where there are, thankfully, many people, including many police officers. I walked up to the nearest pair of transit cops and told them what I’d seen. One of them went off to confront the young man, who by this time was on the next platform.

Then I got scared.

This man had a similar, young-for-his-size air; big, burly, his pants in danger of losing the struggle with gravity. And he stared right at me from across the tracks as I pointed him out to the officers. There is only one shuttle at a time between Times Square and Grand Central, and as I boarded, I started having visions of him waiting for me at the other end of the line... with his knife.

This incident worked out okay for me, a false alarm. I’m on a train, on my way home to my safe suburban haven. For the most part, I’m not fearful in New York, although that hasn’t always been so. But this incident hit me in a vulnerable spot. It reminded me that no matter how protected I feel in my own skin and environment, I can’t account for the unwholesome impulses of others.

Not to sound paranoid, but no matter how smoothly things seem to be going, there really can be dangers lurking in the shadows.

Hair today, gone tomorrow

Nearly two weeks ago, a couple of days after my last Abraxane infusion, my skin was very tender to the touch, particularly on top of my head. It was a symptom I remembered from the earlier treatment cycles, and I took it as a sign that my scalp was preparing to give up its recent crop of newly grown hair. But it didn’t happen.

I met with my doctor this morning and mentioned that I still have hair. Her reaction amounted to “Go figure.” She told me that another of her patients just went through his entire first cycle without losing his hair. Another medical mystery, and from my point of view, not an unwelcome one. It was easy getting used to having hair again.

Tonight I sat down to my computer and noticed short white hairs all over the keyboard. I tugged at locks and they came out in my hand. Oh well. Once again, I’ll be bald by the end of the week.

The pictures speak for themselves

It was a wonderful Thanksgiving; a small family gathering in upstate New York, filled with warmth and hugs and lots of good food. My taste was off, but it was still delicious! And it was a rare opportunity to enjoy both daughters at the same place and time.


I am thankful for the opportunity to go natural....

What does this mean?

Recently, when I asked my doctor about my allergic reaction to Genasense, I remarked that the drug company might want to do some additional tests to try to identify some characteristic in me that provoked this reaction. Surely, now that it’s happened once, this type of reaction will occur again. Is there more they can know about how to predict its likelihood? Is it as simple as the fact that there are no longer any active tumors in my body, no more Bcl-2 protein to attack?

She thought for a second, then related an experience with one of her earliest study subjects that refutes my last question. The patient has remained cancer-free the entire eight years since the study. The drug committee’s protocol at the time called for eight cycles; the patient’s cancer was gone after four. It was a new study then. My doctor and her patient were both nervous about stopping treatment, so they continued on for sixteen cycles with no adverse reaction to the drug.

So there you have it: one patient with a life-threatening allergic reaction, one non-cancerous patient tolerating the same drug for over two years. Is there any information in that? Is that even a meaningful sample? My experience may be so rare as to be of questionable value, just a red herring.

This may be the end of it. “Everyone’s allergic to something,” my doctor says. I only hope that my altered program continues to produce good results. But I’m trying real hard to keep anxiety out of the equation.

Overheard

I couldn’t help but hear the conversation on the next couch in the waiting room. The man had just gone off, rather cheerily, to the phlebotomist’s office to have blood drawn. His wife stayed behind to talk with a couple of friends they ran into there. Her tone was a bit desperate, pleading, disbelieving. It was all about the patient.

“He looks like he’s lost weight, but otherwise, he looks pretty good,” one of the friends commented.

“He looks thinner, but his weight is the same. He doesn’t sleep. He says he doesn’t sleep all night.”

“When that happens to me, I eventually doze off,” said Friend. “Is he in pain?”

“Yes, and they can’t tell us the source. The doctor says things are the same, but they can’t say where it is, why he’s in pain.”

“He says he’s full of anxiety,” Wife continued, “and the thoughts wake him at night and he can’t get back to sleep. Then he spends the whole day in bed. He doesn’t get dressed. He’s showered once in three weeks. He doesn’t come downstairs except to eat. He only goes out to come to these appointments. When we’re out, he comments how good the fresh air feels. I encourage him to go out and take walks other times, but he just stays in bed.”

“It sounds like he’s depressed,” said Friend.

“Yes.” Wife was certainly willing to accept the diagnosis, but she wasn’t finished rattling off her catalog of complaints. She didn’t know what to make of him, so she repeated his transgressions, louder and louder, maybe in hopes of scaring off the offending signs of anxiety and depression.

I can certainly relate to that patient’s feelings. I’ve been there. In fact, I never know when the anxiety is going to overtake and kick the wind out of me. I can relate to his wife’s reaction too. I’ve endured no end of criticism from the Wife who sits inside my head suggesting I exercise, seek out more client work, organize and finish my own paperwork, just do something. But it’s not that easy. There’s always the monster waiting around the corner, and he’s not at all shy about taking over my mood.

I wonder sometimes if it’s easier going through a life-threatening event like cancer alone, or with someone else close by. I can certainly see the downside of being by myself, and I’m very grateful for the many people who have reached out to me with kindness and made themselves available.

On the other hand, I’ve seen too many partners lash out at each other. Both sick and non-sick feel helpless. One or the other nags, and one or the other runs away. It’s a very sad and complex problem with a lot of wrong answers. The more people there are involved in the core of the situation, the more expectations get in the way, and the more opportunities exist for things to go bad.

The right answer is that there is no right answer. It's just a matter of facing this thing day by day, and trying not to hurt too many people in the process.

The cruelest cut of all…

“I can’t believe Thanksgiving is next week already,” my daughter commented last night after we’d talked a while about our plans for that day.

Thanksgiving is my favorite holiday. There are no religious or political themes to wade through, no overblown commercial campaigns to legislate generosity. It’s simply a glorious excuse to share hugs, warmth, and good food with loved ones.

“Next week? For real? Oh no,” I groaned.

“What’s the matter?” she asked, noting my change in tone.

I’d already done the math. “This coming Monday I’m due for my first Abraxane infusion. For about five days after that, food won’t taste like much of anything. Thanksgiving falls right in the middle of that.”

It’s about the people, I keep reminding myself.

“And you’ll take home plenty of leftovers,” my sister generously offered when I made the comment to her afterward. Now, there’s a gesture to be thankful for!

Fix me

I heard her complaints from the other side of the curtain in our shared hospital room: “I wish someone could pick me up and put me into a spot where I’m comfortable.” Her rants went on and on. “I won’t eat until my stomach clears out. I feel so impacted. I’m in pain.”

At times she sounded condescending. “You don’t understand,” she’d say to her nurses and aides as she refused medications, foods, drink, and treatments they offered that might ease her condition. Other times she was simply angry, augmenting her stubborn refusals by chastising everyone who tried for failing to help her. Too weak and sore to move herself into a comfortable position, she begged over and over, “Please help me sit up, just once more.” But then she’d scream, “You’re hurting me. You’re not doing it right.”

There’s not much in this world worse than constipation; unless it’s someone else’s constipation. There in the next bed, separated from me by a thin curtain, she bargained continually, whining, complaining, promising to be good if someone would only help her. “I can’t,” she whined over and over, and almost at the same time, “Help me.” Is she really saying, “Do it for me”?

“I can’t; I can’t. You try to feed me and I can’t eat. I Don’t. Want. Anything.”

Her private nurse attendant tells her she has to eat if she wants to eliminate. And she needs to eliminate if she wants to go home.

“I don’t want to go home,” she yells. “I want someone to hold my hand,” I hear her say under her breath. “Why won’t they just leave me alone?! Can someone please tell me why they won’t leave me alone?”

I’d been listening to this all day and watching the nurses scurry reluctantly in and out in response to her buzzer-ringing and hollering. They’d do their job perfunctorily and leave as soon as possible; which only made her more angry and ornery and abusive. I could no longer remain silent. I untwisted my IV line, pulled the pole along behind me and stepped behind the curtain.

“I’ll tell you why they won’t leave you alone. You’re in a hospital. It’s their job to try to get you better. And if they can’t make you better, they try to make you more comfortable. But you have been very resistant to their help, which only makes them want to get away from you. If you’re going to get more comfortable, you have to participate to make it happen.”

This is the first time I’d gotten a look at this woman all day. She is gaunt, emaciated, worn out, used up. Her belly is hugely distended. She embodies my memories of cancer from childhood, when “cancer” was one disease and it invariably ended in death. Initially her eyes were downcast and lifeless, with a heavy touch of guilt. She knows she's made my hospital stay less than pleasant; she's made frequent remarks how embarrassed she is about what the person in the next bed must think of her. Now I'm standing in front of her and maybe I'm going to dish her anger back at her.

“Your best bet is to go along with the program here, then get yourself home where you’ll be in a better position to be left alone. Have you looked into hospice?”

“No,” she said, “what’s that?”

I told her the little I know, which is that a person can have care in-home or in-facility, care aimed at making patients comfortable at end-of-life. She could probably get more information from the nurses.

She opened her eyes and looked at me directly. I’d dared to talk about her death.

“This is not fair,” she opened up. “Look at me. My stomach hurts. I can’t sit up. I can’t lie down. I can’t eat. I can’t get comfortable. I’m scared.”

“I understand ‘scared’,” I commiserated, “I have cancer too. But you’re going to have to stop saying ‘can’t’. No one wants to do anything for you if you don’t make an effort to find things that work. You have to let them know what you want and you have to let them try to provide it.”

“You’re right, it’s not fair,” I continued, “But it’s what is. There are a lot of things that aren’t fair.” And I related the story of the man who was struck by a car and killed in my hometown while walking on the sidewalk this past summer.

“I’m not afraid of death,” she said. “What scares me is what I leave behind. It’s having people see me this way, my daughters, their babies. I don’t want them to see me and remember me this way. It’s humiliating.”

“I understand. But you have to remember that what’s particularly unfair about death is that it robs the people left behind of someone they love. If you refuse to see them now, you’re taking away an opportunity for them to see you and love you and connect with you while you’re still alive. It’s awful to lose your mother. Let them have you while you’re still here… for them.”

I hadn’t wanted to touch this woman. Her appearance was scary, her demeanor hostile, hurtful, demanding, unforgiving. But she was looking at me directly through most of this interchange. I’d connected with her and I could see she appreciated it. She motioned for me to sit on her bed and reached out for my hand. We sat there, holding hands and understanding what it means to be in the cancer club.

My contribution to the research

I won’t hold out for suspense. It didn’t work.

I got to the hospital mid-morning, checked in, then waited in my room for all the pieces to fall into place. The nurses arrived with drugs and equipment, and started up the Genasense pump about 2:30 this afternoon. Within minutes I was consumed by heat, nausea, tight throat – the same reaction as the past two Mondays. This time was particularly intense. I had back spasms. It felt like I was hooked into an electric socket, shocking me randomly to the point of nearly doubling up.

Two of my regular nurses from the cancer center were at bedside, along with two equally wonderful nurses who are on staff at the hospital. All were concerned. All were prepared. I’d had infusions of steroid and Benadryl before starting the Genasense. Once the reaction started, I got additional doses of both plus oxygen. Aftershock waves continued intermittently for about an hour, and by then, the episode was mostly over. The Benadryl knocked me out. I slept.

I’ll see my doctor in the morning and lay out the path. We’ve talked about it already, so I know she intends to proceed with just Abraxane and Temodar. I start taking one Temodar pill each night for six weeks, starting tonight. I’ll get my first Abraxane infusion of the cycle next Monday, as if I’d taken Genasense all week.

It’s a little scary for me to deviate from the plan that was working so well, but I have no choice. The cure can kill me.

Genasense targets Bcl-2, a protein in melanoma cells that prepares them to live forever. Once they’ve been altered to accept cell death, the Abraxane and Temodar come in to do the dirty work. My last PET scans revealed that the tumors are no longer active, no longer alive. It’s quite possible that Genasense is superfluous at this point in my treatment. It’s unsettling, but not an entirely unwarranted proposition.

It may sound a little hokey, but painful as this experience has been, I'm actually glad to have an opportunity to add something to the body of knowledge. The research study will go on, and I'm sure this reaction will surface again, except they will have a clearer idea how to handle it as soon as they see it. My personal involvement is my number one priority, of course, but the study is much bigger than me.

Feathers

“Wanna see something funny?” I asked my daughter recently while lifting off my wig.

“You’re covered with fuzz!” she exclaimed. “How cute.”

It’s been several weeks since my last Abraxane infusion, the drug that caused me to lose my hair. My head is now covered with hair, feathery and white. It’s not long enough to really keep me from looking bald, and there’s a good chance I’ll lose it again. But in the meantime, it’s pointing the way to what I have to look forward to.

Sometime in the not too distant future I have a decision to make. I would so love to be free of the expensive and time-consuming color habit I never wanted to start in the first place, but once started, I’ve faithfully maintained for the past fifteen or so years. I’m genetically disposed to white hair, but it’s something I was never prepared to welcome on my head. It reminds me too much of my grandmother, who had the snowiest of snow white hair from the earliest I remember her. Now when I see pictures of my young grandmother in her mid-forties, I’m amazed at her young face. That white hair was such a striking statement of “old” that I never got past.

The wig I wear is very close in color to what my hair salon came up with for years. It’s a good match for what my color used to be. But as we age, our skin tone mellows. Mother Nature is the perfect colorist and what she has come up with for me now is white hair to go with my toned down skin. When I see myself bare-headed in the mirror I’m struck with how the halo of white actually brightens up my face.

But then there’s the “old” thing. White hair will always seem old. Am I ready for it? Such a dilemma!

I’d like to post a picture here, but I’ll give it a couple more weeks to grow in before I have another Abraxane reaction and it starts falling out again. Maybe my friends can help me decide. Although, truth be known, who's actually going to tell me I look old?!

Freak-out

A friend sent me an article announcing Genta’s completed appeal to the FDA in clinical trials with CCL (Chronic Lymphocytic Leukemia). It was a typical cut-and-dried news release until I came to the section on “Safety” where it mentioned casually that nine patients experienced "adverse events that resulted in death" in the course of treatment with Genasense.

You can call me naïve if you want. I realize I'm in a potentially life-threatening situation, but I guess I didn't actually think I was in danger of dying until I saw the word "death" in print. That scared me.

My untrained mind connected my severe allergic reaction with the adverse events in the article. I was under the impression that only a handful of patients had this kind of reaction and nine deaths then seemed like a huge percentage of the allergic population.

But it seems I may have mixed apples and oranges and jumped to an unwarranted conclusion.

I emailed my doctor with my questions and concerns and a few hours later received her thoughtful response:

“You cannot apply this to patients with solid tumors. Patients with CLL undergo tumor lysis which can cause kidney failure, heart abnormalities from the rapid release of potassium and they already have a severely impaired immune system with the CLL, so many get very odd infections. You are not this population. …. None of these deaths were from “allergic reactions” they were from “adverse events”. None of the reported info pertains to you.”

She cited her own article on a study in which no melanoma patients in the group of 771 died of drug related complications, and went on to give me an out: if I am not comfortable with the proposed plan of treatment, I can choose to forgo Monday’s in-hospital Genasense infusion and continue with Abraxane and Temodar alone.

What I appreciate most about this woman is that she takes me and my concerns very seriously. She always answers my questions patiently and in language I can understand. She is a treasure!

I will be in the hospital Monday morning for treatment.

Plan B and a half

I got to the cancer center this morning with computer, clothes, and personal items in tow, ready to start pumping Genasense into my mediport IV and then head for the hospital. As I waited in the exam room for the pre-treatment meeting with my doctor I could hear bits of conversation in the hall. They were talking about me. Things were not going to proceed as planned….

There were a number of reasons to pull the plug again today. Top on the list were the hospital arrangements. It seems there was no guarantee of a room, availability going first to ER patients who are stacked up in hallways as I witnessed firsthand two weeks ago. In addition, the oncology nurse stationed at the hospital is on vacation this week. Although the floor nurses are good, they are each responsible for six patients, whereas the oncology nurse is familiar with and devoted to the special needs of my situation.

There were additional issues, questions posed by the cancer center nursing staff. They didn’t like the idea of starting treatment in one place and moving me to another venue. What if I had a reaction in transit? Who in the hospital has experience with a pump and mediport and can start my IV? Where would they prepare the drug and pump, in hospital or in the cancer center pharmacy? And how will they get the drug to me?

So we’re making progress. We still have a plan, but we also have another delay. I have another week to feel good and energetic and they have another week to work out the details. It’s a bit disappointing to be prepared to move ahead and then have to wait, but it’s not anywhere near as bad as not knowing.

I will get a phone call Sunday telling me when to show up at the hospital Monday morning. Two of my regular nurses will be there to help get things started, a nurse supervisor from the infusion floor and the nurse program coordinator in charge of research. And we should know by Tuesday how well the pre-treatment works for me.

Plan B

After a week of keeping my mind disengaged during awake-time with PacMan and Sudoku online, my current mind-numbing techniques of choice, and nights of poor sleep, I sat down to talk with my doctor this morning and started to cry.

“I don’t usually cry about this, but I’m so scared,” I confessed somewhat apologetically. “What was saving my life is now threatening to kill me.”

“It’s okay. I have a plan.”

I knew she would, of course, but the wait had seemed interminable.

She spoke with the Genta research representatives late last week. They were, in fact, in New York to attend two of her presentations to cancer professionals on this research study. When she told them about my experience they weren’t overly surprised; they knew what to do. My doctor has administered over half the Genasense drug taken by melanoma patients in this country and had never encountered this reaction with “solid tumor”, but they had seen it in a handful of Chronic Lymphocytic Leukemia (CLL) patients in other trials. Their method of dealing with the situation is to “pre-treat” the patient with a high dose of a strong steroid that counteracts and prevents the allergic reaction. When they pre-treat, the patients go on to receive a full week of IV infusion without life-threatening side effects.

I looked at her skeptically. “What if I go home and pass out on my kitchen floor when the steroid wears off?”

“That’s why I want to keep you under observation for a couple of days,” she said. “We’ll start the treatment and then you can go to the hospital for an overnight stay, maybe two nights. If something happens, it will be in the first twenty-four hours. I want you here in the cancer center most of the day, where we know your treatment history, and I want you there after that, so they can monitor your blood pressure and condition.”

Which ruled out staying at my daughter’s apartment.

“This begs the question in my untrained mind. Do I possibly have leukemia?”

“No chance of it,” she said. “The major symptom of that is a very high white blood cell count. We monitor your blood all the time and your counts are normal.”

“It’s a little scary, but I’ll do it if you believe it’s worth a try.”

“The worst case scenario is that it happens again, we have to scrap the Genasense, and we continue with Abraxane and Temodar alone. In your case, there were no live tumors on your last scans, so I’d be pretty comfortable with that option. And if you have to abandon the Genasense, they’ll still keep you in the study,” which means they’d continue to follow my progress, and pay for drugs not covered by insurance.

So she sent me home to pack a bag, and we scheduled Day 1 for tomorrow.

Rough week

I don’t mean to bludgeon any of my dear friends with this, but it’s been a bad week for me. I can’t seem to keep my mind on anything; not the work, not the fun stuff. This hammers home the point for me all over again that the worst state of all is uncertainty. Not knowing, not having a plan… it robs concentration. It’s deadly demoralizing.

I had a gynecological exam this afternoon… yes, another doctor chasing down the basis of yet another set of symptoms, or maybe more side effects. My mind wandered as I reclined on the examination table, and all of a sudden I found myself wanting to cry and wishing for my Mommy.

It’s funny how you never outgrow that urge to be cradled.

Dyslexia

On occasion I like to remind myself that I’m a computer expert. Computer dinosaur may be more like it, since I’ve been involved with all manner of hardware and software since the mid-sixties. I know my way around a technical problem; that’s a big part of my life, and one that gives me a lot of pleasure. But there are a few unexpected things that always give me trouble.

Maps, for example. I need to turn a map upside down to read it if I’m heading south. And telephones. I can’t ever seem to get the hang of call-waiting and more often than not, I disconnect one party or the other… or both. And worst of all, the metric system.

Now you’d think the metric system would be easy for my logic-based mind to grasp. After all, it’s very easy to multiply and divide by ten. But in addition to logic, my brain runs on images. Inches and feet and quarts are part of my visual vocabulary; centimeters and liters are foreign.

I mention my trouble with the metric system because I noticed an error in a recent blog entry. I said that my tumors had shrunk from 1.6 to .9 cm, when in fact that should have been millimeters, not centimeters! That’s a big difference. The tumors started out quite small and they are being reduced to dust at this point. But .9 cm is nearly half an inch!

I mentioned this error to an aunt the other night in conversation and she was very relieved. Unlike me, she is not metric-challenged and had been concerned about the size I first reported. I changed the blog entry, but I know there are others, like my aunt, who had already read it and haven’t seen the correction.

How can this be?

When I was mid-attack yesterday, throwing up, flushed with heat, throat tightening, and nearly passing out, I asked my doctor, “How come this is happening? Why now?”

She said that allergies can develop over time because the body builds up antibodies that eventually reach a critical mass. Also, there may be reactions along the way that don’t register as such. For example, early in my first treatment cycle I had an episode where I nearly passed out in Grand Central. They’re rethinking now that it might have been an unregistered reaction.

I didn’t end up in the hospital ER yesterday. Forewarned is forearmed. Everyone was prepared to notice symptoms. The results of the previous week’s CT scan ruled out an embolism; if it happened again, it would be a pattern implicating allergy. My doctor wrote orders in advance for steroid and Benadryl; the IV bags would be there if needed.

I am so out of sorts today. It’s been very difficult to keep my mind clear and focused. I’ve been trying to attack my mountain of paperwork, but I keep getting distracted.

I called the oil company this morning to report that my heat didn’t go on. I went downstairs and pushed the furnace’s red button to reignite the pilot light, but nothing happened. They scheduled an appointment for later in the day, commenting that it might take a while since there were a lot of service calls for heat problems.

When the heat guy finally showed up, he walked to the thermostat first, turned up the temperature, and without missing a beat, the heat went on! All day I thought the furnace wasn't going on because the pilot light wouldn't start, but it was because the thermostat was set too low. Oy vey!

Mystery unraveling

It happened again….

I went into the City to start the third treatment cycle after my aborted attempt last week. Everyone seemed a little nervous.

I talked first with the nurse program coordinator and with my oncologist, as I always do on infusion days. They were particularly interested in how I’ve felt this past week. My doctor was now leaning toward the theory that my freakish episode last Monday was the result of a bolus of Genasense getting pushed too fast into my system. She wanted to exercise caution and have me stay in the center for observation for about an hour after starting my IV pump. That was okay with me since I had my computer with me, as I always do in such situations.

I went to the treatment floor to start my infusion. Everything went smoothly. I ate my lunch (not pastrami) while waiting for the drugs to come up from the pharmacy. The infusion nurse drew blood from my arm rather than through the mediport. She started the IV and I sat in my cubicle for an hour or so while it pumped quietly. Several people poked their heads in to see how I was doing. Everything appeared fine.

I heard the nurse on the phone at her station telling someone that I looked good. She came in to tell me I could go home. I leaned forward to pack up my computer and…. “I don’t think so,” I said. All of a sudden I felt the heat rush, the nausea, the dizziness, the closed throat. “I think you should take my blood pressure.” And sure enough, it had suddenly fallen to 84/53.

Oh no, here we go again. In minutes I was throwing up and feeling faint.

“Once is a fluke. Twice is an allergy,” My doctor said as they pumped me with steroid, Benadryl, oxygen, and she made the decision to abort treatment again for another week.

I am so bummed!

“What are we going to do?! Can’t we just keep the pump going and I’ll live with the symptoms?” I asked.

She looked at me as if explaining to a child. “I’m not going to kill you with this treatment. We’ll come up with something.”

And she will. She has more experience with this drug than anyone else, and she hasn’t seen this kind of reaction before. But maybe the drug company has some information to share. She will come up with an altered plan by next week. Maybe we’ll continue Abraxane and Temodar, the killing drugs, without the Genasense. Maybe Genasense has done its work and the other two can continue to finish the job without it.

This is not going to be an easy week. I’ll try not to speculate and worry too much. The medical details are, after all, way beyond my expertise. But it sure was comforting to have a plan and simply be able to follow it. This business of being unsure about where I’m going is scary. The best part is that I know I’m in good hands and I trust my doctor to come up with something. Until I know more, I’m going to fight the urge to let it get me down.

Feeling fine

My last blog entry painted a pretty awful picture. Yes, it was unpleasant and yes, it was scary. But that was Monday and this is today. I want to share that tonight I’m feeling really good.

A friend called tonight at 10:30, thinking it was 9:30. After a half hour, he was yawning and falling asleep on the phone. I, on the other hand, felt jazzed and energized; this after spending the day at a client site in the City; and this in contrast to feeling exhausted most nights before 10 o’clock for the past four months.

Feeling this good after being off chemo drugs for three and a half weeks gives me hope that once the whole experience is over I’ll get my energy and spirit back fulltime. It’s a small glimpse of the big picture.

Scary medical mystery

After four rejuvenating days in the desert, I flew home Sunday night under less than pleasant conditions. I anticipated the travel would be tiring, but the reality is, flying just is not the experience it used to be. Cattle class has become a case of one packed flight after another. Stuff ‘em in; keep ‘em moving.

I wasn’t in my bed until nearly 1:00 AM, but the next morning I was up and in the City bright and early to start my third treatment cycle. Everything went as expected; including the pastrami sandwich I treat myself to on days I plan to be at the Cancer Center for a long stretch. I pick one up at a deli along the walking route from Grand Central, reheat it in the center’s microwave, and eat it while I’m waiting for my drugs to be mixed and sent up from the pharmacy.

Nothing unusual or out of the ordinary until…

A few minutes after she started pumping Genasense through the IV, the nurse clamped the drug line so she could draw blood through a different line in the mediport. They’ve done it that way before. First they flush the line with a mild saline solution; then they fill a few tubes with blood; and finally they flush with saline again. Sometime during the third tube I started feeling heat flowing up through my chest and neck. My throat felt blocked. I was nauseous and dizzy. The treatment nurse called my doctor and the program coordinator nurse, and pretty soon the small cubicle was filled with medical personnel – I counted eight – staring at me with varying degrees of concern, confusion, and near-horror visible on their faces.

I heard someone say something about chest pain. “Not chest pain; it’s my esophagus,” I said. “My throat is closing down. I can’t swallow.”

But they hooked me up to an EKG monitor anyway. By that time, the heat had passed, leaving me soaked with sweat, chilled, and shaking so hard it made the EKG difficult to read. But even through all that, it was clearly not a heart problem.

I lay there for a while, looking like death warmed over, hooked up to oxygen and having various drugs pumped into me to counteract symptoms: a steroid to keep the breathing passages open, Benadryl to address a possible allergic reaction, Demerol to calm me down and stop the shaking. All the while, the women attending to me debated about what could be happening.

Could it be an allergic reaction, and if so, to what? It’s possible there was a small amount of Genasense drug pooled in the mediport, a small bolus that got pushed into my system when the nurse cleared the line to draw blood, a small amount that was too much to handle at once. Could it have been a similar situation with bacteria getting flushed in through the IV?

My doctor thought I might have “flipped a clot.” There is typically a small amount of blood that accumulates behind the mediport. That’s why they flush the line before starting an infusion and before and after drawing blood. It’s possible that a small clot got loosed into my lungs, which is why she made the executive decision to send me to the hospital for a CT scan.

There were other speculations while we waited for the ambulance. It might have been a reaction to the food; not necessarily food poisoning, but even just eating too fast. And most of the symptoms could be chalked up to a vasovagal reaction that commonly occurs when drawing blood.

This last option is making more and more sense to me. It's a reflex of the involuntary nervous system that ends up depriving the brain of oxygen. Blood pressure and oxygen level drop and people who experience this often faint.

More likely than not, we’ll never know the exact cause of the episode. My doctor aborted treatment for the time being – the plan is to hook me up to the Genasense pump next Monday and watch carefully in the meantime.

I spent the rest of yesterday in the hospital emergency room adding little to the body of knowledge and speculation. The CT scan showed nothing. Even if there had been a clot, it could have dissolved in the four hours waiting for the scan.

Fortunately for me, my daughter who lives in Manhattan was in town and able to meet me at the hospital. I called and she offered to have me spend the night at her apartment, which was a good thing for a variety of reasons. Number one of course, was the pleasure of my daughter’s company overnight! But it wasn’t until I was on the table getting scanned that I realized I couldn’t go home if I wanted to. I had left my computer bag at the doctor’s office before heading for the hospital. Truth to tell, I was pretty much out-of-it by that time and my doctor felt it would be safest locked in her office. Hours later, I remembered that my wallet, train tickets, and car key were also locked up safe… in the bag.

For all the bad things that happened yesterday, I feel truly lucky and blessed. The episode occurred in a place where I had all the medical attention I needed. My daughter was in town and available. And above all, I am healthy. My overall level of health has gotten me through a lifetime of events already this year. I am grateful….

High tolerance for frustration

The last few months have left me shaken. That shouldn’t be too hard to understand. Being handed a diagnosis of stage IV cancer is unsettling, to say the least. All senses go on high alert and jumble into a confused mess of me-first signals.

My typical reaction to life hurdles is to approach, analyze, and come up with a plan of action when I feel prepared. In fact, I know there are some who see me as adventuresome and spontaneous, because once I’ve sufficiently digested the details, my actions tend to flow fairly smoothly and without much advance warning to the outside world. My apparent impulsiveness can extend to behavior others see as risky. The outside world doesn’t know how much I may have agonized to get to the point of action.

In fact, my own evaluation is that I frequently over-think my options. My mind works on problems all the time. I half-wake in the middle of the night with answers I may or may not remember by morning to puzzles I didn’t know I was trying to solve. All this brain work is exhausting!

I never completely lost the youthful sense that I can do anything I set my mind to. That, paired with my tendency toward unending analysis, has taken me to interesting places, both in the physical realm and in the business world. Travel was a natural part of what I did.

That was then; this is now. These days I don’t like being too far away from home or from my medical team. I worry how far I can get before being overcome by exhaustion. Not insurmountable problems, of course, but worry can certainly sap motivation!

So here I am in Arizona, at a beautiful golf resort in the desert with many friends who share a passion for technology. We’re here to learn and to enjoy each other’s company. I could easily have talked myself out of the trip given my current state of affairs, but I came. I’m thrilled to be here and so far I relish every minute of it! I hope to take home a renewed sense of perspective on how far my circumstances have weighed me down.

I owe a huge debt to the friends who encouraged me to come. Being among people who make me feel so special is tremendously curative. They are feeding my soul. They remind me that I may have cancer, but I can still lead a spirited, active life. That’s truly special!

How do they do it?

I got to the airport this morning feeling somewhat carsick from the limo driver’s jerky driving style. Thinking some food might settle my stomach, I headed toward the most visible option, the Golden Arches. McDonald’s can’t possibly ruin a bacon and egg sandwich, can they?

Well, the bad news is that indeed, they can! They’ve applied the same level of salty mediocrity to the breakfast sandwich that they’ve used on hamburgers to successfully club them to death for forty-some years.

I remember when McDonald’s was the new kid in town, back in the late 1950’s. My mother would pack all five of her children into the family station wagon and drive the ten miles or so to treat us to 15-cent hamburgers. The even bigger treat was the milkshakes. We loved turning them upside-down to prove they were so thick they wouldn’t spill. It worked… most of the time. (Is that a good thing?!)

What I don’t remember about those outings was a complete lack of taste in the food. Is that only because I was too young to have honed my food discrimination? Or has McDonald’s gotten really bad over the years?

Fortunately, I have some really good food in my immediate future that will more than offset the memory of this morning's awful sandwich. I’m on my way to Phoenix for the Southwest Fox Conference (aka SWFox). The conference hotel is actually in Mesa, which is rumored to be breathtaking. Some very dedicated friends have spent the last year planning and preparing for this conference and it promises to be the FoxEvent of the year! It’s going to be several days of relaxing, networking, and partying with computer-industry friends, in a gorgeous setting, picking up pearls of wisdom about technology I love.

It’s difficult for me to get-up-and-go these days, given my limited energy, penchant to tire easily, and overall anxiety level. But this is a last fling before starting my next cycle of chemotherapy and I’m getting more and more excited as this plane approaches Phoenix. What a treat!

Moving right along

I just returned from a visit with my oncologist to discuss the results of my most recent PET scan. As expected, the news continues to be excellent; my health with regard to this insidious cancer continues to improve. As on the previous scan, there are no metabolic hot spots, no activity in my lungs to indicate that cancer is growing or spreading. The largest of the remaining tumors has shrunk further, from 1.2 mm to 0.9 mm. Many of the smaller ones are gone altogether. The drugs are doing their dirty work and my body is flushing the detritus!

The radiologist’s report noted a pattern of “ground glass” in my lungs. This is nothing to worry about, according to my doctor. A mild lung inflammation that accounts for the intermittent fevers, limited stamina, and flagging energy I’ve had over the past couple of weeks. It could be from the drugs, or possibly something inhaled. She assured me there’s no possibility it’s cancer, but of course, I had to ask. She gave me a prescription to address it.

I’m on schedule to start a third treatment cycle next week. After that, my doctor’s cautious approach dictates that we add on a fourth round “for good measure.” This is not fun, but it’s the safe way to go, so I’m all for it.

Vision from another era

I saw a young couple in the Cancer Center yesterday who struck me as jarringly out of place. I saw them both from the back, one sitting on a couch, the other on a chair in front of the computer available for common use in the waiting room. I couldn’t tell the gender of either from behind.

The one on the couch had a very full head of dreadlocks, long, tied back. It prompted a conversation in my head about why anyone would do that to their hair. The process that creates dreads is the same as that which produces felt. Once matted, it’s completely irreversible. Although they can be washed, they sometimes, as in this case, tend to look unkempt and unclean.

In some cultures, dreadlocks are a religious symbol, but this was a young white man. The hair was more likely a rebellious statement.

Before she turned around, the smaller member of the couple could have been a young boy. Her face was distinctly feminine, but her hair was scraggly, uncombed, flying off in all directions. She wore a baseball cap, backwards and with the brim askew toward her left shoulder. She was wearing a long, flowing, colorful skirt, and flip-flops that gave the appearance she was barefoot. She reminded me of women I saw in Brooklyn in the 1950’s, women my mother referred to as gypsies, though I never knew anything about them beyond their physical appearance, their pierced ears, and the babies they nursed as they rode along in the trolley cars.

This couple struck me as straight out of the sixties and seventies, a vivid reminder of my friends, the “dirty hippies” I ran with for several years. We were criticized for not making the effort to fit in, for not upholding common rules of appearance. The more we were criticized, the more we needed to show off how different we were. We were outcasts then, and this couple successfully captured the look and feel we aspired to.

Then a nurse came out and called the name of “Miss So-and-so” and these two walked into the treatment area to meet with a doctor. My heart broke. Still adolescents trying to find their way, these kids were having to deal with life-threatening events.

Cancer sucks.

R & R

I started my second week without chemotherapy drugs today. I’m still tired so much of the time. It feels like a cliché to keep saying it, but it’s what I’m living with. I need to pace myself, even during this period of recuperation between cycles.

Last week I pushed myself a little too far and ended up spiking fevers three days in a row. I never felt sick enough to call it “flu”, but my joints ached. Chills accompanied the fevers and sapped my energy even more.

This weekend I visited relatives in Pennsylvania. I drove home this morning in time to catch a train into the City to have blood drawn. By the time I returned home, I was due a nap, and slept for three hours.

It was my first time in the Cancer Center in two weeks. I can’t believe how much I missed the place! I wasn’t scheduled to see anyone besides the lab technician, but the nurse who oversees my participation in the clinical trial saw me and stopped into the phlebotomist’s office to administer a hug and check up on me. My doctor also stopped by. These women have become family. My doctor said she dreamed about me. She couldn’t remember the details, but she woke up thinking she had to tell me I’d shown up in her sleep. That fits with the feeling I’ve had for years of a very primal connection with this woman.

It’s actually been three weeks since I saw my doctor. The last time I was there she was on her way to Barcelona to deliver a talk about the Genasense drug and the workings of this clinical trial. Months ago, when she was evaluating me for participation, she said she hoped to make me a “poster child.” I didn’t know at the time, but that conference was what she had in mind. My treatment went even better than anticipated, so she was able to wow the crowd with slides of my before and after scans, the pictures taken before and after my first treatment cycle. It's all so much mind-boggling technology, and I'm proud to be part of it.

End of Round Two

Last night I took my last chemotherapy pills of the second treatment cycle. On October 14th I’ll get another full body PET scan to evaluate the effectiveness of this cycle, the progress made since the last scan in August. I’m already scheduled for a third treatment cycle.

I don’t have the same anxiety I had before that last scan. I’ve got good reason to expect more good news. The tumors were no longer metabolically active at that time. I anticipate that whatever is left of them is being consumed and discarded by my body, kind of like the old electronic arcade game, Pacman. In my mind’s eye, I see a little cartoon head traveling through my lungs, scooping up and munching cancer cells.

For the past week or so my side effects have been minimal. The one distressing thing I’ve come to expect is continual tiredness. My energy is limited, and when it’s used up, I ache through my whole body. My bones feel limp. It’s as if the energy has been completely sucked out of me. I frequently wake up tired after eight or more hours of sleep.

I was fairly active this past weekend. Saturday, my daughter and I attended a consumer electronics show at the Javits Convention Center. After that we walked around Manhattan some, and ended up at the Farmers Market in Union Square. Sunday, I went to a local art show with a friend and walked around the outdoor fair for a couple of hours. Today I paid for all that activity with bone-weary tiredness.

I hope the next three weeks of rest from medication will provide reprieve from some of the tiredness too. I need to rest up for the next go round starting October 22nd.

Perspective

The strangest thing just happened.

I’ve been beating myself up all day for not jumping on a particular client issue more swiftly. I apologize to readers who may be numbers-averse, or whose eyes glaze over when you hear the word “accounting”, but I need to get a little technical to provide some background.

The Director of Finance uses an application I created for her predecessor to create monthly reports that compare actual expenditures to budgeted figures. My software doesn’t handle accounting at all; that’s done by a well known business software package that simply records transactions, one after another. My application reads their general ledger, applies complicated business rules to the gathered figures, and creates reports that reflect the real-world use of their money.

A few days ago, I found out they upgraded their accounting software to a new version. No one thought to tell me they’d moved their database until my application crashed for no apparent reason.

Once we got database access sorted out, my client was able to run her reports. Except now, all the actual expenses and income showed up as zero. I knew it had to do with the new accounting software, but I had trouble setting my focus on what might be wrong. When I finally got to it, it was simple and obvious.

The accounting software has always identified transactions in the period they occur, for example 200801 for the first month in this fiscal year. Every month from July to June, the last two digits change, 01 through 12.

The new version of the accounting database inexplicably changed that designation to 2008001, allowing three digits for the month. Obvious to my computer friends, but maybe not so much to others is this: when you look for a range of transactions from 200801 – 200802 (July and August of the current fiscal year), the new format returns no matches. No data at all!

It was near the end of the day when I identified the nature of the problem. I sent email to explain, but wanted to make sure my client saw it before she left for the weekend, so I called her while still silently kicking myself for dragging my feet.

Now, here’s the strange part: the disconnect between the way I’d been feeling and the way she thanked me. I was concerned I’d let her down by not contacting her sooner. She, on the other hand, said, “Thank you for coming through for us… like you always do.”

Over the years, friends have pointed out that no-one is harder on me than I am. I see all my flaws in full color 3-D. I try to overlook my weaknesses, but more often than not, they are simply the self-worth assumptions I live with, my baggage.

Some advise that when negative thoughts bubble up from your gut, you should pat yourself on the back and say, “Thanks for sharing.” I can do that. What I have trouble with is recognizing the negative thoughts in the first place.

Another treatment day

The day started badly. I showered and dressed and got ready for a long appointment in the Cancer Center. But I missed my train. The next one would come along in about half an hour and get me into the City about forty-five minutes late. Standing on the platform, I remember the lunch I so carefully prepared to bring with me. It was still sitting on my kitchen counter. Whoo boy.

As I walk from Grand Central to the doctor’s office, already feeling hungry and craving pastrami, I call my daughter, who I hoped would be at her desk computer. “Can you find me a pastrami sandwich on Third Avenue between 42nd and 34th Streets?” And sure enough, she does: “Sarge’s Deli, where pastrami is king.” I knew if anyone could locate something like that in a trice it would be my daughter, the “semantic web” specialist. I was simply delighted to be able to satisfy my craving.

The appointment starts, as always, with blood work. Sometimes there are more tubes to fill than others. Sometimes there is more blood to draw after the infusion. But always, we start by drawing blood.

I know all the phlebotomists by name. They see lots of patients in the course of a day, so they are all well practiced and good. But they have different strengths. Josef, for example is my favorite. His needle sticks never cause me pain. Never. Today, Judith drew the blood. I feel the needle sting as it goes in, and she sometimes leaves small bruises behind, but she is always very engaging and we chat amiably.

After meeting with the doctor and nurses who monitor my participation in the program, I go downstairs to the treatment floor. By this time, my Genasense IV bag is empty and the electronic pump is beeping wildly. People in the elevator eye me suspiciously. Is this an escape of some sort?

I sit in my private room and work at the computer while my infusion nurse prepares my chart and orders meds from the pharmacy. When the drugs arrive, she draws more blood. This time, she fills the test tubes from the line into the mediport. It is quick and there is no sting whatsoever. Then she puts the mediport to its more intended use as IV, and infuses first the steroid, then the Abraxane.

By this time, I am very tired. I fall asleep while the IV drains into me, and when it’s over, I have a sort-of dream that I can’t open my mouth to speak, can’t lift my arms, can’t move my head or body. It’s disorienting, but I’ve had this dream before, usually when sleeping in a car. I think it comes from being comfortable enough to sleep, but feeling restricted by the reclining seat. There’s no room to turn over, and I can’t exit the seat without changing to a sitting position. When the nurse comes by to disconnect my line and tell me I can leave, I ask if I can stay and sleep. “Of course,” she says.

An hour or so later, I wake, pack my bag, and get up to leave. I stop at the nurses’ desk to say goodbye. She looks at me and says, “Go back and sit down. I’m calling your doctor.” It seems my face is breaking out in hives. Oh no. This happened a few weeks ago. It started on the weekend, just before the last Abraxane infusion. The steroids cleared it up for a few days, but the condition returned with an intense vengeance several days later when they wore off.

So, it’s back upstairs to show off my hives and get yet more drugs: Claritin for the trip home, and Benadryl to take when I’m near my bed, as it will make me sleepy. They want me to take anti-allergy medications for the rest of the week as a proactive measure.

The day ended badly. I fell asleep from the Benadryl and overslept the radio alarm I’d set to wake up and take my Temodar chemotherapy pill. I hope it’s all right that I took it in the middle of the night instead.

So many medications to keep straight....

More of the same

I haven’t been posting to the blog. It feels a bit like complaining to get up here and say: I had another lousy day. Am I losing sight of the prize? I am, after all, getting better from this treatment, even if I have to put up with fevers, low energy, sensitive skin, joint aches, headaches, and sometimes worse? And not to forget the round-the-clock schedule of drugs, both chemo poisons, and over-the-counter remedies that address my side effects.

Yes, my life is consumed by the details of complying with the treatment plan and dealing with its fallout. It’s not pleasant, but it’s what I have to do. I feel like an idiot savant, constantly chanting to myself: two Tylenol and two Metamucil capsules at 10:00 am, two Advil at 4:00 pm, two Tylenol and two Metamucil capsules at 10:00 pm, Zofran at 10:30 pm, Temodar at 11:30 pm.

I will say this though: whoever dreamed up putting Metamucil into capsules is a genius! The powder form of this “Psyllium Dietary Fiber Supplement” is one foul tasting treatment that I always shunned. Even the flavored varieties can’t mask the slippery, grainy, unpleasant texture. But the capsules are very effective, address a variety of conditions, and are easy to take.

I keep track of all my side effects and all the drugs I take in a spreadsheet that my medical team reviews. They, of course, can appreciate the minutiae of what I go through since it helps them put my and other people’s reactions into perspective.

But friends? Do they want to hear those details? I’m skeptical that’s what friends want to hear. In fact, I asked that very question last night when I visited with some friends.

They are creative types I’ve known as many as twenty-five years. It’s a free-flowing group of “attendees” who meet at the home of one woman nearly every two weeks. The hostess doesn’t drive at night, but she loves the company and has a comfortable home that accommodates it. The mostly women who show up usually bring their latest craft project to work on, and to share for critical fine-tuning. When they bring their husbands, those men typically fall asleep on the couch in another room, or visit with my friend’s husband. Topics around the table branch out to life issues and concerns. This “Group” has grown to be a family.

My dear friend has crafted a life around a medical condition that’s thrown limitations at her for over thirty-five years. She doesn’t complain about her symptoms. She hosts a potluck party!

“How are you?” they ask me when I enter the room. I show them my mediport and my portable IV. They are concerned that I was feverish earlier in the day.

“Are you really interested in this?” I ask skeptically.

“Yes,” they assure me. It puts a visual picture together with the words they’ve been reading here in the blog. It’s a reminder that I, their friend, continue to struggle with a problem that takes a different form every day. It gives them a sense of what to expect in the outside world with other people who might be more reticent to talk about these issues. It adds depth and perspective to the growing problem of cancer and chronic conditions in an aging population.

I’ve always believed that honesty is important. There are topics I can’t talk about publicly – religion and politics jump to mind. But this is one arena where I want to make a contribution.

I miss my mother

There isn’t a day goes by I don’t wish to pick up the phone and dial my mother at the same number we had when we first moved to Long Island in the mid-50’s. What a long line of Bell cable connected that number back to the phone that witnessed endless hours of conversation with and about boys through my high school years! But that’s a different story… losing touch with personal history. In the moment, I miss my mother, who died suddenly at eighty, a year and a half ago.

Heaven knows, my relationship with my mother wasn’t always smooth. And when I say I miss her, I’m not sure if it’s the woman she was at the end of her life, the young woman who cried and fretted and called the police when I arrived home late from kindergarten, or some version selected from millions of other moments before, between, and after. Truth is, there were many times during my life when I longed for a mother who lived only in my heart, and missed her even while facing her.

But again, that’s a different story.

What I’m struck with right now is the unfairness of death. Not death itself, of course. Death is truly the fairest thing about life. Everyone dies, no matter the circumstances of their lives, no matter how much or how little they contribute, no matter how happy or miserable they feel from day to day. Everyone dies. That’s fair.

Earlier this summer, a man was walking through the small suburban town where I live. At the same time, an elderly woman drove down the hill toward the town’s main intersection. She had a seizure right at that moment, lost control of her car, and proceeded to run into and kill the man walking on the sidewalk.

What is unfair about death is the timing and the trappings: Young people robbed of a future; accidents that randomly pick off unsuspecting, unprepared victims; people of any age ravaged by debilitating diseases; acts of cruelty and violence meted out by cowardly bullies. To be truly fair, death should allow everyone the chance to expire of natural causes at the point where they can no longer care for themselves or feel connected to life.

What is further unfair is how death affects those left behind. Regardless of the circumstances that take the one who dies, the rest of us are never ready to lose a loved one. It’s difficult, if possible at all, to integrate the fact that we’ll never see someone again, never get their opinion or advice, never do lunch, have an opportunity to tie up loose ends together, or simply sit in their presence and feel their warmth. We counted on consistency, but now we reach out to touch and get no response. How very unfair.

Needless to say, I’ve thought about this a lot this summer….

The worst day yet

I’ve heard that chemo side effects are cumulative, so maybe today was just an increment of what I’ve felt in weeks past. I spent most of it in bed, sleeping. When awake, I was listless and crampy and vaguely nauseous. The upset stomach made me wish I was still sleeping!

All told, things haven’t been too bad, but I hope there aren't too many more days like today.

Food

Anyone who knows me knows that I love good food.

I used to be a pretty good cook, but it was always driven by what I wanted to eat. I enjoyed getting creative, mixing and matching tastes in my head before translating them to actual dishes. These days, I prefer to have others do the cooking, but I still love sitting down to a good meal.

Yesterday I had my Abraxane infusion, and for the next few days I can expect some of the most intense side effects of the entire cycle. The cruelest of all is that it robs my sense of taste! It starts with a metallic taste in my mouth, and by tomorrow, most food won’t have more flavor than paper. At the same time, it brings intense and sudden hunger pangs that leave me weak if I ignore them.

I stopped for a slice of pizza on the way home from work and remembered what I was in for. I’d been craving the pizza, but when it got to my mouth, all I could taste was salt. I couldn't finish it.

I’m looking forward to Saturday, when my taste buds resume their normally exalted function. For sure, you’ll find me in the pizza parlor, savoring the slice I missed out on tonight!

A wonderful gift

So many friends and relatives have been really super in their efforts to reach out and offer help. I haven’t mentioned it here because everyone’s desire and ability to help is different. It’s a very personal thing. And it can become awkward on either side of the transaction. I for one find “help” very difficult to talk about.

I related a story to a friend recently:

I was about six years old and the family was seated at the dinner table. My younger sister walked in, proudly showing off a bunch of grapes that a neighbor had given her. There was a lot of competitiveness between my sister and me, and I was brash enough then to figure if she deserved grapes, then I deserved some too. I rose from my seat.

“Where are you going?” my father bellowed.

“To get some grapes,” I walked into the trap innocently.

“Sit down! We don’t ask for things.” my father reprimanded.

Not long after that, I had a dream. My sister and I were playing with a friend. My mother called the other two into the kitchen and offered them popcorn balls. They weren’t shy about showing off their haul when they came back to me. I was annoyed when I stomped into the kitchen and asked, “Where’s mine?”

“You didn’t make your bed this morning, so I can’t give you any,” my mother rationalized. “Your father works hard to earn those popcorn balls,” she added, reinforcing the notion that I had to work hard for whatever I got and I sure didn’t deserve handouts.

The lessons were ingrained early. And to this day, I struggle with issues of self-worth and deservedness.

I’ve mentioned before in this account that I’m way outside my comfort zone in lots of ways this summer. One of those ways is how people have generously offered time and things to ease my suffering and help me get back on track. My initial reaction, at least internally, is always: “But I don’t deserve it.” And sometimes the offers, combined with limited energy, have made me cranky and guilty.

On the other hand, my friends have done some incredible things.

My relationship with my sister, for example, has finally grown close and loving and accepting, after years of being dominated by competitiveness and caution.

Others who I’ve lost touch with over the years have returned to extend emotional and financial support, most notably my father’s sister, a dear aunt who was always supportive while I was growing up.

One friend championed my cause and raised funds for me from other friends, knowing I couldn’t dream of asking for money for myself!

Some have offered social opportunities. Others have helped me make decisions about organizing my accounts and affairs and business dealings. Another has agreed to take over writing my magazine column until I feel up to taking it back.

And the other day, I got a wonderful gift from my friends in the computer community I frequent. After my most recent scan, I spoke with my doctor about my schedule, and got clearance to attend a conference in October that some of my friends are running. They were so happy to hear from me when I called to register. They hadn’t known how to broach the subject, but had decided that if I was able to attend the conference, they would pick up my fees.

So many friends…. So many things to be grateful for….

And the beat goes on…

I’m returning from the Cancer Center, where I had the Genasense pump removed, received steroid and Abraxane infusions, met with my oncologist and program-supervisor nurse; in short, spent most of a day in the City at the place I’ve come to know as home-away-from-home.

Things are different. A heavy weight has been removed since my last PET scan. The threat of imminent danger is gone. I no longer wake with my heart pounding in fear of what the day will bring. On the other hand, there is still a sense of having to complete a long and rigorous journey.

This is a very different and much preferable trip. Difficult, yes, but it’s not like, for example, being trapped in a collapsed mine or on an icy mountain, hoping every minute that rescuers will arrive, but knowing there’s a chance time will run out before they break through. Or the panic that airline passengers felt moments before they slammed into the World Trade Center, knowing their lives were about to come to a violent end.

I’m not trying to minimize the horror of those other situations, but terror is terror. I experienced many moments of panic this summer knowing that no matter how valiant my fight, circumstances could drop from the sky and blow me away once again.

I may be out of imminent danger, but the struggle goes on.

Chemotherapy, round two

The infusion nurse looked uncomfortable as she prepared to insert a needle into my mediport yesterday. It’s a different motion than slipping a needle into a vein to draw blood or start an IV line. She grabs it kind-of like a knife handle, and jabs firmly through the skin and all the way through the rubber cover of the mediport.

“It’s okay,” I assure her, “it doesn’t really hurt.”

But in spite of training, and years of practice, it doesn’t feel natural to stab someone in the chest that way, and they cringe a little every time they do it.

It doesn’t really hurt, but it does take its toll. It leaves me feeling deeply sad. I’m once again hooked up to my portable IV, back to carrying around a weeklong supply of Genasense. I’m back on chemo.

Don’t get me wrong, I’m extremely grateful that the treatment is working in my favor and I can look forward to a time when I’ll have hair and no cancer. But the process is very unsettling, disturbing, intrusive. It represents a profound loss of innocence. I’m reminded again and again that there are things I’ll never be able to take for granted again.

Good read #1

A friend recommended a book that addresses problems with health care insurers, the obstacles they throw down in our way to keep from paying what it costs to keep us alive. The author is a cancer survivor who lived through a grueling ordeal with a rare cancer, and at the same time, fought her insurer to get her treatment paid for. Not only that, but faced with misdiagnoses and dismissive treatment on the part of her HMO, Laurie Todd researched and found the best treatment for her form of cancer, sought out the premier expert on that treatment, and secured approval to fly across the country to obtain that out-of-network treatment for herself… on her HMO’s dime. She realized early on that she was at least as likely to die from neglect by her insurer as from any cancer in her body… and she’d have none of it!

Laurie’s book is a gem, full of wisdom and attitude. Fight Your Health Insurer and Win: Secrets of the Insurance Warrior is her firsthand account of what she did and said to get her treatment approved and paid for in the face of the insurer’s claims that it was “experimental” and therefore, not covered. It’s also a very moving portrayal of her experience with a living nightmare, pseudomyxoma peritonei – appendix cancer. From her account, the more familiar forms of cancer are downright well behaved compared to this one.

Appendix cancer has a tendency to entangle all the abdominal organs with tumor and scar tissue. The lengthy procedure she ultimately underwent cut out parts of, and re-sectioned, many of her abdominal organs, and then, during the course of the surgery, applied heated chemotherapy agents directly onto those organs and throughout the abdominal cavity. It left her in the hospital for forty days afterward, and too weak to care for herself even then.

Since there was no-one in her HMO qualified to perform or recommend such a procedure, she had to become her own advocate. In so doing, the feisty Laurie Todd “turned [a prognosis of] ‘two good years’ into an 80% chance of twenty good years. It was a huge, terrifying, potentially fatal war that I had to fight. The best that I could do was put my head down, embrace the battle, and forge ahead.”

And ultimately, it was a task she found extremely empowering.

Much of Laurie’s book reads with the authority backed by a legal degree. She is not a lawyer, but her presentation is very professional and persuasive. She is acutely aware of the inherent conflict of interest built into the health care reimbursement system. Insurers hire doctors to provide care, but give them a mandate to hold down costs. In other words, the doctors’ professional oath dictates they provide lifesaving care, but in order to keep their jobs or their contracts, they are bound to their employer’s orders to keep within budget. Laurie sums it up this way: “If cost containment was the imperative, their primary goal was then to get me and my expensive and difficult cancer to just go away. Have no treatment, have locally available treatment, have only palliative treatment. And die – the sooner; the better.”

But she’s also smart enough to know that the insurance machine is supposed to pay for treatment. She knew from the outset that she had a good shot at getting them to do the right thing: “The folks at the insurance company are bureaucrats; they always use the same tactics in the same order every time. You are smarter than they are; it is a battle of wits with an unarmed opponent!”

Laurie’s book, available on her website, is a must read, even if you don’t have cancer. As she points out: “Nobody has a magic charm to protect them from Bad Medical Trouble.” It can happen anytime, and this book can pre-arm you with information to get you through some of the roadblocks.

Since her ordeal, Laurie has made it her mission to help others in the same situation. Based on her own experience, she has helped many other patients prepare successful insurance appeals. She speaks on the subject and conducts book signings.

In my case, I’m actually taking experimental drugs, so it’s no surprise insurance won’t pay for those. But the drug companies have a vested interest in seeing that the drugs get consumed, tested, and ultimately approved, so they donate them to the researchers. This is fortunate for me, as one dose of Abraxane alone costs $10,000, and the protocol calls for two doses per cycle. In addition, my oncologist's office administrator has done a phenomenal job of holding their feet to the fire for the myriad ongoing tests I’m subjected to.

So, thus far I haven't needed to personally take on my insurance carrier, but it’s comforting to know Laurie is only an email away.

I wish I had the nerve...

One of my favorite features in New York Magazine is a two-page spread called The Look Book, in which columnist Amy Larocca interviews someone on the street with notable style. The text is minimal; Q&A mostly about how the person describes their own look and where they got the clothes they’re wearing. When you rotate the magazine 90-degrees, it appears as kind of a sidebar to a large picture that takes up most of the two pages.

The current issue features a young woman with alopecia named Sam Rudolph. Alopecia is a condition that causes hair loss, and she has been bald since the age of seven. If you follow the link above, you can see her picture. She’s wearing huge sunglasses, nothing at all on her head, and she's lovely. The article ends with a fantastic quote:

Q: "How do you feel about being bald now?"

A: "Obviously, good enough to look like this. My mother always said my life would be easier if I just wore a wig, but I don’t want to hide who I am. Being bald is a big part of my life, and if I cover it up, it starts to feel like everything is fake."

This all has so much relevance to me now. I don't have the flair or the youth to pull it off, but I'd love to walk through the streets naked-headed! My wig is very natural looking and most people don't even know I'm wearing one. But it gets uncomfortable, particularly on hot days.

If I only had the nerve....

The little buggers are on the run!

I had my second PET scan on Monday, a follow-up diagnostic test just like the one I had in mid-June. This one was administered to measure the effects of my first six weeks of chemotherapy.

The procedure started with an intravenous infusion of radioactive glucose and a large drink of barium sulfate. Then I sat for about an hour while my body took up the fluids.

Next step was a CT scan. I lay on my back on a table that slides into a huge, space-age looking device. If you’ve never encountered such a machine, in person or on the likes of Grey’s Anatomy, this very imposing piece of equipment is a large, round, open-ended tunnel that projects x-rays toward you as you slide slowly through it. Unlike a simple x-ray machine, it records a series of images that present a three-dimensional view of the subject’s insides. It’s not painful or particularly uncomfortable. You simply lie still as the table slides to the proper positions to photograph what the doctor wants to see. This procedure took another hour, as they scanned my entire body, head to toe. A trained radiologist later reviewed the recorded images.

All cells consume glucose, but malignant cells are particularly greedy. They have a higher rate of metabolism than normal cells, so gobble up the glucose voraciously, and in the process, they light up from the radioactive substance. The radiologist looks for these metabolic “hot spots” to determine where tumors are growing.

In June, they identified about ten tiny nodules. This wasn’t a lot of cancer, either in size or amount. The largest tumor was less than two centimeters. Two months later, this past Monday, there were no hot spots at all! All the glucose was taken up equally. There were no visible pinpoints of light in the PET portion of the scan.

So where did they go? Well, the tumors are still there. They are dead and dying, but my body hasn’t fully absorbed or flushed them. They show up on the CT images as dull concentrations of cells, but there is nothing “hot” to be found.

I met with my oncologist this morning. She is very excited about these results. Needless to say, I am also. She tells me that when patients respond to this treatment in this manner, they respond “completely.” They go into remission “forever.”

Those are actually hard words to hear. I’ve been so very anxious the past few weeks, increasingly so as the date for the PET scan approached. I’ve been preparing myself for the best possible outcome, but I also have experience being blindsided. Twice, cancer fell out of the sky and took over my life. Twice, I got phone calls informing me I had melanoma I had no suspicion was there. At the same time I felt that my body was strong and healing, I was afraid to ignore the possibility of unwanted results.

“And how long is forever?” I asked, cautiously optimistic. After all, I was cancer-free for five years until this spring.

“Eight years,” the extent of the research so far with this clinical trial. Patients continue to get scanned once a year, but so far, their cancer hasn’t returned.

Where to next?

This coming Monday I’ll start the second treatment cycle. Another six weeks of drugs, starting with a weeklong infusion of Genasense. Genasense is the experimental drug that acts as a sensitizing agent. It alters the melanoma’s DNA so it’s no longer programmed to live and grow forever. In its weakened state, the melanoma is very susceptible to the killing power of the Abraxane infusion that ends the first week.

I will undergo at least two more entire treatment cycles and possibly a third; that’s another four to six months of managing side effects and missing my hair. On the positive side, the treatment is moving in the right direction, and I feel about a hundred pounds lighter!

I love/hate New York

In a recent email, a friend reminded me that I hate New York City. That was true many years ago, when he lived on the east coast. My relationship with the City has gone through many phases over the years, and in the last decade, my feelings have swung more and more toward “like” than “dislike.”

For a long time, I lived in the suburbs, and traveled into the City not more than once or twice a year. But now I have clients in Manhattan, a daughter who lives and works there, and a medical team I must visit regularly. It might be different if I had to commute every day, but for now, I relish my trips in to soak up the complex City atmosphere.

Last night I attended a very NYC event with my daughter, an event that showcased the best and worst of the City. She had received free tickets from TimeOut New York magazine, to a SHOWTIME screening of two upcoming television season premiers: Weeds, returning for a third season, and Californication, a brand new show. Where else but maybe California can you expect to preview two such sophisticated-trashy shows in a theater, be served drinks and food afterward, and leave with a gift bag including a DVD of an entire season of Weeds?

That was the positive, I-love-New-York, side of the evening.

On the flip side, free giveaways tend to encourage the most careless, stepping-on-toes, behavior, and New Yorkers take that me-first aggressiveness to rude heights. The after-party felt more like a wrestling match.

The disregard for personal space in crowds is something New Yorkers come to expect, but it always offends my senses. We emerged from the theater into the humid, sticky night, and didn’t find much relief as noises, smells, and flashing lights bounced off all surfaces in the concrete canyon.

This is starting to sound like complaining, and I don’t really mean it that way. Cranky as I am, I had fun last night. I loved being able to share the experience with my daughter, and the shows were funny and enjoyable.

Everything has so many sides….

The fine art of disagreement

I’ve always craved acceptance. Lots of times that translates to keeping my more unpopular ideas and opinions hidden from view. I’ve got plenty such thoughts that run counter to popular wisdom, causing me some worry about how truly anti-social I might be. When I feel most out of sync with people I care about, I tend to withdraw, stay safely hidden out of sight under cover of work and obligation, keeping friendships and dependencies intact by not exposing them to my “uglier” side.

When I’m out in the world and I hear someone make statements that resonate badly inside me, I tend to hold my tongue. Not always, of course. In technical matters, where I’m very confident of my level of expertise, I can generally make a convincing case against an idea on the table. And I have little trouble presenting views in situations that clearly call for an opinion, such as art, movie reviews, and restaurant wrap-ups.

My difficulty comes when I hear people make sweeping statements that I believe to be one-sided, self-serving, misguided. When what they present as “fact” doesn’t ring true with my experience, the sounds grate and my gut hurts – a most visceral experience. But at the same time, I doubt myself. I’m sure my opinions don’t have the power to sway them from their stance, and I wonder what right I have to question their beliefs. The end result is I keep my mouth shut. The stronger they appear to believe in what they’re saying, the more reluctant I am to present a counter argument.

My behavior is cowardly. I know where it comes from. I grew up in a household where only one person was allowed to hold strong views, and he was known to attack swiftly and viciously when he felt threatened. It wasn’t always safe for the rest of us to act or speak in ways that challenged my father’s dictates.

But I’m a grown up now. It’s time to get beyond the past. There should be other options. I should have learned by now how to dispassionately present a counter idea, to disagree graciously. And under normal circumstances, when I’m relaxed, I do have energy to gather my wits and present my opposing arguments calmly.

But these are not normal times. Cancer makes me cranky. More accurately, stress makes me cranky, and cancer makes me very, very stressed.

Now, more than ever, I find myself drawn into social situations beyond my comfort zone. Many friends and loved ones actively reach out to see how I am, how they can help me. They are concerned, and even want some reassurance for themselves that things are on course. I am touched and grateful for the contact, but lately it’s more frequent than I’m accustomed to. Much of my energy these days goes toward fighting the monster lodged in my lungs and adjusting to the poisons healing my body. I tire easily and don’t always have excess energy for extra human contact. As a result, I’ve also lost the ability to patiently listen to the same dissonant statements over and over, hold my tongue, and swallow my words.

The bottom line is, it’s easier than ever for me to blunder into a place where I lose my cool and sputter my disagreements most disagreeably. Yesterday, for example, at the annual family reunion picnic, I took issue with my brother over something he said that struck me as wrong. I’d heard the same story many times before without commenting, but yesterday, I simply couldn’t hold it. I wasn’t gentle or particularly kind. I just blurted out my truth and put him squarely on the defensive. He didn’t know what hit him.

To his credit, he admitted there might be some validity to what I said. He recognized that he was defensive, but acknowledged he’d think about it later, process it, and try to come away with something positive. I appreciate that he was able to see that.

For my part, my daughter helped me recognize there was much more force behind my arguments than necessary. Having good insights to share isn’t enough. To be taken seriously, I have to present those insights as ideas, not weapons. I hope to shed light with my arguments, but lashing out negates any good that might come from them.

This has been a difficult entry to write. I don’t like to make excuses for my behavior, and I don’t feel good about myself when I inflict pain. Lately, I find myself lacking the control to avoid either. So consider this an explanation, and if necessary, an apology.