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.