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The Roller Coaster (January - August, 1999)

Chapter Body

I hate roller coasters.

I rode my first roller coaster in the summer of 1973, at an otherwise lovely amusement park called Liseberg in Goteborg, Sweden. It was my last roller coaster too. I spent the entire ride with my head down and my eyes closed, fearing my glasses might reach the end of the ride before the rest of me. In subsequent visits to the park, I couldn't so much as walk by that ride without reliving that memory. Oh my head...

I often found myself thinking about that roller coaster during 1999; a year full of twists and turns and numerous highs and lows.

As the year began, I was awaiting a date for my next surgery at Mt. Sinai. When I returned to work after New Year's, I called Dr. Sen's office pleading for a date for this next event. Eventually, a date in late January was proposed — and I promptly begged for something earlier. They came back with January 14 — one week away. And, to make matters even more interesting, we found out that Dr. Urken would not be participating in this operation — the reconstruction would be handled by one of his associates, Dr. Costantino. We managed to get an appointment to meet him for the afternoon before the surgery.

Needless to say, we were in for a wild time getting ready for this one! We arranged to stay in a hotel for the night before the operation, and Ken and my mother would keep the rooms for the night of the surgery as well. Then there were the fun and games with managed care — while the hospital and Dr. Sen were considered "in network," the ENT group at Mt. Sinai was not. (Dr. Costantino was finally approved several days after the surgery took place.) Meanwhile, at work, not only did I have to transition some duties to co-workers, but my cubicle was being relocated the week after the surgery, so I needed to pack up as many things as I could before leaving.

Things got even more interesting on the morning of January 13. As I was packing things for the trip to New York, Mt. Sinai called. Due to a flu epidemic, which resulted in a shortage of beds, I couldn't be admitted that evening as planned. So, what happens to the surgery??? "Well, I don't know," replied the person who called. Oh brother! My mother was on a bus to New York at that point, and I had an appointment to see Dr. Costantino for the afternoon — might as well take off...

Right after we arrived in New York and checked into the hotel, Ken dialed the answering machine at home — and, sure enough, Dr. Sen's office left a message for us to call immediately. They had received word of the bed shortage — but assured us that the surgery was still on. "Once you're in here, they HAVE to find you a bed," we were told. Whew! And with that, it was off to Mt. Sinai to meet Dr. Costantino and undergo the pre-admission testing.

It was one of "those" days at the ENTs' office — some three hours passed before we finally got to meet Dr. Costantino! He proved to be a personable fellow, with a nice sense of humor; and we were able to get most of our questions answered. Then it was time to finally get to the testing — the office had left a message for us at home wondering where we were. As we finally headed back to the hotel to meet my mother for dinner, snow began to fall in the city.

We had to be back at Mt. Sinai at 6:15 the next morning, but we got started earlier. The snow that had started the previous evening was turning into an ice storm. We were fortunate to get a very good cab driver to drive us the 30 blocks from the hotel to the hospital. Although there was concern whether all the staff could make it in due to the weather, our cast of characters managed to arrive just fine.

Since the surgery was expected to run at least six hours, Ken and my mother — Ken's parents were unable to get a bus to New York due to the storm — were surprised to see Dr. Sen four hours after the surgery began. "We've run into a complication," he told Ken. While removing the tumor, the doctors discovered that it had grown around a vein that supplies blood to the brain. Ken suddenly had a decision to make: sew me up and hope for the best, or stop the surgery and send me for an MRI to determine exactly what was happening in there. Ken told the doctor, "Do whatever you have to do to get it out."

The objective of running the MRI was to determine just how important the vein was and whether others could perform its function. If others could handle "the duties," the doctors would cut out about an inch of that vein, then close up the ends. If this couldn't be done, then the doctors would take a small vein from the area of an ankle and transplant it to the head. But it would be some time before we'd get near that MRI machine...

I thought something seemed strange when I awoke in the Recovery Room and the nurse told me it was 12-something in the afternoon. I thought this seemed a little early. Then Dr. Sen came in at 1:30 — his first words to me were "Your husband still couldn't recognize me!" — and explained what happened. I agreed that the MRI was the best course. Ken and my mother came in around 3 for a little while — and then I got to wait and wait for someone to finally take me to Radiology for the MRI.

This finally took place sometime after 6 — and it took awhile longer before the test would begin. Why? The technicians insisted on removing one of the IV-lines — that the anesthesiology staff specifically instructed me not to have anyone touch. ("It took us an hour to put it in!") After some arguing amongst the staff, my line stayed in and I was introduced to this "claustrophobic's delight" — a narrow tube, full of jackhammer-type noises. Once this noisy ordeal ended, I was taken back to the Recovery Room to wait for someone to help move me to the Intensive Care Unit for the night. Due to the shortage of staff caused by the ice storm, a member of the cleaning staff was recruited to help move me.

So, why this surprise? Why wasn't this tumor discovered until now? Ken was told that the plate that had been inserted back in 1993 blocked the CT scan and/or made the images fuzzy. Apparently, any replacement this time around would be made from material that would be suitable for CT scans or MRIs.

The next morning, Ken received a call from Dr. Sen with results from the MRI. The doctor said that the MRI showed that the tumor had already closed the vein. This was good news — it meant that the body had already compensated for the blood vessel. So, Dr. Sen explained, all he needs to do is cut out the errant piece of blood vessel — after tracing the vein to ensure the tumor hasn't spread elsewhere. Surgery would resume between 11 a.m. and noon — estimated time was 3 hours.

I began to feel more like myself by around 10 a.m. With the slight improvement in the weather, Ken's parents were able to come to New York this time. And, as luck would have it, just when I was feeling much closer to normal, it was time to return to the OR.

Part 2 took about 3 to 4 hours and apparently proceeded without incident. However, the effects of two large doses of anesthesia over a 24-hour period were staggering. I later referred to the first days after this operation as "The Lost Weekend." I recall next to nothing about Saturday, except that my head hurt a lot. Ken asked me whether it would be all right for some friends to visit the next day — and although I said yes, to this day, I hardly remember saying so. And I have very little recollection of my visitors. I remember seeing them at some time or other ... I remember seeing a book and some printed e-mail Ken brought — which I eventually read about a week or two after I came home. And then I suggested that the last visitor should leave so I could watch a football game on TV. The visitor left — and the next thing I knew, it was three hours later, the final seconds were ticking down, and I could hear the announcers analyzing what went wrong for the Jets. Oh well! But it was after that point that I finally began to feel more like myself again. And I was moved into a regular room on Monday evening, at long last.

On Tuesday, Dr. Sen ordered me to start walking. Boy, were my legs achy, after less than a week of inactivity! Fortunately, it didn't take too long for them to begin feeling better. However, my eyes were another story. I had asked Ken for my needlework and the laptop; but I soon discovered that it was difficult for my eyes to focus properly. That meant I couldn't do much cross stitching; and my time on the PC was going to be limited. This turned out to be just the beginning of a struggle that has lasted most of the year.

Meanwhile, there was the matter of getting the flap on my head to heal properly. One day, things seemed to look well, other days, the doctors were concerned that I might have to return to the OR for a rectus flap (in which they'd be taking skin from the abdomen and plopping it on my head). By Friday, it appeared that we dodged this trip; and I was going to be permitted to come home on Saturday.

Or so we thought. Saturday morning came — but no one had officially filed the orders. Yet, we had no idea why there was any reason for me to stay another day. Eventually Ken managed to contact Dr. Costantino via beeper — and a resident finally came over with the discharge papers by mid-afternoon. As Ken wrote to the Sick List, "The roller coaster has come to a stop at Helena is HOME!!!"

That first week at home, though, was difficult. For one thing, I managed to pull a muscle in my upper left thigh/hip while getting into the car to come home from the hospital. As a result, that first weekend proved to be agonizing as simple acts as getting up from a chair were terribly painful. Once we got past that, though, I could concentrate on my next issue: trying to function with my glasses sitting at a different angle than usual. After the surgery, the lenses of my glasses weren't properly aligned with my eyes. This forced me to limit the vision-intensive things that keep me sane at times like this, notably reading the papers and being online (let alone all the needlework that was crying to be done). Even worse, hardly anyone called during that first week, which only depressed me more. (True, life goes on for the rest of us, but...)

My first post-op checkup at Mt. Sinai was a mixed bag. Although I could begin to reduce the amount of medication I had to take, there was still a concern over the flap on my head. There was still enough fluid built up in there to cause some concern. While Dr. Costantino still hoped the swelling would go down on its own, we were warned that if it popped, we'd be looking at an immediate return to the OR. In the meantime, I couldn't sleep on my right side — or even think about wearing a wig. Fortunately, we could wash my hair — yes, Ken was back in the hair-washing business.

The next weekend, I made the first of what has been a series of frequent visits to the optician in an effort to adjust my glasses sufficiently enough for me to function effectively. Fortunately, these adjustments are minor enough so that I'm not charged.

Healing continued to progress ever so slowly — rather unusual for me, given my previous history. The stitches were finally removed in late February, but there was still a matter of scabbing — dead skin remained atop the flap. The doctors didn't want to remove it during the operation because they weren't sure at the time just how viable the flap would become. Had this dead skin been removed and the flap proved to be less than satisfactory, I would've been back in the OR for the rectus flap. (I had been prepped for such a procedure back in January, but it wasn't done.)

I returned to work on March 8, after finally getting off the anti-seizure medication. My first task was to find my new cubicle — I had a room number and a slight idea that it was located at the opposite end of the floor from the location I had left in January. Now it time to try getting back to normal...

This turned out to be more challenging than expected. On March 24th, Dr. Costantino finally removed the entire scab. The Good News was that there was viable skin underneath it. However, there wasn't very much of it — and it was very close to the brain lining. He said I was "seriously lucky" — and once again just dodged a trip to the OR for a new flap.

So, to encourage this thing to finally heal, I was placed on "wet-n-dry" dressings. This meant that Ken had to bandage my head twice a day: Soaking a bandage in sterile water, placing it directly on the wound, and covering it with a gauze square, finally wrapping a bandage around my head to keep all this in place. Good thing we had brought a large tote bag with us for this checkup! However, we respectfully declined the doctor's offer of a fife and drum from the supply closet. (Think of the painting of "Spirit of '76.")

This proved to be a bummer, especially for Ken, who was now back in the bandaging business to boot. We were scheduled to spend the weekend in Florida, celebrating our 20th anniversary in Orlando. Ken had to call the hotel and arrange for a handicapped room in order to be able to use a handheld shower to wash my hair. In spite of that, we were able to enjoy some lovely dinners and a few of the sights in Walt Disney World, though not nearly as much as we'd hoped at the time we planned this trip — well before this surgery became necessary.

As it turned out, we had to keep up this bandaging until mid-May. I could finally unearth the wig I hadn't touched since 1994. My beautician said it was still in pretty good shape, so we now had an alternative to all those darn turbans I'd been wearing since January. Of course, since I wore my hair much longer back then (and the wig reflected that), it took a bit of getting used to having "all that hair" — but it was still a nice change. And things seemed to be progressing towards "normalcy" — until...

The Sunday before we left for vacation (June 13), I felt a wetness on the pillow when I woke up in the morning. When Ken checked the scar area from January's surgery, he saw pus pouring out. We surmised I may have gotten an infection from the wig — and Ken set out to resume the dreaded wet-n-dry bandaging, once I had washed the area and the scab had come off by itself.

We called Dr. Costantino, but his service said he was unreachable until Monday. So with that, it was off to the Rutgers Promenaders' 45th Anniversary Dance; all the while trying to determine how to work things out the next day if we suddenly had to go to New York.

We each got into the office early (even for us!) the next day, notifying our respective bosses that we might have to suddenly leave to catch a train to New York. Ken kept calling Mt. Sinai in hopes of at least getting Dr. Costantino's clinical assistant.

The assistant finally called Ken at 11:30 and Ken conferenced me in (ain't technology wonderful?). It was immediately apparent that there would be no trip to New York — the doctor was only going to be in until noon, and there was no way we could dream of getting there in time. Ken described what he saw, and the assistant said she'd try to contact the doctor to see whether any antibiotics would be prescribed. Alas, the call never came (We later learned that the doctor had been involved at a Research Day — during which all beepers and cellular phones had been confiscated. Sheesh.)

So, we drove off to Northern Ohio the next morning to begin our vacation. At a rest stop in south central Pennsylvania (about 2-1/2 hours from home), we dialed the answering machine — and Dr. Costantino's office had left a message about a half-hour after we left home, asking us to call as soon as we received the message. It only took four tries to find a pay phone that would connect us with New York; finally succeeding when we got to a gas station at the next exit off the interstate. When Ken called Mt. Sinai, he was surprised to hear the doctor himself on the other end. He was satisfied with Ken's description of things ("I trust your judgement," he said. After that, Ken began to wonder whether he should add "M.D." to his name.) Of course, I'd have to be seen as soon as possible after we got back, and we made the appointment.

So, we had a 2-week stretch that proved a little more "interesting" than we had planned. Ken continued to "wrap me up" twice a day all through vacation. And I reluctantly went back to the turbans full-time. Fortunately, it seemed to help — by the time we got home, the affected area had been reduced from the size of a quarter to that of a small fingernail.

We went back to our respective offices early in the morning on our first day back at work, so we could take the afternoon off to go to Mt. Sinai to see Dr. Costantino. He thought the problem may have stemmed from some dead scalp tissue that had been taking its own sweet time to leave. (Of course, he didn't see what Ken saw two weeks earlier.) Nevertheless, he was pleased with what he saw — and didn't want to see me again until after my next lung surgery. (I had a checkup at Fox Chase scheduled for July 12th.)

The next lung scan took place on July 7th — exactly one year after the last surgery at Fox Chase. (Time flies whether or not you're having fun, doesn't it?) We saw Dr. Goldberg on the 12th — and he decided it was best to wait awhile longer before scheduling another operation. There were two factors involved in this decision:

  1. Even though there were now a total of six nodules to be concerned with — two in the left lung and four in the right — he felt there had essentially been no change.
  2. Things were reaching the point where they won't be able to operate any more. After all, I've already had three surgeries on the left lung, and that's already considered the limit by most doctors. By that we mean the scar tissue from all those surgeries has accumulated to the point where it becomes too difficult for the surgeon to effectively locate (and subsequently remove) all the nodules that need to come out.

So, the doctor felt we should wait until it becomes obvious that "it's time." When? Who knows? If things remain the same for at least six months, it might be safe to say that this might be the extent of the disease — and then we'd schedule the surgeries. (one on each side, as opposed to cleaning everything out at once)

And with that, we thought we had our summer to ourselves. For the most part, we did — until a little incident two weeks after that checkup at Fox Chase. I was outside, brushing back some hair on the right side of my head, when I noticed that "sticky" sensation again. Now what??? Ken took a look and while there wasn't any pus pouring out from the scar area as we'd experienced back in June, it still seemed to be a matter of concern. Back to those now-dreaded bandages And on July 28th, it was back to Mt. Sinai so Dr. Costantino could take a look.

Bottom line: I had an ulcer — no, not the one from worrying about this stuff! But a "superficial abrasion," or large sore — about the size of a quarter.

Now, what did I do to deserve this??? The doctor said this sort of thing most often happens from using a hair dryer on a setting that's "too high." And since the nerve endings in that area of my head are "messed up" from my surgeries, I may not have an accurate idea of what constitutes "too hot." It could also have been aggravated by sleeping funny on that side of placing some other form of pressure on the area. Now since I've hardly used a blow dryer on my hair since finally getting rid of the turbans, we're tempted to believe that the heat around here may have had something to do with it.

Fortunately, the doctor didn't think it was serious. But I was given a tube of zinc ointment to use twice a day, and it was recommended that Ken "wrap me up" in the evening. (Hey, once a day was better than twice.)

In the meantime, there was one more visit to Fox Chase — and this one was a little different. Since I was approaching the point where additional surgery on my lungs was becoming more challenging, it was time to investigate whether there might be anything new on the horizon that could be viable in my case. So, on July 30th, I met with Dr. Langer, a medical oncologist, and spent a valuable morning getting educated about "systemic treatments." This is a term most often associated with chemotherapy (chemo); but we learned that there's much more. We were introduced to the wonderful world of "inhibitors" and those anti-angiogenesis drugs that have been publicized over the previous year. The difference between these new drugs being developed and chemo is that while chemo sets out to attack the tumor directly, these new things are designed to "mess up the tumor's environment." For example, the best laymen's description of anti-angiogenesis is that these drugs "put your tumor on a diet" — that means the drugs affect the blood vessels of the surrounding tissue, which supply "nutrients" to the tumor. (Therefore, if you cut off the tumor's "food supply," eventually it "dies" of starvation — or so the researchers think.)

Now, since many of these treatments are "under development," this means considering the possibility of entering a clinical trial. Am I ready to become a human guinea pig yet? I'm not sure. However, Dr. Langer pointed out three factors to be considered in my case:

  1. Convenience: This covers such things are timing and especially location. In other words, the less disruption to daily life and work, the better.
  2. Toxicity: This goes hand-in-hand with the next factor
  3. Responsiveness: Why subject myself to nasty drugs if there's no chance that they're going to do anything to help? This is why I haven't had chemo in all this time. Chemo is designed to attack fast-growing tumors, not the slow stuff I've had.

One trial was mentioned as a possibility; but it required the presence of a particular protein in my body. So, the Pathology folks at Fox Chase set out to review the tissue that was removed during the last lung surgery to determine whether I might qualify. I eventually learned that I didn't.

So, since I had the luxury of time, I decided it was time to get myself back in shape. I managed to get my entire workout back by September — for the first time in over a year.

The fall of 1999 proved to be comparatively uneventful, medically speaking. The fall checkup in October at Mt. Sinai went well — the MRI came out fine and Dr. Costantino seemed pleased with the progress in the wound area that had given us so much grief those past several months. The checkup at Fox Chase took place in November; and once again, we dodged another operation on the lungs, as nothing had changed enough to warrant undergoing the procedure at that time.

And now, perhaps we could finally make more progress toward regaining something of a normal life around here. Or maybe not.

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